By Ashley Suarez

Dizziness has followed me for as long as I can remember. As a child, it came in waves: on airplanes, escalators, elevators, rollercoasters, even during simple car rides. Things that seemed normal to other people felt destabilizing to me, like my body processed motion differently. At night, I would lie completely still in bed but feel like I was drifting on a boat, rocking endlessly. Sleep was never something that gently came to me. It was something I had to surrender to out of exhaustion.

Still, I lived my life. I went to school, played sports, laughed with friends. From the outside, everything looked normal. Inside, I was constantly bracing for the next dizzy spell or headache. The headaches were severe, sometimes so intense they led to nosebleeds. When I was twelve, an MRI and neurology appointments led to one answer: severe migraines. I told myself that was manageable. People live with migraines. I could push through. Others have it worse.

But things escalated in high school. I began having violent reactions after eating: vomiting, severe stomach pain, sweating, trembling, dizziness so intense I nearly passed out in class. Eventually, after testing and endoscopies, I was diagnosed with celiac disease. I felt relief at having an answer, but eighteen years of internal damage had already been done. Even after going strictly gluten-free, the nausea, pain, and dizziness didn’t disappear.

And gluten was everywhere, not just in food, but in medications, lotions, vitamins, even pet products. Managing it became a full-time responsibility. I hoped that once I mastered the diet, the dizziness would calm down. Instead, it worsened.

Running became impossible. I remember collapsing after a simple jog around my neighborhood, the vertigo lasting for days. I gave running up entirely. Eventually, I discovered swimming didn’t make the symptoms worse. I never understood why; maybe the water supported my body in a way the ground couldn’t, but I held onto that small victory.

By college, the dizziness was no longer episodic. It was constant. Every second of every day I felt unsteady, as if the ground beneath me was subtly shifting. Stress, caffeine, elevators, stairs, hot showers, lack of sleep, too much sleep, alcohol, almost everything made it worse. Grocery stores overwhelmed me with motion and bright lights. Walking on upper floors of buildings with open railings felt like standing on a tilting platform. I developed routines: closing my eyes while walking, arriving early to interviews so I could recover, focusing intensely on a single object to walk straight.

I stopped sleeping in beds because they made me feel like I was floating. I slept on floors and couches for years and still do because the hardness felt more stable. I adjusted my writing slightly to compensate for how slanted things appeared to me. I intentionally veered right when walking so I wouldn’t drift left. My “straight” was never truly straight.

Eventually, after multiple specialists, I received new diagnoses: vestibular migraines and central vertigo. The dizziness wasn’t in my inner ear; it was neurological. In some ways, the diagnosis validated me. In others, it terrified me. If this was wired into my brain, what did that mean for my future?

Physical therapy didn’t help. Balance retraining, eye exercises, shock therapy…I did it all. Nothing changed. After years of trial and error, I finally found medication that slightly softened the spinning sensation into a constant swaying. It wasn’t gone, but it was livable. I adapted.

I moved to Los Angeles after undergrad, lived independently, held jobs, navigated the dizziness quietly. I moved back to my home state of Texas and worked full time while earning my master’s degree. It wasn’t easy. Stress amplified everything. But I survived. I joked that I was dizzy 24/7 because I was. Humor became my coping mechanism. I thought I had learned to live with my conditions.

Then, about a month ago, everything changed.

I went to the ER for what I believed was a severe celiac flare-up. The stomach pain was intense, but something felt different. My body felt like it was burning from the inside out. The dizziness was violent, not my usual background sway. My chest tightened. Breathing became difficult. I tried to explain that something was wrong beyond a flare-up.

The hospital was busy. I waited for hours. Eventually, I fainted in the waiting room. A nurse placed me in a wheelchair, started IV fluids, and administered medication quickly through my IV.

Within minutes, something shifted.

My body began shaking uncontrollably. Not trembling…convulsing. My jaw quivered, my chest tightened further, my breathing became shallow and desperate. I tried to tell them something was wrong. I was told to sit down and let the medication settle. It didn’t settle.

Time distorted. I drifted in and out of consciousness. I was eventually placed in a hallway bed, still shaking, sweating, and freezing at the same time. Another nurse later told me it was a severe celiac flare-up and gave me more medication.

Eventually, I was discharged. I could barely walk. I went home and collapsed on my apartment floor, shaking for hours, unable to breathe normally. My body felt on fire yet numb. I rested my head on a ball just to feel pressure, humming to distract myself until I finally fell into a restless sleep.

The next day, the vomiting had stopped, but the shaking, chest tightness, and extreme dizziness remained. I went to work anyway, trying to convince myself it would pass. That evening, I went to another ER. Again, I was told it was anxiety and remnants of a flare-up.

It wasn’t.

After days of worsening symptoms, barely walking, struggling to breathe, I returned home to my parents. Finally, at another hospital in my hometown, a nurse listened carefully to the medications I had been given. His expression changed. He told me I was in serotonin syndrome.

The combination of medications administered at the first hospital, along with the prescriptions I was already taking, had pushed my body into a dangerous state. I had been close to respiratory failure. It could have been fatal.

The medication that triggered it should have been administered slowly over ten minutes. Instead, it had been pushed rapidly. My IV site was deeply bruised. I learned I should not have received that medication combination at all.

The realization brought fear and anger. I had known something was wrong.

Since that episode, my dizziness has escalated beyond anything I’ve experienced before. It is no longer a swaying background sensation; it is debilitating. I struggle to walk some days. I had to quit my job and move back home. Sleep medications make it worse. Blood pressure medications make me faint because I’m anemic. Antihistamines intensify the spinning. I lie awake at night in a dizzy haze, hoping for rest.

Some mornings I wake up hopeful that sleep fixed it. It hasn’t.

I’ve had MRIs and CT scans and am waiting for answers, though part of me feels hopeless remembering past scans that changed nothing. I’ve seen a neurologist who isn’t convinced this is vestibular migraine anymore. I plan on reaching out to additional specialists, even the Mayo Clinic, searching for something, an explanation, a treatment, a path forward.

Right now, I spend most days at home, laying on the floor. Walking can feel like navigating a moving ship. Watching a screen is difficult. Even lying down can intensify the spinning. It’s constant. Every second of every day.

I am grateful to be alive. I am grateful for my family helping me move around when I can’t. I am grateful that I can still speak, still write this. But gratitude does not erase the exhaustion or fear. It does not create peace.

I used to joke about being dizzy 24/7. I can’t joke about it anymore.

I am scared this may never go away. Scared that this level of instability is permanent. I try to take it day by day, hour by hour, sometimes second by second. But that is much easier said than done. Living dizzy every second of every day is exhausting. It is disorienting. It is isolating. And right now, peace feels impossible.

I am writing this not because I have answers, but because I don’t. I never imagined I would sit down and try to explain something I don’t fully understand myself. Yet here I am, writing because I am still living this. Because invisible illnesses are isolating; from the outside, I might look fine. Because maybe someone else is quietly living in a body that feels unstable and unseen. Because maybe someone else out there has felt something similar and can understand what this is like.

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About the Author

Ashley Suarez is a 28-year-old writer and advocate currently living in Austin, Texas. She grew up in San Antonio and later attended The University of Texas at Austin for her undergraduate studies. After graduating, Ashley moved to Los Angeles where she worked at a talent management company representing actors and musicians. She eventually returned to Texas to pursue her master’s degree in Animal Science and Behavior, combining her lifelong love of animals with her academic interests.

Over the past two years, Ashley has worked at several veterinary clinics and has cared for a wide variety of pets throughout her life, including dogs, cats, fish, toads, a canary bird, and her favorite pet, a sugar glider named Stitch. Her experiences with animals and science have shaped her compassionate approach to both animal care and human advocacy.

Ashley is a passionate advocate for people living with disabilities and chronic illnesses. Through her writing and personal journey, she encourages others to seek answers, advocate for themselves, and continue pushing forward despite the limitations they may face. 

By Heather Blair

Imagine going twenty-three years of your life without knowing you have a genetic connective tissue disorder.

Growing up, I experienced many symptoms that were dismissed as minor or explained away as growing pains. I was a two-sport athlete, with my main passion being soccer for over 14 years on the same team. I was always tall. My mom loves to tell the story of how I could no longer fit in a baby carrier at just three-months old because my legs were too long. I struggled with significant joint pain throughout childhood. I could do all the “cool party tricks,” like touching my thumbs to my wrists. What I believed was normal, I would later learn, was not.

During my freshman year basketball season, my life changed overnight.

Throughout the season, my condition slowly worsened until I developed severe left leg pain -known as sciatica - from two herniated discs and spinal stenosis that caused foot drop (the inability to pick up my foot on its own). I became home-schooled midway through my school year. On August 16, 2016, I underwent a double laminectomy (removing part of the lamina bone to reach the injured disc) and a double discectomy (removing unwanted disc remnant in the spinal canal, compressing nerves) at two different levels in my lumbar spine. It was supposed to be a one-night stay, but that turned into five nights because they couldn't get my pain under control. That September, I returned to a new school and gradually improved over the next seven years, though I continued to live with what was considered “normal” back pain. Still, no one could explain why I had woken up one day needing major spine surgery at 15-years-old, without an accident or injury.

Fast-forward to 2022, I began experiencing extreme fatigue and worsening joint pain. A local rheumatologist told me I was vitamin D deficient and left it at that. Two months later, I woke up with my left arm and half of my left hand numb and tingling. I assumed I just needed to shake it off, but that wasn’t the case. I had just started my first job as a Certified Clinical Medical Assistant in Pediatrics, and suddenly I needed ulnar nerve elbow surgery at 21-years-old.

Once again, I woke up needing surgery with no clear explanation.

I felt frustrated and deeply unsettled. There had to be a reason behind all of this, yet my concerns were repeatedly dismissed by my pediatricians and the rheumatologist.

In early 2023, while at work, I felt a sharp surge of nerve pain shooting down my previously injured leg. I tried to stay in denial, but the pain quickly became unbearable and the foot drop returned. I had re-herniated the same two discs at levels L4-L5 and L5-S1. I needed a spinal fusion; my spine was practically bone-on-bone. During my surgery, my surgeon had to spend an additional two hours removing an abnormal amount of scar tissue. He referred me to rheumatology for possible hypermobile Ehlers Danlos Syndrome (hEDS), a connective tissue disorder that causes stretchy skin, chronic pain, overly flexible joints, fatigue, and gastrointestinal issues; it affects nearly every part of the human body. There are seven sub-types defined within Ehlers Danlos syndrome. Hypermobile EDS does not yet have a specific genetic test; diagnosis is based on a Beighton score, medical history, and physical evaluation.

During my hospital stay, several doctors suggested the same referral. I had many key indicators: difficulty holding IVs, translucent and doughy skin, extremely flat feet and hypermobility in most areas of my body. During my surgeries in 2023, my incisions reopened and had to be surgically glued shut while I was awake. In 2025, after my CSF leak repair surgery, my incision reopened after stitch removal performed by plastic surgery, again, while I was awake.

When I finally saw a new rheumatologist, he diagnosed me with hEDS almost immediately. He told me I was a classic hEDS patient based on my appearance alone. In that moment, relief and grief arrived together. Relief that there was finally a name for the pain, the surgeries, the years of unanswered questions. But grief for the time I lost, the years spent doubting my body, questioning myself, and wondering if the pain was somehow my fault. A diagnosis does not ease what came before it, but it gives shape to chaos. For the first time, my story began to make sense.

In 2024, I underwent yet another surgery on my right elbow, my dominant arm, which was the third surgery of my life for the same issue. At least this time, I finally understood why. HEDS changed my life overnight when I was 15-years-old. If only that little girl had known the journey ahead. There is no cure for hEDS, only management. Medication has helped me manage chronic pain and improve my hyperPOTS, though I am still working to find the right balance.

Grief is often described in five stages: denial, bargaining, anger, depression, and acceptance. Most people associate grief with the loss of a loved one. But for those living with chronic illness, grief takes on a different shape. We grieve the person we used to be.

The truth I wish I had encountered earlier is this: terminal illness is a death sentence; chronic illness is a life sentence. Chronic illness is not a temporary struggle. It is a lifetime of starting over, learning to live in a body that sometimes feels like a stranger, one that has betrayed you.

Today, my medical history includes eight hospital stays; two inpatient rehabilitation stays; four spine surgeries; more than ten epidurals; three blood patches; two myelograms; two elbow surgeries; the deterioration of my autonomic nervous system; a migraine disorder; and one life-changing surgery from which I am only a year post-op.

My passion and love for sports were taken from me. I can no longer use the certifications I worked so hard to earn. Every day, I am still figuring out who I am, with a body that says “no” and a mind that still says “yes.” Some days, I feel painfully behind for my age.

My heart aches for the 15-year-old girl who had no idea of what lay ahead, yet it also feels immense pride for the strength and resilience it has taken to get this far. I had the choice to let hEDS swallow me or grow me. I know this is part of my life’s journey, but I refuse to let it define who I am.

There were times I cried until there were no tears left and long stretches where sadness consumed me. Even in moments of happiness, it felt difficult to allow myself joy. Hope felt impossible when my inner world was caught in a relentless loop, a rollercoaster with no end in sight.

Through it all, I have learned that mental health is not optional; it is essential. Living with chronic illness has taught me some of life’s hardest lessons: healing isn’t linear; the little things are actually the big things; self-love is not selfish; asking for help is not weakness; your body is the captor of your soul, so take care of it; scars are stories of strength; and kindness to others and to ourselves is one of the most powerful gifts we can offer. There are still many lessons ahead, but I am learning to accept myself for who I am and for the person I am still becoming. I am learning to wear my scars proudly as reminders of everything I have survived.

My journey has reshaped my understanding of life’s purpose. In the end, I believe it comes down to one thing: love.

As my father always said, “Don’t make a permanent decision on a temporary timeline.” Through the darkest days, I have realized that my best and happiest days may still be ahead of me. I am still searching for my light and my purpose, but I know the best version of myself shines when I am surrounded by people who love me unapologetically and authentically.

For so long, I felt ashamed, embarrassed, and compelled to shrink because of my illness. Now, I feel a fire within me to raise awareness for these complex conditions—because if sharing my story helps even one person feel seen, understood, or diagnosed sooner, then it is worth it.

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About the Author

Heather Blair just turned 25 at the end of February 2026. She lives with hEDS, HyperPOTS, Lumbar Spinal Fusion, and she is a two-time spinal CSF leak survivor. Heather aspires to spread awareness internationally for these complex medical conditions and the medical negligence patients face along the journey. Not only does she spread awareness for the medical portion, but the mental health side of it, too, which no one seems to talk about. She advocates for the people who are suffering, who need help, for someone to relate to. She never wants anyone to have to go through the pain and trauma she experienced. If you would like to read more about her medical journey or follow along with her advocacy work, you can check out her website.

By Sarah Whaley

When the medical assistant called my name, I followed her down the hallway. After the routine vitals, she led me into a brightly lit exam room that suddenly felt smaller than it should have. I was handed a cloth gown, told to undress from the waist up and leave it open in the front, and then left alone with just my thoughts. I braced myself for what I assumed would be a familiar role: advocate, negotiator, maybe even adversary. I was ready to fight for what I believed was right for my body.

The door opened exactly on time. The surgeon introduced herself, her voice warm and unhurried. She sat down across from me and pulled out my pathology report, holding the pages between us as if they belonged to both of us. There was nothing rushed in her movements. “Breast cancer treatment usually has several possible components,” she explained. “Surgery is one. Sometimes radiation. Sometimes chemotherapy. Often anti-hormonal therapy. Whether each applies depends on the specifics of the tumor.” She laid out the terrain but did not lead me toward a conclusion. For the next ninety minutes, the surgeon walked through my diagnosis, prognosis and every viable course of treatment. She then went into extensive detail about my surgical options and did so without any bias. I’m certain she had a clinical preference based on the specifics of my diagnosis, but I wouldn't have been able to identify that preference based on how she presented the information. Each option was offered with the same tone, the same weight, the same respect for uncertainty.

When the surgeon finished, I took a breath. “Can I walk you through how I’m thinking about this? And then tell you where I’m leaning.” I wanted her to tell me two things: one, if my leaning was appropriate and medically indicated given the specifics of what I was facing and two, if a family member had my exact profile would she support this preference. She listened intently as I verbalized my thought process, something I had considered at length. I explained that I had been called back repeatedly over time for abnormal findings, each instance launching the same exhausting sequence of urgent notifications, negotiations for timely follow up, weeks of waiting for additional imaging, then more waiting for biopsies, all while living in the psychological limbo of not knowing whether I had cancer or not. It was not just stressful, I told her; it had become a recurring condition of my life. I went on to explain that my concern with choosing a lumpectomy was not simply surgical, but structural. The pattern of surveillance would continue. The frequency of callbacks would likely persist. The emotional and cognitive burden of perpetual monitoring would remain intact. With a double mastectomy, I understood that recurrence risk would not disappear, but the nature of surveillance would fundamentally change.

As I spoke, the surgeon didn’t interrupt. When I finished, she told me that my rationale was sound and medically indicated and that she would support the double mastectomy that I was leaning toward if it were a member of her family. From there, she moved with the same precision into reconstruction options, closure options, and what it would mean if I chose to stay flat. By the end of the appointment, I had every single piece of information that I would need to make a truly informed decision. This initial meeting set the tone for every interaction that would follow. It communicated confidence and competence and also built trust. I knew I had a doctor that didn’t just listen to me but truly considered me.

Being treated as a capable, thinking participant in my own care fundamentally changed how I showed up as a patient. I wasn’t second-guessing every decision in the quiet hours after appointments. I wasn’t spiraling through worst-case scenarios or crowdsourcing reassurance from the internet. I felt grounded in the decisions I was making because they were made with me, not for me. That confidence mattered. It allowed me to be decisive rather than deferential, engaged rather than anxious. I wasn’t trying to manage my fear alone, nor was I outsourcing responsibility for my body. The collaboration itself became stabilizing.

The day of surgery, the doctor met with me twice prior to being wheeled back. She explained everything that was going to happen, the timeline, and what post-op and recovery would look like. Then, almost imperceptibly, the conversation shifted. We moved beyond logistics into something lighter and less clinical. I don’t remember the specifics of what we talked about, only the feeling of it. It was an easy back-and-forth that briefly displaced the gravity of what was about to happen. It was a bit of co-regulating for my nervous system that I didn’t know I needed. At one point, I half-jokingly asked whether she had eaten a good breakfast and whether her hands felt steady and well rested. The surgeon smiled, assured me she was more than prepared, and added that I was her first and only surgery of the day. I told her I had just two requests: keep me alive and please don’t leave me with side boobs. The exchange steadied me. In those moments, she was not just an exceptional surgeon executing a high stakes procedure; she was a person fully present with another person.  

Every interaction since that initial appointment has been collaborative. There are not many circumstances I can think of where I would go against the medical advice of my doctors. While I want to have full understanding and often discussions surrounding treatment and care, I also am quick to defer to their professional judgement and expertise. I recognize what is her lane and what is mine and I don’t presume to place us on equal footing in that regard. However, I also think patient collaboration is vital in medicine and directly impacts patient outcomes. Through personal interactions, doctors instill trust with their patients.

Because cancer is multi-pronged in treatment and follow up, I had multiple follow up appointments with my surgeon to address seromas and to have drains re-inserted. Many of these appointments were at the end of what I presume was a very full day for her. Never once did I feel rushed or like an inconvenience. She gave me the same level of attentiveness as if I were her first patient of the day. Each time I reached out about concerns with fluid accumulation, she was responsive and timely. The level of attentiveness was rare in my experience and as a whole I have had some excellent doctors throughout my life. Outside of the follow ups, my doctor communicated specifics of results that slowly rolled in and also kept me informed about what they would mean for follow up treatment. I never once had to initiate that communication. This attention to detail and follow up also instills confidence and solidifies trust in a clinician.

That confidence had tangible effects. I was able to move forward with treatment decisions efficiently and without regret. I followed post-operative instructions closely because I understood not just what to do, but why it mattered. When complications arose, as they often do, I approached them calmly and promptly, knowing I would be taken seriously. There was no adversarial tone, no sense that I needed to exaggerate symptoms to be heard. Trust reduced friction. It reduced noise. In a process as physically and emotionally taxing as cancer treatment, those are not soft benefits; they are clinical ones.

My surgeon literally saved my life, but beyond that, she treated my life like something precious. Surgeons are known for their precision and singular focus on cutting out the “bad stuff." Her approach was much more holistic, considering quality of life versus side effects of care. I appreciated her direct approach and her willingness to have very frank discussions with me. I didn’t need my hand held. Some patients may and that’s fine, too. I'm sure if that is what I needed from her, she would have been capable of doing that as well. I am grateful she got an accurate read on me early and was the surgeon I needed.

Collaboration did not erase hierarchy, nor should it. My surgeon’s expertise was essential; my role was never to challenge her training or substitute my judgment for hers. But hierarchy does not have to mean distance, and authority does not require opacity. In this relationship, power was not hoarded or performed. It was exercised with clarity, restraint and confidence. That made it safe. I could trust my doctor because she did not need me to be passive in order to remain in control. She held authority without defensiveness, and in doing so, made room for me to hold agency without apology.

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About the Author

Sarah Whaley serves as a school district administrator, where she works at the intersection of systems, leadership and human behavior. She believes institutions function best when trust is intentional and relationships are treated as foundational infrastructure. Her writing explores leadership, health, power and the relational dynamics that shape outcomes.

On Feb. 3, three patient storytellers—Dee, Rubin, and Janet—joined Dr. Annie Brewster and Dr. Jonathan Adler for a live healing story session. The event was hosted by students from Harvard Medical School advanced elective titled "Harnessing the Healing Power of Stories: Narrative Theory and Narrative Practice.” The storytellers worked with the Harvard Medical School students to craft inspiring stories that transcend illness as a celebration of hope, human resiliency, and dignity.

By Lauri

If you were to ask me,

“Hey Lauri, tell me a bit about yourself,” I would say, “ I’m 65 years old. I was raised in Pennsylvania. I have 2 kids, who are both here today, Ashley and Mark. Ashley, who is now 40, private support professional for an autistic 2nd grade boy at the same elementary school that she attended.  Mark works from home as VP of access controls for a financial institution. I also one awesome grandson, Macklin, who is 10, and in 5th, middle school. Hard to believe. I remember the day he was born.”  However, that does not even scratch the surface. 

I was born in Orange, New Jersey, to my two parents, Mimi and Marvin. Mom was born on Groundhog’s Day 1932 in Detroit, Michigan. Dad was born on June 22, 1929 and raised in NY. Both of them are 1st generation American citizens. Their parents emigrated from Hungary.

When we heard them speaking Hungarian, we knew they were having a conversation not meant for our ears. They were probably talking about us! I am the youngest of three, with an older brother Bruce, and a sister Debbie. Unfortunately, we lost Bruce when he was 61 in 2018.

When I was 2 ½ years old, our family moved from New Jersey to Trucksville, Pennsylvania. We were the only Jewish family in our neighborhood. I remember being in the first grade and having Mrs. Roeder phone my mother to ask permission for me to help decorate her Christmas tree. I was very close to Mrs. Roeder. I used to bake little cakes in my Easy Bake Oven and delivered them to her home. 

My parents agreed to let me decorate her Christmas tree. What was even more exciting was discovering there was gift with my name on it under that tree that I helped decorate.

Mrs. Roeder, Judy, still remains an important person in my life.

While we were living in Trucksville, I was at a girlfriend’s house having terrible stomach pains. It was her boyfriend, Billy, who actually diagnosed appendicitis. I went to the doctor that night, and he was right. Twelve hours later I was in the OR having my appendix removed. This was the first of many surgeries to follow.

Soon after that, Dad’s employment had us moving to Allentown. With a much larger Jewish population, I became quite active in the Jewish Community Center. When I was 14 years old, I became a candy striper at a local hospital. The hospital was so close that I was able to walk there. Later, I volunteered at the state hospital. I was active at the Jewish Community Center. I was responsible for finding volunteers to not only visit the elderly, but take them to the supermarket and unload their groceries. Sometimes we even helped them prepare a meal. When volunteering with the blind, we read to them, and even helped to straighten clothing drawers. In my first year of college, in one my classes, we actually visited the criminally insane. They were in a facility for emotionally challenged adults. I discovered my passion for helping those who could not help themselves.

In 1979, my family relocated to Brookline, MA. I was 19 years old.

That is when I met a young man visiting his Mom who lived across the street from us. Our relationship went from dating to engagement to marriage to parenting to divorce. A short time before the wedding, we were at a BBQ. I was bitten by SOMETHING, which I believe was a spider. The next morning, the bite was red, large, hot, itchy and swollen. A white ring encircled it. Confused, I went to the ER. The doctor did not seem overly concerned, dismissing it as pre wedding jitters. His comments reassured me that it was nothing more than a simple bug bite.

In the timeframe between my bug bite and wedding, I lost complete vision in my left eye. I thought it was a confusing symptom. I saw a neuro ophthalmologist.

He ran tests, which were inconclusive. My wedding day arrived. I could only see through one eye. With so many things going on, I did not allow the symptoms to get in the way. I was too focused on the joyous event. Over the next several months, my vision slowly returned. There was no official diagnosis and MRI’s were not yet being used. Looking back, it was the first of many MS symptoms. Over the next 7 years, my health was quite stable. Now 1987, I was at a routine annual physical.

My PCP (primary care physician) suggested that given my medical history, I could benefit from having a new, modern diagnostic tool, called Magnetic Resonance Imaging, an MRI. I had to wait a week for the results. I was not overly concerned. My doctor called and his exact words were “I am sorry, but the MRI shows that you have MS”. My response was “What is MS? Am I going to die from it.” He replied, no you will not die from it. I then asked, “Then how can I live with it?”

I hope it is apparent to those of you hearing my story, that I am a very easygoing, laid back kind of person. I had faith in my doctors. I was young, married and enjoying life.

 They reassured me that I should continue living and not let this diagnosis consume me. Not satisfied with that statement, I looked for a neurologist who would cure me. I truly believed that a cure existed and was not willing to stop until I found one. I heard about bee venom helping to relieve symptoms. I learned of a book titled Bee Healthy ;

that’s B-E-E Healthy. I read it, found a bee apiary and obtained bees. With help, I began stinging myself. 20 or more stings a day, times 3 or 4 days a week, over several months. It was a fruitless attempt to find a cure.

Fortunately, I found Dr. Salvatore Napoli. He helped me realize that my desire was not realistic. He discussed treatment rather than cure. Dr. Napoli continues to follow and manage my MS. I’m thankful that he holds office hours here at The Boston Home.

After my diagnosis, I was getting routine CT and PET scans. It was during one of these tests that an adenocarcinoma was found in my right lung. It was a cancerous tumor. A biopsy was performed and the tumor was found to be malignant. After much research, my Dad and stepmother found Dr. David Sugarbaker, a world-renowned surgical thoracic oncologist. He performed surgery and the tumor was removed. He predicted that there would likely be more.

Unfortunately, he nailed it! One of the lung lesions had metastasized to my brain. That, too, was successfully removed.

Learning that I had cancer came as no surprise. Several members of my immediate family were stricken with cancer. Some are still fighting, others lost their battle. Unfortunately, my mother lost her life at the age of 51. She was a smoker who had promised to quit several times. One of those times, when I was looking for her, I followed the scent of cigarette smoke. That odor led me to the bathroom in her bedroom. When I called for her, she told me to go away and she would be out soon. There was quite a role reversal when I insisted that she come out from the bathroom. When she finally agreed to make an appearance, she begged me not to tell Dad that I caught her. Mom and I often shared secrets. My unprofessional opinion is that there must be some sort of genetic link between the cancers in our family.

Fortunately, my doctors are extremely proactive. Recently, while conducting a follow up MRI, a small growth on the brain had increased minimally in size. We are now waiting for more MRI’s, hoping the growth remains stable. A small malignant tumor was also found on my liver. Yet again, one more surgery. Fortunately, livers rejuvenate, as did mine. I continued to have the attitude of, if it can be fixed, do so. I’m not going to worry about it. That’s what the doctors get paid for!

I decided to focus on something other than cancer. I started weightlifting. I loved the rush of adrenaline. My trainer pushed me hard. He told me to lift 30. I told myself, no, lift 50. And I did. The result of my eagerness was a torn rotator cuff. As if one wasn’t enough, it took a total 3 surgeries to repair them. The pain continued to be so bad. A recent MRI showed that the shoulder is bone-on-bone. This would normally require a shoulder replacement. The surgeon used the following words: “If I put you on the table, you will die. Your body is too compromised to survive yet another surgery.” This instilled the fear of God in me. I went to a pain clinic.

This is where a sprint device was inserted into a nerve in my back, connecting to the nerves in my shoulder. Medically, this could only stay in my body for 2 months. The hope is that the pain relief could last up to a year. If the pain recurs, we can reintroduce the device. So far, it’s been working.

While dealing with the cancer, my MS was slowly progressing. Losing the ability to get up and go like I used to took a toll on me emotionally.

It led to dramatic lifestyle changes. I was no longer able to drive, work, or even sleep in my own bed.

This was a difficult reality. It was much harder to accept than the “just fix it” attitude I had with the cancer diagnosis. A neurologist suggested physical therapy. She referred me to a new facility called Total Rehab and Fitness. I called right away and went several days a week. The exercise brought back the adrenaline rush of my weightlifting days.

There was still trepidation with me developing more cancer. Tests revealed something abnormal on my pancreas. Pancreatic cancer is one of the most deadly, in which many patients do not survive. Soon after, I was having a phone conversation with my doctor.

Dr. Clancy explained a surgical procedure known as the Whipple.

I agreed to the surgery, which removed the head of the pancreas, some of the small intestine, and the gall bladder. It was a six-hour procedure.

On a positive note, not only did the surgery save my life, but it also resulted in a major weight loss. Funny enough, as a young girl (maybe 11 or 12 years old), I attended a summer camp for overweight girls. Unfortunately, I gained the weight back. I returned a second time to try again.

After the Whipple procedure, I spent two years living at New Bridge on the Charles, a retirement community that offers long-term care. I lived there while waiting for admission to The Boston Home.

Fortunately, that phone call came in December 2024. On New Years Eve, I moved in. My time here at The Boston Home has been an invaluable experience. I have learned that my strong will and mind have proven my ability to leap over any obstacle that tries to block my path. With all that I have faced having to conquer those obstacles, I realize that I am not as bad off as people say I am. Many have asked, “Why you?” My response is always the same: “Why not?”

They always look at me as if I were crazy. The truth is, it is okay with me because I know that I can handle it. There are so many people much worse off than me. Many do not know how to handle as much as I have.

Through disease progression and cancer surgeries, I have kept up with exercise and PT. It is still a priority. I have been going consistently for 11 years. Currently, I go twice a week to MSSSC (Multiple Sclerosis Specialty Center) in Quincy.

This is not the first time I have been asked to share my story. When my daughter Ashley was in kindergarten, I was called upon to talk about my medical experiences. Ashley had told a story about me. My medical journey has grown so much more since that time, but my upbeat attitude remains as positive now as it was back then.

By Val Walker

Muddled by heavy thinking about national and global events alongside my own troubles, I’m overloaded, distracted, and cannot stop doomscrolling. How dare I step away from my laptop and phone just to sit by the window?

Yes, just sit there.

I gaze upon sparkling snow-laden trees and blue sky with soaring grey and white clouds. A burst of wind sprays powdery snow from the waving limbs of these amazingly agile trees, and it takes my breath away. A bold chickadee darts through the freezing, lingering breezes and alights effortlessly on a lower branch near my window. We are close enough for eye-to-eye contact. We see each other and pause. Time stops.

Enchanted, I lose myself in the moment and my thoughts disappear. I needed this moment, this chickadee visit, these spiraling ribbons of snow drifting from the treetops. How beautiful and perfect this all is!

I’m awestruck and dumbstruck at once. And it feels good, right down to my bones, just to know that my sense of wonder has allowed me to welcome the blessings of a January afternoon in New England.

Thank goodness for our human emotions of wonder and awe!

Here in this moment, in this wonder, is where I belong, no matter how awful the ever-breaking news makes me feel.

I can be astonished by the wondrous beauty around me, yet at the very same minute, still feel anguish, outrage, and grief. I behold the opposite poles of my emotions: the awe of a chickadee, trees, sky, and snow, and the heartbreak of ruptured alliances between nations, a crumbling world order, turmoil in Minneapolis, and closer to home, the death of a dear friend last month.

This mix of widely divergent emotions echoes the fluid state of our sense of security in our lives and in our world at these times. But fortunately, even brief pockets of wonder give us steadiness, grounding, and a sense of belonging to the oneness of the moment. Having faith in the power of these moments of awe might help us live a little easier through uncertainty and erratic changes.

Indeed, I am in awe of how we as human beings can stop and marvel at something wondrous that takes our breath away while still in the throes of grief or crisis—all in the same day. Our ability and willingness to be amazed make us resilient and hopeful.

In my new book, Healing Through Wonder: How Awe Restores Us After Trauma and Loss, I profiled people who were exceptionally open to experiences of awe, wonder, and beauty. Their awe-inspiring encounters with amazing people, places, nature, and the arts gave them hope and meaning, even in times of overwhelming grief and turmoil.

I would like to share the well-earned wisdom from three people profiled about how awe and wonder can help us live in uncertain and turbulent times.

Robyn Houston-Bean

Robyn is the founder of the Sun Will Rise Foundation, a nonprofit organization dedicated to grief support for people who are bereaved due to substance-use-related causes. Her foundation was created after her twenty-year-old son, Nicholas Bean, died from an accidental polysubstance overdose in May 2015.

Robyn’s Wonder Wisdom

“How do we lose our sense of wonder? People lose their sense of wonder when they lose hope. They don’t look forward to anything.”

“What helps us heal through wonder: Appreciate the little wonders, the little surprises, see the beauty around you.”

“Notice the concrete, physical things, the things you can touch (to ground yourself). Take a walk. Listen to the wind.”

“Be willing to share your story of a wondrous thing (it might inspire someone else).”

“We need a sense of wonder to keep us connected to the world outside of ourselves. If we don’t have wonder, we think we are all alone, and our pain is ours alone—and that makes us lonely.”

Luke Schmaltz (upper left), Val Walker (upper right), Robyn Houston-Bean (lower center) share stories of wondrous encounters on the Healing Through Wonder YouTube channel.

Luke Schmaltz

Luke is a songwriter, singer, writer, and an advocate for trauma survivors and others in recovery. He lives in Denver, Colorado, and writes for the VOICES Newsletter for SADOD (Support After a Death by Overdose).

Luke’s Wonder Wisdom

“What causes people to lose their sense of wonder? Isolation, avoiding conversation and interactions. Being too caught up in your headspace. Not noticing a sense of connection in nature and animals.”

“Wonder helps you by shifting your focus to something or someone outside of yourself.”

“Finding wonder happens in everyday conversations. Being grateful for the amazing things people say and do.”

“Wonder restores our faith in humanity and makes us more compassionate.”

“Wonder keeps us from relying too much on technology.”

Robyn Houston-Bean (upper left), Val Walker (upper right), Carol Bowers (lower left), Tanya Lord (lower right) share stories on the Healing Through Wonder YouTube channel.

Carol Bowers

Carol volunteers with local recovery and peer grief support organizations in the greater Boston area. She is the proud mother of a daughter and son, with five grandchildren and two great-grandchildren. Her husband, Jeff, died in 2022 after a strong, loving partnership of thirty-one years.

Carol’s Wonder Wisdom

“What causes people to lose their sense of wonder? Society can be harsh and judgmental.

“Social pressure to fit in can push us away from our sense of wonder.”

“How wonder helps us live with grief: Sharing our stories of wonder with each other and  talking to people who have been through what you have.”

“We can inspire wonder in each other by showing interest.”

“Wonder helps us stay authentic in a world of social pressure to be someone else.”

“Wonder helps us be honest with each other.”

“Wonder is everywhere if you are willing to see it.”

“My favorite song is ‘Hold on for one more day’ by Wilson Phillips.”

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About the Author

Val Walker is a contributing blogger for Psychology Today and the author of The Art of Comforting, a Nautilus Book Award Gold winner that was recommended by the Boston Public Health Commission as a guide for families after the Boston Marathon bombing. She is also the author of 400 Friends and No One to Call: Breaking Through Isolation and Building Community and speaks nationwide on building social support after loss and major life changes. Val is a former rehabilitation counselor who now facilitates groups and workshops for people living with grief, illness, and disability. Her articles, quotes, and Q&As have appeared in TIME, AARP Online, The New York Times, The Wall Street Journal, Coping with Cancer Magazine, The Boston Globe, Caregiver Solutions, Good Housekeeping, and Chicago Tribune.

Her latest book, Healing Through Wonder: How Awe Restores Us After Trauma and Loss, was released January 8 with Bloomsbury Publishing.

Read more at https://HealingThroughWonder.com

Keep up with Val at  https://ValWalkerAuthor.com

Visit the Healing Through Wonder YouTube channel. https://www.youtube.com/@WonderforLiving

By Makenna Miller

“Makenna, pull over.”

From my mom’s tone, I could tell she was serious. I knew that I wasn’t the best driver, but was I so bad that we had to stop practicing so abruptly? “Did I do something wro-”

That was when I saw my father clutching his chest in the passenger seat. He was there, but not entirely. He was no longer pretending to jolt forward every time I stepped on the brakes or calling me “speed racer.” The color had drained from his face, and his limbs seemed to want to convulse inwards on themselves. Like the undead, his eyes flicked to mine and reflected fear in the pupils of a man who wasn’t scared of anything. 

Both the driver’s side door and the door behind me flung open simultaneously, and my mother and I toppled over one another in a hurry to switch places. In the back seat, my mind raced as my mom weaved through small town traffic, trying to escape the remote roads that we thought would be best for one of my first driving experiences. Unfortunately, I knew all too well what was happening. My dad’s first heart attack had been silent; it was kept hidden from me because I was only five at the time. All that had changed in my mind was we couldn’t have a bowl of ice cream every night after dinner anymore. Now, it was different. This heart attack was loud and happening in front of my eyes. Ten years after the first heart attack, I was able to understand the severity of the situation. Could I lose my father, the man who was meant to raise me, the man that quit his job so he could be there for me and my brother? Could it all end, just like that? 

My dad had just gone on a thirty-mile-long bike ride the weekend before. He worked out every other day, and, for the most part, he didn’t even like greasy food. He monitored his blood pressure and took his medicine every day. Why was this happening? That was the thought that kept jumping back into my head. Did I cause this? 

“Do you want me to stop at the women’s hospital?” My mom asked with desperation in her voice. 

“No, the ER,” my father stumbled out. It sounded as if there was barely enough breath to support his words, as he remained folded on top of himself.

With the emergency room still a few miles down the highway, I watched as the women’s hospital blurred by. I wondered if that would be the moment that my mom and I would regret for the rest of our lives; if we stopped at the women’s hospital, would there have been a different outcome? 

Minutes that felt like hours went by while I listened to the painful groans of my father, until we finally reached the emergency room. Immediately, my father got out of the car and stumbled towards the door. Like a zombie, his feet staggered over one another, and his right hand stayed glued to his chest. 

The receptionist looked at us without an ounce of sympathy in her eyes, surely exhausted from the surge of COVID-19 victims that filled the hospital beds just behind the door to her right. The tears in my eyes and the agony on my father’s face did not cue the receptionist into the urgency that the ER was supposed to be notorious for. Maybe the masks glued to our faces blocked out empathy, as well as the virus. The receptionist asked us questions about insurance and had us fill out paperwork while my father gripped the front desk so he did not topple over. Eventually, a nurse came out to take my mom and dad to the back, but, as per the rules of the pandemic, I had to remain in the waiting room, alone.

Despite the mess of patients that spilled into the halls just beyond the door where my family had been taken, there was not another soul around me. All the other family members of patients had to wait for updates inside Zoom rooms while I used my mask to wipe my tears. I made my way to a corner of the room that was tucked away from the view of the front desk. Behind the tan chairs were tan walls where natural lighting dissipated into the staleness of the air. In an attempt to keep my last ounce of composure, I made myself watch the Home Improvement channel, but all I could think about was my dad. 

His hard work. His humbleness. Not only had my father built the house we lived in, but he built the family inside. Don’t get me wrong, there were times when the endless teasing would make me want to slam doors, but it thickened my skin. At the end of the day, what mattered was that he always came through. From countless hours teaching me how to implement the drop step into my basketball game to numerous instances of him providing free manual labor to his friends and family, my dad was always there when someone nearby needed help. Coming from my father, a hug was rare, but there was always a home-cooked meal from him waiting for me at the end of the day. I needed the opportunity to appreciate him for everything he was—for everything he gave. 

After spending an eternity waiting, I finally got word that they had put a stent in my father’s heart and that he would be okay. Every muscle in my body untensed all at once. At this moment, I was also informed by my mother that my father had been feeling slight chest pains before we ever even left the house, but he had wrongly determined that it wasn’t anything to worry about. Immense relief toppled over me. My mom and I wouldn’t have to regret not taking the exit to the women’s hospital, and I wouldn’t have to hold a grudge against the ER receptionist for the rest of my life. All I would have to deal with was my father joking that it was my driving that caused him to have a heart attack, but he was allowed to give me a hard time because all that mattered was that he still could. 

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About the Author:

Makenna is a third-year student at the University of Illinois Springfield studying English with a minor in Management Information Systems. As a future editor, she enjoys writing poetry and short stories. In her free time, she frequently cooks, exercises, and reads. 

On April 6, 2025, HSC hosted its third annual event, titled “Healing Healthcare Through Shared Stories: Elevating Patient and Provider Voices". The event included keynote speeches from healthcare provider Dr. Katherine Gergen Barnett and health advocate and nonprofit founder Cheryl Harding.

As health systems have become increasingly corporate, patients and providers are feeling more disconnected than ever. Provider burnout rates are at an all-time high, and patients are not getting what they need. The goal of this event was to highlight the humanity of both patients and providers by fostering a community of understanding, connection, and healing. To heal healthcare, patients and providers need to come together as allies.

This event featured patients and their healthcare providers sharing personal stories side by side, highlighting the challenges and triumphs they have experienced separately and together. This shared storytelling session offered a unique perspective on the patient-provider relationship, emphasizing the importance of empathy, communication, and mutual respect.

This dialogue focused on identifying the aspects of healthcare that feel broken and exploring potential solutions to mend these fractures. By elevating these voices, we aim to inspire change and promote a more healing and supportive healthcare experience for all.

By Dr. Favour Rubyson Kharnaior

Meghalaya, India—a hilly state where clouds love to reside, where rain in Mawsynram sings through the year, where the Umiam River reflects the sun by day and the moon by night. A matrilineal society, home to the Khasi, Jaintia, and Garo tribes.

Within this breathtaking creation, a silent burden grows. Cancer creeps through the hills, claiming more lives each year. Tobacco and betel nut—symbols of social warmth and tradition—have become quiet contributors to disease.

Across the hills, voices speak of loss and struggle. In remote villages, new ways meet old beliefs. Even when care is near, some turn to traditional healers — not out of disbelief in modern medicine, but because of financial hardship and the long, distant journey.

Many avoid the path of screening — not from shame, stigma, or neglect, but out of fear.
Fear of diagnosis.
Fear of judgement.
Fear that no cure exists.
Behind that fear stands denial — a quiet wall keeping people from seeking early diagnosis. But the fear of death invades denial and drives the hidden towards care. And in that fragile moment, hope breathes — searching for someone who will listen with empathy.

Those who sympathise and empathise rise each morning — to plant, to teach, to heal. Through education, explanation, compassion, and the simple act of listening longer than required, they build a bridge of trust between community and care. And then, trust inspires the bravest to rise — to travel miles in search of treatment.

Truth plans, cuts, and wounds—then balms the wound to heal.
Faith pushes the warriors forward—to fight and endure until the end.
Love whispers: “Trust the hands that mould, hold, and care for you—and remember how brave we have been.”

In the hush between rain and mist, faith breathes—unseen, yet alive.
From the silent hills flows a river of love, resuscitating every heart that refuses to give up.

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About the Author

Dr. Favour Rubyson Kharnaior is a public health researcher from Meghalaya, India. Since 2021, he has been working on community engagement, cancer prevention, and behavioural health, with a particular interest in how cultural beliefs, social structures, and human responses influence health-seeking practices. This piece reflects his experiences working with medical professionals and communities in Meghalaya to strengthen the healthcare system. It was originally published with World Cancer Day.

By Michael Grivas

One morning, when I was a 23-year-old college student in Patras, I decided to visit my grandmother. I wanted to surprise her, to brighten her day. As soon as she opened the door, she was so happy and immediately told me to come in. We sat on the couch, laughing, talking about my student life, about the small and big things of everyday life. It was one of those moments that seem simple but later you realize how important they were. Suddenly, I felt a sharp pain in my chest. My heart was pounding as if it wanted to burst out of my body. I tried to stay calm. I told her I was fine… just a little dizzy.

As soon as I got up to splash some water on my face, I lost consciousness. Darkness. I remember nothing. At that moment, it was just my grandmother and me in the house. She told me later what had happened, that I had collapsed on the floor for five whole minutes. Terrified, she immediately called my mother to tell her what had happened. My mother then called an ambulance and informed my father, who ran as fast as he could to my grandmother’s house. He told me later, “Michael, I thought it was all over.”

The first days in the hospital passed in an atmosphere of fear and waiting. The nights were endless. Silence. Insomnia. Anxiety. The corridors were empty. I walked nonstop because I could not sleep. But my parents were always there. Every night, in an uncomfortable chair next to me. Family and friends like beacons in the dark. Without them, I do not know what would have happened.

The first tests, the examinations, the discussions with the doctors… everything was complicated. I realized quickly that this was not something simple. The diagnosis finally came: Brugada Syndrome type 1. The most dangerous form. What is it? It is not just a medical term. It is fear. Uncertainty. Limitations. Sometimes the heart gets confused. Its rhythm becomes dangerously irregular. Fainting. Cardiac arrest. Without warning.

Fear never goes away. Fear that you might not wake up the next morning. Fear that a single episode could be the last. You learn to find strength in small moments. In a conversation with a friend. In a look that calms you. In a smile that changes your day. In phone calls with my mother and father, who asked every minute if I was okay, and in my grandmother’s daily calls to check on me, I realized how important their presence was. Every word from them calmed me and gave me courage.

The days passed slowly, and every night was a test. Sometimes I sat by the window of my room, looking at the streets outside, reflecting on how fragile life is. How easily everything can change in a moment. The small details became significant: the sound of a phone, the feeling of fresh air on my face when I was taken for tests.

After a fainting episode, the doctors decided I needed an implantable defibrillator. When it happened… I felt like life was given back to me. The feeling of the weight that was suffocating me suddenly lifted off my shoulders. It was the moment I understood that technology can save lives, but also that we must be careful with our health.

In Greece, to get approval for a defibrillator, you must have already experienced a cardiac arrest. Many remain exposed. Some show warning signs but are not saved in time. Others who had an episode… did not make it. The uncertainty was terrifying. I thought about how many people might be going through the same fear without any help.

From this experience, the idea for my project was born, Hippocrates AI Assistant. An artificial intelligence platform that helps doctors make timely and accurate diagnoses of heart conditions. I want to help save lives. To reduce mistakes. The most important thing for me? I never want anyone else to go through what I went through.

During my hospitalization, I heard stories from other patients. Children fighting similar problems, families with no hope, people who did not make it. Every story taught me something: to appreciate life, every smile, every moment we take for granted.

Hope can be born from fear. Strength can be born from difficulties. Every day is a chance to continue, to dream, to move forward.

Do not let hardships break you. Life can always give you a second chance. And believe me… it is worth taking it.

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About the Author

Michael Grivas is 27 years old and has learned to live with Brugada syndrome. His experience has taught him to appreciate calm moments, the people around him, and the small joys in life. He hopes that his story will help others find light even in their darkest days. Michael is Founder & Head of Vision of Hippocrates AI Assistant Project.

By John Britton, MD

My head was planted in spilled milk, cereal and vomitus on a table in the Fairfax Hospital physician’s dining room. I had fainted without any warning, no dizziness or nausea or other prodroma.

I woke up almost as quickly as I had fainted. I had a wheelchair under me driven by Sam Lee, one of my anesthesia partners, at formula1 speed to the emergency room.

In the ER I was perfectly oriented. I had no fever and told the doc that I was feeling perfectly fine before I fainted. The EKG was normal. I was discharged and drove myself home.

 I would never come to work as a pediatric anesthesiologist ever again.

I was anxious to get home because I had to pack for a trip to Vermont to take my mother to see her oncologist at Dartmouth. The next day I flew from Bethesda, MD to Manchester, NH, got a rental car and started driving to little Barnard, VT. I was energized to get going. My mother was scared. Her mouth cancer had recurred after three major surgeries.

I felt fine on the flight, but along the drive I started to get dizzy. I got off I-89 and drove through Sutton, NH. I weaved my way through town and finally found a secluded strip mall to take a nap. I thought I was just tired, which was kind of normal as I had long workdays and nights on call.

A young cop rapped on my window. “We got a call that you were swerving all over the road.” The breathalyzer was negative, and I could walk in a straight line. His supervisor swore that I was on narcotics but the blood test at the New London hospital was negative. The cop took my last $20 from my wallet for “bail”.

My rental car was taken. I got on a dark bus to White River, VT. Erin, one of my colleagues, said that I called her from the bus and told her that the cops had taken my car. I have no recollection of the call.

The next morning a volunteer from the community drove my mother and me to Dartmouth for her oncology appointment. I wandered around the waiting area and atrium of the hospital in a fog.

The next day I started to hallucinate at my mother’s house. The ambulance took me to Gifford Hospital in Randolph. The CT scan showed a whiteout of my right brain, and the spinal fluid was full of lymphocytes. I had a virus in my brain.

In the ICU at Dartmouth Medical Center, I started to seize and breathe in kind of a death spiral way. My family was told that I may not survive and if I did my brain was badly impaired, anyone’s guess how I would function.

I don’t remember how I found out that I had a Herpes Simplex 1 encephalitis, a rare infection. I was given IV acyclovir and anti-seizure meds. I had a curious clinical response: interesting case, no emotion. I grew up in Vermont in a family where feelings were stuffed. To add to this was my medical training: dispassion to step away from emotions.

To be closer to home in Bethesda, MD, I was transferred to Johns Hopkins in Baltimore. This was the beginning of a long brain rehabilitation, fraught with cognitive function and memory loss. I had a psychopomp experience (a Greek word for a figure that beckons you to a different world), a vision of a jester beckoning me to another world, death. I could not recognize faces, had difficulty walking and my short-term memory was gone.

My transport orderly decorated my new cane for trips down the hallway. I had daily visits from colleagues who dealt with metro Washington to come see me. My neurology floor nurse sat with me most dinner times. All these people were so compassionate.

Before returning home, I stayed at The Hebrew Home of Greater Washington nursing facility for a month. Most nights there was noise everywhere. At 61, I was the youngest patient by far, people walking around in a daze being ordered around by foreign speaking nurses.

I became part of the Brain Recovery program at the National Rehabilitation Hospital in downtown DC. Patrick from a medical taxi service drove me there daily for three months. I was with a group of 10 people who were scarecrows looking for a brain.

I realized how lucky I was to have a stable family and finances. The despair of my fellow patients was so sad, some with no family, some with no money, some with difficulty communicating, some with severe mobility issues and some with a combination of difficulties.

The milestones for recovery from a right-brain injury are different than a left-brain injury. The left is where speech and memory originate. The improvements in left function can easily be checked off. The right has less defined functions. Classically it is the creative hemisphere. As my neurologist told me: we really don’t know much about the right brain because all the research money goes to left brain discovery. The former director of the brain bank at the National Institutes of Health, someone who has cataloged thousands of human brains, told me that he had never seen or heard about a patient who had had a Herpes encephalitis that manifested as a right brain injury.

Half of my right brain was gone, and doctors were baffled. I was a unicorn, a scarecrow without a brain. I was on my own.

I became obsessed with neuroscience, specifically the difference between the left and right brain. I read thousands of pages regarding brain anatomy and function, neuropsychology and religion. I learned that our brain has two hemispheres that function differently even though there is connection between the two. We are born with 80 billion neurons (brain cells) that cannot regenerate. The work around is the 20 trillion connections (circuits) that can be “rewired” to compensate for destroyed neurons.

My right limbic area deep in the interior was destroyed, a rare area to be injured. The limbic area regulates emotion, does facial recognition, initiates artistic endeavors, appreciates music and is where humor is initiated. I asked some of the world’s experts in neurology about a program to compensate for my right brain injury. They had no answer. They had no experience with my type of injury.

After Hopkins and the nursing home I was alone at home most days. My wife who had a busy surgical practice was gone every day. I had no job and no purpose. My left brain kept asking: why aren't you working, why can't you focus, and why aren't you accomplishing more?  I lost my driver’s license.  I got to practice French with my West African Uber drivers.  I had to constantly keep track of disability applications, medications and appointments. I was mentally fatigued because the virus had caused a profound inflammation in my brain. How was I going to get through the day?

My speech therapist told me that right brain injuries are more difficult to rehabilitate because the left takes over with all of its anxious delusions. When the left brain becomes the master, thoughts are not reality tested by the right brain. There is catastrophic thinking, unregulated, which stokes the fire of anxiety. My days were filled with phone calls and filling out forms, disability insurance, health insurance and Uber. The anxiety was overwhelming. I sometimes would kneel and rest my head on the floor to release the tension in my eyes. The word “should” was used all the time by well-meaning people: you should do this, read this, call this person or watch this program. I hate the word should.

I had never felt so helpless.

The anti-seizure medication, Keppra, made my depression worse. It took months to find an alternative medication, lamotrigine. With antidepressant medication and the meditation method Body Centered Inquiry (Focusing), developed at the University of Chicago and taught by renowned instructor Jonathan Foust, you can explore your body's felt sense to better understand your experiences.  The instructor offers prompts to look at what and where you are having a certain feeling. It evoked vivid imagery of tranquil and aesthetically pleasing locations.  I had peace that I had not experienced in years.  I felt that my right brain was now awake. Deep meditation studies using functional MRIs explained this.  My mind became clearer. I could sleep. My anxiety and depression lifted.

Despite these improvements, I can no longer practice medicine because of a profound brain fog that is only partially propped up with Ritalin and Modafinil, potent brain stimulants. I have a new life, one that I never would have ever imagined, with communities of people I had never known before. The journey has taken me to incredible places of suffering and joy. I now feel whole, a place of equanimity, a place of wisdom and love.

I am no longer a scarecrow on the Yellow Brick Road. I am mindfully present wherever I am.

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About the Author

John Britton, MD is 71 years old and grew up in Vermont. He has two children and two grandchildren. John went to the University of Vermont Medical School, eventually becoming a pediatric anesthesiologist which he practiced for 30 years. He currently lives in Bethesda, MD.

At our recent collaborative storytelling event, Kimberly Warner, author of upcoming memoir Unfixed: A Memoir of Family, Mystery, and the Currents That Carry You Home (October 2025), shared her inspiring personal health journey alongside one of her healthcare providers, Edythe Vickers, N.D., L.Ac.

By Hannah

My name is Hannah and on May 13, 2024, my life changed in a way I never could’ve seen coming.

There wasn’t a dramatic moment. No accident, no single day that split my life into a before and after. I didn’t fall, I didn’t break, I didn’t bleed. Instead, I was diagnosed with a chronic, life-limiting illness called Myalgic Encephalomyelitis, M.E. for short. Some people know it as Chronic Fatigue Syndrome, but don’t let the name fool you. This isn’t just tiredness. It’s a complete shutdown of your body and your life. It’s invisible but it’s very, very real.

Before M.E., I lived what I thought was a normal life. I went to school, worked long days, walked my dogs, stayed up late, laughed with my friends, helped cook dinner and then woke up and did it all again the next day. I was active, spontaneous, full of plans. I never had to think twice about how I spent my energy.

Now, every choice costs something.

If I have a shower and wash my hair, I might not have the strength to walk the dogs. If I go out with friends, I know I’ll be in bed for the next week just to recover. Sometimes I don’t even bother trying, because I already know the price and it’s too high.

M.E. is not just fatigue. It’s chronic exhaustion, no matter how much I sleep. Whether it’s 8 hours or 16, I wake up feeling like I’ve run a marathon. My muscles constantly ache; it feels like my body is dragging itself through sand. I get tension headaches that stretch across my skull, heart palpitations from standing up, brain fog so heavy it’s like my thoughts are underwater. My digestion is a daily battle. I’m sensitive to light, to sound, to movement. Some days, I have to lie in the dark in total silence, just to cope.

And still, people look at me and say, “But you don’t look sick.”

That’s the hardest part. The invisibility. From the outside, I look fine. I smile. I might post a picture. I might show up for a couple of hours. But people don’t see what happens after. They don’t see the crash. They don’t see the rest of the week, where I’m in bed, in pain, wiped out from the smallest act of pretending to be okay.

Being diagnosed wasn’t an easy process. It took me nearly seven years of pain and unanswered questions. I visited the doctor every week, experiencing new symptoms and constantly worrying about my health. I had years of viruses on and off from the first day of year 7, all through school and still, to this day I get many viruses when I exert myself. I had many symptoms every single day, some of which include temperatures, achey joints, headaches, digestive issues, throat problems, fatigue— the list goes on and on.

After giving up hope of ever being listened to by professionals, a new doctor referred me to an online M.E. team that spoke to me over the phone about my symptoms, how I’ve felt and how long they’ve gone on for and they instantly responded with “You have an illness called M.E.” In that moment I cried happy tears knowing I finally had an answer and could get help. It was like a weight off my shoulders and although it took me a while to get my head around it was so relieving to finally know what was wrong with me.

I ended up missing 2 out of 5 years of school in total because my body just couldn’t cope with 5 full days a week. I lost many friendships and felt very isolated during my school years and even now, having had this illness for such a long time I still feel isolated at times. I see people my age living their lives, going on nights out, going on holiday and I think to myself, will this ever be me? But there is still hope.

Even the smallest things become massive. A cold wipes me out for days. A spot on my face gets infected because my immune system can’t fight off even the simplest illnesses. My body feels like it’s constantly breaking down and yet I’m expected to carry on like nothing’s wrong. I grieve the person I used to be. She was so full of life. She could go all day, no limits, no calculations. Now, I plan everything. Do I push through, or do I rest? Do I say yes and suffer later, or say no and feel the guilt instead?

People ask, “But what do you do all day?” I want to ask them back: what does it take just to be okay?

Because this illness affects everything. Physically, emotionally, mentally. And it’s so lonely. There’s grief, and frustration, and sadness, and fear. Fear of being forgotten. Fear of being misunderstood. Fear that this is how life will always be.

But even in the dark, I’ve found something unexpected: strength.

Not the kind you see in movies. This is quiet strength. The kind that wakes up and keeps going, even when it hurts. The kind that rests without guilt (most of the time). That listens to a body that screams, “No more,” and still finds ways to exist, to survive, to feel. Strength that doesn’t always look like progress, but still counts.

My strength didn’t come from being pushed to recover, my strength didn’t come from the thought of suffering for the rest of my life; it came from knowing that no matter what happens or how I feel, my friends and family are always here and they will do anything to help me feel “normal”. I got 2 dogs to help with my mental health and they’ve been my rocks through these tough times.

Although it took my friends and family a while to understand and believe that what I was experiencing and how I was feeling wasn’t just in my head, my mum always knew there was something wrong even just by looking at me. Since my diagnosis, some family members have done their research and come with me to support groups to help them understand what I am going through.

This illness has taken so much from me, but it’s also taught me so much.

It’s proved a lot of factors of life shouldn’t be taken for granted: e.g. being able bodied and having “stable mental health.” But no matter how I look or feel my mum is always by my side cheering me on and I will forever appreciate her for that.

It’s also shown me how fragile life really is, and how strong people really are. It’s taught me patience and perspective. It’s made me notice things others don’t, like invisible struggles, small victories, and moments of peace that feel like gold dust: being able to shower, wash my hair and walk the dogs all in one day or going out with my friend for a meal and then to get my eyebrows done. It’s taught me that even when everything feels broken, there is still beauty to be found.

I do have some good days; they are outnumbered by the bad days, but I still sometimes manage to do basic everyday tasks. On my bad days I am still able to get up and dressed, brush my teeth and make myself food, but that’s about it. Whereas on my good days I can do all this and still have energy left to do the things I enjoy.

I didn’t choose this. But I do get to choose how I respond to it. And even on the hardest days, I choose to keep going.

Because I’m still here.
And I’m still me.

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About the Author

Hannah is nearly 19. She’s learned how to live with illness and her favorite thing to do is play golf when she’s feeling okay. She hopes her story can help someone else in the same shoes feel more positive.

By Val Walker

Photo by Marius Butiuc

“Wherever there are birds, there is hope.” -- Mehmet Murat Ildan

Rachel Carson, in her book, The Sense of Wonder, encourages us to share our love of wildlife with our children and grandchildren. Through wondrous moments with young, curious, and open minds—unabashed and pure—our loved ones witness and feel our love of life—contagious moments of enchantment. These fleeting bursts of awe, when walking in the forest with a grandchild, or stargazing with our partner, or spotting a brilliant red cardinal landing on our fence, can offer a timeless sense of intimacy and meaning.

We never forget these little pockets of magic throughout our lives that seem to come to us out of the blue and for no apparent reason. These little surprises of wonder can bring a sense of relief from overthinking and worry, such as spotting a bird on an inexplicable mission who comes remarkably close to us. When we are sick, lonely, or grieving, we might be amazed that, despite the dense, painful thoughts dominating our minds, a chickadee lands by our window and chats, staring right at us, as if to call us out of our misery. At least for a few seconds.

And the whole tone of the day changes.

My grandmother, Viv, loved chickadees. When we snapped string beans or folded laundry on her screened porch long ago in Maryland, as I prattled on about my dreams or asked her about God, she would suddenly stop me when she heard chattering chickadees, her favorite birds. “There they go again, talking up a storm, just like you.” She chuckled, shrugged, shook her head in wonderment, and I stopped talking. I listened closely to the chickadees and to the wind blowing through the branches of hickory trees and over the orange zinnias waving in her garden. I loved her love of chickadees and her passion for wonder that filled me with reverence for wildlife. Ever since, no matter how alone, or ill, or sad I’ve felt in my seven decades of life, Viv’s spark of wonder for chickadees has inspired me to follow my passion for the beauty of birds.

Birds unexpectedly flying near us have given humans breathtaking moments that have changed lives for many thousands of years. In all cultures, wild birds have beckoned our sense of wonder in captivating ways, as signs of hope, as muses for music, as angels, spirits of loved ones and ancestors from the afterlife, or as amazing creatures to cherish.

Long before the digital age and popularity and mass consumption of finding our totem birds and spirit animals, I was mysteriously drawn to blue herons. My calling to follow herons is an honest and soulful yearning that began at a dark, hopeless time when I was about to end my life alone by a river back in 1979. Viv had just died suddenly of a heart attack, and I’d been running from a violent partner for months, ending up homeless, destitute, exhausted—and I wanted to leave this world. But amazingly, a majestic blue heron circled above me and landed stunningly near me, staring at me with piercing eyes as I was about to overdose with a bottle of pills. As if the heron offered divine intervention, I stopped-- and ever since, I’ve never again attempted suicide. I’ve followed herons to their watery sanctuaries for decades and I thank my love of these birds for keeping me alive in times when I’ve wanted to give up on humanity and my life.

Heron Lore

Not only have I loved blue herons, but I’ve been inspired by accounts of human encounters with herons. The Egyptians worshipped the Bennu, a type of heron, that flew across the Nile into the rising sun, entering the realms of the afterlife and returning to earth at sunset.

St. Columba of Scotland in AD 560 adored a blue heron, after finding this injured bird with a broken wing after a storm on the rocks on the Isle of Iona. He asked his fellow monks to help care for the heron until they could release this resilient creature back to the sky over the Irish Sea. St. Columba and the monks witnessed the return of the heron every spring flying down to their monastery as if to give thanks.

The Hitchiti Tribe of the Muscogee-speaking people of Georgia teach heron lessons to their children of the patient, determined, and wise heron in their Heron and Hummingbird tale.  

Heron lore includes glorious poetry about the grace and stealth of herons such as Mary Oliver’s “Heron Rises from the Dark, Summer Pond,” Longfellow’s “The Herons of Elmwood,” Elizabeth Bishop’s “Seascape,” and others.

A popular Japanese film by Hayao Miyazaki, The Boy and the Heron, was released in 2023 with astonishing and awe-inspiring animation. This heron guides the boy to different times and other dimensions to reclaim his past and to envision his future.

My favorite literary work about herons is the short story, A White Heron, by Sarah Orne Jewett. We learn the tale of a young girl and her secret (and sacred) relationship with white herons who have built nests high in tall fir trees. She finds her strength and independence through protecting these threatened birds from hunters—a coming-of-age story in praise of herons!

What I find enormously healing and meaningful is to share my love of herons with others through literature, art, film, videos, as well as walks by rivers and streams.

Healing Through Our Love of Birds

But whenever I see a chickadee, I remember my grandmother, Viv. Through every single characteristic of that chatty, busy little bird, through its movements and songs darting through the pine trees and maples, I hold the everlasting essence of Viv, who left this world 46 years ago.

And when I spot a red-tailed hawk, I think of my father who died in 2021. He adored these fearless, determined birds and swore they gave him the will to stay alive after he was diagnosed with vascular dementia. Decades ago, on a walk in Maine when I showed him my heron sanctuaries along the rocky coast, he told me of his love of hawks and how they gave him a sense of peace and reverence for beauty. “My hawks are to me like your herons are to you.”

Noticing-- and being willing to stop and notice-- a favorite bird of a loved one allows us to see our person in a whole new light. It deepens our love for them.

These fleeting moments with birds can restore us after trauma and loss and deepen our bonds with loved ones (still living with us on earth as well as those who’ve moved on). As for the herons I love, and the chickadees and hawks loved by my grandmother and father, I can attest to the faith of the nature writer, Terry Tempest Williams. “I pray to the birds because they remind me of what I love rather than what I fear. And at the end of my prayers, they teach me how to listen.”

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About the Author

Val Walker is a contributing blogger for Psychology Today and the author of 400 Friends and No One to Call, released in 2020 with Central Recovery Press. Her first book, The Art of Comforting (Penguin/Random House, 2010), won the Nautilus Gold Book award and was recommended by the Boston Public Health Commission as a guide for families impacted by the Boston Marathon Bombing. Val received her MS in rehabilitation counseling from Virginia Commonwealth University and is a rehabilitation consultant, speaker, and educator. Her articles, quotes, and Q&As have appeared in the New York Times, AARP, Babyboomer.com, Next Avenue, Caregiver Solutions, TIME, Good Housekeeping, Coping with Cancer, Boston Globe Magazine, Belief Net, Marie Claire, and Sweety High. 

Val’s new book, Healing Through Wonder, will be released with Bloomsbury Publishing in January 2026. You can also learn more about the “Healing Through Wonder Project” through their YouTube channel, The Sun Will Rise Foundation, and Support After a Death by Overdose (SADOD) project.

Keep up with Val at www.ValWalkerAuthor.com

By EDC

I was born in the early 1960s in the South and that is where my migration up the East coast began. My parents and I moved to Baltimore, where my brother was born when I was three-years-old. In 1971, just before I entered 4th grade, we moved to Winchester, Massachusetts.  I looked forward to living closer to our extended family, especially our four cousins.

In my childhood, I had good friends and good health. While I was mainly focused on academics, I also enjoyed many activities, such as tennis, ice-skating, varsity track and cross country and hikes in the White Mountains. I attended Wellesley College and junior year I spent at Dartmouth College.  On Wellesley’s beautiful campus, I participated in dorm crew on Lake Waban, whereas, at Dartmouth in NH, I enjoyed river tubing and cross-country skiing.

In June, 1984, I was a 22-year-old college graduate. I was fortunate enough to have the opportunity to visit Europe with my cousin Ted. That was a gift in multiple ways from my mother, remarkable given that she was a single mother. We were both novice travelers guided by the book Let’s Go, Europe! We saw 8 countries in 8 weeks, including England, France, Switzerland, Italy and Greece. All we needed was our EuRail passes, youth hostels and directions to American Express offices to exchange currencies in each country. (This was well before the Euro).  

I remember vividly standing with Ted in London in a classic red phone booth. We wanted to let our families know that we had arrived safely. Wearing our gray soft frameless backpacks with a bunch of English coins in hand, we tried multiple combinations of coins before we found the ones that worked. Success!

Memorable highlights included Grindelwald, a small village nestled in the Swiss Alps where we hiked through meadows and viewed snowy peaks. In contrast, Ted and I also explored the black sand beaches of Santorini, climbing on donkeys to reach our blue-domed hostel.  This experience sparked my love of travel.

Upon returning home from this amazing trip, I faced some major life decisions. I decided to relocate to Washington DC. I wanted the experience of living in another international city. One of my college roommates had recommended Thompson-Markwood Hall, a Young Women’s Christian Home, which was right across from a Senate office building. I took her suggestion because it was a great location close to Union Station, the Supreme Court and Capitol.

There were two rules, no men in our rooms and no alcohol, which made us feel a little paranoid about whether we could even buy a bottle of wine as a hostess gift.  The hall felt like something between a boarding house and a dorm, and I made some good friends there.

Next came a position as a unit clerk in the medical ICU at The National Institutes of Health (NIH) Clinical Center, its research hospital. Three of the doctors provided me with their insights about their patients and the diseases they were treating. In trying to diagnose a patient’s illness based on symptoms, medical students learn “When you hear hoofbeats, think horses, not zebras.” At NIH, I was told to think of it as a safari.  Most of the diseases studied there were not found in the general population, such as the emergence of AIDS in the 1980s.  Those doctors became role models for me.

While working, I studied for the MCAT exam, and prepared applications for medical schools. Unexpectedly, I had my first unusual symptom. For 2 weeks, I experienced numbness in my entire right leg. It puzzled me, but I wasn’t too worried. A local primary care doctor recommended that I see a neurologist, but the numbness resolved prior to the appointment, so I canceled it.

Later that year, at my cousin Alicia’s wedding, I walked down the aisle as her maid of honor. It was the music that carried me along to the altar. Alicia is like an older sister to me and it was a joy and an honor to be part of her wedding.

Months later, I had another new symptom that was harder to ignore. My friend and I had just seen a movie and were waiting outside for a taxi, when suddenly I was seeing her face in double vision. Even though it only lasted ten minutes, it was disconcerting during that time.

When I eventually did see a neurologist, he advised me to check into his hospital for a workup. He was calm, but he made it clear that it did require immediate attention. I decided to fly home to Boston for my work-up. I had a head CT, but the results were “inconclusive.” It was 1986 and MRI was not yet available as a diagnostic test.

As part of my work-up, the doctor privately questioned my mother about whether I might be a hypochondriac.  My mother emphatically answered that I had no pattern of feigning symptoms or even exaggerating illness. It bothered me that I was not being taken seriously, but Mum had squelched this supposition.

Although this experience was upsetting, I was not disillusioned about entering the medical field. I compartmentalized the experience.

While these were lessons in what I did not want to do in my own practice, I also had met some excellent clinical doctors whom I did want to emulate, especially their knowledge, compassion, and dedication.

In August, I was accepted to Albany Medical College. My mother’s friend had brought me a giant teddy bear wearing scrubs as a congratulatory gift. As I boarded the plane, I waved with the teddy bear to my family. My triumphant moment—I’m on my way!

By the next weekend I had met Joan, an Albany Law School student who became one of my roommates, and, over time, a life-long friend. Gradually, I settled into the pace of med school, studying large volumes of detailed material, such as the Krebs cycle in Biochemistry and the entire body in Anatomy, followed by exams. My studying partner was Eileen, an ICU nurse who was working towards her MD. She was very helpful, and when she reached the clinical clerkships, she soared.

Now, I began experiencing coordination problems along with bladder urgency and found myself in a urologist’s office. The senior urologist commented to his resident about my markedly abnormal results. Already feeling vulnerable as I was lying there on the exam table, my thought was "we don't even know what this is and it's out of control." The doctor had spoken over me to his colleague as if I were not even there. At the follow-up visit, I told him that I wished that they would have conferred in a separate space, or at least spoken to me first. We agreed that I should find another doctor. My first self-advocacy!

Two months later, I had enough symptoms–foot drop,  lack of coordination, double vision again– for my Albany neurologist to recommend an inpatient stay right away for more testing. Now, I felt scared. My mother drove out with her fraternal twin sister, Karen, who is my godmother.

By now, brain MRI was available and a technician informed me that mine was abnormal. I began crying as I waited to return to my hospital room. I felt so alone. Back in my room, the neurologist explained that I had multiple sclerosis (MS). As my mother, aunt Karen and I huddled, hugged, and cried, Karen suddenly remarked that there must be an "evil genie" who caused my MS. It was so unexpected, and, yet, so like Karen, that it made us all laugh and cry simultaneously.

 At that time, in 1987, no therapies existed that specifically targeted MS. I had been worried that the testing might prove inconclusive again, but I was unprepared for the reality of getting a diagnosis for which there was no treatment. Through this, I learned the importance of having family and friends in trying moments in our lives, and that reality can be overwhelming.

I needed to figure out how to make my new reality work. The same doctor who wondered if I was a hypochondriac also told me that I had a “mild case” of MS. How could he know that? How could anyone? I was advised that most people can lead a normal life, “just try to alleviate stress and fatigue." Medical school? Residency? This was going to be challenging, but I didn't want to give up on my dreams. I stayed in school, with some modifications to my schedule. One of the deans was a neurologist who helped me troubleshoot issues with accommodations. This was before the Americans with Disabilities Act (ADA), passed in 1990.

Fortunately, I had a senior doctor on the faculty who had MS and used a wheelchair. He told me that for economic reasons, it would be important for me to finish my training. He said he had residents who could help him with physical tasks he couldn’t do himself, but he had knowledge and qualifications. He emphasized, “Do whatever you have to do to get that degree. Crawl for it” I agreed with him.

With help, I completed part of the second year curriculum with my original class, then completed the remaining portion with the class behind us, the class of 1991. To stay strong, I swam laps in the local community pool on a regular basis. At that point, the neurologist was classifying my MS as “relapsing, remitting,” but I required a cane two years after my diagnosis. The pacing of my medical school experience made a big difference in completing my studies.

On some occasions, I needed to take 1-2 weeks away from my clinical clerkships to receive IV steroids and rest. I recognized that a clinical residency was going to be too physically demanding. I chose pathology because it offered interesting study, career paths and did not require overnights.

I returned to NIH to begin their pathology program in July 1991. It was a four year residency. My internship year proved harder than I had imagined. At that point in my MS journey, I was using a cane, leg braces, and had a scooter to navigate my way around the hospital and campus. 

Even without overnight-call, the months on the surgical pathology service were exhausting. Although I came into work on the weekends, I still struggled to keep up with the workload. By March, I needed some extended rest and a friend drove me back to Boston. At the same time, I also began to realize that pathology wasn’t my calling for my medical career, my passion for choosing medicine. So, I decided to do some research in my own department while I considered other options.

I decided to apply to masters in public health (MPH) programs to work with different patient populations, rather than aiming for a clinical practice of one-to-one patient care. I landed at the Johns Hopkins School of Public Health, where I gained alternative expertise to pathology, but also had multiple courses which tied in to my past work at NCI. The usual part-time pace for the MPH degree was three years. In my case, while also working full-time, it took me five years.

In 1993, the year I started the MPH program part-time, the first FDA approved MS drug, Betaseron, came to market. Despite trying this and other subsequent MS medications, my symptoms continued to progress.

A decade earlier, at my cousin Alicia and her husband Tom’s wedding, I walked down the aisle as a bridesmaid unassisted.  When my brother Bob married his wife Christine, I relied upon two groomsmen to escort me. Alicia and Tom’s daughter Gen and Bob and Christine’s daughter Katie are my goddaughters. They both have Elizabeth as a middle name, which is special to me.

At this time, I returned to my strategy of managing my MS with exercise. I did a water therapy program at the local indoor pool, went to see a physical therapist, and did therapeutic horseback riding, which was my favorite. Glenelg, where the farm was located, was an hour away, and I went early Sunday mornings to avoid the heat. The solitude and the scenery of the drive itself was therapeutic. The horse’s name was Grumpy. I loved that the equine therapist would take me along a trail that went over a little brook and through some trees. I could never have navigated that terrain on my own.

I graduated with my MPH degree in 1998. 2000 was an important year for me, a liberating one. I began using my first power wheelchair and acquired a new adapted van, which I could drive independently. Whereas I walked short distances with my rollator rolling walker – hand brakes and built-in seat – suddenly my powerchair made almost all my tasks of daily life, including fun (going to the movies or meeting a friend) much easier. 

In 2002, I relocated to Boston to work at Dana-Farber Cancer Institute in the Zakim Center for Integrative Therapies and Healthy Living. I had my van and wheelchair driven to Cambridge. The center has offered acupuncture, massage, nutrition counseling, and other therapies to help patients manage cancer related symptoms such as pain, fatigue, and nausea.

As a public health educator at the Zakim Center, I was providing cancer patients and oncologists with available findings on the purported therapeutic uses of herbs and supplements. Relaxation and stress reduction continue to be goals of the center’s work, too.

In my own life, I found that massage therapy and acupuncture provided relaxation and increased my energy after each session. I tried modified yoga, qi gong, and meditation.

As we did acupuncture research at the Zakim Center, in 2008 we went to Shanghai for a conference with our Chinese counterparts.  I had traveled to several West coast conferences in the past without difficulty.  My desire to experience this fascinating country was immediate, but I realized I would need assistance, which aunt Karen was happy to provide. I could not have managed the 15 hour flight or many logistics at the hotel and destinations without her help and companionship. During our two-week stay, I did not see another Westerner in a wheelchair.

After my meeting, we took a flight to Beijing. We hired a guide named King, a Korean man who spoke fluent Mandarin. When needed, he would physically carry my manual chair up stairs.

I had learned there was a section of the Great Wall that we could access via cable car. When our cable car arrived, King disassembled my manual chair quickly. Karen and I faced forward as the cable car ascended to the Great Wall, while King rode backwards with the chair. By going in the morning, we missed the heat of the day. When we reached the top after our short ascent, King nimbly reassembled my wheelchair. I am so glad we took the time to see this wonder of the world. 

As part of the trip, we visited the Forbidden City. Among the vast sea of people were some Chinese team members for the upcoming Paralympic games that summer. I would not have expected that four years later, I would be sitting in a London stadium with my cousin Ted watching an evening of track and field at the Paralympics.

By that time, Ted, the same cousin who was my co-adventurer after college, had been living in England for over 20 years and was a dual American-British citizen. Ted arranged for me to stay in an accessible room at Queens College, Oxford University. He served as my driver and custom tour guide. Ted rented a scooter so that I could explore the historic part of the city independently, then I switched to my manual wheelchair in London to navigate the crowds at the Paralympics. I cheered for the athletes from all the countries, admiring both their athleticism and ability to adapt to their sport, such as doing the high jump with one leg. What impressed me about the British crowd is how enthusiastically they cheered for all the winners.

On my flight home, it amused me when someone asked me if I had competed in the Paralympics. It was only at that time of my life that I began to strongly connect with people with disabilities, both on volunteer committees and as friends. It was a relief not to have to explain about the challenges of getting around, equipment problems, and some positives about problem solving skills, being resourceful and enjoying social get-togethers.

In 2013, a friend told me about sessions held at Tufts University School of Medicine for students in the Family Medicine clerkship to learn about patients with disabilities. In this setting, students performed a practice interview with people who had either a physical disability or were on the autism spectrum. The students enjoy that we incorporate aspects of our real diagnosis and lives into the standard, role-play interview.

I use this as an opportunity to advise students that people with disabilities often are knowledgeable about their own conditions and, in many cases, lead full lives (employment, relationships, other interests). I continue to participate in this exercise and mentor students both as a patient and as a retired Family Medicine faculty member.

I also have worked on cross-disability commissions or boards, both as a member and in some leadership positions. I remain actively interested in working on accessible transportation with the Riders’ Transportation Access Group (RTAG) with the MBTA.

In 2023, it was no longer sustainable to continue living in my Copley Square accessible apartment. I had come to The Boston Home seating clinic, but it was a very different experience to transition to my new home in August, 2023.

It was difficult at first. However, the benefits of living at TBH quickly became apparent. I realized to what extent my world had narrowed as I began connecting with a group of new friends and the strong sense of community. It’s been great to listen to live music right on-site, and I’ve joined a watercolor class, which has improved my ability to observe colors and patterns in the natural world.

Working with Laboure nursing students I provide them with some tips and instruct them about the effects of MS on my own body. For example, we discuss my baclofen pump and how well it keeps my spasticity under control.

These days, my travel extends to attending local performances and museums, as well as van trips to Southern New Hampshire and Cape Cod for special family celebrations. Fortuitously, my nieces, Katie, Chelsea, and Alli, live nearby in South Boston. In addition to my extended family, who come from Vermont, my cousin Rob and his wife Diane visit from closerby, North Attleboro. To my delight, visits to The Boston Home now include the next generation in my family, my cousin Alicia’s grandchildren. Lucky me!

By Maggie

I was born December 2, 1954 in New Bedford Massachusetts, the 2nd child of Edward J. Harrington Jr. and Mary Madeleine (Faucher) Harrington. My parents had recently settled back to New Bedford - Ed’s hometown–after a stint in D.C. where he was assigned to the Pentagon as an attorney during the Korean conflict.

As anyone who knows about the 1950’s era knows, new mothers were kept in the hospital for about a week after giving birth. My mother wrote a note to a girlfriend soon after getting home telling her "Margaret's going to be a husky"!!!! and  also explained one day she was reaching into the fridge to get the baby a bottle - and collapsed. She was able to get over to a telephone and reached my father, who in turn called his mother and sister. Dad got my mother to the hospital where she was eventually diagnosed with a glioblastoma which is an extremely fast-growing fatal brain tumor–the type that Ted Kennedy and Sen. John McCain had.

My Dad brought her home (actually to my grandparent's house) for Christmas, where the one photo showed her very worn down and frail. I've been told she did not recognize 'the baby'...three-week old me. She went back to the hospital and died there February 2, 1955. I was exactly two months old.

After my mother’s death, my dad, sister and I moved permanently into his parent’s home. He was the oldest of 5 kids and there was plenty of room.  He still had 2 unmarried sisters (1-engaged,1 seriously dating) who lived at home, and his youngest brother was in high school.  It was a delightful and busy household, with a large yard with a huge flower garden full of roses and a swingset. My grandmother remarked to my older aunt that I was her last baby.  (I wonder if she handled getting up at night, and washing all the diapers…) But eventually I was walking and talking and trained with the best of them.  My grandmother was actually a graduate of Bridgewater State College ‘17 with a degree in education. He had 6 older sisters, but my grandmother was the only one who went to college. She taught first grade for years until she married. Married women weren’t allowed to teach back then. My grandfather was also an attorney and my dad shared an office with him:  Edward J. Harrington Sr. & Edward J. Harrington Jr.

Both my grandparents were from large Irish/English immigrant families and all of the siblings looked up to them as the smartest and most successful in their families. Still, my grandmother remained the youngest sister of many sisters and fell under their judgments her whole life (of course). After they married, my grandparents lived in a large house on a main street in New Bedford - a whaling captain’s home - the type with a cupola on the top meant to watch for the whaling ship’s return to the harbor.  This became my home. Both my grandparents were devout  Roman Catholics and our home was directly across the street to a Roman Catholic Church, St. Lawrence Church, with a Catholic elementary school, and a Catholic High School, both staffed by the Sisters of Mercy, on the same block.

The lack of my mother in the picture was handled very matter of factly.  It was said she was already living with God in heaven, and that was that.  On Memorial Day weekend, my Dad would take us to her grave and plant flowers and say a prayer.

About five years after my mother’s death, my Dad began dating again.  In 1960, I started 1st grade at the Catholic elementary school,- HFGS  making some friends I still have to this day.  St. Lawrence’s parish was a fairly large and successful parish, with many WWII vets who became MDs, DDS, etc. .  The diocese had us students involved in (what was at the time) a computer generated aptitude test.  The results were presented to the parents one evening.  They explained my class scored higher than any other class - and they displayed a graphic showing a 99%ile. I found out after the fact that it was MY 99%ile score that was displayed.  Please know that my first grade class was 26 kids each, doing mornings half the year and afternoons the other half.  Thus it meant 2nd grade was 26x2 = 52 kids in the class.  God bless those nuns!  We somehow survived, making First Communion in the Spring with very few dropouts.  My father got engaged and remarried the summer of July 1962.  The nuns dropped their big black habits the summer of ‘64. 

My sister and I went across the street everyday for lunch with Gramma & Grandpa.  One indelible day - a Friday, November 23,1963 was an ‘art’ day for my class, so a ‘touch’ more relaxed, when the principal interrupted class and told S.M. Immaculeen (but not us yet) that JFK had been shot.  A few minutes later an overhead announcement for the whole school declared that JFK was killed and school was soon to be dismissed. It was a very strange time for the country, with a lot of controversy (as would happen today), but we eagerly watched TV as the events of the funeral and burial unfolded.  We eventually returned to school, and carried on until our 8th grade graduation (with about half choosing to go to Holy Family High School (the one on St. Lawrences’ corner, the other part going to public school or Bishop Stang H.S.).  

High school ensued with my class size about 78-80, with the freshman homerooms located on the 3rd (top) floor of the grade school.  We were in great shape!! We all had to take Latin (rather tedious but survivable).  I ‘blossomed’ in high school, getting involved in many school clubs - chorus, newspaper, and tennis team.  I generally was elected as a leader of the groups by graduation.  I was accepted to Merrimack College, Andover MA.  I loved Merrimack and by sophomore year elected as a Chemistry major.  However, by graduation, academics had run its course for me ENDING UP RANKWS #1,  and I chose to look for a job in the real world - accepting a job in film manufacturing at Polaroid.  I met my husband, Paul, there too, and we married in 1983.

Fast forward.

Three children arrived in ‘84, ‘86 &’89. Polaroid ended up on shaky financial ’legs’, and began offering ‘golden retirement’ packages. Both of us volunteered. We ended up at home with the 3 kids, and Paul started studying for his license in financial planning and soon took a part-time job working for the IRS in Boston.  We were living in Melrose and we all got up and took Dad to the Orange line train in the morning, and picked him up each evening. Life was good.

One particular afternoon, in Spring 1991, Dad called and said he felt sick (from his meat & cheese sub) & was taking a taxi home.  He arrived (making me pay!) and walked into the kitchen to wash out his mouth, then spoke with a slur saying he wanted to lay down.  We had a couch that pulled out to a mattress, which he gladly crashed onto and fell asleep.  He slept all night, awakening with the same/worse slur so I called 911. Once in the hospital, it was determined Paul had had a stroke- a particular type of stroke called a vertebral stroke.  Only about 20% of all strokes are vertebral - vs. carotid the majority.  He started at the local suburban hospital, but soon transferred to Tufts Hospital in Boston, to see a neurologist whose specialty was vertebral strokes.  Named Dr Louis Caplan - renamed by me Dr Stroke for Paul’s memory. Dr Caplan worked fabulously with Paul.

Ultimately, he got sent to rehab in Woburn. The kids and I managed to go over to visit Dad and they had a good time seeing him and playing up & down with his bed.  Finally, he was discharged from rehab and found his way back home - where he immediately reclaimed his authority over the laundry (thank god!) and life returned more or less to a new normal.

Around Labor Day weekend, Hurricane Bob was predicted for our area. I went out with the kids to do the usual storm-prep shopping - bank, food, gas, candles, batteries. On my outing, I noticed that it was more difficult than usual to park the car. I mentioned this to Paul when I got home.  We all went to bed and the Hurricane arrived during the night. We woke up to no electricity and no heat, but I felt particularly disoriented: I had double vision.

I ended up seeing my PCP,  who admitted me to the hospital immediately, referring me to a neurologist.  He prescribed an MRI (which in 1991, did not exist at local hospitals - the closest one was in Lechmere) I went the next day, and it took most of the day to run the test and have it read.  Finally, I got the films and report dropped on my lap as I lay on the gurney.  As is my wont, I chose to read the report, skipping to the conclusion: evidence of a demyelinating condition, likely MS.  I feigned surprise when the neurologist told me. He recommended I get a second opinion. 

I ended up seeing David M. Dawson at BWH.  He had a deep radio voice and concurred I had MS.  My double vision resolved after a few weeks. With time, Dr. Dawson and I struck up a good relationship.  I saw him every 6 months until he retired in 2007, and he continued to be impressed by the lack of change in my signs/symptoms over time. After five years, he started to say that he thought I might have a case of “benign MS”. He told me he could call it this if I made it to 2001–10 years after my diagnosis–without new symptoms or changes on my MRI.  2001 came and went without a relapse. 

Then in 2004, I developed trigeminal neuralgia (TN), a jaw pain I wouldn’t wish on my worst enemy.  Fortunately, I was lucky enough to respond well to the drug Tegretol.  Over time, though, my TN worsened in frequency and duration.   When I started seeing a new neurologist, Dr. Chitnis, I mentioned the topic of benign MS, she immediately guffawed at the whole idea.   And sure enough, after 10+ years of relative MS peace & quiet, the next ten years were a lot different. 

My first request to Dr Chitnis was to see a brain surgeon at MGH to deal with my TN.  He was well known to do a microvascular reconstruction, meaning isolate the trigeminal nerve, SEPARATE THE TRIGEMINAL from neighboring ‘interference’ and proceed.  I had the surgery in spring 2008.  The TN pain returned.  The surgeon suggested doing a rhizotomy, which would ‘kill’ that branch which worked for a while, but again, the pain ultimately returned.  I was close to having another pain shot, when I mentioned doing this to my chiropractor, who poo-pooed all of it.  He happens to be a board certified upper cervical chiropractor.  He adjusted my neck on a Friday and recommended I check in on Monday.  My TN pain reduced in intensity and frequency throughout the weekend.  I came back in on Monday, he adjusted me again and MY TN PAIN STOPPED.  Since then, I check in with my UCC chiro, to check that I am maintaining my cervical ‘straightness’ and my TN pain remains in control. This was in 2011.  I weaned off all the Tegretol I had been taking.  Life was good. The memory of that  brutal pain began fading. 

I was used to it, but my trigeminal pain was generally ignored by my husband as was any/all MS symptoms, as any empathy he had was destroyed with his stroke.   This included the children/anyone beside himself.  It was taken as s,o.p. In the household by most of the kids, they likely were unaware that things would be/could be different (they were  6.5, 4.5, 18 mos. at the time of Paul’s stroke).

Eventually, the children all grew up and went away to college/other choices until it was just Maggie & Paul as empty nesters.  Paul was approaching his 80th birthday in 2019, feeling his age for the first time.   It took me a lot of time and lunches with his sister & brother-in-law to brighten his outlook.  But he kept returning to the inevitable futility of life, believing that he had reached the end of his assigned time on this earth.  All his children had grown and were following successful careers.  One by one, I contacted the kids and each came to visit Dad individually. He straightforwardly explained to them that he was expecting to die in the relatively near future. He said his goodbyes and told them to take good care of Mom.

He was one tough stubborn IRISH s.o.b. with whom you could not intercede in any way to change his mind.  Each of the girls cooked Dad his favorite things to eat. - bacon at the top of the list…. Within a month he dropped one pill at a time, with varied success.   One morning in April, 2020, the 9th to be exact, he woke up, went to the bathroom, fell down and died. If 2020 rings a bell, yes it was the start of the pandemic.  March 17 give or take. Paul was not allowed a wake or funeral, just a burial with a max of 10 people who drove in separate vehicles. We had 8, and ordered separate meals for each of us.  But given my husband's personality - he would have said  ‘just dig a hole and throw me

in’.  Which we did. 

After Paul died, I was interested in a handicapped apartment building in Dorchester, and already had my name on the list.  I got in by June, and planned to put my house on the market.  I moved June 15th and settled in.  It was all I needed, and was easily manageable. 

However, I soon had to admit that my walking was getting worse. I got a cane, then a 4 footed cane, then a collapsible walker. Several evenings, I fell, either getting something from the frig, or what not, and called 911. In addition, my urinary retention was failing, ultimately resulting in my wearing 24 hour coverage (ie., diapers).  In 2014, my neurologist changed my MS designation from RRMS to SPMS.  My children were increasingly concerned with my failing abilities and proposed that I have a 12 hour nursing aide.  This was set up.  I had 2 aides during the week, which was working out well.  I began using a manual wheelchair while out of the house.  Inside, I was using a walker. My neurologist then recommended I consider applying to The Boston Home.  This application was approved, and I moved in November 2023. 

After moving in, it became immediately obvious to me that indeed this disease is multiple - affecting each of us with different losses -be it their arms- one or both, legs one or both, speech, sight, any combination of those systems mentioned.  It reminded me of the back and forth I’d have with my 1st neurologist who impishly reminded me that this disease was truly multiple.

By Lauren Kaufmann

Photo by Marcelo Leal

To explain my time leading up to my mother's death is to vomit my stomach, my lungs, my liver, my intestines, my heart, out of my mouth onto the floor in front of me. It is to rip open my wrists and let you watch the blood spurt out like a hose with a cut in it. Because grief is really that visceral. Grief sits in your stomach, pressing on your ribcage from the inside, rolls around the back of your throat, swims around in the tiny space under your tongue.

I do not know how to tell this story to you poetically or elegantly, because this visual is neither of those things. A lot of times when people talk about death they use flowery language to soften the blow of the scene. But how can I soften the image of watching the woman who birthed you dry heave into an emesis bag because there has not been anything in her stomach for two weeks? Her body that produced me and my siblings can barely even produce saliva. There was not even spit left of her at this point in time, I cannot put that pleasantly.

Especially because I was under the impression she was supposed to get better. My father, due to no fault of his own, was not giving me the full picture of her illness. Even when she got sepsis he expected her to recover relatively soon. When I got home and saw her body, I realized the extent to which he was in denial.

Her yellow, jaundiced, skin hung on her bones. Let me be clear in saying that- it was hanging off of her skeleton. Her face looked like it was made of an olive toned chiffon fabric draped over her cheek bones and brow. Her veins visibly crawled under her skin, holding blood in but only barely. Her hairline had crept back, even though she wasn’t on the kind of chemo that makes you lose your hair.

I knew that her body had already surrendered. She couldn’t walk, she couldn’t adjust her body on the couch or eventually the hospice house’s bed. The time she spent there was time  waiting for the cancer to take control of what it had been chipping away at for months now. It was time spent in death’s waiting room, patiently, eagerly, peacefully. Her body was hardly hers to move anymore, there was little to hold on to. She would miss us, of course, but she said she would still take care of us in Heaven. I believed her in that moment, and I believe she makes good on that word daily.

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About the Author

Lauren Kaufmann is a graduating fourth year at Northeastern University, where she has studied psychology and criminal justice.

By Skyler Cohen

Photo courtesy of Skyler Cohen

12/18/2024

Ambolangoda, Sri Lanka

A 10-year-old rushes into the Emergency Transport Unit (ETU), hunched over, with sweat running down his face, and blood spurting from the back of his head. His face is etched in uncertainty—his eyes glossy from his pain but eyebrows drawn up, most likely wondering what the doctors are going to do to help him. His parents flank him—his mother mirroring his expression of terror, his father pressing a shirt to the wound, trying to slow the bleeding.

There are four beds in the ETU, all currently filled up with patients, but one of the nurses helps a middle-aged man onto a wheelchair so that the kid can take the sheetless bed. The child climbs onto the bed and props his upper body up using his forearms so that the doctor in charge can examine the wound.

It was a dog attack, the dad said. A street dog apparently sprawled and bit the back of the kid’s skull, taking a chunk off leaving a deep wound and bite marks. Large lengths of skin are torn from the back of the kid’s scalp to the point where the layer beneath it, the periosteum, is starting to show.

One of the nurses carefully peels away the father’s blood-soaked shirt, replacing it with a thick gauze pad. As soon as the pad touches the wound, the child writhes and lets out a piercing shriek from the pain of the pad touching his raw skin. The mother, noticing this distress, rubs her hands against the child’s arm and tries to console him, but his mind is flooded with so much pain and torment it must have muffled what his mother was saying to him.

The nurse tries placing the pad again on his head again, but he flinches, twisting away. His father, tense with desperation, raises his voice—an attempt to command and control his son. The boy, shaking, closes his eyes tightly while tensing his whole body, getting ready for the pain of the pad. But this is only the beginning.

The nurses press the gauze just firmly enough to slow the bleeding, giving the doctors a chance to assess the bite marks and plan where to inject the prophylactic rabies vaccine. They huddle briefly, their voices low, while a nurse hands the attending physician a vial of the emergency rabies vaccine. In one swift motion, he draws up the clear liquid.

The child catches sight of the needle in the doctor’s hand, and whatever little composure he had remaining, shatters instantly. Terrified of what is about to come, he quickly flares his arms and legs to try and get off the bed, but one of the nurses is quick to pin down his arms and keeps him in place. The child’s parents then help her by pinning down both of his kicking legs. One of the doctors then helps the nurse and pins down his other arm. The kid’s face was contorted in an expression of raging panic, with tense eyes and a strained neck, trying to purge any part of his body away from the impending pain. He started to yell and regardless of how many people were still holding him down, tried desperately to escape.

The charge doctor started to approach the child, but his head is still moving frantically, all while screeching. He asked one of the other doctors to hold his head in place. Now, 10 arms are holding down the desperate child. The doctor inserts the needle quickly, but the screeching somehow gets even louder and then turns into visceral cries. The doctor takes no time and immediately goes for two other injections surrounding the site of the wound. The boy’s cries collapse into ragged sobs, his vocal cords stretched beyond their limits.

After the injections, one of the available nurses that was not restraining the child, places a clean pad over the bleeding wounds and starts to wrap gauze around the kid’s head. He is still crying, though the sting of the needle has dulled his senses, pushing him into something beyond pain, beyond exhaustion. His tears carve silent trails down his cheeks as the final bandage is secured. The pain from those tears will most likely be etched into his memory for a long time.

At last, the hands release. His mother pulls him into an embrace. His father rubs his back, murmuring words of encouragement. The nightmare, for now, is over. They inhale, together, a breath of relief.

The unfortunate reality is that this type of suffering is commonplace in Base Balapitiya Hospital. Earlier in the day, a woman came in with a dog bite to the foot and also had to receive the rabies prophylactic injections, and later that day, a man came in with a severe abrasion after having been in a tuk-tuk crash.

In this place, suffering is routine, and survival is a matter of endurance.

The boy, still wrapped in his mother’s arms, sniffles, his body shuddering with the aftershocks of fear. His breath hitches in exhausted, uneven gasps. The sharp sting in his head, the deep ache left by the injections—it’s all still there, raw and unfiltered.

For him, for all of the patients, there will be no morphine, no numbing agents, no temporary escape. There are too many patients and too few resources. And so, pain is not something to be managed—it is simply something to be endured.

1/11/2018

Baltimore, Maryland, USA

Salty tears trickle down the 14-year old’s sweaty cheeks to the corner of his mouth as his mother gently wraps her arms around him in the brightly lit emergency room.

It was a spleen laceration from an ice hockey game. The boy lost an edge and collided with a much larger opponent. The opposing player’s knee launched into his abdomen, leaving him with what he described as “gut punches on repeat” and agonizing pain.

The boy’s face strained as his mother supported his left arm in an attempt to get up. He slowly shuffled his way to a wheelchair and was then brought to an examination room.

“You have a severe spleen rupture, leaving you with less than a quarter of its original size,” the doctor said in a dull voice.

“Your recovery will take about nine months. No physical activity during that time. You’ll be moved to the Pediatric Intensive Care Unit where specialist doctors there will take good care of you.”

His recovery is painful and slow. He was forced to use a catheter for several days, to allow him to use the bathroom while limiting any movements that could worsen the injury. Most days during his recovery, he laid motionless in his hospital bed, with the cyclic pit of pain boiling in his abdomen that could only be interrupted from a press of a morphine drip button, bringing his abdomen pain down to a temporary simmer.

***  

For me, pain was not something to be endured, rather just an inconvenience. Pressable. Controllable. Sedated on demand.

Four decades behind is what I felt separated my hospital stay in Baltimore compared to my shadowing experience in Sri Lanka.

At Base Balapitiya Hospital, the pediatric recovery unit had four vital signs monitors for over sixty patients. Children lay in half-rusted, sheetless beds, spaced only feet apart. Mothers sat close by, fanning them in the stifling heat, whispering comforts that had to substitute for any kind of pain relief. There were no TVs, no toys, no morphine buttons. Just time, fatigue, and raw endurance.

I, on the other hand, had my own room, a television, an Xbox, a steady rotation of nurses and specialists. And at my fingertips, a button that softened my suffering before it ever had the chance to fully surface.

Having spent time both as a patient in the healthcare system and working within it, one question keeps resurfacing: Why do some people suffer more than others and for seemingly no reason?

It is an ancient yet elusive question, one where an answer may take many forms.

A Hindu might say it’s the result of past actions and decisions. A Christian or Muslim might see it as part of a divine plan, something beyond human understanding. Karl Marx saw suffering as an inherent part of society, rooted in exploitation and economic inequality. Absurdism, in contrast, argues that suffering is random, without pattern or reason.

The injuries that I have suffered through, along with what I have seen some patients have to go through sometimes forces me to see suffering through the lens of Absurdism. There’s a kind of chaos to it all, a randomness that feels untamable, especially when some people seem to suffer endlessly while others are spared. I can’t make sense of it, and I don’t think I ever fully will, but what I have learned is that I have a choice. I can let the randomness win by default, or I can try and tip the balance through individual action, to not just make living a matter of enduring for others.

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About the Author

Skyler is a fourth-year pre-med student at Northeastern University, studying Behavioral Neuroscience and Writing. He is passionate about using storytelling and creative nonfiction to bring visibility and humanity to global health crises. As a future physician, he hopes to center patient voices in his advocacy, believing that sharing their stories can foster understanding, empathy, and change.

By Anonymous

Photo by Aaron Burden

I used to pray that God would fix me.

Kneeling at the edge of my bed, fingers locked, eyes shut, and I would whisper into the darkness: Please. Take it away. Please make me normal.

I was thirteen when I realized I loved differently than others. It wasn’t dramatic. Just a simple flutter in my chest when a girl laughed too long at my jokes. A warmth in my throat when she touched my arm and didn’t let it go right away. She made me laugh. She made everything feel lighter. And I felt sick about it.

In church, love was painted in soft colors, wrapped up in heterosexual ribbons, and tightly bound by verses about sin. Girls in white dresses. Boys holding the door open. Love was only between a man and a woman. Anything else was a detour to hell. There were no sermons about grace for kids like me. Just long pauses. Disgusted looks. Warnings disguised as silence. If the word “gay” came up at all, it was always with shame or a sentence that started with “love the sinner, hate the sin.”

So I learned to hide.

I became fluent in silence and secrecy. I wore girlhood-like armor. Ribbons, nail polish, fake crushes. I memorized verses the way other kids would memorize song lyrics, hoping that obedience would scrub me clean. Maybe if I recited them enough, they would erase the way I looked at her. If I was good enough, holy enough, I could undo myself and rebuild in a way that was acceptable.

But the prayers never worked. Over time, they stopped sounding like them. They became bargaining chips, then threats, then pleas. At night I would whisper: God, if you really loved me, you wouldn’t have made me like this. You wouldn’t have punished me.

I waited for lightning to strike me down. Or a voice to spew curses at me for ever questioning them. I wanted something undeniable. Something so holy that it would shake the fear out of me and say: You are still mine.

But nothing came. Just the soft hum of my fan. The quiet of the night. The sound of my own breathing that was too loud for the stillness. And the ache of being both too much and not enough for the God I had grown up with.

I kept asking myself questions that I didn’t know how to say aloud.

Why would a God full of love, punish me for experiencing it? Not lust. Not defiance. Not rebellion. Just love. The kind that bloomed gently. The type that made colors seem brighter. That made me want to be softer. Kinder. Better. The kind that made me feel alive. Why would something so tender, so real, so full of love, be the very thing that damns me?

It didn’t make sense. It didn’t feel evil. I didn’t want to choose between heaven and my heart. 

It felt cruel. To grow up with faith as a comfort, as a guiding point, only to realize that the same faith now stood at the gate of heaven with a warning sign, preventing me from entry. I wanted both. I wanted to keep praying before bed and then dream about her in the same breath. I wanted to walk into church without shrinking away. I wanted to believe that holiness and love can coexist. That I didn’t have to cut one out of myself to keep the other. But no one has ever told me that was possible. The message was clear: You can be gay. Or you can be saved. You can’t have both. Pick one.

It felt like God had turned his back on me. Every night I held out my hands, waiting to feel grace, but instead I was met with silence. Silence that felt like rejection. Was he looking the other way when I prayed? When I cried? When I begged for both love and salvation? Was he no longer holding me close? Was I lost in a crowd of sinners he couldn’t save?

There were days when I wondered if I was truly beyond redemption. When I wondered if the silence wasn’t just God turning his back on me, but the world telling me to keep quiet and to stay hidden. Telling me that I wasn’t welcome anymore.

I hated myself. I wondered why I was defective. Why was this little part of me flawed? Why was it so wrong? Why is something as simple as love, something that should make me feel human, twisted into something sinful? It wasn’t just the world around me telling me I was wrong. It was me, too. I internalized the judgment, let it seep into my bones, and take root in my heart. I tried to ignore the way I felt. I tried to hide it. I thought if I prayed hard enough, if I forced myself to be better, to be purer, maybe this thing inside me would go away. But no matter how much I tried to make it disappear, the truth would always rise to the surface. And every time it came back, I hated myself even more.

I despised myself for being this way. For loving in a way that made me feel so distant from everything I had been taught was right. Why did this love, the same love that made my heart race and chest feel full, the very thing that made me feel like I wasn’t good enough to be loved by God? I didn’t want to have to choose between who I was and who God wanted me to be.

But slowly, painfully, I started to question where the hatred came from. And the more I pulled at the thread, the more I realized that it wasn’t God who taught me to hate myself. It was people.

People who mistook control for truth. People who were scared of anything they didn’t understand. People who used religion as a weapon and called it salvation.

They held the Bible like a sword, a tool to tear down. Verses were cherry-picked and sharpened to cut, not to heal. The same book that preached love and grace was turned against me, twisted until it only read judgment. They skipped the parts about compassion. About mercy. About how everyone was made in His image. They leave out the part where Jesus welcomed the outcasts, sat with sinners, and corrupted him into a being who would condemn anyone who was different. It wasn’t God who turned love into sin. It was the people who misused his name. It was the world that was more comfortable with judgment than understanding. A world that, out of everything, chose to hate love. A world that handed me scripture like it was evidence in a trial, proof that I was wrong just for existing. They distorted the message, turning a bond meant to be pure and good into something dirty, something sinful. It was their fear, their misunderstanding of God’s love that shaped my shame.

The day I moved to college was the day I felt free. Not all at once though. Freedom, I’ve learned, is rarely loud. It’s the first inhale that doesn’t come with guilt. The first morning you wake up without feeling you’re already doing something wrong just by existing.

For the first time, I wasn’t under the constant gaze of people who believed my love made me unworthy. No more pretending, no more smiling through Bible study sessions that left me hollow. In this new space, no one knew who I had been forced to be. I wasn’t the girl who sat perfectly still in the front pew. I wasn’t the walking confession booth, waiting to be cleansed. I was just me. The one who no longer shrinks herself to fit into someone else’s idea of holiness. Someone who knows that grace was never meant to come with conditions.

I finally stopped asking for God to fix me because what was there to fix? I endured their hate. Their whispers, their glares, the venom dripping from their voices as they claimed that my heart was a curse. I took it all – the rejection, the cruelty, the lies – because I know, in the deepest corners of my soul, that my love was never the sin. It was the only thing pure in a world determined to destroy it. Maybe I will always be torn between the faith I grew up with and the love that I know is real. But if my love is a sin, call me a sinner. My sin was love. Theirs was hate. We are not the same. And if they cannot see that, perhaps I am not the one who is truly lost.

rooms.

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About the Author

The writer is a senior at Northeastern University, majoring in Cell and Molecular Biology. In their free time, they enjoy cooking, baking, and spending time with their dogs.

By Jane Richards

Photo courtesy of Jane Richards

Sunlight floods the windows in what used to be Pat’s kitchen. One window has a bird feeder attached to it. You can watch them pick at the seeds from the table. Pat liked cardinals, especially in the winter. She loved how the red feathers contrast to white snow.

Pat would sit in her usual spot at the dining room table. I would enter the front door and wave my arms over my head to get her attention. She had been deaf my whole life. We called her Pat because the sharp syllable was easy to detect with muffled hearing. She would then yell, and I mean yell, “Just a minute” while she put her hearing aids on. This minute was important because Pat did not like to be left out of the conversation. She had three fears: third was being excluded, second was being forgotten, and first was dying.

At her dining table, the cups before us were brimming with nostalgia. The recipe was simple: a sprinkle of Cafe mate Original Coffee Creamer, a Pacific Bold Costco K-Cup, and one pale yellow packet of Splenda artificial sweetener. She used to exclaim from her seat while I made our drinks that she wanted, “Coffee so strong it makes you want to slap your grandmother!”. She drank out of paper coffee cups that were easier for her shaking hands to control. The time from which this cup of coffee was made to the time it was emptied, was the best time of my life.

Pat was a wealth of knowledge, humor and hardship. She was a walking western novel and a talking judge’s gavel. Her forty years of sobriety were proof of her resilience. Our conversations at the dining room table about travels, alcoholism, schoolwork, lovers, parents, and children are my most precious memories. Near the end, we had many tear-soaked conversations where she promised me she would never die. Right there, at the dining room table, she held a wet tissue in her shaking hand and swore, “God damn it, I won’t die!” As if she had a choice.

When I picture Pat’s house now, I think of these conversations in that dining room. I focus on the Thanksgivings, birthdays, sleepovers, cups of coffee, puzzles pieces, bowls of raisins and mugs of Campbell’s chicken noodle soup. I can sit easily with the memories of people gathered in the kitchen around platters of grocery store cookies for my grandfather's wake. I don’t mind the image of her fussing as I fed her chicken broth through a straw when her health was declining. However, one memory I seldom revisit is the day I walked in and everything was quiet.

It was seven AM and early August. No one was crying or hysterical or loud. It was unlike my family. My uncle was organizing pill bottles and planning how to dispose of the medical equipment collected over the past three months. My mother was burning sage and praying. My brother was sipping coffee in his work clothes. I felt trapped, like I was paralyzed on the couch.

Pat’s body lay there. Cold. Unmoving. Lifeless. Her eyes were closed and her wrinkled face poised in eternal sleep. Her hands were covered by the bed sheet. I wanted to hold them, but I was afraid. I did not want to feel them stiff and cool. I longed for them to be warm and shaking. I told myself to cry, but my eyes were dry. Paralysis held me still, I could only open and close my mouth like a fish.

How was no one freaking out? The most important woman in the world just died and no one was bothered. I was on the couch next to the loaned hospital bed in her living room. The couches were patterned with dark roses. The cushions were so soft that when Pat and I laid down we would practically sink into the floral cover. After she died, much like the rest of the house, the couch smelt of urine. Pat became incontinent. She could no longer control her dignity. Even in her end-of-life delirium, I knew she would hate that the laundry was not bleached to be rid of the smell. She would have enjoyed being an inconvenience though. I wish that she could have known that all the people in the house were there just to see her.

Urine was not the only smell, there was also smoke. My mother walked about the room wafting sage smoke with a feather “to help guide Pat’s spirit to the afterlife.” Pat had informed me long ago that she did not need anyone telling her about religion, “I went to hell, and I danced with the devil, and I got my own damn self out of there. I didn’t need religion, I needed AA.” I thought about this as I received condolences saying she was going to a better place. Don’t tell her where to go I tried, but the words wouldn’t come.

The living room was darker than it should have been. The blinds were down which felt unnatural in the summertime. If I could stand, I would raise them and let the August sun filter through the thick air of the room, but paralysis held me to my seat in the dark. It really didn’t matter because my vision blurred anyways. I stared straight ahead towards her, but black splotches filled my eyes. The dark room and the momentary blindness were frustrating because I wanted to see her. I wanted to memorize her whole face before they took her away. 

The first time I wanted to memorize her; I was a child. We sat on her back porch and watched the clouds. I tried to mirror the way she sat and the bend of her neck as she looked towards the sky. Pat learned about clouds in the western novels she read. She explained that being able to read even the slightest shift in the atmosphere was important for finding cover before the sky opened. 

She told me stories about the high country often. I was unsure if they were her own experiences or if they were from novels she had read but she told them so colorfully I didn’t really care to learn the origin. She explained the Rocky Mountains and the type of horses you need to traverse them. She talked about long floats in the Colorado river and detailed the sorts of trout you catch when you go fly fishing. She reminisced on campfires and canned beans. When she talked about the mountains, you could see her eyes glaze over like she was in another world, shooting down outlaws and riding with cowboys. Now she really was in another world… or at least not in this world. She was out there somewhere.

In the days before she passed, my mom whispered to her, “It’s okay if you want to leave us, mom. You can go find peace.” I wanted to scream at her. It’s not okay I wanted to say. She can decide when she wants to go. Stop telling her what to do!  

In my first year of college I watched from afar as a friend drove himself into addiction. I told Pat about it over Thanksgiving break. After her sobriety, she became an AA counselor for several years. I explained that I was nervous for my friend, but I didn't know what I could do to help. She took a sip of her coffee and stated plainly, “There’s nothing you can do.” I looked at her blankly, “What?” She laughed a little, “I’m serious. The only time he will get sober, is when he decides he wants to get sober. Nobody else can make that decision for him, he must do it for himself.” I pondered, “Why?” She put her cup down spilling a little from the shakes, “I tried for years to be sober for my husband, for my kids, for revenge on those who said I couldn’t, but it didn’t work. Nothing mattered until I wanted to be clean for myself.” I never forgot this conversation with Pat. What if she wasn’t ready to die? Did she get to make that decision for herself? 

At Pat’s funeral I watched the eulogy from a round folding table with a plastic tablecloth. They played the song “Rhinestone Cowboy” by Glen Campbell. It was a song she used to play in the car when she drove all five of her children on cross-country road trips. The pre-chorus sings, “There’s been a load of compromising, on the road to my horizon, but I’m gonna be where the lights are shinin’ on me.” I laugh now at the idea that all Pat’s compromising ended with me. Did she know through all that suffering, a little girl would be the one to shine the stage light on her? Did she know that a woman so desperate to be alive would never die to me?

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About the Author

Jane is a fourth-year student at Northeastern University majoring in Health Science and pursuing a future in nursing. In her free time, she enjoys reading, writing, traveling, and going to the beach.