Tiron, Marie’s husband shares his perspective.
Lyzz, a 19 year old college student, has struggled with issues of weight, and ultimately with self-love, since childhood. Growing up, she watched her mother struggle with anorexia and endure multiple hospitalizations, feeding tubes, and seemingly endless suffering. She didn’t want to end up this way, and promised herself she would never have an eating disorder. Despite her best intention, she developed Bulimia by the time she was a teenager. With her mother as a role model, she had no idea how to have a healthy relationships with food and her body. She didn’t know how to love herself.
But most of us struggle with issues of weight, even when we have had healthy role models. The pressure to be thin in our culture is enormous, especially for girls. Thin is considered better, and eating disorders are pervasive. According to the National Institutes of Health, about 10 million people in the U.S. have an eating disorder, and 90% of these are women. Approximately 4.5% of all American high school students reported in a recent survey that they’d vomited or used laxatives as a means to lose weight in the past 30 days, and approximately 4% of college-aged females have bulimia. According to the 2007 Youth Risk Behavior Survey, 35% of adolescent girls believed they were overweight, 60% were trying to lose weight. The vast majority of eating disorders go untreated.
The numbers don’t tell the whole story. To truly understand, we have to listen to those who have been directly effected. In Lyzz’s words, “To fully grasp that terror of an eating disorder would take much more than an hour long interview. The struggle for perfection is destructive and unbearable. Not only is this goal an impossible one, but the process is crippling and fatal. An eating disorder needs you to feel imperfect, unworthy, ugly, fat, disgusting, wrong, horrible. It strips you of your health, your self worth, your life, your soul. It blames you for everything that goes wrong and berates you if you can’t fix it. You do not need to fix everything. It is not your fault. You don’t need to be perfect. You just need to be the best you can be and not be afraid of who you are. That is true beauty.”
Story first appeared on WBUR’s CommonHealth blog on February 3, 2011: http://commonhealth.wbur.org/2011/02/eating-disorder-bulimia-takes-over-life
Resources:
To learn more about eating disorders, visit
http://www.mayoclinic.com/health/eating-disorders/DS00294
For support as well as information about treatment options, go to
http://www.nationaleatingdisorders.org/treatment
630-577-1330 is the ANAD Eating Disorder Helpline in the United States that is open Monday-Friday 9:00am-5:00pm and provides information about symptoms and contacts for further support and treatment. The email anadhelp@anad.org is also available for these resources.
http://www.anad.org/eating-disorders-get-help/eating-disorders-helpline-email/
To listen to more stories about personal struggles with eating disorders, visit
http://www.nytimes.com/interactive/2008/10/14/health/healthguide/TE_EATINGDISORDERS_CLIPS.html
http://www.huffingtonpost.com/stephaniepapa/eatingdisorders_b_4265845.html?utm_hp_ref=mental-health
Picture this scene:
It was winter in 2011.
I was 35 years old.
I had two little kids, a girl and a boy. Clare was 4 and Hayes was 1.
My husband Sam was totally engaged in family life, a great husband.
My book publishing job was full time and included frequent travel.
I was trying to take care of the kids, to be a good wife and good friend, to exercise, to eat well, to cook, to read, to stay up to date on current events, to relax, to meditate, to travel, to volunteer at our preschool.
I knew that I could do all I wanted to do and I was happy a lot of the time. But as much as I was happy, I was exhausted and cranky.
I remember saying to Sam that I couldn’t maintain the level of intensity, that my body was breaking.
I was worn out.
On the last Sunday in February, I felt a lump in my right breast. Since Hayes was still nursing, there were lumps and bumps, but this felt different. More solid. I went to my midwife’s office on Monday morning, and the nurse agreed that the lump felt unusual. In fact, the cheerful banter about the kids immediately stopped when she felt the lump. Her face was instantly serious, drained of color. She recommended that I have a biopsy and she scheduled it for Thursday of that week. That was my first mammogram and my last. The experience of the mammogram and biopsy was fine. I was a little scared, a little shaken, a little teary but at that point there was a 50% chance that the lump would be nothing to worry about. Life would go on as usual.
But that of course is not what happened. The results of the biopsy came back on Monday morning. The same nurse who helped during both of my pregnancies and who sent me to the hospital for the test called me that morning. She said that all of the details of the biopsy were not back. The preliminary news: You have breast cancer. It is invasive duct cancer. We can’t tell you more at this point. You have a meeting with a great team of doctors at Mass General next week.
What??
On the one hand, this was shocking news. I have breast cancer? I am 35 years old. I have two babies. I have a full time job. I have plans. How is this happening?
On the other hand, cancer had always been looming on the edges. My mom died of pancreatic cancer when I was 2, my brother was almost 6, and she was 33.
There was a haunting feeling that we were reliving history. The ages were too close, the story too close. I knew what Sam and my kids could lose. The pain is real and forever.
[I want to pause here for a second. I have a hard time untangling my cancer story from my life story. My mom’s death is certainly part of my cancer story, but it is important to note that it is really the central theme of my life story. Her death changed everything—from where I grew up to how I grew up to the person I married and to how I mother. My cancer story exists within her cancer story.].
In the days after the diagnosis, I was in organizational mode. I spent a lot of time organizing my office, calling family and friends, grasping for control.
At our first medical appointment, we talked about my cancer—about the stage, the grade, and the plan. Sam and I left with a clear idea of how MGH would treat my cancer. I would have a lumpectomy, followed by chemo, and maybe by radiation. We had a team in place. We felt in good hands.
At the recommendation of the doctors, I decided on genetic testing for a breast cancer gene mutation. It was notable that my mom had cancer in her early 30s as well, even though it was a different cancer, one that I always thought was not inherited. What I didn’t know before my diagnosis is that pancreatic cancer has a dotted line to the BRCA mutations.
A few weeks later, on a really crisp and bright morning, our little house was buzzing. I was getting ready for work, the nanny had just arrived, my husband was using the vacuum in the kitchen, Hayes was crying, Clare was saying “Mom. Mom. Mom. Mom. Mom.” The phone rang. It was my surgeon. The rest of the world fell back, sound faded, as I heard her words: You’re BRCA1 positive. This changes the course of treatment. We recommend a double mastectomy, followed by chemo and radiation. For whatever reason, I immediately agreed to this path. I was not reluctant to have the surgery, even though I nursed my babies for a long time and was still nursing Hayes. I was attached to my breasts, but I knew they had to go. I wanted every single breast cell to be history. The mastectomy would be followed by breast reconstruction and an oophorectomy because of an increased risk of ovarian cancer. At that point, I didn’t understand the long-term consequences of taking out my ovaries, removing my breasts, but even if I had, I would have moved forward with this plan. I wanted to do everything possible.
Waiting for the surgery was hard. The mind plays tricks: I knew that I could feel the tumor growing. I could feel it move to my lymph nodes.
The surgery was on March 31. I don’t remember arriving at the hospital, meeting with the doctors, going under—really any of it. I do remember my parents at the hospital. I remember being incredibly out of it. I remember a friend visiting, though only vaguely.
Day by day, I felt better.
At the end of April, I was accepted into a clinical trial which required a full body scan in preparation. Though my oncologist was confident that the cancer had not spread, I was happy to have the scan for peace of mind. A baseline. I went to MGH West for the day with my oldest and best friend Rosie. I drank the awful drink, we laughed, goofed around, and headed home. I was not nervous at all.
We had been home for about an hour when the phone rang. It was my doctor. Something in the liver looked suspicious and a biopsy was scheduled for the next morning.
The biopsy was the worst experience of my life. The giddiness of the day before was gone. I was terrified. My husband took me to the appointment in the bowels of MGH-no windows, no private room. Curtains only. The anesthesia did not totally knock me out because the doctors needed me to respond to cues. The suspicious spot was behind my ribs so the needle went between two ribs.
The medicine made me sick. I vomited so much that blood vessels were popped on my face. I couldn’t speak. Finally, around 8:00 my husband wheeled me out and we were home soon after. My daughter ran up to me—I remember in pink tulle—but I couldn’t speak and I was too weak to even hug her. I slowly carried myself upstairs and into bed.
This was a very physical experience. I felt so annihilated by the experience that I didn’t have the energy to worry about the biopsy results.
The results were fine. The cancer hadn’t moved. The suspicious spot was a lesion that has now been monitored for five years and hasn’t changed. We stayed on course. Chemo started in early May.
I got through chemo. I very rarely felt nauseated like I thought I would. What I did feel was totally crazy. I was wired and not thinking straight. I was wide awake but totally out of it. I felt out of my mind.
Surprisingly, over time, I began to feel healthy and confident with my cancer look. I loved the shape of my bald head and the colorful scarves. I felt beautiful, but not always. During a visit by my incredible sister-in-law Mary Lou, I happened to catch a glimpse of my naked body in a mirror. I was thin. I was bald. My breasts were gone, with only the shape of my expanders and stiches where my nipples used to be. My chest had been dug out up to my collar bones, so the upper chest was concave. The scar from Hayes’ delivery a year earlier was still red. It was shocking. The hug that she gave me in that moment literally held me up. Without her I would have collapsed in despair. She supported me and the moment passed.
Our family was in survival mode. During the treatment, my dad assured me that my story would be different than my mom’s story, that the times had changed, that my cancer was not her cancer, and that my ending would be a happy one. But the chance that I would leave these kids was too real.
The kids were little so cancer was not tangible to them in the way it would be to older kids, but it was hard on them. Our routine was destroyed. Clare turned 5 that May. Clare is amazing, full of life and vigor. She fights for what she wants—and at age 5, she wanted attention, sweets, and TV. People were coming and going. Everyone had different tactics for disciplining her. And different tactics for spoiling her. Presents, ice cream, pedicures. It was so confusing for her.
Hayes was a baby. After the surgery, I couldn’t lift him out of his crib. I couldn’t hold him. I stopped nursing him. I felt as if I was abandoning him. In August, after my chemo had ended and I was feeling better, I was on a walk with Hayes and Sam. Hayes wouldn’t come to me, and Sam said, accurately, “He doesn’t trust you anymore.” My heart was broken.
But then, moment by moment and day by day, we rebuilt our bonds.
During my cancer treatment, many people suggested that I go back to work for at least a year and a half, to find normalcy again. This was great advice, helping me to put other things besides cancer on center stage. But in June 2015, about four years after the diagnosis, I packed up my desk and headed home. I really wanted to be with my kids, to raise them, to mother. I felt that I was missing too much. We’ve spent the last year living normal lives—doing homework and extracurriculars, lounging, traveling, bickering, cooking, exercising. It has been a great year, filled with bumpy life.
My health has been good, and my trips to the cancer center have slowed down. Cancer still has my attention (when I had a stomach bug recently I asked my husband if he thought it could be metastasized cancer—he didn’t), but it is not the focal point. It is part of my story, not my entire story. It is my story, not my mom’s story. And I am thankful for this.
On September 28th, as part of HUBWEEK 2016, Health Story Collaborative hosted one of our Healing Story Sessions at the Paul S. Russell, MD, Museum of Medical History and Innovation. Healing Story Sessions are live storytelling events founded on the belief that story sharing is healing. In preparation for these sessions, we work closely with participants to construct their stories of illness and healing and to become comfortable sharing their stories in spoken word in front of an audience. Typically, story sharers invite a group of community members to witness their stories in a safe and supportive environment. On September 28, in a departure from our norm, we opened the event to the public.
We had three courageous story sharers. In the coming weeks, we will feature the written stories and the accompanying videos from the live event. We encourage you to read and watch.
As our first feature, we bring you Michele Foley. Michele is living with Stage 4 Melanoma. Her story is brave and beautiful. For the event, she shared the stage with her son, Andy, currently a second year Harvard Medical School student. Stay tuned for his story next week.
Good Mornin’ Glory
By Michele Foley
Andrew reminds me of a story I often forget. It is a story of becoming stronger, forgiving myself, laughing at myself, connecting with others. He reminds me -with his questions and focused listening -how sacred it is to share in someone’s story. I thank him for his sublime attention to my medical experience over these years. His willingness to be so involved inspires action within me, and action from others. He wraps his positive energy around me—and he might not know till now, how he has held me together and kept me walking forward.
2010 At crossroads in my life. Our answer to the empty nest? My husband and I take flight ourselves- new college jobs in the Southern Allegheny Mountains of rural Pennsylvania. Initially empty nest for me is filled with a sense of loss for what I called home: 28 years of memories with our three sons, close friends, a high school teaching routine. Change evokes a gut-wrenching ache. Where is everyone I have been centered on for the last twenty-nine years? I am off-balance. Why is my reaction to withdraw and isolate myself? Why cling to the familiar, and long for what has been? “Give yourself time,” my sister reminds me. Time to listen, pay attention, so I start to open my eyes to my new world. I drive back and forth every day, up and down the Cresson Summit, 2,430 feet above sea level. I notice massive cloud formations, September blue skies, sunsets, stars, and moonlight with magnificence like never before. College chapel bells bless each hour, adding sounds familiar from my neighborhood as a child that bring comfort. Let this new adventure be an example of what I want to tell others: get up, get out and walk boldly into your life. “Shine on,” those chapel bells sing. And so we do. Poet Nina Bogan’s lines capture my feeling then:
When I walked up the road, the string sack
Heavy on my arms, I thought
That my legs could carry me anywhere,
Into any country, any life…
One year later I am rambling back on the train from NYC to the college, to my new home. Sent to the big city to attend the JED Foundation Gala, I finish with my five hours of fun and fancy. I return to work in the train’s quiet car. Answering a call from the surgeon’s office, I step out between shifting train cars, struggling to keep my balance, and lean on the aluminum wall to take notes. I cannot hear the medical assistant’s voice and ask her to repeat and spell the results. I copy her exact words on a remnant scrap and keep it in my hand, returning to my seat. I struggle to keep my inner balance. This can’t be good. Exceedingly rare neoplastic cells positive for Melanin A, HMB-45, S-100 features consistent with metastatic deposit. Malignant metastasized melanoma. No. Not this, not now. I am just into my new life. If I don't say it aloud, look at the words scribbled on the paper, I might not have it. I will deal with this myself. Alone. No one else needs to get upset or derail their lives. Not so much sorry for myself, I feel sorry that I must begin to tell family about this. Once I disclose the diagnosis, I will have no control over others’ reactions. I don’t want to be the reason my husband is upset, my sons are sad.
I return the next day to have sutures removed. Maybe there is a mistake in the lab report. Staff stare at me as if I am dead. Even the surgeon gives me a hug, “god blesses” me, hopes I have my “things in order.” I can't leave fast enough. I bolt to my car, roll down the windows in the sweltering Ford, sit quietly, and notice bells dreadfully tolling the noon hour from the nearby rundown cathedral. “For whom the bells tolls, it tolls for thee.” Doomed, done, those bells keep telling me.
Surgery tolls. Driving to the hospital, I command my husband a la ultimatum. “If they can remove the cancer completely, but need to take my leg--fine. If they go in, the cancer is everywhere, lymph nodes and all, keep the leg intact and let it be.” Not long ago I felt “my legs could carry me anywhere.” Foolish to think I am in command. Come, Holy Spirit, fire me up. Keep me warm as I shiver pre-op. I ask for boldness of heart, I ask for patience with the unfolding of life, I ask for joy. Come what may. Good thing I memorized it. Pre-op needles in, monitors beeping, it all signals solemnity.
Post op results – Tumor exceedingly rare. We have never seen this (tumor type) before. So I am “one in a million?” Ah, it makes my stomach ache. Can’t this be ordinary? Please no, not exceedingly rare.I like to think I am one in a million but not like this!
My bubbly Brazilian surgeon exudes optimism and hope. I try to share his outlook. It lasts three days. Floodgates open when, with water from the shower, I make my first attempt at loosening the bandage. There it is, a twelve-inch gash spanning my left outer thigh. Raw, jagged, unfamiliar- I begin to sob. My life-long optimism betrayed by this. It felt like I was being mocked--ha-- “my legs could carry me anywhere.” I was going nowhere. I was heading straight to the Interferon lab.
“Give yourself time to heal,” my son Matt coaches. The scar healed; I started to fall apart, needing constant reassurance that all of the cancer was removed, margins clear and everything under control. Guaranteed, right?
Patient patient I am not; setting new goals helps. I will walk again without a hitch. I will wear long pants forevermore. I will never go to the beach again, only to be mocked by the sun. I, I, I, now seems silly. Pace myself? Who am I kidding? My body will let me know. Let go. No control. Let it, allow it, flow with it. Practice it. Make it my practice. Learn again. Again and again. Work to get my balance back. Identify what gives me strength, go after it. Slow and steady. “Take your time,” my husband reminds me. This is not a race.
2011. 2012. 2013. 2014. 2015 No evidence of metabolically active recurrent or metastatic disease. With each checkup I move a little closer to lightness of being. The remarkable feeling of seeing reports that deem organs “unremarkable” brings a smile. My ordinary life swings back with tutoring, teaching, editing. I act as if the summer of surgeries is a distant past. Deep within though there’s the tolling. I am aware of time ticking both in my head and heart. It counts the time I may have with my people; it counts the time until the next scan. I try to remind myself: Be open. Be alive. Pick up what is right there in front of you--this gift!
2015 Routine PET scan reveals spot on left lower lung. I feel that shot to the gut again. Unfortunately default mode kicks in. I go to clinic appointments alone. I go to biopsy alone. My heart pounds. My head throbs. Tears well up but not out. Metastatic melanoma Stage IV. Medical plan RadVac. It is on the move, in my bloodstream, everywhere. I go to radiation appointments alone. My arms hurt. This is too much for me to carry. Our son Matt is getting married to Katie in a few weeks. Wedding bells should be ringing, not the tick tock, chime, timer, bells tolling that my time is up. Off-balance. I steel myself. I will carry this latest news myself.
When will I learn?
I tell my people. It is happening to all of us, our son, Andrew reminds me. We will walk this next part together.
After two weeks of radiation and one Pembrolizumab treatment, wedding bells chime! Our son Tommy, reminds me to feel all the love that fills, overflows in our home. I stand off to the side looking at our yard filled with a circle of love-all of us enjoying a summer eve together. I listen: belly laughing and belching; crickets’ song and sounds of kids. Listen hard. What a fool I’d be to isolate myself from all of this wonder-filled-ness. Balanced and buoyed. I gather strength, more than I ever knew from those who love me. It is the ordinary time we spend that is the best: taking a walk, prepping a meal, pulling weeds in the yard, collecting sweetie tomatoes, icing up a glass of cold water and surprising the other with it. Such comfort in the beautiful ordinary day.
“What’s good?” my son asks, just to remind me.
Along the way, it has been a challenge to find the energy to always begin again: new treatment, new clinics, new procedures, new side effects, new allergies, new story –that is the norm. Gather again and again the beginner’s mind. Inner balance is what I am spending time on, and implementing a plan to keep strong. I begrudgingly take time to attend to symptoms of the pembrolizumab treatment. My sister chimes in, “Be as good to yourself as you are to me, to others.” Only after that can I spin into the ordinary day: tutoring, editing, walking, practicing yoga, humming, being grateful. I am the luckiest person on the planet.
I have imposed only three goals this time around. One, I limit my thought/conversation about the melanoma on an ordinary day to max ten minutes. This includes internet research, telephone conversation, complaining to family. The timer is set and when it chimes--DONE. Two, taper back on daily work--some tutoring, editing continues. Three, tend to the wellness to keep balanced. I admit all that attention makes me weary. No shortcuts. Fresh fruit and veggies, green tea, yogurt, kefir, beans, broth; then start over again shopping and preparing. A cup of tea, a homemade blueberry muffin, good company: today’s recipe for feeling fully alive.
There are a few aspects that I am working on these days.
*What does life as “normal” after cancer look like? Loved ones just want to see the old “me” back as a sign that all is well. Gone, she has moved on
* In my quest to pay more attention to detail, I try to work and stay ahead of whatever symptom is presenting, no matter how small. This self-compassion and self-coaching has been helpful in keeping my brain focused on a plan to affect a better outcome.
* I have pledged full disclosure always to family (in so doing I model what I hope will be same for us all).
* I am terrible about asking for something for myself, so that is my subset of full disclosure. Not edit, sugar coat, back pedal, apologize, or cry. Name it; claim it and move through it. This is applicable from extremes: craving butter almond ice cream to refusing to go to the next scheduled treatment.
2016 Currently, I am on hold after 8 Pembrolizumab infusion treatments. Last scans just in August were straightforward. No new evidence of metastatic disease in the chest, lower left lobe. Nodular component near the medial margin measures 0.9cm and is unchanged since 5/16/2016. There are no new pulmonary nodules. Like Poetry.Details regarding this type of melanoma say it is least receptive to targeted drug therapy. Darn again, that one in a million! The plan is to monitor and report symptoms to clinic every three weeks. No travel. Follow up PET scan. It feels good putting a bit of distance between clinic visits now. So I approach this interim as time to get my second wind. I want to be present to the here (and hear) and now, taking it all in—saturating my sense as I pause often during an ordinary day. I continue to pray to have the guts to be able to “carry” whatever comes next. Not really sure if that points to me or to those I love. No matter. Lately a sense of great freedom is emerging - having faced a bit of darkness. How to get back a bit of the “my legs can carry me anywhere?” Get up, get out and walk boldly into your life. Begin to hit the tennis ball, plant basil, bake Irish soda bread, dab on lavender, walk two-a-days, occasionally buy a good cup o’coffee.
In a monumental turnabout, I have moved from “I have to take care of everyone” to “Good morning glory. Let me gather my strength and be of help today.” I am humming along with guarded optimism, knowing the limits to that I can control. So I have retired from some of my favorite avocations: running my brother’s life, offering childrearing advice, meddling as the smother-in-law, badgering students about Thirsty Thursday when a paper is due Friday, forwarding TED talks to 30 on my contacts list, arguing with my hubby.
Postscript
As the Joan Didion quote says, “We tell ourselves stories in order to live.” The story I tell myself is to get up, get out, and walk boldly into life. Over and over again I realize how lucky I am. Andrew shared with us a quote during his first week at Harvard Medical School: “ Life is short and we have never enough time for gladdening the hearts of those who are travelling the journey with us. Oh be swift to love, make haste to be kind”. This is my avocation now.
This narrative unearthed so much that was unspoken, tucked away, intentionally forgotten. Wrestling with, loving, crying, remembering, speaking, listening, forgetting, and forgiving—all messy indeed. It has been cathartic and calls me to be courageous. As the psalm says, for what has been, thanks. For what is to come, yes.
When A Mother Decides To Stop Cancer Treatment And Face Death
By Dr. Annie Brewster and Leah Meyer
More than a decade ago, Colleen Lum was diagnosed with Stage 3 ovarian cancer. Her children, Kyle and Kiara, were 11 and 8 years old at the time.
A few months ago, after battling the disease for 13 years, Lum, who lives with her husband and family in Hopedale, Massachusetts, decided to end treatment. Today, at age 56, her health has further declined, according to her daughter. Lum is no longer eating or drinking much. And she's very, very tired.
Through it all, though, she's been clear-eyed about her illness.
"We’ve always been straightforward and honest," Lum said during an extensive interview in June. The kids "get the facts and the truth and it’s not 'Mommy has a tummy ache.' No, 'Mommy has cancer.' "
Lum added: “I was a good parent before cancer, but cancer made me a better parent, because you don’t have time to postpone.”
Listen to Lum and her daughter Kiara share their stories here:
Ovarian cancer is an insidious disease, often asymptomatic until it is quite advanced, resulting in five-year survival rates of under 50 percent. Lum has beaten the odds and navigated an onslaught of difficult decisions with resilience and a keen sense of her priorities.
"You can talk about sex and drugs and alcohol with your kids because you don’t have time to postpone those conversations," Lum said. "Nobody’s guaranteed tomorrow. And cancer makes that very relevant. When you can sit and talk to your children about your death, everything else becomes easy."
Four years ago, Lum refused to participate in a clinical trial that would have required her to spend several months away from home and apart from her kids. When her physician implored her to enter the trial, saying it was his job to keep her alive, she replied, “Well, it’s my job to be a mother.”
Lum knows that she won’t be around to see her 21-year-old daughter graduate from college — and it's the thought of missing those major life events that saddens her most. "It’s not the dying that upsets me," she said. "It’s the milestones in your children’s lives you’re gonna miss. Seeing them walk down the aisle or seeing them have babies."
Still, she's happy and proud she got to be a mother for so long. "My miracle isn’t that I walk out of here and I get cured. My miracle is that I got 13 years of a Stage 3C diagnosis and I watched an 8-year old and an 11-year old turn into a 21-year-old and a 24-year-old. The biggest thing here is perspective."
After years of intrusive treatment, harsh side effects and approximately 160 rounds of chemotherapy, Lum knew in April that it was time to stop. Her body had had enough. To those who insist she must keep fighting, she said: “So many people want to jump back into denial and pretend … that this isn’t happening. If you’re coming along for the ride, you’re getting in my boat, and my boat is reality.”
Now, with death approaching, Lum is grateful to know that not much has been left unsaid. And she spends time envisioning her death:
I hope I die with grace and dignity, which I probably will, and a few swear words. It’s one thing I’ve got as cancer’s gone on — I’ve maintained my filthy little mouth and my few favorite swear words. I wanna have the best quality of life for whatever days we have, and then it’s like, I don’t know what this whole dying stuff is gonna involve. I hope it’s not painful, I hope it’s peaceful. I hope I can die at home. But I don’t know what it looks like. If I got to call the shots, I’d get to hang around in bed and talk to the very last frickin’ minute. And kinda joke and go, 'Hey, it’s time to go.' And I say goodbye, and I’d walk out peacefully. But as with cancer and most things, I don’t know how much of a choice I get in that.
Lum wants to go out on her terms. “No ventilators or feeding tubes in this body,” she said. While she accepts that she may not be able to control many things that happen at this point, she wants to control the things she can, and she has spelled it out clearly for her family.
For instance: If she is in a coma, she says it's OK to send her to the hospital or hospice. She has chosen a casket, and wants it to be open. She's lined up a caterer for the reception.
In our society we are notoriously bad at talking about death. It wasn’t until this year that Medicare finally began reimbursing for end-of-life conversations between patient and doctor.
In one of the countless conversations Lum has had over the years, she imagines death as a continuation of life, but different: "What if [it's] nothing but two little hills, and there’s a bridge? And you’re just leaving one world to go to another … and it’s really something very simple?”
Dr. Annie Brewster, a Boston internist and founder of the Health Story Collaborative, is a regular contributor to CommonHealth. Leah Meyer is an intern with Health Story Collaborative and a student at Yale College.
Originally published on WBUR CommonHealth Blog on August 5th, 2016.
Resource:
Megan, a 23-year-old New Jersey native currently residing in California and pursuing a master’s degree in global public health, arrived at Monte Nido Vista on June 5, 2014. This interview took place in June 2015 during the week of her one-year anniversary.
Once consumed with restriction and compulsive over-exercising, Megan admits that currently she struggles with orthorexia, a condition where one obsesses about eating “healthy” foods. But she has moved past her former life of dissatisfaction with herself, by stepping out of life and into treatment, where she did major self-assessment. She found her “Soul Self” – also referred to as “Healthy Self” at Monte Nido.
Megan speaks about the imperative of connecting with people, especially those who are in recovery or have recovered. She reflects on the impact both her eating disorder and her recovery have had on her family. And finally, she shares the tools, motivations, and goals that help her stick with recovery.
Liz was diagnosed with Ovarian Cancer in 2011, just a few short months after her mother was diagnosed with the same disease. As an oncology social worker herself, she had a lot of experience with cancer, as a health care provider. Then, suddenly, she found herself in the uncomfortable role of "patient" and was forced to re-evaluate much of what she thought she knew. Liz shares her story with insight, humor and honesty. Here, you can watch excerpts from her June 2014 Healing Story Session.
Last week, I interviewed Sarah Baker, a Cambridge based writer, mother and independent radio producer, about her recent article, “Unraveling My Childhood Asthma: Did motherhood Cure it?”, published on WBUR’s Commonhealth Blog on May 9, 2014. I was drawn to this article because it so beautifully portrays the complex process of integrating illness and loss into one’s life, and how writing can be a part of this.
As Sarah puts it, writing this piece was like bringing her interior world and her exterior world together in public, perhaps for the first time, and this was a powerful experience.
Read Sarah’s piece, and listen to the audio recording of the interview. Sarah is eloquent, honest and brave. She has lessons to teach all of us.
Stay tuned for her memoir!
Listen to audio here:
Photo credit: Susan Lapides
Transcript of Dr. Annie Brewster's interview with Sarah Baker:
Dr. Annie Brewster: So I'm here today with Sarah Baker, freelance writer, mother and a independent radio producer. I wanted to talk with her about an article that she recently wrote called "Unraveling My Childhood Asthma: Did Motherhood Cure it?" which was published on WBUR's Commonhealth Blog on May 9th. I love this article and I think it really is right along the lines of what Health Story Collaborative is about; trying to harness the healing power of stories, so I wanted to talk to you about the process of writing it and what came out of it. I guess as a first question, I was really struck in reading it by all the different roles that asthma played in your life. It set you apart, it called attention to you in life when you might not have otherwise gotten attention, it brought out "sassy pants" which I loved and it was also a constant in your life in the midst of what was otherwise chaotic. So it served many roles, both positive and negative, it seems. I'm wondering if you can speak to that and the different roles that it played in your life.
Sarah Baker: I agree with everything you just said. I was a kid who went through a lot of trauma early and my body responded in a way that maybe my brain didn't know how to. I couldn't breathe. I think my asthma was a reaction to the stress. My mother had died, we moved all the time, and I lived with all of these different families. That is very stressful. Maybe not being able to say out loud, "I hate this" or whatever my feelings might have been. I wheezed and that was where my stress went, to my asthma. I read Joan Didion's essay, "In Bed," about her struggling with migraines and it made me think about my asthma and I started to write the piece. It was through writing that I began to notice how my asthma had been a constant in my life, how it had been representative of the stress. This is somewhat new to me--where I've thought about my asthma from this perspective, as a forty-six year old. As a child I was just trying to survive.
Annie Brewster: I'm really interested in what you said about that you never really consciously thought about this until you started to write about it. I'm really fascinated with the process of storytelling and how that sort of helps move somebody from one place or another. So, can you speak to the process that you went through in writing this and how that helped you and what it meant then to put it out there in a public way and get feedback on it; what that was like for you and what did it take to get to a place where you felt ready to take that on as a writing project?
Sarah Baker: I remember a number of years ago when I started writing, a friend of mine who is a successful writer said, "write what's raw" so I always try to write what hits a chord in my heart. So writing about my childhood and writing about my mother's death is what I tend to write about. This was the first time I wrote about my asthma and it was hard to write about it because I don't have a lot of memory. I had to interview my Dad, I had to do some research, and I had to relive the trauma. I just kept working at [the story] and sometimes felt a little sick after writing but I just kept working. I usually write ten drafts before I show it to any one. I showed it to my husband and he reacted positively. I showed it to a class that I was in and to my teacher and they responded positively. I thought maybe I've struck something here. Then the story sat in my computer for a year; it did. And it was after I started taking a class about the book I'm working on that I decided to send it out. Maybe the year allowed it to percolate so it didn't feel as scary. Once it was out there, the feedback was great. People came out of the woodwork. People that knew me as a kid, that knew me when I had a collapsed lung or people who knew me as a kid who didn't know any of this. They were all very moved by the piece. That was very powerful. My mother-in-law said, "It’s like you've come out"...my interior world had been different from my exterior world; people might see me as this successful or...successful is the wrong word but kind of, um...what is the word I'm looking for?
Annie Brewster: Together…
Sarah Baker: Together... you know, with a lovely house and a great husband and wonderful children and all of that; I have a wonderful life but I had this crazy history that people didn't know about so all of a sudden they know this side of me. That has been really powerful.
Annie Brewster: How come people didn't know about that part of you? What kept you from sharing it before this essay?
Sarah Baker: Well, I think that people at the time knew about it because they could see me being sick but then I think I just put everything, all of these pieces of me, on the back burner and I just kept moving forward, trying to almost erase the past. I think that is probably what happened.
Annie Brewster: Do you feel like there was ever any shame in it?
Sarah Baker: That is a really interesting question. I don't know. Maybe it felt like a weakness or something that I had to put aside? I never even brought it up. I didn't even think about my asthma really until I was writing this piece, thirteen years after my asthma went away. It's only now that I'm beginning to think about my relationship to my asthma and why I might not have talked about it for all of those years. I don't know.
Annie Brewster: It's always a really slow process that we don't necessarily know that is going on or sort of coming into a place where you're ready to write about it or integrate it into your life but, can you name sort of what might have changed in you that made you feel like "alright, I'm ready to write about it"? Or was it all unconscious?
Sarah Baker: The Joan Didion piece gave me permission. I thought, "she wrote so powerfully about something that nobody sees"—migraines--and even though I don't have migraines, I don't suffer from them thankfully, the story gave me sympathy for people who do suffer. I know a lot of people who suffer from migraines. The story made me think differently. I felt with my asthma...I feel when I write any of these personal stories...I have to get over a hurdle at the beginning but then I begin to feel, we are all struggling in our own way, whether it's with loss or trauma or illness or whatever it might be so if I can tell a story, maybe a few people out there in the world can say, "Yes, that was me, too." A number of people responded to my story on the Commonhealth blog, on my blog, and NPR ran it on their blog with their own stories of childhood asthma. It just kind of adds to the conversation of life. I used to feel ashamed about writing these pieces. "Who's going to care?" "Why would anyone care about my life"? But I’ve learned that these stories do resonate. I'm drawn to personal stories whether in books, memoirs or articles... I thought, "Why shouldn't I be a part of this dialogue?" I have a kooky story. I think I can tell it with a little bit of humor or something that will make people keep reading. So, I’m just going for it.
Annie Brewster: Do you feel like writing about it has changed your relationship with other people?
Sarah Baker: Absolutely. Even though I’d written it a while ago, when it came out it was very raw for people. One friend, for instance, stopped me on the street. She's a therapist, and she said, "I'm going to think very differently about the kids I treat that have asthma...a lot of it is from the stress of their homes." Because I wrote the story a while ago, by the time it was published, I was closed off to it. But for people who had just read it, it was still very raw. It was hard for me sometimes to know how to respond because the enthusiasm and the kindness and the overwhelming support was so powerful. I didn't always know how to respond. I just tried to be gracious.
Annie Brewster: Did your children know all this about your asthma and your life and the struggles and your mother's death before you wrote this or was it new for them to read it, or did they read it?
Sarah Baker: They haven't read it yet. I'm wondering when to show it to them. They’ve heard bits and pieces of my story but they haven't read any of my writing yet. I was just thinking today about when I would show it to them. I showed it to my nephew, my brother's son, who is a junior in college. He responded so thoughtfully. I think the article helped him understand his father's story, and helped him understand me. I will show it to my kids when I feel they're ready.
Annie Brewster: What do you think it would take for them to be ready?
Sarah Baker: Well I don't want to scare them. I don't know...maybe I am underestimating them. I have a fourteen year old and an eleven year old. Maybe after this interview, I will go home and show it to them and see what happens.
Annie Brewster: That would be interesting. I'm interested in the motherhood piece and I was really moved by your story of your mother's illness and her death and how that affected you. I'm wondering if you can speak to the interplay between that loss and that pain before the loss and your asthma. What was the interaction? Stress you named already but was there more that...it's all so woven together and complex I know, but how do you think those things played off each other?
Sarah Baker: I'm only beginning to learn about that. But I think they absolutely played off each other. In my piece, I quote Senesa who said he’d had a lot of illnesses but asthma was the worst because it was like “rehearsing death.” It’s intense to think about that. I had asthma before she died. She got sick when I was three and I had my first attack when I was eighteen months old so I had already had it. But to have my mother die and then to have this disease that's "rehearsing death" where I couldn't breathe; there has got to be a link there. I don’t understand completely. I am still exploring it.
Annie Brewster: Yes. I was struck by the image of the two of you sort of in parallel, in different hospitals, but across the city from one another, so apart but together in an interesting way.
Sarah Baker: Yes. It must have been impossible for my father who had a full time job in the navy and had to commute between these two hospitals. My mother was at John's Hopkins because they were doing cutting edge research on brain tumors. She actually lived a lot longer than they expected... and then I went to Bethesda Naval Hospital across the state of Maryland. We lived in Virginia. Sometimes my Dad had to drive over 100 miles a day going between the two hospitals. Right before my mother died, my father was in the hospital for an ulcer. That's not surprising. I had been in the hospital for an asthma attack and my mother was actually, she had been at home and was actually put in my hospital, so she could be near everybody. That's when she died. But I never saw her.
Annie Brewster: I'm just sort of talking off the top of my head here but, in hearing you speak and sort of thinking about this image of "rehearsing for death" and her death, do you think in any way that your asthma worked to keep you sort of connected to your mother in a way? Or does that not feel like it fits?
Sarah Baker: I'm learning a lot about that now and I think absolutely. I think when you lose a mother or a parent early in your life and you don't go through the grieving process, I think you become very loyal to the sadness and I think there is a part of you that unconsciously, because you're little and you don't have the words for it, says, "I'm going to stay loyal. I'm never going to be as happy as you were.” And so, yes... I absolutely think that when you lose somebody when you're little, you make these silent pacts with them to stay loyal to the sadness, to stay loyal to what they went through...to keep them on a pedestal and to hold them in this special place in your heart.
Annie Brewster: Do you think sort of unconsciously maybe you would have felt like getting better and not having asthma anymore would be a betrayal of sorts?
Sarah Baker: It’s risky to say any of this because I did have asthma and I wouldn't want to take away from anybody that does have asthma. But, I had a lot of trauma and maybe this was one of my ways of staying loyal to her. I don't know. This is all speculation. It's just curious now as an adult when I don't have asthma and it went away so quickly once I had stability...I'm just now looking at these questions and wondering, what went on really?
Annie Brewster: I think you're right to say that you don't want to take away from anyone who has asthma, and I was wondering that and I was going to ask you, what is your thought on what role two individuals play in creating their own illness and to what degree are we responsible for that? I know that's a big question and it's really complex but...
Sarah Baker: I don't have any authority to answer that question... I can only tell my own story. This is all speculation. My parents were both smokers; it was a time when people smoked. We lived in a house with wall-to-wall carpeting and you know, it could have been that my environment changed, I don't know exactly and I'm reluctant to say that we create our own illnesses. I'm just looking at my own circumstances and wondering. My son has asthma but it's minor and we manage it. He's never been hospitalized. Maybe, my asthma would've been like his. Maybe I would've had it but it would've been milder.
Annie Brewster: I absolutely agree with you, I am very reluctant to say that anyone causes anything but I think it's a complex interplay between genetics, the predisposition that we have and our environment and our stress and our psychosocial circumstances and all of that. So, of course it's impossible to say. And sometimes I think there is just bad luck and that's a factor. Can you say how maybe having lived through both asthma and your mother's death may have changed the way you mother today?
Sarah Baker: Both absolutely inform my parenting They inform everything I do, not consciously maybe; but, I know I have a fear of loss. Also, I had such a crazy childhood that I’ve always wanted to make sure that my children have a happy, joyful, stable childhood. I've made a lot of choices to make sure of that--sometimes even putting motherhood in front of other choices that I might have made.
Annie Brewster: Are there parts of you that you love that you feel came to you because of these difficult experiences in your life? Things that you're proud of; strengths that have come out of that?
Sarah Baker: Well, I do think that I have resilience and grit (two buzzwords these days). I wouldn't wish my childhood on anyone but I did have to learn how to cope and I learned how to be around all sorts of different people and circumstances. They're positives and negatives to that. I think it made me flexible but then it kind of...you reach a point where you become inflexible because you're tired of always trying to accommodate other people. So, there are positives and negatives.
Annie Brewster: I love the image of you're singing and the sort of juxtaposition of the asthma and the singing and the different ways of using your lungs and your breath. I thought that was very beautiful. Can you tell us more about your singing and how that feels to be taking voice lessons?
Sarah Baker: In the beginning it was unbelievable what a bad singer I was. I was inhibited; I couldn't even get the sound out. It took a long time. After four to six months, my teacher realized that I was probably a little tone deaf so then she did some ear training. Slowly, I've gotten more comfortable and I've been able to access the different parts of my breathing and my voice. Recently, she told me I could sing soprano. What a shocker!
Annie Brewster: Do you feel like somehow, I mean I'd be afraid to take voice lessons, it takes a lot of courage. Do you trust yourself more now? Is allowing yourself to sing...does it have anything to do with trust or letting go? Can you speak to that?
Sarah Baker: Absolutely, it has to do with finding your voice literally and feeling that your voice matters in the world and that you're not embarrassed by it. My first year of singing lessons was about quieting my inner critic. The one that says, "No one wants to hear this." Same thing with the writing, you know. My singing teacher was so gentle and kind. She just kept saying, "Don't criticize yourself, and just sing. I want you to sing loudly and I want you to just go for it and don't think about anything other than that." It was through that process, of just going for it and being completely uninhibited, that the sound started to come out.
Annie Brewster: That's amazing. What made you decide to take the voice lessons?
Sarah Baker: There are so many opportunities to sing in the world and I was never singing. I lacked confidence. I wanted to sing at school assemblies, or birthday parties, or wherever, and feel good about it. So, I just went for it.
Annie Brewster: Do you think that writing about all of this and in a public way has changed your relationship with your father? Is his still living?
Sarah Baker: Yes, he is still living
Annie Brewster: And your brother, you said you had a brother. Do you have any other siblings?
Sarah Baker: Yes. I have a brother. I also have a half brother and half sister.
Annie Brewster: So, has writing altered those relationships?
Sarah Baker: Yes. I think for my brother who has his own business and works very hard, I can write these stories and send them to him. He can relive with me some of this trauma that we just had to run as fast as we could away from. My writing has made me closer to him. I’ve given my dad some of my pieces, not all of them. I'm worried that he might feel hurt by them. One piece I gave him, he responded by saying, "Well, I actually didn't think that paragraph was accurate." It’s all perspective. It was accurate for me and so, I'm sensitive about showing things to him because I'm protective of him but, I also...It's through my writing that I've gotten to know my own story. I'm not blaming anybody at all. I'm not trying to judge them. I'm just trying to tell the story. I'm getting more confident with showing him my work and not worrying. I have some essays, though, that nobody has seen except for classmates or very close friends. I worry that people will be offended by them.
Annie Brewster: Tell me about the memoir you're writing.
Sarah Baker: I had written a bunch of essays like the asthma story and realized I had about forty-five pages. In them, I kept telling the story of my mother and her death over and over but in different ways. Then I read the book "Wave" which is a spectacular memoir by Sonali Deraniyagala. She's Sri Lankan. She lost her whole family in the 2004 tsunami. It's an unbelievable book. After I read it (it took me two and a half hours and it was painful to read but it was so powerful), I thought she's done an incredible service for the rest of us. I learned what she went through, and how she came out and I thought, "Maybe I can write a book that is a legacy of loss." The story of a little girl who has lost her mother and her father who, as I say was "out to sea" (because he was out to sea, literally), and who lived with her relatives - how I carried that loss into my adulthood. I want to tell a story of how we carry loss and what happens when it's not tended to properly.
Annie Brewster: So, it's a giving back of sorts.
Sarah Baker: Yes.
Annie Brewster: You articulate - you say reading "Wave"-I want to go out and read it now-it tapped into something in you and it's that giving back piece that I'm interested in. What do you think, I mean it moved you, but what else did it offer you? Can you articulate that?
Sarah Baker: First, it is absolutely beautifully written so it is a great example of writing and structure. But more than that…she lost her parents, her children, and her husband and I just don't know how anybody could ever survive from that. She paints this picture of how Elizabeth Kubler Ross in many ways was wrong. I don't know if wrong is the right word but The Five Stages of Grief, you don't pass through them very easily. They are messy and they are morphing and in this book you see that. The other part of the book that was powerful for me was that she had a real community to support her. She had friends and relatives there to take care of her and it took a long time. It took a long time to even think about her family that she lost. And then, how she very carefully pieced it back together with memory where all of a sudden she could go back to her house in London and all of a sudden she could begin to think about her husband and then she could begin to think about her parents. That’s the way grief works. It doesn't happen all at once; it comes gradually and in an agonizing way. She describes it so beautifully and accurately. I wouldn't say that at the end of the book that she, you know you never recover, but she's living her life and she's written this beautiful book and she's helping people in the world who have experienced loss. It is brave of her to have written the book.
Annie Brewster: Absolutely. I also think it is really helpful to see an example of the truth, which is that it's messy, it's gradual; you don't always know that you're going through the process when you're going through it. It's not clean and I think that is freeing to other people who are in the midst of it.
Sarah Baker: Absolutely, yes. A family rents her parent's house, for example. They move in and she can't stand that they're living there. She goes to their house at night and rings the doorbell and runs away. She torments them. This is a woman who is a professor at Columbia now, I believe. I mean she's incredibly educated and that is where grief took her. It took her to terrible depths. She drank. I mean she had a real drinking problem for a while. She really scraped hell; she scraped the bottom. Maybe it was what you asked earlier about being loyal to death, to the deceased. Maybe she thought, "I'm not going to have a better life than you are. I'm going to live an equally bad life." Maybe she was unconsciously creating a hell for herself to show her loyalty to the people she loved and lost.
Annie Brewster: That's well said. Also, I think it's so helpful to see the movement; that you can hit those depths of horribleness and then move out of it and I think that is always so helpful to see when you're in the midst of something. That you're not going to get stuck there, that you're going to pass through. So, do you feel like "Sassy Pants" is back?
Sarah Baker: "Sassy Pants"... Yes! I feel like Sassy Pants is... It is kind of sassy to publish an article about my asthma I think and send it out to the world. You've got to be a little bit sassy to put yourself out there like that. Maybe you have to be a little sassy to sing, especially when you're going for those high notes. So, yes, I think Sassy Pants is back and she's breathing well.
Annie Brewster: I love thinking about this image, again, the singing, I just think it is such a joyful thing and it is so freeing. I love this image of you swaying with the music, with the sound bursting out and it feels really hopeful. I'm wondering, do you feel like you're at some sort of transition point where you're more free to dream about the future and what it holds and letting yourself deserve these things...does that feel accurate? And if so, what are the things you're dreaming about? What lies ahead for you?
Sarah Baker: I'm getting there for sure and I think I'm dreaming about being able to... I never even thought I'd be able to write; I didn't think I knew how. I learned how to write in my forties. I took a grammar class. I started at the beginning. I had been an editor, I think I have an ear for language. But, I had never written a story before. It must be about my forties--you start to look at your life differently and see what you want to get done. I have just gotten comfortable thinking about myself as a writer and actually believing that my writing resonates and that it is worthwhile to write and publish. So, my dream is to write this book, to be able to work through all of these different chapters of my life that are hard to work through and figure out a way to tell it so that maybe my story can help other families or other children out there who also suffer from a loss, like the one that I did. That's one dream. My other dream is to be able to be present--to be able to feel the goodness that is all around me because I'm absolutely surrounded by goodness but I don't always feel it. So my dream is to really see what that is like—to feel present all of the time. That would be amazing.
Annie Brewster: Awesome. I'm excited to read your memoir. Thank you.
Sarah Baker: Thank you.