Posts in Audio Stories
Living with and learning from a potentially fatal, chronic disease

What if you were suddenly diagnosed with a potentially fatal disease just when your life, work and marriage were on track and your plans to start a family where underway?

This is what happened to Sue R. Levy. In 2008, at age 37, she was diagnosed with Pulmonary Lymphangioleiomyomatosis, otherwise known as LAM. LAM is a rare, chronic, progressive lung disease in which the lungs fill up with cysts. The result is gradual destruction of the normal lung architecture, compromised breathing, and in many cases, eventual lung transplant.

Fueled by estrogen, LAM primarily affects women in their childbearing years. With only 1300 documented cases in North America, LAM is poorly understood and at present no therapies of proven benefit exist.

Prior to diagnosis, Sue would have defined herself as happy and healthy. She had a successful career as a marketing executive, she was happily married, and she and her husband had decided to start a family. Though they struggled with infertility, undergoing six unsuccessful rounds of IVF, Sue still felt that this would work out eventually, and that perseverance would pay off.

In her words, “ My whole life I thought the way the world worked is that if you were a good person and you worked hard you could avoid bad things”. LAM changed everything.

Suddenly, Sue was forced to redefine herself as someone with a chronic disease and confront her own mortality. In addition, she had to let go of some of her dreams, first and foremost her desire for pregnancy, as the high levels of estrogen associated with carrying a child would accelerate her lung destruction. Initially, she was angry. What had she done to deserve this? Over time, though, her perspective shifted. She came to accept her diagnosis and she let go of her preconceived notions of how her life “should” unfold.

Today, Sue would say that living with a chronic disease and an uncertain future, while obviously challenging at times, has improved her life dramatically. Her disease has helped her to get in touch with what she really cares about, and has set her life on a new course. With the goal of educating and healing herself, she went to school to study nutrition and became a natural foods chef. In 2011, inspired by how great she felt after making some lifestyle changes, she quit her marketing job and started Savory Living, a nutrition and healthy eating company that provides online nutrition and healthy eating classes and cooking classes, helping others to “eat well and feel better now.”

In addition, Sue and her husband now have two young daughters, conceived using egg donors and a gestational carrier. While the journey was difficult at times, the end result is a beautiful family. Sue feels happier and healthier than she ever has.

In an upcoming follow up piece, Sue will share more about her struggle with infertility and her journey to motherhood.

Originally published on WBUR Commonhealth Blog on April 4th, 2014.

 

Pulmonary lymphangioleiomyomatosis resources:

1)    To learn more about LAM, visit http://www.thelamfoundation.org/what-is-lam

2)    To listen to patient stories and find more information about LAM, visit http://www.lam.org.nz/videos.htm and http://lamaction.org/for-patients-their-families/patient-support/

3)    To locate a patient support group:

  • 301-592-8573 is the number for the National Heart, Lung, and Blood Institute Health Information Center that can provide information about patient support groups.

  • 1-877-644-5864, extension 3 is the number for the National Heart, Lung, and Blood Institute Health and Information Pulmonary Vascular Medicine Branch, which can also provide this information.

 

Living with an Eating Disorder

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


 

Surviving Pancreatic Cancer

At age 51, Loie was diagnosed with pancreatic cancer. At the time of this interview, she had just celebrated five years cancer-free. Loie beat the odds.

On average, individuals with this disease survive 4-6 months after diagnosis, and only about 6% make it to five years. Early diagnosis is rare, as symptoms can be very subtle, or even nonexistent. All too often, the cancer is locally advanced or has spread outside of the pancreas by the time it is found, and surgery, the only curative treatment, is no longer an option. Even with surgery, prognosis is poor, with five year survival rates ranging from 10-30%.

Everyone copes with illness differently. For Loie, focusing on the positive was the key. She didn’t want to hear or think about the severity of her condition. In her words, “I protected myself by not knowing.” She chose not to read a lot about her cancer, and intentionally avoided the Internet. She decided she was going to get better, and, except in rare and fleeting moments, she did not allow herself to consider other options — like an early death. In talking to her young son, Chris, Loie decided to tell him that everything would be fine, even though she was well aware of the grim statistics.

Loie has been lucky, and her positive attitude has helped her along the way.

Listen to Loie’s husband, Wayne, and her son, Chris as well, as they share their experiences of having a family member with cancer.

Story first appeared on WBUR Commonhealth Blog on August 26, 2010: http://commonhealth.wbur.org/2010/08/pancreatic-cancer-kills

Resources:

To learn more about pancreatic cancer, visit

http://www.mayoclinic.com/health/pancreatic-cancer/DS00357

To find support resources and survivor stories, visit

http://www.pancan.org/section_facing_pancreatic_cancer/find_support_resources

To find information and support for families and friends of individuals facing cancer, visit

http://www.cancer.gov/cancertopics/coping/familyfriends

Living With Addiction

Anne grew up with privilege. She was well-educated, and she had resources. She married a Harvard professor. She sent her children to a prestigious private school. On the surface, her life looked neat and pretty, even enviable. But her life had another, hidden side.

For over forty years, Anne has struggled with drug and alcohol addiction, and for many of these years, while injecting amphetamines and heroin, her life was controlled by the need to find her next fix.

I knew Anne while growing up in the 1970’s and 80’s. She was my friend’s mom. I remember her as warm and open, striking in her mini-skirts and stylish boots. While she was certainly more Bohemian than my own mother, I had no clue that she was an addict. I never would have guessed at the suffering that was going on in my friend’s home.

Addiction is a disease with enormous financial and human costs: the National Institute of Drug Addiction estimates that substance abuse in the United States costs more than $600 billion annually. Addiction has been linked to increased incidence of cardiovascular disease, stroke, certain cancers, and mental illness. Intravenous drug use accounts for more than one-third of the new cases of HIV, and for the majority of cases of Hepatitis C, which can lead to liver cirrhosis, and in rare cases, liver cancer.

Medical research has only recently started to characterize addiction as a disease of the brain that preys on and alters the limbic system, the brain’s reward center. This has changed various approaches to treatment, and should also temper our judgment of the individuals who suffer from this condition.

Here, Anne, now 67, speaks about her long struggle with addiction. With tremendous courage, she talks about her pain, the pain she caused others, her numerous attempts to get sober and her many relapses. Anne has been sober for seven years now, a huge accomplishment. But her struggle continues because addiction is a chronic, lifelong disease.

Originally published by WBUR Commonhealth Blog, October 14, 2011

Resources:

To learn more about substance abuse, visit

http://www.mayoclinic.com/health/drug-addiction/DS00183

To learn more about treatment options, visit

http://www.helpguide.org/mental/drug_abuse_addiction_rehab_treatment.htm

1-800-662-4357 is the 24-hour, free, confidential, and multi-lingual National Helpline and Treatment Referral Routing Service for individual and family members facing substance abuse.

http://www.samhsa.gov/treatment/natHelpFAQs.aspx

Living as a Quadriplegic

On March 19, 1991, Larry Brennan broke his neck.

He was 18 years old and suddenly paralyzed. He’s had to use a wheelchair ever since.

At the time of the accident, Larry was a freshman at the University of Massachusetts Amherst; he was in the Bahamas with friends on spring break. The details of the accident are fuzzy, he says, because he was intoxicated at the time, having been on a “booze cruise” all day. He remembers running down the beach, then nothing else. According to his friends, Larry dove into the water. The impact broke his cervical spine.

Initially, when his friends saw him lying face down in the water, they assumed he was snorkeling, and it was several minutes before they realized he was in trouble. He wasn’t breathing when they pulled him out. One of his friends knew CPR, and working with the others, tried to resuscitate him until the ambulance came. Larry coughed up sea water and started to breathe again, but his heart stopped and restarted numerous times before help arrived.

Larry was raised in Wakefield, Massachusetts. In high school, he was a popular, 6-foot-4-inch athlete. He played football and tennis, became an accomplished skier and had many friends. As a freshman at UMass, he was flourishing, and his spring break trip was a highlight.

The accident damaged his spinal cord at the C 5-6 level, basically his lower neck, leaving him a quadriplegic (meaning he has weakness in all four limbs). He can move his shoulders and his upper arms, but not his fingers, and he’s completely paralyzed from the upper chest down, with total weakness in his core trunk muscles and legs. However, Larry’s injury is considered “incomplete” in that his sensory nerve fibers were spared and his sensation is intact. For this, he feels lucky.

Here, Larry talks about coming to terms with his injury and learning to live a productive, happy life — though one he says he wouldn’t wish upon anyone else. He finished college at UMass Boston six years after his injury. Now, he lives alone with his service dog Emmie, and gets help from a home aide. He works full time as a Senior Development Officer at Massachusetts General Hospital; goes on dates, skis and sails, and still hangs out with his high school buddies. As Larry puts it, “the biggest thing for me is that I live a full and active life — similar to how my life would have been had I not been injured. Now, I can’t walk, but this is not so important to me anymore. I care most about my relationships with friends and family, staying active and having fun.”

In meeting Larry, I realized how little I understood about quadriplegia before our interaction. I never really stopped to consider the day-to-day challenges that someone in this situation faces, and the tremendous strength that it takes to overcome these obstacles. Moreover, meeting Larry has made me think about how our fears of the unknown can hinder true and genuine connection in life. When I first met Larry, I was nervous, checking myself, wondering how to be. Should I try to shake his hand or will this make him uncomfortable? Should I offer him food and drink during our meeting or will that be too hard? And so on. Larry has taught me that it is better to just ask, to be direct, and not to let these mundane, functional issues get in the way. Larry has no hang ups about these things, so why should I? We just do some things differently, and that’s all.

Originally published on WBUR Commonhealth Blog, March 9, 2012

Resources:

http://www.mayoclinic.com/health/spinal-cord-injury/DS00460/DSECTION=symptoms

http://www.nytimes.com/health/guides/disease/spinal-cord-trauma/overview.html

http://www.spinalcord.org/resource-center/

Photo Credit: Mark Hunt

Surviving Domestic Violence

At 44, Karin had a successful career and three nearly-grown children. Then, in 2004, she began a relationship that at first felt dreamy but slowly deteriorated. Eventually, Karin found herself in a position she never imagined: as the victim of domestic violence. Initially, her partner seemed lovely. He was a respected member of her community, well known for his dedication to volunteer work and he was amazingly attentive and romantic. 

Over time, though, the relationship changed. It was a gradual progression spanning four years, starting with emotional and psychological abuse, and eventually escalating to physical abuse.

Here, Karin bravely shares her story of surviving domestic violence.

It’s a narrative that illustrates how insidious this process can be, and how difficult it is to get out of such relationships. As a survivor, Karin has struggled with her own shame and the guilt she feels for exposing her children to this situation. Today, after a lot of hard work and self-reflection, Karin feels stronger than ever. “I was determined to come out of this kicking,” she said. “And I have.” She has a great job and volunteers for a domestic violence prevention organization; her grown children are doing well and she is newly married. Karin’s story is a reminder that this could happen to any of us, and underscores the importance of trusting your own instinct about what feels right and what feels wrong in a relationship.

Domestic violence, defined by the United States Department of Justice “as a pattern of abusive behavior in any relationship that is used by one partner to gain or maintain power and control over another intimate partner” permeates our culture. It is estimated that at least 1 in 4 women in the United states will experience domestic violence in their lifetime, and while both men and women can be targeted, the victim is female 85-95% of the time. Domestic violence occurs across all races, ethnicities, socio-economic backgrounds, sexual orientations and religions. Abuse, based on fear and intimidation, can be physical, emotional, psychological, economic, and/or sexual.

On a societal level, the costs of domestic violence are tremendous. Health related costs alone are estimated to exceed $5.8 billion annually. As in Karin’s case, domestic violence typically escalates over time. Homicide is often the end result. It is believed that 33% of all female murder victims are killed by in intimate partner. For the most part, these homicides are predictable and preventable. By educating ourselves about the issue, we can all become a part of the solution.

Most importantly, Karin wants everyone to know that resources are available. If you have any concerns, seek help.

Originally published on WBUR Commonhealth Blog, October 12, 2012

Resources:

For information, services and help for yourself or someone you care about:

The Domestic Violence Services Network, Inc. http://www.dvsn.org 1-888-399-6111

1-877-785-2020 is a 24-hour, free and confidential multi-lingual domestic violence hotline in Massachusetts

To find the domestic violence program nearest you outside of Massachusetts, call the National Domestic Violence Hotline: 800-799-SAFE (800-799-7233).

To learn more about domestic violence and sexual assault, visit

http://www.ovw.usdoj.gov/domviolence.htm

http://www.janedoe.org/learn_more/what_is_dv#What_abuse

To find programs that help people who abuse/control their partners, visit

http://www.janedoe.org/know/know_resources.htm

Living Bipolar

Chris is a 38-year-old Ph.D. student who spent 10 years struggling with and fighting against his psychotic illness. His condition has been hard to diagnose — it’s been characterized as Bipolar and Schizoaffective Disorder at various times. Regardless of the specific diagnosis, the bottom line is the same: Chris has a lifelong mental health condition. He hears voices, and has suffered from paranoia, depression and mania along the way.

His symptoms started when he was a 25-year-old grad student in New York City. Before that, according to his mother, Eileen, he was extremely high functioning — an excellent student, an athlete and a friend to many. She would never have suspected that her son would become ill. But when he grew paranoid and started acting erratically, Eileen began to worry. Ultimately, when she realized how sick her son had become, she knew she had to act. She quickly learned how difficult it is to get help for someone who is mentally ill but over the age of 18. Eventually, after multiple frustrating and unsuccessful attempts to get Chris into treatment, she was told “you need to find three strong men who love him, and you need to go get him, and you need to take him to a hospital,” and this is what she did. Eileen’s story highlights the challenges of navigating the mental health system and of accepting and ultimately embracing her son’s medical condition.

These days, Chris says he is in a different and better place. He has accepted his illness and has learned to manage it with medications, therapy and his support systems. Like any chronic condition, it requires constant monitoring, but he feels equipped to handle the ups and downs and he has become quite skilled at recognizing his symptoms and titrating his medications in response. He is now a Ph.D. student at the University of New Hampshire’s Natural Resources and Earth Systems Sciences program, where he is integrating environmental economics with his background in environmental sciences and engineering. He is engaged to be married and will soon gain a step-daughter. Though his illness complicates his life, he has learned to live with it while maximizing his happiness and productivity.

Unfortunately, and despite much talk to the contrary, mental and physical health problems are treated very differently in our society. We marginalize the mentally ill, and often fail to see the individual underneath the diagnosis. In so doing, we make it hard for such individuals to seek help and to move forward.

Why this double standard? Why the stigma? For many of us, it is easier and less scary to imagine losing physical capabilities than it is to imagine losing control over our mind, even temporarily. In fear, we distance ourselves and see the mentally ill as “other”. This distancing is detrimental on an individual and a societal level. Instead, we should listen and try to understand, and focus on our similarities instead of our differences.

Originally published on WBUR Commonhealth Blog, February 22, 2013

Resources:

To learn more about bipolar disorder, visit

http://www.mayoclinic.com/health/bipolar-disorder/DS00356

http://www.nimh.nih.gov/health/topics/bipolar-disorder/index.shtml

To find information or support for yourself or someone you care about, visit

http://www.dbsalliance.org/site/PageServer?pagename=education_bipolar

For resources focused on families or friends of those suffering from bipolar disorder:

http://www.heretohelp.bc.ca/workbook/family-toolkit

http://www.helpguide.org/mental/bipolar_disorder_family_friends_support.htm

To listen to more stories of individuals living with bipolar disorder, visit

http://www.nytimes.com/interactive/2008/07/16/health/healthguide/TE_BIPOLAR_CLIPS.html?ref=healthguide&_r=0

A Transgender Teen Tells His Story of Navigating Gender Dysphoria

Zachary went through puberty twice, first as a girl, then as a boy, after he started taking hormones. “The second time was a lot better,” he said. “I got excited when my voice cracked, and when I started to smell different,” though he adds that excitedly telling friends that you smell really bad is kind of a conversation killer..

Zachary is transgender. He was born female but he has always known, even before he could articulate it, that he is male. His journey has been challenging, and he suffered from depression for many years as a result. But he is now a confident, happy, inspiring young man

Last month, Zachary, 19, graduated from Methuen high school. He’ll start Wheelock College in the fall, where he has received the four-year, $20,000 annual Passion for Action scholarship for his demonstrated commitment to community service, leadership and scholarship. He plans to become a social worker with the goal of working with LBGT (lesbian, gay, bisexual, and transgender) kids.

Medically, a transgender person can choose to pursue hormonal treatment and/or surgery in order to bring the biological sex closer to the gender identity, though no intervention is a necessity. For female to male trans people, like Zachary, the surgical options include removal of the reproductive organs, “top surgery” (mastectomy), or “bottom surgery” (construction of male genitalia). For now, Zachary has chosen to pursue hormones, removal of his uterus and ovaries and top surgery, but doesn’t feel that he needs to have bottom surgery. He stresses that this is a personal decision, and that no two transgender people are the same.

Sexual orientation among transgender people is equally varied. Zachary identifies as bisexual. He has dated females in the past and currently has a boyfriend who is a female to male trans like himself. Their shared experiences have brought them very close.

I have learned a tremendous amount from Zachary. I now better understand that people are born with a biological sex and a gender identity, and that these don’t always match up. Trying to ignore ones gender identity, or to force it to align with ones biological sex when this doesn’t feel right, is painful and psychologically detrimental. To feel whole, gender identity must be embraced, but when there is incongruity between biological sex and gender identity, as is the case for transgender individuals, society doesn’t make this easy.

Most importantly, Zachary has taught me that we all need to educate ourselves and develop tolerance toward transgender individuals. He is a person with tremendous courage and integrity, but he has been forced to deal with a more difficult set of decisions than most of us, and with societal discrimination.

This week, the Joint Committee on the Judiciary in Massachusetts held a hearing to determine the future of the Equal Access Bill.

This bill would add “gender identity” to the Massachusetts civil rights law for public accommodations. As it stands, this law prohibits discrimination on the basis of “age, race, creed, color, national origin, sexual orientation, sex and marital status” in public accommodations, but does not protect transgender individuals. Put simply, this means that Zachary could be denied service or treated unfairly in a restaurant, an airport, a retail store, a public bathroom, on public transportation and so on. According to a national transgender discrimination survey published this year, up to 50% of transgender individuals in Massachusetts have experienced verbal harassment or mistreatment in public accommodations.

Originally published on WBUR Commonhealth Blog July 12, 2013

Resources:

For general information:

http://www.glaad.org/transgender

http://community.pflag.org/staff/transgender

For parents and families:

http://www.imatyfa.org/resources/parents/

Photo credit: Marilyn Humphries, Greater Boston PFLAG

 

Fighting for Life After West Nile Virus

In August of 2012, Charlie Atkinson was bitten by a mosquito in the garden outside his home in Cambridge, Mass.

From that bite, against the odds, he contracted West Nile Virus. It nearly killed him.

Charlie was in a coma for more than a week, paralyzed in his left arm and right leg. He spent more than 400 days total in two hospitals. He is still recovering.

Before the fateful insect bite, Charlie, married, with four children and nine grandchildren, was incredibly active. He was an avid tennis player, a self-taught pianist, an educator and entrepreneur who started numerous companies. West Nile Virus changed that life.I met Charlie, now 78, on a snowy December day at his home, now retrofitted with a wheelchair ramp and a stair lift. We spoke in the sunny dining room, which has been transformed into a bedroom, complete with a hospital bed and Charlie’s ventilator equipment (he has a tracheostomy and is on the ventilator at night). Charlie lay propped up on his pillows as we spoke, and his warm handshake and bright eyes made me feel right at home.

A self-described “Just Do It” guy, Charlie fought his way back from near death with amazing determination. He surpassed the predictions of the medical community and has continued to make progress: he can now get around with a roller walker and even take steps on his own with a cane.

But beyond his physical comeback, Charlie’s story is also about learning to be a smarter patient; questioning the conventional medical wisdom and seeking out health care providers who are truly compassionate.

West Nile Virus is an arthropod-borne virus (an arbovirus), most often spread by mosquitoes between the months of June and September. It has been found in 48 states (all but Hawaii and Alaska) and in the District of Columbia. It was first detected in North America in 1999 and has continued to spread since that time. In 2013, the CDC reported 2,374 cases and 114 deaths.

With an incubation period of 2-14 days, only one in five people infected will develop symptoms, most commonly fever, body aches, joint aches and other relatively minor ailments. Less that 1% of infected individuals develop serious and at times fatal neurologic illness, including encephalitis and poliomyelitis, like Charlie. While the odds of serious illness are low, the consequences can be devastating. Without any viable treatment options or a vaccine, prevention is essential.

West Nile isn’t something we typically worry about, but after hearing Charlie’s saga, I know I will be more conscientious about covering up, applying mosquito repellent and staying indoors during peak mosquito hours during the summer months.

More importantly, Charlie’s story has taught me a lot about the power of a positive attitude in healing. In coming to terms with his lasting physical deficits, he also acknowledges that there are some things he now does better than he did before his illness. For instance, in learning to use his hands again, he feels his piano playing has improved. In his words, “I now hit the notes more accurately than before I got sick.”

Charlie would like to express his tremendous gratitude to the medical institutions where he received his care, Massachusetts General Hospital and Spaulding Hospital for Continuing Medical Care in Cambridge. In his words, “They saved my life and made it worth living.”

Originally published on WBUR Commonhealth Blog, January 17, 2014

Resources:

http://www.cdc.gov/westnile/index.html

1-888-246-2675 is the Centers for Disease Control and Prevention information helpline for the West Nile Virus and is open 24 hours a day. It is also available for Spanish speakers (1-888-246-2857) as well as those who are hearing-impaired (1-866-874-2646).

Navigating Infertility

In April 2014, Sue Levy shared her story of living with Lymphangioleiomyomatosis (LAM), a rare, progressive and potentially fatal lung disease. Now, she shares her story of navigating infertility, a journey that started years before, but ultimately was informed by, her LAM diagnosis.

Sue, now 37 and married with two young daughters ages 18 months and four years, underwent six unsuccessful cycles of IVF before she and her husband decided to explore alternative ways to have children. They initially pursued domestic adoption but ultimately decided on egg donor and gestational carrier.

A couple is deemed “infertile” when they are unable to conceive after one full year of unprotected sex. In the U.S., approximately 11% of women 15-44 years of age have a difficult time getting pregnant or carrying a pregnancy to term, according to the CDC. While the use of Assisted Reproductive Technology is much more common today than it once was, the term “infertile” is still fraught with negative connotations, especially for women. Dealing with infertility can bring up feelings of shame, failure and loss.

Today, Sue can honestly say that her inability to get pregnant was a blessing, in part because her lung condition is estrogen responsive and can worsen in pregnancy, but mostly because she cannot imagine having any other children than the ones she has now. Her story reminds us that although our plans don’t always unfold as we had hoped, we can find unexpected joy and beauty along the way if we open ourselves up to the possibilities.

Resources:

http://www.health.harvard.edu/topic/infertility-resource-center

Mothering a Child with a Relentless Disease

In 2010, Kate, a single mom from New Hampshire, gave birth to Brook, a healthy baby girl.

Brook seemed to be developing normally and reaching all of her milestones — learning how to sit up and roll over, grasping at toys–until she was 6 months of age, at which point she started to regress. She lost skills she had already learned, and gradually, Kate noticed other things. Brook didn’t seem to respond to her name, she would fixate on lights and just stare and stare, she started dropping toys, unable to hold onto them. Eventually, after a long medical work up, Brook was diagnosed with Tay Sachs disease in 2012, and Kate was told that her daughter would most likely not live past her fourth birthday.

Today, Brook, is three years old and requires constant care. She is blind. She cannot swallow and is fed through a feeding tube. She is having near constant seizures. And she continues to deteriorate. Brook’s older brother Jake, born to a different father and now 9 years old does not suffer from the disorder.

Listen above to Kate’s story of living with and caring for her terminally ill daughter.

Tay Sachs is a fatal genetic disorder. A child is born with Tay Sachs when he or she inherits two damaged copies of the HEXA gene on chromosome 15 (one from each parent), which results in a deficiency of the Hexosaminidase A enzyme and the subsequent build up of a damaging fatty substance in brain cells. The result is a relentess, progressive loss of physical and mental functioning and eventually, death.  A person with one damaged gene and one normal gene will become a carrier with no clinical symptoms of the disease. If two carriers have children together, there is a 25% chance of giving birth to an affected child with each pregnancy.

Tay Sachs, a rare disease with an incidence of approximately 1 in 320,000 in the general population, occurs with increased frequency in certain populations, including Ashkenazi Jews, French Canadians, and Cajuns (from Louisiana). In these groups, approximately 1 in 30 individuals is a carrier, and 1 in 3,500 children will be born with the disease.

Kate, who is of French Canadian descent, had no idea she was a carrier before Brook’s diagnosis. She knew nothing about Tay Sachs, and was unaware that French Canadians are at increased risk. Though pre-conception counseling is available, Kate didn’t know this at the time, and if she had, she might have assumed that it wasn’t relevant to her.

How does a mother manage life when her child is dying? She mothers. Kate spends most of every day in her living room with Brook, an oxygen machine hissing in the background, surrounded by pill bottles, suctioning her daughter’s secretions, moistening her lips, and giving her medication to temper her seizures. Kate’s primary goal is to keep Brook as comfortable as possible in her last days, and she works very hard to achieve this. “So many people for so long would say, ‘You’re so amazing, I don’t know how you do this; This is incredible, how do you manage this,’” Kate says “I would look at them and think, ‘This is my daughter, how can I not do this?’” And every day she tries to spend as much time as possible with her older son, Jake, and to support him through the loss of his sister the best she can.

Story first appeared on WBUR’s CommonHealth blog on November 8, 2013: http://commonhealth.wbur.org/2013/11/extreme-mothering-child-tay-sachs

Photograph: Mary White photography

Resources:

http://www.mayoclinic.org/tay-sachs-disease/treatment.html

http://www.ntsad.org/

My Breast Cancer: Reflections Sixteen Years After Diagnosis

By Leah Meyer

As a social worker at Massachusetts General Hospital in Boston, Sandy often works with young adults who receive potentially life-threatening diagnoses. “I think it’s absolutely jarring”, she reflects on the experience, though not solely in her capacity as a provider. Sandy was diagnosed, herself, with bilateral breast cancer when she was 35.

That first year included bilateral mastectomies, two different kinds of chemotherapy, and radiation. Then followed 15 years of hormonal therapy, so “technically”, she states, “I didn’t end treatment until a little more than a year ago.” Though cancer doesn’t affect her day to day existence anymore, it has certainly not disappeared from her life. She refers to it, wryly, as “the gift that keeps on giving.” She still sees the oncologist every year and waits anxiously for the results of her annual blood tests, and her history as a cancer survivor has forever shifted her self-perception and the way that others perceive of her.

When reflecting on her own treatment, Sandy thinks of the work she does with people in recovery from addiction, citing the value of the “one day at a time” philosophy prominent in 12-step treatment models. “I really took my cancer diagnosis and took life a day at a time…I think I was already living that way in part because of the work that I did,” she recalls, but cancer made this way of life even more pressing. Early in her diagnosis, soon after completing the most aggressive stage of her treatment, she remembers that she stopped saving in her 401K. “In part”, she says, “because you wonder, am I gonna be around for retirement?” She wanted to spend her money, to go on fun trips and do the things she had always dreamed of doing. Nowadays, with the fear of recurrence less of a constant in her mind, she has shifted her perspective slightly. “I have to make plans for tomorrow, but I have to live in today.”

And so it comes back around, her experience in return informing her work. “I think it’s actually helped me be a better social work provider because I know both sides...you know what it’s like.” She urges providers not to make assumptions about patients and their priorities, as she herself experienced when preparing for her own double mastectomy. Sandy, who is a lesbian and an accomplished athlete, recalls that one of her doctors made a comment on how the surgery would give her the “athletic body” that she had always wanted. “That was what I wanted? No,” she corrects, “I’d rather have my boobs.”

Some of the memorable lessons Sandy holds close required a different kind of strength from her usual persistence and fighter’s attitude. As an example, she remembers attempting to tackle a strenuous ropes course as part of an Outward Bound community building activity with her breast cancer support group while in the midst of treatment. Always one to try the hardest route, she fell her first time through, but she got up and tried again, this time taking a gentler approach. “Sometimes the easier way is the better way,” she realized, and she has carried this lesson forward.

She has found the humor in her experiences too, believing that “you can do stand-up comedy about some of the things” that cancer brings along, telling the story of a prosthetic breasts mishap on the golfing range. And there’s always new material. You have to keep laughing.

As for advice to others navigating similar health challenges, Sandy says “don’t let it stop you.” She acknowledges that you may have to “accommodate” the cancer, but you can (and must) keep going. “You can have aggressive cancer and aggressive treatment and still get better,” she reminds us. Also, she encourages people undergoing treatment to identify what kind of support is helpful and to seek it out. Personally, she finds the hushed, knowing prompts of “how ARE you?” annoying, but knows that some people like to be asked. “Whatever works for you, teach your friends,” she urges, “find community.” Finally, and perhaps most importantly, “try to celebrate each day.” Some days, Sandy remembers, “I was miserable, I was sick as a dog. But I still tried to put good things in each day no matter how crappy I felt, and that made it easier to get through.”

Dr. Annie Brewster, a Boston internist and founder of the Health Story Collaborative. Leah Meyer is an intern with Health Story Collaborative and a student at Yale College.

The Reverberations of Rape: Orna's Story

Seven years ago, Orna's life was irrevocably changed when she was abducted, tortured, and raped. Though she survived the attack, her wounds are still healing.

In this intimate podcast, Orna describes the mixed medical and psychological care she received, the complexity of tending to both her personal health and the legal process, and how she is learning to navigate the healing process. Orna suggests how healthcare providers can provide more sensitive care, offers solace and inspiration to other survivors, and shines a light on the racism and stereotypes our culture perpetuates about rape. We must collectively commit to dismantling the misnomer that rape only happens to young white women: it also happens to men, people of all races and cultures and ages, LGBTQ individuals, prisoners, and military personnel.

Suggested Resources:

The nation’s largest anti-sexual violence organization provides advocacy, resources, and educational information: RAINN.org

National Sexual Assault Hotline: 1.800.656.HOPE

Article on racism and rape: http://endsexualviolence.org/where-we-stand/racism-and-rape

For survivors: http://endsexualviolence.org/forsurvivors

Online forum for survivors to anonymously share their stories, and read others to see they’re not alone: Brave Miss World Speak Out

Daniel: Healing From Sexual Abuse By A Teacher

By Annie Brewster

Daniel and I went to the same private school I attended for high school. I was older by a few years and don’t remember him well, but he seemed like a happy enough member of our school community. It wasn't until last year, 30 years after graduating, that I learned about the abuse: In middle school, he was molested by an English teacher. Students, faculty and administrators stood by, most of us oblivious but some aware, all silent and all somehow complicit.

Now 45, Daniel shares his story with strength and compassion, speaking out straightforwardly and unapologetically about this trauma and the effects it had on his health. He has not only recovered, but is also helping other individuals who have experienced similar abuse, or are at risk of it.

Trauma associated with the abuse of a student by a teacher is especially insidious, as the perpetrator is often a respected authority figure, someone the student wants to please, typically held in high regard. For Daniel, it was difficult even to label what was going on as abuse. Instead, unconsciously, he internalized shame. Years of depression and anxiety ensued, and an ongoing journey of recovery. Today, Daniel says that the struggles he has faced, though unwanted, have made him stronger, and ultimately healthier, by encouraging depth of perspective, self-knowledge, resilience and empathy.

Recent reporting by the Boston Globe has highlighted the prevalence of sexual misconduct by staff at New England prep schools, with over 100 private schools identified as potentially involved in such incidents over the past 25 years, and more than 300 alleged victims coming forward.

In most cases, like Daniel’s, school administrators did not intervene to stop the abuse when they should have. Allegations were not taken seriously, and abuse survivors are justifiably angry. But Daniel would say that our school responded admirably, with compassion, respect and action, when he approached administrators regarding his abuse a decade ago -- more than 18 years after it occurred. The school, with Daniel’s help, has become a role model in guiding other schools through this process.

Daniel recently brought a civil suit against his abuser, and is satisfied with its settlement. Recent changes in the law extending the statute of limitations on sexual abuse of minors allowed him to bring the suit, and still more such legal changes are likely in the coming months.

Daniel says that recovery, both from depression and trauma, is non-linear and involves slowly naming and making sense of what has happened.With time, he has learned to integrate the complexity of his situation, to appreciate his vulnerability and his strength. He is a survivor of trauma, and so much more. No one part defines him. In this acceptance, he is whole.

Originally posted on the WBUR CommonHealth Blog on December 28th, 2016

Living Consciously While Facing Death

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:

The Conversation Project

Life in Stage 4: Terminal Pancreatic Cancer

Gretchen Hunsberger was first diagnosed with stage 2 pancreatic cancer in 2013, which she successfully treated with radiation and chemotherapy. But fourteen months later in spring 2015, her remission ended when the cancer returned, this time at stage 4.

In June 2015, Gretchen shared her courageous story about deciding to forgo medical treatment and embrace her impending death. Gretchen realized the unparalleled value of community, and how much can be learned from individuals living in Stage 4. She mourned the loss of her vitality, but through mindfulness and meditation practices, experienced joy in the wonders of this world.

Gretchen passed away on August 31, 2015.

Resources:

To learn more about pancreatic cancer, ways to get involved, and sources of support, visit Pancreatic Cancer Action Network.

For inspiration on navigating cancer, explore Bernie Siegel and Mark Nepo's writing.

On the Road to Recovered: Jenks's Story

At the age of 17 at an all-male boarding school in Virginia, Jenks developed what would grow into a life-threatening eating disorder. It began with over-exercising, and quickly spiraled into bulimia, stimulant abuse, and drug and alcohol addiction.

Over the following ten years, the eating disorder ruled Jenks’s life and took uncountable things away from him. He hid his disorder for years, ashamed to tell friends and family that he was struggling with what was considered by many to be a “women’s disease.” It did not help that he did not know any males with eating issues to whom he could turn for advice.

Eventually, Jenks opened up to his family about his co-occurring issues with alcohol, drugs, and food. Hospitalizations and treatment programs helped him address his substance addiction first, but in the absence of those behaviors the eating disorder surged. He realized his pattern of trying to fill the void he felt inside with whatever was at hand: drugs, alcohol, relationships, exercise, or food.

Now 31 and in solid recovery, Jenks discusses the mixed feelings he had for years about letting go of his eating disorder: part of him wanted freedom, but another part was unwilling to give up the rituals. When Jenks began his journey towards recovery in earnest, at a treatment center called A New Journey in Santa Monica, California, it was not without stumbles.

From these experiences, Jenks realized his passion for service. He describes how his recovery is based in giving back to others who are themselves recovering from alcohol and drug addiction and eating disorders. One of Jenks’s primary missions is to encourage men to engage in open conversations about their struggles with food, which he believes is the essential first step to healing.

Originally from Rock Hill, South Carolina, Jenks currently resides in Venice, California where he works as a House Manager in a sober living house for men.

On the Road to Recovered: Kim's Perspective

Some of the most impactful people encountered in our recovery journeys are our treatment providers. They provide invaluable education, compassion, faith in our capacity to heal, accountability, and the best of them help us relearn how to trust.

I met Kim Wyman, the dietician at Monte Nido Vista, my first night of residential treatment. It was a Monday, the day every week when those furthest along in recovery prepare dinner for the whole house. To bless the beautiful meal they prepared and to cultivate a positive mindset before eating what for some of us was quite a challenge, Kim sang “Amazing Grace.” Her heavenly voice, glowing presence, and palpable joy for sharing this food in community brought me to tears.

Though we only worked together for ten weeks, Kim’s wisdom resounds in my head to this day, guiding me to stick to recovery’s course and reminding me of the healthy ways to meet my needs. In this podcast, she shares some of her perspectives on the process of healing from an eating disorder.

How we feed ourselves is an expression of how we feel about ourselves. Sometimes the most effective way to change how we feel about ourselves is to change how we feed ourselves. Kim considers Recovery to be a process of Recovering Self. She elucidates the different parts of Self that need to be actively, compassionately cared for, and explains how one must separate physical needs from emotional needs (to be seen, heard, witnessed, and acknowledged) in order to meet them all appropriately.

Activating sensory experience is one of Kim’s hallmark methods for recovery. She encourages people to get out of their heads and into their bodies by seeking pleasure, enjoying nature, and cultivating a loving relationship with food through the creative act of cooking, truly tasting food, and eating with others.

Kim explains the 3 tenets of recovery – never weigh yourself, journal, and reach out to others – and also offers advice about how to find the best dietician for you.

In addition to being a Registered Dietician, Kim holds a Master’s in Public Health. She has been working primarily with men and women who struggle with eating disorders since 1997.

On the Road to Recovered: Thomas's Story

Eating disorders are grossly under-recognized as a condition that affects not only women and girls but also men and boys. Because of this, when Thomas developed anorexia at age fourteen he was faced with the added challenges of combating stigma, finding treatment, and connecting with male peers undergoing similar experiences.

After a hospital stint that restored his physical health, Thomas was declared “cured,” but his emotional problems remained unaddressed. He relapsed several years later, and this time struggled primarily with orthorexia. Undeterred by the obstacles facing men with eating disorders, Thomas took his well-being into his own hands. He made it his mission to cultivate the community and comprehensive understanding of holistic wellness that enable someone to truly begin the journey of recovery.

Thomas recalls how small his world became when he was in his eating disorder, and how obsessed he became with controlling not just food but everything in his life. He shares the techniques and tools he adopted -- like writing -- that helped him detach from ED thoughts and behaviors.

As an eating disorder recovery activist, Thomas decries the insidious gender and age discrimination in eating disorder treatment and awareness models across cultures. Societally imposed appearance standards plague men too, and it is not unusual for them to remain undiagnosed despite showing hallmark symptoms of eating disorders. Thomas’s story calls upon us all to recognize that men get eating disorders too, and to help expand treatment options and shift the recovery culture to be more inclusive.

Originally from Sydney, Australia, Thomas is a student in Tübingen, Germany, pursuing two degrees: one in Communications majoring in Media Production and the other in International Studies majoring in German. Learn more about Thomas’s work as a wellness coach, health activist, creative producer, and author of You Are Not Your Eating Disorder on his website: http://www.thomasgrainger.info/.