Posts in Blog
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/

Ouch

Putting the pieces of pain together can’t be done by just asking, “Where does it hurt?”

I have always been somewhat accident-prone. Each time I tripped and fell as a child brought the same routine. I would sit on the edge of the tub in my parents’ bathroom with a bleeding knee and a tear-streaked face as my mom or dad got out the Band-Aids, Neosporin, and the despised hydrogen peroxide (it stung too much when it fizzed). I would point to the scrape and roll up my sleeve to reveal any other “boo-boos.” I would leave their bathroom with my lacerations clean, my face dry of tears, and feeling okay, albeit a little achy.

Nearly fifteen later, as a sophomore in college, I shadowed Dr. X every Wednesday afternoon for the practicum component of a semester-long course on Medical Professionalism. In Dr. X’s office, many patients would come in with a laundry list of pain, soreness, discomfort, and hurt. The question “Where does it hurt?” seemed insufficient to understanding their pain fully. The patient may have struggled to push back on Dr. X’s hand with their face. They sometimes found it difficult to answer inquiries such as, “When did the pain start?” or, “Is it radiating?” All of these are pieces of the understanding required to provide adequate and appropriate treatment. Doing so demands the asking the patient multiple pointed questions while also testing them physically. This understanding appeared to be elusive and difficult to acquire for three main reasons: time, creativity, and trust.

Time

During my Wednesdays with Dr. X, I often noticed a tension between the care patients want and the realities of care in our current healthcare system. Patients would often try to show her pictures of their grandchildren or a recent vacation. Sometimes, they, an aging parent, wanted her to explain over the phone what was wrong with them to a concerned child who could not make the appointment. She always obliged as best she could but the system in which she provided care made it difficult. Dr. X was known in her practice for seeing roughly half as many patients as her fellow physicians. She often mentioned to me how difficult it was to accommodate these seemingly irrelevant components of a patient visit when they were often what made the patient most comfortable and most inclined to tell their story.

The doctor’s visit with the patient can only last so long, for other patients need care too, and there are only so many hours in the day. Thus, even when the “right” questions are being asked, patients may not have the opportunity to fully translate their feelings, aches, and pains into words with context (a mosaic of experiences, emotions, environment, and everything in between). As a result, it is challenging to gain a strong understanding of what they are experiencing and subsequently make a suggestion about how to treat their condition(s).

Creativity

I often noted Dr. X’s inventiveness on our Wednesdays together, inspired by her ability to ask questions that led her closer to a diagnostic truth regarding the patient’s experiences. Sometimes people are insecure about their diets, how much they exercise, how often they take a prescribed medicine, and other areas of their lives in which they are not perfectly compliant with doctors’ orders. Thus, we are less likely to offer responses to a provider’s question that allow them to help us, for we are trying to protect ourselves without even realizing it.

This reminds me of visits to the dentist. When the hygienist asks if I’ve been flossing as she scrapes and polishes my teeth, I know that I have to be honest because she has the proof right in front of her. But we all often lie, feeling sheepish for not doing what was asked of us.

Sometimes a matter-of-fact question like, “Do you go to the gym regularly?” is sufficient for a useful answer that guides the doctor to a diagnosis. However, sometimes it seems more appropriate and productive to ask, “What is your daily schedule?” This gives the patient a chance to tell the doctor what they want, be it that the entirety of their exercise regimen consists of walking to work, or that they stop at Chick-fil-A on their way home for dinner. Although this question may not have appeared at the start to have a direct correlation with healthy eating/regular exercise, it may make the patient more comfortable and allow for a more organic conversation. When Doctor X asks more flexible and open questions, this allows for more creative and varied responses that are generally more constructive toward devising a care plan.

Trust

Meeting a patient where they are in a non-judging, kind, and sensible manner, they are much more likely to open up and let the provider know what hurts and how they feel. I trusted my parents to clean my wounds after a fall off my bike and bandage me all up, pointing them to the areas in need of a little love. Similarly, I observed Dr. X’s patients explain pain “at a level eight” that keeps them up at night with a trust that she will take their words and turn them into a diagnosis and treatment that gives them relief.

---

Although all patients are different, everyone expects individualized care from their doctor and are usually hoping to be healed. Time, creativity, and trust are crucial pillars that support how the provider meets their patient’s needs by putting their symptomatic puzzle together into a diagnosis.

When I was a little girl, I expected my parents to take my skinned knee and clean it up so that I was good as new. With Dr. X’s patients, their complicated aches and pains require more than just a Band-Aid, but she does have the power to offer them solace. I hope one day to be able to provide antidotes for my patients’ pain, and will strive to ask questions that allow me to do so.

Hannah Todd is a rising senior at Rice University, where she is majoring in Spanish and Policy Studies with a minor in Medical Humanities. Additionally, she is concurrently pursuing her Master's in Public Health at the University of Texas and ultimately plans to attend medical school, which would allow her to integrate personal, academic, and professional experience into care for and policy regarding children with medical complexity.

The Big Questions and Gray Areas: How I Grew During Third Year of Medical School
"Three Pairs" by Nicolette Overton

"Three Pairs" by Nicolette Overton

“It was incredibly hard. I learned more than I ever thought possible.”

My childhood friend Allison had asked me about my third year of medical school, which is notorious for being challenging, overwhelming, exhausting, rewarding, and exhilarating.

The first two years of medical school are typical school with weekday classes and unit tests every few weeks. Then during third year (called “core clinical” year), we are immersed in the day-to-day work of being a physician. We spend approximately 8 weeks working with resident teams in the hospital in each of the core medical disciplines: internal medicine, surgery, pediatrics, obstetrics/gynecology, and psychiatry. At the end of each rotation, we complete a national exam.

I went into third year expecting to apply, reinforce, and build upon the book knowledge accrued during my first two years of medical school, blissfully unaware of the uncertainties and philosophical challenges inherent to a patient’s medical care. But during third year, I mainly had to learn acceptance. Acceptance that medical decisions are rarely obvious, that internal validation need not be secondary to external validation, and that the best patient care starts with proper self-care.

As medical students, we have a vague understanding of the limitations of medicine. A Wall Street Journal article entitled “Why Doctors Die Differently” by Dr. Ken Murray details the phenomenon of medical professionals utilizing fewer medical services than the average American when making end-of-life decisions. Medical professionals witness patients receiving interventions that prolong the days, but sacrifice the quality, of life. People who work in medicine see the tolls that CPR, feeding tubes, and ventilators place on already vulnerable patients. The general public has been primed by the media to see these treatments as more often life-saving than not. Those without medical backgrounds hear what is possible; but medical professionals recognize what is realistic. During medical school, we are taught the contraindications to certain procedures or treatments. There is rarely discussion about what to do in that murky in between: when something can be done, but may not be in the patient’s best interest.

I will never forget a patient I had on internal medicine whose daughter demanded he be “full code”, meaning that if the patient went into cardiac arrest he would receive CPR and a breathing tube to be kept alive. The patient was 88-years-old, with metastatic colon cancer and an infection in his blood. I felt for the daughter of the patient. She had no other experience with this sort of care. I also felt for the medical provider, who described that giving this patient CPR would be inflicting immense pain and suffering (ribs break during CPR) to a patient who had an already poor prognosis.

These situations were common in the hospital. In these moments, I felt as if I existed in limbo. I resided in the in-between space; I was both the medical professional and the patient’s daughter. It was from this vantage that I realized everyone has the same goal: self-preservation while acting in the patient’s best interest. Each side just approaches the situation from a different angle.

End-of-life discussions were the moments when I grew the most. All of the physiology, pharmacology, and anatomy that I fervently studied meant very little when trying to quantify the quality of a patient’s life. I came to understand that sometimes, the best thing to do is step back, assess the bigger picture, and ask ourselves what we are trying to accomplish.

I also took stalk of my own life during third year. I have always put pressure on myself to be “the best” and honed study skills over the years so that I know what I need to succeed. In third year, the evaluations by our attendings and residents are also factored in to our final grade. The way a student’s personality, interests, and sense of humor jived with a resident’s often reflected the student’s grade more than anything else. In the beginning of the year, I would often change my interests and style to fit that of the attending. I approach medicine from a bio-psycho-social perspective, but many of the doctors with whom I worked did not. Often, a doctor would scoff at the socio-economic factors involved in the patient’s health. I would feign disinterest, if only to appease the resident. As the year went on, I came to value my opinion of myself more than any one attending or resident’s opinion of me. Patients went out of their way to thank me for my help and ask for me to be there with them during procedures, which reassured me that my approach is valid. Though I did not always receive the best numerical grade, I was able to sleep better knowing that I provided patients with what I believed to be the best possible care.

Third year forced me to consider the big questions. I needed to come to terms with the impossibility of being “the best”, realizing that it can be easy to become so hyper-focused that we neglect what’s truly important. I faced my fears: not only will I not excel at everything, but I can’t expect myself to. I realized that ethical gray areas exist, and that what I typically worried about didn’t really matter. I had to start balancing self-care with self-actualization, and for that I would not trade anything.

Alyssa Wohl is a now fourth-year medical student from New York. She is hoping to work as an Adolescent Medicine doctor. She enjoys chocolate, yoga, and spending time with her two pugs.

Buy Me Some Peanuts

It was a humid night in June,
One of the hottest days of the year.

You could feel your hair standing up on its end,
As a cold and warm front collided.

It left passers-by wondering if the lightning would ever stop.

It did.

So people believed that the storm was over,
That all was well.

I was too loose.

A group of us were going to Fenway,
First game of the summer,
First beer of the week.

The change in weather felt like a good omen,
We bantered as we walked up to Yawkey,
Taking in the smells of Franks,
The shouts of vendors,
And the sight of RED.

As we moved past security,
And scalpers that hounded,
We made our way to our seats.

Suddenly,
To the right of me,
I heard a sickening sound.

Like the thump of a bird as it hits a window,
Or the crack of a gun as it soars through the air,
Or the split of a head as it meets concrete.

A man lay,
Cane sprawled in front,
Unmoving.

RED blood started pooling,
Pouring out of both ears,
Like my beer pouring out of its tap.

People were screaming,
But I couldn’t hear.

I kept thinking,
He is right next to me,
DO SOMETHING.

I thought back to the CPR training I had taken two summers before,
Was this it?
Is this what I was supposed to do?
Is this the final test?

I got confused and spun in a circle,
Walking around next to him,
Hoping that suddenly I would know his diagnosis,
As the loops straightened out in my head.

Looking,
Gaging,
Watching,
But not acting.

THANK GOD.

Someone else nudged him
Someone else was on a phone,
Someone else said help is on the way.

THANK GOD SOMEONE ELSE IS HERE.

My friends call me over,
Terrified,
But they know they are ok.

They don’t know him,
He’s not their dad,
Uncle,
Or brother,
But I know him.

He was standing right next to ME.

Just that morning,
I was telling someone about my degree.

What do you study?
Medical Humanities.
What does that mean?
EMPATHY.
HELP.
CARE.
LOVE.
SUPPORT.
Oh ok. I get it. We need more people like that.
I AGREE.  We need more people like that.

NOT
Running away,
Waiting for someone else to step in,
A FRAUD.
A PHONY.
A DISGRACE.

As the stretcher wheeled itself,
And four EMTs rushed after it,
I considered chasing after them,
I felt sick.

I’m sorry man!
I didn’t know what to do.
I’m sorry man!
I panicked.
I’m sorry man!
I’ve never seen blood pouring out of a brain.
I’m sorry man!
I haven’t signed up for this.

But I didn’t.

Maybe I’m not EMPATHETIC.
Maybe I’m not destined to:
HELP.
CARE.
LOVE.
SUPPORT.
Maybe we need more people like that.
I AGREE. We need more people like that

Sarah Ramsey is an incoming senior at Boston College with a major in Operations Management and a minor in Medical Humanities.  She is the Managing Editor of the Medical Humanities Journal of Boston College and a trip leader for the Appalachia Volunteers.  Sarah aspires to use her business background to improve and expand health opportunities.

Where it Hurts

The day I learned that I needed hip surgery, I cried tears of relief.

On September 23, 2013, I was playing in a JV field hockey game when all of a sudden, after passing the ball to a teammate, I felt something go wrong.  It was… a pop?… a snap?… a tear?… and it came from somewhere in my left backside.  I could not identify precisely where—in my lower back, upper hip, or glute—I felt it.  As I crawled off the field, I struggled to assemble an explanation to provide the athletic trainer.  To this day, I cannot say exactly where it was or what it felt like, but I do know, as the past three and a half years have proven, that something was not right.

For the first eleven months after my injury I was diagnosed with a torn muscle in my hip, but physical therapy did little to relieve my pain.  I began to see an orthopedic surgeon specializing in hips, who saw nothing notable on my MRIs and encouraged me to continue treating with physical therapy.  After months and months of hard work without relief from the pain, I started to worry that I was somehow doing it wrong.  Finally, a new MRI of my hip, this time done with contrast dye, showed torn cartilage in the joint.  This would require surgery to repair.  When, after a year of persistent and unidentifiable pain, as well as numerous consultations with hip specialists, a surgeon walked into my examination room and claimed that he knew exactly how to cure my pain, I sat on the table in front of him and sobbed.  The recovery would be long and painful, but at least it would mean I was healing.  At this point I would have done anything.

After my surgery, I completed nine months of physical therapy to rehabilitate my hip and the rest of my body.  But as the physical therapy came to an end, I noticed that something still felt off.  I occasionally had that same original pain; it was a pain distinctly different from the normal soreness of post-operative recovery, and I was all too familiar with how it felt.  Worried that the operation had failed, I tried to ignore my discomfort for a year and a half.  I was terrified that if the surgery had not provided a cure, then nothing could.  This past December, after the pain suddenly grew much worse, I finally decided that I could no longer ignore my fears.  I scheduled a follow-up appointment with my hip surgeon, who referred me to a spine center to look for other possible causes for my pain.  To this day, my doctors and I are still searching for its source.

My pain taunts me.  It comes and goes.  It moves from place to place.  It floats, it hovers, over my mind and body, cruelly defying articulation.  The English language offers a myriad of terms to describe pain: sharp, dull, burning, throbbing, sore, stiff, tender… the list goes on.  And yet, my three-and-a-half-year search for the words to most accurately capture my experience has left me with the following clumsy explanation: most of the time it does not feel quite like a throb, but more like a series of discrete pinching and tugging sensations with each movement of my lower body, located somewhere between my sacroiliac joint and L5 disc; other times—when I sit or stand for too long—it aches across most of my lower back.  Sometimes, though, the pain deviates from both of these descriptions.

Without looking at a calendar or an MRI report, I can list off the top of my head everything I have done in the past three and a half years to try to relieve this pain—five MRIs, a CT scan, countless X-rays, six specialists, two chiropractors, two injections, and one unsuccessful surgery—including the dates on which most of them took place.  But, despite my three and a half years of familiarity with this injury, I cannot explain how it physically feels.

Three years ago, I spent my time training for the sport I loved, pushing through the pain of conditioning and doing everything I could to prevent the pain of injury.  Now, I spend my time catering to physical pain, altering my movements and avoiding certain motions altogether.  I prepare for each doctor’s appointment by obsessively practicing my story—the words I’ve carefully picked to best convey how the pain feels—in my head.  I brace myself for the disappointment of watching yet another medical professional fumble for a diagnosis.  And I desperately hope for the opposite: I hope that one of these appointments will lead to definitive answers.  I hope to one day again cry tears of relief like those I cried the day I believed in the miraculous powers of hip surgery.

This piece was originally published in The Medical Humanities Journal of Boston College, Volume 3, Issue 1, Spring 2017.

Evelyn Caty is currently a sophomore at Boston College majoring in Biology and planning to minor in Medical Humanities.  She works as an EMT for Boston College Emergency Medical Services, and hopes to pursue a career in health care in the future.

The Show

This week in shadowing, we saw a coronary artery bypass. Because we shadow anesthesiology, we get to see the doctors and nurses set up. It is like setting up a show, everything must be done a certain way in a certain order. From inserting the catheter to carefully draping him so only the necessary areas of his body were exposed (in his case, his entire torso and his legs) and even unwrapping the towels a certain way, everything must be done just so and this was all before he was even cut open. A nurse got us step stools to stand on so we could see. The surgeons walked in at the last minute, taking the drill and the blade and adjusting the lights above. Then, they got to work and we stood there mesmerized until we had to go back to class.

On the walk back to campus, I was in a daze. Upon reflecting on the experience, I found it to be simply bizarre to consider how the show and many others like it are continuing in operating rooms all over the world while we walk outside in the light of day. I couldn't stop thinking about the aftermath of the show. When I was in fourth grade, I was the wicked witch of the west for my class’ version of the Wizard of the Oz and the face paint dyed my face green for three days after. The show was over but I felt like it was still happening to me.

The man who underwent surgery today is going to wake up and hurt. But the surgeons had to break him to fix him. It was simply another day of work for these doctors. The anesthesiologists likely won’t see the patient again, but the surgeons, the ones who weren’t even there from start to finish, will be the ones to see him again when he wakes up. He will go home eventually and have a long, difficult recovery from this invasive surgery.

I admired the patient’s bravery and the surgeons’ dexterity. I was amazed at the anesthesiologists’ ability to compute complex body statistics against powerful medications. If I walked out in a daze and the man under the knife walks out in pain, how do the doctors walk out? Do they hurt, too, when they imagine what it feels like later to have the many sutures down your chest? Do they smile when they think about the years of life they added to his by just doing their job? In the operating room, they are all one show: surgeons, anesthesiologists, nurses, perfusionists, and even us undergraduate students. Outside, we are a fragmented entity that carries only our unique perspective of the show, combined with some input from their explanations.

As a doctor, I will need to learn how to make sense of the show every day. To care for children with medical complexity, children whose needs do not fit inside a single diagnosis or a single medication, I will need to work in teams to put on good shows. But at the end of the day, when I will go home hopefully to my family, I wonder where I will put it. I am an empathic, emotional, and sensitive human being, but I am also driven and dedicated. I believe that I will learn how to integrate what I see of and the role I play in the show into who I am, without losing myself in the process.

Hannah Todd is a rising senior at Rice University, where she is majoring in Spanish and Policy Studies with a minor in Medical Humanities. Additionally, she is concurrently pursuing her Master's in Public Health at the University of Texas and ultimately plans to attend medical school, which would allow her to integrate personal, academic, and professional experience into care for and policy regarding children with medical complexity.

The Courage to Reach Out: What Being There Really Means

An Interview with Kelsey Crowe, Ph.D., co-author of There Is No Good Card for This

By Val Walker

kelsey.jpg

Dr. Kelsey Crowe is an author, speaker, and founder of Help Each Other Out, which offers Empathy Bootcamp workshops to give people tools for building relationships when it really counts. She earned her Ph.D. in social work at the University of California, Berkeley, and is a faculty member in the School of Social Work at California State University. Regular clients for her talks and workshops include UCSF and Stanford University, among several others. She is a cancer survivor and human survivor, each day finding meaning in connection and a purpose driven life. You can reach her at www.helpeachotherout.org

INTRODUCTION

by Val Walker

card.jpg

I first discovered Kelsey’s website, Help Each Other Out, two years ago while doing research on how to comfort people living with serious illness. I loved her honesty, compassion and gentle humor in her writings about how to reach out to people in distress. She was learning to live with breast cancer, creatively weaving her personal experience with her expertise in social work and social justice.  Drawing from her research, insights and stories, she developed an innovative training program to teach relational skills called Empathy Bootcamp. We chatted on the phone a few times about our common interest in the power of empathy and our writing projects. I found her to be warm, encouraging and generous, even though she had recently endured losing her home in a terrible fire. Fortunately, no one was hurt. Later in 2015, I was delighted to hear she was well on her way to landing a book deal, co-authoring a book with the viral Greeting Card designer of Empathy Cards, Emily McDowell. Kelsey and Emily’s book has just come out this January, called There is No Good Card for This: What to Say and Do When Life Is Scary, Awful and Unfair for People You Love.  It’s a wonderful resource with lively, vibrant graphics and illustrations, yet full of practical guidance for the delicate art of reaching out.

Q&A with KELSEY CROWE

Congratulations on your book! What experiences convinced you to write There is No Good Card for This?

Kelsey:  My experience with cancer was an invitation to write my book.

I began writing when my friend in Grad school got cancer, and I wanted to reach out, yet I was hesitant. I felt stuck. What should I say? How did I belong as a friend now? My experience of feeling so powerless as a friend led me to exploring the cause for my hesitancy to reach out to people who were seriously ill. By doing research and interviews, I gathered material about how to offer help for people in times of need.

While developing this book, I worked as a faculty member at California State University, teaching courses on public policy. I found research that convinced me how important it was to publish a guide for reaching out to people in crisis. I created a guide book, and I tried submitting this to publishers, but it didn’t take off at first. And then, I got diagnosed with breast cancer. That changed everything about how I wrote about helping each other, and I revised my book. I realized I needed to make my private life public. I began a website called Help Each Other Out where I could share my own experiences living with cancer as well as share about so many hard times like loss or divorce and others that affect many of us at one point or another. In addition to the Help Each Other Out website, I collaborated with several empathy experts to develop a training program for lay people and healthcare settings called Empathy Bootcamp, which gives people communication tools for being with others in their time of suffering. With a stronger platform developed for my book, I again worked to find a publisher.

Ideally, to enhance my book project, what I envisioned was having it illustrated. I had heard of Emily McDowell, and loved her Empathy Cards, which were going viral in 2014. As a woman who had been through cancer herself, Emily designed greeting cards for people coping with illness. I had wanted a comedic tone to illustrations for my book, and she seemed like the perfect person to approach, but I wasn’t quite sure how to connect with her. Then, one day, amazingly, I received a text from a friend at the New York Trade Show who was sitting right next to Emily! That friend connected with Emily in person, and introduced my book project. Soon I followed up and called her. I found out that she had also wanted to write a book about empathy. We talked, and she was pleased that I had already written and researched so much of the material—that the project was fully vetted and ready for her input. So, we created the book together with her illustrations, humor, and ideas.

Kelsey, what a remarkable story. It sounds like it was “meant to be” that you connected with Emily—fantastic timing, Kismet. You were the perfect duo to create this book!

If you could sum it up, what are the five main takeaways of your book, There is No Good Card for this?

Kelsey:  Here are five takeaways about reaching out to others:

  1. Err on the side of doing something rather than doing nothing. If you are trying to decide whether to reach out or not, it’s better to offer whatever you can, rather than hold back.

  2. You can manage how much you give. Comforting someone can be manageable for who you are, and where you are in life.

  3. It’s much more helpful to listen than to find that elusive “useful” thing to say. Even if you’ve been ill with cancer, it’s important to respect and remember that each person’s experience is unique. Use your experience with illness as a good reason to listen to each other.

  4. Small gestures make a big difference.

  5. Give what you know how to give; and don’t wait to be asked to give.

A few years ago, you started an innovative training program, Empathy Bootcamp. Many of your participants are healthcare providers and caregivers. How do you teach empathy—or how do you teach a way to “operationalize empathy,” as you put it?

Kelsey:  First of all, empathy is about a way to live and not just about doing your job well. Empathy is a part of connecting and listening in all areas of our lives. In the past few years, empathy has become a popular buzz word. People are interested in learning empathy skills, especially in our digital age. In my Empathy Bootcamps, I focus much of the training on listening skills which are essential to putting empathy into action. I present three different categories of listening that each require different skills. It helps to distinguish empathic listening from the other kinds, as empathy is so important as a first step to establishing a relationship.

  • Empathic Listening:  This is listening that builds trust. We start with empathic listening before we go to other interactions.

  • Evaluative Listening: This is where we ask questions to offer up a judgment or assessment.

  • Fact-finding Listening: This is when people ask a lot of questions because they need specific knowledge to be helpful, like when networking with someone to appropriate resources, or when being a patient advocate.

Empathic listening is the kind of listening we should do most of the time. The other forms of listening can come across as judgmental, or take the person off track from what they truly want to talk about--so use evaluative and fact-finding listening with careful discretion.

Yes, so we need to start with empathic listening to establish a relationship with the person before we move into problem-solving mode. I see how empathic listening lays the foundation of trust and understanding before we get to evaluative listening and fact-finding. Otherwise, we feel more like a commodity than a human being!

Kelsey: Right!

I’m so glad you are teaching this vital skill in your Empathy Bootcamp.

On a more personal note, I was wondering if you could share an experience of being comforted when you were first diagnosed with cancer? What were the gestures of comfort that touched you the most?

Kelsey:  It wasn’t so much the gesture itself, but the timing of that gesture. One evening I was so tired, felt so alone and shut down. I was pushing myself hard to make it to the end of that day. And suddenly that evening I received a delivery of flowers. It was so spontaneous and beautiful. Perfect timing.

Another time I told someone I was afraid I was going to die. She just hugged me and held me for a moment, and it helped me so much.

What you said convinces me that the little ways we reach out can be vital. One simple gesture just might just come in the nick of time to get us through hell.

Kelsey: Right. Our words or actions don’t have to be perfect--just reach out. On my worst days, it was such a relief to know someone cared.

So true, Kelsey. It’s been a pleasure talking with you today—I could talk with you all day! Thanks so much.

Kelsey: Thank you!

RESOURCES

Kelsey’s truly helpful site, and packed with resources too:  Help Each Other Out www.helpeachotherout.org

Emily McDowell’s Empathy Cards— uplifting and honest!  www.emilymcdowell.com

A wonderful read and fantastic guide for times we need to reach out:

There Is No Good Card for This: What to Say and Do When Life Is Scary, Awful and Unfair for People You Love.

val.png

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Her next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March 2020 by Central Recovery Press.

Keep up with Val at www.HearteningResources.com

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.

When There’s No One to Call: Caring for Patients Who Lack Social Support

An interview with Dhruv Khullar,M.D., M.P.P.

By Val Walker

Introduction: Social Isolation is an Increasingly Important Topic

Could there be anything more frightening than going to a hospital alone for surgery, knowing that no one will be by your side when you wake up afterwards?  What if you have no one to turn to for help when you become seriously ill?

As a former rehabilitation case manager, I witnessed too many patients without social support. Too often I scrambled to contact any possible friends or relatives to help, and came up short with utterly no one available. I turned to social science research to better understand why people were so isolated. An alarming AARP study in 2012 on social isolation highlighted formidable barriers to social support:

  1. Living alone (Nearly 40% of adults over 65 are living alone.)

  2. Mobility or sensory impairment

  3. Major life transitions/losses.

  4. Socioeconomic status (low income, limited resources).

  5. Location (rural, unsafe or inaccessible neighborhoods)

  6. Being a caregiver for someone with a major impairment.

Moreover, the study revealed that full-time caregivers are mostly women who are often alone without support while struggling to take care of their own health care needs.

 The AARP study convinced me that being socially isolated is most often not a choice. Many societal and economic forces prevent us from being able to count on each other for support. Today we're more likely to find ourselves alone in a hospital regardless of how much or how little we've invested in our relationships. Indeed, in 2012, I found myself alone, stranded in a hospital bed after my hysterectomy because my friend failed to show up as planned. I had no one to take me home, and no one to check in on me during my first days after my surgery. I had made firm arrangements, but people just did not come through at the last minute. This shocking experience opened my eyes to how alone and stranded any of us can be.

Recently I read a New York Times article titled How Social Isolation is Killing Us by Dhruv Khullar, MD, who works at Massachusetts General Hospital. Dr. Khullar's compassionate view of his socially isolated patients sparked my interest in contacting him for an interview. Annie Brewster and I were thrilled when he responded to our invitation and agreed to talk with us.

Q&A with Dhruv Khular, M.D.

You wrote a powerful piece for the New York Times called How Social Isolation is Killing Us. As a doctor at Mass General Hospital, do you personally see an increase in socially isolated patients?

Dhruv Khullar:  All the time--every day, I see real life evidence of how isolated people are. And social isolation is increasing.

Lots of interesting statistics are out there about social isolation, but it’s my personal experience that motivated me to write more about this problem. I see elderly as well as younger patients coping with a lack of social support. We’re now living in a world of smaller families, and we often lack the extended support that larger families once provided. I see older patients living without their core group of support after many of their loved ones have passed away. And many younger people are dealing with the stigma of addiction or mental health issues, so their social support has been thinning out.

In our digital age, we can have 1000 friends on Facebook, but who is going to show up at the hospital for us?  Who is really there in our support system? Many connections we have through social media are only secondary supports, not the one or two people we can really count on in a crisis.

What can doctors do to help socially isolated patients?

Dhruv Khullar:  I think it’s in the doctor’s purview to ask about the social needs of our patients. Doctors have an important opportunity to screen for social isolation just by asking a couple of questions. We can identify isolated patients by asking simple, concrete questions such as “Who do you have to talk to about your surgery?” Or “Is there someone to take care of you when you go home?” Just two or three basic questions can make a difference. Also, practical, care-based questions are less likely to be threatening for a patient.  Instead of starting with psychological issues (“Are you feeling lonely?”) we can ask, “Is someone coming by to see you today?”

And once we have identified a patient who lacks social support, we can make a referral to a social worker, chaplain or hospital volunteer. They are a crucial part of the team. Healthcare has become so complex, it’s better to deliver care in a team-based setting, especially for a patient who has no one to rely on. Though we as doctors can play a vital role in identifying socially isolated patients, we need to alert our team so these patients get connected to the best services that meet their needs.

What you said makes so much sense. It does seem natural that a doctor would ask questions about who is caring for you—who is there for you. And further, I’m wondering this:  If your doctor is genuinely concerned that you don’t have anyone there for you, could these questions encourage you to talk openly about your lack of support?

Dhruv Khullar:  Yes, I believe asking simple, care-based questions can make it easier for patients to have an honest conversation about their need for more support. And this conversation could alleviate some of the shame and distress about being alone without support. Conversations, even brief talks with doctors, have a way of normalizing what has felt uniquely embarrassing or shameful. A patient might not feel so alone when their doctor emphasizes that social isolation is a common problem.

You got me thinking about the stigma in our society that makes it so difficult to speak up if we lack social support, and are truly alone. We don’t want to appear “needy.” What do we do if we really don’t have people to turn to when we must have surgery, or find ourselves seriously ill? Isn’t talking about being alone and needing help a hard conversation to have?

Dhruv Khullar: Conversations can start with a doctor or healthcare provider, even if we are too ashamed to discuss our lack of support with someone else. Once the conversation has started, patients may be able to face their need for support with less shame and more action. Once again, care-based, concrete questions can help us speak openly, and begin planning our care, including making referrals for the support that is needed.

We need to have more conversations about social isolation. The more candid the better. Hopefully we will find the courage to ask, “Will you be there for me?” And we will keep talking until we know who we can count on.

Besides making referrals to hospital social workers, chaplains or volunteers, is there a particular resource that you find helpful when you identify a socially isolated patient?

Dhruv Khullar:  I highly recommend the Health Leads program. This service is available in many hospitals in Massachusetts and other areas of the country. It can help connect patients to services they need, with links to community resources.  I use it very often.

When interacting with a patient who is alone and lacking support, what do you say or do to put them at ease?

Dhruv Khullar:  In the busyness of the hospital what sometimes gets lost is the human connection. One patient I remember was dying alone, without any loved ones around. At those times, it’s important just to listen. So I listened to whatever he wanted to talk about. Being present was as valuable as anything else I could do.

In my experience, even in just a few minutes, there are moments for deep connection. If we make the time, we can deeply and honestly communicate about what’s most important.

I’m really moved by your words. Thank you so very much for your generosity and insight, Dr. Khullar. And I’m so grateful that you’re encouraging people to talk more about this problem of social isolation. You have validated for me just how vital it is to have honest, realistic conversations when we need to ask others to help us.

Dhruv Khullar:  Thank you, it was a pleasure to talk with you today.

Resources

More about Dhruv Khullar

Health Leads Program

AARP Study on Isolation: Framework for Isolation in Adults over 50

Dhruv Khullar, M.D., M.P.P. is a resident physician at the Massachusetts General Hospital with interests in health policy, economics, and journalism. He is a contributor at the New York Times and writes regularly for both mainstream and academic publications, exploring evolving trends in medicine and health care. He recently worked at the ABC News Medical Unit, where he helped curate and communicate health information, and was previously at the White House Office of Management and Budget (OMB), focusing on Affordable Care Act implementation.

Khullar graduated with honors from Yale University (B.A. in Biology), and earned his medical degree (M.D.) at the Yale School of Medicine. He also received a Masters in Public Policy (M.P.P.) from the Harvard Kennedy School, where he was a fellow at the Center for Public Leadership. His work has appeared in the New England Journal of Medicine, Journal of the American Medical Association (JAMA), New York Times, Washington Post, Wall Street Journal, USA Today, The Atlantic, Slate, Politico, and Scientific American. He was recently recognized by LinkedIn as one of the Top 10 Healthcare Professionals Under 35.

val.png

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Her next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March 2020 by Central Recovery Press.

Keep up with Val at www.HearteningResources.com