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

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

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.

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.

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.

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/.

Want a glimpse of what opioid addiction really looks like?

Meet Vinnie: a self-described “regular” guy from Revere, Mass., and a recovering drug addict.

Toothless, and 60, Vinnie was prescribed opioids — Oxycodone, Oxycontin, Dilaudid, among others — for a chronic pain condition. Though he says he never intended to abuse these medications, Vinnie became an addict, taking painkillers for 28 years as his doctors kept prescribing higher and higher doses to manage his pain. Listen to his story here:

Vinnie stopped caring about anything except opioids, and finding his next dose of medication.

His marriage fell apart. He missed opportunities to spend time with his only daughter as she grew up. He became estranged from friends. He stopped taking care of his body and lost his teeth, gained 100 pounds, and developed diabetes, heart disease and arthritis. He fundamentally lost his will to live and contemplated suicide.

Ultimately, it was a pharmacist who put a stop to Vinnie’s opioid use by refusing to fill his prescription. After his initial panic, this abrupt end to the drugs led Vinnie to connect to a new doctor, an addiction specialist. His new regimen included a slow tapering of the narcotics and the initiation of Suboxone therapy.

The state and nation are in the midst of an escalating opioid crisis — it’s estimated that 67 Americans died each day from opioid overdoses in 2013, and the number of deaths from drug overdoses was three times that of the combined deaths from car accidents and homicides in that same year.

Just this week Massachusetts Gov. Charlie Baker enlisted medical schools to provide more addiction-related training to medical students. Against this backdrop, Vinnie’s story shows the harsh reality of addiction as well as a path to recovery.

How to fix it? It’s clear that a multifaceted approach is needed, as outlined in an extensive report put out by Gov. Baker’s Opioid Working Group in June.

One element, relevant to Vinnie, is consideration of one of several medications available to treat opioid addiction, including methadone, buprenorphine and naltrexone. Currently, these medications are underused, partly because they are controversial.

Access can be tough, as the majority of treatment centers don’t provide such medications, and many insurers don’t cover them or have strict rules on how and for how long they can be prescribed.

Suboxone, the drug Vinnie takes, is a combination of buprenorphine and naltrexone, a partial opioid agonist to reduce drug cravings and an opioid antagonist added in small amounts in an effort to prevent abuse. This medicine is much easier to get than methadone (patients can take it home instead of having to go to a clinic every day), and it can be used both for medically supervised opioid withdrawal and for long-term maintenance therapy.

So, what’s the controversy? Some argue that use of Suboxone (and methadone) is just replacing one addiction for another. It is still an opiate-like compound, and one that is habit-forming.

In addition, Suboxone has street value. It has become increasingly popular among addicts as a means of curbing opiate withdrawal symptoms, bridging the gap until opioids can be obtained, and perhaps, because there is a market for it, providing an income source to allow for the purchase of more illicit drugs.

Does this mean we shouldn’t use the medication? Data clearly show that medications like Suboxone and methadone are saving lives, decreasing the spread of infectious diseases, decreasing criminal behavior and improving social functioning among addicts. And Vinnie’s story certainly argues in favor of Suboxone. As he says: It gave him back his life.

Originally published on WBUR CommonHealth Blog on September 4th, 2015.

Resources:

http://www.mayoclinic.org/diseases-conditions/prescription-drug-abuse/basics/definition/con-20032471

http://www.mayoclinic.org/diseases-conditions/drug-addiction/basics/definition/con-20020970

http://www.recovery.org/topics/find-reputable-opioid-and-opiate-recovery-hotline/

http://www.addiction-treatment.com/find/opiate/hazelton-nd/

http://www.mass.gov/eohhs/images/dph/stop-addiction/recommendations-of-the-governors-opioid-working-group.pdf

When Natalie was in college, the ramifications of her eating disorder reached their pinnacle when she landed in the cardiac intensive care unit. Her heart was in severe distress due to the toll that restriction and over-exercising had taken on her body. Though previously she had minimized, rationalized, and outright denied having an eating disorder, immediate attention became mandatory.

After stabilizing in an inpatient unit, Natalie sought residential care at Monte Nido Vista because she has been exposed to Carolyn Costin’s views on recovery from the book 8 Keys to Recovery from an Eating Disorder.

Natalie stayed at Vista from July through September 2014. Transitioning back into life in Chicago proved harder than she anticipated. While Monte Nido believes that everyone can become fully recovered and live a life free of an eating disorder, Natalie’s step-down treatment program in Chicago promoted the more limiting model that eating disorder symptoms can only ever be managed, never fully alleviated.

Nearly one year later, Natalie considers the tricky relationship between her depression, anxiety, and eating disorder, and admits that although she is sometimes inclined to isolate, it never serves her recovery. She reflects on what is gained by being vulnerable, and how much better she feels when she speaks her truth, without judgment. She knows she needs to be vigilantly honest with the people in her life, and to nurture the relationships that are healthy and to let go of those that aren’t. Despite the bumps of recovery, Natalie reminds herself: “I am capable” – truly, we all are.

Currently 23-years-old, Natalie lives in Chicago and is completing her last semester at college, pursuing a bachelor’s in nutrition and dietetics.

Emily’s eating disorder developed when she was just 14, shortly after she left home to attend boarding school, when her parents were getting divorced. She talks about the difficulty she had – and sometimes still has – in speaking and claiming the word “bulimia”. She reflects on how her eating disorder was not born from body hatred, but rather a plethora of painful emotions seething inside her.

For years, Emily’s eating disorder was her hidden identity, active to varying degrees but always present. She was convinced it would always be a part of her life. But finally, when she was 28, her family confronted her and revealed that they knew about it. Emily allowed them to serve as her initial motivation to begin recovery. 

When she first entered treatment, Emily struggled to even find the words to articulate her feelings, thoughts, and behaviors. But as she began to crumble in the safety of treatment, she also began to blossom.

Now 32, Emily resides in San Diego, California where she devotes herself to mothering her 20-month-old daughter, Winnie. She shares her aspirations for Winnie, and the values born from her experiences in recovery that steer her parenting decisions. And she speaks about how being a mom has bolstered her along the path of recovery, and celebrates how far she has come.

On July 7, 2014, Kelly arrived at Monte Nido Vista. On July 7, 2015, she celebrated her first year in recovery. When we spoke just before her anniversary, she marveled at everything being in recovery has afforded her.

Originally from New Jersey, Kelly stayed in California after finishing residential treatment in order to complete her college degree at Pepperdine University, where she is now a senior.

Kelly developed anorexia when she was just thirteen years old. She spent the following nine years cycling in and out of eating disorder treatment, trying to manage her primary behaviors of restriction and over-exercising. Told by her doctors that she would never fully recover, Kelly became intensely focused on maintaining her identity as a person with an eating disorder, which provided her with a meaning and a purpose. She excelled at her eating disorder. Furthermore, the treatment centers felt like safe havens, retreats from the challenges and uncertainties in life. But eventually Kelly’s behaviors took too great a toll: her body, her mind, her spirit, and her family needed to be freed from the depleting cycle.

In her story, Kelly speaks about the impossible desire to have just a “little bit” of an eating disorder, shares the challenges she has encountered in trying to strike a balance between recovery work and social life, and identifies what keeps her committed to recovery when the road gets bumpy. She acknowledges that recovery is a long process, but she harbors the essential faith that becoming fully recovered one day is absolutely possible."

When she was a teenager, Kristie began competitive weightlifting. The sport proved to cultivate a culture of restricting and binging, and she soon developed an eating disorder. Over the years, she cycled through various behaviors, including compulsively exercising, restricting, binging, and purging.

Kristie – like so many of us – was told her disorder was chronic, that “recovery” meant maintaining her eating disorder, not overcoming it. But she wasn’t willing to settle for this prognosis. So she sought out treatment options in the Northern Hemisphere, found Monte Nido, and embarked upon her path towards recovered.

Kristie speaks candidly about the challenges of recovery: there is no clear way it is supposed to look; sometimes it is necessary to follow a meal plan, but the goal is to move towards intuitive eating; she had to acquire basic life skills that the eating disorder prevented her from learning previously; her eating disordered mentality also manifested in finances and relationships; and the differences in motivation to start recovery versus to continue in recovery.

Now two years into committed recovery, Kristie serves as a mentor for those earlier on in the journey through a global eating disorder recovery peer support program called MentorConnect. She describes the unique recovery team that she had to create herself, as professional eating disorder recovery resources are greatly lacking in the Southern Hemisphere.

Kristie expresses her perspectives that hope is the “first and crucial” element in recovery, and how important it is to revolt against cultural messages that encourage body-hatred. Her story and her dedication call us all to join her in manifesting a body-positive, hope-filled society.

Born in England to New Zealand parents, Kristie grew up in Australia, but has been living in New Zealand for five years now where she currently works for Outward Bound.

Megan, a 23-year-old New Jersey native currently residing in California and pursuing a master’s degree in global public health, arrived at Monte Nido Vista on June 5, 2014. This interview took place in June 2015 during the week of her one-year anniversary.

Once consumed with restriction and compulsive over-exercising, Megan admits that currently she struggles with orthorexia, a condition where one obsesses about eating “healthy” foods. But she has moved past her former life of dissatisfaction with herself, by stepping out of life and into treatment, where she did major self-assessment. She found her “Soul Self” – also referred to as “Healthy Self” at Monte Nido.

Megan speaks about the imperative of connecting with people, especially those who are in recovery or have recovered. She reflects on the impact both her eating disorder and her recovery have had on her family. And finally, she shares the tools, motivations, and goals that help her stick with recovery.

Anna left her home in Burlington, Vermont to begin treatment at Monte Nido Vista on April 28, 2014. More than one year into recovery at the time of the interview, 25-year-old Anna is living in Denver, Colorado and pursuing a nursing degree.

Anna is admirably candid about the challenges of recovery. Six years into her eating disorder – which involved cycles of purging, binging, over-exercising, and restricting – it became clear that she needed more intensive support than just an outpatient team in order to break the patterns. The four months Anna spent in residential treatment and then a transitional living house in California were transformative, but life back in the real world proved surprisingly difficult.

Anna admits her eating disorder still tempts her and occasionally catches her off guard with unexpected triggers. In addition to support from her boyfriend Thomas, her parents, and the recovered therapist she works with, Anna possesses an impressive self-awareness and “Healthy Self” mentality that she honed in treatment. She discusses how she challenges cultural misnomers about what “healthy” means, and the benefits of life in recovery: deeper intimacy and presence in relationships, a burgeoning sense of spirituality, and growing motivation to heal in order to help others. Though it has been rocky at times, Anna is proud of and committed to her recovery.

Listen to more stories in the Eating Disorder Recovery series here.

In the two years since the Boston Marathon bombings of 2013, we have seen many amazing examples of human resiliency. We have seen the people of Boston rise up and bond together over this shared trauma, with Boston Strong our motto. And we have seen families and individuals move forward with courage in the face of loss. Powerful news media images of amputees learning to walk on their new prostheses are emblazoned in our minds.

Quieter, less visible personal transformations have also occurred in many who were not physically injured by the bombs. Jennifer, a 42 years old woman who has suffered from depression for years and who was volunteering at the Boston Marathon Finish Line in 2013, describes the events of that day as “a turning point” in her life.

In Jennifer’s words, “Since the marathon, everyday is a gift.” She realizes how lucky she is to have walked away that day without any injuries, alive. Moreover, the events of that day, which for Jennifer included helping a runner reunite with his family in the aftermath of the explosions, changed her life goals. She now feels it is her responsibility to do something to help others and is committed to finding concrete ways to do so.

In what Jennifer describes as “an amazing coincidence”, she was signed up to participate in a Relaxation Response program at the Henry-Benson Institute of Mind-Body Medicine at Massachusetts General Hospital the week following the marathon bombings. Primed by her marathon experience, she devoured what the course had to offer. The teachings not only deepened her sense of self-acceptance and gave her skills to manage her own depression, but also strengthened her resolve to help others, and she ultimately went on to become a peer counselor for subsequent groups.

The central message she came away with is that while we cannot necessarily control what happens to us in life, we can control the meaning we make out of our experiences. She is determined to make the events of April 15, 2013 mean something, and to translate this meaning into action. As far as her depression is concerned, she has come around to recognizing “some of the good things about depression”, namely her appreciation for the small things in life, and her increased sense of empathy for others. “It’s like any other illness”, she says. “It doesn’t have to limit you. It’s all about making it mean something.”

I have so much to be thankful for. I should NOT feel so horrible. But, I did feel horrible. Lost. Lonely. Exhausted. Often. I was a sophomore in college. 18 years old.

I had spent several nights crying, not knowing how to get rid of the dull ache I felt inside of me. Now I was on my way to an intake session at the University Counseling Center, at the suggestion of my best friend. I had tried my best to hide my sadness, but having struggled herself, she saw right through me. I skipped my history class to make this appointment, trading time in a class I enjoyed for an hour that was one of the scariest of my young life. I sat in the corner of a slightly dim room with a box of Kleenex in one hand, sobbing and spilling out my inner emotions to a woman I had never met. After 45 minutes of listening, she suggested regular counseling. An appointment was made for the next day.

I was so terrified that I almost called it off, but I knew I had to be brave, so I showed up the next day and weekly thereafter. It seemed to be helping, but then, after the third week of counseling, one of my closest friends seemed to turn on me without explaining why. He just shut me out. Suddenly. I was mad, confused, and hurt, not sure if I wanted to go on. I cried so much in therapy that afternoon—all I felt was despair. I could only imagine that he stopped being my friend because I was so messed up. Too much of a burden.

I was still the nerdy bookworm I had been in high school, but being at the university had opened my mind to new ideas, people, music, art, and lifestyles. It was exciting but at times overwhelming. I was a perfectionist, not satisfied with any grade lower than an A. As an Honors Program student, I was constantly surrounded by overachievers like me. By the time I entered counseling, I had pushed myself harder academically and emotionally than ever, so hard that I bottomed out. Nothing I did felt good enough. Slowly, over months, my counselor helped me to see and appreciate who I was becoming. Things would be OK, I thought.

Things were OK, at least for the rest of my undergrad years, but anxiety and depression were never too far away. I went on to grad school, still never feeling good enough. As the first in my family to graduate from college and pursue an advanced degree, I constantly compared myself to fellow students who went to better schools and came from families with more wealth and status. I was afraid I would be “found out” as the fraud I assumed I was. Every night, as I tried to go to sleep, my mind would swirl with thoughts of all the things I could have done differently, better, often reliving mistakes made years earlier. I often wished that I would fall asleep and never wake up.

There was also a lot of good happening in my life during graduate school. I fell in love and got married. I had a job that I enjoyed. But still, even when things were going well, I knew that eventually, depression would find me. It felt inevitable.

I was in my late 20s when I first discussed my depression with my primary care physician, and she suggested I try an antidepressant. In my mind, this marked for me the moment of my “official” diagnosis of depression, even though the feelings had been longstanding. Now that I had been labeled with major depression, I had the comfort of a diagnosis and potential treatment, but also a fear that I was now associated with a condition that carried a great deal of stigma. How was this stuff going to change me? Could it really work? Would I need it for the rest of my life? Did needing antidepressants to function mean that I was too weak to deal with problems on my own?

The first two weeks on Wellbutrin were difficult. I felt like someone had turned up the volume in my brain. I had trouble sleeping. Every so often I involuntarily twitched. I was afraid to tell the doctor. What if she took me off of the meds and I lost this opportunity to maybe get better?

And then, about two weeks later, the buzzing in my head stopped. One morning I woke up and everything felt “even,” as I came to describe it. The internal criticism stopped. I could fall asleep and started sleeping a little more soundly. It felt like a miracle.

I finished my Ph.D. two weeks before my thirty-second birthday. Before I knew it, I had been offered what I long described as my dream job, and my husband and I moved to Boston. Everything about every day was new and exciting. I was happier than I thought I had any right to be. I was gliding.

But not for long. Depression continued to haunt me as I spent time in and out of therapy, on and off medications, feeling okay and not okay. My last serious relapse in 2011-2012 was the scariest. I would often cry riding the train to work, wiping the tears from my face, trying not to call attention to myself. When I couldn’t take the pain any longer, I started therapy again, got my meds changed, and again, began to work toward feeling more even-keeled, but it took much longer this time. Sometimes I just wanted to disappear from the earth. I came home one night, curled into a ball on the ceramic tile of my bathroom and behind that closed door shaking and sobbing as quietly as I could so that I would not scare my husband.

Although I was generally quite open about talking to my family members about my depression, more often I felt the need to hide my pain. They did their best to support me and I did not blame them if at times they felt helpless. At the same time, I felt guilty for causing them to worry, broken because I could not seem to get better, and exhausted from living in a world I felt was filled with more pain than I could bear.

In early 2013, I decided I needed to find a new approach to managing my recurring depression. Although my symptoms had subsided thanks to regular therapy and medication, I feared another relapse, and I didn’t want more or different medications. Before moving to New England, I had a regular tai chi practice and was experimenting with mindfulness and meditation, both of which had helped me deal with the stress that tended to trigger depressive episodes. My search for similar experiences and training led me to the Benson Henry Institute for Mind Body Medicine. I signed up for an eight-week session to learn the Relaxation Response that would begin on April 16, 2013.

The day before the program was scheduled to start was a sunny Patriot’s Day morning. I arrived in Boston at the time I would normally have arrived for work, but instead made my way to my volunteer assignment for the Boston Marathon. I had been volunteering at the race since my first year in Boston. As a recreational runner myself, it is a great way to support the running community, and something I am always honored to be part of. This year I would be working at the first water stop after the finish line.

I was ready for a long day on my feet, first turning the caps on the water bottles to make them easier for the runners to open, and then handing them out with a smile and congratulations as runners moved through the stretch along Boylston Street after finishing. I was surprised at how physically beat up many of them looked--some encrusted with sweat or bleeding in spots where they had been chaffed by clothing. Faces winced as legs hobbled slowly forward, a situation I could relate to only too clearly, having finished the Chicago Marathon about six months before. Some runners were in better shape and had the smiles I expected to see. Just being there to help these runners was a very emotional experience for me as I shared with them all the joy and pain of finishing 26.2 miles.

Hours passed. I watched the numbers on the runners’ bibs get higher, indicating that we were getting deeper into the field of over 25,000 participants. My feet and lower back started to hurt from prolonged standing. I remember looking at a clock on a Boylston Street building that read 2:00 pm. My anticipated check out time was still 4 hours away.

At 2:50 pm, as I was looking down Boylston Street toward the finish, I heard an explosion, followed by a plume of smoke, then another explosion. Fireworks, I wondered? The runners continued down the stretch and because I was so used to seeing battered bodies, I could not tell from their faces what had happened. And I was afraid to ask. Then I saw a female runner coming toward us with a look of horror on her face. Soon, the emergency vehicles began screaming down Boylston Street toward the finish, an area that was now a cloud of smoke and blinking lights from emergency vehicles.

In a world where news and information are available almost immediately, there was a void—no one knew what was going on. Speculations and rumors spread. Then, one of the first responders asked us to clear the area. They were looking for a third unexploded bomb. All I remember is a sense of unreality as the scene unfolded around me. I wanted to help but was afraid to help at the same time. No one knew where to go but someone told us to go to the Fairmount Copley Hotel, located on the other side of the Square.

I cut through Copley Square, running behind the big white medical tent to the corner across from Huntington Avenue. The hotel was in lock-down. Emergency personnel was pushing people on stretchers toward waiting ambulances. At 3:20, the first of many text messages started arriving from friends and family, those near and far. Where was I? Was I OK?

A volunteer wearing one of the white jackets designating her as medical staff approached me with a man in a wheelchair, a thin but very fit middle-aged man, with sandy brown hair and a beard. Michael. He was shivering in his thin runner’s singlet and shorts and was desperate to get his gear bag back, which contained warm clothes. The medical staff had been treating him for stress fractures after he crossed the finish line. He did not have a phone – could one of us text his wife to let her know where he was and that he was OK? Then Michael and I were alone. I sent the text “I am with Michael – he is OK – are you OK?” I still don’t know if that message ever made it to her.

I’m not sure how long we waited at that corner across from the medical tent but at some point, I decided I needed to do something, to take action and make sure that Michael reconnected with his family. I decided to wheel him to the family meeting area and try to find his gear bag so he would have some warm clothes and his cell phone.

For such a lean runner, he was much harder to push than I expected. As we came to the end of the block, there was a rough spot in the curb cut. I hit it with a thud, knocking Michael forward and practically out of the chair. He reacted with an expression of pain. Until then I had managed to keep my emotions in check, for the most part, but now I started to cry and my hands began to shake. “I am so sorry,” I told him, and I was. All of a sudden, I realized where I was, what had happened, and what I was doing ...

Now Michael comforted me. I needed to take my mind off of what was immediately happening, so I asked Michael to describe his wife to me. “She has brown hair. She’s beautiful, and she should be wearing a brown coat,” he said. We got to the family meeting area but she was not there. My heart sank. I told Michael I would not leave him until he was back with his family.

In the meantime, I would retrieve his gear bag. Amazingly, not only did I find the school bus that had brought his bag back to Boston but the volunteers actually gave it to me to take to him. I returned to the meeting area and was overjoyed to find Michael’s wife standing next to him. When he saw me carrying his bag, Michael exclaimed, “My angel!” His wife and I needed no words of greeting as we reached out to one another to hug, sobbing with relief, for what seemed like a long time.

When I was certain that there was no more I could do to help Michael and his wife, we said goodbye.

I wandered from Back Bay to my office on Cambridge Street in a state of shock, stopping regularly to respond to a steady flow of text messages coming from friends, family, and coworkers. As I opened the door at my workplace and saw one of my coworkers at reception, I let out a series of sobs that shook me to the core. Everyone who was in the building at the time came down to the lobby to see me, hug me. I called my husband. My supervisor drove me home. All I could do was crawl into bed.

Not surprisingly, the Benson Henry program did not start the next day as scheduled. There was too much uncertainty about travel in the city. The people responsible for the bombing were still at large. By the time the program started, one week later, I had spent seven days feeling completely numb, going through the motions of life. I can hardly remember it. But I still remember the first guided meditation in the program clearly, a body scan, and how good it felt to finally find some brief moments of peace in my own body. The next seven weeks brought more meditation experiences, opportunities to share the impact of these practices with the group and to listen to the stories of others who had sought this program for a whole variety of reasons. The most valuable part of the program for me was learning to recognize cognitive distortion and negative automatic thoughts and to reframe them in positive and constructive ways. The many years of “should,” statements, all-or-nothing thinking, perfectionism, and other unproductive ways of thinking, slowly dissipated.

I was extremely sad when the program ended, so I was thrilled when the group leader asked if I would consider helping the next group as a peer counselor. Participating in the program again, in a different role, was perhaps even more enlightening for me. Now that I wasn’t focusing as much on myself, I was able to see how profoundly these practices impacted others. In addition to learning how to meditate, I was also motivated to restart my tai chi practice, and eventually, pursue a teacher training program at a local studio.

My relationship with depression began to change. As part of the Benson Henry program, we talked often about gratitude and making meaning. I had always been careful not to take things for granted, but after the Marathon Bombing, every day felt like a gift. I had walked away from the scene with my life and my limbs when others were not so fortunate. I was determined to find some way to bring some good out of this tragic event. If that day was going to change my life, it was going to change it in the very best way possible.

For the first time in my life, depression was not a hurdle to overcome, but part of me that I needed to accept, for better or worse. By acknowledging it and realizing how much the associated pain contributed to my capacity for kindness and empathy, I have been able to better cope with the occasional “funks,” none of which have escalated into the relapses I previously experienced. Feeling gratitude is key to helping me understand and accept depression as part of what makes me the unique person that I am.

I began longing for new and meaningful challenges, opportunities to further explore and understand my own health and wellbeing, and the chance to improve the lives of others.

I had a nearly 20-year career as a historian behind me and was our household’s primary wage earner. The decision to go back to school to study nutrition and public health was both the easiest and most difficult decision I have ever made. But I had to do something.

I often thought about Michael. At first, I had been so afraid to take charge of the situation, but I did. I met that fear and it changed me. I made a difference. I could do it again.

In May I will graduate from Tufts University with a dual degree in nutrition communication and public health. I have been befriended and supported by a community of scholars and researchers who have given me extraordinary opportunities to learn and grow. I am excited to see what comes next. I am truly blessed.

I have SO much to be thankful for. And I feel wonderful.

Originally published on WBUR CommonHealth Blog, April 20, 2015

Resources:

http://www.nimh.nih.gov/health/topics/depression/index.shtml

http://www.mayoclinic.org/diseases-conditions/depression/basics/definition/con-20032977

http://www.aacap.org/AACAP/Families_and_Youth/Resource_Centers/Depression_Resource_Center/Home.aspx

By Annie Robinson

If you were told you only had 8-10 months left to live, how would you spend that time?

Paul Giese was diagnosed with acute myeloid leukemia (A.M.L.) in January 2013, at age 75. He was told he had 8-10 months to live. 22 months later, on November 25, 2014, he shared the story of his remarkable journey beating the odds.

With his devoted wife Lucretia by his side, Paul endured months of chemotherapy, experimental drugs, and the trying search for a bone marrow transplant match. He navigated uncertainty, bore physical deterioration, and tolerated disappointments. He also rejoiced in the connections he shared with others, and truly made the most out of the time he had.

Paul passed away on January 14, 2015.

Resources:

To learn more about A.M.L., visit the Leukemia & Lymphoma Society’s website. They also offer information aboutsupport groups for patients and their families.

The New Yorker published an article on advances in treatment for A.M.L. this past September, 2014.

In Evelyn Berde’s words, “I have always felt that art has the ability to lift us out of one place and take us to another.”

Evelyn is an artist, a teacher, a healer, and a patient herself. Born with congenital scoliosis in 1950, she spent many years in and out of Massachusetts General Hospital (MGH), confined to her bed for months at a time. Her art is informed by her experience living with a “deformity”, as it was referred to in those times, as well as by her childhood growing up in the old “West End” of Boston, a low-income but culturally rich neighborhood close to MGH and the Charles River which was razed in the late 1950s, displacing many residents, and replaced by residential high rises which still stand today.

Evelyn’s childhood was marked by sadness—alcoholism in her family, the loss of her nine year old brother when she was six, not to mention her own medical condition—but it was also full of beauty, love and color. Her artwork portrays this complexity and texture.

Today, she is a wife, mother to two grown children, an art teacher and therapist as well as an extraordinary storyteller. She weaves her life stories into her art with skill and grace, and she reminds us all that we have the power within us to transform our experiences. “It’s all in you”, she says. “It’s hard to do, and it takes energy, but if you can focus on something that will bring you joy, even in the midst of tremendous sorrow and pain, it can shift everything.” 

You can listen to Evelyn talk about more of her paintings, and view the original publication of this piece on WBUR’s Commonhealth Blog here.

Sara and Kerry met as students at Bates College in 2001. They were together for eight years, and planned to get married in August 2010. Last June, just two months before the wedding, Kerry committed suicide using a gun he purchased legally that same day. He was 27 years old. This was a complete surprise to everyone who knew him, and obviously devastating.

At the time, both Sara and Kerry were in graduate school in the Northwest: Sara was in Seattle, Washington, getting a Ph.D. in Molecular Biology, and Kerry was in Eugene, Oregon attending law school and pursuing a concurrent masters degree in conflict and dispute resolution. They completed their studies late last spring, full of energy, ambition and promise, and were planning to move back east before the wedding, for their careers and to be closer to Sara’s family in Maine. For Kerry, the move never happened.

Kerry had been plagued by chronic pain in his arms, back, and legs for over a year. As a student, he did not have cohesive medical care, which meant he saw multiple providers and had to tell his story over and over again. The cause of Kerry’s pain was never determined. None of his physicians had followed him over time, and none knew him well as a result. Kerry was not one to complain about pain, and indeed, until he developed these debilitating conditions, he had been an athlete in excellent physical health. At times, given the lack of a clear diagnosis, he felt that the legitimacy of his pain was called into question. Ultimately, he was left with a sense of desperation and hopelessness.

Suicide is a major public health problem. According to 2007 data, it is the 11th leading cause of death overall and 4th leading cause of death for adults 18 to 65 in the United States. Everyday, approximately 90 Americans commit suicide.

What can be done to prevent suicides like Kerry’s? Recently, Sara and Kerry’s father, Dr. Mike Lewiecki, addressed this issue in an article, “Time to Reconsider,” published last month in The Journal of the American Medical Association.

Here, Sara (who is now a post-doctoral fellow in molecular biology at Massachusetts General Hospital) speaks openly about her experience of Kerry’s suicide, and about trying to move forward in the face of such a tragic loss.

Originally published on WBUR Commonhealth Blog, April 28, 2011

Resources:

For information about suicide, visit

http://www.mayoclinic.com/health/suicide/DS01062

http://www.cdc.gov/ViolencePrevention/suicide/

To learn more about suicide prevention and treatments after suicide attempts, visit

http://www.afsp.org/preventing-suicide/treatment

For support after someone you know died by suicide, visit

http://www.supportaftersuicide.org.au/what-to-do/information-for-friends-and-family

1-800-273- 8255 is the 24-hour National Suicide Prevention Lifeline in the United States that is ready to answer calls from anyone in a suicidal or emotional crisis and provide counseling and referrals. For this service in Spanish, call 1-888-628-9454.

http://www.suicidepreventionlifeline.org/

All of our Healing Story Sessions are videotaped, and some of our participants have courageously agreed to have their videos shared on our website. Here, you can watch Marie share her story of living with Stage 4 Colorectal Cancer. Marie participated in our first Healing Story Session in March, 2014. Her story is humbling, moving, and funny. She has amazing perspective, wisdom and a terrific sense of humor. It is worth a watch!

Essay by Marie Pechet:

As mother to two young boys who love to watch movies, certain lyrics tend to run through my head, like Chitty Chitty Bang Bang we love you! or You’ve got a friend in me…. from Toy Story.

Since my most recent cancer diagnosis, the lyrics that stick in my mind are from Frosty the Snowman:

Frosty the Snowman
Knew the sun was hot that day
But he said let’s run and we’ll have some fun
Now, before I melt away….

I was initially diagnosed with colorectal cancer when my sons were 1 and 4 years old. At that time, we put our lives on hold for an entire school year while I had surgery to remove part of my colon followed by chemotherapy to kill any remaining cancer cells. Our lives revolved around my healing, and any treatment that might make me well again — like acupuncture or sleep — took priority. While I missed doing many activities with the kids, my husband and I decided that the trade-off would be worth it in the long run.

After nine months, I completed chemotherapy. There was no sign of cancer, and I returned to living my life.

Like many people, being diagnosed with cancer shifted my view on what was important, and I swore that I would never again take life for granted. But one of the beautiful things about living life as a healthy person is that you do get to take it for granted. So, as I returned to health, I also returned to doing all the things that I swore I would never do again. I became easily annoyed with other drivers, got impatient with the kids, juggled too many commitments, and spent time doing things out of obligation rather than joy. Still, this made life feel comfortable and normal, and there seemed to be security in that.

Of course, security is an illusion, and almost a year later, we saw the first signs that the cancer had returned.

Like a lot of bad news, it was delivered over the phone. Though the doctor primarily called to have me repeat a blood test, the request gave me an ominous feel in the pit of my stomach.

I hung up the phone and sat in the kitchen, looking out the window at my boys, now almost three and six years old, playing in the backyard. It was a warm spring day in late May, they were running and laughing, and I realized that, more than anything, I wanted their life to continue that way.

I also realized that I wanted a planter on our back deck, and now seemed like as good a time as any to get it.

I called the boys– we were going on an adventure! They were excited and we drove to the best plant store I knew. I wandered around the enormous planters while the boys amused themselves playing in the water fountains. At first, I tried to keep them out of the fountains, but the sales folks didn’t seem to mind, so I let it go.

By the time I made my purchases, the laughter was bubbling out of their bodies and water was dripping from their clothes. As we got everything into the car, the boys stripped down for a naked ride home and the saleswoman commented that I was the calmest mother she’s ever met. We had a truly beautiful day in spite of the news, and I remember that triumph every time I look at that planter.

The rest of our summer and fall days were filled with ultrasounds, blood tests and surgeries. I had one 2½ hour surgery to remove and rebuild my entire rectal area, followed a few months later by a 7½ hour surgery to remove it all again. This surgery included a full hysterectomy to remove a large tumor growing on an ovary and touching every other abdominal body part, and the surgeon removed parts of the fat in my abdomen where there was evidence of more tumor growth.

Doctors at MGH and at Sloan Kettering told me that both the surgery and the chemotherapy regimen would need go 100% to have a chance of long-term survival. In the last surgery, there was tumor left behind, and we learned that cancer cells were in my abdominal fluid. So we had more work to do.

Only three weeks after that surgery, I started a regimen of chemotherapy every other week. This requires a full day at the hospital having an infusion. Then I go home carrying a continuous infusion pump attached to my chest for two days. The pump comes in a black bag containing chemotherapy; an IV line runs from the bag to a port-a-cath in my chest. Not only does the chemotherapy taste awful and remind me that I am a cancer patient, but it affects how I sleep as I try to keep the line from tangling, and how I shower, because I can’t get the apparatus wet. The kids know that they need to be careful around my body, and I worry that they are less spontaneous with their affection as a result.

I wish I could count down to the end of the treatments, but the doctors soberly recommended no end date.

Though I am trying every complementary treatment I can to get off chemo, it sounded like this would be our way of life for the foreseeable future. I knew that I couldn’t put my life on hold to heal; this IS my life.

It took a few weeks for me to accept this hated reality and the scariness of an uncertain future. I wanted to put the whole package back on the shelf and select a different path for myself and my family.

Slowly, the reality settled in and, while I still resisted it, I gradually tried to view it as a gift. I had time, I was able to be home and not in the hospital, and, other than cancer, I was in good shape physically and had a life I mostly loved. I started to look outside myself. I couldn’t imagine what this experience would be like for my sons. What could I do to help them navigate terrain that few adults are equipped to manage?

Determined to provide my boys with joy and laughter and – if my health took a bad turn, with happy memories of us all together — I started my mission to “have some fun.”

This is easier said than done, of course, particularly when the feeling of illness can permeate your life and be part of your household and psyche.

One night, I vomited every few minutes for six hours (even though I had taken the anti-nausea drugs that day). My husband was out of town, and my mother was staying with us. I couldn’t stop long enough to get her help, and she couldn’t hear me call her. Eventually, my three-year-old son woke up and found me in the bathroom. It makes me both proud and sad that he calmly walked to find his grandmother to help with the situation.

It’s hard to think about “fun” when I must unexpectedly miss a school assembly I hoped to attend or a movie that we all planned to see together. It is now a way of life that the kids accept, but saddens me as I watch them go off without me. As I see them walk away, I wonder if this is what their future will look like, and whether I will get to be part of it.

So, how could we have fun in the midst of all this? How could we have a household that is not permeated by illness, but is instead light and joyful?

Between all the cancer treatments, I was lucky enough to have a series of good days and we ran with them. In a one-month period we took the Polar Express Ride in New Hampshire, celebrated Christmas with extended family in Pittsburgh, went skiing for a week in Stowe, VT, and took a long weekend trip to Disney World. My husband and I traveled to New York (to see doctors at Sloan Kettering) and managed to make that into a mini-vacation with a shopping trip to Bloomingdale’s and a delicious Indian dinner.

In my quest to make the most of my time with the boys, I can push us all too far. In my son’s first-grade classroom, they tapped trees for maple syrup and processed it. Given his excitement about this, I decided that we would go maple sugaring one weekend. I packed the kids into the car and drove 40 minutes to take an hour-long tour, followed by hot dogs. At the end of the adventure, my six-year-old told me, “That wasn’t worth the long drive, Mom. We learned all that at school already, and the hot dogs weren’t very good.”

So I am learning to balance these trips with doing simple, everyday things, like riding bikes, playing restaurant and hunting for rabbits in our back yard. It is hard to know what would be memorable, and how to make the most of every day. I still have moments, even days, when I am not up to activity or even conversation. At those times, I try to remind myself that tomorrow might be worse, and that will make today look like a good day. So I’d better get up and repeat my mantra, the simple lyrics from Frosty the Snowman: We’ll have some fun now…

Originally published on WBUR Commonhealth Blog April 13, 2010

Resources:

To learn more about colorectal cancer, visit

http://www.mayoclinic.com/health/colon-cancer/DS00035

To find information and support resources for patients and families, visit

http://www.ccalliance.org/patients/index.html

http://www.cancer.org/cancer/colonandrectumcancer/

Last week, I interviewed Sarah Baker, a Cambridge based writer, mother and independent radio producer, about her recent article, “Unraveling My Childhood Asthma: Did motherhood Cure it?”, published on WBUR’s Commonhealth Blog on May 9, 2014. I was drawn to this article because it so beautifully portrays the complex process of integrating illness and loss into one’s life, and how writing can be a part of this.

As Sarah puts it, writing this piece was like bringing her interior world and her exterior world together in public, perhaps for the first time, and this was a powerful experience.

Read Sarah’s piece, and listen to the audio recording of the interview. Sarah is eloquent, honest and brave. She has lessons to teach all of us.

Stay tuned for her memoir!

Listen to audio here:

Photo credit: Susan Lapides

Transcript of Dr. Annie Brewster's interview with Sarah Baker:

Dr. Annie Brewster: So I'm here today with Sarah Baker, freelance writer, mother and a independent radio producer. I wanted to talk with her about an article that she recently wrote called "Unraveling My Childhood Asthma: Did Motherhood Cure it?" which was published on WBUR's Commonhealth Blog on May 9th. I love this article and I think it really is right along the lines of what Health Story Collaborative is about; trying to harness the healing power of stories, so I wanted to talk to you about the process of writing it and what came out of it. I guess as a first question, I was really struck in reading it by all the different roles that asthma played in your life. It set you apart, it called attention to you in life when you might not have otherwise gotten attention, it brought out "sassy pants" which I loved and it was also a constant in your life in the midst of what was otherwise chaotic. So it served many roles, both positive and negative, it seems. I'm wondering if you can speak to that and the different roles that it played in your life.

Sarah Baker: I agree with everything you just said. I was a kid who went through a lot of trauma early and my body responded in a way that maybe my brain didn't know how to. I couldn't breathe. I think my asthma was a reaction to the stress. My mother had died, we moved all the time, and I lived with all of these different families. That is very stressful. Maybe not being able to say out loud, "I hate this" or whatever my feelings might have been. I wheezed and that was where my stress went, to my asthma. I read Joan Didion's essay, "In Bed," about her struggling with migraines and it made me think about my asthma and I started to write the piece. It was through writing that I began to notice how my asthma had been a constant in my life, how it had been representative of the stress. This is somewhat new to me--where I've thought about my asthma from this perspective, as a forty-six year old. As a child I was just trying to survive.

Annie Brewster: I'm really interested in what you said about that you never really consciously thought about this until you started to write about it. I'm really fascinated with the process of storytelling and how that sort of helps move somebody from one place or another. So, can you speak to the process that you went through in writing this and how that helped you and what it meant then to put it out there in a public way and get feedback on it; what that was like for you and what did it take to get to a place where you felt ready to take that on as a writing project?

Sarah Baker: I remember a number of years ago when I started writing, a friend of mine who is a successful writer said, "write what's raw" so I always try to write what hits a chord in my heart. So writing about my childhood and writing about my mother's death is what I tend to write about. This was the first time I wrote about my asthma and it was hard to write about it because I don't have a lot of memory. I had to interview my Dad, I had to do some research, and I had to relive the trauma. I just kept working at [the story] and sometimes felt a little sick after writing but I just kept working. I usually write ten drafts before I show it to any one. I showed it to my husband and he reacted positively. I showed it to a class that I was in and to my teacher and they responded positively. I thought maybe I've struck something here. Then the story sat in my computer for a year; it did. And it was after I started taking a class about the book I'm working on that I decided to send it out. Maybe the year allowed it to percolate so it didn't feel as scary. Once it was out there, the feedback was great. People came out of the woodwork. People that knew me as a kid, that knew me when I had a collapsed lung or people who knew me as a kid who didn't know any of this. They were all very moved by the piece. That was very powerful. My mother-in-law said, "It’s like you've come out"...my interior world had been different from my exterior world; people might see me as this successful or...successful is the wrong word but kind of, um...what is the word I'm looking for?

Annie Brewster: Together…

Sarah Baker: Together... you know, with a lovely house and a great husband and wonderful children and all of that; I have a wonderful life but I had this crazy history that people didn't know about so all of a sudden they know this side of me. That has been really powerful.

Annie Brewster: How come people didn't know about that part of you? What kept you from sharing it before this essay?

Sarah Baker: Well, I think that people at the time knew about it because they could see me being sick but then I think I just put everything, all of these pieces of me, on the back burner and I just kept moving forward, trying to almost erase the past. I think that is probably what happened.

Annie Brewster: Do you feel like there was ever any shame in it?

Sarah Baker: That is a really interesting question. I don't know. Maybe it felt like a weakness or something that I had to put aside? I never even brought it up. I didn't even think about my asthma really until I was writing this piece, thirteen years after my asthma went away. It's only now that I'm beginning to think about my relationship to my asthma and why I might not have talked about it for all of those years. I don't know.

Annie Brewster: It's always a really slow process that we don't necessarily know that is going on or sort of coming into a place where you're ready to write about it or integrate it into your life but, can you name sort of what might have changed in you that made you feel like "alright, I'm ready to write about it"? Or was it all unconscious?

Sarah Baker: The Joan Didion piece gave me permission. I thought, "she wrote so powerfully about something that nobody sees"—migraines--and even though I don't have migraines, I don't suffer from them thankfully, the story gave me sympathy for people who do suffer. I know a lot of people who suffer from migraines. The story made me think differently. I felt with my asthma...I feel when I write any of these personal stories...I have to get over a hurdle at the beginning but then I begin to feel, we are all struggling in our own way, whether it's with loss or trauma or illness or whatever it might be so if I can tell a story, maybe a few people out there in the world can say, "Yes, that was me, too." A number of people responded to my story on the Commonhealth blog, on my blog, and NPR ran it on their blog with their own stories of childhood asthma. It just kind of adds to the conversation of life. I used to feel ashamed about writing these pieces. "Who's going to care?" "Why would anyone care about my life"? But I’ve learned that these stories do resonate. I'm drawn to personal stories whether in books, memoirs or articles... I thought, "Why shouldn't I be a part of this dialogue?" I have a kooky story. I think I can tell it with a little bit of humor or something that will make people keep reading. So, I’m just going for it.

Annie Brewster: Do you feel like writing about it has changed your relationship with other people?

Sarah Baker: Absolutely. Even though I’d written it a while ago, when it came out it was very raw for people. One friend, for instance, stopped me on the street. She's a therapist, and she said, "I'm going to think very differently about the kids I treat that have asthma...a lot of it is from the stress of their homes." Because I wrote the story a while ago, by the time it was published, I was closed off to it. But for people who had just read it, it was still very raw. It was hard for me sometimes to know how to respond because the enthusiasm and the kindness and the overwhelming support was so powerful. I didn't always know how to respond. I just tried to be gracious.

Annie Brewster: Did your children know all this about your asthma and your life and the struggles and your mother's death before you wrote this or was it new for them to read it, or did they read it?

Sarah Baker: They haven't read it yet. I'm wondering when to show it to them. They’ve heard bits and pieces of my story but they haven't read any of my writing yet. I was just thinking today about when I would show it to them. I showed it to my nephew, my brother's son, who is a junior in college. He responded so thoughtfully. I think the article helped him understand his father's story, and helped him understand me. I will show it to my kids when I feel they're ready.

Annie Brewster: What do you think it would take for them to be ready?

Sarah Baker: Well I don't want to scare them. I don't know...maybe I am underestimating them. I have a fourteen year old and an eleven year old. Maybe after this interview, I will go home and show it to them and see what happens.

Annie Brewster: That would be interesting. I'm interested in the motherhood piece and I was really moved by your story of your mother's illness and her death and how that affected you. I'm wondering if you can speak to the interplay between that loss and that pain before the loss and your asthma. What was the interaction? Stress you named already but was there more that...it's all so woven together and complex I know, but how do you think those things played off each other?

Sarah Baker: I'm only beginning to learn about that. But I think they absolutely played off each other. In my piece, I quote Senesa who said he’d had a lot of illnesses but asthma was the worst because it was like “rehearsing death.” It’s intense to think about that. I had asthma before she died. She got sick when I was three and I had my first attack when I was eighteen months old so I had already had it. But to have my mother die and then to have this disease that's "rehearsing death" where I couldn't breathe; there has got to be a link there. I don’t understand completely. I am still exploring it.

Annie Brewster: Yes. I was struck by the image of the two of you sort of in parallel, in different hospitals, but across the city from one another, so apart but together in an interesting way.

Sarah Baker: Yes. It must have been impossible for my father who had a full time job in the navy and had to commute between these two hospitals. My mother was at John's Hopkins because they were doing cutting edge research on brain tumors. She actually lived a lot longer than they expected... and then I went to Bethesda Naval Hospital across the state of Maryland. We lived in Virginia. Sometimes my Dad had to drive over 100 miles a day going between the two hospitals. Right before my mother died, my father was in the hospital for an ulcer. That's not surprising. I had been in the hospital for an asthma attack and my mother was actually, she had been at home and was actually put in my hospital, so she could be near everybody. That's when she died. But I never saw her.

Annie Brewster: I'm just sort of talking off the top of my head here but, in hearing you speak and sort of thinking about this image of "rehearsing for death" and her death, do you think in any way that your asthma worked to keep you sort of connected to your mother in a way? Or does that not feel like it fits?

Sarah Baker: I'm learning a lot about that now and I think absolutely. I think when you lose a mother or a parent early in your life and you don't go through the grieving process, I think you become very loyal to the sadness and I think there is a part of you that unconsciously, because you're little and you don't have the words for it, says, "I'm going to stay loyal. I'm never going to be as happy as you were.” And so, yes... I absolutely think that when you lose somebody when you're little, you make these silent pacts with them to stay loyal to the sadness, to stay loyal to what they went through...to keep them on a pedestal and to hold them in this special place in your heart.

Annie Brewster: Do you think sort of unconsciously maybe you would have felt like getting better and not having asthma anymore would be a betrayal of sorts?

Sarah Baker: It’s risky to say any of this because I did have asthma and I wouldn't want to take away from anybody that does have asthma. But, I had a lot of trauma and maybe this was one of my ways of staying loyal to her. I don't know. This is all speculation. It's just curious now as an adult when I don't have asthma and it went away so quickly once I had stability...I'm just now looking at these questions and wondering, what went on really?

Annie Brewster: I think you're right to say that you don't want to take away from anyone who has asthma, and I was wondering that and I was going to ask you, what is your thought on what role two individuals play in creating their own illness and to what degree are we responsible for that? I know that's a big question and it's really complex but...

Sarah Baker: I don't have any authority to answer that question... I can only tell my own story. This is all speculation. My parents were both smokers; it was a time when people smoked. We lived in a house with wall-to-wall carpeting and you know, it could have been that my environment changed, I don't know exactly and I'm reluctant to say that we create our own illnesses. I'm just looking at my own circumstances and wondering. My son has asthma but it's minor and we manage it. He's never been hospitalized. Maybe, my asthma would've been like his. Maybe I would've had it but it would've been milder.

Annie Brewster: I absolutely agree with you, I am very reluctant to say that anyone causes anything but I think it's a complex interplay between genetics, the predisposition that we have and our environment and our stress and our psychosocial circumstances and all of that. So, of course it's impossible to say. And sometimes I think there is just bad luck and that's a factor. Can you say how maybe having lived through both asthma and your mother's death may have changed the way you mother today?

Sarah Baker: Both absolutely inform my parenting They inform everything I do, not consciously maybe; but, I know I have a fear of loss. Also, I had such a crazy childhood that I’ve always wanted to make sure that my children have a happy, joyful, stable childhood. I've made a lot of choices to make sure of that--sometimes even putting motherhood in front of other choices that I might have made.

Annie Brewster: Are there parts of you that you love that you feel came to you because of these difficult experiences in your life? Things that you're proud of; strengths that have come out of that?

Sarah Baker: Well, I do think that I have resilience and grit (two buzzwords these days). I wouldn't wish my childhood on anyone but I did have to learn how to cope and I learned how to be around all sorts of different people and circumstances. They're positives and negatives to that. I think it made me flexible but then it kind of...you reach a point where you become inflexible because you're tired of always trying to accommodate other people. So, there are positives and negatives.

Annie Brewster: I love the image of you're singing and the sort of juxtaposition of the asthma and the singing and the different ways of using your lungs and your breath. I thought that was very beautiful. Can you tell us more about your singing and how that feels to be taking voice lessons?

Sarah Baker: In the beginning it was unbelievable what a bad singer I was. I was inhibited; I couldn't even get the sound out. It took a long time. After four to six months, my teacher realized that I was probably a little tone deaf so then she did some ear training. Slowly, I've gotten more comfortable and I've been able to access the different parts of my breathing and my voice. Recently, she told me I could sing soprano. What a shocker!

Annie Brewster: Do you feel like somehow, I mean I'd be afraid to take voice lessons, it takes a lot of courage. Do you trust yourself more now? Is allowing yourself to sing...does it have anything to do with trust or letting go? Can you speak to that?

Sarah Baker: Absolutely, it has to do with finding your voice literally and feeling that your voice matters in the world and that you're not embarrassed by it. My first year of singing lessons was about quieting my inner critic. The one that says, "No one wants to hear this." Same thing with the writing, you know. My singing teacher was so gentle and kind. She just kept saying, "Don't criticize yourself, and just sing. I want you to sing loudly and I want you to just go for it and don't think about anything other than that." It was through that process, of just going for it and being completely uninhibited, that the sound started to come out.

Annie Brewster: That's amazing. What made you decide to take the voice lessons?

Sarah Baker: There are so many opportunities to sing in the world and I was never singing. I lacked confidence. I wanted to sing at school assemblies, or birthday parties, or wherever, and feel good about it. So, I just went for it.

Annie Brewster: Do you think that writing about all of this and in a public way has changed your relationship with your father? Is his still living?

Sarah Baker: Yes, he is still living

Annie Brewster: And your brother, you said you had a brother. Do you have any other siblings?

Sarah Baker: Yes. I have a brother. I also have a half brother and half sister.

Annie Brewster: So, has writing altered those relationships?

Sarah Baker: Yes. I think for my brother who has his own business and works very hard, I can write these stories and send them to him. He can relive with me some of this trauma that we just had to run as fast as we could away from. My writing has made me closer to him. I’ve given my dad some of my pieces, not all of them. I'm worried that he might feel hurt by them. One piece I gave him, he responded by saying, "Well, I actually didn't think that paragraph was accurate." It’s all perspective. It was accurate for me and so, I'm sensitive about showing things to him because I'm protective of him but, I also...It's through my writing that I've gotten to know my own story. I'm not blaming anybody at all. I'm not trying to judge them. I'm just trying to tell the story. I'm getting more confident with showing him my work and not worrying. I have some essays, though, that nobody has seen except for classmates or very close friends. I worry that people will be offended by them.

Annie Brewster: Tell me about the memoir you're writing.

Sarah Baker: I had written a bunch of essays like the asthma story and realized I had about forty-five pages. In them, I kept telling the story of my mother and her death over and over but in different ways. Then I read the book "Wave" which is a spectacular memoir by Sonali Deraniyagala. She's Sri Lankan. She lost her whole family in the 2004 tsunami. It's an unbelievable book. After I read it (it took me two and a half hours and it was painful to read but it was so powerful), I thought she's done an incredible service for the rest of us. I learned what she went through, and how she came out and I thought, "Maybe I can write a book that is a legacy of loss." The story of a little girl who has lost her mother and her father who, as I say was "out to sea" (because he was out to sea, literally), and who lived with her relatives - how I carried that loss into my adulthood. I want to tell a story of how we carry loss and what happens when it's not tended to properly.

Annie Brewster: So, it's a giving back of sorts.

Sarah Baker: Yes.

Annie Brewster: You articulate - you say reading "Wave"-I want to go out and read it now-it tapped into something in you and it's that giving back piece that I'm interested in. What do you think, I mean it moved you, but what else did it offer you? Can you articulate that?

Sarah Baker: First, it is absolutely beautifully written so it is a great example of writing and structure. But more than that…she lost her parents, her children, and her husband and I just don't know how anybody could ever survive from that. She paints this picture of how Elizabeth Kubler Ross in many ways was wrong. I don't know if wrong is the right word but The Five Stages of Grief, you don't pass through them very easily. They are messy and they are morphing and in this book you see that. The other part of the book that was powerful for me was that she had a real community to support her. She had friends and relatives there to take care of her and it took a long time. It took a long time to even think about her family that she lost. And then, how she very carefully pieced it back together with memory where all of a sudden she could go back to her house in London and all of a sudden she could begin to think about her husband and then she could begin to think about her parents. That’s the way grief works. It doesn't happen all at once; it comes gradually and in an agonizing way. She describes it so beautifully and accurately. I wouldn't say that at the end of the book that she, you know you never recover, but she's living her life and she's written this beautiful book and she's helping people in the world who have experienced loss. It is brave of her to have written the book.

Annie Brewster: Absolutely. I also think it is really helpful to see an example of the truth, which is that it's messy, it's gradual; you don't always know that you're going through the process when you're going through it. It's not clean and I think that is freeing to other people who are in the midst of it.

Sarah Baker: Absolutely, yes. A family rents her parent's house, for example. They move in and she can't stand that they're living there. She goes to their house at night and rings the doorbell and runs away. She torments them. This is a woman who is a professor at Columbia now, I believe. I mean she's incredibly educated and that is where grief took her. It took her to terrible depths. She drank. I mean she had a real drinking problem for a while. She really scraped hell; she scraped the bottom. Maybe it was what you asked earlier about being loyal to death, to the deceased. Maybe she thought, "I'm not going to have a better life than you are. I'm going to live an equally bad life." Maybe she was unconsciously creating a hell for herself to show her loyalty to the people she loved and lost.

Annie Brewster: That's well said. Also, I think it's so helpful to see the movement; that you can hit those depths of horribleness and then move out of it and I think that is always so helpful to see when you're in the midst of something. That you're not going to get stuck there, that you're going to pass through. So, do you feel like "Sassy Pants" is back?

Sarah Baker: "Sassy Pants"... Yes! I feel like Sassy Pants is... It is kind of sassy to publish an article about my asthma I think and send it out to the world. You've got to be a little bit sassy to put yourself out there like that. Maybe you have to be a little sassy to sing, especially when you're going for those high notes. So, yes, I think Sassy Pants is back and she's breathing well.

Annie Brewster: I love thinking about this image, again, the singing, I just think it is such a joyful thing and it is so freeing. I love this image of you swaying with the music, with the sound bursting out and it feels really hopeful. I'm wondering, do you feel like you're at some sort of transition point where you're more free to dream about the future and what it holds and letting yourself deserve these things...does that feel accurate? And if so, what are the things you're dreaming about? What lies ahead for you?

Sarah Baker: I'm getting there for sure and I think I'm dreaming about being able to... I never even thought I'd be able to write; I didn't think I knew how. I learned how to write in my forties. I took a grammar class. I started at the beginning. I had been an editor, I think I have an ear for language. But, I had never written a story before. It must be about my forties--you start to look at your life differently and see what you want to get done. I have just gotten comfortable thinking about myself as a writer and actually believing that my writing resonates and that it is worthwhile to write and publish. So, my dream is to write this book, to be able to work through all of these different chapters of my life that are hard to work through and figure out a way to tell it so that maybe my story can help other families or other children out there who also suffer from a loss, like the one that I did. That's one dream. My other dream is to be able to be present--to be able to feel the goodness that is all around me because I'm absolutely surrounded by goodness but I don't always feel it. So my dream is to really see what that is like—to feel present all of the time. That would be amazing.

Annie Brewster: Awesome. I'm excited to read your memoir. Thank you.

Sarah Baker: Thank you.