Harnessing The Healing Power of Stories

 

Health Story Collaborative Blog

Harnessing the healing power of stories...

An Unexpected Source of Strength: Depression and Meaning Making

By Jennifer Pustz

 

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.

The Power of Story

 

By Faith Wilcox

 

This fall I had the privilege of participating in a Harvard Medical School Continuing Medical Education workshop that focused on individuals sharing their personal narratives. The presenters were coping with either a life-changing medical condition or care giving for a family member who is suffering.

 

The workshop was created and delivered by Annie Brewster, MD, Internist at Massachusetts General Hospital and Executive Director and Founder of Health Story Collaborative(HSC), and Jonathan Adler, PhD, a Clinical Psychologist, Researcher, and Chief Academic Officer of HSC.

 

Dr. Brewster spoke about how she kept her multiple sclerosis (MS) diagnosis a secret for years, but later discovered the therapeutic value of sharing her story. Dr. Adler spoke to research that cites that individuals who write and share their serious medical illness experiences have had improved physical and psychological outcomes. He continued by discussing “narrative identity,” a creative process through which individuals challenged by serious illnesses can make sense of what happens to them, and even make meaning out of experiences beyond their control.

 

The guest speakers, Elizabeth Jameson, a woman living with MS, and Paul, a caregiver for his son who struggles with an opioid addiction, powerfully articulated the power of sharing personal narratives. After Elizabeth’s MS diagnosis abruptly ended her law career, she searched for ways to express herself and to connect with others. She began to create art, and her subject matter was MRI scans of her brain. Elizabeth’s colorful and stunning etchings and paintings show how she reinterpreted stark black-and-white MRI images into creative and often uplifting works of art. Her art is in permanent collections at the National Institutes of Health, UC Berkley, Harvard, and other institutions. Even though she is now a quadriplegic because of her illness, Elizabeth has turned her creative talent to writing and has published articles on patient-centered health care in The British Medical Journal, WIRED, The New York Times, and other publications.

 

The other presenters were Paul (who doesn’t share his last name) and his son (represented by an actor) who performed Resurfacing, a narrative they wrote together about their experiences as a father who sometimes succeeded and other times stumbled in his role as caregiver, and his son who was in and out of addiction rehabilitation settings for over a decade. The raw honesty with which they recalled their many painful and frightening experiences and the authentic portrayal of their anger, fear, distress, and love rapidly drew the audience into their spellbinding drama. The writing of their narrative was also guided by Dr. Brewster and Dr. Adler, and it was shaped into a play in collaboration with COAAST, Creating Outreach About Addiction and Support Together.

 

If any of the 100 workshop participants, who were social workers, psychiatrists, nurses, doctors, and about a dozen caregivers and patients, had harbored doubts about the healing power of sharing personal medical narratives prior to this session, there was no doubt that by the end of the day, they were believers.

 

 

Originally published at https://www.faithwilcoxnarratives.com

 


 

 

 

 


 

 


Lessons Learned

By Faith Wilcox

 


 

 

 

 

 

 

 

 

 

One year—365 days to be exact—was unlike any other year in my life. In the waning days of summer, my thirteen-year-old daughter, Elizabeth, was diagnosed with osteosarcoma, a rare bone cancer. My once-active, athletic child lay prone in a hospital bed while I watched chemotherapy drip, drip, drip into her central line. Cold air wafted down from the air ducts above and sent chills through us. Only weeks earlier, Elizabeth had raced down the lanes in summer swim meets, biked with her fourteen-year-old sister, Alex, to their favorite bakery, and relished overnights with her friends.

 

I remember the night that her doctor told us that Elizabeth had tumors in her femur, hips, sternum, ribs, skull, and lungs. Elizabeth gasped for breath; I was rendered speechless. All I could do was to hold her hand, look wordlessly into her hazel-colored eyes, and repeatedly push the call button asking for more Ativan until she eventually stopped hyperventilating.

 

And yet, as Elizabeth’s chemotherapies sequestered her physical strength, her awareness of those suffering around her grew. One day she told me, “Be happy, Mommy, and remarry one day. Go and read with children again like you did when I was in first grade.” And she grew braver. When children were newly admitted to MassGeneral Hospital for Children, she slid off her bed into a wheelchair, pulled up the hood over her bald head, wheeled herself down the hall, and knocked on their doors.

 

One mother came up to me and said, “We just found out that my daughter has cancer, and we are so scared. During our first evening in the hospital, your daughter lit up our room with her radiant smile and asked if we had any questions. We asked her about what to expect, and she told us what would happen in a language that we could understand. We’re still shocked, but she eased our fears.”

 

How did my once-often-shy-teenager blossom into a compassionate and knowing young woman? This is what I’ve learned: a devastating illness stole her precious life but it will never, ever claim her indominable spirit, which lives within each of us who knew and loved Elizabeth.

 

To learn more about Faith’s and Elizabeth’s journey, please go to faithwilcoxnarratives.com.


Courage Is Contagious

An Interview with Dr. Anne Hallward

 


 

 

 

 

 

 

By Val Walker

 

ABOUT DR. ANNE HALLWARD

 

Dr. Anne Hallward is the host and founder of Safe Space Radio and a board-certified psychiatrist in Portland, Maine. Anne’s interest in difficult subjects began in her teens, when she noticed how few adults around her seemed to be talking about intimate or difficult subjects. Formerly on the faculty at Harvard Medical School and Cambridge Hospital, she designed and taught courses on death and dying, cultural competence, sexuality, and psychiatric interviewing, and has published on death and dying, cultural bias in medicine, sexuality, and hunger in the Philippines and Bangladesh. Anne is the recipient of the Ulrich B. Jacobsohn Lifetime Achievement Award from the Maine Association of Psychiatric Physicians, the Jeanne Spurlock Social Justice Award from the Association of Women Psychiatrists, and the Exemplary Psychiatrist Award from the National Alliance on Mental Illness (NAMI). She has also been recognized for her work in radio with a Gracie Award for Best Host of a Local Radio Show. Anne speaks internationally on stigma and shame, traumatic silence, and voluntary vulnerability as a form of leadership.

 

INTRODUCTION: WHY I WANTED TO TALK WITH ANNE

 

Could there be anything lonelier than not being able to talk about something terribly difficult—something that no one feels safe talking about? One of the greatest causes of social isolation is carrying the burden of stigma, shame or silence. We need safe spaces, or safe people, for sharing what is keeping us isolated and ashamed. Safe spaces are essential to breaking through the walls of isolation. I’d heard of Safe Space Radio in the years I’d lived in Maine yet had never listened to it until I moved to Boston a few years ago. Anne Hallward, a psychiatrist, was the host, so I’d wrongly assumed it was for issues about mental illness until I recently discovered it’s for talking about anything that’s hard to talk about.

 

The first thing I saw on Anne’s website for Safe Space Radio says it all: The show about the subjects we'd struggle with less if we could talk about them more. Heartened after reading her engagingly informative website and listening to a podcast, I reached out to her, first with an email, and then with a phone call. She graciously answered, and we spoke right away.

 

I was grateful that Anne could take time for an in-depth conversation about what it takes to create a safe space, and how safe spaces help us break through isolation. Our conversation alone was powerful enough to give me a boost to be more courageous in “going there” with the topics we usually shy away from. After speaking with Anne, I have a new motto: Courage is contagious.

 

INTERVIEW WITH DR. ANNE HALLWARD

 

Val: Since launching Safe Space Radio in 2008, you've interviewed hundreds of guests. Though you’ve covered a wide range of compelling topics, has there been a common, prevailing message from all your guests through the years?

 

Anne: Yes, there is a common message. People have a wish to turn their struggles into a gift for others. They give voice to hidden and silenced stories in order to help others. We started out with a focus on reducing the stigma of mental illness, so I talked with many people who had struggled with depression, anxiety, or addiction. Each guest wanted to share their story because they didn’t want others to feel as alone as they had. They wanted to help to reduce shame and stigma. Soon we began to include a much wider range of topics including homophobia, racism, sexuality and death and dying, and each guest brought the hope that the story of their struggle could be freeing to others.

 

Val: Because we all have a sense of what a safe space means, I would love to know what safety means to you.

 

Anne: I used to think that safety referred to the absence of physical threat. But now I think of it more internally, as the feeling of being able to be fully oneself. A common threat to a sense of safety is shame, and the forces, both internal and external, that tell us that we are not good enough.

 

So, safety begins inside ourselves and then extends to our personal relationships, our communities, our culture, and our nation.

 

Safety means being able to reveal our whole selves to each other and that entails two important things: feeling able to share our vulnerability as well as our strengths. The invisibility of either side is painful, so being safe means we are free to express both parts of ourselves. For example, when thinking of refugees, we often only see their suffering and don’t see their gifts. They had to flee their country, arriving here as people of color, needing help. The lens of a stereotype can blind us to their extraordinary gifts. For women, and people of color, and those with disabilities and other marginalized identities, safety is not only about honoring difference and vulnerability, it is about seeing and respecting strength.

 

Sharing our vulnerabilities as well as our gifts also applies to the topic of asking for help. I’ve learned from my guests that we avoid asking for help because we are afraid that our needs will define us. We fear that people will only know us through our needs or vulnerabilities. Indeed, if either our gifts or our vulnerabilities are invisible, it’s very painful. If I trust that you can hold both sides of me in your mind, and we can fully know each other—then that’s what safety means.

 

Val: I’ve never thought of safety in that way—to be able to show our vulnerabilities as well as our gifts. So, when you have a guest on your show sharing a painful ordeal in her life that was stigmatized and shamed, her strengths still shine through. But, speaking of stigma, can we ever get rid of it?

 

Anne: Erving Goffman (a well-known sociologist) says, “Stigma is a sense of spoiled identity that you cannot wash off.” That’s why we need to share our strengths at the same time we share our vulnerabilities, so the needs don’t end up defining us in a stigmatized way. We need to see each person as whole. Safe Space Radio is one public health approach to fostering greater empathy and understanding in order to reduce stigma. As the famous gay activist, Harvey Milk, once said, “This is how the revolution will happen, one lonely teenager at a time.” Each time someone dares to come forward publicly with a silenced story, the culture shifts incrementally.

 

 

Val: Your message is powerful. But what if we are socially isolated and don’t have a safe person to turn to? To confide in?

 

Anne: Therapy has a tremendous value here. Many of us have had painful experiences of trying to share our vulnerability with someone, and feeling judged or rejected, so we might be understandably afraid to make ourselves vulnerable again and could benefit from a therapist with whom we can practice being vulnerable. Support groups are also spaces to practice being vulnerable. If there are no support groups that you feel you can belong to, then you could start your own. For example, Alyson Thompson, a biracial woman in St. Louis was struggling with feeling left out, isolated and feeling like there was nowhere she belonged. She created a monthly meet up group through Facebook, called “Mixed Feelings” which has attracted a large group of other biracial folks in her area.

 

Val: That’s a great name for her group. Facebook was an ideal way for Alyson to launch her group. But looking at social media overall, do you think it decreases social isolation or increases it?

 

Anne: Social media can go both ways. It can bring people together (as it did for Alyson), but it also can be isolating because comparing ourselves to others can be a source of great loneliness. Research on social media is not my area of expertise, but social media seems to perpetuate “in your face” comparing of ourselves with others which can make us feel inadequate and alone.

 

Val: What inspired you to start Safe Space Radio?

 

Anne: From a young age, I’ve always been hungry to talk about the things that weren’t named--topics that were avoided and kept secret. When I was in medical school doing my pediatric rotation, I watched children being held down while tubes were being put in them, and watching their distress really troubled me. Of course, these procedures were necessary and life-saving, and were done with the best intentions, but it still troubled me, and I wanted to find out more. I began doing research on this topic, as well as research with my own medical records from my childhood.

 

I made a discovery. I found out that I was hospitalized for a serious infection as a toddler of 18 months and isolated for 10 days on an infectious disease unit. My mother had just given birth to my younger sister and was not allowed to visit me for those 10 days. This was a traumatic experience for me, and I had many nightmares throughout my childhood. Yet no one ever spoke about this. Childhood medical traumas like these are often unrecognized, because the intention of the doctor is to help the child. But from the perspective of the child, the experience may feel akin to assault.

 

But thank goodness for my medical records, and for medical school that uncovered what had happened to me! I felt a great sense of relief that my early experiences could be named. And I felt a deep passion to humanize our patient experiences by sharing our stories. I now ask new patients about medical trauma whenever I take a trauma history, and this has brought up so many stories of suffering that the person hadn’t fully understood or recognized as being legitimate trauma. I began a research project by interviewing women with a history of childhood medical procedures, measuring the long-term psychological consequences. The surprise to me was how grateful they each were to have their struggles validated, and how eager they were to let me use their stories to try to change and humanize medical practice. The experience of living with the shame of a silenced story, then discovering the power of telling it for my own healing and the healing of others inspired me to begin Safe Space Radio.

 

Val: That is an amazing story, Anne. It must have been so frightening at 18 months old to be isolated in a hospital room, separated from your mother among strange people in white coats doing painful procedures. It’s so important to tell this story.

 

Anne: I would like to share something I learned from guests on my show about what it takes to tell our stories. I used to think my role as the host was to create a really safe space so my guests could tell their most courageous story. But over the years, I’ve learned that I had it backwards; it was their courage that creates that safety for others and for our listeners.Where there is safety, there is someone who has had the generosity to make it so through their own courage.

 

When I was interviewing Ebrahim Rasool of the Truth and Reconciliation Commission of South Africa, he told me a story about the role that psychiatrists can play in fostering courage. He said people who had been tortured were offered an opportunity to see a psychiatrist before they gave their testimony to the commission. The role of the psychiatrist was to foster their courage, to help them tell their story and give voice to their silenced trauma. He called this the work of “en-couragement.” He told me that we should always think of the word en-courage as having a hyphen. He taught me that hearing the stories of others and being taken seriously when we dare to speak foster our courage. Courage is contagious. Learning about the meaning of en-couragement transformed my work as a clinician. An important part of my role as a psychiatrist is to foster courage.

 

 

 

 

Val: It rings so true when you say courage is contagious. We can foster courage in each other by telling our stories. That’s why Safe Space Radio is so powerful. I’m wondering what topics you will be covering this fall? Any new initiatives?

 

Anne: We are now in conversations with WBUR to be our distribution partner to NPR stations nationwide. We are creating a 4-part series that covers topics that are hard to talk about. The first show is called Apologies. What do we need to make our apologies truly healing? The second show is Asking for Help. We often underestimate people’s willingness to help and miss opportunities to be supported by others. Our third show is called Loneliness. How can we reduce the stigma and shame about loneliness? And finally, the fourth topic is Talking to Kids about Race and Racism. White people tend to feel awkward about this topic. How can we find useful ways to help kids understand and begin to address the disparities they see around them without reinforcing stereotypes?

 

Val: We could learn so much from courageous conversations about these topics. Anne, you’ve opened my eyes about what a safe space really means and about how our stories foster courage in ourselves and one another. People like you encourage us to be brave and to speak about the unspeakable things. Thanks so much for your time today.

 

Anne: Thank you. I enjoyed our time.

 

 

 

Val Walker 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. Keep up with Val at www.hearteningresources.com.

A Life I Love

 

There are days when dealing with this chronic illness just becomes too much and I simply want to curl up in a corner and wait for it to end.

 

I’m tired of all the doctor appointments, being sent from specialist to specialist, trying to explain over and over again the many symptoms I’ve been experiencing every day for the last 5 years.

 

I’m tired of pain, of weakness, exhaustion, difficulty breathing, night sweats, lack of sleep, trouble swallowing, muscle spasms, twitches and involuntary kicks and flinches, and all the other symptoms that have joined the party.

 

I’m tired of trying medication after medication, hoping to find one with minimal side effects or allergic reactions.

 

I’m tired of dealing with the insurance company and explaining to doctors why I can’t work. I’m tired of feeling like I need to convince everyone that there is something very physically wrong in my body when to the outside world I look normal.

 

I’m tired of doctors giving one diagnosis, then another, doing their best but not able to provide any words of comfort. First, they say I likely have ALS, then Amyloidosis, then Isaac’s Syndrome, then some other horrible incurable disease but no one can be sure yet, so I’m told to wait to see how it progresses. I’ve waited and I’ve waited, it’s been 5 years, can someone just tell me what the heck is going on?

 

I’m tired and weary. These are the thoughts that rise to the surface of my mind from time to time, and I’m starting to feel more comfortable with that now. I’m learning to give myself space and permission to feel what I feel when I feel it.

 

For me, this means…

             - Allowing myself to feel sad on days when it’s really windy and I long to be windsurfing

             - Acknowledging that I really miss having a healthy body that’s able to participate in all of the sports I love    

             - Having the courage to say no when asked to join friends for an evening out, trusting that they will ask again and not give up on me because of my illness

             - Making peace with the reality of a life that is largely lived indoors, and being much less active than I would like

             - Admitting the feelings of guilt I have about not being able to work and not advancing in my career

             - Accepting the feeling, whether real or created in my own mind, that I’m being judged for not trying hard enough

             - Allowing myself to feel angry and frustrated because there is no end to this illness “treadmill”, and there is nothing I can do to change it.

 

I don’t have to save myself from these uncomfortable emotions by plastering on a brave, happy face when I feel like crap because let's face it, being chronically ill sucks. I don’t stay in this headspace all the time because I don’t feel this way all the time, but I do let these thoughts and feelings have their way with me when needed, knowing that I can always find my way back to a place of happiness and contentment.

 

Discovering the Buddhist art of being present to life just as it is, completely free from judgment, has been paramount in helping me learn to stay open to all of the thoughts and feelings that arise through chronic illness. The practice of remaining open-hearted toward all of my experiences has reduced my resistance to the various difficulties I face and has given me the ability to unconditionally accept the circumstances of my life. Viewing my challenges with kindness and treating myself with compassion empowers me to make good choices for myself and helps me think creatively about the life I want to live.

 

Self-compassion has stretched me into learning how to accept help and kind words from friends where earlier I would have tried to go it alone because I didn’t want to show weakness or be a burden to anyone. I’ve also learned that when I’m having a pretty rough time physically it’s okay for me to say, “I don’t have to have a ‘productive day’ today; today I’m watching Netflix because that’s the very best and kindest thing I can do for myself."

 

This willingness to kindly do what my body requires by accepting help or resting for weeks on end is no longer something that makes me feel less-than or weak; it provides what I need for living a full life. I’ve become truly happy again and am loving life and all the possibilities it holds, despite my illness and its restrictions.

 

Self-compassion has given me what I need to look at my life and situation in a way that says, ‘My illness isn’t who I am; I’m someone who still has a lot to offer to the world’. I’ve become excited about my life and what may be on the horizon instead of being fearful of what might happen. My illness has benefited me by giving me the time for some much-needed self-reflection, which has led to a greater insight into who I really am, how much I’m loved, what I love, and the many ways I can still add value to the world. It feels a little like I’ve been given the gift of a new life.

 

While I can no longer do many of the activities I love to do, like windsurfing, tennis, golf (just about any sport really), I have begun to discover that I am much more than the sports I played or the career I had. I have a wide variety of loves in my life that previously I either ignored or just hadn’t noticed. But because my health has thankfully required me to slow down, I am discovering them now.

 

I am so much more mindful of the beauty, life, and love I see all around me every day. I enjoy it in the deep and meaningful conversations and experiences I have with my wife, I experience it in the wonder of nature and the myriad shades of green that bloom at the beginning of spring, I see it in the care-free dogs that are affectionately taken for walks beneath my balcony every day, I hear it in the laughter and joy of the children playing at the nearby school, and just as nature and dogs never seem to worry about what’s in the future, these kids have yet to discover that worrying and looking ahead is a “thing”: they are just revelling in each moment.

 

Learning to live this way has not eliminated my illness and symptoms, but it has started to remove the suffering caused by focusing on what is wrong, what I can’t do, and what could go wrong. I have slowly found myself realizing that, although I’m not healthy, and physically I sort of feel like I’ve been hit by a bus every day for the last 5 years (and that bus always seems to back-up to hit me one more time just to be sure I don’t walk away without a limp - I hate that dang bus), I’m not suffering anymore. I’m learning to live life defined by what I love, not by my illness.

 

Because of poor health, my career may have stalled and my physical abilities may be limited, but my capacity to be curious, to take a deep inner look at myself, to learn self-compassion instead of self-pity, to try new things that I would have been too fearful to attempt in my old life, to be willing to take chances like I’m doing right now by writing, have flourished.

 

At 51-years-old I’ve finally realized that my purpose is to keep discovering what I love, doing what I love, sharing that love with others, and showing those closest to me that they are truly and deeply loved. Chronic illness might have the ability to impose boundaries on my life but it will never be able to set any boundaries on the things I love.

 

I find myself no longer waiting for my illness to depart and my life to arrive; I truly have a life I love right now.

 

 

Within the boundaries set by a mysterious neurological condition, Chad loves spending his available energy enjoying good food, getting lost in different worlds through writing and reading, strolling in the sunshine, watching sports and being an armchair quarterback. He lives on the Canadian Prairies with his wife (who is also managing her own chronic illness--what a fine pair).

 

 

 

Healing Story Session National Expansion: Request for Proposals

 

Request for Proposals:

Project Developer: Healing Story Session National Expansion

 

Background: Health Story Collaborative, a nonprofit committed to harnessing the healing power of stories, is seeking a contracted project developer to manage the process in the expansion of their Healing Story Session program. This research-based process of storytelling works with patients, health care providers, and their communities to support healing, community, and resilience. After successful pilots in two locations, the program is now expanding nationally and seeking a contracted project developer to work closely with the Executive Director and Chief Academic Officer to oversee this expansion. In May 2018, we organized a story session and training in Minnesota for 200 people, with several strong sponsoring organizations. Interest in this work is high. We are looking for an additional partner to grow with us.

 

Project goals:

Within 18 months:

 

● 400 people trained in the methods and research behind Healing Story Sessions

● 200 people active in a healing story network, sharing learning, building relationships, and developing collaborations to harness the healing power of stories

● 20 people certified as healing story session facilitators

● 10 organizations, such as health care systems, integrating healing stories into their work

● Financial engine for overall healing story network and local healing story sites sustains ongoing work and expansion

 

Qualities sought in the Project Developer:

● Entrepreneurial

● Relational

● High level of skill in developing and managing projects and partnerships.

● Able to work well independently, as well as collaboratively

● Ability to generate and manage income in mission-driven projects

● Ideally, experience and interest in storytelling and/or health

 

Contract position, part-time, variable hours based on project stage and availability. Others on the Health Story Collaborative team are based in Boston and Minneapolis. A contractor based in one of these locations would be an advantage, but isn’t essential. Most work will happen remotely.

 

Project process overview:

 

Research possible partners for the expansion and build partnerships that serve both Health Story Collaborative and the partner’s organizational goals, including with: CaringBridge, the Center for Spirituality and Healing,storytelling organizations, and academic institutions, including medical schools with programs in the medical humanities.

 

Organize webinars and public events in key locations to introduce the Healing Story Session model to a diverse mix of individuals and organizations in ways that attract interested people and invite deeper involvement. Use online reading and videos for preparation and follow-up after events and webinars.

 

Develop tiered levels of training and involvement, both online and in person, including:

● Training for facilitators and organizers of Healing Story Sessions

● Certification of facilitators, with remote mentoring and feedback of their Healing Story Session work

● Customized trainings in the application of healing stories for physicians, patients, social workers, and other specific roles

● Ongoing coaching and technical assistance for people facilitating Healing Story Sessions that balances the integrity of the model with flexibility and creativity of application.

● Consulting with organizations as they integrate healing stories into their work

 

Oversee the development of an online network hub for connecting with others in the network, and sharing information.

 

Develop ongoing evaluation and learning processes to assess the impact of the project and continuously improve the model and implementation.

 

Envision and manage project income generation through training fees, donations, consulting, and manual sales.

 

The first phase of the project is to build organizational partnerships for this expansion and organize an initial webinar story session and workshop. We are seeking a part-time, contracted partner to lead this phase. If that phase goes well for the contractor and for Health Story Collaborative, we anticipate renewing and expanding the contract to continue the project.

 

Proposals should be sent to Michael at michael.bischoff@healthstorycollaborative.org. This RFP was posted on June 25, 2018 Open until filled. Questions by email welcome.

 

Please include:

● An explanation of your interest. Tell us a good story!

● Your qualifications and relevant experience

● Your availability, including the amount of time you would have available for this part-time position

● Contact information for 3 references who have seen you do related work.

● Tell us what you imagine accomplishing in an initial contract of $2,000 as a part of phase one of the project, described above. If you have a proposed hourly rate or other suggested ways to structure payment, include that in your proposal. We anticipate stages of the project that adapts the payment and responsibilities based upon project progress, income generation, and needs of the contractor and organization.

● We don’t expect one person to do all of the things listed above--but to shepherd the process. Tell us how your strengths and interests would best fit with this project.

 

A Reckoning with Social Anxiety

 

By Mikayla Valdes
 

My social anxiety plays me like a deceitful little game, except I spent the last 15 years pretending like I wasn’t on the court. The painful shyness I faced as a child, my inability to smile at any adults except my parents until the age of eight, the meeting with my fourth-grade teacher that my concerned mother sat through, afraid her daughter wasn’t voicing her needs: it’s always been you, dear social anxiety. My conviction in middle school that my friends didn’t care about having me around: that was you, too, wasn’t it? You pushed and pushed with such excruciating force until that stupid conviction became my reality. As did tears, insecurity, and a lack of reassurance I desperately needed. In high school you hid behind black skinny jeans, punk rock band t-shirts, and an eating disorder that wasn’t glamourous like in the movies. You danced around obsession, meticulous numbers, and crippling self-judgment. This is my reality, and the reality of millions of other people. And we are being ignored.

 

What if our society ignored the number of people who suffered from cancer each year? What if we claimed that cancer wasn’t real and its effect on lives was simply a conjugation of one’s imagination? If we stigmatized this illness, how would it impact those 15 million Americans who live with it? How would it make them feel? We don’t ignore those battling a physical illness because it’s usually easy to see how they manifest, yet mental health disorders can be harder to see and are thus treated differently.

 

The number of people who live with cancer every year is equivalent to the number of North Americans who live with social anxiety. That’s roughly 7 percent of our continent’s population. The disorder is more prevalent among teenagers and college students: an estimated 10 percent of college students suffer from significant social anxiety disorder, and general anxiety disorder affects an astounding 25 percent of teenagers. So why is the second most commonly diagnosed form of anxiety disorder is also so commonly overlooked? It’s challenging enough to live with a mental illness: its stigmatized reputation is an additional obstacle to overcome.

 

The stigma American society has so carelessly placed upon those struggling with social anxiety is rooted in insensitivity and judgment. The ignorance that drives this stigma not only discourages people from seeking help but attempts to convince them they have no problem to begin with. The pressure to break out of the shyness and nervousness becomes debilitating. When someone is repeatedly told their struggles don’t exist or their social awkwardness is just something they need to suck up and get over, we begin to believe it. I know I did.

 

My social anxiety made me question all the wrong things. I questioned the value of my curvy physique. I questioned my ability to be alone for hours at a time and not crave any verbal exchange. I questioned why people assumed I was so shy when I didn’t raise my hand in class, even though I always knew I had something to offer. At the time, I didn’t know what kept restricting me. I had questioned why everyone I knew was making friends at college, while my “friends” kicked me out of their roommate pool instead.

 

My first semester in college drained me. The pressure of constant socialization and having to present my best, bubbly, and agreeable self to everyone I confronted took a toll on my mental health. If I was anything but outgoing and always eager to go out on a weeknight, I was afraid my worst internal fear would come true—people would only pretend to be my friend because they felt a sense of pity towards me. I spend an exorbitant amount of energy and time rehearsing what tone I would use to respond to my name during attendance call in class, or considering which shoes would make the least noise when I walked into a 300-student lecture. One night my roommate asked me to make a phone call to the resident hall janitor because our window was jammed. I knew exactly the look I shot her, one brimming with such nerves and astonishment that makes someone wonder if they’ve suddenly sprouted a second head. She stared back at me quizzically and within seconds quickly muttered, “Never mind, I’ll do it.” The conversation ended abruptly. Why couldn’t I do it? Social anxiety.

 

But now I know it’s you, anxiety. Things make sense now: why I overthink the most basic social interactions, why I can’t present an accurate first impression no matter how hard I try, and why making friends is a hurdle I never fail to trip over. I need constant reassurance from the people in my life that I matter to them; that they want me to be there, and I haven’t just shoved my way in. I understand now that you are the driving force behind that heavy weight of insecurity that has travelled with me throughout my first year of college. But I want you to know that I am not afraid of you. Coming to college has given me the courage to speak openly about the daily challenges you provide. Because of you, I have discovered my passion of advocating for mental health awareness. I have overcome my eating disorder. I have made a friend or two, and I’m working on making some more. Thank you for being a constant in my life, dear social anxiety. Yes, you are a piece of me. But if you think you are going to define me, you are so painfully mistaken.

 

Mikayla is a sophomore at Boston College studying Communication with a minor in Management and Leadership. She is an active writer for Spoon University, an online food publication, and also enjoys playing guitar and spending time in New York City.



A Sense of Purpose: Turning Grief Into Action

 

Another Conversation with Robyn Houston-Bean, Founder and Director, The Sun Will Rise Foundation

 

 


 

In our first interview, Robyn shared how the support from her grief counselor, her friends, and her support group had all helped to hold her through her darkest months after her son’s overdose. Nearly a year after his death, she discovered that community action was her path to healing, and started her own support group in Braintree, MA. Soon she launched The Sun Will Rise Foundation. Her insights about how support groups and community service can empower us after a tragedy sparked a whole new conversation.

 

Val: Can you describe what gave you a sense of purpose a few months after Nick’s death?

 

Robyn: After a few months of grieving, I attended an event with a group called Hand Delivered Hope that does street outreach for those living with active addiction and who call the streets home. Joining in with other families and feeling so welcomed and accepted, it suddenly struck me that I had a sense of purpose: My child was not here anymore, but I could help another child. Although my Nick wasn’t here, someone else’s child needed my love and support. This warm, friendly group and others, such as Let It Out and The Boston Grief Group, inspired me and gave me strength to start my own group in Braintree. I knew we needed a grief support group closer to where I lived because I finally realized the scope of all this grief out there in the world. It’s so important that support groups are convenient for local people to meet and come together easily. We need people to understand us and validate our feelings, so we don’t have to make excuses for our tears and our laughter.

 

Val: I would love to learn more about how helping others is healing for you.

 

Robyn: To put it simply, helping others helps me. I know that if I didn’t go down the path of helping others, I would be at a different place with my grief. Helping others forces me to step out of my own pain and hear and feel the grief of others. The group members are so appreciative to have a place to put their grief. Nick was so compassionate and caring, and each time someone is helped with our group, I know he is smiling down on me.

 

Val: It amazes me that you went straight to the Braintree Town Hall to ask about starting a support group. How did this happen?

 

Robyn: I knew a person who worked for the mayor, so I floated the idea of having a group at the town hall. Right away that person thought it was a great thing for our town to do. What a perfect way to say “no” to the stigma about the opioid crisis by having this group right at the Braintree Town Hall! After the group was going for a while, we had our first fundraiser for the foundation right there at the town hall. We have been lucky because not all communities have embraced the idea that substance use disorder can happen to anyone, and that we all need to work together to help prevent it.

 

Val: What was it like learning to be a group facilitator?

 

Robyn: I doubted myself very much at the beginning, but I received such great support from some of the facilitators. My doubts were erased very quickly. Figuring out the logistics, learning about facilitating, getting the word out so people in grief could find a tribe—all this kept my mind busy and kept me going in the early days.

 

Val: How is having a purpose contagious with other families affected by the opioid epidemic?

 

Robyn: I'm amazed how powerful it can be when people who are usually on the margins are given a voice. Grieving is hard enough, but on top of that, it’s a stigmatizing death, and it can cause people to focus inward and avoid dealing with day to day life. It can cause grievers to be left alone in their grief by friends and a community that doesn't know how to deal with loss. Being part of our community, a place where people are safe to explore their feelings no matter what, a place where we can share anger, confusion, sadness, hopelessness, guilt and not be judged is a powerful thing. Having someone there to say, "Me too, I've felt that way" can really make a huge difference in our lives. Once you know you aren't alone, that there are hundreds of people out there who have felt your pain and have survived-- not only survived but lived again after loss--can be an incredibly healing realization.

 

Here are some ways that support groups have helped to turn grief into action:

 

  • - People build new friendships.
  • - They advocate for change in their own towns.
  • - They work to change laws.
  • - They gather together in prevention activities.
  • - They support the newest members of the group.
  • - They find their voice again. I'm so glad the people who led the path before me gave me my voice, and that I have played some small part to help others find theirs.
  •  

    Val: Robyn, you have been so generous with your passion and wisdom. Thanks so very much for all you have done.

     

    Robyn: Thank you for giving me this opportunity to talk with the Health Story Collaborative.

     

     

     

     

     

    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. Keep up with Val at www.theArtofComforting.com.


    Wildfire: A Story About Addiction

    by Shannon Lally

     

    My mistakes are like wildfires: disfiguring the entire landscape, forests turned black and flat and charred beneath my feet. After something like that, people will always look at you like a walking natural disaster, always smell the air for smoke. I would do anything to take it back, to just pop the cap back on that bottle and move on with my life, but that didn’t happen. There’s that saying about something being a tough pill to swallow, but I guess I never had that problem. Pills were easy. Too easy.

     

    The summer before I started high school, my dad and I moved to a small town in rural Oregon. It was deceptively picturesque, with a historic downtown and snow-capped mountains lining the horizon. My dad said it looked like a Christmas card, but to me, it felt like a snow globe. “Come on, it’s a fresh start in God’s country. It’ll be good for us,” he said. I knew the divorce hadn’t been easy on my dad, but this didn’t feel like a fresh start. It felt like a life sentence.

     

    The town felt barren. Untouched. Lonely. Of course, there were other kids my age in the town, and I went to school with all of them. You’d think this would help with the overwhelming isolation, but it had the opposite effect. Throwing together a few hundred chronically bored, desperate-for-trouble teens is about as good of an idea as it sounds. It became us against the world, a case study in desperation and mob mentality. Without that anger and desire for more, what did we have? There was nothing for us to look forward to besides escape. Every day in that tiny school and that tiny town felt the same, like we were living in a time loop. It would almost be cool, like a science fiction movie, if it wasn't so abysmally boring. So we determined that if we couldn’t get to the outside world just yet, we would bring the outside world to us. Like the stupid kids we were, we thought the outside world was like one giant rager, so we threw some pretty killer parties. I never understood how the word “killer” could both mean something good and bad at the same time. Now I do.

     

    Flash forward to a Friday night sometime during my senior year. We had survived yet another week of classes and teachers and homework; graduation was just around the corner. We were so close to being done. So close. Naturally, we decided to celebrate the only way we knew how: we threw a party. We kept the house dark, the music loud, and the blinds drawn. For those few brief hours in whoever’s house we were crashing that weekend, we weren’t trapped in rural Oregon. We were living in L.A. or New York or some other far away city. Our hearts slammed inside our chests, echoing the beat of the music and chanting for more, more, more. For those few brief hours, we were free.

     

    Freedom has a price, though. That’s the part they skip in the movies. The characters have a crazy night, something goes wrong, chaos ensues as the characters try to fix whatever sticky situation they had gotten themselves into, the problem works itself out, and the characters laugh about it afterwards and have a sentimental moment. Cue happy music. Roll credits. The end. That’s not how it happens in real life. That night, we made a mistake. We started a wildfire. The moment my friend switched out a beer bottle for a pill bottle, I should have known to walk away. I should have said no, but that night, I felt invincible. I thought nothing would hurt me, not when I was so close to my life finally starting. I looked around at all my friends, drunk and high and so alive, and I took one. Oxycodone didn’t sound scary, not like heroin or cocaine or meth. They gave it to kids when they got their teeth pulled, so how bad could it be? One pill wouldn’t hurt. I had stopped saying no a long time ago.

     

    If only I had known that one pill would turn into a habit, and a habit would turn into a full-blown addiction. Soon, I had pills in my locker, in my car, in my bookbag, in my purse. Any space I inhabited on a regular basis became my drug cabinet, my hiding place. It became increasingly difficult, however, to keep my addiction going. I was in high school, and my dad would be furious if he found out. I didn’t have nearly enough money to keep buying the pills I wanted—no, needed. I found myself at a new low.

     

    Hooked on the high and stupid enough to keep my problem a secret, I used up the last of my money from my summer job and bought heroin for the first time. It was from a kid at my school; the deal was cheap and quick. The needle was intimidating at first, but not as scary as the thought of withdrawal. The tremors, the sweating, the chills, the pain. Itching for a high in the tiny bathroom attached to my bedroom, I closed my eyes to not focus on the pinch of the needle. I didn’t think about what would happen once this high wore off. I just let the wave of euphoria wash over me and felt a sudden calm. Looking in the mirror, I could see my first bruise already beginning to show. I changed into a sweatshirt before my dad came home. I would wear long sleeves for years to come.

     

    If taking oxycodone for the first time crossed a line, shooting up with heroin for the first time obliterated it. Every day, the drugs worked less and less, and I had to buy more and more. I was covered in bruises. Anywhere that could be hidden with jeans or long sleeves was a canvas of blue and brown bruises and puncture marks. If there was anything drugs taught me, it was that I was a good liar. It seemed I could hide anything from my dad. Until three years later, when I finally hit rock bottom.

     

    I was in college. I mean, I was enrolled in college, but I rarely even showed up to class. My grades were slipping and my attendance was a disaster, but I could never seem to make it through the day. Not without getting high. I’d gone home early that day, exhausted and ready to add another bruise to the collection. If I had counted how many times I had felt the sting of a needle, it probably would have been enough to have given myself a full tattoo. One minute I was in the bathroom, pulling my sleeves down to hide the shameful thing I had just done, and the next, I had stumbled into my room. I laid down and closed my eyes, which is apparently how my dad found me. Prone. Unresponsive. Barely breathing. I woke up a day later in the hospital, my dad sitting next to the hospital bed with his head in his hands. He lifted his head and looked at me, my eyes red and bloodshot. He didn’t say anything. He just looked at me. I told him it wasn’t his fault, but I could tell he didn’t believe me. He felt the burden of my secret as much as I did. He sat there and looked at my arms, a stark picture of my addiction. He checked me into rehab the next week.

     

    Rehab was not like the hospital. The hospital was cold and smelled like rubbing alcohol and formaldehyde. It was sterile and felt like death. Rehab, on the other hand, was filled with warm colors and art classes and friendly faces. Withdrawal felt like dying, but at least it wasn’t death. It was resuscitation. Revival. Resurrection. I left a month later detoxified and rejuvenated, ready to pick up the pieces of my life and live as if that night at that fated party never happened. Too bad good things almost never last.

     

    I would overdose three more times. Each time, my dad sent me back to rehab with a little less hope in his eyes. I had given up a little, too. During my fourth stint in rehab, I met Rachel. She was nineteen, bone thin, and pregnant. It turns out that if you do heroin while you’re pregnant, the baby gets addicted, too. If the mom tries to go cold turkey and stop feeding her addiction, the baby also goes through withdrawal and can die. So there sat Rachel, medicated on methadone and just waiting until her nine-and-a-half month wait was up so that she could get her act together. When I asked her about her situation, she said, “If it was just me, I probably would have never gotten clean. But it’s not just me anymore, and Child Protective Services can get involved at any time. My family doesn’t think I’ll make a good mom. I need to prove them wrong. I just made a mistake. It was one time.” It was this heartbreaking admission that made me see that if I didn’t get clean, I could be in Rachel’s shoes in five, ten, maybe fifteen years. I could never drag my kids into this. Never. That was my last trip to rehab. I never touched a needle again.

     

    Five Years Later

     

    “And that’s how I got here. I’m almost five years clean, and I’m finishing community college in a couple of months. I already have a job lined up after I graduate.” Claps and congratulations filled the room as I announced this news, a success story that the other recovering addicts in the room could aspire to. Heroin Anonymous had taken up my Monday nights for the past four years, and in every meeting, I attended I felt like I was earning my place back in society. Rachel sat across the room with her daughter, who was fast asleep in her lap. I wondered if Rachel would ever tell her what these meetings were, who she used to be. My father sat next to me, smiling and proud of my recovery.

     

    It is true that some mistakes are like wildfires. They burn down everything that was once familiar, and you are left with only the ashes. But that’s the incredible thing about wildfires: after the flames have died down and the heat no longer persists, the scorched ground becomes green again. Life always finds a way. Things grow back. It may never be the same, but it sure is something worthwhile.

     

     

     

    Shannon Lally is currently pursuing a double major in Psychology BS and English with a concentration in Creative Writing. After college, she hopes to pursue law in a creative field, such as book publication.

    Breaking Through the Isolation of Grief

    An Interview with Robyn Houston-Bean, Founder, The Sun Will Rise Foundation

     

    INTRODUCTION

     

    Robyn Houston-Bean lives in Braintree, MA, and manages an insurance agency for four days a week. She is married to John Bean, a sheet metal worker, and has a daughter, Olivia, age 25, and a son, Jake, age 21. Amazingly, around her demanding business and the needs of her family, Robyn runs a dynamic, fast-growing organization, The Sun Will Rise, dedicated to serving families affected by the Opioid epidemic.

     

    Three years ago, Robyn’s oldest son, Nick, died of an opioid overdose. Just one year after his death, finding a way to channel her grief, Robyn began building her foundation in honor of her son, and soon engaged hundreds of families with support groups, inspirational talks, and fundraising events.

     

    I wanted to understand how Robyn was able to express her grief through community activism, and more deeply, to explore how she found comfort, understanding and support for her grief.

     

    One grey morning in February, I enjoyed a rich, two-hour interview with Robyn. Her candid insights about how grief isolated her, and what it took to break through isolation and turn to others was a powerful story in itself. She didn’t hold back from “going there” to describe her first devasting weeks after Nick’s death. Her story is so compelling and important that I have written her interview in two parts. Part One is about how she broke out of the isolation of her grief. Part Two is about her healing adventure of developing her foundation, The Sun Will Rise.

     

    Right at the beginning of my conversation, Robyn made one thing quite clear: We don’t ever “get over” nor completely recover from our child’s death, but hopefully, we learn to live with loss—and if possible, find a sense of purpose to guide our grief. For Robyn and many who support her work, community activism for facing the opioid epidemic has given devasted people a sense of meaning, purpose and belonging.

     

     

     

     

    INTERVIEW

     

    Part One: Breaking Through the Isolation of Grief

     

    Robyn didn’t hold back from “going there” to describe her first devastating weeks after Nick’s death.

     

    Val: Can you describe the early stages of your grief—starting at the point you think it’s best to start?

     

    Robyn: First, I should tell you about the night before he died. I’ll never forget the night before Nick overdosed. Strangely, out of the blue, before Nick came home from work, my daughter, Olivia, said, “I have a bad feeling about him.” As soon as he got home, he walked straight to the fridge. When Nick put his face into the fridge I made him look at me because of my daughter’s feeling that something didn't seem right. I put both my hands on the sides of his face to make him look at me.

    I asked, "Are you okay?" He told me, "I'm just tired-- I'm going to bed, why?" I answered, "Because I love you, and don't want anything to happen to you.”

    He replied, "I love you too. I'm tired and going to bed. I have to be up for an early shift." It still haunts me that I didn't know something horrible was going to happen that night.

     

    The next morning as I was headed out to the gym for my usual workout, I was surprised to see Nick’s car in the driveway, as he usually drove to work on the early shift. I wondered, why was Nick’s car still there? I called upstairs towards his room, “Hey Nick, are you up there?” It seemed so weird he was not answering as he was such an early morning kind of guy. I went to his room and found him lying motionless in his bed, cold and blue. I tried to revive him with Narcan but I could tell it was too late. I screamed a horrible, guttural sound—a sound I have never made in my life. Still, my daughter called 911. The EMT and police came and took him to the hospital, but he was gone.

     

    Val: What a horrible shock—to be the one to find him dead right at home. Before his death, had there been any signs that you sensed Nick was using again or hiding anything?

     

    Robyn: Not really. It was such a shock, and there really are no words to describe this kind of shock. He was doing so well and so proud of his new job as an Emergency Services Technician. He had just finished his certification and was feeling a real sense of purpose and mission in his life. He told me almost every day how he loved his work and loved being so helpful for others, saving lives. But…perhaps, he saw too many awful things during emergencies and rescues, and maybe some things had triggered him. I will never really know.

     

    Val: What were those first weeks or months like for you?

     

    Robyn: Everything just stopped. I just stopped. All I could do was sit on the couch. I had always been a super-energetic person who loved fitness competitions and worked hard to be the best at anything I wanted to do. I was once the unstoppable, super-achieving woman who never looked back.

    But when Nick died, I didn’t know how to be me anymore.

     

    Unfortunately, my husband and youngest son didn’t know how to relate to this person I had become—this woman who just stopped everything. And my friends tried to text me and chat to cheer me up. But I couldn’t do chit chat anymore. My daughter could understand somewhat, but she was my daughter and was grieving in her own way. For me to grieve, I needed to have some of Nick’s things around me on the counter by the kitchen—his little harmonica, his coin collection, little pins he wore, his pocket knives, but this bothered my husband to the degree that this caused arguments. He didn’t want to talk about the death of our son or look at Nick’s stuff because he just wanted to push the memories away to get through the day. I was the total opposite from him in how I grieved. There was an awful tension between us. I felt lonely with my grief because no one in my family could understand how I was grieving as a mother. And I was anxious that my friends were trying to fix me and get me to socialize or get back to the gym. No one seemed to accept that the person I was before Nick’s death—that once unstoppable Robyn-- no longer existed.

     

    Val: It sounds so isolating for you. No one in your family is the right person to talk to, and your friends don’t seem to understand how to relate anymore, even though they are trying. What in the world did you do?

     

    Robyn: I had a gut feeling that a grief counselor might help me. For a referral, I asked a pediatrician I liked for years (who had treated my kids when they were younger.) He gave me the name of an excellent therapist, and fortunately, I felt comfortable with her. I opened up and shared everything with her. I was especially concerned about how to cope with my husband and children who weren’t grieving in the ways I was. A few weeks later, I asked my husband and kids to join for family therapy. They weren’t too thrilled about it, but they cared enough to go for a few sessions. I was relieved this therapy resulted in finding a solution to how I could have Nick’s things around me without this upsetting my husband. We decided to put Nick’s little things in a box on the counter, so when I wanted to connect with Nick I could just get his things out of the box and then put them away. Believe it or not, this simple solution made a huge difference for me and my husband!

     

     


     

     

    Val: Wow. I love what you just said. And what a perfect solution to use the box for Nick’s things.

     

    Robyn: Eventually my daughter, Olivia, started going into the box, getting out his harmonica and coin collection, and sharing memories about Nick with me. But still…I had a long way to go to get used to my new normal without Nick in my life. Indeed, we all had new normals without Nick in our lives.

    But one day a thoughtful friend connected me on Facebook with a friend of his named Carole who had recently lost her child to an overdose. Very soon we were talking on the phone. We could “go there” with the horrible things that no one else could talk about. For our first face-to-face meeting, Carole met me at the cemetery where both of our kids were buried. Can you believe it—both of our kids were in the same cemetery lying near each other! We sat on the grass and cried together. We made a pact with each other that we would “take care of our kids” every day by going to the cemetery every day. We agreed that no one could rob us of our grief and the time we needed to “take care of our kids.”

     

    Soon another friend connected me to other grieving parents through Facebook. In a few months we found out about an organization called Hand Delivered Hope, a group of concerned citizens affected by the opioid epidemic. This group provided street outreach to people who have been impacted, meeting their basic needs so that recovery was possible. Hand Delivered Hope had organized a benefit event where participants were bringing bags of comfort items. My sister and I attended this event, and to my surprise, I made friends easily with other parents and family members who had lost loved ones or had loved ones still struggling. I didn’t feel judged or that I had to censor myself from talking about messy and awful topics related to addiction. They busted through the stigma of addiction as I was accepted and welcomed. They asked about Nick, and how I was coping with my grief. They shared their own stories about broken relationships and how their kids were destitute, misguided, broken, or had died through an overdose. It was a safe place to talk honestly as a group, and I immediately realized how healing it was to have this open, warm environment where I could be a grieving mother—rather than trying to be that unstoppable, super-achiever person I used to be. This experience of feeling so welcome with my grief was a big turning point for me.

     

    I had a huge revelation, and it all came down to this: My child was not here anymore, but I could help someone else’s child. And I could help someone else who was grieving to feel warmth and acceptance. Braintree needed more support groups, fundraising events, educational events, and resource development. Soon after my revelation, one thing led to another. I met another wonderful friend named Rhonda who was involved with a grief support group at GRASP in Brighton. She told me there was no grief support group on the south shore of Massachusetts. And things started moving from there—it was my calling. I believed I was the one to do this


     

     

     

     

    Val: Thankfully, you found a group where you didn’t have to hide your grief, and that inspired you to start your own support groups. What about your older friends? Did they fade away? Or were you able to maintain those friendships alongside the new friends you were making?

     

    Robyn: Yes, I have been able to keep most of my old friends. I finally managed to figure out how I can fit my old and new friends in my life. First of all, these two groups of friends are two separate groups. I call my old friends my “before” friends (before Nick’s death) and my new friends my “after” friends. The “after” friends definitely “get me” more easily and I can talk about the good, the bad and ugly stuff with them. However, I truly love my old friends and I tend to do more fun and lively stuff with them—which is just fine for short periods. I don’t want to be a “downer” with my “before” friends. My “before” friends still want to see me laugh and socialize, and I’m able to do that on some occasions. I must admit they can still make me laugh. I am glad to have both groups in my life. But I couldn’t live without my “after” friends.

     

    Val: Robyn, what a creative way to make room for all your friends in your life. That also sounds like a beautiful way to embrace your “before” self with your “after” self.

     

    Robyn: Thank you for saying that. It’s all taken a long time.

     

    This concludes Part One of my conversation with Robyn. In my next post on the Health Story Collaborative, Robyn will share her healing journey with developing The Sun Will Rise Foundation.

     

     


     

     

    Recommended Resources

     

  • Robyn’s Foundation, The Sun Will Rise
  • • Team Sharing Inc., a national organization of parents who have lost children

  • GRASP: Grief Recovery After a Substance Passing
  • Hand Delivered Hope, Boston
  • The Opioid Project, created by Annie Brewster, MD, and artist, Nancy Marks
  • Robyn Talking about Her Son, Nick, recorded on the Opioid Project

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