Harnessing The Healing Power of Stories

 

Health Story Collaborative Blog

Harnessing the healing power of stories...

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

  •  

    A Voice for the Vulnerable

     

    Using Storytelling to Unite the Sick and Healthy on College Campuses

     

    By Heena Nissaraly and Evelyn Caty

    Elaine Scarry, Harvard English professor and advocate for narrative medicine, said: “To have great pain is to have certainty; to hear that another person has pain is to have doubt.”

     

    We can never truly know what someone else’s pain feels like, or truly understand another’s experience with illness or injury. But we are mistaken if we think that this gives us reason not to try.

     

    As two sophomore Nursing majors and Medical Humanities minors at Boston College, we feel a personal responsibility to give voice to stories of pain—including the suffering associated with physical, emotional, and mental illness and stress we have heard from our peers. We also feel called to elicit and validate the stories of pain which haven’t yet been told. Many suffer silently every day on campus, and our hope is to provide space for these people to share their stories and thus feel less isolated.

     

    “Underheard HSC” (@underheard_hsc), the Instagram account we’ve launched, is dedicated to sharing anonymous short health stories and art pieces by and from college students. It aims to make stories of illness, disability, and loss in college more accessible to the students facing these challenges, to encourage those who aren’t naturally inclined to write about their experiences to share their stories, and to help those who haven’t experienced such challenges to join in conversations about health and illness with those around them.

     

    In college, there is great stigma around diseases or injuries that are considered unusual in our age group. We are expected to be young, strong, and resilient to whatever comes our way. This presumption of healthiness makes it challenging for those who undergo debilitating illnesses to express themselves. When these experiences are under-discussed, it leads to misunderstandings about the reality of being sick, and about how to best respond to and care for those around us who are experiencing these challenges. For this reason, we are particularly interested in reaching college students through our work as interns at Health Story Collaborative.

     

    Our hope is that Underheard HSC becomes a space where young people feel less alone in their pain and comfortable enough to submit quotes or short stories about their own health.

     

     

    Each of us has or will deal with health challenges in our lifetime. It’s time to start talking about it. By taking the time to listen to and express care for the stories of our peers, we will not only be showing them kindness, but we will also begin to make space for a kind of storytelling which can lead to emotional healing. Our greatest ambition is to inspire better communication and deeper human connection. We hope that this platform welcomes students to share and serves to validate and honor every health story.

     

    Supporting unique projects and starting new conversations can sometimes be scary, but the barriers to discussing the difficulties of illness which we have comfortably hidden behind until now are the very reason we must take a leap and open our minds to the infinite stories of illness and pain existing around us. Please join us in taking a small but important step in showing our peers that we care: follow @underheard_hsc on Instagram.


    For questions or to submit a story, please email Evelyn and Heena at hscinterns@gmail.com.

     

     

    Heena Nissaraly is a sophomore at Boston College majoring in Nursing and minoring in Medical Humanities. She aims to become an empathic nurse specialized in anesthesia or hospice care, and hopes to eventually improve healthcare in Madagascar.

     

     

     

    Evelyn Caty is a sophomore at Boston College majoring in Nursing and minoring in Medical Humanities. She discovered for herself the utter inexpressibility of pain when she suffered from undiagnosed back pain for many years, and she hopes to use this knowledge to encourage her peers struggling with health challenges to begin healing through the telling of their own stories. She, too, hopes to use her passion for the medical humanities and for storytelling to become a compassionate and effective nurse.

     


    Medical Student Voices: Keep it Moving

    By Juliet Musabeyezu

     

    “Med School is hard,” she said.

    Hard could mean just about anything.

    Is it like moving-across-the-world-hard?

    Or Is it like a bad-breakup-hard?

    “Med School is like a marathon,” she said.

    What is running a marathon like?

    I’ve never run one before.

    But I know they require stamina.

    Stamina I don’t have.

     

    “Med School is like drinking water from a fire hydrant,” she said.

    Why would you even do that?

    Do you have other options?

    Would you have to drink it all?

    Or would one sip do the trick?

     

    Weeks later, after beginning Med School myself,

    I would say: “Med School is compartmentalization.”

    You see dead bodies. You do things to dead bodies.

    Things you would never do in real life.

    Things you find hard describing to your mother.

    You do them anyways.

     

    Because you have to keep it moving.

    Weeks later, I would say: “Med School is fake intimacy.”

    Your patients tell you stories.

    Intimate and personal ones.

    You want to know everything.

    How did they feel? What did they do?

    Why did their cousin twice removed leave her children behind?

    Instead, you say: “That must be hard.”

    Because you have to keep it moving.

     

    Weeks later, I would say: “Med school is like something you’ve done before, but different.”

    You’re starting over with new people – odd new people.

    You’re told you now belong to a profession – wait, what?

    You try to learn what you need to know – you fail at it.

    You feel a little numb.

     

    You somehow manage to keep it moving.

     

     


    Juliet Musabeyezu is a first year medical student at Harvard Medical School. She was born and raised in Kigali, Rwanda and has spent the last few years doing Global Health work in Rwanda and Liberia.

     


    What I learned in the Haitian Batey: Reflections from a dentist-in-training

     

    By Rachel T

     

    The fact that Dominicans of Haitian descent are treated as foreigners in their own country was hinted at before we even arrived on the island. Contemporary Haitian immigrants to the Dominican Republic and prior generations experience racism and economic exploitation on a daily basis. Our Global Health service trip team was mostly white, so this discrimination would not affect me or many of the other students. However, a black girl from New Jersey was warned that if our guagua (bus) was stopped while in transit, she would likely be asked to step out by military personnel in an effort to control immigration from Haiti to the Dominican Republic.

    Luckily, we avoided this situation, but during my week on the island I observed many occasions of blatant racism that interfered with healthcare access for Haitians.

     

    Each day our team traveled into “bateys” – communities – outside of Monte Cristi to support the local health center and their mission of guaranteeing patients the right to health. In the early 1900s, banana companies established bateys for the Haitians and Dominicans who worked the fields during the day, to provide them with a place to stay overnight. Many banana companies have stopped supporting the bateys, making life extremely difficult for those who live there – fruit pickers have been left without the means to support their families, and the economy suffers.

     

    While I witnessed impoverished living conditions in all of the bateys, the Haitian batey was the most disadvantaged by far. We arrived at 7:00am to the abandoned banana packing plant and quickly transformed the area into a clinic. 30-40 patients were already lined up. Many of them had walked miles. Some of them had no shoes. Others were carrying one child on their back and another in their arms. I quickly gobbled down my granola bar while huddled over; in hindsight, I should have eaten it on the bus beforehand, away from the patients, considering many of them don’t have such easily accessible food.

     

    As a pre-dental student, I had been assigned to spend the morning helping the dentist and her assistant. What struck me most were the Haitian children’s reactions to seeing the dentist, or lack thereof. In the U.S., it is not unexpected for a child to tantrum when propped up in the dentist’s chair. They clench their teeth closed and turn away from the approaching dentist’s hands. They cry for Mom or Dad whenever it’s deemed safe to open their mouth and howl. In contrast, not once at the pop-up clinic did I see a Haitian child fight the dentist. Not once did I hear them scream at the top of their lungs. Instead, often there without a parent, the child would lie on the chair with his or her mouth wide open, totally vulnerable, and not make a move or a sound. The dentist would scan and scrub and scrape, and then the child would sit up, lean over the side, and spit a mouth full of blood and plaque into a cardboard box filled with dirt. There were no stickers to reward their bravery or high fives from Mom or Dad. The kids were sent off with the only toothbrushes we had (boring adult ones instead of the fun, cartoon-themed ones often handed out in the U.S.), and started the long journey home.

     

    I also experienced the impact a language barrier can have. Communication is perhaps the most important element in building a positive doctor-patient relationship. My day in the Haitian batey where everyone spoke Creole reminded me of this. Not being able to greet, instruct, or comfort these patients made me feel helpless. I still remember a middle-aged woman who let out groans so deep I couldn’t help but furrow my brow as I imagined her pain.

     

    “¿Qué le duele? / What hurts?” I asked. It was challenging enough to understand the woman’s response as she gritted her teeth and whimpered in agony, but when she answered in Creole instead of Spanish, I was filled with frustration. The language barrier made it difficult for me to clearly listen to or readily comfort her. Fortunately, we had a team of translators helping us. They translated from Creole to Spanish, and then another group translated from Spanish to English. Nonetheless, there was no way for us students or the non-Creole-speaking American doctors to directly communicate with her. I found this to be extremely limiting in assessing complaints and prescribing medicine.

     

    As a pre-dental student majoring in Spanish, I hope to one day be able to combine my passions in order to communicate and empathize with both English and Spanish-speaking patients. My week in the D.R. affirmed the value of incorporating a Spanish language education into my dental career. Had the groaning woman spoken Spanish, I could have reassured her: “You were right to come here. Everything is going to be ok. We are going to help you.”

     

    My week in the Dominican Republic ignited in me a desire to fight for equal access to healthcare worldwide. I will never forget the struggle of those who live in the bateys. Indeed, they will inspire me as I continue on my journey, and I hope to return one day as a practicing dentist. Until then, I plan to serve in my local community, as great disparities also exist in our own backyard.

     

     

    Rachel is a junior at Washington University in St. Louis, majoring in Spanish and minoring in medical humanities. She aspires to practice dentistry and cultural humility in a medically underserved area.

     

     

     

     

    Read more College Student Voices here.


    Medical Student Voices: When the Best Prescription is Not to Cure

    By Emma Meyers

     

    The unit is separated from the outside world by two pairs of locked double doors. A blinking green light and a soft beep herald our passage through them into a no-man’s-land where a guard sits, patiently unlocking the doors as we come and go. When I enter the airlock the first morning, hang my coat and stow my backpack, it feels as though I’m in a sci-fi movie, an intergalactic explorer awaiting my first excursion into the uncharted expanses of space. The atmospheres equilibrate and, I will soon learn, norms are stripped away, decompressed. Not sure what to expect, the door chirps open and I step into my month-long rotation on the inpatient psych ward.

     

    Each morning, residents, psychiatrists, nurses, social workers, and I pile into a tiny, windowless room with chairs pushed up against the walls in two rows facing each other. I am the only medical student among them, a wide-eyed interloper squeezing into a center chair. Patients are led in one by one to sit beneath a watercolor painting of goldfish in a pond while we ask them things like, “How is your mood today?” and “Did you need your Zyprexa to sleep last night?” A pleasantly psychotic woman, untroubled by her delusions of being a powerful real estate lawyer – she is homeless but insists that her office has faxed her discharge paperwork – doesn’t seem to notice that I’m there. With fifteen or twenty minutes per patient and our elbows and knees bumping up against each other, these encounters are concentrated in time, in space, in feeling, and they leave me jelly-legged and dazed when I finally stand up hours later. Every minute I’m cycling through the full range of human emotion, from proud to sad to irate to hopeful. I fidget in my chair as tremulous patients beg for benzos. I hold back tears as a suicidal businessman crumples wet tissues in his bandaged hands. Sometimes I just stare at the goldfish and wonder if this is what it’s like to be crazy.

     

    One day a few months prior on a surgery rotation, I stood in the OR at the end of a long case, carefully running a subcuticlar skin closure.

     

    “You’re a natural.” The surgeon, arms crossed, looks over my shoulder.

     

    “What specialty do you want to go into?”

     

    “Neurology.” I watched the last stich pull the skin into a taught pink line the patient would remember me by.

     

    “Neurology?” She sounded confused. “But don’t you want to fix people?” Her jaw was tight and face serious.

     

    This was nothing new. From the beginning of medical school we are taught to diagnose and treat. We recite mnemonics for the acute management of myocardial infarctions, and can name first, second, and third line therapies for asthma. We titrate blood pressures to evidence-based levels, and feel weirdly satisfied when our heart failure patients pee after a dose of diuretics. We are taught to grow from the first year student who can report that something is wrong to the doctor who can do something about it.

     

    On the psych ward, my patients’ foggy insights clouds my own. I find myself in the thick of the confusion with them, trying desperately to “fix,” to “cure,” to achieve some venerated end I had been conditioned to strive for, and driving myself insane with an inexplicable rage when I can’t. A woman with a functional tic can’t accept that her problem is not the result of medical errors and refuses psychiatric intervention. A kind man with bipolar disorder and an addiction who got high and tried to crash his yacht tinkers with his medication doses and stares silently out the window at the sailboats dotting the river below. A deeply depressed attorney can’t allow himself to just feel sad. Seeing them every day is excruciating: each carefully articulated question I ask falls flat, and simple conversations quickly turn into circular back-and-forth’s that devolve to the absurd. Every day I feel like banging my head against the wall, and each night I drag home the weight that others can’t carry.

     

    Shelly* is 30-something, wiry, all clavicle and bony knees– breakable, almost – with thick glasses that magnify her round eyes and give her a permanently forlorn look. She wears Victoria’s Secret sweatpants with a black sweatshirt and Ugg boots, her long brown hair pulled into two braids that fall down her back.

     

    The night before her arrival, she had lined up her anxiety pills, her mutinous artillery of serotonin and GABA, in one last attempt to create order in her chaotic life, before swallowing them one by one. However, her final act of treason was interrupted, and she ended up with us. When we first meet, she is reticent, eyes downcast, giving up only a word or two in barely a whisper. But soon, she opens up.

     

    Two young women in a foreign land, we hit it off: she shows me the drawings she makes in the journal she guards tightly against her chest with crossed arms as she walks around the unit, and talks about seeing her dog when she gets home. She is tougher than her small frame lets on, both physically and mentally. After a week of dutiful CBT practice, she is deemed ready to go conquer her automatic negative thoughts on her own, out in the real world. On the last day of my rotation the two of us sit under the goldfish, talking about going home, about passing through the airlocked doors back to the outside world. Suddenly, her face clouds and she begins to cry for the first time since she’s been here. I hand her tissues.

     

    “What’s wrong?” I break the silence.

     

    “I feel like a failure,” she says through tears. “I’ve worked so hard, what if I’m not actually better? What if I go home and it all starts again?”

     

    I pause.

     

    “Well, at least you’re trying, right? That’s pretty good.”

     

    I watch her think about this for a moment, brow furrowed, tiny fists balled in her lap.

     

    “Yeah,” she smiles a little to herself, eyes looking thoughtfully at the floor. “I guess that’s something.”

     

    Back between the doors, I wait for the green light one last time. Four weeks, ten discharged patients, dozens of prescriptions, and countless long silences later, I don’t think I fixed anyone. I sat with them, though, through all the tears and all the tic-ing, and heard what they had to say. Maybe this is how we help: we shelter, we stabilize, we listen, and we together we take steps, however small. We may not always be able to fix. We may not know what happens when our patients leave the quiet of the pond for the rough ocean waves. But we try. Well, I reassure myself, I guess that’s something.

     

     

    * Name has been changed

     

     

    Emma Meyers is a third year medical student at Harvard Medical School. She grew up in New Jersey and graduated from Columbia University with a degree in neurobiology. She plans to do a residency in neurology. Outside of medicine, Emma enjoys art, reading fiction, hiking, cycling, and traveling.

     

     


    Read more Medical Student Voices here.

     

    Making the Grade: Brain Surgery as a Treatment Option for Refractory Epilepsy

    By Laura Beretsky

     

    I was sorting through the sea of email, when I saw the Epilepsy Foundation of New England’s posting in purple and black font: Epilepsy Support Group Beyond Medication: A Discussion about Surgery. Though my seizures had been under control for almost three years, I still reviewed the foundation’s notifications. I noticed immediately that all the panelists were medical practitioners. There were no patients on the panel, and I felt indignant about this oversight. They needed a patient in the room – somebody who chose surgery as an epilepsy-treatment option, who could answer patients’ questions firsthand. I felt compelled to be that person, and avail myself to whomever showed up, so I registered, lined up childcare, and marked my calendar.

     

    The event was held on a damp evening last spring. I took the subway to the Charles Street stop. As I navigated the streets in front of Mass General Hospital, I observed the traffic controller directing the EMT’s parking the incoming ambulances. I was struck by the sheer number of personnel required to deal with each traumatic predicament. As I watched, I was immediately brought back to the day I required emergency brain surgery: I had been rushed to this very place, where a neurosurgeon on call performed the operation. I thanked my lucky stars that day was almost three years behind me. Now I was at MGH by choice, on my own terms.

     

    The panel was held in a cramped nearly windowless conference room. I settled into a chair, and looked around the table. The MGH doctors were easy to spot in their standard white coats, and I recognized the third doctor from the Epilepsy Foundation’s website. The fourth practitioner was the nurse who was leading the meeting. The patient turnout was even smaller than I expected: There were four of us, one patient for each presenter.

     

    We each introduced ourselves and I learned that every patient in the room had already had elective brain surgery to try to control seizures. (So much for my good intentions of sharing the scoop on surgery with somebody who was on the fence.) The nurse gave a PowerPoint presentation, complemented by a three dimensional plastic model of the brain. She passed the molding around, and explained the basics about seizures and brain surgery, acknowledging that everybody in the room probably already knew a lot of this information. I suspected she was more disappointed than I was.

     

    The attendees’ demographics were varied – we represented different races, genders, and ages. Only two of us had full seizure-control – myself, and another patient whom I’ll call Marie - and each of us had two different brain surgeries a piece. Marie had initially had a vagus nerve stimulator installed, which entails inserting a silver dollar-sized pacemaker-like device into the upper chest that a neurosurgeon winds around the vagus nerve in the neck. When Marie’s seizures recurred, she resorted to a full-fledged craniotomy, which was successful.

     

    I first had an elective right temporal lobectomy in April 2014. I was seizure free for two months, until my brain imploded due to a subdural hematoma that had developed subsequent to the surgery. A subdural hematoma is like a giant bruise on the thick membrane under the skull, surrounding the brain. I’m still not sure why the hematoma developed. The neurosurgeon said it may have been caused when a vein in my brain got stretched during the temporal lobectomy. But it may have been brought on when I accidentally banged my head against the freezer door, while retrieving the ice cube tray. The emergency craniotomy was harrowing, and brought on a series of grand mal seizures – four in a week. Full recovery took over a year, as I had to take inordinate amounts of anticonvulsants, to control seizure activity. The medications made me lethargic, but over time I was able to titrate them down to something tolerable. Eventually I was both functional and seizure-free.

     

    My neurologist calls my story a success, which feels like a misnomer. While it’s true my seizures were ultimately brought under control, it seems misleading to call a procedure “successful” when it results in a grueling near-death experience. Yet as I listened to the others’ stories – those who had only had one brain surgery, and still had refractory seizures – I felt lucky. One patient also had severe memory loss resulting from the surgery. The other spoke of the disappointment that came with having his driver’s license revoked after the seizures returned. Their journeys are confirmation of surgery’s poignant fallibility.

     

    Brain surgery has a 70% success rate as a treatment option for refractory epilepsy, a percentage most teachers would call C minus. When you get a mediocre grade at school, there’s typically wiggle room to make it up – an extra credit assignment, or retake exam, perhaps. When brain surgery doesn’t work, the only possible option for a grade boost is a second surgery. At best this is a huge undertaking, beset with a multitude of invasive extensive pretests. Yet that is what the neurologist is likely to suggest to a post-surgery epilepsy patient who still has refractory seizures.

     

    When the panelists asked for feedback I piped up, “I think it’s surprising that everybody in the room has already had surgery. I expected there would be patients here with questions about surgery, but we’re all old hands at this.”

     

    “My patients think if they attend something like this, they’re committing to having surgery, and they’re not ready yet,” an MGH neurologist responded. “What advice would you give to a patient considering surgery?” she asked the group.

     

    “I’d tell them that if they’re brave enough to live with uncontrollable seizures, they definitely have enough chutzpah to undergo surgery,” I offered. “I’d tell them it’s a scary, taxing procedure, and no matter how good your doctors are, there’s a lot they don’t know. Also there’s no guarantee of success.” I looked at the others around the room – we were living proof.

     

    Perhaps the doctor would pass my insights on to her anxious patients. One thing I knew for sure: a doctor cannot convey the huge disappointment a patient feels if s/he goes through this procedure, and still has seizures. For the patient choosing brain surgery to treat uncontrollable seizures, there’s a 30% chance of that outcome, making it a significant gamble. They should make that wager only after they’re fully informed about the mediocre success rate, and the ample risks involved, as they are taking an enormous leap of faith. Hopefully, they will make the grade.

     

     

    Laura Beretsky is a writer who lives in Somerville, Massachusetts with her husband, children, and cat. Her poetry has be previously published in Poetry Motel, and The National Library of Poetry's Moment in Timejournal. She is currently working on a memoir about growing up and living with epilepsy.

     

     

     

     

     

     

     

     

    Guillain-Barre Syndrome - My Story

    By Penny Shaw

     

    In 2001, when I was 58, I developed odd symptoms in my legs - pain and weakness, falling on the sidewalk and unable to get up without assistance. I first went outpatient to my physician who had no idea what the problem might be. Nervous and living alone in an apartment, I carried my portable phone with me. One evening I fell and couldn't get up. I called 911 and the EMTs from my neighborhood fire station came and transported me to the ER of my Harvard-teaching community hospital in Massachusetts. The physician asked me to get up from the examining table and walk. I told him the problem was not walking, but falling. He found nothing wrong with me and sent me home. A few days later, at home, I fell again. I called 911, got the same EMTs, went to the same ER, was told nothing was wrong and was sent home again. Then I fell a third time. Having the same EMTs for all the three calls, they assured me that this time they would insist I be admitted. I was admitted but to the geripsych unit , as they believed I was making my symptoms up for attention! This scenario is well known in the disability community. If a physician cannot determine a medical cause for reported symptoms, the default position is too often psychiatric.

     

    I was placed into a bed and later an orderly told me to get up, as the psychiatrist wanted to interview me. When I told him I couldn't get up, he told me I was lying. After the interview, I asked to see a "regular" doctor. She came, had blood work done and later told me the results indicated kidney failure. She put me in the ICU, all the while I kept saying to everyone "It's my legs" to no avail. Retrospectively, I know my elevated creatine level indicated not kidney failure but evidence of a rare muscle disorder. After 3 days in the ICU without kidney failure, the team finally decided to listen to me. They did a muscle biopsy and told me I had Polymyositis. I was in a med-surg unit for a few days, commenting each evening to my attending "This is odd. My feet are paralyzed". Next evening "My ankles are paralyzed", Next day "My lower legs are paralyzed". Then I had complete respiratory failure and was in the ICU on mechanical ventilation for four months, not expected to live. A friend told me the medical team was frantic, not knowing what was wrong with me. Eventually, I was discharged to a respiratory rehabilitation hospital as I was still medically unstable. I stayed for a year. I was then discharged to a nursing home on a trach and feeding tube, where I have been living for 13 years. In 2006, I was decannulated after 5 years intubated, to the surprise of many.

     

    In 2010 I went for a consult with a Rheumatologist at a Boston teaching hospital where I was made a research patient. After 9 years, I got my correct diagnosis- Guillain-Barre Syndrome (GBS). The team concluded I have GBS based on three factors - my report of what I have since learned is called "upward progression of paralysis", the fact that Polymyositis is not a paralyzing disorder, and finally, by looking at the original muscle biopsy slides, where the inflammation of the muscle tissue was insufficient for a diagnosis of Polymyositis. Because of the failure to be properly diagnosed, I never had the opportunity for treatment of GBS in the acute phase.

     

    Today, I am in my 14th year as a nursing home resident due to quadriparesis, an inability to not only walk, wash, and dress myself, but also to cook and clean. I can use my hands in spite of the contractures of my fingers, and can brush my teeth, feed myself, turn pages of books, read, write and use a computer. My mind is intact. In 2011, I got a power chair which permits me to go outside when I want, after 9 1/2 years living inside facilities. I'm an accidental nursing home and disability advocate. In 2011, I read an article in the Boston Globe about the possibility of a nursing home bed-hold program being eliminated. This would have put me at risk, after a hospitalization, of losing my "home" and having to live in another facility, if my current bed were filled while I was away. I wrote a letter in support of retaining the program to our House Ways and Means committee. The letter was circulated and I was asked to become a state and national nursing home advocate. I am now an active nursing home, disability and elder advocate, nationally published writer, speaker and consultant. You can find some of my work by googling "Penelope Ann Shaw, PhD". I am leading an interesting, and hopefully useful, and fun life as a survivor of acute GBS. I enjoy my personal life immensely, mostly my lifelong friends who have supported me in every way during my medical journey.

     

    Originally published in 2016 by the GBS/CIDP Foundation International: “It’s Only Rare Until It’s You. Stories of Strength and Survival from the Guillain-Barre and Chronic Inflammatory Demyelinating Polyneuropathy Community”. Reprinted with permission.

     

    Penelope Ann Shaw, PhD, a doctor of French Language and Literature, is a former university faculty member and administrator of English Language Learning. Now a nursing home resident, she is on the boards of the Massachusetts Advocates for Nursing Home Reform, and the Disability Policy Consortium. Boston. She is a member of the disability patient access focus group at the Massachusetts General Hospital. Boston. She was named an elder trailblazer for Older Americans Month 2016 by the U.S. Department of Health and Human Services. Administration on Aging's Administration for Community Living.

     

     

     

    Breaking Out of the Isolation of Illness

     

    An Interview with Molly Stewart, Mission Services Director at the Cancer Community Center of South Portland, Maine 


     

     

    By Val Walker

     

    A Cancer diagnosis and treatment can be an isolating experience for many of us. I wanted to learn from Molly how a support organization like the Cancer Community Center could help us break out of isolation by fostering new friendships and a sense of community. On paper, of course, we could assume a community center was supposed to build connection, but in reality, I knew it was difficult to get people engaged after a life-changing illness such as cancer. What did it take to get people in person to bond again after a long period of being in survival mode and pain?

     

    Val: A Cancer diagnosis can be an isolating experience. Molly, what does it take to break through the isolation many of us go through?

     

    Molly: Breaking through isolation takes courage. After a cancer diagnosis, your social needs could change. And even though you know you need to take the first step, you might not even be sure what you’re looking for. You don’t know what to expect. It can take a lot of courage just to walk through our doors at the Cancer Community Center. And before you’ve walked through our doors, it’s taken courage to recognize you’re lacking support and want to do something about it. It’s not unusual for people to express surprise, disappointment or frustration with responses to their cancer diagnosis.

     

    Speaking of the courage to be open and vulnerable, I love the work of the author, Brené Brown (The Gifts of Imperfection, Braving the Wilderness). She writes beautifully about the courage it takes to show up for each other, and “letting ourselves be seen.” Stepping into our doors at the Cancer Community Center is a statement that we’re brave enough to let ourselves be seen, to be open and vulnerable. We hope that is a healing step—just coming to the Center.

     

    Val: It’s heartening to hear how welcoming you are for those brave enough to step through your doors. Are most people looking for the same kinds of connections and resources?

     

    Molly: It’s important to remember that everyone has different needs when it comes to social support. We’re each unique in what we want, and our social needs change over time. Some people coming to the Center are looking to expand their social network, and others just want a quiet, private space to talk with one another. Some people are aware that they lack social support and want to engage and make connections in the activities at the Center. Others may have enough support from family and friends, and want to talk with someone who has been there.

     

    Val: You offer classes, support groups, an individual buddy program, resources. What do you recommend for people living with cancer who feel fearful or hesitant about venturing into new connections?

     

    Molly: I encourage people to take small steps in getting out again. You might ask, “What am I looking for?” Pay attention and become more aware of the social aspects in all areas of your life— your physical, emotional, spiritual, financial, and occupational needs. Who is there in these different areas of your life? By just being aware, assessing and reflecting how people influence us or nourish us (or not), we can choose what is best for us as we resurface from isolation. I’ve studied social science research, and as humans we are wired to be social. We want to belong and feel accepted.

     

    Val: I believe strongly that anyone recovering from isolation, whether from an illness, or a loss, needs a period of social recovery. During our ordeal when we’re in survival mode, we may have lost our confidence in how to connect with others. We might even feel despondent about people “not being there” for us. What do you have to say about our social recovery after a long, lonely period of feeling disconnected?

     

    Molly: If we’ve been disconnected and isolated for a time, and experienced a major life change, we might need time and support to start connecting with others. We might have rusty social skills, less confidence in making connections, or the lens with which we are making connections has changed and we have to adjust to a new social perspective. What I witness with many of our community members is that they’re building social confidence, after a difficult life experience. If your ability to connect socially were a muscle, after a time of change in your life (whether that is an illness, the birth of a child, or retirement) you might need to rebuild your social strength with conditioning, to practice in safe and supporting social situations. Once your social muscles are toned up, you feel more prepared to go out into the world, to your workplaces, families, friendships, and communities, having had safe and supportive social interactions that helped to integrate that experience into yourself.

     

    Val: That’s a brilliant way of looking at rebuilding our confidence to be social again! Yes, it’s social conditioning, social muscling-up. Having the Cancer Community Center as a safe place to muscle-up and practice being socially active is a way to prepare us to get back out into the world. What have you learned from working at the Cancer Community Center as their mission services director?

     

    Molly: Val, I’ve had the experience of interacting with hundreds of people diagnosed with cancer and their loved ones when they come to the Center to find support. We sit down often one-on-one with every new community member. When they first come in, they’re often scared and overwhelmed. We share information about the programs at the Center, how we can help and work together to identify what they’re most interested in. Many activities at the Center are based on a peer support model which means we create opportunities for people to connect with someone else who has had a similar experience. We offer support and educational groups, complementary therapies, nutrition and movement activities. When someone who is recently diagnosed talks with another person who has been there and knows what it’s like to get that diagnosis and try to figure out the path ahead of them, it's like seeing a person in the dark find a flashlight. All of a sudden, there is hope. They understand that others have been down this path, and they're here to help and share what they learned, what worked, and what was hard for them, and that every experience is different. It's reassuring to know you’re not alone.

     

    Val: Would you mind telling us a personal experience of breaking through an isolating time in your own life?

     

    Molly: I have had several times, but the most powerful one was when my son was born. I was in grad school when Leo was born. First, there were not a lot of other pregnant grad students, and I was a new Mom. Talk about a life change--you’re sleep-deprived, have a huge responsibility of caring for another human being, and you have never done anything like this before. You feel totally challenged every day, and often I felt like I didn’t know how do this. I was fortunate to have Birth Roots, a support organization for young parents in my city. I was attending a class for new parents, and heard how other parents were coping, or not. I received the benefit of learning that everything I was going through was normal—yes, crying that much is normal. It gave me more confidence in my new role as a mother. After the group was over, I went back to school, and continued to identify ways to connect with other families. I knew that to have balance in my new role, I had to keep integrating the role of Mother into my identity. I was never a mother before, and now, five years later, that role keeps shifting. First, I was a new parent, then I was the mother of a toddler, then a preschooler, and now have a son in elementary school. It's always changing, but what I have learned is that I need the social support of other parents because they “get it.” They are there, and that connection helps immensely to reduce the anxiety, isolation and confusion of trying to navigate the vast challenges of parenthood.

     

    Val: Thanks so much for your story and insights, Molly. It’s clear we need support organizations when we feel isolated by a major life change. It makes life so much easier to have people at the ready who understand our predicament, so we can practice being socially engaged in new ways. It’s heartening to learn from you how we can foster long-lasting, deep friendships, and a build a solid sense of community.

     

    Molly: I enjoyed our time, and thanks so much.

     

     

    For more information about the Cancer Community Center: www.cancercommunitycenter.org.

     

     

     

    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.

     

     

     

     

     

     

     

     

     

     


     

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