Harnessing The Healing Power of Stories

 

Health Story Collaborative Blog

Harnessing the healing power of stories...

The Eulogist

 

By Annie Robinson

This originally appeared in Modern Loss. Republished here with permission. 

 

I gave my inaugural eulogy at fourteen. When my best friend Liz passed away from osteosarcoma after one year of unsuccessful treatment, her mother asked if I would share something at the service. I seized the opportunity, as it seemed like a potential antidote to the grief roiling inside me.

 

For days, I immersed myself in boxes of photographs and stacks of letters that told the story of our friendship. I spent hours feverishly recording my memories, depicting her mischievous smile, glittering eyes, and elegant voice. On the morning of her service, I rose to the pulpit with quivering hands but a strong heart, and delivered a eulogy that was humorous, commemorative, and authentic.

 

Little did I know at the time what an extraordinary journey this act had launched – into myself, into writing, and into healing.

 

To read more, click here.

 

 

Vinnie: The Face of Opioid Addiction

Want a glimpse of what opioid addiction really looks like?


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

 

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

 

 

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

 

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Resources:

 

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

 

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

 

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

 

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

 

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

Voices from the Eating Disorder Recovery Community: Natalie's Story

  

 

By Annie Robinson

 

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

 

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

 

In early July 2014, one month after I had begun treatment at Monte Nido Vista, Natalie arrived. We immediately recognized several unique commonalities we share: both of us were adopted, raised in Chicago, and developed eating disorders as adolescents. From the get-go, I have deeply valued Natalie’s sharp humor, keen self-awareness, and courage to be honest.

 

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

 

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

 

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

 

Read about the mission of the Eating Disorder Recovery series here.

 

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

 

Voices from the Eating Disorder Recovery Community: Emily's Story

 

 

By Annie Robinson

 

Emily and I met in February 2012 at a treatment center in Cambridge, Massachusetts, during one of the darkest periods in both of our lives. Our respective eating disorders had taken a devastating toll, severely damaging our relationships and our bodies, and utterly depleting our spirits. I could not have been more fortunate than to surrender to recovery at that moment, because it brought Emily into my life. She has been an unparalleled source of sisterly love, spiritual resolve, and unwavering support.

 

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

 

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

 

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


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

 

Read about the mission of the Eating Disorder Recovery series here.

 

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


Voices from the Eating Disorder Recovery Community: Kelly's Story

 

 

 

 

By Annie Robinson

 

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

 

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

 

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

 

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

 

Read about the mission of the Eating Disorder Recovery series here.

 

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

 

 

 

 

​Keep Telling #DisabilityStories

By Christopher Kabacinski

 

In the weeks leading up to the 25th anniversary of the Americans with Disabilities Act (ADA) on July 26, social media was abuzz with disability stories. The National Museum of American History even organized an international Twitter conversation on #DisabilityStories on July 15, 2015. For the remarkably successful daylong event, people from across the globe engaged in conversations about representations of disability in art and popular culture, the lived experience of disability, and historical accounts and artifacts.

 

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For people with disabilities and disability rights advocates, this anniversary occasions both celebration and reflection. Accessible spaces, biomedical technology, and assistive services have made the world a more habitable place for people with disabilities. At Boston College, where I attend school, student have rallied around the cause of disability, fighting for a campus as accessible as it is beautiful. The Disability Awareness Committee of Boston College has made accessibility a critical issue on campus, documenting the ways in which the built environment and institutional policies at Boston College—for instance, steep pathways marked as wheelchair accessible—disempower them.

 

Disability advocates in Boston marked the anniversary with a celebration in Boston Common.

 

The ADA has been a remarkable success, but we must not forget the work left to do. William Peace, who attended the event, perhaps sums it up best: “[The ADA] has succeeded legally, but socially it has a long way to go.”

 

Securing the civil rights of and equal opportunities for these citizens is, bottom line, an issue of representation. People with disabilities are daily disempowered and isolated by institutions and individuals that pass over, erase, or ignore the realities of disability. It happens when a conference is held in an inaccessible building. It happens when a path is marked as accessible but is, in fact, unnavigable. It happens when a vision resources workstation provides no resources, when the sign for the workstation isn’t even in braille.

 

People with disabilities are often invisible in some parts of everyday life, such as in the workplace. In 2012, only 33.5% of working-age people with disabilities were employed. In the media and popular culture, individuals with disabilities appear less often than able-bodied individuals. When they do appear, their portrayals are often limited.

 

The unflagging stigma and underrepresentation of disability halts the progress of the ADA. If people with disabilities continue to be forgotten or perceived in problematic ways, then the ADA will fail to achieve its ultimate goals of accessibility and inclusion.

 

Stories are the answer to this crisis of representation. Which stories get told and how those stories are circulated determine how disability is understood socially and culturally.

 

We need to move away from disability as burden and the “super-crip” stereotype. While these two overarching narratives seem compassionate or inspiring, they both portray disability as a tragedy, and life with a disability as inferior and unsatisfying.

 

Disability cannot be reduced to a single narrative of pity, overcoming, or empowerment. Disability, as with all lived experience, is complex, multi-faceted, rich, individual. It resists a single story.

 

As a society, we should listen more to the stories of individuals with disabilities. To the stories of their everyday life, of their successes and their struggles, the minutiae and the monumental moments. Disability is an innumerable range of stories—told, retold, to be told.

 

Telling stories of disability is vital to making visible and giving voice to individuals with disabilities. Hearing stories is a way of acknowledging the reality of disability and empowering people with disabilities. By acknowledging similarities, differences, and singularities, we connect ourselves with stories.

 

So let’s keep sharing #DisabilityStories beyond the 25th anniversary of the ADA. The success of the ADA is about more than ramps, web accessibility, or public services. It’s about making everyday life accessible, inclusive, and fulfilling to people with disabilities. It’s about changing our attitudes and assumptions toward disability once and for all. 

Voices from the Eating Disorder Recovery Community: Kristie's Story




By Annie Robinson


I met Kristie in July 2014, one month into my healing process at Monte Nido Vista. She had begun her journey towards recovered at Monte Nido one year earlier, on July 4, 2013. She returned last summer for a visit, and to offer a living model of recovery for those of us still in residential treatment. I was awed then – as I am even more so today – by her forthrightness, self-motivation, and steadfast belief that reaching recovered is absolutely possible. She is one of the most resilient and self-aware people I have met, and imparts wisdom every time she speaks.

 

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

 

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

 

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

 

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

 

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

 

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

 

Read about the mission of the Eating Disorder Recovery series here.

 

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

Voices from the Eating Disorder Recovery Community: Megan's Story

  

 

By Annie Robinson


Megan, a 23-year-old New Jersey native currently residing in California and pursuing a master’s degree in global public health, arrived at Monte Nido Vista on June 5, 2014, just five days before me. She and I spoke in June 2015 during the week of our one-year anniversaries. It was remarkable to recap, together, the astonishing journey we’ve been on these past months.

 

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


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

 

Read about the mission of the Eating Disorder Recovery series here.

 

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

 

 

 

 

 

 

Voices from the Eating Disorder Recovery Community: Anna's Story

 

 

By Annie Robinson

 

Anna left her home in Burlington, Vermont to begin treatment at Monte Nido Vista on April 28, 2014. When I arrived there six weeks later, she welcomed me with tremendous kindness, compassion, and support – which I greatly appreciated as I took those first raw steps towards healing. Now more than one year into recovery, 25-year-old Anna is living in Denver, Colorado and pursuing a nursing degree.

 

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


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

 

 

More about Annie Robinson:


I have experienced the powerful effects stories have in healing as both a patient and a caregiver, which has inspired my driving mission in life: to elicit, honor, and attend to stories.


I hold a Master of Science in Narrative Medicine from Columbia University, and designed a major in "Stories of Self: Realization, Empowerment and Wellbeing" as an undergraduate at New York University's Gallatin School of Individualized Study.


My clinical role as a full-spectrum doula entails supporting women through abortion, miscarriage, and fetal loss. I am also the Assistant Director of the Center for Narrative Practice, which provides people with deep critical training in how stories work and trains them to apply this knowledge in everyday life. Additionally, I curate an oral narrative project called Inside Stories: Medical Student Experiences for which I interview medical students about their experiences in medical school, with the intention to provide a platform for their own person healing, self-realization, and empowerment through the sharing and receiving of personal stories.


As Program Officer for Health Story Collaborative, I conduct interviews, edit audio stories, and write blog posts that profile remarkable individuals committed to honoring and making use of stories in healthcare. If you or someone you know might be interested in sharing their story, please contact me at arobinson@healthstorycollaborative.org.

 

Read about the mission of the Eating Disorder Recovery series here.

 

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


 

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