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.

Eating disorders are grossly under-recognized as a condition that affects not only women and girls but also men and boys. Because of this, when Thomas developed anorexia at age fourteen he was faced with the added challenges of combating stigma, finding treatment, and connecting with male peers undergoing similar experiences.

After a hospital stint that restored his physical health, Thomas was declared “cured,” but his emotional problems remained unaddressed. He relapsed several years later, and this time struggled primarily with orthorexia. Undeterred by the obstacles facing men with eating disorders, Thomas took his well-being into his own hands. He made it his mission to cultivate the community and comprehensive understanding of holistic wellness that enable someone to truly begin the journey of recovery.

Thomas recalls how small his world became when he was in his eating disorder, and how obsessed he became with controlling not just food but everything in his life. He shares the techniques and tools he adopted -- like writing -- that helped him detach from ED thoughts and behaviors.

As an eating disorder recovery activist, Thomas decries the insidious gender and age discrimination in eating disorder treatment and awareness models across cultures. Societally imposed appearance standards plague men too, and it is not unusual for them to remain undiagnosed despite showing hallmark symptoms of eating disorders. Thomas’s story calls upon us all to recognize that men get eating disorders too, and to help expand treatment options and shift the recovery culture to be more inclusive.

Originally from Sydney, Australia, Thomas is a student in Tübingen, Germany, pursuing two degrees: one in Communications majoring in Media Production and the other in International Studies majoring in German. Learn more about Thomas’s work as a wellness coach, health activist, creative producer, and author of You Are Not Your Eating Disorder on his website: http://www.thomasgrainger.info/.

Want a glimpse of what opioid addiction really looks like?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Resources:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

What makes up the world, for me, is language. While the natural sciences contend that the world is made of matter—atoms, molecules, cells, genes, tissue, organs—I believe that language accounts for what happens between people. We don’t just pass down genes. We inherit the words we speak. We don’t just care for our own bodies. We care for our own stories.

I arrived at Boston College certain that I would study English and love it, but after a year of introductory English classes, I felt entirely uninspired. What was the matter? When it came to the stories, what mattered?

During sophomore year, something happened in my own story. I stumbled across a news article about a new interdisciplinary Medical Humanities minor. Medical humanities is a field devoted to the humanistic and cultural study of medicine, caregiving, illness, disability, and representations of the body; it values the interconnectedness and complexity of these issues, looking at them from different perspectives in order to better understand them. These topics have always been present in my life: my sister works in a lab, my twin is studying medical imaging, my mother is an EMG technician, my parents cared for aging and ill relatives and friends.

Could medical humanities synthesize my love for literature and my interest in caregiving and healthcare?

Sophomore fall, I attended a symposium at Boston College on Genetics, Narrative, and Identity. Contributors to The Story Within, a collection of essays on genetic diseases and the complex life-stories and decisions surrounding them, captivated me with their candor, strength, and insight. The day culminated in a writing workshop and keynote address given by Rita Charon, M.D., Ph.D., who founded the field of narrative medicine. She made clear to me what it means to be present for another person, in sickness or in health.

I decided to enroll in an introductory medical humanities course. In the texts we studied and the conversations in which we engaged, the complexity and high stakes of the issues—genetic testing, public health, representing disability and disease—marveled me.

The most compelling text to me was Elaine Scarry’s The Body in Pain. She writes: “Whatever pain achieves, it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language.” 1 Pain is that which cannot be put into words, cannot be represented; so specific, so individual, it falls outside of any system of communication. At the same time, pain is perhaps the most difficult thing for a listener to believe. If pain really did destroy language, dissolve the relationship between two people, what did this mean for me and my world of words?

But, more importantly, pain calls us to bridge the gap between individuals. Pain calls us to create something, to listen with empathy, to trust, to acknowledge the other, to bear witness. In sickness and in health, in pain and in pleasure, our words and our stories are what humanize us and connect us.

A friend of mine recently shared with me that she has been dealing with diabetes since she was two years old. She is one of the most driven, most involved students I know. I felt so fortunate and honored to hear her story and her insight. Her story and the conversations that followed strengthened our friendship.

In college, the stories of chronic illness or disability are so often untold and unheard. Built environments and institutional policies, sometimes established without consideration for those who have chronic illnesses or disabilities, can intensify these potentially isolating experiences. Laurie Edwards, a writing instructor at Northeastern University and a person with chronic illnesses herself, writes on the state of colleges for students with chronic illnesses or disabilities, shedding light onto the ways in which colleges fail these students.2 Students, faculty, and administrators should acknowledge these students and their individual needs. Making accommodations for these students and respecting their stories for these students will ensure that higher education remains accessible to all people—sick or well, disabled or able-bodied.

On a college campus, it is easy to assume that everyone is healthy, with crowds at the gyms and a vibrant and energetic student population. At the same time, illness is easily normalized. What college student hasn’t been exhausted? Who hasn’t caught a cold in a residence hall? We must heed narrative medicine’s call to honor the stories of health and illness in each individual, to acknowledge its specificity, and to listen with care and empathy. With this kind of attitude, we can perhaps see that the campus of the healthy and the campus of the ill are not different places: they’re the same.

Over the coming months, I will facilitate the sharing of stories about college students living with chronic illnesses or disability. Stay tuned for future features from me on these issues.

Christopher Kabacinski is a rising senior at Boston College, where he is studying English and Medical Humanities. He is a founder and the editor-in-chief of The Medical Humanities Journal of Boston College, a student-run journal featuring undergraduate work on issues such as medicine, health, illness, disability, bioethics, and representations of the body. Currently, Chris is working as intern at Health Story Collaborative. He is developing a project about college students with chronic illness or disability. If you or someone you know might be interested in sharing his or her story of health, illness, or disability, please contact Chris at healthstorycollaborative@gmail.com.

Resources:

1. Scarry, Elaine. The Body in Pain. Oxford University Press: New York, NY, 1985. Print. 4.

2. Edwards, Laurie. “When It Comes To Chronic Illness, College Campuses Have A Lot To Learn.” WBUR, Cognoscenti: Boston, MA. 5 March 2014. Web. Accessed 16 June 2015.

Health Story Collaborative hosts cool events where patients of all kinds get to tell their stories. I spoke at one event, and afterward, I walked on air and could feel a change in the vibration of my body.

Following my magnificent experience, I was honored to host one of these discussions in my home for a woman named Liz who was diagnosed with ovarian cancer. I didn’t know Liz – she was recommended by Health Story Collaborative – but she and her friends had wonderful energy and sharing her story in that way was as powerful for her as mine was for me.

Though Liz and I had much in common (similar in age, children of the same age, attitudes toward life, cancer diagnosis….), we didn’t stay in touch. Life gets busy, we all have our routines, you have to prioritize your limited energy during treatments, and we each have plenty of friends we already don’t get to see as often as we would like.

This week, I actively wondered about Liz and how she was doing. I didn’t even remember her last name to try and find her email address in my list of contacts, and contacting Health Story Collaborative to find her felt like adding another thing on my list of things to do, so I didn’t follow through. Liz’s well-being remained an unanswered question.

In the meantime, here is how my chemo holiday has progressing.

First and foremost – I love not doing chemo! I love being free from tubes, I love not carrying vomit bags with me everywhere, and I love having a clearer mind. I love having more than two weeks each month when I can do things that one needs and wants to do in life (grocery shop, hair and dentist appointments, kids’ school events, etc.).

Occasionally, I think about my CT scan results. The doctors saw some fluid near the anastomosis (surgical connection of two parts of my intestines that aren’t normally connected). The fluid can be simply nothing or it could mean that the Avastin (which has been working so well for me) may be doing damage to the stitching there. If there is damage, it is inoperable, and a tear in that area would likely be fatal. And not instantly fatal – it would more likely involve a long hospital stay and decline. For the record, that is not my preferred way to die. So if that were the case, that would mean no more Avastin.

I generally don’t look ahead; I mostly assume we will handle whatever comes up when it arises. But when I think about this particular potential conversation with my doctor, I do remind myself that if Avastin is no longer an option, I am lucky to have other options when it comes to chemo drugs. There is another drug, Erbitux, that many friends have taken and one friend is currently taking with successful results. The most notable side effect is a major skin reaction. It looks like you have acne or a red rash all over your body, which is usually uncomfortable. Given how sensitive my skin is on a good day (for example, I have to watch what kind of Band-Aid I use, or which tape they use on my skin at the hospital), I fear that my skin will be especially sensitive to this drug. Besides that, it is unsightly. I kind of like not “looking” like a cancer patient.

Mostly, I try to stay focused on the present. Admittedly, that is easier to do when I am feeling well. The snow is gone and while it has been chilly, the sun is starting to shine, so that helps.

However, I’ve also had many days filled with pain that make it hard to move or even stand, and nights where the pain keeps me from sleeping. Strung back-to-back for over a week, these days feel endless and discouraging.

I realized that I rely on living my life from miracle to miracle and I wasn’t noticing anything miraculous popping up, so that was bringing me down as well.

During that time, I did what I could. I booked more acupuncture. Tom Tam loaned me this device to wear to help with my pain. (I was skeptical, but it truly helped enough to get me up and moving.) I scheduled regular bodywork appointments with a local guru. I resumed calls with my energy worker. I did a reiki session that enabled me to sleep. I read funny novels and watched comedy clips on YouTube. I reframed any negative thoughts that made their way into my psyche.

Absentmindedly deleting junk emails this week, I noticed one about a new drug approved by the FDA, ramucirumab (brand name Cyramza®) targeted for stage 4 cancer patients. It works similarly to Erbitux but with different side effects. Ah, a potential option if I need it. Thank you God. I felt myself exhale.

Then, I went into Dana-Farber for a port flush. (They need to periodically access the port in my chest and flush it with saline to keep it clear and useful.)

I signed in and the woman behind the counter gave me the plastic bracelet with my name, birthdate, and medical ID number. I hate that bracelet and all that it stands for. The port flush went well and, immediately afterwards, I walked through the waiting room, straight to the trash can, and pulled the plastic bracelet off my wrist.

As I held it over the trash can, a woman stopped and said to me, “You might not….”

Immediately defensive thoughts went flying through my mind, such as, Don’t tell me that I might not want to throw this away. Don’t tell me that I might need this for discounted parking. I just want to be rid of this thing…

Thankfully, she couldn’t hear my thoughts, so she continued on, uninterrupted (as far as she knew), “…remember me. I did a talk at your house….”

OH MY GOSH. It was LIZ! I just LOVE it when questions are answered. I didn’t know where to start reconnecting with her – there were so many places to begin!

Well, we were both alive, which seems to be everyone’s first question about cancer patients. She looked good and energetic and still had the cynical edge that made me laugh.

She was back on chemo and today was a treatment day. We talked about parenting through treatments and taking care of ourselves and living with one foot on the path of “I will heal” and the other on the path of “What if I don’t.” We talked about Kripalu. We talked about Tong Ren and Tom Tam and, in that crowded waiting room, I lifted my shirt to show her the device he developed that helps me with pain. (You should know that lifting my shirt also exposes my colostomy bag, but that paled against my excitement of seeing her and sharing something that might help. Besides, in that room, people are dealing with issues larger than the horror of glimpsing someone else’s colostomy bag.)

Running into Liz at that place and time was like a Divine Intervention. She told me that she really needed to see me at that moment, and I couldn’t explain how lifted I was to see her. It helped to restore my faith in the connectedness and purpose of the universe. Her presence helped me to feel like God was listening to my questions and would provide the answers if I can just be patient.

We exchanged email addresses again and while I am not sure how we will stay in touch, I know that our hearts are connected enough to bring us together and inspire each other as we move forward.

Thank you for always being there to inspire and support me. I appreciate your prayers as much if not even more during this break, as it can be scary and painful but also, bearable, with your friendship and support.

Blessings and love and miracles,
Mari

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Originally published on WBUR CommonHealth Blog, April 20, 2015

Resources:

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

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

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

Hi everyone, I got GP three years ago. I also have diabetes and high blood pressure. I had some trouble in the 80s that never got figured out, and I think this is what it was then. I still work, but it’s not easy. Just like most of you, hardly any friends or family comprehend this, and I probably wouldn't either if I wasn't going through this, but I hope I would. I love all the wonderful people I have met in these groups; I wouldn't make it without you. I can still munch on a few things, so I consider myself extremely lucky.  If I had one wish, it would be to be able to help all of you. There are way too many having too many struggles to deal with. Love you all.

Gastroparesis is an "invisible disease", which means that no one knows that I am sick by just looking at me. They make comments about how great I look after losing so much weight. They don't understand when I tell them thanks for the compliment, but I lost all of my weight from not being able to eat anything and would rather be heavier than feel the way I do.

My Gastroparesis Story

My name is Trisha and I am sharing my personal story to give you an inside look at what it's like living with this awful and misunderstood disease. I have had GI-related issues and numerous sporadic episodes of being unable to eat due to pain and nausea/vomiting for many years, but none of the episodes has been anywhere close to being as severe or long-lasting as the issue I have now.

In early February of 2013, I became sick with what we thought was a common stomach bug. I was unable to eat or receive an adequate amount of fluids orally, due to severe abdominal pain, nausea, and vomiting. As I progressively got weaker and the symptoms increased, my doctor diagnosed me with possible diverticulitis. After a few trips to the ER, with little help and no real improvement, my family and I knew that this was not a stomach bug, so I decided to see a gastroenterologist for my issues.

My gastroenterologist ran a number of imaging tests, but could not find anything that would be causing my inability to intake any nutrition without pain, nausea, lack of appetite, and vomiting. After a couple of months went by and I continued to get weaker and lose weight, I was referred to a urologist and a gynecologist. Neither could come up with a reasonable diagnosis to explain my symptoms. I was referred to a surgeon for a diagnostic laparoscopy. I never made it to that appointment because my husband had had enough of me going from doctor to doctor with no results. I was not improving. Months had passed, and I was still unable to eat, vomiting or dry-heaving when anything went in my mouth, and in lots of pain.

So one morning, my husband drove me to UNC, where I was admitted for testing. I went home the following week on a liquids-only diet. I was unable to drink an adequate amount of fluids following hospital discharge and I became dehydrated. In addition, I was facing awful side effects from Reglan, the medication the doctors had put me on. I returned to UNC and was once again hospitalized.

I had to receive nutrition, and it was clear that I would not be getting it orally. In May 2013, I had to resort to having a GJ feeding tube placed in my small intestine, which I still have today. I have a machine that pumps formula into my body for at least 15 hours a day. I have to wear a backpack carrying this formula all day. At first, it was hard to accept, but my faith helped me gain peace, and I became comfortable with wearing the bag in public. (I admit a more comfortable and stylish bag did help some as well.) I have continued to have rough days but have been able to function "normally" on most days. Nevertheless, the past 6 months have been extremely difficult for me physically and emotionally, as my body has begun having trouble with tolerating enough calories via the tube. Surviving on less than 500 calories a day doesn't give me much energy at all.

I am a 5th grade Science/Social Studies teacher. I love teaching with a passion, and this year is my 15th year as an elementary teacher. However, due to illness and other hospitalizations, I have been unable to work. At first, I was angry and upset. I honestly thought that I was fulfilling my purpose by being a teacher and loving mother, so why was my body keeping me from being in the classroom? I questioned God's reasons for making me endure the pain and suffering of this debilitating disease. I honestly try my best to live my life with as much love, understanding, and patience as I can. With prayers and contemplation, I have come to believe there is another purpose for my life; at least I hope that's what it is.

Some doctors have me diagnosed as having “Gastroparesis” which means a “paralyzed stomach.”  I have learned that the majority of the public and even medical providers/physicians are not aware of this debilitating disease. Some doctors label me as having a “Functional GI Motility Disorder.” Regardless of the label, my life has drastically changed. Since my diagnosis, I have seen multiple doctors/nurses. I have had many return visits to the ER for dehydration, uncontrollable pain and nausea, and feeding tube issues. Every 3 months I have to return to Interventional Radiology and have my feeding tube replaced, sometimes even sooner if it clogs or falls out. I was an active parent, wife, daughter, and teacher before my illness. I was overweight, but otherwise healthy and felt great. Since getting sick, I have lost approximately 160 pounds, and on most days, especially recently, feel too awful to be active. My quality of life has diminished, but I will continue to fight to get it back.

At first, I felt strong and brave, thinking I could live my life the same as always.  I would just have a different way of receiving my nutrition. Instead of eating, I would tube feed. To begin with, I tried feeding at night so that I could feel and look "normal" during the day. But I was not "normal" anymore. I was struggling to get through my day at work, just to come home and crash with my family. I gave up trying to hide my illness, and decided to begin wearing my backpack during the day to run my feeds in hopes that my energy would improve. I wear my backpack all day, regardless of whether I am working, grocery shopping, or going to a doctor's visit.

Although I love my teaching career, I am currently on medical leave because my body cannot keep up with my physical demands. I am praying to regain my strength and get my symptoms under control so I can return to teaching soon, as I miss it greatly. I was hospitalized this past October (2014) for almost 2 weeks because my body couldn’t even handle the formula that I was trying to send through my GJ tube. In December (2014), I had my gallbladder removed, and since then, I have been trying to increase my feeds so I can function and regain my strength. I am currently surviving on less than 700 calories (tube fed) a day.

I despise how this disease makes me feel guilty over missing family events and not being able to attend some of my children’s activities. I hate not being able to easily go out to eat, to sporting events, camping, vacations, or any of the other things I enjoyed prior to my illness. I am young and should have lots of life ahead of me, but instead I am struggling to find a cure or treatment that can allow me to actively live again. It's hard to fathom that there is not a cure for gastroparesis/FGIMD and that I may have to deal with feeling like this for the remainder of my life.

Gastroparesis is an "invisible disease", which means that no one knows that I am sick by just looking at me. They make comments about how great I look after losing so much weight. They don't understand when I tell them thanks for the compliment, but I lost all of my weight from not being able to eat anything and would rather be heavier than feel the way I do.

I am angry at times. My insurance will not cover my formula that is required for me to survive and puts hurdles in my way before covering certain treatment options. Sometimes when I see a new doctor or nurse, I have to TEACH THEM what is wrong with me, what kind of medications I need that work, and which medications I have to stay away from. I am heartbroken when I make some exciting plans with the family, but then I have to cancel because of being sick. I want MY LIFE back!

I have been blessed, though, with receiving help and support from those around me. I am fortunate to have found a wonderful gastroenterologist who actually listens, seems to genuinely care, and attempts to help me manage my symptoms. Additionally, I am appreciative of the support I receive from my ever-growing GP community.

I am a firm believer that everything happens for a reason. I have faith. Through this storm, a wonderful bond was formed with two of my fellow GP warriors. We are using social media and our advocacy group to create web pages, community pages, Twitter movements, gastroparesis-related events, letter writing campaigns to elected officials, the media, and medical providers.  We are writing and distributing petitions, making awareness videos, creating fundraisers, and participating in all sorts of other activities to support the GP community. We have formed a magnificent team. I have come to realize and accept that God has set forth this path for me. I HATE GASTROPARESIS!  It has been a thorn in my side, but I am finding my way.

It is really scary having a disease that even medical providers do not know exists.

A Day in the Life with GP

It is 1:30 in the morning.  The monster that dwells within my stomach wakes me from another nightmare.  As I sit up, the intense nausea practically brings me to my knees. I am dry heaving. Some people compare this to having the flu.  In my experience, gastroparesis (GP) makes having the flu look like a walk in the park. What I am going through is worse than any hangover I have ever had or the time I got food poisoning. I take a Zofran for the nausea, and I relocate to the recliner so I can sit up.

The minutes seem like hours. Time passes by so slowly. It is now 4:30 a.m. I have been sitting in the chair unable to go back to sleep. I am having anxiety. The stress this sickness causes is indescribable. I am also very depressed. At times I have thought about suicide, but so far I have not acted on those thoughts. When I am in a flare (that is when my symptoms are worse than usual,) I become very scared and confused. My mother calls it crossing over to the dark side. My thinking is negative and irrational. I want to die. The psychological aspects of this disease are almost as bad as the physical, and they do feed off each other. Even though I see a therapist and take an antidepressant, my mind has turned into my own worst enemy thanks to GP. Whenever I can sleep, GP haunts me in my dreams. I never really can escape.  It is relentless, and I suffer 24/7/365.

It’s around 5:30 a.m., and the worst part of the sickness is starting to pass. As my old Dell Desktop is booting up, I have to go to the bathroom. I praise God the laxatives have worked. When I first got sick I suffered from chronic diarrhea.  It was so bad I spent a good portion of my time on the pot. I have had my share of accidents in the bed and in my pants. That has to be one of the most demeaning feelings I have ever experienced in my life. I don’t have to worry about that anymore, though, because with all the medications I take, I now suffer from the opposite problem. Sometimes I go for days without going. When I finally do have a bowel movement, it is extremely painful. I am usually impacted and the feces must be digitally removed, which makes me bleed from my rectum. That entire experience is physically and emotionally brutal. Who knew a simple bodily function could be such a traumatic ordeal?

It just took everything I had in me to feed my cats. I feel bad for my pets. I can hardly care for them anymore. My mother usually has to remind me to feed them. I never talk to them or play with them nowadays. I just don’t feel well enough to participate in those types of activities anymore. Those are the kind of things I used to love. GP has truly touched every area of my life.

I am weak and shaking. I can hardly think straight as I sit down at my computer. I am so cold. For some reason I am always so cold. I turn on the heating pad and pile the blankets up over me. I live in Arizona, where it is over seventy degrees outside right now, and I am still freezing! I can’t even begin to imagine living in a cold weather climate with a diagnosis of GP.

Shivering, I log onto Facebook. Last April I took a turn for the worse and ended up with a flare that lasted months. I was so sick I could not leave the house. All I could do was sit at the computer. I ended up meeting other people online just like me, who also suffer from GP. That is one of the only good things I have gotten from this horrid disease. I have made many great friends that mean the world to me, even though I have never met them personally.  I also found many support groups where these same people shared their experience, strength, and hope with me. I have read GP only affects about 5 million people, and the medical community does not know much about it. In fact, the ER staff had to Google search “gastroparesis” upon my last admit. They had never heard of it. Neither had I before I got the diagnosis. It is really scary having a disease that even medical providers do not know exists. My regular GI doctor has only had three people in his entire career with GP. His other two patients are diabetic. I am the only person he has ever treated who is “idiopathic” (which means they do not know what caused the GP).  So, the GP community on Facebook has taught me more about this disease than any doctor has – and more than what I have been able to read about on the Internet.

Facebook is also how I socialize.  Since I am always sick, many of my “friends” no longer have anything to do with me. It is hard to make plans to go out when I never know how I am going to feel. Half the time I end up having to cancel.  I have all but given up hope of ever finding a potential mate who will accept me being sick. I have no sex life at all. I am so very lonely.

However, I am fortunate to have my family by my side. I had to go home to live at my parents’ house about a year ago because my symptoms became so bad I could no longer work. I ended up losing my apartment and everything in it. I filed for disability and got denied. I have appealed that decision. Who knows how long it will take before I am approved? In the meantime, I am flat broke, and I am on public assistance. Twice in the last few months they have told me my medical insurance has been cut off.  Both times were apparent mistakes, but do you know how upsetting that was? I have never been so afraid in my life. I really wish I could work and be self-supporting; relying on the government is really unreliable.

Okay, I have taken my morning meds, and I ate breakfast.  My breakfast is the same every day: one Activia yogurt. Since I got diagnosed, I have been on the GP friendly diet. I can no longer eat the things I love. The diet is very restrictive. Following the diet has helped decrease the violent vomiting, but I have developed a fear of food. To be honest, I only have about 10 different “safe foods.” Since I am always sick, I don’t really consider them “safe foods.” At any rate, I am terrified of eating anything new or different outside of those 10 things. I have lost a little over 80 pounds since I have been diagnosed with GP. I do not go out to eat at restaurants anymore. When I first got sick, just looking at all the food on the menu and seeing what the other customers were eating was more than I could take. The smells of all of that food made me even more nauseated. I hate getting sick in public so I just don’t dine out. Even watching television is rough. All those commercials with all that yummy food I can’t have really messes with me sometimes.

Then there are the holidays! I usually become very depressed during what is supposed to be a happy time. In America, our holidays are all centered on food. Hell, I can’t even have cake on my birthday anymore. The last time I did that, I wound up in the emergency room. It is really tough, but at least I can still eat. Many people with GP rely on tube feeds and TPN for their nutrition. I struggle with maintaining my weight, malnutrition, and dehydration on a continual basis.

It is now about 9:00 in the morning. My 70 year old caregiver is awake. My mom has become my caregiver. It makes me feel so bad knowing that I should be the one taking care of her. I also wonder what will happen to me when something happens to her. Right now, I do not have the finances or physical and mental well-being to take care of myself. My future does not look too bright, does it?  In the meantime, watching me get sicker and sicker is killing my family.  My four year old grandson does not understand why I can’t play with him for more than a few minutes at a time. That kills me.

Now it is time to get dressed. I mostly wear baggy sweat pants as I can’t stand to have anything restrictive around my tummy.  It takes all of my energy to stand in the shower. I did not shave my legs all winter long. I only wear makeup on special occasions, which is pretty much never anymore. I have not had my hair done in about two years. I was a real girly-girl before I got sick. I was never without hair and makeup. I always wore a dress and high heels. GP has robbed me of my femininity, my sexuality, and my self esteem.

From about 3:00 in the afternoon until I go to bed is usually the best time of day for me. On a good day, I will usually try to do something around the house. It has become increasingly challenging to clean and do my laundry. This is also the time of day when I try to arrange my doctor’s appointments. I am too sick to go in mornings. Can you imagine being too sick to go to the doctor? Can you imagine the doctor’s office being the only place you ever really go?

Now it is dinner time. Just recently, I had to go to liquids only for dinner. It is so hard to watch everyone else eat a burger and fries while I get broth or a nutritional shake. After dinner I try to walk around the block. Remember, I have little energy, but I do believe this little bit of activity helps with motility. I watch television for the remainder of my day.

It is now about 8:00 in the evening. I take my laxative and hope for gentle overnight relief. I fill up my pill cups for the next day. I take so many different medications now that I have to place them in cups, so I can keep track of whether I have taken them or not. I have forgotten to take them, or have taken too many on occasion, and this has led to problems.

There are very few medications available to treat GP. When I first got diagnosed, I was on Reglan. That medicine has a black box warning. I started having side effects that are now permanent. Now I take Domperidone.  It also has serious potential side effects, and I have to get regular EKGs.  Dom is not approved for use in the United States. I have to order it online from Canada. It takes about ten to thirty days to receive. One of my biggest fears is that I will not receive my medication on time. I get very sick within a day of not taking the medication. I also fear the day it stops working.

Currently, I am seeing a motility specialist at Mayo Clinic. There are not many treatment options available for me. I am going to start alternative therapies. I see a chiropractor next week and I hope to see an acupuncturist and Chinese herbal medicine doctor in the near future. I am also going to be checking into Botox injections and a Medtronic stimulator. As I mentioned, I have no money, and I do not think my insurance will cover those procedures, but I am still going to look into it. At this point, I am desperate to feel better, and I am willing to try just about anything.

I go to bed at around 9:00 p.m. This is when I pray. My faith in God is what gets me through the hell I endure every day. So, I hope and pray for a good night’s rest without nightmares.  Then the monster that dwells within wakes me about one o’clock in the morning to rear its ugly head again…

We need to continuously pressure the powers that be to conduct more research to help find a cure for this devastating illness. So many of us have suffered, been told we are crazy, and been told we are addicts because of our need for pain medicine. We are labeled drug seekers at our hospitals and are denied proper treatment as a result. I fear that if something is not done to raise awareness about gastroparesis, the number of people who perish as a result of this horrible disease will only continue to grow.

Hi, I am Regina. I am 50 years old. My story begins January 28, 2008, with a middle of the night trip to the emergency room for uncontrollable abdominal pain and vomiting. Let me first say that prior to this date, I was a pretty healthy woman, working two jobs and traveling a lot for work. On this dreadful night in 2008, I was so sick I had to go to the ER. I had no idea what was going on, but they ran some tests and said my gallbladder was filled with stones and sludge and therefore had to be removed. I arrived at the ER at 4:30 a.m. and was in surgery by 9:00 a.m. I awoke in recovery in severe pain and figured this was normal post-surgery pain. But the pain continued, even after receiving pain medications.

By day two, I was vomiting again and could not stop. I could not eat or drink. By day five, they had me somewhat under control and discharged me with paperwork describing a diet to follow after gallbladder removal. The next few months consisted of weekly trips to the ER for pain and vomiting, as well as several more hospitalizations and tests in an effort to figure out why I was still in this condition. By May, I was unable to work consistently and decided to go on short-term disability until they could find a way to cure this problem.

Then a gastroenterologist at the local hospital suggested that perhaps I see another gastroenterologist at UPENN or Temple University, as he thought that perhaps I could have gastroparesis as a result of the surgery. I did my research (as I worked in the healthcare field as a Fraud Investigator for a major insurance company), and determined that the best place to go would be Temple, as they had a section of the GI department which was dedicated to gastroparesis. I made an appointment to see the head gastroenterologist there, Dr. Parkman, but before I could get to that appointment, I was hospitalized again locally. Eventually, I was transferred to Temple. They kept me in Temple for almost a month, running every test I had never heard of, and by the end of that hospitalization, they told me I had severe gastroparesis.  My Gastric Emptying Study showed 96% retention after four hours. In August of that year, I had surgery for a Gastric Stimulator.

The stimulator helped me only a little. I continued to have repeated hospitalizations over the next few years, and my condition only worsened. By Feb 2011, I had gone from a physically active, 165 pound, athletic woman to a 90 pound version of who I used to be. During one hospitalization, they refused to discharge me until I agreed to let them insert a g-tube and a j-tube so that they could put me on tube feedings and keep me from becoming malnourished and losing more weight. I now weigh about 120 pounds, but I continue to suffer from near constant abdominal pain and intractable vomiting. I am still hospitalized multiple times a year and have had several different types of procedures and surgeries, including Botox injections.

To this day, I am nowhere close to the normal woman I used to be. She is long gone. I am now a weak, somewhat feeble woman who often needs to use a wheelchair to get around, as I sometimes do not even have the strength to walk around my apartment. They say that there are no more answers for me at this point in time and I just need to accept my condition. I am fifty years old, and I am limited as to what I can do. I am restricted to a full liquid diet, and every time I eat, I end up in the ER within hours or days. I cannot be around sick people at all, or I will get sicker than sick, and inevitably, I end up with an infection ten times worse than what I was exposed to. I have had multiple instances of MRSA and other staph infections that have put me in the hospital, and even nursing homes, for months at a time.

We need to continuously pressure the powers that be to conduct more research to help find a cure for this devastating illness. So many of us have suffered, been told we are crazy, and been told we are addicts because of our need for pain medicine. We are labeled drug seekers at our hospitals and are denied proper treatment as a result. I fear that if something is not done to raise awareness about gastroparesis, the number of people who perish as a result of this horrible disease will only continue to grow.

Despite the difficulties associated with my gastroparesis, there are several things I have learned about myself and about my life since my diagnosis. I was always a very career oriented person and my job was my life. I loved the travel that came with the job, and after being diagnosed, I did not know how to define myself as a disabled, non-working person. But what I learned over time is that my job did not define me and neither does my illness. I may not be able to help others in the same manner I did while working, but by being a part of the support groups I am in, I am now able to help others in a different way. I believe that my God uses me to help others through my life experience. I can help people who are newly diagnosed by assuring them that gastroparesis is not a death sentence; rather, it is another obstacle that I can overcome and that teaches me I am stronger than what life throws at me. I have made several wonderful friendships with men and women from all over the globe. And though I have never met these people, we help each other tremendously on a daily basis. We band together to try to create awareness and change for the way the medical world handles our illness. There is still so much to learn about gastroparesis, and if I can be even one single voice that is heard in the world of this devastating illness, then I can turn the negative into a positive and perhaps help others who are diagnosed in the future.

I consider it my purpose in life to make a difference and fight for every second of feeling well. I will promote awareness and try to help others get to a decent place in their lives until I can't do it anymore.

Hi, my name is Laura and I have gastroparesis. I have had type 1 diabetes for 36 years. My gastroparesis was caused from my diabetes. Like most folks with gastroparesis, I did not recognize the early symptoms for years. In April of 2001, I was taken to the hospital with fears of a heart attack due to the incredible pain coming from my chest. They found nothing and it seemed to go away on its own. About a week later, I started having nausea and vomiting 24/7.  One doctor did an endoscopy and had to literally scoop the food out of my stomach for an hour and ended up cauterizing 20 small stomach ulcers. The next two years were nothing short of hell. My doctors had no idea what was going on.  I had hospitalization after hospitalization, test after test after test. I also had my gallbladder out.

During this time, I lost 60 percent of my body weight and was not doing well at all. Luckily for me, my PCP went looking through medical websites for doctors to see if he could find out anything for me. To my absolutely miraculous luck, he found a doctor in Kansas City, Kansas, who was doing an FDA study on the Entera Neurostimulator for gastroparesis. His article, written about diabetic people with gastroparesis, could have been written about me. My doctor printed it out for me, and we talked about it.  He spoke to my local gastroenterologist and a week later I was off to Kansas to be part of an FDA study for the stimulator. I had the implant done, all the testing, and six monthly visits from Massachusetts to Kansas.  Although it helped with the incredibly strong nausea, it only did a so-so job overall. I was also given a J tube, which actually saved my life. I was now able to get medication into my system, bypassing my stomach, so that it would actually help me. I spent the next 7-8 years with both good and bad days, and at least 10 to 15 hospitalizations every year.

In 2012, I went to a local doctor who monitored my stimulator, as the batteries were getting ready to die. Unfortunately, it's not as simple as changing a battery; you have to have an entirely new device implanted. I had the surgery in December of 2012 and did not get sick again until Thanksgiving of the same year. I've had my stimulator turned up in intensity in hopes of keeping the nausea at bay. It has done a very good job, all things considered, and I can proudly say that I have not been hospitalized since the new one was implanted in 2012. I still experience frequent pain and bloating, but I can cope with these symptoms.  The 24/7 nausea and vomiting was what was killing me.

When I was out in Kansas, one of my doctors gave me a number for a nonprofit gastric motility organization. It turns out it was right here in my home state of Massachusetts. I joined, but nothing really happened for a few years. Then, one day, I accidentally got someone else's newsletter from them and called to let them know they had the address wrong. A conversation began.

I had been struggling since my diagnosis with the fact that I previously had a very good career and a wonderful husband, and now here I was a sick person, with what seemed to be no purpose in life. The motility organization helped me to have a purpose in my life by helping others cope with this disease. I began reading and hearing about other patients who were coming down with gastroparesis, and their stories were just like mine – doctors looked at them like they were crazy because these doctors had never heard of a paralyzed stomach disorder. I am fully disabled, unable to work, and I'm not well most of the time, but I do not let that stop me.  I pushed and pushed as a volunteer, and I am currently a mentor who calls other people with this disease who are looking for a friend, someone to relate to.

Now, after some years of working with the motility organization, I have had a chance to actually see the difference that I have made in some people's lives. This gives me a reason to get up every day and the pleasure of knowing that I have made a difference by putting a smile on someone's face, or relieving someone’s stress when they didn't think that was possible. I now spend all of my good times volunteering and just talking to others with this disease to let them know that they are not alone, and that it is not in their head. This is a horrible disease that currently has limited medication or therapies to help.

There are over 5 million people with gastroparesis in the US, and it is hard to find two people who have gone through the same exact experience.  What helps one person doesn’t necessarily help another, and a medication that helps today might not work tomorrow. Likewise, a food you can eat today might make you vomit and feel bloated tomorrow. It is a constant trial.

This disease has to be one of the hardest to deal with in terms of quality of life. Your whole world needs to change to a “new normal” with new dreams and wants. Between the disease and all the medications, it is hard for me to get up and get going every day. It would be so much easier to curl up under my covers and stay in bed constantly. That's how we all feel. In addition, I have found that almost everyone I have spoken to with any gastric disorder like this has felt abandoned by family and friends. In some cases, lack of understanding causes people to stay away. Now, when I am asked if I will attend activities or functions, my answer is, “Yes, I will be there if the disease lets me.”  Gastroparesis can flare up at any moment. I can be completely fine, feeling wonderful, and in less than 60 seconds, I am trying to find somewhere I can throw up. I have been very lucky to have a husband who really meant “in sickness and in health,” as this hit me 5 days prior to our one-year anniversary. Many husbands would have left by now, because they can't understand this disease or just can't handle it

My diagnosis was a huge surprise to me.  Even being a diabetic, I had never heard of gastroparesis. It is an overwhelmingly hard and complicated disorder that needs more awareness. Gastric motility disorders need to be brought to the forefront of research. I do as much volunteering and helping as I can, but I am only one.  I consider it my purpose in life to make a difference and fight for every second of feeling well. I will promote awareness and try to help others get to a decent place in their lives until I can't do it anymore.

Do not ever be convinced that you can do nothing to help, that you do not matter. To those who are struggling, your efforts to understand, your cheerful words, your helpful attitude, and simply your willingness to contribute and be present, make a difference.

I am going to share some pretty personal information. Not a big deal to some of you, I am sure, but to me, it is huge. I am not the kind of person who does this – or at least I did not used to be. But things have changed for me.

In early February of 2014, I spent a week in the hospital and was eventually diagnosed with gastroparesis (GP). I am guessing most people have never heard of this; I know I had not, prior to being diagnosed. My life changed in ways I could not have imagined – overnight. One day, I was able to eat at buffets, and the next day, I was unable to tolerate all foods and liquids. I was hospitalized with severe pain and vomiting, put through a battery of tests (including one particularly terrible one where they forced a tube down my nose and pumped my stomach). Eventually, I was diagnosed, but was given only a brief explanation of my illness and its treatment and was sent home.

For the next few weeks, I was on a liquids-only diet, and was told that I had to gradually work my way up to soft foods and (eventually) solids. Unfortunately, nothing like that has occurred. I am able to eat some soft foods, in tiny amounts, but it is becoming clear to me that I will likely never again be able to eat “normal” foods in “normal” amounts.

At first, I told myself that I would not let this stupid disease define or control me – it simply WOULD NOT be the center of my life. But as time passed, I began to see how foolish this was. Every single day, every second of every day, I think about food. I see it; I smell it; I cook it and feed it to the other members of my household; but I cannot have it myself. I look in the mirror, and I see a skeleton. I try to eat even small amounts of food, and I am in agony. I am weak and fatigued to levels I did not think were possible. Some mornings, I do not think I have enough energy to get out of bed. I can barely concentrate and function enough to do everyday tasks. And almost every single night, my husband has to help me up the stairs to bed because he is afraid that if he does not, I might fall. My 11-year-old daughter has seen me vomiting, screaming in pain, lying on the floor crying, and on the verge of passing out. At times, it has frightened her so much that she has asked my husband to get me “Life-Alert."

I grieve over the fact that I can no longer travel or get out of the house for much of anything. I grieve over missing family events and not being able to attend my daughter’s activities. I grieve over not being able to go out to eat, or on a picnic, or to a concert. I worry that I will not get to see my daughter graduate, or get married, or have children. I am not on the verge of death today (at least, I don’t think I am), but when I look in the mirror and think about how tired I am, I realize that people like this do not have long life spans – and it bothers me.

I get frustrated because people do not understand how my life is affected by all of this. If you were to see me on the street, you would likely not realize I am sick. I do not look very sick. And because most people are unaware of the effects of GP, they ask me all of the time if I am okay now. I can’t seem to convince them that I am never going to be okay again – not in the way they mean it. I am told that I “just need to eat,” or that if I would only try yogurt, I would be okay. My own doctor (PCP) accused me of being an anorexic and told my husband to “watch me.” Though I know people mean well and are trying their best to help, it still makes me frustrated.

I am angry because I am a control freak, and I do not like being a slave to this disease. I do not like having to rely on others for help. I have screamed at, smacked, and pushed my husband away for simply trying to assist me more times than I can count. I have thrown things (including food) across the room in fits of anger. I have intentionally gone without eating – even though I know I should not – just to “show” this disease who is in control. Crazy, I know! I am angry because I do everything that I am supposed to do – eat the right things, exercise, and ingest the known medications – and I am still sick.

I think about the others who have this disease who are so much worse than I am. There are thousands of posts in my Facebook feed every day from people who have had to go to the ER or back in the hospital for dehydration, pain, or other such conditions. I know so many people now who have feeding tubes or ports for nutrition. I know many who have developed other serious conditions because of the GP. I sometimes look at them and think that this will surely be my future, too, and it scares me. There are times when I am in such agony that I can do nothing but cry – lie on the floor and beg God to just let me die. He does not – and I am so thankful that He ignores those moments.

I mostly have a good attitude about my situation and try to make the best of it. I feel blessed that I have been given so many years with the best husband and daughter anyone could imagine. I am truly thankful for each day I get to spend with them. I do not understand why I have to have this disease, but God does, and I trust Him. What I do understand is that it is somehow important to me to let people know what I go through – what all GP sufferers likely go through. I am sharing these personal details in such a public forum because I think it is important for people to see this disease and to understand what it is like. But I think it is equally important to share how much I have been blessed BECAUSE OF this disease and to let others know how much they matter and how much of a difference they can make.

I first joined a Facebook support group because I wanted to know what treatments and medications others like me had found helpful – but I hated the idea of support groups. I was there for information only; I just knew I did not need anything like support. Not for me! So foolish! You cannot imagine the blessing these online groups have been. I have learned much, for sure, but I have received so much more than information. I have received more support, understanding, and kindness than I ever could have dreamed. I have made friends that I feel I have known for a lifetime. I tell people all of the time that I hate this disease, but I dearly love all the people I have met because of it.

I have received help from family members, friends, and acquaintances beyond measure. My neighbors have cooked meals for my husband and daughter; they have watched my child and my pets; and they have offered to transport me to and from appointments. My family has come to visit me, even though I know it is horribly inconvenient for them – and they have also stayed away when I have asked them to, even though I know they wanted to be here. Honestly, every single person I know has helped me in some way. Some have visited, some have called, some have done chores and tasks, and some have simply cheered me up with their stories. All of this has been more of a blessing than I could have known.

Do not ever be convinced that you can do nothing to help, that you do not matter. To those who are struggling, your efforts to understand, your cheerful words, your helpful attitude, and simply your willingness to contribute and be present, make a difference.

By Annie Robinson

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

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

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

Paul passed away on January 14, 2015.

Resources:

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

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