First and Last

Posted on 13 May 2013 by jendavid91

There are evenings like tonight that I am sure I will remember in thirty years. There’s nothing remarkable about tonight, just a quiet evening at home, only it entails being forced to watch the school’s football field undergo a Cinderella transformation into my way-too-soon college graduation. And as such, I am overcome with a simultaneous sense of relief and panic – causing me to nearly freak out at the sight of the stage being built with a near “WAIT I AM NOT READY TO LEAVE”. But alas, no one would hear me, so I will spare my neighbors the screaming.

Graduating college is funny – you spend so long thinking about what school to choose, and then what classes to choose, what dorms to live in, and which textbooks to buy or rent. I remember matriculation four years ago, sitting in the crowd of my new classmates, a pit in my stomach trying to quell my intestines from causing a scene. To think about how sick I have been these past few years – the sheer number of doctors’ appointments, pills swallowed, IV attempts, hospitalizations, scars now icing my abdomen, and an ostomy bag carefully tucked into my dress, it seems unbelievable. But I want to be clear and direct – college was an amazing experience, and while I perhaps had far from the typical four-year journey, I have so loved my time at school and done some wonderful things.

When I was graduating high school, people who didn’t know me well cautioned me with wrinkled noses that I should stay home, I was – after all – sick, and why would I want to go to school in another country? My parents, undaunted by my persistence in school choice, willingly sent me on my way (okay, not so willingly when it came to saying goodbye, but that I’m guessing is a normative going-off-to-college right of passage). I found friends who saw beyond my disease, who have laughed with me, brought me extra clothes in the hospital, met my doctors, and made cupcakes in my kitchen. I have done community service and had a job serving under-resourced preschools all four years. I have been doing research since freshman year, did a senior thesis and got a grant, and am being awarded a Psychology Research award at graduation. I’m graduating with honors. I have perfected my Patrick Dempsey addiction, finally understood how to use Tumblr, hiked Machu Picchu, ran a half-marathon, and never pulled an all-nighter. And just before graduating and really entering the ‘real’ world (whatever that actually means), I even went on a first date – make that second, compliments of vegan ice cream.

The point to the rambling – I went to college. I went to college with Crohn’s. I went to college and was sick. I went to college and had surgeries. But, I went to college. I went to college and did it in four years and am graduating. I did it. I did not do it alone, but I did it. And so can you or your child or your best friend or that new patient you had in clinic today who was frightened and sick.

As an English minor, I took a class this semester that centered around literary non-fiction. The final class project was to write an essay of our own – mine was a braided essay about the history of Crohn’s (look it up, the story is fascinating!) and my own personal experiences. I even interviewed my GI for the piece. After being undecided about the title for literally weeks on end, my roommates finally prompted me to accept the working title of ‘Not Where I Thought I Would Be’ – and they, as usual, were right. At one part in the piece, I wrote that my GI understands that even though I may be broken, I am not breakable. I sent him the essay, which he so kindly read, and sent me an email response. “I would dispute one thing,” he wrote. “You are not broken. You are whole.” And while the thought was enough to leave a permanent grin on my face and make me feel incredibly lucky and honored to have such a compassionate doctor, it made me think – he’s right. I am whole.

In pediatric chronic illness, the focus is often on what’s broken. Your ESR is too high, you don’t like taking injections, you miss school to see the doctor, band-aids dot your arms to remind you where blood was taken. There are pictures of your gut, all twisted and inflamed, the pharmacist knows you by name, your medical chart has several volumes. But we forget to remind ourselves of something really important – we’re still kids, we’re still growing, we’re still dreaming. Our bodies may be in need of support, but our souls and spirits and whole. Be it going to college or anything else, having a chronic illness is only part of the equation.

If the last few weeks have proved anything to me, it’s that life is always happening – even if it means my college graduation will be here sooner than I want. There are still so many firsts in store for me, so many exciting things ahead, and yes, enough challenges (both health-related and other) to keep me busy. Perhaps it’s not where I thought I would be, but to be honest, I’m pretty darn happy I ended up right where I belonged.

Jennie

Making the Team

Posted on 23 April 2013 by samisophia

In October 2012, I arrived wide-eyed and a little afraid at my first ImproveCareNow Learning Session. I remember walking into the big room with my luggage and taking in the scene – so many brilliant clinicians and researchers I admired and greatly respected all in one hotel for one weekend. And here I was, too. I am nineteen – and so to many, I’m just a kid still. I didn’t know what to expect, but I did expect to listen more than I spoke. After all, in a room full of some of my personal heroes, I was “just a patient.”

As the inaugural Patient Scholars, to say that Jennie and I have been given the opportunity to live a dream would be an understatement. For a girl who expected to listen far more than she spoke, my voice has been valued more than I could ever have hoped or imagined. Jennie and I are just two patients – but to think about how many patient voices can and will resonate at future Learning Sessions excites me more than I can express. It’s so clear to me now that “Just a patient” is not a concept that exists in ImproveCareNow.

On April 12th I returned to Chicago for the first Learning Session of 2013. Gutsy 2 (myself) may have been without her Gutsy 1 (Jennie) – but together through the art of virtual communication and the help of some friends, we didn’t let a sudden strike of illness take away our weekend of hard work and joyous celebration. We shared in a presentation on self-management support and treatment adherence. We opened up about our stories and the accomplishments of the PAC (Patient Advisory Council) over the past year. We were inspired by stories of progress and achievement coming from all around the network. I even learned a new dance – the PDSA – aptly named after a fundamental quality improvement measure – because QI is really at the heart of making care better and thus rightfully deserved a spot at the heart of the celebration! (I expect PDSA to go viral on YouTube any day now.)

For a moment, when I landed in Chicago, I felt that familiar sudden shock of fear. For just a moment, I felt little again, like I was “just a patient” with a lot of ideas on the fringes of a great big community. But, this time, when I entered the conference room, I knew I belonged in this community. In one year’s time, it’s my hope that more patients will have felt the joy of this kind of welcome.

Five years ago today, I was waking up early – colon all cleaned out – and driving to the hospital with my mom, neither of us knowing I wouldn’t be going home that day or that a whole new world was about to welcome us. Six months ago, when I arrived in Chicago for my very first Learning Session, I couldn’t have even imagined myself standing in front of such a brilliant crowd and sharing my story – a story that only just begins with a diagnosis and hardship – on the level I did last weekend. Today, I can’t imagine what comes next – but I know I’m humbled to have a voice that can share in the learning. I am eager to pass on the torch of leadership to the next Patient Scholars – because we all have stories, and many of the stories I heard last weekend touched me deeply and reminded me of why I do this.

I do this because, right now, another young girl and her mom are driving to the hospital – and they don’t know what comes next – but I do.

That young girl will get better. And maybe, if we all reach our hands out together to say that everyone can make a difference and is valued on our team, she’ll be able to help change care for the better for the next girl with IBD.

Like any good team, we are more than the names on the backs of our jerseys when we unite. In this Network we are more than the names we go by: patient, parent, researcher, clinician. I am so proud to have a jersey on the ImproveCareNow team.

Together, we have quite the winning streak. And one day, I really do believe that we will achieve that cure, together.

Scary Stories

Posted on 2 October 2012 by noel jacobs

“Ill people are more than victims of disease or patients of medicine; they are wounded storytellers. People tell stories to make sense of their suffering; when they turn their diseases into stories, they find healing.” James Swanton, in forward to The Wounded Storyteller: Body, Illness, and Ethics (1997).

My girls love when I tell them scary stories. Not the overly gory kind, never with bad endings, but definitely the kind with those spooky “just around the corner” monsters that, in the end, are shrunk, tamed, made nice, or were never really monsters in the first place. One time, I told them about a dare I took as a child, with a friend who lived on a street with a derelict mansion at the end of it. My friend dared me to climb the wrought iron fence (you know, the kind with sharp points at the top) and go with him into the house. Just when I had made it all the way up the fence, he yelled and told me to look in the window of the old parlor, not 20 feet from where I clung to sharp, pointy, iron. A face, pale and gaunt, looked out at me. I immediately screamed (my girls ask “like a girl?!” to which I reply that they are clearly being sexist in thinking only girls scream, well, so high-pitched). Then I fell, backwards, from the wrought iron fence, the sharp barb of the top guardpoint tearing my thumb wide open as I fell. Blood poured out of my thumb and there, less than 20 feet from me, still stood an old, empty house.

My girls stared wide-eyed, as I just let the story drop there. “What, daddy! What happened next?!” I smile and say “That’s all. I got what I came for. We went home. But I was different.” They ask me why, and I explain that I was different because, even though I was scared, I tried; I climbed the fence, and I learned my lesson. The face in the house, looking out at me, was my own. It was a bright day, and my reflection had stared back at me, scared, pale, wide-eyed. I frightened myself.

Sometimes telling stories of our worst moments is really a way to take power over them. We don’t always know it at first. But we have a chance to organize and put into words what happened, how we felt, how things ‘ended,’ and when we do we realize we’re still there and still standing, but now someone is beside us, listening, supporting. We’re changed by this, in at least two ways. First, we realize we don’t have to be alone in our suffering, powerless and scared. Second, we have learned things; things about ourselves, our strengths, what we needed help to get through, and what we survived. Much research is out there that supports this. Whole treatment programs, like childhood interventions for children who have been traumatized, are focused on the story of ‘what happened’, and actually teach children how to tell their story and take their power back. Some writers make their whole living telling the stories of their own lives, in transformative ways. They transform the world around them by helping others understand their struggles and triumphs. And they transform themselves by organizing their own learning process, their own memories, and gaining power over them in the telling.

Tell your story.

Chelf, J., Deshler, A., Hillman, S., & Durazo-Arvizu, R. (2000). Storytelling: A strategy for living and coping with cancer. Cancer Nursing, 23 (1), 1-5.

Clark, L.F. (1993). Stress and the cognitive-conversational benefits of social interaction. Journal of Social and Clinical Psychology, 12 (1), 25-55.

Ezzy D. (2000) Illness narratives: time, hope and HIV. Social Science and Medicine 50, 605–617.

The “R” word

Aside

Remission. Hearing the word always made me think of cancer and the hope that goes along with achieving remission. Having served as a volunteer and a member of the board of directors for a cancer non-profit organization for seven years, I shared many moments of joy with many cancer survivors for having achieved remission, the “R” word. During treatment it is the hope, but often not spoken of until you finally get that word from your medical team. Little did I know that the “R” word would enter my world in the way that it did – through my daughter’s IBD diagnosis in August of 2010 at the age of 9. Upon hearing that it was Ulcerative Colitis ravaging her body, consuming her childhood, and sapping her energetic persona I became a mother living for the “R” – remission.

Jennie | Story of Self

Posted on 19 July 2012 by jendavid91

Years ago, a doctor asked me to draw a pie-chart and shade in how much Crohn’s affected my life. I remember hesitating and then looked up and said it was impossible. There was no way to decide where my life and my Crohn’s didn’t walk hand-in-hand, they were as intertwined as written words on paper. Alone it might just be blank pages and a pen, but together they make a story.

I had just turned 12 when I was diagnosed with Crohn’s disease. This is what I remember most about that time: being scared, confused, alone, angry, lost, lonely, and feeling robbed. I didn’t know what Crohn’s was before my diagnosis and thought that it meant taking a pill and not eating broccoli. I did not want to be sick, in fact I refused it, and wished that I could rewind the past few months and never be diagnosed.

But a lot can happen in 9 years, and indeed a lot has happened. I tried every medication to little avail, spent copious amounts of time in the hospital away from school and friends, dealt with people’s ignorance about bowel disease, and acquired a medical vocabulary. I’ve lost count of the PICC scars on my arms and the medications I took. I have boxes of medical ID bracelets and needle caps and finger puppets (the reward for a blood-draw at my pediatric hospital). And even though it’s an enviable collection, what I am most proud of is being involved in awareness and advocacy through Crohn’s and Colitis Foundation of Canada (CCFC) and our Youth Advisory Council (YAC) here.

When I was applying to college, people who didn’t know me well would timidly warn me, “Oh you should stay at home for school. You’re sick”. I absolutely hate being told what I cannot do, because no one else can tell me what I’m incapable of. I left Nova Scotia for Boston University, where I’ll be a senior in the fall. I’m studying Psychology and plan to apply for a clinical PhD in pediatric health psychology in the winter. It’s a mouthful, but I want to be a pediatric psychologist for chronically ill children.

After my freshman year at BU, I became extremely sick during the summer. I had spent so long feeling unwell that it seemed ordinary to me. My GI scoped me and saw the inflammation in my colon was severe and the bowel had begun to die. I was so relieved to hear the news because it meant that something drastic would finally be done. I chose to have a proctocolectomy (aka everything after the small intestine is gone) and a permanent ileostomy. I love my bag so very much, it was the right choice for me and my disease, and wouldn’t trade it for the world’s best working colon.

I think that one of the hardest parts about living with IBD is understanding that it’s chronic. I don’t think we ever have a solid understanding of the word since there is virtually nothing in our lives that is stays the same forever. We grow, we move away, we meet new friends, we watch new television shows. Even though it’s been almost a decade of being an IBDer, there are still mornings when I remember my ostomy and can’t believe what’s happened to my body.

I was recently in Peru to hike Machu Picchu to raise awareness about IBD and ostomies. People asked me if it were possible go back and take away my Crohn’s if I would. I said no, because I wouldn’t trade the clarity that living with IBD has given me on my life and what I want to do for anything. I am not my IBD, I’m just a girl who likes to run, loves Patrick Dempsey, and could probably win a banana-eating contest. And everyday I do my best to live by the words I wrote to myself after being diagnosed, “You hope to rise above your disease and excel”.

Jennie