About samisophia

I'm Sami Kennedy. I was a 2012-13 Patient Scholars for the Patient Advisory Council (PAC) for ImproveCareNow, and now co-chair the PAC. I was diagnosed with Ulcerative Colitis at 14. I'm a junior undergrad studying biochemistry with dreams of becoming a pediatric sub-specialist physician (maybe a peds gastroenterologist!). I'd love to hear from you!

Who is an advocate?

In honor of IBD Awareness Week, which wrapped up on Saturday, I thought I’d come back from my blogging hiatus and talk about what it means to be an advocate.

Over Thanksgiving break, I had a revealing conversation with my mom about my life in high school with ulcerative colitis. Her memories of how I coped with UC are not always how I remember myself coping. There were things that I heard from her perspective for the first time, and some of them were hard for me to revisit. I was reminded that I was once a vulnerable high-schooler – and while this is/was true for all of us, it was nevertheless hard for me to be faced with things from my past that I had unknowingly blocked for years.  I remember how much I once idolized many of the ‘popular’ IBD bloggers. I didn’t really begin regularly reading IBD blogs until my senior year of high school, but once I did, they had a strong influence on me. One blogger ran a few opportunities for her readers to submit to group projects, and I emailed her a submission once. I remember just glowing when she responded. Of course, I realize now that she’s just a normal young woman like me with IBD, but she was a celebrity to me then. It was around this time that I first started to imagine that just maybe I would one day be like her. That I could be an advocate, too.

That idea was fleeting, though. All of ‘my bloggers’ were writing from the battle lines – living with aggressive Crohn’s or UC. As for me, despite a rough time early on and a small flare that year, it was smooth sailing since then.  (Read my story here.)  An advocate was someone with a heart-wrenching story, who understood IBD vocabulary inside-out and upside-down, because they had experienced it, well…chronically. Who was I to imagine myself as an advocate?

At the ImproveCareNow Learning Session in October, a mom stopped me and Jennie David in the hallway to thank us for our posts. She said her pre-teen daughter, who has Crohn’s, reads LOOP and wants to be one of us when she grows up. It was another moment in which I found myself glowing with pride, but as I walked away, I suddenly felt weak and out-of-place. It brought out a guilty feeling I’ve harbored since I began my work with ImproveCareNow. A sister to survivor’s guilt - I’ll call it ‘remission guilt.’

‘Remission guilt’ is the guilt of knowing that I am living very well when others – with my same disease and who are equally adherent and health-conscious – are very sick. I had a particularly hard time shaking ‘remission guilt’ when I was selected as a patient scholar for ImproveCareNow. Who was I, a healthy college student with absolutely no limitations because of her disease, to represent thousands of much sicker kids with IBD? At the first Learning Session, it was Jennie who helped me shake off this guilt. She assured me that our passion mattered, not our histories, and the growth of our friendship despite our differences has reinforced this for me.

Recently, though, as nearly all of my friends with IBD flare while I remain as healthy as ever, I’ve been struggling again with ‘remission-guilt.’ It’s part of the reason you haven’t read much from me recently (along with heaps of schoolwork and other PAC responsibilities). I have a tendency to doubt myself, to ask myself whether I think too much of myself. After that conversation with the mom in the hotel hallway, a part of me froze up. Who am I, I’ve asked myself numerous times this semester, to act like I can understand what my friend is going through when it’s been over four years since my last bad flare? Who am I to claim to be an IBD advocate when I probably can’t even remember what the pain feels like?

And most of all, worst of all, there’s the ultimate question that every other question boils down to: Why isn’t it me who is suffering?

I start to feel unworthy. A little voice in my head whispers to me that I don’t deserve to be an advocate. I should graciously accept my health and move on with my practically-normal life – but of course I can’t do that. It’s what I mean when I say that I sometimes feel like I’m neither healthy nor sick, but in a boat between two islands. There are days I can’t relate to

Sami illustrates how she feels like she's somewhere in between sick and healthy.

some of my more carefree friends at college, but honestly there are days when I can’t relate to my friends with IBD either. I hope you enjoy this rough sketch of my predicament (it’s a wonder I’m not in art school).

So here’s to the end of the semester, another year filled with health, continued hope for health for my friends, and a goodbye to ‘remission guilt.’ Whoever you are reading this – whether you have or don’t have IBD, whether you are in remission or a flare, whether you have the most devastating or the simplest of stories - you are an advocate if you want to be an advocate. It is a choice and not a badge you earn through a certain type of suffering. IBD Awareness Week is technically over – but we need 51 more weeks of awareness and advocacy. We can ALL be part of that.

Over Thanksgiving, when I sat down with my mom and talked about my early days with IBD, I remembered the bloggers who I looked up to with such reverence and it occurred to me that perhaps I was defining advocate all wrong. I didn’t look up to ‘my bloggers’ because they had heart-wrenching stories. In fact, in hindsight, what an insult it is to define someone by the course of their illness. I looked up to them because of how they lived with what they had; their confidence, their fearlessness, and their willingness to open up and display their most vulnerable selves for anyone to read. It didn’t matter that their stories were different than mine. It’s been a slow process to realize this, but they were advocates and I admired them because of who they were, not what they had or had been through.

listening, magic, and a little paint

At the last ImproveCareNow learning session, a mentor gave me a piece of advice I’ve carried with me since: “As you go forward, no matter how much training you have or how brilliant you are, never assume you know best. Always listen.”

ACH

On Saturday mornings, I work as a child life volunteer at Arkansas Children’s Hospital, where I follow a variation of the same rule. I play an important role, but before I knock on each and every door, I tell myself that I come last. I am there to listen and try to make make magic happen; no matter how much experience I think I have, the kid is the expert. When I enter a room on the unit with my bag and my clipboard, I am a stranger. By time I leave, I’d like to be a friend – a goal not always attainable, but always set. I try to listen more than I talk. I pick up on the little things. Would she like glitter paint more than regular paint? Princess coloring book or puppies? Should I drop a sheet of stickers in my bag before I come back?

Saturday morning, I met Tyler (name changed) who didn’t look like he was having the best day. He was eight and hanging out with his video games, but I’ve become pretty good at distinguishing bad day faces from good day faces – and this was a bad day. I crouched down by his bed and did a run-down of “my collection” in the playroom. With Tyler, his face lit up when I suggested paint, and so I knew what to suggest next. These are the moments where that goal of making a special connection becomes possible; with the right words and the right timing, I can make a hospital room glow. It’s a kind of magic all its own, but one that anyone who works in a children’s hospital should recognize.

“Hey Ty, I have an idea.” He looked up. “I can bring you some paper to paint.” He nodded. “But do you like to paint other things too?” He looked at me funny. “Well, sometimes, I let kids I really like paint my face.” This is technically a lie – only one other kid has painted my face in the hospital (his hilarious doctor’s idea actually) – but Ty didn’t need to know that.

Ever seen a YouTube video where a kid is asked if they’d like to leave for Disney World in about five minutes as a total surprise? He said yes with the same enthusiasm. To be honest, I didn’t expect quite such a dramatic response.

His lunch came right at that moment, so I excused myself to finish up my rounds – and encouraged him to eat up. I’d be back soon, and he had work to do then.

Thirty minutes – and several delivered board games and art supplies – later, I was back in Ty’s room. “Ready, bud?”

I’m about to show you what happened next – but the best part, and what I can’t adequately show you in a photo or even really describe, was how much of a kick he got out of it. He had this mischievous laugh that led one of the nurses in the hallway to peek her head in to see what was going on. When he finished his artistry, he sent me onto the catwalk – or out to the unit hallway, if you’d prefer to call it that – to show me off to the nurses. Finally, I was allowed to take a look in the mirror. (Thanks to my PAC co-chair, fellow blogger, and texting bestie Jennie David for the photo comparison!)

Sami-face-paintI asked Ty if I could hire him to do my make-up for Winter Formal, but sadly, his schedule has no openings right now.

I get to do this every week. I get so excited about it, which always leads to questions about why I volunteer with sick kids. How could I want to start my weekend in a children’s hospital. Isn’t it sad. Statements, not questions. I do not deny the sadness, but I have had the privilege of seeing so much happiness. I might come last, but the joy I have at the end of each shift makes me feel like I am first. My work with ImproveCareNow is remarkably similar. You know my name and you hear my stories, but I want you to know that I’m here not just for me, but for every patient – your patient. I represent, but I’m last. I know it’s a sentiment that Jennie and I share, and the code by which we work.

I’ve stopped trying to guess what’s ahead for me. My life is changing by the month these days. But I hope that, even as I grow and evolve into new roles, I’ll always know how to spark the magic that can get the room to glow. I want to be brilliant as a physician, but more than that, I want “my kids” to feel brilliant.

Healthier Together

It’s no secret on this blog that Jennie and I both adore Taylor Swift, but I perhaps admire her liner notes more than any particular lyric. One in particular inspired me to share my story, even when I felt like I had nothing worth sharing:

“There is a time for silence. There is a time for waiting your turn. But if you know how you feel, and you so clearly know what you need to say, you’ll know it. I don’t think you should wait. I think you should speak now.”

Jennie and I have a secret theory that T Swizzle is an ImproveCareNow supporter all the way. “We Are Never Ever Getting Back Together” is just too easily about a colectomy. Alas, we are currently without any proof to back up our theory, but like any of her songs, it’s quite obvious Taylor wrote the above quote with inflammatory bowel disease and ImproveCareNow in mind.

Taylor was writing, of course, about the Healthier Together campaign. She – and we – want you to speak now. Every family connected to an inflammatory bowel disease patient has a story to share – and we want need to hear and share those stories.

Networks like ImproveCareNow are leading the way to ensuring innovation, quality, safety, and value for every patient, every time. We’re all about engaged care, empowering patients, families, care teams, and researchers to work together and share information seamlessly to drive improvements in the care of kids and teens who deserve a fantastic quality of life and a cure. It’s not just your doctors and nurses who are the catalysts for change. It’s all of us – little and big. When we work together, kids with IBD get better, faster.

Healthier Together is a movement to support ImproveCareNow and other collaborative health care networks.Healthier Together is a movement to support ImproveCareNow through the collection of 1,000 statements of support by September 15, 2013. What can you do? If you are a patient with IBD, a family member or friend of a patient with IBD, a clinician, a researcher, Taylor Swift, really ANYONE, you can (and should!):

  1. Visit and share www.healthiertogether.org.
  2. Write a letter (or even just a sentence or two)! Why do you believe it’s important for patients, parents, care teams, and researchers to work together in a learning health system like ImproveCareNow? Short, long, poetic, epic – anything goes!
  3. Create a video! Let us hear your story. Make it a collaborative effort and interview your care team. Gush about your dreams for IBD care and how learning health systems like ImproveCareNow can help make them a reality.
  4. Draw a picture! Too young to write? Are you an artist at heart? Not sure how to put your thoughts in words? Show us your vision for collaborative care and why it matters for inflammatory bowel disease patients and families.
  5. Take a photo! Hold up a sign, show us a memory, or let your smile speak for itself.

All letters and media can be submitted at www.healthiertogether.org. Photos can also be tagged with the hashtag #healthier2gether on Instagram (follow us @healthier2gether, too!)

Jennie and I share our stories all the time, but it’s not enough. We need the little stories, the big stories, the crazy stories, the boring stories – because no story is ever unimportant. Write it or draw it or speak it into a video camera or post it on Instagram, but whatever you do, I don’t think you should wait.

Bonus points to anyone who can get Taylor Swift (@taylorswift13) to submit a post to the Healthier Together campaign.

S+J

because these things will change.

Sami_scope

Hey.

Breathe. I know you want to scream right now, because it hurts so bad. I’m sorry.

I know you struggled to sit through that presentation. I know you didn’t leave because you were afraid you’d get in trouble. You didn’t want to be embarrassed. You wouldn’t know what to say. You have diarrhea and it’s really bloody, and I know that scares you. I know there’s no way to say that easily, so you keep quiet. Some days, it’s just blood. I know you wish you could talk about it. One day, you will.

I know you’re scared. Scared that next time, you won’t make it. Scared that the line outside the stall will start to get impatient. Scared that everyone will notice it’s you giving off that smell. I know you wish you had more hands, so you could plug your nose, grip the rail, and hold your aching belly at the same time. I know you worry that one day, the pain won’t pass, and you won’t be able to wipe and stand up and just leave. You don’t know what you’ll do then. You’re scared to look down, afraid of what you’ll see. It’s getting worse. The doctor said it would get better. I know it doesn’t make a lot of sense to you now. You’re eating only the most basic foods. It’s a bagel every day for lunch, maybe white rice and a banana for dinner. You’re staying hydrated before you run. That was supposed to make it all better. No matter what you eat, the pain makes you moan and cry and scream, but you know you get through it every time. You’re going to get a break soon. It will be okay.

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You’re going to face something even worse than that pain, too. Bad doubt, worse than the worst of your pain. It will hurt you more than anything. Trust yourself. Your pain is real, and you are not weak. You are loud and smart and spunky. Be that girl, even through the pain. I know you think letting people do nice things for you will make you not-a-grown-up, but let them. It’s not baby-ish to need a hug or do a silly craft. Keep that in mind…say, two weeks from now. That was a hint. Hey. Really. You’re being more of a grown-up than you know right now, even right within that stall.

I’m sorry. I’m sorry that the field trip you’ve been anticipating for months had to go this way. I’m sorry that you couldn’t eat at lunch. I’m sorry that when you get on that school bus to go home, you’re going to sit alone and lay your head against the window, clutching your stomach, wincing with every bump in the road, hoping you see the school before it’s too late. I’m sorry that when you go to track practice, you’re going to be the last runner to cross that finish line again. I’m sorry that you’re going to have to keep running all the way inside to the field house bathroom. I’m sorry that you’re going to have to get back in a car to go home. And come back tomorrow to go through the pain and confusion and loneliness again. I’m sorry that you haven’t had the normal freshman year you so badly wanted.

14

I know you’re not wondering why you, but you are wondering why, and I am sorry that even I can’t tell you that. No one can. But, one day, you are going to dream of finding the answers to questions you don’t even know to ask yet. You are going to read books and hear stories about cells and pathways in your body that sound too incredible to be real. But, they are. And you will love those stories so much that you will want to learn every detail of those stories and write your own, too. You will have dreams you cannot even fathom yet. Dreams bigger than the stories and bigger than the pain.

I know it bothers you that I’m apologizing. I know if you were feeling better, you’d probably even be angry that I’m being so unclear about everything. This is our story, and you have to live it out to become me. Believe me, you’ll like who you become. I’m sorry that you have to feel this pain, and that it’s worthy of a letter, but know this: one day, you will speak about this pain, and the crowd will stand up and applaud, and it will be one of the happiest moments of your young life.

Hey. Don’t look down. Just this one time. You know what’s there. Look up. You don’t know what’s ahead yet or even what your problem is, but one day, you’re going to be part of the solution. I know.

Kicking Up Confidence

My lucky parents were blessed with a child who not only won the IBD lottery, but long before that diagnosis, had a severe reaction from eating a nut at age two. Growing up with a life-threatening nut allergy, I became accustomed to standing out from my friends long before my IBD diagnosis – but that is a story for another time. The point here is, I mastered the game of careful avoidance from a young age. Although I was not sensitive to the smell of nuts, I would take care not to even hang out in the same room as any. I was taught well that they were the enemy, and the farther away I stayed, the safer I felt.

So, you can imagine my surprise (read: horror) when, on my very first college campus tour, our guide announced that one of the distinguishing features of the campus was a large courtyard brimming with pecan shells. I stuck to the sidewalk when the group walked through the (admittedly beautiful) pit of possible death, trying hard not to let this unexpected development spoil a day that had been wonderful up until that moment.

I came home disappointed but determined. I returned for a second campus visit prepared. After two rounds of allergen testing (including literally walking into my allergist’s office with a bag of pecans and asking that we rub them all over my feet), we confirmed that although I had not outgrown my oral allergy to pecans, I did not have a skin allergy. So, one year later, I returned to that pecan court – and despite the March cold – donned flip flops and stomped all around that thing. My heart was racing, but I had to prove to myself that I could do it.

Pecan Court as described by Sami I was literally walking, kicking, and dancing through a Pit of Things that Could Kill Me.

But I did it. And nothing happened.

Three years later, I walk through that pecan court at least once a day. And sometimes, I feel a little surge of victory. I can do what I once thought I couldn’t do. Other times, though, I feel a pecan shell slip beneath the sole of my shoe and rub up against my foot – and despite the overwhelming evidence that I won’t react – I still look for a hive to pop up. I am safe – but I can never erase that twinge of fear and doubt.

IBD is similar in some ways.

I have been in remission for over two years. But in that moment I see a red-tinge on the toilet paper, my mind inevitably begins to race off in directions I know it shouldn’t go. I’ll think, ‘This is it. This is the first drop, and tomorrow there will be two drops, and then in a week there will be red all over the bowl, and then I will be on Prednisone, and I should go freak out now.’ I always manage to regain my common sense by the time I finally flush that terrible industrial grade skin-irritating toilet paper away, but the panic never fails to set in for just a moment there. Even now.

I know remission is not a cure, and thus I am always ready to lose it. When I feel an abdominal cramp come on, I know I should go straight to the conclusion that it’s just my menstrual cycle. That’s the most likely conclusion, and for three years, that has been what it always turns out to be – but my mind never goes there first, even now. Perhaps it’s a coping mechanism for when the day does come that I slip out of my remission – as if I think I’ll find comfort in saying, ‘Well, at least I knew this was coming.’

Living with a chronic illness, I am always walking through a pit of danger. Right now, I’m protected, my treatment is doing its job, but I know my armor is unlikely to last me forever. My 6mp probably won’t hold off my immune system until I’m old and gray, but in the absence of a cure, my disease isn’t going anywhere. Even my medications could hurt me one day.

But, just like with my nut allergy, there are things I can do to protect myself. I can take my meds on schedule. I can check in with my doctor every three months. I can be alert to my body and bowel movements so that I catch bumps in the road before they progress to flares. I can avoid behaviors and foods that might trigger problems, and do my best to keep my body healthy and rested.

It’s important to know what I can’t do, but it’s equally important to know what I can do. I can walk through that pecan court. And, with a touch of luck and a lot of cooperation as an engaged patient, I can be an IBDer who hangs on to that remission for what I hope will be a good long time. It’s important to know where I stand, but even more important to walk with confidence through wherever I am – whether it’s the sidewalk or a courtyard of pecans, remission or a flare.

IBD was certainly unexpected and (if I let myself become preoccupied with all the what-if’s of my disease) can be unnerving, but I am walking, kicking, and dancing through it.