Dearest 13 year old Me,

You want so badly to be brave, but you don't think you are.  Instead, you believe that crying means weakness and guard yourself from others to hide from the feelings of insecurity, embarrassment, and frustration.  Here, where you come to the point of realizing how poor and needy you are, is where you will begin the journey of believing that you are brave.

No, you won’t ever like fruit punch, Nesquick, Jello, being touched in spots that needles go, the smell of anesthesia, or the look of medical equipment.  You will have to encounter these often and will decide down deep in your soul that you will not be overcome.  You will make bracelets to raise awareness that almost all the girls in your high school will wear, and will raise 5,000 dollars for research.  You will run a half marathon. You will graduate Summa Cum Laude. You will be a teacher.  You will have overwhelming support from people you love you.

Having Crohn’s is messy, difficult, sad, angry, emotional, unjust, and terrifying.  You will feel many of these things.  It will be hard because it is these feelings that will betray you and cause the traumatic events to be seared in your memory.  I’d like you to fight to control your mind, to shut the door on unhelpful memories, and to continue to move forward.  Your feelings are valid but they are not the only truth.  They are not who you are.  Who you are is loved.

At the end of the day you will face challenges, and on top of that you will have to battle Crohn’s.  I bet you wish you could catch a break. You feel trapped inside your own body that doesn't quite work right; that may be the hardest part of all.

This is the part where you remember you are braver than you think.

I tell my Kindergartners to make choices that are kind.  Isn't that the Kindergarten explanation for how Crohn's disease works; it causes your body to make the unkind choice to attack itself. Ever since I was 13 part of my daily life is deciding how to manage having Crohn's disease.  I am free to make choices that heal or choices that destroy.

Being a part of the Patient Advisory Council, Take Steps, and CCFA encourages me to make decisions that bring wellness to myself and others.

As the countdown to the ICN Strategic Planning Meeting dwindled, I began to pack my bag for my 30-hour trip to Washington DC. While I was truly excited to see my ICN family and my better half (cough cough, Sami), the summer heat pricked at my cheeks and I could already tell that I was worn out from working and my flare before my trip even began. But anyone who knows me will tell you that I’m incredibly (and sometimes stupidly) stubborn, and so I set my sights on Washington and boarded the plane.

Reuniting with Sami was wonderful! It did involve giving her the wrong directions to where I was standing at first – but we finally found one another in the airport and eventually made our way to the hotel. As an early birthday present, Sami had packed a ‘Twizzlers Party’ (note: my current flare leaves my diet restricted to only a few things, most notably Twizzlers and an assortment of candy). We dutifully ate the candy and caught up on life and all things gutsy - as good gutsy girls do.

Thursday morning found us up early, as the alarm went off playing a Taylor Swift melody (of course). We got ready and headed down to the beginning of the meeting, where a one pound bag of Twizzlers was waiting for us for a flare-friendly lunch (you know you’re loved when!). As always, Sami and I continued to be overcome with delight and excitement at how sincerely patients are considered and integrated into the strategic planning for the network. ICN truly wants to improve care this very moment for children and their families, but they know they need everyone’s input to do it. I think it’s fair to say that we’re all pretty thrilled with the exciting things that will continue to develop in the years to come.

But this post isn’t really about Washington DC or the ICN Strategic Planning meeting. It’s about being nearly 22, fresh out of college and into a ‘real person’ job, and very sick. It’s about my body not working the way I want it too and being simultaneously frustrated and determined. By the time I was ready to head back home, a mere 24ish hours after arriving, my body was throbbing with pain and the dryness of my mouth and quickened pace of my heartbeat informed me that I was quite dehydrated. The thought of the two plane rides home – getting into the airport at midnight and then having to get up early the next day for a doctor’s appointment and work – made me make my ‘this is ridiculous’ face. I just wanted to be home. Well, moreover, I just wanted to feel better.

On the flight from Toronto to Halifax, I found my aisle seat, 27D, where the window passenger was sitting with her multitude of bags. “Do you think there’s someone sitting in between us?” She asked, fumbling with her purse. I shrugged and offered a diplomatic response of uncertainty, suggesting she use an overhead bin to store some of her things. The pilot came over the PA to announce that the flight was totally full, every seat was taken, and to use space as wisely as possible. So much for some elbow room, I thought.

I sat and waited for the middle seat person to claim his or her seat. By this time the plane was largely full, and I was ready for every passing person to point to the seat and slither past me. And then she walked up to the row – she being Ellie Black, a Canadian Olympic gymnast who’s from Halifax. I sat up in my seat, suddenly my heart pounding not because of dehydration but because of my girl crush on this incredible athlete. She pointed to the seat and I jumped out of mine to let her in.

“I’m sorry,” I said. “But you are Ellie Black?” She nodded with a big smile. Of all of the Olympic athletes, I would recognize so few, but the fact that one sat next to me made me momentarily forget about my poorly working body and focus on her. She was kind and lovely and very sweet, happily chatting with me despite her 27+ hour plane journey home from Russia (where she’d been in a competition and taken home two medals). I sat there amazed, 1) that she was talking to me and 2) how incredibly resilient the body can be. It might not seem like it, given that I have no medals or Olympic memories of my own to share, but our bodies had something in common – they are super duper resilient. Hers might be able to do flips and turns while mine struggles with functioning, but ultimately both of our bodies can be pushed to do things most people don’t think is possible.

When the plane finally touched down in Halifax, it was midnight and Ellie and I both blinked awake, having falling asleep mid-flight. I pulled out my agenda book and sheepishly asked her to autograph it, which she agreed to without hesitation, addressing it personally to me. In her script writing, she scrawled, ‘Dream Big’, and handed it back to me, smiling. I thanked her profusely and safely tucked the autograph back in my bag.

Maybe the airplane-gods thought I needed a little pick-me-up, or maybe it was just plain ol’ luck, but whatever it was, it reminded me that even if my body doesn’t work perfectly, I am still a champion, a fighter, and a resilient person. And now compliments of the heart-warming and inspirational words residing in the back of my planner, I can carry that message with me wherever I go.

Jennie

To my 12-year-old, newly diagnosed self:

For a long time, you will regret your decision to tell your parents that you were hurting. You will wish you had kept the pain and the blood and the fear a secret so that you wouldn’t be different and sick.  You will wish it very much, using up your wishes on birthday cakes and fallen eyelashes. But first, let me tell you, you did the right thing and that not telling your parents would not have kept you from getting sick.

As of today, I joined ‘the real world’ - aka started my first real-world-full-time-look-I’m-an-adult-honest-to-goodness-getting-paid job. Today went as follows: 1) I ran into the PI of the study (who’s the head of the division, and who I’ve worked for the past couple of summers) and he gave me a hug (the day was off to a good start) 2) Got my ID badge which officially says “Jennie David, Cardiac Surgery, Research” - AWESOME 3) Found out that my ID badge gave me access to the OR (unnecessary, but totally cool nonetheless) 4) Geeked out with a co-worker over the research studies 5) Nearly drooled on my computer at an abstract that’s being presented at an international conference in a couple of weeks where I’m listed as a co-author.

Graduating from college is more or less synonymous with the phrase, “Here comes the real world!” To paraphrase a speaker at graduation, if this is the real world, where was I living for the past 21 years? The dictionary defines real as, “actually existing as a thing or occurring in fact; not imagined or supposed.” I would therefore like to argue that my entire life has actually existed and occurred in fact and has neither been imagined or supposed - so I would like to believe it’s all been quite real. The question becomes - what does joining ‘the real world’ mean?

For those of us living with chronic illnesses, we joined ‘the real world’ a long time ago, often years before our contemporaries. I would gander to think that ‘the real world’ refers to a certain consciousness, when you are acutely aware that your actions have consequences, that things matter, that responsibilities have weight, that bills need to be paid on time, and that if you put dark jeans in with white laundry you will dye all of your underwear blue. To quote Joan Didion in ‘Goodbye to All That’, a favorite essay of mine (that I highly suggest you read if you find yourself entering ‘the real world’), “That was the year... when I was discovering that not all of the promises would be kept, that some things are in fact irrevocable and that it had counted after all, every evasion and every procrastination, every mistake, every word, all of it.”

Definitions are, in virtually every way, relative and changing. Entering adulthood is different for everyone, just as living with an illness is or even a person’s preferences for candy. ‘The real world’ - or the awareness that you have a choice in making things the way you want them - isn’t something that’s prescribed only to the cohort of recent college graduates, it’s something that can happen at any time to any of us. For me, I was 12 and newly diagnosed and began to realize that I had the ability to define what Crohn’s meant for me and to defy what others thought it meant.

There is a difference between being chronically ill (a physical reality) and living with a chronic illness (the emotional experience). Today, in the midst of loving my new ID and reading over papers, I was temporarily bothered by the psorasis sprouting along my arms and legs and the ache in my abdomen compliments of my inflamed guts grumbling. Does it mean I didn’t enjoy my first day? Does it mean I can’t be successful at my job? Of course not. I’m just a girl who has a lot of goals and dreams and will work my butt off to get there - step one, doing my best at my research job, step two, getting where I want to go. I’m someone in my own right, and my Crohn’s fits in, but it does not define me in and of itself.

I remember the first time I ever heard the term ‘glass ceiling’ and thinking it was a funny way of talking about limitations. After all, even if it’s a glass ceiling, you can see the sky, so is it really that bad? But I think that’s the point - you can see what’s out there, but you’re boxed in and can’t get out. We all have preconceived notions about what it means to live with a chronic illness - we might think it means we can’t have a job, or a significant other, or move away from home, and so on. But at the end of the day, we are free to choose our own definitions - and they can change - and we are free to defy the expectation that a life of illness is a life of suffering.

So go ahead - defy expectations, define yourself according to yourself, shatter those glass ceilings. You’re already living in the real world, so go out there and do a downright gutsy job of it.

Jennie

I’m a health care researcher interested in making health care work better for kids with chronic illness.  My sister has Crohn's disease and my daughter was just diagnosed last year with Crohn's disease.

Twenty five years ago, my sister was diagnosed when her intestine burst. Her bowels were so obstructed and inflamed, that they started leaking into her abdomen. After her first surgery, she found kind and wonderful doctors. My parents did everything they could for her. But her journey was rough. She ended up having three surgeries, a TPN feeding tube, losing all but 3 feet of her small intestine, and having way too much physical and emotional suffering. She never took her meds because she didn’t think they did anything for her. She felt completely alone and was convinced no one could help her.

Because my daughter is part of ImproveCareNow, her experience has been different. She was connected early on to other kids her age with Crohn’s. She learned how to track her symptoms so she and her doctor could determine that her meds were helping. And she collaborated with her doctor to figure out that Carnation Instant Breakfast helped reduce her fatigue. I’ve connected online with other parents for ideas about how to help and have shared this information with her doctor. Things aren’t perfect, but my daughter has been able to bear the burden of Crohn’s more lightly, in large part because of the way that ImproveCareNow has enabled us all to be more active partners in helping her stay healthy.

Taking ImproveCareNow to the next level is crucial.  I want to make a world where everyone can be part of the solution.  I intend to continue to work to make it easier for more people to make a difference for their health or the health of their children.

Michael

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.

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.

“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. 

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.