“Actually,” I asked. “Do you have a smaller tegaderm to put over my port?”

The nurse, who’d already begun to open the larger salty green colored package stopped, looking up at me, and asked another nurse in the room to grab a smaller dressing.

Throughout college, I worked in a research lab studying coping strategies of women who are HIV+, and one thing that we looked for in each participant was ‘mindfulness.’ To be mindful is just what you might think: being conscious of what’s going on, what you need, and what others need around you. Mindfulness is being in the moment, although not so much being spontaneous as being considerate to yourself and to others. If you ask me, mindfulness is one of the hardest skills to train yourself on and put into action.

If ERs gave out awards to their most loyal customers, I’d be a no-brainer for the #1 Customer award. But, since I live in reality, I collect medical bracelets in lieu of my big award.

Ending up in the ER on a Wednesday around midnight was an unexpected way to spend the night. When my Dad and I started walking toward the way-too-familiar ER entrance, I turned to him and said, “This is how I spend a night out on the town.”

Jennie: 0, Body: 1

Ironically, my ER-dash had nothing to do with my Crohn’s, but rather a separate condition that leaves me prone to blood clots. I’d developed some chest pain earlier in the evening and given my odd combination of past history with clots and the fact that I'm now working in cardiac surgery (and being all too conscious of heart problems), my parents and I figured safe was better than sorry, even if it did mean adding another metaphorical stamp to my ER frequent flyer card.

FYI: Chest pain is like the golden ticket in the ER – you whiz right in and before you know it you’re strapped to an EKG and instructed to stay still (warning: not an encouragement to report chest pain to triage unless you have it!). For an ER that I’ve spent way too much time in, this was by far the quickest trip to a room yet, and as I was being taken to the room, I noticed a sign that bugs me every time.

STAFF ONLY

Capital letters, bolded, just in case you couldn’t read it on the first go-round. I remember the first time I saw such a sign, in my elementary school, walking by the staff room and feeling indignant. Staff only? I thought to my self. If staff are people who work somewhere, then I’m staff too because I work at school. Why are students not considered staff? Yes, I’ll admit that staff has a more nuanced meaning than simply ‘working’ at a place, but even so it bothered me then and it bothers me now. Especially given that I actually am a hospital employee now, albeit not in the ER, do I dare cross the threshold of the STAFF ONLY areas?

Spoiler alert: I did not stomp through the STAFF ONLY hallways proclaiming that I too was staff, but I did something better. The ER resident assigned to my case was a young, dry-humored doctor who seemed patient and kind even if it was the wee hours of the morning. When he asked for my past medical history, I squinted at him and told him I wasn’t really sure where to begin. I began listing my medical conditions and issues as he busily scribbled it all down, asking some questions and prompting me to recall other relevant medical history. Every addition to the list made him raise his eyebrows and I couldn’t help but laugh as I continued to rattle off problems – truly, it would have been kind of funny if it wasn’t so ridiculous. I intentionally used all of my medical jargon to show him that I knew what I was talking about. He smirked at me and said, “When are you going to med school?”

At one point, he looked up from his paper and said, “You know, I thought I’d come into the room and meet this 21 year old girl with multiple problems and risk factors and she’d be all whatever, but instead I come in here and you’re all bright and happy, I’m just like, I don’t know.”

“Well,” I told him. “You know the body, even when it’s crappy, is incredibly resilient and you can still do everything and do what you want.” I proceeded to tell him about graduating on time from college with double honors, and he held up his hand for a high-five. It’s official folks: high-fiving a doctor has been crossed off my bucket list. And to be clear, it is not that I think I’m extraordinary, but I do think I am normal and I think that is exactly what struck him.

I hope that he remembers me - and the notion that living with a chronic illness is still living - years from now when he’s a little older, a little greyer, and has his own patients without an attending around to keep tabs on him. I hope I taught him something that he couldn’t learn in a textbook. I hope I earned my honorary medical degree by showing him that doctors can and need to learn from patients just as much as they need to work with patients. There may be hallways marked off with STAFF ONLY, but that at the end of the day, it’s not about labels or the costumes of lab coats or Johnny shirts, but rather about the collaborative relationship, the give and take, the listening and the caring between doctors and patients.

Because we’ll get a lot farther if we work together versus working alone.

Jennie

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

Picture this: you’re waiting for class to begin, or an elevator to open, or for a cashier to call you to the counter. Sound familiar? Welcome to my life. With a fair amount of time spent waiting, I often (along with the vast majority of my contemporaries) pull out my smart phone and start sifting through text messages and checking (and re-checking) my email. It kills a few minutes, and before you know it, class is starting or the elevator comes or the cashier calls out, “Next in line!”

Three summers ago after I returned home energized from my freshman year of college, I began a summer job as a babysitter to three one-year-olds. I love kids and these little ones – a pair of identical twin boys and a little girl – were as precious as they come (besides nap time when the boys would cry until their faces were red). I so enjoyed watching them discover the world and interact with myself and each other. I had just started a new biologic medicine before leaving school for summer break – it was going to be ‘the one’ (sadly, ‘the one’ in the chronic illness world rarely refers to a significant other, but instead the lofty potential of a medication to bring on the sought-after remission).

Spoiler alert: it was not ‘the one’ and one evening I found myself at the mouth of a toilet throwing up. I banged on the ceramic tile floor of the upstairs bathroom to get my parents’ attention downstairs in the kitchen, and after they ran up the stairs to see what the matter was, they found me in tears pleading to them that something just wasn’t right. A scope and lots of sedation later, the answer: severe inflammation throughout my colon. There’s a lot of ways to say it, but it came down to one thing – farewell colon.

There was a park a little ways away from the kids’ house and we would often walk there to play (note: a triple stroller with three kids is super heavy!). I recall walking home from the park one day and needing to go to the bathroom, immediately.   I considered going to a random house and demanding to use the bathroom but decided against it. I made it back to the kids’ house and soon found myself housebound there with my three charges, herding them in the bathroom so I could watch them every time I needed to go (which was quite often). Between bathroom breaks I can remember standing in the kitchen with an Oreo on my tongue, trying to find the energy to play with the kids.

The question soon became how did I get so sick so quickly? The answer was complicated – first and foremost, I had never really been well. Secondly, and perhaps more importantly, I had become so accustomed to feeling ill and dealing with symptoms that the feelings of wellness, health, and energy were merely distant memories. I could talk about them, but could not really physiologically remember what it was like to be well. Going to the bathroom existed solely as a horrifying painful experience, but it was my daily reality. And somewhere along the way, my disease had made the transition from uncomfortable and unpleasant to unbearable and unrealistic.

Having Crohn’s isn’t my fault – but it is my responsibility to do my best to take care of myself. After some initial denial, I was a conscientious patient who asked a lot of questions and adhered to my medications and spoke honestly with my doctors.  But I said farewell to my colon anyway.  What had I done wrong? How could I have better predicted the steep descent of the flare that eventually took my colon? Another spoiler alert: it all ended up just fine, as I was able to squeeze in my ostomy surgery a month before my sophomore year; I returned to college that semester and I love my bag. But the whole experience made me think, there must be a better way to track my symptoms so that I can catch myself when I’m starting to slip down the mountain; so I can alert my doctors and put up the CAUTION signs and figure out a strategy to rescue me from a debilitating flare.  You know, even without a colon, I still get flares.

Now picture this: you’re waiting for class, the elevator, or the cashier. You reach for your phone, but instead of texting a friend, or checking the weather, what if you took two minutes to track your symptoms? Well, luckily for us, there’s no ‘what if’ because it is real. It being Ginger.io, a smart phone app and ICN innovation that does a few super cool things. In honor of Ginger.io, I’ve made a list.

Ginger.io is Super-Cool Because…

1) It looks cool – it’s a sleek app that’s easy to use (in research geek-speak: it has a great deal of clinical utility because it’s feasible for participants to navigate).

2) It sends you push notifications when the surveys (which take an average of 2 minutes) are ready to complete, so you’ll never miss a beat.

3) It leverages your smartphone’s location services with the idea that when you’re feeling well, you’re moving all over, and when you’re feeling icky, you’re staying in bed with some Netflix (okay, so maybe the latter is just me….). The app literally tells you how much you travel so you can have a clue as to whether or not your ‘moving and grooving’ habits have changed (but don’t worry, it doesn’t creepily stalk you!).

4) Daily surveys capture the details of whether your pain is getting worse or better, whether you’re going to the bathroom more or less – in other words, it helps you become more conscious of your disease and any changes in your symptoms (i.e., giving you and your medical team the power to stop a flare in its tracks).

5) You get your info – you have a chance to receive a monthly graphic report of your answers to bring to your next doctor’s appointment.

6) It pays! A little moula never hurt anyone! Since you’re helping with research, there’s a financial incentive for every survey completed – and no, it’s not monopoly money!

Would my disease and surgical history have been any different if Ginger.io had been around 3 years ago? Maybe. But my point isn’t about rewriting my history; it’s about my ability to get engaged by tracking my symptoms and about being involved in health care innovation research in a way that is directly beneficial to me (and hopefully many others who live with chronic illness every day). In a busy world, Ginger.io is an efficient use of my time.  I don’t mind spending a few spare minutes here and there to catch up on my health and assess how I’m doing.

Your mission, should you choose to accept it, sign up for Ginger.io.  Take a few minutes to dedicate to your health on a daily basis (and hey, it will come in handy when you’re bored and staring at your phone), it’s an app-solutely great idea!

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

Having your body at the center of ongoing medical scrutiny is not the ideal situation in which to develop an individual and autonomous body image. We make room for scars and side effects, sometimes feeling as though who we are (and who we want to be) shrinks more and more. Developing a positive sense of self and body image is something every kid must face, but especially when it comes to IBD there is a role for everyone to play.

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.

This semester alone, I have heard the phase “all or nothing” easily a gazillion times. Okay, I might be exaggerating here, but what I’m trying to say is that my psychology classes have discussed – repeatedly, at length each time – the ‘danger’ in “all or nothing” thinking. And it’s very true, because things are never black or white, things are not all or nothing. It’s not as easy as saying that someone is sick or healthy, there are grey areas in the middle, that slick slide you find yourself on traveling from one side to the other.

I hear my professors say this – I have proof of this scrawled in my doctor-worthy handwriting – and yet, I watch them crash through the glass walls they just built. Today in a class, a guest lecturer was talking about chronic pain. I know the guest lecturer meant well and he was in truth ultimately very determined to make a difference for those living with chronic pain.

But – some rules of thumb for doctors/parents/anyone reading this: not everyone who will deal with chronic pain/illness is anxious or depressed. Everyone (illness or otherwise) will deal with anxious and depressed moments, absolutely, but that does not mean they present with clinical psychopathology or that it is the heart of the problem.

One of the points this lecturer made was to help encourage positive thinking, active lifestyles, and a sense of control. So here’s an important note – if you want patients to have positive thinking, the doctor has to be positive with them, if you want patients to have a sense of control (and better yet, not just a sense but actual control), then a doctor has to be willing to share. It’s not all or nothing, it’s not you versus me, it’s us, here together – the ‘chronic’ should be a hint that there’s a plethora of time together. So use it wisely.

With each passing lecture, the urge to stand on my chair and shout (no, not ‘Captain my captain’, though that would be pretty awesome) “Hey you, listen, I’m a patient and I disagree. You can’t judge me or make blanket statements about me and all patients because you don’t know me.” This might cause massive disruption to the class and/or result in a stern conversation about being adults and not interrupting others when they’re speaking. But, like every kid knows, if you don’t have anything nice to say, you shouldn’t say it at all.

Sometimes I think people forget that patients are not lab rats. We’re not a separate population, smushed somewhere between children and adults. It’s like wearing one of those really itchy and constricting outfits for a family function and all you want to do is rip it off, but that would be impolite and people might stare so you smile tightly and keep your mouth closed. It is so polarizing to say people can only be a patient or a doctor, no in-between space, or shared community or feelings or beliefs. One or the other. All or nothing.

So I will stand up metaphorically on my chair (though, in reality, this involves me typing passionately at my computer) and declare that I am not just a patient, it is not black or white, not every person with a medical issue experiences anxiety or depression or is incapacitated crying ‘why me’ in a corner with a sappy violin playing in the background. Most of us are strong and capable and fighting – we’re advocates and whole, real, amazing people. We are every color imaginable, because black and white is boring, we are everything because to be all or nothing is belittling and untrue. We are loud, and we will never be quiet.

Jennie