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.

Gutsy Friends + Geeking Out + Taylor Swift = A Great Weekend

Posted on 20 October 2012 by jendavid91

I was standing in a dimly lit ballroom, full of researchers in their weekend clothes, eating celery when I saw her coming towards me. Her being my friend and fellow PACer Sami, a backpack on and a big bag over one shoulder, a wide grin breaking on her face. We ran at each like you see in those slow-motion movie scenes, met each other in a big hug, then, smiling at one another, introduced ourselves in person for the first time. This is the funny thing about gutsy people meeting – we know each other in a way that others don’t, even though we’d never met face to face. And just like that, it was a gutsy friendship at first sight.

We were abuzz with excitement in the nerdiest way – surrounded by researchers and GIs – we couldn’t keep from smiling at the scene. The ImproveCareNow Learning Session was completely novel to me in how Sami and I, as the two C3N Project patient scholars, were included in a conference designed for researchers. It was sort of like looking over the fence into someone else’s backyard, and all of the researchers were more than welcoming and excited to have us there. In case it is not abundantly clear by the end of this post, I am a huge researcher groupie – like huge, I was geeking out the whole time – and was so thrilled to be a part of the Learning Session.

Sami and I begrudgingly discovered that we had been given individual rooms – a thought which would likely please someone else but not us – so we decided to remedy the situation and move her things into my room (because it would have been a tragedy to have lost bonding time!). The first night we stayed up way past our bedtimes sharing stories and showing off the things we had brought to put on our storyboards. Finally by 1:30 AM, we conceded that it was probably time to go to sleep since we had to rouse ourselves at 6 AM, so we climbed under the covers and said good-night.

Saturday was filled with so many incredible things that it’s hard to recount them all, for any words I pick cannot accurately describe my enthusiasm or the entire experience. Having been given access to the Twitter account so we could send real-time updates, I became (even more of a) Twitter addict, tweeting everything from that first breakfast (Chicago was so ready for me with all of the bananas!) to quotes during the opening remarks. As someone who has IBD, it was really humbling and phenomenal to see all of these dedicated researchers and doctors working to improve care in pediatric IBD. I have found myself over the years struggling to establish medical legitimacy for my disease, and yet amongst this group, everyone understood, encouraged, and believed in youth with IBD – it was unbelievable.

We got to attend a session with parents and it is something I will never forget. Their faces were bright with enthusiasm, their children so young and hopeful, but their futures unsure. There was relief in their faces when they saw me and the other patients – knowing that their own kids with IBD would be okay and happy and smiling and at school and living life. I had never thought of my parents in that way before – the uncertainty, the fear, the love for their children – and I was incredibly touched by their compassion and insight into what it is like when your child has IBD.

The patients and parents had set up storyboards on the periphery of the conference room, and I would peruse them with Sami at my side, the two of us falling in love with all of the children. There is something odd and unnameable about looking at a child and knowing some of the IBD challenges in his or her future – those nights when there’s nothing to do but cry, days in the hospital falling asleep to daytime television, and times when the very thought of leaving the house seems impossible. But I know too that there will be moments – bigger and greater than the moments of pain – where the world will open right up for these kids and they’ll be unstoppable. I wish I had met them in person – but that can be my next trip to meet my little IBD crushes.

For the last day of the conference, Sami and I had been asked to choose our ‘IBD theme song’. On Saturday night, Sami and I laid on our bed, exchanging song options until we had found the perfect ones. The big reveal of our IBD-theme-song-extravaganza had been saved for the very last part of the conference, and we handed over the songs on a USB stick. But when it came time to announce the songs, instead they called Sami and I to the podium. We got up and began to laugh nervously as we threaded our way through the sea of chairs and tables. Sami went first and played ‘The Fighter’ by Gym Class Heroes and we began to dance at the front of the room. Upon introducing my song, I explained that it was an ode to my colon – and ‘We Are Never Ever Getting Back Together’ by Taylor Swift began to play. The researchers laughed and clapped as Sami and I began to dance again and we were laughing with them.

It was the conference I’d be looking forward to for so long, enjoyed so much, and was over way too soon. Before I could blink, I was sitting on a plane bound for Boston. All of my roommates were out when I came home. I unpacked and called my parents, telling them all about the trip and the countless amazing things that had happened. The next day, I went to the gym and just before I put my headphones in, a certain song came over the loudspeaker and I couldn’t help but grin. ‘We Are Never Ever Getting Back Together’ was on and I briefly considered taking out my ostomy and dancing, but felt that the joke would be lost on my college peers. I put my headphones in, the smile stuck on my face, thinking of my weekend and the great things to come for all pediatric IBDers.

Jennie

Great Points

Posted on 19 October 2012 by samisophia

I’ll start by saying writing this post has caused me internal agony – and I’m not talking about the gutsy variety, but more like the heart-wrenching writers’ block variety. Why? I’ve been asking myself that from the time I first sat down to write this in the airport nearly two weeks ago. I think it’s because I still can’t comprehend that the Learning Session (henceforth known as ICNLS) is over.

As the inaugural Patient Scholars, Jennie and I traveled to Chicago the weekend of October 5 – 7 to work, learn, and represent the PAC, ImproveCareNow’s Patient Advisory Council, at ICNLS. The “pack” is a group of motivated high school and college students with IBD, dedicated to paying our experiences forward to benefit ImproveCareNow’s interventions and the next generation of pediatric IBD patients.

ICNLS is a semi-annual opportunity for clinicians and researchers representing ICN care centers around the country and London to come together to share and inspire each other. This Learning Session integrated Jennie and myself as PAC representatives to learn from the team presentations, participate in PAC leadership brainstorming sessions, and interact with the care teams. As the commencement ceremony of our initiatives as Patient Scholars, we hardly had a moment to reflect on our incredible circumstances. Yet, despite the restless nights spent in awe of our company, I couldn’t have asked for a more energizing weekend in IBD wonderland.

Exhilarating. Fast-paced. Wonderful. Inspiring. Incredible. Over. When Jennie and I danced to “We Are Never Ever Getting Back Together,” a song Taylor Swift wrote especially for Jennie’s dear and departed colon, we didn’t yet realize the words would later hurt. For the record, I don’t expect to never ever see you again, but even six months can feel like forever when you know what’s out there. A group of strangers never felt more like home. Thank you.

The theme of the Learning Session was Transitions, in hindsight even more appropriate than I initially realized because the Learning Session itself was a notable transition for me. A Great Point.

The first Great Point in my IBD career was The Diagnosis. My first night in the hospital I spent in room 310. Vulnerable. Alone. Guilty. Feelings I should have never felt, but I did. Vaguely hopeful. For what? I didn’t know then. Remission? I didn’t realize I could or expected to engage in a deeper goal. I thought Moving On meant fighting IBD until I felt as if the whole dirty mess had been a crazy dream. I wasn’t a sick kid, not in my stubborn mind. There have been other significant moments in my journey since then (scopes, Camp Oasis, the first enema, the Prednisone Disaster of 2009, learning that perms do not in fact make steroid face look any better), but none as life-changing as The Diagnosis or worth the title of Great Point.

Until now.

I wish I could’ve known I’d spend two incredible days in a much nicer room 305, only five digits and (less than) five years off. I wish I could’ve heard the sound of Jennie and I laughing on the twelfth floor of our grand hotel in Chicago, sharing stories about flying with Miralax and ostomates climbing literal mountains. I wish I could’ve felt the rush of our breakout sessions, planning our initiatives for the coming months, feeling the most beautiful kind of butterflies in my stomach rather than stabbing pain. I wish I could have seen Molly, Diane, and Sydney holding up a beautifully ridiculous little sign in the airport and us laughing as we walked to the hotel – the beginning of the next Great Point. I would have smiled more. I would have reached out more. I would have felt okay more. Perhaps I would have known too much. Perhaps I needed the struggle to know why I’m working for change.

ICNLS is over, but this is just the beginning of a new Moving On. A more beautiful and hopeful Moving On.

Are you ready? We are.