The events of the last few weeks have had me reflecting on some things. And while I in no way have the writing skills of the great Sami and Jennie, I thought I would do my best to capture what I have been thinking about.

But a little bit of background for you all. I have been interning with ImproveCareNow through Cincinnati Children’s this summer and I also just experienced my first hospitalization in over 3 years. Throughout my internship, I was focusing on the motivation that drives people to be involved with a patient-focused group like ImproveCareNow.

But now, after my hospitalization, I have been considering what strengthens the motivation. I personally decided that involvement comes down to a natural inclination that people have and that is: people are naturally inclined to strive every day to participate in activities that bring them a sense of purpose and enjoyment. This almost YOLO-like sense of motivation is not limited to a specific group of people. Its human nature to want to enjoy life and its human nature to find and be involved in those activities that bring you happiness.


Some might say being motivated by personal happiness is selfish. However, I read an article last week in the New York Times that Peter Margolis shared on Twitter that really made me think about this motivation. The article makes the statement that involvement is not selfishly based but altruistic and that we need to alter our policy-making because we’re turning acts of kindness into perceived chores. So as one does while reading an article, I made real-time judgements based on my personal experiences.

There are three activities in my current life that I can classify as my top three and of course it was these top activities that I used to develop my judgements. The top three activities I identify most strongly with are: ImproveCareNow PAC, mentoring, and hockey.

I joined the ICN PAC because I loved the idea of getting involved with something that would help other people. I joined following years of failed treatments, during a time when I was really struggling with my IBD. The idea that a personal action could help decrease others’ struggles has no equal competitors for me. While it is true, a group like the PAC could help decrease my own personal struggles, this selfish thought was not what first came to mind. The PAC has had many new members lately, and while each may have a different way of saying it, they all initially described a motivation focused on helping others.

My motivations for mentoring were exactly the same as mine for joining the PAC. I wanted to use my medical complexity to help decrease the unknowns for others. One of my favorite events to attend is Camp Oasis which is basically a week-long mentoring experience. And while there are personal benefits for attendance, I go to help my campers, not myself.

Now hockey is where things get interesting and where my judgements became more complex. As many parents who drive their kids back and forth to sports can attest, seeing an altruistic reason for their child’s involvement is not an easy thing to do. Success in sports is so often measured by personal achievements. Take a look at parents who pay their children for each goal scored, to see what I’m talking about. In some ways I am no different; I play hockey for me. My disease destroyed my ability to play hockey for the longest time. Weak bones from too many steroids, meant a sport played on thin blades with bodies and pucks flying at fast speeds was out of the question. But now that I can, the idea that my body can perform on the level of other “normal people” gives me a sense of accomplishment that I can’t seem to get enough of. So I realize that not all involvement is altruistic but somehow there must be a reason that no matter the motivation, people are still naturally inclined to give their all to activities they want to be involved in. What is it that makes the motivation less important than the actual idea of being involved?

I figure that a paradox has something to do with it. It’s like the saying goes: you don’t know what you have until you’ve lost it. This idea is particularly true for those of us with chronic illness who know that at a moment’s notice our health might change and we may lose the opportunity to be involved as we currently are. It could be as simple as something we ate causing pain that cancels evening activities. Or a flare that puts us on the couch for the week. Living our lives day to day, makes us appreciate what we have while we have it. And it means, if we find something we truly love to do, no matter the motivation behind joining, we are going to put everything we can into that activity because we never know when that ride will end.

I charge all of you to find the things you love more than anything! I hope that the PAC and ICN can be one of those, as I have never seen a group so invested in creating an environment perfectly designed to harness each investor’s strengths.

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