Why it's Time to Redefine Remission for Me
It's been a little while now that I've lived in a state of mostly disease-free bliss. We all know that "remission" still comes with disease-related draw-backs and symptoms (most annoyingly a lovely stint of SIBO this past winter). But for the most part, remission is a pretty lucky place to be.
It's amazing that I've made it this long, and I still marvel at the fact that I wake up each morning and my meds haven't failed me for another day.
Over the past decade, I've only experienced remission one other time. I very wisely used that 18 months to carry and care for my first child. But now that my SECOND child has walked this earth for three years, is out of diapers, and quick to remind everyone that he's a "grown up" now, I'm realizing that I'm still in remission.
I'm STILL in remission.
It's amazing to wrap my head around being mostly disease-free for so much time, but it's scary because I don't know when it will end. The truth is that remission will end at some point. So while I have this disease-free time, and I've already achieved the goal of motherhood -- that on my worst days I thought I may never see -- what's a girl to do? Surly I must make the most of this time.
Which is exactly what I'm doing. This new year brought a new realization that I had focused so much on bringing my two little guys into the world, that I hadn't thought about what life would be like once they got here. In fact, I had lived so many years on the bumpy road to remission, that I just assumed that it would take all of my energy and focus to care for them and myself at the same time. I had my kids, and assumed that they'd be all that I could handle (and on bad days before my second was born, I couldn't even do that).
Now that my two little bundles of joy are superheros with capes, I'm realizing that I may be able to take on being their mom AND take on new and exciting things for myself, too.
Once I allowed myself to start dreaming of new ways to spend my remission status, I started to focus on my body and go to the gym more. I took up running and really liked it. I also started paying more attention to what I ate while in remission, to toy with reach deeper levels of comfort with my day-to-day management of scar tissue. I enjoyed pushing my body's limits a little bit. There were the inevitable set backs, like when joint paint flared or my highly sensitive immune system fell victim to the 9,000 viruses that were passed from my loving children to me.
But there were successes.
Being able to successfully stretch my limits after so many years of playing it safe and experiencing failures brought so much joy and happiness to my life that I couldn't help but wonder -- do my healthy peers know how great their good health feels? Do they bask in the glory of meeting their fitness goals 75% of the time, as I had? Being sick had obviously set me apart from my friends in ways that I -- and they -- had so obviously seen in how I lived my day-to-day life. But now I realized that my life also looked a little different in good health, as well.
While I previously thought of it as "using up" my remission days to carry my second child, and then parent him through infancy, the cautious way in which I stretched my remission status will be no more. Gone is the lady who made most decisions assuming that she was living on "borrowed time" until the next flare.
What is the point of remission if I don't use that time to live life as a healthy person would? Pushing the boundaries of my very strict routine and allowing myself to live "outside the box" reminded me that we work so hard to get into remission so that we can feel the joy of life's successes just like our healthy peers get to do. We work very hard for the ability to navigate life on our terms. By living so cautiously and assuming that remission could end any minute, I wasn't doing my remissions status any justice. It wasn't fair to me.
Which brings me to today. After months of allowing myself to quietly dream up what a future would look like, I told myself: "what would you do RIGHT NOW if remission were guaranteed?", and I came up with the answer: pursuing a career in healthcare.
I've truly loved every minute of my work as an advocate. I hate when my time on a project, or attending a conference, comes to and end. I never want to stop talking with people around me about how we can improve healthcare. Which, in just over 500 words, is how I described what I'd do if given the opportunity to attend Dartmouth College's Master of Health Care Delivery Sciences program. A program that starts for me TODAY!
But wait, there's more! Allowing for a few weeks to settle into my new program, I'll also be starting a new job as a Continuous Improvement Specialist at a local hospital. Luckily, I've spent the past decade working in human services, fine-tuning my skills in process improvement -- an approach to organizing service delivery that healthcare is taking on, as well.
I feel like a kid about to fly to Disney Land. I still can't believe that this is my life. That I get to dream like this. That I had the opportunity to experience the horrible underbelly of healthcare, come into good health, and then get to meet all of the amazing professionals who are deeply passionate about bringing good health to patients... and now I get to be someone who supports their efforts and good work.
I'm nervous and feeling a great deal of "imposter syndrome" when I let myself give into it, but I'm not going to focus on that. I'm going to focus on the fact that I hadn't known that I could live this well while managing Crohn's disease, and I'm so excited for a future that I never knew could be mine.
I'm no longer "cautiously optimistic" about remission - I'm just optimistic about life.
What an amazing place to be.