"Living in the Liminal" by Meghann Johnson

My whole life has been one of living with chronic illness, attending to health challenges and setbacks, while still trying to live as “normal” a life as possible, pursuing the things I want to do and achieve. However, moving forward always seems to be plagued by the concern that my health will rear its head and the other shoe will drop. So, how then do I proceed without holding myself back?

CF has always been my main health challenge, overshadowing most other things - or perhaps being a direct or indirect cause for the many other issues that have arisen throughout the years. In fact, I seem to be one of those special people who tend to have weird health experiences that doctors don’t always understand or know what to do with. (I am that small percentage. Go figure.) Fortunately, the docs and I have all figured it out well enough thus far, as I still keep on keepin’ on. 

That’s not to say that I don’t continue to have random health hiccups that seemingly have no connection to my CF, lungs, or the usual suspects. For example, a few years ago, I started having gray, blurry vision in my right eye, which led to an almost 3-week hospital stay, MRI results showing inflammation in my brain and ocular nerve, testing for everything under the sun, two spinal taps (because they ran out of fluid to test), specialists, trial and error with medication, and a whole lot of uncertainty. The only test that came back positive was for varicella, which they got from my cerebrospinal fluid; so basically, invisible chicken pox/shingles…yep, leave it to me.

Most recently, I got my first kidney stone. When they say it’s some of the worst pain you can experience, they’re not lying. An ER visit led to a lot of pain meds, admission to the hospital, and surgery, which didn’t even bring resolution. They managed to put a stent in, but they couldn’t get to the kidney to treat it, so the stent stayed in. SEVEN weeks later, I finally got in for surgery to treat the kidney stones - after begging for help because I’d been in constant extreme pain for weeks. Now, as I write this, I will finally have the stent removed tomorrow, one week afterwards, and it can’t come soon enough because I’m back to extreme pain. (It’s like my body doesn’t enjoy having a foreign object hanging out in there…hmmm) 

As with both of these cases, and many others, life can be brought to a standstill - or at least a major slowdown. It’s frustrating and inconvenient, and not only is it physically challenging, it brings a heavy mental and emotional toll with it.

With my kidney stone situation, I’ve spent the last two months feeling like it has thwarted multiple plans and life paths that I’ve wanted to set out upon. It most definitely has forced me to slow down. Logically, I know that slowing down and resting is beneficial, but the frustration of having such a lack of control (over and over again throughout my life, when it comes to my health), is hard to reconcile. As this has dragged out over the last eight weeks, I feel like I’ve gone through multiple stages, such as in grief, ranging from anger to acceptance and back again. I will say, though, that I have finally reached a stage of asking, “How does this actually serve me? What can I learn or gain from this?” 

Still, even though I am able to reach a point of gratitude and growth, I have trouble moving towards other goals in life. When I literally have evidence of how my health has shown up and ruined the party so many times, it is difficult to break out of the mindset of “preparing” for it to happen again. I find myself hesitating to commit to certain offers or plans, or I am unsure of whether, or how, to take on a new challenge. 

However, my desire to thrive - and not just survive - is stronger than my fears and insecurities. So, I am determined to find the balance between living the life I want to live and adapting to the unexpected and uncontrollable, without letting it overrule my drive to flourish and live life to the fullest. I just have to remind myself that this, too, as with my health journey, will be a non-linear, ever-evolving process…and that’s ok.