Medical zebras are much like the phoenix of lore. We’re constantly rising out of the ashes, only we don’t have the benefit of renewal by the fires in which we burn. Perhaps I’m being a bit dramatic, but if you’ve ever experienced a life threatening event due to chronic illness and come out on the other side, it feels just as triumphant.
When you live with chronic illness long enough, you realize you not only have to survive, sometimes you have to reinvent yourself to keep going on. Sometimes you even have to do things that you know will make you burn eventually, but there’s simply no way around it.
That’s sort of how I felt when I accepted a part-time job in a movie theater when my husband became too ill to work. It sounds easy enough, but for a person who can go into anaphylactic shock from someone’s perfume, working with the general public at an entertainment venue is akin to playing Russian Roulette.
I lasted longer than I thought I would. To be honest, I didn’t think I’d make it a day, let alone 6 weeks, but providence was somehow on my side. How long I lasted actually gives me hope. My joints and fatigue levels seemed to rise to the challenge and each week I worked became a little less painful and a little less enervating as my body began to adjust to working 7 hour shifts on my feet. Regardless, I still ended up accumulating damage rather rapidly and by the time I threw in the towel, I had several joints that needed to be rehabbed.
Despite the issues, it’s a testament to how far I’ve come. It’s hard to believe it wasn’t all that long ago that I spent only a few hours out of bed everyday and relied on a wheelchair when leaving the house. Even the ways that my MCAS symptoms are improving is cause for celebration. I may not be far enough along to handle the cloud of cologne that permeates every crowd yet, but had I been able to wear my mask to work, I might still be working there today.
Only it wasn’t just my MCAS that was a problem. It also created a big revival in the level of head pain and neurological dysfunction I have to deal with. In fact, it’s been the hardest side effect to working that I have yet to overcome. I’m getting closer, but I’ll report about that later.
Still, I consider it proof positive that with the right therapies, trifecta zebras like myself can live almost normal lives, even after they’ve hit that terrible rock bottom brought on by decades of misdiagnoses. Been there. Done that. Designed the T-shirt to bring awareness of it. Of course, the most important thing is that we find what we can and want to do that will best complement our unique issues.
I think it’s going to change my approach with the Zebra Pit. I love writing it and I know many are hoping the Zebra Pit makes a triumphant return. The thing is, I want that too, but I also want so many other things. I have goals and ambitions. I have creative projects tugging at the hem of my skirt, begging to be the next in line. I still want to write that great American novel, the most astounding musical of the twenty-first century (believe it or not) and a poetry book worthy of awards.
I may be at my healthiest I’ve been in a decade, but I have no illusions about the length of my life span or living well into old age. I’ve had too many spontaneous bleeds, heart issues and cancer scares to believe that old age is a dominion over which I could reign. Even the findings of my spinal tap point to a fragility and morbidity that can’t be denied. I will by no means be the stout, crazy old lady I desire. I will not live to 94 like my maternal grandmother and great grandmother, but rather die at 49 or 64, like my sister and mother.
While I accept this fate, I refuse to “go gentle into that good night” (Dylan Thomas). For that reason alone, I will keep researching and looking for solutions to my health problems. I will even continue to share that work here, but it can no longer be my central focus. I’ve healed enough of my cognitive deficits to make an attempt at larger works. I’ve come far enough that I can begin chasing my major life goals once again. I owe it to myself to take advantage of that. We all deserve to chase our dreams in whatever way we can.
Over the next several months and possibly into the end of the year, rather than writing a lot of new stuff, I will likely dedicate my time to revamping The Zebra Pit, from freshening up old articles and adding new, relevant information to them to changing the look (again). I will try to post something new at least monthly, but again I make no promises. I want to keep the Zebra Pit alive and hopefully make it thrive again, but it will remain on the back burner as I focus on reviving my writing career and finding freelance work to try to supplement my SSDI.
It took me months to make this decision. I left my job in January and there’s been a lot of waffling on my part about the Zebra Pit’s fate. In the interim, I’ve been kicked off of Pinterest and since the majority of my traffic flows from there, I thought that meant the Zebra Pit was done for. Add to it my total lack of desire to devote several hours every week to posting on social media, I thought why even bother?
But traffic has continued to flow in despite it all and we’re averaging more than 6k views per month, all without producing anything new or sharing regularly on our social media. Though it’s a drop for sure, to hold that kind of consistency seems the mark of something good and useful, a way to measure beyond the occasional plea to come back.
And so, the Zebra Pit lives
Trying hard to work within a schedule and set (low) expectations for myself (not an easy thing for this type A nut), I’ll be sharing my one post a month on the second Monday of every month at noon eastern.
I’ll do my best to focus on the most useful information, such as news, research and of course the things that help relieve the many symptoms of EDS, Fibromyalgia, dysautonomia, MCAS, and more.
For now, I will likely be the only one to post. I loved having Pamela and David to work with, but it added a lot more to my plate than I ever realized. You may see the the occasional guest post, but they’ll likely be rare.
As always, I welcome questions, feedback and suggestions for future posts. I love to hear from other zebras about what they’ve found helpful, as well as things you’d like to learn more about!