This blog is intended to talk about my life as a writer, yes, but my writing fits into a whole life as a person that is way more complex than just my writing. And that all, in turn, informs my writing. One area that informs all of my life, of course, is my health. This blog has alluded to my struggle with chronic illness, but this is the first post where I’m really going more in depth and talking a little bit about my chronic conditions, and my recent journey to those labels.
The image above explains why the zebra came to be the mascot of the specific chronic condition I was recently diagnosed with, Ehlers-Danlos Syndrome. I specifically have the most common type, the Hyper Mobility Type. More broadly, a “medical zebra”, which I am also, is someone who frequently baffles medical professionals, bouncing from professional to professional for years often without a correct diagnosis.
Ehlers Danlos Syndrome is a collection of disorders of the connective tissues and collagens in one’s body. An excellent overview can be found here on The Zebra Mom blog. My favorite part is how she would describe this disorder to her seven year old child:
“A carpenter makes a wooden chair. Instead of using wood glue to place the joints of the chair together, he uses chewing gum. Once finished, the chair looks fine. But, as time goes by and the chair is used, the chewing gum doesn’t work very well at keeping the joints together. Without proper glue the chair can begin to get wobbly.”
Definitely go to the link and read more about this condition and the chronic pain it causes: it describes more than I ever could.
I have never been a particularly healthy kid. I started getting migraines in second or third grade. I remember saying I had one once as a child, and being accused by a classmate as faking, because it was something her mom got and “kids don’t get migraines.” I sprained my ankles extremely frequently. I got small injuries–bruises, sprains–in gym class nearly every week. I was usually written off as unathletic, not in pain.
In eighth grade, I started showing more concerning symptoms. It’s when I started blacking out when I stood and getting fainting spells. After a severe fainting incident, they performed an MRI, and I was diagnosed with Chiari Malformation.
Chiari Malformation, according to the Mayo Clinic, is a condition where one’s brain tissue extends too far into their spinal canal.
Since EDS gets its own animal mascot, the Zebra, fantastic Chiari advocate Amanda Johnson found one for Chiari: the Giraffe! She chose giraffes both for their long necks, and because in Ancient Egyptian art they were depicted as great power in strength, “just like a Chiarian is every day.”
The crazy thing is, I didn’t remember my Chiari diagnosis. I’m not sure why. I was only twelve, and perhaps it was so traumatic I blocked it out of my mind. But fast forward to early December 2016. I’d had a severe migraine for a week and a half and was beginning to feel really helpless about it. I was talking about the migraines to my mom, and we had approximately this exchange:
Mom: You haven’t really had problems with migraines for this long before have you?
Me: Yes I did, in 8th grade. It’s why I had to quit band.
Mom: Oh yeah, but that was because of the Chiari.
The Chiari!? I had heard the term recently in chronic illness support groups but I didn’t remember having it! Turns out that, yep, as a preteen I had totally blocked the diagnosis out, but I had seen several specialists and even a neurosurgeon, but that my parents decided against surgery because the herniation did not seem to be severely affecting cerebral fluid flow, and my brain was still young and developing and they hoped symptoms could be managed through medication and quitting strenuous activities like carrying a fifty pound tuba in band (*note: I actually do not remember how much a tuba weighs. I did not play for long).
Having the Chiari piece back in place made all the difference, turns out. Chiari is often a comorbidity of Ehlers Danlos Syndrome. I was evaluated for and diagnosed with HEDS, replacing my fibromyalgia diagnosis.
A Zebraffe, coined by Amanda Johnson, fellow Chiarian and administrator of Chiari Sisters facebook group
Since receiving both seemingly-correct diagnosises, I am feeling a lot more hopeful. I mean it’s weird: not much has changed. Both Chiari and EDS are lifelong conditions for which there are no cure. But finally, my symptoms, problems, and medical history seem to fit together like a puzzle, and I’m working towards a team that can best help me manage my conditions. I’m also reading a lot about both and joining support groups, which have made all the difference in helping me have hope going forwards.
I also, of course, credit my faith and amazing human support system God has given me. My conditions may be daunting, but my God is so much bigger.
So there you have it: my two chronic illness conditions in a tiny nutshell. As this year of wellness continues, I will keep talking about them and their management, and how they coexist with my writing and other areas of my world for a complicated, but very full, life, for which, despite its struggles, I am endlessly thankful for.