How McCune Albright Syndrome Made Me a Writer

Rare Disease Day, February 29, is approaching. In honor of that dubiously marvelous day I felt I'd share how and why I chose to become a writer.

I was born with a bizarre condition called McCune Albright Syndrome, which is a rare form of another rare condition called Fibrous Dysplasia, in itself strange. McCune Albright can do numerous things to one's body, and as others sharing my shoes can attest, also likes to get freaky with one's sanity. For me personally, MAS has mostly effected my bones. It has caused extensive deformity in my leg bones, causing them to break and weaken, eventually requiring the insertion of steel rods to straighten and strengthen them. A delightful bonus to this was that I could now claim, all be it weakly, that I am bionic and have legs of steel.

On top of the deformities of my leg bones, I experienced additional deformity to much of my skull. My left cheek bone, my jaws, the crown of my head and an area of bone behind my eyes were all effected. The cheek and eye areas required a handful of their own operations to address some issues. Furthermore, the bone behind my eyes when I was eight years old, wreaked havoc and crushed my optic nerves, which are special nerves that transmit the visual information detected by your eyes to your brain, where it is then processed into conscious images. This left me totally blind, save for a tiny, and rather irritating ability to detect really bright light in one eye.

All of that played a major part in shaping my personality and imagination. I spent a lot of time lying down or sitting in reclined positions recovering from various surgeries, mainly to my legs. This freed me up for hours upon hours of imagining other people and places. That was further fueled by the Canadian National Institute of the Blind, which set me up with its audio book library, exposing me to countless worlds, personalities and ideas. Access to so many books was an amazing gift and sparked many fantasies about becoming a singer or a writer.

Both singing and writing are forms of telling stories and entertaining others, which I loved. As well, both could be done from a sitting or lying position, which saved my legs from needless stress and activity. I played around with writing on and off for years, but for a long time wanted to become a singer far more than a writer.

My shining dream was to be a death metal vocalist, and to do that I'd need to learn how to sing properly first, then branch out into learning how to scream safely. I took a few lessons from Heather Hutchison, (new window( a talented singer/song writer friend of mine and realized before too many months that maybe singing was not in the cards for me. Disappointed, I shelved that goal, and reserved it mainly for annoying my neighbors who insist upon caterwauling loudly along with boy bands in the great outdoors, where I and other innocent town folk are subjected to such brutal torture.

Eventually I gave up on the singing dream and over the span of a decade or so, played around with writing. This was a painful and intermittent process, as I suffered from major periods of self doubt, both struggling to come up with ideas I felt were solid, and tales that other people would find enjoyable enough to want to read. Finally, in October of 2014, while recovering from my latest surgery I became serious about story telling again. It occurred to me that I have a bizarre sense of humor that others seem to enjoy, and I possessed mountains of random and seemingly useless information. As well, I loved playing with words, entertaining other people and expressing ideas about numerous subjects and issues. I did the math with all of that and decided to make a serious attempt at writing once more.

This time however, I spent a lot of time carefully plotting my attack on the fiction world. I did some research and worked out some techniques to develop story and plot lines with which I was comfortable. I applied those ideas and soon came up with a short story, which of course was, "A Touch of Wolf's Bane," with which I was more than satisfied. I floated it around to online magazines and got a bite on it from the second webzine to which I sent it.

That only encouraged me more so I dove into writing what would become my first, completed novel manuscript, "The Cripple's Game," currently in editing. I paused during the work of that book to pen a couple more short stories, so as to continue seeking publication in online magazines, and after nearly a year, had another story accepted. That is, "The Heinous Measure," due out in April.

All of this had me most excited. At last I had something that accommodated the strengths McCune Albright Syndrome had fostered within me. Even more meaningful to me was the unique perspective and experiences from my health and disabilities. They creep their way into my stories and I like to think that perhaps they give my work a flavor different from the works of other writers.

If you would like to learn more about McCune Albright Syndrome and Fibrous Dysplasia visit: FD/MAS Awareness (new window) or, FD Warriors (new window).

I post every monday as that is my favorite day of the week, so check back next week for another exciting installment of my brilliance.

Follow me on Facebook at: facebook.com/writerjonathanbirdsall

I look forward to seeing you again next Monday.