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From Books to Shots
How a chronic illness lead me to my passion
by Yvonne deSousa
I grew up a bookworm, an inherited condition from my bookworm mom. She was such a bookworm that when she had renovations done to our home the carpenters built bookcases into the walls. When it came to re-doing the room I shared with my older sister, my mom had two bookcases designed, one for each of us. It wasn't long before I filled them up.
My Christmas wish list in 1983 included Reebok sneakers, Love's Babysoft, the J. Geils Band Freeze Frame album and about 15 paperbacks, most of them by Lois Duncan, the 1980's master of teen suspense.
I fantasized about how cool it would be to Lois Duncan, making tons of money for simply creating fascinating stories for others to enjoy. I figured when Lois got bored she could entertain herself with one of her own great books.
Ahhhh, the naiveté of youth.
I never outgrew my bookworm ways. To this day, I always have a book by my side. I cannot, will not, take a drive of more than 30 minutes alone without an audio book on cd, two actually, in case one of the cd's is damaged. Far be it from me to get stuck on a remote highway without a good book to listen to.
Life happened, and I became too busy to think about writing my own stories. But still I read. And read. And read. Days off from work and holidays began with a cup of tea and a book - greatly cherished time. But as I aged into my thirties something new took hold. Exhaustion. Not just any old regular exhaustion, but extreme exhaustion. This level of tired consumed my whole being and even constant rest did not help.
While still a prolific reader, enjoying the books I loved became trickier. My brain was so tired that it took me longer to understand what I was reading, requiring me to read each paragraph over and over.
My eyes were so tired that they would lose focus and sometimes blur the words on the beloved page. The fatigue would overtake me, no matter what time of day it was, and I would be asleep after only a few pages. Frustration entered my reading world.
Other random symptoms in my body popped up, but since many of them seemed to be consistent with aging, I ignored them. You would think appearing to medically age 20 years in just two years time would be enough of a concern to cause a person to seek assistance from a doctor, but I was just too tired to care.
Eventually, one symptom was so odd that I had no choice but to get it investigated. It started benign enough, a tingling feeling in my feet, as if I was walking on the beach, a comforting feeling for this native Cape Codder. But it was November, and I hadn't been walking on the beach.
I had walked a bit more than normal the day before, so I assumed the sensation was what happened when someone actually exercises. But within the week, the sensation moved up my body to my legs, then my butt and then my stomach. Several doctor appointments later I was diagnosed with Relapsing Remitting Multiple Sclerosis.
As frightening as this news was, it was an explanation for the medical weirdness going on with me. I wasn't going crazy, I had MS!
At the time, the only course of treatment was various injections the patient would give themselves. The diagnosis and the treatment brought such bizarre changes into my life that I began to feel like I was going crazy. But I'm not crazy, I thought, as I cringed while shooting a drug made from Chinese hamster ovary cells into my body. It's not insanity, it's MS.
But it sure felt like insanity to me.
Week after week the illness brought more crazy into my life: having a mental, tear filled breakdown for charity in a department store at Christmas time, experimentation with a prescription stimulant also known as "legal speed", becoming a secret agent in order to finance my expensive new drugs, being bombarded with conflicting advice such as "try massage", "don't try massage", "get a pet", "don't get a pet" etc.
I quickly learned that even though I wasn't crazy, I would go crazy if I didn't learn to make fun of the crazy. To keep things in perspective, I started writing down the crazy.
Several months later, the cognitive difficulties grew so extreme that I had to leave my job. Being unemployed brought a new level of crazy into my world, and so I kept writing. It also brought a break from the fatigue. Not completely, as I was still tired all the FRUSTRATING time. Since I was not using all of my energy at a 9-5 job, I had more time and energy to use to enjoy my reading passion.
As the crazy kept on coming, I kept on writing.
Soon, my days were filled with reading and writing mixed with shots, rest, aches, pains and brain fog. Reading and writing were the fun parts of my day. I insisted on using my sense of humor to fight back against MS. It didn't totally work, but at least it made me feel a little better.
Before I knew it, I had written a book. Now, one of the treasured books on my bookcase is my own, written by me.
Multiple sclerosis had slowly started to rob me of my passion for reading. But then it changed other things in my life and brought me back around to expand my love of reading into my teen fantasy of being a writer myself.
I'm not grateful for MS, but having a book published that uses a giggle stick to beat up on chronic illness sure eases a lot of the bad. Whether I am doing one of the lousy shots, giggling one of my crazy "this has to be because of MS" giggles, or just reading a book, my passion for great stories is back!
To learn more about my journey and grab some of your own giggles, check out my new book, MS Madness! A "Giggle More, Cry Less" Story of Multiple Sclerosis. You can read my blog at yvonnedesousa.com
Yvonne deSousa didn't start writing until the age of 40, when a diagnosis of relapsing remitting multiple sclerosis began to threaten her sanity.
She quickly discovered that using her sense of humor helped her to feel like she was fighting back so she started a weekly blog on yvonnedesousa.com.
Since that time she has been published in the anthologies Something on Our Minds, (volumes 1 and 2), Chicken Soup for the Soul: Finding My Faith, and now has her own book out, MS Madness! A "Giggle More, Cry Less" Story of Multiple Sclerosis.