Meet Wednesday’s Woman: Yvonne deSousa. I met the irrepressible Yvonne at the 2014 New England Author Expo. I invited her here to introduce herself and her book on living with MS.
MultipleSclerosis.net says: “In the US, the number of people with MS is estimated to be about 400,000, with approximately 10,000 new cases diagnosed every year (that’s 200 new cases per week).”
What’s so Funny about Chronic Illness?
One day four years ago I got myself up and headed to work where I was expecting it to be pretty busy. No big deal, of course, we all have busy days at work and I was prepared for it. My legs had been tingly and numb for the last several weeks and so I was shuffling around my office like a drunken sailor. But I could still function. And I happened to like drunken sailors so it was all good. Then I received a somewhat unexpected call from my doctor who told me to leave work and get to a hospital two hours away immediately as my recent test results showed I had multiple sclerosis. The head of neurology at that particular hospital was waiting there to save me. Oh, and I should be prepared to stay in the hospital for several days.
Did I mention that this all took place one week before Christmas?
Shocked, I managed to do what I was told but I was in automatic pilot mode. Actually, automatic co-pilot mode as I was able to reach my little brother who drove me to the hospital. Once there, I met the aforementioned head of neurology who issued this informative declaration- “I’m not going to lie to you, MS sucks.”
Sucks???? That’s the best this well studied doctor could come up with? I could pretty much guess that myself and I didn’t even go to medical school.
Luckily, I didn’t have to stay at the hospital and as my brother walked me out of the building two hours later he desperately tried to cheer me up. In so doing, he said something that would change my life for the better in the aftermath of this terrifying news.
“You know, you could totally get one of those handicapped-parking plates now….”
I couldn’t believe it. Yes, technically a handicapped parking plate could be a small bonus to this sucky news but seriously, I was overwhelmed. I had just been told I had a chronic, debilitating, no known cure disease of the central nervous system. And Christmas was in just a few days. Parking was the last thing on my mind and I told him so. He responded, “Seriously, if you don’t want to use it right away you could let me borrow it.”
It was then that I doubled over, with laughter. You see, this brother of mine was a semi-pro dirt bike rider who drove a huge Ford F150 pickup truck with two dirt bikes in the bed. I pictured this monstrosity of a vehicle backing into a handicapped spot and I couldn’t help myself. The laughing just hit and I couldn’t stop, even losing my breath a bit. Weird thing was, when I stood up and got myself together I realized I felt better. It was as if my little bout of mirth released a spat of feel good emotions that helped beat up on the not so feel good emotions I was battling. It was a realization that would stay with me in the days to follow.
Sure, I would get a little upset when I started to process the diagnosis and the changes it would mean in my life. (I now had to give myself shots – yes shots, three times a week! And the shots were made from, I’m not kidding here, Chinese hamster ovary cells. How does that happen? What was wrong with the Portuguese hamster’s brain cells or the Italian hamster’s liver cells? And why hamsters? Did the scientists even try goldfish or guinea pigs or any other pets?) But more than angry, I would become frustrated. Here are some of the chronic illness frustrations that well, basically, sucked.
One of the most dreadful MS symptoms, a vise like squeezing of the abdomen, is called a hug. Who thought THAT name was a good idea?
Stress is very, very bad for chronic illness. If you have a chronic illness, don’t get stressed. But what is more stressful than being told you have a chronic illness?
Overactive bladder is a symptom of MS. To treat it, you can take medication. The medication however causes the most vicious dry mouth known to man. To treat that, you must drink more water which will negate the benefits of the medication. (I was trying to work through this frustration as I moved my pillow and TV into the bathroom.)
Before I knew it, my life with MS found me in the midst of a series of bizarre and frustrating adventures. It was immediately apparent that if I was going to keep what little sanity I had while dealing with the insanity that is life with a chronic illness, I was going to have to use my sense of humor. And like that, I was surviving an MS diagnosis. No, scratch that. I was thriving through an MS diagnosis! And giggling. And before long, I started writing too.
The result is MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis. It details the journey of my accepting MS and the wacky adventures that followed. Adventures such as: becoming a secret agent to pay for my new drugs, experimenting with legal speed, “accidentally” kicking an annoying male doctor in the crotch, getting married in a grocery store, shouting the F-bomb in my church parking lot just as Mass was starting and many more.
MS happened to be the suckiness that I was dealing with. But don’t we all have a little suckiness in our lives? The goal of MS Madness! is to show everyone that with a strong sense of humor, you can survive almost anything.
Not yet anyway…
In addition to her book, MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis, Yvonne deSousa also writes a weekly blog on her website, www.yvonnedesousa.com, where she continues to use a giggle stick to beat up on chronic illness.