Bookpleasures.com welcomes as our guest Yvonne deSoussa. Yvonne is the author of MS Madness! A "Giggle More, Cry Less" Story of Multiple Sclerosis.
Two years before Yvonne’s diagnosis of multiple sclerosis, a relative volunteered her to write an article for a local newspaper. Little did she know at the time that it would be the beginning of a writing career.When MS threatened to turn her into a lunatic, she started writing more frequently and quickly discovered that writing about the insanity that is MS was helping to keep her sane.
Yvonne's work has appeared on CapeWomenOnline, and in Chicken Soup for the Soul: Finding My Faith and Something On Our Minds, Volumes 1 and 2.
Yvonne enjoys writing, laughing, and resting. She lives by her personal mottos, “how you deal affects how you feel” and “my MS is not your MS and your MS is weird!”
Norm: Good day Yvonne and thanks for participating in our interview.
When were you given your official Multiple Sclerosis diagnosis and did your diagnosis take a long time? As a follow up, what tests did they do to get to the diagnosis?
Yvonne: Thank you so
much for interviewing me Norm. Bookpleasures.com rocks!
diagnosis was issued on 12/17/09- Merry Christmas to me! It was
not the Christmas present I was hoping for but I was luckier than
most in that I received my diagnosis within one month, which is often
unusual for MS patients. Sometimes it can take up to a year to
get the right diagnosis as MS looks like so many other illnesses.
I'd been having minor symptoms that would come and go for about
a year but my friends and I thought they were just symptoms of aging-
extreme fatigue, various aches and pains, some cognitive
difficulties. Eventually my feet got this numb, tingly feeling
that coincidentally happened after I had exercised more than usual.
Since I am terrible at exercising I thought it was how they were supposed to feel when I finally got moving! When that feeling creeped up my legs and to my abdomen within one week I went to my doctor. The first test they did was called an EMG-electromyogram where a doctor basically electrocutes your muscles to find out if they are working as they should be. It's not pleasant but not as bad as it sounds either. My muscles did what they were supposed to and so I was sent in for a series of MRI's. All of this while I was preparing for the holidays. The MRI's were so clear it was like the letters MS were written across my brain and thus I received my diagnosis. Several additional MRI's have confirmed it.
Norm: What was your reaction to hearing that you have this disease?
Yvonne: Honestly, my
first reaction was, "this can't happen now- Christmas is next
week!" There was a concern that I might have to spend the
holiday in the hospital. When that wasn't necessary I was so
relieved I almost took the diagnosis in stride. I know that
sounds unbelievable but what I did was somehow find a way to put the
thoughts off until after the holiday when I had to get serious about
setting up training in using my new medication and other medical
My sister had been living with MS for 8 years and so I had a bit of knowledge. Plus, the cognitive difficulties were the most disturbing and I was relieved the diagnosis wasn't early onset Alzheimer's disease. Still, once Christmas had passed and I began to really process the news, MS was still a heavy hit. Having a sense of humor helped a lot.
Norm: Do you have a personal philosophy that has helped you to cope with having MS?
Yvonne: I rely on two. "How you deal directly affects how you heal" and "My MS is not your MS and your MS is weird." "My MS is not your MS" is a pretty common saying among the MS community but I had to jazz it up with a bit of honest humor. And it's true, MS looks completely different in each person who is living with it. The "weird" part may not be true but I like it anyway.
Norm: Does laughter have a place in dealing with MS and if so what role can it play?
Yvonne: Absolutely! I think I would have completely lost my sanity without it! People told me that I should be angry about my diagnosis but I wasn't. What I was, was frustrated. There are so many frustrating things about living with chronic illness that they had the ability to overwhelm and destroy me. Making fun of the frustrations helped me deal with them and helped me to smile. I'm not a scientist but it seemed like a smile, giggle or laugh here and there were excellent ways to release some of those negative emotions. I'm not saying I was constantly happy or laughed the illness away. Definitely not. I cried a lot too. And please don't get me wrong, multiple sclerosis is a horrible, frightening illness. But when I could find a way to laugh at it, without minimizing it's severity, it was a better way to deal.
Norm: What advice would you give to someone who has just been diagnosed with MS or for that matter any other neurological condition such as Parkinsons?
Yvonne: One thing I think is crucial is to make sure you have a doctor you're comfortable with. My first neurologist was awesome in the beginning, when I needed her most. After a while though I started to feel like my illness wasn't progressive enough for her so my concerns weren't worth her time. That was not healthy for either of us. I have since found a neurologist who is open and who I can be totally honest with. And I think communication with the medical professional who is responsible for your care is key. I would also suggest that newly diagnosed folks try not to get impatient when people ask questions. There's a lot of judgement that people express about those living with chronic illness and that is unfortunate. But if someone asks a question, even a silly one, they may be really trying to understand. Finally, I would suggest rest, rest, rest. And if you're still tired, rest some more.
Norm: Do you see sometime in the near future a cure for MS?
Yvonne: I think it is very possible. Treatments have come a long way, even since I was diagnosed almost six years ago. There are talented researchers working on this now and so a cure would not surprise me. One can hope!
Norm: What motivated you to write MS Madness! A "Giggle More, Cry Less" Story of Multiple Sclerosis? As a follow up, what purpose do you believe your book serves and what matters to you about the book?
Yvonne: What changed my life on this journey was a comment my little brother made right after I as diagnosed. Chris had driven me to the hospital and was a 21 year old, semi-pro dirt bike rider. He drove a huge pick up with two dirt bikes always in the bed. We were walking out of the hospital and he said, "you know, you can totally get one of those handicapped parking placards now." I think it was his way of trying to cheer me up but I wasn't having it. I told him not to bug me with such foolishness. He then said, "even if you don't want to use it right away, you can let me borrow it." I suddenly pictured him backing into a handicapped parking spot in that enormous truck with the dirt bikes and I cracked up. And I realized, I felt better. I wrote MS Madness! to share that feeling with others. And because, it turns out, in a weird way, funny things kept happening as I proceeded on this journey of life with a chronic illness.
Norm: Can you share a little of your book with us?
Madness! describes the year following my diagnosis but in an
unusual way. I don't delve into deep medical facts unless I can
make fun of them. While it does not make light of the horrible
difficulties of life with multiple sclerosis, it focuses more on the
series of crazy adventures that MS took me on. Some of those
adventures include "accidentally" kicking an annoying male
doctor in the crotch during a routine mammogram, becoming a secret
agent to pay for drugs made from Chinese hamster ovary cells,
shouting the "F" bomb in my church parking lot just
as Sunday school was starting and many others.
I like to think of it as "Bridget Jones gets diagnosed with a chronic illness" except my stories are real and I don't wind up with Colin Firth in the end. Not yet anyway!!! But it is less a medical book than a humor one, and as people have told me, an inspirational story. I'd also like to say that it is not just for people living with a chronic illness. I think they humor in it appeals to folks no matter their particular struggles.
Norm: What has been the best part about being published and do you hear from your readers, if so, what do they say?
Yvonne: Hearing from
readers is definitely the best part. Many times the comments I
have received have brought me to tears in a good way. One
woman contacted me to tell me that in addition to recently being
diagnosed with MS she had lost her father and was in a major
depression and downward spiral.
A friend bought her my book and she soon found herself laughing at my adventures and it helped her to find her way out of her depression. Another woman wrote to tell me that my book brought her and her recently diagnosed daughter-in-law closer together. And so many people have told me that even though they are living with different chronic illnesses it was like I was writing their story for them. Hearing these comments has been amazing and I'm so grateful for them.
Norm: What's the most difficult thing for you about writing your book?
Yvonne: I had a very hard time with the editing process. It's a crucial part of publishing and definitely worth it but there were so many edits and changes that I got sick of the thing! I was at the point where the funny parts were so stale to me that I thought no one was going to laugh at them ever! But I had a wonderful editor who helped me power through and eventually the process was over and holding your just published book in your hand is an incredible feeling.
Norm: Did you learn anything from writing your book and what was it?
Yvonne: Well, I learned way more about the publishing process than I ever expected! But seriously, I learned that making people smile and inspiring them is much more important than simple book sales. I didn't expect MS Madness! to become a worldwide bestseller but I did hope it would take off commercially. It hasn't quite yet but the reviews have been fabulous. More than that, the comments from readers have been worth every bit of blood, sweat, tears and giggles I have put into it.
Norm: Where can our readers find out more about you and MS Madness! A "Giggle More, Cry Less" Story of Multiple Sclerosis?
Yvonne: Readers can
find MS Madness! wherever they would normally find books
and ebooks. If a local bookstore does not carry it, please ask
them to order it for you. Amazon has it listed along with most of my
current reviews. If readers want to learn more about me and
want to keep laughing at life with a chronic illness they should
check out my WEBSITE where I post a blog, a bio and general laugh lines by people
famous and not so famous.
Norm: What is next for Yvonne deSoussa?
Yvonne: I've discovered that I really enjoy making people laugh, even if it's at my own expense. To that end, I would like to do more inspirational talks and I would like to keep writing. I have been published in several anthologies, including Chicken Soup for the Soul: Finding My Faith. My goal is to do keep up with those two things all while taking care of myself. I've come to realize that the rest component is huge on this journey as is healthy eating and exercising- not my strongest activities. So everything has to be done with balance and I hope to just keep on balancing and making other people smile.
Norm: As this interview draws to a close what one question would you have liked me to ask you? Please share your answer.
Yvonne: Hmmmm, I think you asked great questions Norm so I'm not sure. Ok, how about this one- Who is that on the cover of your book? The answer is, that is supposed to be me and Myron, my own obnoxious, goofy looking, MS monster. I held a contest with my blog readers to name him and a reader came up with Myron, the myelin munching monster. I wanted him to look more obnoxious than scary as MS is terrifying but if we who live with it can learn to be less intimidated by it, then we take away a lot of it's super scary power.
Norms: Thanks once again and God Bless You. You certainly are an inspiration to those who have MS and other neurological diseases.
Thank you Norm- not only for this interview but for bringing readers and authors together!