My MS confession…
My name is Jocelyn and I have MS.
Ten years ago—yes, a decade—at the ripe old age of 25, I was diagnosed with MS. The dreaded multiple sclerosis, RRMS to be exact. Wait—what?
MS is an auto-immune disease that effects the central nervous system: the brain and spinal cord. Every person with MS deals with different symptoms, struggles, and progression of the disease. Currently, there is no cure.
Canadians have the highest rate of MS in the world. Everyone is susceptible to being diagnosed with the disease, although different factors increase your odds. With new cases being diagnosed each day in Canada, the likelihood of someone you know being added to the growing list is high.
You probably already know someone or several people that have MS. If you don’t, ask your friends if they do. You may discover you already know several people with MS, it is hard not to with 100,000 people in Canada living with it.
If I didn’t tell you I had Multiple Sclerosis you would never know. Like many others living with MS, my struggles are mostly hidden within.
When I was diagnosed, my very first thought was, “What do you mean I have MS? What the hell is that, what does it mean for my future?”
Then, after I ran to my computer and googled it (Google is not your friend on this subject by the way) it showed me every horror story and worst-case scenario out there and my life was forever changed. My hopes and dreams for the future were pointless—my life was over.
My first reaction was to hide it—don’t tell anyone. Ever. If people knew they would think differently of me and I would never be able to get another job again. I didn’t understand it or what it meant other than I would have MS for the rest of my life and there were a lot of potential disabilities that terrified me. I felt lost and alone. I cried all the time and couldn’t hold down a job for months. I fell into a deep depression and wanted to die. I mean, what was the point of my existence anyway. I was a useless burden on society and would never become anything more.
But it wasn’t the end—it was just the beginning. A new story began weaving, full of plot twists, triumphs and failures; although, if you learn something new from it, it’s never really a failure. I’m not going to let MS stand in my way. I live my life the way I want to, even if I have to revaluate what I want and how to make it possible. I still set goals and have dreams for the future.
As the years went by I learned to adjust to the different symptoms that invaded my life: numbness, mild vision disturbances, depression, vertigo, chronic fatigue, chronic pain, by telling myself to be grateful; it could be worse and that tomorrow is a new day (I now say this to my son all the time). It wasn’t always easy and I’ve tried more medications than I can keep track of. I often joke that I have a pharmacy in my purse.
Fatigue has been the hardest symptom for me to deal with. It affects everything from my performance at work and my ability to earn an income, to spending time with my son, to going out with my friends and having a social life. And no one knows it’s there, because it’s one of the invisible symptoms.
This was one of my major struggles in my career while in the financial services industry. I made huge mistakes at work because my fatigue kept me from thinking clearly. My ‘brain fog’ made it difficult to be productive and helpful when meeting with clients. How can I possibly explain and clarify anything when I can’t recall the important information to give out or find the right words, I end up stumbling around in the conversation and get frustrated with myself. I’m sure lots of people either thought I was clueless or high on something—whether or not they did, I’ll never know.
I had good days and bad days, good hours and bad hours but during the bad times, which can creep up on you slowly or hit you like a truck flying out of nowhere, I found it hard to focus and keep on task.
We’ve all been there, you know those days when too much is happening all at once; the radio is on, the phone is ringing, the kids are fighting, you’re trying to get this one last thing done for work as the pot on the stove starts to boil over. Just one more thing and you’re about to freak out. When my brain is fatigued even the smallest distraction like the radio playing could mess up my concentration.
I did have some success with keeping track of the times when my fatigue was at its worst and the situations that seemed to trigger it so I could schedule my life accordingly—which involved a lot of naps.
Never the less, my boss took notice and approached me knowing something was wrong, and I was forced to confess I had a medical problem. Awkward and embarrassing for me as I thought I was doing an amazing job at pretending to be fine.
My fears of judgement on my capabilities and/or believing that I actually have a medical condition were completely unfounded. In fact, another employee with MS worked in my office for years so my employer had a knowledge base already and were very supportive of me and willing to help in any way they could. It felt good to have that support and understanding even though I ultimately ended up leaving my employment when faced with another MS related medical leave.
I got so tired of the roller-coaster in my back-to-work/off-on-disability status—not to mention my finances—that I decided to leave in order to pursue my writing hobby. I took one of my fantasy stories that I have been working on for years and started submitting it to publishing houses, after I paid to have it professionally edited. I’m hoping to turn my love of telling stories in to a career that I can manage while living with MS.
Even though it has been ten years I still have a really hard time trying to explain what MS is to people so I’m thankful when they already have an idea about it—but this can also be negative sometimes as many people have pre-conceived notions about MS and what they expect to happen to you. They start telling me about all the things I should and shouldn’t do because their aunt, neighbor, friend of a friend, or whoever has MS. I try to keep in mind that this is done with the best intentions and a lot of people don’t know what to say or how to approach the subject, they just want to be helpful. Then I try to tell them how it is different for me.
I now know that I wanted to hide it and avoid talking about it or telling people I even had MS until I absolutely had to because I saw it as a weakness and an undesirable flaw (not a cool, quirky, cute flaw). I was embarrassed and ashamed—truth be told, I still am a little—but I’m working on changing my views and embracing MS as part of me by being more open about it.
Writing this article is a huge step for me because I’m putting it out there as public knowledge by announcing it to the world and it will no longer be isolated to my social circles.
The MS Walk is something I have been part of for years and even did the radio ad for the MS Society Jayman BUILT MS Walk in Edmonton in 2014. I’ve seen lots of MS supporters with fantastic fundraising accomplishments, so I wanted to find a better fundraising idea than just asking my all of my friends for twenty bucks or trying to campaign on Facebook. Then I came up with an idea…
I’m currently running an MS fundraising campaign for the 2017 Jayman BUILT MS Walk in Edmonton with the release of dark fantasy novel, Melhara*, by Jocelyn Tollefson (my author/pen name), by donating $1 from every book sold (approx. 25% for eBooks) until May 27th to the MS Society of Canada. Donations will be calculated from the sale of every edition (eBook and paper). After the MS Walk 2017, donations will be banked for the MS Walk 2018.
*Melhara is a dark fantasy novel not suitable for readers under age 16. The novel is not related to Multiple Sclerosis—the author is.
If you like fantasy novels or know someone who does, you can support the MS Society by ordering your eBook copy of Melhara, available now through Smashwords, Kindle, Kobo, and other eReaders.
Paper copies are available through Amazon.com/.ca/.co.uk, select bookstores in Edmonton, Alberta, including, Audrey’s Books, 10702 Jasper Ave, Coles in Southgate Centre, 5015 111 St, and Books For You in Camrose, AB, in the Duggan Mall 6601 48 Ave.
Visit my author website: www.JocelynTollefson.com, or like my pages on Facebook: melharabooks, and JocelynAuthor to learn more. You can also follow me on Twitter @melhara2017 or Goodreads: Jocelyn Tollefson.
Thank you for your support to an important cause along with supporting an author with a dream.
Live, love, laugh, and learn. :)