I recently had the honour of speaking at the endMS Gala in Toronto. Here is my speech.
I work as an elementary school teacher. For a few years my school participated in the MS Read-A-Thon fundraiser. The Read-A-Thon campaign starts with a kick-off assembly. Volunteers from the MS Society come and explain the disease in a simple way to the students. During one assembly, I remember thinking, “That is a terrible disease.” That there is nothing wrong with your foot, but you can’t move it because your nerves can’t properly relay the message from your brain to your foot; that is terrible. Each year during the event itself, I dutifully encouraged my students to read, felt sad for people with MS and, as we all do with things that don’t affect us directly or indirectly, I put it out of my mind and went on with my life. Fast forward two or three years and I was in the neurologist’s office. After months of strange sensations, discomfort and pain, I was starting to feel better. Things were beginning to work again; my hand, my leg. I had done all his tests and thought our appointment was over, but it was really just beginning. The doctor sat down to have a talk with me about my MRI results and as he talked, he used some of the vocabulary that I remembered from those Read-a-thon assemblies. I knew before he said it what he was talking about. And just like that, the disease I had thought was so terrible just a few short years before was now my disease.
I’m only at the beginning of my MS journey. To say it has been a roller coaster ride, full of ups and downs, is cliché, but so true. The kind of MS I have is called relapsing-remitting, so to put it simply, things can come and go in an unpredictable way. I have struggled physically in ways that you would notice; my hand not working or my foot dragging, and in ways that you wouldn’t notice; my skin so sensitive and painful to the touch that I couldn’t stand the feel of my clothes against it.
I have struggled with thoughts of the future. What will my body be able to do in five years? In ten years? Next week? Will my MS move into the progressive phase where the deficits and disabilities accumulate?
I have worried about being a burden to my immediate family, as of course MS affects not only me, but also touches the ones I love. The medication I currently take is administered through a daily injection. Part of the process involves heating the injection site before the needle and cooling it down afterwards. That my seven year-old daughter would wonder if a hotel has a microwave in the room (so I can heat up the pad to warm the injection site) rather than a pool, makes me sad that she already carries a load heavier than those of her friends.Tags: MS Gala, speech