Diagnosed with MS
I will never forget the date, it was August 3rd, a Friday afternoon. I had gone back and forth a million times in my head what I wanted to do. Did I wait for the doctor to call me or did I go into the hospital and ask for my results. Waiting, truthfully might have been easier. It was a long weekend, I knew I wouldn’t get the call until at least Tuesday, if not Wednesday. I knew I could prolong hearing the results for at least 4 days. Instead I forced myself into the car, hands shaking and drove to the hospital. It took 10 minutes for them to hand me the dreaded white envelope and I had barely made it down the one flight of stairs to the parkade before I ripped it open. I had to know. It read:
Demyelinating disease due to Multiple Sclerosis. Neurology consult is recommended.
I’d just found out I was diagnosed with MS. I barely made it to my car before the tears came streaming down my face. I sobbed silently as I put the car in reverse and drove out of the parkade. The tears were not only from finding out that I was diagnosed with MS but they were also tears of relief. For months I knew something was wrong with me. The exhaustion, the sore muscles, the tingling, the temporary loss of eye sight in one eye, the sharp pains. It wasn’t just the obvious symptoms, it was the feeling that I had inside that something was wrong. That feeling that you can’t explain, that no one really takes seriously. “I wasn’t crazy” I thought to myself, something is wrong.
I spent a lot of time crying that day. Definitely cried on the way home from the hospital. Then I cried at home, in bed, faking that I had a headache so I didn’t have to talk to anyone. I cried silently in the shower that night. And then openly in front of my boyfriend. I cried. A lot.
I grieved for myself and for the life that I always thought I would have, that I might not anymore. Then I grieved for my kids, who would have to find out that I am not superwoman, that I might not be able to do everything I want in life. There is the grief for my parents, who I knew would be devastated for me. I grieved for my boyfriend who has gone through MS with someone already in his life. And last, I grieved for my body that must go through this. I grieved. A lot.
Being diagnosed with MS is changing my life, changing the ways I think about things, the way I do things. My bucket list has suddenly gone from a “one day maybe I’d love to do this” to a “holy shit I’ve gotta get this done sooner than later” list. Without meaning to, I’m thinking about things I can still do, even if one day in 20 years I can’t walk. I’m thinking constantly everyday about whether my body hurts because I am using it, or because it’s struggling from the MS and needs a break. Every single moment of every day I am thinking about it.
MS is not a death sentence, instead I have a life sentence, one that has no definitive answers. I don’t know tomorrow, when I wake up, if I will be able to walk. I’m unsure if, in one year, my hands will tremble so much I won’t be able to hold my coffee. I can’t even say for sure if my mind will continue to be strong enough to run my business. I just don’t know.
So what do I know?
I know that my strength has diminished in the past year. That when I am tired, my hands shake. I’ve noticed that when I don’t get enough sleep I feel like I’ve been hit by a bus. I know that I often forget words in the middle of talking. My hands and feet constantly fall asleep and sometimes I panic because I can’t wake them up. I know a hike takes me out for a week and even long after, my legs still hurt. And I know I dream about my MS every single day.
On the bright side I know that right now I can walk, I can still hike, I can still travel, I can still hug my kids and I can still run my business. What I don’t know is how long that will last for. No one knows. There is no answer. There is no cure. And likely there will be no cure in my lifetime.
I still grieve. I am still struggling. I’m still unsure of what life looks like for me in the future but I do know that I am here, and strong and a fighter.
This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
To find out more about MS, visit the MS Society of Canada
Also by Lindsay, Why Women Who Explore is Going Dark for Thirty