In 2002 I was diagnosed with relapse Remitting Multiple Sclerosis.
It was….life changing.
And on October 16th 2017 that diagnosis was changed to secondary progressive MS.
I was shocked and wondered if that meant I had to change my medicine, or add new ones to the already long list I have. Perhaps I would need more physiotherapy? Or perhaps some blood test. I don’t know, what now I wondered?
So after shedding a few tears I asked “what happens now?”.
The neurologist answered “well as you know with MS, we can’t predict what will happen. There’s no way to know how long it will take before you’re bedridden”
What?
Not the answer I was expecting.
Then I noticed that you can see a glimpse of Mont-Royal from the window.
The trees were changing colors on the mountain and it was lovely.
I didn’t hear a word after that.
I just focused on the colors, and have continued to do so ever since.
I’m going to ignore whatever was said after I uttered those three little words “what happens now?”
I don’t know, nobody does
I want to be blissfully unaware of what the future may bring.
And it’s ok if you don’t know what to say, don’t know what to do. If you feel helpless.
I’m in the same boat. But if it helps, here are some things you can do:
Go for a run
I wish I could run sometimes. Quick enough for my hair to flow and to hear myself breathing. A deep heavy breath because I’m taking in so much air, instead of feeling like I’m not taking in enough. Just, do a really good cardio work out. Outdoors! Film it, let me hear your breath and see nature. I want to see what you see. Be my eyes and my lungs ….. and my legs…..
Scream
Scream REALLY REALLY REALLY loud. I feel like I need a good scream but I just don’t have the lungs for it anymore. I’m also way too shy and introverted.
So I need somebody with a good set of lungs and the guts to stand on the top of something and yell as loud and as long as they can. Channel the anger you imagine I’m feeling and scream. Just let it out, let it bring you to tears… or until a baby pops out of you. (The last time I had a “good” scream was while in labour with Julien). Let it be cathartic.
Don’t try to cheer me up.
I’ll get there. I need to be allowed to mourn. I need to let the anger fuel me to fight. Like a wise man told me, acceptance is not an option.
Go for a hike.
Hike somewhere out of the way. Hike far enough that you HAVE to stop and sit and take in the fresh air. That’s what I wish I could be doing. That’s why I’ve been depressed. Not because I want to die, but because I want to live.
So have a moment you’ll remember on my behalf.
Other then that I want to focus on today.
Today, I want to open up an art gallery on prince Arthur street.
Today, I want to take a trip. Perhaps eat a baguette in Paris or see the hills of Tuscany.
Today, I want to live
Today, I see trees changing colors and it’s inspiring
Today, I look outside and see the world ahead
Today, I’m in a yellow kind of mood
Caro 