Multiple Sclerosis changes you in ways that feel slow from the inside but shocking to the people who haven’t seen you in a long time. I keep thinking about how the last version of me most people remember isn’t the version that exists now. It’s kinda weird. They carry this snapshot of who I used to be and I’ve had to keep moving forward with a body that keeps setting me back.
It makes reaching out harder than it should be, not because I don’t care or don’t want connection, but because I am still figuring out how to bridge the gap between who I was and who I am now. I have learned that just saying “good” when asked how im doing leaves out a lot and I don’t want to be a bummer. Life is good but it’s also hard and messy thanks to MS.
There’s also this grief around old common ground. Things we used to bond over. Things we used to do without thinking. They live as good memories but they also sting a little because I can’t meet people in those places anymore.
And then there are holidays and birthdays and all the social stuff. I want to be there. I want to show up. I just don’t always have the body or the energy to do it. I worry that from the outside it looks like I don’t care. Like I’m choosing to stay away. But the truth is I miss being able to just exist in a room without having to plan for it like a whole expedition and then be wiped out for days following.
I guess all I’m trying to say is MS doesn’t just change what you can do. It changes your relationship to people, to memories, to the past versions of yourself. It makes everything feel a little further away. And I want people to understand that my absence isn’t disinterest. It’s just the reality of living with multiple sclerosis.
Image by Meghann Prouse Indie Photographer
wheels & red 