Let’s talk about grief

A lot of people associate grief with the death of a loved one. But I’m here to tell you that grief can also look like this: Seeing part of yourself slowly disappear at an unreasonably fast rate without explanation or means to fix it.

In my case, during my late teens, I started losing the ability to do what I loved doing, like running, ice skating, floor ball and even martial arts. Everything became painful (even causing injuries), exhausting and riddled with guilt over what I was doing wrong.

As a man in his 30s, dealing with ailments I’ve only really seen in people double my age, it’s been a long journey to accepting the fact that I’ve lost abilities that many people my age don’t even realise or appreciate that they have. In many ways, it forced me to reconcile with my own mortality at a young age.

Thankfully, in 2021, I finally got my Charcot-Marie-Tooth (type SORD deficiency) diagnosis, and I was able to start letting go of the guilt and grief over what I thought I had caused myself. It feels liberating that I can now, without guilt, accept that I’ll never regain the majority of the motor neurons and muscles I’ve lost. I can instead focus on leaving behind what was taken from me, do the best with what I have, and find new ways to live a satisfying life.