I was going to box professionally. Then I couldn't keep my hands up.

Before I had a name for it

I was a boxer. That was the plan — I was going to go pro. And then one day in the gym I just couldn't keep my hands up. Not tired, not out of shape. My arms would not stay where I put them.

I was 18 when I had a very difficult pregnancy, and that was years before anybody said the words myasthenia gravis to me. For a long stretch of my life I was told it was something else, or that it was nothing, or that I should try to rest more.

I'm a Black woman. I have wondered, more than once, whether that made it harder to be believed back then, and whether I would have got the right answer sooner if I had looked like someone else in that waiting room. I don't have proof. I just know how long it took.

What MG is actually like

One minute we look okay, one minute we don't. That is the part people find hardest to believe. Myasthenia gravis fluctuates — I can be fine at the start of a conversation and not fine by the end of it, and nothing visible has changed in between.

There's a fog that comes with it too. It almost is like dementia. I'll have a full conversation with someone and not remember it later. You learn to write things down, and you learn to forgive yourself.

June 2026

In June 2026 I went into a myasthenic crisis. I was on life support, and I was in hospital for a month. I chose to stay off the heavier pain medication, which meant days awake with a breathing tube in.

I'm still recovering. I'm off work, and I run this organisation from home. I'm telling you that not for sympathy but because somebody reading this page is in a hospital bed right now, or sitting beside one, and I want them to know that this is survivable and that there is a person on the other side of it who is still here and still working.

What I've done with it

I started Single Snowflake, and I ran it out of my own pocket. We held the first myasthenia gravis awareness walk on the East Coast, and in June 2026 we held our fifth. I wrote a stage play called The Mighty Giant, because some things land harder when you watch them happen than when you read them on a pamphlet.

We got June proclaimed Myasthenia Gravis Awareness Month in Halifax. I was honoured with the Love Award through The LOVE Program. We've partnered with the Myasthenia Gravis Foundation of America, and I've been interviewed by them, by broadcast media, and by a pharmaceutical company that wanted a patient's voice in the room.

I put pamphlets in clinics and specialists' offices, so that the next person who walks in with symptoms nobody can explain has something to pick up.