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Ask Me Anything About My Invisible Illness, but Be Kind


In the midst of moving, I was sorting through office files last week when I came across a parking permit that used to sit on the left side of my windshield.

PRESS.

As a journalist, that press pass gained me closer access to court meetings, accident scenes, community events. It meant I had a job to do, a story to cover, somewhere to be.

It meant I was someone.

I haven’t used that press pass in more than five years now, not since becoming disabled with multiple sclerosis (MS).

Now the only tag that hangs from my car is a disabled placard. One that often garners me glares or shifty stares or flat out shouted comments. “It must be nice to park there,” the last guy said to me.

I flipped him off. I’m not entirely proud of myself.

Perhaps I should have taken the opportunity for some education and advocacy about invisible illnesses and MS. The way I used to do as an able-bodied, working member of society — writing about social justice and politics and crime and the local community.

But I didn’t. I’d had a bad day, I was hurting and exhausted and I didn’t feel I owed that man an explanation for why I needed to park close to the store door that day.

The disabled placard does not give me the same satisfaction as that press pass did.

Seeing the press pass in with all my former office belongings made my throat close and brought tears to my eyes. It stung, the memory. The pass was a symbol of who I used to be, and I was proud of that girl. I liked what I did, and I’d like to think I was good at it.

I miss that girl.

Who I am now isn’t someone I expected to be when I was taking college courses. I didn’t ever want to be parking closer because my body is slowly taking itself apart, bit by bit. No one does.

I suppose what I want now is simply some distance, some respect, and a comment-free zone when someone doesn’t understand someone else.

Ask a question. Be kind. It’s really that simple.

That’s who I was as a journalist all those years ago, and that’s still who I strive to be as an unofficial MS advocate.

Getty image by Leah 613.