June = Myasthenia Gravis Awareness

June is Myasthenia Gravis awareness month.

Every June for the past 5 years, I’ve thought about writing something but always come up short, because what is worth saying?

A photo from behind as I walk down a path on a sunny summer day, using my cane.
Having Myasthenia Gravis means sometimes I use a cane,

Should I share my diagnosis story? Should I try to detail all the ways Myasthenia Gravis has shifted the direction of my life? Should I list the symptoms so people might be better able to recognize it in themselves or others?

A photo from behind as I walk down a large hallway at the National Art Gallery while using my walker.
sometimes I use a walker,

My diagnosis was swift and too long ago to matter. My life has shifted considerably but that is relevant to no one but me. Symptoms you can google and find an exhaustive list.

I’m giving a presentation while sitting on my walker and wearing dark sunglasses.
sometimes I wear sunglasses indoors, and sometimes I add an eyepatch,

Those things are not worth sharing today. The awareness I hope people gain is that not all disabilities are visible. Not every illness has a cure. Pain sometimes just persists. That’s the way it is.

I’m sitting in a recliner chair in hospital while having an IVIG infusion. My daughter is 3 years old and is sitting with me.
sometimes I get infusions in the hospital,

Recognize that there are people you pass every day in your regular routines who are carrying heavy burdens that go unseen.

A close up photo of infusion tubes hanging out the bottom of my shirt as I’m standing on a sidewalk.
sometimes I do my infusions myself as I run errands,

Don’t judge the person using an accessible parking space who looks “fine.” They may be able to make it into the store but are unsure if they’ll be able to make it back, and know that saving those few extra steps might make the difference.

Don’t begrudge that woman you see take the elevator even though it’s only one floor. Maybe she can walk fine on flat ground but not up stairs.

Don’t assume that man is using the accessible stall in the bathroom because he just wants more space. He may not be able to get up off a toilet without using grab bars even though he looks no different than you.

Don’t accuse that young person of faking it, or carrying a cane just for attention. They may never know when their legs might fail and drop them to the ground.

Don’t give the stink-eye to that teenager sitting in the priority seating area on public transit. He might be barely able to sit upright today, let alone stand.

Don’t assume that lady in the checkout line is a bitch because she seems unfriendly and impatient. She might be in excruciating pain and is just trying to survive the day.

I’m smiling at the camera but my face looks a little crooked.
sometimes my face feels droopy and lopsided,

Realize that not every experience is like yours. And that’s okay.

Be patient.

Give the benefit of the doubt.

Listen when people tell you their stories, even though you may have never experienced what they’re describing.

Bodies, like people, are diverse and we need to make space for each other as we move through the world.

Because we are better together.

I’m holding my 6 year old daughter and we’re both smiling at the camera.
and sometimes I’m perfectly fine and strong and happy. Every day is a surprise.

2 thoughts on “June = Myasthenia Gravis Awareness

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