Is it really a compliment?

I ran into someone I hadn’t seen in months and as part of the usual catching-up chit chat they asked if I had lost weight. When I replied that I didn’t know they said it looked like I had.

It was clear they meant it as a compliment.

All the way home I was hoping they were wrong

Because I don’t have a scale, I pulled out some jeans from high school and tried them on. They shouldn’t fit me now, and thankfully they didn’t. I breathed a sigh of relief, put the jeans away and went on with my day.

What my acquaintance didn’t know was that I had had bloodwork done earlier that week and was a bit anxious about it. The immunosuppressant drugs I’m on can have nasty side effects so my doctor screens regularly to make sure everything’s working alright.

One thing we screen for is lymphoma and some of my blood cell counts were not the numbers I had expected to see. I’d googled it and determined that as long as I wasn’t seeing any symptoms (which I wasn’t) I was fine.

Unexplained weight loss was one of those symptoms.

That’s why the comment on my weight had made me nervous.

Thinness is so often equated with health and, as I’ve written about before, that is so untrue.

Instead of making me feel good and confident, their comment had just stressed me out for the rest of the day. They had achieved the opposite of what they intended and had no idea. Next time I hope I have a better answer.

Actually next time, I’d rather skip the conversation altogether. Coming out of this pandemic many of us are not the same size we were going in. Rather than commenting on someone’s body shape or size can we all agree to just say “it’s so nice to see you!”?

This is a recent photo of me standing in a field, wearing my favourite outfit: a lightweight sweater I made and a refashioned dress I’ve had since high school that always fits me because it’s basically a giant sack.

Riding a bike with MG

I grew up in the country, riding bikes everywhere because everywhere was too far to walk to. I would ride to the creek and catch bugs or pull algae off the top of the standing water in the ditches. I would ride with my siblings down the big hill and feel the wind rush against our faces. We would meet up with friends and all ride together. I remember riding to a nearby cemetery with a friend for a picnic.

In the summer my parents would load all 6 of our bikes onto the trailer and bring them to camp. We would ride bikes to church every morning. (My dad installed a book carrier on the back for my Bible.) We rode around camp looking to see which trailer our friends’ bikes were piled outside so we’d know where the party was at. When we got a bit older we were allowed to ride off the camp property and into town to get McDonalds.

When I moved to the city I was nervous to ride alongside cars but I practised. My husband and I rode to church. We brought the bikes into our little apartment to store on the balcony. Somewhere along the way my bike broke and my husband’s was stolen and we didn’t bother replacing either but always planned to.

Then I got sick and I figured I would never ride again. If I’m too weak to walk without assistance, surely I couldn’t ride a bike.

But I’ve been feeling stronger the past year (thanks to the pandemic for letting me cut most of the physically difficult things out of my life) and decided I wanted to give it a try.

I’ve always wanted a retro-looking bike and when I read reviews, multiple grandmas raved about how comfortable they are. I knew that was what I needed.

Thankfully we were able to get three bikes, one for each member of our family, amidst the bike shortages and before the most recent lockdowns.

I was nervous that this would be a failed experiment but it turns out that my myasthenia gravis gets along quite well with bike riding.

The thing that’s hardest for me when walking long distances is holding my back upright. My postural muscles give out long before my legs do, which is why I hold on to a walker. Bike handlebars keep me upright the same way my walker does.

The most difficult type of motion for me is one that is repetitive. Walking in a shopping mall where every step is the same is much harder than walking outside where the texture of the ground is constantly changing. Biking has a lot of variation built in, (like hills and turns) and I can adjust my feet on the pedals to target different muscle groups.

It may be a small thing but because I thought I would never be able to ride a bike again, this feels miraculous to me.

We’ve been exploring the bike trails and neighborhoods near our house. This bike has a carrier on the back as well but now I carry a picnic instead of my Bible.

Myasthenia Metaphors – flamingo knees

If you ever see me wearing black knees braces and walking with a waddle it’s probably because I have flamingo knees.

Most of the time my knees are fine, but every once in a while all the muscles turn to jelly and my knee caps feel like they’re unsupported. They slowly drift further and further back as my knees begin to hyperextend.

The first time it happened was two months after I noticed my disease was generalizing – not only affecting my eyes. I didn’t use any mobility aids yet. My husband and I had taken a day off work to go Christmas shopping at the big mall downtown. We had split up for an hour and as I walked the pain became sharper and sharper, just in one knee.

I entered the drug store on the main level and went straight to the “old people aisle.” The one that housed braces, canes, extendable shower brushes, and all the things they advertise using grey-haired models.

I sat on the floor and tried on several braces until I found one that worked. I stood up and immediately felt better. I paid for the empty box and wore the brace right out of the store as I went to meet my husband.

For me, flamingo knees are triggered by walking on flat, uniform surfaces for an extended period of time. I can walk outside for an hour with just my cane and be fine. The unevenness of the ground provides enough variation in my gait that no one muscle is exhausted.

But places like the mall, IKEA, Home Depot, and Costco are a problem. Every step feels the same, uses the same stepping pattern, and stresses the exact same muscles. They start to wear out pretty quickly.

So now I know that even on a good day I will need my walker. (On a bad day I might use a motorized cart.) Which is fine with me because it’s got a basket and a seat which means I’m way more comfortable that everyone else standing in the checkout line line with their arms full.

Walking in the snow is not as tiring as you might think because every step feels different. Variety is good for me.

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?

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?

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.

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.

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.

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.

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.

and sometimes I’m perfectly fine and strong and happy. Every day is a surprise.