MG is serious, for me at least. I haven't had diabetes long enough to feel the seriousness of it all, but I do recognize the predicament I am in. Am I always cheerful? Of course not. Cheerful is the public face. The public face does not always reflect my heart.
Having MG is hard. I got my old bike out of storage. I've been a wheelchair user off and on for the past ten years. MG migrated out of my legs and into my shoulders. Perhaps, oh, is it possible? Can I ride a bike again? I filled up the tires. I brushed off the cobwebs. I adjusted the old chain. A little oil, and a lot of bravery later, I got on my old bike and rode it down the street. The saying, "It's just like riding a bike," is true. I hadn't ridden in a decade. And there I was riding my bike. It was wonderful! A miracle. That lasted 10 minutes. After 10 minutes I had to stop. Not because of being sore. Or not wanting to continue. I had to stop because my brain stopped telling my legs to move. The MG alarm sounded. Stop what you are doing. Put your bike away this instant. No more fun for you, Marie. Stop.
I stopped riding my bike. I almost crawled from the garage to the door. I almost had to crawl to the sofa. I burned out my legs and they haven't completely recovered. I pushed the MG monster too hard and now I'm paying the price. Remission doesn't mean no MG symptoms. MG is still in charge. I'm just along for the ride.
Having diabetes is hard. I tried eating oatmeal. I tried eating pizza. I even tried eating Governor Tso's Chicken. I like all of those things, but what I like doesn't matter. The meter says I can't enjoy them without going high. The Dexcom buzzes and beeps they all say stop. Put the pizza away. No fun for you, Marie. Stop. Insulin boluses don't always work the way I want them to. Times like this diabetes is in charge. I'm just along for the ride.
To keep diabetes happy, I have to exercise.
To keep MG happy I have to rest.
Exercising while resting all skeletal muscles is impossible. My entire life is impossible. I'm being asked to juggle a chainsaw, a piano, and a sieve full of water. While tightrope walking 30 stories up and the wind is blowing. Does this get me down? Yes. Does this keep me down? No.
I find the predicament I am in ridiculous. I have a body that can stop moving at any time without any warning at all. I have a pancreas that doesn't work. I have an electronic sensor attached to my body. I take a handful of pills every day. I'm taking weekly chemo. And I stick my fingers eight times a day. Not to mention injecting insulin. I feel like a science fair project gone wrong. It makes me angry. It makes me frustrated. It makes me so sad that I punch through the other side of sad and end up laughing. My situation is absurd. Absurdities are often funny.
Diabetes doesn't make any sense. I can eat the same food three days in a row, give the same insulin doses and have completely different results. I can't fix it. I can laugh at it. So I do.
I can't fix MG. I can laugh at it. I often waddle like a duck when I walk. Flapping my arms and quacking, or doing the Monty Python silly walks sketch, these things run through my mind and make me laugh. When intense chemotherapy made my hair fall out, I stood at the mirror, pulling out tufts of hair and bawling. Finally I dried my eyes and found bits of eyelashes and eyebrows on the tissue. I looked at it. It hadn't occurred to me that eyebrows and eyelashes are hair. Looking at them woke up the absurd switch and I ended up laughing so hard I had to lie down.
I look for the absurd. It's what I do to keep my motivation. Sometimes it works better than others. I know how often I've driven to the local forest preserve, parked the car and lost it crying. I know how often I've screamed in my car. So when someone tells me, "You're always so cheerful," the absurd switch gets tripped again and as usual, I end up laughing.
Is this a picture of snow or is it a picture of a flower? Some would see the snow. They would be aware of the cold bite of the wind. The flower would be seen as withering, or brave, struggling against the impossible. Others would focus on the flower. They would look at the yellow crocus and speak of hope and positive changes. The flower is proof that spring is coming. Winter won't win in the end.
When I look at this picture, I see both the snow and the flower. Snow is just as real as flowers. Tears are just as real as laughter. Both exist in the world. Both can exist at the same time inside of me. Grief can yield to laughter sometimes, but still be grief nonetheless. Am I always cheerful? No. Am I always looking at the sunny-side? No. Am I looking for the absurd? Absolutely. A flower blooming in the snow is absurd. Maybe it got the wrong date for the party?
The next time someone tells me, "You're always so cheerful," I'll probably nod and smile. But, what I'll be thinking is:
No, I'm not always cheerful
I get angry
I get down
I get down
I get worried
I get scared
You just don't see me when I am
Right now I feel cheerful because your comment is absurd.
And absurdities are often funny, even when I'm not doing OK.
I have MG.
I have diabetes.
I take chemotherapy every week.
I am never doing OK.
I will never be OK.
Yet, I have learned to be OK
With never being OK.
is why I laugh.