Thursday, December 22, 2011

My MG Is Not A Car

What would you say if I told you, “I’m sorry. I couldn’t cook dinner because the potato peeler was too heavy.” Or, “I didn’t wash the dishes because I couldn’t hold the sponge.” Would you believe me, or think I was lying?

I have myasthenia gravis. Ordinary household objects like can openers, mops, and bottles of laundry soap can be hard for me to use. More than once I have had to stop peeling potatoes because the peeler felt too heavy.

Doesn’t that sound ridiculous? How can a potato peeler feel heavy?

The official answer uses imaginary words like neurotransmitter and nicotinic acetylcholine receptor. Those nonsense words make my eyes glaze over. So, let me just make MG easy to understand.

That lamp across the room is plugged into a socket. If you were to switch it on, the circuit would complete, lighting the lamp as always. But, what if the socket and the plug were loose? Instead of lighting up your room the lamp flickers like a disco ball. Sometimes it stops working all together. But, other times it seems to work fine. There is nothing wrong with the socket or the lamp. It’s the junction where the lamp plugs in to the socket that is faulty.

With myasthenia gravis, there is nothing wrong with the brain, or the nervous system, or the muscles. The problem is in the junction where nerves talk to muscles. The messages don’t always get through. So instead of peeling potatoes, my hands just stop moving. My strength flickers on and off like a disco ball.

I have generalized myasthenia gravis, which means that all of my muscles are weakened by MG. From the muscles that raise an eyebrow, to the muscles that wiggle a toe, my entire body moves, and stops moving, at random. If I rest, my strength returns. Then it disappears. It is as if I live on a world with heavier gravity than most people. The more I move, the weaker I get. As I get weaker objects feel heavier to me. Most of the time it makes me laugh. It really is ridiculous to be too weak to hold a potato peeler.

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