A Day in the Life of Kerri
by Kerri Sweeris
I would ask you to close your eyes and imagine, but then you wouldn’t be able to read my story! SO….PRETEND to close your eyes….I would LOVE it if you really took the time to do this. June is National Myasthenia Gravis Awareness Month. I consider myself an advocate of sorts all year round, but try to hit it harder in June.
Imagine: that you wake up every morning with a pocket of change. Sometimes it’s full, sometimes it’s not so full. Everything you do every day costs something. So say this morning you woke up with a quarter, 2 dimes, 2 nickels, and 3 pennies. Getting out of bed, downstairs, making coffee and breakfast and the pennies are gone. Make breakfast for your son, get him dressed, going potty 3 times in 12 minutes, and put the dogs out. Dime number one: adios.
Your husband wants the dishes washed and table cleared off every day. Dime number two: arreviderche. Your son wants you to read to him. He wants 5 stories. Both nickels disappear. You here it is, not even noon, and all you have left is a quarter. You have laundry to do, cleaning to do, other chores just straightening and organizing, you have a very active almost 4 year old and 3 dogs to take care of all day, you’d LIKE to do something for yourself, spend some time writing, you’d LOVE to take a shower, have lunch with a friend, you’d LOVE to make dinner…you’d really like to run to the store…but you can do ONE of those things, and your coins are gone, and so is your energy. Game over. But yet you have to somehow carry on for the rest of the day.
Imagine: that you breathe through a hole in your neck. That you need to do breathing treatments and change this trach and clean it twice a day and try to keep it from getting sore or infected. And sometimes it hurts.
Imagine: You try to grab a can of pop. It falls to the floor. You try to cut your food with a knife; you have to ask for help.
Imagine: you can’t speak clearly enough for people to hear you on the phone and you have to quit your job.
Imagine: sometimes you can walk up the stairs, sometimes you can’t. Sometimes you can take a shower by yourself, more often you can’t.
Imagine: your independence is all but gone. The thing you love most, to sing, is stripped away. You love to read, but can’t read for long periods of time because you get double vision.
Imagine: you can’t go outside when it’s too hot, humid AT ALL, or too cold. Because you have a trach, you can’t swim.
Imagine: many of your friends don’t know how to handle you, or think things “aren’t that bad”, so they don’t hang around you anymore.
Imagine: you either receive judgement or pity, neither of which you want.
Imagine: you have chronic pain from all over muscle weakness and atrophy.
Imagine: YOU know you are the same person in your brain and in your heart, but your body has completely betrayed you.
Imagine: you lie on the couch…oh, wait…can’t do that; you can’t breathe if you do.
Imagine: some people think you’re a hypochondriac.
Imagine: you become depressed. You are such a social person, but you can almost never go anywhere independently. You are isolated.
If you can imagine all of these things, you will know what it’s like to have Myasthenia Gravis. There is no cure. If you are interested in learning more, or donating to help find a cause for this horrible disease, please go to www.myasthenia.org, the MGFA website.
Thank you so much for sharing your story here, Kerri!