I've met a lot of PALS online over the last couple of years, all of them sharing my journey, some ahead, some behind, some beside. They too are writers, saying things in ways far better than I ever could. Here is one of them, Sarah Coglianese.
Sarah was diagnosed with ALS in 2012, after a year of random falls and unexplained muscle weakness. Previously a runner, Sarah now uses a wheelchair to get around, and she still finds the good and the funny in each day, mainly thanks to her hilarious, sweet, and massively feisty 4-year-old daughter. Here is what Sarah has to say about learning to accept help. I could say the same, except she says it so well.
When I was diagnosed with ALS at the age of 33, I was still entirely independent. Sure, my legs and feet were weakening, and didn't *quite* behave the way I wanted them to. I could no longer go for the runs that had always cleared my head. But I could drive, I could dress myself, I could cook, I could stand up.
Now, two years later, I can't drive. I can sometimes dress myself. I can't cook, unless you count heating up food in the microwave (and honestly, even that's sometimes hard.) I can only stand up if I have something very sturdy to hold onto, and if my legs feel like cooperating in that moment.
So I need help, the kind of help I've never needed before. The kind of help I never thought I would need. Everyone needs help at one point or another, and to pretend otherwise is ridiculous. But needing help much of the time is another story, and something I'm not used to yet. I'm not sure I ever will be.
Though I feel grateful to everyone who helps me get through the day, I'm still angry about this loss of independence. I'm working on ways to accept the changes in my life, and trying to focus on how I would respond if someone I loved was in this position. It's hard.
In the morning, my husband sometimes has to pull me out of bed. He has to brush the knots out of our 4-year-old's hair (knots that she didn't create herself, it was monsters in the night who put them there.) He has to help me pull a dress over my head. If he can't be there, this act alone might take me 20 struggling minutes, and part of the time, I might feel like I'm going to suffocate in my cotton blend. Do I feel depressed that it takes that long or validated by my ability to do it alone? I'm not sure. Mostly I just feel relieved to have clothes on.
Later in the day, my assistant comes. She does the housework I can no longer do. Laundry, dishes, sweeping. She heats up food for me sometimes. She drives me to pick up my daughter from school. In the moments that I can be alone with my daughter, I feel whole. This is usually a two-block roll to her martial arts class or down the street to get a cookie afterwards. We don't have much time together, just the two of us, out in the world.
In the evening, my husband returns from a long day at work. He cooks. He cleans. I do what I can to help, by reading to our daughter or watching her dance. This brings about such conflicting emotions. Small things make me happy, like just being with my family. But the guilt, the sadness, the frustration...they are all there, too, right at the surface, and sometimes their angry words slip out using my voice.
My daughter wants to do almost everything by herself. When she was younger, she would scream at us, "SELF!" if we tried to interfere with things like buckling her car seat or dressing her. It's an instinct I now understand better than I ever did before. To be able to do basic things for yourself is a right we all expect. To be able to accept help gracefully is an acquired skill. I'm still working on it.
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