I feel like a giant jerk face for even saying I identified with a book about ALS, but I did. Let me start by saying that having MS is not even close to having ALS - besides the fact they are both neurological diseases.
I feel guilty finding similarities in the two because comparing a disease that is rarely fatal to a disease that is almost always fatal is like comparing the flu to pancreatic cancer. I like to read personal memoirs from people who have diseases. Mostly because I find it interesting, and partly because I treat people with these disorders and text books don't give you that human insight. Also, if I end up being able to recommend a book that will help someone through a rough patch, that's a plus too.
So, here are some passages that I really connected with from I Remember Running, The Year I Got Everything I Ever Wanted - and ALS by Darcy Wakefield.
"Someone asked me if I was prepared to be a different kind of mother than I'd always imagined. It was a good question - I always figured I'd be the mom who plays basketball with her kids and bikes and hikes and swims with them."
I don't think I am prepared for this. When I picture Zoe at running around age, I am right there with her. Running in the park until she's exhausted...passing a soccer ball for hours...playing at the beach all day. If I am honest with myself, I won't be doing these things with her. At least not for the time frame I would enjoy. I could probably kick a ball with her for 10 minutes, but that activity would make others not possible. Energy is on tight reserve. I can do moderate things all day, or I can do one high energy activity and then nothing else. I try hard not to put myself down for the things I can't do, but this statement really helped me.
"I know now that there are all kinds of mothers. The qualities that will make me a good mother are qualities I haven't lost with the ALS; that if anything they've only gotten stronger."
"These days, my body considers a good workout getting the groceries or doing the laundry, taking a shower or getting dressed."
Equating these daily activities to a workout is so spot on. In the middle of a relapse, I feel more tired after washing my hair than I used to feel after working out for 2 hours. My body works HARD to do these normal things. Caring for a 9 month old, taking a shower, and doing a load of laundry feels like a marathon. I certainly had no interest in running a marathon when I was healthy. Healthy me wouldn't have done the elliptical for 30 minutes, played racquetball for an hour, lifted weights for an hour, and gone to a 90 minutes yoga class all on the same day. If I had, I certainly wouldn't have expected to do the same thing the next day. I can't ask that of my body now. One thing a day. Two on super good days. More than that is unreasonable and unfair to ask of myself.
I really enjoyed reading this book and I appreciate that Darcy took time out of her too short life to write it.