Limb-onset ALS follows a more or less predictable pattern of progression, moving from the peripheral limbs inward. Every case is unique, of course, but those of us with this particular type of ALS pretty much know what to expect in terms of limitations.
I went from an active and very busy middle-aged woman to one who fell now and then, necessitating a more careful and slow lifestyle. Then came the walker. Then the AFO making driving impossible. The fatigue slowly shut down my housekeeping and cooking activities. Life, for me, came to a grinding halt, it seemed.
Once the diagnosis was confirmed, we no longer thought about “one day, when Patty is feeling better.” Expectations changed. I would never resume doing the laundry, shopping, errands, or cooking. Scary thoughts, at first anyway.
After we had come to accept reality, we began thinking about ways to manage. Before we moved into our house here, we had doorways widened, a ramp installed, the bathroom made more accessible, and rented a hospital bed. Based on what we learned about ALS, we expected that eventually I would become totally immobile. That is the road we are on.
But, what if…?
Sunday, Christians around the world celebrated Easter, remembering that day Jesus rose from the dead. Jesus, the One who healed so many.
What if I were healed? Think about it for a minute. What if He decided, “Okay, that’s enough. This ALS is now gone from her body.” (Or words to that effect.)
What would I do first? I mean, besides thanking and praising Him profusely!?!
First of all, I would hug the nearest person! I miss hugging. I am the grateful recipient of lots of hugs, but I wish I could hug my husband and my kids and my mom and all of my family. I wish I could hug my friends. I would become a hugging fool!
Actually, perhaps the first thing I should do is take a nice long shower! Alan keeps me very clean, but it would feel wonderful to take care of this myself. It’s pretty funny, but I did not think of this right away. I came back and added this paragraph. This, from someone who used to shower every day, could not go to bed without a shower first, and was known to, on occasion, shower twice in one day. Funny, huh?
Next, I think I would need some time alone with my piano. All of the music inside me needs to come out. All the stuff I learned by ear needs to be played again. Then I would dig out my music books and re-learn how to read music. It’s been a long time.
After that I would attempt to familiarize myself with my kitchen. I have no idea where anything is in there. Maybe I would fix myself something to eat. Then I would take an inventory of the foods on hand and decide what to make for dinner! Next, I would put on some “music to cook by” and get to dancing in my kitchen! Rattle those pots and pans!!
Before I could venture out on my own, I’m pretty sure I would need a refresher course in driving. It has been a very long time since I was behind the wheel. More than two years. I’m not sure how much I would remember. Maybe it’s like riding a bicycle and you never really forget?
Once I was doing pretty well driving, I would call up my handbell director, Joe, and ask, “Please, may I come back and play again?” :-)
There would certainly be a period of adjustment. It would be a whole new ballgame. Expectations would be completely changed. A new reality. A good reality, for sure, but still new.
I believe in miracles. They happen from time to time. Little ones happen every day. The big ones are more rare, but I know they happen.
Though I would welcome it, I am not expecting to be healed. At least not here. The day will come when I am no longer subject to the tyranny of ALS. And I look forward to that day!
God always gives His best to those who leave the choice with him.