Having ALS — or any progressive illness — can be a lot like that proverbial camel. It plods along just fine, taking little note of the bits of straw being added to its pack until one day, that last straw that’s added to all the thousands of others does the impossible. It breaks that poor camel’s back. One little straw. One tiny added burden.
The progression in my case is relatively slow. We’ve gotten into a routine that seems to work just fine. I do my same transfers from bed to power chair, from power chair to recliner, etc. Sometimes things are more difficult due to fatigue, but we manage. Then something seems to change. Suddenly, what worked the day before doesn’t. Leaning at the kitchen sink to wash a few dishes becomes exhausting. Lifting my legs up onto the footrest of my power chair seems incredibly difficult. My feet feel like lead weights have been added to the soles of my shoes. Turning the pages of a book, magazine or newspaper requires dexterity that has abandoned me. Forget opening most packages.
These past few days have been challenging for me. Friends and family have remarked to me that they find my blog posts inspiring and uplifting. That they love my attitude. Well, dear ones, this attitude of mine of late has taken a turn. I’m trying hard to stay positive, but there is no question that I’m getting weaker. Absolutely every activity is more difficult than it was even a week ago. I do not want to give the impression that I’m blissfully accepting what I cannot change. I have no fear of death. My faith has not faltered. God has me in the palm of His hand, but this child is scared nonetheless. I feel it’s important that I be honest here and tell you that, yes, I do indeed get discouraged.
Discouraged? Actually that’s putting it mildly. Yesterday, my brother called to chat, and I ended up sobbing, blubbering, sniffing and generally pouring out my guts to him. (Sorry, Doug.) He’s a great listener as many of you know. And I did feel somewhat better after we talked. But there were more tears off and on throughout the day.
But let me tell you about this morning.
Alan helped me fix my tea before leaving for work. A few minutes after he left, I put my breakfast hot pocket into the microwave, turned my chair and started to roll, somehow catching the kitchen rug we keep by the door in my wheels. The rug was left partially folded over. I have a “grabber” I use to help me pick up things on the floor and I thought, “No problem. I’ll just go get the grabber and straighten this out.”
Well, there WAS a problem because the rug was between me and where I needed to go. There wasn’t room to go around it. So I rolled over it. Oops.
The rug somehow managed to become entangled in the underside of the chair. Any movement forward or back, turning this way and that, only seemed to make things worse. I even began to tip at one point.
So here I am, rolling around, getting my breakfast from the microwave and taking it to the table, dragging a wadded up rug along.
|Image © Walt Disney Animation
In my mind, I could hear the Genie from Disney’s "Aladdin" saying, “I can’t believe it; I’m losing to a rug!”
Thankfully, my sister and brother-in-law live close by, and Les came over to rescue me. There’s a bolt on the underside of the chair that allows me to lock into a bracket in our ramp van. The rug had caught on that.
Boy, did I need that laugh! My mood brightened and though the problems are still there, I know we’ll get through them. We’re looking into getting a lift of some sort to help move me when I have trouble. And God is looking out for me. It’s my belief that He directed this rug incident just to make me see the humor I was missing and to remind me that all is not doom and gloom.
So the poor camel’s back isn’t broken after all. Just a little sore. I hope whatever burdens you are carrying today may be lightened a little by a bit of laughter.
Originally posted March 19, 2013.
About the Author
Hi. I’m Patty, and I’m a wife and mom to two grown daughters, and I'm in my 50s, dealing with amyotrophic lateral sclerosis or ALS (also known as Lou Gehrig’s disease, or motor neuron disease). This blog is my journey through uncharted waters. People ask me constantly how I’m doing. The short answer is “OK.” I add “so far” in my head most times. So that’s what I’m calling this little corner of the interwebz, OK, So Far. So if you’re up for it, come along on this roller coaster ride known as my life. I can’t promise much in the way of entertainment, but I’ll try not to be too boring! Thanks for stopping by.