Nearly four years from the onset of symptoms, my ALS progression continues. It is impossible to ignore. Lifting a fork or a spoon to my mouth is a huge challenge, so much so that I can feel my days of comfortably dining out coming to a halt. Being hungry and struggling to eat is extremely frustrating. Doing it in front of strangers does not add to the fun. I am now a two-handed eater, supporting my right wrist with my left hand, and still spilling often. I swear I used to be a graceful person, but now there’s an earthquake inside of me, shifting and shaking in ways I can’t control.
My fingers feel stronger than my arms in some ways, but then I try to get my contacts out, and it’s basically just an exercise in hope. Hope this works, hope I don’t stab myself in the eye again, hope somebody comes up with something soon to get some strength back in these hands before I have to consider eye surgery on top of everything else.
I’m not opposed to eye surgery. It would certainly make things a lot easier. But maybe I should just wear my glasses. [Immediate flashback to 3rd grade and a giant pair of purple glasses that covered my face. Then braces. My awkward years were extensive. Character building?]
I wonder when Scarlett will need glasses. Rob has had laser eye surgery, but he and I both had bad vision as kids. If you’d dropped us in the middle of the woods without our corrective lenses, we’d still be there right now, food for wolves. I am clearly not the poster child for a Survival of the Fittest campaign.
Honestly, is there anything in my body that works correctly? I’ll give this some thought. I’m pretty good at crossword puzzles, but only when my contacts are in.
Perhaps I’m being a tad dramatic. I’ve been known to do that. Scarlett was flailing around the other day, complaining about an issue I’ve since forgotten, and I looked at Rob and asked, “What is with the drama?”
“I have no idea,” he said, somewhat wearily. “You’re the expert at drama.”
I felt flattered, despite knowing that it was not exactly meant as a compliment.
Of course I’m not being dramatic when I catalog the changes in my body. But to throw up my hands (which I can still do, kind of) and say that all is lost is simply not true. These are the hardest moments, though, the days and weeks when I must adjust to a new lack of ability. And yet, I always do eventually.
I think the scariest parts of this disease are the times when you find yourself in need of a new assistive device, and you’re not psychologically prepared. My breathing ability has declined, too, and there are things that can be done about it. Primarily, getting a BiPAP machine to assist air in moving in and out of my lungs at night. But this involves a mask, and I don’t like masks. I am especially very sure that I don’t like sleeping in them.
Still it is likely the next step, and I’ve learned with this disease that when you are ready, you have to take the next step. Even when you can’t walk, or stretch your arms to the ceiling, or expel all of the air out of your lungs in a manner that would satisfy your former yoga instructor.
Arms, shoulders, fingers, lungs…that’s where we’re at today. It sounds like some twisted children’s song, chanting body parts as they fade to uselessness. How’s that for dramatic?
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You’re always in my prayers, Sarah
Hey,
I am missing sales conference because of this mystery virus that has taken my hearing and strength. Why don’t you come on down to Asheville and we can play hooky together. I’ll help you with eating if you help tell me what sounds I’m missing.
Jon
Deal. I’ll bring my heels! xoxo and feel better soon.
I’m with you on this one, sister, especially when it comes to assistive devices. I am not looking forward to BiPap, and I know it will come. I am grateful I can still drive, but that is leaving me too. But I do love to hear you talk about Scarlett and Rob. I would love to meet them someday.
I cry for what you are losing and I cheer for how you face it. I am seeing you in your Divine radiant light. Wishing you blessings and the cure — now.
Dear Sarah, What a tough road!!! It’s difficult to imagine. Here’s a thought: use the soothing power of music to take you away. Try some Mozart! Music can help you, maybe? Sending good thoughts to you!
Just to let you know: I’m enjoying my retirement quite a bit. I left teaching in June 2003, promptly got a minor breast cancer thing (stage 0, non-invasive) and I had a lumpectomy and everything is fine. But, it did make me realize how precious life is. I began traveling, to Europe and to Japan. I’ve been trying to suck every last enjoyment out of life! I’m still active in music, playing violin with the Symphony of Oak Park & River Forest, attending a weekly yoga class, a weekly Pilates class and, most importantly, a weekly meditation group. You might consider meditation. It’s a beautiful way to be at peace with whatever life brings.
Best wishes, and I’ll always remember you as such a lovely student and your whole family as absolutely fantastic folks!
Thank you, Mrs. Rexford! So happy to hear you are out and enjoying life. Big hugs to you–and I’ll listen to some Mozart this afternoon.
Sarah,
When I bury my face in my dog’ s furry neck and say my prayers, you will be deeply remembered.
Sarah, I really enjoy your blog. I was diagnosed in January 2014 and have similar hand and arm issues. Eating is an adventure and not necessarily something for public viewing, particularly when food is still dangling from and falling out of my mouth even when I lean so far over my head is almost in my plate. I try and tell myself to not worry about how other people think but never figured that one out. Tried a bunch of adaptive utensils with wrist braces but never worked very well.
I appreciate that.
Thank you, Rick. I’m thinking of buying stock in straws.
You are brave, insightful, and a wonderfully gifted writer. You make me feel like I can do more and be better. I bet your readers are better people for having read the blog. I know that this cannot replace the abilities you are losing, but in some way could be a new service.
My mother was diagnosed recently, with a different onset, and I know that your writing is a great help to me.
Gideon, I’m so sorry to hear about your mother. What you wrote means a lot to me. Thank you!
Hello Sarah,
I am thinking about you often because you are a very inspiring. I am following with interest the movement aboit GM 604 and I am very hopeful that we will get positive result somehow. Hang on there , I am hopeful help i will come to everyone affected with this diabolic illness. Each case is different and I wish you my very best so you can be with daughter and husband for a very long time. Adele from France
you are amazing sarah. and your writing is so amazing – because it is real. i appreciate it so much – we don’t get to see each other as much as i’d like but i love this insight and way for me to learn whats going on. so when we catch up we can just have fun as we did tonight. or deal with dramatic 5 year old girls as you do when you have 5 yo girls
.
i can’t write enough of these but here goes
xooxoxoxoxoxoxoxxxxxxxooooooooooooxoxoxxoxoxoxoxoxoxoxoxoxoxooxoxoxoxoxoxoxoxoxooxox
I love you!
I so appreciate your insights Sarah. I left my otherwise healthy 44 year old husband today sitting on the edge of our bed with the bipap mask on his face, hunched over trying to catch his breath and adapt to a machine to do so, the first phase of an attempt to sleep, which he has not done fully in weeks. He was only diagnosed in November, with bulbar onset. It is absolutely horrifying and completely devastating. We are near Boston and he is with the top doctor at MGH, but there is no stopping this disease, as you know. I am still trying to wrap my head around it all. I wish you strength and continued courage in your journey and thank you for sharing your personal experience.
Thank you, Rebecca! Much love and strength back to you and your husband.