ALS is weird. For me, at least. Sneaky, too.
I go along thinking, “Okay. We’re doing alright. Holding steady.” And suddenly what was already difficult gets even harder.
Take talking, for example. I’ve had speech difficulties for a while now. Those who are with me a lot usually can understand me. Well, they could until recently. Now even Alan has trouble. Everyone tries so hard, I know. They listen closely. I find myself “pointing” with my eyes, as I am now, typing this. Funny. That doesn’t seem to help much.
It’s so strange to open my mouth expecting to hear one thing, and something quite different – and quite unintelligible – comes out. I try to say, “Could you move my arm?”, and the mush that comes out is met with a blank stare as he/she tries to work out what I want. They try guessing. “You want the TV on?” I shake my head. And try again.
And so it goes …
I don’t always have Tobii in front of me. During transfers, I am learning to refrain from any attempts at verbal communication. Alan needs to focus on operating the Hoyer lift safely. And when we’re driving somewhere ... no more light conversation.
I really miss the back-and-forth, banter, one-liners, snide observations, etc. If I have a question, or something I need to tell him, I have to try to remember it for later. Often it’s not that important, so I just let it go. Sometimes that feels like another thread that connects us breaking. Ouch.
|From Patty: So true. Found this on Pinterest. Click image to read an excellent article from a couple years ago by someone else with ALS.
Then there is this: Sometime in the last week or so, whatever muscles that were working to enable my right hand to drive my power chair have succumbed to the relentless onslaught of ALS.
Yep. I can no longer drive. How ironic. We went to the DMV last week to obtain a California I.D. card. My driver’s license expired and I needed a valid identification card.
This really wasn’t a sudden loss. As with this whole journey, this change we saw coming. Months ago, we had “attendant controls” added to the back of my chair. Alan is quickly learning to drive. It’s not as easy as you might think. Especially tight maneuvers such as in and out of the van, narrow doorways, etc. I keep expecting to hear a recording – a la Disneyland – “Please keep your hands, arms, feet and legs inside the ride vehicle at all times.”
As bad as each loss is, there continue to be blessings. My education continues. Learning to listen more; talk less. Learning to be still and trust in God’s plan. No tears this time. And what peace there is when I just sit back and let the Lord carry us.
One of the greatest blessings is still being able to find humor in all this mess. Alan’s “guesses” as to what I am attempting to articulate crack me up. And when several people are present, it can turn into a hilarious round of charades, complete with cheers when I finally nod at a correct guess. :-)
I have thought about ordering a “Student Driver” sticker for Alan to wear as he learns to drive my chair from behind. ;-)
At our MDA ALS support group last Saturday, some shared stories of driving off the edge of the ramp when exiting the van, something I managed to do that very morning. (I was almost to the bottom, okay? No harm, no foul.) Much laughter ensued. You gotta laugh!
Of course, we do have to be careful. That off-roading incident resulted in me having my permit revoked. Oh, well …
We made it to church Sunday, which is a major feat for us. The love and encouragement there lifts me so! I feel like a feather floating along in a soft breeze. All we are going through, God goes before us. Many pray for us regularly and for that I am so grateful.
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
“The peace of God … ”
One of my favorite composers, John Rutter, wrote a lovely piece of music called, “A Gaelic Blessing.” Years ago we sang it in choir. Listen to this recording by the Cambridge Singers …
A Gaelic Blessing:
Deep peace of the running wave to you.
Deep peace of the flowing air to you.
Deep peace of the quiet earth to you.
Deep peace of the shining stars to you.
Deep peace of the gentle night to you.
Moon and stars pour their healing light on you.
Deep peace of Christ,
of Christ the light of the world to you.
Deep peace of Christ to you.
This blog was posted originally on Jan. 19, 2015.
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.