Relativity

 Two years ago I was laying on a hospital bed and planning the music I would like played at my memorial service. I had strong emotions I would not make it to my birthday in May. And now we are waiting for the snow to melt up north so we can spend significant time at the lake this summer. I feel as good as I did last Fall. The biggest difference is my voice. It is much harder to speak and be understood. There are those relieved with this condition!

I have no delusions my ALS is healed. Plenty of evidence it is playing havoc on parts of my body. But it is progressing slowly. And slowly is the relative word here. Progressing slow enough that we are able to settle into new habits and routines. Fast enough not to be ignored. This now raises whole new questions. Is the slope of the progression line constant? No way to know the answer ahead. We will just be keen observers. 

I know the answer matters. It affects my sight line. Should I get a crown replaced that broke off? I am restricted to my wheelchair, how would a dentist even work on me? Is it worth the pain, aggravation, and money? Practical questions like these are related to my line of sight. Prior to ALS such challenges were bounded by normal questions like does this fit into our schedule? Should it be a normal crown or an implant.

My feeding tube surgery is “several months out”. Therefore I’ve decided to focus on loosing some weight while maintaining my strength. Seems those two are not in conflict.

Everyone’s has different issues. This is the first time I remember my forward line of sight seems s dominant  It is all relative.


Comments

  1. Eric SendelbachMarch 24, 2025 at 10:41 AM

    Still great to still hear your voice, in writing, and when we get to talk, even if it's a little slower than previous. Slower speech with a slower overall progression is a good mix in the possible paths, so we're just all so glad to have the time to be able to adjust with you.

    Those 'planning' moments are a great bright spot in my mind, as we know how hard it is to just exist, let alone look very far ahead when things are moving so fast.

    Regardless of what's to come, we're all very thankful for the thoughts you continue to share, and are looking forward to the time we have together, especially the time up north this summer.

    ReplyDelete
  2. Sara HarwoodMarch 26, 2025 at 8:51 PM

    Grateful for the slow progression and time. It’s not something I take for granted but rather something I recognize as a gift each day. Your voice is still loud and clear, just in different forms some days. Again, a gift I’m so grateful for. Looking forward to sitting on the deck with you, listening to the birds, watching the boats go by, and enjoying meals lakeside with the whole family surrounding us. Thankful for the blessing of being able to plan for those times while enjoying the ones we have now.

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