“Melting Away” Chapter 107

As I sit here every day watching the muscles melt away from my body, all I can see is destruction of all the work I did throughout my life.

Three set of 8-10 repetitions per body part. 80 (real) pushups in two minutes (and none of them two inch Air Force pushups). At my peak, I could run two miles in 11min and 56 seconds, but always ran sub 13.30 while in the Army. Once I retired I promised myself I wouldn’t gain a bunch of weight or let my hair grow out. I felt it was important to look good in a suit in order to be successful. After I retired I would still workout - maybe not as consistently as I did in the Army - and some years were better than others. My first job after the Army was in Cuba. I was there for 45 days and then home for 45 days, so I was able to go to the gym daily. Over the years I would workout at home and run a few miles. When I was 44, I practiced and ran my first and only half marathon. Then I realized that was a bit much. I mean really, why would I ever need to run that far? Most animals and zombies won’t chase you past a ½ mile. As long as I wasn’t the slowest person running from them, I should be safe, right? When we moved to Virginia I did CrossFit for a while. I did ok keeping up with the youngsters, and I never came in last. So, when my ALS kicked in, I didn’t know what to do.

One question I was asked early on in my ALS journey was, “Is there anything you regret not doing?” Honestly thinking about it, I would not change anything about my life. Of course I didn’t know I was going to get ALS. I still lived a great life before my diagnosis, and still do now. However, I realized over the past two years that I would have loved to have tried a few things. I enjoyed cooking, but would have done it more. I should have loosened up more with others at work. I should have taken a few more trips (I did travel quite a bit and had a great time). I should have bought Amazon stock and Bitcoin years ago. All that said, who cares? Besides I am rambling and got off topic.

Back to my main point. As my muscles melt away, we have implemented a few things to adjust for losing the fat and muscle. Anyone who sees me in my wheelchair will see purple egg crate foam, which we've affectionately named “Purple.” I have purple under my ass, arms, head, and anywhere else bones rest on the chair for a little more comfort. I use 4x4 gauze between my lower lip and teeth to prevent drooling. My facial muscles on my jaw have melted away as well. This has caused my lip and lower jaw to hang down and I can’t close it, so my loving and inventive daughter decided to try and help fix it. I can guess what you are thinking, “‘Purple,” right? Nope she used tape. 

At first she tried a piece on both sides, but I ended up looking like a $2.00 hooker. Then we tried only on one side, but I looked like I had an ALS stroke. Underneath didn’t work, but it was also another reason why I was glad I never grew my retirement beard. Finally we tried the top to bottom look because I talk too much. Regardless of how we positioned the tape, nothing stopped the meltdown.

What do I miss or wish I had done before ALS? I wish I did gain weight after retiring and had more fat on my ass right now.

Love and Blessings 

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