This isn’t Tom and I robustly walking together on the beach in our senior years. It never will be us. It can’t ever be us. We will not retire together. When I retire it will be because he has died. We will never travel together to all of the places I wanted to see. We will never bask in the glow of our golden years. We skipped over those years sooner than we should have and felt the gold in golden for such a brief period it barely registers in my memory.
Amyotrophic Lateral Sclerosis (ALS) is a demanding disease for the person who has it and the person who cares for them. It is uniformly fatal. The longer a person has it the more challenging the care becomes. Where there were once two independent lives, moving and grooving to their own inner music, they eventually become one. One person having to depend completely on another to care for them, for every single bodily need. One person caring completely for another, for every single bodily need, including their own. Two become one.
I wouldn’t wish our life with ALS on anyone, even those I don’t care for. We have what we have and no amount of wishing will change it. I also wouldn’t trade my life for the world. Do I miss not walking on the beach with Tom? Absolutely, 100%. A thousand years ago he proposed to me on a Long Island beach, while we walked hand-in-hand in the sand. The last time we walked on the beach was a few days ago and it was baby steps for Tom. He held the handrail with one hand and I held the other arm to help keep him on track. We covered 20 steps over many minutes. It was his wish to do so while he still could. Instead of Tom doing the heavy lifting to get us from one place to another like he used to it was me who did it for him. I miss that part of us. I miss his contributions in our life. He was really good at participating. Though we will not have a retirement life together, we do not have regrets of the life we had prior to ALS or the life we have now. The most important thing is we redefine what a life well lived means to us each and every day that we still have together.