I think I always knew there would be a day like yesterday. It started out fine. Two full days back from our trip and pretty much past the jet lag symptoms. A good night’s sleep. Breakfast was tasty and filling. Headed to the gym for first workout in two weeks – and it felt good to get back into the routine. Made a swing to the market to pick up some goodies.
But somewhere along the line the realization that I was sinking fast hit like a ton of bricks. I think it’s largely about the rapid loss of my speech over the past few weeks. And the difficulty eating – I am starting to lose muscle and weight more rapidly. But those growing weaknesses lead (sometimes quickly) to dark thoughts of just being trapped in this decaying body – fully aware of what is happening and powerless to slow or stop the decay.
I panicked. Blew off Roz and close friends we were scheduled to visit, and just took off to be alone. Drove around aimlessly. Did not want to “talk” to anyone. Didn’t want to spend hours getting food into my body. Didn’t want to keep sopping up the excess saliva leaking from my mouth. Just wanted it to be done.
Fortunately the panic subsided and I was able to have reassuring conversations with Roz and Simon. I know this is hard, and will get harder, but I need to work hard to keep my desperation in check.
I know I have good alternatives for both communicating and getting nutrition. I know that the many family and friends who surround me with love are willing to do whatever is asked of them to help. I know that people are depending on me to continue important work we have begun.
I know this is not yet my time.
So I need to get past these feelings of desperation and concentrate on doing my best for today. I will need your help to stay focused on today. Send me hugs and positive thoughts. Hold me accountable – my disease does not entitle me to a free pass.