General Discussion

When first diagnosed with Progressive Bulbar Palsy and given a timeline of 6 months to 2 years, I was consumed with grief. Found Jesus (thank the Lord), then set about getting my affairs in order. In fact, I had already had symptoms for at least the two years it had taken to finally reach the specialist who gave me the diagnosis. And I had symptoms at least a year or two before that, so getting my affairs in order was top priority. I was living on borrowed time.

Two months later, I got a second opinion. I did not have progressive bulbar palsy. I had another more benign (as if anything ALS can be benign) variant of ALS, which gave me room to breathe…literally and figuratively. I continued to get my affairs in order, but the pressure wasn’t on.

I began to look at all the opportunities, especially for writers. It was quite overwhelming at first. There’s virtually something for everyone. Around my retirement city they say, “If you’re bored, then it’s on you.” I AM ALS, ALS Association, pharmaceutical companies, research. It became apparent that there was this amalgam of loving people who are trying to give us community, respect, and love. I began to put my toe in the water, and everywhere I stuck it, there was Justin. He became sort of a constant. When I got on various virtual meets, I began to look for him. We had some personal convos. But mostly, he was just there. Quiet. Occasionally sending photos of him with his kids. He had a really nice Arts & Crafts-style bed I coveted from afar.

And lately, I’ve been consumed with my own stuff. Missed quite a few of our meetings. Missed Justin. Missed him for real.