Recently, a number of close friends have reached out to me and asked how I am doing. People who I love and respect and do not see nearly often enough. People for whom a simple, “I am doing great. How are you?” does not do justice to how I feel for them or to what they are really asking. But I find that is hard to put into words how I AM doing. It is not that I have any hesitation sharing, it’s more that I have a hard time figuring out what the right perspective is for an email. It’s complicated.
In so many ways, I am doing great. That is the honest answer. I have two happy, healthy and silly kids. Mary Adair loves kindergarten and all things learning. She is in ballet and skips around the house doing all sorts of poses and routines. When we were decorating the Christmas tree, James chucked one of my glass balls across the room shattering it. Without prompting, she wrote on her Christmas list (that she was so proud to do all by herself) that she wanted Santa to bring her an ornament so that she could give it to me. Santa obliged by bringing her a “World’s Best Papa” ornament. She (and Santa) are pretty great.
James loves superheroes and all his stuffed animals. He probably sleeps with 20 stuffed animals and can give you a long winded back story on each of them and their families. Cara’s mom gave him a set of tools for Christmas and my parents just brought him my old workbench and he loves pretending to be a working man and he loves giving his Papa snuggles. I am involved with a bunch of different ALS projects and am still happy at South Carolina. Cara likes her job and we are all getting settled into our new house.
Almost 3 years after my diagnosis, my progression continues to be slow. Compared to how most folks with ALS typically do, I am still way out on the good side of the curve health-wise. Three years in, I can still walk, talk, breathe, swallow, etc. If there was an ALS basketball team, I’d probably be a first round pick (my game in high school was strong to quite strong. What I lacked in height and skill I more than made up for in fouls.) In so many ways, “great!” is the honest answer.
But to friends outside of the ALS community, that still doesn’t quite capture everything that is going on. It’s complicated. I am so very thankful that I am doing much better than we could have hoped for a couple of years ago. That’s just not to say that my progression doesn’t continue. The other day at the zoo Mary Adair asked me how strong elephants were. I told her they were stronger than 20 people and she responded, “20 strong people or 20 people like you?”
I now need her to help me get shirts and socks on and off. I have grown a beard because shaving is exhausting. I am in a constant search for the ideal pair of pants with an elastic waistband. I have a sweet pair of puffy Velcro sneakers that I wear with my orthotics. Yes Matt Bellina, I am quickly becoming a beer swilling hobo.
I can’t cut my own food. If we are going somewhere where we will be on our feet, I will either take my scooter (think rascal not razor) or wear my leg braces. I am still driving, but may have to give that up in a few months. My breathing and swallowing are still normal, but my speech is starting to be affected. If I speak for an extended period of time, it gets harder and harder. I am in the process of “banking” my voice, which involves sitting at the computer and repeating 1600 sentences. This way I will have phrases recorded and even will have a computer generated synthetic voice based on my recordings whenever I need it. Most of the sentences are pulled from the Wizard of Oz or Little Women, but every now and then they’ll be a phrase like “I have ALS and this machine speaks for me.” I am doing great, but this is the reality of what I am facing. This is the reality of what Cara is facing. This is what Mary Adair and James are facing.
Cara is constantly running around like crazy trying to keep our family going. Anything that’s needs to get done is on her. We continue to add more help around the house, but she still is taking out the trash, fixing meals, putting together flatpack furniture, wiring light fixtures, making liquor drinks, etc.
So yes, it is complicated and it is not easy for any of us. How do we look at it? In general, we take my health as a matter of fact and in many ways it doesn’t affect how we are “doing”.
Great new house. Weekly trips to the zoo. Two crazy kids. Trip to Disney World at the end of the month. A wife I love more today than 10 years ago when I proposed.
I am doing great, how are you?