Of late when a celebrity passes away I’ve found myself quietly counting my fingers and toes and wondering when my turn might come. Having reached an age where more than a few friends and family have shaken off their mortal coils, it’s not an altogether unreasonable question. And while my illness this past year thankfully never got to the stage where I was at grave risk, my CIDP drove a big enough whole in my life that I couldn’t just shake it off and quip, “I meant to do that.” Having ones independence taken from oneself kind’a has a way of knocking the smart ass out of ones interactions… At least it did for me because I quickly realized that I needed the people around me to help me do … everything and that the only thing that I could do in return was concentrate on getting better and not being an asshole or drag to them. And I wasn’t always success at the asshole thing. Funny how nurses and doctors and friends respond when you begin with a thankful smile instead of a self-centered complaint.
Salon republished a chapter, I’m Not Afraid of Death, from Ebert’s book. In it Ebert expressed thoughts that I emotionally wrestled with in my darkest hours this past year: that I’ve been one lucky bugger and that if my time was done than it had been a pretty good ride. Like Ebert, I wasn’t ready to cash it in. I still felt like I had things to accomplish and contribute to the cause, but there was no saying that I was going to get the chance. That might seem silly now, but when you lose the ability to walk and feel the strength in your hands and fingers slip away so that you find it difficult to type or write your name with a pen, it doesn’t seem so silly. And when the pain keeps you awake at night for days and weeks at a time just when sleep was your only refuge from the pain, it can seem pretty bleak.
Similar to Ebert my story was blessed by the care and love of those around me, particularly Tricia and her family. And even though I haven’t been one to have invested in a strong network of friendships over the years, I was lucky to have friends and co-workers step up when I needed rides to and from work, to physical therapy and just getting ice or warming up my lunch in the break room. When I needed the help they were there. I was lucky that way. It wasn’t dramatic, like Ebert’s wife sensing that he was still alive when his heart stopped before, but I had a friend who gave everything she could give and then some.
We used to joke when misfortune would visit, like her car getting totaled, that this was just another “compatibility test.” Alas, over a year of being in pain and six-months of being waited on hands and feet (literally) might have been more than the relationship could endure. So, while I continue to get stronger day by day, the relationship that got me this far is on hold and we’ll see what happens next.
There are no guarantees, as my mom likes to remind us. And we just have to do what we can do. So, I want to remember that I need to live each day deliberately, greet each morning with intention and purpose, even if the purpose is just to make a healthy breakfast and answer a student’s nagging question. It might now take me forever to do things that I used to blow through in 15-minutes so sometimes the gift is just to be able to get stronger and then celebrate with a great nap. Thank you, Roger Ebert, for adding your meme to the stream and voicing a confidence against the fear of the coming darkness.