My dad’s been sick since I can remember. If you asked me to mimic his pre-illness gate, the stride to his step before he started leaning on a cane, I couldn’t. If you asked me to recall the way his voice sang along to the Bee Gees as we harmonized together on road trips to Ogunquit and Nantucket, I couldn’t. I’ll be thirty-five in March and of all the years I’ve been on this earth, my dad has been sick for most of them. Twenty-six to be exact. The only non-sick recollection I have involves two skis, two poles and a whole lot of snow. For some reason, the mountain is the only memory of my dad healthy. Bedecked in his chocolate stretch pants and Norwegian wool seater, I can perfectly remember his skiboot swagger as I trailed behind him en route to the counter to fetch some hot chocolate or as I followed him back out to the slopes to squeeze in a few more runs. I love those memories. I love closing my eyes and thinking back, momentarily reliving those days.
As much as my dad’s been sick, and as much as I wish he were healthy, his illness truly doesn’t stand out. The way you take a breath is the way I approach his condition. I don’t think about it. Just like you don’t question if the next breath will be shorter or deeper than the last. You don’t pause to will yourself to inhale or exhale. You simply draw air in and expel it out.
Around two years ago, a client learned his wife had ALS. It took twelve months and visits to specialists in Ohio and New York and a bunch of other states before they had a name for what was causing her one and only symptom of deteriorating speech. My dad thought it was MS. Someone else thought it was psychosomatic. It wasn’t until ALS was noted that everyone stopped playing name-that-disease and started feeling lucky it wasn’t them. Since the diagnosis, she’s deteriorated significantly.
I’ve had very little contact with the wife though my dad has until recently kept up with her via email. I have however communicated with the husband, helping him navigate the healthcare system and fight for additional benefits when the carrier otherwise claimed the allotted amount had been exhausted. And while I’ve been doing this job for almost a decade, this task has only furthered my theory that trying to get an insurance company to do the right thing is harder than picking up a piece of mercury with nothing more than your fingertips.
Earlier this morning, my dad forwarded me an update on the wife. It was a quick email from someone else and while I would never cut and paste the exact wording in this space, I want to note just a few tidbits. Like the fact that she can now only move her head. Though this ability is waning as her neck muscles weaken further. And the fact that even in light of the challenges that face them, the husband took her out on New Year’s Eve for a movie and some celebrating. Yes, you read that last word right - celebrating. Because as hard as it gets, sometimes not thinking about it, existing as if an abnormal life is actually normal, is what gets you through the day.
The thing is, my dad’s health has always had a question mark as the punch line. Today and tomorrow are never the same. But somehow they’ve always ended up being more similar than different. He relied on a cane for probably ten years, maybe even more, before determining a walker would be better suited for his balance needs. Ten years. This woman has been sick or at least managing symptoms for less than three. She went from having a hard time annunciating to relying on her eyes and a keyboard to communicate. Today and tomorrow are never the same and maybe that’s the moral of the story.
All I know is, when I hear about her deterioration, I desperately want to quit my job, sell my condo and live my life gallivanting around the globe. Because if I died tomorrow, if I had one week to live, I’d be utterly distraught by all I never got to do. That I never sat in an open top Jeep and peered out at the giraffes and lions and elephants roaming around Kenya. And that I never stood amongst the structures the compose Angkor Wat. And when I listen to her husband plead with me to help him help her, I desperately want to fall in love with a man who will do the same for me. To wake up every morning, glance over at the person lying next to me and feel safe and comforted and insanely luck that he is there with me, for me. Because being there for someone when things are good is the easy part. It’s being there when the chips are down that’s tough.
I don’t feel sorry for myself. Please, I’m more than aware of all the good fortune that has come my way. Like when I snagged two pairs of Prada sandals at 70% off, I knew full well I was a lucky girl. Or when Anders looked up from his breakfast plate dotted with pumpkin muffin crumbs and out of the blue told me he loved me, I was completely aware of how grand my life can be. Even still, sometimes seeing how other people live, the way they gracefully manage landmines I have unexpectedly sidestepped, sometimes that helps make my sweet life that much sweeter.