this piece is something i wrote for the Romanoff Foundation blog, who gave us an incredibly generous gift for our trip to Paris. I think its one of the realest looks at my life thus far so i wanted to post it here as well…
“Living on borrowed time.” A year ago, this phrase was a cliché, appointed to things like bald tires, bouquets of flowers, patches on leaky pipes, etc. While it accurately describes the minutia of these relatively unimportant ideas, in the grand scheme of life, what do you do, when the cliché becomes you? This cliché applies to everyone. Ultimately, we are all living on borrowed time. But how much time? Would you want to know how much time? What would change? What would you do differently with the borrowed time you have? This, is life with ALS.
At this point, I find myself in a conundrum. Part of me feels like, I have been bestowed with the worst luck imaginable. 34, diagnosed with a terminal disease for which there is no cure or even treatment that can afford me more borrowed time. No answers, just experiments on my body. Research that may or may not provide insights into how this disease progresses. It’s a bleak realization, however, I DO consider myself lucky. At this moment, it appears that I have a slowly progressing version of Sporadic ALS. I am only affected in one limb; my non-dominant hand and arm. It’s been over a year since the symptoms began and I still have full range of movement in my left arm. Albeit, my arm is weak, it’s functional. My typing has become slow and clumsy, my hand and arm cramp constantly, and my bicep is in constant twitch mode, but I can still use it. I’m lucky. For many with this disease, it takes years to diagnose. It took 2 months for me. I am blessed with so many supportive friends that at the drop of a hat, went above and beyond to help me. Went out of their way to call in favors, and get me to the specialists I needed to see. Unfortunately, for so many others this isn’t the case and therefore, I’m lucky.
The physical aspect of my situation is an annoyance. A nagging reminder of things to come. The little alert that pops up when you’re having a great week saying, “just a reminder: you have ALS.” The real mind-fuck in all of this is… The mental piece. I have always been a day dreamer, frequently lost in thought, mind moving at a mile a minute. That, coupled with long commutes to and from work, often plays out as a horrible combination for my situation. Being alone with time to think, I find myself tearing up, thinking about my future, my beautiful wife, my family, what is, what could have been… Only to say out loud to myself, “Tucker, stop… Focus on the music, focus on the sunshine. Feel the warmth, taste the bitter, black coffee. Take a breath. Breathe.” And I swallow back the lump in my throat, push it down into my stomach and add another layer. After a while, these layers begin to grow. Up to my chest, into my throat until finally… I let go. Sweet relief in an unbridled explosion of emotions. (You know, crying.) It’s interesting however, death isn’t what gets to me. It’s the impending burden on my wife and my family. I worry about my wife. Sometimes it feels like I’m robbing her of the perfect life we once envisioned together. I know it’s not me committing the crime, but I feel like an accessory to it. I’ll swallow that down and add a layer.
I don’t know why I choke them back. I don’t know why I bury them for days until I melt down one random evening while lying in bed. A good friend once told me crying is not weakness. Crying is your brain expressing emotion. Sweating, through your eyes when it is under stress. So why choke them back? I have no answer. I always feel better after a good cry. Clearing the cache as they say. Undoubtedly, it’ll fill up again. However, next time it will take a little longer, and a little longer, and a little longer. Rinse and repeat.
I would be lying if I said this past year has been a bad year. It hasn’t. To be honest, this year has been an unforgettably exciting, whirlwind adventure, banner year for me. (Obviously marred with a few ruts and hiccups here and there, but I digress.) My wife and I went to Broadway, ate dinner at Le Bernardin, saw the Golden Gate Bridge, went to Sonoma, New Orleans, New York City. In April, we will be heading to Europe for two weeks to see Scotland and Paris. We have felt the love, support, and generosity of so many people, in both schools where I work, and at the Romanoff Foundation. I feel truly blessed from the outcry of support we have received. We would never have been able to experience these incredible trips and adventures without the amazing people that are helping us to LIVE. We’re lucky.
In the end, living with ALS will be just that. Living. When you’re on borrowed time, every second counts. There are no more bad days. To quote Game of Thrones, “Death? There is only one thing you say to death… Not today.” Every morning I open my eyes is a day I get to say, Not today. Today I live.