According to my doctors, there is no turning back from this disease, amyotrophic lateral sclerosis (ALS), and it will slowly kill me by making my body kill itself. ALS causes motor neurons (nerve cells) to degenerate and eventually die. As they are dying, they have more and more difficulty sending impulses to the muscles we all use for voluntary movements, from walking to writing to belly laughing to breathing. For me, breathing is the key word here. One of my first thoughts after diagnosis was that, one day, I would suffocate to death because I would no longer be able to move my chest muscles to breathe. Those muscles, which once allowed me to catch my breath while playing sports and that still allow my loud mouth to (unintentionally) disrupt quiet places, will eventually betray me and cause my death. Not better than Hawaii yet, huh?
Before that happens, other muscles join in on the fun. Currently, my legs and feet refuse to work, my arms tire with putting a shirt on, and my torso cannot bear to sit in an upright position for more than a few minutes. Although I have 20/15 vision in both eyes, ALS has weakened the muscles and my eyes tire quickly; in order to spend time on a computer or to read a book for any length of time, I have to wear reading glasses so that I have less eye strain and pain. I am no longer able to use a normal bathroom, get in and out of a car, or cook an entire meal. Yep, my muscles are havin' a good ole time being lazy.
In spite of all of this, I'm still happy to have experienced this diagnosis. It's dismal, it's scary, and it's the last thing I ever wanted in my life. But it has shown me a beauty and a grace I never expected.
So, how can this be better than chocolate? Very simply. Like most enjoyable things in life, chocolate is a quickly passing delight. Even if we use all of our senses to take in the chocolate before we consume it, it is going to be gone. Sure, we can buy more, but how many times have you eaten a bit too much of a good thing, and you found that the more you ate, the less delightful it was? That is because it is no longer a special treat. It is taken for granted.
Just like life is.
I can count on one hand the number of people I know who do not take life for granted. It's a sad side effect of living in a country where most of us can have whatever we want when we want it. Almost nothing is special because it's too easy, too accessible, or there's too much of it. We get bored of these things and want more things that we become bored of. We spend so much time acquiring these things that we are missing our lives that are hidden beneath all of this junk and all of this busyness.
That's where my terminal diagnosis comes in. On the day that it was confirmed by a third neurologist, I found myself out in the rain after my appointment. The raindrops fell on my uplifted face, just as it fell on the woman who rushed past me to get to her destination. The difference was that she was trying to escape the rain, while I was allowing it to wash over me. This is a big deal! That's exactly what I want you to know: you are missing the precious moments of your own life. You may not revel in the idea of standing in the rain and getting wet, but how many times have you been the lady rushing by as life happened around you? Do you escape the wind to save your hair, and miss out on the kiss of fragrant, fresh air? Do you feel annoyed by your kids who want to excitedly share an idea with you, because you need to cook yet another dinner? When was the last time you listened to silence, and realized that even silence is filled with sound?
That's why I love that I experienced this life-altering, perception-changing diagnosis. I notice ants carrying things across concrete, and the caress of the wind is only bettered by the hugs of my children and husband. It makes me sad to think of all the things I missed before my diagnosis, because I was so busy with nothing. Because that's what all of that junk and busyness is. Nothing.
Although I still have responsibilities, I now fill my life with family, friends, love, happiness, fun, and joy every moment that I can. The things that matter. What a wonderful life I now have. Thank you, ALS.