You may think by reading my previous posts that my days are filled with joy and insight. Much of the time I do find happiness in the moment. But, on occasion, ALS raises its ugly hand and slaps me.
The most recent episode occurred during a sushi dinner celebrating my daughters college graduation. Deanna has started referring to going out to sushi as our "canary in a coal mine." We have noticed that my physical weaknesses are magnified by the act of eating sushi. At one time, if I may say so, I was a very accomplished chopstick master. One night, I couldn't control them so I
switched to the cheater chopsticks with the clip that holds them together. Then one day at lunch, I didn't have the strength to squeeze the chopsticks enough to grab the food, so I switched to a fork. These can be trying events that just happen without any real warning. On this particular night I had
been using a fork to eat my sushi for about five minutes when, all of a sudden, I couldn't lift or control it any more. Usually, my hand will recover in a minute or so and then I can get back to eating. This time it didn't happen. My good hand unexpectedly gave up the fight for the night. It just
could not lift that "elephant of a fork" (I actually used more colorful language at the time). At this point, I felt despair and frustration. Deanna, seeing this, leaned over put her forehead against mine, looked in my eyes and we wept for a few seconds. Looking back now, the two of us having such a personal connection in a loud crowded restaurant, was a beautiful and intimate moment! It was one of those times where everything goes silent and you completely connect with your partner. Unfortunately, at that point, I didn't see it that way. I had begun to sink into a dark pit of despair without even noticing that it was happening. The rest of the meal was spent with Deanna feeding the both of us while everyone around us continued enjoying themselves. When dinner was over, we all went home. Stuffed and exhausted, I went right to bed. I slept uncomfortably until four a.m., when I woke up with an incredible thirst. I was slightly tangled in my covers and it took about five minutes to get myself free. I then had to get up. This took another five minutes of maneuvering around, resting and struggling to get to a seated position (try doing this with no arms). Next a squat thrust to stand up, failure, then another and I was up. All disheveled, pajama bottoms pulled half way down around my rear end (ladies, please picture Ryan Gosling's ass. There's not much difference! As far as you know) I went out to the kitchen. My arm just would not lift my hand let alone a cup up to the water dispenser on the refrigerator. So I flung the cup and my hand up to it and after a couple of tries I landed the move (I'd give myself an 8.5 score). Knowing I would drop the cup, I then drank the water with a straw from the cup while it was still on the dispenser ledge. That accomplished, I tried to sleep in my wheelchair (a $25,000 recliner on wheels loaned to me by the Golden West chapter of the ALS association. Thank you ALSA). At this point, I am spiraling deeper and deeper into my despair and I now know it. With my mind racing, I go back to bed. When I get to the bed, my side is a disaster and there is no way that I can possibly fix it without the use of my arms. On the verge of a breakdown, I then wake up Dee to help me. I hate waking her up since she struggles with falling back to sleep. She fixes everything and pulls my pajamas back up over my Gosling like butt and helps me back into bed. After a minute, I begin to talk to her, knowing she had been waiting. I blurt out, 'Sometimes I wish I would just die really soon!' All is quiet then she places her warm hand on top of my head for just a few seconds and then pulls it back under the covers. This gentle, reassuring touch that only she can provide me with snaps me out of it. After a minute I then say 'Most of the time I want to live forever!' She then places her warm hand on my head again and I fell asleep. I slept like a baby until almost 9 am. When I woke up, I felt light, happy and relaxed. My hand was even working better than the previous night.
These moments are like the cocoon stage of a caterpillar's life for me. I have changed physically but I have changed mentally and emotionally as well. I gain an inner strength from these events that I lacked before. I have learned to grow and to persevere from my frailties. I continue to gain insight from little daily events. With the seemingly inconsequential act of Deanna's warm, gentle touch I emerged from my despair ready to spread my emotional wings with a new vigor for life. I will not, NO, I cannot let the failure of my body dictate my outlook on life. I must devour my physical adversities and use it as nourishment to expand my mind.