- When I was a younger I, like many do, tried to imagined what it would be like to be paralyzed. I assumed that the paralysis wouldn’t be the result of anything other than a traumatic event resulting in immediate paralysis. I would think about the sheer terror I would be feeling at the moment that I realized I would never walk or move my arms again not to mention the other losses I would have to endure. After a few moments of cringing I would finish this ridiculous exercise in futility and think how ridiculous the thought of it was. The odds were too remote to worry about it anyway and I was right to think so. One cannot live in fear of such remote possibilities and be a productive member of society. The funny thing is, I never once imagined what it would be like to become paralyzed in a slow and progressive manner like I have with ALS let alone die from it. Hell, it would have been a waste of time since I would have been so completely wrong on what I thought it would be like anyway! I have been asked what ALS is like by more than one person so I'm going to try to explain it to you. A fellow PALS "Person with ALS" Steve Gleason describes it this way, "Imagine yourself crawling head first into a sleeping bag and once you are in there, try to take off all of your clothes and then putting on another set of clothes." I must add, that you need to be out of breath from running a mile first and all the while you are doing this someone is sitting on your chest making it very difficult to breath! Meanwhile, your hands and feet are tied up and cannot move. Also, the next time you are sitting next to someone try to move their hand with just your thoughts. ALS is kind of like that!'
- Even with all of that going on I did have one heck of a year! Dee and I celebrated our twenty fifth wedding anniversary in September with eighty close friends and family. My wonderful friend John Faltys and his family single handedly put on a fundraiser for our family that was attended by one hundred wonderful people. We celebrated Thanksgiving with Dee's mother, her two sister's families along with all of my brother's and two of my nephews from my sister's family. I have very talented musicians on both sides of the family so I informed them all that I wanted lots of music this year and they delivered big! I sat grinning, beaming and crying tears of joy as I watched all of my nephews, my brother and sister in law, my son and even my daughter's boyfriend play and sing for us. What a magical evening and truly my best Thanksgiving ever! To finish the year off there was our annual Christmas Eve fish fry with all of my siblings and about fifteen friends. Oh, then there was Europe!
I have not written in a few months which is due to the loss of the use of my left arm. I still have the use of the fingers on my left hand but they are very weak. Therefore, this entire post is a being written with my right big toe. I thought I would bring you up to date on what I have been experiencing over the last couple of months. In November, my left arm gave up the fight making many of my daily activities difficult at best. Which, as you might think, has been very difficult for me. Just prior to that time I was able to use my I Phone for most of my communication, social networking and writing needs. Then, all of a sudden, I couldn't lift my phone anymore making my life much more complicated. I would lay the phone on my lap and use my index finger to tap the necessary functions but that soon ended too. Then my wheelchair, which has a joystick controller, became almost impossible to control. The spring resistance, which to an average person would be unnoticeable, was like opening a refrigerator door with just your index finger. Sure it is doable but takes a lot of effort! Also, at the beginning of November, I received a new hospital bed but my insurance company denied the special air mattress that my ALS team prescribed for me. So I was left with a regular mattress which would be alright if I wasn’t basically a quadriplegic! The problem being the distinct possibility of developing bed sores and the complications that accompany them. One major difference between ALS and quadriplegia is that with ALS I retain my sense of feeling. So I wake up in tremendous pain every time the blood supply is cut off to my skin. I would start out on my back and within a couple of hours I would be in a lot of pain and I would need to be turned onto my side. This would happen many times a night. By the third night Deanna was showing the strain of waking up multiple times a night so I contacted the company that my insurance rents the bed from and asked if I could rent an air mattress from them. They said they would be happy to for $200.00 per month but they suggested that I wait for the appeal that my Neurologist had sent to the insurance company first before I did. I decided I would sleep in my wheelchair for a few nights. How bad could it be? It reclines to a flat position after all!
Fast forward to one month later, I was exhausted and my fuse had grown quite short when I received a call that my appeal had been denied. The person I was talking with worked for the company that rents the bed, had not been very much help during the entire process. They asked if I wanted to still rent the air mattress? I snapped that “I might as well buy one since it's so expensive to rent!” I figure I've got a few more years left and renting would cost more in the long run. So they say"We also sell the mattress." “You do? For how much?” “$800.00!” They chirp excitedly. “ $800.00 WTF!” I think to myself. “800.00 and it rents for $200.00 per month?" I asked, "I know crazy, huh?" they replied. "Why am I just hearing this now? You know I've been sleeping in my wheelchair all this time!” "You didn't ask!" they state. “Whatever!” I think. So I tell them "Send me a quote and the specifications"' which, by the way, took three calls from me to get. Long story short Dee found it on Amazon for $350.00. Oops! No commission for them.
So all of that combined with the sluggishness of my muscles brought on by the cold weather made for some miserable days. I had slipped, unknowingly, into the deepest despair I can ever recall. Though it is nothing like the depression that I have heard other people speak of, it was the worst funk I've ever been in. It all came to a boil on Christmas Eve when I blew up at Dee and Alex for some stupid reason that I can't even recall. At that point, I realized that I was in the depth of despair but I wasn't able to figure out a way out of it. It wasn't like I was keeping all of these setbacks to myself. I was telling anyone who would listen about it but that didn't help me any. It worsened a few days later when I overheard Dee telling a friend at a party that I was really having a hard time with all these changes. It was the next thing she said that stopped me in my tracks, "His personality has begun to change!" My heart sank and I was terrified at the thought that my best friend of thirty plus years was being affected by changes that I couldn't seem to control. Later, when I asked her about it she confirmed it but said she wasn't very worried since it was due to things that could be fixed. Those were welcome words to say the least and I think they started me down the path of breaking free of this despair,
Less than a week later, Dee was tucking me into my bed and I was feeling extremely sad. Noticing this she asked "What's on your mind?" "I'm feeling very sad about the thought of you growing old without me!" Then I began to tear up as did she. "I know it is a waste of time and energy to think about stuff I can't control but I just can't help it." I say as she sits on the edge of my bed, wraps her arms around me, lays her head on mine and begins to cry with me. After a moment she says "You can't always maintain all that being in the moment shit! Sometimes you have to think about the unpleasant realities of what is coming!" There she is, my anchor to reality. We cried a bit longer and then I felt it. A wet, hot, tap followed by a crawling sensation as one of her tears splashed onto my forehead and then ran down into my eye, mingling with my own tears. At that moment everything from the recent months hit me like a sledge hammer and the most intense, gut wrenching crying began. You know the kind where you don't make a sound for a minute and then nothing but sobbing follows? All the little unfairness that we have been dealt over the past few months came to me at that very moment and poured out onto my cheeks and were wiped away by Dee's tender caress, never to trouble me again. Things began to improve after that night. I wrote the following poem below the next morning:
I am reminded of a saying "One must let their heart break. Only when the most innocent part of you suffers can there be change. Or else nothing shall remain of you!" ALS, without fail, has broken my heart on multiple occasions. What I take away from this is that no matter how bad my condition is today it will be a bit worse tomorrow. Tomorrow will be better than the next day and definitely better than this time next year which will be better than one year after that! So I don't mourn my yesterdays I just try to learn from them. Nor do I fear or dread my tomorrows since I just might see and learn something precious!