Life at Fuppylessville is for the most part dull yet it is never boring. Over the course of time, we have chosen the former as our lifestyle of choice, in large part due to the unpredictability of the adventures that happen to roll our way at any given time. The dullness helps to uncomplicate our life, which in turn allows us to be better prepared for the next adventure that typically comes our way. These adventures are most often similar but never the same. This dull approach has worked well for near 35 years. It is who we are and will likely remain.
Much has happened over the last month and a half that has seen us celebrate Christmas, New Years and Paula’s birthday frequenting medical facilities at home and away all the while doing our damndest to maintain some form of dullness. Dullability is not something that can be taught, since no two situations are the same. It is a acquired through a committed persistence that only reveals itself upon backwards reflection on the passing of time. As I sit here writing this, I am content with our current state of mastery of the art of being dull.
As luck would have it, we received notice the day before my birthday that Adam needed to be at Cardinal Hill the following day to begin an extended stay for what we have termed “boot camp”. Yet another adventure coming our way but in this case one that we have been working towards for well over a year. The punctuation of the day, provided by the timing of the news, caused only a hint of a wrinkle in our bubble of dullness. Good news is not as disruptive as bad, and it was nice to be put on full alert for something that brought its own sense of excitement.
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Cerebral palsy (CP) is relentless in its impact. Those afflicted come in all shapes and sizes and each case varies in extremes. They are guaranteed nothing other than the persistence of challenges anew. Tomorrow is rarely better than yesterday and the tomorrow after that brings more of the same. Though CP is technically not progressive, the toll it exacts is. We learned this all too easy following each growth spurt with Adam, where the adjustment to his body served as a vehicle to erase previous gains. Actions already taken could not be reversed and in hindsight, many were a mistake.
My experience and understanding of CP tell me that Adam’s CP falls nearer to the middle than to the extremes. He is fortunate in that sense and even more fortunate that the pump that has been placed inside of him can provide medicine intrathecally allowing his upper extremities to benefit from a loosening of sorts. This decrease in spasticity is what allows him to perform many tasks and play the harmonica and keyboard as well as he does. Unfortunately, there is only so much that this medical marvel can do. The positive impact it can provide at this time is finite and its long term limits are conditional to the wear and tear that CP has on his body. Everything is inextricably linked.
Of course, Adam is fully aware of all of this and more. Often, too often actually, folks see the chair and come to conclusions born from a lack of understanding. An ignorance I suppose, but I mean this not in a mean spirited way. They simply do not know. Adam is very intelligent, personable, quirky, silly-funny and is engageable in a variety of ways. This is not a secret and anyone who has taking the time to get to know Adam most often comes away with the same opinion. There are any numbers of levels on which to interact with Adam, each rewarding in its own manner. However, even those outside of the family that know him the best don’t see the side that emerges when he is engaged with those professionals best trained to understand his circumstances. It is in these moments when my respect for what he must overcome daily reaches its peak.
The independence that Adam fights for daily, a fight that will soon reach its 38th birthday, took a significant hit a few years ago. This was during the time of Covid and in between this, that and the other things happening all over during that time, procedures were performed that were aimed at improving the damage that CP, and the required adjustments to combat it, had wrought over the years. For a year and a half, he was in and out of hospitals, fighting what was hoped to be the good fight but in the end left him with less than which he had begun. A problematic left leg was reduced to nothing more than an attachment that in its now useless state, created an even more daunting obstacle than before. Such is how it goes and this setback continues to take its toll.
From my perspective, there is nothing more sobering than being an observer as Adam, in a matter of fact manner, inquires of the doctor if amputation is an option or outlines in depth his reflections on his surprise that he remains among us. Adam has accomplished much and has had moments that can be only described as amazing, yet it is in these moments, when he engages with those with the most likelihood of producing a more positive life, that I feel most proud of him. It is in these moments when I see him at his best yet 9 out of 10 times when we leave that room a switch is flipped, and he and I are either arguing about something or engaging in a comedic routine that most often entertains us more than any observer. Inside jokes at their finest as we tend to reference and speak of things that only he and I possess a total and familiar commonality.
In this day, people search for heroes from all walks of life but chief among these seem to be sports, entertainment or political figures. I have had my share of these but the heroes that endure, have most often come in two forms – Someone much older than me or someone much younger. In the case of the former, most are gone now, but they at one time provided a clearness of direction and conviction that I carry to this day or that shaped me for the better. As to the latter, I find joy in the unadulterated inspiration that can only be provided by the innocence and promise found in a child; an innocence and promise that provide the hope for a dream to be realized in a distant time. I am truly fortunate that the hero who has impacted me most has a back door fifty feet from mine. In his case, I have witnessed the qualities I seek in the younger folk evolve into those I seek in those older and though Adam is much younger than me, he possesses a wisdom about life that far surpasses mine. I am grateful for his being and what it has gifted me through the years.
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Adam’s vacation at Cardinal Hill is expected to last 10-14 days. He will be examined and evaluated by trained professionals who deal with multiple forms of rehabilitation daily. We are hopeful that the occupational and physical therapy evaluations provide the most insight to the journey ahead. I am more positive about this stay than is Adam, but my basis is one of hope for a life unlived whereas his is anchored not as much in hope but instead in the knowledge that there is only so much that can be achieved. Either way we will know more than we do now.
Adam has spent multiple hundreds of days in a medical facility for one thing or the other. This will be the first time that the entirety of his stay will be without a constant presence of either myself or Paula. This comes with mixed feelings, but we know he is in good hands. Besides, once he gets into the routine of being himself, those around him will come to appreciate and gravitate towards him, as most have done throughout his life.
He has already gotten into trouble with Dr. Salles for ignoring the “Call Don’t Fall” sign that is displayed on the ceiling above his bed. He is used to doing things on his own and without thinking, he went about his routine which resulted in a fall in the bathroom. Dr. Salles was not pleased and given that she appears to run a tight ship, I am confident that Adam will toe the line to avoid her wrath. She warned him as much when she told him it better not happen again.
It isn’t as bad a gig as most of his previous hospital stays. The accommodations are better than most hotels and with harmonicas in toll and 31 days of Oscar playing on TCM he will be content. However, if you find your self on Versailles Road with time on your hands and could benefit from a respite from all that is wrong in the world, you can find him in room 113 just off the Section 3 entrance.
Feel the Burg 