Caregiving Coalition Arizona

Ruminations on Dying

A good place to start might be in getting a few clichés stated and behind us. The two that come most quickly to mind are: “death and taxes are inevitable” and “we are all born to die.” For sure, these two classic clichés comprehend more than sufficient inspiration to sit down with a friend on the beach under a shady umbrella and consume a sizable, chilled pitcher of margaritas made with fine aged tequila. As I see it, the trouble is that too many of us take too long in figuring this out; otherwise we’d start much sooner seeking cool, comfortable places to relax and appreciate first-rate solidarity and spirits with our friends.

There’s birth and death and life in between. That “life” in between varies all over the map. For some it’s very long, sometimes too long, and for others it is very short and can be far too brief. For a big chunk of us who die somewhere between 65 and 85 our lifespan is what it is. Regardless the length of our lives, what really matters is the nature of the combustibles that consumed that life. Did I just utter another cliché? Forgive me if I did and have a first-class Margarita, Mai Tai, Mojito or single malt on me. But, yes good friends, what counts is how we live that life of ours because sooner or later we’re going to realize that we are on the downward slope and quite briskly nearing the finish line.

Permit me to share with you the here and now perspective of my life, a 75-year-old who happened to contract juvenile rheumatoid arthritis or JRA, but now referred to as juvenile idiopathic arthritis or JIA, at the age of 2. Whether referred to as JRA or JIA, the illness is of unknown origin and is considered an autoimmune, inflammatory illness. Since I contracted JRA – what it was then called in 1943 – and when the lifespan of the average  American male was 63, my parents were told by my doctors that I probably wouldn’t make it beyond the age of 3. It is quite mind-boggling considering I’m still here at 75. In fact, although for the great majority of my life I could only get around with a power wheelchair and was dependent on the assistance of others to bathe, dress and care for my personal needs, the realization that the downward slope was catching up to me didn’t start to sink into my brain until I was about 65.

Yes boys and girls, it’s taken me far too long to learn many things in life, including the reality that I could die tomorrow, or even two hours from now. However, they do say that one should live about 3 years longer than your longest living parent, which should mean that I will die around age 89. That’s ridiculous unless you factor in all the years I’ve lived as a Crip which should knock off a good 10%, bringing my age span down to a more realistic 79, max 80. So I’ve got about another 4 to 5 years to savor life, make plenty of more screw ups and otherwise learning lessons to the very end.

So, this is how it is ladies and gents when someone like me, with a steadily debilitating illness gets involved and wrapped up with the “aging process” not such copacetic stuff starts happening at a faster and faster clip. It’s like being on the super-long, progressively downward slope of one mighty large roller coaster: as you head toward the finishing line you realize the speed is increasing, but there’s not a whole lot you can do about it, or may even want to. About 12 years ago, roughly 2004, I could still drive my own wheelchair accessible van, chop up my steak with a knife and fork, unzip my pants and hold my dingdong with one hand and urinate into a urinal held by my other hand. I could still hold and write with a pen. And I could still hold onto an artist’s paint brush and do some, but not much, painting. I also managed to take a couple of swims in our pool that summer.

That’s not to say that stuff had not been happening to yours truly prior to or during that year because they had. I noticed, primarily, that my overall strength of grasp was slowly diminishing. Not very friendly, I must say. Then, over the next 4 to 5 years I lost sufficient hand grab strength to no longer be able to cut my own steaks or chops. I’d have to ask Daniela, or whoever was with me, to do the cutting for me. It was definitely an ego depressor, but I ended up rationalizing the plus side of having my meat ready-to-eat in less time and therefore hotter which is the way I prefer to enjoy a good steak. But over these same years, I came to realize that I couldn’t unzip my pants and urinate independently. The solution to that problem was that I started wearing an external condom catheter connected to a urine collection bag strapped to the side of my leg which had to be emptied every 4 or 5 hours.

On several occasions when I had to stay late at the office, I noticed that my urine bag was full to the brim. Believe it or not, I couldn’t get a Capitol guard to assist me in emptying it even though not one drop of urine would’ve ever touched their hands. Their stated reason was that they didn’t have permission to do this. Maybe I am confused, but since when does one guy need permission to help another guy out? A couple of years later, around 2008, following the microvascular decompression surgery I had to treat the level 10 lightening pain I was experiencing from the trigeminal neuralgia in my right jaw, I found that I could no longer safely drive my wheelchair accessible van. I sold the 14-year-old bucket of bolts and purchased an almost new 2008 Toyota Sienna Accessible Minivan that Daniela could use full-time and when we needed to go somewhere together.

Meanwhile, to get back and forth to work, I used Dial-a-Ride which was tolerably serviceable. The pluses and minuses of Dial-a-Ride became relatively superfluous on June 30, 2008, when the administration in the governor’s office determined that drastic cutbacks were needed to save the ship of state. So the decision was made to permanently close the Arizona Office for Americans with Disabilities and my job as its Executive Director went poof in the process. Even though 80% of our funding came from a federal block grant, not Arizona taxpayers, it was felt by the greater powers that the federal block grant money could be used for better purposes than making sure that the State of Arizona complied with the ADA and other disability-related laws pertaining to education, transportation, and housing. As a Spaniard is inclined to say, when caca happens, “Asì es la Vida.” Such is life, my friend, such is life.

Around this time in 2008, I began noticing some curvature to my spine, principally scoliosis on the right side but some forward leaning kyphosis as well. Guess what happened next? Well, over the period of some months, there developed minimal pressure wounds, requiring treatment with appropriate creams and dressings. And as the scoliosis and kyphosis intensified, so did the pressure wounds, from stages I and II from 2008 through late 2011 when stage III started to manifest. Coincidentally, it was also the mid-2000s when I lost sufficient grasp in my right hand to be able to hold onto a pen and write. Have no fear; I could still firmly hold a fork and spoon in my left hand to feed myself. Hooray!

Several Wound Clinics were consulted, and I finally settled on Banner University Medical Center Wound Clinic in Downtown Phoenix. When 2013 rolled around my stage III decubitus ulcers and evolved into full-blown stage IVs. This is where holes in the flesh develop and you can see straight down to the bone. My scoliosis and kyphosis had become progressively worse over this arch of time, and so had the uneven pressure on these 2 decubitus ulcers. About the only option open was to surgically close these decubitus ulcers. It’s a surgery which usually requires 2 or 3 procedures and postoperative hospitalization in a specialized acute-care facility for 6 to 8 weeks. These acute-care facilities have access to, among other things, a special sand bed which regularly undulates to provide continuously shifting pressure relief to your bottom side, facilitating the healing process.

While still planning for all this surgery stuff and getting clearance by my primary care physician, cardiologist and pulmonologist, I began to have to suddenly deal with other little goodies starting in the first part of 2016. One morning I sat down for breakfast and voilà I wasn’t able to pick up and grasp the fork with my left hand regardless of how hard I tried doing so. Fortunately, an occupational therapist had given me several months prior a strap gizmo if and when the weakening of my left hand gotten out of hand. Anyway, not so dry humor aside, this clever little gizmo is nothing more than an elastic strap that fits over the hand with a leather strap at the bottom side of the hand that contains a pocket to insert the handle of your fork or spoon. The bummer part of using the hand strap gizmo is that I need assistance putting it on my hand and inserting the fork or spoon handle in the pocket.

The good news, at least for now, is that I found a plastic safety razor with a fairly long and plump handle that I can still grasp with my hand for shaving my adorable face. Of course, the safety razor is made in China. The other splendid news is that with two hands I can still pick up a cocktail glass to savor the occasional vodka on the rocks or scotch or tequila neat. Maybe I should focus less on eating and more on drinking! Around the time that eating with a fork or spoon required the strap gizmo, I discovered one morning that I could no longer arch my back and lift my buttocks up sufficiently to create about an inch or two clear space above my wheelchair seat cushion. Quite suddenly my knees and quads had weakened to where lifting my buttocks wasn’t doable, no matter how much effort I put into it. This exercise I used to do several times daily to help prevent my stage III decubitus ulcers developing into full-blown stage IVs.

All this stuff occurring at about the same time was rather scary, but pissed me off, too. I decided that being pissed off is better because it tells yourself and anyone else who may be listening, including the up in the sky commander-in-chief, that I’m still not ready to buy the new farm yet. And just as I was settling down to this new reality of my life, I was awakened by sporadic, but reoccurring spasms in my right leg and spine. The spasms occurred especially when I would hit a bump driving my wheelchair or when retracting my wheelchair’s feet rest. The spasms can occur, too, when I or someone else touches my leg or certain parts of my body. They can even happen when I’m just sitting and talking with someone. There’s other smelly and nasty junk I could add to the list of newly occurring pains in the ass, but I think I’ll leave same to everyone’s innate creative imagination to divine what’s up, Doc?

Well, do all these delightfully occurring monthly, or even weekly, surprises signal I’m dying? Yes, friends, family, colleagues and people who don’t like me so much, I am on the faster slope of dying, but I just don’t know when. Right now, as I write this, I feel pretty damn good with no real reason to believe that I won’t be around for another four or five years. For sure, if surprises keep happening I’ll most likely be eating less and drinking more. Salud!

By Ken Jacuzzi 4 August 2016

Posted in Caregivers, Stories.