It was a rager. Mary organized quite a party at our humble abode. Outdoor mood lighting was strung the day before. The tiki torches were filled, firewood assessed, candles bought, but this time, one for each year. Fire, fire was the theme. Oxygen, oxygen is what shows up at your house when you go on hospice. It comes in bottles, it comes by machines. A gruff looking guy shows up in a truck, hauls it in with the heft of a piano mover, says “flip this switch, crank that valve” and is gone as quick as he came. In reality though, we were safe on this issue as my breathing machine is able to pump enough good old seventy-eight percent nitrogen, twenty-one percent oxygen, throw in a little CO2 and argon, to keep me going in my rather hibernative state.
People came. They came with stories of the major mountain bike race earlier that day. They came with arguments as to who was most responsible for tipping my electric wheelchair over, exactly x number of years prior. In total, my family and friends are a rather eclectic hodgepodge, but all good people. We are all blessed.
It felt more like birthday month as the prestigious St. Louis Orienteering Club did a tribute to me at the annual Kirkwood Greentree Orienteering Meet, an event that I had put on for a number of decades. The new organizers did a wonderful job and the amphitheater felt rather full this year. I got to reconnect with Major Northcutt, who drives a bus full of Jr. ROTC kids all the way up from Arkansas most years.
They asked me if I wanted to give a little talk… Well, I talked about how my brother and I got into orienteering nearly forty years ago, his making the map that we were using and starting that annual event. I explained how the sport was invented in Sweden before the second World War as training for their soldiers in rapid and accurate land navigation. I pointed out the International Space Station going overhead and asked if everyone could see the astronauts waving. Luckily, the long shepherd’s hook hadn’t come out from behind the curtain yet so I was able to get some ‘thank-yous’ in and wrap it up.
Communication is the most difficult party challenge at this stage of living with ALS. Actually, it might be the most difficult challenge when there’s no party either. Public conversation has been out for a while, but a few people could still make things out, as long as it was very short, and in a pinch. I’m now just crossing the point where I can watch the gears whirling in Mary’s, or a caregiver’s head, but after a puff of steam coming out of her ears, it’s “I’m sorry, I just can’t get that”. I would not have guessed that the last tiny bit of extremely limited speech would be the most important. When one becomes more of a bystander in the world, the need to participate, make something outside of your brain happen, grows. My eye gaze computer allows communication of complex ideas, and is a life saver, figuratively, mentally, and perhaps literally. However, thoughts are so delayed that conversation for entertainment becomes tricky. To participate, I must type while others are talking. The rub is that one is saddled with the problems associated with multitasking. One can miss the nuance of others, if not their entire point altogether, and turn it in to a performative endeavor. That is its own take away. It’s also a sinking feeling when I add my exquisitely clever and funny quip to the flow of the conversation, at the impeccable timing of when that particular topic has gone completely stale and has been largely forgotten about, which then derails the current topic while carving out a big silent spot, where everyone looks at each other inquisitively. “Do you know what he’s talking about?” “No Bob, I haven’t a clue.”
I’ve never put too much stock in birthdays, other than being a good time to feel a little love from the humans close to you. If you are lucky, they come, drink your beer and feel obligated to say generally nice things about you, unless they drink too much of your beer, which might tip it either way. Since I had gotten my diagnosis on my birthday itself, however, it seemed inevitable that they would be milestones on assessing the situation.
Somewhere, perhaps birthday number one or two, I did some rather useless, yet seemingly unavoidable thinking about my mortality, they talk about a “bargaining phase”, but this was more like bad entertainment. I was doing something of a cost / benefit guessing game. If I could rid myself of this disease, not have to live the pathetic looking life of the more advanced people I saw at the ALS clinic and then be done, what would be the number of years into the future that I would choose as my trade off point? This is an interesting question in that, at the time, I was thinking perhaps two years? Definitely go with that option if three were magically offered. Well here we are, four or five years from that point in time. Now I can imagine some people leaning in at this point in the paragraph. “What did he say? What did he say?” What is my opinion of what was the best choice at that time? Well, I can’t say that hindsight is one hundred percent conclusive in this matter, but I’m glad I’m here. While I’m not saying that this is easy, or sounding a “Note Triumphant”, I am awfully glad I’m still here! For one, I don’t think about these kinds of things anymore, aside from writing this thought from the past. That is a good thing.
The first inklings: I had noticed race performance issues six-and-half years ago. While adventure racing, our team came off of a rather cold paddling section, to then run up a road to the race headquarters. It’s rather incredible how your body knows what parts of itself need the blood flow at different times, and then has the valving and pumping abilities to make that happen. Paddling a canoe in the cold for a long period of time is a great example of this. While your hard-working upper body may be toasty and warm, some little Dr. Suess character inside of you has pulled this lever and pushed that knob, in the most cantankerous way, causing your legs to be shunned and banished. Legs are not the complainy sort, however, so the antics of Thing One and Thing Two tend to go unnoticed, that is until you get out of the boat and wobble like a drunk sailor. It then becomes equally amazing as to how fast all the knobs and wheels get thrown back into their normal settings. Along with the quick sobering up, also comes the rush of very cold blood into the rest of your system. “Take that” your legs say. “Now you know what we’ve been dealing with.” We always wondered why we would get so desperately cold coming off of a paddling section. In this particular race in the late spring of 2016, the wobbling ‘drunk phase’ stayed with me the whole run back to headquarters. It was funny. We laughed. It’s still fun and funny at times. Stephen Hawking said, “Life would be tragic if it weren’t funny”.