Trials, Tribulations, and . . . Howie

How is David doing?

It’s now been a year since this disease first showed itself. Back then we thought it was merely allergies, or worse, a mini stroke. Either would have been better.

Because I’m not here to sugar coat reality, here’s how he’s been doing, brutally and succinctly. He has ever-greater difficulty walking and moving about, but there is a bright side (which I’ll return to). His voice has left him near unintelligible to those who aren’t accustomed to hearing him speak. The disease produces more saliva than his dysphagia can keep up with, leaving him drooling a lot. However, the dysphagia has actually improved a bit all because he’s healed from the surgery wherein his vocal cords and esophagus were treated like unravelling strands of yarn. His facial structure is changing, his eyes appearing more open, making him look younger than his 52 years. Sometimes he looks as though he’s seeing things some of us only slightly perceive, but it also causes people to misinterpret the quality of his unaffected intelligence. I’ve taken to referencing his PhD more than I’ve ever referenced my own. His laugh is infectious, full-bodied, and loud! LOL!!!!

He tires easily and I’ve had to really work at easing his idea that a nap is a bad thing. He still laughs a lot, but he cries a lot as well, his frustration over trying so hard to communicate being overwhelming at times. For the most part, I’ve taken over bathing him. It’s not that he can’t, it’s more that it’s really tiring and his body just can’t move in all the ways we take movement for granted. The disease changes the collagen production in the skin, and so it’s important to keep his hair and face clean as the oils cause his eyes to sting. If you ever really want to learn the quality and depth of your relationship with your SO, bathe them when they can’t do it for themselves. If you ever want to learn what you’re capable of, care for someone who has no choice but to place themselves and their dignity in your hands. You will learn what you are made of. If nothing else, he or she must remain human, maintain their agency.

I know I mentioned drug trials in my first post. Here’s what I can tell you about that. In May, David was viable for two trials: one for Oral Edaravone (aka, Radicava, a drug traditionally administered by infusion having been shown to slow progression), and the Healey Platform (a platform of 5 drugs randomly assigned with varying results). David decided to go for the Oral Edaravone because the screening was to begin in June. To qualify for this, the patient could not have taken Edaravone/Radicava by infusion and to have shown a specific percentage of pulmonary function. David took the test, yet it was administered using faulty equipment, resulting in a low number putting him towards the lower end of likely acceptance. He took it again and showed some improvement, but again, the equipment wasn’t appropriate for an ALS patient. In the meantime, the screening for the Oral Edaravone was postponed until late June. We waited, but with time moving fast and David showing certain losses, we began to consider the infusion (which would eliminate him from the trial for the oral version altogether). I received word last week that the screening has been yet again postponed with no new anticipated launch date. This news completely eliminated him from that trial because we can’t sit around wasting time as the disease progresses. So he decided to go for the infusion. Now I’m waiting for that to be set up. This will likely occur during comprehensive care, which is nothing other than throwing everything at him at the VA hospital in one fell swoop. This will likely include the infusion (if he still qualifies in terms of his pulmonary function), and the insertion of a feeding tube. Before anyone panics . . . this is prophylactic! It’s imperative that he keep up his weight and the feeding tube is for supplementary use should he need it. They insert it now because the patient’s pulmonary function must be within a certain range (that don’t want to intubate anyone!). If he’s having a bad day in terms of the dysphagia, he can rely on the tube for calories. Otherwise, he can go on eating whatever he likes for as long as he’s able. In tandem with this, he’s decided to go with the Healey Platform as well, as he qualifies for that without question. That screening will happen within this month. The only caveat is that he must have been on the infusion of Edaravone/Radicava for at least one cycle/30 days. So you can see how this is an intense juggling of many balls and their timing of descent into hands that have no choice but to catch them.  

In terms of administration, David was rewarded a 100% disability rating from the VA, making his support and care virtually without monetary cost – but oh what a cost there is. His walker arrived from the VA two weeks ago which has done a world of good. David named it Howie (Hell on Wheels), and with Howie’s support, he zooms around more confidently, which means exercise, which means maintaining strength. Howie has stickers. And a cup holder. And what I call a kangaroo pouch. Yeah, Howie’s a dude, but he still has a pouch because he wants to help. It’s in his nature. You think we’re weird, don’t you. We are. (Animating objects is really the best form of therapy, but that’s for another time.) Also because of the VA, David qualified for a sizable house grant, which means we have a contractor visiting next week to assess what can and can’t be done to modify our home to accommodate David’s needs. There will be deconstruction and construction, and I’ll have tons to say about that later. Here’s . . . .Howie!

David is still working for Amazon, and in fact, doing as well as ever. His boss, both compassionate and encouraging, gave David a project that would put him in line for a promotion – a goal that would be great for him to achieve before having to retire.

A bright and shining moment was a visit from David’s dear friend, Wylie. I’d not met Wylie before – had only heard the stories. All I can say is that I love this man! His visit was a joy and we both wept when he departed. His compassion and open-heartedness was a priceless gift for which I can’t ever be more grateful. And Wylie . . . I lifted that grass and spread the mulch! Back for more today!

How I’m Doing

Now for undercurrents. I’ve been thinking a lot about the VA and the military. While knowing that many of David’s friends have strong alliances and allegiance to that establishment, I’m not of the same mind. Yesterday, I was in a reverie about the Gulf War, Kuwaiti sand, and so-called patriotism . . . all of which speak to the greater work David is doing, i.e. Moral Injury. I found myself wondering over a hypothetical question that, in my imagination, might be posed to any man or woman stepping foot into a recruiting office. It might go something like this:

Well we sure do appreciate the service you’re about to do for your country, but certain protocols require us to ask this question before we have you sign on the dotted line here. Now you’ll be protecting your fellow citizens’ rights to drive inefficient vehicles because the economics of clean, affordable, electric cars don’t align with our boys in Texas and the Dakotas. You’ll be protecting those gents, keeping their millions coming in because, son, they pay our wages. In order to keep protecting those rights, you going to sandyland made up of billions of microscopic granulated toxins (though we’ll say we’re only speculating) that you will breathe in. You’re a soldier now – and soldiers don’t wear gas masks to breathe the clean air of black gold, now do they?! These toxins, son, will sit in the corners of your brain for years, but they will eventually emerge. And when they do, you’ll fight the good fight as you lose strength (we don’t use the word “weak” around here), you’ll drool, you’ll have a feeding tube, you’ll lose bodily autonomy until you’re confined to an electric wheel chair (no, no gas-powered chairs I’m afraid) generously supplied by the VA, that most honorable institution. This will, once a soldier always a soldier, lead to your too-early death by pneumonia or asphyxiation. Now the good thing is that it won’t affect your mind, no sir son. You’ll still be able to see it all . . . with full honors and benefits! Do you agree to give your body and life and dreams and imagination to a war-for-oil God-country-unit that will increase your likelihood of getting this disease by, as has been reported, 60%? Yes? That’s good; that’s very good. Now sign here!

            I’m aware that this is a naïve and biased bit of story-telling. I know all the other justifications for war, have heard all the defenses for that sub-culture. I know there are probably many of you who disagree with my none-too-subtle blasphemy of this country’s first line of defense. I’m anti-war, anti-gun, anti-violence, anti-patriotism as it’s been recently redefined. I don’t really give a damn if I’m an insult to that patriotism. I’m angry, and righteously so. But here’s the thing. David made the decision to participate in that theater long before I met him. He’s not the man now that he was then. But I’m supposed to be grateful to the VA for the support they promise and throw at us “like candy” (as they like to say as often as they can), yet move as if time is not of the absolute essence. I’m supposed to feel grateful that we have more resources and support (not so much care) than those who are afflicted with ALS and are non-military (how do those people make it?!). I can’t say gratitude is what I feel. Gratitude comes from beneficence. The support of the VA and government is not beneficence; it’s non-equitable compensation; it’s a shadowed and tacit complicity.

            This isn’t the blog post I wanted to write. But honestly, I’ve been struggling with the place we named “Mason Bees”. It was named from love and joy, and I’m not feeling loving or joyful. I’ve sat here for weeks trying to write something uplifting while finally opening promised boxes shipped from the VA, full of increasingly significant tools of “support,” (like these here)

worrying that everyone will only want to read about the heroic emotions and actions we manifest while never disclosing the harsher realities and thoughts. This is a fucking ugly, ugly disease. It makes you conscious at every moment the ways in which your body and life must be sacrifice to a hidden criminal stealing what is, in plain English, a glue. (And the next post will be about glue, the chemical structure of ALS and how it’s related to the Anima Mundi, or World Soul. I know . . . lofty and perhaps deflective, but it’s on my mind anyway.) It brings you to a level of grief you’ only read about, once . . . maybe on a blog somewhere, written by someone who lost . . . something, or someone.

Perhaps this was a dire-sounding post. Undoubtedly there will be more of those. But let me finish on a better note. While we know there is no “beating” this disease, we have come to see one thing. If anyone can be one of those souls who lives “with” the disease, for longer than what doctors declare the average, it’s David. He has goals, he has problems to solve. In fact, he thrives on challenges and problem-solving. He has a book to complete, a blog post to contribute (Ahem!), and a trip to take (that’s for another post). In other words, he has a life to live; we have lives to live. I remain, as always, in awe of his tenacity, his optimism. He continues to model for me a kind of tender-hearted resiliency that I know I will need in the future. He is, in short, one of the most amazing creatures I’ve ever encountered. I laugh at the interpretations people have of him, because they don’t come close to the truth or depth of him. If anything is greater than the affect of this disease, without question, it’s all of what makes David himself.