What is Normal, Anyway?: Of Carpenter’s Squares and Cyanobacteria and the Way

Things change so fast. We try to return to what we once knew, in our bodies, only to find that the body refuses these reversions, these revisions, choosing instead to carry on with its daily confrontation with normality. Here’s what I’ve been thinking about, been trying to process: The changes we face, sometimes moment to moment, seek to be normalized as quickly as possible, all while refusing to accept that there is anything normal about this. We are forced to normalize the abnormal. But what is normal, anyway?

A couple of weeks ago, David had a series of Botox shots in his arms and shoulders with the hope that they would release the tension – the spasticity – that was making his limbs rigid, wooden; return to him some degree of range of motion. Months ago, when lifting him from bed or a chair, I would lovingly call him “Tin Man.” As in, with the gesture of squeezing an oil can, I would oil his joints, letting him move again with his familiar gait. I haven’t used that phrase in some time now, because with tin, you still have some semblance of pliancy. But now, David is more like wood, rigid with this sticky, gluesome disease. It’s strange, actually uncanny, how when I stop to consider this wooden quality, I turn my focus to the left where I can see our woods, the alders and conifers swaying in the late-winter breeze. Our wood is fluid, always in motion. This morning, as I stepped outside, I heard what sounded like a large beast moving among the trees. I just happened to turn in time to see a great branch crack like lightening, and fall to the earth with a great crash. That branch, it seems, had lost it’s sense of the fluid, its fibrous body drying out, no longer able to hold our ever-present Pacific Northwest water. I stood for a moment in surprise, and then sadness, and then resolve. Firewood, I thought. Let the crackling continue, I thought. And then I went inside and told David about the great fallen branch.

When I think about the term “abnormal,” I think of something against nature. And sure enough, when I visit its etymology, as I’m fond of doing, I see it easily – there it is, right there in black and white: “nature”. To be abnormal is to be “against nature.” Entries for “normal”, on the other hand, don’t mention nature at all. In fact, they mention images that to my mind and eye, are very much unnatural in the ecological sense. Go ahead and try to find the right angle of the carpenter’s square (the very root of the Latin, norma, normalis) in the twisting, curving, spiraling nature of . . . well, nature. Yet etymologically, that space where our words’ most openly secret meanings haunt the edges of our conscious, spoken language, normal is akin to the linear, the rigidity of the right angle. In this rightness, however, I’ve found only wrongness.

Is disease natural, or is it an artifact of aberration? Let’s look at the root cause (presumably, of course, according to the government) of David’s ALS. In fact, in cases like David’s, this is pure speculation. For others, like those suffering from familial ALS, the cause is easily traced to a mutation of gene C9orf72. Think about this for a moment: What we often view as the deepest structures of nature, those embracing, intertwining, waltzing helixes found in all of life mutating to bring on what is experienced as abnormal – against nature. For David, and others like him, ALS isn’t traced to gene mutation. In some studies, it’s thought to be triggered by a group of bio-environmental toxins called cyanobacteria. This bacteria occurs naturally throughout the world, and in some forms, we know it as blue-green algae. Further and interestingly, it’s the only bacteria that gathers energy by photosynthesis. What could be more natural than that, right? Wrong. Because for David, it’s not just natural: it’s also cultural, and deeply, deeply eco-psychological.

Natural because cyanobacteria is one of the oldest life forms on the planet. Cultural – and I hesitate to get into this because this simple blog post would be in danger of becoming a book, and I know I would circumambulate around a topic inspiring oftentimes heated argument, both for and against – because in David’s case, ALS was made manifest in the gesture and theater of the Gulf War, near to and fought upon the lands where cyanobacteria thrives. And it is eco-psychological because, at bottom, we cannot avoid the question of how war impacts the human and ecological psyche, and therefore the human and ecological body.

If “normal” is natural, and “abnormal” against nature, where do we fit in terms of ALS at the very least, and at the very most, with the ways in which we are tasked with normalizing each and every symptom and experience? To refuse normalizing, to keep our experiences in terms of the “abnormal,” we risk on the one hand suppressing the emotions that are present in every hour of care and endurance, and on the other, we risk fetishizing suffering into some misplaced ideology and iconography of hero worship. Is there then a third space between what is natural and supposedly normal, and unnatural and abnormal? This is what I think we are entering here, this third space, from the degree of assault from ALS. And in the coming months, I believe it’s this by which we’re going to become ever more deeply impacted. We’ll see.

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If you’ve stuck with this post, I thank you. Because writing it here has set me on a path towards perhaps being better able to befriend this ongoing grief that is pervasive, alienesque, sometimes dissociative, and yet the most tender and subtle of presences.

Leaving aside the sharing of my personal vulnerability, let me turn to the care and feeding, not of Tin Man, but my Green Man; that most natural of beings, David.

As I said above, David received several shots of Botox (basically another toxic bacterium). They certainly released a lot of tension in his arms and shoulders, but in truth, we’ve not been altogether disciplined in the painful stretching that should be done with ritualistic fervor. David is sleeping more now, and because of the energy spent in ADLs, I’m more inclined to let him rest. We stretch whenever he has to get up to pee, shower, go to bed, etc. Some times he’s quite loose and I can feel the energy when I lift him up. Other times, he’s as heavy as a log and I know his fatigue outweighs his desire to be active. The shots will be repeated every 3-4 months. Actually, it was really interesting, watching the injections. His neurologist, Dr. Page, was happy to let me film. If you turn your volume up, you’ll hear the sounds David’s muscles are making with the objective being to move the needle where they’re in full chorus.

We also received his new Shower/Commode Chair. Although because of the remodel, it doesn’t necessarily make the games easier getting on and off the proverbial throne (and it is, indeed, a Game of Thrones!), it and our newly remodeled shower make for keeping him smelling like his sweet self. It’s kind of a behemoth of a thing, but I’m grateful none the less. Before its arrival, I’d pulled a muscle in my back trying to keep him clean, so it came just in the nick of time.

As for the Home Health Aid, a.k.a. that ghostly Helper that we keep hearing about, she arrived, promptly letting us know that she was 25 weeks pregnant, and under doctor’s orders to not lift over 40 lbs. Um . . . okay. She was very sweet and had she not been pregnant, I felt would be a great help in getting David in and out of any of the 7-8 stations of support we now have. But I have to say, it was a pivotal moment for me in terms of stating clearly my and our needs. In the vein of not wanting to hurt her feelings, or become a bother for anyone, I would have, in the past, acquiesced and made due. Not. Anymore. I’ve somehow shifted into not stressing if I disappoint someone by not fulfilling their expectations. David is more important than someone else’s ego, and so she arrived and then she left and that was okay.

In conclusion, folks, I struggle with how upfront I should be within the scope of this blog. In truth, our world has become very small, really existing within the walls of our home, expanded only when we go to the VA for various therapy appointments. We so enjoy when people visit, even if it’s just Art, the rep for David’s ventilator, or Emily, our rep for Tobii (We LOVE Emily – she’s so awesome!). But we love more when Temple comes for a visit. It’s a time when they can sit and watch their dude-flicks and I can retreat into my office knowing David’s in good hands. And in a short time, we’ll enjoy another fantastic visit from Valerie and Lola, and when they go home it will be too soon and I’ll be unapologetically sad. I say this because I really don’t know how much time I and we will have with David. It could be many months, years even, or it may not be many months at all. We just don’t know. I know it’s closer than it was last year when we began this blog. I know it’s closer by the almost invisible signs of our conversations shifting into more deeper subjects. The tears David cries are changing, as are mine. The fact that we’ve now seen an attorney and have both put our “affairs” in order is another sign. We’re not hiding from the fact that ALS is terminal, but I admit to having not wanted to talk about that aspect, or use the words associated with that event. In many ways, I still can’t. So nothing about this will ever be or become normal, or natural. There are times when I literally cannot believe this is happening, and I have this internal cri de coeur, this silently deafening scream that will forever remind me that I know intimately Rilke and his angels.

In a particularly brutal meltdown, I asked David, – because he’s my best friend and I’m used to turning to him for advice – “What would you do if you were me?” In his stoicism, he duly turned to Tobii, his communicator, and typed, “I would wait 2 or 3 months, rent out the house – let someone else pay the mortgage, Gabrielle – then, take me with you and go walk the Camino. Then go to France or Spain for a year and just write.” If I could imagine crying so hard that I thought I saw my soul in the tears on the hardwood floor, then I did just that. I sat there the rest of the day, thinking about the first time I watched the film, The Way. In it, Martin Sheen takes the ashes of his son who died on his first day walking the Camino de Santiago. Along the way, Sheen left bits of Daniel, his son, becoming then forever a part of that great pilgrimage path. David’s words, “take me with you”: . . . . Is this what he was saying?

I’ve walked the Camino before and I’ve watched that film more times than I want to admit, never once thinking I may ever live it. Last summer, David and I watched a documentary of two best friends, one of whom had become confined to a wheelchair, now a paraplegic. His friend pushed that chair through mud, rain and snow, from St. Jean Pied-de-Port to Santiago de Compostela. Angels arrived in so many guises to help along the way, particularly in spots where it seemed hope had been lost. But they succeeded! I recall that I turned to David and said, “Let’s do it. Let’s walk the Camino. I will push you!!!” And I meant it. I meant it more than I’ve ever meant anything else. But ALS demands something else. It demands giving up some dreams; awakening to others. My intent in sharing this isn’t to upset anyone, or proclaim his imminent demise. He’s right here, next to me. He’s sleeping, but he’s here and breathing. And . . . right now, David is already walking his own Camino. Maybe not to Santiago, but he’s certainly moving through all of the landscapes of an archetypal journey. And I’m right here as well, walking next to him. And that is the most normal, the most natural place to be.