This, Again

Let’s meander together down a road we’ve traveled many times before: Would I be better off if not for ALS? That’s not my usual angle or phrasing; you might be more comfortable with, “Who or where would I be if not for ALS?” But that’s only half the equation. It pays no attention to who I am now, who I’ve become, and in that (very significant) way, it’s incomplete. It’s bullshit. I like who I’ve become; I don’t want to ignore my reality and every (often difficult, painstaking) experience that led me here. I am who I am—very largely—because of the journey, not in spite of it.

It's been a long time—you know that. I’ve lived an unusual life for the past decade and a half. Somehow, I think, the brain normalizes its circumstances—finds equilibrium. It’s difficult—even for me—to see clearly the other side; to compare. But I try.

And, of course, there is no other side in the present. I have to go into the past and bring it forward. I have to try and see my alternate path and determine the true—pure, scientific—impact of an ALS diagnosis. It’s impossible.

Maybe the image in my rearview is not that different from yours. Maybe, in many ways, we all see ourselves change—hopefully, anyway. I’ll never be able to separate the “normal” maturation that comes with age and experience from the (fairly) unique set of circumstances I’ve experienced. Quite honestly, one of the dominant themes—maybe the dominant theme—in this thought experiment, this area of thinking, is this: I’m afraid of who I would be (if not for everything that has resulted from an ALS diagnosis.)

(Bluntly, I live with my parents and see, daily, my father’s behavior—at 70. Now, I had a very different childhood—a different life, altogether—than his, but I used to think I was a lot like him—certainly far more than my mom. He did obviously shape my image of a father; kids don’t know any different from what they see. The anxiety, criticism, narcissism, moodiness, lack of patience, and general ill-temper [that’s a lot!] I see now were all present as I [as we] grew up. I [we] thought they were normal; they were normal. More bluntly, I’m afraid, if not for ALS, I’d be a lot like him. Ugh.)

I was such a child. I see traits in other people that remind me of myself, how I used to be, used to act—it makes me sad. For myself—that I lived in such a cage—but also, perhaps even more powerfully, for others. People live in such fear, with such anxiety, it’s so limiting, controlling, and—often, it seems—impossible to see.

I had one session with a therapist after my diagnosis—it was part of the protocol. In the late summer or early fall of 2011, on a weekday, from my shared house in Stowe I drove to the Fletcher Allen Health Center (now University of Vermont Medical Center), parked in the garage, took an elevator to the lobby, traversed the new building down a long connecting hallway into the old, took another elevator, and found a small office in a drab and distinctly unrenovated hall of the psychology wing. (The sentence is long because the journey was long. I don’t actually remember the office location and building layout based on that visit; I’ve recreated it from more recent therapy sessions down the same hall. It’s also very possible, likely, that I took the stairs; I’m a stairs person.)

Dr. Schneiderman (not his real name) got very hung up on one question, one that I wouldn’t, or didn’t, answer to his satisfaction. It’s almost all I remember from our hour together. He asked if I was seeing anyone.

I was not. Why not? I don’t know. He wanted a real answer and kept at it. I was evasive. I spat out facts, but not reasons. I defended myself from attack.

I’d been on a few dates, met a few girls (at that time, I would have referred to twenty-something women as “girls”), but I’ve really been concentrating on my career; I had relationships in college—it’s only been a few years; it was much easier to meet people in college. Nothing is wrong; there’s nothing wrong with me, it’s just circumstance. Evasive. Bullshit.

The things that keep us from having the relationships are likewise the reason we can’t talk about it. Fear. Protect yourself—at all times—from friends and from enemies. Don’t let anyone in. Be an island—self-sufficient, never in need. Push feelings down; ignore them—until they almost disappear. Until you’re not even sure they exist.

It’s hard to see that in the rearview—half a person. A smart-ass, always; ready with a retort, to defend myself, tell you why you’re wrong. It took so much energy—maybe all of my energy. The walls were high and thick and impenetrable. I never asked questions—to anyone, about anything. I like this song; who is it? That’s a cool jacket; where did you get it? Can we go back? I’m not sure I understand. I never knew much about the general goings-on—the gossip—because I didn’t ask; I didn’t know how to ask. I couldn’t let down the façade, admit I didn’t already know. The result? I knew less, and felt isolated.

One day in American Studies (combination English and social studies, sophomore year), we had to write an in-class essay about the styles of dress of the South Burlington High School student—what kids wore. I was so embarrassed my skin was crawling. I didn’t know what everyone wore; it was a major sore spot for me. I was still shopping at Gap Kids—with my mom—praying each time that nobody saw me. I’d had to deflect questions (knowing questions; bullying questions) amongst “friends,” about my stylish little cargo pants. I didn’t know anything about kids’ clothes because I didn’t want anyone to know anything about mine.

I couldn’t allow it to be seen—and known—that I cared about anything at all. If you don’t care—if you’re not emotionally invested—you can’t get hurt. And I didn’t want to get hurt. But it’s a straight jacket; I was completely controlled by this fear. It prevented me from “putting myself out there,” i.e., trying, in so many areas. And that’s unfortunate—and regrettable.

It makes me sad. It just seems so unnecessary; I wish I could have recognized it, worked on it, confronted it. I wish I could have been more intentional. I wish I could have taken a step back, seen myself, my life, and my (non) choices—none of it would have held up under honest scrutiny.

I’m not sure I ever gave a compliment—in high school, into college, and even after. Maybe a few, like, sick guitar solo (I’m struggling to come up with even a second example, and that should speak volumes). But certainly—certainly—never anything meaningful. I had several girlfriends in high school; I’m genuinely not sure I ever paid any a compliment.

Some of those traits—the ones, it seems, that should be left in adolescence—are somewhat engrained in traditional masculinity. The Strong, Silent Type is an oxymoron—a lie. Keeping everything in, pushing down and ignoring your emotions, is fearful and weak. It’s the easy way, and like every easy way, it yields poor results. No one gets what they really want—things don't get better—by taking the easy way.

Maybe you’ve heard this before, from me—in my writing—or someone else. Maybe it’s unfair to judge an immature—i.e., unfinished, I suppose—young person by mature—and enlightened!—adult standards, in retrospect. Maybe it’s not unusual or surprising; maybe my classmates and friends felt the same; and maybe, some have seen similar maturations in themselves. But some don’t; some people—it seems obvious, to me—live their whole lives in that little box—don’t see it; don’t know it exists; can’t see another way.

I know where it came from, or, I have an idea. A certain portion, I think, was simple modeling—that’s how everyone (the men, the boys) was; at least, that’s what I saw. But more than that, I had a (somewhat typical, perhaps) very critical father, and grew up as the youngest and smallest in a group of always competitive, always on-guard boys. And then, at eighteen, I lost my brother, suddenly, shockingly, inexplicably; and before the year was out, in a raw, vulnerable, and otherworldly state, fell in love—hard, for the first time—and was crushed—crushed—when she ended things a handful of months later. While I think my persona—my way of being in the world—was well entrenched by then, it’s impossible to pretend those successive shocks didn’t have an impact. If I’d grown up with a fear of being hurt, I now knew—truly knew, to the extent that I actually allowed myself to feel my feelings—what it was like. Like wanting to crawl inside yourself and hide.

I’ve spoken with people—now, on dating apps, of course—who are locked in that place. Afraid to try; afraid to be hurt; afraid of—seemingly—everything, outside their safe little bubble. I’ve tried to pull them out, convince them—with reason, with logic, with support, and by exposing myself. (Perhaps a poor choice of words in the context of dating apps. Nevertheless.)

It doesn’t work. Obviously. I don’t want to play therapist—or maybe I do, a little—but no one asked, and that’s no way to start a potential relationship. They may call themselves overthinkers, or anxious, but it’s fear. They are afraid, and I think, often, the fear that traps them—that looms so large in the mind—is overblown and will wither when exposed to the light of day. I think we all know it’s true, but fear—and maybe, possibly, often, the resultant shame—is a powerful enemy.

I feel I learned very well, growing up, how to do the things that needed doing. It was modeled for me—for us. The bills were paid on time, dinner on the table every night; go to school, do your homework. There was no drama, no uncertainty. Mom took care of everything, and Dad—who knows—he was working. A solid baseline level of function.

But I’m not sure I learned more than that. I didn’t see decisions being made, choices supported. There was no discussion. No one brought something up, to the group, looking for support, for help—looking for a reason to try something scary. We came forward with a decision, I’m doing cross-country; I want to play the clarinet (before the alto sax, I played the clarinet); or, from my parents (my father), we’re going to open a restaurant. Every decision I made, growing up—for the most part; I can think of a couple exceptions—was made alone, in my own head. Even amongst ourselves, it seems, we were not vulnerable enough to air our uncertainties.

I’ve had to learn those things later in life: How to share and support. How to connect. The incredible humanity that can result when you choose to let your guard down.

***

Sitting where I am—sitting—it’s all hard to comprehend. So, what changed? And when? And how?

I’m not sure I know. I heard about a book to quit smoking, and drinking, and whatever (there are several). Nikki Glaser (the comedian Blake Griffin pretended to mistake for Larry Bird) said that reading it was all it took for her to quit drinking. She was convinced. All it is, she said, is logic—an aggregate of reasons. And—I suppose—if the reader can hear them and take them in—and they value their lives—they’re convinced. Or, at least, they’re convinced to make a wholehearted effort.

I think that’s kind of what happened. It wasn’t one book or revelation, for me, but years of self-reflection. The things that used to seem so difficult and scary, embarrassing or overwhelming—the things that were just impossible to talk about—I’ve learned that that is the good stuff. That’s the stuff that most needs to see the light of day.

There’s a Jim Carrey (and Zooey Deschanel) movie called Yes, Man. Living an empty, lonely life in which his response to every request is “No,” he’s drawn into a cult whose mantra is an enthusiastic (and somewhat deranged) “Yes!” He agrees to say yes to everything that comes his way, and comedy ensues.

His fortunes turn very quickly and he sees that it works. It’s absurd and extreme for effect, but makes a valid point. I try to default to “Yes.” To trying new things. To trying. And “No” to the fears that prevent it. It’s a form of optimism; embracing open-mindedness.

Some examples of my yesses over the last few years: Yes to dating apps—I’ve met some great people and am currently seeing one of them (my biggest yes, for sure); yes to writing and publishing a memoir—truly, a long series of yesses accompanied by periods of uncertainty; yes to volunteer opportunities—two at the moment, and looking to add a third (mentoring); yes to flying, camping, and taking a bus in my wheelchair.

It’s anxiety-inducing, sure. But often, that just means it’s worth doing. Anxiety means you care. I try to push through it.

***

It is generally accepted that personality types are set for life. People identify themselves proudly as Type A, or, perhaps, as often, use the label to explain or excuse their behavior. (No one seems to self-identify as Type B; it’s gotten a bad rap.) It’s a spectrum, not an either/or; I think mine has moved down the line.

Type A characteristics include: competitive; driven/time urgent/prone to stress; hostile, aggressive, and controlling. Type B are summarized: relaxed; patient; easy-going and adaptable. (Wouldn’t you rather hang out with a B?! I would; A sounds like a nightmare.)

I was certainly never wholly Type A, but I’ve become less competitive, and more patient and adaptable. It’s been forced on me, and ultimately, I’m happy with the results.

***

And maybe, after all that, I’m full of shit. Pompous. Holier than thou. Maybe I’m the worst kind of ignorant: I think I know something I don’t. And, from my high horse, I’m spewing my bullshit down on you. Well, if so, don’t look up.

But to answer my original question: Who or where would I be if not for ALS? It’s very hard to argue that I would be “better off,” but as I’ve shown, it’s not that simple. ALS has taken so much—the breadth of which, I can’t even know—but it has also given. I like who I am—if only in my head—and while hopeful about my would-be present, overall, on the surface, I’m afraid of who I might have become. I’m afraid I’d still be the same.