Human beings need 1) Safety; 2) Satisfaction; and 3) Connection.
What does that mean for people living with ALS?
I recently learned what I’m sure is a very basic anthropological lesson on the universal needs of human beings. I’ll attempt to paraphrase the descriptions of each:
Safety: Physical and emotional safety right now; free from anxiety over physical threats, but also criticism and controlling behavior; feeling at peace and at ease.
Satisfaction: Feeling a sense of accomplishment; gratitude for what you have; experiencing pleasure and contentment; feeling motivation, enthusiasm.
Connection: Feeling connected to others and oneself through self-worth; compassion, empathy, kindness, forgiveness, generosity, love.
These three universal needs can be used to explain so many of the difficulties faced by people living with ALS.
For a lot of pALS, it’s hard to feel at peace and at ease. Always trying to stay in the moment is probably the only way feel safe. I’m usually pretty good at being present. For me, when I do spin out, I’m stuck in a loop of rehashing the past rather than worrying over an unstable and unacceptable future. I am thankful to live in a world where I don’t need to fear for my physical safety.
I think this is the one that a lot of pALS struggle with the most. But it’s not all so bad. People say that when something terrible happens, you’re more likely to take notice of all the good things in your life. Practice gratitude; feel appreciation. And I’ve seen and experienced so much of those feelings. Sunshine; the outdoors, and even a rain storm; music; conversation; family and children and friends and relationships; food and drink; sports; movies; books; art; you name it. It’s clear that the ability to be present and enjoy simple pleasures can be awoken or enhanced by living through tidal waves of shit. And I’m thankful for that. (See! Gratitude!)
The other half of the equation might feel much more important (to most, I think): productivity and the accomplished feelings that come with it. A fellow pALS put it like this: We are Human Beings, not Human Doings. It’s a poignant distinction for those of us who have lost so many physical capabilities. We have to constantly remind ourselves of our value beyond what we might accomplish. It’s a difficult (or impossible) lesson to internalize.
We have a deep need to be (and feel) productive. Duh. What people “Do” is who they are in the most literal sense. Do you see yourself as something other than an accumulation of the many areas where you spend your time? If you don’t play football anymore, or you’ve retired from the police force, you’re no longer who you used to be. Your identity has changed.
Personally, I’ve learned that feeling a sense of accomplishment is very important to my mental well-being. For almost five years, living alone on a dirt road beside an apple orchard in rural Addison County, Vermont, just getting through my days seemed to be enough to keep me sane. Well, most of the time; I wasn’t without periods of boredom. (Boredom is the opposite of productivity; that’s why it can be so dissatisfying, at least that’s my understanding. If you’re never bored or even long for such a novel, even privileged feeling, you’re likely very productive in your life.)
Making my meals and cleaning up; dressing and showering; starting and ending each day maintaining a fire in the wood stove in the winter; working a couple of hours a day on my laptop; running errands and seeing friends and family and getting out of the house in my car; taking care of an especially low maintenance cat; and anything else that might come up living alone. It might not sound like enough to fill the time, but for me, 3 to 7+ years after an ALS diagnosis, it usually was.
There were everyday struggles with each of those items—propping my elbow on a small pop-out on the shower wall to reach and wash my hair; or failing, yet again, to get the sock over my toes—but there were also surprises. Dropping a plate of spaghetti on the kitchen floor and getting painfully onto my knees to try to clean at least some of it up; or falling in the driveway, or the bedroom, or out in the snow, stubbornly attempting to bring in more fire wood. However difficult, however frustrating, all of the daily tasks of someone who lives alone filled my need to feel capable and accomplished.
When I had to give up my house and car and move in with my parents in the first half of 2019, nearly all of that went away. I had to find new ways to get that satisfied feeling, mostly while sitting in place. (If you can step back and see the bigger picture, outside the lens of the modern world and all of the things we might take for granted, the fight against boredom is one hell of a privileged problem to have.) It hasn’t been that easy, and I still struggle some days, but I’m very aware of my need to feel a sense of accomplishment. I’ve found writing and reading and advocacy; I still have my work; strangely, riding down the road in my chair can feel satisfying; even building or maintaining relationships can fit the bill. The individual actions don’t matter; the feelings that result are irreplaceable.
I think it’s hard for people with ALS not to feel alone. Everyone may not agree, and connecting with other pALS—via social media, video chats, or even in person—certainly helps. But when I’m out in the world, it’s hard not to feel like I’m the only one. I do feel some kinship with other wheelchair users—whether power or manual—the way motorcycle riders flash each other a low thumbs-up. But I know most of us aren’t really the same, only that we share an understanding of living with a chair. And really, even on those calls with other pALS, our differences are abundantly clear in our appearances and voices or lack thereof. But of course, if anyone understands, they do.
Physical limitations are isolating by themselves. Friends brought together by athletic activities may fall away when it’s gone. Everything becomes more challenging; all sorts of common ground may fade and old relationships have to be remade. Some may get stronger, but others—and I can tell you this both from personal experience and from the often heartbreaking stories I’ve heard from other pALS—can wither and die. I’ve even heard about family members who “can’t handle it” and stop showing up. And the distance grows. (For some people, sadly, true empathy is so terrifying they won’t even try. Avoidance is the easiest way out. And the weakest, laziest, most short-sighted, immature, and regrettable behavior. Just pretend we don’t exist; that’ll make the pain go away. If only it were that easy for us.)
Plenty of people experience the opposite: relationships with partners and children, close friends and family grow closer. Gratitude and appreciation gain importance; people express their love more openly and frequently. When a loved one’s time is short—or at least perceived to be—people either get much closer or much farther. For those who choose to get closer—let’s not pretend it isn’t a choice—they often report a strengthened connection unique to any relationship they’ve experienced. It takes genuine acceptance and a willingness to feel the entire range of emotions. Some loved ones may choose to change and adapt to new circumstances; some don’t, or perhaps in their minds, can’t.
Part of the definition also describes the connection with oneself; I feel this very strongly. A big part of the ALS experience—for me, anyway, but I can’t imagine differently—is that your life slows down. A life in constant motion—without any time for reflection—slowly (or quickly) gives way to hours spent inside one’s own head. For me, ALS has caused a lot of—often deeply rooted and unexamined—fears to fade. I’ve learned how to be more of my genuine self. It’s allowed me to better understand who I am and what I want by maturing past often petty, irrational fears to embrace vulnerability. With a terminal disease, what’s there to be afraid of; what could be so important? Fuck it.
For me, Connection is the area where I’ve struggled. Without a partner at my diagnosis, and unable or unwilling to try to find one, I took refuge among friends. We continued as if nothing had changed; I hadn’t accepted, couldn’t handle my reality. It’s been a long time since those days and I find myself in a bit of an opposite situation today. I don’t see my friends nearly as often as I’d like, but I’ve been purposefully seeking a partner of some sort.
For the first time in my life (really), I’ve been making a real effort in my dating life. I’ve talked with dozens of women since posting my profile—some of whom have actually agreed to spend time with me. I’ve actually gotten to know some of them. I know it seems so simple, but for years, I never really tried. “Put yourself out there,” is the cliché, but, of course, it’s more complicated than that. Even in the online dating world (or maybe I should say, especially in the online dating world), so many people are closed-off and defensive and hiding. I’m not. I’m trying to find a genuine connection. And unlike so many profiles professing the same thing, I actually mean it.
Someone asked me the other day what I’m looking for in a partner. Again, a seemingly easy enough question. But in my past life (that’s what I call the period before ALS and my self-reflective metamorphosis), I could never have answered that in a million years. This is what I wrote: “That's a very good question. The things I value are kindness and empathy, intelligence, openness and honesty and a willingness to let others in and form a genuine connection, fun, goofy, able to laugh at oneself and not take things too seriously or get defensive, someone who enjoys conversation, someone comfortable in their own skin, who can be present and not worry about perceived awkwardness, someone easy to spend time with.”
What I mean to say is that I recognize my need for connection. Though I’m sure it’s particularly uncool to say this, it’s probably the most important thing in my life, and I’m finally treating it that way.
I have a date tomorrow. Can’t wait.