I Make the Connection

My cousin and his family were in town for a visit at the start of August. I haven’t seen him (them) in more than ten years and really, being seven years older and growing up in New Jersey, I’ve barely spent time with him or his sister. (I believe, however, that it was his hand-me-down red ski jacket that caused me such grief, or, at least, proved a contributing factor in my middle school bullying. So, he has played a role in my life.)

He, his wife, and their 16-year-old son spent three weeks in the northeast from their home in suburban Atlanta. They were up in Vermont for a few days: we visited at the house, ate some meals out, saw a band, and did a number of tourist favorites. It was nice; they were easy to spend time with, and I got out of the house and my routine.

Two things occurred to me as a result of their visit: Questions regarding the nature of family and the role it has played in my life; and, the not uncommon nostalgia I experience as a different person in the same place. They’re both about the past and the present—and change. They’re different on the surface—one (nostalgia) much more frequent in my thoughts—but in some ways—in my life—they’re the same.

***

I don’t have a real good grasp on the concept of family. I guess I did when I was young: We (the four of us: Mom, Dad, older brother Nick, and I) lived around the corner from Mom’s parents and saw them regularly, as we did (in the opposite direction) Dad’s, but they were more distant. Mom’s brother and his family had a presence in our lives, however small. Dad’s sister and brother and their families—one close and one far—were almost merely conceptual. This was my default as a kid; a normal, semi-functional family.

But gradually, that changed—people left the chat; we lost members. Pépère as I’d just started middle school (heart failure, a botched surgery, and an insurer-induced premature return home), Uncle Bob a few years later (cancer), and, of course, my older brother as I’d just returned from my first year away at college. Emptiness ensued—and continues.

Many times in the years since, I’ve heard friends mention family obligations: I can’t this weekend; I have… I don’t ever remember saying such a thing; before any of this, but especially after. My family never had those get-togethers, and dinners with my parents were too frequent for any one to be special. And often, that was hard; I’d feel left out. I didn’t have what I imagined they had—big gatherings at the holidays—and I don’t know if anyone ever noticed that I remained silent in those moments. Friends must have seen the contrast from the other side. (I know, of course, that these obligations may not have been enviable; perhaps the grass is always greener. Nevertheless.)

On Christmas Day, 2006, after a day (and a dinner) with my parents and mémère, I returned to an empty apartment. Neither of my roommates showed up that night and I sat in a rare, bittersweet solitude in the glow of the lights strung to the wall above the windows. I don’t remember many nights of inactivity at “244”; it was a hub, a place where people gathered. That night, it felt like my home since Nick’s passing: quiet, eerie; I’m the last one awake in the Christmas tree glow. It was my choice to return, to be sure, but the others must’ve had a reason to stay the night with their families. As was familiar territory: I reveled in my independence, and also felt alone.

Alone. I’d had a similar night almost two years prior, just after moving into my first off-campus apartment, on what must have been one of the first nights in January—a weeknight, but that didn’t stop the guys in the apartment beneath ours from broadcasting their raucous ways through the floorboards. Eighteen months after Nick died, following a semester commuting from my childhood home, in some ways, this marked a final step in my transition—to a new me; to a new life. And yet, melancholy isolation amongst joyful neighbors felt all-too-familiar. And after graduation—immediately following the ceremony and pictures—I walked back to my apartment, stripped off my cap and gown, shirt, tie, and suit pants, sat on the sofa, opened its armrest storage compartment, packed a bowl in the awaiting glass pipe, and smoked some pot. Alone. (My dad later said he’d assumed I’d want to hang out with friends. They were all with family. Of course.)

I’ve thought a lot about those outings with my cousin and his family. It’s hard for me to compute; I don’t have any family my own age—of my generation. In practicality, anyway. Not that play a role in my life. Not as an adult. Not since my brother died.

I’m all alone, in this way. I don’t often see eye to eye with my parents; we’re of a different generation and have different values. We see the world in different ways—I am reminded every day. Whether it’s putting down the things I choose to eat, choose to do, choose to read, or judging everything and anything on the planet in a way that physically disgusts me, it’s been clear for some time that I am an outsider in my own their house. (I’ve realized this sounds harsher than intended, but I’m leaving it in because sometimes it’s true.)

My cousin and his wife felt more familiar—actual family that could also be chosen family. And that was nice; comforting. It was a reminder I’ve been needing, somehow more powerful coming from family: I’m not an outsider; I fit; I’m accepted.

***

We were out in Burlington, eating dinner on the patio at The Farmhouse on a Thursday. I’m so rarely out in the evening; I’d often like to take a jaunt down our dirt road after dinner, but even at the height of summer—with plenty of time before dusk—I’m strongly discouraged from doing so. It’s my favorite time of day, those few hours before dark. It’s so peaceful: the sun falls in the sky, its heat no longer oppressive; the landscape quiets as the natural world prepares for nightfall. Summer evenings, and nights, they’re magical and fleeting.

And being out in downtown Burlington: it’s different and the same. It’s nostalgic for me, and as the darkness came on, I felt it. It’s a world I’ve not visited in some time—a long time; can’t visit. Of restaurants and bars, drinking and music and dancing: nightlife; it’s been so long. As we approached my van—its wheelchair accessible ramp to be unfurled—I sat for a minute and watched as a woman pulled open the door and entered the bar across the street. Finnegan’s; not one of the more popular college bars (as if I still know), I told my cousin (repeating myself, several times, as he leaned in apologetically), but there are so many.

Freedom; that’s really all it is. Being in that place, at that time; it reminded me of all that I’ve lost. It hurt. Even that night, I wanted to meander back down Church, just to check it out, see the people at outdoor tables; see the life, be part of it—drink it in. I wanted to exist in a place that felt familiar. It’s so rare I have the chance—maybe I should’ve said something.

***

I wrote a short piece on my old blog, in September of 2013, titled I Separate My Life into Segments. It points to the two seminal moments that have shaped me—my brother’s death and my ALS diagnosis—and examines the before and after. Those two things. Sometimes they seem like everything.

It’s hard to remember having a brother. I’m so different (in adulthood), I don’t know what it’s like. The me I am now doesn’t know how it feels to have a sibling. A few days with a cousin I hardly know was the closest I’ve gotten. It’s crazy to think that I both miss it, and, at the same time, can’t imagine how it feels.

It’s the same with my post-diagnosis transition: It’s just been so long; it’s hard to remember what life was like before. All of it; so many things. Stairs; I cannot begin to fathom running up (or down) a flight of stairs. Shooting a basketball—just lifting an arm would be amazing; riding a bike—how does that balance come so easy?; skiing—sliding down a mountain strapped into two unmoving planks—in the woods amongst the trees. Imagine jumping twenty feet in the air, like a human-sized cat—impossible. That’s how I see so many things.

Maybe that’s the common thread: I just want to be part of the group. (Don’t we all.) There was a time when—for the most part; certainly not always—I felt like I was. At home, in the neighborhood, at school, among friends and among family. I don’t want to go back, but to pull the past forward, that would be nice. It would fill some holes.

It’s impossible not to feel these things. I can ignore them—as I was taught as a boy—but avoidance is not the path I’d like to choose. I’d like to let them wash over me, feel them, examine them. I no longer want to pretend that feelings—both mine and others’—don’t exist.

My brother is gone. The life I once led barely a memory. I use a wheelchair and have lost my independence. I’m said to be dying. My parents are the only family I have, and I need them. Every now and again I get a glimpse of what was, what feels familiar; I make the connection. It’s bittersweet—almost overwhelmingly so—but I don’t look away. I’m strong enough to handle my reality. Sometimes.

***

Of course, all of this (most of this) heavy reflection came afterwards. I was able to be present and enjoy time with my cousin and his family—I don’t want to lose sight of that. For three days I got out of my routine, conversed, and connected with family. That’s what matters. All of that other stuff only exists in my head.