When did those show up? Those points. My skin is falling, my face is aged and aging and now I have points. Hanging on either side, mid chin. They are not shocking, until you notice them. Staring blankly in your mirror shaving. You see them. They are just there.
I don’t remember how old I was when my dad told me that it was mildly haunting to look in the mirror one day and for a second see your father staring back at you. It sounded like it could certainly be freaky. To know that you are looking out of your own eyes, possessing your own body, studying a face that is yours, you know, but doesn’t look anymore like it feels. It feels like that face you had in high school. That young, narrow, strong, perfectly fitting face you had. The one you stared at and inspected for laughs when you were little. Searched for blemishes when you got older. Ignored entirely for what appears to have been 20 years now as you got on making a life.
It was a utilitarian face. One that was being used to see the world, eat the food, drink the drinks, make the jokes, scream the pains, howl with laughter, bare to the elements and wear through it all. You hadn’t considered it for years. And years. And there it was. A face wholly your own but weathered and worn by time.
The first reaction for me was to recoil a tad. How did this happen? Why did this happen? The answers are obvious but the reactions are cascading. Shock, worry, awareness, fear, love and wonder. Reflexively I recall my own father sharing this moment with me, a young boy unaware of how this must have felt. I’m aware now and the moment, the memory of that brief conversation in a room long ago left for others to live in is reformed. Some new meaning, some heavier weight.
I’d never noticed anyone other than me looking back at me in the mirror until recently. I’ve played with faces when I was little, trying to see if I could make myself laugh or be angry or scary or silly. I’ve tried to pull faces, to see what others saw as I came into my own and was desperate to figure out who I was and thought the answer might lay somewhere on my appearance. I tried to hide the emotions I felt that my face betrayed. I’m embarrassed by that now, but shouldn’t be. It was some strange form of embarrassment that compelled me to try so hard to not show anything but anger for some early man years there.
Now I see a hint of my father in that face, but just a hint. There’s some of my mother there to. It’s not what I want it to look like. I want it to have so much more left to find. At least that’s the first thought. I want it to look like me. Like the memory I’ll have of my face whenever I can’t see it. The one that had no cause for lines and no time for sag. The me that was stupid but pretty. The energetic, unknowing eyes. The vibrant and taut skin. The me that wondered what it would feel like to see the years looking back at me from the past.
‘Tell me something you love about yourself. What is something about you that you really like.’ his mommy asked.
‘I like that I’m weird. I like ‘small potatoes’. I know it’s supposed to be for little kids, but I like it anyways. I like that I’m weird like that.’ Charlie said.
When Karen came down from putting him to bed she could barely contain how excited she was to tell me about this little conversation. She was right to be excited. I couldn’t have been happier to hear it.
‘I like that I’m weird.’ How great is that?
Getting comfortable with my weirdness is something that’s taken me a lifetime. First step for me was seeing that I was weird and trying with all my might to deny/hide it. Since then, since getting to a place where I passed as a normal I’ve been working like nobody’s business to try to unburden myself of my various insecurities and collected disguises. I needed to conform, emotionally. I needed to fit in first. It left me safe and sad. Once there I needed to get back out, which was harder. It was definitely harder to reclaim my ‘weird’ than it was to fit in.
So to hear this news, well, I just wanted to wake him up and tell him how proud I was of him. I wanted to tell him he’d discovered the secret to happiness. I wanted to tell him that loving things you aren’t ‘supposed to’ is something it took me forever to learn to do and longer to be comfortable saying I loved those things. I was so impressed with him. I wanted to open YouTube and start playing endless episodes of ‘Small Potatoes’ with him.
Furthermore I wanted to tell him that his life would forever be better as long as he is true to himself. If you like sports and that’s not weird, so what, it’s true. I guess that’s it. I felt shame around my weirdness. Still do from time to time. Then I come here, I tell on myself and I learn to get comfortable being me. My weird self. My journey is as much about meeting me as it is about meeting the world and he has a moment now, one he can call back on and know, being weird, feeling different, it can be a huge gift!
I love my little weirdos so damn much.
‘I really love it. It’s crazy. I’m here with people from all over the world, we work around the clock and we get one day off per 13. It’s perfect.’ I said. I meant it.
‘Joey, I’m so happy for you. I’m so excited.’
‘Thanks. It’s just a lot, but I think I really like it.’
This was my first call home after the guests had arrived. After the week long, 9AM-9PM trainings we were all ready to get to it, whatever it was. Even with that much time spent learning, with that many people who’d done it before there was no amount of preparation that was going to give me so much as a clue as to what that first day would entail.
‘I got picked to be on the bus that went into the city to pick up the guests. It was crazy. Unbelievable how much could happen in so short a time.’
About half of us staff were selected to ride the bus down to the city that first day. It really was a good omen, even if I didn’t know it yet. I’d be prepping the busses and coordinating the drop offs and pick ups within a couple of years and would continue to do them for many years after. You really had to trust the people on that crew. Any number of issues could arise, between the guests and their anxiety or separation or some other totally unexpected thing having to do with their diagnosis to random cars breaking down in front of you in the Lincoln Tunnel, car accidents, staff walking off never to be seen again (this happened more than once, place could drive you mad), incidents between guests on the bus, anxious, angry or just plain mean parents (as a rule they were ALL lovely. As a rule. Rules are ocassionally broken), mixed up medication, short fuses, insane heat, torrential rain. Whatever we ran into, whatever ran into us, we were there to check in 60 or so individuals with intellectual and developmental disabilities, process their personal effects and account for them, ensure they were fully stocked with meds, check in money get them on the bus and start to entertain them and continue to do so, and to be entertained by them for two weeks, sun up to well past sundown. It really was the most amazing thing I’ll ever do. Having and raising kids will mean more, but we can relate to so many others who’ve done it. But this, this was a singular experience.
‘Oh, yeah. Thing is they aren’t campers really. They’re grown ups and face it, grown ups don’t go to camps. They go on vacation. So they aren’t campers, they’re guests.’
‘That’s interesting.’ Mom said.
‘Yeah. Not so much, it’s just what it is. You forget about the word after a day of using it. Not even when you hear it so much during training. Truth is I was ready to see some guests by Sunday. They got here, Sunday.’
I was already spewing my person first language, practicing my committment to treating people respectfully and in line with their life experience and not the way I had before those trainings, which would have still been sensitive, but wouldn’t have been mindful of age appropriate language. In real terms I have learned a hand full of things in the 22 years since that week of training, some real valuable things, but none of it will ever come close to what I learned in those two weeks. Two because the training really didn’t end until after the first week that you were putting it into practice with the guys.
The training wea almost all centered around the arts and crafts room that was off the kitchen, the dining hall and the administrative/infirmary hallway. It was painted grey cement floors with knee to ceiling roller windows lining the walls to either side of our rows of chairs we lugged back and forth to and from the dining hall between meals to reset our classroom all day every day. I was given basic, sanctioned safety trainings, by the book and repeated yearly or near yearly since. I was given first hand trainings on what it meant to work in a field that was still populated with residents and former workers at Willowbrook State School. I met some of those who transformed our entire service system, from the inside, from one fraught and underfunded, filled with systemic abuse into one that was so truly person centered that we busted our asses to ensure that every person was given every ability to choose every single activity on their own and we would modify everything to ensure they could do it regardless of ability. I learned what it was like to be a sibling or a parent of a person with a disability from one of those parents. I met some of the heroic figures who said no to Doctors in the fifties who told them to put their child with a disability in the institutions and forget them. I met many of those children who found their way, through decades of darkness, both literally and in every other way and emerged on the other side heroic and still in touch with their tender and delicate humanity which had been so forsaken. They taught me. And I soaked it up. I loved it.
And I wasn’t alone. There was a core of us who made it through and reaped endless rewards because of it. There were at root about 30 or so of us who worked in cabins, lived with the guys. We were on call all through the night and working every waking minute (save the one hour break you lived for in order to shower and make a ten minute call to whoever to say how amazing the whole thing was or to cry because it was breaking you). Of those thirty about 16 or so made it through the summer. My cabin started with the full allotment of 6 staff. We lost Ausberto and Jim the Marine and I can’t remember who else, but one more. We made it through 3, two week sessions with just me, Mike and Tony. A suburban, an urban and a comrade. We cared for and loved 16 guys in that cabin every day. Two in wheelchairs? No problem, everyone will have what they need cause anyone of us would push ourselves miles past our limits to make sure of it. Truth is we did it to gut busting laughter much of the time. There were moments of discord and hot tempers, but they were over fast. Still love those guys and dozens more and would have the time of my life sitting around a fire all night reminiscing on those days. I can say confidently we all would. I met real family there.
‘Joey. I’m really proud of you.’
It’s still the most important thing I ever hear them say. Whenever they do I just eat it up.
‘Thanks mom. I think you would love it here more than anyone.’
And I’m sure I was right. It was a utopian society experimentation lab built on the ideals I learned from her. Love, compassion, understanding, committment, service and tireless giving that results in you getting so much after giving all of yourself.
Brockport is a charming Victorian village that straddles the western Erie Canal and it is made only more beautiful for its near constant snow cover for much of the year. We are natives of the snow belt and there was endless pleasure to be derived from its copious bounty. As kids that first snow fall was something approaching magical. We would watch the weather reports, sometimes as early as the beginning of the school year, but usually just before Halloween or shortly thereafter, waiting to see those snowflakes. If it was going to come in the night we’d stay up as late as we could (we were and remain a family of night owls) in hopes of seeing those first flakes fall. If we didn’t make it we were rewarded with the fresh, bright, clean sheet of dazzling white when we woke and it really did make a kids heart skip a beat.
In hindsight I have a great deal of love and respect for how my parents dealt with it. We moved to Brockport, well, Hamlin initially, but to the area when I was a month or two from arriving in the world. Myself and my brothers and sisters are natives and we saw endless delight in skating the ice and digging tunnels in the snow, making a web of undersnow crawl spaces that were so much fun to explore and play in. We couldn’t wait to go sledding down the hill next to the high bridge at the back of the park across the street. We’d be there for hours on end when the snow was good. All day. For my parents winters were a challenge. I see that now as a parent myself. But I’ve moved away from those winters. Sure, New Jersey has winter and the cold can be even worse down here, but the snow, there’s no getting around that.
Having the fairly safe assumption that we would have a White Christmas was pretty great. Our family traveled on Thanksgiving, but Christmas always was at home. When we were lucky it wasn’t just the sitting snow, it was the big fluffy fluttering of a beautiful snow dancing in the floodlights out the front window as we headed out on Christmas eve. We were going to the barn mass usually around 7pm the night before at Martin Farms. It was so cool to see all the folks and more from our weekly mass out and standing, excited and cold. Styrofoam cups of coffee steaming in hand. The kids in the Nativity scene dressed in period and regionally appropriate clothing for Jerusalem, draped over the heavy coats and winter hats. There was livestock present and lights dim.
After mass we got pizza. That was our tradition. We’d all mill around, wondering what the small gifts around the tree in the smolderingly hot living room were. We had a cast iron stove that kept the far reaches of the house warm enough to be sure but made the living room, the secondary hub of our home (kitchen is always primary, no?) at a resting temp of roughly 90 degrees. You think that I’m exaggerating. You do. You have to. The reality is I’m being conservative. I can still feel it and not in some sentimental way. I mean my core temp is still cooling. It was geologically hot.
Sometime between the pizza and the wondering and the heat of the fire and the lights around everything dad would disappear. You wouldn’t notice. He’s like that. As central a figure as he is in all his life, he’s remarkably subtle and he can slip away without notice at any time. Some time after he was gone a strange rollicking would be heard from upstairs. It wasn’t quite from the roof and he didn’t enter through the chimney. Rather, Santa himself would come down the stairs. We would come to discover that he had made his way into the house through the drains. Why else would we catch him emerging from the upstairs bathroom. It started as a joke and was always received that way, but still, in our house the tradition is a tad askew, as we all prefer it. Sounds like something my older brother Mike would have come up with. It was already orthodoxy by the time I became aware.
Besides his penchant for coming in through the pipes there were other signs that our Santa was different. He wore the traditional red with white trim. His beard, though a bit cottony, was never the less white and long. The hat was a match. But there was something about that belly. It didn’t quite fit what you imagined was holding him up in those baggy pant legs. Nor was it really a belly that fit the spindly, long arms. One time I distinctly remember making out the points of a square, roughly the size of that throw pillow from the couch that seemed to have gone missing just then. Regardless, Santa was here and my extraordinarily tall, lean, and incredibly subtle dad was missing it. Again! Oh well…
Santa made it every year I remember while growing up. He would come and sit in Dad’s chair and read us all Twas the Night Before Christmas. We would all sit rapt with attention, trying to suss out how exactly we might be able to catch him this year. We all wanted to see him. We had been told quite early that he was just a story, not real, but we weren’t dummies. We knew better. We’d spend weeks planning our middle of the night espionage in hopes of capturing sight of the midnight, more ‘jolly’ version of this tall Santa with the familiar voice and lap. We never caught him, but we kept planning and trying and we always thought we might get a better chance if we could figure out from this story how he operated in the wee hours. It never happened and slowly the kids that sat at his foot transitioned to younger kids as older kids began to take in the story with mom, a bit behind the younger ones who didn’t want any distractions.
Santa then took time out of his busiest of nights to let everyone sit on his lap. Even Mom! We even have picture evidence of her kissing Santa. He would tell us all how we were on the nice list and that we should expect some presents in the morning. He would let us choose one gift from under the tree to open that night. At that point the only gifts were from siblings and Aunt’s and Uncle’s and Grandparent’s. It was agony choosing and you started days in advance. Picking up, shaking, maybe even peeling tape slowly and peeking. I mean, I’ve heard that some people did that. I didn’t, but I’m pretty sure some of the others did.
Before long Pop would return from wherever he had disappeared to so mom could get ready for the midnight mass. We would all be wound up on candy canes and hot chocolate and native excitement for getting gifts that was so close you could taste it. It was all too much and eventually we would go to bed. One by one, falling off and forgetting all our plans to catch the Ho Ho Ho man in the act as the snow flied outside our windows, dreaming of Christmas in our own perfect snow globe.
Today I’m looking back and projecting forward as I look at my son on Picture Day. Click the link to see my story on Mamalode.
As I walked away I could already taste the regret. I was making a mistake. I wasn’t sure how big a mistake. I didn’t really care either. It took all of a split second to determine that I was now going to go down on this ship, this manufacturing of a moment, perhaps a moment that would go down in lore as ‘Oh my god! Do you remember Joe? Remember when he was here, he stood right there. Oh my god.’ Really, what regret could I have that would ever make me feel like this was a mistake. So I had to change, put on some fresh clothes and act like it never happened.
As I walked around the corner I knew that everyone would be watching for me to emerge above the fence in the distance as I headed toward the dance/honeymoon suite building. My stride, for whatever reason, became easier. Less encumbered by the stress of the moment and even liberated by the squishing and dripping that oozed and fell from my clothing. I was getting comfortable with what I’d done.
Perhaps not as comfortable as my friend Evan.
Evan was a guest at the Lodge. Evan was about 50, fairly jovial and capable of being incredibly witty and acerbic. It wasn’t all an act, not by any stretch, but there was a peformative nature to Evan. He was in it for the attention, but he wasn’t over eager. He waited for his audience. He lived in my cabin the first year, when I was a counselor turned Lodge Leader. He was there in the second half of the summer when we were down to the skeleton crew/dream team of Me, Mike and Tony. A suburban white kid (me), streetwise city kid (I wouldn’t call Mike a kid back in those days, though in hindsight we all were) and a gangly Russian with an Italian-Americanized name (Tony. I’ve come to know home on Facebook years later by the name of Anton, a far more fitting name considering his surname. He taught me a thing or two about the world I didn’t know, a rapidly changing one in the 1990’s in Russia). I remember going to each of my cabin mates and seeing if they saw things I didn’t. I went to Mike to confirm that Evan was who he was after the following exchange. Before I tell you I should note that it was my first session in charge. It sounds cute, but it was running a cabin of 16 adult guests with various intellectual and developmental disabilities, including people with needs for physical supports, with 3 guys, all hovering around 20 years old, all with six weeks experience, who worked round the clock, 24 hours a day. No punch outs. No back up staff. It was stressful.
Anyway, about a week in to Evan’s stay I see him outside the cabin, at the other end of the fence we all hung out at outside (lodge) 12. I catch an eye, I look for his name on my ever present clipboard (I needed the prop to signify my authority) for head, no name counts…
Me: Evan, right?
Evan: Yeah, Joe.
Me: When was the last time you showered?
Evan (Shaking his head like Al DelVechio at Arnold’s saying ‘yup, yup, yup’): Five fucking years ago. Five long, happy, Jewish years.
Me: (5 seconds of silence) Bwahahahaha!
As you might imagine I grew quite fond of Evan. Not only for the effortless way he used cursing as a tool in his comedy, but for who I found him to be. Who we all did. When I checked with Mike after this he said, ‘yeah, he’s on my side, he’s pretty funny all the time. Unless he’s talking about Helen.’ Who’s Helen? I ticked through the staff, the support staff, the nurses, his fellow guests (who would be campers elsewhere, but we were all adults here, our guys had agency, they were not to be treated as children. Guests, please.) ‘It’s his mom. Mike said. I think he still lives with her. Actually, he can be funny with her too. But you can tell it’s different.’
Evan became a guy. We loved all the guys, but he turned out to have a little Rock Star to him. He was hysterical.
He was also foul mouthed. Not in groups, and not with anyone that didn’t appreciate it. But for me and Mike and Tony, he’d be there, every morning one or the other of us would run up to the dining hall to grab coffees for the crew as we got to the incredibly challenging job of getting everybody up and out on time. Whenever we saw him he’d not do anything. But if we said hello or good morning it was always met with a huge smile and a ‘Hello shithead, how are ya?’ He always said it with a little bit of Squiggy in his voice. He emphasized the how are ya and the smile and it was just so damn funny. There’s no way to recreate it here, but anyone that was close enough to him would tell you the same, it was amongst the funniest and most adored greetings I’ve ever received in my life. Honestly, if I’d never had kids it would be the number one greeting of all time. Hello Shithead, how are ya? With a giant smile and a genuine twinkle in the eye.
What had been regret was turning. As I strode away, aloof and sopping wet, regret was changing. Not to it’s opposite, per se. Rather, I was just starting to own it. To feel no way about my decision. It was just something I’d done. I liked this feeling. I could hear the tittering masses left behind, still giggling, some even guffawing and I liked it. I liked the attention. I liked the silliness of it. I even liked the carpe diem of it all.
Later that summer I’d be charged with taking Evan to the dentist. It wasn’t something that we did at camp without an emergency, so he must have had one, but for the life of me I don’t know what it was. Perhaps they had to pull a tooth or something. Whatever it was it needed to be addressed immediately. It could not wait for him to go home and it wasn’t enough for us to insist he go home.
I took my job quite seriously and at 23 it meant having the conversations, gently, that I knew I had to have.
Me: Now, Evan, it’s not like camp. We’re going to be out in public and there will be others around.
Evan: Oh yeah. I know dat shit.
He burst a second of laughter and then looked sidelong at me to see that it landed. It did. Just saying ‘shit’ was enough to make it funny. I know. It’s immature. I also know that he was not immature, was in on the joke and actually understood why it was funny. Judge if you like, but we were and are good at this and it was merely a grown man getting a laugh with crude language. It was normalizing and accompanied by a very real sense of humor that lived along side his performance art of cussing for laughs.
Me: That. You can’t do that while we’re at the office. I know you know that, but I have to say it.
Evan: I know that. I tell Helen all the time, oh yeah, boy, I know that.
This was our Evan. I didn’t have to bring it up again. We just chatted for the half hour or so that it took to get down the mountain and to the dentist. I gave him one more respectful reminder and we went in.
It was clearly a family practice and they must have been well aware of where we were coming from, and by extension who Evan was, or at least they had an idea that he was different. I have to say, Evan charmed everyone. He is an excellent patient. Why shouldn’t he be. He’s an absolutely lovely person!
That said, he was teasing me a little. Giving me those sideways looks. Answering questions straight when asked by the Dr. then looking at me to let me know that he knew what would be the funniest way to answer. He’d even be smiling as the phrase would go through his head, and mine, but the smirk never turned into uttering a vulgarity. I shouldn’t have been so worried. He’s a good dude. A good friend to all and an excellent companion for an adventure.
When his work was done and we left to go I gave him a wink of approval/thanks and he chuckled back. We were grown ups, out in the world, away from the camp. All that was left was to pay. I stood at the reception desk, Evan at my side and awaited the forms eagerly so we could sign them and head out for lunch.
Reception Staff: So we’ll just need you to sign this affirming that the work was done.
Me: So would you like me to sign or Evan?
Evan: You can do it.
Reception Staff: That’ll be fine. It was a pleasure meeting you, Evan.
Evan: You too.
He smiled bashfully. Even tilted his head. When he did he fell upon the number, the thousand or so dollars that the procedure was going to cost. That’s when the bubble burst.
Evan: Holy fucking shit. Helen’s gonna fucking kill me!
It boomed. I held back my laughter and you could tell. It was an active denial that was seen by all. He laughed outright, big and jovially, big belly bouncing. The mom’s with kids in the waiting room bristled. One laughed, thank god. The dentist, the assistants, all the staff snickered and smiled, some nervously and some like me, holding back. It was the one instant when we were in the middle of everyone in the whole damn building.
I suppose you had to be there, but it was amongst the funniest moments of my entire life and a good part of that was due to my discomfort next to my man Evan’s seeming indifference. He could have said that in church and his heart rate wouldn’t have budged nor a bead of sweat been anywhere near him. The man just knew himself, had reacted sincerely and was damn funny for it. He knew it.
My regret was fully gone by the time I was rising above the fence line and I was happy, damn happy I’d done what I’d done. My job in this magical place hadn’t really fit me right yet. I was still struggling to wear the ‘uniform’ of big boss man now that I was in my second year and first year on the Admin Team, the four or five of us who were the big bosses. I would be invisible as I strode from activity to activity counting names and looking stern. I was a little overwhelmed by the job at hand and I was trying so hard to look the part that I missed the whole damn point. That being, if you can’t have fun at a job where you are changing the world, making others lives magical and being transformed by that same magic coming at you from all angles, than what the hell are you even doing there.
I think that was why I did what I did that day. Instead of quietly opening the gate to the pool, popping in and eying up the lifeguards and the staff, ensuring everyone was where they were supposed to be, doing what they were supposed to be doing and leaving as quietly and stoically as I’d arrived, I did something different. Of course I still made sure everyone was where they should be. Of course I ensured all was safe. Then, in what amounted to street clothes, I strode right to the middle of the pool and fully clothed proceeded to make a show of the whole damn affair. And it was great. All the guys started laughing, but I stayed in character, never even cracking a smile. Which only made the guys laugh more and even some of the staff, who had to be tiring of my ‘transitional’ phase to leadership. It was a moment. Forget all you normals, we’re the weirdos and we’re proud of it. It was a story they’d tell at lunch. It was something so simple but so special that it had to have turned at least someone who was there’s whole day around. In fact I can guarantee it did.
No matter how much they screamed, or hooted or called my name as I walked up that hill, I wasn’t going to turn around. But as I got to the top of the hill and rounded the corner of the dance building a giant smile broke across my face. From that moment forward until I left years later I had the greatest job on earth.