All this. The writing. The fighting. The bailing and sorting. All of it is to fend off, to hold at bay that which I can’t honestly accept. I know it. I can tell you roughly when it will happen, but I can’t honestly accept that I will die.
My unwillingness is part of my process. I acknowledge it, consider it as often as daily. But still, I can’t accept it.
Perhaps that’s okay. Maybe that’s my way of feeling it. Perhaps the coexisting knowledge and the unavailing, unable acceptance are set in contrast to highlight for me the value of this beautiful, maddening, moving and exhausting existence. It’s possible that these countervailing internal realities provide propulsion and chip away at resistance.
I’m more tired than I used to be and strangely more motivated to leave some essential mark on the landscape of my life. It’s possible this is the result of a desire to stretch my finite to infinite. I could be trying to extend my influence beyond my horizon. Seeking such validation nakedly is often viewed as shallow but I’m okay with the idea.
Problem is I don’t know that life will allow me understanding. It seems it will find new ways to slip my grip if I’m ever able to grasp it and wrangle it for so much as a moment. The meaning I give to the experience may be all I’m afforded. Might be all any of us are. If so I’ll know this, though wishing and wanting it ever to have been more, I’ll die knowing I’d never want it any other. I’ll know mine was a fortunate life. Were I to die before typing this line I can assure you it would be the passing of a lucky man who was given his share and then some of love and experience and challenge and comfort.
I don’t know what all this is for and I don’t know what it is that pushes me. I know however that life is short and it would be if lived in triplicate. I can’t stop thinking and won’t stop looking for meaning I know will elude me.
‘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.
It’s in how I tell my tales
All of it
All of me is there
If you are ever curious
I measure my sorrow in tears
I measure my joy with them as well
Joy is in the laughs
As is some pain
I measure my love in work
And in hugs and kisses
Love is in kind words
It’s even found buried in hard ones
My anger is measured by words unspoken
And by words hidden away until no one is looking
Uttered loud enough for only me to hear
Anger I find is ignored with great effort, risking great peril
My thoughts are fleeting and measured by the sentence
I fill my glass of thoughts that come slowly
Then I pour out my glass all at once
I clean it and put it away.
I enjoy accomplishments
But they don’t tell any tale beyond the obvious
Accomplishment can’t sustain joy
Accomplishment measures accomplishment and little more
Experience is it’s own reward and should be noted
It is not to be questioned or diminished
A trip around the world can contain less experience than an evening on a porch
Either can be where the meaning of existence resides
Meaning is something only I can hold
My meaning is of my making
It is suited to me and fits only as well as I can make it
It’s an effort I find worth pursuing
In the end it’s love
It is the only meaning I can summon
The only purpose I can surmise
It fills the craters, it gives them meaning
Love is the only currency that has intrinsic value
It is the only true meaning
It is my sole accomplishment
It is my greatest failing
I sometimes hold it to close
I forget to give it away
I seem to think I can care for it and make it grow without ever letting it go
I am wrong. It’s only the giving of love that ever makes it grow
No one can tell me that love is finite
Love is endlessly regenerating
It is life that I must remember is finite and will only end in death
So I must measure my life by how much love I leave in its wake