Confessions of a Goofball – April 21, 2015

On or about the time I moved Massachusetts someone I love and care about called me a Goofball April 2015goofball. I don’t think I’ve ever enjoyed being called a name as much as I enjoyed being called a goofball. 

The Merriam-Webster online dictionary defines goofball, in part, as one who is “silly”  and defines goofy as “being crazy, ridiculous, or mildly ludicrous : silly <a goofy sense of humor>.”  Guilty on all fronts, particularly that last part about having a goofy sense of humor.

I am firm in the belief that a sense of humor – even a goofy one! – is a sibling of courage. I know no one who is functioning well in life after taking some of life’s more formidable beatings who does not have a sense of humor.

These past three years the goofball part of me has seen a lot of action. First, I was determined to give community life another go when I moved here. Ever since the shooting – I was held up and shot in the head in 1984 – and the attending brain damage and PTSD (Post Traumatic Stress Disorder) that ensued, living in isolated fashion has been my preference.

Re-entering community life has at times been terrifying. The thing is, each time I’ve climbed over or broken through a “fear wall” I am always glad I did. Now, three years since my arrival in Berkshire County I am more involved in community life than I thought was possible, for me. So much so that I find myself in rehearsals for a play by Samuel D. Hunter called “A Bright New Boise” produced by Mill City Productions.

Returning to the stage for me has, in more ways than I ever imagined, brought a large part of me back to life. I danced with the Joffrey Ballet years ago and was a member of the Quena Acting Company, an offshoot of Joseph Chaikin’s, The Open Theatre. By returning to the stage I’ve reclaimed a cherished part of life. Last night as we arrived for rehearsal the house lights were down and the stage lights were lit, the set well on its way to completion. There’s magic in them there lights.

When I got home last night I danced around the house with Charley, my black-lab mix, doing a rather admirable job of following suit. He’s a goofball too. Once a goofball always a goofball.

I’d have it no other way. 

The Tightening Noose

It is very rare my anger fires-up to slam the table top with fury level. Yesterday it did, blisteringly so.

When you are on a fixed income society deems worthy of a rent subsidy (Section 8 in my case) the rule of thumb is one-third of your income goes towards your housing, the subsidy pays the balance.  If you are single like I am, you have what’s called a one-bedroom voucher. The amount of rent your voucher provides for is determined by where you live. A one-bedroom voucher provides for a higher rent in, say, Westchester, New York, one of the wealthier community in the country. For a less prosperous community, the allowable rent would be lower. That’s fine. I’m okay with this.

Okay then. My current lease will be up soon and so I recently submitted documentation of my income to the area housing authority that oversees Section 8.  My monthly disability has gone up $18 and my monthly medical expenses (medication co-pays) have gone up $17.20 which means I am dancing on air with an 80 cents a month increase! (That dreamed about cabin cruiser will be mine in no time!) So, my income is pretty much the same as it was last year, which is why I nearly exploded in fury when I received notification yesterday that my portion of the monthly rent will increase by $45. That’s a big hit when you have a little less than $300 to cover food and gas for a two-month period.

I was boiling. On the phone, leaving a voicemail for the housing authority, hand slamming down on my writing table. Fury. There had to be a mistake. One third of my income to housing, cool. But an 80-cent increase in monthly income doesn’t translate into a $45 a month increase in rent. I was wrong. (Math and I have never been on friendly terms.) What I didn’t see coming was this: the allowable rent for a one-bedroom voucher in my area has been drastically reduced, anything over the reduced amount comes out of my pocket. It is moments like this when I want to throttle those hell  bent on protecting the rich and gut the middle class and the poor because God forbid those selfish slivers of slime sacrifice….what exactly?

Now, if someone reading this responds by attacking the government as if the government was and is this big bad nasty-ass entity, let me ask you something. Where exactly are the offerings from the private sector? Hmm? As for the very small minority who thinks that I or anyone in my position like it here because we are leeches, here’s a thought. Let me give you a segment of my life experience to live with; let me fire a bullet into your brain at point blank range, then come talk to me about how much fun your having.

By the way, the woman from the housing authority that works with me and the staff from the area Independent Living Center were very kind, very gentle, and very allowing of my anger and upset yesterday. God bless’m. They’re in no danger of being overpaid either.

In the meantime, the noose tightens, the pressure mounts. Thank God for books and coffee and friends and music and nature and, most of all, life.

Once more into the deep!

I’ve been afraid of the water since I was a little boy. Actually, to be more precise, I’ve been afraid of the deep water since I was a little boy. I’d ask the same question when, as a family, we’d be approaching a pool, lake, river. Is it over my head? And no, I’ve not forgotten oceans.  Never mind  oceans. I know all about undertows and know they’d drag me to my doom.  Forget oceans.

My fear had nothing to do with my ability to swim. I was a fairly decent swimmer as long as I knew I could touch the bottom with my feet. The moment I couldn’t, panic set in.

My fear of the deep water has always been with me.

Looking back. Both sets of grandparents lived in New Jersey. My father’s folks lived in Ocean Grove and my mother’s lived in Rumson. Both lived near the water. In fact, my mother’s parents lived right on the water. They had a couple of boats and, hanging off the end of the dock, was a minnow trap. One of my  chores was retrieve the minnow trap every morning. One morning I fell in. I must’ve been about five or six I suppose. The water was green and I was terrified flailing and then a strong hand grabbed me and pulled me to safety. My father had saved my life. It wouldn’t be the last time, either. Although he had died long before I got shot, there is no way I would’ve got back to my feet had it not been for my father’s presence in that moment with me.

Anyway, falling in, as you might imagine, did nothing to erode my fear. My next attempt at taking on the fear occurred when we were all at a public pool. It occurred to me that if I tossed in a kick board and swam to it, and then swam back holding on to it without touching the bottom of the pool, I could work my way from the shallow end to the deep end.  This is exactly what I did. Over and over I’d toss the board into the center of the pool, swim to it, hold onto it, and swim back. I made it all the way to the deep end and then, in an act that amazed even me, I jumped off the diving board into the pool and swam like hell to the side of the pool. When I got back to where my family was they applauded. They’d been watching.

Still, my fear of the deep water persisted.

Which brings me to the present. I moved to my new home in Berkshire County, Massachusetts a few months ago. I then got a membership in the YMCA. I knew, when I did so, that I was going to give swimming another go. It is unquestionably the best all around exercise there is and there is no doubt exercise benefits all areas of life.

September fifth was my first time in the pool. I swam one lap. I got out and sat in the sauna. The sauna, as far as I’m concerned, is the pot of gold at the end of the workout rainbow. The second time I went into the pool was on the fifteenth. I swam five laps. I began to increase the number of times I swam weekly and soon made sure to be there when the pool opened at 6 a.m. It was not lost on me that the man who swam  to my left every morning is going to celebrate his 77th birthday this February. He swims 36 laps every morning, one mile to be exact. The woman who swims to my right every morning swims in the neighborhood of 15 to 20 laps. She is 86. The man who swims to her right swims a mile every morning, he’s 70. You picking up on a theme here?

Anyway, I’ve been keeping at it. I now swim a mile every time I go to the pool, which is about five times a week.

Oh, and one more thing, the fear is gone. The only way to overcome fear is to head in its direction. Sometimes, you just have to swim there.

An Update for My Readers

Since the birth of this blog in late 2006 this has been the longest stretch of “silence” on my part. I thought it might be a good idea to bring regular blog readers (there are more than 1,500 of you) up to speed.

As some of you know already, I recently moved to Berkshire County in Western Massachusetts. I am steadfastly going through box after box of my belongings, deciding what to keep and what to toss. It is astonishing how much stuff one accumulates over the years. I work on this culling process on a daily basis and, after careful calculation, have determined that I will complete it on April 15, 2032, at 2:07 p.m.

I have several times been tempted to write about New York State Governor Andrew Cuomo’s proposed state agency that would, or so the governor says, pursue allegations of abuse of people with disabilities in the care of the state. In my view the proposal is little more than a headline grabber intended to make the governor look good – or so he hopes. It is especially troubling when the 100 or so companies that came out in support of the proposal are, for the most part, the very companies that would be overseen by the agency. Disability rights advocate Michael Carey is spot on accurate when he said the governor’s proposal was an example of the fox guarding the henhouse. Carey’s 13-year-old son, Jonathan, who lived with autism, was killed while in the care of the state.

I advocated for people with brain injuries for years in New York State and, until recently, the state never informed people with brain injuries what the results of their complaints were. This withholding of information was by design, not by happenstance, and it serves to underscore Mr. Carey’s point.

If New York or any state is sincere about tracking allegations of abuse for those under state care, they’ll make sure it is done by an independent group. The fact the proposed agency would be a state agency serves to document the insincerity of the proposal.

Here’s a suggestion. If New York State wants to get serious about protecting people with disability in its care, an independent entity like the Center for Disability Rights out of Rochester might well be the way to go.

Enough on this – for now.

I’ve been back on my bike for the first time in a long time and it feels good. I live near Mount Greylock. At nearly 3,500 feet it is the tallest peak in Massachusetts and there is a road filled with switchbacks that winds its way to the top. The climb is about six and a half miles and I have every intention of biking that before winter arrives. I also have my eyes on a bike ride of about 50 miles to help raise funds for the Western Massachusetts Food Bank.

And, of course, I am reading, voraciously as always. I do not think I would have lived as long as I have without books. I mean this sincerely. They have provided refuge for me during difficult times and vacations for me during good times.

I’ve received a emails from people lamenting the fact I was not at this years conference hosted by the Brain Injury Association of NY State. I was not invited. BIANYS leadership does not like being held accountable, at least not publicly, and certainly not by me. There are good people on the BIANYS board and I think those at the head of BIANYS are essentially good people. But they need to humble up and realize that the world, meaning, in this case, the association, does not revolve around them.

I can remember some time ago when BIANYS leadership, to its credit, had a number of us who facilitated support groups meet to discuss ways of improving and growing the support groups. Nothing came of it. In fact, when I suggested that BIANYS take a page from the Brain Injury Association of Massachusetts and run background checks on group facilitators, the idea was immediately shot down by Judy Avner, the executive director, because, she said, it would be too costly. I pointed out, to no avail, that were a group facilitator to do something truly out of line somewhere down the road, not only would group members suffer, but, when it came to light that BIANYS willfully chose not to run background checks on group facilitators, things would be far more costly.

Enough on this – for now.

Those of you who know me and know my own struggles with my brain injury and PTSD will be happy to know I am getting out of the house more than I was a few months ago. I am, like you are, a work in progress.

It has been good writing this rather rambling missive to you all. I wish I could truly tell my regular readers how very grateful I am to you, and how humbling it is for me to know you read my writing on a regular basis. To those passing by, thank you for the visit. And to all of you, I hope life is treating you well, and always, always, remember to live.

And yes, I’ll be back.

Moving….Again

The writing on the wall says I  need to move by next November; current realities make this so. Where am I hoping to move to? Western Massachusetts, southern Vermont, or somewhere in New York not too fare from the Massachusetts border. Requirements? That wherever I move is quiet and embraced by nature, doesn’t mind my dogs, and is a place I can afford on disability with whatever subsides may be available.

One of my current tasks is to learn all I can about what kind of help is available in Massachusetts and Vermont for folks with a disability.

I do not want an apartment and am instead looking for a cottage or bungalow. If could inflict a must on the next abode, it would be the presence of a fireplace or woodstove. I have found an unexpected benefit in the presence of a woodstove where I am now; it helps me out-battle agoraphobia. I collect wood and kindling and once I’m out am taking walks. This has done wonders for my health, my physical condition and, not incidentally, helps with anxiety.

I can tell you that having to move is emotionally grueling and, well, exhausting.