Search This Blog

Saturday, August 29, 2015

Loneliness Reinforced

A friend told me that I wrote quite a post yesterday. My new philosophy of life indicates that despite 40 years of progressive legislation society remains hostile to people with a disability. Access and equality is at best decades away. Given this, I am acting out of self preservation. I want to reduce emotional pain and negative social interaction as much as possible. Accordingly I go out at odd times. I often do grocery shopping at 5 or 6AM. No one is in the store. I do the same with with laundry--the laundromat attracts shall we say characters. I rarely go out on weekends. Weekends are high risk days. People abound and they usually have something to say that is far from positive. I was in my small local town this weekend and a store owner asked me if I could get a speeding ticket in my wheelchair. I just looked at him, my facial expression neutral, and said nothing. He was pleased with himself and laughing out loud (he does not know it but he lost my business).

I should know not to go to a diner on the weekend (Sunday is always a no go). But I had a yen for an egg sandwich and the local diner is pretty good. They have a one egg, thin slice of cheese and two pieces of bacon sandwich. Perfect for my limited appetite. I got there around 6:30AM, a bit later than I am comfortable with. The place was relatively empty. I see a table in an ideal location so the waitress or customers will not hit my wheelchair as they go by. With a minute of sitting down I observed three men my age drinking coffee. I can hear snippets of their conversation. They are discussing religion. The hair on the back of my neck goes up. This is trouble. I know they are going to say something given half a chance. I think I better move. I stopped myself though. I am being a bigot. I am assuming they will be trouble based on a sixth sense?  They could just be three guys who got into a religious discussion. Wrong.

I ordered my food and am reading the newspaper on my phone. The men in question have finished their food and as they walk by me the man in the center stops and they all turn to me. Oh, no. I have no where to go. I am trapped. The man says "We are going to pray for your crippled body and rotten soul.  We are going to pray for your sins and ask God not to strike you down again for you have sinned terribly". With that they got on their knees next to the table, heads down mumbling prayers". I too wanted to pray to God. I wanted to move my right leg and kick them in the balls.  They prayed for about 90 seconds, got up and walked out.

In retrospect, I wish I had taken a video with my cell phone. I have had comparable experiences a few times this year. Most incidents I can avoid but sometimes I get trapped in a Catch 22 situation like in the diner. After the men leave I contemplate my ruined appetite with the fact I already ordered food. I think for a minute and see the waitress. In a perfunctory way she says sorry and something about the men being regular customers. I say I will pay for the meal and just want to leave. She says forget about payment and gives a slightly more sincere sorry. She is a seasoned diner waitress with a deeply lined face. She has that indifferent body language of a person that has worked at diners for decades and has seen it all. There is slight smell of diner aroma mixed with cigarettes smoke that clings to her work clothing. I leave without a word and head to the laundromat. I wonder how is it that devout believers can be so cruel? Why do heavy duty Christians see me as a target of opportunity?

Let me return to my friend's line about yesterday's post. What incentive do I have to interact with the majority of the bipedal population? I am not a human being to many but the symbol of what can go wrong in life. My existence many assume is miserable. I have a very good life and simply do not want to be forced to defend it to the Christian men that verbally assaulted me. I have no doubt they were quite pleased with their actions. I am sure they think they did God's work. I know with certainty I will never go to that diner again. What took place was well out of the norm but has happened to me continually since I was paralyzed. Social interaction is regularly skewed and nothing average remains average long when I go out. Parking my car and getting my wheelchair assembled is as astounding as the Grand Canyon. I am regularly stared at. When I bike some people have stopped on a dime as I passed them on my hand cycle and yell at me to stop. In the distance I hear "I want to look at the bike". Some bikers have followed me for miles keeping a running commentary about how amazing I am. I now have a trainer and bike in my house. I do not want to be a stranger's super cripple. I am in reality an ordinary person. Yet I am barred from being ordinary.

Frankly, I have no incentive to interact with the vast majority of bipeds. Many have my lot in life already figured out. One thing is consistent. I am inferior physically and socially. I must always justify my existence and adjust myself to a world that would prefer I not exist. Life with a disability is a social death by billions of tiny paper cuts. No one wakes up in the morning and thinks I am going to be a bigot to people with a disability. But that does not make the degradation any less real. After 37 years I am done. I will trust the hair on the back of my neck. I will avoid bipeds I do not know. I will restrict myself to campus. I will be a ghost. And I must confess I yearn for a community of like minded people who get it. I am not a bigot. Lots of people who are bipedal get it. I will embrace all those that see what I and others with a disability can do. For that is my first thought when exposed to others with a disability. I see bad asses that have survived a hostile world and adapted and thrived. I can still thrive I choose to do so alone.

Friday, August 28, 2015

Loneliness is in My Bones

Before my brother Jim died he told me "I wish you could be a bit happier". He really meant this. He did indeed want me to be happy. Many things make me happy but deep down I remain lonely. There is an ache in my bones that is ever present. No bipedal person gets it. No one who has a  typical body gets it.  Oh, many typical people try to understand but they can't. You see my people have no home. My people get beaten, molested, institutionalized, isolated, and demeaned. Stigma clings to our bodies as though we are bathed daily in super glue. Accessing health care is difficult and dangerous. Many have been offered assistance to die rather receive treatment to live. We are scoffed at when we talk about identity and disability. The ADA and 40 years of progressive legislation has put the law on our side yet there is no mandate to enforce it. When I explain the ADA is civil rights legislation people look at me as though I am crazy. I am harassed on a regular basis. I have been screamed at and spit on. I have been called the antiChrist. Me being lonely is an understatement. Think more tortured soul.

I went through the medical mill as a child. Pediatric neurology was in its infancy. The field itself was less than two years old when I presented alarming and life threatening symptoms. Cumulatively, I spent years on wards of 16 morbidly sick kids. I have been paralyzed for 37 years. I have seen the dark side of American society. I have seen the worst parts of the best buildings. I have been refused service in restaurants and am routinely seated at the cripple table when I go out to eat.  The message is unrelenting and impossible to escape: my presence is an odious reminder of how life can go wrong. Disability is very bad. Disability is expensive. I am special. We Americans hate special people. Being special is an unfair advantage. Handicapped parking is a battle zone. Housing, mass transportation, and employment force people with a disability to live on the razor edge of poverty and homelessness. Section 8 housing has a waiting list of many years. In Syracuse 95% of housing is inaccessible. I fear my landlord. They know I have nowhere to go. My loneliness is heartfelt and driven by a hostile world.

I have nightmares. I cry a lot. My brother Jim is dead. My father, the rock of my life, has been dead many years. I look at his picture daily and mourn. That mourning is never ending. My heart has been broken repeatedly. I have lost friendships I cherished. I loved two women in my life. Both broke my heart. I have a body that is freakish. Thanks to strangers I am well aware of this fact as they freely comment on my body. Life as a cripple is hard. And I am lucky! I get this too. I am indeed lucky to be alive. I never imagined being an adult much less a middle aged man living alone. I am lucky. I am well educated and live in a semi accessible rental. I love my work--I just don't have enough of it. Yes, I am lucky and state this without an inkling of irony. I am a survivor. I will relentlessly move forward. Head down I will soldier on no matter how bad things get. I do have a request though. Do not tell me I am lucky. Never ever do this. My pain is both psychic and physical. I was up all night. My hip burned like a red hot poker was on it making sleep impossible. The pain made me nostalgic. The good old days for me ended for me at age 9.

I read an essay repeatedly last night. Lara Lazenby wrote "I am a Childhood Cancer Survivor Forty Years. It is Never Over". Link: Apparently September 4th is Childhood Cancer Awareness Day.  She wrote that cancer treatment forty years ago was archaic. It was brutal. My treatment was brutal too and it was the best medicine had to offer. Three massive surgeries on my spine and about 22 spinal taps over a period of ten years takes a toll. Like me, Lazenby has physical and emotional scars.  She wrote:

the next time you are tempted to tell a cancer survivor to “Get over it,” remember that it is never over. The side effects of childhood cancer never end. They are decades long. They creep up and blindside me. Again. And again. And again. So please get over your discomfort when cancer fighters and survivors must talk, must weep, must grieve. We are broken. Often shattered. It takes an uncertain amount of time for us to pick up the pieces of shard and rebuild our lives. Your thoughtless words only add to the emotional scars we carry. Please spend less time trying to shut us up, and more time spreading the hope because your friend, your co-worker, your family member, or the love of your life survived.
I am still here. I am surrounded by the most precious guardian angels that went before me. They are etched in my memory forever. And some day, when it is my turn to go, I will embrace them with tears and laughter. I know it.

I feel broken. I feel shattered. I am deeply flawed. I struggle with depression. I never had cancer but I sure as hell suffered as a child. I have spent much of my life in pain. I would not know how to live without pain. But what hurts the most, why I will live out the rest of my life alone, are the invectives I have been subjected to and the bigotry I have experienced. This in the marrow of my bones now.  In the last few months I have changed my entire philosophy of life without knowing it. I am weary and I have shut down. Society 1 Bad Cripple 0. If you are not in my heart already you never will be. I cannot live with additional hurt. Feeling nothing is now preferable.  I trust no one I don't already know. A man can take only so much pain. I have hit my limit.