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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.


Virginia S. Wood, PsyD said...

I am so sorry.

I am grieving the loss of my husband of 41 years, and was just thinking this morning about my mother warning me when I was a young teen that no one would ever want me because of my disability. She wasn't being mean, she was trying to make me 'get it' that I had to get serious about my studies and a profession. But it cut me to my heart. And so I was thinking also this morning about how grateful I am that he did want me, and never stopped wanting me.

And the loneliness is palpable. Even though I do have friends. I went out three times this week (twice to work, once socially) and had people over Wednesday. And yet.

The house is empty, colder and darker somehow. My particular disability has aftereffects that are progressive, and it is getting more and more difficult for me to get out. The non-enforcement of ADA rules and regs, as you frequently point out, does not help. Simple stuff, like the ice-cream parlor owner on the corner putting out sidewalk tables and chairs so you can't get from the curb cut to his front door. And leaving them there even after I pointed this out. Accessing medical care can only get more difficult, and it's already hard. And so I am at some risk of becoming isolated out here in my little house in the 'burbs.

Which is a long-winded way of saying I think I get it, I really do. I think what you feel must be way more severe because you have given up. And I am sorry.

william Peace said...


I am sorry to learn your husband died. My Dad died years ago and I still mourn his death. Mourning the loss of a family member is a life long process. What changed for me was the intensity of grief. I wish you well as you move on with life.

We can fill our life with friends and work but I am learning that takes one only so far. Add in frequent negative social interaction disability of any stripe generates and loneliness is acute. I have not given up on myself, work or my writing. These are the best parts of life. I have given up hope my presence will some day be routine and access the norm. I do not think I will ever witness a social demand the ADA be enforced in large and small ways. Your example about the ice cream parlor is a perfect example. I have given up on society. I live in a world that is hostile and I see no reason to subject myself to abuse. I will relentlessly move forward. I will write and teach and advocate. I will do this alone because I am weary of rude people who think my life is not worth living. And yes, you do get it.

Iris said...

I feel like this right now.

I keep losing friends and I feel like I'll always be alone.

For what it's worth, at least your words make other people in similar situations feel less alone.

Mary-Anne said...

I am somewhere on the boundary between able bodied and disabled. I can walk about half a block before needing to rest. As a very fat person, I deal with extreme levels of hostility from strangers, my family, and my doctors. My beloved is para.

There have been times in my past when I was in better physical shape, but extremely, almost suicidally lonely. At one time I made myself go out and take courses, do volunteer work, do religion, and generally be with other people in situations that were structured enough that everyone knew what to expect. As a natural hermit, this was hard, but it helped me.

While I accept that the loneliness of being paralyzed is different from my experience, I would hope that some of the same ideas would work.

I have an atheist friend who is involved in Oasis, an organization which provides the social parts of religious community without requiring faith, just in case doing religion as such does not appeal. If people who wanted to pray for me were as abusive as was described, I might find atheism more attractive.

I assume that you all already know about online spinal cord injury such as: apparalyzed and carecure and wheelchairdriver and plegia and and the local chapters of, just in case online community is more your thing. I have been active in all these and more since my beloved became para.

My equivalent when lonely was, a fat person civil rights group, and, a group for women in technology.

william Peace said...

Mary-Anne, What an interesting comment. Thank you. Loneliness and disability go hand in hand. My loneliness is not greater or lesser than what others experience. Disability and loneliness is merely just different from what others experience. I have been to the online communities you identified. They are just not my thing. I did however love the idea of an oasis of like minded others. I have no idea how to create such a group. You have given me something worth thinking about.