Essays plus more for the mind and spirit

Anatomy of an Illness, Part 7

There is little real joy in my life. There is only illness, sadness, anger, and loss, a tremendous amount of loss starting with my childhood, which I lost very early on to physical, emotional, and sexual abuse.  I know that loss is a part of life and normal, but my loss is extreme and quite abnormal. I learned to survive and fight for an identity from a very early age.  There was no raison d’etre for me. There was no safety in my family’s home.  My brother, because our parents saw to it that we hated each other being the consummate narcissists that they were and pitted us against each other, beat the shit out of me and when I would go to my mother bruised and bleeding, rather than comforting me and chastising my brother and punishing him, she would ask me with venom in her voice what I did to deserve it. She would also feed me and feed me until she had to buy my clothes in the “husky” department, and then she would say, “get out of my sight you fat, disgusting pig. You make me want to vomit.”  My father sexually abused me, making me have sex with him and he would slip me $5.00 which was a great deal of money to me in the 1960’s, and tell me not to tell my mother, that it was a secret just “between us men”.  Understand that I was an eleven-year-old “man” even though in reality I was just a boy. The thing that drove me crazy is that I enjoyed it and I knew it was wrong. It screwed up my relationship with money well into my adult life. Living with Jerry has changed that as he teaches me how to handle it sanely. There was a tremendous amount of cognitive dissonance for me in my childhood and adolescence, knowing my relationship with my father was wrong but enjoying it at the same time. I hated myself all the way into my late adolescence because I knew from the age of five that I am Gay and I instinctively knew that I had to hide that secret at all costs, that it was a matter of life and death. 

 No one told me that being Gay was wrong. My parents never sat me down to tell me that attraction to another man was “disgusting” or “sinful”, but somehow I knew that I was both of those things and that I was a pariah in the worst sense of the word. It was not until 1964 when I got to Oberlin College that I could take my life back and not have to live in my sexual fantasies as I had done right up until I got to Oberlin. In my adolescence my lovers were literary characters. My brother was a voracious reader of avant-garde literature and very precocious. Many of his books were “off color” such as Henry Miller’s Tropic of Cancer and Tropic of Capricorn, James Baldwin’s Giovanni’s Room, William S. Burroughs Naked Lunch, an anthology entitled The History of Pornography that quoted famous pornographic authors such as Le Comte Donatien de Sade (he was not a Marquis, a title usually given to him), and the works of Jean Genet such as Our Lady of the Flowers and Querelle. Giovanni the beautiful Italian waiter in the Baldwin novel was one of my most powerful of my fantasy lovers. The others were the insane sex addict in the Burroughs novel and the prisoner and the sailor in the Genet books. I loved the work of de Sade, which may have contributed to my love of kinky sex and I truly loved Giovanni. I masturbated like a madman three to four times a day with images and feelings inside me of and for all those beautiful men. I engaged in anal sex with myself using whatever I could get my hands on that would penetrate me, and, oddly, that included the necks of Chianti bottles which my parents collected.  I used practically my entire hand as well. Such was the way I escaped the abuse and terror of my childhood. I lived in my fantasies and gave myself all the physical and emotional love that I was not getting from my monstrous family. All my parent’s friends thought we were the perfect family. I knew differently.

 High school was equally abusive with me getting punched on an almost daily basis in the stairwells during change of classes, with my attackers calling me “faggot” and “fudge packer”.  In gym class the teacher would have the class play dodge ball, and I was always, invariably, the one who had to dodge the ball, which was thrown at me across the gym by all the other boys. Because I was so fat, I could not dodge the ball very well and was invariably, painfully pummeled by the heavy ball. The other boys in class took great pleasure in doing this to me. I always made sure that gym class was the last period of the day so that I would be in the locker when the swim team and wrestling team would be in there changing into their Speedos and singlets for intramural, after school sports. I showered with them and surreptitiously watched them with great desire. It was a very emotionally sick time for me. The loss of my childhood was my first and perhaps most painful loss in my life.

 It was not until I got to Oberlin where my fantasies could become reality, and with my work with an extraordinary psychotherapist, that my self-loathing became a thing of the past and I busted down the door of my dark, terrifying closet like gangbusters. It was a Quaker Puffed Wheat shot from cannons thing. From that moment on I have never been back in my closet and have made sure ever since then that I have been in everyone’s face as a Queerman simply by being authentic to myself. Because my therapist was really involved with the work of Evelyn Hooker whom he idolized (she got the DSM III to remove homosexuality from being a mental illness and perversion. She said that her address to the APA regarding here research was the greatest day of her life.), he taught me to love myself and take great pride in being Gay.  He showed me that I had great gifts to give the world because I had to survive in a thoroughly hostile environment, and he explained to me that he did not have those gifts because he never had to look inside himself to learn how to survive.  He said as a straight man, the world was made for him, whereas my world was taboo and that learning to live in that world gave me insights into myself that he could never have. He told me that I was a great survivor and that I should, by all rights, be dead from suicide. His name was John Thompson, and John and I became very close friends. There was a mutual respect for each other, which I still treasure today.  I believe that John is now dead. I lost contact with him many years ago, but we kept in touch long after I graduated from Oberlin.

 So, my childhood was the first loss of my life. The other biggest loss of my life is my life in the world of HIV/AIDS. I lost over 200 friends, colleagues, and lovers, and worst of all, I have lost my own life. AIDS made me lose my career as a concert harpsichordist.  I was too sick to continue the stress and exhaustion of travelling on tour as well as the stress of the concerts themselves. The loss began in 1995 when I had my first opportunistic infection and was diagnosed with full-blown AIDS. I spent the first seven years of my illness in the hospital in Unit 371, the AIDS unit in Advocate Illinois Masonic hospital. The unit no longer exists; there is no need for it anymore .I was in and out for about half that time with infection after infection including Kaposi’s Sarcoma. After those first seven years, I continued carrying on my career, but later starting in 2005, I began to get sick again and finally had to relinquish my career. This was a great loss for me. I began my study of music at the age of five, the age when I realized that I loved men, which is a really synchronous thing. I was groomed for a concert career as a pianist, but I heard my first harpsichord also at the age of five when my parents bought me a child’s recording called “Said the Piano to the Harpsichord” and I immediately fell in love with the sound of that exquisite instrument. I knew later in my adolescence that I wanted to be a harpsichordist and not a pianist, but I didn’t find my first harpsichord until I got to Oberlin where there was a harpsichord in a practice room.  I sat down to it, played it very badly, but knew that I had to change my major from piano performance to Music History so that I could take harpsichord lessons. There was no harpsichord major yet back then in the mid 1960’s. I had to go to London to Trinity College of Music to study with a great harpsichordist there.  I stayed for two years and came back to Oberlin to finish my degree, and stayed on teaching harpsichord during the second semester of my graduating year 1968, until I went to graduate school to Northwestern University because I could be both a Musicology major and study harpsichord with my greatest teacher Ms. Dorothy Lane who died from cancer many years ago. I began my concert career in 1972 and continued it until I was forced to give it up in 2005. That was a most painful loss for me. It was the center of my life and AIDS forced me to end that part of my life. I continued to teach until 2010, however, on the faculty of the DePaul University School of Music and privately out of my own home. Then when the constancy of infections took over my life, I had to give up my teaching as well. That was yet another loss.

 During the 1980’s the worst loss of my life occurred. My entire Queer family of men died one by one. There were seven of us including me. We were not only the best of friends with whom we spent all our time; we were also lovers for each other. As I said in Part 5 it was Queer utopia with our love making with each other and with no jealousy of any kind. Each one fell to the scourge, and I always, in my concerts, played a “Tombeau” in their memory.  Tombeaux are memorial pieces from 17th century France which were written for great people who fell from life to death.  “Tombeau” comes from the French verb “tomber”, which means, “to fall”.  They are exquisite pieces and I had to program one of them in each concert in memory of my beloved family of choice. It was a terrible loss for me, and I still grieve for them constantly. Often I cry with the pain of it. AIDS is the most terrible thing to hit humanity, and I have to live with it every day of my life.

 There is a terrible misconception about AIDS, which is that it is over. It is certainly not over for me. I live with it every day of my life. In 2010 I was in the hospital every other month with chronic bronchitis and pneumonias. Because of the incessant bronchitis, I was diagnosed with COPD, which I suffer from on a regular basis. I have been septic four times in the past five years, and I get various infections also on a regular basis and have to be hospitalized with each one. Since May, I have been hospitalized every other month again. The last infection caused me to have part of a toe amputated, because the distal bone was shattered into splinters and I couldn’t feel it because of my peripheral neuropathy in my legs and feet, which is severe. I have no surface sensation from my knees on down in both legs, they are completely numb and I have no reflexes. but I have the most excruciating pain deep in my feet. It feels like burning hot coals sewn into my feet while being stung by 1000 wasps. I wear 225 mcg. of transdermal Fentanyl patches to help alleviate the pain and sometimes there is still breakthrough pain when I have to take a large quantity of hydrocodone to alleviate it. I must have banged my foot against something and broke the bone and created a wound, which got infected which I never felt. Then, one day I noticed blood and a discharge on my toe and was running a fever. Jerry, my spouse, and I went to the ER immediately where they didn’t even wait until I got to my room to hang the antibiotics when admitted, but hung a double dose of Vancomycin which dripped into me IV over ninety minutes right in the ER. I was admitted and was given both Vanco and Levoquin for a week until the infection was defeated. It required the amputation, however. That is another loss for me. Now the neuropathy is spreading to my hands, which are becoming numb.

 The latest set back is severe edema in my legs to the point of having to split my jeans to get them over my CROW walker, which doesn’t close because my calves are so big. The CROW Walker is a heavy, black plastic boot in two pieces which fit together and which counter my Charcot Foot so that I can walk. The Charcot Foot is a condition from the neuropathy wherein all the nerves in my foot died including those in my bones softening them so that they all fractured and knitted incorrectly giving me a deformed foot. Three weeks ago I developed severe edema in both my legs, so bad that I had to split my jeans at the seam in order to fit them over the CROW Walker which would fit together properly. I went to the ER again on the advice of my doctor. He thought it may be a heart problem, but after an EKG and a huge blood draw nothing showed up, so we don’t know what is causing the edema. It feels as if the skin on my calves is being stretched beyond its capacity and they have turned bright red. It is just another mystery in my journey with AIDS. My depression is terrible because of all my illness and as I wrote in Part 5, I have had to go back into psychotherapy after three years of being without it.

 There is a powerful connection between my illness and all the loss in my life because of it and my drug addiction. The illness makes me want to use again in order to escape the pain that is physical, emotional, and spiritual. I won’t do that of course, because I know that if I use again it will kill me. My recovery program is strong and I have a great support network with my brother addicts in recovery who take care of me beautifully because they understand the connection between my illness and my addiction. My therapist has a great grasp of 12-Step recovery and understands my dilemma well. He is very gifted, empathic, and quite brilliant. We are very close because we share something, which is all the loss of people to AIDS during the 1980’s and 90’s. He, too, lost a tremendous number of people in his life so he understands my grief and pain quite powerfully. I first went to him nine years ago after I got out of rehab and worked with him for six years when I “graduated”. It has been three years since that time and now I am back there again working hard on my psyche and spirit trying desperately to alleviate the psychic and spiritual pain. It has been loss upon loss and today I am in despair over the truth that it is not over. There will be more as time goes on.

 Jerry and I will be moving when our lease for this apartment is up. We have to find a wheelchair accessible building with an elevator because I cannot negotiate stairs at all, and eventually I will no doubt end up in a wheelchair. I already have a terribly difficult time walking although I can still manage it. It is the neuropathy that is causing the lack of mobility. Fortunately, I can still walk but with a great deal of pain in my legs and feet. Eventually, I will have no mobility at all, and I am prepared for that contingency. I also have a difficult balance problem because of the Parkinsonism. I have to be very careful that I don’t fall. We are moving to a different neighborhood that is closer to my doctors and the hospital so that should I need to go to the hospital in an ambulance, I will go to my regular hospital where my doctor is on staff. Where we live now would require that I be taken to a different hospital that is the closest one to our apartment, and I don’t want to go there. It is a mediocre institution, with which I don’t want to deal with, and I am most comfortable and feel completely safe at St. Joseph’s. I have been there so much that all the nurses on the eleventh floor know me. The ER staff knows me by name and greets me each time I go in, although they don’t like seeing me there. It is a terrible thing that I am so well known in the hospital. In some ways it has become my second home and that is indeed tragic. My life with AIDS is so difficult that I despair over the reality of it being a permanent condition that is only going to get worse as time goes on. Fortunately, I have my beloved Jerry who sees to my needs and I have my support network of addicts in recovery. Without them I would probably be dead at my own hand. They all keep me living the best possible life I can live and I am so blessed to have them in my life. I am just waiting for the next infection and have resigned myself to living with AIDS for the rest of my life. I cannot change that. I say the 12-Step Serenity Prayer a great deal to help me cope with my life. The prayer keeps me centered.


            God, grant me the serenity to accept the things I cannot change,

            the courage to change the things I can,

            and the wisdom to know the difference.


 I work hard at acceptance, which is very difficult for me. My therapist says that difficulty in acceptance is a basic part of my personality because I am a fighter, having had to learn how to fight to survive from a very young age. He thinks the fighter in me is a very healthy thing indeed. Thanks be that I have such a great network of support and love and, of course, I have my beloved music, which I listen to constantly usually with my earbuds because I feel filled with the music listening that way.  I feel it deeply in my body and spirit, more than if I listen through my speakers which are very good speakers indeed, but the earbuds give me a greater connection to the music. I listen to a tremendous amount of Baroque music, being a harpsichordist, but I also listen to some of the great Romantics such as Mahler whose music is filled with a powerful pathos, which resonates deeply in my soul. He, too, was abused as a child and the pain of that is reflected in his music. I relate to it so well. My music and my support network and especially my spouse keep me alive. I am so grateful for these great gifts in my life. It all relieves the pain of all the loss with which I live, and for that I sing great songs of praise and gratitude to my God/dess, my Higher Power.

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