Essays plus more for the mind and spirit

Anatomy of an Illness, Part 13

It is 2:30 AM and I am wide-awake after two and a half hours of sleep. My sleep cycle is so impacted by my meds and my illnesses. I will remain at the computer writing for another couple of hours and I will then take a long nap on the sofa at around 4:30 for an hour or an hour and a half. This time of night is wonderfully quiet and allows me to be with my thoughts, away from the daily noise in my brain when the sun is out. Nighttime just quiets me down, and puts me in a place of serenity and peace. The daily noise in my head, noise from the body pain and imbalance from Parkinsonism and the pain from neuropathy in my feet lose their edge and I have some respite from it. It is during this quiet nighttime that I write my blog. I wrote my book Thoughts of a Tribal Elder only at night and it took me nine years to write the book. I guess I do my best writing at night, at least according to all of you who have contacted me by leaving comments on my blog and according to the reviews some of which are on the book’s website. You can get to the blog from the book site; click “blog” on the menu. http://queerwitness.com or go directly to the blog site, https://queerwitness.wordpress.com

Well… my 68th birthday has come and gone, and what a birthday it was! Jay Rock and Russell Rahn, my two very best friends from high school, and with whom I am still deeply connected came to Chicago to celebrate my birthday. We ate in fabulous restaurants, such as I would never go to because of the expense. We started with brunch on Wednesday. Then on Thursday we went on the Chicago Architectural Foundation boat tour of the beautiful Chicago architecture. That evening we ate mounds of Sushi at a fine Japanese restaurant near my apartment. Then on Friday we went to The Art Institute for about four hours to look at the Impressionists like Monet and Manet and VavGogh and of course “Le Grand Jatte” by Seurat. The original is in the Art Institute and it is very beautiful, but I love Monet more. I saw the Hay Stacks and Big Bens, both series being there. I saw my most favorite Monet “Morning on the Seine at Giverney”. Jay and Russ pushed me in a wheelchair for the full four hours. This was followed by a lavish, extraordinary dinner at Russian Tea Time where we ate exquisite Russian cuisine. On Saturday, I spent the day sleeping and just taking it really easy and they came around 5:30 to Jerry’s and my home for dinner, which was lobster tails and asparagus followed by Jerry’s Almond Crepes and that closed down my birthday weekend. It was indeed the best birthday I have ever had in my 68 years of life. It was filled with such love between the three of us, and their care of me was quite moving. There was so much laughter, the kind I rarely experience. It was the laughter that can only happen among intimate friends. I shed tears of joy and gratitude for the depth of their love for me. I managed to pace myself well so that no one day had too much activity in order to rest between events.

This is the 50th anniversary of my graduating class from Mt. Lebanon High School in Pittsburgh, PA, and the three of us planned to go to the reunion if for no other reason than to look and see what happened to all those horrible people, many of whom, in fact, grew up to be truly delightful, wonderful, and compassionate people, people with a heart, people who truly want to be my friend, to support and care about me and for me, people who, in high school, had no idea I was going through such pain and agony. Consistently, they said that had they known that I was struggling so much, they would have certainly supported me in any way they could have. Most of these compassionate people, by the way, were women. Very few men from my class had anything to say to me on the website for the reunion where much conversation is happening among the alumni. One comment I particularly remember, from an obviously straight-as-an-arrow christian[sic] male, said that I had to “come to Jesus to receive salvation”. He told me what a sinner I was, and had a ridiculous opening statement of his concern and care for me and how proud of myself I should be for having done so much with my life. Then in the next sentence he went on a tirade about me being a sinner and how I had to come to Jesus in order to be saved. It was a typical “hate the sin love the sinner” thing, which is perhaps one of the most absurd and dangerous theologies to ever come down through the history of Christianity. It allows for such atrocities against us, because it justifies those atrocities. It allows for hate crimes and hate speech. Right-wing Evangelical Christians every time they say hateful things back them up with “it’s for your own good….you need to hear this”. I remember that such was what happened to me in the ordination process in the Episcopal Church. The Commission on Ministry with which I met every month for two years said the most hateful things to me regarding my homosexuality for a large part of the ordination process, truly believing that it was for my spiritual well being, because they “loved me so much”. One month before the ordination, after seven years in the process, it was pulled out from under me, because my theology was too Queer and too focused on the body. My sermons were too Queer. I was just too Queer. They used “gay” rather than “queer”, of course. Their supposed “love” for me during the process turned into what it truly was…HATE. I know that it was really a deeply imbedded fear of “the other”, and that fear was expressed through hateful acts. There was no spiritual after care for me. They just trampled on my soul and left it bloody in the streets. It turns out (as everything does) that it was for the good, that I was not meant to be a parochial priest. In fact, I was not meant to be a Christian at all.

For a long time I was a devout Buddhist/Taoist. Eventually the Buddha part was too heady and cerebral for my spirituality. There was no Mystery to it, and I need Mystery and a deity in my life. I have kept the Taoist part of my journey because it is central to balancing my life, but I also discovered the beauty of Hinduism. It suites me so much better than did Buddhism (and certainly Christianity). There is Mystery in the Hindu tradition. It allows for my relationship with the Divine Feminine, to whom I have been devoted for decades. I worship Her as Durga, the Mother of All Things. I can sing Kirtan to Her with Krishna Das, and, because I am one whose primary language is music, it is through Kirtan and bhajan that I dance in Her presence. I have pictures of her on my blog and on the lock screens of both my iPad and iPhone. There are images of Her in this blog. There is a picture of her leaning against my 19th century carved and painted Buddha on my desk. She is very beautiful with kind eyes and emanates a power sitting on her lion or tiger. She has taken care of me from conception, although I have only come to know that in the past ten years or so. She is with me in my walk with AIDS with all its illnesses. Sometimes when I am in a dark place around my illnesses, I forget Her goodness and presence in my life from the very beginning of it. Most of the time when I am not stuck in the blackness, I feel Her compassion and love for me, and I trust that She will continue taking care of me, giving me everything I need to live until my demise, and then in Her aspect as the Death Crone. She will take me to Herself and I will be back at the Source until it is time for me to come back again. This clearly is not my last life. There is so much for me yet to learn and to grow into. That cannot be done in one lifetime. It is not time for my nirvana. There is still much work to do.

Before going to sleep tonight, Jerry and I lay naked in bed, me in his arms and my head on his shoulder and we spoke of death, particularly his. We are changing our Powers of Attorney to include a DNR (Do Not Resuscitate) for each of us in our Living Will. Jerry talked of what will happen to me should he precede me in death, and, quite frankly, that thought scares the shit out of me, not just because I don’t know who will take care of me, how I will eat, who will do the cooking, do the laundry, clean the apartment, even put on my CROW because I can’t do it anymore, etc. I can hardly walk and Jerry does all of that and gets paid by the state because he is officially my Personal Assistant. I need someone 16 hours a day. The real fear is living without him to love and to be loved by. Half of me would die with him. I bask in his love as he does mine and to not have that in my life makes me wonder how I could possibly go on living without him. He and I, although powerfully strong and spiritually independent individuals, are really one person, and my heart will be cut out if he dies before me. The conversation saddened me deeply and I cried quietly with my head on his shoulder, because I could feel just how devastated I would be If I lose him. I must trust that the Mother will take care of me in all ways and always as She has done throughout my life and that She will provide for all my needs, probably in very surprising and unlooked for ways. When I trust, I am calm and all my anxiety just goes away, but, as I said, when I am in a dark place I can lose that trust. We also talked about arranging for cremation. Jerry is 74 and I am 68 with a terminal disease that is going to take its time to come to fruition, and it is time to think about these end-of-life things, especially for me because I don’t have any idea how long I will continue to live with Chronic Kidney Disease. I can’t have a transplant because I cannot take the immune suppressing drugs needed to keep my body from rejecting the new organ. My immune system is already so suppressed and compromised that those drugs necessary for a transplant are out of the question. They themselves will kill me, so either way this is terminal. I’m OK with that, although should I predecease Jerry, I am terribly worried about what will become of him. He says he will be fine, because he absolutely trusts his Higher Power in all things and that he will be provided for. I’m afraid that sometimes my faith is not as strong as his.

So, I have much to think about. I am certainly going to talk with my therapist today about this whole death scenario. I obsess over it and I know that doing so is very unhealthy. It is quite enough that I am unhealthy in my body; I don’t need to be unhealthy in my mind as well. Every day I find myself running the gamut of emotions and am sometimes I am overwhelmed with sadness and grief, but I am sober today, in recovery for 9.5 years, not having used drugs of any kind since February 4, 2005, and today I can say that I can feel my feelings, my emotions. Today I don’t have to use drugs to escape my painful feelings and memories. I am so grateful to be clean and sober, to be able to feel, to laugh again (which I didn’t do when I was using), to grieve profusely all the loss and tragedy in my life, but always Durga Ma is just waiting for me to come to Her and lean on Her and trust…just trust. Today with this trust I can honestly say that everything will work out. It always does and it will continue to do so.

Jai Ma!!



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