Anatomy of an Illness. Part 10
I’m dying, slowly, indeed, but still I am at the end stages of my life.. There is no question anymore, but that I am terminally ill with Stage 4 Chronic Kidney Disease (CKD). The lab work came back and the GFR is 28. To be normal, it must be >60. Mine is very low. Everything in my life is now going to change and I have to make some very important life changing decisions regarding the course of my walk with this disease. First, of course, I will speak with my Nephrologist, to whom my Primary Care Physician referred me, and who is also my HIV doctor. Todd has never steered me wrong when it comes to referrals. He sent me to a most wonderful Cardiologist a month ago, and our work proved that my heart is incredibly strong and healthy and, therefore, not responsible for the edema throughout my body. It was so bad, I could not even wear my CROW (a black plastic orthotic boot up to my knee for Charcot Foot, a condition that comes from having severe peripheral neuropathy due to the virus and my toxic HIV meds. The neuropathy got so severe that all the nerves in my left foot died and consequently all the bones in my foot softened and broke, healing in a deformed way so that I cannot wear a shoe on my right foot ever again. The boot mobilizes the foot so that there is no further damage and there is no pain when walking.
Regarding my CKD, because my immune system is so suppressed, I am not eligible for a kidney transplant. I would have to take immune suppressing drugs in order for my body to not reject the new kidney, but I cannot take those drugs, because my immune system is already so compromised from HIV that taking post- operative transplant medication would kill me. The only recourse is to let the disease take its course, which leads ultimately to death. What is left for me is dialysis and I don’t know that I want to have my days controlled by the procedure, which requires three hours a day, three days a week in a dialysis center. My friends who I trust implicitly tell me that I can try dialysis and if I am uncomfortable with it I can always stop, but then what happens to the fistula which has to be put in my wrist in order to have access to both a vein and an artery? How will it affect the quality of my life? Is there an exposed tube like with a central line or a PIC line? One can only have dialysis for a finite amount of time, which I know can be years, but I don’t know that I am ready for that kind of commitment. My psychiatrist who monitors my psych meds tells me that I nap so much during the day, I can just as easily nap during the dialysis treatment, or I can listen to my wonderful classical music and the Kirtan of Krishna Das, or I can watch TV (I’m told they are available for each reclining chair). Both of those things I do at home every day anyway, so why not at a dialysis center? I suppose he is right, but it seems so invasive and intrusive, and I don’t know that I am ready for that. My Nephrologist says that people don’t die from kidney disease anymore, but if I cannot have a transplant, will I continue to live? I don’t think so. I believe that would be similar to having my life controlled by chemotherapy, which it was for three years from 1997-2000 for Kaposi’s Sarcoma (an AIDS-related cancer), and I swore to myself that I would never put myself through that again. The chemo sickness almost killed me twice with two different chemo agents (they tried four different ones over the course of those three years, because the side effects from each were impossible to live with). Both of those hospitalizations were spent in the ICU for a week before I was sent own to my own room for another seven days. So, I have much to think about over the course of the next few months. As it stands now, I don’t need dialysis, but my doctor says that eventually I will have to do it in order to stay alive, but am I really living when my life is controlled by the dialysis? I really want to think about my theology and spirituality around death and dying and come to a place of complete faith that we do, indeed, have a soul that leaves this corporeal body and goes back to the Source, for me, the Mother, Durga. May She shower me with Her love and devotion. That’s a lot to ponder.
Needless to say, since my diagnosis, I have been dealing with my mortality and all the issues that brings up. The grieving is something terrible, and the rage that goes with that is equally terrible. I grieve for the life that is no more, my past wonderful, dramatic, musical, majickal, crazy life. I am enraged that AIDS is killing me before my naturally appointed time. I will be 68 in a month and a half, and I have the working body of an 80-year-old. I have not felt these emotions about my life and death since the 1990’s during the Death Years when death was imminent. It was so for countless thousands of Queermen, and it was supposed to be so for me as well. I triumphed over the will of the Death Crone who certainly wanted to take me to Herself during my 10-day coma between 1995-1996 when I had my first opportunistic infection—Herpes Simplex Encephalopathy. I did not go with Her, however. It was not my time and, like Orpheus, I returned from Hades back to the surface of the Earth. Orpheus who, upon his return to the surface, was torn apart by the Eumenides. Perhaps now the Eumenides are tearing me apart through my kidney disease and my Parkinsonism, not to mention the peripheral neuropathy, which cripples me more often than not. Up until today, I have not been able to go outside without Jerry to hold on to or otherwise I would fall. This past winter was especially treacherous with all the snow and ice in Chicago. Before I got my walker today, I could not even stand in one spot on a street corner waiting for the light to change without losing my balance and falling over with Jerry having to hold me up. I say up until today, because today my Rolator/Transport Chair arrived (the Rolls Royce of walkers) and I used it to go to my cornea specialist. It was quite miraculous. I can walk again with stability and I don’t need Jerry to keep my upright. It will allow me to take a bus without the danger of falling when I get on or off. The walker has given me a great deal of freedom and independence, which I did not have prior to getting it. In fact, I was so dependent upon Jerry and could not go anywhere without him, that I was reaching a point of despair over it. It’s very hard for me to be dependent on someone for nearly everything, and I thought it would be that way for the remainder of my life. I felt like an invalid, a shut-in, but now I feel as if I have gotten a good part of my life back, and I am filled with gratitude.
Even though I have so much for which to be grateful, it has been really difficult to feel it these past months. Today, gratitude is almost overwhelming, and perhaps now I will feel gratitude for all the blessings in my life. I have so many people who are dear friends in recovery and not who love me and care about me and for me. I am writing this blog. That’s a blessing. I am grateful to be able to say that I can still write. I am grateful to be able to feel grateful. I am grateful to have a partner who loves me beyond the beyond and who does whatever is necessary to see to my needs. He is not doing that out of some neurotic need to feel needed so that he can feel good about himself. He is doing it out of a deep and abiding love that is founded on our spiritual lives together. We are both in recovery and although I am more eclectic in my spirituality (his is more generic and 12-step) we are, at the core, so spiritually similar and connected that we speak a similar spiritual language. Mine is centered in the Divine Feminine, the Mother, and his is not, but that doesn’t matter, really. What matters to each of us is that we love and respect each other as Children of the Universe, me as a Child of the Mother, Ma Durga, who is also an aspect of the Death Crone, whom I met in 1996 when I died and came back. My life has been filled with wonder, passion, drama of the best kind, and intense majick. I have had a good life, and now I have entered a spiritual realm when my body is shutting down and I will die when it is finished doing that. Who knows when, but the Parkinsonism and CKD are killing me, and the peripheral neuropthy is crippling me. And yet, for the most part I am happy and content and can ask for nothing more.
Having the health issues that I do have makes me think a great deal about death and the afterlife and whether or not we have a thing called a soul? If we do, what happens to it when the corporeal body leaves this plane? What do I make of the church, synagogue, and mosque’s teachings regarding what happens to LGBT people when we die. Their teachings certainly say that we are destined for an eternity of pain and damnation, but it is vital that we counter those evil, hateful teachings from their own bigotries and the Texts of Terror from their Scriptures with self-love rather than self-hate and get to the truth about a loving deity who only loves us unconditionally for being Queer. Where do our souls, if we have them, go when we leave this plane? I remember when, during the Death Years of the AIDS War, dying Queermen would come to me for spiritual direction (I hold an M. Div.), and the question that was invariably forefront in their minds was “what will happen to me when I die?” I had no answers for them, only compassion and love and pointed questions to help them get to a place of contentment, at least. When facing our mortality, we as LGBT people will more than likely have those old messages from the pulpit haunt us until the final moments. We must learn that as LGBT people we are a good and righteous people, a people of compassion and altruism, of community and sexual/gender fluidity as the Divine had long ago declared from the very beginning of our species. We must learn that we are truly loved not in spite of being Gay, but exactly because we are Gay, because we live in Divine Justice, and no one person or religious institution can take that away from us. My work as a spiritual director was to get those beautiful young Gaymen to a place of peace and serenity as their bodies, our bodies, come to their final end. We must, all of us, if we are to survive as a people, know in our heart of hearts that our bodies and our beautiful souls are exactly as they are supposed to be, as planned by the Creator, and the Crestor dances with sheer and utter joy as we learn to spiritually love that which She created.
Jerry I are moving on April 26th to an apartment in Lincoln Park in Chicago so that I can be right near my many doctors who are all in the same professional building. Where we are moving to a building that is also handicap accessible, which our current building is not. The building, built in 1925 with a lot character, is only one block from all my doctors. It is also two blocks from my hospital so that when I have to go to the ER, as I often do, it will be right there. Where we live now requires that I take a cab to all my appointments and to the ER. Living near the offices will save me over $1500 a year in cab fares. We are so blessed to have found an apartment in the neighborhood we wanted, in the building we waned, and the apartment we wanted. That’s a blessing, indeed. All in all, life is good.