Anatomy of an Illness, Part 15
This is Friday morning September 26 exactly 3:00 AM and I feel really awful. I have chills but when I put on my bathrobe, I begin to sweat and my body pain is really terrible. I have small electric shocks that go through my brain, which I can hear in my inner ear. It has been happening since I came out of my coma in 1996 er with severe brain damage from the trauma of the HSV Encephalyhtis, but they have gotten so much worse in the past few months. Sometimes, they are so intense, that I feel as if I’m going to pass out from the shocks. I’m hoping that my new neurologist whom I will be seeing for the first time on October 27 is as good as her credentials say she is. I saw one neurologist for nearly 10 years and we were very close. He diagnosed my Parkinsonism (Secondary Parkinsonism, to be exact)10 years ago. Dr. Bartt moved to Denver and I had to find a new neurologist. Dr. Bartt (Russell –with their permission, I call all my doctors by the first names) told me my best bet was to see one of his finest residents and that she would take great care of me. I saw her for the two years of her residency, but now she is finished and has gone on to become a fellow at the University of Chicago Hospitals, and I will have to see another resident for the next two years, and then the next two years after that with yet another resident. I really don’t want to have to keep changing neurologists every two years, and have a different Attending Physician every time I see the resident. My Parkinsonism has escalated incredibly rapidly. I need a neurologist with whom I can have a long-term relationship, one who will be there for me, and who knows my entire history, and with whom I can work for a very long time.
I’m going to Northwestern Memorial Hospital’s neurology department. I will be seeing the director of the department who works with Parkinson’s, Parkinsonism, sleep disorders, and movement disorders. I liked her credentials very much, and thought that if she’s the director of the department she must be good. She’s also a full professor on the faculty at University Hospital. Her credentials are rather impeccable. When I was looking around for a neurologist at Northwestern (NMH), I looked at the specialty of each neurologist on staff and thought that if she were the director of the program, she must be good, but I never thought to get an appointment with her. When I called to make an appointment, however, I was told that she was indeed taking new patients but couldn’t see me until October 27. I made the appointment immediately. My Parkinsonism is quite bad, but I’m going to live with it until I get to see her in late October. I’m only on two medications Sinemet and Amantadine, those being the two medications recommended to me by the resident, but the first one does nothing and I don’t know what the second one is supposed to do. When I looked at the paperwork regarding my medical history and medications in order to be ready for my first appointment with Dr. Simuni, I noticed when I filled out the intake sheets that one of them talked about what medications are available for Parkinsonism. Why I wasn’t given some of those medications, I have no idea, except that the resident that I had, who was really quite wonderful, never mentioned them to me, so as far as I knew I was left with only those two medications. She said she didn’t want to add any more because I take approximately 15 medications twice a day, sometimes with two tablets per dose. It’s a shit load of meds, but they keep me alive and they keep me quite sane (I take lots of psych meds to counter the psychological effects of full-blown AIDS including generalized anxiety disorder, generalized depression and on top of that I am bipolar). Between all my meds that are taken at specific times and the ones that I take as needed, she didn’t want to add more medications to my med list, because I’m a walking pharmacy.
Along with the 225 µg of Fentanyl, I use marijuana in various forms (hard candy with a very high CBD count and chocolate fudge with a high THC count) to counteract the pain throughout my body and particularly from the neuropathy in my feet, which has now gone into my hands probably because of the CKD, which, in late Stage 4 begins in the hands. I know that it is not HIV neuropathy because I have been living with it in my feet since 1991. There is no reason that it should suddenly appear in my hands after 23 years in 2014, unless it is because I have gone heavily into Stage 4, which, by itself, produces neuropathy of the hands. If my readers are wondering how I am typing this with terrible neuropathy in my fingers, which makes them both numb and painful, you should know that I cannot type anymore at all. The pain in my fingers is severe and I can’t feel the keys. I misspell words now constantly because my fingers slip off the keys where sometimes I even type between two keys and sometimes I don’t even know where the keys are anymore at all because I get so confused. I used to type 150 words per minute. Now I’m lucky if I can type 5 WPM so, I use Dragon for Mac, which allows me to speak my text and it automatically types what I say.
I am going to Physical Therapy tomorrow for the last session. I am graduating. My PT, Greg, was remarkable and healed my torn left rotator cuff in about 8 weeks. It took 5.5 months of Physical Therapy a year ago from a fall I had on the sidewalk to repair my right rotator cuff. This time for the left it only took two months for the rotator cuff to heal. I will not need surgery, which is a great blessing. My therapist is wonderful, not only in his knowledge about the use of machines for strengthening the muscles (my deltoids were locked up and incredibly weak), but also in manual massage work and traction that has loosened up my joint to the point of being able to raise my arm now over my head with no pain and lift a gallon of milk pain free as well, whereas before PT I could only lift my arm about 5 inches away from my body, was not able to shower by myself, could not even lift a glass beer mug filled with iced tea. The sessions are exhausting but also exhilarating. My shoulder is very tired after the session as is my entire body generally, but I feel so alive afterward that the exhaustion and pain from the workout don’t bother me at all. I can see tremendous progress, and that’s very encouraging. I usually sleep for the entire rest of the day on PT days and often throughout the day following. The exhaustion is debilitating. I worked really hard in PT, and I am very proud of my progress, as is my therapist and the other therapists in the practice, all of whom were in aw e regarding my progress and hhealing is such a relatively short amount of time.
My Hoveround power wheelchair arrived approximately 6 weeks ago. It’s more difficult to learn to drive than a car. I feel like I’m 16 years old with a learner’s permit, except I’m 68 and have no learners permit. I feel as if I should wear a sign that says, “Student driver–beware”. I can take it out onto the streets quite easily, but getting it through doorways and around tight corners is nearly impossible and I have to practice it a great deal. The elevators are particularly difficult, because the elevator doors don’t stay open very long when you get on the elevator. They close within about a minute and a half after arriving at the floor, and right now it takes me about 5 to 6 minutes to get into the elevator as well as to get out of it because I have to go out backwards, and I am having a terribly difficult time doing that. Someone has to come with me into the elevator in order to hold the “door open” button both when getting on and getting off the elevator. Because the elevator is so small, navigating it is very tricky, but I intend to master it no matter how long it takes. I have not had the nerve to t ry public transportation yet. The spaces is small fort the chair and there is a ramp to get into the bus, and I am afraid that I will driva off the ramp, because I won’t be able to keep the chair in a straight line. We’re going out on the street with the chair this afternoon, my brother, Jerry, and myself, to take the chair into the park and the three of us will have a lovely walk outside together in the warmth of an early September Saturday. My most wonderful Primary Care Physician, Todd, suggested that because of my history in the Queer community, and because I was present at the Stonewall Rebellion and because I have outlived my death prediction by 19 years, I should call my chair “Stonewall”. For me, it is a powerfully strong word and embodies struggle and victory, which is exactly what is happening to me now. I was thinking of blinging it out with a Bedazzle kit and cutting strips of black leather to hang from the arms of the chair. It’s all very funny, I suppose, but it’s not something I will do.
The chair is enormous. I’ve never seen one this big anywhere on the streets at all except another Hoveround. Most power wheelchairs are much smaller and lower to the ground. Mine, however, looks like a dentists chair, according to my brother. The wheelbase is quite large, and the wheels are large enough that they require fenders over each wheel in order to protect them from damage. I was out with the chair a week ago, with my dear friend John Lee, and we went to the park together, sitting under a tree while he rested and I took a nap in my chair. The back of the chair reclines and is almost flat, and with the wonderful headrest l dozed off in the chair under a tree by the water of Lake Michigan.
I saw my Nephrologist last week, and he said that my creatinine level has increased by a whole point, which takes me out of the low end of Stage 4. I am right smack dab in the upper middle range of it on my way to Stage 5, at which time my doctor will probably want to put me on dialysis. This raises a whole set of important questions that I must ask myself regarding longevity and its relation to quality of life. I was on and off chemotherapy for 3 years from 1997-2000 for Kaposi’s Sarcoma (KS) One of the chemo agents was so toxic it landed me in the ICU for 2 weeks dying. Of course I pulled through that terrible chemo sickness, but I remained in generalized chemo sickness throughout the three years each time I had a cycle. I never want to have that happen again. I also had radiation therapy on my upper right eyelid to remove a KS lesion, and the radiation oncologist missed his mark, hitting instead my lower lid scarring it permanently for life. My Ophthalmologist says that my lower lid looks like the Grand Canyon. It ruined my tear ducts and my eye is constantly dry requiring preservative-free eye drops almost every hour. Because of the dryness, I am prone to infections which I get about every 2 months or so. Until recently, for the past many years it felt as if I had a large foreign object in my eye scratching the cornea. My Canyonesque lower lid was doing the scratching which was quite severe and required corticosteroids to reduce the inflammation. It was quite painful, but I have discovered that Arithromycin Ointment in my eye every other night prophylaxes against infection and removes the sensation of the foreign object. I have had a terrible time with invasive procedures such as chemo and radiation, and, quite frankly, I don’t want anything like that again. Deciding whether or not to do dialysis is a huge decision, and one that cannot be made in a vacuum. It can only be made in conversation with people whom I trust to have my best interests at heart and who would respect whatever decision I make no matter how uncomfortable it may make them. My brother, Len, who I love dearly and respect completely is one of those people.. I’ll also talk with some of the men in my Thursday night CMA home meeting. These are the men who came to take care of me while Jerry was away in California at the WA conference. A different one of the men came for every 24 hours until Jerry came home. They took care of me and just spent time with me with love abundant. They are my family. Because my decision is based largely on theology and my spirituality it is important that I speak with my former Spiritual Director of 23 years. He is a man of great wisdom and spiritual insight, an Episcopal priest and former Benedictine monk, who is Gay and approximately my age. He and I worked together as spiritual caregivers during the AIDS genocide of the 1980s and 90s. I trust Brian completely to really hear what I have to say regarding my decision around longevity and what price I would have to pay in order to live longer. He will be a great help to me. It is through these conversations, through my own intuition, through my writing and daily meditation readings, etc. that I can always hear the voice of my Higher Power. My 12-Step program has taught me to thoroughly trust my Higher Power to speak to me so that I know what the next right thing to do is. The Mother has always taken care of me, as I have said again and again in this series of essays. She is not going to fail me now when I need Her the most. Ma Durga, my Higher Power, has always taken care of me ever since I was born. She was with me through all the childhood abuse, through all the pain of my internalized homophobia and self-hatred as a child and adolescent. She was with me during my great Coming Out in 1965, when I knew that in fact I am lovable and that I had learned to love myself for the first time in my life. She has been with me throughout my career (including my sexual career) and the entire time I’ve been living with HIV/AIDS. She has never let me down, so I completely trust that She will be with me as I make my important decisions regarding life and death, and I must listen to her voice through the people whom I love and who love me.
I am completely clear in my mind about making these decisions. This is NOT suicidal ideation by any means. I am not depressed, nor am I despondent. I am quite happy and thoroughly content with my life. I am simply choosing how I wish to die with dignity, in my own time, and on my own terms. I am going to die from the CKD no matter what. I cannot have a kidney transplant, because my body will not tolerate the immune suppressing drugs in order to keep my body from rejecting the new kidney. I am already too immune compromised and suppressed, and the medications will kill me. If I don’t have the transplant, the CKD will kill me. Dialysis is merely prolonging the dying process, and I don’t see any reason to do that. One way or the other I am going to die from the CKD. Another reason, which is a big one, that I want to let the disease take its natural course, is that Jerry is 75 and it is possible that chronologically he could die before me if I were to use treatment measures for the CKD. Should that happen, I would end up in a state-run nursing home with nothing of my own, except some clothing. No cats to love and be loved by. No friends with other Queermen. No caretaker who loves me. I can easily suffer extreme bodily harm from orderlies who rape, beat, neglect, and generally abuse senior Gaymen under their care. This is documented in study after study, and I would, indeed, rather die than suffer such torment, abuse, and physical danger as I live out my life in a blatantly hostile environment. My therapist agrees with me completely. I simply cannot allow that possibility to happen. Although I still have more people with whom to talk, such as my former Spiritual Director, my family, my care team, and people already on dialysis, I have fairly well made up my mind that this is the course of action I intend to follow. As my therapist says, I am not here to please anyone or make them feel better, but, rather, I am here to please myself and make my own decisions regarding how I want to live and how I want to die hoping that my loved ones will respect and honor my wishes without rancor or any negativity and not be selfish trying to keep me here as long as possible, no matter what the cost.. I have asked my therapist, whom I have been with for nearly 10 years and whom I love very much, to be with me at my deathbed along with those whom I love and who love me, in order to ease my passing and allow me to die in peace and with some semblance of serenity. I cannot change the Chronic Kidney Disease, but I can change the way it ends my life. This is how I wish to live out the Serenity Prayer from 12-Step recovery. “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 will be working my Recovery Program right up until I take my last breath, trusting the Mother to take me home in peace. This is my final wish, to end my life with dignity, grace, and with blessing, held in Ma’s hands, going back to the Source. Coming home!!