Essays plus more for the mind and spirit

Anatomy of an Illness, Part 8

Tonight I am not in such a good emotional/psychological/spiritual space.  It is all beginning to get to me in rather personally desperate ways.  I was just discharged from St Joseph’s Hospital where I was in a double (!) room (I nave never been in a double room before and roommates are not nice). From now on I will request a private room where I can listen to my music or watch my TV and turn out the light when I go to sleep (my roommate kept his on both nights and the TV was going all night while he slept). Roommates in a hospital can be very rude because they are, rightfully so, focused on their own needs and getting themselves well, and don’t really much care for how their new roommate is or what my needs might be.  He didn’t have much to do except not sleep through the late night TV programs played without regard for my privacy at all, and politely turn out his lights.  He had the room lit up on his side and I was only divided from him by a voluminous curtain, which I kept tightly closed in order to retain some semblance of privacy.  I was not used to this at all.  I have always been given, without asking, a private room, always with the large window overlooking Lake Michigan and the Park below. So, I knew from the first ten minutes in the room that this was not going to ne a particularly smooth hospital stay where I would get rest in order to heal. Fat chance!

The food at St. Joseph’s is an inedible horror story.  Everything is boiled down to nothing, such as carrots, broccoli, green beans, zucchini and fried dry chicken breasts.  Occasionally, there would be a great desert of which I always asked for two, because I knew that desert was going to be my dinner or lunch or, perhaps, my only dinner AND lunch that day.  I ate a lot of cherry Italian ice, which is just that…cherry and ice blended together which is not sherbet.  It is very Italian, and I ate a lot of it in Italy when I went there many years ago, eating sorbetto to my hearts content. That’s the only thing good in the St. Joe’s menu.  One would think that in a hospital the food would be marvelous because we are people trying to find healing and if we are what we eat, then with hospital food there is no real healing from it. 

For the past three weeks my body has been swelling, starting with my calves, and extending into my thighs, then my abdomen, then my arms and hands and finally my neck and face those three weeks. I had enough fluid in my body to equal an extra fourteen pounds in water weight. That, plus not being able to walk even 100 feet without getting winded and breathless is how I knew something was drastically wrong. Gaining fourteen pounds in such a short period of time says something is, indeed, definitely wrong, and my vanity got the best of me and I thought everyone would see me as a circus grotesque, a freak to be stared at. Between my bloated body, my CROW Walker boot, my very slow pace, my need to hold on to people for dear life when I am walking in the snow, of which we have had a lot, or I would definitely fall a number of times and I was afraid that one of those times I might fracture a bone.

 At first the doctors thought it was a cardiac problem. I was in the hospital only for cardiac tests.  I had a cardiac ultra sound, an ultrasound of my legs to make sure that there was no embolism, an ecco cardiogram, and a stress test in nuclear medicine where I was given a pharmacological stress test, because I cannot walk on a treadmill at all. My cardiologist is a new doctor in my life and I am very blessed to have found him through referral.  I would not have found him otherwise. He is gentle, compassionate, brilliant, and will become a good friend as well as my cardiologist. After all those tests, NOTHING showed up, ABSOLUTELY NOTHING!!! miracles, that’s exactly what happened.  I lost fourteen lbs. in 48 hours and I am back to my baseline of 203.  Now I feel as if I can start losing weight properly, because I really do need to get back to my ideal weight of 180 pounds.  I know I will do it.  It will just take some discipline and perseverance, but it can certainly be done. My meds, especially my psych meds and the Testosterone injections, put a great deal of weight on me well over my normal 180 pounds with a great deal fat on my hips, and thighs and belly.

The thing that is making my life with AIDS so difficult tonight is that I feel as if I have lost the two most important, self-revelatory, self-expressive, and valuable aspects of my life, my métier, my vocation.  Those were my performing and my teaching, which I began when I was in my late twenties at least as a harpsichordist and teacher.  I began my piano concert “career” at the age of eleven when I was playing piano recitals in major concert halls in Pittsburgh, PA. I watched the National Figure Skating Championships these past two days, and I saw some of the most exquisitely executed art as I have rarely seen and some concerto concerts with world class orchestras. Writing is something I have always loved, but my creative fire and artistic discipline were directed solely toward my music as if I had a set of blinders on, my focus was so narrow and rarefied. Writing was something I loved to do when I needed a break from practicing, performing, and/or teaching.  I no longer have my definition, my spiritual and vocational identity. AIDS and its related Parkinsonism have destroyed my musical life forever.  The only way I indulge in my musical otherworlds is by listening to it through an extraordinary set of earbuds or through my Bose speakers.  I listen incessantly falling in love with a different composer every couple of weeks, and playing every piece of his or hers that I can get my hands on during that two-week obsession.  This week for instance, I discovered a most gorgeous, deliciously performed disc of the music of Claudio Monteverdi with Nirai RIhal and Phillippe Janoussky with the Italian ensemble L’arpeggiata.  The album is called Teatro d’Amore  and Janoussky’s counter tenor voice is like sweet honey dripping from the comb, or melted dark chocolate with a touch of raspberry in it.  It is mellow, lyrical, technically better than any other I have ever heard.  If one dotes on melted, dark chocolate with natural raspberry and dipping strawberries in it as I do, Janoussky is the finest, smoothest, non-waxy, rich, not an over abundance of cocoa (about 60%-75%) chocolate, not too sweet, but not too bitter because of too much cocoa. His voice is the perfect blend of all those ingredients, a recipe for one of the most exquisite, sensual, musical body/spirit experience one can have, I believe.  His “Si Dolce Tormento” is a marvel of color and nuance, which just weeps with the “sweet torment” of love. He is utterly tormented in his singing, but singing with such discipline and surety with no “counter-tenor edge” which I hear in most counter-tenor voices. He can control his dynamics better than any other counter-tenor alive, and his vocal technique is impeccable. As beautiful a voice as David Daniels has along with his most incredible stage presence, I still hear a certain stridency and edge to his voice. Phillipe Janoussky has none of this. It is pure, utter beauty.  So, I have been listening to Monteverdi ever since I was in the hospital. It is an album of some of Monteverdi’s greatest and most memorable music. “Pur ti Miro” from L’incoronatione di Popea”, the “Lamento della Ninfa” from one of his later books of Mardigals. I don’t know what the next adventure is going to be, but there is no doubt in my mind that it will be exciting.

And so, my dear followers, you can understand that with such love and passion for my art, the loss of it is very hard, very hard indeed, perhaps the hardest thing I have ever had to endure emotionally and spiritually.  The loss began in 2002 when I had to sell my most exquisite, grand, splendorous Willard Martin French Double Harpsichord, painted in Chinoiserie that copied an instrument’s decoration from the 18th century in France (Gujon).  It was as exquisite to look at as to listen to.  It is known to be his finest instrument from his work as a pre-eminent world harpsichord builder.  It was built in 1981, the early 80’s being the best years of Willard’s career, just like pre-WWII Steinway pianos from the 1920’s were their finest years.  I owned one of those instruments as well but had to sell that also. As the instruments were taken from the house and driven away up the street in their respective vans, especially the harpsichord because it was my life, my spirit, my ground, the voice of my God/dess, I felt as if I had to sell my dear children in order to have money on which to eat and money to pay rent and my few bills.  AIDS has ruined my life from top to bottom. I had to get through a great deal of rage put on myself for having been sick, but as I say in a previous part of this Series, I don’t feel guilty for having infected countless thousands of men with HIV because I didn’t know I had it. No one even knew what it was, let alone who might be carrying it, or whether it was a virus at all. As I wrote previously, that doesn’t excuse my behavior of sexually objectifying my beautiful Brothers, but it does alleviate any guilt and that’s good.

The thing I am so distraught about tonight is that I don’t know who I am anymore.  If someone were to ask me “What do you do, Roger?”, I would now say, “Oh…I live with AIDS”.  If someone were to ask me, “Who are you, Roger?”, I would say, “I am a person with AIDS” For a while my writing alleviated all of that nastiness. I could say, “I am an author and film director/screen writer.”  I can no longer say that I am a great harpsichordist and teacher.  The only creative outlet I have is my writing, and I love every minute of it, but there are intermittent times when that self-identity goes away and I am left with being a Person With AIDS (PWA).

The only satisfaction in all of this, is that since my musical career came to an end, it allowed me to complete writing my book Thoughts of a Tribal Elder: One Queerman’s Journey from the Ashes Risen http://queerwitness.com This has been one of the greatest achievements of my long life and this blog is going to become my second book, no working title yet, though.   I have to see what shape it takes. I just have to keep writing because there is nothing else I can do.  In all humility, I have much to tell the world, to teach the world, and I can no longer do it through my music, but, rather, now I do it through my writing. But, on nights like this, after yet another hospitalization, I despair of being anything but an AIDS patient who spends his days in physician’s offices, hospital rooms, having blood draws, CT Scans, MRI’s, surgeries, excruciating pain from the neuropathy and the general body pain from my muscle atrophy from the Parkinsonism, just sitting at home, especially this winter in Chicago because of the horrendous snow which makes it impossible for me to walk with my CROW Walker anywhere outside, so I have been stuck in my apartment for weeks getting quite antsy and getting further into my head and all its darkness and neuroses. Thank God/dess that I am back in psychotherapy with Bruce.  He provides a very safe place to explore these feelings of loss and despair and he can help me focus on all that I have for which I am usually quite grateful, but lately, that has all escaped me.  I will keep writing and speaking my truths, my biggest one being that AIDS is still a threat and can still be terminal.  It is certainly a constant threat to me, and right now, that’s all I care about.

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