Be as Wise as the Serpents You Encounterby Justin J., May 23, 1994
FIRST SOME RANDOM NOISE:
Being of sound mind (last time I checked) I wanted to share some observations and experiences that could save your life. I believe that I am still here today (whole and functioning) due to bits of advice and wisdom garnered from others who live with hiv or aids. I refuse to give the acronyms, hiv/aids the dignity of upper case treatment, leaving them in lower case removes some of the harshness that the media so enjoys foisting on the public. Since we live in a society that finds the misery and suffering of others as vicarious entertainment; aids, hiv, cancer and a host of other ills provide the same thrills and spills that a good horror movie afford. You may close the book or turn off the TV and "good ol" reality is back; at least it isn't you. To see and hear about people who successfully (on different levels) living with such a disease just does not sell news or gain market share. We want to see crying, pain, suffering and despair.....only when it's that of "the other person," not us. Funny how twisted human nature can be!
The disease has been a teacher to me, somewhat like the sadistic nuns who dragged me out of my seat by the hair or rapped me across the knuckles with their rulers. It has taught me that there is no free lunch and that anything I get, I have to reach for myself. The Western medical establishment certainly is not interested in seeing me made whole and healed. It just is not in their good interest to interrupt their own revenue stream. If Jesus Christ were here today, merrily romping through the aids and cancer wards, the hospices (last stop on the omnibus of life), he would be hunted down by security and prosecuted to the fullest extent of the law. Why? you ask! It's obvious actually, he would be selflessly touching and healing the dieing, who would be hopping up and down, yelling, "YAHOO! thank you God!" Now they have to do something about all those empty hospital beds, don't they. Each one occupied, keeps those dollars rolling in. So anyone who offers an easy cure must be dealt with. Human nature also loves inertia. What is familiar is comfortable. To find cures means that the medical establishment must either find real work, or move on to the next disease for healing. Hey! heal aids and cancer and there is still a cornucopia of misery and suffering, just begging for a cure.
But it appears, like everything else, medicine has answered the siren song of the almighty dollar. It is far better to keep the patient base chronic and needy, like junkies dependent on their pushers. It works both ways; the medical establishment are just as addicted to the assured income from chronically miserable people, who seek comfort (medications), as the patient who begs the doctor for yet another magic bullet. Now if polio was still the scourge that it was when I was a boy, you could rest assured that the "Iron Lung" lobby would be doing all in their power to sabotage any effort toward a vaccine.
Cancer remains one of the tough nuts that defy cracking, to which I must reply, "uh-huh, yes of course." I have talked with a number of cancer specialists (off the record) who assured me that there will never be a cure for cancer and are quite open about admitting that it would be bad business practice. I suppose this would be like designing the ultimate home computer and operating system. It will never need to be replaced or upgraded. Once the market reaches saturation, then the manufacturers can close their doors and lay off all their employees. This is also bad business practice. Medicine is just another business, not some bunch of altruistic YAHOOS giving it all away, their only pay back being the joy on the faces of the healed, "thank you Jesus, thank you, thank you very VERY much!"
NOW ON TO MY DILEMMA:
I was probably infected with hiv.....OH about 1980 or 1981. I had a gay lover, who had just moved to Boston from San Francisco. He was a truly splendid specimen; handsome, witty, intelligent. Believe it or not, there are some motss who only dream of finding that ONE person and settling down quietly in a vine covered cottage for 50 years. I was one of these deluded individuals. The honeymoon quickly degenerated into a "Takes From the Dark Side" and I soon discovered the hidden revolving door he had in the bedroom closet. After 18 months of "walking in on" he and some mystery guest in OUR bed, I packed my bags. During those 18 months, he kept having all sorts of vague annoying medical problems; fevers, swollen lymph nodes, fatigue. His doctor assured us that it was probably "mono" or some other nuisance. I moved, then he moved, back to the left coast.
Being a glutton for punishment, I met what I thought would be a partner in crime for life in 1982. Another splendid man, more splendid than the first. After a year of bliss, he also had many celebrity trap doors in the house. It became like an emotional Russian Roulette, "WHO has been sleeping in our bed this time?" After two years of this, instead of me packing, I sent him packing head first down three flights of stairs. The immortal Quentin Crisp once said that there was no such thing as the tall dark man. The second s.o. also had more than his share of minor medical problems and when I accompanied him to our physician he assured us both that it could not be "that", but just mono or some chronic virus. "THAT", was something that only affected gay men in places like San Francisco, New York or L.A. according to the good country doc. A few months after s.o. #2 took a header down the stair well, his brother called me to ask how I was doing. My sixth sense told me that this would not be a "good news" call. After much hemming and hawing on his part, I managed to pry out of him that my most recent ex had been diagnosed with arc (definitely not good news), suggesting that I might want to take that NEW aids test. I had the blood drawn at three different anon sites, all three reporting back a positive test result. One site told me it really did not mean much, the other two strongly suggesting I get my will in order (hurry up and die, will ya).
From 1985 to 1989 I went totally underground (as digging a deep hole and jumping in it). I didn't answer the phone and only ventured out to the corner store at night, in trench coat and dark glasses. My friends avoided me (didn't want to hang around and watch me die) as I also avoided them (didn't want to watch them enjoy life as I died a cell at a time). Life became Hell, or at least Purgatory. If I had cancer people might shrug and say, "so! you have cancer." But no I have hiv, so they say, "OH my gosh, you have hiv. I think I left the water running in my house trailer up in Maine, gotta run!" I have to admit I blame the media for the majority of "hysteria" surrounding the subject of hiv and aids, plus the social engineers who help manipulate public opinion.
SKY DIVING WITHOUT A PARACHUTE:
Don't try the following without adult supervision! I decided that I could drink myself to death, therefore avoiding the last minute slow descent into Hell form hiv. All I managed to do was feel sick around the clock, develop a bleeding ulcer and lose 40 pounds, not from aids but from malnutrition (the miracle booze and Fritos diet). Gee, now on top of hiv, I was quickly becoming a chronic lone alcoholic. Got my ass into AA and regained some self respect, to say nothing of the money I was saving not getting drunk. People insisted I get into therapy, as nobody could deal with something as tragic as hiv without a shrink. Yet another money maker added to the equation. For $100 or more and hour I could purchase friendship by the session. Everyone has their fingers in the till. When I mentioned that some times I forget my car keys, or pour the coffee in the sugar bowl instead of a cup, I was told that it looked as if I HAVE aids dementia. If this is the case, then I should have gotten an aids diagnosis back in the 60's. That's another curious tid-bit, once you have hiv, then everything that happens is tied directly to hiv infection; the car doesn't start, it must be hiv related, you have one irregular bowel movement and it is the beginning of wasting syndrome, the list goes on and on. This alone was enough to make me "crazy."
In 1989 I had a brief encounter with shingles (herpes zoster) and was admitted to a Boston hospital, noted for aids research. One doctor was nice, the other (Dr Mengela) kept insisting I was dieing. When I faced him and said I'd be around to pee on his headstone, he told the nurse to sedate me (m'thinks I hit a raw nerve ending here). He kept barking, "you're dieing! you're dieing, you ARE DIEING. Accept the fact!" Like a spoiled five year old, I kept spitting back, "no I'm not, not, NOT!" The next day as I was being wheeled down for some tests I overheard a group of interns discussing aids patients, the leader saying, "I have the answer to the aids problem, lethal injection on admission." His peers must've liked his idea, as they were all doing "yo bro!" hand slaps and shoulder punches. After 4 days of wanna be med students, poking and prodding, interviewing and asking the same boring 20 questions, "how many thousands of men did you sleep with and how many tons of drugs did you do?" I told them the video would be on sale in the doctor's lounge for $19.95. Please NOTE: popular misconception #1, all it takes is one person, no revolving doors in the bedroom, no designer drugs, no hanky panky needed. Even the majority of homosexual males I've had the misfortune of sharing my status with are no less ignorant, "you must have been a real sleaze ball." I NEVER did any drugs and was always the one man type. Trouble is I usually found out after the fact that my other half was the, "so many men, so little time," type.
At this point in my life I did not have a personal physician, to the shock and dismay of my keepers. Now the good doctor (not that other guy) wished me the best at check out time and confided, "you'll probably live longer than all of us. Take good care of yourself!" She handed me a rather fat envelope containing all sorts of, "living with the virus," materials. And a prize to boot, a condom sampler. Like I needed a condom right now. I had been sexual zombie since the last ex and I split years ago. If it had not been for this hiv thing, I could have easily taken the veil and gone into a convent. Sex had never been top priority with me. All I wanted was devotion, honesty, and mutual caring from one person and one person only, and all I got was a tee shirt and this lousy virus. The good female, Florence Nightingale doctor strongly urged I find a regular physician, wrote me a script, and sent me on my way.
Finding a regular doctor when you have hiv is like trying to sell a Yugo with 100,000 miles on it; that is if there are any Yugos with 100,000 miles left on the road. Lucky me! After weeks of non returned calls, hang-ups and no shows, one community health center had just added new staff and were accepting new patients. Also lucky was the fact that they had a heavy hiv case load and mostly gay clients. It does not matter if you are dealing with hiv, cancer, ms, heart disease or other challenge.......select your doctor carefully! If you read any literature written by survivors of aids or cancer, they will strongly suggest the same.
Since I had not been to a regular doctor in over 10 years, the first order of business was a full work-up; drawing about a quart of blood, checking all the other vitals and getting some x-ray pictures. Dr Mengela in the hospital assured me that I was a gnat's hair away from death, but all my labs came back quite normal, t-cells included. I had heard a lot about what constitutes a "normal" t-cell count. I had been told, 1000, at least 2000, 10000; pick an expert and they had and answer. My new doctor said that best guess was 500-1200 would be considered normal. He also suggested I get connected with an hiv support group or two, which I quickly did, but wound up being asked to leave all of them. I just could not behave myself in polite company. Actually I had a low pain thresh hold for bull and petty politics.
Most meetings I attended became quite depressing in short order, drug trials, preparing wills, picking out caskets and memorial service music, comparing diseases and prescriptions, getting ready to die. At one of my first meetings I voiced an opinion that perhaps many, most of us may never get sick and die. I was quickly and soundly corrected, "of course I would also succumb, 100% would, get out of denial." Now a couple of years later a green newcomer made the same claim and nobody said "boo." So I told the lad to get out of denial, of course he would also die a slow miserable death like the rest of us. The chairman of the group silenced me in short order, but I told him I was only telling the new kid the truth, just as I was whipped in line by the more seasoned pariahs who helped destroy my hope and faith. At one meeting the chairman and I attempted to start a gay men living with hiv social group; you know, "we all know what we're dealing with, let's do some fun things as a group, shop, dine, dance, share hobbies, play sports, all that stuff." The idea was presented to the group and met with luke warm enthusiasm, "can we go to the aids weekly about AZT next week as a group?" They didn't get it, everything we did had to have some aspect of disease incorporated in it. Shortly afterward, I dropped out of the groups.
I learned about a small closed meeting that a guy was holding in his home. He had been fully diagnosed with aids for 6+ years and was doing very well. My contact gave me Sean's number and we talked for quite a while on the phone. He told me to drop by next Friday, that's when then next meeting would be.
OUTLAWS OF DIS-EASE PLOT THEIR ESCAPE:
Sean lived in a rather posh Beacon Hill condo, and I was pleasantly surprised to see the attendees did not look like Nazi death camp prisoners, but rather healthy and vibrant men. Sean greeted me with a big bear hug, "welcome to the world of the un-dead! They all want us dead, they all tell us we're dead, but here we are.....welcome!" Sean was a striking figure, with very large sculpted pectorals and washboard stomache. The first meeting I attended was on a hot July evening, him being dressed in running short and scant tank top. His facial features were "macho" to be sure. At first I was a bit intimidated by his, "don't f*** with me, unless you want more trouble than you can handle," expression. Under the gruff exterior was a warm, intelligent and witty man, full of wisdom on health issues. It was a warm circle of mutual support. Many times Sean did not want to talk about hiv, claiming to be hiv'd out. We discussed 12 step recovery issues, music, lover problems, work, general current events, along with alternative therapies and survival tactics. Unfortunately his meeting gradually petered out, and once again I had nowhere to go, except inside my own head. Sean was a power of example to me, learning that my doctor and I had a relationship, and should be partners, not doctor and patient. Many medical people did not like Sean, too smart for a mere lay person.
While attending Sean's group we also discussed government cover-ups. There was a man who sometimes attended meetings, a very sober and mature guy who needed to share something one night. A good friend of his who was a systems analyst in DC had called him late one night with a revelation. He trusted this friend, assuring us that he was not some wild eyed loony who regularly saw Elvis at the mall or UFO's outside his bedroom window. His friend had stumbled upon some damning material about the government's involvement in the spread of aids and it's knowledge of the epidemic. His friend told him that our leaders knew much more than they were letting on to the public and there was definitely a less than benign agenda behind it all. There was also a cure that would never be released...well not until all the right people were dead. This intrigued me, since my own military experiences during the 60's exposed me to some pretty scary research information.....the joys of Cold War paranoia!
Through conversations with others I found out my doctor was fairly well respected in the hiv arena. During appointments, he did seem to be democratic and open to my ideas. I had also heard many stories in meetings from other men about how their doctors dumped them when they refused to take AZT or other approved treatments. My doctor felt that less drastic measures were best to start with. When my t-cell counts began dropping, he asked if I would consider a course of AZT, adding that he felt it was pretty "nasty" stuff, but a minority seemed to do well. He also prescribed 1/2 the part line dose or 600mg/day, telling me that in his experience 300 was as good as 600, with much less toxicity. A short time after beginning my AZT, it stopped working and the only benefit was leg cramps, cramps and anemia. My doctor suggested I stop AZT and since he knew my own preferences were holistic, got me hooked up with a Chinese doctor in my medical cluster. Sean had often talked about his own preference for Eastern medicine; herbs and acupunture were his personal choices.
The worst part about Chinese herbs is the preparation; boiling, straining, cleaning up and the actual drinking of the stuff. But! this is a non-toxic approach, aimed more at immune boosting and viral suppression than the Western approach of nuking any living cell, malignant as well as benign. To quote the good Chinese doc, "Western medicine, very very experimental <grimacing>, Chinese medicine thousands of years old, older than Christ." The only other course of action I was taking was eating well, getting adequate rest, working out regularly and taking a rather benign anti-viral, Acyclovir (Zorivax), brought to you by the same folks that sell AZT, but this one is safe; a general herpes family suppressant. My doctor has me on low dose Acyclovir and said that the jury is still out on any further fringe benefits; suppressing other nasty viral infections, perhaps some effect on hiv itself (this is assuming that hiv plays a central role in progression to aids).
My t-cells recently took another plunge, but doctor felt it is temporary as I was getting over a cold and ratios were still fairly normal. At first I was told (and believed) t-cells were everything, but in talking to my doctor and others, they are just one marker, considering they really knew squat about the immune system before aids came along. My own doctor and others have told me about men with absolutely "0" t-cells, who have been in this nether region for 3 or more years with no illness, and others with relatively normal counts who died from aids complications. I've prodded my own doctor for an absolute answer, "I will die form aids, won't I?" All he will say is, "I really don't know. You do stand a much higher chance at having some problems over time, but I cannot give you an absolute answer. The condition affects everyone differently." At least he's honest, which is more than I can say for some doctors I've heard about.
Sean left the Boston area a few years ago and out of curiosity I asked someone if they knew his whereabouts. A curt, "probably dead, he has aids you know," was all I got back. Last Summer I was strolling the Esplanade along the Charles River. I had my walkman on and some tribal/ deep house music blaring in my ears, when I felt a sharp jab in my ribs from behind. Lo and behold the smiling face of Sean, balancing himself on roller blades had grabbed me by the hips from behind, "hi sailor, come here often?" He looked every bit as healthy as when I last saw him and said that he felt just as good. I began spewing my stored up angst and fear over my eventual miserable demise. Sean calmly touched my forehead, then my chest with an extended index finger, "it's all here.. ..and here. The state of dis-ease is 95% in the mind and heart. Do NOT give into their expectations; that's what they want." Many times I wish I had his spunk, and told him so. His reply was, "there's nothing special about me. You have every bit as much spunk and orneryness as I do, perhaps more!" He displayed some aggravation over the state of hopelessness I displayed, "give in, be a good child and do as they wish, and you WILL die. It's what they want. What do YOU want?" He left me with that question as he excused himself, skating off into the masses of people jogging, biking, skating and strolling in the sun.
So many people I knew, who all claimed they would not give in to hiv, are now dead or sick. It is easy for me to sit back passively, waiting to die. With all the negativity around this subject, it is very hard to find any glimmer of hope or support. There are a multitude of unsung survivors on the other hand that you will not see 20/20, 60 Minutes or 48 Hours beating their doors down with camera crews. I have developed an almost Pavlovian response to the mere mention of hiv, aids or both; I turn the page, switch the channel or turn it off. Many tell me that I live in denial of the truth. NO! not really. To quote the now late Michael Callen, "acknowledge the fact you have a condition that MIGHT do you in, then get on with life." I have met too many people for who, hiv is the center focus of their waking and sleeping hours. The same can be said about 12 stepping. Please do not get me wrong as involvement in 12 step programs have probably saved and salvaged countless lives, mine included! AA and it's spin-offs were a life raft in a stormy sea, when I needed them most. Like the hiv groups I know many 12 steppers who have no life beyond meetings, drunkalogues must be central to every conversation. For me, sobriety and sanity are maintained through my sanity checking and networking with other program people, but I do have a life beyond the smoke filled halls of AA, ACOA and such. My recovery is between God and I, which brings me to one important point.
IF YOU SEE THE MESSIAH ON THE ROAD, DIAL 911:
OH I know! here we go with the Bible stomping.....no not quite. I grew up Catholic, always eager to appease the infinitely demanding warrior Jehovah God, "ill be good Jesus, I promise I'll never commit that sin again. Can I have a candy bar now and stay up to watch TV?"
God was the ever present sledge hammer held over my head from age 3. If you sinned in thought, word or deed, he would instantly know and dole out punishment as he saw fit. I had a very dysfunctional relationship with an alcoholic God figure, "no you sinned and are imperfect. Come back when you are perfect and shut the door behind you on the way out. No cookie or TV for you, most vile creature." My God and creator lived somewhere between The Wizard of OZ, Star Trek's "Q" and the Knights that say "niii" in Python's "Holy Grail". He was an unreasonable and demand entity. For most of my adult life I left religion behind, exploring New Age, Buddhism, Atheism and materialism. None of these worked. As an old Jesuit once said, "Give me a child by age 5 and I'll give you back a Catholic for life." There are a lot of people who are convinced that I am a masochist, why else would I come groveling back to kiss God's sandals.
I'm not sure if it was 12 step recovery, hiv, getting old or all of the above that lead me back to my source religion. Maybe God wrote some firmware into the organism, that when they know their days are numbered, they turn to God (as they know him) for help and support. I began to attend Mass again, this time finding peace and solace in the services. I shopped around; Baptist, Anglican, Lutheran, Catholic and felt a sense of OK-ness after leaving each service. There was a period of time where I attended a conservative Baptist church and spilled the beans to the good pastor about my medical condition and sexual orientation in the same sitting. Rather than drag my ass out in an alley for beatings .....do you know what this old guy with a twangy Southern accent did? He threw his arms around me and hugged the breath out of me. I was assured I was as welcome here as the next garden variety sinner (typical human being). He also felt that I might not necessarily succumb to aids, that man's knowledge was not 100% certain. The following Sunday he wove something into the sermon about embracing those among us with aids as brothers and sisters in Christ; offer healing, consolation and love. I lost it and started blubbering away in my pew. An elderly Black woman hugged me and offered a hanky.....ahhhh, so this is what the love of God is supposed to be all about. Where my normal posse of friends has deserted, I found new support where I least expected it....in church.
This brings me back again to Sean. Many times at his meetings, he would tell us about his relationship with God. No Bible thumping or anything, but just the relationship he re-established with a God he thought hated him. I have talked with many long term survivors of aids and cancer, who also claimed their faith kept them going. I'm not preaching that you all drop what you are doing and accept Jesus as savior...that's all up to you. For me, it's probably the only spiritual path that works......end of sermon...."the mass is ended, go in peace, leave a donation on your way out and don't forget about the bean supper next Saturday night......Domini! Domini! Domini! you're all Catholics now!"
Sean also spoke about the threefold dimension of disease resistance; body, mind and spirit, all ganged up against the enemy. And the tap, that I still feel at times on my chest and forehead, "It's all up here.......and here!" I have a totally different perspective on things. The medical/pharmaceutical Medusa will tell you they and they alone offer salvation. Western medicine has helped instill a feeling of despair on me, which is why I added holistic health to my port.olio or treatment.
BUZZARDS HOVER OVERHEAD:
A while back I was seated in my cubicle, lost in some snarled bit of source code. I heard a loud, "OH my GOD, Magic Johnson is dieing from AAAIIIIDDDSSSS!" It came from down the corridor, heard over the line of cubicles. I jumped up, "Where? Who? When?" That night every newscast crackled with the fatal news. They had one of Magic's legs stuffed in a coffin and were trying to shut the lid over him. I did listen to the press conferences that evening. What a media circus, a real feeding frenzy of hysteria, "Yes Magic Johnson has the DEADLY AIDS virus, film at 11." There were those questions, "how long do you have to live?", "Are you sick?", "Who gave this to you?"....inquiring minds want to know! I was glad when Magic replied that he planned to be around for q-u-i-t-e some time to come...good for you Magic, may you take their licking and keep on ticking. I try to avoid Time, New-Speak and the other mass market rags, any time they have a feature article on hiv. Bad news sells!....provided it's some other group's bad news.
If I had a quarter for every obituary people have written about me, I could feed every parking meter in Boston for a day. "What you're still alive! I heard you died 3 years ago. What are you doing here?" You would think they'd be thrilled to see me alive and vertical, but no, just the opposite. It is expected that if you have hiv, you MUST die, and make it snappy, we need the space.
The gay kids all claim (or wish) aids was gone from their midst. It is after all, a predominantly heterosexual problem...or is it? De-nial is not just a river in Egypt. Then there is hiv among the haves and have nots. I have to admit, as do some doctors, that gay people with hiv have been one of the most "educated" groups of medical consumers in history. One doctor told me that his gay hiv patients should get honorary medical degrees, "doctor, I have this pimple, right here. What is it?"..."It's hiv related of course, everything is. That will be $75 please!"
On the other hand there are the poor people with hiv. At one meeting I attended a heterosexual Black man dropped by, very sheepishly asking, "Uh, is this the place?" He didn't have to ask "which" place, we and he knew, "Yup, c'mon in, welcome!" He needed to talk really bad, so was given the floor. He was frightened and confused. From the sound of things, he was not counseled much on his condition. He fumbled around in a brown paper bag, a bunch of bottles tumbled out, 100 count bottles of AZT, a couple dozen or so. He told us his doctor said he had to take this for the rest of his life, or else he would die. I asked, "how much?" He told us that he had to take 16 a day, every 4 hours. I exploded at this point knowing the approved dose was now 300-600 a day, the 1600/day being the original trial dosages that were given years ago. "That's way too much! You go back and ask your doctor why that high!" I said. They had not told him about any alternatives, just take your AZT until you die. He told us, "I was stupid man. I shot up drugs, so did my old lady. She has it too and is pregnant." He started crying, "I was stupid man, my baby is gonna be born with aids. They told me so." We shared with him that not every mother with hiv will pass it on to their children and that she should be taking good care of herself. I asked him of he was still using, "No, I got clean. My case worker got me into NA." I told him that was probably the best thing he could do for himself and to stick with the program, "that's half the battle man, good for you."
After the meeting we took him out for coffee and let him talk more, telling him to keep coming back. He never did return, although he thanked us for being so understanding. It was meetings like that one that made me feel good and sad at the same time. The information your health provider volunteers seems tied into who you are......or how you will pay for services rendered. At times I think hiv is nothing but the Tuskegee Trials, Part II....selective genocide for the betterment of scientific knowledge....BAH!
How am I today? I really don't know. I feel pretty normal, except for the knowledge of this virus. My blood work hovers in that twilight zone of "certainly not normal", but "not quite bad enough". I pray, I do my holistic routines, I work out, I pray, I hope against hope that I live long enough to thumb my nose at the experts, I pray some more. And I live in fear; fear of slow death, fear of ignorance and hatred, fear of discrimination, just plain free floating fear. It's hard work keeping the emotional Klingons in their sector, but nobody else will do it for me. I'm here today.
FOR THE BUSY EXECUTIVE, THE BULLETED SUMMARY:
It probably does not matter if you are living with hiv, cancer, heart disease or anything else that the medical establishment throws crumbs at. Here is a list of little tips; take with you what you need, leave the rest behind.
- HIV or AIDS does not have to mean a certain death sentence. As a man thinketh, so he is. Try to fight the bullshit and dogma.
- Believe it or not, doctors are human also, mere mortals, groping around in the dark, just like you are. They just have a sheepskin to prove they've groped around longer. Think of them as glorified car mechanics or technicians.
- Make sure your doctor is on your side and is looking out for YOUR best interests. Question any tests or procedures, if you do not feel they have been explained adequately. Ask about any alternative tests; cheaper, less invasive, etc. If your doc has an ounce of compassion and/or had been doing his homework, he will share his little secrets and recommend accordingly.
- Have him or her explain the results or printouts in Earthling terms. Some love talking in "doctorese"..."The great and powerful OZ has SPOKEN!" If they act offended or defensive (like you're planning on opening a competing practice) then let them know about it.
- This is an area that many people may not consider. If you find yourself in the hospital, or have not found a regular doctor that you trust, be careful about what you say during in intake interview or discussion with doctors. Some may interpret your input to suit their own agenda and some very damaging things could be placed in your file. Ask to review any transcripts with medical people. Question or contest anything you feel might put your medical coverage or reputation in jeopardy.
- If they prescribe a drug, don't just eagerly swallow every pill they throw at you. Ask about possible side effects, if necessary buy a prescription drug book (I have one on CD-ROM). Some doctors will tell you the nasty symptoms you are experiencing are part of your condition, when they are actually toxic side effects. Find out if the damage they do outweigh the benefits.
- Read up all you can on your condition, an informed consumer of medical serives is one of your first lines of defense. You may even WOW your doctor with your knowledge. He or she may wind up picking your brain.
- Get a second or third opinion if what you hear really bothers you. Not all health care coverage will allow all the additional cooks in the kitchen.
- Get networked! Find out about support groups in your area for whatever condition you have. I found that peer led were best; most everyone will understand your feelings themselves. This is one of the most powerful things about 12 step programs that WORK! Your health care provider may be able to help you get hooked up with others.
- Help someone who has aids or cancer, who might not be doing too well. If you feel up to it, become an aids buddy, copartner. I don't know why it works, but helping someone else worse off, somehow helps you also.
- Meditate or pray. If you believe in God, enlist his help. It's also cheaper than seeing a shrink. For hiv, many major cities hold inter-faith aids healing services. I found these to be comforting and uplifting. At least you'll know someone is on your side.
- Not really related to meditation, escape is not always a bad thing. I returned to long neglected hobbies, writing being one of them. It offers lots of catharsis, as well as possibly helping others. Programming and hacking are almost like meditation to me; just the machine and I, locked in an embrace. My workstation really does not care about my medical status. Some might say it's mental masturbation. Science fiction is a great escape and I find myself reading a lot of Sci-Fi these days. An absorbing hobby can be a great tool to get your mind of yourself. Get your head out of your head.
- Exercise, work out, scream, do something. I heard and have read through many sources that exertion releases "endorphins" legal forms of morphine that you don't need a prescription for. I have noticed that after a good series of workouts, I feel much better and the noise levels in my head drop quite a bit. The myhical runner's high does exist. I knew a guy who had low t-cells and felt like shit all the time, was doing lots of AZT and stuff. He dropped the drugs, started running, ran a few marathons even, pumped iron and his t-cells went sky high. This will not happen to everyone, but for some it works. Now I have big pecs, powerful arms and legs and a wash baord stomache. I'll make quite a striking corpse at my wake :-)
- Eat well, you are what you eat. Go easy on junk food, and eat lots of natural stuff; fruits, veggies, whole grain baked goods. Cut down on the fats and additives. You might even want to consult with a nutritionist.
- The jury is still out on taking supplements; Western medicine poo-poo's it as snake oil, therefore useless. I wonder then why they're so big on getting it off the shelves and under prescription. I buy mine at health food stores and not the supermarket brands.
- You might want to look into acupuncture, Chinese Herbs, Native American Herbs. These people have been around a lot longer than Harvard Medical School has. This brings to mind "Medicine Man" with Sean Connery. I believe that hidden cures will be found in the wisdom of shamens and tribal doctors. The problem is that God holds the patent on all the natural stuff. Drug companies make their killing on the synthesized drugs. I won't hold my breath waiting for Western medicine to come out with some cheap, effective and non-toxic treatments soon. I read a medical paper about ancient cures, which blew them off as "hocus-pocus" and "placebo's," with no real value. Why? because the big egos that roam the halls of major institutions didn't think of them first.
- Get enough rest. Listen to your body; if it's tired, then sleep or meditate. Make quiet times for yourself. Meditation, prayer and rest also help repair the body, quiet the mind.
- You are not "wussing out" if some new symptom appears as minor as it seems. If it does not go away or gets worse, then get on the horn to your health care provider.
- Not every symptom is connected with hiv or cancer. I knew some people who are dead today, not from aids, but from totally unrelated problems that their doctor failed or refused to look into. Damn! this make me mad.
- Don't believe everything you see or hear the media talking heads spout. Remember they love drama and pathos. They love watching you squirm around. Life is one big expose to them.
- When you receive the diagnosis, don't do what I did; sell off, throw/give away all your possessions. I did this 9+ years ago, convinced that my next breath would probably be one of the last ones I would take. It's taken me 9 years to replace some of my treasures and trinkets, but I travel lighter today than I did then.
- Don't be surprised if some or all of your friends turn away. I guess this is just human nature at it's worst. You will find out who your "real" friend are. You might also find new friends where you least expect them. In my case the Christian community have been the most supportive.
- The world is full of stress! but you know that already and stress is a great enemy of the immune system. It's no wonder there are so many immune problems in the world today. In a way we're all living with a form of aids. Try to lower your own stress levels, despite all the world does to pop a blood vessel in your head. See meditation and all the other stuff above.
- If you're Catholic or Protestant, say a prayer for me. I need all the help I can get. The favor will be returned.
May 23, 1994 Cambridge, Massachusetts