Tag Archives: AIDS

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Dedication

I wanted to Dedicate my Mr. Community Service Award 2015 to my friends who died of AIDS. It is because of them that I am who I am. It is because of them that I have given so much. It was through their death that I learned about life and how to live.I couldn’t save them but I knew I could be of service to others. Much of who I am is because of what I learned from them and how bravely they faced death. Although I never got HIV, I was terrible affected by it. I have learned to co exist with a virus that is NOT inside me but still lives WITH me and has taken so much FROM me. I often make a concerted effort to not look back or think about them too much because it takes me out of the present and makes me very sad and upset. With World AIDS Day coming up on December 1st, this Award came at the appropriate time of the year for me. The greatest honor I have ever been given and privileged to, are the times when guys will come up to me (and its happened 5 or 6 times) and have told me, “you saved my life Daddy.” That is by far the GREATEST award anyone could ever give me. Telling me I, in some way, had a part in saving their life! I say it again, there is NOTHING better on this earth!

In September 2014 I was awarded Associate of the Year for the First Coast Leather Society at their Anniversary weekend (which I attended). in 2011 AND 2013 I was Awarded Associate of the Year for the Trident knights. Being the recipient of an award is quite a different experience than winning a leather title. You don’t get adoring fans and groupies wanting to sexually service you and you don’t get to travel to represent anything. Being given awards are years of the recipient working within their community and years in the making. Leather titles you can walk in off the street, look good in leather and VOILA, you’re a title holder. You automatically get a voice whether you earned that voice or not! You work your ass off for Awards and you earn them over MANY years. After a year your title ends. With an Award your work NEVER stops. You feel a GREATER sense of responsibility because you were given the award in recognition of DECADES of service and you feel compelled to do even more AFTER you have been recognized. I am more than honored to be given these recognitions. Getting a standing ovation truly does put everything into perspective for me. I felt my friends looking down at me smiling. I often say I will never retire and I never will. Too much left to do! I again want to thank everyone who had a part in giving me this honor and I will bring honor to the award you have given me long after the year is over!

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AND IN THE END…THE LOVE YOU TAKE IS EQUAL TO THE LOVE YOU MAKE

A long title yes…

And in the end….My LAST long time HIV surviving friend Robert “Chandler” Karasik died this morning of AIDS related cancer, July 3, 2010.

It was as horrific as anything I ever experienced in the 1980’s. I am sad but even more relieved that its over. I am exhausted beyond any words I can convey to you out there.

Last night I was very restless after getting two phone calls from his sister Gloria telling me that the hospice nurse told her that it wasn’t going to be long. I couldn’t sleep and was restless so my roommate Ron and I stayed up and hung out in the backyard and talked. About 3:45AM I felt a finger on my arm in the EXACT spot Chandler had asked me to put his star (Ink tattoo)) after he died. I told Ron he was here and then I said, “hes dead.” I said that for 15 minutes while still feeling that light touch on my right arm..About 4AM I got up and commented that “why is it that they always pick 4AM to die?” I went to bed and at 8:40AM Sat morning,  his sister called and said that he wasn’t moving and his eyes were open as was his mouth.. I told her that he was gone.  She thought he fell asleep with his mouth open since it was dark and she had the lights out. She explained to me that she heard him gurgling and sounding like he was clearing his throat..she thought he was getting up again but then the sound stopped and she assumed he went back to sleep..what is was is the common term as the death rattle. I asked her if this happened at about 4AM and she said WHAT how did you know to which I explained to her what I just wrote here. I told her that Chandler came to say goodbye to me by pointing on my arm where the star was going to be inked on my arm. He KNEW I would understand that he had left all the pain and disease behind.

I got dressed and went over there with Ron and she was a mess.. I helped her with phone calls the hospice nurse and the funeral home since Chandler had already paid for EVERYTHING. I peeked into the room where he left his AIDS racked body and saw how peaceful he was and his legs were that of a doll and at 5’11” he was only 90  pounds. He was covered with his blanket and was so painfully thin. I went around to the neighbors at Gloria’s request asking if anyone wanted to see him before the funeral home came since his body is being shipped up to New Jersey for the service and burial. Several of the guys came to see him one last time but the wives stayed with Gloria while I helped the hospice nurse and go through papers, making calls and keeping Gloria calm.

The death certificate was signed and the funeral home guys came and by 11:15AM they went into the bedroom, wrapped him gently in the blanket he died in and placed him in a blue cloth zip up bag. I couldn’t watch as they wheeled him out of his home on a stretcher for the last time. Ron stayed with Gloria and watched while I turned away facing the kitchen and cried. MY 20 year time with him was over. He loved his home so much and I just couldn’t watch him leaving it like that. I stayed with Gloria several more hours getting things together for her to take up to New  Jersey.

I am now the LAST one left of the entire group of men I grew along with. This will be my last time care-taking anyone with HIV. I am DONE with it..On Monday,  I will be getting HIS star inked on my arm and again this  is the last star I am adding to it. I realize that AIDS is not going away because men insist on bare-backing and spreading this virus with the God Damn stupid idea that the meds will keep them going forever without ANY consequences or side effects so they can just keep bare-backing regardless of co infections with OTHER STD’s and reinfection with different variants of the HIV virus. You know what the worst part is? You have so many fucked up young gay men who will say, well hey that’s his choice and hes my friend so whatever he wants to do is ok with me…FRIEND? Are you FREAKIN kidding me? JESUS Christ if you are a friend you don’t tell them anything because yer afraid of losing their friendship? Well if they get sick and die you’re going to lose them ANYWAY DUMB-ASS.

The gay society is very ‘well its not me so whatever they want to do doesn’t affect MY life and they are my friend and can do what they want’. This I have heard MANY times. That’s just so FU^KED up I cant even put it into words.. When these A-HOLES watch their friends dying in front of them I wonder what then?

I know 7 guys that died just in June from AIDS related and HIV med induced cancer. You don’t think a NEW wave of death is upon us??

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The End of a TWENTY Year Adventure

Its been a very challenging week. My friend of 20 yrs is nearing the end of his struggle with AIDS.  For the first time in a long time I lost it. I came home from his house this past Wednesday evening and I fell apart. Thankfully my roommates who are also my good friends were there to hold and support me.  He doesn’t respond to me anymore and in the many hours I am there speaks only a few words, many of which are inaudible and incoherent. He has fallen several times, Shit and pissed himself when he fell in the shower and his ankles are very swollen with his toes turning black red and blue. Yes he is surely dying. I didn’t think I would go back to see it again but on Friday evening I went back. I am not sure if I did it for him, his sister or for myself. I HAD to let him know that I love him at least one more and maybe last time..I told him..I had to get on the floor to look AT him since he cant seem to focus his gaze anymore and cant move his head…I told him, you know I love you right?  He nodded barely and I grabbed his ice cold skeletal hand. I told him again..”you know that I love you and that our 20 year friendship is the best”. He then actually said “of course”. There was no smile, no affect, no emotion..just a vacant look but he understood..I needed that for me..His sister then showed me the Hospice papers sitting on the dining room table. I sat and read them as my friend who was with me left the house to go have a smoke.

I opened his chart..I see the orange card that says in HUGE BOLD letters…  DNR … Do not resuscitate. I froze. I had forgotten how that felt to read those words knowing that this would happen soon. I read the chart.. respiration 17 blood pressure 95/55,  weight 105 lbs at 5’11”.   MY God its bad I thought to myself.. I went through the chart and you can see the steady decline from a normal blood pressure and  a 28 respiration and 115 lbs  down to the latest numbers in a week. The finality of his life weighed on me because I knew the numbers weren’t good and that when he stopped breathing there was no hope of reviving him. It could be hours or days; a week maybe? Well hes fooled the doctors all this time..maybe hes gonna fool them again  I kept thinking to myself. Ive asked my friends; not this time they tell me, not this time.  Hes not gonna bounce back  and recover from this..hes not gonna get 6 months or 6 weeks..maybe not even 6 days..

Facing this is not easy. I am done with HIV… at this point in my life I have nothing left to give because I have seen too much and I am tired. I have thrown people out of my life who cant deal with me talking about it..of course NOT a GOD DAMN one of them have seen it and the day WILL come when they cant turn from it. Why? Some of those who yelled at me HAVE IT themselves and the others will have to watch it AS I HAVE. The excuses I have heard are no better than shoving your head in the sand like an ostrich so if I don’t see it or hear it,  it doesn’t exist, I don’t have  to deal with it..FOR NOW. How I feel honestly..FUCK ALL OF THEM. You can BET when that phone call comes, and it will , I wont be answering it. So many turned away from me..imagine;  NOW in 2010 ?  They have and they can stay AWAY from me. I CHOOSE not to have them near me now. By the same token some have run TO me in ways I never expected and the phone calls I have gotten from men on the net and on FaceBook who I never thought would even think bout it have been a wonderful support. It has made me know that despite what I have dealt with in so called friends I have given money, love and support to, there are those out there who DO give a damn. I think of one of the Beatitudes to end this post.  Blessed are the merciful for they shall obtain mercy.

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The Early Days of HIV, AIDS, GRID, The Saint Disease.

I posted this on Mama Sandy’s Family in Leather and I felt it important enough to re post it on my website here.

It took me some time to be able to write this post since I am going through an extremely difficult time. I am losing my LAST long time close friend with HIV disease to AIDS and the very Meds that were supposed to keep him alive have given him cancer. He is 109 lbs at 5’11” tall. He cant eat drink or swallow anything. Hes on Albuterol for the shortness of breath and morphine for the pain.
After he dies there are no more friends left with long term HIV. I will have outlived ALL of them.
I am writing this post for Rick Weber, Mamas Cyclist who asked about the early days of AIDS. I am FROM NYC and was there with Larry Kramer in Act Up, I knew Keith Haring, Tom Stoddard, Diego Lopez, Vito Russo and others I cant think of right now. I was part of the ORIGINAL GMHC 800 men study and the follow up 500 men study back in the 80’s. Google it..its there.
Before AIDS WAS AIDS and before it was even GRID, it was called “The Saint Disease” because it appeared that anyone who went to the Saint got the disease and no one knew what the hell it was. The Saint was a HUGE disco on the lower East side on East 6th St not far from the ST Marks Bath House. It was decadence at its pinnacle. You could check ALL your clothes down stairs in the basement and dance in a jockstrap or less and have all the sex you wanted with whoever you wanted and the drugs of EVERY kind flowed like water..
My friends brother had slept with Patient Zero from Canada as did everyone in that particular house on the ocean on Fire Island in the Pines. EVERYONE in that house at THAT time is dead. Don’t ask me for the address. I prefer not to disclose that.
It was a dizzying time Rick. Men you didn’t see for several weeks just up and died. When you went out to the Pines there was house after house after freakin house that was listed as an estate sale and you know what happened. Back then the listing was on the front of the house saying “ESTATE SALE”..Guys were afraid to stay in the houses because no one knew how the virus was spread and thought it was in the mattresses, sheets or even in the air.
I remember being told, just go with fat ugly guys. They’re safe because not many want to screw with them. All the hot ones are going to die.
You ended up dating big obese men that you figured were safe. They died too.
Hospitals were a nightmare. Nurses left food on trays, OUTSIDE ON THE FLOOR and refused to go in the rooms. Some doctors REFUSED to treat patients and funeral homes turned away dead men left right and center.
Being who I am Rick, and you KNOW me, I would say, (and excuse my language everyone) FUCK THIS and I would grab the tray without the protective clothing and go in the room and feed my friends.
I cant tell you how many times I would hug guys who were frail and that would bring tears to their eyes because NO ONE would touch them, not even their own parents, lovers..ANYONE. I was a regular at ST Vincents Hospital in Greenwich Village to see friends who were sick..sometimes going to multiple hospitals to make the rounds to several friends at the same time. I was happy when they were all in the same place so I didn’t have to run around all over NYC. From Dec 7 to the 25 one year,
I lost THREE friends.
I lost several good boys who even though I wasn’t afraid they would never let me be intimate with them for fear of infecting me. I stayed because I loved them and it didn’t matter. All of them died in the early 90s. When you would pick up the phone to call friends you knew what had happened when the phone was disconnected. When the pain was so bad you drew straws with other friends to see which one would pull the plug when the doctors and family left the room and your buddy was in a coma FULL of KS lesions all over his swollen body.
This is where I come from Rick..and I can tell you that watching my LAST friend now is NOT ANY different than watching the first one 25 years ago.
Difference is you live longer..but now the issue becomes the medicines
that are supposed to keep you healthy, keep it chronic but sometimes doesn’t. MY friend was HIV poz for only THREE years. He got cancer and died at 42 yrs old.
The issue is guys getting infected by choice..
The issue is guys forgetting there are OTHER non curable diseases like
Hepatitus C which tax the immune system when there’s co infection with HIV and as much as other STD’s are curable like gonorrhea and syphilis they STILL tax the immune system.

Well Rick..there’s part of my story in a nutshell..I recall you requesting some info on the early days in NYC and there you have it.

To ALL of you going to IML.. PLEASE PLEASE PLEASE make informed and HEALTHFUL choices. HIV is FAR from over and is NOT curable…the meds suppress it, but over the long haul, AT A PRICE!!

In Service..

Mammas Buddhist boy..

SIR Jim

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WATCHING DEATH

I had forgotten how awful watching death is. The last close person that died was my father back in February of 2000 but this is different.

The last person I watched die of AIDS was back in April of 1996, my Best Friend Black Michael. I had really forgotten the details of those memories until now. Michael had been my longest friend, my best friend, who at the time died of AIDS.

Fast forward to the present, May 2010. My longest and last friend with Long term HIV is dying and its been the biggest challenge in my life since 1996 when I was also fourteen years younger. I am glad that I have not become callous to it all after having watched so much death when I was in my late 20’s and into my 30’s and finally having it end when I turned 42. I see him now many times during the week. He weighs 109 lbs and he is 5’11” tall. The cancer has taken over his body. He is on Albuterol because he gets shortness of breath. He is on morphine for pain. He has a hospice nurse come to his home and he has an oxygen tank in his house. He cannot swallow eat or drink anything substantial anymore. He chews on crushed ice. I was there this past week with my friend Kevin and I saw “the box” that the hospice nurse brought with her. Its kept in the refrigerator and its NOT to be opened by anyone other than the hospice nurse. What is it you ask? Its the box that contains the drugs that will put him out of his misery when he gets too far gone. I held that box in my hand as I have done before and I prayed right there in his kitchen that ANY kind of gentle divine being would just FUCKING take him from all this pain and misery. He cannot drive or even sit up much anymore for extended periods. He doesn’t even answer the phone. Now here’s the kicker to ALL of it. He bought his sister who’s living WITH him a plane ticket BACK to NJ.  MY friend Kevin told me that hes sending her home because he doesn’t want her to find him dead in bed or to be there when he dies.. Makes sense to me.. Hes going out on his own terms and the reason hes lasted is simply because he has fought this tooth and nail and because of it this is why hes still here and looks like skin over a skeleton.

I make sure to sit next to him..close , and to tell him that I love him as often as I can..NONE of this is about me although when he dies it will be me that has to deal with it all because he will be out of his suffering and when he dies so does that fucking virus and I will have lost one of the major friends in my life..20 years worth.  Yeah Yeah I am thankful for the time..that’s not in question and he has lived a full life and loved traveled and had tons of money, houses and cars. Does any of this rationalizing make it any easier.. NO. Its all Ive got though..

Another weird thing..the guys on the internet have been more supportive of me than those who actually have had dinner in my house, spent time with him and knew him.. I have not gotten ONE PHONE call or even ONE TEXT message from those around me that have seen him in my house FOR YEARS; yet I have had total strangers who have called me up on a regular basis to make sure I am ok and these are Leather folk to add insult to injury. Hows that bullshit for you? I  have done a MAJOR re evaluation of those around me..and if they haven’t been there through this they sure as hell aren’t going to be there for me in ANY capacity..and if you happen to be reading this now..DON’T BOTHER.  If I had to write about this to get you to think and move your ass then you aren’t worth my time.  I am lucky though for the few that are sticking by me because this has been HORRIFIC to watch. They go to their bars and parties and events without one thought outside their own miserable little world..I wonder what happens when THEY will have to go through watching someone die that they are REALLY close to..Guess who’s NOT answering the phone when they call?

Am I angry??? YOU BET YOUR ASS I AM. This is one MAJOR reason why I don’t bother with the leather community down here. Do you know how many people I have told this to?? They don’t want to  talk about it or deal with it. Well you see, as I was told, I have HIV and I cant deal with it..they laugh nervously then move on to something more pleasant about THEM. I have actually gotten yelled at for talking too much about my friend who’s dying because that all I talked about..Well Jesus Christ hes my friend of 20 years its not the family hamster for Christ sake.  I am now surrounding myself with men who can be there for me and who want an INTER-INDEPENDENT friendship and I AM finding them;  just not in the Leather Community. They don’t yell at me, they don’t tell me that’s all I talk about, which by the way that’s NOT all I talk about. I am supported and helped through this nightmare..yet AGAIN.

Here’s ANOTHER BIG bullshit excuse I get..Well you don’t go to the bars, you don’t come out in leather, you don’t go to events..HOWEVER, I have offered my time, my energy to teach, to speak and I have gone to events and offered what I am capable of giving and I get, yes yes we’ll call but no one does..and then its MY fault when I don’t keep going and no one bothers with me..Its still my fault..so because I don’t do this or that..you tell people your friend is dying and its ok not to give a shit right? This is what I am told…and you wonder why I don’t bother with the community here? The biggest kicker.. MANY of them have HIV and one would think that there would be SOME morsel of compassion. There isn’t.  I hope none of these people go through what I have. I wouldn’t wish this on a dog..For any of you reading this, please pray for The Divine to take him quickly and in peace..

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AIDS: Public Health Crisis and/or Big Business Bonanza

I am going to write a disclaimer RIGHT from the start. This is NOT directed at every AIDS fund-raising event or party. There are MANY worthwhile events to give your money to in relation to HIV/AIDS, but I am speaking of other businesses, some gay some straight, who use these events for their own benefit.

Many years ago when hearing the word AIDS would send everyone scurrying like ants away from the person who even mentioned it, there was more of a sense of urgency to the rapidly escalating public health crisis.  The evening news showed photos of gorgeous men only to then show video of them and how they looked like they had been in a concentration camp in a matter of months. The downhill path was extremely rapid. With the advent of the new meds and the declaration that AIDS/HIV as  now being a chronic but manageable disease like diabetes the focus has waned. OF course what these glamorous ads fail to state in the large ( not fine print ) is the cancers, diabetes, heart attacks and strokes that the long term use of these medicines cause and oh yes, and death from these diseases that the meds cause. Fatal heart attacks, massive strokes leaving these people paralyzed with slurred speech;  liver, pancreatic, colon, anal and brain cancers which end up killing the person along with the day to day side effects that are in the fine print..but you get 20 or 30 more years maybe even longer if your body reacts well. The quality of the years; well only the people going through this can answer. I cant. I only know what I have seen and what I am seeing.

Well lets get to the events. Back when everyone was in a panic and the AIDS walks, dances, concerts etc began, so many businesses were giving away free food, drinks, prizes to the participants. If you proved you were a part of the event and completed it, you got all this worthwhile free stuff you would actually use as a thank you and some great food to nourish yourself after the long walk…FAST FORWARD to the present..

You walk 6 to 10 miles, go through the trouble and effort of raising all this money, walk in rain, shine or blistering heat, with many of the participants being HIV positive themselves and guess what? These establishments, some of them gay some not, throw after parties, but YOU have to pay for EVERYTHING. You get NOTHING but a guy announcing to clap for the participants..BIG WOOP DI DO. One of my friends who did an AIDS walk who is HIV positive himself for 13 yrs and HAS the nasty side effects of the meds to deal with every day told me he went to an after party but he saw everyone getting drunk and the food so backlogged and expensive that he left the party to go get a real meal in a place that was cheaper. That was a nice thank you for a man who has the freakin disease and who couldn’t even get a bite to eat after walking for 3 hours and feeling light headed and dizzy. Isolated incident? I heard the same story over the next 3 days from at least 20 others. OH,  and the establishment kept ALL the money they made from the after party.  The thank you party was for the establishment not for those who walked. They were thanking the walkers for dropping all that money in THEIR place.