Saturday, December 01, 2007

My Friend

Here is the post I wrote last year on World AIDS Day.

This year, I thought I would share something that has changed who I am as a person, and why I care just so much about bringing attention to AIDS, and to someday finding a cure.

In 1990 or 1991 I had this wonderful female co-worker who would made each day better than the last. She was gorgeous, loved to smile, and had such an incredible presence that everyone wanted to be close to her. One of her traits that I enjoyed the most was her habit of grabbing someone who was having a bad day, and taking them outside to see a rainbow or sunset, or some other incredible act of nature. Over time I met her husband, and he had that same spirit of life. He was the musical director of a group that criss-crossed the US playing to crowds of 10 or 10,000. They were just happy playing music. You would have loved this couple. Everyone did.

I became close to the couple and would often eat at their home or go to events with them. I honestly don't remember the circumstances when they told me they were HIV+, I just vividly remember a later encounter with the wife who told me how she had received the news she was HIV+. She had gone to get tested, and when she came back to the office to get the results she knew something was up. There were two people waiting for her in a room to deliver the news. She didn't remember anything they said after she heard the word positive. She didn't remember driving back home. She just remembers sitting in her garage, wondering if she should just end it all right then and save herself the shame (yes, there was still a great deal of shame and embarrassment then) and the pain, and just take her life, and get it over with. She sat there for what seemed like hours before some voice told her to get out of the car, and go inside the house. That everything would be all right. She never again thought of taking her own life.

Within about six months of her notification, she met her husband. He was already HIV+. He never told me, and I never asked how he contracted the disease. By the time I met the couple, the husband already had full blown AIDS. At that time AIDS was all about AZT and T-Cell counts. The husband had so many medications that did so many things to his body. His life was controlled by those medications, but you would never know it by being with him. He was so full of life and cheer. Even though he was living with AIDS, he knew there were countless other people who had worse lives, and his goal was to make those people and their lives a little better and a little more hopeful.

From his wife I would hear the stories of the night sweats so severe that sheets would often be changed two or three times a night. Uncontrollable shaking or the cough which would never go away. When the husband lost the sight in one of his eyes from AIDS, he laughed it off and said that was his bad eye anyway, and now he didn't need glasses.

I remember the first time I saw him in the hospital. He had some really bad infection and everyone thought he was going to die. He just said it wasn't his time yet, and spent most of his efforts on cheering the people who came to visit him in the hospital.

It was during this period that I became really ill. I was working 18 hours a day, 7 days a week, and my body finally quit. Who was there to take me to the hospital? Yep, he was. He was also the guy who snuck me in real food to eat, visited me everyday of the week I was in the hospital, and quizzed the doctors about every medication they were giving me and if they were really necessary. With all the medication he took daily, he was an expert.

I think it was about three months after this, that he was forced to quit traveling with the group because it was just becoming too difficult. He tried to make up for it by recording what I think he knew would be his last album. In between more frequent hospital visits he would find whatever time he could to record. He wasn't a singer, just a musician. A great musician who could make you feel every emotion through his work. When you listen to that last album, you can feel every range of emotion a human is capable of feeling. He takes you on that final journey of joy, and pain, and hope right along with him.

Within a week of the completion of the album, my friend passed away. His wife was much more fortunate. She is still alive today. For her, the drug cocktails came along soon enough to save her. After her husband died though, she didn't know there was a breakthrough in AIDS drugs on the horizon. She decided that if she was going to die, she was going to die on her own terms much as her husband had. She quit her job, sold everything she had, and decided to travel the world. She wanted to live life and she has. It has probably been close to five years or so since I have heard from her. I know she is alive though from mutual friends. When she finally realized she was going to be able to live with HIV, she decided that she needed to go back to also living a regular life. So, she lives a regular life, goes to work and to the mall. She goes out with friends, and does anything a normal person would do, with one caveat. The last time I spoke with her, she said that nothing could be truly normal because of that visit to the doctor's office so long ago. That feeling of a guaranteed death sentence never quite leaves you, and can never allow you to be completely normal again.

I have one tattoo on my body, and it is a tribute to this couple, their bravery, and their love for others, despite this guaranteed death sentence. I loved them then, and I love them now.


kellysirkus said...

May the Spirit of those bright lights shine bright.

I WISH that nobody had to live with AIDS

The only people who should feel SHAME are those politicians that refuse to devote the appropriate funds to find a cure for this insidious virus.

EmilyR said...

Why aren't you in contact with her?

kelsey said...

Thanks for sharing this great story with us Ent.

Judi said...

Enty, please reach out to her again this holiday season. You are a solid link to a happier time in her life. It's part of her history and important; it helps to ground people when they have that.
Today's posts will always be my favorites. Thank you, Enty.

Trix said...

Great story...

But it has me convinced once and for all that EL is NOT a man.

Condolences out there to anyone who has a friend or loved one afflicted with, or has died of, HIV/AIDS.

Sis said...

Wow...thank you for sharing!

Customer said...

trix - it's funny you say that. I was thinking that Ent seemed like a gay man because he notices a lot of things fashion-wise that straight guys don't. He's also very considerate and conscious of how other people are treated, which many straight guys are not. For a lawyer, that's a stretch. For an entertainment lawyer, an even bigger stretch, lol. You bring up a good point, that Ent is a female, hmmmm.... said...

In the end, it really doesn't matter who ENT is, it's what he shares with us that is important.

Kate said...

that story is beautiful...thank you for sharing, i'm sure it will provide hope and inspiration to many.

EmilyR said...

trix - that's so funny. I had the same thought as I read about the tatoo.

Sharon said...

Thanks for sharing Enty. You had asked that we share in return and I will.

You see, I am a lesbian in my mid-forties. I came out in the mid 80's and walked straight into the gay community as it was being ravaged by AIDS. Just about every male I knew at the time was either HIV positive and living in fear or fighting a desperate battle against death.

I lost so many people close to me over the next few years that I had a funeral suit dry cleaned almost weekly. My story, however, is about a woman. Actually, two women. One of them is me.

Lesbians, at the time, viewed HIV/AIDS with an almost smug sense of security. AIDS education workers were constantly trying to raise awareness among gay women but the pervasive view was one of bemused indifference.

Dental dams were a running joke and the mere thought of even using one elicited hysterical laughter. Women continued to be promiscuous blithely ignorant in the belief that as long as they weren't intravenous drug users, bi or into blood play they were so very safe from infection.

Now, in my experience, there is one undisputed truth about lesbians that I will share with you. That is, if you sleep with a woman there is a U-Haul containing all her worldy possessions appears at your door the next morning. This is especially true if you are a woman of some means. However, there is one loop hole to this rule and that exception applies if said sexual activity occurred with more than one woman.

I was athletic, played a variety of sports and had a wide circle of friends. It was one of my friends from volleyball who I am going to tell you about.

She was a loud, boisterous and incredibly gregarious woman. Her entrance into a room was never without notice because she was invariably hollering greetings to everyone present. And in little to no time at all the party invitations began. She adored having a house full of women and made sure she was always fully stocked on the latest party favours. It was at her house that most people exercised their options on the multi-partner clause for U-Haul exemption status. I will call her J.

J caught a cold. Her girlfriend at the time was this tiny, timid little creature who doted on her (they always struck me as Laurel and Hardy-ish) and tended to J's cold as best she could. J would come to volleyball but as time passed she was so congested, feverish and out of breath that she simply sat in the stands and watched quietly. It was so out of character for her. The girls got concerned and convinced them to go to a hospital and get this cold checked out.

For two weeks, no one heard a thing.

And then one night the tiny little girlfriend appeared at volleyball alone, ashen and shaken. She squeaked out the news that her lover had died of pneumonia. We all looked at one another, stunned, but the little girlfriend continued. She said that once J had died it was decided to conduct an autopsy because the pneumonia had been so aggressive. The results of the autopsy revealed that J actually passed away from AIDS-related pneumonia. No one, not even the doctors, thought to check BEFORE she died because she was a lesbian. You see, it wasn't just us that thought there was little be concerned about.

You could have heard a pin drop in that gym.

No one, not one of us, had ever heard of lesbian with AIDS. We were all so convinced we were exempt from the "gay plague". And then as realization sunk in, fear started to run through the crowd and the little girlfriend said, "I got tested. I think those of you who have been in contect with J should too."

My mouth instantly dried of every trace of spittle and my throat tightened. I now knew how the guys felt.

I am not going belabour the story. Suffice it to say my test turned out to be negative and started me on a lifetime of regular testing no matter how low risk I felt.

Here in Toronto there is a large memorial remembering those who succumbed to AIDS since 1980. You can find it in the park at 519 Wellesley Street in an area of town affectionately referred to as the gay ghetto. Every year, on this day, World AIDS DAY, at the annual Walk For AIDS and at the Gay Pride Parade I go that memorial and run my fingers over the name of the only woman found on the list prior to 1990.

DNfromMN said...

Great stories, Ent and Sharon. I empathize with your losses. said...

thank you Sharon, that was a moving story. How did she get the disease, surely she must have had a blood transfusion at one time, or either a bi-sexual lover?

jax said...

from the time we were little kids KC said he wanted to go out with a bang. he was a talented stylist with a promising future but after he found out he was HIV+ it derailed him. he got into drugs and spent time on the street. he felt like his life was a death sentence and let the worst of life take over. by the time he saw what he was doing to himself and had cleaned up it was too late,he had contracted Hep C and his organs were shutting down. in canada if you are HIV+ you go to the bottom of the list for transplants if you're lucky to get on the list at all. three short weeks passed and KC's family gathered around his bedside waiting for the awful moment to happen. we all had thought 'KC' was gone and gasped as his eyes focused one last time on each face and then with a slight ping of light he was gone.he was 28. we all sat silent for about 10 seconds and then jumped when we heard the first canon of fireworks in the park next door. it was canada day, 10pm. we looked at each other and stifled a chuckle..KC had indeed gone out with a bang. that moment is so surreal,you are so completely in shock and grief but you are relieved to see them without pain.

i miss my brother dearly everyday.

Please do what you can in your own way to help.

Sharon said...

*hugs* Jax, my heart breaks for you.

Brenda, there was some confusion as to how she had contracted the disease. There was some discussion of possible intravenous drug use but no one ever really pinned it down.

Also, I had a bit of a mind lapse, the 519 Centre (where the memorial is) is on Church Street not Wellesley. But the major intersection guessed it, Church and Wellesley.

mngddess said...

Really a toching, beautiful tribute, Ent. Thank you for sharing.


mngddess said...

Jax, I am so, so sorry for your loss.


bionic bunny! said...

enty, sharon, jax:
i'm sending warm, loving bunny hugs (because they are the best kind) out to you for your losses. and to everyone on cdan with similar stories.
i don't enjoy these type of "holidays", but i believe it DOES bring us closer to each other, and reminds us to try to make even a tiny difference, wherever we can.

how many of you are old enough to have been sexually active when this new disease was "discovered"? i divorced the asshole (some would say "first husband") in '84 with a toddler, and remember the early news reports and how people reacted to them. how the city of san marino (veddy, veddy wealthy) wanted to ban "the gays" from (of course) the public pool AND public library. these were scared people with lots of money and blinders, and no information. i was 24.

anyway, God bless us, every one. line up on the right for bunny kisses, to the left for bunny hugs.


onecrazypeanut said...

Ent...what a bittersweet memory. Please look for her. xoxo

Everybody...thank you for sharing.

Sending much love.


Cooper's Mom said...

Wow, first off, Ent that was such a moving story/tribute that it actually brought tears to my eys. Thanks everyone for sharing your stories, and i truly am sorry for your loss.

I have a good friend back home in London and we've been friends for 10 yrs, we even share the same birthday. He is an absolute lovely person, one who lights up the room and your life. When we were 21 he tested positive for HIV. To say he was shell shocked was an understatement. I remember him just staring straight ahead with his lip wavering saying 'but i'm always so careful...'. He really tried to put a brave face on it, refusing to discuss it after he told us. He threw himself even more into the party scene and inevitably his drug intake escalated. A few months after he was diagnosed i moved with my hubby to Australia permanently. I was lucky enough to go back home this year (my first visit since moving to oz) and spend my birthday with this special friend. We went and painted the town red just like old times. It was a really wonderful evening and we had the best fun. But there is always a sadness in his eyes now. Only once through the night did he comment on his situation (i knew not to ask too many questions)when he came up to me in the club and put his arms around me and said "i can't belive we're 25 now i feel so old." he then looked really sad and just said "this isn't how i thought my life would turn out..." and my heart bled for him. He is a wonderful person and i truly wish that noone had to live with this disease and i pray that one day a cure can be found.

Greg said...

This story made me cry. I am glad your friend is alive and living her life. One of the best things about 2007 was discovering your blog. Its something I look forward to daily. Thank you for sharing this story with us.

Ashli in NY said...

His is not my story tell
but I wish him peace, and to know he is thought of every day

Sylvia said...

That was a beautiful story.

Try getting in touch with her to find out where she went and how she is doing.

Kara said...

Jax, Sharon ... wow, there's a growing contingent on Canadians on the CDAN board.

Sharon, all of my friends affectionally refer to the College and Wellesley area as "Rainbow Village".

During the mid-ninties, I went to university only a couple of blocks away from "rainbow village" and lived in student housing. A 2nd year student was an advisor on my floor, as well as a closeted gay man.

Soon into the year, evidence of ill health started to appear. He lost weight (although he was already considered skinny), he developed lesions on his face and mouth, he was constantly tired and coughing. He denied anything was wrong - he just had the longest, craziest cold ever.

He died sometime around Easter.

There was a lot of secrecy as to what actually happened. His parents' story didn't add up with the symptoms I had seen.

No one wanted to hear what my opinion was. Even then, AIDS was something to be whispered about in private and nothing more.

I hope acceptance has come a long way in the past 11 years.

Rare Avis said...

Thank you for sharing your story. I went back to college because of stories like yours. I think that I can honestly and truly help. It is hard, lots of crying and swearing. It is expensive, but I hang in there. I have worked on breast cancer research, and diabetes research teams. Nothing breaks my heart more than when someone approaches me & asks "what can I do?" I, we, are working on it, oh are we ever.


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