Tuesday, November 30, 2010

Remembering.....

It was Christmas 1983, while I was in Hawaii that I first started talking about what would soon be known as AIDS. I was on vacation there where my cousin lives in Honolulu. I had heard of this disease which was killing gay men and killing them fast...It was called GRID, Gay Related Immune Defencity and I was scared for my dear cousin Raymond. He was young and gay and I asked him about this disease? He told me that it was ok, that it only hit Gay men in San Francisco. No need for me to worry, just have fun! Still, I worried. I kept it in the back of my mind... Throughout the week I met more and more of his friends who assured me that I would never even know of anyone who would get it. Relax, they said...Enjoy your trip...


Kane was one of Raymond’s best friends, he was a super great guy...He and Raymond decided that I needed some “fixin up” since I was from Arkansas. So one day they closed the salon, I went in as a brunette and came out as a blonde! Then they took me shopping...It was quite the experience and it was fun... Back home in Arkansas I caught HELL for bleaching my hair! Just to think that would be my biggest problem...How little did everyone know? Kane, Raymond’s friend, and I stayed in touch. He looked just a little weak to me but, he blew it off as a cold...Nothing to worry my new pretty blonde hair about, he’d be just fine in a few days... So, on with my life went. Potty training my daughter, wondering when the snow would ever melt...little things like that. Life was normal...So, I thought. One day Kane called me and we talked for a while and I knew something was wrong. He had a funny cough, he said that it was just a little hangover of his cold and that he was fine...we hung up but, I still worried. We didn’t have home computers back then and only a few magazine articles on this new disease and every now and then a TV news report. It was still in San Francisco but a new case had been found in Los Angeles... Still, they called GRID.

In the spring, I sold a house to a guy who would be moving right in to be closer to the hospital where his brother was. He was a little quiet about what was wrong with his brother so I didn’t pry. I just sold him the house. In the meantime Kane had called again and I missed his call. When I called back his mother answered and told me that Kane had died the day before. I was stunned and heartbroken. He had died from that new disease that he had contracted while on a visit to “The Mainland”, San Francisco...I was stunned, heartbroken so I called my cousin, Raymond. He didn’t even know what he had; now things were starting to look a little different, a little bit scarier. I devoured everything I could get my hands on about AIDS.

I had seen Gordon the next day while we were at the closing on his house and he said that his brother was not any better and was getting worse and the Doctors couldn’t find the answers...I took a huge risk, I asked Gordon if his brother was gay? Back then you never, ever talked about that kind of thing...He took a long breath and started to eyes started to tear up...I stood still and held my breath! He then asked me “Why do you ask?” I stumbled and stammered along... I then told him about this new disease, this horrible disease that was killing young men. He said that he would be in touch... I was still stunned... I was thinking that he was going to call my broker and have I fired...I thought “what have I done”? So, I waited and held my breath. What was I going to be able to do in the first place? Why did I shoot my mouth off like that? Finally, His Doctor called me and asked if I could come to the hospital and take a look? Tell him what I thought? I wasn’t a nurse or medical professional. I just played one from time to time. His doctor was a good friend of mine so up to the hospital I went... I remember asking God not to let me die...I was scared…Back then the only thing we knew about what would soon be known as AIDS was to cross our finger and pray..Maybe God would not let us die?

I walked in and he had “the look” and he was very close to dying. The nuns came in and they were scared, too. Sister Mary Werner was the head nun and hospital administrator... She asked if we knew anything. I asked his doctor if he could test him for this new disease that he had never of. It was called AIDS, he had never heard of AIDS. He told me that he didn’t know how; what in the world could we do? So we called the CDC, Centers of Disease Control, in Atlanta, Georgia. But, by the time they got back to us it was too late, he was dead. Now we had a bigger problem. What to do with the hospital bed and all of the things in the room? Sister Mary Werner didn’t know...They needed me to call the CDC and ask... Why me, I wondered and Sister Mary Werner told me that it was ok, that I knew more about this disease than anyone. Really, Me? Oh, well why the hell not! The CDC instructed us to burn everything that had come in to contact with the person who had died from AIDS. We did. We were all sure that we had contracted AIDS from him...We would look in the mirror to see if there were any changes? One of the symptoms was night sweats...I had them one night! Oh, my God, what was I going to do? I had a daughter to raise. I didn’t want to die...I was only 25 years old... Oh, God what would I do? Then I noticed that my electric blanket was on. My cat had stepped on the controls in the middle of the night and turned it on! No wonder I was sweating! That is how paranoid we all were. During that same week my friend, Bonnie was in Little Rock at the University of Arkansas having her tongue removed because of cancer... She was only 32 and had never smoked. It was a very tragic week for all of us...

While at the hospital with Bonnie, I had become a world champion hall pacer. I could not sit still so I paced and I paced and I paced…I had been watching this particular room on the cancer floor. It had a big red bag taped to the door warning no one to go into that room...WARNING...CONTAGIOUS!! It was a bag that covered the entire door and I also noticed that the nurses’ would draw straws to see which one of them would have to go in and check on him…Best two out of three..I had never seen nurses act that way before. So I paced a little closer to the nurses’ station... They just ignored my pacing. That is what I wanted them to do...As I had suspected he had AIDS. No one would go into his room, not a nurse, not a friend, not a family member. NO ONE! His food trays sat in a line out side his door in the hallway for all to trample...Bonnie had by then gotten settled back into her room and had a feeding tube and no way to speak... I could understand her because I knew what she would try to say but, she could write...boy, could she right! And did she ever? I was her interpreter. It was to say the least, a very bad week. Now you probably already know what I did, because you probably know me by now, I snuck into his room to see what I could do for him. I didn’t even know his name. I stood at the foot of his bed and asked him his name? He was very near death. I knew that, too. He told me that his name was Jimmy and that he wanted his mama. He was so very weak that I could barely hear him. I was scared of AIDS, too but didn’t let on. I told him I would get her for him. Whew! That was simple enough. He drifted back off to sleep. So, I marched right up to the nurses’ station and announced that he wanted his mama. They scolded me first for going into that room and then they all laughed! They said “he has been up here for six weeks his mama is not going to come up here. Nobody’s coming up here “WAS I CRAZY? Well, I guess that I was a little crazy and probably still am.

But, I walked right back into that room and when I did he looked at me and held out his hand and said “oh, mama I knew you would come”. At that moment panic rushed all over my body. The nurses’ reminded me that I was taking a huge risk going in there and that I was on my own. Panic began to set in real hard.  But, all of a sudden calm spread over me and I stayed..for 13 hours I stayed. What else could I do  when he reached out for my hand and a tear ran down his face. He was so dehydrated that it was all that he could muster…I was stuck. What was I going to say what was I going to do. My mind raced for an answer...What in the world had I gotten myself into? What was I going to do now? I asked God for help and strength. I reached out my ungloved hand and took his hand in mine…He started to cry...What was I going to do? What was I going to say...I stayed still as a little mouse, glued to the floor. He sobbed some more as I stood there. I was afraid to breathe. He still had no tears and I started to cry for him. My daughter was at her daddy’s house for the weekend. So, I stayed with him for thirteen hours while he died. At one time while he was sleeping I went out into the hall and scrubbed myself down thoroughly and went to check on Bonnie. She wrote for me to stay with him. That she would be ok. He needed me. I knew that was what God was asking me to do. So I went back into Jimmy’s room, pulled up a chair, waited and watched a man die for the second time in my life. The first one was my daddy, when I was only five years old. Daddy died on Thanksgiving Day 1964 at home with just me and my mother. So, many years later I vowed right then and there that no one with AIDS would ever die alone if I had anything to do with it. And I kept my word.

Not one single nurse came in while I was there. I guess they were relieved that they didn’t need to check on him anymore. That I would come and get them, if he needed anything. All he needed was for me to sit there while he slipped away. He just didn’t want to die alone. Who would? The nurses asked me what funeral home? How was I supposed to know that? I asked for his mother’s phone number? They gave it to me. When I called his mother she answered the phone and I told her who I was and that I was calling about her son. She hung up on me. So, I called back and told her if she hung up on me again I would put his obituary in her hometown newspaper and list his cause of death. I had her full attention!..little did I know she didn't care.. I told her that id she didn't care what happened to her son I certainly did... She told me that she did not care who I sent him to and that she did not even want him back to bury him. To her, her son had been dead for years. She hung up the phone. I didn’t know what to say. All of the nurses’ were hanging on to every word of our conversation. I did not say those words to her to be mean. I knew that she was the right woman; I just didn’t know that she could be so cold hearted. I also did not know that throughout the next fifteen to twenty years I would have that same conversation over and over again. I would be known as The CRAZY AIDS Lady.

Billy, pictured above, was my youngest AIDS Patient..Jimmy was my first and Gordon's brother was the first AIDS patient known to be in Hot Springs.

I called every funeral home in the state of Arkansas and no one would take him. I finally got a hold of a black mortuary in Pine Bluff, Arkansas. They said that they would only cremate him. I didn’t have the money to spend on a cremation. The hospital had a fund and they paid for an indigent cremation. I had to call his mother one more time for permission to cremate. She gave it and told me to do whatever I wanted to with his ashes. The funeral directors came in these horrible moon suits. They looked like they were from outer space. They put him in a bag and carried him off without one shred of dignity. They came after hours and left out the back door.. It was all a big secret. Jimmy’s room was closed for a many days. No one knew what to do? In the meantime, Bonnie continued to get better and went home. Her fiancĂ© could not deal with her surgery so he packed up and left her. She had only had surgery two weeks earlier. Allison came home from her daddy’s and I tried to get back to normal as best as I could. Weeks later a box of ashes came in the mail. I didn’t know what to do with them so got a donated cooking jar from a local potter and i dug the grave and I buried him on top of my daddy’s grave so that no one would know what I was doing and I would remember where Jimmy was. If word had gotten out that I had buried an AIDS patient, much less taken care of one; there was not a judge in the State of Arkansas or in America for that matter who would not have taken my daughter away from me and given full custody to her father and I knew it. I was back to being scared.

So now word got out that there was this crazy lady in Hot Springs who wasn’t afraid of AIDS patients and the calls started coming in. I had promised God that if he didn’t let me die I would take care of Jimmy. I hadn’t said anything about the rest!

Call after call after call came in and they all were frantically asking for my help they were dying and needed help. I didn’t know what to do? I didn’t know of a doctor who would see them, I didn’t know of a medicine to help them? But, I would listen to their sobbing phone calls in the middle of the night. I would pray with them over the phone. Friends would call about friends. Patients would call about themselves and mother's would call about a friend of a friend of a friend. The more friends they would put in the more I knew it was about them.

“I will try and see what I could do”. I was over whelmed, I was still scared. I prayed and asked God for guidance? I asked God ‘Why me” and God answered..”Why not you?” He does have a way about him! And so that is how it all began.. Over the next fifteen years or so I would care for over five hundred men and women while they were dying from AIDS. Many years later  I became the Executive Director of HPWA, Helping People with AIDS. Then much later I was asked by the President of the United States of America to be only one of twelve international delegates to the First White House Conference on HIV/AIDS. I was a consultant to the American Physiological Association. But, I digress. I found a doctor who would see them after hours and in through the back door. Not a word was to be spoken about what was going on or he would quit. If his patients knew that he was seeing AIDS patients they would all leave his practice and I knew that they would, too. The news stories got even worse and fear and panic was spreading... In March of 1985 the Western Blot test came out to test for the HIV antibodies. We only had one drug for the treatment of AIDS it was AZT, it was the best anyone could do...I saw no change in their condition. But, it gave them HOPE and black fingernails.

The story was the same for the next few years. Person after person would be rushed to the Emergency Room in a life threatening state and they would die very shortly from AIDS... I knew everyone of them. The hospitals would call me in a panic to get them out of their hospital...PERIOD! Hospice asked me if I was kidding. Take an AIDS patient, was I CRAZY? I finally found a pharmacy who would order their medicine but, I would have to pick it up. And who was going to pay? That was quite a dilemma. We all just stood there shaking our heads and wringing our hands. What WERE we all going to do? I called Then Governor Bill Clinton asking for funds to pay for medicine...He said yes without hesitation!

During Christmas of 1986 There was an AIDS house where about five AIDS patients had moved in together to try and take care of each other. That year I went to local businesses who I knew would help and asked for donations for these AIDS patients last Christmas... A Christmas tree from one, Christmas cards form a Hallmark Shop, so that they could sent them to their friends and family one last time. Stamps, from a Realtor. Little things that I knew would make a big difference. I gathered a pickup truck load and took them over to them on a Sunday. I also took the most important thing in my life with me, my daughter, Allison. She was only four years old at the time. I told her that she could not tell anyone what we had done or who we saw or what they had. I felt so guilty. For two reasons, One I was taking my only child, my baby into a house where I knew people were dying from AIDS and two, I was teaching my daughter to be kind, loving, and giving and asking her at the same time to keep a secret. A BIG SECRET! How could I teach my daughter all of this good and at the same time tell her it was a bad thing to tell anyone? We arrived at the house with a big surprise for everyone...CHRISTMAS!! We unloaded the tree and all of the trimmings. EVERYONE cried. We all knew it would be their last Christmas and they knew that no one would care. They were wrong. I cared and my daughter cared even thought she was only four years old. Then came the moment of truth; which I will never forget someone offered my daughter a glass of Coke. WOW, my daughter would have to drink out of a glass that they had drunk out of? I still had my misconceptions about AIDS, we all did. But, my daughter drinking out of a glass? She looked at me? I looked at her? The glass was at her hands…what would I do? Would I let my daughter drink out of that glass? Here I was teaching that AIDS could not be spread by touching anything that an AIDS patient had touched. It was safe to drink out of a glass that an AIDS patient had used and washed. That soap would kill the virus... Now was my time to put up or shut up! I told the guys my fears for my baby. I could do it but, could I let her drink out of that same glass? They all understood, really they did. My honesty just came out. We all talked about the fears and living with AIDS... My daughter took the glass and drank from it. we cried..that one barrier had been broken and it was a big one and we knew it.

On that Sunny, Sunday afternoon in December 1986 one of the young men taught my daughter how to paint using water colors, one of those men taught her how to make ornaments for the Christmas Tree out of construction paper and glitter and all of those brave, generous men taught us the real meaning of Love, Faith and the true meaning of Christmas! Two weeks later both of those men were dead.

On this eve World AIDS Day of 2010, I look back at all of the courageous men and women who have fought the battle and lost their lives but, blazed a trail for future generations to come. They volunteered themselves as human guinea pigs. They brought about major changes in the health care system. Because of these very brave people, drugs go through clinical trials much faster than before. New drugs used to take over 10 years of clinical trials. Now it only takes a few years to come to market. They didn't have time to wait. Now we have privacy laws, HIPPA came out of the AIDS crisis. Universal precautions came out of the AIDS crisis. no lick stamps and self sealing envelopes and the whole world changes because of a simple virus called AIDS. Compassion came out of the AIDS crisis. Now people are living with HIV/AIDS and thriving. No one even knows. They have lives and careers, families and HOPES and DREAMS. AIDS is no longer a death sentence to be lived out in isolation from what used to be their friends and family. Knowing that you were going to die no matter what. I read last week that there is now a drug out to help prevent the spread of AIDS. Family’s no longer having to live in shame and fear that their friends, family and church members would shun them just because the child of theirs, which they loved and cherished, had a virus called HIV/AIDS. We have come a long way from those dark months and years... There is still a long way to go. On this World AIDS DAY I want to remember all of those who have died and all of those who are living with this virus. You are the brave ones, you are the strong ones and you are the keepers of kindness and honor and love. You taught us to live like Christ lived, accepting, loving and caring for each other. Today I honor all of those who gave their lives so that someday, somehow how we could find a cure for this disease and we can all live happily ever after every now and then.

4 comments:

  1. Oh Ruth, while I could let this beautiful post make me sad, I refuse to. Just like you, back in the 80s I refused to believe that those suffering with the disease should be treated like pariahs. I can't tell you how many churches I up and walked out of because of their refusal to understand that Jesus' life and teaching often had him in the company of those on the margins of society.

    Back then I always knew there were many folks like you - in big cities and small towns across America - who were doing the right thing and leading the way as an example of how we care for each other. You were - and are - one of those heroes.

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  2. Ruth, Once again you have told an important and touching story. Thank you for caring!
    Beth

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  3. Ruth, Once again you amaze me. I have truly never known a person as loving and giving as you. God knew what he was doing when he called you to serve him as an AIDS activist. You had to be a special person for God to ask you to do this. Your compassion is a true gift. Your daughter, Allison, has lived a life that not many have. She has learned kindness and compassion from you and your AIDS patients. She is a lucky girl . I hope her the best that life has to give and I am so happy to call you friend.
    Janine

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  4. Ruth, all I have to say is WOW I loved your story and it truly touched my heart and brought tears to my eyes.I have lost a very dear friend to AIDS,and I was very lucky to know him and have him in my life.Thank you for all of your hard work.RM

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