Jim

My little brother...

My little brother is beautiful and I love him.  He is the preverbial tall, dark and handsome guy.  He is so smart and funny and my children love their uncle.  He has End-Stage AIDS and is all alone.

He doesn't know that I know.  He told my mother not to tell me because I am "his hero" and he doesn't want me to look at him differently.  I could never.  All I want to do is protect him and make him better and I can't.  I hope he tells me soon.  

Two days ago I saw him as an adult sibling who I love very much.  Now that I know, I can only picture him as the little kid who always wanted to tag along and that I had to take up for from time to time.  He's my baby brother.

I want to help him along his journey and it is killing me to not be able to rush to his side.  I feel his soul crying out to me but he is hiding behind shame he need not have.  

"Little brother, there is no need to hide your pain.  Don't you know that?  Reach out to me and I will hold you steady."

"Can't you hear me calling?  I know it's cold and dark.  I know you are alone.  You don't have to prove how brave you are.  I need you now as much as you need me.  We can run through the woods again as we did those many years ago as children.  I can help you up the really big hills and I won't leave you in the middle of the stream.  You can reach out and I won't let you fall.  I love you little brother. We can go back where there was no pain and I'll walk with you all the way home." 

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Nomzamo

Nomzamo was an orphan. She was a kind, loving and quiet girl. She had friends but everything about her was confidential, she was very private. She always kept her problems to herself. She was always happy, never sad, even if you did something to her. She would just keep quiet and say nothing.

She had a son, whom she loved very much, but she could not support him financially, because she did not have a job. Because of this she gave her son to his grandmother, her fathers mother. Her grandmother took him and treated him as her own son. The boy is sick, he has TB. Nomzamo did not tell her grandmother this, She just gave her the baby and said nothing about him being sick. The boys father was still just a boy himself, he was still in school. He did not have money to support the child and the boys grandmother is working only 2 days a week, as a domestic worker.

When Nomzamo started to get sick, she did not tell anyone, she did not even tell her cousins, whom she was living with, what the problem was. She started getting thinner and thinner. She would get so sick and vomit blood, but still she did not tell anyone. She refused to go to the hospital. She said there was nothing wrong with her. She started showing symptoms of a person who has Aids, but if you asked her about it, she would get angry and would be mad at you. She never liked talking about things like that. She pretended to be herself but we could all see something was wrong. She was no longer in a relationship with the boys father.

Then on the 2nd of August 2009 on a Sunday, she was vomiting blood again and it didn’t stop. Her neighbours took her to the hospital but she didn’t even get there. She died on her way there. It was very painful for all of us because she was too young to die, she was only 22 years old.

She did not have a funeral cover or a job, or any money when she died. Her cousins that she was living with did not have work either. She lay in the mortuary for 3 weeks with people not knowing what to do. We went to businesses to ask for money to bury her but they all said they would rather give money to the living, not the dead. And so we, in Imizamo Yethu collected money amongst themselves, each person gave what they had and on the 22 nd of August, last Saturday, she was buried.

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Nancy

Mom & AIDS

One evening, I was surprised and concerned about my father’s late night visit to my house.  He said he had something to share with my husband, Floyd and me.  I suspected it was probably about my mother who had been ill for some time. Doctors were baffled by Mom’s condition. That night Dad said that Mom had been tested for HIV.  Shocked and frightened, I tried to mask my fear as I didn’t want to upset Dad.  He continued to explain that one of the doctors noticed in Mom’s medical records that she had a blood transfusion during her heart bypass operation in 1983. The doctor thought her symptoms of night sweats, swollen glands, cough, and unexplained fevers might be symptoms of HIV infection. The doctor asked her to be tested for HIV. Mom was scared, but realized she had to find out if she was infected with the AIDS virus. This was in 1988 - five years after her surgery. Dad told us that the final test results wouldn’t be in for another week.  He also made it clear that if the test results came back positive we were not to tell anyone. This had to remain a secret. 



A week later, I walked in the kitchen and noticed the fearful expression on Floyd’s face.  The look on his face terrified me. He told me that Dad had called and told him the second HIV test had come back positive.  No more wondering. Mom was infected with the AIDS virus.  A New York City blood bank confirmed that one of the donors Mom had received blood from had AIDS. I was angry that the blood bank hadn’t contacted her at all.  She could have easily infected my father. Thankfully, he wasn’t infected. Also, there was a great deal of fear and stigma surrounding HIV/AIDS in 1988.

A few minutes after Floyd told me the dreadful news, my son came down stairs to ask me a question about his homework. I had to pretend that everything was okay.  But I was now living a nightmare! As soon as he left, I grabbed my coat and told Floyd I had to get out of the house.  He was worried about me and drove me to an empty parking lot. I kicked the stones and kept crying, “NO, NO, this can’t be happening to Mom.”  She was a 66-year-old grandmother – certainly an unlikely candidate for HIV infection. After an hour or so, I finally pulled myself together and we drove back home.  

When Mom was told of her HIV infection she was totally devastated. She feared people would reject her if they knew about her illness. So my parents decided to keep it a secret. Only a handful of family members were told of Mom’s infection.  My mother was fearful of having friends visit her. She felt she might be contagious, even though doctors reassured her otherwise.

My husband and I couldn’t even tell our two teenage sons. We were abiding by my parents’ wishes. Some of my close friends suspected something was wrong, but I couldn’t tell them that Mom was battling the AIDS virus. I hated pretending everything was okay.

Even though I felt torn apart inside, I realized that I had to find a way for Mom to cope with her HIV infection. She was suffering from insomnia and anxiety. She loved listening to me playing piano. So I recorded her favorite songs on my piano and made tapes for her. The music cassettes seemed to lull her to sleep. I also made a meditation tape in which she would visualize her thymus gland producing T cells to fight off opportunistic infections. Dad was amazed because he never thought Mom would agree to meditation. He said she would always have those earphones on her head listening to my tapes. I think this helped her feel she had some control over this vicious virus. The foot massages I gave Mom provided relaxation.

I still hid my emotions as best I could. It was difficult teaching piano and putting on a happy face when I knew my mother was dying of AIDS. Mom would often say, “I feel like a leper.” One day when I was giving her medication, I accidentally dropped a pill on the floor. I said, “Mom that pill is dirty. I’ll give you another one.” She hung her head and replied, “Nancy, it doesn’t matter. I’m already dirty. It hurt me to hear her say those words and to think of herself as unclean.

My husband was so very supportive, but the constant whispering was beginning to cause a strain in our marriage. Two years into Mom’s diagnosis, we finally told our two sons. They were saddened about their grandmother’s illness. Fortunately, they had learned about AIDS in their health class. I had also educated them at home. At least we didn’t have to whisper anymore. I still felt lonely and needed love and support from my friends.

Mom lost her battle with AIDS in 1991 at the age of 69.  Two months before she died, she said, “Nancy, I don’t want anyone to know I have AIDS now. But after I’m gone, I want you to write about this disease that is killing me so others don’t have to suffer in silence like we have.” I honored Mom’s wishes and gave her a voice in my book, “A Burden of Silence: My Mother’s Battle with AIDS.” Mom was one of the very first women infected with HIV.  She was my hero. In her last days, I would play the song, “The Wind Beneath My Wings.” I told her this would be our connecting song, and when it was played we would be together. Her chest seemed to heave with emotion. She died three days later.

A few weeks after my mother’s death, I desperately needed someone to share my burden with. I called a support group in my state. I spoke to a woman who told me how I could keep my mother’s memory alive. She told me about the AIDS Quilt and said that they would be having a display at Dartmouth College in Hanover, New Hampshire in 3 weeks. I didn’t know how I would get it done it time. I also wasn’t the seamstress Mom was. Yet I knew I would find a way to make a panel for Mom.

Since Dad still wanted to keep it a secret because he feared discrimination, I put the word “MOM” as her name instead of her real name which was Irene. I also put a heart on the panel with the words, “I MISS YOU.” I used some material from her clothing to use on the panel. I took some leaves from her skirt and put it on the heart. I also put two of her potholders to reflect her excellence in cooking. At the bottom of the panel, I put the words, “It hurts to know you suffered in silence.” This is the message I want people to see as the panel travels throughout the world. I finished the panel just in time and my family and I brought it to Hanover, New Hampshire to be part of the larger AIDS Quilt. Each panel maker is asked to write a letter about the person they are remembering. I brought my letter that day.
 The following letter was published by AVON books in “The NAMES Project Book of Letters.”
                                                               

 “Mom”

This panel I made is a lasting memorial in memory of my mother, who contracted AIDS through a blood transfusion. She suffered in silence because of the social stigma of AIDS.

Please don’t make these victims embarrassed and ashamed of their illness, but reach out in love and embrace them. When we begin to love, we can begin to heal one another.

My mother loved the ocean, palm trees and her beautiful flower garden. I have faith she is now in a gorgeous garden surrounded by the peace and love of God.

You were very brave, Mom, and it hurt me to see you suffer. You were a wonderful mother who taught me so much about life.

I love you and I miss you, Mom. I pray that people will become more compassionate and understanding of the tremendous hurt and loneliness these people and their families endure.

“A loving daughter from New England.”

Nancy, Maine, USA

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Anna

Before I was two years old, my father had pneumonia 3 times in nine months.  He had a huge fear of needles and hated blood tests, but finally at the urging of his physician, he got a full blood panel work-up.  The doctor knew the diagnosis based upon his results, but she told him it was either leukemia or AIDS and said they needed more tests.  He was subsequently diagnosed with AIDS and with a count of 16 t-cells.  In 1993, an AIDS diagnosis was a terminal diagnosis. He fought for life until my third birthday because he vowed not to miss it, but shortly after he was admitted to the hospice. I received a phone call from him within minutes before he died and he simply said,” You will always be my bunny. I will love you forever and watch down upon you at all times. “ I told him how much I loved him and I could hear him crying.  I did not understand.  My father passed away on July 23, a month after my third birthday.  He was 35 years old.

At the time my father contracted AIDS, the virus had not yet been named and there were no tests for it. He didn’t use protection with his girlfriend at the time.  Her ex-husband was an IV drug user and carrying the virus with no knowledge of it.  My father never met the person who contracted the virus and exposed his partner to the virus who then exposed him to it.  Today, many people contract the virus from someone who may never have been an I.V. drug user or considered someone who was  “high risk” like my father.

Entering pre-school, I did not know what to expect.  I did not understand death and constantly asked my mom why daddy did not call or write me, but I did know the reason he was not with me was because of AIDS.  I did not understand that at the time it was socially unacceptable.  People were not educated about the realities of AIDS and they associated the virus with bad behavior.  When I told kids in my pre-school my father died of AIDS they told their parents.  Most kids stopped speaking to me because they thought I could be infected.  Even though it was proven through a blood test that I did not have AIDS, I was treated like a leper.  Parents told their kids they could get AIDS from the saliva of another child.  Obviously, this is not true. The AIDS virus, once outside the body, dies almost instantly and a child’s saliva or an open cut has never been proven to infect someone.  I quickly learned not to share details of my father’s death and went through much of school being quiet, especially when someone told an AIDS joke.  Today, people still find the disease socially unacceptable.  Most people ask me if my father contracted the virus from a blood transfusion--like a transfusion would be the only acceptable way of contracting the disease. It should not matter how someone contracted the disease, everyone suffers the same agony and the same outcome. Many people do not comfort me when I share this information but rather they say nothing.  My father is immediately judged because AIDS is associated with bad lifestyle choices and most people loose sympathy because they feel AIDS patients bring the disease upon themselves.

This is not a comprehensive list of people’s misunderstandings or a complete story of my family or myself, but it is a sadly common story.  After being judged for so many years about something I can never change nor wish to, I have realized that I cannot change everyone’s mind, although I wish I could.  I have learned that people we heavily persecute in society may be the bravest people I know.  The gay community did not fear touching or caring for AIDS patients nor did they care about public opinion.  And yet today, we are so fast to pass judgment on what they can and cannot do. I have seen the devastation that AIDS has caused for my grandparents who should not have to outlive their child. I have seen my mom and myself celebrate his birthdays and his anniversary of death with solemn faces, praying he was here.  I have seen how people disrespect my father by making assumptions about who he was based on his AIDS diagnosis when he doesn’t deserve it.  But most of all, I know my father is proud of me and has watched me grow up from a good place where he no longer has to struggle or suffer or be in pain.

My father only had five sexual partners in his life including my mom and all of his partners were women.  He was never an I.V. drug user.  He did not feel at risk and at that time the health system did not label him as “high risk,” but my father’s diagnosis and death proves that everyone is at risk. He is still and always will be my father and no matter what people tell me or what took him from the world I am so proud to call him my Dad 

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HIV+ Dad

I found out my dad had Hiv when I was in 8th grade.  I'm now 30 and my dad is still living with virus.  I guess as a child you are so young, you really don't understand what it's all about.  And at that time, it still seemed as a death sentence.  Years later I would find out that my dad was gay.  Thats a lot on a child and when the family really doesn't talk about the issues it makes things worse.  We didn't talk about the virus for years. 

It wasn't until my parents divorced that my dad opened up to me here and there concerning his status and meds.  I'm sure it was a relief to him to be able to feel comfortable about it, though his sexuality to this day is still tip toed around even though we all know the truth of the matter.  Now there is no problem talking about the illness.  My dad suffered from a pneumonia this summer that was related to his deficiency which left him vulnerable if his levels were down.  Well they weren't until he got knocked with the pnuemonia.  He was on a venitlator for almost 2 weeks and all together in the hospital for almost a month.  He is one of the lucky ones considering the situation he was in.  It could have easily went the other way.  I'll say this, knowing my dad has had HIV since I was young it was hard not to think about death alot.  You think your prepared for a situation like that but that doesn't make it easier, in fact I think mentally it is harder.  I'm afraid now that some day I will have to relive that part of it. 

I know HIV is a scary thought, but now days it is considered a chronic illness.  And if people take care of themselves and they can have long and productive lifes.  Its not the end of the world.  Life will go on and it will.  Things will get better and someday there could be a cure.  One reason my dad was so lucky with his bout of pneumonia was because he isn't a drinker or smoker.  His other organs held up well while he was on the venilator.  A lot of times when someone who smokes has the same situation, Like Bernie Mac, who coincidentally died while my dad was in the same position, but different circumstances.  My advice to someone younger who might be finding out that a parent has HIV is to reach out to adults in the family, siblings, counselors at a church.  Don't let it consume you and take it on all by yourself.  Especially if it is not talked about within the home.  There is alot of emotions that come with that, fear, confusion, anger, depression, sadness, shame.  Don't take that on all by yourself.

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Poem for a brother

Daniel…
You are my big brother.
I followed you everywhere.
I was your shadow.

You answered my endless questions with endless patience and understanding.  
You knew that I had much to learn.  
You knew that I thought you had endless knowledge.

When I was little, you carried me up on your shoulders so that I could see the world.
Once, I threw a candy wrapper out of the window of your car.  
You stopped, backed up and made me pick it up.
It only took once.

You showed me the beauty of the world around me.  You taught me to respect it.
You knew the name of every wildflower, every tree.
You taught me (as a joke) that I did not like mineral water.

As I grew older and you moved to different locations around the country, I missed you.
I longed for our visits.
Because of you I got to visit some of the neatest places of our country.

When I struggled as a teen, you took me for a ride.
I ended up curled up by your side as if I were little again.
You shared the weight that was on my shoulders.

Things that I remember the most…
Going to the Baltimore Zoo with you.
Visiting your college campus with you.
You working in Mom’s flower beds.
Sitting in the audience of your presentations, whispering to others, “That’s my big brother.”
Walking through the woods during the fall, kicking up leaves of red, brown, and golden yellow.

I remember you being married and trying to live a life that others considered “normal.”
I remember hearing that you were gay.
I remember thinking, “SO?”  You were still the same.
I remember how you played with our nieces and nephews and how much they loved you… they still do, even the ones who never got to meet you in person.
I remember you taking me to Washington, D.C. to see CATS.  
I remember the marathons that you participated in, how fit and strong you were.
I remember dancing with you at our cousin’s wedding.   Daddy said that I had grown up.
I remember that when our family farm went into bankruptcy, you and Bobby pulled your resources to buy a house for Mom, Dad, Granny and me to live in.
I remember hearing for the first time about AIDS.  I was scared.
I remember my world shattering when I walked into the house carrying zucchini with a smile on my face, and then they said you had AIDS.  I smashed the zucchini against the wall.
I remember being so filled with emotion and anger.
I remember the many trips to the hospital.
I remember you continuing to work until the near end.
I remember friends and family being supportive.
I remember friends and family pulling away.
I remember you ushering Mom into the church for my wedding and back out.  You appeared so tired and frail.
I remember the last hospital visit.  Mom and Dad decided to bring you home.
I remember helping to take care of you.
I remember the bleach.
I remember those damn latex gloves.
I remember the doctors and nurses saying to wear them when I touched you.
I remembered the hands that held mine so tightly when I was little… that rubbed my back to calm me when I cried.
I took off those gloves.
I rubbed your sore, withering back with my warm, loving hands.
I remember seeing a glimpse of that old dignity in those tired hollowed-out eyes.
I remember trying to fulfill a previous promise to take you for a ride in the mountains to see the fall foliage.  
I remember you being too tired to go.
You were a 36-year-old-man, and you looked ninety.
I remember your body drawing up into a fetal position.
I remember those awful sores and your cries of pain.
I remember looking into your eyes and not seeing Dan anymore.
Your spirit had already slipped away, leaving a shell for a body… just barely hanging on.

I remember it snowed that day in November.  I remember being happy because the next day would be my birthday, and I love snow.
I remember my husband coming to get me.  “He is gone.” He said.
I remember when we arrived at Mom’s seeing a rose holding its bloom, despite the weight of the snow.  It had dignity.

I remember people who had disappeared for months all of a sudden reappearing.  I remember wanting to hate them, but with the love that God put in my heart, I couldn’t.  Along with the love, He gave me understanding, and I understood that they had one thing in common… fear.
I realized that the fear came from not knowing, not being educated, and I felt, and still do, that it is up to me to help people understand… to educate them.

My dearest, big brother… I have emerged from your shadow, and I live by many of the rules and lessons that you taught me.  The greatest thing that you taught me is to have a passion in my life and share it with others… and I do.
Once you wrote to me and said, “I am proud of you!”  
I have always been proud of you, Dan.  How much I love and miss you…
Your little sister,
Karen

In memory of Daniel Moses Muller
August 13, 1951- November 11, 1987

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Jude

June 6th the most devastating news a mother could hear was “I am HIV Positive”. It is now a week later and the socked in the gut feeling has subsided but the tears have now let lose. I broke down today in the Borders bookstore after finding out that none of the bookstores carry any books on HIV and living with this disease. I got socked in the gut again realizing that the stigma is alive and well in the tidy suburbia where neighbors will close their doors and minds to a mother’s grief.

I have hesitation to tell my own Mother. Wondering if she will abandon my son and close off to him. He does not want them to know yet and I won’t tell them. Still, it feels that again I have a set of parents that just don’t get it. That you love your children regardless of their sexual preference as well as their HIV status. I never really thought of my son being Bi. I just thought it was another level to his personality that although I did not understand it totally, I understood it more than he gave me credit for.

I am so scared for him. My God I want to wrap him in cotton and take him home with me. I just have to wait. Wait for virus level results, T-Cell results, results for everything and the waiting is killing me…..

What we as parents go through is a myriad of anger, confusion and grief. I found that there were only two support groups for parents in the Chicagoland area and I was frustrated and saddened by this.

One train of thought is that parents would not participate in support groups because the HIV+ status has been deemed a chronic illness. But with chronic illnesses there are many times when it can get to you. When hearing your child go through a myriad of complications while he/she is on the meds, worry when the T-cells start to do their fluctuation dances and general panic when flu or worse strikes. It is a helpless feeling; one that I know many parents can be overwhelmed by. So I do feel there is a need for a support group for parents of HIV+ children and so it starts. I am learning to breathe……

I hope that you participate in sharing your stories. We can be there to support each other.

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Anon, Honduras

Hi,

I'm am from HONDURAS, a small tropical country in the Navel of the America Continent, and a 35 Years old Bisexual Man.

This is not really my story, but my partner's (RIP), he died on October 2 of 2007, he was HIV Positive, and he infected me.

By the time I found out I was HIV+ (June 18 Of 2007) none of us was aware of our situation, also, we broke up on October of 2006 and since then I never tried to see him again, even when I loved him with all my heart.

One week later of June 18, I went to his house, looking for him, to tell him what was going on with his health, but I could not see him, and decided to tell about the situation to a relative of him, decided not to come back, I had my own problems to deal with.

On October 4 of 2007 I received a call, informing me of his death, I was shocked, but I had not seen him for a whole year, so I tohught it was only natural that he died of AIDS.

I went to his house, to know what happend, and little by little I discovered the inhuman circumstances in which he die.

First, in my pain and tears I requested to see recent pictures of Him, and found a couple of beautiful pictires of him, taken on May of 2007, where he was smiling, playing with his kids, playing with a dog, and in fact, he looked so healty and alive so, it made me suspicious that something went wrong in his family since I told them of him being HIV positive.

I secretly met with an employee of his family's house and found out they fed him in the same plate ever, and like that, he had his own cup, glass, fork, knife, spoon, you get the idea, he was isolated by his own family.

His razors where always trashed, and his tooth brush too, also, no one was ever taking care of his pills, he was so bad treated in his house that one day in september, he had a very strong discussion with his wife, the fight was so strong that he left the house about 5:00 P.M. and returned until 3:00 A.M.

He slept on a sofa, covered with a nylon, because he was unable to retain his wastes, that nylon hurted his kidneys (I hope I wrote it well, I used an online translator for "Riñones") wich were very sensitive.

He had lost all of his will to live, and at some point he lost his mind, he was not able to recognize any member of his family, or friends, only his 3 little kids, wich he hugged and kissed everytime he could, but his family tried to keep the kids away from him, fearing they can be infected by him.

He stopped taking his antiretrovirals, but with nobody taking care of this situation nobody noticed, his family found out when they moved the sofa on wich he slept, they found all his antiretrovirals behind the sofa

One week before he died, in the middle of a discussion because of he having AIDS he was thrown out of his house by his older sister, It was like 10:00 P.M. how he could, he crawled 3 blocks, until he reached the house of a former friend of him, I was in tears when his friend told me about this, and worse, his friend told me that was not the first time it happend to him, at the first week of september, he slept on the streets, like a homeless for about 3 nights.

He was taken from the care of his friend by his wife, and was thrown like a diying animal in a place very similar to a refuge, where he died alone, with an infinite sadness gesture in his face, his eyes wide open to the sky, and between his hads there was a picture of his 3 kids.

In the 7 years we where involved in a relationship, he was always afraid of being left alone at a hospital, or diying alone wich finally happend, and wich really hurts me so much in the inside.

A couple of days after his death, I went to the graveyard, to visit him, to tell him how much I loved him, and that I will love him forever. But once more I found how his family never cared of him, his grave was not fully covered with earth, I had to come back with a shovel to fully close the hole on the gorund.

It is so sad this is still happening, he was not given propper advice, and his family always refused to call me, even when he was calling my name and my mother's a lot of times.

I cried for him for several weeks, until I realized my tears won't bring him back to me, I still have a life to live, and that I'm willing to live.

I hope the people one day undestand that we are not social contagious, we can be hug, kissed and handshaked wothout any risk.

Thanks for letting me write this, maybe tis can help create a campaign of conciousnes and make people sensitive.

Thanks

To read his own story go to AVERT's men living with HIV section

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My fiancé

Hi I am a 21 year old female from the New Haven, CT and it's not me who has HIV, I've been dating a guy for three years now, and he is HIV positive. Today we are engaged and I am still happy with him. In the begining of our relationship, I didn't notice anything different about him, he just looked plain normal to me. I always knew that you couldn't tell a person has HIV just by looking at them, but still, I just though nothing of it. it nver crossed my mind. We've always used condoms and after a while, I started to get suspicious. I had no idea why we was using condoms for if we new each other well, and wans't dealing with anyone else. Comes to find out, I didn't know him too well. I always asked him why and I always asked about having a baby, and he always avioded the question, still I didn't know why.

A year passed and he started acting real funny towards me. he was trying to get me to break up with him for stupid things. I guess he didn't really know how to tell me what was really going on with him. I wasn't letting go that easy. After a while, I guess he got tired of hiding it from me, so one day we took a ride to place where we always went to get away, and he told me the reason why he didn't want to have kids was because he was HIV positive. I cried so hard in the car. I didn't even want him to touch me. I was so scared. All I can think about was "Wow, after being with this man for a year, he tells me something like this?" I didn't know what to say to him. I just cried cause then I started thinking that I had it. After I done cried alot, I just looked him in the eye and said "Baby, I'm gonna be right here for you, I'm not leaving you."

I was so scared to get tested, it took me a whole year to do. luckily it came back negative and three years later......we're still together. I love him sooooooo much. Men, Women.... if you are or think you HIV positive, don't be scared to get tested cause it's only right that you know so that you can protect yourself and whoever around you. Don't be afraid to tell your partner, cause whether they want to be with you or not, you're gonna stand strong and still be all that you can be. You are no different from other people and you deserve to be treated with the same love and respect as everyone else.

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Lindsay

My name is Lindsay and I'm 19 years old from western New York. I came from a loving family- mother, father, 2 sisters and a dog.My father was a hardworking, heavy set man that smoked cigars and listened to country music and loved his kids. In 1994, my father suddenly fell ill. While at work one day he lost his balance on a ladder and fell. Being, the stubborn, "manly-man" that he prided himself upon, he hesitated to go to the doctor right away. Over the next couple days, he became sicker. It seemed like he had the flu. My mother, getting on his case, scheduled an appointment for him to go to the doctor. Initially, the doctor said he had the pneumonia, drink fluids and rest. Although his flu-like symptoms did go away over the next week or so, he didn't feel any better and began losing a drastic amount of weight. His doctor then ran every blood test known to man. When the results came back, that perfect family shattered. My father was HIV positive. My mother shunned him and began working nights. I suppose that was her way of coping. My father hit one of the lowest points of his life, even becoming suicidal. Ultimately, their 14 year marriage ended in divorce and a bitter custody battle.

He left Easter Sunday. Having 3 young children, at that point we didn't fully understand the situation at hand. My father got his own place, my older sister lived with him and my younger sister and I stayed with my mother, visiting him on weekends and whenever we had time off from school. He started medication, to build his immune system and finally began to smile again. Living with HIV/AIDS is possible. My father proved that. Although he was no longer able to work due to medication and other things. He still did the things he enjoyed. He restored a 1972 tow truck,  started up a little business towing cars. He spent time with his kids, fishing, camping, shopping (until then, he hated shopping), attended school events, spent time at his friends garage helping them repair cars, drank plenty of Mountain Dew and still smoked cigars. He was very aware of his mortality but vowed to live life every day like it was his last and make the most of it. And he did just that. He attended meetings/support groups where he was able to talk about life and what it throws at you with people that really understood first hand how he felt. My father, who initially was ashamed of having AIDS, became accepting. He never hid the fact that he did have AIDS. He was always more than willing to discuss it. And to his surprise, most didn't turn their backs. They wanted to know. Generally, people thirst for knowledge. It can save your life.

Even though his spirit couldn't be broken, his health was still an issue. My father  got bronchitis. His doctor immediately put him on antibiotics and his symptoms were minimal until he started developing a horrible rash. It was a Friday night, my sisters and I were at his house watching movies, eating popcorn, having fun. He noticed that he was breaking out with a rash. So we start talking about what hes been using; laundry detergent, bar soap, moisturizers etc. Nothing was out of the norm. Sunday morning, he woke up to go to the bathroom in terrible pain. (which was not unusual. He suffered for rheumatoid arthritis also and by morning his pain medication had wore off) He got up, took a couple steps and then looked behind him. As gruesome as this sounds. The bottoms of his feet had basically sloughed off of his body and onto the carpet. Not knowing what else to do, we called 911 while he wrapped his raw feet up. He was brought to the emergency department and treated as a burn patient. Over the next couple days, all his skin had basically fallen off of his body. He didn't look human anymore. Doctors diagnosed him with a severe case of Stevens-Johnson Syndrome, better known as TENS. Ifs a severe allergic reaction, in his case to the antibiotic that he was on.  Doctors decided to put him in an induced coma because the pain was intolerable and it would reduce movement until his skin regenerated and healed. My father was a fighter. Over the next month, his skin healed. He regained consciousness. He was then moved to rehabilitation facility. A miracle, some may say. He recovered. Learned how to walk again, talk again- basically learned entirely how to function again in hopes of living a normal life.

Again he was back at it, working on cars, smoking his cigars and back being the best father his body could permit him to be. The only complaint I ever heard from him was "My skins to damn soft. This is not a man's skin." By 2001, Stevens-Johnsons Syndrome was a  meir memory, just  another obstacle he had overcome. Life became normal again. My father continued taking medications, even volunteering to be a guinea pig and trying new medications not knowing what the effects could be.

I talked to my father on a Friday night. He was telling me about some car he was working on. I don't know much about cars to this day, so I just pretended like I could relate. Saturday at about noon, I got a call from my sister saying that he was back in the hospital and to rush there because it wasn't looking good. Of course I got there going 90mph the whole way. By the time I got there, my father had fallen into a coma. What felt like minutes later, my family and I had a meeting with the doctor. He had pronounced my father brain dead. That was devastating. He gave us the option of taking him off life support or keeping him on it with virtually no chance of recovery. We chose to take him off life support and let him go to God.  Most of my family decided to stay and be with him for his last moments. I chose to leave. I refused to see my father at his weakest. He was a strong man- a fighter. And the last moments of my father that I recall are ones of him going against the grain and living his life the way he wanted to live it. On March 30th, 2003 my father passed away.

Although he is not here with me anymore. I carry him around with me. After all, I am my father's child. But I think the biggest thing Ive learned from my life and my father is to never give up hope- and to keep an open mind. Love others regardless and although they may not do the same, you will feel better about yourself. And lastly, be proud of yourself. There is not a type of person that can or cannot get AIDS. Anyone can. And having AIDS is not the end either. It may change the way you live your life, but it will not change who you are.

In loving memory of David A. Kuhn, a loving father.

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Jessica

I read your stories online, and as it seems to happen with any mention of AIDS around me, my ears perked up, the TV turned off, the music quieted. I listened (read) intently to the stories of those around me who have been impacted by this disease. I wish I could say that I was not one of them, but this disease has changed my life.

From my very first memories of my mother, she was a homebody.  Her yellow fleece robe and warmth from the fireplace were her favorite two things, besides the Cubs of course.  I remember singing 'Jose can you see' (my version) every baseball game with her...both of us standing with our hands over our hearts. I remember sitting in curlers every friday while she watched 'the bold and the beautiful' and did my hair.  I also remember the always present white boxes with the house logo with an "h" in the middle.  Later I would come to see those boxes in a different light.  Later I would see that all the energy she needed to play with me came from the medication in those white boxes.

By the time I was five, my mother was seriously ill.  I know the taste of hospital food and the feel of hospital pillows very well.  She was in and out for years, and I remember giving reports on her health during show-and-tell in kindergarten instead of bragging about my new toys. At the end of my kindergarten year my father sat my brother and I down on the couch and told us that mommy was gone and she wouldn't be coming back. It is the thing I remember most clearly about my childhood. I cry whenever I think of it.

I asked no questions and went on living my life without really knowing what it was that took my mother from me. As I got older and the question was asked of me, I relayed it to my father...wondering what the complete answer was. He would hint at her having an immune defficieny and vaguely tip toe around the subject.  But he was always very much against me giving blood during the blood drives at school. I was always very positive about it, still am.  I saw it as saving lives...while his memory was of taking them.

About a month after my 18th birthday, my father sat my brother and I down on the couch again for another talk.  The second one in 12 years.  I knew already this was serious.  He said we were now old enough to know the real reason my mother died.  I already knew that my mother had had troubles with having a second child.  Actually I am not her biological child because of that.  After having two ectopic pregnancies and miscarriages, trying in vitro fertilization, and losing most hope....my adopted mother and father became my parents.  What I didn't know about this situation was that during a surgery to remove the second fallopian tube from my mother's body, she lost a great amount of blood and needed a transfusion.  She was given infected blood and contracted HIV.  It wasn't long before she was in terrible health, and only a few short years before she was gone.

Yes, we could have sued the hospitals, but it wouldn't have brought her back.  And yes, I do feel somewhat cheated, not knowing this whole time how my own mother died, but I understand why my father did what he did. The 80's were not an understanding decade and he wanted to protect me. But now all I can think about is awareness and how AIDS has developed a 'point the finger' reputation of shame.  I want everyone to know that there is more to AIDS and HIV than just unprotected sex, and that awareness is key.

I hope that I will always remember my mother's face, and those Cubs games.  I know that she will always live on in my heart.

Jessica, Indiana, USA.

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Don't give up hope

Russ

My partner and best friend of the last 10 years died May 19, 2006 at the age of 47. He was about 27 years old when he was diagnosed with HIV.  I have to make this announcement because I want people to know how courageous he was, how he lived for almost half his life with the stigma of HIV, with copious medications and all their complications and side-effects, sometimes with the unkind judgment of small minds, with the ever present prospect of illness and death.

He was courageous because he refused to be defined or defeated by a diagnosis. He was courageous because he insisted on life. He was vital, honest, passionate, loving, funny, angry, opinionated, impulsive, articulate, compassionate, charming and damned good looking. It's how he lived his life. He was a wonderfully strong person, whom I was glad and proud to have in my life.

So, please, live your life, don't quit, if not for yourself, for those who love you. My partner and friend left me with a lifetime gift and treasure........his spirit which I felt leave his body as he died peacefully by my side.

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April

Hello, My name is April, I am a Sister to a  wonderful man that I have recently lost from HIV/AIDS. I am still struggling  with the fact that something so cruel took his life. I miss and think about him  every day. My family and I watched him live his life to the fullest and love the  hardest a person possible could. He faced it head on and told it he was going on  his terms not it's terms. He had so much courage and he was so brave.

I  remember my sister  telling me he sent her a card  with the meaning of  courage on it. She had said that fighting in IRAQ was not courage but staring  death in the face and saying my terms, that is courage  that is what  courage is all about.

When he started going in and out of the hospital we knew it  would not be long before it clamed his life. He was with us for thanksgiving and  Christmas of 05' and passed in February of 06'. He was only 40. At least we  had those last holidays together.

It's  hard to see someone you love dearly  slowly die and you can do nothing but pray that he goes quickly and not suffer.  He looked so fragile in his bed and so helpless all I could do was tell him how  much I loved him and that his 2 year old nephew would know him because he lives  in all our hearts and he would never be forgotten. He had called me on the phone  a week before he passed and told me my son would never know him  he started  crying and I told him not to say that because he was going to out live me. I  know I have an angel watching over me and that's what keeps me going and I know  he is in good company.

TO ALL WHO READ THIS, BE SAFE  TO MY ANGEL, I LOVE YOU JORDAN!!!!!

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Shana

Hi! All My name is Shana I'm 21 and I'm a proud mother of a 2yr old son Shane. I recently Just lost my distant father from HIV. I'm still dealing with it and the fact that he may have infected someone else and not told them. I almost feel gulity because I feel as if I should seek out everyone I think he was with and tell them to go and get themselves checked out. Though I'm not the one carrying HIV I carry the burden of it and the humilty of my church going, straight and narrow 42yr old father coming up dead after everyone only knowing that he was sick maybe less than a month. I feel like he was a phony and should have been true to himself. In reading this page I give a lot of you credit for admitting to the way of style you like to live along with your preference for your sexual partner. In conjunction my stomach gets sick at those who openly admit to having sex with people and not letting them know you were positive how unresponsible. I may not have the disease but I'm not even one step away from it and seeing how it destroys people. I found out my dad was infected October 17,2005. By October 27th he was in the hospital cause he couldn't even walk by himself and fell face first in our garage in which two days prior to I caught him out there with one shoe on and one shoe off couldn't even pull his sock up onto his leg, told him not to be out there. On November 3rd he was taken to a nursing him where he couldn't walk, talk , nor even watch you walk from one side of the room to the other. November 10th I arrived at the for a midnight visit stayed for about 45 to 50 minutes not like he slept with his eyes closed he was ready for heaven. I continuely told him I was going to be OK I think now boy was I lieing. I left the nursing home and get home around 2:50 A.M. I received a call I was then told that my dad passed away I was thinking I just left him. Death is no joke and HIV will result from it. True some people tell me well gotta die of something at sometime but it's just so hard not to factor it in that "damn maybe if he woulda a been just a little more careful". After he died I was some of what surpriseingly OK cause I knew it was coming, but reality bit me in the ass once more. Though the nurses hasn't said anything and no one else really said too much about it I received a copy of his death certificate and damn right before lay those three letters that have changed my life forever
Death Certificate:
Cause of death- H I V
 
nothing is sugar coated on there. Everyone be safe and be honest life is precious and is not promised the least we could do is be grateful people and protect our temples as such beautiful creatures that god made us out to be.
 
R.I.P.----- J.L.T.      4/63-11-05

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My partner

Hi my friends call me T-T I’m a happy successful mother.

HIV-AIDS is such a surreal experience, until you have actually gone through the testing and getting the results you will never know.

I’ve always been careful with my health always, I tested regularly and had protected sex. I met a man I knew was my soul mate weconnected, had fun even consulted him for each every life decision he was the one [he had one flaw I thought I could fix, womanizing and drinking like there is no tomorrow] My family though didn’t like him much it was as if they could see right through him.

I’m always running to the doctor when something is wrong with my body, my body really talks to me, after unprotected sex with this man I would get night sweats, thrush, vomiting and a loose stomach and not once did I reconcile this with HIV it could have been too much heat or because I was traveling a lot it was probably change of weather and places [I thought to myself]. Then as part of my routine check ups I asked him to accompany me to my doctor [I knew he was scared of testing so I would test then he would test after me] deep down I knew something was not right but I loved him.

My Elisa came out Negative and I smiled and the doctor proceeded to him and as the thin line appeared on HIV-1, I could feel my spirit leave my body the whole room just started to fade and my stomach turned, how can this happen to us I mean me [this was not my reality it was my neighbors my friends not mine].

I asked my doctor to then draw blood for both of us for further test. The next three days would be hell, he dropped me off at home

I couldn’t tell anyone [they would say they told me so] He didn’t seem moved by the whole thing which worried my doctor painfully.

We went back after 3 days his was confirmed positive and mine negative [it was a short-lived victory as I knew I had to go back after 3months and 6months] I swore I was going help him through this even better it would force him to focus on us [I was wrong] he wanted to have me around to look out for him but he was self destructing and I could see he was taking me with it was painful.

11 weeks went by and I asked him to come along he refused saying that he had urgent matters and things were happening in his life that he had to deal with and I was bothering him [I was alone, scared and went for the test] it came out negative again my doctor assured me I was okay and that I should come back after 6months but I’m okay. I will probably go back for the 6months test, as I want to give my daughter a full life with a mother who is healthy.

Parallel to this my dear cousin confessed to me while I was relating my story to her that she is also positive it shattered me, now we are in a process of making sure she gets treatment. Until HIV comes knocking at your door you never think its your problem what this taught me was it can happen to anyone now I live in fear that after 6months I might seroconvert but I’m praying hard that it doesn’t happen.

We need to be strong for those infected and for ourselves because life is just too short and HIV is making it shorter.

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