Angel

    I’ am not positive, but when I was 10yrs I saw my mother crying and I had no idea why...My dad was comforting her and telling her that nothing will change and that some things in life seems like the worst but truly speaking it mad my parents closer.
  My mother is positive and when I first found out that she had the HIV I thought she would become very sick and die.....But I'm proud to say she is living a healthy life and stays strong....There is no reason why you should be ashamed. Things happen for a reason.....Any time something goes wrong we pray and my saying is, ‘you gotta go though hell to get to heaven'. I support you all and you should keep your head up and just forget about it just always believe that god has your back. There is a reason for everything and HIV is not a curse...

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Danny

I recently discovered my beloved Uncle and his wife + son has HIV/AIDS.  It was my uncle that infected his wife while she was pregnant with their son. He is only 2 years old.

I know about the virus but know its a little close to home and it hurts like hell when people you love make the wrong decisions and end up living with HIV even worse when it was not your choice.

Latley all they do is fight and argue, regret I guess, and struggle to get to terms with what is happening to them.  They don’t even know that we know about their status.

It breaks my heart coz all we want to do support them. So many thoughts lingers in my head all day long. I hope they know its not a death sentence just a another way of living.  

This is his second marriage and he has a son who just turned 21 and a daughter age 27 and they don’t know about their father being HIV positive.  Doctors have told his he hasn’t got much longer but I believe God has the last say.

My thinking is the reason he has not told his kids yet could be that his wife does not want his ex knowing.  

Its hard knowing and not being able to say its ok, we are still here and you can lean on us for as long as you want and need. It’s hard to be silent but I have to respect them, they have the right to tell whom they wish.

I feel almost tempted to tell my cousins or to come out and say, "hey I know you the Virus, but we still love you the same way". I feel strongly that, not us, but his kids who loves him so much has the rite to know.

I know I sound crazy but I don’t know how to feel about this in all.

AVERT.org If you are experiencing some issues raised in this story, please take a look at our Emotional needs and Support page. 

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Joanne

Hi my names joanne. Im 21

Ive been with my partner for nearly a year now & I knew he was HIV positive when I first got with him. We had a real tough first few month as his ex g.f who is negative broke up with him and told a lot of people and a lot of people were horrible and pure evil about the situation. Thankfully she lives a good far distance away from us which it great lol. She doesn’t have a clue what it is but thinks she does. Shes a few years older then me and I hope one day she asks herself why she ever let him go? Because hes the most decent male I have ever met. Id never change him and not so long ago I was suffering from depression & kicked him out. I know now that I did wrong we are now back together.
We haven’t had sex yet only because I want to know a bit more about HIV. I’m going to start going to hospital appointments with him and be by his side. I love him so much and hes the person I want to spend the rest of my life with. The thing I always worry about is maybe in a few years we would love to have children. I’ve heard of the sperm wash but I don’t know much about it. I was wondering if anyone has had this or they know anyone that has and how it works, cost etc..

My mum & dad know about my boyfriends status and they are so supportive. He lived in a hostel before I met him but my mum and dad allowed him to move in with us so hes looked after better and gets loads of food hehe. Hes lived with us for about 4 month and I mean we have our up's & downs about things just like anyone else.

Ive judged him once on what he has and I still regret that from this day now. I used to be like those people that judge people before you know them and now I know that was wrong for me to do. He does a lot for me and I do a lot for him to. Were both happy and I want to be there for him every step of the way. I love him dearly. Hes my best friend not just my boyfriend and without him i wouldn’t be the happy lady I am today.

And remember guys never judge a book by its cover.

 AVERT.org. For more information about supporting the emotion needs of people living with HIV, then take a look at our Living with HIV: Emotion needs and support page.

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Gujen

I have always had an aversion to terminal illnesses be it AIDS or cancer but I tried to look beyond that, little did I know that AIDS would take my Dad. We live in London and belong to a ultra conservative South East Asian community where things like HIV do not happen to anyone other than "bad people".

My Dad ever since I remember him was a strict disciplined but kind man who did a lot for children in orphanges in India and was also involved in establishing tamil culture and temples in the UK.His one weakness was sometimes putting others ahead of his family responsibilities which eventually ended up severely damaging our relationship.

I still to this day have no idea how he contracted HIV, the fact is he did probably about ten years ago. His life from childhood had been a turbulent one and he with my Mum had done the best they could to raise us of that I have no doubt; he'd lost his father at a young age and that made him see the world differently, his Uncle being his surrogate father.

My Dad came to London by ship in the late 60's with my Mum following soon after and worked hard to build a good life, he had a great circle of friends but about five years ago aged 75 began his first stay at hospital where his infection went undiagnosed - after release he went back to see the consultant who told him to go away and stop wasting his time. I used to worry about him since I was a child and could see "something" was not quite right so began working in earnest to rebuild our relationship.By this time whenever he was ill I tried my best to get him the best medicine I could by talking to pharmacists and after his second stay at hospital with pneumonia could see he was losing weight at an alarming rate but by now had additional complications such as bacterial yeast infections down his oesophagus that made it so painful for him to swallow that he started to not eat. I suspected his immune system was breaking down but assumed that it was his age (80),having read about acupuncture then started taking him twice a week which seemed to really help.

In December 2008 he was taken to hospital for the last time, I held his hand when the doctors used to take blood samples from him and did not batter an eyelid when the doctor said they were going to test for everything including HIV - I was so sure it was something else.

I stayed with him in hospital more for moral support than anything else as I knew he was scared and just by being around him he seemed more confident..in those three weeks at one point they changed his medication and he seemed to really improve like the previous two times that I didn\'t worry but trying to stay awake and watch over him 24/7 and breathing in his coughs and sneezes really tested my own immune system - under stress I collapsed at home one morning where I went to take a break with a sky high temperature so bad that my house mates took me to hospital. I was away for 1.5 days when at 9.40pm the phone rang and as I went to answer it my full mug of tea went flying shattering on the floor like it had been smashed...I knew then instinctively something bad was happening and the hospital told me to come as quickly as I could.

I drove like a maniac as safely as I could in the circumstances but when I got there the look on the nurses face said it all, I said to her "it's bad isn't it", to which she said "I'm sorry...." the rest of her words did not register in me, the doctor a young guy came in looking distressed so i said to him I was sure he did the best he could to which he said yes but that my father had seemed to give up.

I found out he had AIDS on the first working day after Christmas from the Coroner's office who had found the virus in every organ of his body - a body i massaged since I was a young kid.
I don't know how but found the strength to get through that period but i treasure with ALL my heart all the fond memories of the good times including looking after him in hospital. In many ways God was merciful because I didn't know he had AIDS until after his death and he only knew for a week or so but for a proud man I know how much it would have hurt him if his friends knew he had died of this socially "unnacceptable illness". The crazy thing is I enjoyed looking after him and being with him in hospital for those final weeks is something i will treasure for the rest of my life..it has also made me look upon this illness with kinder eyes although I never stigmatised people or had a problem with anyone\'s sexual orientation.

I want in some way for people to know it's ok to have AIDS, it does not detract from whom that person is..I will love my Dad completely until the day I die and on the 1st of Jan 2010 will be flying to Kasi Temple next to the sacred Ganges to fulfill in some way with God's grace the journey he wanted to make but couldn't to deliver his third and final urn of ashes to the Holy River.
To all conservative communities I beseech you - get off your high horse, we do not have the right to judge other human lives without having first walked in their shoes ..no-one knows how my faher became HIV+ but that in no way stops him from being my father. He will always be my hero, born in poverty and self made he never stopped caring about other people and I will always carry his memory with love.

I hope in 2010 to start to do something to acknowledge my father's death in a way that will help educate and make far more tolerant the hippocritical society in which I sometimes find myself.

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Gigi

I'm not HIV+ and honestly i dont know why i'm writing this. my mom died of AIDS last year. i dont know how she got it . but i know, now that she had it for 2 years. my parents are divorced and she dint even date much....i hate it that she died of aids. no offence but where i live its still a stigma. she was this energy oozing person an din the end she just withered away. i read some of the articles here and now i know why she couldnt swallow the pills , i feel ashamed for not knowing better. hell in d end i dint have money to pay the hospital bills and doctor advised me to let her go and i did. i let her go. she could have been alive if i could arrange money somehow and just hang on.

I still dream about her ...sometimes she shouts at me for buying things , she hugge dme in one once and sometimes she just looks like herself before she fell ill.

Again , i dont know why i\'m writing this. but i do know that life does go on and we do feel happy even when we are completely torn up inside. when lie puts you in such tough situations you do have the strength inside to live through them. you just have to hang on, plus we cant really dont anything else ,can we?

I hope for hope and faith for all with this illness....hold on :)

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Tammie

I lost my mom on July 29, 1993 due to AIDS and I really miss her very much. She was the type of woman who to me gave up on life. She was on drugs for several years up to the day she died. I really don\'tknow the whole story to it but I have learned alot from her life and like her i am living with hiv but I refuse to give up on life.

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Anon

My name is unimportant at this time... I want to share with you the wonderful being I have stumbled upon, as if by chance.  We are soul mates to the bone, except for one little glitch... I call it little, because I see Him, for who He is inside, not the sickness he has to deal with.  I have fallen madly in love with this man, as if I have never loved before.  He was scared that I would turn Him down for what He has to deal with... His honesty made me love Him even more, and I told  Him that I would stand by His side.  

People with HIV/AIDS, are blessings among us... Whether they inspire us with their never ending fights, or whether it is the fact that they appreciate live because they see it through a different spectrum.  They live for today and love unconditionally.

I had never looked outside my little box of perfection, until I met this wonderful man.  I am proud of Him, and love him unconditionally.  I will be there through the good times and the bad times.  He opened my eyes to reality.  

I know that the time we have left, will be the most wonderful time of our lives.

There are us who will love you no matter what, you make our lives wonderful and We are proud to have you among us.  We may not know what it is like, but we will be there for you...
        

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Jane

i lost my brother october 22 2007 .he had full blown aids.i watchd him 4 years go from a strong happy go lucky guy 2 a very weak guy. losen eye sigh legs weak cant walk enjoy life in just a few months. i knew his life was comin 2 an end and i didnt no what 2 say or do. my brother was like my bestfriend. there were 3 boys and 4 girls n our family and hes the only one that made me feel like part of the family. its been 2 years and im hurtn so much n side. cry all the time. y did he have 2 die of aids? i use 2 hear about aids b4 i found out about my brother and didnt want 2 b around or talk 2 anyone with aids. but now i just want 2 say im sorry and i understand now.

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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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