December 1, 1999

In an effort to show support for AIDS AWARENESS DAY, my friends and I would like to share some thoughts, experiences and insights with you.   When initiating this project there was some trepidation regarding the possible lack of input.   Being bona fide Baby Boomers, we found that there is a wealth of experience to be shared within our ranks.

From the book, There is Hope: Learning to Live with HIV, published by the HIV Coalition

Epilogue By Joseph Zendell, HIVCO President Evanston, IL

It's tough writing an epilogue to this book.   I feel almost as if I'm writing an epilogue to my life, and that's pretty depressing.   What comes to mind now, as I sit here with 7 T cells and this damned virus in my body, is fear.   Oh, not fear of death. Death will either be a release, an eternal sleep, or a great adventure.

No. What I fear is dying . . . badly.   I fear the pain and the lingering, wasting away of what I once was.   I am desparately afraid of losing my dignity, becoming a burden and a helpless invalid.

I remember the months before my beloved Michael died.   How much he needed me as he became weaker and unable to lift his head.   How heart wrenching it was to care for him, knowing that the end was at hand.   And yet I was proud to be able to be with him those last months, and pleased that I could help him through the process of dying.   There was never any fear in his eyes, just strength and courage.

Each day now I struggle between trying to accept the inevitable, death, and the need to fight on - - to try new and encouraging alternative techniques.   To hope that somehow, I'll beat the odds.

What an incredibly illogical, human thing this is, this thing called hope.   It is often the only thing we have that keeps us from going absolutely nuts.   I hope for a cure, I hope for new and useful treatments.   I hope that I can outlast this disease and continue what has been a wonderful life.   That "there is hope" is perhaps the only way we can really deal with this dreaded and cruel plague.   It isn't rational.   It isn't, perhaps, terribly productive.   But the alternative is to give up, and that I will never do.

Michael never did.

Neither should you.

My Uncle Joseph left us on January 15, 1995. He is loved and missed.

Jade S. G.

Our generation found our recreation in drugs, sex and other avenues that are known as a few of the sources of the virus.   As we grew to become parents, valued members of the work force and generally less active most of us toned our lifestyles down and paired off.   The fact of life that was to become AIDS was not a factor in our younger days.   We made our choices without worry.   Any physical problems that arose from our habits were pretty much alleviated by a few antibiotics at worst.   Still, when the threat of AIDS became apparent our ranks began to thin.

My dearest friend, Brenda, was diagnosed HIV positive in 1985.   At that time I was not all that familiar with what HIV or AIDS really was, I only knew the eventual outcome.   Brenda chose to go public.   She was interviewed by television crews.   She was taped by a public television station over the course of her illness.   She protested the fact that at that time there were no support groups available for women.   Brenda spent every available minute working with CURE AIDS NOW, a very special organization in Dade County, Florida.   Along with countless others, she helped feed, clothe, pay for medication, get rides to doctors and hospitals, formed a Meals on Wheels for AIDS patients living on their own and tried to give others a better quality of life and the dignity to live with this disease.   Brenda joined in the fight to have those diagnosed as HIV positive be considered for government assistance for their medical needs.   This may not seem that unusual these days, but in the '80s the acronyms HIV and AIDS were whispered.   Families were shunned, jobs were lost and schools refused to educate children who suffered from this disease.   Religious zealots claimed that AIDS was simply a path to hell for those with deviant lifestyles.   It was a witch hunt and in some areas, that thinking prevails.

Brenda passed away several years ago, leaving behind those who loved her.   I always knew my friend was an unusually giving person but seeing the strength she drew upon during her final years was awe-inspiring.

During Brenda's first days of coming out about her diagnosis she was living in Florida and I in Georgia.   She called often and we tried to find things to say that were not AIDS related but the conversation always returned to her plight.   One morning, she called me while uncontrollably sobbing.   It wasn't the disease, it wasn't the fact that her life was going to end in a matter of years that caused her such pain.   It was simply the fact that no one had touched her in months.   The fact was that she had not had a hand to hold, a cheek to kiss or a hug was taking an enormous toll on my friend.   Her words still ring in my ears to this day.

Brenda is one of eleven people who were taken from my circle of friends as a direct result of AIDS.   Three women and eight men who had enriched my life and shared some of their joys and sorrows with me during our time together are forever gone.   I somehow got lucky in that the hell they personally lived with for some reason has passed me by.   I take some solace in the knowledge that I held my loved ones and maybe let them know that at least one person cared enough to comfort them without fear of contamination.

I beg those of you who happen upon this site to make an effort to educate yourself about the real threat of AIDS.   This disease is devastating to the body but the abandonment by friends, families and significant others is also a killer.   If you suddenly find yourself in a position to help a care giver or victim of this disease, I beg you to become as knowledgeable as possible.   Personally, I have heard normally intelligent people make such stupid statements in hospitals, at funerals or just in general.   In one case, the grieving mother of a young man who had passed away only hours earlier was informed by a well meaning relative that AIDS was God's way of ridding society of its sinners.   That same person offered up that God was just doing spring cleaning.   When confronted with the situation so many of our loved ones are having to deal with, please, dig deep within yourself for the compassion that dwells within all of us.

There are many sites on line that offer up to the minute information on treatments and research.   Not being versed in that area, we are only attempting to present our personal experiences.   Please, take a moment to think of those who really need our support.   Remember, too, if you are fortunate enough to remain untouched by the loss of someone to this fatal virus, you are a member of a rapidly shrinking minority.   I thank all those who are displaying the red ribbon in support of AIDS AWARENESS DAY.   There remains some hope that a few of the millions of Internet surfers who view the red ribbons displayed will find some room in their hearts to not worry about how people got infected with the virus.   Getting rid of the prejudices is step one to demonstrating our humanity.   Be safe, be kind, be human.

Millard ~ The Official JAP

Hello. I came across your site via a link from my dear friend Teddy's.

Reading your page brought tears to my eyes, not for me but for the millions of others living with HIV/AIDS.   The stories on your page NEED to be told.

I, too, am a woman living with full blown AIDS.   Not that it matters much, but I contracted this disease as a result of a brutal and racist rape on me on Sept. 2, 1990.   Eight months later I sat across from a doctor who told me I would die.   It felt as though a bomb had been dropped on my lap.   I bought my first red ribbon that day.   Have been wearing one ever since.   A year later I was diagnosed with AIDS.   It was at this time that I decided to make AIDS my friend.   I knew that there was NOTHING I could do about this situation.   AIDS was not going to go away, and so I began to treat it as a friend.   I write it letters each year on the anniversary of my diagnosis.   The first letter was nasty...said things like, "how dare you invade my body! GO AWAY!"   Now the letters are more along the line of, "Okay, so we made it to another year.   This and this and this hasn't worked.   What will we do now?"

Like your friend Brenda, I too, went public.   Have been on many TV documentaries, in the papers, the news, magazines, etc.   As a First Nations (Native American) Grandmother, I felt it was necessary to put a face to this dreaded disease.   I felt my story might help others realize that it just takes one time for one to become infected.   I am an AIDS Educator throughout Canada.   Fortunately, my children are now adults and I am free to travel.   They also understand my need to do this work.   I have three young grandchildren, aged 8-10.   All three are aware that their Grandma has AIDS and will die soon.

I have tried every combination of every cocktail available.   None have worked for me for long.   In May I went on a trial.   In October I was diagnosed with terminal cancer.   I feel now that my days are numbered.   And I am okay with this.

Each year I put my tree up and I decorate it with red ribbons I have made for each of my personal friends who have died of AIDS related illness.   The ribbons are red velvet with gold lettering.   This year as I put my tree up, I sobbed, knowing that in all likeliehood, I would not be doing this next year.   I reached out to my friends on the internet and they have agreed to take the ribbons.   This tradition will be continued globally.   This makes me feel wonderful!

My mother and my siblings have chosen to disown me.   They cannot accept the fact that I have AIDS.   It is their belief that their God has punished me for my lifestyle.   I am a lesbian.   It saddens me that they believe God would punish anyone for loving another human being.   I am a Traditionalist . . . meaning I practice and follow the Red Path.   I invite your readers to visit my site at http://www.oocities.org/Wellesley/6647/.   I have an AIDS Memorial on my site as well as a Children's Page which lists the stories of my friends with AIDS.

Miigwetch wendaam (heartfelt thank you) for the work you did on line.   This is so necessary!

hugz and howls
Waabnong Kwe
Tsalagi and Ojibway Nations
Wolf Clan

"In some of my dreams, I love with one hand and I fight with the other.   In some of my other dreams, I love with both hands, and the fighting is over."

As a Hospice nurse, I often become involved emotionally with my patients.   My goal is to help ease their physical and emotional pain, and support loved ones through the difficult struggle.   But, I wondered about my ability to do this, the day I was assigned to my first patient with HIV.   There was no particular fear of contracting the disease, after all I was well educated in that regard.   After being briefed on the patient’s situation, my main concern was if I could deal with the life-style adopted by this young gay couple.

Acutely aware of my fear, I knocked on the door and was admitted by Tim’s companion.   It quickly became apparent that both Ron and Tim were quiet and reticent about providing me with necessary information.   Sitting on the side of Tim’s bed, holding his hand I reassured him I was there to help in any way I could.   Soon, we all became more comfortable.   Little did I know that day, that I was to be so enriched by this experience.

With the perspective of time, I look back and remember with love, how much both these two people gave me.   We laughed, cried and grieved together.   We were all just people!   I learned first hand about how lonely it can be, if you chose an alternative life-style, how cruel and unfeeling people can be, and that your “lifestyle” does not determine your worth as a human being.

In the short time I cared for Tim, he and his partner taught me a valuable lesson ... caring and compassion are deserved by everyone.   Love is simply love, no matter who gives, or who receives.  Moral judgment is not mine to make, caring and giving is!   Thank you both, for what you gave me.

Sign me ... overwhelmed here!

My words:  We must ALL take responsibility for stopping the spread of HIV/AIDS.   You CAN help!   The key is to Educate yourselves and your children.   It is my belief that each and every person who learns the "facts" about the spread of HIV/AIDS will play a significant role in bringing a halt to this devastating disease.   I ask that you also have compassion for those who are LIVING with HIV/AIDS.   They are fighting the battle of all battles, and many are winning, partly because they have love and support in their lives.

Teddy

Hope I don't bum everybody out but, I remember the 1st World Aids Day in 1988.   I remember attending a ceremony acknowledging it with my support group of 14 others of which I am the only to be remaining alive.   With Dec 1st around the corner, I feel a need to share my recollection of seeing the quilt in Washington, D.C.   I have been moved by the countless stories of pain, fear, rage, healing, compassion and courage and want to honor the memory of friends, lovers, or family members.   In fact, it really might seem inadequate.   I call it "Reflections of the Quilt."

Looking out over the mall and as far as I can see, a rainbow of colors woven into fabric.   The Quilt hit me like a ton of bricks.   As it unfolds the panels become wider, longer, and never ending.   The flowers placed at the foot of some panels, break the bleak monotony, beautiful in the face of horror the quilt conveys.   Each panel spells out a name, then another, then another.   The Quilt becomes a time line, a chronicle of death and grief.   The trickle of names swells, widens, becomes a raging river of anguish and tragedy.   As the years pass by the names on the quilt keep flowing.   Behind each panel, a story, a soul, a spirit.   A family in anguish, and friends in shock.   Broken hearted parents, confused siblings, fearful lover's.   Multiplied by tens, hundreds, thousands, the colorful names on the quilt tell their mute story in eloquent and thunderous silence, broken only by those that weep nearby.

His soul is tormented by flashbacks,by nightmares.   The pain brings on fear and panic.   All too often, awakened covered in sweat,heart pounding, not ready to die.   The light is not in sight.   Just fear.   His eyes bleary from the terror, his heart feels like lead.   He walks slowly, burdened by guilt and anger, imprisoned by bitterness and rage.   His feet stop.   He found it.   There is the name.   He shakes,he trembles,he sighs.   He kneels down to keep from falling.   His eyes close, his face contorts, and a tear trickles down his cheek.   Then the sobs begin.   As the floodgates of grief open, he can feel his loved one's presence reach out from the colors of the as he lets the tears roll down his face and onto the quilt, he is overwhelmed by the feeling that he has been forgiven by the person whose life he could not save.   Years of grief, years of guilt and anger pour out, unrestrained, uncontrolled.   After some time, he feels lighter.   He feels a sense of closure.   The sadness is still present, but now it is clean sadness, without being embittered with the poisons of rage and shame.   Slowly he starts to stand.   He takes a deep breath, taking in a new life.   His arms still reaching towards the quilt, his fingers part company with the fabric.   He stands there, looking at the beautiful colored letters spelling the dead loved one's name, feeling the presence next to him.   He kneels down once more and leaves a few flowers on the ground, as if to say good-bye.

It is time to move on.   He must still face the world, he must still try to live, and it will still be hard.   But he now understands that he survived for a reason, even if he still doesn't know exactly why!

Slowly, he walks away, past the hundreds of panels, past the thousands of names, each with its own story, and he realizes he is part of the Quilt.   Because his loved ones spirit will keep him connected to it with sorrow and healing.   They will not be forgotten, those who made the ultimate sacrifice for the rest of us.   Lives lost, broken bodies, wounded spirits, and all I can say is a humble, "THANK YOU!"
May the healing begin for those in pain.
May the healing go on for those who have sown the quilt.
May the bitterness be sweetened . . .
By gratefulness and respect.

Take Care, Ed

I've known a few people who were HIV positive but not really close friends and don't even know what came of them.

The only person I know who died of AIDS was my cousin.   You can embellish on this if you want to write about it.   (Mil's note:  Not a word has been touched.)

My mother was one of 3 girls.   The family was like a band of gypsies when the girls were growing up, travelling in a trailer and selling food at carnivals . . . ie: they were poor . . . in terms of social class, they had none.   Things did improve somewhat for them over the years.   The oldest daughter was Shirley.   She married a Texan named Harmon . . . later to become a mega millionaire in Dallas, owning one of the major dairies in Houston and Dallas, a chain of convenience stores, a vending machine company, and ties to the Jewish Mafia.   They had 4 children.   The 2 oldest were girls, and then the youngest were fraternal twins, Renay and Raymond.

This family reigned as the hypocrites of hypocrisy.   On their way up the social ladder, they would only associate with other Jews and lived in a predominantly Jewish wealthy neighborhood.   I know when I used to visit them, the kids were forbidden to associate with non-Jews and people of other races were strictly forbidden from their visiting their home.   (Renay and I would sneak out to the other neighborhoods to find a good time.)

Then the family became unbelievable wealthy, and they moved to the Beverly Hills of Dallas.   Then it was ok for their best friends to be the gentile Frito-Lay people who lived across the street from them.   Everything was for show.   Harmon was a cold 'do it my way or else-no nonsense kind of man.   He reeked of the underworld.   Always had a big fat expensive cigar in his ignorant mouth.   Well as luck would have it for Harmon, his only son, Raymond . . . who was expected to rule the family fortune . . . was gay.   He was chubby, smart and funny.   I loved him always . . . my favorite.   They kept it a secret that he was gay, they were completely ashamed and unaccepting.   Then they found out he had AIDS.   They completely disowned him . . . cut him off, didn't speak to him, not even on his dying day . . . did not even attend his funeral.   Renay was his only friend, other than his boyfriend.   I always loved Renay and Raymond . . . she was a real rebel herself.   As devastated as she was and is, she now is close again with her family.   This disgusts me to no end.   Talk about social stigma!   This family is the epitome of shameful ignorant America.

I wasn't there through the years of this tragedy as I had already been repulsed by the twisted values of this Great American Family.   I miss Raymond and am sorry I could not be there in his final hours. He was one of the few people in my family I still talk to.

I just have no tolerance for ignorance and superficiality.

And now that I'm completely depressed over this . . . think I'll watch TV to get in a different mood.   Sorry to hear about your friends, too.   I've had several die of drug overdose, suicide and accidents, but even living in Hollywood I have not had any close friends die from AIDS . . . hope I never do.

Ms. Zippy AKA Deb

Remember to always say what you mean.   If you love someone, tell them.   Don't be afraid to express yourself.   Reach out and tell someone what they mean to you.   Because when you decide that it is the right time, it might be too late.   Seize the day.   Never have regrets.   And most importantly, stay close to your friends and family, for they have helped make you the person that you are today.   Pass this along to your friends.   It could make a difference.   The difference between doing all that you can or having regrets which may stay with you forever.

Submitted by Pony

Submitted by Trygve in memory of D.B.J.