Surviving and Thriving with AIDS: Hints for the Newly Diagnosed Michael Callen, Editor

©1987 PWAC NOTE: THIS IS OLD NEWS, posted for historical research only. The medical information herein is extremely outdated!

TELLING FAMILY AND FRIENDS THAT YOU HAVE AIDS

INNERVIEW
by Michael Calvert

What do I say?
When do I tell them?
What about questions I don't know the answer to?
What if they disown me?
What if they never speak to me again?
What if they say "You deserve it"?
What if they say "Come home"?
What if they ask "Do you need anything"?
What if they ask "How long do you have to live"?
What if my father tries to hit me?
What if my mother goes into hysterics?
What do I do if they cry?
What if they hold me and support me?
What if they encourage me to help myself get better?
What if they demand that I call every day with a report?
What if they want me to swear not to tell anyone?
What if they blame each other or themselves?
What if they want me to pray to a god I don't know?
What if they love me anyway?

A MOTHER'S THOUGHTS
by Arlene

Hi! My name is Arlene...the mother of Michael Calvert, who is a contributor to the PWA Coalition Newsline and who is a PWA. Boy, that was a mouthful, was it not?

In July of 1985, Michael was diagnosed with KS and AIDS. A few days later, when Michael telephoned me to tell me (though he did tell me as gently and as humanely as possibly), my world fell apart. No need to go into the grim horror of the days which followed. All of you who love a PWA already replayed that scene in your own head before you finished reading this sentence. Though I was subsequently diagnosed (by friends and loved ones) as having a terminal case of negativity, those who knew me--and especially those who know Michael--had hope; more than hope...they KNEW that both Michael and I would (WILL) survive!

There is no real magic to our medicine, though he and I often refer to this bond as such. It is really a medicine we all can take and it is available without a prescription. The medicine:

Communication...communication...

communication...

Too simplistic, you say? No, it is not simple, for REALLY talking, REALLY communicating is a tedious, time-consuming, fear-fraught endeavor. But it is not too late to start. Do it now. If your own mother is not around, or your father, or a sister or a brother with whom you have already established a long, warm and loving bond...for your own sake, talk to SOMEBODY. That somebody you pick to talk to may not have the foggiest idea of what to say to you, but he, or she, will keep listening, and holding you (even over the long distance wires) because they CARE.

Fortunately, for Michael and for me, we have always been close--always communicated. Also, fortunately for both of us, we are surrounded by family and friends who love us, let us know it, and share with us their time, shoulders, cash and a kick in the pants when we screw up. (Somebody who really loves you will not hesitate to tell you that you are being a jerk, even if you are sick, or even if the one you love is sick). But I digress....

The point I am attempting to make here is that we, Michael and I, do know how very damned difficult it is to be open and honest and to reach out for a friend when your belly is rumbling, or because your horse's ass of a landlord is threatening to prove himself to be in the world class category.

But reach out to somebody, ANYHOW, now. Please.

True mutual caring can be the most marvelous tonic...not a cure all, understand, but a wonderful tonic that will bring some reason, some lovely, gentle, peaceful meaning to you both. Loving communication is truth and truth doesn't die.


A MOTHER'S ADVICE
by Suzanne Montanye

Most of you are men. Most of you are young. I am a woman; I am not so young. My daughter died June 23rd at age 24. She, like you, was a PWA. I was her care partner.

This disease should not be the responsibility of the gay community. This terrible illness is about people and it is about the families who live it. It is about fear, denial, anger, frustration and love. It is also about ignorance and education.

These are some of the things I learned and because I know how special and how fragile you are, let me share with you my itty-bitty handbook.

DENIAL: This one is difficult. PWAs and care partners go through several forms of this. Let go of it. Time is precious.

ANGER: You have every right to be angry. This is not fair. I found the anger to be healthy. We had a lot of yelling going on. Even though I felt guilty afterwards, I realized that the yelling and fighting were normal. It was part of our relationship and it gave my daughter a sense of dignity. She was still holding her own.

FEAR: This is simply a matter of education. I suggest you take advantage of every support group you hear of. There are more and more articles to read and the medical staff of your hospital will be at your disposal. Remember: this is a learning situation for them too.

LOVE: I can promise you new and meaningful relationships. Open yourself up. My PWA and I experienced an abundance of love from a myriad of unexpected sources. During our last weeks together, I was able to experience total and unconditional love for my daughter.

FRUSTRATION: Take it one day at a time. And if that is too overwhelming, break it down to whatever you can handle--an hour, or ten minutes. YOu have a disease that has had a lot of bad press. Give us a chance. We're out here and we want to help you.

LETTER FROM A DAUGHTER
Reprinted with Permission from "WNYAP UPDATE" (Buffalo, New York)

I am 18. I am quite new to the AIDS scene, but, I have had to deal with it in many ways because my father has AIDS. He is currently classed as ARC (AIDS-Related Complex).

When I first found out about my father's illness, I wanted to lash out at everyone. I was in deep shock because I always thought that those things happened to other people. All of a sudden, I was faced with the problem of handling my own feelings for my father. I was not ready to face the fact that I had a father with AIDS.

That happened in December.

In March, after holding a serious grudge against my father, I finally decided that I should call him. I wanted him to know my anger and I wanted him to know my fears.

I questioned, yelled, and cried.

After that I realized that I had to find out everything that I possibly could about my father's illness. I had to know what the possibilities were of him getting better or contracting a full-blown case of AIDS. He now sends me information to make me understand a little better about his disease.

I used to hate my father, but, how could I possibly shut him out, when I am the only family that he has left? I am away at school now, and to be perfectly honest, I didn't want to go. Every time my telephone rings, I jump in fear that it is going to be a doctor or someone notifying me of his passing. The mere thought scares me to death.

So many people are uneducated about AIDS and it really is a shame. When I found out, all I wanted to do was tell somebody about it so they could tell me that it was going to be OK. But, I couldn't turn anywhere because I didn't know who to trust.

So many AIDS victims are out there, lonely because they think that nobody cares. Well, my answer is this: Look in your heart, deep down you'll find that someone cares and that you are really not alone. There are people who want to help if you'll only let them. The worst thing you can do to yourself is shut yourself in.

If you have AIDS or ARC and you're reading this and thinking that I don't know what I'm talking about, think again. I do know. I feel my father's pain each and every time we talk.

A LETTER TO MY MOTHER
AND THE PRESIDENT
OF THE UNITED STATES
by Victor Bender

Dear Mom and Mr. President:

Over 11,000 American men, women and children have been stricken with a frightening fatal illness. Nearly half (49%) of that number have faced painful deaths, and those who still live knowing that they too will soon die are bravely fighting for extra months or days to beat the average life-expectancy statistics for their particular cancer, disease or infection. Some will win and others lose, but most will die soon. Within one year 10,000 more will know their agony and live with it every day until soon they too will die.

Would that it were not enough to bear the fact that no matter how well they feel today, death may come next week, next month, next year, but almost certainly at the latest by the next year after, many are faced with poverty and discriminatory acts while they wait and fight due to ignorance, indifference and fear.

People of importance to themselves and American society, upstanding taxpayers and proud citizens faces the loss of their jobs and homes, their savings, their hopes and worst of all, their dignity, due to their inability to work, or worse, due to public panic caused by lack of education.

Relatives, friends, clergymen and even doctors fear to be near them, having never been informed that causual or even close contact carries no threat of contagion. Informed others refuse to listen to or believe such facts, due to psychological problems which cause aversion not to the individual, but to the sociological group to which that individual might belong. Employers fear for the public image of their corporation, firms, shops, or restaurants. Compassionate people fear personal association with homosexuality. Mothers and fathers work to protect the family name from shame: "I love you, son, but I don't want publicity." "Why does everyone have to know?" "Talking about it will do no good."

Those who have worked all their adult lives and have great pride in their accomplishments as they seek to fulfill dreams and set new goals suddenly find themselves depending on government disability checks, food stamps and Medicaid. Insurance companies hire teams of lawyers to find loopholes and other means to cancel their health insurance policies. Landlords evict. Employers serve notice. Wheelchair companies refuse to rent ("But you can buy one"). Ambulance services refuse to pick up, hospital social services refuse to find shelter, parents refuse to house their children. Strange facts.

Researchers beg for more funds. Scientists refuse to share information as they vie for the Nobel Prize. Drug companies push their "miracle cures" and market them wherever they can--south of the border or overseas. The media present the latest horror stories to increase ratings, readership, and commercial advertising rates.

Private practitioners "specializing" in AIDS and related disorders have office hours resembling cattle calls. Dental clinics willing to care have three month waiting lists. Thousands face death, but what wonderful business opportunities they afford the ambitious American dreamer: "They'll find money if they want to live longer. They'll find it if they think what they buy will help them. They'll find money if WE think our product or service can help. They'll get money for anything we tell them might do something to help in some way." They're desperate--the best kind of consumer.

I have AIDS. The cure is not on the horizon and as the virus varies like cockroaches developing immunity to every insecticide created, the cure is unlikely. Experimental drugs are in "phase one" of testing, which is equivalent to an extremely well-aimed shot in the dark. I can't work now. From nearly $1,000 per week in salary to $135 per week in union disability for 26 weeks, my savings will go soon enough to bring in government help with food stamps and a little over $400 per month. I have a beautiful house. I hope my family will help with my expenses. I love them for their support as I love my friends who care a lot. I care a lot, too. I love you, Mom, but there must be publicity. Everyone must know. Talking about it is all I can do.

What can you do? What will you do? Why isn't someone doing something? I am, and I won't stop; but I might die. I'm not on a political soapbox--there's just nothing else for me to do right now.

All my love,
VICTOR

Excerpts from
AN OPEN LETTER TO LOVING SISTERS
by Sam Alford

Dear JoNell and Diane:

I write this open letter to you for special reasons: (1) as sisters, you deserve recognition for being such wonderfully loving care partners during my illness; (2) writing this allows me to permanently express the gratitude and love I feel for each of you; and (3) hopefully this will be read and become a universal thank-you to ALL sisters of persons with AIDS who have received the unique kind of care and support which sisters alone can provide and which helps us so much physically and emotionally.

April 1986 marks the 18th month of my journey with this disease. During that period, I have participated in nearly 100 meetings of various support groups. While I frequently sing the praises of Mamma and Dad (indeed, the entire family), I often refer to both of you and how your periodic trips have given me emotional nourishment and strength.

When I relate these stories in support groups, I have been struck by the number of PWAs who express similar stories and feelings. You gals, it seems are truly a special breed, and I am certain other group members are equally grateful to their sisters as I am to you. We lovingly acknowledge your special qualities and your abilities to accept and support us unconditionally. Personally, I think there is no finer gift that can be passed from one sibling to another.

[W]hile I directly thank you, JoNell, for the ways in which you have helped provide me a sustaining foundation on which to live, this is also an acknowledgement of our parents' sensitive and successful teaching of love among us four children. I strongly believe many other PWAs feel equally proud of their sisters and how they "rescue" them so often. On their behalf, I express the "universal thank-you" I spoke of at the beginning of this letter.

Most of us PWAs recognize our sisters have their own needs and families which need attending, but the truth is, your support can be and often is the turning point in our attitudes toward AIDS. Certainly, JoNell, you have allowed me to witness you at your most unselfish, sensitive and loving best. I'll carry that knowledge with me throughout life and beyond. And that you have taken the time and interest to study, learn and teach others not to fear is the greatest gift of all! You make me proud!

Dianne, you have become the "surprise package" of my middle aged years. It has been astounding for me to learn how wisely you've reared your children, helped your husband in the management of your business and still had time to care for me. I so appreciate how you've allowed your faith in God to be the source on which you completely rely. You are simply remarkable in your ability to give so much to so many. I applaud you, sis!

* * *

I tell both of you all of this because, I believe, as unique as you are, you still are representative of many sisters who live in rural areas and who have dared to confront the issue of AIDS head-on. I know this comes out of a strong love and respect for me. That takes courage in Mississippi and demonstrates an intelligence and sensitivity of great magnitude. You have become such important persons in my life. You have forgiven my adolescent nights of trying to scare you to death, and accepted me as a gay brother, as well as a person with AIDS.

How can I explain the happiness you create in me by every action you take which shows your lack of fear and determination to help me get better? Your spiritual commitment has strengthened mine and, like the special sisters of other AIDS patients, you have allowed love rather than fear to guide your actions. Thank you.

While your acceptance of my present situation isn't totally unique, it is special for me. I trust and hope I can convey in this open letter to you that all sisters are blessed with this gift, but only special ones let it flower in the face of AIDS. The challenge to you is great because the news media distorts so much, but I believe blood really is thicker than water.

Why else are children born into the same family unless there is a Divine Reasoning or Master Plan? I pray for all those sisters who have not yet conquered their fear of AIDS and are faced with a brother's or sister's illness. I pray they, like you, will find a way to make the commitment to "be there" when the time is necessary.

Dearest Sisters, thanks for your love and support. to all the other sisters who already do and will support PWAs in the future, God bless and guide your way.

With love and admiration,
Bubba

FAMILY
by David Garfield

The first time I returned to visit with my folks after telling them of my diagnosis, I brought Louise Hay's healing tape, "AIDS: A POSITIVE APPROACH," with me. I didn't know how receptive or ready they might be for her--or I might be--to sit with them as Louise mentioned bathhouses, drugs and some of the more self-diminishing aspects of gay culture. After dinner, I brought out my tape player and we began to listen, my dad and I seated at the kitchen table, my mother, rubber-gloved, leaning against the stove.

My dad jingled the coins in his pocket, occasionally glancing furtively at the back door in case my sister might suddenly enter and we'd have to "dash for cover." My mom pretended to clean the stove several times. But as Louise's calming and insightful words continued, they finally settled and really listened.

The first side of the tape finished, my Mom immediately said: "I take exception to two things--multiple partners and drugs."

"Mother, that's so anyone who's hade those experiences doesn't judge themselves further."

"I understand. I just don't agree."

The second side of the tape is a relaxation and guided meditation. I asked if they could stand more. My parents suggested we go up to their bedroom--more privacy--and to my amazement (I'd explained that I sleep with Louise's second side nightly) we entered their bedroom and they both lay down on the floor where I joined them.

Louise begins by directing your breathing and relaxing each part of the body. "This is just what my exercise instructor has us do at the end of class."

"All right, Doralee, be quiet now and let us listen."

The tape concluded with the powerful and moving vision of giving love and gentle comfort to the frightened children within both oneself and one's parents, making these now loved and soothed children just the size to fit into your heart, and keeping them there always.

We stayed up together. My mom and dad had tears in their eyes.

"This is a beautiful tape."

I am blessed. I have not only my natural family growing brighter and more one in our love, but I also have my beautiful family of brothers and sisters struggling with me to learn and grow through illness into health.

Share with your natural families at this time if you are able. Share with us--your family.

When the heart opens, anything is possible.