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Marilyn Howell -- My Thoughts

Fall 1998

One year ago, I went with my husband to my doctor's to check on what we were told might be a peptic ulcer. September 23, 1997, I was told I had acquired immune deficiency syndrome, but the good news was I did not have an ulcer. Evidently, I figured out that I was infected years ago, even before I moved to California. It had never occurred to me (or my previous doctors) that this was a possibility.

After a good two weeks of quiet numbness, my husband called the number of a women's group; "Women Alive." At first he was somber and serious but, within 15 to 20 minutes he seemed to be really enjoying the conversation. When the woman asked if she could speak with me, he handed me the phone and I met Marilyn Howell.

She was so warm and caring, like a mother soothing a frightened, injured child. She kept talking and telling me about this "chat" group she put together. There was one that Thursday. Did I want to come? We would have tacos, and it would be really great. She kept promising these tacos and how good it would be to meet me and have me meet the girls. Soon she had me cracking up as if we were old friends. I couldn't wait to see her. I hung up feeling a little happier and not so horribly alone.

I went that Thursday. I brought a bag of chips and some salsa. Marilyn brought fried chicken. You know, in all the times I went to Thursday chats, we always had lots of food. Marilyn was big on feeding people. But we never did have tacos. Maybe those promised tacos were her way of luring me back for the next "chat." They became a sort of running joke between us.

She would ask me how I felt. I would ask about the drugs I was taking. What to expect. How to take them. How to remember to take them. She offered whatever answers -- or theories -- there were to give. I didn't find out 'til much later that even while congratulating us for our undetectable results on various combination therapies, there wasn't a drug left which Marilyn hadn't used and gone through. If you asked, she'd tell you she had over a million copies of HIV in her body. But only if you asked. Otherwise, her focus was always on someone else. Marilyn was full of hugs and laughter and support for everyone.

Marilyn really got me going, encouraging me to become involved. She knew I felt there was a gap in information and understanding between the medical establishment and most women's needs. I joined her at community forums on policy and government funding. She was avidly trying to secure scholarships for those of us interested in attending the Geneva conference this past June. After all day and night working 3 jobs, she stayed up late to write letters of sponsorship for us. She knew she was too sick to go.

There was true honesty in Marilyn. She hid nothing and she sugar-coated nothing. She told it like it is. Yet, she kept her chin up and her attitude looking forward. You felt that your tomorrow's were hopeful and that today's challenges are winnable. Marilyn was at Women Alive for us, even though neuropathy swelled and crippled her feet. Never stopping, she'd be off to a trailer to talk to kids on the street, even though fatigue would force an impromptu cat-nap on a sofa before she could leave.

Today, September 23, 1998, we open the Marilyn Howell Memorial HIV Center as a way to honor her life and her work. My caution, however, is that if we simply pat ourselves on the back for a nice building we will, in some way, insult that same hard working spirit we wish to glorify. She would urge us here today to take an active role and participate, as indeed, she did every single day -- for us. So, we must pick up the torch and keep her work alive in us. Come to the center and volunteer. Donate goods and services needed to keep it running. Give gifts of financial support. Spread the word to women in need. Most of all, remember tomorrow what we did here today.

Everyone should learn about HIV and AIDS. Talk to kids -- at home, in schools, on the streets and in the shelters. Demand accountability from the political sector on HIV issues, remembering to vote accordingly.

Marilyn emphasized personal responsibility, too. If you told her you were HIV positive she'd tell you that now is the time to: Develop an open dialogue with your doctor. Be honest with yourself about any risky lifestyle practices and learn safer methods for enjoying those choices. Love and respect yourself, and don't compromise for anyone who doesn't. Get treatment and support.

If you said you were HIV negative, she'd say now is the time. Develop an open dialogue with your doctor. Be honest with yourself about any risky lifestyle practices and learn safer methods for enjoying those choices. Love and respect yourself, and don't compromise for anyone who doesn't. GET TESTED.

As a volunteer on the Women Alive Hotline, I answered a call from a teacher who was building a hall display for the school theme on "Respect." She wanted help thinking of people with AIDS to post for her students so they would learn respect for "those with this horrible virus."

She mentioned Arthur Ashe and Magic Johnson. I told her of an HIV positive 15 year old named Justin LiGreci. I read about him in POZ magazine. He is in a group called "T.H.E." or "Teen HIV Educators." He visits schools speaking to fellow students about his life with HIV and AIDS.

She said that probably wouldn't do because no one would know who he was. She had thought of Rock Hudson and Robert Reed. "Why Robert Reed?" I asked. "Because he was the Brady Bunch Dad!" she excitedly answered. I volunteered Ryan White for her display. "Who? Would they know him? Was he famous? What about Andy Warhol? Did he die of AIDS?"

If I were to put up a "Wall of Respect" there is a name that I believe we should all remember: MARILYN HOWELL.

ode to marilyn

Marilyn's Howl
The envelope, as addressed
to Marilyn's Howell,
arrived the next day.
"I hope you are feeling better."
And in truth she did.
So much better.
Resting in peace now.
But Marilyn's Howl
goes on:
Be smart.
Get informed.
Use condoms
Use clean needles
Get tested
Start treatment
Stay Alive

-- by Catherine Morris

Back to the Women Alive Fall 1998 Contents Page.

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This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.
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