Guest Blogger

Learning to live and love all over again

Filed By Guest Blogger | September 12, 2008 9:00 AM | comments

Filed in: Living
Tags: AIDS activism, CD4 count, HIV prevention, HIV/AIDS, Indianapolis, Kim Johnson, personal stories, suicide

Editors' Note: Longtime Projector and today's guest blogger, Kim Johnson, was the youngest of two boys who grew up in a small town in south Alabama. He graduated from Auburn University, attended Law School at the University of Alabama, and from the age of nine was involved in politics of some kind. Kim and his partner John live in a 150-year old remodeled barn house in Indianapolis.

kim-johnson.jpgIt was May 1, 1974. Joe and I meet at an Indianapolis bar called the Déjà Vu. We spent the next seven days together not knowing our lives would become as one for the next 29 years. There was a book title then, Seven Days in May, that was often referenced somewhat jokingly when we told people how and when we met and about our first week together.

Those were the early days, the happy, carefree days. Joe and I dated by telephone and long distance for several months before moving in together in Washington, D.C. After two years, we relocated to Joe's home city, Indianapolis. That was 1977.

Our relationship was a whirlwind of activities, building lives and careers. We had fifth, seventh and tenth anniversary parties. But on Thanksgiving morning 1987, Joe's 16 year-old son, an only child, was killed in an automobile accident.

My, how our lives changed. Talk about searching for answers, a raison d'être, well, there wasn't one. Joe's life, and therefore, my life, was turned upside down. Yes, there was grief therapy; there was this church and that church, counseling, every conceivable effort to put things back the way they were, but like Humpty Dumpty, the pieces just never seemed to go back together again. Afterwards, Joe's best friend died of AIDS, my best friend from my years in Washington died of AIDS, our parents, his and mine, died, but our lives continued and our relationship seemed strong.

I thought that we had survived all of these tragedies and I thought to myself that we had become great role models.

Denial

Fast forward to 2002. We were not really role models at all. We were like everyone else, gay or straight. We were just wrapped up in our lives and somewhat oblivious to so many things. I went along with Joe who did not want to be tested for HIV because he did not want to know. He didn't want me to be tested because he did not want to know that either. We had not kept up on the advances of treatment and only believed that, if diagnosed, we would die horrible, stigmatized deaths like so many of our friends.

Even though we both suspected we had AIDS (we never considered being HIV-positive as that was just a synonym for AIDS), we convinced ourselves we were better off not knowing for sure. Why? Because, in our deepest fears, we knew the answer. We came out in a sexually charged era and we were sexually active and not monogamous. We believed AIDS was a death sentence and there was nothing one could do about it.

My story is not unique.

I became very sick with one problem after another. I secretly sought an anonymous HIV test that came back inconclusive. Shingles, panic attacks, electrolytes severely depleted, thrush, coughing, shortness of breath, no sense of taste, exaggerated sense of smell, can't eat, can't drink, a "type" of pneumonia, weight loss, other problems and ailments with long names, trips to the emergency room, then hospitalization and another HIV test, and finally, reality on September 21, 2002. The test results are confirmed. Mr. Johnson, you have AIDS.

My God, I almost felt relief at that point since I had already "known" the answer and I felt prepared. Little did I know that Joe also knew the answer and that he, too, was prepared.

I asked my new and very brilliant infectious disease specialist to talk to Joe. He talked with him for at least an hour. I was in the hospital bed listening as Dr. Kaul explained to Joe how I would live a normal life span, if only I would strictly and faithfully adhere to the drug regimen he was going to put me on.

As Dr. Kaul talked to Joe and explained things in such a compassionate way, I cried for the first time. I sensed such emotional relief. I believed that Joe and I would get help together.

Facing Death

Honestly, I never thought about dying. Everyone else subsequently told me they did not expect me to leave the hospital, but I did.

I had to leave not because I was well, but because I had to attend Joe's funeral. The next morning, Joe took his own life. I can only rationalize he did not want to be left alone as I was his only relative and his "glue" that held his life together. He was so wrong in his assumption.

Joe arranged for my brother, Bill, and his wife, Patti, to be in my hospital room when I learned Joe was dead. Yes, Joe had been well prepared for the diagnosis and he orchestrated quite a lengthy list of extraordinary events just hours before he died. These events will have to wait for another day (maybe a book).

Many, many things have happened to me since September 22, 2002. I buried a partner. I grieved. I began to see doctors. I have seen most of them, infectious disease specialists, otolaryngologists, internists, gastroenterologists, dermatologists, oncology/hematologists, orthopedic oncologists, neurologists. I have learned everything I possibly can about HIV/AIDS. Bill and Patti, my friends who know and my friends who do not have all been supportive.

But, none of this meant nearly as much to me as what happened January 1, 2004. Thanks to my Rio Rancho, New Mexico friends, Bill and Tony, I was persuaded to cut short my Christmas visit with Bill and Patti in Tulsa, Oklahoma. They convinced me that I needed to come to New Mexico for a New Year's Day brunch.

I said I couldn't.

They said I could.

They said we'll pay your way to fly from Tulsa to Albuquerque and back to Tulsa to resume your Christmas visit in a few days.

I thought, no one ever made such a generous offer to me, and so I went.

A New Love

As fate would have it, at that brunch on January 1st, I met John, an extraordinary man.

We clicked, but I had a secret. We spent all of that day and the next day together. There was a sad goodbye on the second. I went back to Tulsa. I called John a few days later from the airport in Chicago and we talked. We talked every day for the next month or so. I invited John out to Indianapolis for a visit. He agreed he would come.

I was excited, but then I started to worry about whether to disclose or not disclose my HIV/AIDS status. I worried myself sick. I was not prepared for disappointment or rejection. I talked to Bill and Tony. I finally decided that I must disclose so I sent John an e-mail saying don't book your flight to Indianapolis until we can talk.

John went to a conference room where he worked and we talked on the phone. I reluctantly told John that I was HIV-positive. John said, "But what do we need to talk about that is so important?"

I asked, "Did you hear what I said? I am HIV-positive, in fact, I have AIDS." John simply said he assumed everyone in the gay community probably was and that he was well-educated about the virus and how it is and is not spread. He said it is a non-issue. He was in no way judgmental. I was flabbergasted, but relieved that he was totally understanding.

We have talked every day since that fearful day. After many trips back and forth between Albuquerque and Indianapolis, John and I decided it was time to go to the next step.

A New Life

As fate would have it again, everything just fell into place. In May, John completed a degree he was working toward and gave notice at his employer he was resigning. Concurrently, he started to get his Nob Hill (Albuquerque) home ready for sale, but it never made it to market.

While building an entrance garden arbor for his home, an acquaintance stopped by and said "I heard you might be selling your house." John said "I haven't listed it because it will take two or three months to get the house ready to sell."

Bob, the acquaintance, said "I want to buy the house now. Paul and I will come by on the weekend to finalize an agreement if that's okay." John thought he might be kidding, but the deal closed 10 days later and, as a bonus, John got to stay in the house, at no cost, through June.

I flew out in June, we finished an irrigation system and some landscaping, packed a Budget Truck and drove the 1,300 or so miles from Albuquerque to Indianapolis. After driving for four days, we pulled into our home in Indianapolis to balloons on the mailbox compliments of our friends and neighbors, Chuck and Ken. A group of friends unpacked the truck, returned the truck to Budget, and all of us sat down for dinner at the Tuscany Grill restaurant.

John and I are a "magnetic couple" or "discordant couple," meaning that I am HIV-positive and he is HIV-negative. The disease is a fact, but it does not define either of us; yet I am now a very serious activist in the HIV/AIDS community. I am on the Client Service Committee at the Damien Center; I have visited other AIDS service organizations (ASOs) and plan to visit as many as possible.

John joins me at a dinner function twice a month where HIV infected and affected people socialize with absolutely no stigma, but with a strong mutual understanding and respect for what brought us together and where we've been in the history and process of this disease.

Awareness

HIV/AIDS is still incurable. It is sometimes manageable through a combination of toxic and near-toxic medications that are lifesaving. Sometimes one wonders whether the side effects from the drugs are worse than the disease; however, being realistic, we know the drugs were fast-tracked by the FDA to save lives. For me, so far, so good.

Today I am 63 years old and I feel good most of the time. I am an advocate for prevention, testing, and medical treatment. Unfortunately, I was diagnosed late in the course of HIV disease so I struggle to get my CD4 (T-cells) into a normal range, but while immunologically compromised, I am virologically doing exceptionally well. My viral load has been undetectable since February 2003.

I know much more than I ever thought I would about HIV/AIDS and HIV meds. I want to share my experience with anyone who may be struggling with concerns about HIV/AIDS. Anyone who can benefit from my experience needs to know that there is help available and they can talk about their questions, fears, and hopes in a safe environment. It took me a long time and a lot of money and heartache to understand that there is help regardless of your situation, station in life, or your financial means.

When John came into my life, my life changed. John gave me a new inner strength, courage, honesty, and openness to face life's adversities. His love has been empowering and refreshing.

My mission now is to be more open (yes, there is some risk to that), and to get the message about HIV/AIDS out so that people know everything they possibly can about the disease so that they can obtain services.

Trust and confidentiality are essential to good communication.

This article was originally published in this month's Positively Aware magazine.


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What a powerful story, Kim. Thanks for sharing it with us. I know you've been a reader since before we went national.

Since I got the privilege of formatting and proofreading your post last night and scheduling it for this morning, I immediately thought of you when Bo posted last night about his reason for never getting an HIV test until lately.

Bil, you also did a good job of editing. I never quite know when to stop talking about the Ryan White Planning Council and the work we do there. You made the post more interesting with your edits. Thanks for that.

The new CDC statistics that reveal 72% of new HIV cases are from MSM (men having sex with men) should open our eyes again to HIV. The problem of HIV/AIDS is still huge and it is not going away anytime soon.

I, too, read Bo's article and was pleased that he and his friends got tested. I think it should become routine for every gay person and it should beome standard practice whenever a man or woman has a physical examination.

Also, young people too often feel invinceable (it can't happen to me), but bad things do happen to good people. Never be lulled into a false sense of security by those young, fit, athletic, happy guys in HIV pharma's advertisements. The ads would have you believe that all you need is one pill a day and HIV/AIDS is no big deal. It simply isn't like that at all. HIV/AIDS is a big deal. It will change your life forever.

Thanks Kim. I cut most of the extraneous stuff with statistics and technical information along with local HIV/AIDS orgs since the post was going national. I tried to highlight your story as versus your information; the story was what captured my attention.

If you'd like to read the original version of Kim's post, click through to Positively Aware magazine's version.

Kim,
Your story was inspirational to me, and thank you for sharing it. I found out that I was HIV+ in January of this year, and have had a difficult time dealing with my status since then. My negative partner of almost 8 years and I decided to fool around with a positive guy for New Years, and I had a raw throat at the time - I became positive after only giving the guy oral and he didn't even climax! I've never had unsafe sex with anyone in these 8 years, and my partner continues to be negative.
My partner is now my x-partner, because he couldn't deal with me and my sudden interest in my health and not wanting to go out and get trashed several times a week! That was a lot to deal with, as well.
I stuggle with the thought of finding someone that I can love and spend the rest of my life with...and your story gives me hope. I'm very lonely, and I'm trying to get out and trust my friends with my new status. For the most part, they have been very supportive...but it really is hard to trust people.
There is good news for me. I'm very healthy, and if my health stays as it is - I might not have to take drugs for a very, very long time. My CD4 count is wavering between 700 and 900, and my viral load continues to fall. My doctors tell me that I'm as healthy as a horse (and hung like one too!)(sorry)...and that I should worry about dying from things like high blood pressure and high cholesterol!
They won't put me on medication unless my CD4 count goes below 400....so, I do feel very lucky in that respect.
Anyway, thank you for sharing. As for everyone else out there, get tested!
Thanks again, John

Brynn Craffey Brynn Craffey | September 12, 2008 2:28 PM

Wow, thanks for sharing these details from your life, Kim!

I'm really sorry you've undergone so much loss in recent years. I know from personal experience how hard suicide is to recover from, even compared to other deaths. I hope you got or are getting help there.

And I'm happy for you that you've found a new love! (A little envious, too. As an FtM, I sometimes wonder if I'm going to find love again in my life.)

I have no doubts that you will, Brynn. You're a beautiful person.

Brynn Craffey Brynn Craffey | September 12, 2008 5:24 PM

Aw, Bil...Thanks! Some days I get the blues feeling like a fish out of water in conservative San Diego.

John, your numbers are great. What most HIV- don't realize is the importance those of us who are HIV+ put in the numbers. The Viral Load or virologically being compromised(being undetectable is ideal) and the CD4 or T-Cell (being immunologically compromised) counts are the Alpha and Omega of HIV/AIDS awareness once you are diagnosed. I would love to have your CD4 counts, but I'm getting better every time I test.

Now, as far as you finding a new partner, it will happen. Same for you, Brynn. Love never happens when you think it will or should or just because you want it to or feel deserving; it happens when fate steps in, or the stars align, or "you name the scenario." Good luck to you and let me know if I can help you in any way. And, thanks everyone for your comments.

Robert Ganshorn Robert Ganshorn | September 13, 2008 2:49 AM

Kim, it was beautiful, and a powerful message to others that life itself always includes hope and change along with obstacles, defeats and victories.

This is the best Bilerico post, ever, by far! Thank you, Kim.

Robert and Nick,

Thank you for your generous compliments.

Thank you for telling readers that there is life and love after a positive diagnosis. Even today there is still so much misinformation out there about HIV/AIDS. Keep sharing your story, Kim. You know how important it is.