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Sunday, November 30, 2008

Epilogue -- When HIV Strikes Close to Home


*** WORLD AIDS DAY ***

"Are you aware that there is the most remote of possibilities that you may not even be HIV positive?" The words stung my heart in ways I can't even explain. I was really upset. In fact, I was very pissed off. He went on to say that "It's probably not the truth....but I want to re-test you again just so that we have a starting place from which to plan our next move with your health." I hated him that day. For giving false hope. For even planting the very idea that my friend may not be HIV positive. How dare he! I mean, once someone has tested positive for HIV, they are retested to be sure there wasn't a false-positive test. This had happened twice...at two different reputable labs. It just couldn't be so. I was clearly irritated that day about him leading him on in that way.


But, let's not get ahead of ourselves. You really must go back and reread When HIV Strikes Close to Home from two years ago on World Aids Day. This will lay out the story more clearly for you. The above story dates to the fall of 1997. I knew next to nothing about HIV. And the journey I was embarking on was not clear. At all. What happened in the next few months was that this friend and I moved in together. I moved to Portland and we set up house together. He never did exactly know how he was infected. I bought every book known to man on the topic in order to educate myself and to help provide him some support. He was recommended to a great HIV doctor and we began the every three months trip to the doctor for the testing of his T-Cell count and all of the other counts that have to be measured. We started an herbal therapy program that kept us very busy. He went through the typical "Do I just have a common cold or is it my HIV acting up" feelings -- never really knowing for sure what it was that was going on. It became just as much an emotional guessing game as anything else. A game that drove deep scars into the psyche of each of us. We kept a complete stock of gloves, antibacterial cleaners, and ways to never touch his blood. We were religious about being careful sexually. Every infection was treated with huge care. Every time the night sweats happened, we just knew that he was one step closer to you know what. All the while, he was a trooper. A world class act. He did what he was asked to; he kept his doctor's visits; he did his best to do things that would help out his body...like stop smoking. We told those who had to know. And kept it horribly private to those who may not know how to deal with such privy information. I mean, the stigma! The shame. It wasn't pretty.


My family in Idaho was one group that we kept in the dark about his diagnosis. I mean, it was all they could do to simply deal with my having just coming out during the last year. There was no way they could deal with HIV information...as far as they knew, they knew no one with HIV. Oh, but they did...they just didn't know it. It was three years later when we were visiting. My partner had gone into the bathroom and I had my mom all to myself for a very short time. My heart was pounding in crazy ways. And I just dove right in and told her that "He is sick...he is HIV positive and has been for three years....I hope you understand and will still love him and treat him the same way you have been." He came back from the bathroom and had no more entered the living room when my mom got up from her chair and move straight across the room and directly toward him. He glanced at me and knew I had told her. With only the heart and spirit that my mom could have, she told him that "He was just like another son to her and that nothing would change....and that she still loved him." And with that, she tossed her arms around him and hugged him. She did her best to educate herself in the following years.


We continued our visits to our neighborhood doctor. We had moved across town and no longer went to see the HIV doctor. It was now seven years later. His numbers still looked remarkably good. Things had settled down. There were no bouts of sickness that kept him down for any length of time. All of his blood counts remained consistent. And during one visit, our doctor recommended that we go visit another HIV doctor....just to be sure that all was being done that should be. This was now February 2005. Years had passed. So, we made our way to an expert in the current affairs of the HIV field. And he wanted to "Start at the beginning, just to be sure we've got a clean baseline from which to work....I want to recheck you for the HIV virus and we'll go from there. Are you aware that there is the most remote of possibilities that you are not HIV positive?" And that's where this whole story started. He drew blood and explained that he was going to recheck for the presence of the HIV antibody. He knew that this had been done at two different, reputable, clinics seven years prior and that all of the tests and retests had been positive. He asked us to come in a week later. But, he said, if there just happened to be any good news, he would call us first thing.

May I just tell you that every single time the phone rang over the next week, we ran for it. Hearts palpitating, hopes running high in spite of knowing that this never happened. I mean, there were false-positives -- but they were caught in the recheck. There were never repeated positive tests....over and over. So, February 16, 2005, we went back to the doctor for the results. The room in the corner at the end of the hall -- I recall it very well. The door was left open and I remember the doctor coming down the hall....I could see him coming toward us. He came in, sat down, and tossed a file full of papers on the desk. And it went this way:



"In all of the 30 years I've been in this field, I've only heard of this happening. It's never happened to me personally. I've never had the opportunity to tell someone this.....But I am happy to tell you that you are NOT HIV positive." It was at this point, that I glanced over to my husband....his mouth was hanging open. Wide open as he stared at the doctor. And it was also at this point, that I started crying. A lot. I can't tell you the deep-seated emotions that flooded over us. Years of worry. Years of shame. He went on to explain that we could second-guess it forever. It could be this or that. But it was strictly guess work. We would probably never know for sure what it was that gave multiple false readings. But, he said, I want you to go from this room and live your life to the fullest...you have been given a new lease on your life." I will never forget walking from that office, into the hospital elevators, and seeing other people around us. Did they know? Could they tell? No, of course they couldn't.


After seven long years, we were hearing information that tossed our whole lives up into the air. We will celebrate our 11th Anniversary together on December 9....just a few days from now. We spent the first seven years in fear and with question. We've spent the last four years shedding ourselves of the preconceived ideas that we had built into our lives. I mean, I never even thought that he would still be alive today for me to be writing to you about it. I fully expected to be partner-less by this point in my life. I was prepared for it on that day way back in 1997 on "the day that started it all. Fear of rejection on his face and in his voice. And my weak struggling words "Of course I'll be your friend." I reached out and, for the very first time ever, pulled his hand and mine together.....down between the two of us where it was warm, dry, and safe. I knew it was time to draw together and not be apart. That's what friendships are all about. For healing and not for hurt.


My dear friends, may I just reiterate that age-old piece of wisdom that we've heard over and over: That we just never know what tomorrow may bring. Simple, isn't it? Sort of rings hollow, even. But it's the truth. For good or bad, we just don't know. This was one surprise that I could never have crafted or created or even dreamed of. That day, that specific ten seconds of time, will be driven deep into my soul forever. I will never forget it. Today, open yourself to good. To happiness. To being better. No matter what.

Today, to my dear beloved husband, I want you to know how much I love you. Your smile, your core, your being. The kindness you bring to my life, and to the world around you, is immeasurable. I never thought I'd have you as a part of my life in the year 2008. I never even thought it would happen. I can't tell you the nights I stared into the darkness wondering. And, today, you're here. I couldn't be happier. I love you. Dearly.

34 comments:

-carywd said...

wow! thanks for sharing your story and congrats on 11 years

Java said...

What an incredible blessing! I'm sure you have a special appreciation for your time together. May you be together for a long, long, long time to come.

Anthony said...

WOW! that is amazing! That, my friend, is one incredible blessing. Live life to it's fullest! :)

DanNation said...

A wonderful post! Congrats on all your wonderful years together!

Sorted Lives said...

You are both perfect for each other.

Lemuel said...

Sitting here, crying, I could only hope that your story could be repeated over and over and over again for the thousands who have this dread disease. What grace has blessed your lives!!

michael said...

Wishing you both many healthy and happy years ahead.

Peace.

travelling, but not in love said...

Wow. And thanks for making me cry at work....

I'm very jealous of what you two have and what you share. You are very lucky, but you know that, no?

Kevin in Danbury said...

Words cannot describe the love i felt in that story.

Happy Anniverserarium a few days early.

annie said...

the story remains a miracle happening. you are correct: we never know what tomorrow might bring. good, bad, beautiful, irritating, life-threatening, we never know. live today as today. to live in the past is dangerous, to live in the future is tripping, just live in the present cuz it's a "present". i love you, brother.

Rob (Inukshuk Adventure) said...

A really powerful and inspiring post that does indeed remind me that we know not what life will throw at us, and always live it to the fullest and take nothing for granted. Thanks for sharing.

Ryan said...

hope u had a good thanksgiving thanks always for sharing and for just being u much love!

bridgeout said...

Truly amazing! I went and read the original story you wrote a couple years ago... and that was moving beyond words. Then to read this post, and your hubby's post on this topic... I am in awe! What a ride, what a gut-wrenching experience, what a love filled life... what a miracle! And what precious perspective I gained today on when HIV strikes close to home. Thank you both for sharing so authentically. I so wish you two many years of free and open love and adventure!

gay/bare/plaisir said...
This comment has been removed by a blog administrator.
emeraldcityguy said...

What a great story, the best to you and Blair!

K-A said...

You two are beautiful. Wishing you both health and happiness on these 11 years and many more.

anne marie in philly said...

wow...I am speechless...but rejoicing in the fact that you two are together and enjoying life!

l'chaim! (raises wine glass towards the west)

Greg said...

Incredible story. I only thought that happened in movies. Congratulations on 11 years, too!

Birdie said...

On this day when I read memories of loss on other blogs, it brings sweet tears to read your story. I have lost my brother to AIDS, and I am overjoyed that you did not lose your love.

LSL said...

Stunning. And meant to be. Congratulations to you both. Amazing, Lewis & Blair.

Nathan said...

Happy anniversary to you both, and what an incredible story.

I'm glad that you shared it.

Ur-spo said...

as is your wont, you write with such passion and elegance.
I've said it before (and will say it again) you two are so blessed to have each other.

Anthony said...

What a touching story. It's great that it has such a happy ending :-)

Michael Guy said...

A most incredible journey, Lewis. I've got the waterworks running now...

Thank you for sharing this story and reminding all of us how very blessed we are each and every day. I fear I squander too much on looking back; nice reminder to move forward with a smile.

Congrats on 11 years, too. That is an awesome milestone. :)

Laurie said...

You love him no matter what!
You're both so lucky to have
each other....Makes ya really
wonder what happened.....

Thank you for really great news...
It's things like that that put
a smile on my face....

TACKLE YOU HUGS!!!!!!!!!!!

Doug said...

Absolutely unreal. I'm speechless. The love you two share is a gift to the world.

goooooood girl said...
This comment has been removed by a blog administrator.
Alexander said...

Beautiful story. I'm so happy for the two of you!

Wayne said...

With tears in my eyes( I'm such a sucker for these kinds of stories) I'm so happy for you both!

TJ said...

Thank you, I know I'm late in posting this but once again, Thank you.

Billy said...

This really got to me - I'm so glad your hubby is healthy!

Congrats on 11 years together!

Geoff said...

Lewis, that was perhaps the most beautiful post I've ever read, and it was because of the the love you both clearly share. Wonderful.

CJ/Rick said...

Ain't that a kick in the pants. Awesome story! Now I'm running late for work. Congrats on your 11 years.

john said...

Congrats on your anniversary.
This is such a beautifully written story...the first one, the one that started it all, brought tears to my eyes...the second brought me to an emotional mess.

Thank you for sharing something so personal...

And you both are so lucky to have a love that transcends everything...