The Patient Experience #3: A Difficult Diagnosis

Posted on by Harlon

difficult

When I was 23, I had my bloodwork done because people around me, gay men, young, handsome, bright men, were dying and the only indicator of why people were dying at the time was found in the blood.

I went to the Doctor to get my results during my lunch break at work.  And I was 23, I was smart, I had a bright future, and my Doctor told me that I had tested positive for AIDS and that I had, at best, two years of life left so make the most of it.

As cruel as it sounds now, it was the right thing to say then because that is what happened THEN.

I went back to work at a customer service call centre for an elite credit card company.

I was shell-shocked.

Yet, the phones kept on ringing, and I kept saying “how can I help you?”.

There is no other way to say it than to say that that was a really fucked up day that really fucked me up.

They say timing is everything and it’s true. Just as I was ready to launch into a bright future, I was shot down.

As a gay men, I never really got into the gay scene. My friends were my friends because we felt a connection and I met them through University, through house parties, through work so I never had a cluster of gay friends. All along, throughout my life, I never fit in.

I was now HIV+ and I knew that meant I would fit in even less.

For me, being gay was about love, so I didn’t look for love in bars or bath houses, I figured it existed, somewhere, but I didn’t turn to the usual suspects. I have had a few very meaningful relationships in my life. Somehow we found each other. And after it’s all said and done, isn’t that what we strive to do, as human beings, to find each other.

Meanwhile, back to the Rock Hudson days, guys that I knew from the gay group at the University of Waterloo were dying.  The gay group was called GLOW which always made me laugh. Gay Liberation of Waterloo.  The whole gay thing has changed a lot but that’s a different post.

Smart, promising, beautiful 23 year old gay men were dying. I was one of them. They were dying awful deaths and often in awful surroundings. The stories I would hear about the Mother grieving the death of her son, but the Father saying he got what he deserved.

I didn’t die.

I didn’t get what I deserved.

Peace of mind was never an option for me.

I had moved to Vancouver after I graduated from the University of Waterloo and I met new friends; and most of them were gay because an easy way to meet new people is to find out where people that have things in common with you hang out.  So I went to gay bars and met people. I made friends. Other times I met someone and had sex. I was 23 and a male. That’s just what we do; if we can – and back then, when you were gay, you could do that very easily.  And it was respectful in its own way.

The people that were dying weren’t close to me; they were acquaintances so I felt the loss but it felt weird.  I wasn’t profoundly close to the people they were dying; they were people I was familiar with.  There was loss, lots of loss, almost everyone I knew who was gay died.  I didn’t feel intense grieving, I never did, because I was never that close to anyone. Yet, I was feeling more alone than ever, and more hopeless.

As I write this, I wonder, how much of that has changed. The disease changed. I didn’t. I couldn’t keep up with it. I was still shell-shocked.

I just felt scared.

The person that I was closest to that had AIDS was me and, being a wizard at Mathematics, the theorem would predict that I would die too. Sometime. Soon. And it would be ugly and scary. The scariest part was how devastated my Mom would be.

That was 1987 and I felt that way for a long time.

Because I felt that way, I lived that way. I never made longterm decisions.  I got a job with benefits so that if anything happened I wouldn’t be a burden to anyone and then I saved my money and once I’d had enough I would quit my job and travel.

I have traveled the world and seen so many things that it blows my mind sometimes.  That’s the good side of facing your mortality, you live life vividly. I guess I am hoping that all this will lead me to a point in my life where I can say “I have no regrets”.

That was my pattern. Work. Travel. Work. Travel.  The original equation had DIE in it, but it just didn’t happen. I kept living.

I kept living to die.

Drugs to treat AIDS and turn it into HIV/AIDS began to emerge and they went from salvage therapy to something better.

I can’t say that I consciously made a smart decision, I think my choice just turned out to be lucky.

I didn’t go on the early drugs.  The early drugs kept people alive but they are just dying of other things these days.  Or they have become disfigured so they isolate and hide.

I stayed healthy.

I looked healthy.

Men were attracted to me. Men rejected me.

I never ever truly succeeded.

I have failed.

I was living to die.

I was living to be rejected.

I was living a life of living to die. By the way, we are all living that life – but I felt it and I lived it profoundly.

I did not think about the future.

I am paying the price for that now.

Fast forward, and that means skipping a whole lots of hit singles, but here I am now.

I survived.

Not too sure why, but I think it had a lot to do with the mind body connection, or maybe I just had a weak strain of the virus.  I tend to debunk the latter, because I’ve always had health issues, ever since I was a child, so I don’t tend to get weak strains, I just tend to get sick a lot, or diagnosed as sick a lot.

For some reason, I always got better.

My health that is.

And every time it came at a cost.

I try not to think about all this too much, and try to focus on where I am now.  As you probably can tell, I am struggling now, so I get sent it to that loop, am I struggling because of the past or because I am not living the present to the fullest or am I still afraid of the future.

How do I make that all go away?

And then, where do I fit in?

Finally, how do I rediscover hope?

Or maybe, it’s always been here.

52 thoughts on “The Patient Experience #3: A Difficult Diagnosis”

  2. Hello Harlon,
    Thank you for being so candid and sharing your story. I recently became very interested in the early days of HIV/AIDS after reading “My Own Country.” The 80’s seemed like frightening days for people in the gay community. I was born in 1987 and I just recently learned all of this! I even visited the National AIDS Memorial in San Francisco. I’m so honored and inspired by everyone who has bravely fought this illness. I wish you lots of happiness, take care darling! xoxo

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  5. Harlon, I was dancing in NYC in the early 80’s and witnessed first hand the horror of the early days of AIDS. As if the disease wasn’t bad enough, the treatment of people with AIDS was horrific. It was back then, a guaranteed death sentence and the emotional toll must have been crushing. PTSD sounds like a normal response for such a traumatic reality to me. I don’t begin to understand the “whys” but my wish for you would be to shed your survivors guilt and accept the fact that your mission here is not complete. You are not squandering anything here. You always make me think and laugh and you touch more lives in positive ways than you will ever know. You are worthy.

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    • Thanks for a great comment, and honouring the early horrific history of AIDS. I remember when the term “survivor guilt” was used quite often and then it seemed to have fallen off the radar. You reminded me that I am carrying that, I had just forgotten so, your words have inspired me to shed that state of mind and replace it with being in touch with my resiliency. Hugs, Harlon

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  7. I’ve lost friends to HIV and yet I have many friends who have lived well for decades while managing it. It is difficult sometimes, being the survivor. One is blessed, one is thankful yet one wonders why.

    Well said entry.

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  8. Hi Harlon
    Your challenges are steep, you cross the mountain and keep pushing for. I was active in the Gay community for years because my friends hung out at gay bars. I loved it since it was almost male,

    I danced had a great time, discovered a new way of living as a couple. I was way to young, not sure 14 yrs old is the right age to dive into the world. I celebrated the same with one guy, total hoot, we would dress up in one of my long dresses, he always wore a fans to reminder everyone it’s his birthday.
    I felt protected when my friends, best part, no on hitting on me. I had a few women ask to dance, the first time blew my mind. I have a total crazy like, maybe the experiences I had until my teenage years have helped me grow when Diagnosis surviving with Chronic Lyme,

    I think of you and how many you have helped by being honest and telling your background, it’s difficult telling story you face.

    I have a couple question? Email when you get a chance, I think we can help many in the same place or in past or future. You encourage people it inside with a devastating illness but your life has touched many deal with the demons in you certainly have to start

    Please email, when your can, msandorm@verizon.net, I have a couple of ideas of how we can you. I look forward to hearing from you.
    🙂
    M
    Big Hugs!!

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  9. Thank you Myra for such a genuine comment, it speaks to a lot of which I didn’t speak about in my posting. I loved how you mentioned that being brave isn’t about being flawless. People are using the word resilient theses days, so I tend to stay away from that word, but the truth is I did keep living. Part of existence is suffering, yet amongst that, I have always been able to find joy and perhaps because of the life that was prescribed to me, the side effect was that I am living very wholeheartedly – and here I am, and look at all the wonderful comments – and how there is an element of relatability. We all have the stories of our lives and I am glad that our threads have become woven together. Much love, Har

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  11. A powerful story of a beautiful man, Harlon. I feel privileged to have read it and been part of this sharing here. I can only imagine the surreal, unbelievably awkward abyss of manning the phones after receiving this type of information–of being so shocked by what life has served up. It’s always stunning when our worlds are rocked, and we come into contact with mortality, and the possibility of visceral pain and suffering.

    One thing that I think in reading this is that for you it was HIV/AIDS, and being gay, and how these attributes were intimately woven together for a time. For others, it is something else. A blood transfusion that gave them a disease. An insect bite that gave them a disease. A genetic trait that gave them a disease. We’re all, as you wrote, forced to decide how to be in relationship to these possibilities even as we live. What is the point of living, if we’re just going to get a blood transfusion and die? What is the point of living if an insect bite will initiate decades of chronic illness and pain?

    What is the point, we humans all wonder, if this isn’t going somewhere, or leading to something? How can we be peaceful amidst such chaos and uncertainty. I don’t think we can, actually, but I think we have the ability to identify with what lives within us that is unassailable by these temporary conditions. And in doing so, to shine a light through whatever difficulties emerge. And whether you know it or not, as you experience what you experience, in your honesty there is so much shining light. It is beautiful to behold.

    Peace
    Michael

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    • Thank you Michael for a beautiful comment. Yes, indeed, what is the point of living, other than to experience the joy of existence. I often would find myself thinking, as time went by, and the disease evolved, and felt that I hadn’t and that I wanted the life back that I was supposed to have. I think it’s a natural response, however, as I thought about it more, I don’t know what life I would have had otherwise. I would have had a successful career, be in a longterm relationship, own things, yet how do I know that is the life I would have had. If things had been different maybe I would have been hit by a bus or be unhappy with “whatever things” I had. What I do know is I have experienced life very vividly and faced my mortality and that is liberating. If nothing else, my life is real. As is your kindness and support. Peace, Harlon

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  12. I always knew there was something “glowy” about you, mister! 😊

    Harlon, you most beautiful of men, you were given a death sentence, let’s face it.

    And I won’t even begin to imagine what that did to you emotionally, psychologically, mentally, and even physically. I know that however horrible I might think it was for you to go through life “living to die,” it pales in comparison to your reality.

    Speaking as a Johnny-come-lately in your life, on this blog, I can say this: You are a paragon of beauty and strength. You amaze me constantly. You are a benchmark by which people’s character should be measured.

    Again, I know we don’t know each other that well, yet, but I do speak sincerely from the heart.

    Mad respect to you, Harlon! ❥

    Hugs,

    ~J

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    • Wow, what beautiful words, thank you, although there is stigma in the world, it is very comforting for me there are compassionate and loving people such as YOU out there. I don’t know if you remember the song Love Hangover by Diana Ross, but for some reason your message has me singing the lyrics and thinking about the love within it “if there’s a cure for this, I don’t want it”.
      Love, Harlon

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  14. Aww, sweetest Harlon! Randomly I stop by, read, and go on my way….always wanting to know how you are. Today, as I read these words of yours – “I didn’t die. I didn’t get what I deserved.” – I got chills, and just wished I was close to you so I could reach out and give you the biggest hug!. I miss you, and love you, and am so HAPPY that you did not get what you (did not) deserve. You’re one of the bravest, and kindest kindred spirits of mine. Loads of love being sent your way! ♥

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    • Dear Serena, I am so happy to hear from you and thank you for your beautiful thoughts and I can feel your love and the warmth of your hug. I miss you and love you also and when you speak of me as one of the bravest and kindest spirits I am truly touched. There was a song – and the lyrics jumped immediately to mind “you took the words right out of my mouth, it must have been while you were kissing me”. Heaps of love going your way. xo Harlon

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  15. “I kept living to die.” Yes, you did. But I think you also were dying to live. That could have multiple meanings. Take your pick. I love that you have traveled. And you have done good work. Maybe you will do more good work, or travel more, and write more. But whatever you do, there are reasons you are still here. And I am certainly glad you are, Harlon. As to your closing questions, here is my 2 cents: You can make it all go away from your awaress for moments of travel (physically or mentally) and, as you know, you can cope with it all using mindfulness of the feelings and thoughts or of your beautiful surroundings. You fit in here. And probably other places, too. Hope has always been here and always will be; we just don’t see it all the time, because the darkness covers it up. You wrote that you were sick a lot, as a child, but you always got better. That’s because you are good at healing. Just because we get sick, doesn’t mean we’re not good at healing. Just because we are scared doesn’t mean we are not brave. Sickness can make us good at healing, when we practice healing. You have chosen to live and to heal. Fear can make us hide, or we can choose to be courageous. And though there are dark days, you have chosen courage. You inspire me. ❤ and hugs, my friend.

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    • Dear JoAnna, I was touched by what you connected to in this post and how you shone light on some thoughts and feelings that were once dark for me. Part of the reason I wrote this is I believe that we live in a world that is moving faster and faster and as we move forward, we forgot about the past, how thing have changed, the work that people did, the risks they took so that there would be positive change. I am glad that you see courage in my story and I think it is important that these stories live on – as I plan on doing the exact same: dying to live as you quite brilliantly put it. Hugs, Harlon

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  16. Sometimes we don’t have immediate answers
    We just keep on going
    But somehow our life get enriched
    And we are blessed along the way
    I will share something with you Harlon
    I am a survivor of suicide
    And depression and anxiety
    I shouldn’t be here from all the
    Times I tried to throw life away
    But I am here a day at a time
    I find life everyday as it finds me
    I was lucky I found my wife got married
    And made my daughter my answer
    I’m sixty three
    I still thirsty
    As always Sheldon

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    • Thank you Sheldon for your honesty and your courage. By sharing our stories – and that is what humankind has been doing for centuries; storytelling – I believe that is how we learn and how we grow. I am on your side. Harlon

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  18. I’ve always lived with the expectation that I’m going to die, and I often wonder why that is. It hasn’t made me wiser though, or even more grateful for the one life I do have. Reading this has, in an unexpected way, made all this seem okay to me. Hm. Or maybe not so much okay as… well, what is, IS. Ugh. I’m not making sense. Let me just say I’m glad you’re writing at least.

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    • Thanks Tony, I think you’re making sense – and the writing is just a way of me telling my story, so if you are glad that I am I’m writing it, then that makes me happy that you are reading it. Peace, Harlon

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  20. Thank you for the courage to share so much of yourself and life Harlon. I have no advice or answers, only a willingness to witness and encourage you. I have lived half alive for different reasons. Maybe it’s time for me to embrace life more fully. blessings on your path.

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  21. Hope you’re doing ok. That photo looks like the road to the unknown to me….you know the song…..where every one where’s a funny funny face and the streets are paved with gold, and no one ever grow old…..in that funny land called…….. Every day I feel like I’m headed straight over a cliff and I have to trust that a road will appear. Many times, I hope it doesn’t….but ultimately I have to trust. It’s the only thing I have left….Trust….Promise and Hope fucked off long ago, but for some reason…Trust appeared. Apparently that’s all I’m supposed to have so being mathematical and spiritual together means…my road is always there, but just enough to get to the end of the day. Maybe that’s the Holy Grail being handed to me… Forced to look at One Day at a Time…..Hey is that Valerie Bertinelli at my door. That would be weird.

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  23. My first gay friend died in 1985 at 21 years, a horrible death complicated by Kaposi’s Sarcoma. I remember seeing him in a wheelchair on Davie Street, being wheeled by his mother in front of the general hospital, I was frightened, I’m sure he wouldn’t have wanted me to see him that way so I walked on. And they just kept on dying. I suppose I was in denial about my own mortality and set plans and goals in motion, kept busy, pretending things are going to be alright. I was so frightened I didn’t get an HIV test, I waited for years later, living in denial. When I did finally get the courage to take the test (because I was applying for a US green card) I was once again frightened, I anxiously opened the envelope expecting the worst of news. During the Regan years, a person could not immigrate to the USA if you were HIV positive.

    From David France’s new book How to Survive a Plague
    “These young men both witnessed their friends and lovers dying excruciating deaths, knew that they were next and yet carried on. Some of this was a gut-level human desire to live; some was a means to compensate for the grief that would otherwise overwhelm them; but a lot was simple, indelible courage. This courage didn’t just end a plague; it revolutionized medicine and, in turn, became the indispensable moral force that led, as the plague abated, to the greatest civil rights revolution of our time. This is the first and best history of this courage, and a reminder that if gay life and culture flourish for a thousand years, people will still say, ‘This was their finest hour.'”

    I love you Harlon.

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  26. I know what it’s like living to die. I never thought I would live this long, just for different health reasons than your own. Now all the sudden I look around and I never put any foundations in place for where I wanted to be in the future. I never put thought into what I wanted to be or do with my life because it didn’t matter. Now I look around and I am so far behind others my same age. My life was just about surviving.

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    • I hear you! One thing I keep telling myself is to not compare myself to others, but in a world of haves and have nots, it’s hard not to do. I did the same – I never thought about what I wanted to be or could be, I was just preoccupied with trying to be. As a result, my state sounds similar to yours, I have fallen behind. I am trying to look at things differently now, Thanks for the great comment. Harlon

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  31. Har…

    Each creature has a shelf life. From the time you are born, death follows as an unknown. As such, death is feared . As something feared, many things follow – emotional, physically and spiritually which derail or alter a person. Look at the story of your life. Is there hope? Is there happiness? Is there more? All this even with death looming…an unknown fear on the surface yet deep down, alive. Possibly aware more than others around you of what this all means…what is missing?

    Being brave isn’t about being unscathed or flawless is it? It happens – as everything happens and here you are. Braver still. So much to be said or point out in between the hiccups of the life you just laid out. Yes, hiccups – causing you to stop suddenly and take notice. Subtle but jarring. smiles Now, fading, popping up here and then without rhyme or reason, you are aware from time to time trying to avoid them or annoyed when they do. Although there is a reason for them to occur, you can’t stop them completely. Instead, you live with them. Ugh – why?

    Point is, you lived with it. Maybe you didn’t want to but you learned? Now you don’t? Maybe you weren’t supposed to. Maybe you now want to live differently? All of this leads to more, now less. Keep asking the questions. In the questions lies the answer.
    In the meantime, thank you for sharing and existing, Har.

    ❤️ M

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