Go on Living, I Guess!: One of my favorite... - HIV Partners

HIV Partners

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Go on Living, I Guess!


One of my favorite films is Richard Elfman's 1980 $0 budget release "The Forbidden Zone", which follows the travails of the Hercules family and their friend Squeezit Henderson through a mysterious door in their Venice Beach basement and into the Sixth Dimension, ruled by the tyrannical and self absorbed pair King Fausto and Queen Doris, played to perfection by the late and great actors Herve Villechaize and Susan Tyrrell. In one scene, the Queen, seemingly worn down by the King's constant philandering over their one thousand year relationship says to him "That's it! I'm hopping the next bus outta here!"

He says to her in a heavy and suave, sexy and tender French accent "No, no cheri! Where will you go? What will you do?"

"I donno. Go on living, I guess!" she answers in a dejected sob.

I too have a long relationship I need to move on from. I have, more or less, known that I have been infected with HIV since February of 1990 and was diagnosed in February of 1996. After four years of treatment I slipped through the cracks and lost all access to healthcare. Through the 80s and 90s I had lost most of my closest and dearest friends to AIDS and what I call AIDS Related Suicide, which is everything from self euthanasia to partying recklessly to the inevitable end. For the next thirteen years I cultivated a close relationship with Mr. Death, sure that any day would be the one when an ethereal Steve Rubel would open the velvet ropes and Drew Okun (aka Porn Star Al Parker) would personally escort me into a club that would make The Limelight look like a Midwestern department store restroom at lunchtime on a Wednesday. I tried drugs and alcohol and partying my self to death but when one is dying one tends to not achieve the level of income necessary to procure the requisite substances nor does one usually have the high spirits that get one invited to events with such goings on. Indeed, three years ago I was living in a friend's basement, in increasingly poor health with chronic low grade fevers, upper and lower gastro-intestinal distress, hot flashes, and the disturbed sleep patterns that are part and parcel with an unfulfilling life and the stress that comes along with that reality, oh, and unemployed. My friend, at whose grace I was sheltered, was losing what little empathy he had for me due to my failures at finding gainful employment and the drugs, and himself had been dealt a dirty hand by Mr. Death with the passing of his only sibling (whom he dearly loved), his mother, and then father in a two and a half year period, so it was understandable that presiding over my slow demise wouldn't be appealing to him. So after two years he sold the house, I'm embarrassed to say, mainly to be rid of me, and I moved into my mother's basement. Evermore suicidal, I knew my mother would never survive that so that will not be an option until she has passed.

None of that matters now, because a year ago, thanks to the Affordable Care Act, I began seeing a Therapist and an Infectious Disease Specialist. I was diagnosed with PTSD and a related depression, am currently receiving Cognitive Behavioral Therapy, and practicing Mindfulness; all of which is going well. I discovered that despite a nearly 13 year hiatus my CD 4 count was in the 200s and my viral load was only in the low 200,000 range, then began and have been doing very well with the drug Complera. My health issues continued, however, and were compounded by pernicious anemia; confounding my Doctor as to what the pathology could be. Then at two in the morning in February of last year, I had severe abdominal pain, so in a snow storm with the temperature - 20' F, I was taken to a hospital emergency room for the first time in my 51 year old adult life, with the means to cover the bill. I had a Cholecystectomy: Gallbladder Removal. After I recovered, it was apparent that all my vexing health issues had gone with my diseased, infected gallbladder and the fist sized, single gall stone that were removed; my depression even abated.

Now, it's time to go on living, I guess! I am 52 years old and living in my mother's basement. I have been unemployed or underemployed for the better part of three years. The closest thing I have to a relationship is with a closeted man who, despite the love we have for each other, the really, really great sex we have, and the nine years we have been doing it, has made it clear that he isn't going to leave his lover of nearly 40 years for the likes of me. Most of my surviving close friends gave up on me during my unspectacular downward spiral and I've never made friends easily. On the other hand I am a very caring, compassionate, and patient man, an exceptionally talented Multimedia Artist, and I am learning that I have every reason to have confidence in my abilities. In the mean time does anyone know of a group of like minded people learning how to begin a new and happier chapter in a life they never expected to be living?

8 Replies


This is one of the most touching and frank personal stories I have ever heard and believe me I have heard a few.

You make my 17 years living with HIV sound like a dream.

Thankfully, we are now living in different times. I have pretty much stopped having to go to funerals every few weeks, most of my positive friends who made it through to the mid nineties are still alive and mostly kicking.

Your posting tweaked so many recognisable memories, experiences and sentiments that I see in myself, especially the self inhalation, which, funnily enough HIV cured me of. Well, HIV and the love of a good catholic boy who utterly changed my life and I have had the joy and pain of 25 years almost inseparable companionship.

Thanks for the posting and yes, go on living.

As with all wars, lest we forget...

With much love and admiration.


Trotski in reply to pauldecle

Thanks so much, your words are truly appreciated.

Wow is all I can say now.going to bed but would love to chat later.almost in the same kind of situation. Have a good night. Daniel.

Would love that, Daniel. I am currently having a bad and painful reaction to a vaccine I received on Friday so I have only slept four hours in the past two days. I'm hoping to pull my self together enough to get to the pharmacy to get the remedy, but if you should get this in the next hour (it's 9:10am EST in my locale) I will do my best to be available.

Wow....what an amazing story and clearly written from the heart,I am so,pleased you are now getting some support and despite everything you have not only found some therapy that is helping you,you are also talking about it through your post on here and your story has inspired me..truly amazing.

You owe it to yourself now to stand proud and continue to push ahead with the emergence of a new you.never forget your inner purity,we are all born pure and only learn to become less pure through life,we all choose our paths and can also choose to change paths and it's clear this is what you have done,changed your path and are now being good to yourself again.

I will actively look out for your posts on here,I can't tell you how compelled I felt to read and re-read your post,truly amazing.

There's a lady called jody whitely on you tube and she has lots of meditation videos which I find useful especially at bedtime.

Mindfulness is proven to help too.

Big hugs to you and much respect


Thanks so much, Neil! I hope you realize how much just knowing that others know and can empathize with my experiences contributes to a peace of mind that I thought I would never have, much like the life I was, for so long, sure I would never be living. Part of my purpose in joining this site is to find others to share experiences and strategies for building a new life, so if you have any insights, advice, and even constructive criticism, or if you come across anyone who might, then , please do send it or them my way. Thanks, again, Troy

Hey Troy,you've found a new friend in me even if I am thousands of miles away and it's a virtual friendship,we can support each other's journey if you'd like?

I was diagnosed in December 2015 with what they call "advanced HIV", I'd had it for many years and although deep down often wondered,I never got checked until I ended up in hospital after taking a very large overdose as my life seemed worthless and I just wanted to die.

For whatever reason after that December day of taking 80 sleeping pills I didn't die,now I'm not exactly sure why I am still here but someone must have been watching over me or maybe it just wasn't my time,anyway when In hospital for several weeks due to the damage I had done to myself,a very camp male nurse seemed to take a shine to me and said "why don't we do some tests for your sexual health",at that point I had lost the will to live anyway so just went along with it in the hope that if everything came back clear then maybe it might be the catalyst to kick start me into getting the help I needed to sort my crazy head out......but a week later I was advised ...yes you have got HIV..my world collapsed even further.....a long road to getting where I am right now..

So I suppose that my journey has not at all been as long as yours but in this past 6 months I have had some much needed support from a psychologist,a counsellor and family and a few decent friends.i am learning now that the secret is certainly to nurture your inner purity,and what I mean by that is basically start being kind to yourself,really stopping yourself when you get those niggling negative thoughts and behaviours and decide to focus back to that original peacefulness in yourself.

Your body must be pretty strong to have gone all of those years without treatment and that speak volumes in terms of how physically your body has coped with the virus in particular,thank god you are now on meds and hopefully if not already aiming towards being undetectable.

Things really do happen for a reason I believe and maybe at this point in time you have begun a process of real change and that's a good step.

We all have the ability to change anything if we want to,our thoughts are an excellent example of this,we choose the thoughts we have,so we can put a little work in to changing those thought patterns whenever we desire,yes that may sound simple and to begin with its often a constant effort to rid our old thought patterns and develop new ones but it's very possible,I am doing it daily and learning different ways to deal with things all of the time.some days I slip back into old Neil but then I don't beat myself up over it,I remind myself how far I have come and re focus on myself again,it's never selfish to make yourself the absolute number one priority and within doing this it will in time enable you to have better quality genuine friendships,relationships with others as what we project we attract.

I feel I could chat to you for ages,I am by no means fully functional and fit but I have come through so far and I intend to keep on keeping on.

Much love and hugs


Wow, you are an inspiration! You write so honestly, it is an absolute pleasure to read. In your words I can see your struggle and your triumphs. keep going strong man, you have a lot to offer to people and others can learn a lot from you, thank you!!!!!!!!!!!!!!!!!!!!!

with much love from the uk,

yvette xxxxxxx

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