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How do I keep hope alive?

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--- Quote from: Oscar on June 20, 2006, 01:39:17 PM ---Your right Johnathon my struggles predate HIV. I could give you a list of things that I have had to deal with in my life, but it doesn't serve any purpose now. That was the past & it's gone. Nothing I can do about it now  but go on and live for today & hope tomorrow will be better. I have to make myself believe that.


--- End quote ---

Hi Folks/ Dan,
I'm new to the POZ Forums, but certainly not new to AIDS or some of the pain Dan and may others are going through.  I've been positive for nearly 15 years.  I'm 50 years old and have lost too many dear friends, a partner and 2 Old English Sheepdogs (Max & Daisy) along the way.  Sometimes life fucking sucks!  But I've had good times too.

I quoted Dan's last sentence because it resonated with me.  Most of my personal demons predate my HIV, but knowing that doesn't make it any easier to manage.  If you're already struggling with life's little speed bumps, how the hell do you handle the huge pothole that is AIDS. (My apologies for that horrible metaphor.)

I've been lucky to have had good medical coverage and good treatment and care, but my problem is with 'wanting' to survive.  What's at the other end of survival?  What does it mean to 'beat this disease?'  I've already lost all those precious members of my immediate and extended family, they won't come back.  What is there for me at the other end of this journey?

To paraphrase... "The past is gone; there is nothing I can do about it but live for today and hope tomorrow will be better..."  Better than what?  Better than when I was happy with my partner and our two puppies in our home in the country with a breathtaking view (cue the clouds breaking and the rainbow shining through.).  Better than that?

I had a pretty tough life as the last of 10 kids... not a lot of attention to go around by that point.  I have tried all my life to have hope, but someone or something always manages to pull that stupid rug right out from under my feet.  Oh, I've gotten right up and dusted myself off so many times I could puke.  I'm tired.  But I'm not totally defeated yet, I just need something or someone to poke me in the butt (Relax, not like that!).  I need some real definitions of what it means when someone says, we're gonna beat this disease.  What exactly does that mean?  If the world has not been able to effectively manage the spread or treat the infected in 25 years, what should make me believe that something 'right around the corner' will.  Twenty-five years, that's have my life.  Hope hurts sometimes.

I truly meant to try and stay optimistic here, but we are a product of our lives...

As I mentioned, I've been very lucky, I have great friends who care deeply about me and a terrific family who (now) loves and truly admires who and what I've become.  Many tell me that when they hear my story, I am an inspiration to them.  Well, that's all wonderful for them, but it makes me feel very lonesome and sad, because once again, I am providing for others and no one is providing for me.  Don't get me wrong, I'm very happy I can help people look inward and help them achieve things they only dreamed of doing, like riding their bicycle from San Francisco to Los Angeles, but where is my muse?  Where is my inspiration? Where is the person or persons who will affect me in a life altering way to make me look inward and want to "beat this disease?"

To quote another great man, how do I "keep hope alive"?

Please don't insult me and tell me to 'just do it' or 'ya gotta try, we love you.' Please, I've been around the block a few times... I've seen the dark side of life as well as the light.  But how, how do you hold on to that feeling of strength and energy to keep going, my grip grows weary.  My family and friends don't know what to say.  They try to look me in the eye and hold me and tell me they are there for me, but they don't know what to say or do... they're as lost or scared as I am.



--- Quote from: Rowdy on June 20, 2006, 03:30:08 PM ---But how, how do you hold on to that feeling of strength and energy to keep going, my grip grows weary. 

--- End quote ---

I can only speak for myself, so this isn't "groupspeak" but this is how *I* hold on to feelings of strength and energy to keep going. I think about the progress I've made thus far. I view the progress as blessings. I think about how those who suffered and died when AZT was the only ray of hope, or, worse, when science was stumped completely (no AZT).  Those folks have left this world, but their deaths helped pave a way to even stroger hope and possibly cure. As I sit here typing, I know I have life in me. They once had life in them. Now they don't. One day, I won't either. Same for you. Same for the gas station attendant, the Morgans down the block, cousin Jody and her fiancee Howie in Kansas, Elvis, JFK ....

How do I keep hope alive?

Good question, Rowdy. Wish I had an answer to that.

After 18 years living with HIV in me, I don't live my life in hopes of a cure (tho it would be incredible). Nor do I expect to be around if they ever find one.

I live in the hope that I will continue to grow as a person day by day Ė not harm anyone too badly before I leave this world Ė and that I leave something of value behind me when I go. Basically, I hope to love and be loved. I donít know if I should expect more than that, but I donít.

I try to keep my life and my expectations as basic and simple as possible. To do otherwise only frustrates disappointment in me.


Thanks Daniel,
I'm really not all doom and gloom... it's just that I sometimes get very tired of all the HIV techno-crap and stuff to think about.  HAART, Viread, Reyataz, Valtrex, blah, blah, blah... How will that food affect my stomach?  What happens if I get the runs while in a business meeting... etc.

I'm actually quite happy most of the time and I have had some great times, but it get hard to hold on to those feelings.  I nearly died of PCP in 1996, I had 1 t-cell and my VL was over 500,000, I weighed around 114 lbs and looked awful, but then something happened and the right combination worked and I'm now at 165 lbs (okay a bit overweight for my 5' 7", but hey...), t-cell count is over 200; VL around 385 and generally, I feel okay.  I've ridden my bicycle from SF to LA 3 times in the AIDS/LifeCycle... but even so, even though I see the miracle in myself, I sometimes feel like I can't rally yet one more time.

It gets tiring to face this thing each and every day.  I need some propping up.  I need some reassuring that what I've done and what I'm doing is a good thing... that I'm a good guy.  But it needs to be genuine and sincere and from someone central in my life.

I used to feel that sense of "I'm going to overcome this," but have lost it and can't seem to get it back.

Thanks for your thoughts.

Andy Velez:
Good to hear from you, Rowdy.

And all I can say at this moment is that even when you feel like crap and you think you can't stand another minute of the deluge, disappointments, dreariness, depression, darkness, dumbness and any other d stuff you can throw in, well just keep going anyway.

Because in spite of all of that an more there's something good about being alive. At least that's how I feel.

In dark moments you might try making up a list of 6 things you're grateful for. It really works, but I won't blame you if you feel like throwing a cyber pot at me over that suggestion.


Yes, cheers,


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