positive, brave and role models

[zeb]

Part of our condition is the mental issue. As far as i speak for myself: I live with a secret! If my environment would know i probably wouldn't be able to earn an income, i would have custody issues with my ex an my parents (both 70) would collapse... Why? Stigma!

But I really admire the folks who are so brave that they have disclosed:

Magic Johnson: very married, very big, very succesfull, very entrepeneur;
Chris Smith: very working, very politician, very headed towards the future;
Regan Hoffman: very feminine, very high class, very caucasian;
Greg Louganis: very much gold medals;

Besides the fact that they fight stigma, they also give me the power and hope to go on!

Tell me. Who are for you the folks who help you to get through!
Zeb

[Miss Philicia]

"very caucasian"?

[zeb]

Philly yes. Nowadays you hear often that african americans are infected more and more. But all kind of folks get poz. men, women, coloured, caucasian, and so on

[Moffie65]

ALL of my role models live and communicate right here on AIDSmeds.com.

Lis, who in her struggles with this disease, has run her household, raised two wonderful kids, and continues to fight on.
Alan, who has been living with this disease almost as long as I have.
Jonathan, who continues his fight to keep the virus from decimating his life.
Joe Killfoile, and Stephen, who have proven that HIV cannot ruin a wonderful marriage.
Teresa, who is not HIV positive, but is a 24/7 caregiver for her hubby, who is also struggling daily to live and thrive.
Gaz, who is also struggling daily.
Herman, who has been living with this virus for 20 years, has formed, grown and sold a business that nearly killed him, yet he goes on.

Unfortunately my list doesn't even do justice to the people who I admire and who are living and triving with HIV.  Also, those who have not been able to thrive, yet keep on keeping on.  Those are my heros and my role models.  Famous people, have thier own lives and just because they live in the spotlight of publicity, makes them no better or worse than those I have mentioned here, and those I fail to mention due to my own HIV brain fog.

Naming famous people does nothing but name them, and patterning my life after someone who obviously lacks nothing in resources, ie Magic Johnson, does nothing for me.  I respect the commoners here on this board far more.

Love,

[woodshere]

Naming famous people does nothing but name them, and patterning my life after someone who obviously lacks nothing in resources, ie Magic Johnson, does nothing for me.  I respect the commoners here on this board far more.
Love,

Well said.  Having famous people say they are positive or gay or whatever gets 15 mins of fame, but has little lasting impact in making a difference.  I admire those  everyday people who live openly with HIV, not screaming or wearing an "I'M HIV+" t-shirt, but simply living their lives showing others what means to live with HIV.

Part of our condition is the mental issue.

I take excepiton to this.  For some of us we are dealing with being HIV+ and it has no effect on our mental condition.  So unless and until my HIV physically effects my brain, I am in good shape.

Woods

[Central79]

Part of our condition is the mental issue.

I think he means the psychological aspects Woods. And he's right. I'm sat here, no meds, decent immune system last time I looked and no prospect of meds in the immediate future. But I'm struggling with a depression that won't quit since I was diagnosed, poor concentration and some self-destructive behaviours I can't seem to shake.

So looking at people around, on here, and "out there", whether they're famous or not helps me a lot. Listening to the experiences of people who have had it 25 years longer than me, when the care was worse or non-existent, helps so much.

M.

[zeb]

Matt,

that's what i mean!

And yes, all the folks here are heroes.
But the people i mentioned do - according to my opinion - contribute by the fact that they are celebs.
I mean i guess there are also celebs out there who are poz and don't disclose.

zeb

[woodshere]

I think he means the psychological aspects Woods. And he's right. I'm sat here, no meds, decent immune system last time I looked and no prospect of meds in the immediate future. But I'm struggling with a depression that won't quit since I was diagnosed, poor concentration and some self-destructive behaviours I can't seem to shake.

Yeah I knew what he meant.  I am just saying there are some that don't have a mental issue with being HIV+.  Sure I get depressed not only over being HIV+, but also over the hatred I have for my job, the lack of a partner, the 3 major medical problems my family members had last year, etc etc.  But to say, "Part of our condition is the mental issue" includes all of us having a mental condition due to HIV.
And that is simply not true.  I think it is necessary to show others that you can get over your depression and constant thinking of death and live a productive and happy life as long as is possible.

Woods

[Moffie65]

"But the people i mentioned do - according to my opinion - contribute by the fact that they are celebs."

Yes Zeb,

I do however stand behind my post, as those and many more here are completely out of the HIV closet, burned the damn thing to ashes, and are living totally open and public lives and making a real difference in their own communities where they live.  Some here are really deeply involved in Studies to find out why their bug isn't killing them, and they dedicate loads of time and money on their own to do this; meanwhile, being totally public in the process.

I myself, write a monthly column in my local hometown paper that is owned by a Mormon family, and they invited me to donate 650 to 700 words once a month, and my column is called "Living with HIV/AIDS".  Also I have been very out about my HIV since for most of the time that I have been infected.  

You just might be surprised just how many companies out there will not fire you for being HIV+, as it is very much against the law, and some lawsuits have set the bar really high for loosing, so few are willing to tred down that pathway.  My old employer, Eastman Kodak, was sued in 1982 for 7 million dollars for firing a man in Los Angeles.  He thankfully lived long enough to see the money, but by the time I was infected in 1983, Kodak had a really supportive policy in place that even covered counseling for my male partner.

I have no idea what your life is like, but I do know you have a huge amount of stress and anxiety about any sort of disclosure, but from the people here, the celebs that bring you strength and all the successful people who are HIV+; most have one thing in common and that is being out of the closet.  You must remember, you are going to have this bug for the rest of your natural or unnatural life, so it might be a good idea to start arranging your life so that these stresses are dealt with and put behind you.  Remember, "they" can't kill you, just make you miserable.  As you move on in your infection time, make every attempt to question everything in your life, and if any of it doesn't contribute to having and living with a healthy and open outlook on life; then start a plan to dispose of that which brings you pain.  I am really serious here Zeb, you will kill yourself with worry and stress as it will totally make mush out of your imune system.  Please don't go there, come around to the more positive outlook in life and rid yourself of all these worries and negative producing feelings.

Love,

[Central79]

Hey

Tim - thanks for this post. I find it very helpful, like your blog. And thanks also to Woods for the PM.

I definately draw more strength from the people on here than the few famous people I hear about. I remember a lovely nurse I used to work who was incredibly fat, but had the most amazing sense of humour: she looked at a copy of my paper once which had Madonna on the front and said "she doesn't look as good as me.... but then of course, she doesn't have my money". 

The everyday struggles of normal people are more inspiring that the multi-millionaire being treated by Dr David Ho. The people like SASA39, who do their best in countries where the healthcare is just plain bad. Because I can never imagine myself being a Magic Johnson, but I can imagine myself bearing up under this disease and one day handling whatever it throws at me with the optimism of Woods, the stubborness (said with love!) of Tim and the dignity of Jonathan.

I think that's all that was meant - the additional strain of living with a long-term condition. Not that you suffer from clinical depression or anything else by virtue of being positive. I couldn't agree more about the hidden stresses of hiding HIV - I look forward to being able to be up front and open about it, as an HIV physician and somebody who can contribute. I really want to tell my family, but I don't know how - and I feel that they'd rather not know. The distance this is putting between us is a strain, hurts and cannot be good for me. With your support I'm sure both I and Zeb will get there.

Much love, Matt.

PS - I believe HIV will be cured in my lifetime!

[zeb]

tim, woods,

you both are right. but as far as i know myself: it takes time...

I realize that live is what we need to think of instead of death. and yes, i read the forums here and i never saw magic johnson or greg louganis contribute. So im gratefull to the people here, very in fact.

Getting rid of pessimism and depression is important! And woods, yes i can only speak for myself regarding the mental thing.

Zeb

[Esquare]

Celebrities that are open with their status certainly give me inspiration, the list you gave is a a good one zeb. Has Decker hit celebrity status yet with the book and all? He is an inspiration for sure. Another pseudo-celebrity I follow is Andrew Sullivan. Although I disagree with him a lot I do enjoy his blog and I like the outlook that he has on life and the drugs that help keep him and us ticking. Most of my leaning on for positive energy does come from the wonderful people on this site that have befriended me. Moffie listed some of those wonderful people. Zeb, I'm much like you in that I live with this as a total secret. My wife and I have done well as a team to meet the challenges that we face with me being positive so far but on some days its harder than others. I know as well that if I went open with my disease that things would change in a negative way for mine and my wife's life in this southern town. One day in the future I may tell my mother but I am still unsure. If you ever need to chat about whatever, feel free to pm me.

[sweetasmeli]

Tell me. Who are for you the folks who help you to get through!

Primarily, my family, friends and cats.

I also admire, respect and am often inspired by anyone who lives their life positively and without hurting others, especially in the face of adversity.

I'm also quite proud of myself and my role in my life.

Melia
(whose life is abundant with unsung heroes)

[mjmel]

...
Tell me. Who are for you the folks who help you to get through!
Zeb

Disclosed to my immediate family in the early years of diagnosis (1989). That helped tremendously with the isolation factor. Since 1994, my partner, Jeff & family members. Oh, yeah, can't forget to honor my doc. His level of knowledge, his personality and demeanor have made it an easier experience. These past 17 years have been the easy ones. I didn't know it back then but it ended up being trouble free (just a glitch now and again).

For you, Zeb, you deal with pressures that I would not encounter in my life experience. The kids. The very aged parents. The stigma -- well, it exist everywhere, my friend. Do not fool yourself on that one. I did fear for my job at one point and had to never say a word about my status to anyone else but immediate family.
I would like to point out something I have noticed in the last few weeks. Your postings are getting more and more positive in tone and content. This board has been a help to you which is fantastic in itself, I think.

xxx,
Mike

P.S. I forgot to comment on the celebreties. When they disclose it helps us out as it chips away at societys' close-minded attitudes about HIV and AIDS. Apart from that blanket benefit of their disclosure I do not consider them to be HEROS. Before those people disclose their status they weight their options very carefully and know that their immediate support system/factors will not change much if the disclosure is not favorably accepted. Because they are celebs nobody seems to have a big impact on the style of life to which they have grown accustomed. They help much, don't get me wrong on this.

HERO status EQUALS RYAN WHITE and those like HARVEY MILK (who was murdered and didn't die of AIDS).

[zeb]

Mike,

yes these forums help me a lot! absolutely! you can't imagine the pressure i feel doing this all by myself and the forum. I also noticed that the lifespan issue becomes less important to me.
Of course a want a long and healthy life! But now the stigma really hits and hurts me. And still anger comes up. what a stupid ass i've been... and, i'd kill the bitch who gave me this knowingly she was + (not that i would, but it feels like that. It wouldn't make any difference now).

I feel now that i'm not the guy i used to be, when the sun shines i see the shadows. I think it needs time. and i hope i get through this and that i won't slide into a depression.

thanks for your reply

Zeb

[Joe K]

There are far too many people that I admire to even try listing them.  Many of them reside in these forums and for most of us our struggle with HIV is our struggle.  It's great that famous people help to raise awareness about HIV, but how often does that translate into something meaningful?  Rarely I suspect, because real change in HIV services starts right in your own backyard.

No famous person cares that the eligibility process in my county is one of the most mean and dehumanizing every conceived, but I do.  Even without their resources, we can all affect change locally.  That is why comparing lives with HIV, whether rich or poor, never reveals anything, because I have been around big money and most of those people have more problems than most of us of more modest means.

I suggest you look to those people who inspire you, especially those who demand that you exceed even your own expectations.  Inspiration can take many forms and they all seem to be somewhat equal.  Inspiration is what drives our quest to think of what might be... which then translates into our dreams and hope and that is what fuels your soul.

[bear60]

I agree................celebrities are just that: celebrities.  They may lend their names to good causes....LIZ TAYLOR to HIV AND AIDS research for example.
But the real heros are those out there in the trenches ......battling their ASO's or the ADAP problems.