Confessions of a Long Term Survivor

[Moffie65]

After having been given my first time out on this site, I find myself questioning the efficacy of my contributions here.

Many of my posts have been accounts of things that I have learned to do from attending HIV Conferences, countless HIV Classes and other learning experiences to help us co-exist with a virus in our bodies that will destroy any semblance of an immune system.  My tales of washing food or drinking filtered water were not of my invention, but learned from years of study, and years of learning from those who have far better qualifications than I. 

Just this last week, I was accused of causing the near death of a person on this site, due to my recommendation for them NOT to take medications.  I have no idea where that came from, and if it is in fact true, then it is time for me to completely halt any dialogue here.  I have in fact told people that taking medications is a choice, and for anyone to take these medications just because someone else says they have to is not for me, and I would never tell anyone that they shouldn’t take these toxic meds.  That for sure, is a choice, and one that nobody should mess with.

One of the things that I have always had problems with is being questioned for things which I have proven by my own experience and that of others of my peers, which are in fact true and correct.  Yet on many occasions, I have been brought to task as someone who is off center, or at the very least, lying.  For this, I was told by a non-HIV+ moderator to “grow a thicker skin”.  Hell, this skin that has stood face to face with lions, and chased elephants off property, faced up to leopards, and in fact stood at 19,000 feet on the peak of Kilimanjaro; is not thick enough for an “HIV/AIDS Support Website”?!?!?!?!?!?  Sorry, my skin is thick enough for all those natural things; I see no need to submit myself to being verbally abused by people who don’t even know me.

I know I have been of some help to some people here, and I will answer most PMs, and do so in a very personal and friendly way, but to be called out as someone who advocates not taking HAART, is beyond the pall, and I will not submit myself to this kind of lie, nor will I continue to contribute guidelines that have worked for generations of HIV+ people, just because someone wants to eat fecal matter, or dirt from the garden.  That is a choice that would not serve my immune system well, nor would I advocate eating nasty food for anyone.

It has been a wonderful three years here at AIDSmeds.com, and I have come to know many people here, who are genuinely wonderful and enriching.  For now though, I will curb my activity here, as I am not well suited to deal with the constant confrontation of users of the internet and the apparent lack of respect for experience.  Lately, I have seen commentaries from many members mocking good bye threads, and questions of why people make these threads, followed by a chorus of posters agreeing with them and mocking the content of a thread from someone who has obviously come to the end of their participation here.  I care not what people think of this post, nor will I enter the conversation if it ends up being one more “let’s rake this poor person over the coals for leaving the site” thread.  After spending countless hours between this and the old version of the forums, I now bring my work here to a close and will concentrate on building my support from other sources.  I just don’t fit into a picture of “HIV is no big deal, take your meds and live forever”, simply because there is absolutely no proof that this scenario is both true or will in fact come to pass.  Obviously if I cannot afford HIV medications today, I will not be able to afford them in 10 years, but who will continue to pay for them?  Who will advocate for those who have accepted the mantra that HIV is now a manageable chronic illness, yet is totally reliant on a society that is not interested in paying more taxes to support a pandemic that most of the country is ignoring?  I have no answer to those questions, so I won’t even try to answer.

Finally, this post is not written from a place of anger, because anger is usually not productive, but has been written during the time out that inspired it.  Frustration is possibly a part of the cause here, but not at all anger.  I just don’t fit into this new medium that is driven by societal norms that I am not aware of, nor particularly want to engage in.  I choose to live in a remote and rural area, just because city life is not something I choose to be a part of, but it seems to this observer that most of what occurs on the internet is driven by attitudes that are more prevalent in Cities such as New York and London.  I cannot adjust to those customs, because I don’t want to.  I prefer living in a neighborhood where I know all my neighbors, and not one of self cloistering.

Thanks for the good three years, but it is now time for me to exit.  Please don’t ask me to stay, because if the owners and moderators of this site don’t understand me after three years, I am in fact not capable of fitting into the picture of what they want for this place, which is OK.  It is not my prerogative to determine who is fit for this support site and who is not, but I am obviously not.

Peace Out.

[Bucko]

Daddy Tim-

Whether or not anyone else chooses to admit it, I know that yours is the face that most if not all of us will eventually see in the mirror. If this terrifies them now, eventually they'll find themselves there regardless. I just hope they do it with your grace and compassion.

This is not good-bye.

Brent
(Who knows that his invitation has not been forgotten and is always open-ended)

[DanielMark]

Tim,

I wasn't aware that you were given a time out, but I'm sorry you have decided to go.

Do take good care and I hope you find the kind of support you're looking for, wherever it may be.

Daniel

[leatherman]

Sorry to hear that things have gone so wrong for you here lately, Moffie. I've been reading your posts, here in this version and the old one, and have always thought your posts were quite truthful and enlightening. You know I wrote you not long ago because I was surprised at some of the flack you were receiving. I sure thought you were speaking the truth about living with HIV. Why did I think that? Because the experiences you have written about are so very similar to things that I have gone through myself.

Take care and stay well!

[water duck]

Dear Tim,

We are always someone's fool !!

Saying "goodbye" is not chic anymore, just CIAO -- short and chic !!

We still need your wisdom time and again !!

Be well, my friend .

Wd

PS: how come you have time for this post , when you should be spending time with Hermie ??

[Matty the Damned]

Daddy Tim,

Your contributions here have always been received gratefully by Those of Us Who Matter. The others are not worthy of your consideration. You are much loved and greatly respected.

Your devoted boy,

Matty the Damned

[milker]

Moffie,

there will be disagreements from time to time, don't take them personally. I hope there is no disjunct between our LTS friends and the newbies. Certainly, the experiences are different, and may not be well understood by both parties. This is why we have discussions on here, learning from you, reading your posts and reflect, apply them to our situation, this is what we do. Yet, sometimes, we cannot relate, or we cannot understand, or we simply disagree. A friendly exchange sometimes heats up, it's normal, and it's good for the heart

In any case, I know that many of us respect you.

Milker.

[BT65]

Hey Tim:
    You and your input will be missed.  Take care of yourself!

[Joe K]

Sigh.

Dearest Tim,

Our quests lie elsewhere as staying here is akin to tilting at windmills.  I never knew that character and experience had expiration dates.  Seems we might be beyond our "best used by" date. 

As I said, our quests lie elsewhere.

Love to you, dear friend.

[Teresa]

Tim,

I'm sad to read that the few people that disagree with you, make you feel like your contributions aren't needed at these forums anymore. If the people that disagree with you make you feel like that it is probally best (for your own piece of mind and health) that you do take a brake from these forums. I hope it will not be a permanent brake. I will miss you and your words.

Much Love
Teresa

[purpledragonfly]

Tim,
  I do not want to see you leave. You and some others on here are the reason i came back. We need yours and others wisdom. I have been reading what has been said and it really upsets me that some do not have respect for ones that have paved so to speak for them. Us LTS have gone thru what they have not, and if they don't want to listen then that is there fault. Its like haveing teenagers in the house, no matter what you say they disagree and will argue with you till you are blue in the face. I will miss you so much, please keep in touch. You are like a very loving uncle and i love you.

Take care Uncle Tim

Love Wendy

[milker]

I am very sad when I see Long Term Survivors think that newbies are like teenagers. You cannot expect people that are in their 20s or 30s to know what it's like to see the last survivors of StoneWall, to know what it is to see your friends go into oblivion and doctors throwing the towel, to understand the total freaking out that it was to know that you would die in 10 years, to be alone at a hospital because you weigh 80lbs and everybody is afraid to even touch you, to pray for this new drug to save your life, to see the government say that you're gay and you deserve what you got.

People, some do not want to hear those stories, some will listen to you. It is 2007, it is totally different from 1983 or 1985 or even 1995. We're not having the same view on this. I'm not thinking about dying of AIDS. I may, I may not. I am lucky that thanks to you and your battles, I have medication that will keep me alive with few side effects. It's your battles that made it that simple, compared to what you had to go through.

The "You cannot understand" answer is not an answer. Educate those who want to listen. Don't expect more than compassion. Someone that has not been there can only learn and be compassionate, but will never have your experience.

I truly hope that we're not seeing a separation between LTS and newbies. I really, really hope this is not going there. We need you, and you need us.

Milker.

[Central79]

Dear Tim

I'm really sorry that you've made this decision. I think your contribution here is unique, and valuable. You've certainly helped me since I've been a member, and I will miss you.

I regret that you received your time out for your response in a thread where I participated - I think you may have misunderstood what I was trying to say when you responded, and I wish now that I had PM'd you about it to clarify.

I hope that you will still feel able to maintain your blog? And maybe work your way back around to coming back when you feel comfortable.

All the best,

Matt.

[Basquo]

Wow.  This sounds final. And I’m sad for that.

I just want to celebrate three interactions we’ve had:

1) After one of my firsts posts, in the Autumn of 2005, you were the first person ever to send me a PM. I was so honored, and so grateful, that someone responded to me personally.  I’d been haunting the Forums for a couple of years, but thought I didn’t belong since I wasn’t taking any “aidsmeds.” I’m still not. I’m a medical freak. But I experienced the whole thing, regardless, from the time I read about “gay cancer” in Rolling Stone in high school, to watching so many friends die in the 80’s and early-to-mid 90’s, to being diagnosed myself in 2000.

2)  In Montreal last summer, you parked your scooter in a corner of a dance club, and made your way to the garden rooftop to join a group for drinks.  Six flights I’d be lucky to make with my knees on any given day this year. When I asked you how you got there, you said “One step at a time.”  How true!  How the fuck else would you have made it? Again, I was honored, by your frank response.  

3) Also in Montreal, you invited me to join you for chocolate and other treats in your room.  I accepted, then rescinded, probably to go drink or get a tattoo or some other such triviality.  I regret that.  From your spirit, I thought there’d be other opportunities.

I assumed you’d be around for ever. I fucked up in taking you for granted. I wish you the best for the rest of your time in this realm. I hope I’ve been genuine enough to meet you again in the next.

Love, and Peace,
Creighton


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[xyahka]

I actually don't understand why someone should leave this site... i though we were here to give us support... not to fight against us.

I would not like Tim to leave, nor Bailey... we are all valuable people and should be more tolerant to others. I am actually getting sick of all the fights around here.... i think we all should take this site to a different level, where support really happens.

And if someone does not like other's opinions, then don't read them... but never ever think you have the right to stop someone to express their thoughs, nor the right to spread "gossips" about someone you didn't hear IN PERSON (i though we were mature people). I have to admit i have hardly read any of Tim's posts... but he is one of the people that makes this place special, like each one of you... this is not just an internet site.. this is a nice group of people meeting online... and i liked it like that when i joined. Can we get together?.

Tim... don't leave, you and all the LTS have a place here with us.

Juan Carlos (Who would like to see this site gainning more members not loosing them)

[Dragonette]

I was just going to PM you & ask if you are still on the time out.
I am still horribly sick (got better, but it came back with a vengence).

Moffie, internet forums have their own dynamics, there are very valuable but not like real life, there is a certain kind of depth that is hard to reach, there are ping pong discussions. I am not disputing you just sayin'. I would hate to see you leave...

Edited to add that I have taken to washing oranges before peeling them after that post of yours!
And speaking of that post, I guess I have to strike a balance between feeling free and living my life and not a "bug life" and taking precautions that pay off in the long run.

This is like a family, you have the older more expereienced members, the adults, the young adults, some teenage rebels, some children and helpless babies. You have the arguments, sometimes the meaness and pettinesss, and a lot of appreciation and compassion. Everything just becomes more "real" when you write it down, things that would be thought, not said, in real life, are more easily expressed. Hence the addictive nature of interent forums (not just this one, I have been active on non-HIV forums as well). I guess part of the dynamic is someone storming out and slamming the door [not that it is without reason]. I hope you stay for my own selfish reasons, I need your perspective, I value your opinion, I find you comforting and reassuring. I would be definately sad if you leave! And you know what sadness can do when one is sick with a low T-cell count, not that I am emotionally blackmailing or anything .........

[sweetasmeli]

Tim, my friend
You know my thoughts on this. And I look forward to the day I can hug you in person.

Our quests lie elsewhere as staying here is akin to tilting at windmills.  I never knew that character and experience had expiration dates.  Seems we might be beyond our "best used by" date. 

Joe, as long as you, Tim, Jonathan and others who have felt inclined to cease participation on the forums continue to share your wisdom, thoughts and truth about this disease - which is all you have ever done - you will never be past your 'best used by' date with me and many others here.

Tim, as you know, I have missed your presence and input here in the past when you have taken breaks and I will miss it again. As I have missed Jonathan's this past month or so. And Joe, as I would miss yours, if you decide to step back too.

But if anyone really feels their 'quests lie elsewhere' or that leaving the site is in their best interest, surely that is their choice and their choice alone. Who is anyone here to question that?

Always with admiration and respect
Melia

PS for Tim: By the way, if this is true:

in Montreal, you invited me to join you for chocolate and other treats in your room.

Then WOOHOO!!! ARIZONA HERE I COME BABY!!!

[joemutt]

I am sorry to see you go, but I also know you are true to your word,
so good bye, good luck and good health.

[cjc]

Moffie, I am sorry to see you go. I am sorry that we will be losing a source of wisdom and experience that you offer. Please take good care of yourself and maybe come back soon.   Love, Cristy

[Peter6836]

Moffie,
This is very depressing news. What are we without our mentors. I will miss your wisdom, your honesty and your tenacity. I must say I have great respect for you. You will be greatly missed in these forums. I have always known that I could rely on your honesty.
Respectfully Peter

[J.R.E.]

Dear Tim,

It saddens me to read your post, but I believe and understand, where you are coming from. I will personally miss your postings ! As Joemutt had stated, you are true to your word !! You have always been one of the most honest, and straight forward posters on this site.

I would like to private message you my Email address, I would like to have contact with you ! Who knows, perhaps somewhere down the road, we can get together someday. I had given you my email some time ago, but since then that address has changed.

I also urge you to reread this part of "dragonette"s post :

This is like a family, you have the older more expereienced members, the adults, the young adults, some teenage rebels, some children and helpless babies. You have the arguments, sometimes the meaness and pettinesss, and a lot of appreciation and compassion. Everything just becomes more "real" when you write it down, things that would be thought, not said, in real life, are more easily expressed. Hence the addictive nature of interent forums (not just this one, I have been active on non-HIV forums as well). I guess part of the dynamic is someone storming out and slamming the door [not that it is without reason]. I hope you stay for my own selfish reasons, I need your perspective, I value your opinion, I find you comforting and reassuring. I would be definately sad if you leave! And you know what sadness can do when one is sick with a low T-cell count, not that I am emotionally blackmailing or anything .........

Take care of yourself Tim-------------Ray

[sdcabincrew74]

Your wit and down-to-earth advice will certainly be missed.  I know I will also miss your "frankness" about many topics.  Unfortunately it appears as though this is more of a social networking, feel good place rather than a place for honest advice.  I wish you luck and hope you are going to San Fran as YOU are one of the few reasons I am going.....take care!

SD

[OzPaul]

Dear Tim

Thank you for you generosity of spirit these many years. You've shared your experience, past, present and what might be. Many have learned from your insights, wisdom and humor, myself among them. You have been a role model of strength, courage and determination and you WILL be missed. Should you reconsider, you will be welcomed back by many here at our global family.

Wishing you all the best

Paul

[bear60]

Sorry, I dont accept your resignation.  You will have to  stay here and do the best you can....as always.... you do.

[Life]

Tim we have had talks about this in the past....  You were the first person to welcome me here and the first one to put things into perspective for me.   You take the time, you care, and for me, thats all that matters..  Do what you have to do, but I will NEVER say goodbye.... ABSOLUTELY NEVER!

In Love and Peace,


Eric

[Carolann]

Hi Moffie,

I hope that you are feeling better about the forums. As you can see your are well liked here, and even many of those who may not agree with you respect your contributions. I really don\'t think that there is that much of a divide between the newly infected and the long term survivors (like milker suggests). I think that there is just an obious difference of experience.  How about we all respect each other\'s right to define their reality, which we know is fluid. I look forward to seeing you in SF, if you are planning to attend. I will be insulted if you don\'t invite me to your room for chocolates and other treats. Can at least ride bitch on your scooter?

Hugs,

Carolann

[David_CA]

Tim,

I hope this is just a vacation, a break form the forums rather than a goodbye.  I've enjoyed our interaction and reading your posts over the 15+ months I've been here.  In fact, you were one of the first to welcome me when I joined, and I really enjoyed meeting you in Montreal.

Having said that, I think many of us would do good to say "in my experience..." or "from what I've seen..." instead of speaking in absolutes.  From what I've seen, there don't appear to be a whole lot of things that are totally predictable with HIV.  Some drink well water without filtering, and have for years, and haven't had issues.  Some don't wash their fruit at all and have never had a problem.  Some take all these steps, but they still end up with some nasty OI or other issue.

My observation is that many aren't necessarily disagreeing with what one says, but how one says it.  I can't tell a smoker to quit or else they'll get lung cancer.  Sure, there's a greater likelihood of lung cancer, but who can say that they will develop it from smoking?  I think that we all benefit from most everybody's experiences in dealing with HIV, but, as many have said, it's a 'personal' virus and, we won't all experience what others have.  I don't think too many of us totally refute what the 'old timers' say, but some seem to object to the fact that it's stated as an absolute instead of a suggestion. 

David

[getbusyliving]

Tim:

Although we haven't met or even corresponded here I have always looked forwartd to your posts and your advice, and your HIV wisdom.  Yes the world is rapidly changing and that is as good as it is bad.  However, the more things change the mnore they stay the same, and one thing that has stayed, and wil always stay the same is this:  "With experience comes Wisdom."  Of course that statement needs this qualification - wisdom only comes to those who pay attention to what experience has to tell them and who listen and learn from the experiences of others.

I am paying attention to my experience and I am listening to the experiences of those with far greater wisdom then I (when it comes to living with HIV), namely Moffie and Killfoile.  I have always considered you two as sort of mentors when it comes to living with "this." 

I too have not been writing here that much because I have noticed a big change from the very helpful, supportive site when I first came here in 2004, and the site as it is today.  As always the difference is the people.  So sorry to see some of the best go.  But also, as always, the culture of a society, whether it be a government, a company, a family, or a website comes from the top.  So sorry to see those changes here  they have made a difference.

Staying Positive,
Getbusyliving   

[pozniceguy]

Tim  I am sorry to hear that you feel so unwelcome...as several have already pointed out it may be that a few people see your valuable inputs as threatening their beliefs/ values...so be it  that happens all the time in this country...there are many persons who decide to live the life they have in decidedly different ways....many of which I would not choose for myself...and I am sure there are many you would not choose.....your post are always informative...I try to not judge others opinions  but do occasionally challenge the "facts"   some people cannot take a challenge with dignity and lash out....that is their issue to resolve...and they need to resolve it if  they ever hope to gain the sort of experiences that you and others have already ...  I consider myself a LTS   probably infected in early 80"s....have seen many of the problems /issues you report..I don't always share my opinions but that is a personal choice......I hope you will at least reconsider and jump in when the issues are too good to pass on....
Nick

[NycJoe]

David I second everything you said above, couldnt have stated it better myself...Joe

[red_Dragon888]

Well if you gotta go, you gotta go, but you will, and I hope I speak for everyone, that you will be welcome back.  I am new to this site since January 2007, and I know anger is not helpful to the human condition, so go, take care of yourself and I hope, that when you feel up to it, come back because you will be missed.

[Iggy]

I second Bear's rejection of your letter of resignation.

Sorry to inform you of this - but you have an obligation here - one that you not only accept but dare I say thrive on...Tim I know you - no - not in the sense of knowing you outside of this board - but in the sense of knowing what makes you tick....and what makes you tick is a sense of purpose - even when that purpose is exhausting.

Tim have you stopped to consider for even a moment me in all this?  Now that is not meant to come across as as egotistical as it seems....because when I say me - I don't me mean so much as what I represent.

Do you remember me Tim?

DO you remember my first posts were very much in tune with those that angered you in this last thread?

DO you even remember that many people thought I was a certain poster's sock puppet?

That is how angry I was with you when I first joined the board....and that is how much I fought your messages ....

Tim - Do you remember?

Now Tim - I dare you to look at me now.  I have argued your point when others have called me a dooms sayer or someone wallowing in moroseness....I too have faced those who have attacked me as a Nazi simply because I dare say that this is serious ...and I beg you - don't leave me alone in this.

I'm sorry you are tired Tim....as I know my own fight with you over a year ago played a part in that....but I'm afraid you are not allowed the luxury of leaving us....yes I realized that is completely fucking selfish for me to say - but to those who would question that ...I say - go eat your own bullshit of moral judgements....

Tim, I am a reflection of you - a reflection you have willed - a reflection you have hoped for...a reflection you have worked for ....you walking away from it represents a willingness to see all you care about mean nothing.

I don't believe that is the legacy you wish to leave.

[sweetasmeli]

Bloody hell Iggy. I take back the part of my original post that said who is anyone here to question Tim's choice. You and others have made such bloody good points here, how could I not?

I like it when people stop me in my tracks and make me reconsider my stance, even if it is only by a matter of degrees. I would never be too proud to do that. I'm also not a kiss ass, only saying this to be nice (for anyone who may be thinking that).

See Tim. Look how much you are admired. And respected. And relevant. I told you so already though.

You already know how I feel about you and your presence and input here.

Now reread the other 30 responses here so far. Not a one of them is welcoming your decision. From Brent's 'not goodbye', through Joe's 'sigh' to Iggy's plea. Unlike others here, I would never ask you to stay. But I will ask you to reread all the posts here and ask yourself, totally honestly, what they really mean to you.

With love
Melia x

[SASA39]

Don`t  go - we need you- it is simple as that !

[AlanBama]

Tim,

You may be a 'dinosaur' but you are not extinct YET!   You have much wisdom to offer, and as this thread proves, many willing to drink in that wisdom.

You have helped me on countless occasions, and I always appreciate your honesty and love.

Hugs,

Alan

[aztecan]

Hey Tim,

I second what Alan wrote. I always appreciate your thoughts and you do have much to offer.

HUGS,

Mark

[Lisa]

Damn.    ....just damn. I have apparently been away for too long, and missed way too much. I still need you here old friend. Iggy 'splains it well.

[Jeffreyj]

Crap!

[Queen Tokelove]

I know we have not always seen eye to eye on things but still, I hate to see you leave. And must say that I am shocked that you of all people would get a time out....But if you feel you must move on, I can respect that and will say that you indeed will be missed. I wish you the best.

[Carolann]

So glad you didn't leave us!

P.S.  I really didn't think you were going.

[LatinAlexander]

Me thinks you have walked a path, and even when mine may not be the same, I will always be interested in the stories of your journey, because I will learn from them.

Alex