Tag Archives: stigma

Words: From Me to You

andreaBY ANDREA MUFARREH

We all remember a time when someone said something that we will never forget. Most of the time, it’s something that didn’t just prick us or shock us, but rather, it’s something that lives within us. It’s like a thorn in our side that makes us feel inadequate and misunderstood. I don’t mean the misunderstood that a teenager feels when their parents won’t extend their curfew. The misunderstood feeling I’m talking about is this yearning to be accepted, understood and loved.

For me, there is a word that invokes this sort of feeling. As someone who converted to Christianity a little over two years ago, and underwent a radical change from an atheist and party girl to someone loves Jesus, the world “religious” gets to me.

There is nothing inherently wrong with the word religious, but I know that much of the time when someone asks me if I’m really religious, they’re actually wondering if I’m ritualistic and dogmatic. These words seem to have all become dirty words in our society.

I am ritualistic, in that I go to church weekly, and pray and read the Bible daily. I am dogmatic, in that I interpret the Bible as the true and living word of God, much like St. Augustine would. But as a Christian, my religion is not my rituals or my dogma. My religion is a relationship with who I believe to be the God of the universe and Savior of mankind.

What words haunt you? The words that haunt you may be the N-word or the F-word. Or maybe the word that haunts you is HIV+, AIDS, whore, or prostitute. We all have words that haunt us.

I think if anything, the lesson I’m learning is that words can be used to hurt people, but more importantly, words can be used to speak life into people. I write speak into because the words we speak have the power to live within another person. This sounds rather idealistic, but whether or not we admit it to ourselves, we all seem to live in a way that presupposes that there is a “perfect” or “ideal” way.

We volunteer at homeless shelters because the world would be better if everyone had a home they could call their own. We work to spread awareness about important issues because it would be better if people knew about them. We vote the way we vote because it would be better if our laws were a certain way.

We all have a certain notion of what a perfect and ideal world looks like and we attempt to live according to those standards. It’s okay that we’re different. It’s okay that we think differently. It’s okay that we live differently. It’s okay that we vote differently. It’s okay that we’re incredibly passionate about different things, even opposing things.

What would it look like if the words we speak into our family, friends and enemies actually built them up into the person they are meant to be? What would it look like if we actually lived to intentionally speak life into others who believe and live completely differently than we do?

The world would be a much better place.

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A Word Like Cure

m louella

BY MICHAEL LOUELLA

First published by defeatHIV

 

From the very beginning, I was warned about a word like cure.

I was preparing to teach a class at Gay City University on the latest scientific developments motivating the thoughts behind and the investigations into potential cures for HIV.

I remember I was excited to have found online the first pics of the mysterious “Berlin Patient’, who stepped out of years of anonymity into a name: Timothy Brown. I remember thinking it was a minor coup to add his name and face to my PowerPoint presentation. Somehow, becoming Timothy Brown made the story of his cure more real.

My friend must have seen all my excitement about this and about the chance to talk about the current research into a cure.He cast me a sideways glance that only a queen worthy of such a title can cast and said with some foreboding:

“Like all other four-letter words, you gotta watch out for a word like cure.”

It’s taken me three years to come to appreciate, if not always follow, his advice.

My friend’s admonishment stumped me.

Was he really advising me not to use a word like cure in a presentation about the very same subject?

Should I take his comments to mean I needed to better define what we mean when we say a word like cure, or what we think when we hear it?

What could be wrong with a word like cure, which to me only sounded so right?

Well, to answer that, google “cure for HIV” and see how long it takes for you to find a page like howtocurehiv.com whose opening salvo reads:

How To Cure HIV – in 3 Days, No Matter What! FREE

(Scientifically proven, trusted and recommended even if you’ve stuggled with HIV for years and your doctors lost all hope!)

Read on to learn about your amazing Free Trial opportunity…

No, we might shake our heads at such foolishness. We might even point to the spelling error ‘stuggled’ as some sort of secondary proof that such claims are nonsense.

Doctor’s Have Proven How To Cure HIV

Click here to Cure HIV now!

The history of HIV is peppered with such claims, and when, such as the ones above, they seek to make money from people living with HIV by peddling lies that prey on hope it is only just to call such actions evil.

Sometimes I look up these sites to remind myself how powerful a word like cure can be. I scan these pages online and I witness how a good word could be used as bait.

They leave me heartbroken, these online peddlers of snake oil cures for HIV.

But these shadows in the history of HIV must be remembered if we are to effectively tell the truth about a word like cure.

It happened again. That four-letter word came up unexpectedly.

In reply to the mention of what I do for work, a guy I had been chatting with online told me that a cure for HIV is ‘just around the corner.’

I replied: “Nope. Exact opposite.”

“Oh, I keep seeing all my friends posting stuff*[1] on Facebook about how it’ll be cured soon.”

“Years and years away, but on the road with scientific basis.”

I boiled down this phrase after the umpteenth time of being online and suddenly confronting the need to do damage control.

Soon after I began talking about an HIV cure with any willing audience, I found the need for answers that would communicate the truth quickly like a text or a tweet or a soundbite.

Of course, I can never leave things to one terse reply, and so found that I just had to write three complete sentences about the media misrepresentations that seem like the adult versions of the childhood games known as Telephone and Whisper Down The Lane.

I also like to lead people to sources to see for themselves the evidence of anything I say, and so even offered to send this guy a few links.

“Eh….I’ll take your word for it.”

And with that, our 7-line long online conversation about HIV—which was exhaustive in comparison to most of my online conversations about HIV—just kind of stopped, ended not with a bang but a few whimpers.

And I sat there staring at my inbox, wondering in the end how much anyone really cares about another four-letter word like cure.

I know I shouldn’t feel this way.

I do know from firsthand experience that some people care an awful lot about a cure for HIV.

Some people get so excited to hear about the scientific basis for investigations into a possible path toward an HIV cure. That these investigations are exploring 8-10 different possibilities is just more icing on an already sweet, moist cake for these folks.

Now, before you think that such conversations are easy, or that complicating emotions don’t arise even among people who are excited about federally funded research into potential cures, let me point out that in such conversations, there is often a soft counterpoint.

Sometimes this thought is shared aloud with me, and I get to concur without needing to say much more than an amen.

More often it remains on their tongue like a silent prayer, afraid to fly up to heaven and stake a claim, knowing how fickle fate can be despite the fervor of our wanting.

It’s with these folks who hope beyond hope and in spite of foolishness that I feel a bond.

They want to see a word like cure made real.

But it is the hush around the words that follow in a soft counterpoint that always break my heart.

In my lifetime.

There are people who are happy to believe a cure for HIV is ‘just around the corner.’

Faulty journalism like the recent story out of Denmark does not make talking about a word like cure with such people any easier.

In fact, if you take people down that rabbit hole which starts with a university’s plug for the cure research going on within its hallowed halls being lifted by an online UK paper known for printing incorrect obituaries that have led even the New York Times astray and which ends in a wonderland where a cure is just around the corner, they tend to become less happy.

In fact, they often become more distrustful, more resentful.

I marvel at the craters such bad information leaves behind in the thoughts of many people.

Do they stop thinking that HIV is a global crisis? Do they stop giving money to HIV agencies or volunteering their time in clinical research?

I wonder what the conspiracy junkies who already believe a cure exists but is being kept from some of us by the federal government make of such faulty news?

Does this immediately strengthen their belief that a cure exists but is being withheld? Or does it secure this myth only after months pass and we still have no cure to point to?

I wonder how such wrong news about a word like cure might soften into pudding the mind of a young gay man who already thinks that he doesn’t need to worry about HIV, that it isn’t a big deal anymore, that people aren’t dying from it, that you can pop your pill once a day and be just fine.

Prevention is barely on the radar of such men, most of whom have a poor grasp of the nature of an epidemic that keeps all of them disproportionately at risk for becoming infected with HIV.

How many ‘just around the corner’ headlines will it take to lay to rest completely whatever prevention strategies might remain in the minds of these men?

And when I consider the fatigue gay men exhibit after 30+ years of shouldering most of the blame and most of the burden for the HIV epidemic, such wrongheaded headlines begin to sound like nails hammered into the lid of a coffin.

We need to begin talking with each other about a word like cure. We need to learn how to unpack all its punches.

As a community begins to form around a cure research group like defeatHIV, we need to remember a word like cure has many lessons, and these lessons will only be learned by talking with each other.

We need our talk to be truthful, honest and real, and we need it to be free enough to reach others wherever they might be at.

We need to deepen our understanding of the science, what has been accomplished, what yet remains for us to do, and just how long it can take science to any of it, let alone all of it.

We need to deepen our respect for our communities heavily affected and infected by HIV, and for the context of people’s lives that might change the way they hear any talk about a cure.

We need to strengthen each other in a commitment to learn as much as we can and share this with our friends and neighbors, figuring out ways to open up our capacity for awe and wonder without losing complexity.

We need to consider the power over the heart a word like cure has, and to take much care not to inflate hopes, but careful as well not to deflate them.

Want to know what was on the very first slide of my very first presentation, the one with Timothy Brown’s name and photo, the one that cause my friend the queen to issue his dire warning?

That slide had one word: CURE

I started off by acknowledging that four-letter word, giving it my voice and breath.

To this day I can think of no better way to begin to talk about a word like cure.

 

We need a cure for HIV.

And that cure for HIV needs us.

That cure for HIV needs you.

So let’s start talking……


[1]
[1]Despite my use of direct quotes, I changed this word to a version more polite, despite the poet in me seeing in his original word an unintentional commentary on the newsworthiness of his friends’ FB posts.

Inspiring Olympians

Help us count down to the 2012 Summer Olympics by posting about Inspiring Olympic athletes on our Facebook Page!

Tommie Smith is an inspiring Olympian whose legacy lives on today. At Until There’s A Cure, we are inspired by individuals who take a stand for a cause they believe in. The Olympics are not only a time for astounding athletic ability but also positive social movement and change. In 1968 when Tommie Smith and John Carlos raised their fists during the national anthem after placing in the 200-meter dash, they created an everlasting symbol of the determination of the human spirit. Tommie Smith inspires us, an athlete who took a stand against injustice and furthered the fight for racial equality during a tumultuous time for America.

What Olympians inspire you?

HIV and Love

Love, how beautiful it is! This is so important for people living with HIV/AIDS…to have someone who loves you for you and can see past the illness, that is if they are negative..I am very blessed that after all these years of being positive and thinking way back ( I WILL NEVER MARRY), I have been blessed with such a loving and caring partner. :) She is a key element in my health, believe it or not! When you are loved and cared for..your heart and soul fills up inside. You are happier and feel complete, all these things make your immune system go up..and it is not only the love of your partner, wife, husband..it comes from anyone that shows you love and cares for you! A friend, your family…even strangers…people just don’t know how important it is to love and be loved for us. My partner, Lisa, would be the first one to say she was part of the ignorance, of course until I came along…

It is not easy to disclose your HIV status, but I guess I have a method to my madness :) if you want to call it that way. Almost all my life I have been with HIV negative partners…only one positive and that was actually my worst  relationship..although we learn from good and bad relationships. My method is to get to know the person first and feel them out…if you see things are getting deep, and I mean spiritually and mentally, you must disclose and give them the opportunity to choose. It is not an easy thing to do..I get so scared! I guess the fear of rejection or having someone you connect to on so many levels and maybe they can’t deal with the situation..which is also very valid. My situation was, WOW! I found my soul mate after all these years..I feel so much for this person..now I have to tell her about me! everything about me! oh my god! what if she rejects me,or stops talking to me…Well, I said to myself, you are a strong woman! Tell her! And make her feel comfortable either way! So I actually disclosed through our chats in the computer lol..I guess easier being rejected in the computer than in person! I have to be honest, I beat around the bush like for an hour!

“Lisa I have something very serious to say about me before we move forward!!” Oh my! I just couldn’t type the words at that moment..

She would reply, “Tell me! I dont care what it is!”

I answered, “Well it something very very serious…” and I was driving her insane! cause I just couldn’t say it ! I was thinking OMG Maria say it and get it over with! But how sad to know we are in love and I might lose her today! so I wrote: I AM HIV POSITIVE .. but of course I did not click send yet! I paused and said ”ok Lisa here it goes!” and I clicked ‘send’..I felt like throwing up..anxious..Everythingggggg..

She paused for a second and said “OK , and?” “So,” I said, “that is my secret..”

She responded, “I don’t care I already love you!” I told her “If you have any questions, I would be more than glad to answer them…” She responded “If I do, I will ask you!”

So I was like, wow! Still felt I might be putting her in the spot! So I said, “You know, if you need time to think or just want to be friends I am ok with that also..” She responded “NO! I love you!” Those were the sweetest words to my ears! All my fears were gone! Finally, my soul mate knew everything about me..it is such a wonderful moment! You feel so free. :)  So we continued to chat for hours and she said jokingly, “My god, I thought you were going to tell me you were a man, or a murderer, or that you had child you gave up..” lol ..so this is part of my story of  Love. :)

It has been 4 years since this event..we are happily married and going strong. :) Recently we both did the My AIDS campaign.

My campaign is “My HIV, My strength.” and Lisa’s is “My partner, My commitment!” How beautiful is that! And by this, she is exposing herself to the stigma, as an HIV-negative person being with a positive person! But guess what! She doesn’t care what people think! She is supportive, compassionate, loving, and I am blessed to be a part of her life! I have told her if me finding a cure meant having to leave you, I would choose living with you because living with you is my happiness…which is ultimately what we as human beings are looking for! Being straight, gay, bi whatever! It doesn’t matter…WE ALL NEED TO LOVE AND BE LOVED :) ! As we both have said from the start… IN IT TILL THE END :)

Lisa Laing, this blog is dedicated to you!

With all my soul

Maria T Mejia

This article was cross-posted from “A Girl Like Me,” a program of The Well Project and TheBody.com.  

MY BEAUTY SALON EXPERIENCE…(IGNORANCE),THE TIME TO EDUCATE CAN HAPPEN WHEN YOU LEAST EXPECT!

So yeah! I was looking forward to a nice relaxing day! Away from everything…just a place where they could pamper me…release some stress. YES! The beauty salon…yay…getting my hair done, my hands and feet done. Just time for little old me to get away from daily life…and of course, my job or mission never has a break.

I was laughing with the owner (my hairdresser) and other clients that were there (hearing their problems, yeah, a little gossip Tee hee…that btw I love), listening to music and feeling good about myself and the outcome of my beauty regimen…and then BAM! Here comes a young lady with a wig…the owner looked at her in shock, and whispered in my ear…’WOW! Maria she used to live with me…’ As I looked at this girl, I noticed when they took her wig off, that her hair was falling off…she was almost bald, her cheeks were sunken in, she was so pale and skinny.

I was like, Hmm, thinking to myself she looks like a meth head (I know I was guilty of judging) so I just continued with what I was doing. Another dresser put a treatment in her hair, made it look a little better and the young lady left. The owner made a comment very out loud to all of us there, clients and people that worked there. ‘She looks like she has AIDS.’ I said, ‘oh wow’ to myself…here we go…She continued, ‘OMG! Ewww what the hell happened to her! Man, I would be so scared to sleep with her or anyone she slept with…she looks so dirty!’

Here I am holding my tongue, but with such a big urge to speak my mind and educate…and remember I was there to pamper myself and RELAX! But that went out the window, of course…whoever knows me, knows I can’t hold my tongue :) .

So I said to the owner, ‘Let me ask you something, is that what you think AIDS looks like?’ She said ‘yeah.’ I said ‘Well you are so wrong…I have AIDS.’ She was in such shock, she said ‘No way, Maria!’ I said ‘Yep, I sure am for 20 years.’ you see true enough promiscuous people, iv drug users  just anyone that is high risk may be HIV positive, and it is your job to protect yourself. Funny thing this came from someone that actually sleeps around a lot! I told her listen don’t be fooled by people that look good in the outside or look beautiful…anyone that has unprotected sex once is at risk!

She was still trying to swallow what I just told her. She said, ‘I can’t believe you have AIDS, omg are you ok!?’

I said ‘Yes, I am, but what is important right now is not me..it is you, and you need to know that the ones you know that are promiscuous and look sick maybe HIV+ or use drugs and don’t take care of themselves… but people that are clean, beautiful, professionals, grandmothers, mothers, daughters, fathers, sons…ANYONE can have or get HIV! So next time you are going to have unprotected sex think of me…WHAT DOES HIV REALLY LOOK LIKE? Answer: ANYONE’.

So I know that day I left her and other strangers that I disclosed to with a thought…maybe a little more education :)

I also couldn’t help but think, Man, imagine if I was just recently diagnosed and people were making those comments about dirty, must have AIDS, Ewww, looks sick, so many things that mess with our mind! Hell, sometimes I look in the mirror and think, do I look sick!? But I am stronger now. I am not going to lie! It affects me when people make those comments…but I dust myself off and continue! But a person that is not in that place yet, might feel dirty, low, sick, shame…and it will make them not want to disclose and come out of the HIV closet.

This is ignorance and lack of education. For anyone out there that has gone through this, or overheard comments like this from family, friends, co workers etc etc..I wan’t you to know..yes, I know it makes us feel bad, but you will learn as the years pass that when we intercept a conversation like that and put a different face to AIDS…not only may we change their minds and the stigma, but we also help people with our disclosure in protecting themselves.

I know that it can also backfire and there will be ignorant people everywhere that may not want to deal with us anymore! But it’s their loss…NO MORE SHAME! We are not dirty! We are warriors! People that are dealing with not only an illness, but the stigma that comes with it! And I can only hope for one day any of you that are in hiding can feel as free as I am starting to feel now :)

I am going to end this blog with a quote from Ryan White’s mother! She used to tell him, son keep your head up! And recently she sent a message to people living with HIV/AIDS and said, ‘KEEP YOUR CHINS UP.’

Love and Light as always!

until the next time…

~Maria~

 

This article was cross-posted from “A Girl Like Me,” a program of The Well Project and TheBody.com.  

My Body May Feel Weak Sometimes, but My Spirit Always Pulls Me Through

(But even sometimes my spirit has a limit!!)

Sometimes I feel like I can’t continue. I feel that the energy gets low. This is normal to me … it has always been like this. Ever since I was a teen I had this fear that I had to live every moment to the extreme. This is a good thing, but it can be a bad thing also for people living with HIV or any disease — and even for someone who is healthy.

I think what happens to me is that I live on a constant roller coaster. Ever since I changed my eating habits and practice forgiveness — trying to be in the light and send light to others that may not have love for me — it’s getting better. But as many of us know, we have good days and not so good days … and sometimes I suffer from fatigue and I HATE HATE HATE to feel fatigued!!! Just being there doing nothing … I know I am a very hyperactive person and I am a high energy person. Even if I am laying down trying to relax or even meditating, my mind always tries to roam somewhere on the things I have to do. So basically when my body shuts down, I push it with my spirit! I refuse to let my body control my spirit, but I am learning that I have to balance everything and not go from one extreme to another!

It’s OK if we don’t get to do everything we planned to do today … there is always tomorrow.

 

It’s OK to just be lazy and not do anything. It’s OK to say NO to others when you don’t have anything to even give yourself! Because in the end, if you get sick or overwhelmed, you won’t be able to give ANYTHING to anyone … including yourself.

I am learning to try and not stress on the future … the what ifs … the future is not promised! Our past is gone, so I want to live for today! But here is where it gets tricky for me: LIVE TODAY TO THE FULLEST, BUT NOT WITH THE ANXIETY THAT THERE WON’T BE A TOMORROW. So yes, my spirit is strong as hell! Yes, I am a strong woman! But even the strong fall.

I don’t want to fall. I want to continue on living healthy and having that perfect balance. So even though many years have passed living with this virus, I am still in cycles with it … or maybe I am just getting older and wiser … I don’t know.

I just know that every time I get up and feel 100% healthy, I try to do it all … live it all, but then the time comes when my body says: Maria, slow down or I will make you slow down! So what does my stubborn self do? Push myself to the limit. That is why I know that my spirit is stronger than my body and mind!

I believe that is why when I am emotionally sad or I feel my spirit weak is when I have felt the sickest and this is like a vicious cycle. I hate to feel sick, but I make myself sick taking my body to the limit. So then I find myself laying in bed, not feeling well..thinking too much! And BAM! My spirit stumbles. So I can’t do this to myself anymore!!!

I need to step back and relax and breathe … really enjoy life and the days I am feeling 100%. Sometimes I also think that I do this to myself because I feel that I want to take advantage of feeling strong. I don’t know.

I also have to accept that I am HUMAN … and that we don’t feel 100% all the time! HIV negative people get sick also. They get low on energy also! I have to stop being so hard on myself and my body … even if my spirit always pulls me through.

I have sat and thought — and even friends that observe me have noticed — that I don’t rest how I should. I think I am resting … but am I? Really, let’s think about it … do we really rest our bodies and mind?

Maybe this is one of the reasons that I have been undetectable for more than 11 years and my T cells never go up more than 399 … never ever! Even though I don’t get sick or hospitalized (thank God), this is causing a form of stress in me that I have learned to live with all my life!

So this woman will try and chill and relax. I hope if someone can relate to this, you will also do the same.

There is always tomorrow. Enjoy today, but with measure … hold your loved ones … take time to walk, to watch your favorite show, to share with your family … just put yourself first! There is always tomorrow! And if tomorrow never comes, at least you will leave this life knowing you gave your best and lived the best you could without pushing yourself.

So yes, my SPIRIT pulls me through, and I am thankful for this! But I want spirit, mind, body and soul in harmony as one.

Love and Light,
Maria T Mejia

This article was cross-posted from “A Girl Like Me,” a program of The Well Project and TheBody.com.

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