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Olakino Maika'i Island Goddess Health and Lifestyle HIV-STD Education and Prevention, Substance Abuse |
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Living for today, Young and HIV positive
BY BRIAN VAN DE MARK
There simply is no easy way to begin this article.
If for no other reason, it is because most of us have trouble reconciling
what it means to be 21 and HIV positive – or 19 or 24 or 16. Statistically
speaking, though, most studies – including those released by the Centers for
Disease Control and Prevention (CDC) in Atlanta – indicate that nearly half
of all newly infected persons in the United States are under age 25, and
one-fourth are people under age 21. HIV-related illnesses are the sixth leading
cause of death in the United States for those between ages 15 and 24. The
CDC reports that, globally speaking, 6,000 persons between ages 15 and 24
become infected with the HIV virus each day. Each day! And in the United
States, nearly a quarter go undiagnosed.
Terry Klein lives on the streets. He is 18 years old. His day was
Dec. 13, 2003. Or, at least, that’s the day he believes he became infected.
He managed to make his way into a bathhouse and “became the life of the party.”
“At the time, I remember feeling so beautiful,” says Klein. “All
these men wanted me. It was this incredible skin-on-skin connection. I was
being touched and kissed, and, well, what I thought was being loved.” Instead,
Klein says, he left that night infected with HIV.
According to leading studies, such as those done at the University
of California, Berkley, like Klein, for a large percentage of the gay population,
their first contact with the gay community is through sex – either accidentally
or with purpose. And the younger the person, the less likely he or she is
to know what constitutes protected sex. And, like Klein, the younger the person,
the more likely they are to put their trust in the more experienced persons
involved.
“I couldn’t imagine that someone would actually [have insertive
sex with] me knowing they were positive,” Klein says. “But, hey, that’s what
being 15 and not knowing any better will do to you.”
Klein is unable to hold down a job or keep steady housing. He isn’t
naïve, though, nor does he dwell in the land of self-pity.
Option 1: destruction
“It’s simple,” Klein says. “When you use drugs, no one is going
to let you stay very long.” And he isn’t referring to HIV medications. Klein
admits to being a frequent user of crystal methamphetamine. And most public
housing facilities have a zero-tolerance policy on drugs or alcohol.
“I don’t figure I have that much longer to live anyway, so I figure
live for today,” he says.
University of California, San Diego, has an Anti-Viral Resource
Center that deals specifically with HIV-positive youth. Anthony Johnson is
an intensive-case manager whose focus is the at-risk populations that may
fall out of care due to psycho-social issues like drugs and homelessness.
“In our case loads, 75 percent of the youth we are seeing have
a drug history,” Johnson says. “Mostly it’s crystal methamphetamine.”
And of those who come in and get tested and find out they are HIV
positive, how many immediately see a wakeup call and quit their crystal methamphetamine
habit?
“None of them are completely done,” Johnson says. “Not a one. Later
on, over time and with therapy, with counseling, with understanding the effects
it has on the body, there is a pendulum swing, and people begin to understand.”
According to Johnson, Klein is one of over 400 HIV-positive youth
who are homeless or in need of housing in San Diego. For Johnson, this is
a key element in treatment.
“Housing – and I mean stable housing – is one of the primary components
in getting treatment,” Johnson explains. “It is hard to be on medication,
to focus on your health care, if you cannot afford a place to live.”
Homelessness is multidimensional in the issues it presents, Johnson
says. It is not simply the lack of some place to sleep, but also the lack
of health and nutrition, organized social or recreational activities, as well
as the increased levels of poverty and social isolation.
Klein’s case is not such an unusual case for Johnson.
“When a young person is diagnosed with HIV, we see a range of responses,
some real extremes,” Johnson says. “I would say that about 10 percent of
the youth we see go into what I would call a destructive phase. They do crystal,
they party, they are not going to address the real issues at hand. They avoid
medical care dealing with their HIV.”
Option 2: denial
However, explains Johnson, about 50 percent or so of those who
fall between the ages of 19 and 25 and are newly diagnosed go through a period
of denial.
“These young people are aware of their positive status,” Johnson
explains. “They get their results here in the county, perhaps at UCSD; we
meet with them right then and there. We might hear back from them within a
week or so about a question and then that is it. No more follow-through, no
further acting on this information, nothing.”
Joseph Carroll is 23, and was diagnosed two years ago after his
partner disclosed his own positive status.
“But that was two years into our relationship, and by then I just
assumed we were monogamous and we had both tested negative at the beginning
of our relationship,” Carroll says. Carroll’s partner admitted to having slept
with a number of men during their relationship; men with whom he frequently
engaged in unsafe sex. When Carroll’s partner found out he was positive, Carroll
says “he waited almost a year to tell me because he was so ashamed and afraid
of what I would say.”
The Journal of AIDS published a study in April by the CDC
that reported that in five of six U.S. cities, 77 percent of the gay and bisexual
men who were HIV positive between ages 15 and 29 were unknowingly exposing
their male and female partners to HIV. The CDC’s Young Men’s Survey took
place in Baltimore, Dallas, Los Angeles, Miami, New York and Seattle.
Of those in the study who engaged in unprotected anal intercourse,
48 percent said they hadn’t used condoms because either they “knew” they were
HIV negative, “knew” their partners were HIV negative, or perceived that
their partners were at low risk for infection. In fact, among those infected,
intercourse without a condom was more highly associated with having a steady
partner.
And Carroll “knew” both he and his partner were HIV negative. Not
to mention that this was Carroll’s first long-term relationship. Carroll’s
experience falls into the 59 percent in the study who perceived themselves
to be at low risk of being infected, because he was young, had previously
tested HIV negative, had never been diagnosed with a sexually transmitted
disease or infection, and was in a primary relationship that was understood
to be safe and monogamous.
Nowadays, Carroll says he simply prefers to block it out.
“There must be a reason I was infected,” says Carroll, “but I’m
not out looking for it. When I think about how it happened and all of that,
I’m just too pissed off, really. And frankly, I think the side effects of
medications and the pressures of all of the doctor stuff would be too much.
I would prefer just to let sleeping dogs lie. So I would rather just live
in a world where I don’t have to think about it. It was like having a bombshell
dropped on me. I don’t want to be in the middle of that explosion. Some call
it denial. I don’t. I call it a conscious choice to not deal with it. And
that’s my right.”
The issue here, though, says Johnson, is that people like Carroll
aren’t saying anything or doing anything. They are not getting medical care.
They are not seeking social or psychological assistance. They have no idea
what thei
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Aggressive HIV Strain Found in NY By Marie Auyong http://www.apaitonline.org/newsarticle In early February, reports of an HIV "superstrain" came out of the New York City Health Department. The subject in question, a 40-something gay man, had a strain of HIV which advanced within four months into full-blown AIDS. Since then, the individual´s health has only responded to one of 21 available drugs. Not since the early 80´s, when HIV/AIDS was first named, had medical officials seen someone deteriorate so quickly. Soon thereafter, many public health officials were careful to state that although there wasn´t necessarily a new "superstrain" on the loose, more research had to be conducted to determine the virus´ severity in terms of its progression and extent of infection. Thusfar, the response by AIDS social service providers has been complicated. The New York Times announced the discovery about the virus with the headline, "Report on new form of HIV brings alarm, not surprise." This lack of surprise was partially fueled by an expectation on the part of researchers that a drug-resistant strain of HIV could emerge. Social service providers had also began to document the problem of "safer sex message burn-out," in addition to the rising role that crystal meth plays in risk factors for HIV. Initially, however, some activists considered starting quasi-vigilante efforts-including disrupting Internet chat arranging for sexual liaisons for example, or confronting participants at sex parties. What this means for the gay community, however, is a potential crisis that it must actively confront. While worldwide the HIV pandemic is generally caused through heterosexual sexual transmission and intravenous needle sharing, in the United States HIV has largely been limited to MSM (men who have sex with men) behaviors. HIV´s history is a narrative that continues to dominate gay culture and consciousness, but less so in the past 15 years with the advent of life-prolonging HIV treatments. Social service providers have already documented the rise of sexually transmitted infections (STI´s) in young people 18-24-who never had to live through the onslaught of deaths their older mentors did-to indicate the decrease in urgency they might feel about the disease. Furthermore, with a new strain that is still so little understood, and in a political climate that has been-let us say, slightly less than enthusiastically supportive-of research in traditionally marginalized populations (drug users, sex workers, transgenders, and gay men), no one can predict what kind of backlash could occur towards the gay community. While it probably will not do much good to panic about an isolated case of a drug-resistant HIV (about which we still know very little), these investigations are significant because they point to the future of HIV prevention and treatment: that is, addressing the underlying causes of STI´s. Today this means crystal meth usage, the culture of partying, and public health campaigns which apparently don´t register on the radar as strongly as they used to. The Centers for Disease Control have also initiated new prevention methods focusing on positive individuals, which emphasize testing and partner notifications/counseling. For HIV-positive peoples, this also means a call-to-action to protect themselves and their partners from superinfections. One of the major continuing challenges of HIV work is preventing a disease which carries weighty stigmas, both for its affected populations and transmission methods. How to effectively address the socio-economic-physical causes of HIV in a compassionate manner, while maintaining the assertive overtone needed in prevention messages, requires a delicate balance. In the face of this aggressive strain, APAIT will have to adjust once again. r viral load is or their T-cell count.
Unlike Carroll, Johnson says this kind of denial typically only lasts about
four to five months.
Option 3: balance
If 10 percent go into what Johnson
describes as the destructive stage and around 50 percent go into what Johnson
describes as the denial stage, where are the rest?
“Then there is the other half,” says
Johnson, “who are right on it from day one. We get them in for an appointment
within the first week, we begin health education, they are calling in with
concerns, they are aware of their numbers and what they mean. They understand
what safe sex is, and we begin discussions around disclosure, relationships,
and coping with those issues that arise with being HIV positive.”
For Josh Royle, 21, that is easier
said than done. Royle was diagnosed as HIV positive on Sept. 2 last year.
“When I was in high school,” says Royle,
“I thought I would probably kill myself if I ever became positive. I mean,
it seemed like such a death sentence anyway. It was the one thing I feared
the most.”
In fact, most studies show that young
people who self-identify as gay, lesbian, bisexual, transgender or questioning
attempt suicide at a significantly higher percentage than other young people
(somewhere between 25 and 30 percent, by most studies). Factor into that equation
the news that you are HIV positive, and most researchers would agree that
the number skyrockets.
In an article by Daniel G. Taylor called
“Homelessness, Sexual Abuse, Family Rejection: HIV and Gay Youth Suicide,”
Jaimey Michael-Richards, a genetics researcher, says: “The connection between
HIV and suicide cannot be ignored. Many people with HIV do kill themselves,
but it’s not simply because they have the virus…. Suicide is a topic people
get into when they get sick, not when they’re diagnosed. Some kill themselves
when they’re diagnosed with HIV, some months later, and some not until they
are given an AIDS diagnosis. Often people decide to take themselves out when
they are given an AIDS diagnosis. Often people decide to take themselves out
when they get to a certain point. It’s when you lose your value of life. When
I feel I can’t conduct a conversation, for example, that’s when it is time
to go.”
Royle believes his infection happened
one of two ways. He was dating a guy at the time who assured Royle that he
was negative, even though he knew he was positive. Royle, like many young
people, trusted his boyfriend, and they had unprotected sex. The other possibility,
Royle explains, is that he was raped in Los Angeles. Royle never reported
the rape. He was sick in bed for eight days straight. In fact, after the fourth
or fifth day, he couldn’t even get out of bed to go to the bathroom.
“It’s unclear which it was,” Royle
says. “It had to be one or the other – or both.” Between the two, Royle says
the fears were enough to drive him back to his thoughts of suicide in high
school.
However, suicide wasn’t his course
of action.
“I said to myself, ‘It’s alright. It’s
not the worst thing, and it’s going to be a difficult life adjustment, but
nothing is impossible,’” Royle recalls. “I’m still the same person; I just
have to be more careful.”
By that, Royle isn’t talking about sex.
“I have to start taking better care of my body,” he says. “I have
to be able to recognize signs of problems or changes within my body. I have
to build up my defenses for those who might be closed-minded. I have to educate
myself and others.”
The real heroes, says Jerry Turner of San Diego Pozabilities, a
social group for HIV-positive men, are the young people who are able to struggle
through either their initial destructive or denial stages – stages he avers
every person has the right to go through – and then find a balance. Like
Royle.
“Being young and positive is devastating,” says Turner, 61, who
was diagnosed himself in 1985. “I don’t care whether you’re talking about
the ’80s and ’90s, when being diagnosed meant you had only a few months to
live, or whether you are talking about today. Fears that young people have
are the same: horrible social stigmas, lack of social systems, and lack of
awareness of HIV services and organizations.”
he moment you hear the words
“At first you are so raw psychologically,”
says Rafael Acevedo, who was diagnosed three years ago on Dec. 9, 2002, at
27 years old. Acevedo is very open about his fears of learning his status.
“I was afraid of the burden to my body and mind. I wanted to avoid hearing
those words at all costs.”
After all, says Acevedo, he had been
tested every six months or more since he was 18 years old, and he had only
been with trusted, loving men. Like so many young people, he believed he was
invincible.
The CDC ranks California as ninth in
the nation for sexually active adults who have been tested for HIV, reporting
just at 50 percent, but California doesn’t even fall in the top 30 of states
whose sexually active adults have been tested for HIV in the last 12 months,
at around 34 percent.
And while there are lots of reasons
these numbers could be skewed, says Johnson, there is no arguing the fact
that a large percentage of people – mistakenly – believe they are not at risk,
or are simply too afraid to hear the diagnosis. And this, researchers say,
is what is propelling this epidemic.
People get tested for various reasons,
some because they follow the recommended guidelines to get tested every six
months. These are the ones who may fear waiting for their results, but who
assume they will be negative. For others, their results are feared in a far
more intense way. For some, it’s because a condom broke. For others, like
Royle, it could be due to rape. Others end up sick and in the hospital with
flu-like symptoms.
Regardless of the expectation, reactions
are as varied as the individuals receiving the results.
Acevedo says he was emotionally frozen
when he learned of his status. He explains how he turned that emotional freeze
into education.
“I allowed my brain to take over,”
explains Acevedo, who has a master’s degree in counseling and is the co-founder
of San Diego Young Positives, a social group for those who are HIV positive
between ages 18 and 35. “I needed to know what my antibody load was, what
an antibody test versus a viral load test was. Where are my resources? Who
should be my physician? I wanted to get my hands on every piece of education
I could. But I wouldn’t allow myself to feel anything.”
Justin Newman’s reaction was entirely
different. He is 24, and was diagnosed last year in March.
“My doctor had already told me it looked
like an HIV infection,” Newman says. “He said, ‘We don’t know, but we can’t
rule it out. That’s more than likely what it is.’ At that moment, I was like,
‘Oh my God, I hope not.’ But somehow I knew. I remember having protected
sex with this guy and the condom broke. He was bleeding everywhere. I wasn’t
worried at first, because he had told me he was negative anyway. After he
saw that, he admitted he was positive. But I was hoping for the best. When
I came back in for my results, I didn’t know what to say. I was literally
speechless for about an hour. It was one of the most awkward moments of my
entire life.”
But don’t mistake Acevedo or Newman’s
current states of mind with their initial reactions. In fact, if there is
one thing that all these young people seem to have in common, it is that who
they are today is an evolution from the moment they learned their HIV status.
“For the first year, I felt like I
was a walking disease,” Acevedo says. “I felt like it was so obvious that
I had HIV, that I had this contagious and deadly disease. Coming to grips
with that was like coming out all over again.”
For Royle, after being sick and in
bed for eight days, he went to get tested. His test was negative.
“That was on the 23rd,” Royle says.
“I knew it was wrong. I went back to the clinic and was [re]tested, and sure
enough I was positive.”
Coming out all over again
Shane Frey, 24, who was diagnosed on
May 13, 2004, would be one of Jerry’s heroes.
Although diagnosed in 2004, Frey says
he knows he was positive long before that.
“I just know,” Frey says. “The play
that we had was capable of exchanging the virus, and the last time I had tested
I was negative. The guy I was playing with says he was negative, and I would
like to take him at his word. I was very close to this person, and he wasn’t
the kind of person to lie. I only found out later that he was positive.”
The fact is Frey wasn’t surprised at
his diagnosis all.
“At the time, I was using drugs heavily,”
he says. “It was so irresponsible and I just didn’t care. I was young and
coming to grips with being gay. I was abused as a child, and I didn’t have
the best self-image. I had an abusive, alcoholic stepfather who kept telling
me I wasn’t good enough. You hear that long enough, it gets to be in your
head. That made me believe I was something less than I actually was. And then
to realize I was gay. I guess I was slowly trying to commit suicide. The
drugs and the sex were just my own way of doing that, I guess.”
Adam Fisher is 21 and he was diagnosed
at 17 with HIV. He is what one might call a “bug chaser” or a “charge chaser.”
Fisher says he will “celebrate his fifth anniversary as positive this spring.”
When Fisher was first coming out, he says he noticed that all the nice men,
the men who seemed to care for him as a person rather than a young surfer,
all had one thing in common – they were HIV positive. But, Fisher recalls,
they were unwilling to date someone who was negative.
“There were too many emotional issues
with being sero-opposite,” says Fisher, who continues to date only HIV-positive
men. “I tried really hard to understand why someone wouldn’t date me just
because I was negative. So, basically, I decided I would just become positive.”
In a way, Fisher argues, he needed to be positive for his own happiness.
Fisher is unflinching – and unapologetic
– in his decision, and says he went to a lot of trouble to become positive.
Drugs, bathhouses and sex parties were part of his normal routine. He would
get tested every few months to make sure.
“I wasn’t completely stupid,” Fisher
says. “I knew I wanted to be positive, but I didn’t want to die. I needed
to know as soon as possible so I could start my medications and things.” What
Fisher needed was to belong to that group of HIV-positive men. It was, he
says, like “wanting to get into a country club and realizing you’re black.”
But Shane Frey wasn’t deliberately
seeking to become infected – at least not on a conscious level.
Frey explains that accepting his diagnosis
was part of his path toward enlightenment. In short, he says, “I had to grow
up fast.”
Frey, who is now in recovery and no
longer uses illegal drugs, finds that his diagnosis has helped him become
the person he was to become.
“You reach
an age where that inner child is still inside you as an adult, and you are
trying to block out all the bad stuff,” Frey says. “And you say, ‘I’m not
any of those things.’ Having a life-threatening illness that few others have
makes you much more aware of who you are supposed to be.”
Unfortunately,
says Frey, the young man who infected him passed away three months ago.
“He couldn’t
stop doing crystal,” Frey says. “So eventually it ate him alive. He was an
amazing, loving person who was swallowed by addiction.”
The person
most grateful for Frey’s courage in standing up to his trials is his mother,
Cherrie Cusumano.
“We had
talked about the fact that he might be positive for awhile, even before he
was actually tested. After he decided to go in and get tested, he called me.
At first I was shocked,” Cusumano says. “I thought he had AIDS. I didn’t know
the difference between the two. I was devastated that he would die right away.
But we became closer, and we are spending as much quality time as possible
together.”
Cusumano’s
primary fear is that she might have to bury her son.
“It’s pretty
unfair, really,” Cusumano says. “That is not how it is supposed to be, but
I think about that all of the time.”
Frey recalls
that this concern – of a mother having to bury her own child – was the first
thing she said to him when he disclosed his status.
“She looked
at me and said, ‘If you die before me, I will kill you myself,’” Frey says.
“But I have a great sense of my life. I’m not going to die before her.”
“Family
and disclosure is a very difficult thing,” Johnson says. “The age group we’re
talking about, most of them are still living at home or going to school and
somehow being supported by parents. Disclosing your status brings back all
of the gay connotations and emotions the parents went through the first time.”
The question
is, then: Are the parents strong enough to handle this “second coming out”?
Frey’s
mother is. In fact, Cusumano has become one of her son’s leading advocates,
and, by default, one of HIV’s most outspoken moms. Cusumano was determined
to become educated about the virus. After all, her first reaction was that
her son had AIDS and that he would be dead within a matter of months.
Two years
later, Cusumano is still learning – and talking.
“I don’t
think this is being taught in high schools properly,” Cusumano says. “How
else do we explain how rampantly it’s growing? Even I get tested every six
months now. And I tell everyone I know to get tested. I stress the education
element.”
Cusumano
isn’t playing around, either. “It is so important to me that people understand
my son, my Shane, is normal. He just has HIV. He’s not a leper, and it really
angers me when people label him. I know how they feel. I used to be uneducated.
I used to worry about what would happen to me or others in my home if Shane
left a comb lying around. But you have to become educated. I want to know
what the symptoms are going to be in the beginning, the middle and the end.
I want to know what he is going to be going through. Doesn’t every mother
feel that way about their child?”
And Cusumano takes some of her courage from her son.
“My son is open about being HIV positive,” Cusumano
says. “If he can be that brave, then so should I. I tell everybody. I am
constantly on the lookout for something to help him. If I see a new product
out, I find it and make them send it to my son to see if it will help him.”
Beyond just education and love, Cusumano offers her
motherly advice, too.
“I try to encourage him to be honest,” Cusumano says.
“I remind him how he got it, about the guy who was not honest with him. I
want him to live with his integrity. If there’s a relationship or sex involved,
I want him to be upfront with that person. It is so important to live an
honest life. Surely, that is something Shane has learned from this experience.
Maybe we can help others through our family’s experience.”
Royle’s parents are supportive, as well.
“My parents were kind of glad to find out,” Royle
says. “All they knew was that I was really depressed and had stopped going
to work. They were relieved. It was something they could handle. It was a
disease they could understand. And they then understood the depression wasn’t
uncalled for.”
Like Frey, Royle says he simply had to take the love
that he could get and turn that into energy that would propel him forward.
What does life look life for Royle? “I have a lot
more hopes. I didn’t used to like myself. I have learned to care about myself
and for myself. I have a place that I now can fill with love. There is just
too much potential. I don’t know how long I will live, though I have always
thought it would be a long time. Now it is more questionable, less definite.
But at least now it doesn’t scare me. I am not afraid of dying. But I am
not afraid of living, either. In the next five years, I am going back to
school to study theater. I know this sounds silly, but I will be on Broadway
one day.”
Well, says Carroll, nothing could sound less silly.
“Can you imagine any Broadway star not saying that?”
In fact, studies show that most people living with
HIV are living much longer, fuller lives compared with 20 or even 10 years
ago. Advances in medication and education have made it possible for people
like Turner to be living productive lives 20 years after being diagnosed.
“Life has changed a great deal for people newly diagnosed,”
Turner says. “It certainly isn’t universal, but by and large, people are
living much longer lives than we who were diagnosed in the ’80s or ’90s ever
hoped to live.”
And those differences, says Turner, leads to some
very positive social and emotional changes.
“One of the biggest changes is how people view their
money and health and future,” Turner says. “When our community was first
learning of this disease, people threw their hands in the air and awaited
death.
“And doctors don’t just sit there anymore, either.
They know how to handle the issues, both the medical and psychological. There
are more choices, and the doctors and support groups are putting them forward.
This difference in social and emotional changes leads to new expectations.
And these new expectations lead to a new courage. Now a person can be diagnosed
with HIV and still look forward to a healthy future, given the right approach.
In many ways, it’s just not a death sentence anymore.”
But don’t say to Frey, “Well, at least it isn’t a
death sentence anymore.”
“That is the most negative thing for me to hear,”
Frey says. “Imagine having cancer, being sick every day, and being told,
‘Well, at least there’s chemotherapy.’ Don’t tell me HIV isn’t a death sentence
anymore. It threatens my life every day.”
Royle agrees.
“Everyone says that when they first find out,” Royle
says. “I hate that expression. It makes me sick. Because I’m not through
mourning my loss, and having it trivialized is really difficult for me to
bear. Being diagnosed with HIV was the most important thing in the world
to me, it was the thing I feared the most, and when it happened, I was dumbstruck.
So to trivialize that with those simple words in unforgivable.”
The loss Royle refers to isn’t the loss of his T-cells
or his HIV-negative status.
“I guess you could call it the loss of my innocence,
my naïveté, my optimistic, playful youth,” Royle says.
That’s a pretty grown-up answer for a 21-year-old,
says Johnson.
“Being diagnosed with HIV is a life-altering experience,”
Johnson says. “It puts someone in the position of acknowledging their own
mortality. It’s a grieving process, where you are grieving a loss of lifestyle.”
Newman says he knows the grieving process well.
“I had never thought of myself as ever being positive,”
Newman says. “In fact, I was one of those guys who if someone hit on me and
I found out they were positive, I would turn [them] down because of their
status. Now it puts me in their place. It’s opened my eyes.”
Newman says he is still getting used to being positive.
“I was never one of those people to rely on medication
for anything,” he says. “Even if I had a headache, I wouldn’t take aspirin.
Now I have to take extra steps, like taking the time out of my day, every
day, to remind myself to take my medications. I used to hardly ever go to
the doctor, and now I go literally every month. I can’t eat raw fish because
of the bacteria. I used to work in construction, putting in 12-hour days,
and never be tired. Now, at most, I can pull six hours before I get tired
and need a nap.”
Rick Linell is 22 and was diagnosed a little over
a year ago. He talks about his life changes, and sums it up like this: “You
know that book called Don’t Sweat the Small Stuff…and Everything Is Small
Stuff where it tells you to not worry about little things? I think that’s
bullshit. Frankly, after being told I have HIV, the small things are all
I have control over these days. The big stuff – death, dying, family rejection
– I have no control over those. But whether my fries are crispy, now that
I can control. And when you’re dealing with something as out of control as
being 20 years old and diagnosed with HIV, buddy, you better believe you
need to have some control on something, or you’re likely to go insane.”
Newman is really clear about his biggest fear: He
doesn’t want to be a burden on anybody else. In fact, Newman says he hasn’t
really dated since he was diagnosed.
There are a lot of reasons why people might not date
immediately after their diagnosis, says Johnson. For one, they may not feel
attractive, either physically or emotionally. It may depend on how they were
infected. If it was a very negative sexual experience, like rape or deception,
the whole idea of intimacy may be a factor. Also, disclosing one’s status
can be a very vulnerable experience.
Newman is not alone in that area.
Chris Gomez was diagnosed in 2001. He is 26 years
old now.
“Dating is a tough cookie,” says Gomez, a former Center
board member. “When I was first diagnosed, I viewed myself as damaged goods.
I was a hopeless romantic, a Latino who was brought up to be in a monogamous,
straightforward relationship. But then I became uncertain of how long I was
going to be here, and then there was the whole question of when to tell someone
you’re positive. In the beginning, before there is time for an attachment?
Or do I wait a few weeks or months after we have a chance to get to know one
another?”
For Kaleb James, co-founder of San Diego Young Positives,
the answer is simple.
“I tell them straight-up,” James says. “It weeds out
the bad guys.” James rarely beats around the bush in any conversation. He
moved to San Diego from a small town in Utah called Milford the day after
he graduated high school. James’ parents disowned him after he disclosed
he is gay, and he moved to San Diego with $600 and a fierce determination
to succeed in life.
James works as a manager for a radiation and chemical
safety services company and models on the side. There is little about the
James you meet today that would reflect the fear, loneliness and disappointment
of the teenager who arrived in San Diego from a graduating class of 30. There
is little in James’ swagger that would tell you the pain experienced in losing
every one of his friends when he disclosed to them he was HIV positive. Like
many young men who sero-converted, James was in a relationship with someone
who said he was negative but knew otherwise.
“I was more hurt about having been lied to and deceived
than I was about having been infected with such a horrible disease,” James
says. “I cannot change the fact that I am HIV positive. I can only change
how I react to being HIV positive.”
For James, that means being upfront and honest from
the get-go.
“A lot of people are shocked to learn I am HIV positive,”
James says. “I hear things like: ‘You don’t look sick,’ or ‘You are too young.’
I guess the point is: HIV doesn’t discriminate.”
For many positive young people, there are a lot of
reasons why it would make sense for two people who are positive to date.
“When I was diagnosed, I thought, ‘OK, now I can only
date poz guys,’” Gomez says. “They know my pain. But then there are so many
other issues, too. You could have different strains of the virus, and many
guys who are positive figure it is OK to have unprotected sex with other
positive guys. There is still so much education to be had. So I treat each
relationship with respect.”
For others, that kind of self-confidence doesn’t come
so easy.
Paul Morgan is 25 and was diagnosed at age 18. Since
his diagnosis, he has never had sexual relations with another person.
“It is one of two things, or likely a combination
of both,” Morgan says. “On the one hand, I simply cannot stand there and
tell someone that I am positive for fear of the look on their face. And on
the other, just the very outside chance that I would give someone this disease
– and yes, in some ways I mean the virus, but in many other ways I mean the
daily burden of living with my own mortality at such a young age – is unbearable.”
According
to Johnson, Morgan is not such an uncommon case. About a quarter of all newly
diagnosed young people go into a period of abstinence, either for lack of
sexual desire or for fear of infecting someone else. This is common for about
a year or so, Johnson says. After that, a quarter of those individuals will
continue with abstinence.
Royle,
who, like James, lost a lot of his friends when he disclosed his diagnosis,
likely understands Morgan’s feelings.
“My friends
weren’t well-equipped to deal with a friend becoming positive,” Royle recalls,
“partly because my recent behaviors mirrored their own. They questioned a
lot of their own decisions. That’s part of my issue with dating, I think –
the rejection element. I haven’t had a boyfriend in two years, and I don’t
do much dating. I have to focus on me.”
Part of
that, says Johnson, is the psychosocial factor that there simply are not a
lot of groups geared toward youth and the socialization element of HIV-positive
young people socializing with other HIV-positive young people without the
therapy element involved. That is, just young people having a safe and fun
environment to be themselves.
For Avecedo
and James, that is the exact reason for San Diego Young Positives. The group
was originally formed as part of San Diego Pozabilities, but has since split
in order to provide a space for young people to socialize with men of their
own age. San Diego’s Imperial Court serves as the fiscal agent for the group.
Avecedo estimates membership to be about 100.
Living
for today
For many
young people who find out they are HIV positive, they have worked the seemingly
forced need for maturity to their advantage. Avecedo, Gomez and James are
testaments to this. Others are dealing with their diagnosis in a way that
is relevant and meaningful for them, if perhaps not what most experts might
recommend. Klein, Carroll, Linell and Fisher are all testaments to this. Others
might still be looking for their place, like Newman, Frey and Royle. Interestingly,
though, the phrase “I’m living for today” seems to come up frequently, regardless
of the person with whom you speak. What is interesting is the definition
– or application – of that expression.
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HIV, AIDS and STD in our Community |
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Melenie
Eleneke Transgender Health Program Coordinator Filipino Task Force on AIDS blog.myspace.com/index Our Global Community
My first
prevention message, is an anecdotal one of service and commitment from the
HIV Positive Community providingHIV/AIDS prevention by example. The HIV Stops Wth Me campaign deals directly with sex and condom use, while it also raises important themes like responsibility, communication, and disclosure of status. Each spokesmodel has a personalized message to deliver to other people who are positive. The messages are hopeful and supportive, and they also make people think about what they also make people think about what they are doing to stop this disease. I strongly believe in the work we are doing and believe that our HIVSWM high-profile visibility allows each of us individually and collectively to serve as posittive HIV+ role models to educate and empower others by example, and to speak to the power of maintaining good health and well being. It is my privilege and pleasure to support the campaign as a Hawaiian mahuwahine and to be included among and graced by such powerful company. A personal favorites are Sylvia and Grissel, both positive since 1986. Sylvia is a wonderful person & mother and is Grissel's role model. Grissel empowers countless others by her courage, wisdom beyond her 17 years and teaches us that youth can have a fresh, positive perspective, and mentorship role which should be cultivated. Overall, this diverse group of dynamic individuals is so empowering in their message and in the work that they do from coast to coast in San Francisco, Los Angeles, Boston, Seattle, Long Beach, Oregon, San Diego -launching September 22- San Diego, and New York- in developement and soon to launch. All the spokesmodel are acheiving much in their respective cities. From the very first day that I was diagnosed with HIV, it has been my empassioned mission to mobilize into the commnity to kokua in HIV/AIDS prevention and healthcare efforts. I'm humbled by the work that I do, the people with whom I work, and am grateful for the daily opportunity to learn while hoping to make a difference. All the while, I do what I can while still maintaining self-care and a healthfully positive perspective. The work that I do with HIV Stops With Me is but one of the many ways that I serve and it provides me a wonderful sense of fulfillment for which I will continue on my path. Finally, I'd like to pose the question, 'How doesd HIV stop with you, the reader?' Accepting responsibility for the choices you make and accountability for any subsequent repercussions should provide a clear path for your answer. Find more information at the Website HIV Stops With Me and Melenie's bio. Filipino Task Force on AIDS Magazine Article HIV Stops With Me guest contributor posted on the website in December 2004 During most of my life, I never thought that I would openly and publicly come out as a transgender woman or disclose my HIV status. While I have several disclosure issues surrounding these two very personal identities as a human being, I have found comfort in the knowledge that sharing my life's stories have helped many people to understand on many levels the diversity there is in being HIV positive and a transgender woman. I'm the youngest of five siblings and I disclosed to my sister and middle brother my HIV status. I didn't disclose my status to my mother because of my fear that she would not have enough of an understanding of HIV and because I didn't want her to worry incessantly. For similar reasons, I didn't disclose to my stepfather. I have since told my other two bothers and now believe that that I must disclose to my mother as I don't wish her to find out from anyone else but me that I'm HIV positive. The path leading me to my HIV positivity was strewn with high-risk behaviors for which I bear the shame and indignity of my hurting my own spirit. Bearing this in mind, I do not regret anything that I have done but reflect on what I have done so I can better prepare others and myself for a better future. The HIV/AIDS prevention efforts of many people before me have allowed me to continue in their efforts to augment people's awareness and education in the best interest of the entire global community. To help augment my own awareness and education in reducing my personal high-risk behaviors and struggles with recovery from substance abuse led me into the Stimulant Treatment Outpatient Program (STOP). For the past two years, I have learned many coping skills and now feel that I have a new lease on my life that I thought was nearly impossible. The network of support to which I have been introduced through my being a client of STOP has been very helpful to my healing my aloha spirit. My Christmas birthday has always made me want to have the money with which to abundantly give during the holiday season. I do not have the money to give during this the holiday season but do have much to give in the way of my aloha spirit. My lack of financial stability cannot compare to the wealth of dear friends, family, and community network support that I have within my circle of life. It is because of these very people that I'm able to share the true spirit of aloha with everyone I meet. My physical, emotional, psychological, and spiritual well-being is greatly and positively impacted by the fact that I feel I'm very fortunate to have so many wonderful people in my life. I'm humbled by acknowledging the many gifts I have and I try to not dwell on that which I don't have in my life. The spirit of aloha is such a wonderful experience and I'm very happy that I can say that I feel that I'm returning full circle to a rich heritage for and of which I'm very proud and privileged to be a participant. May all who need some words of encouragement be able to share in "The Wonderful World of Aloha". Aloha is so special and can be universally translated into many languages and forms. All it takes is for one to believe in oneself and to have the true gift of being able to share aloha as aloha is shared through its own reciprocity. Me ke aloha pumehana a pau'ole . . . Melenie Mahinamalamalama Eleneke
Melenie will continue working on her Health
Sciences Bachelor's program in the Spring of 2003 with the ultimate goal of Melenie is a haumana hula (hula student)
with one of Hawaii's most prestigious and renowned halau (dance studio or
hall) |
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Hawaiian Kumu Transgender Health Educator Asian & Pacific Islander Wellness Center Aloha Kakou Wahine u`i
My name is Tatiana Kaneholani from the island of Kaua`i. I live now in San Francisco working as a Transgender Health Educator for all Asians and Pacific Islanders in the bay area. My duties includes facilitating all rap groups for at the most 25 ladies who are like all of us are at High risk for HIV/AIDS STD transmission. I will be posting most of my education materials on this web-site for you to have and administer as you see fit. Please know that all information that will be posted are updated information gathered by CDC (Center of Disease Control) and other health agencies that are focused on TG issues and concerns. As we move foward in life as Island Goddesses we need to understand that we are special in every way and also part of todays society and gaining new public attention from all we associate, encounter and appreciate in our private space and life. The men in the world are getting more and more good looking. But looks can be deceiving. Which puts us at high risk of getting something we can't see. So observe his areas and ask him when was the last time he got tested. All these questions will make him more aware that you are concern about your health and his as well. Listen to the way he answers your questions cause you can tell by the tone of his voice if he is lying to you or just plainly don't know. The choice is yours sisters. Mahalo nui loa, Tatiana Kaneholani Words of wisdom: It is not about what direction we are headed, But how we get there. If you have any questions or concerns about STD tranmissions plese feel free to contact me at my office at tatiana@apiwellness.org Asian Pacific Islander Wellness Center HIV FAQ Clinician Guide.pdf |
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Esera Tuaolo was born in
Honolulu, Hawai‘i, on a plantation and was the youngest of eight children. Since coming out, the strikingly
handsome Esera has received a wealth of support from the gay community and
has even appeared on the cover of Advocate. We are so proud of the steps he
has taken, and UTOPIA commends him on behalf of GLBT Polynesians everywhere
(and now we know, we are everywhere!!)
The joy isn’t shared by
all, however, as Esera has also met with a lot of controversy, especially
from his very own Samoan community.
Comments like, “you are a menace to our Samoan culture,” to
“gays are wrong types of mentality,” and “gays started AIDS” have come from
many outraged Samoans who are “Thanks for the support! I only pray that people will understand
that this decision has no reflection on my family, friends or race. It was a quest for happiness, and
it was time to not live in pain.
I am Samoan, and I am proud. I pray that the people of Samoa
will not look upon this as shame, but to realize that a Samoan will be helping
thousands of children around the world not take their lives just because they
feel different; but it will help them realize that they are special. As one poet puts it ‘LOVE IS THE
ANSWER,’ and as Jesus said ‘LOVE OTHERS AS YOU LOVE YOURSELF.’”
Esera’s courage to come
out has brought us a step closer to being accepted in our communities, and
to acknowledge that there are large, masculine Polynesians who are
gay. Esera reasons for coming
were not political, but very personal—he knows what young mufi kids go through
growing up in a society that does not accept them. Yet his hope is to save those kids
from taking their own lives simply because of who they are. Research has shown us that gay
youth are at high risk for suicide, drug use, being runaways and throwaways
(meaning their family disowned them), and for dropping out of school. This holds true here in Hawai‘i
where many kids runaway from home to escape the abuse. Some end up working the streets
and turning tricks just to survive.
Many of them get into abusive relationships or turn to heavy
drug use because of their low self-esteem. This all contributes to increasing
their chances of getting HIV and AIDS.
Research has shown that family acceptance of their gay sons plays
an important role in keeping them safe from HIV and AIDS. A recent study done by Raphael Diaz with over 900 men
of color found that some gay men who had “hard lives” (used drugs,
sex with plenty people, experienced racism and discrimination or had abusive
partners) were still able to be safe and not get HIV, while others with similar
lives did get infected. What
were the differences between these guys? Raphael called them “Resiliency
Factors,” of which a major one included: 1) family
acceptance of their gay child Who could be a better role model for our kids than Esera Tuaolo? http://www.eseratuaolo.com |
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What is Harm Reduction? Most people know by now that serious, life-threatening infections, like HIV and hepatitis, can be passed from one person to another through sex or sharing injection-drug works. One approach to lowering this risk is called "harm reduction." If you are not ready or able to stop using drugs, or do not want to abstain from sex, harm reduction offers options to make sexual activity or drug use safer.
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Health Organizations
HIV-STD and Substance Abuse |
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| Ke Ola Mamo -Native Hawaiian Health
Care Systems |
Safer Sex |
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| Asian Pacific Islander Wellness Center
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Hearts
and Minds |
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| Seattle Counseling Service for Sexual Minorities |
HIV Insite | |||||||||||||||||||||||||||||
| FFTA |
Growth House.org |
Aids.org |
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| HIV Stops With
Me |
HIV Insite.edu |
HIV Information |
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| SFAF |
Asian Pacific AIDS Intervention
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Malama Pono.org |
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| Life Foundation |
NASPA Health Resources |
HIV Testing |
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| AIDS
Quilt |
the Body.com |
Seattle HIV
Resources |
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| CDC HIV STD Prevention |
Campaign
To End AIDS |
Until There's a Cure Foundation |
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| AmFAR |
American Red Cross |
Women and HIV/AIDS |
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| AIDSline |
PEP
Guidelines |
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STD
Information
What is Herpes? Herpes is a sexually transmitted disease caused by two herpes simplex virus (HSV type I and type II). Herpes is transmitted from person to person via direct skin-to-skin contact during oral, anal and vaginal sex. HSV I usually causes fever blisters and cold sores on the mouth, but can also cause sores on the genitals. HSV II usually causes sores on the genitals (vagina, penis, anus) and the skin around those areas. The majority of oral herpes cases are caused by HSV I and the majority of genital herpes cases are caused by HSV II; however, since so many people are now having oral sex, type-I is increasingly appearing in the genitals. HSV is different from other common viral infections because once it is introduced into your system, it lives there forever, often with periodic symptoms or without symptoms at all. How many people have it? About 50 to 80% of the adult population in the United States have oral herpes. About one in five adults in the United States has genital herpes; however, as many as 90% of these infected people don't know they have the virus. There are no accurate numbers as to how many people in San Francisco have herpes as it is not a reportable STD. Why worry about Herpes? Genital herpes is seldom a severe or dangerous infection by itself, although it can cause psychological distress because of the nature of the sores and the length of time the virus stays in your system. The open sores of herpes do play a role in the spread of HIV. A person with a herpes sore is three to five times more likely to acquire HIV if exposed to an HIV-positive sex partner. Also, people with HIV and herpes have an increased amount of HIV fluid in their open herpes sores, which increases the risk of transmitting both diseases to a partner during unprotected sex. Pregnant women who have a first episode of genital herpes near delivery may transmit herpes to their infant, which could be a serious, even deadly, problem. Fortunately, infection of infants is rare among women with recurrent genital herpes. What are the symptoms? Many people have genital herpes but don't know it because they have no symptoms. Others have very mild symptoms. For the third group, who are symptomatic, the first outbreak is usually the worst. It lasts the longest, is most severe and often very uncomfortable. The initial sores can last five to ten days, first "weeping", then scabbing over, then healing. In addition to blisters or open sores, a person may have swollen glands, fever, and body aches. Women tend to have more severe symptoms than men. Genital recurrences after the first outbreak seem to be linked to stress, fatigue, lack of sleep, menstruation, and genital friction (new sexual partner after a time of no sex), although more research is definitely needed about this subject. Usually recurrences are more frequent in the first year after the initial outbreak. Some people have tingling or itching at the site of the sores before they appear, which can help them prepare for an upcoming outbreak. For some people, the recurrences are so mild that they have been mistaken for jock itch, razor burns, insect bites, ingrown hairs, and the like. Outbreaks can appear in different locations over time. What is a Herpes test like? In most cases, experienced clinicians can diagnose an initial herpes outbreak by its appearance. There are also viral culture tests available that can tell if herpes is present and which type (HSV I or HSV II). These tests use fluid from an open sore and are most accurate during initial outbreaks and when blisters are present. There are several new blood tests that are very accurate for diagnosis. These tests also distinguish type (HSV I or HSV II). Speak to your medical provider about these tests if you're interested. How is Herpes treated? There is no cure for herpes. However there are currently three FDA-approved antiviral medications that are available to treat herpes: Zovirax (acyclovir), Famvir (famciclovir) and Valtrex (valacyclovir). Using medication to treat genital herpes can help speed the healing process of an outbreak or be used as a preventative (when taken daily) to help reduce the frequency of future outbreaks. Valtrex has also been proven effective when taken daily to reduce the risk of transmission of herpes to sex partners. The most common short-term side effects of these drugs are nausea and headaches. Thus far, no long-term side effects have been named. What can I do if I have Herpes? In order to reduce outbreaks, keep your stress levels low, eat well, exercise regularly and get lots of rest. Learn to recognize the symptoms that occur during the period before the lesions appear. People often describe a tingling or burning feeling during this time. Taking medications in this time period before an outbreak can abort or reduce the duration. In order to avoid transmission of the virus to your sex partners, we advise discussing your herpes diagnosis with a prospective partner before you have sex. A potential partner would need to understand that it's possible for him or her to become infected even if you're using condoms since not all affected areas can be covered by a condom. Most good relationships can weather the news. Your partner may want to gather information and take some time to adjust to the fact that you have herpes. If you're in a serious, long-term relationship, your partner might want to test for herpes as he or she might already be infected, but without symptoms. How do I avoid getting Herpes? Condoms provides some, but not complete protection, against transmission of the herpes virus. If you or your partner has herpes, abstain from sexual activities when sores are present. Communication is a wonderful tool to help you and your partner(s) make decisions about what's right for each of you at any given time. Herpes Photos |
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| Substance Abuse in our Community
Aloha as many of you
know my name is Stacia Ohira, aka ah lets see I have so many aka’s
I don’t know where to begin… I will begin however
by saying that I am so thankful and so grateful to be alive and to be able
to be sharing with you all right now. Sometimes I often wonder with all of
the high risk behaviors that I did in my lifetime why I am not HIV positive
right now. Perhaps it was an intervention from GOD or perhaps it was this
or perhaps it was that. All I know is that today because of my life experiences
I choose to actively disseminate information to my sisters. Growing up on Oahu and
on the streets of Pauahi, Hotel, Maunakea, and the rest of the downtown areas
life was a risky one. Going through the many struggles of sexual identity,
inferiority, and pure fright I went down the substance abuse road besides
many others. Not feeling that I fit in to society I chose to self medicate
and stay high for the majority of my life. It took me going to prison and
substance abuse treatment for many years to realize that I was a special person
and that I am going to succeed in life.
Despite many barriers such as my parents not accepting my lifestyle, my felony conviction, my various shortcomings I still press on. Today I choose to live… |
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Helping Friends and Family Members with Addiction
I’m sure we’ve all heard (and sometimes participated in) the snickering and joking when someone we know is on the pipe or smoking ice, crack, batu, ma‘a, crystal, or whatever we call it nowadays. Our usual response is to first inform everyone we know that he’s hitting the pipe again and that he’s a mess. Next we become fixated on every bad thing that he does and blame all his inexcusable behaviors on his lack of will power, stupidity, and, of course, the drugs; we then focus all our attention on his drug problem and forget all the other reasons that make him a beautiful person. Eventually he pulls through and manages to stay clean for a couple of weeks, months, or even years before he relapses and becomes another mess. Why do we have certain attitudes about people who use drugs and who just can’t seem to quit? After all, we all continuously use drugs in some form, whether it is sugar, caffeine, nicotine, Tylenol, allergy meds, alcohol, hydrocodone (know what I mean, codeine), or even Xenadrine! Why do we consider some drugs okay and not make such a big huff when someone uses them on an everyday basis? Don’t all drugs make people act in different ways? And why do we have no tolerance for people who just can’t kick the habit? A lot of our values are shaped by our religious upbringing, the media, our culture, and education. We have chosen to degrade certain things like drugs, prostitution, and HIV, and then lump them all into one category called ‘bad things.’ The people who are associated with these ‘bad things’ are then labeled as ‘bad’ and we ignore them, despise them, or just make fun of them. For someone who uses drugs, relapse is a common thing that affects them on a daily basis. It is seriously hard to quit! And if you don’t believe me, just think about how many times you’ve tried to lose weight or stop smoking. It’s easier said than done! Yet we’re all so supportive when someone has a hard time losing weight. We keep encouraging them to try harder because they’re doing really good. But when bruddah goes off the deep end and just can’t kick the habit, we can’t deal with him anymore and we expect him to just stop. Why is that? A lot of it comes from our views about drugs and the people who use them. We rarely ever think about why someone would want to use drugs in the first place. If we understand it better, there are many reasons to use drugs, just as there are many harmful effects that come with misusing drugs. People use for many reasons: it gives you a good lift on those down days, it makes you calmer on those hyper days, it helps us deal with stress on our bad days, and it helps us escape life on our sad days. It also helps us eat better, or it helps us lose weight. Many use drugs in order to boost their self esteem or to help them feel better about the world around them. When someone hears devastating news, sometimes drugs are the only way in which they can make sense of everything. In many cases, traumatic childhood experiences such as molestation and physical abuse become a reason for people to self-medicate, helping to drown out the pain. However, when a drug is misused a person may become overly anxious, paranoid, moody (but who isn’t moody?) and many struggle with extreme depression. Their health may also be affected and sometimes it could lead to death. The media seems to be good at pointing this out and I’m sure we know all the ‘bad things’ associated with drug use. So what do we do? The most important thing is for us to acknowledge that drugs (all kine) are a part of our society whether we like it or not. Trying to rescue or condemn bruddah from using drugs only makes us feel better, and many times, it only pushes people farther away and creates walls between you and your loved one. Supporting a person’s choice to use drugs is difficult for many of us because we do not understand why people use drugs. We think that just because we’ve quit something, someone else should be able to do the exact same thing. Making bruddah feel worthless for not being able to kick the habit only adds to his and your struggle. Whether it’s weight, work, drug use, or just life in general, having someone who can just be there, often times makes the most difference. http://www.utopiahawaii.com/frame.asp Billing Coordinator, Seattle Counseling Service Seattle LGBT Commission, Lambert House Volunteer http://seattlecounseling.org/
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