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And the Band Stopped Playing

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As the beat of the music roared in my head, I looked around at the large gathering. In the crowd were some recognizable faces and others I had never seen before in my life. In the middle of the group were two shirtless go-go dancers gyrating to the heavy thumping electronic beat, drawing a large crowd of smiling men of all ages. In the audience at the bar was another group of unrecognizable faces as the free alcohol was being poured into bottomless cups. It was the Christmas season so everyone was in a festive holiday mood, and the open bar and complimentary food added to the excitement. 

This wasn't a banker's party or a shindig thrown by the boys on Wall Street. It was a party organized by GMAD (Gay Men of African Descent), my employer at the time. An NYC based agency that was in the fight against HIV among gay black men. The atmosphere could have symbolized that the fight against HIV was over, but sadly the fight was just beginning.


In the last few years, many organizations whose mission was to outreach and provide HIV prevention to the people of color communities, have either seen their doors closed or they remain open with drastically reduced funding and staffing or program cuts.  There is much speculation on the cause in the decline of financial support programs, especially to New York City non-profits working with HIV clients. Causes have ranged from racism, accusations of misappropriated funds, the shift in focus to gay marriage and an unproven perception that, since HIV has decreased in the white community, resources are no longer needed in the people of color communities.  One thing is clear, though: from a non-profit standpoint, since the arrival of HIV more than 30 years ago, HIV has morphed from a grassroots cause into a business. This business of tackling HIV in NYC has greatly affected the gay men and women of color caught in the middle of this battle. How this model came to pass requires a look at the past.


In the 1990's, many HIV non-profit agencies opened their doors to specifically service the growing number of people of color who were quickly becoming infected with the HIV virus. During this time, agencies such as GMAD and POCC (People of Color in Crisis) grew from informal organizations, meeting in free to low cost community spaces, to brick and mortar institutions. Meetings of friends, who gathered to address a common goal, were now replaced with boards and bylaws to govern how to create innovative ways to educate the target population and prevent HIV.


New ideas were created that seemed to resonate with the community's needs. Local NYC areas saw the introduction of programs such as "Brothers Gonna Work It Out", a behavioral intervention program that provides an opportunity for black gay men to explore their decision making processes related to their health; and SISTA, a program designed to increase condom use among African American women.  Social marketing awareness campaigns were born and provided a visual context for the discussion about HIV in the black community. Support groups that focused only on people of color issues emerged as discussions of racism and inequality were inserted in the dialogue. A dialogue that gay white men didn't have to address as it was insignificant in their HIV treatment.


Financial support was abundant for HIV agencies, and once simple potluck gatherings turned into black tie affairs. Awareness of agencies serving the people of color communities increased both locally and nationally. GMAD introduced Pulse, a new glossy lifestyle magazine filled with vistas of beautiful homes and quasi celebrities. Except for the few pages which addressed HIV, the bulk of the magazine showcased exotic trips and high end clothing.The magazine was introduced during a time when sales of traditional print media were decreasing and consumption of internet media was increasing. I'm sure people were wondering why a social service agency was moving into the magazine publishing business. If it was to create a cash flow independent of grants, it would have been seen as a great move.  But the opportunity to generate revenue was lost as the magazine was offered free.


When it came to visual social marketing, young cute boys dominated the advertising of HIV agencies, as if to communicate that these young men were the only victims of this deadly disease. The sad fact is that they were not the only representation of HIV. According to recent statistics, HIV has greatly impacted the entire black and Latino communities, especially in major cities like New York City. The CDC reports that in 2011, 23,168 people of color in the United States are diagnosed with HIV and the age group affected the most are those between 40-49, yet the age group is not reflected in outreach and prevention efforts. Unlike the young men represented in HIV advertising, most individuals with HIV are not wearing designer clothing nor do they have a reason to smile. Most are classified as low income and may have very few resources. They frequently receive substandard health care and live in fear of HIV stigma and the consequences of people from their community learning about their status. In addition they are faced with other societal barriers, such as poverty and crime. For some, HIV status is a low priority when more immediate concerns, such as surviving day-to-day dominate their lives. Yet somehow these individuals have become the forgotten, even by the agencies which were formed to meet their needs.


In NYC, the party continued. GMHC (Gay Men Health Crisis) held star-studded fund-raisers, which gave a stage to the growing Ball scene. Described as an underground LGBT sub-cultural communal event in the United States in which people "walk" (i.e., compete) for trophies and prizes. They swarmed in large numbers to the welcoming atmosphere of community. Not to be outdone, POCC held well attended, extravagant gay Black Pride celebrations at the city beaches.  Excitement was contagious each year with the inclusion of A-list celebrities headlining the evening concerts. One year, it was rumored that Janet Jackson was to be extended an invitation to perform.


Big money was flowing and it seemed like the agencies serving the community had plenty of it to spend. Everything was big-perhaps to reflect the spirit of New York City. Yet, from an outside perspective, it appeared many of the functions were less about addressing the growing HIV epidemic and more about egos. Often times it seemed no expense was spared to top what was done the previous year. The events were getting bigger and bigger along with the increase of infection in the black communities.


Criticism was even directed at the city and the financial gains one could receive for having a positive HIV diagnoses.  Although the requirements have changed, simply being positive in NYC allowed an individual to obtain housing, health care and a monthly stipend. This appeared to be beneficial especially for those who were homeless and had little resources. A story in OUT Magazine featured a story of men who expressed how having a positive status, advantageous to their way of life.


The growing practice of HIV agencies in NYC to entice prospective clients with monetary incentives became the norm. Agencies discovered it was effective at bringing clients in their doors by enticing clients with gifts such as movie tickets, gift cards and subway passes. As a result, attitudes in the community started to shift. People who wanted to learn their HIV status now demanded to receive compensation for doing so. An informal client information network was formed allowing people to find loopholes in a system that didn't properly track duplicating clients. This allowed an individual to receive incentives at multiple agencies around the city for taking HIV tests and receiving incentives, despite knowing their HIV status. It wasn't unusual to have a person call GMAD and rather than ask if support was offered for those with HIV, the question was focused more on what incentive was offered. Oftentimes the financial incentive was the motivation driving people as opposed to the sense of well-being and personal comfort derived from knowing one's health condition. This exploited opportunity made it unfair for the people who were truly in need of incentives provided.


Yet agencies didn't change their practice because the number of client contacts was becoming increasingly important. Non-profits, accepting funding support from the NYCDOHMH (New York City Department of Health and mental Hygiene), were obligated to deliver a certain number of clients each quarter. Targets had to be met or agencies risked a reduction in future funding. These funding criteria created a system of agencies in competition with each other to bring in as many people as possible by any means necessary. Although New York City is vast, the many HIV non-profits often serviced the same individuals who went back and forth to the agencies. And with limited HIV funding, agencies, instead of working together, were in direct competition with one another over the small pool of funding. This created a lost opportunity of collaboration and duplication of services.


Meanwhile, the rates of infection in the black community continued to rise. But the face of HIV also was starting to have a different look. Straight women and elder populations, two groups that were afterthoughts to many agencies were beginning to quickly become affected and infected by the HIV virus. Despite the rise in exposures they were often the last ones asked to sit at the table (in deciding how to address HIV), if they were invited at all. Agencies that worked exclusively with gay black men also struggled with how to respond to rising infection rates in the growing transgender community.  These agencies often unsuccessfully used organizational models suited for the gay black men instead of creating a new framework designed exclusively for the transgender community. Providing a safe space for transgender people was no easy task. The transgender community has historically always resided on the fringes (or just outside the edge) of the mainstream gay world and some gay-focused agencies were having internal difficulties in accepting the group. 


However, the party was winding down for many HIV agencies. The celebrity hosted fundraisers were slowly becoming less affordable. And the agencies' one hundred percent reliance on government grants resulted in many missed opportunities to obtain more unrestricted private funding sources. These same agencies did not have the foresight to set aside capital obtained from their years of previous well attended events.  Instead additional money were directed to ever increasing staff and consultant salaries along with moves into more prestigious but unaffordable office spaces.


Non-profits combating HIV was now in the position of keeping their doors open as those looking for services were next on the priority list. To remain sustainable, non-profits started to change their mission and work to meet the changing need of funding. Innovation was replaced by outdated approaches. Risk-taking was seen as a bad business strategy because agencies feared losing funding if they were unsuccessful.   


Ultimately, under the scrutiny of accountability and inadequacies in prevention programming, increased oversight by government grantors revealed the widening cracks in the walls. In one such example, the executive director of POCC was investigated for improper use of city funds. According to published reports in Gay City News and other media, the POCC executive director at the time spent nearly 80,000 dollars of agency money on personal expenses, including numerous round trip flights to Los Angeles to visit his partner. There were also accusations that agency money was used to bail friends out of jail.  And the most damning allegation of all? The infamous "POCC casting couch'' for those looking for a job at the agency.

Funders began to realize that they had not provided sufficient oversight. Following an investigation, the ED was fired, the agency (which had a two million dollar budget) had its funding pulled, forcing it to close its doors.  And a much needed resource for people in the gay black community was gone. Next, the spotlight was pointed at the New York State Gay Black Network.  Shortly after, an extensive audit uncovered unaccounted for city funds, the agency was de-funded and also forced to close its doors. The next major agency to be affected by the increased oversight was the Bronx Gay and Lesbian Center. It was forced to close after the agency's former chief was charged with stealing $338, 000 dollars for personal use, including vacations and dog walkers. Now many in the Bronx, especially LGBT youth of color, are left with few resources.

The Band Stopped Playing

As I made my way to the window of the holiday party overlooking the Hudson, I saw my reflection and knew, as a gay black man living with HIV in NYC; it was the end of the party. When it came to HIV, the priority was no longer there. Gay marriage was driving the discussion and money was shifting in that direction. Based simply on the shifting focus of resources, you would think the battle to end HIV was won. Sadly, though, it remains a critically important health issue in certain communities. But instead of preparing for battle, here we were celebrating with rivers of alcohol flowing and unlimited hors d'oeuvres to consume.


Perhaps it would be the last lavish celebration thrown by an HIV agency. The focus was now squarely on us at GMAD and the deals done in the dark that were now coming to light. The community was learning that staff was not getting paid regularly but were told to keep quiet about it. Employees, once having the benefit of their payroll direct deposited, were no longer available as it was easier for GMAD those weeks when it was uncertain if payroll was going to be met. Community reaction to both GMAD's effectiveness and its predicament was mixed.  Some supported the agency and others felt the leadership was no longer in tune with the growing need of the gay black community.

As the party ended, GMAD's own crisis loomed. The director was questioned about missing donated funds, followed by an unfavorable news story which resulted in his resignation. Since then, GMAD has been in a fight to keep its doors open in the midst of recent cuts to programming and funding. The once great agency, which in the past could afford to rent the historic Apollo Theatre for fashion shows, was now trying to figure out how to pay the rent.

The party is definitely over and the band has gone home. In its place, a new approach on how to confront HIV is developing. With new leadership at mentioned HIV non-profits, there are new opportunities to refocus on the communities that were briefly ignored. There are prospects to explore 'out of the box' fresh ideas, on how to tackle a disease which continues to ravage certain communities. Perhaps this is a chance to revisit grassroots efforts, a time when missions were driven by the work and not by the funding. When HIV was about people and not about business. Whoever is in charge will have to be creative. Have the ability to reach out to the forgotten community of women, elders and Trans. In the process restore the faith within the community that HIV agencies in NYC have their best interest in mind.

Funding that was once easy to obtain is now scarce. And the funding which is available has shifted to a medical model of living with HIV as a long term disease. Efforts to develop and create innovate ways to reach those who are hard to reach should be explored. And if successful, the onus of the community will be to hold agencies accountable and not celebrate as if the fight against HIV has been won.  

 Additional links:

Story on POCC

Story on GMAD

Story on Bronx Gay and Lesbian Center



Aundaray on: On the web

The Graying of HIV

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 I was recently asked to sit in on a HIV support group which is targeted to men 50 and above. I felt this would be a great opportunity to listen in on a community I would eventually be joining. The men were older than the 50 mark and ranged in age from mid to late 60's, so in a way I felt I wouldn't be able to identify with their stories. As they spoke, not only did I identify but also realized I would soon be joining a community I have come to name the "Grey Invisibles".                                                        

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'Grey Invisibles' is a tag I created to identify gay seniors who fly under the radar especially when it comes to HIV prevention and advocacy. It may seem phrasing a community the color 'grey' is stereotypical, yet when we reference our elders, the color grey is mentioned. Truthfully, our elders are anything but the dullness of grey and are more in aligned with the colorful life they bring to the world.   

Sadly when it comes to seniors, especially in the gay community, they are not asked to sit at the table. It's often our gay elders who are seen as no longer having value and although their work in the community is appreciated, they're told to now step aside. When HIV statistics are branded about, a large focus is placed on the young gay community, justifiably so. Yet those same statistics report how gay seniors are facing the same crisis as rates of HIV among seniors are increasing. According to data from the CDC from 2008-2010 it shows that there has been a steady increase in HIV infections in older Americans, 65 years old and older. About 10-11% of newly diagnosed US HIV cases per year occur in older adults. That comes out to about 5,000 to 6,000 new cases of HIV in this age range per year.

The men in the HIV support group highlighted how their lives are impacted with a HIV diagnoses. Their stories are similar struggles the young generation communicate themselves. If you listened you would hear the same difficulties in forming relationships and the fear of rejection based on their status. Tales of managing their medication and the sometime complexity it presents. You would be privy to conversations of men wondering what the future held for them as a person with HIV. And yes, you would hear about love and the desire to still be wanted. To be embraced and share in the warmth of someone special who accepts you, HIV and all. But because they are 'Invisible' their stories falls on deaf ears.

What we fail to realize is the seeking of affection never ends and because of this unmet desire, the elder positives find themselves part of a growing HIV epidemic. Partly because today HIV prevention efforts don't target the LGBT senior population as a belief is held seniors are not participating in sex. Not only are seniors having sex, they also have multiple partners which calls for prevention efforts. In addition most gay seniors receive inadequate health screening for HIV if they receive it at all. This is compounded by the discrimination senior's face in the health community based on their sexuality and age. 

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To make gay seniors visible and part of the HIV discussion, some key steps can be made:

1. Create visual HIV/Prevention messages targeted exclusively to the elder community

2. Enforce inter-generational participation within HIV agencies and start inviting the aging community to have a seat at the table.

3. Stop placing gay seniors as an afterthought and include their voices at the beginning of HIV planning initiatives.

4. Recognize elders are continuing to have sexual relations and need the same prevention tools available to the younger generation

5. Provide education directed to health officials to have a greater understanding of the LGBT aging population along with the challenges people of color aging community faces

As stated before I and others will soon be considered one of the aging communities. I know with all my contributions within the LGBT community, unless we start including our gay elders, my voice will be irrelevant. I have consistently worked to have inclusion of elders when it relates to my work in the LGBT field. Recognizing the silence they face I challenge the younger community to not simply respect your elders but also recognize they are worthy of our continued attention and most importantly, they are still very much a part of our community.

Although I gave some tips on how to include gay elders in HIV prevention, are there any efforts that can be highlighted. Love to hear what is working.  



Aundaray on: On the web

Help Wanted: Unemployment and HIV

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Times are tough in this country for everyone (well maybe not for the 'one-percenters') but the rest of us continue to endure a tough economy. Living with HIV can sometimes be difficult enough but the added uncertainty of unemployment sometimes makes it seem life is working against you. I lived through this emotion myself as the organization I worked for faced decreasing revenue. I was a great performer but when cuts had to be made, my position unfortunately was affected. Although I'm a resourceful and determined person, I didn't know how I was going to get through the storm. This new territory didn't have a road map or clear directions on how to navigate it. I've always had a job since the age of 13 so I didn't know what to expect. 

Questions racing through my head were scattered and came from a place of fear. Will I be able to survive on unemployment? Will I have to deplete my savings? What will people think of me? Am I failure? Will I ever find another job? How? When? Will I only be able to afford second hand clothes? Oh yeah, what about my HIV? Yes for me, my health which is my top priority, all of a sudden fell to the bottom of the list. Facing a new first of living with HIV and being unemployed, I didn't know if or how I could manage?

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When you're suddenly unemployed your HIV care can rapidly become a lesser significance as you shift into survival mode during your jobless state.  As much as I take care of myself, I slowly fell into the trap of not properly handling my health. Between looking for a new job and sending out my resume I unknowingly started to develop bad habits.  I began to accidently miss medication dosages or taking them at the wrong time of day. My physical activity suffered as I didn't have the motivation to work out. And if I went, my mind was so distracted with my jobless situation; I would put in half the effort.  At the time I failed to realize the impact it would have on my health, but as time went on I started to see the negative results of my inactions. Instead of gaining weight I started to lose weight as the stress started to take its toll. It was hammered home to me when I visited the doctor and he informed me my t-cells were slightly lower since the last time I came in.

Sending resumes after resumes I thought the phone should be ringing off the hook. But it continued to give me the silent treatment. Having a hopeless feeling, I would sometimes tell myself I needed a nap which would last for the rest of the day. Or sometimes I just wanted to crawl back to bed and pull the covers over my head and ride out the anxiety wave.

My fallback in life has always been my support system yet being unemployed; I shut everyone out on my current circumstance. Shame allowed me to not inform my friends I didn't have a job. I think my shame, sometimes so prevalent; I even gave power to what strangers thought about me. Wondering if they were questioning why I was home and not at work. At the moment blind to the fact I was not the only able body person who was home during the work hours. Rather than share the news with friends and family, I painted a perfect picture of bliss as I pretended everything was okay. To not share that aspect of my life meant allowing myself the chance to endure my situation alone.

The thought of receiving unemployment was humbling as I saw it as a handout. When I realized I was simply taking advantage of all the monies I placed into it when I was employed, I stopped myself thinking in such a negative way. I was also fortunate as I'm currently on my partner's health insurance so I knew my health coverage would be uninterrupted. For others who have HIV, they may not be as fortunate as they are now managing their HIV status with no health coverage.  They may also fall into the purgatory of the twilight zone where they make too much money for city services yet don't have enough money to obtain coverage through COBRA. For some with HIV, HASA (HIV/AIDS Services Administration) used to be an option but with recent changes, one has to have a certain t-cell level to be approved. You have to find a solution fast as once you begin to collect unemployment, the clock starts ticking. It's for a short period of time and because Congress is in a stalemate, there's no extended benefits. I ask again, how does one manage?

Although being unemployed can be a temporary situation unfortunately your HIV status isn't. Despite your current situation you must still maintain a lifestyle which doesn't allow your HIV to rear its head.  I'll share what worked for me as I faced being out of work and giving attention to my HIV status.

1)      1) Create a schedule- If you're a structured person, having free time will be one of the hardest things to deal with. Suddenly having no structure will leave you feeling like you have no purpose and make remembering important details, such as taking your HIV meds on time, difficult. Because your HIV medication routine is on a schedule it now can fall to the wayside which will have an effect on your health. Irregular dosages can result in decreasing t-cells and/or you could become resistant to your medication.

 Advice - As much as you can, maintain a schedule similar to your job. Go to bed as you usually do and in the morning get dressed, avoiding the desire to stay in your sleepwear. You still have a job, which is to find a job and approaching a job search with a focused mindset will be beneficial. Allow yourself to clock out of job searching the same time you would if you were working. Your life shouldn't be a 24 hour search for employment. This will help you develop a routine which will involve the integration of your medication. A consistent schedule will assist in not missing dosages.

 

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     2)  Get Outside- While conducting your job search, make a full effort to not do it at home. Along with distractions, getting out the house helps with any onset of loneliness.  For me, being in a social environment propelled me to not dwell on not having a job and instead I gained focus in finding a new job. The disadvantage of staying in your home is it provides plenty of time to develop a depressive mood. HIV and depression is a bad combination as it affects not only your health but if you've struggled with addictive behaviors, they can resurface and be acted on. Isolation can also be a negative contributor to your health and should be avoided.

Advice- Try to find a coffee shop or library where you will feel comfortable to job search. If it's warm and you don't need wireless access consider creating your cover letters in the park. The key is to create a separation from your home so it doesn't feel like a workspace. Allow yourself to have lunch dates with friends. Continue to be sociable and stay connected. The goal is to deter depression and not allow loneliness to be your norm.

 

3)      3)Stay physical- Staying healthy is important, especially when it concerns your HIV status. Staying fit will help reduce the stress of not having a job and contribute to a better overall well-being. Along with holding depression at bay, it will also encourage you to not allow your healthy diet go amiss. The benefit of working out increases a better sense of self and contributes indirectly to your t-cell/viral numbers.  

 Advice- Don't consider going to gym or working out a luxury.  Staying physically fit is an important part of your life and helps to reduce the stress and anxiety of being unemployed. It also has the benefit of giving you a greater positive outlook not just on your job search but also health.

 

4)      4) Don't keep it a secret- We often tie our personalities to our job, so when we leave a job it usually attaches itself to our self-worth. When you begin to accept your job is what you do and not who you are, you'll have a lesser feeling of shame. Shame can prevent you from embracing your current support system and have a negative impact on the care of your HIV. It also stems the opportunity to network and access individuals who may have knowledge of other employment opportunities.  The key to finding a job in today's market means networking as the old days of sending in resumes can result in failed efforts. Use your friends and online mediums such as LinkedIn to its full advantage.

Advice-Reach out and be honest about your situation. Create two separate groups, one can help support you with your HIV and emotional care and another group can help in your job search.  Everyone doesn't have to know your situation but the more people who know, the more who can assist you.  Also share with your doctor. You may endure stress which will probably affect matters such as sudden loss of weight and/or appetite.  In addition if you're now dealing with depression, a proper temporary treatment plan can be initiated.

There are other areas of being unemployed and having HIV which hasn't been fully discussed such as loss of medical coverage and tips on finding a new job in this technology age. I would love to hear from others who have HIV and if they have endured unemployment or are currently unemployed and what has worked for you.

I'm happy to report my journey of unemployment is over but nothing is always for certain. So even if I find myself without a job again, I can fall back on my tips and still come out a success. I can also find comfort of knowing after my recent experience I have to ability to not let any situation alter the way I approach my health. That's a job I can't be fired from.

 

 

 

 

 




Aundaray on: On the web

Coming Back From Zero

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Medication adherence is a commonly used term to describe the ability to consume your medication at the appointed time and the right dosage. Although I was fully aware of this phrase the meaning didn't have an impact on me until I witnessed the consequences of not sticking to a consistent regiment.  You can say I was provided this lesson when I skipped too many dosages and eventually found myself with t-cells not too far from hitting the single numbers. As an African-American I was in a group of those who didn't and couldn't adhere to medication for my HIV. Seen as one of the biggest obstacles to helping one live a healthy life, it's also one of the largest barriers for many and at one time also me. As I have progressed and lived a healthy life with HIV I still have to remind myself the lessons I learned by being non-adhering.  

I was never a pill person. Even before my diagnosis I would have much rather rest my body than take an aspirin for my headache. The pill also represented a weakness and that I needed assistance. I always considered myself a strong person and could handle my own. I wanted to heal without the aid of something made in a lab. So when I was diagnosed with HIV I knew it was going to be a struggle for me. It was one of the reasons I didn't commit to seeing a doctor on a regular basis. Since I wasn't placing myself on pills what need was there for a doctor. All he was going to do each visit was to confirm that I still had HIV. I told myself as long as I eat healthy and take care of myself I can manage on my own.

I knew I was playing with my health but the idea of swallowing a pill for the rest of my life was not appealing. I was only 19 when diagnosed so that meant a long road ahead.  I was also concerned about what any long term damage I would do by taking pills for so long. Would my body be able to handle it and would my liver or other organs pay for my decision? I wasn't a conspiracy nut like some people are. I didn't think the meds were designed to harm me or make it so I would never get better. I simply felt I didn't have the will or the desire to take medication for a lifetime.

My change in thinking came when one year I was constantly sick. I started the year with bronchitis and ended the year with bronchitis. It was then I realized my method of avoidance wasn't working. My doctor who I was always running away from confirmed it for me when he told me that my t-cells were starting to dip below fifty and heading to zero. Someone without HIV has a t-cell count of 1500 and here I was on my way to zero. That's when the fear set in. In a weird way it was okay for me to have HIV as long as I didn't have a diagnosis of AIDS. AIDS was for others who truly didn't take care of themselves. AIDS was Rock Hudson with sunken skin and hollow eyes. So I was okay with HIV, but my reality was realizing since my t-cells had dipped below 200 I was now classified as having AIDS.

I had AIDS.

I was defeated and felt like I was on my final chapter of life. I felt that once you had the scarlet letter A scribed on your records that there was nowhere else to go but down. I gave in to the doctor and stopped fighting him. I allowed him to prescribe me HIV medication. It was only a square piece of paper he handed me, but it felt like an anvil. It felt heavy. But I also told myself this was my life preserver from sinking further than I wanted to.

The kaleidoscope of color and sizes intimidated me. The instructions were just as puzzling. It was a brain teaser as I had to remember to take some pills twice a day, the others once a day and the other with food one hour after eating. It felt like the math class I always skipped when I was in school. I didn't know it was going to be so complicated. Then there was the matter of how did I keep it hidden so if someone visited my home they wouldn't discover my secret. This in itself was another reason I didn't want to be placed on meds.

My will was tested when the side effects came. I heard horror stories from others sharing their experience, which added to my reluctance to taking medication. People shared stories of nausea, cramps and constant diarrhea.  In the scheme of things I got off pretty lucky as the only effect I had was loose stool. Eventually that went away and so did my opposition. I was starting to feel better and my doctor confirmed it for me many months later when I went in for my lab results. My t-cells were inching up. He was still concerned why my levels were rising so slowly. When he asked me if I was missing dosages I looked him in the eye and lied. I said no.

The truth was I was taking many holidays. Holidays refer to a period when you stop taking medication. My holidays were scattered and incomprehensible as routine involved me taking just the morning dosage and missing the evening or vice versa. And some days I just wouldn't take it at all as I was tired, out later than I thought or just didn't feel like making the effort. My unspoken reason was suffering from an untreated depression that made adhering to my medication unrealistic.

My punishment? I eventually became resistant to not only my medication but to others class of HIV meds. There was nothing the doctor could do for me as anything he prescribed would have no effect. My subconscious spoke to me and simply said, "Well this is a fine mess you got us in" To add to my bad news  I was reprimanded by a nurse who had befriended me and told me she would rather have me not take the pills than to take them irregularly.

My stubbornness was affecting my life and although I had the tool I was being reckless. I had to get my act together and if there was something that can help me, I should stop complaining and do what I needed to do.

Medication adherence is an important issue when discussing HIV. Resistance to taking HIV medication can have an impact on your life and health. The discussion should be based on the fear people have and how to provide reassurance and education on the importance. I would state that taking medication is harder than having the virus as the HIV can remain static and not affect your day to day life but medication is an action that requires thought and commitment.

My advice to anyone having inconsistency it to first realize you're playing with your health and when that realization hit you, find a way to create a realistic manageable schedule. Look at your life and see what's blocking you. For me it was the depression that I had to address and get it out the way. Also talk to your doctor and come up with a regimen that works for you. Since my diagnoses new pills have been introduced and can afford someone to take one pill.  And any experience of side effects should be quickly discussed with your medical provider as they want to see you healthy and won't keep you on a pill that's making you sick and causing you to miss dosages.  

I was fortunate when medication was finally introduced that I could take. I felt that this was my second chance to get this right. I've since dedicated myself to being devoted and my reward is seeing my t-cells climb. Where I was close to zero I can now say that I'm at a healthy number of 632. That's a long way from zero. Although I take the daily medication I still don't lose sight of my ability to take care of self, it's just that I have a little help. And that's okay. 



Aundaray on: On the web

Springing into Love

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The arrival of spring signifies many things. It means out with the old and in with the new which can involve tossing out old clothes, shedding winter pounds or finally putting the television remote down and heading outside. This is also the season when we're open for something new in our lives. We're looking for love.

But how do we find love?

This is one of the most difficult questions in the world for many to answer. Some have it easy while others may resort to extreme measures such as giving their heart to someone unworthy; settling for whoever comes along first or attaching ourselves to another so mismatched just to change our relationship status from single. I'm going to add another layer of difficulty. How do you find love when you're HIV positive? How do you make the effort, despite what you have inside of yourself, make that move to find someone? This question is an important one as love is a universal feeling we all want to experience. Finding someone to love is a task which can seem insurmountable in any circumstance. Adding the stigmatization of the disease and feeling less valued, makes one ask; why bother?

I speak from experience as I've lived with HIV for the past 28 years. When told of my status, the two things I immediately questioned were; when I am going to die? The second was, will anyone ever going to love me again? At the time how people viewed HIV was entirely different from today. HIV was such an unknown entity in 1986, the year I learned about my status. There was such a huge public fear which resulted in ostracizing people from their homes and sometimes communities. My fear was wondering if my HIV status was making me next on the list of a witch-hunt. I decided I didn't want to be emotionally hurt and the best way to avoid such pain was to not let anyone in. My only option it seemed was to build a wall around my heart. A wall so strong it prevented people discovering my HIV status and also had the ability to keep anyone from getting close.

As the years past I was finding out hiding behind this wall wasn't so fun after all. Yeah no one could do harm but at the same time I was lonely and miserable. Without realizing it, depression had made its way through the cracks and kept me company. Was I ever going to find love?

Luckily times have changed and many living with HIV negative now find no problem loving someone with HIV based on an increase understanding of the disease. I'm a personal witness to this as I'm now in a relationship with a person who is HIV negative and loves me unconditionally. I would never been able to meet this person if my walls had remained up. By removing myself from a place I thought would keep me safe, my reward was finding love. Placing a wall up is easy, tearing it down is hard. To receive love one must learn, brick by brick, how to step into the faith someone is out there waiting.

These are some suggestions which helped me tear down my wall

1)      Do it for you. The first thing one must learn is to give permission to love self. If you're moving from a place of isolation, don't do it for anyone else but you and your happiness. You will never learn happiness if all your actions are simply meant for the benefit of someone else. Know you're worthy and embrace the feeling. Like the commercial states, 'Love the skin you're in.' It's so hard for someone to love you when you don't give yourself the same love-so start with you first.

2)      Stop seeing yourself as a negative. When we look in the mirror we're always looking for what's mistaken. It may be a hair in the wrong place or a glance to see if our waistline has expanded. No matter the reason, we're looking for the bad. And sometimes we look in the mirror an seeing only HIV looking back.  As a task start to look in the mirror and find all the great things about you. It doesn't have to be physical attributes but also features of your personality people can't see. Discover affirming words about yourself and redefine who you are. Embrace those words and the image looking back. So no matter what happens to you during you know how wonderful you are. What are your words of affirmation?

3)      Accept you have HIV. I know this may not make sense but sometimes we're in so much denial and won't accept our HIV status. I used to stick my head in the sand and act like it didn't exist. It was my own showing of shame. By coming to terms with your HIV you can start to move forward and make the positive changes which remove you from the darkness of denial and place you into the light of truth. It's hard to start any relationship when you can't be honest with yourself. Shame is such a strong destructive device which can hold the strongest person back. For whatever reason you are HIV positive but you're still a good person. Don't carry shame based on your situation; you're stronger now and can live the best healthy and happy life possible. This is not minimizing the impact of having HIV but to create a greater awareness your identity is not a three letter acronym.

4)      Don't let past rejections make you one who rejects- When we have someone walk away from us for whatever reason our natural response is to close ourselves off. We develop a mantra which states, "Never again". When you do this the other person win as they go off and find happiness and you're left alone with resentment. I personally have experienced so much rejection around my HIV status, it took me a long time to realize it was never about me but spoke more to the other person. Flip the script and realize if someone doesn't want you for you, they are intimidated by your strength. If anyone rejects you, they've just made room for someone who loves you to fill. This isn't a mind game but something you have to believe. Everyone we meet is not necessarily meant to be in our life no matter how compatible. Don't morph into the one who now rejects. Always strive to be the one who loves.

5)      There's no King Arthur. Sometimes we wait for the person who has the strength to pull the sword from the stone and tear down our walls. You will be sadly disappointed and remain in a place of loneliness if it's your litmus test. While waiting for the shining knight you're probably missing out on the many suitors who have sincere attraction to you but because you made loving you so challenging you're missing out. You've created a long laundry list of qualities you don't possess yourself but expect others to have. Be realistic and accept sometimes your Prince Charming is right in front of you.

6)      And last-There's not an app for everything. I don't care what anyone says but apps like Grndr and Adam4Adam are strictly for sex. Period. If anyone says they have found true love they are not the norm. Solely depending on these apps will set you down the long road of bitterness as you'll become convinced all men have the same characteristics on the mobile app. Too many of these encounters; good or bad, you'll develop the mindset that everyone simply want sex or start believing any form of a relationship is superficial. What happens next? Yep, up goes the wall.

 

Declare you're ready. You're ready to tear down your wall and find the relationship you're meant to have. Finding love won't happen overnight, or the process of tearing down your defenses. But the reward is so great when you finally say to yourself, I'm ready.

 

As I enter my 15th year with my current soul mate I'm so glad I didn't deny myself the ability to love. It took a deep understanding of my life with HIV but in general it took me not hiding behind a wall. Experiencing self-love stopped blocking the full life I desired and helped me to find love.



Aundaray on: On the web

Family Secret

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One of my sad truths that I don't really share is my relationship or perhaps my non-relationship with my family. Before I begin, I have always had a certain feeling about people who in the public drag others on social media, so I state that is not my reason. Instead I use it as a frame to share how by not being close to family, matters such as my HIV status comes into play.

With the recent passing of the holiday's it has now become a norm for me not to receive a call or any type of acknowledgement. This past holiday wasn't different and instead of being sad I reasoned that at least they were being consistent. The one thing that did briefly come was the sadness that despite thinking I was close with everyone, the feeling wasn't mutual. I know I could have simply picked up the phone and reached out but frankly my whole life that's what I've been doing. I'm the one who has made the call or showed up unexpectedly at the front door to say help. I'm the one who has come running when there was a need and being across country I continued to be there physically. So although I could have called you finally reached that point of not wanting to be the giver. Even recently I received an email from a family member and thought maybe they were catching up. Instead it was the usual reason for reaching out, for financial assistance. It has worked in the past as I reasoned by helping they can see I want to be part of the family. It took a while for me to realize money doesn't buy love

In the early years of having HIV I was still alone in the battle despite them knowing my status. I remember doing a test where I stopped reaching out to them and wanted to see who would reach out knowing I was struggling with this new virus. I was the one who was surprised as there was no communication from any. It was that 'Wow" moment as I thought, "I could be here on the floor unable to get up for any reason and no one cared, at least my family". It's hard to wrap my head around it as when we do see each other in person we're having the greatest time, with good conversation and filling the room with laughter, but once we part the silence fills the space and goes back to being strangers.

I once asked my sister why she didn't reach out and she let me know that they expect me to since I was so good at it. It was then I realized it was my job and I shouldn't expect the feeling to be reciprocal. For that reason I now keep my life with HIV quiet as I feel they won't be the support I need although knowing with their support it'd be a great addition. And not that I want them to simply see me as the big/little brother with HIV, but knowing it's part of me I want them to be there when I want to share.

Without sounding like I'm telling anyone what to do, if I could give advice I would say don't try to use your HIV status as leverage for someone to love you. I say that as knowing we weren't close I thought by letting them know my big secret that it would draw them in. I built myself up to say this will be the impetus for change. Scary as it was to share it was for nothing as I didn't get the results I was looking for. My lesson was using my status as a tool.

Living with HIV a person sometimes wants to use it to create that closeness. In my case it was with family. For others it may be a partner who shows little interest in you or it could be your way of trying to save a relationship that was never there or because of your denial, was over a long time ago. It also has created in me a song that says, 'I don't need anyone'. Even though I am now partnered I still find myself in moments where I feel like an orphan and don't want to depend on anyone. Having HIV this is a bad idea as we all need support but you can't help going to that feeling of being a loner after all it is safe and you won't get hurt...again.

I don't want to say that my relationship with my family is over but the truth is the truth. If they didn't talk to each other maybe it wouldn't hurt as much but knowing among each other they are a family and it's just me who's not in the loop is discouraging. In sharing this I'm not hoping to create something that is not there. I'm also sure I will get advice saying I don't need them or family is what you make with strangers. I know that all to be the truth but there is still those small quiet moments when the hurt peeks in the back door and before the hurt makes itself comfortable, you close it tight again.

So that is my story and as I continue my life surrounded by people who love me instead of holding out for arms that are not there for me, I'll embrace the ones that are there. Even with my struggles with life, and that includes my HIV status, instead of being bitter I hope they know despite current circumstances I love them. And perhaps this is my way of reaching out as it's my job to do. And in my open honesty I can make peace with my family secret.



Aundaray on: On the web


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