Wed. January 7, 2009
By Bill Pritchard
The LGBT Community has a very large debt of thanks to Jay (Not his real name) for his transparency and honesty in showing us life with HIV!
A lot can be learned from Jay's story. We see what we can do to prevent HIV. We see that we can live with the disease. We also see many burying their knowledge away; thinking that "it won't happen to them".
The truth is HIV can happen to anyone of us! And, those with HIV are not immune from other; more deadly strains of the disease, simply because they have sex with other HIV infected individuals.
In short, we can't say that we don't know anymore. Jay has vividly shown us that it's time to take charge of our lives, sex, and ultimately our hearts!
To that end, I am posting the whole series here today. Pass it around! Give it to your friends and family to read. Let's all read it and relearn once more the difference of healthy living.
AIDS: The beginning of life
Not long ago I was having a conversation with a friend of mine over a glass of wine. He's a server at one of my favorite Lakeview restaurants. We will call him Jay. (Not his real name) Like many in the gay community, Jay is the perfect host and always has a story to share. On this day, Jay confided in me with some information. Life changing information!
Often, I've been lucky to be trusted by people with extremely confidential news. More than often it's been from folks that I don't know that well. This was the case with Jay. He just blurted it out! He was HIV positive. At that moment my life honestly stood still. Right at that instant I said to myself, "Bill you need to listen carefully and reassure him!". I made the effort to really listen to Jay and then comfort him that he could trust me with his news.
Can you imagine receiving that news from your doctor? I can remember when our family friend Ned Behnke was diagnosed with AIDS. I was young, but he was the first person that I knew with the life altering illness. Ned was an amazing person. He taught the deaf students at Cornish College of the Arts in Seattle and his legacy continues to this day.
For 28 year old Jay, this news was all still so fresh. We're talking a few weeks old. I could tell he was putting on a brave face, but I knew inside he had to be really scared of the unknown. Here he is, a young man, and his life has been forever changed. As I listened to Jay; one question came to my mind for him. Finally, when the moment was right, I asked, "Do you want others to know about you?". He thought about it a bit and then said something so kind and gentle, "I want to make sure nobody else has to go through this!". With that came the idea for this interview.
This will be a honest interpretation of life as a person with HIV. It is real, dirty, and transparent. I share the hope that Jay does; that it will change the course of those reading it. In honor of December's World AIDS Day I give you Jay's story:
How did you live your life before you knew you were positive?
To be honest with you I was a complete mess!! I was going out on average four to six nights a week. I went on a vacation in the summer of 2006 and when I got back from the trip, I continued to party and got into this horrible routine of drinking and drugging.
I wasn't taking anytime out for myself; to do the simplest of things; to live a responsible life. I was late on all bills. I cared more about being out in the scene than how I was going to eat the next day. I was really bad off. The only thing that made me feel any better the next day was to go out and have a drink and be social. It made me feel better to know that I was a popular person. People expected to see me out and to be one of the people in the crowd that helped make the party happen. It is very addicting, just as much or if not more than drugs and alcohol can be!
How old were you when you first had sex?
Well it depends on your definition of sex. My first time of anal intercourse was when I was 19. First time I fooled around with a guy, was when I was in the fourth grade. After the first time of having anal intercourse; whenever I would have sex with someone, we did it all. It is no secret that I have dipped my hand in the cookie jar a Lot! I have probably been with over 300 men; if not more. Not all of those experiences resulting in intercourse but probably a good 2/3 did.
Did you test the limits on how far you could go without using protection?
It's kind of funny I was very good about practicing safe sex for many years! It has only been in the past couple of years that I really started taking big risks with my sex life. I would say that 99% of my sexual encounters; I was drunk or high, or both. My drugs of choice were cocaine and alcohol. Every blue moon I would dabble in crystal but that was never my major vice.
Did you think that AIDS would happen to you?
I always knew there was a chance, of course, but a lot of time I dismissed that fact when in the act. It was easy for me not to think about it, and continue with accomplishing my goal, getting off, but I attribute that mainly to the alcohol and drugs. I let drugs overtake my mind and interfere with my ability to make good decisions; not just with sex, but with ALL aspects of my life. I got to the point of not asking the men I had sex with if they were positive or not. After my almost ten years of being sexually active, my experiences concluded that most guys rarely asked themselves, so I got in the habit of not asking either.
Do you look back in regret?
I try my best not to live in regret. The first thing that a fellow HIV infected person told me, the day I found out, was that half of the battle of staying healthy in the future was a healthy mind set. That person was my nurse. He let me cry on his shoulder for a good 15 minutes. So, I have forgiven myself and do not regret what happened.
It's crazy to say this, but I am now living healthier than I have in years. HIV was a horrible wake up call that stirred this inner fire in me, to get to the root of why I let my life get to where it had.
To anybody that has been recently infected, I would say, don't be scared. Hold your head up high, and start to immediately educate yourself on how to live with this chronic illness. It fucking sucks, but it doesn't have to be a death sentence anymore. It is definitely serious and needs to be understood thoroughly to continue to live a long life. That includes, medically, mentally, and physically! I've learned to do the hard work in living healthy or else suffer a long and slow living death.
It's all incredibly overwhelming, but we shouldn't be afraid to ask for help. That is something I've have learned. The state of Illinois is incredibly rich with resources to help those in need. There are people and Organizations that are there for you 24/7. Don't be afraid to ask for help!
Do you know the guy who gave it to you? If so, did he know he was HIV+?
I didn't know the guy that infected me. I met him on a Sunday afternoon. I ended up getting drunk, but still managed to ask him if he was positive. I kind of suspected. He told me yes and we began going at it, first protected, but then unprotected. I just let it happen! I don't quite understand why I did that. It's as if I let it happen, sobered up and then said to myself what in the fuck did I do. I don't know why I did that. It's so embarrassing and I am very ashamed of my actions, especially when I am someone that is educated about this subject and knew the importance of safe sex. Clearly I was not in the state to make healthy decisions.
AIDS: The day I found out
With an overwhelming response to the first installment of this series, I am happy to see that many are walking away from this with the same determination to help others; adjust their own lifestyles; and see a shift of responsibility in the community! A number of you have made contact with the various community Organizations that offer help and services for those impacted by HIV.
This next installment covers a time in Jay's (Not his real name) life where he was faced with the terrible news that he was HIV+. Notice the courage, determination, and honesty in Jay's responses.
Did symptoms or fear of infection drive you to get tested?
Yes symptoms of infection drove me straight to the Doctors office. There was one specific sexual encounter I had two weeks prior to coming down with a severe cold. I new something was up and even told myself the night I left his place that if I get sick in the next two weeks that I have probably been infected. I was sick for about five days with horrible pains and fevers. I got to the doctors office and told them exactly what had happened.
What method was used to test you?
They drew blood and sent it off to get a viral load test done, even though that is not "approved" for HIV testing, although it is used for HIV patients to see how much viral infection is in per milliliter of blood. The blood work took 12 business days to get back and I continued to be sick with the symptoms. I developed a horrible rash on my hands and bottom of my feet. I did have a glimmer of hope that it wasn't HIV because my doctor said the rash looked like syphilis, but that came back negative.
Who told you you were infected?
When the results finally came back, my doctor was the one that came in and told me. I was in a complete daze.
What were the first words to come out of your mouth?
I think my first words were "okay, what do we do," or "okay, I thought so."
What were your thoughts?
My thoughts were of complete devastation and humiliation for the simple fact that, I am an educated man and knew better than to have unprotected sex. But recall, at that time in my life I wasn't in a good spot, I didn't love myself enough to care and THAT came back to bight me in the ass.
Who did you tell first?
I believe the first person I told was my roommate at the time.
Were you angry?
When it comes to being "angry," I was; more at myself than anything. The first two weeks after being told; I was in denial, then came complete depression and unstoppable control of emotion. The haze finally cleared after about a month and I continued with life. But from the very beginning I remember telling myself that I am not going to let this get me down and that I was going to do everything to educated myself on this disease and figure out the best way of fighting it.
I think we can all take Jay's example and educate ourselves on HIV. You realize that this impacts us all; straight, gay, or bisexual. Whether you are sexually active or not is isn't the issue. Education impacts daily ability to make healthy decisions. This goes much further than the simple act of using a condom. It has to become part of our life's course so when you are in a moment that requires you to make a choice; you'll not falter. Jay said in the first installment of this series that he "dismissed that fact when in the act.". He will tell you today that, that is where he went wrong.
AIDS: The scarlet letter
The negative stigma attached with HIV is overwhelming. There's no easy way to say that. It simply sucks to contract. Sure, we have come a long way in drug research and prevention, but ask any HIV+ person and they will tell you that it sucks.
Clearly, life changes for the individual diagnosed with HIV. In Jay's (Not his real name) case we've seen a new commitment in helping prevent others from the unhealthy choices leading up to AIDS. Installments one and two in this series have introduced us to a man; who not unlike ourselves; knew what he was doing.
Jay will tell you how situations in life made him ignore what he knew to be a bad decision. I don't know about you, but I really relate to Jay. Haven't there been times in our lives when it just didn't seem like life was worth all the fuss and worry that we devote to it! All of us can relate to the "I'll worry about it later" tape that plays in our mind. Jay is just like us.
Or is he? Like it or not, the straight community is not the only people group that brandishes the scarlet letter to victims of HIV. The scarlet letter [usually the letter "A"] was branded on your skin so everybody knew of your sin. Women would have it sewn on there dresses. It was thought by the Puritans that if you sinned, you would go to hell and because of this no other citizens would want to be near you lest they go to hell by association. Our legacy not just as the LGBT community but as the community of humanity depends on how we care for others. It is my hope that you will see a bit of yourself in Jay. In his shoes we might be able to renew our commitment to loving, accepting, and serving others.
Have there been any physical signs?
There have not been any physical signs of me being positive and hopefully there will never be. But there is the large potential for things to happen down the road! That all depends on a persons body type, medications and lifestyle. One of my biggest fears is the occurrence of lipodystrophy; also known as wasting.
(Def: Lipodystrophy meaning "Lipo" [refers to fat] and "dystrophy" [refers to abnormal growth or change.] Abnormal fat changes. Fat redistribution syndrome. A build up of fat: Some people see the amount of fat deep within the body—around their gut increase significantly. Increased fat pads—a buildup of fat on the back of the neck and shoulders has also been seen, as well as increased fat tissue in the breasts. Some people have also reported round, moveable, flattened lumps of fat under the skin. A loss of fat: Some people see the fat in their legs, arms, buttocks, or face diminish. This can cause veins to protrude in the arms and legs and sunken cheeks in the face. Source: www.aidsmeds.com)
I do know that the best prevention of this is the gaining of muscle and decrease of fat.
Were you worried people would find out?
I am really not out with my status. It's not one of my proudest moments!! Lots of my friends and some acquaintances know. I've found it important to be careful with the people you choose to tell. We all know that people can be cruel and unfortunately this can be ammunition for someone to hurt you. I have become more comfortable in my own skin lately so I feel there really is no need to tell everybody.
Did anyone you told shun you?
I have not necessarily been shunned, but have dealt with that type of behavior from some coworkers. One in particular has come to his own conclusion of my status even though he has not been told. One day he wouldn't even touch the same stapler that I had just used because I had a cold!
How were you treated by doctors, nurses, & pharmacists?
Absolutely wonderful. The day my doctor told me, Travis, a nurse at Northstar came in to take more blood. He asked how I was doing and I just broke down. He held me for a good fifteen minutes and just let me cry in his arms; saying "Just let it out".
Have you been honest with tricks about your positive status?
At first I did tell some and didn't tell others. Why exactly I don't know. I think it was fear. But now I do tell everyone and if they have a problem with it, then it wasn't meant to be.
Jay is not the only one who's not been completely open about his status. Take one look at sex proposition websites and you'll see a "no answer" in the field populated for HIV status. Sadly this is a fact of life. The HIV infected individual is damned if they do; and damned if they don't.
NOTE: Illinois law says that any HIV positive person who does something which could transmit HIV is breaking the law. You don't have to actually infect someone to break this law. Just putting someone at risk is enough. This is even true if you are practicing safer sex. Under Illinois law, if you wear a condom during intercourse but don't tell your sexual partner your HIV status, you might still be breaking the law. To protect yourself legally, you should always disclose your HIV status before engaging in any sexual or needle-sharing behaviors. (Source: AIDS Legal Council of Chicago)
This should also serve as an unambiguous warning to those sexually active folks who have trusted their tricks! You may not want to ruin your chances for possible sexual encounter, but whether or not you are HIV+; you and your partner deserve to ask/answer that question. I would suggest you avoid thinking "Oh I won't get it.", "Nobody will know.", or "People with AIDS are living normal lives now." They are NOT! Listening to Jay has shown me that! His health (Both mental and physical) is a daily struggle. Most don't have that kind of worry added to their daily concerns.
Many of us have been touched by HIV. We may know someone who has it or might have it ourselves. It is time that everyone, gay, straight, or otherwise; step up to the plate of compassion and Make A Difference with our time, care, and cash!
AIDS: Pill, People, and Pulse
I can't tell you how many emails, phone calls, and hails I've received regarding this series on AIDS and the wonderfully transparent thoughts of Jay! (Not his real name) It is really hard for me to imagine the sensitive place this has put Jay! Here he is; opening himself up to public scrutiny as he sees his life written for the whole world to comment. I've had the pleasure of forwarding on the warm wishes and kind notes to Jay.
Part of the reason why Jay agreed to do this interview is because he wants his life to impact others. Jay realizes that a lot of people are contracting HIV that simply shouldn't. In a day and age where information is at our finger tips; we should all know the things to do and not to do; to protect our health. We also realize that countless women and men are HIV+ and need to know that we as a community support them and the difficult road they travel. To them and those who will follow we dedicate this series.
How many pills do you take a day?
For my HIV medication, I take three a day, two in the morning with a meal and one at night on an empty stomach. This doesn't include the two glucosamine a day for my joints; the one mega man vitamin a day; and one Valtrex a day for shingles I've got from an HIV opportunistic infection.
How much does your medication cost?
My medicines cost nothing because I am participating in a study at Northstar. My Valtrex is taken care of because of my AIDS Drug Assistance Program (ADAP) coverage. If I weren't eligible for ADAP ($41,600 for a household of one) and participating in that study, then my medication would cost me around $2500.00 a month!
It is worth noting that not everyone is eligible for this kind of financial assistance. Simply put, it is very expensive to live with HIV. This doesn't factor in the unforeseen sicknesses, and or doctor/hospital visits.
What are the side effects to your medication?
I don't have many side effects. I have experienced some vivid dreams with the medication that I take at night. Now this differs for each person. I have a friend that has experienced weight gain with his medication, but I think he is on something else. It really depends on each person, their body type, lifestyle, etc....
Have your friends been supportive?
My friends have been incredible! I am blessed and realize that not everyone is as blessed as me.
Have you got a good support system?
My support system is also amazing, it consists of my friends, my brother and the doctors & nurses. They are fabulous! I do need to mention the great support from my case manager, as well as the Howard Brown HIV 101 education class and Support Group. I also greatly appreciate my therapist.
What does your family think of your positive status?
As for my family, my brother is the only one that I have told due to his laid back attitude towards life and his deep pockets. (Just in case anything happens.) It does bother me that I haven't told my mom and dad. I want to do that when I have completely come to grips with this and have my life completely in order.
Other people's thoughts and opinions do affect a person living with HIV. Just think of how school kids are impacted by other school kid's opinion and multiply it by 100.
How does this impact your day to day?
I don't let myself get down a lot about this. I have been extremely proactive about learning as much as I can about this disease. I know now that I am going to be okay. I find that I still get down every once in a while but it's less and less everyday. I do remember getting down when I would get sick after being infected because I knew it was from the HIV. But now being on my meds, I feel much more secure. As for my life span, I have thought about that and realize that most likely I won't live as long as I would have. There are so many other important things to worry about besides that! I just chalk it up as it being a realization that I have to live with. Who knows, with medication continuing to be better and better, I might live a very long life.
____________________________
There are many organizations that are there for you. Don't be afraid to ask for help!
It's time for all of us to play safe; get tested; and make healthy choices daily!
Thank you "Jay"!
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