Got My Brain Checked Out
February 6, 2015
A few years ago I was scheduled to get the inner workings of my brain checked out. I’m not sure what lead to the scheduling of the appointment, perhaps I confided in my doctor that I felt particularly forgetful or just not with it mentally. What I do remember is that, a couple of days before the appointment, I cancelled.
Because I was scared as hell of what the results would be.
Instead of running those tests, I placed the blame on my HIV meds. Surely my mental fog was the result of those little buggers, right? So I tried a couple of different combinations… but, as the size, shape and color of the pills changed, the mental fog remained the same. As I thought about my options, there was a glimmer of hope that my brain wasn’t atrophied from three decades of living with HIV…
The hope was in the form of Adderall.
Over the last several years, on occasion, I’d taken adderall. But not prescribed. If I had a huge writing task, I’d obtain it, but just for a few days use. I slept like a baby at night, I didn’t feel hopped up or high. I felt, well, human. Like I could carry on a 10 minute conversation with a friend and not feel like I had to rush home for an hour-long nap afterwards.
I spoke openly with my HIV doc about my concerns, and that glimmer of hope. An appointment with a psychiatrist was made, and after an evaluation it was determined that I had ADD. Adderall was prescribed and I was monitored with monthly appointments. This was a year and a half ago, and my quality of life has improved dramatically since then. Not to mention that my worries of mental decay were alleviated… temporarily, at least.
A couple of months ago my insurance company took notice of my Adderall prescription. They must have said, “What a minute- Mr. Hemophilia and AIDS is on what???” As part of their standard practice they required further tests because, you know, what do doctors know that insurance companies don’t? And I’m sure their accountants placed my well-being above all other priorities.
So, in a full circle moment, an appointment was made to determine my cognitive abilities. More puzzles and conversation than taping wires to my body and X-raying my brain. But still, those nervous feelings came back again. Was my mental clarity an adderall-created mirage? The kind of false bravado that convinces a beer-drinking 120-pound man to find the biggest guy in the bar to pick a fight with?
Though my fear was plausible, this time, I didn’t cancel. Like my ADD diagnosis, I just wanted to know the truth about how well my mind is working. I didn’t take adderall for a couple of days before the testing. That morning arrive, I woke up early, did the three hours of tests and then waited a couple of weeks for the results…
The ADD was confirmed by the testing. Admittedly, I did better in some areas than others- but, ultimately, any fears of impaired cognitive abilities as a result of HIV were laid to rest. And, really, I couldn’t have asked for better results.
Limping Into 2015, Literally
January 24, 2015
My last blog post was on December 4th- I was ending the year of 2014 in arguably the prime of my life: confidant and wearing a moustache for the first time, standing naked in a shower raising money for my friends at the MTV Staying Alive Foundation…
And then it happened. The December Surprise.
It’s seems that, every December of every year, there’s a medical surprise of some sort. Sometimes big, sometimes small. But always in December. This year’s surprise came in the form of a cough, on the evening of Sunday, December 13th. It is now January, 24th and the cough is still here. It’s not serious or deadly, just lingering. Rumors of the cough’s force had been spreading throughout my community since early Fall, so my immune system did it’s best warding it off until December when, apparently, my immune system decides to take some time off to celebrate every religion’s holiday season.
Another aspect of the cold winters of Virginia is my left ankle, which has been ravaged due to years of slight bleeding. I swear the cold weather severely aggravates the physical handicap. The cartilage in my left ankle is pretty much gone, leaving bone to bone friction… I know that sounds like the male equivalent of scissoring, and it is just as physically awkward. Most times I get around fine, but when my ankle starts to painin’ me, boy does it start to painin’ me.
On the bright side, I have acquired a Handicap Parking Pass. One that I promise not to abuse in the times when I can walk fine. In recent years, traveling by plane has become pretty unbearable due to the ankle- after 3 hours flights of being crammed in Coach, my ankle lets me know it isn’t happy. Starting a few years ago, there have been times when it’s been so bad that Gwenn has had to get a wheelchair and push me through the terminal. The Pass will certainly help on those trips, allowing us to park closer to the Terminal and also closer to where we are speaking when we educate on sprawling college campuses.
Though this blog may make my life out to seem like a heaping pile of shit, I’m actually quite happy. And even optimistic about the year ahead. The ankle is my spirit bone for 2015: take a long-standing problem and apply a solution to it. In about ten years time, science may be able to correct my ankle by regrowing cartilage in the joint. I look forward to resuming my legendary League bowling career in my 50s and joining my brother, father and grandfather as a Decker who has bowled a perfect 300 game in league bowling.
Till then? I’ll do what I’ve always done. I will walk, sometimes limp, forward towards more adventures. I turn 40 this year and I have a feeling it will be the best decade yet. I’m content with who I am, what I’ve done and am eagerly anticipating the next growth spurt in my life.
But that’s long-term. For now, I’ll settle for no coughing.
Cash for the Stache? Let’s Rock AIDS!!
December 4, 2014
You’ve seen the moustache… and more of me than you intended to this week… and, well, the time has come… so let’s harness the full power of Freddie Mercury together!
The fundraising drive for MTV Staying Alive is live- from now through Saturday you can make a minimum donation of $8 (MTV Staying Alive and the Big Give fund drive is based in London- so a £5.00 donation roughly equates to $8.) Your donation goes towards helping young people fight HIV in their communities around the world. But it also does much more.
For each dollar, Durex will supply 5 free condoms for young educators- meaning that your minimum donation of $8 (£ 5.00) would provide 40 condoms!
What will happen regardless of whether the donation gets doubled? You’ll help vital prevention programs get funded. HIV is a complex problem, but proven strategies combined with a creative approach work in minimizing risk for HIV transmission… and MTV Staying Alive has an incredible track record.
So let’s do this! Join me in making a donation today… or I’ll post more pictures of me in the shower with this moustache. And yes, the drapes do match the curtains. Don’t make me prove it.
We Are All Queen,
My Sexy Freddie Mercury Shower Pic
December 1, 2014
So many campaigns and so little time each year to have eyes and hearts on this issue. I’m so thankful to be here and to be a part of a community that is fighting back against this epidemic in wonderful ways that change lives for the better. I hope you all are having a happy and safe World AIDS Day.
We Will Rock AIDS,
UPDATE: Gwenn took a shower selfie this morning to join in the fun! So thankful to have such a loving partner.
We Are Clean… AND the Champions (of the World)
November 28, 2014
Are you hanging on the edge of your seat?”
“Another One Bites the Dust” – Queen
It’s all about the word “clean” and how it’s used to imply that anyone with HIV- or any other STI, is somehow dirty by proxy.
So yes, I’d love for you to support me in my World AIDS Day campaign by donating money on December 4, 5 and 6, (starting at 5 am EST on December 4th!!!) when donation amounts are doubled. But it would also be great to get as many people as possible to join in on the #weareALLclean movement on World AIDS Day. Use the hashtag- you don’t have to post a shower selfie, either, if you aren’t quite as bold as, say, Freddie Mercury, then don’t worry: you can vocalize your support for the community and reinforce the idea that a positive test result doesn’t mean someone is no longer sexually or emotionally attractive.
We are HIV positive. We are clean. And we are the champions of the world.
The Power of a Freddie Mercury Moustache
November 20, 2014
I’m in the process of doing something I’ve never done before… I’m growing a Freddie Mercury moustache.
I’m revealing the moustache on World AIDS Day, December 1. Then, with your help we will, WE WILL rock AIDS together for the MTV Staying Alive Foundation. Because on December 4, 5 and 6 donations to this organization are doubled! So a generous donation of $10 will count as $20. (Don’t worry, I’m not going to insult you by giving any more examples.)
I’m proud to be a board member for MTV Staying Alive- they support incredible work around the world and make a true difference in peoples’ lives by funding community members to address the specific HIV needs where they live. And a little money goes a long way.
I’ll have details on how you can help very soon, and will be posting growth progress. Right now it’s a bit patchy, dawg. But with your good vibes I’m sure I’ll be able to grow a stache that Freddie would endorse. And with your help, we will grow a moustache that harnesses the same kind of power that Freddie used to rock audiences.
We Are the Champions,
Former POZ Coverboy, Bob Bowers, Rocks On VH1
November 18, 2014
Last month I posted a critical observation of VH1′s reality TV show, Couples Therapy. The post was in regard to how castmember Evel Dick’s HIV disclosure (in episode 5, “The Truth is Out There”) was handled. Two weeks ago, however, the show really stepped up when they brought in long-time HIV advocate and AIDS asskicker Bob Bowers to give Dick some words of encouragement. (You can watch full episodes here- but the one referenced in this blog, “Meatball Problems”, won’t be available until Dec 4.)
Bob has been living with HIV for three decades and has a no-nonsense approach to HIV education. He wears his heart on his sleeve, which is an impressive sleeve of ink I must say. I really admire his work, and I applaud Couples Therapy for giving Dick the opportunity to connect with Bob, who casually told his own story, offered his ear to Dick’s concerns and also informed Dick about the facts about HIV transmission for those who take their HIV medications regularly and acquire an undetectable viral load.
I’m sure it was a revelation for Dick- and the issue of transmission, spoken in such detail in a relaxed manner, isn’t something you see on TV very often.
Kudos to Bob, Dick, Dr. Jenn and VH1 for giving people the opportunity to learn more about HIV and how it affects people and their relationships.
Pedro Zamora, Half A Lifetime Ago
November 11, 2014
Today marks 20 years since Pedro Zamora passed. That’s half my lifetime ago, but the loss still resonates with me because of Pedro’s influence on my life and my work as an educator. His relationship with Sean Sasser on MTV’s Real World showed me that a loving, healthy relationship with HIV was possible. Pedro’s roommates reactions to his status were mixed in the beginning, but the solid friendships that grew (particularly with Judd Winick) made me realize how cool my friends would probably be if I ever spoke about HIV.
See, half my lifetime ago, when I “met” Pedro through his appearance on my television, I was a year and a half away from talking about my HIV status. At that time, in 1994, I’d spent pretty close to half my lifetime living with HIV… yet I’d never openly discussed my status, only when backed into a corner by my parents or at a doctor’s appointment. Or when someone ratted me out to a girlfriend.
Pedro showed me that you can disclose on your terms. That HIV can just be an extension of who you are. If someone has a problem with your status, it’s not your fault it’s their ignorance that is the reason for the uneasiness.
His educational style was more straightforward and less laid back than the one that I would adopt after I spoke out; but in the pre-protease era, that’s how you needed to reach people. I loved watching him educate on The Real World, then simply live his private life in public as he fell in love with Sean Sasser and shared laughs with Judd and his other roommates over silly, mundane things.
As I was watching from my parent’s house where I was living at the time, my now-partner, Gwenn, was also tuning in. Her thoughts on Pedro:
“I remember watching the San Francisco season of the Real World between
my freshman and sophomore year of college at my friend’s house each
week. When I went back to school that fall I also remember the day that
Pedro Zamora passed. It was very soon after that I heard a young woman
speak at my school who was HIV positive and that is where my journey to
becoming an activist began. It’s been 20 years today since Pedro’s death
and although I didn’t know it at the time it was the precursor to my
When Pedro passed in the fall of 1994- the same day that the last episode of his season of the Real World aired, I was devastated. All of my fears of my own mortality, which I’d mistakenly thought I’d come to terms with, bubbled up. Throughout Pedro’s journey, I was making baby steps towards a future I didn’t think was for me: being open about my HIV status. But after he died I just wanted to go back to never thinking about HIV again, and I hated it for taking my new hero so abruptly.
Ironically, Pedro was a hero I couldn’t even say was my hero: half my lifetime ago I was still so quiet about my HIV status.
A year after his passing, there was a Real World Reunion. Judd, Puck, Pam, Sean and the rest of the cast were there. Everyone except Pedro. Judd teared up and asked viewers to “do something” about HIV, anything. It was a desperate plea not only for himself, still grief-stricken, but also a call to arms that his friend, Pedro, would have given had he been there. I was in a lingering depression, one that would last a couple more months- 1994 had been tough, I lost pop culture heroes in Pedro and Kurt Cobain and was also blindsided by a hepatitis C diagnosis.
At the beginning of 1996, I was ready to answer Judd’s call. I posted a website, outing my status once and for all. I began to hone my craft as a writer and develop an educational style that, like Pedro’s, was just an extension of who I was.
And now it’s a half a lifetime later. Pedro’s not here in the physical sense, but his influence has stayed with me over the years. I have the love and the life I dreamed of when I was watching him and learning about his life; a journey he unselfishly shared.
I’ll never forget the doors he helped to open up for me in my own journey.