The Archives - The Truth

Reading this one reminded me of youth & angst. If I'd been Morrissey, I could have recorded an album from some of these blog entries.

But I wasn't Morrissey. I was just a guy. Same guy I am now. Just a little younger. With a soul patch. Um, and maybe not as good a driver. A little less versed in the game called life. Definitely not as good a cook.


I've said it once. Twice. All week. Tomorrow is World AIDS Day. And this is my last post this week from the archives (I'm going to write something "original" tomorrow - I'm not always lazy!). On that day thirteen years ago, I composed this little diddy on my blog:


December 1, 1999 - The Truth

The truth is, I sometimes don't know what to do.

The truth is, I don't always have such a bright outlook on life.

The truth is, I wish I never had to deal with HIV.

The truth is, I miss all of my friends who have passed.

The truth is, I don't have all the answers.

The truth is, I hate taking my medications.

The truth is, I feel very alone.

The truth is, I sometimes want to give up.

The truth is, I often get scared.

The truth is, I occasionally want it to end so I can stop waiting.

The real truth is, these other truths are what make life such a grand experience.

The truth is, 20 years or 100....I'll enjoy every step.



The truth is, I'm thankful to be here, if only for this moment.

The truth is, I'll never quit living.

Today is World AIDS Day. Remember the truth about your life and others. Share the truth with those you know. Listen to the truth from those who trust.

Live the truth today.

Tomorrow.

Always.

j-

The Archives - Release

Peering into the past... through my first webcam!

I know many of these archive entries aren't much for anyone to read. But have you ever gone back through an old journal you once kept? Looked back at your younger self (the photos are always fun!). How you viewed the world back then. The lessons you obviously hadn't yet learned. The reactions you had to different situations.


How you've grown.

And how some things are pretty much the same?

Yeah, that's kind of what this entry was like for me. I have a hell of a lot of great days. Almost always optimistic. But once in awhile... I'm reminded I'm human... maybe when I'm at home alone... after a tear-jerker of a movie... or when that certain song comes on the radio...

10/18/99: release

With these new HIV treatments available, many people with the virus are staying healthier and living longer. Due to this, the death rate has taken a nose dive. Still, every once in a while we get a reality check. I had mine today. Someone I know was admitted into the hospital for HIV-related problems. It's been a long time since I've had to deal with it. I've forgotten how much it affects me.

Anyone who has had a sick friend, family member, or co-worker really sick or in the hospital understands the anxiety that accompanies the event. We buy cards, send flowers, and maybe even sneak a Big-Mac in for them. Every time we stop by to visit we force a bright smile onto our faces. We may try to help them laugh. We may even cry with them. If we're spiritual, we might pray for their recovery.

J.D. (Jim's Dog): 8/99 - 4/11 - RIP buddy of mine.

We worry about...
...the things we meant to say but never got around to.
...not being able to do the things we had planned with them.
...losing someone close to us; someone we love.
...being left alone.


Beyond the concern, we may also be faced with memories of other losses we have known. Other visits to the hospital. Memories of pain long buried that are now dredged up at a time we feel least capable of handling them. We do our best to focus on the situation at hand yet when we are in bed late at night, these memories visit us...no matter how tightly we shut our eyes.

During times like these I also begin to look at my own personal health. Especially when I know that my friend in the hospital is dealing with HIV-related problems. I begin to lose a bit of the courage I've worked so hard to build. I begin to question the efficacy of the medications I take. I wonder if I've made the right choices in my own healthcare or if I'm doing enough to take care of myself. I once again start to ask myself, "When is it going to happen to me?" A question that will forever follow me.

Strange how looking back can remind you to look ahead.

What I do next is remember what a wonderful friend of mine, Jill, told me as her son was dying.

"You're going to be one of the lucky ones. You will be around for the cure."

Then I hold on to those words...and maybe cry.





Release the worry.
Release the fear.
Release the pain.

j-

In keeping with my World AIDS Day promise....

Ah, those memories of youth.

I promised a post a day from my old blog until World AIDS Day. And I won't renege on that promise.

Unlike the past few, today I'm going abstract. Not a story of my life or of a friend I lost. Just something I wrote in 1997. It's a poem. Does it have anything to do with HIV? Maybe. But, like all "art" I'll leave that to the audience. (By the way, I'm not saying it's good or even relevant - was just easy to copy & paste, hah!)


Risk

An elusive glance,
from my eyes to yours,
grabs at the center
of your distant soul.

Wet breath, thick,
passing from one mouth
to another, ignites a flame
in the crux of your heart.

A finger, trailing skin
warm from passions motions,
brings your mind closer
to understanding dependence.

While the scent of man's flesh
pressed against your darkest corners,
decidedly tells your being
you are no longer alone.

Whispers, stares, embraces
shared in heated exchange
are no antidote or cure
for blood gone bad.

A life spent searching
can find its power only once.
Shamefully admitted though,
it's too often passed over.

In order to live intensely
one must risk one's self;
but allowing rationality to win
you lose eternity in the battle.
It's your mind. Your soul.
You decide. You choose.
But never forget your answer
for I'll never ask again.

_______________________________________

Ahhhh, what the hell... I'll give you two...

Litter

Center of ones soul
Tainted by the life it chose.
Inner turmoil never controlled
Or overcome.
Believing there was no power
Strong enough to win.
A life made filthy by its travels
Just as the sole of a shoe
Is dirtied with grease and shit.
Stepping blindly
Along a trail full of answers
But obscured by questions.
Litter blowing on the sidewalk
Of ones mind
While empty trash cans rot
On each corner.
It is now too late to collect the pieces
Of a mind in which little was learnt
Because little was sought.
Never knowing there were options,
Only giving in
To a falsely determined fate.

The Archives - World AIDS Day 2000

Yep, more World AIDS Day blog entries from a little while back: December 2, 2000 World AIDS Day was yesterday. I completely forgot about it. Weird. But new news on the HIV front. I have been to the doctor recently...for the first time in nearly a year. Usually I have some slight anxiety about these visits to the doc, just because there's always this fear of getting bad news. This time the anxiety was much stronger for two reasons. Of course the first reason was because I hadn't been in a year. All that time for something to go wrong without my knowing of it. But the second reason - and this is the BIG one - was because I stopped taking HIV meds in April. Yep, I did. That's quite a risky thing, I know. But from what I've read (and I did a lot of research before I did this), many people and go on these medication breaks without developing resistance to the medications, as long as they stop all meds completely. Now I don't really recommend this, but for me it seemed like the right choice at the time. Really added to the worry though when I finally made it back to see a doctor. Of course, being off meds, I couldn't expect my viral load or t-cell count to stay where they were. I'd actually planned for the worst news. Turned out I didn't have a great deal to worry about. Over six months off meds and my t-cells hardly fell at all. They're still in the 'normal' percentage range and that number only dropped by 2 percent. Viral load was up as expected, but it was nowhere near as high as I thought it may be. It came in at around 15K. Still very manageable in my mind. The doc said she wanted to monitor things a little more closely now...maybe every two months...but there was no need for me to go back on meds. Yah! Sometimes I feel very lucky. j-

The Archives - 2000 Miracles

With World AIDS Day this Saturday, I've decided to go through my old blog and pull some of the entries about HIV from then and post them here each day. AIDS/LifeCycle has a goal to reach $1.5 million by Saturday and maybe some of that will come through new sponsors for my ride.

So in honor of this year's World AIDS Day and representing just a portion of the 31 years HIV & AIDS have affected our lives, here are more reasons I ride. Reasons I composed before the name AIDS/LifeCycle existed. Things have changed in the past dozen years - my attitude, my outlook, and even the lines on my face! For you regular blog readers, you'll get a peek into how my writing has evolved over the years too, hah!



December 31, 1999

See that date there? Yep, my thirties
were still on the horizon ;)

2000 Miracles
Today is a special day. Well, of course it is...it's the last day of a year, the final hours of a century, and the ending moment of a millennium. For many people today signifies a time for reflection, a few moments for remembering the past, and the last chance to make right the wrongs of the year. Tomorrow brings thoughts of change, fresh seedlings of hope, strong waves of motivation and new found freedoms. It means all of these things for me too...but it has another, more significant meaning.

I heard the words on November 27, 1991. I found out I was HIV-positive. 1991...we'd known AIDS for about 11 years, it was still a gay man's disease, Presidents still didn't speak about it, and families still hid it. 1991...AZT was the only hope and people were still dying by the thousands. 1991...I was 21 years old.

Three things went through my head when I was given my test results: "I'm too young for this," "I can never have children now," and "I'm not going to see the year 2000." I don't know why those are the first things I thought, they just popped into my head. Now here I am eight years later and I'm proving at least one of those thoughts wrong.

J.D. just a month after he joined my family!
(Also, look at the time....I used to be a nightowl!)

Tonight I'm going to celebrate life...not yours, not that of my friends, not the life of great people in history or of the human race. I'm going to celebrate my life. There I go being selfish again but damn I feel I deserve it. For over eight years I've lived with the thought of death looming over my head and for once I feel I can let go of it. Tonight is the night. I'm going to celebrate the moments I laughed, the moments I cried, the moments I was bored senseless and the moments I was a complete asshole. I'll look back on everything I've done with no regrets, knowing I've done the best I could with the tools I've been given...and sometimes even created my own tools. When the clock strikes midnight, I will kiss every person that has entered my life, whether they're still in my life or not.

Tomorrow won't be just another day. It is the day I thought I'd never see. My tomorrow will be the first tomorrow I've looked at without fear. For me, the year 2000 is a miracle...and only the first of many more to come.

j-

An Attitude of Gratitude

It's Thanksgiving. You knew that, didn't you? I don't know how you could have missed it - not with all the Facebook photos of turkeys in ovens, pie doughs being rolled out, and sweet potatoes being covered in marshmallows, brown sugar or brandy... or all three!

In keeping with tradition, I'm baking today too. Not a pumpkin pie or a green bean casserole. I'm keeping it simple with a Black Russian cake with raspberry glaze... not exactly traditional but it gives me a chance to put my new fluted pan to use. I'm sure I'll be following more tradition by posting a photo of the finished product later!

Also keeping with tradition, I thought about writing out a list of things for which I'm thankful. Then I realized not only is it just about everything in my life but, since I try to remember how grateful I am every day - okay, I try to do it often, if not every day - that creating a list today makes it no different than other days. So I put away the blog for the day, thinking I just wouldn't compose an entry today. Then two things happened back-to-back.

My morning routine hasn't been broken this morning. I'm sitting here in front of my computer. I have a cup of hot, black coffee to my right. And the news is on in the background. Of course, many of the stories today revolved around the holiday - the Macy's Thanksgiving Day Parade, live feeds from homeless shelters and soup kitchens, video of people camping out for Black Friday, iPhone apps that help you shop/get discounts at retailers and, finally, a list of stores open. Today. Retail stores. Open. All. Day. Long.

Seriously?

In the past, I've been known to voice my opinion that on two holidays (Thanksgiving & Christmas), the only workers who should be required to report for duty are those involved in essential services - police, fire, medical, etc.

Of course, through the years, it's become more common for people to ease their holidays by eating out instead of cooking a traditional dinner. So I suppose I understand that some restaurant staff will be working. And many take advantage of the long weekend to travel - so, again, I begrudgingly accept that those in the travel and hospitality industries might have to work. Here in Vegas, the casinos don't close - I have mixed feelings about that. But retail stores. I just don't get it.

Kim & Dana (those are my local newscasters), listed off the stores that will be open today. Here's a partial list:

• Miracle Mile Shops
• The Forum Shops at Caesers
• Las Vegas Premium Outlets - North
• Walmart
• Old Navy
• Sam's Club
• Burlington Coat Factory
• TJ Maxx
• Ross
• Marshall's

These aren't stores that are opening at 8 p.m. or midnight for early Black Friday specials. That's reserved for stores like Kohl's and Target. But the stores listed above are open all frigging day. And most of them are even extending their hours today - some starting as early as 5 a.m. So not only do these workers have to work on Thanksgiving. They have to get up at some awful hour they're probably not at all accustomed to. Then work a nice 8, 10 or 12 hour day. The lucky ones will get the early shift and maybe... just maybe... drag their tired butts home and their loved ones will have set aside a plate of leftovers for them to eat while the rest of their family is already napping from their tryptophan-induced food comas.

I get that we've replaced our instinctual need for hunting and foraging with shopping. I even understand that we've somehow replaced showing our love through hugs and words by showing it with gifts and things. I understand it - doesn't mean I actually accept it. But I just don't get how we can't put that on hold for one damn day. A day intended for gratitude. A day revolving around the custom of spending time with family and friends. Of sharing the ideals of community and friendship and love. Instead, we've turned the custom into a day of just plain spending.

My belief that retailers should not be open today - shouldn't even open early for Black Friday - was shown through the signing of an online petition asking Target to not open tonight for early Black Friday shoppers. Although the petition did nothing to change the plans of these retailers, it did do something for the young woman who started the petition. I received an email from her today:

________________________________________________

Jim -

Tonight, I'll be putting on my red shirt and going to work at Target after I eat Thanksgiving dinner. But when I sit down at the table, I'll be thinking about everything I'm thankful for -- including you.

When I started my petition asking Target to open later for Black Friday shopping, I never imagined it would be this successful. Nearly 370,000 people (including you!) signed in support, and my campaign inspired 157 other petitions by workers at retail stores around the country. I even flew to Target's headquarters in Minneapolis to deliver the signatures! I am truly in awe of the effect just one petition had for so many people like myself, who want to keep Thanksgiving dedicated to family.

Target may not have decided to open later on Thanksgiving, but you and I were definitely heard by retailers everywhere opening early for Black Friday shopping. My story was featured in the media 1,628 times, including interviews with the Washington Post, TIME, USA Today, and many, many more. (And in case you missed it from the previous email, you can see my interview on the Today Show here!)

When I first found out I would be forced to work on Thanksgiving, I felt angry and frustrated. Now, even though I have to go into work, I feel empowered, because all of you are standing with me. I know Target and other retailers got the message loud and clear that Americans care about Thanksgiving and family more than their bottom line.

Thank you so much for supporting me through this fight -- and have a Happy Thanksgiving.

Casey St. Clair
Corona, CA

________________________________________________

Casey, I hope you have a wonderful Thanksgiving too. I hope the shoppers who patronize your store this evening walk through those doors understanding the sacrifice you and so many others have made just so they can get a television for two hundred bucks. I commend you for standing up, speaking out, gathering forces, and bringing together a community. But, most of all, I appreciate your attitude of gratitude. Your ability to find the silver lining. To see the forest through the trees. To understand some things are out of our control but that shouldn't stop us from taking the steps necessary for change. I'm sure these steps you've taken this month will continue in the coming months and years and, maybe one day, your dream of a Thanksgiving with family - a Thanksgiving for all - will become a reality again.

I Lied To You. Kind of.

We all hate hearing that, don't we? Especially if it comes from our spouse or significant other or anyone we trust for that matter. And the "kind of" part - what the hell is that about?!?!?

I'm here to come clean. I did lie - one of those "lies of omission." Or, in this case, more of a half-truth. And we all know that a half-truth means a half-lie, right?

Just so you know, this entry isn't about the AIDS/LifeCycle event or why I chose to ride next year. If you're reading for that, there's probably no need to read further. This entry's  just about me. Because the past six weeks have been pretty... well, pretty hellish. It's been a roller coaster of health scares, lab tests, and emotions you wouldn't believe.

This is a microscopic image of MRSA.
A pic of a MRSA abscess is just too...
well, you understand... it's gross.

First, there was a minor thing that could've been a major thing. Only a few close friends and people at work knew about it. During the first week of October, I was exposed to MRSA... antibiotic resistant staph. I quarantined myself for ten days then had cultures done and everything came back negative. Whew! Deep sigh of relief everyone... deep sigh!

Then near the end of October I was feeling pressure in my chest. This one was much more public and quite a bit scarier. You see, many people with long-term HIV infection have a weakened heart muscle. No one's really certain as to why. Viral infections definitely affect all tissues, including muscle. And we've only really known about, and been studying, HIV for thirty years. Take into account the fact that I've had the virus for nearly 22 of those 30 years... in some ways I'm a lab rat. Those of us who've made it this long are the first group of people to show what long-term infection and use of antivirals can do to the body. The studies vary, but the numbers come in somewhere between 15-30 percent of long-term survivors have early onset heart disease. You can read a little more about that here in the New York Times.

The eternal optimist.

Knowing that, I don't take pressure in my chest lightly.

No pun intended.

Obviously, the hospital doesn't either. My risk factors, coupled with a "suspect" EKG (also something common with long-term HIV infection), prompted them to admit me and run a bunch of tests. X-rays, blood draws, ultrasounds, stress tests. And they discharged me with a diagnosis of cardiomyopathy and an ejection fraction of 25. Oh yeah - and prescriptions for three heart medications.

They pretty much told me I was a heart attack waiting to happen.

I didn't fill the prescriptions (to this day, I don't jump on the "take a pill" bandwagon - probably saved my life in some ways) but I did call my primary care physician and cardiologist immediately. My PCP couldn't see me for nearly three weeks but my cardiologist had an opening the next day. I am blessed in more ways than you'll ever know. And I have to thank Eric for reminding me to call the cardiologist even if my PCP couldn't see me.

I must admit, by this point I
was tired of all the needles.

Dr. Khan is probably the best educated cardiologist in Las Vegas when it comes to HIV-related heart disease (see, told you I was blessed). He understands things like those suspect EKG readings and he knows what to look for and which tests to run. And tests he ran. All of them. Poking, prodding, videos, x-rays, some radioactive material shot into my arm, sitting still for 30 minutes to scan my heart, blood tests, viral cultures. But the one thing he did give me was a little hope - he said there was no way in hell I completed a 21 mile bike ride just five days prior to getting an LVEF reading of 25. A ride in which I didn't even break a sweat. He thought they made a mistake.

Thankfully, they did. When all the results from all the tests came back, my heart and lung functions were totally normal and everything else came back negative. There's still not a clear answer as to why I felt pressure in my chest but he listed off a number of possibilities - none of which are any worse for your health than an ordinary paper cut.




So, now comes the lie. Kind of.

Just days after I got the all-clear from my cardiologist (five days to be exact), I went in for a routine cleaning at the dentist. What's the worst that could happen there? A cavity? Receding gums? An abscessed tooth? Need for a root canal?

Disclaimer: This is not my mouth - I mean, I hope
my teeth are in a little better shape than that.

Try cancer. Yeah. The hygienist saw some areas in my soft tissues and palate that she didn't remember seeing before - and she sees me 3-4 times a year. Seriously, Carolyn and I know each other well... we talk about vacations and family and relationships. Ok, she talks, I mumble. You know the old story about chit-chat in the hair salon? Well, that's the type of relationship I have with Carolyn. And she saw something that looked similar to the picture on the right. The doctor took a look with a velscope, confirmed there was reason for concern, took some photos & video, then wrote up a referral for an oral surgeon.

Post-surgery on Thursday. My poor friend Lisa
actually saw me like this. And, yes, there was
too much gauze to contain it in my mouth.

I called as soon as I got home. They had an opening the next day. Again, how blessed can I be? 

A couple of visits, a few cuts & quite a few stitches later, the tissue samples were sent to the pathologist. And the waiting began.

Did I mention how blessed I sometimes feel? Oh yeah, I did.

Dr. Frank understood my concern. Well, he understood because I voiced it. If he sent samples to the lab on Thursday and it takes a week to get the results back, then that would fall on Thanksgiving. No way I wanted to wait four days longer for results unless I absolutely had to. I mean, I was freaked out. And worn out. After the previous two issues, I just didn't have much energy left to keep on keeping on in that optimistic way I strive so hard to maintain. I very calmly explained my anxiety to him and he agreed to do what he could to ensure I received the results before the holiday.

You know what he did - he called the lab every day. He made sure they received the samples. Asked them to review them as soon as they could. And guess what... they did. They received the final samples on Monday. I had results this morning. A squeaky wheel doesn't have to be too squeaky. Sometimes, all we have to do is ask nicely. After more than two decades of managing my healthcare, one thing I've learned is to be open & honest with my healthcare provider and participate every step of the way.


The results came back negative. Hallelujah! No signs of any cancerous cells. I just have something called melanotic macules throughout much of the soft tissue in my mouth... well, everywhere except my tongue. My gums, my cheeks, my palate are all affected. Kind of like moles on your skin. Just dark spots you'll probably never see, no matter how intimate we may get. Most likely a genetic thing - from some darker skinned ancestor. You know, like the spots some dogs have on their tongue or gums. Yep. If you've called me a dog before (and a few of you have) you may have been correct in some ways. Feel free to call me "Spot" from now on.

I kept this information from most of you. The guys at work knew about it. Again, very blessed because I have those guys on my team. They picked up the slack, took on some added stress, and were supportive through each of these ordeals. Even dealt with me on the phone after the pain-pills kicked in... and trust me, I was loopy! A couple friends knew about it. Actually, only one friend knew the whole truth. And my brother knew too. He caught me on the phone right after I was leaving the surgeon on my birthday and it just came out. But I swore him to secrecy. Didn't want my sister or my mom to worry until I knew what exactly was going on. Just as I didn't want any of you to worry - and I know you would have if I'd told you the truth. So instead I told you a half-truth. I told you I had gum surgery. Which I did. I just didn't tell you why. No need for you to go through any unnecessary stress when we all have enough of it in our lives.

See, I told ya that wasn't my mouth in the
photo above... my smile's not half-bad ;)

I'm sure many of you are thinking, "He didn't have to go through this alone. I would have been there to support him." I know you would have. But, I've also seen how these types of things stress the people closest to us. Knowing you would be there if the results had come back differently is what got me through this. You see, you were there to support me. I didn't go through this alone. Sure, you might not have known - but I knew. I knew that if the news wasn't good, I could call up any one of you and you'd be there in whatever way I needed most.

You've each proven to me again and again... and again... the power & strength in community, family, and love. Having that as a foundation allowed me to manage one week  on my own while I waited for the results. My trust in you - your participation in my life - that's all I needed until I got the news. And the news was good. So thank you for being there for me... even if you didn't know you were.

There are no lies in this entry. Only truths. The two most important are 1) after a bazillion tests, I'm healthy and 2) I couldn't have made it through all this without the support of my family & friends. Oh, and can I add a third? I really hope to never go through six weeks like this again, hah!

I'll do my best not to tell half-truths anymore. But I'll also do my best to ensure none of you worry unnecessarily. It's a hard line to walk but just know you're with me every step.

To say the least, this month hasn't been "fun." I have great memories of Portland & Chicago. Pups lying with me while I was on bed rest. Friends stopping by with Sudoku puzzles and bags of candy. Or Sara & Jason watching me try to eat solid foods from one side of my mouth during a dinner party. But sometimes, life isn't easy. Not for any of us. The darkness reminds us of the light. The clouds remind us of the sun. And the pain can remind us of the pleasure.

I'll wrap this up by letting you know I just ordered Chinese take-out and today's fortune cookie was... well, just read it. Prophetic? I think so. Not just for me. But for all of us.