Lazy Sunday Morning

I love them, and I don’t often get to indulge, but today I do.
I woke up late, leisurely breakfast w/ Ken and the dogs (he cooked), soft jazzy music, catching up on email and facebook and here. No one to worry about. It’s all perfect.

Yesterday, I successfully defended our time together from intrusion, including begging the indulgence of some of my favorite people who don’t get to see me very often, either. I knew I just needed to spend time not working on anything, not worrying about the future of HIV Prevention in Montana, not worrying about my people, not thinking I had to find all the answers. I just needed to be.

We finally went to see a matinee of Where the Wild Things Are (fantastic), had a take and bake pizza and decided to watch the Maltese Falcon at home. So low-pressure and sweet- especially after a very busy last few days of meetings.

Simple pleasures.

I’ll take them, and am extremely grateful

Best Policy

Every once in a while, someone says something to me that is so simple and so profound that it stops me in my tracks. That happened yesterday when I was speaking to the class at UM.

I had told my story (small-town Montana boy, priest, ex-priest, counselor, addiction, MRSA, HIV, etc) and shared my counseling philosophy (primarily Gestalt) and my life philosophy (primarily Positive). I had a great time, but I could tell some people just didn’t know what to do with me.

Afterward, a student said, “How could you be so brutally honest like that in front of strangers? I’m so impressed, I could never talk about those things in front of people.”

I made some kind of “it’s no big deal” remark, thanked her and we all left. Later, as I was walking to my car, I thought, “It is kind of a big deal, I never could have done that four years ago, but today, I don’t think twice about it. Maybe that’s why some people don’t know what to do with me.”

I played my hunch and did what I usually do when I need a fresh perspective- I called Ken.

Ken and I have this psychic sort of symbiosis. When I’m crazed, he’s calm and vice versa. He can help me clarify my thinking like no one else I know. And when he makes me frustrated, I realize how silly it is to be frustrated. Hard to explain, it just works. We both hold the same values and share a similar vision of life. Our enjoyment in each others triumphs and foibles echoes something that I can only call shared respect. I look at him and I think “Wow- he’s been to hell and back and maybe not even back and is still so giving and generous and kind.”

I’m amazed. Really. And I think he feels the same about me, too. He tells me, and sometimes I even believe him. More importantly, because I work at being honest with him more than anyone else, I trust how he sees me. He reminds me of who I am when I forget.

Anyway, I called Ken and told him the story. And this is what I remember him saying: “Once you see the shit for what it is, you never want to go back- hiding is no longer an option.”

And that’s true. I’ve seen the pain and grief and sorrow that being ashamed and dishonest have brought to me, my family, my friends and even strangers. I’ve seen the joy and pleasure that my honesty and integrity have brought the same. Am I always completely honest? Sadly, no. Am I better at it? Definitely- but only because I was in too much pain to continue, and it also made complete sense for me to change. That pain and that sense keep me from going back to that place. That and honesty.

If I can let go of my attachment to my image or position or idea or anything- and just be real, as real as I can, as real as I felt in that classroom, life flows so easily for me. Flows so easily that sometimes I forget.

But it’s so nice to be reminded….

Travel and Talk

Today I go to Missoula to the University of Montana to speak to Annie Sondag’s class “Theories of Health Behavior and Counseling” about my personal experience with HIV, to share some stories, answer some questions (and do some big-city shopping!). It’s one of my favorite things to do and places to be.
I also have become (officially, yesterday) part of the team at The Bilerico Project, a unique blogging cooperative of diverse LGBTIQ leaders, writers and activists from across the US. I feel very honored and grateful to have a wider audience (and a little nervous, truth be told). I’ll have a post up today, so keep an eye out.

Morning

There’s a stillness to morning
just before the sky turns slowly silver,
before the reds become gold
that calls out,
kindly asking for attention,
it’s voice gentle and cool,
commanding and humble.
It keeps me from returning to sleep
with promises of discovery,
the smell of ancient spices on its breath
stirring the heart of the explorer within me.
I am moved, literally, to boots and hat and boat,
allowing my eyes and ears to be filled
with peaceful resolve
and my heart with itself-
the part that hears its own voice again
alone on the water.

DGS

The Secret Weapon in HIV Treatment

“I’m not taking my meds.”
That was out of the mouth of an HIV+ client more than halfway through our session.
I’ve heard this before and I wasn’t ready to go into emergency mode- yet.
“How long has it been?”
“Almost six months.”

OK, I’m in emergency mode.

The most effective HIV medication regimen is faithfully followed every day. There is room for a few lapses, but most experts agree that between 93-95% compliance with medication is necessary in order to utilize the full effectiveness of the medication and maximize the length of time the meds will work for an individual.

Skipping a dose or two of medication may not be catastrophic, but it does usually create a spike in viral load which in turn strains the immune system.

For people with HIV, who have immune systems which are “always on,” that strain can have visible consequences such as heavy fatigue, memory and other cognitive difficulties and a susceptibility to secondary illnesses such as colds and flu. There are also the side issues of depression and anxiety which can easily accompany any illness.

I was especially concerned because this client was still on the first regimen prescribed, and it’s generally believed that the first regimen will last the longest, so it’s important to help people maintain adherence from the start. HIV is a tricky little devil, it’s prone to mutate relatively quickly and develops resistance to treatment at a clip that keeps researchers working to create new medications and strategies at a steady pace. Stopping medication can speed up the resistance process.

But there are several other things that I know.

I know this client had been diagnosed with a high viral load right from the beginning, that he really had little choice about whether or not he was ready to commit to a lifetime of daily medication, treatment was necessary immediately.

I know that people who have to start medication very quickly after diagnosis are often overwhelmed by the shock of the news and the needs/fears involved in telling support people/families/partners, etc. The sudden worries, anxieties and frenzied thinking can last for quite a while. They are not always in the best place to make a lifetime decision. People in that stage may have to depend on loved ones to help them with treatment adherence.

I know that it’s vitally important that a PWH (person with HIV) be ready to commit- treatment adherence is much higher for those who have taken the necessary intellectual, emotional and physical steps to understand the importance of medication in their lives. One of my friends (who knows more about HIV meds than many doctors I’ve met) has said mental readiness is just as important to consider in making the decision to begin meds as Viral Load and CD4 counts. It’s that important.

I also know that HIV, untreated, damages the human body in ways that we may not realize for many years- it may be “dormant”, but it’s not idle. There seem to be two camps here. The first says everybody should take meds as soon as they are diagnosed to stop the damage of HIV in the body and lower the possibility of transmission to others. The second says that the meds and the accompanying side-effects are more damaging than HIV and one should resist taking them until they absolutely have to.

I tend to go towards taking them earlier than later simply because most studies (including the most recent) show that early treatment significantly prolongs life and health, and if I live longer, I might live long enough to be cured, or at least have a more effective treatment.

Having said that, I didn’t have a choice. I was one of those whose first diagnosis was HIV/AIDS- my CD4 count was 101, well below the AIDS definition line of 200, and I was very sick. It was important that I get on meds as soon as I could. And I did- the very next day, in fact. And I haven’t looked back.

I’ve missed one dose in 3 years, and that was because I was traveling in Europe and got the time changes mixed up. I’ve made taking meds part of my life, a good part, because I decided very early on that I wasn’t going to suffer because of my treatment.

When my doctor and I chose a treatment option, she explained to me the importance of taking them at the same time every day, and that my particular medicines required food to work properly. She then said, “Okay, let’s talk about the side-effects.” I quickly said, “Let’s not. I don’t want to put that stuff into my head right now. I’m just going to anticipate not having any if that’s all right with you. If I feel something weird going on, I’ll call you, okay?”

It was. And so my relationship with HIV meds was established on my terms, and (ironically?) I haven’t felt most of the things people often report while taking them. I also know that it’s a verifiable scientific fact that people over-report side-effects, and I just didn’t want to go there.

I have an interesting relationship with my medication. I refuse to hate them- they’re saving my life, and I refuse to complain about them for the same reason. I take my pills every morning, and I do something that some people find hokey, but it works for me. I hold them in my hand right before breakfast, look at them and say “Thank you. I hope someday I don’t need you,” and then I swallow/choke them down (there are 11 pills in my hand, including supplements).

So, as far as my client was concerned, I had a few issues to deal with:
1. I had to make sure he knew all the facts about the consequences of his “holiday”.
2. Was he then ready to get medical attention?
3. Was he ready to start treating his HIV?
4. Was he an imminent danger to himself or others?

We talked for a long time, eliminating in my mind any thoughts of danger to self/others, and taking a good, hard look at the possibility of depression in his avoidance. He is not completely open about his status with his friends and family, so we talked about his need to have people honestly care for his health, and that included himself.

He also decided that this lapse had actually helped strengthen his resolve to resume his treatment. We then made an appointment with his doctor. On the doctor’s advice he resumed taking his medicine that very day, and has remained consistent as of this writing. So far his regimen is working and he feels more committed and now has more support from people in his life to help keep him on track. He felt good enough to give me permission to use his story.

It’s just this kind of support that counts almost more than anything else. If people feel loved and supported, they naturally want to take better care of themselves- they make healthier choices and that includes adherence to their drug regimen.

That support doesn’t just come from other people- So, if you’re a PWH, look for ways you can support yourself and care for yourself-do something nice today, just for you. If you know and/or love a PWH, tell them how important they are to you- show them you care.

Simple? Yes, but the simplest options are often the easiest to overlook, open secrets if you will, and they can be extremely powerful.

Powerful enough to save a life.

…as sleep was flitting about my head like some annoying summer insect, I quietly gave in, leaving the world of information and business for the infinitely more pleasant world of nonsense, terror and transience.