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Breathe. Focus. Balance.

Picture of balancing rock, by Juan J, Flikr
(photo by: JuanJ)

I admit that I am an erratic blogger.  When I started writing again a couple of years ago after a nearly decade-long break, there was a lot of pent-up inspiration to produce posts regularly.  What exactly I wanted to write about has taken a few turns along the way as well, but today I’m feeling a need to return to what prompted me to blog in the first place.

This blog started out as a personal journal of my own story and journey of dealing with illness.  It was an indulgence, and a form of personal therapy. It would serve as a way to keep close friends and family informed about how I am doing with my own health. And yes,  I hoped it might prove to be encouraging to others interested enough to read it.

A big part of my quest the last few years involves examining the paradoxes of AIDS specifically, and health in general and the documenting has become a part of that journey.

When I get the occasional email asking for advice or suggestions from others who have found this blog because we share something in common with our experiences, I can only reply by saying I don’t have answers. I try to share the most important things I have learned here, but I hope that readers realize that I’m much better at asking questions than I am at providing answers.

I find myself more involved with a community of folks with very little in common, other than this thing called “AIDS dissent”, only to be astounded that isn’t a sufficiently important cause for all concerned to put aside personal differences and reign in bruised egos to collaborate.

On a more pozitive note, in the last two years I have discovered and connected with a small and hopefully growing circle of mostly like-minded friends, specifically a group of other poz gay men who are questioning why our community has settled for such less than satisfying answers about the crisis known as “AIDS”.  I hope that together we might find new and creative ways to chip away at the social prison that I have willingly, if not unwittingly helped build.

I don’t know yet what my role is exactly, though I do think I must surely have one.  I should be used to that kind of ambiguity by now, as all of my life has been about self-defining a role for myself, rather than filling an existing job description. What I don’t want to be is a role model, let alone a “poster boy”.  I don’t know how this story will end.

Like my blogging, my life seems to be a series of lurching starts and sputtering lulls.  The year began with high expectations and some energetic anticipation.  I played a role in creating a new home and management system for the dissident forums now known as QuestioningAIDS. A garden that has helped to feed us all summer long was planted, and we took the plunge to revamp our meager personal retirement plans.  I kept physically busy all day with home projects early this Spring and even helped friends with some of theirs.

At some point, my batteries ran down.  The gas tank dried up.  The spring became unwound.

That familiar companion—fatigue—returned with a vengeance. I could not get through most days without taking a nap or naps.  Soon I was sleeping more hours than I was awake.  My body was not strong enough to serve my wishes, or even some of my needs.  At one point a couple of months ago I started to fall down again, as my ankles simply gave out from under me.

I’m not sure exactly when this latest bout with such severe fatigue began, but it was close to the time that the Bell’s palsy appeared in March.  That condition has much improved physically in the last six months, though I still have some minor difficulties speaking clearly sometimes, and I cover my mouth a lot while eating in public, for fear of food falling out.

There could just as easily be a correlation with the increasing conflict I found myself caught up in with some of those around me, as well as those who try to call me out just for marching to a different drummer.

Or a combination of things or perhaps no particular reason at all.

Regardless of cause, the challenge is the same as it has always been: balancing my own needs with the energy that I do have and trying to learn what works to improve my energy. Ultimately it seems to be simply a waiting game… allowing the pendulum to return on its own, though I can’t help but try to make that happen more quickly.

I am realizing that this tendency to fluctuate permeates other aspects of my life and my struggle to regain my health. I am eating more raw foods, for example, but I also have to deal with a sudden weakness for chocolate malts and other indulgences, though I remind myself how rare those lapses are compared to my past.  Don’t I get some points for improving, if not being perfect? I find myself naturally whispering self-affirmations when falling asleep or as I wake up, but it’s been quite awhile since I’ve achieved a deep meditative state, or even one of the extended periods of internal quiet and stillness that I first discovered as a neophyte shaman. I will start by remembering to breathe deeply.

I think I know what I need to do, but in the process of day-to-day living, I just as easily forget those things and revert to habitual patterns.

These energy lulls—call them depressions, if you will—have been a part of my life for as long as I can remember, and they do seem to be cyclical, though I can’t say there is a definite pattern or rhythm. They have always come to an end and my strength and energy returns.  I’ve no reason to doubt that will be the case this time as well.

While my physical energy remains low, I sense lately that my mental energy is starting to return and there are a number of projects and possibilities that I find myself getting caught up in that excite me.  The return of cooler weather beckons me to try to get some outdoor projects completed before leaf harvesting season is upon me and the snow starts to fall.  Once winter comes I will be looking for projects to keep me occupied indoors and that will probably include more time online, including blogging.  I already have another draft post sitting in the wings.

Stay tuned.

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  • 97

    97. That’s my latest CD4+ count, less than half the count from six weeks ago.

    That’s it. I have tried as many alternative treatments as I can think of to reverse the decline. I will be starting my third round of pharmaceutical ARVs as soon as I can get a prescription and fill it.

    This decision has been a long time coming, and in hindsight, I probably should have restarted a few months ago. There’s nothing magical about 97, or being below 100, but it’s as good a breaking point as any. I’ve long argued that there are two things to keep in mind about CD4 counts: one is the long-term trend; the other is single- or low double-digit counts.

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  • Reduce AIDS drug toxicity and side effects

    I embarked on my third course of ARVs since 1998. For ten of the sixteen years I have been HIV-positive, I was able to manage well enough without ARVs and I continue to believe there is no reason for otherwise healthy HIV-positive—let alone negative—gay men to take these drugs. To those who want to wave a recent study about the benefits of early intervention in my face, I would ask them why they put so much faith in a science that has utterly failed us to date.

  • Retreat and Adventure — Midwest Men’s Festival

    When I received my HIV diagnosis in 1998, I withdrew from my community of gay men. I “went to ground”, thinking that isolation was the only safe place to avoid being criticized for seroconverting at such a late date, when we were all supposed to know better.

    This past week has been yet another bifurcation point in my life. I returned to a community I have known about, if not been a steady part of, for more than 30 years. A community of men whom I could touch and hug. Men whose tears might wet my face and whose body heat and life forces I could feel in ways that can only happen in person. It really did feel like coming home.

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