According to

According to
According to the 01/09/11

Wednesday, July 15, 2015

Tomorrow, Tomorrow I love ya

When I'm stuck with a day that's grey and lonely
I just stick up my chin and grin say, oh

We all the lyrics to that song.  I don't even have to say the name of the song and we all know it.  I haven't been able to shake the lyrics out of my head today. The whole drive up to Connecticut to start my LAST semester at grad school. How is that even possible? That your average guy goes from having a poor high school education to a Kent State University Honors Graduate, and in early January of 2016 Professor Charles Dale.  I can't begin to explain the journey except to say despite living long term with AIDS (which I'll talk about in a bit) I've worked my rear end off.  Tests in hospital, exams in fast track rehabilitation at a Nursing Home and more than once going to class with a walker, a cane or even a wheelchair.  I did exactly what was expected of me, and sometimes more –––– ask Dr. Jayne Moneysmith about The Gage Report, or Dr. Robert Miltner about my thesis.

I've spent nearly two years at Fairfield University writing about what it has been like living with AIDS, as of tomorrow it has been........25 YEARS!

Twenty-five years.

How did that happen? Where did the time go? I've written the following from my memoir:

Fulton Orsler has said, “Many of us crucify ourselves between two thieves ––– regret for the past and fear of the future.”  There is so much for me to regret, but where do I, and what do I begin with?  Like many people I’ve done things I’m not proud of: becoming an alcoholic and drug user, my becoming entrenched in a sea of anonymous, unsafe sex with men, and finally reducing my self worth to nothing.  It wasn’t all that hard to do ––  I’m not making excuses for the decisions I made, 

but they all played a part subconsciously in my wanting to die.  

My subconscious decision to die, it’s a dangerous and powerful statement....

 I felt my life had sunk so low at one point.  I couldn’t and wouldn’t pull the trigger on a gun.  That’s not who I am.  Overdosing on pills three times, only to get my stomach pumped.  What was left?  A slow, not so visible suicide of alcoholic binges mixed with uppers and downers.  No one would really notice what I was doing.  Sooner or later what I was doing would indeed kill me, mix into the equation unsafe sex with a sea of men, and HIV/AIDS would surely kill me if the pills and booze couldn’t.  Nearly all of the “bath house slut boys”, as they were known then, got HIV/AIDS –– even when it was just known as "the gay cancer", and most of them were dead within two years.  If someone wanted that badly to die this was “the safest way to do it”.

Turns out that I have trouble dying –––– Problem is I wasn't meant to die when I wanted too.

 I was never meant to survive ––––– yet from my friends in Florida, in the late 1980's, I'm the only survivor. There are no other voices but mine. I'm left to tell all of their stories. Wonderfully fun times, with people who float in and out of my memory or in dreams.

Somehow, someway I have survived.  A survivor.  Me.  A survivor.  I’ve never seen myself that way for some reason.  I’ve just lived the one day I’m in.  Living one day at a time. Days somehow become weeks, then months, then years and now, well now it's decades. In the earliest days of my diagnosis, I felt HIV/AIDS gave me no promise of tomorrow.  

I think now of Michael on the eve of his death, his skin, and bone appearance, his slight breathing; the anesthetized glaze of his eyes as he held on longer than any of us thought possible.  My brain morphs to what I need to remember versus what I want to remember; the friend I cherished and the man who became my first lover.  Those earliest years after his death, pallid nightmares floated through me ––– the blue of his eyes bulging from his skeletal face, his chapped, drying lips rasping for air. I am reminded now of my early gay brothers in arms whom I’ve seen survive lover’s or best friends. Death offers no real reprieve, no absolution, just the brutal reality of inescapable demise.  All of us, gay or straight, who have lost someone to AIDS, bear the same kind of battle fatigue. And those of us, who have been in the trenches and have suffered immeasurable loss, carry the brunt of that fatigue.  So many of us who have suffered this kind of loss once again turned to pills, alcohol or drugs, anonymous sex, or even all four at once, to ease the pain of that oppressive loss.

Most of us now, I think, have become apathetic and complacent. There's no more anger. There's no more fear. There is no real sense of community. We've become homogenized. We think Prep is the answer when some guys only use it as a morning after pill. That doesn't work. That's not how that treatment is designed. I have a friend who has never been compliant with his HIV drugs, is only currently only on ONE drug and then wonders why he's ill. He's never applied for SSI/SSD, Medicaid, Medicare and then wonders why he doesn't have anything. 

 I met a young  man last December living with AIDS on the streets of NYC. His best friend, also living with AIDS, froze to death on those same streets! Where is the "new" Larry Kramer to be the warrior for long term survivors or even the newly diagnosed? Why hasn't the African American church reached out to those of us who are long term survivors to help provide hope and encouragement to the newly diagnosed?

In those earliest years of AIDS, the intimate memorial services at somebody’s home had become a source for cruising.  Rooms were filled with gay men in dark suits, with cocktail in hand, a cigarette in the other hand between perfectly manicured fingers, and at their fingertips horderves.  Small prattle about how someone’s suit was last seasons fashion, and dear lord who would wear those shoes with, well, with anything.  It seems like it all came down to mindless dribble and one huge bitching fest or outright cruising and leaving with your next trick.  How had death been reduced to something that felt so horribly wrong?  Or was it, the only way some could deal with so much death, all of the dying, and finally all of the grief?

So many died, and I cannot or will not blame those who did what they did, or didn’t do what should have been done.  I have no hard feelings about how some of us chose to live with our grief.  Grief became personal. It became a part of me.  At this stage in my life, as I near fifty, I’m trying to not let all of that past grief consume me.  I’m trying to not let the past overpower or devour me.  It has been a process that doesn’t come easily and I am doing everything I can to live in the moment.  Those events, and that time have become something I have survived.  It has made me stronger.  It made me into the man I am today.  You know something I would do it the exact same way all over again.  I don’t know who I would be without my past.  I don’t know who or what that man would be like.  I do know who I am.  I know where I have been.  I know what I have survived and I know what I cherish.  I cherish living.

I applaud my fellow long term survivors, people like: Greg Louganis, Jack Mackenroth, Sharon Thomas, Jon Brittan, and others but why isn't there some form of study going on involving long term survivors? John Hopkins is doing studies on the effects of growing old on AIDS and the medication, and then the effects of AIDS and it's medication on growing old. But nothing on the effects of AIDS and long term survival.  If....... these new class of drugs make life with HIV/AIDS a chronic illness that is manageable, which is what the CDC is saying, then we are going to have a HUGE influx of long term survival patients that we will nothing about, because we aren't doing anything now!
In my 25 years with this disease I can say I have seen the depths of despair and hopelessness as well as over powering grief. However, I also have the education I have always wanted, and am debating going further and get a doctorate. I have a comfortable life, in a nice neighborhood, and friends and family who adore me..... and the feeling is mutual. All in all I have been blessed. I can't imagine my life without this disease in it. AIDS has made me who I am.

But.......the latest struggle is somehow adapting to a new disease that there is no treatment for, no possible cure and in its time will either:
A). Make me fully wheelchair bound, and paralyzed.
B). My facing surgery, where a morphine pump is installed in my back.
C). Have me dying in agonizing pain.

I’ve had X-rays, CAT Scans, MRI’s, full body scans, spinal taps, heart tests, and bone density tests.  I’ve been told its Fibromyalgia, lingering after affects of having had shingles almost twenty years ago, Neuropathy, and a long term degenerative disorder because of having AIDS for so long.  I’ve been hospitalized for it, put into rehab for it, and treated with at least ten different medications and nothing works.  Nothing.  The pain at times can be so bad it affects my sense of balance, which then affects my ability to walk. Yet, nothing is ever found.  This physical pain I suffer is more than branding.  I’ve been torn completely apart and the pain is the lingering aftermath of losing someone I cherish more than anything or anyone else.  Is it no wonder there is no diagnosis?  No wonder the wizard can’t find anything in his bag for me?  No matter how many times I click my heels, I can’t go home!

Some options huh. AIDS-Related Myelopathy. Long term Progressive Degenerative Disease. "We're so sorry Mr. Dale." Almost 13 years to hear that diagnosis. Walking at the grocery store or the mall –––– not an option, I'm in a wheelchair. More than twenty feet, for the most part, is with a walker. My nerves are being destroyed. I struggle with how do I work with this? How do I get a teaching or writing job when there are times I sleep the whole day away? I know I'm probably putting the cart before the horse, but I see this as changing everything I know. I can't imagine any employer wanting to "take me on" credentials or not. A good New England Jesuit Catholic Grad School Program or not.
Deep down I think there is hope. I have to hope, right?

Just thinkin' about tomorrow
Clears away the cobwebs and the sorrow
til there's none......
the sun will come out tomorrow
So you gotta on
til tomorrow, come what may

Here's to 25 more!