I'm Still Standing

Friday, May 27; day number 27; T. -74 days

So in just 74 days I will be headed to Rome and Madrid for World Youth Day, but today I reflect back.

I was born in the mid-1970s with a condition called hemophilia (see prior posts and ). In the early 1980s, we heard about a condition that was affecting hemophiliacs that was first known as G. R. I. D. (Gay Related Immune Deficiency), later to be known as AIDS (Acquired Immune Deficiency Syndrome). The disease first became known in the gay community because of this there was a stigma attached to anyone who had the disease. However about the time that they started to change the name to AIDS more people were contracting the disease. Whatever you want to call this disease GRID, AIDS or HIV it affected my life in a huge way

I'm a survivor, but thankfully not of this disease. I never contracted AIDS or HIV and just how that is I will never know. However I watched many around me in a community bound together by hemophilia become very sick and many rapidly die because of this disease. They've classified my view as "survivor's guilt". I survived, un-infected, but not unaffected.

As a hemophiliac I need to receive regular treatments of medicine that at the time was directly derived from human blood. Many of the blood donors, hopefully unknowingly, were infected with AIDS. This infection was transmitted on through the blood product that my friends and family received. Keep in mind I was also receiving this blood product and I don't know how, but I did not get AIDS.

By 1986, 25 years ago, the death toll began to become a reality of my everyday life. Funerals became regular weekend events. I quickly stopped counting the funerals I went to, that was far too depressing. I do remember a few weekends where we were "funeral hopping" because there were so many in one weekend. I got so comfortable wearing black that became almost the only thing I would wear. At one point I made the decision that if I were to mourn one person for a year, I would be doing so for the rest of my life. So I have, I continue to mourn, and it is a rare day that you see me when I am not wearing something black.

Today I decided to watch a movie that I have not seen in many years. It stars Linda Hamilton and Joshua Harris. It is called "Go Toward the Light". It is the story of a young boy by the name of Ben Oyler who died July 4, 1986. Ben was my friend. And watching this movie rocked back so many memories of those years. And I made the decision that it's time for me to start telling some of my stories.

So let me tell you first of my friend Ben. I met Ben in 1985 during my yearly physical at Stamford's Children's Hospital in Palo Alto. During the course of my physical the nurse coordinator asked me if I knew what AIDS was. And since I was are ready very aware that it was affecting the community around me I quickly said yes. She asked me if I was afraid to be around anyone with AIDS. It's funny I still remember my confusion on why anyone would be afraid to be around someone with AIDS. I shook my head and said, "No, not at all." She then told me that there was a young boy about my age who is here the hospital who had hemophilia and AIDS, and she was wondering if I'd be willing to play with him. Again I remember my confusion, I was 10.

"Of course I'll play with him," I said. So they took me off to where he was in an isolation room. I think at first we played with hot wheels and Transformers but I do remember us going, at some point, to the playroom and playing air hockey and video games. I know I went to visit than a few times in the hospital and always have fun. Other than the catheters and other medical stuff around, you really could not tell that Ben was sick. At least not by his attitude, and that inspired me.

Over the next year or so a friend of mine, Bret would pick me up and drive me to Carmel where Ben lived. When we would visit at play with Ben and his brothers, Bret would take us out to the movies. Over time you can definitely tell that Ben was getting sicker.

In 1986, I went to a summer camp for hemophiliacs. I was so hoping that Ben would be able to go, but by that point he was already too sick. But his next youngest brother, Ben being the oldest, did join me at camp. I remember paying out a lot with Ben's brother. I even remember us talking about how much Ben would enjoy summer camp. When we returned back from camp, Ben was in their family van, and looked very sick and pale. We couldn't wait to tell him all about camp. But sadly with such a long drive back home Ben couldn't stay to talk. He looked so weak, not the Ben that I met. Little did I know this would be the last time I would see Ben alive. Sadly, I lost touch with the family after that.

There are so many others. So many more stories to tell Skipper H., Paul B., Shawn M., Bret L., David P., Alvin M., Jeffrey H., Terry S., David S., Stephen K., as well as my own uncle's George Renaldo and Anthony Renaldo, and so many others. To tell my memories of them would be far more than a single blog post.

But as I sit here… at the end of this movie… in tears… I am reminded of so many friends who died far too early in their lives. And me the survivor… 25 years later… still wearing black… I am reminded Paul B’s favorite Elton John song: “I’m Still Standing”

Click here to listen Elton John's "I'm Still Standing".

Lyrics

My Notes

You could never know what it's like
Your blood like winter freezes just like ice

Oh all the pain from this bod problem/now it has brought arthritis

And there's a cold lonely light that shines from you

sometimes people see the light but nobody knows that it's lit by pain

You'll wind up like the wreck you hide behind that mask you use

all I can do is hide the physical pain, and the pain of their loss behind a happy mask

And did you think this fool could never win

most days doesn't feel like winning

Well look at me, I'm coming back again

it's all I know

I got a taste of love in a simple way

the simple love of friends and family

And if you need to know while I'm still standing you just fade away

some days are harder than others to stand in sadly the memory of my friends does fade

Don't you know I'm still standing better than I ever did

least I like to tell myself I'm "standing better"

Looking like a true survivor, feeling like a little kid

I am a survivor, and I remember that feeling when I was a little kid

I'm still standing after all this time

takes a lot to keep me standing two metal knees and two bolts in my ankle  

Picking up the pieces of my life without you on my mind

and oh how my life and heart had been shattered into pieces

I'm still standing yeah yeah yeah
I'm still standing yeah yeah yeah

Look… I am still Standing…

Once I never could hope to win

it's hard to hope through pain

You starting down the road leaving me again

every time I remember them I feel the loss of them leaving again

The threats you made were meant to cut me down

I was a kid, other kids, never understood me, and being different, I was a target

And if our love was just a circus you'd be a clown by now

in the circus it feels more like a balancing act of the high wire

So, Yes! I'm still standing. But that is the memory of these friends and uncles that keeps me moving forward!