I want to get personal about why this event means so much to me.
want to do that by introducing you to my late friend Jon aka Sheena aka
Candy Apple. It was the 80s and Jon came out to the Hamptons (where I
was living at the time) to visit a dear friend who lived in the cottage
beside mine. That is how I met him, and it was the beginning of a
friendship that I will never forget.
I remember how he would
sneak over and tape a sign to my bedroom window so it would be the first
thing I would see when I woke up and lifted the shade. Signs that
read: "I'm watching you", and "I'm telling your mother", and other such
I remember that whenever he had just a little too
much to drink, he would start speaking in fake french to anyone and
everyone within earshot. I remember the looks on those faces as they
tried so hard to understand what he was saying, trying to be polite,
when he wasn't actually saying anything at all.
I remember how
whenever anyone left his home, he would always shout, "THANK GOD THEY
LEFT", every single time, no matter who it was.
I remember how he called everyone, "Blanche".
I remember how my face would hurt from laughing and how those little
muscles between each rib that you never seem to notice suddenly became
I remember that most, the laughter, which
was really just a bi-product of how much he loved living his life, and
how fully he did that.
Shortly after I moved to NYC, he called me
to come over. He wanted me to take a look at his eye. "I think", he
said, "it's some sort of sty, but maybe you'll know". And so I did.
And I never could get that day out of my head. How when I looked at his
eye, I could hear myself swallow and how I could not say the words
"Kaprosi Sarcoma", but instead heard my own voice as though disconnected
from my body saying, "that's not a sty...you really need to see a
doctor". I don't remember what we did that day because I can only
remember that one moment, that and the flashback of the man with the
cane that I saw at a party years before covered in lesions, how we
locked eyes because he knew he was dying and he knew that I knew too. I
never knew his name, but I knew too much.
My friend did go to
the doctor, and it was KS, and the rest of what happened felt like
standing at the front door of the express train, not being able to see
where you're going, whizzing past the local, the blur, and the only
thing between you and sheer terror was a small window and a false sense
of security. Or at least it seemed that way because shortly after his
diagnosis, the disease began to paralyze him. I was with him in the
hospital when his family arrived. It was the only time I ever saw him
cry. The next time I saw him was in hospice. I hope he heard what I
whispered into his ear.
The thing is, this is just one story of
many stories that are all a part of one sad story. Many have lost
friends, sons, daughters, lovers, spouses. It was a dreadful time of
suffering, fear and loss. In the years that followed, I was witness to
miracles in medicine, discoveries, testing, counseling, and medications.
It may not have happened in time to save my friend, but it happened in
time to save countless others.
So, that is why this benefit is
important to me. That is why I give what I can give in the form of a
postcard size piece of art. Because while I no longer work on the front
lines, I can still give. I give myself.
In memory of Jon Steinbacher.
Labels: art and craft, winter solstice