I Am Not Okay

I am not OK.  I may present with a fashionable suit and a smile, but that is my cover.  There are times when I feel like I am barely keeping it together.  Recently I had the opportunity to visit the New York City AIDS Memorial that is under construction in the village.  As I walked up to the beautiful structure, I was overcome with sadness and grief.  The memorial is built across the street from the old site for St. Luke’s Roosevelt Hospital.  This hospital was the epicenter of HIV care in NYC in the 80’s and 90’s.  I spent too many nights saying goodbye to friends.  Too many hours trying to explain the unexplainable.  Too much pain as I tried to be strong for others while my heart was breaking.

In those days, I would call Judy Peabody every Monday and we would go over our list of who was in the hospital, who was sent home and whose memorials were that week.   It sounds insane, but we weren’t the only ones with this system.  All across the country friends were calling each other to figure out who would plan the memorial, call the parents, close the apartment, take the pet, bring food to his boyfriend.  We knew that we had to be strong because our job was to bring hope.  Not the hope that someone would survive, most folks were aware that their time was limited, but the hope that they would be remembered.  Helping people to know that their life mattered and that the pain would soon be over.  Judy and I spoke on a regular basis for almost 10 years, then as Combination Therapy was made available, the calls got fewer and farther between until one day they stopped. 

This should have been a joyous time, but to be honest, at the beginning, I approached Protease Inhibitors with caution.  All too many times we were told this was the answer only to find out that it didn’t work.  I learned to moderate my expectations because I needed to protect my heart.  All the years of fighting an epidemic had put up walls that were unwilling to come down. I don’t want to talk about the pain because it feels too big, too overwhelming. 
Instead, I go to the New York City AIDS Memorial and break down in a public park.  There is no crying in public parks.  There is no crying in public. We have to talk about what happened. My silence feels almost like my guilt.  My guilt is that I survived. 

This is my truth, it may or may not have anything to do with you.  All I know is that there is a generation of us in pain.  Our silence creates a stigma about telling the truth and the lie is responsible for more pain and suffering.  I’ve had too many friends try to dull the pain away.  Given our life experiences, it is reasonable to be in pain, it is OK to not be OK. 

I’m on the board of the New York City AIDS Memorial, I want to thank the board members for creating this beautiful park as a place to remember.  Another amazing memorial is the National AIDS Memorial Grove. It's located in San Francisco in Golden Gate Park.  This year is the 25th Anniversary of the grove’s creation.  Please consider attending their annual Light Up the Grove.   I am one of this year’s honorees, but the truth is that I want to honor them for creating a garden in the middle of a park that is a living tribute to all the lives touched by AIDS. I’m not OK, but I am hopeful that will change. 

Yours in the struggle,

Paul Kawata
Executive Director


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