Reminding Myself

I watched a documentary called "We Were Here" tonight - I have been wanting to see it since it was out in the theaters, but somehow, I couldn't bring myself to watch it in a public place.  It is a film with interviews and footage of the "AIDS years" in San Francisco.

It was a difficult movie to watch, but at the same time, it was such a relief to watch a movie about the things that really formed me as an adult. I was not in San Francisco at that time, but I was in Portland and watching my friends get infected and die.  AIDS was the shaper of my entry into adulthood.

One of the men described this sense of never planning for the future - just paying attention to the now because you didn't know what the future would hold.  I could so relate to that idea. It was so sad and at the same time, so important to watch that film and to know that some of those folks made it through.  I can't even imagine it being worse but I know that it was worse for so many people. I am reminded how lucky I am.

roar

“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.”
― Mary Anne Radmacher

As part of the blogging class I'm taking with Liv Lane, we are posting and sharing "Brave" blog posts and linking up with each other, supporting and encouraging each other.  If you are so moved, I hope you will join us.

I do not consider myself brave.  After reading a couple of blog posts from my classmates, I knew that I couldn't just let them post without stepping out on the limb with them.

First off, I want to say that this blog is a manifestation of bravery for me. It is the place where I keep putting my voice into the ether.  For a long time, I didn't speak out, whispered, kept that voice under control. WildRumpusing is my commitment to myself.  Some days, I am brave, some days, not so much.  Here is one of my bravest posts up until today. And here is another.

As I looked in my archives tonight, I realized that there was one story that I have alluded to, but I have never shared here. Deep breath. Here we go.

I guess it was June of 1986 when Roby had a low grade cold that wouldn’t go away – some fever, feeling yucky, low energy- so I took him to see his doctor. I wish I could remember the guy's name because he was an evil bastard. I took him to the doctor’s appointment where he had a full physical and some tests were done. When he came out to the waiting area, he told me he had gone ahead and tested for AIDS (at the time, that was what we were testing for – not HIV). I reassured him – no way…he’d only been with Grant and AIDS was not in Portland…really. I drove him to work and dropped him off.

A couple of weeks later – after much agonizing and worrying, I got a call from Roby in the late afternoon. I did not have any classes that day, so I was home. It was around 3:00 or 4:00pm – I was not showered but dressed in comfy clothes for around the house. I would get ready later to pick him up after he got off work at 9pm. I answered the phone and it was him – almost unrecognizeable – he was sobbing.

“Hello?”
“Can you come and get me? I have AIDS…” and he began sobbing again.
Stunned, I told him I would be right there…the litany in my mind was so loud, but my heartbeat was louder, “Oh my God, ohmygodohmygod…” Both roared in my ear as I ran to change my clothes and brush my teeth. I paused to think about the fact that I hadn’t washed my hair before my rational mind took over. Who cares? Go to him.

I drove my yellow VW Dasher to Beaverton Town Square praying all the way, “Please let it not be true. Please God, let it not be true.” I went into the store and his co-workers all had looks of concern and compassion on their faces. I walked to the back room and Carol was there. She let me in the back room (employees only) and I found him there, still crying, but less hysterical.

“He called me on the phone and told me I have AIDS. He doesn’t treat AIDS patients, so he told me to find a different doctor. Then he hung up. I’m going to die. I don’t want to die.”

I led him out of the store and took him to the car. I didn’t know what to say or do. Once I started the car, I took his hand in mine and we held hands all the way to his apartment. He didn’t really talk much. He was almost numb – just quiet.

 At the time, getting an AIDS diagnosis was a death sentence. It was early on when we still didn’t know much and there were no medicines to manage HIV and AIDS. This was in the days when we used language like, “He’s been exposed to AIDS.” Later, this became an HIV positive diagnosis. In 1986, being exposed to AIDS meant you had about 2 years to live. People were thrown out of their apartments, lost health insurance, they were beaten up, families abandoned them. Ryan White was diagnosed that year or the year after and a couple of other little boys and their communities burned their homes to the ground. We were very afraid of what would happen.

That night, Roby told JM, Susan, JC and Bill from downstairs. It was a difficult evening – I felt that I needed to be strong, so I didn’t cry in front of him. I just kept reassuring him – “Maybe it’s a mistake. We will find a different doctor.” At one point, I went across the hall and I cried a bit with Susan. I was feeling so lost and devastated – what would we do? How could this have happened?

Later in the evening, we walked downtown for some retail therapy for him. I don’t remember buying anything. He just couldn’t stand being in the apartment that night. I was in a daze. I just followed him and tried to keep my brain under control. We called it an early night but before I left, he asked me the biggest favor I have ever been asked. “Don’t tell anybody.” Of course I agreed. This would start me on a path that shaped my entire adult life. We didn't tell anyone for 9 years.

When I went home, my parents were out and I just went upstairs and in a black, brand new spiral notebook (unlike anything I would normally write in for a journal), I wrote the following:
"Thursday, June 26, 1986 (technically June 27 at 12:09am)

The doctor told Roby he has AIDS. He called him at work and told him over the phone. Roby called me. He was crying so hard he could hardly talk. I picked him up from work. I felt so helpless. I didn't know what to say or how to act. All I wanted was to take him in my arms and hug all his pain away. But I couldn't. I felt a huge wall between us. I tried to put my arm around him, but he seemed to move away. I feel numb. I didn't cry until he told Jenny (M.) and Susan. I felt like I had to be strong. Susan fell apart and sobbed. Later in her apartment, she and I talked. I cried and she somehow knew that I needed for her to tell me it was okay. We talked for awhile. Roby loves her so much. So do I. Even Jenny and I talked. She held me when I cried and held my hand for a while. I felt as if we were friends just then.

I don't know how to feel. This has got to be a mistake. It has to be. I know this is selfish, but I don't want to lose him, I can't. Not now. Not ever."

I remember that I went to bed right after I wrote that. I put the notebook in my nightstand and turned off the lights. Later, my mother came home and checked on me as I was rarely in bed that early. She gave me a kiss on the forehead and closed my door after I assured her that I was ok.

The night that changed my whole life. 

16 Years Without Roby

Today, 16 years ago, Roby Starns died.  I still miss him.

Roby Starns, 1985, Aloha High School Theatre Awards Night

I know that it is difficult for people sometimes to understand missing someone for so long.  After all these years, it isn't the intense missing that I felt when he first died.  It doesn't burn or stab or throb. I don't wallow in missing Roby - I just miss him. I wonder what he would think about things sometimes or if he would like this music or this show or movie.  I think of him when I watch Kurt and his dad on "Glee" because I wish Roby's dad could have been like that.

All combined, Roby has been a part of my life for the last 29 years...only about 1/3 of my life happened before I knew him.  I think this kind of warrants some attention.  Missing is okay to me.

Roby at Hug Point, 1987

Most importantly, I think it is important to remember and honor him, our friendship, how he shaped me as a person (in good and bad ways), how our experience with HIV/AIDS and his death impacted me and taught me.  I love him still and always will. It may not make sense to anyone else, but it makes sense to me.  I believe I have it in perspective and I believe that I have carried on with life in many healthy ways.  One of the ways I have been able to do that is to honor my dear, sweet, obstinant, funny friend each year on days that are important - his birthday and the anniversary of the day we lost a beautiful soul.

16 years ago, today, at 3:04 AM, I lost my best friend.  Roby Starns, I miss you and remember you still.

Roby at Ecola State Park, 1989

Remembering Dean

On April 26, 1995, I lost my dear friend, Dean Cannavino.  He was an amazing actor, teacher, mentor and performer.  He was generous and funny and charismatic.  He died of AIDS.

I met Dean in the Fall of 1989 when he moved to Portland temporarily to star in a show with Northwest Theatre of the Deaf called "The Signal Season of Dummy Hoy" about a Deaf baseball player who was instrumental in creating the signals still used in baseball today.  It was a tremendous opportunity for me as an interpreter, as a signer, as a human being in the world.  Dean and I became fast friends.  Ironically, because I met him in his professional world, I always knew him as Dean. When he met people in the community, he introduced himself as "Dino" but I always called him Dean.

I remember so many things about my time with Dean (I'm looking for the photos to scan). Two memories stand out for me - one was just after a few weeks working on the show. I was at the middle school where I interpreted and one of the Deaf students asked me, "What are you doing now that is different?"  I wasn't really sure what they meant and I asked them about it.  The student said, "Your signing is different...more clear, something is different."  I knew immediately that it was from working with Dean, from working on the play, from meeting Deaf adults in the community instead of languishing - linguistically- in K-12.  I knew immediately that I needed more input so that my output would continue to improve.  I was SO LUCKY to have opportunities given to me where I could grow and be with people who were so generous and willing to mentor me.

The other memory that stands out is the memory of the closing night party after "Dummy Hoy".  It was at Dean's house (where he had been living during his temporary stay in Portland) and everyone was there. I was shy and not a member of the cast - I had served in other capacities for the show.  I so wanted to just follow Dean around and cherish every moment with him, but so did everyone else. He was incredibly charismatic and people just gravitated to him. Slowly, after everyone had eaten, people started leaving one by one...pretty soon, having no purpose, I started collecting dishes and cups and cleaning up.  Eventually, it was just Dean and I in the kitchen trying to avoid the end.  When we realized it was just the two of us, we both sheepishly admitted that we didn't want to say goodbye.  We had a good cry over it and promised to stay in touch.  I didn't think we would.  We did. For many years.  He went home again, but it wasn't long before he realized that he missed the Portland community and came back.

I have lots of other memories, obviously, but those two are the ones that came to me today as I was remembering him.

I miss you, Dean. Take care of Alan for us.

World AIDS Day 2010

 

This day is not a cause or a movement or a day of education to me. This is my personal Memorial Day. My life as an adult was shaped by the spectre of AIDS and HIV. Many of the people who taught me American Sign Language were taken by AIDS. Ambassadors, all. Generous, funny, young handsome men. My best friend and soul mate was taken by this disease. Many others I have known and many who never told me they were sick have lost their lives in the battle.  This is Memorial Day for me.  

Tony Kushner said it best in "Angels in America: Millennium Approaches":

"This disease will be the end of many of us, but not nearly all and the dead will be commemorated and will struggle on with the living, and we are not going away. We won't die secret deaths anymore. The world only spins forward. We will be citizens. The time has come. Bye now. You are fabulous creatures, each and every one. And I bless you: More life. The Great Work Begins." 

In loving memory of Roby Starns, Chris Roper, Dean Cannavino, Alan, and Dan. You are not forgotten.

It Isn't Over Yet - World AIDS Day 2009

Sadly, people are still contracting, living with and dying with HIV and AIDS.

Today, learn what you can. Do something to help. Donate time, money or love.

In loving memory of Dan, Alan, Dean, Roby and Chris and the countless others we have lost to this disease.

"This disease will be the end of many of us, but not nearly all and the dead will be commemorated and will struggle on with the living, and we are not going away. We won't die secret deaths anymore. The world only spins forward. We will be citizens. The time has come. Bye now. You are fabulous creatures, each and every one. And I bless you: More life. The Great Work Begins." - Tony Kushner from "Angels In America: Milennium Approaches"

What moved me tonight

For some reason, I fell down the rabbit hole of YouTube again. I always call it that...it is such a crazy, wondrous place where I can waste far, far too much time.

Tonight, I ended up being moved by this song - "Praying For Time". First I listened to Carrie Underwood's version on "Idol Gives Back":

Carrie Underwood – Praying for Time on Idol Gives Back 2008


Then George Michael's version:


This led me to "Love is in Need of Love Today". Roby and I fell in love with this song and it suited us perfectly on those nights when we were mourning the loss of our innocence and the fact that he had HIV. I think we thought somehow love (something) would swoop in and save the day. Save his life. It didn't. "AIDS going round, breaking many hearts. So stop it please before it's gone too far."


"Love. Give the world love." Yeah. That.

Tomorrow is World AIDS Day

In memory of Roby Starns, Dean Cannavino, and Chris Roper.