I see the journey, the path I have taken like the wake of a great ship.
I make posts on facebook that people don’t seem to get, maybe its because they don’t really read them or more likely I poorly communicate what is on my mind. So the other day I post something and it began with my fears, which is naturally what most people focused on. I am not a delicate flower. My emotions can be fragile but my mama taught me to be tough. I am afraid of getting out in the world with a blind man’s cane. I am not afraid of getting lost. I am not afraid of falling. If I fall I will pick myself up. If I get lost, well I will figure out something. I will have to go through mobility and orientation training at Lighthouse for the Blind and I am sure it will be helpful. I have to do this to qualify for a guide dog which is my ultimate goal. The source of my post was another post from an acquaintance that I saw. She is on a cruise and she thought it would be cool to take a picture of a stranger without his permission I am sure and the fact that this poor man was wearing what looks like condoms on his big toes. She posted it to entertain others, so they could comment on what a freak and what a joke he was. It was mean to me. It should be mean to everyone. We have become like eternal high school students making fun of others we feel are beneath us. It saddens me and the reason I posted what I did was this knowledge that in walking around someone will take my picture and post it on facebook so their friends can make fun and make themselves feel a bit better about themselves. I know there is kindness left in the world. I have a few, a very few people in my life who are so kind it makes me cry. Sadly though I have too few of these people in my life. People either want something in return or they simply don’t want to do a kindness for a person with limitations that might really appreciate their help. We don’t have a problem buying someone’s coffee at Starbucks and then posting what good people we are for paying it forward but guess what; the people buying coffee at Starbucks don’t need their coffee bought for them. If you want to do something kind, then do something kind for someone who really needs it, but that’s not how our world works.
In the late 1980’s I went to work for a free standing psychiatric hospital called Willow Creek. I had actually applied there a few times when it was just an adolescent hospital. As an adolescent hospital it had two giant units, one for females and on for males. The units were identical, with a giant pit dug out of the middle. When the hospital started treating adults they took one unit and re-configured it. That was the adult unit. It was a mess to work in, too many nook and crannies for things to happen which you could not see, The other unit was changed in that they boarded up the put and made it co-ed. Depending on need they switched adolescents and adults around. I was hired to work the adult unit. I was seriously burned out and looking for something. I was listening to a lot of music and already in love with the music coming out of Seattle way before this music hit and took over the airwaves. I spent money getting my hands on anything and everything. I had nothing holding me back and what I wanted was to pick up and leave for Seattle but I didn’t and it is one of the few regrets I have.
By that time HIV was on everyone’s mind. I had already lost friends and by the late 80’s everyone knew it was no longer just a Gay problem but one that was killing heterosexuals as well, and IV drug users. The fears were completely irrational. People thought and acted as if you could catch it from anything, public toilet seats, breathing and many other irrational things. What we knew and didn’t know about this horrible disease could fill volumes. So in this environment of fear we admitted a man to our adult unit suffering from AIDS related psychosis and he frightened everyone from patients to staff. There were nurses who quit and a big staff meeting where we were taught about AIDS. I was scared like everyone else. Our patient was a young man in his late 20’s or early 30’s. He was wealthy and was a big player in the Dallas Gay rights movement. I cannot watch the movie Dallas Buyers Club without thinking about him. There were two big issues with this young man. One he was psychotic and flamboyant. He would say anything and everything and it was all outrageous. The second was actually more problematic. HIV is a virus that impacts your immune system. People with AIDS get all sorts of things their body would normally fight off. This poor man had warts all over his arms. Naturally all of the other patients thought the were weeping and trailing virus everywhere. We did what we could to alleviate the fears and made sure that we wiped down counter tops frequently and we used a different blood pressure cuff for him than we did everyone else. It was actually quite sad. I was scared to death of him. He had a way of striking out at your vulnerabilities which I think was linked to his psychosis.
He did improve a lot in a short time. As a social worker I hated that he upset me so much that I was afraid of him. It was not his homosexuality because I had grown up with many gay friends who had protected me, loved me for who I was and many of these I knew had died from this horrible disease. He used to stay up late at night and one night when I was working night shift I talked to my charge nurse about what I wanted to do and she agreed to watch the unit.
And so I knocked on his door and he invited me in. I talked to him for hours. I have never laughed so much and cried and enjoyed another human being as much as I did that night. I was honest with him and he taught me a lot about HIV and we talked about death, He knew some people I knew and we shared some stories. After that we always talked a little bit every time I was there. I think he was the warmest, kindest person I ever met. Right before he was discharged a girl on the unit who was barely an adult was diagnosed with HIV. She was an IV drug user and she knew before she ever got her results that she was positive but seeing them, confronting it all was devastating. For a few days she was very suicidal. So this man one night when she was walking the floor stopped her and talked to her, talked to her all night. He had her laughing and crying and without him I know she would have probably killed herself. He spent most of his remaining time with us locked in conversation with her, doing more good than any medication or any therapist.
When he was discharged it was amazing to see how many people wanted to say goodbye to him, He had touched everyone there and while there were a few that were still afraid of any contact with him I stepped up and hugged his neck and thanked him. He died only a few weeks later. His family was so appreciative of what we had done that they wrote a beautiful card to the staff thanking them and sent us a ton of food most of it very expensive stuff that was all over the hospital. I think of him so much and yet it upsets me each time because I don’t remember his name. Of all the many bad things I have done in my life it seems the worst that I forgot this beautiful soul’s name. At one time I had his obituary but somewhere in my life’s journey I lost this. I will not search for his name, I will not search obituaries. I should have remembered it, I owed it to him to remember and I failed. Oh I know he would not hold it against me. He would laugh at me, make a comment that would get right to the heart of the matter and then he would hug me and it would all wash away.
I wish it could be that easy. Rest peacefully gentle soul. You did far more for me than I ever did for you.