The house is on fire.

The nursing home I was sent to was just blocks away from the house where I grew up.  I'd walked past it on my way to the library as a child or on my way to the drug store where I would buy Noxzema and Wet 'n Wild cosmetics, hoping they might make me beautiful.  But I'd never had cause to go inside; I didn't know anyone in a nursing home.  My parents had children young and their parents had them young, so a nursing home situation was never on my radar.

But that day, I was in my mid-20s, navigating my Honda Civic through the streets of my home town, reminiscing about all the summers I spent reading in the library (yes, I was a giant nerd until about 10th grade); riding my bike through the neighborhood, with no particular destination; desperately plotting my escape in my bedroom with the wood paneling my mother wouldn't let me paint and the yellow flowered curtains we never got rid of.  Even as an adult, being back there is an over-load of emotion: sadness, loss, hope, laughter, love.  I never knew I could hate something so much and still love it with everything I have.

My memories distracted me from the task at hand, which I remembered when I pulled into the parking lot of the nursing home.  I was an HIV case worker and I had gotten a call from a doctor a few days earlier.  There was a young man who was very sick and needed some assistance.  He was from a different state and his only living relative was his mother.  She was poor and couldn't afford to send him money to get home or come to be with him, although she desperately wanted to.  Essentially, he had no one.  But he did have an AIDS diagnosis and needed help.

If you don't know what that means, let me tell you: HIV is the virus that you can contract from a contaminated needle or coke straw, or from person, via blood, semen, vaginal fluid, breast milk or spinal fluid (although I'm not sure when you'd have the opportunity to come in contact with spinal fluid, it lives there too).  A diagnosis of AIDS only comes when you only have 200 or less white blood cells (the cells that fight infections when you get sick) remaining in your system or you contract one of a list of opportunistic infections, which are infections caused by bacterial or viral pathogens that do not generally cause illness in a person without a suppressed immune system.  For example: if you get a yeast infection, it might be gross but you can treat it with medication and it will clear up.  However, if you are HIV positive, a simple yeast infection could develop into a systemic yeast infection and it could kill you.  This is why people with HIV take medication to strengthen their immune system and fight off infections. 

I had clients who lived healthy lives with minimal medical issues.  They saw their doctors every 3 months, had blood drawn, took their meds religiously and went about their lives.  I also had many clients who had barriers to health, such as mental health issues, ranging from chronic depression to schizophrenia.  That made it difficult to remember to take medications or see your doctor.  I also know that most people, when given an HIV diagnosis, don't take a deep breath and say, "OK, doc, let's you and me tackle this together.  I know Bono's on board; how can I get on the high school circuit so I can inspire some people and shit?"  Many are in shock; they are terrified of what the future holds.  Some need to take some time to grieve, find support and then start treatment.  Others don't seek treatment at all.  You can't judge a reaction unless you've faced the same moment. 

I don't know how this young man's life went.  I don't know how he contracted HIV, when or why he was given an AIDS diagnosis and I didn't care.  My goal was to help determine what we and other supporting organizations could do to make his current situation better.  The woman at the front desk of the nursing home gave me big eyes when I asked to see this young man.  She didn't say, "You mean the one with the AIDS?" but she may as well have.  Ignorance is not unusual; people don't know what they don't know.  I once interviewed a woman who wanted to work for an AIDS organization; she asked me if she would ever have to be in a small, confined space with someone who is HIV positive.  We did not hire her.

I was told what floor he was on.  I asked if I could speak to someone familiar with his case and was told that no one really was; just the doctor who had referred him to the facility.  Fine.  I'm a pretty self reliant woman, I'll find him.  Stepping off the elevator, I was unprepared for what I would see.  A group of staff played cards at the front desk.  They glanced in my direction but didn't ask me if I needed assistance or who I was looking for.  Alarms were beeping everywhere and yet, no one seemed concerned by this.  The strong stench of urine and cleanser singed my nose hairs and I made the transition to breathing through my mouth immediately.   A woman sat in the hallway in a wheelchair; she was yelling about something, I can't remember what.  As I walked past her, she reached for me, her face conveying massive confusion and emotional pain.  I recoiled.  I hate hospitals and places where people are sick.  When I was 6, my grandmother, who was a nurse working with burned children, took me to meet all the kids on the burn unit.  I was absolutely terrified.  I clung to her, looking into the twisted faces of badly burned children, worried that if I ate the peanut butter cookie they'd given me, my skin would crinkle and crack too.  That's kind of how I felt at that moment; this woman was clearly experiencing dementia and while I felt for her, I was also scared of her.  I just needed to find my new client.

When I reached his room, I peeked inside.  All the lights were off.  An older white male lay in the first bed.  I knew that wasn't him; I had been told that he was in his 20s.  I could see that there was another bed behind the curtain, so I approached slowly, unsure.

The person laying in the bed beyond the curtain was dying.  That was clear.  It was a body so fragile; his skin was ashen and paper thin.  He was covered by a blanket but his arms were nothing but bones and his clavicle protruded from below his neck, painfully, like it might pierce the skin at any moment.  His face was all eyes.  When the face loses the natural fat and ruddiness of the cheeks, all that's left is a sharp jawline, jutting cheekbones and the outline of sockets.  Resting in those sockets were the biggest eyes I have ever seen.  He turned his head, an effort that has to be painful for someone so close to death. 

I had to catch my breath; I'm rarely caught off guard and almost never speechless.  But I was at that moment.  Softly, I said his name.
"Yes", he breathed.
I thought of all the standard questions I needed to ask a new client: where did you grow up?  What do you do for work?  Do you have a mental health diagnoses?  Do you use drugs or alcohol?  And on and on and on.

I couldn't begin to ask him those questions; the mere sound of my voice might fray his last nerves.  The effort it would take for him to answer could be his undoing.

"Do you want me to come back?" I whispered. 
"Yes", he whispered back.

I turned and left.  I walked down the putrid smelling hallway, past the woman, who was now sobbing with her head in her hands.  The staff continued to play cards, gossiping, laughing and eyeing me like I might be someone who was judging them, which is exactly what I was doing.  I know that you develop a callous over time; I totally get that.  But what is this?  Is this a job that you do because you want to do it?  Or is it just a job?

The elevator couldn't come fast enough to take me out of that hell hole.  I repeatedly punched the "down" button because somehow, we all think that will make the fucking thing move faster.

When I finally got out of there and into my car, I sat in the parking lot and sobbed.  Over the years, I had met many clients in various stages of illness.  I never felt pity; instead, I felt proud of them for seeking support.  That's not an easy thing to do.  I never judged anyone's situation or story.  Life is hard and I am in no position to play self-help guru.  Sure, some of my clients pissed me off over the years and some made choices that I didn't think were the best choices for their health. But until I met that young man, I had never been so deeply, deeply saddened.

Several days  later, his doctor called and said that his mother had come to collect him and take him home.  If he was able to get the right treatment and a good infectious disease specialist, he absolutely could have rebounded and gotten better.  If he didn't, it made me feel better knowing that he was with his mother instead of in that wretched, disgusting nursing home.  The thought of him laying there dead until someone came in to mop the floor made me sick to my stomach. 

Never before (at least to my knowledge) have we treated ill people differently because of how they may have contracted their illness and our superior, smugly moralistic judgment about it.  The reason I started working in HIV was pure outrage. The best thing I ever heard while I was doing this work was, "The house is on fire.  We don't have time to figure out how the fire started; we simply need to put it out."