Friday, August 29, 2014

The Normal Heart, AIDS and what we should have learned but didn't

If you haven't seen The Normal Heart yet, go watch it now. It was deserving of every single nomination it received at the Emmy's this year.

I had been meaning to watch it for a while now, but was fighting with our satellite provider. I finally got it recorded and had a few hours to myself yesterday to sit and just be with it.

I mentioned watching it on the almighty book of face, and most people talked about how sad it was. And it was. God, it was.


Mostly, though, it made me angry and reminded me of all the things I saw, the places I went, the people I tried to help, the stories I heard.

I grew up in the 80s, about a decade too young to fully grasp what was happening in real time in the early years of the epidemic. I remember hearing things on the news about people who were sick, about strange cancers and mysterious diseases that otherwise young and healthy people were dying from.

Then Ryan White hit the scene. He was a kid with this disease that, up until that point, had mostly been one that infected gay men. He was a kid, shamed and attacked because of the assumptions people made about him and who he was and what his family was like.

All because people didn't know.

No one really knew what was going on at the time.

What had been happening, for years by that point, was that gay men all over the country were becoming sick and dying. Their stories didn't make it into the news. They were refused treatment by far too many within the medical community. They were shunned by their families.

Misinformation spread like wildfire, but at the same time the story didn't really hit the mainstream until a little boy in Indiana got sick too.

Thousands of gay men were dead by then.

It wasn't until a couple years later that President Reagan finally said the word AIDS in a press conference. Years.

Then he pledged to help find the cause and a cure, but cut the meager funding the disease had been given.

By the time Magic Johnson announced his HIV status in a press conference, we knew more about the disease, but the stigma was still there. It was still largely a disease of gay men, but we knew by then that it was transmitted by blood and through sexual activity. We knew that hemophiliacs like Ryan White were at risk. We knew that IV drug users were high risk. We knew that women could get it and transmit it too.

By then, there were some treatments, not for the virus itself so much as for the side effects. AZT was the first and it often did more harm than good. Later on down the road there would be antivirals and more medications aimed at not just lessening symptoms but extending life. There are now people (those with the financial means to afford the treatments in the early days especially) who have lived for many decades with the virus.

I remember standing in the garage with my father watching Magic's press conference. I knew then, at the age of 14, that I had to do something.

I'd attended fundraising walks and done tons of research on the condition in college, reached out to AIDS Project Los Angeles. I volunteered in area hospitals caring for babies born to HIV positive mothers. Even then, in the mid 90s, there were volunteers who were afraid to touch the babies.

It wasn't until I was in law school though, that I really began to understand what this disease had done. I started working in a pro bono capacity with an AIDS clinic. To qualify for our services, clients had to be HIV+/AIDS diagnosed and meet income requirements. While most legal clinics helped with specific issues, we helped this specific population. By then, that population included women and men, young and old, gay and straight.

Most of our clients were still gay men. They taught me so much more than I could have ever hoped to help them with.

If I had to guess, the average age was about 40.

They had for the most part been modestly wealthy, or at least financially stable before this disease invaded their lives.

They'd spent every penny they had on treatments, on traveling to Mexico seeking alternatives.

They'd spent whatever was left of their life savings on the assumption that they were going to die.

They ran up credit card debt because they figured their days were limited.

They were fired from their jobs, they were shunned by almost everyone who knew them.

If they hadn't been fired, they quit because they were too sick to work.

If they applied for Social Security Disability, they were fairly often denied.

They were denied the chance to rent property, landlords tried to evict them.

They were disowned by their families.

They were unable to stay in the closet when the lesions started to show up, because everyone assumed that they were gay. Even if they'd been hiding that for their entire lives, the lesions outed them.

They'd lost friends, lovers, companions. Some had lost almost everyone they knew.

By the time these men came to me in the late 90s, this disease had stolen just about everything from them, left them financially ruined, without families, without the friends who'd already died, without jobs, without housing.

We helped them with all of it, the aftermath of what this virus had done up to that point. We fought landlord/tenant disputes. We referred employment discrimination cases. We filed Social Security appeals. We had lists of medical resources. We dealt with a ton of debtor relief issues, helped them file bankruptcy.

We helped some of them as they tried to get back up on their feet. Healthier now because of the treatments, they wanted to be able to work again. They wanted out of debt. They wanted to find jobs. And no one would hire them. They were so far in the hole that they couldn't get out.

A few of them told me they wished they had just died when everyone else did.

We wrote advance directives and wills. So, so, so many of them came to us for that. I couldn't even tell you how many interviews I did, how many wills I drafted. The vast majority of them had nothing left, almost no one to leave it to, but they wanted to take care of whatever they could ahead of time.

I'd get calls to revise wills when those who were chosen to inherit things died first.

I brought a will to a man, a boy really, on the morning of his death. He was 22 years old without a penny to his name, but I did what I could to ease his worries in those last moments. I'll never forget his face, his eyes.

That scene in the movie with the Rolodex. That awful scene. The phone call telling you someone else was gone. Damn. That one brought out the deep visceral sobs in me because I've taken those phone calls.

It happened. By then the deaths didn't happen constantly, but they happened often enough.

My most memorable client was a man, in his mid 30s. He was HIV+ and had managed to keep his viral load low through meds. He wasn't sick, he wasn't dying, but he wanted to get his will done because he just wanted to make sure it was taken care of.

I sat him down to do the intake interview, and within minutes he was sobbing. He didn't have much, but he didn't have any family to leave it to. He came out when he was diagnosed. They'd disowned him, saying some horrific things in the process. He'd not spoken to his father in years and it broke him. He was carrying this burden and he hated every moment of it, he knew that it wasn't his fault, but it still felt like it was.

He said something to the effect that he wished he'd been born to a different family. I told him that although I couldn't make that happen, there was something that I could help him with. If he was interested.

I was totally talking out of my ass at the moment, if I'm being honest, because I had never done a petition like this before and didn't have any clue how to do it or what it entailed.

I told him that he could change his name. Legally. He could reinvent who he was, be a man of his own. It ended up being a fairly simple process, actually. There were a couple of forms, a notice requirement and a hearing and it was done.

He was so grateful and in that moment I really began to understand what life was like for these men. I'd visited them in their homes, seen them in the hospital, talked to them for hours and hours. That day, though, it really hit me.

He'd lost everything from this disease even though he wasn't sick yet, but I'd helped him get a little bit of it back.

Seeing the movie yesterday brought it all back.

I haven't been working in that capacity for years, and I wonder all the time what things are like for those living with HIV and AIDS now. Is it different? Is it better? How many of my clients are still here?

When the news of Ebola started to hit the news, I saw the same irrational paranoia begin again. The transmission methods are very similar between the two diseases. The stigma is there all over again now. The misleading reports on the news. The people who live insulated lives convinced that others present a threat to them.

It broke my heart because we should have learned. We should have, and we haven't remembered those lessons nearly as well as we should have.

Partly, in fact primarily because of HIV and AIDS, we have universal precautions now...the very strategy that will serve as the best defense we all have from Ebola. We're better equipped to fight Ebola because of AIDS, not in spite of it. 

I hope that we don't make the same mistakes over again. I hope that we can use our hearts and our minds to help others who need it, not lash out against them in irrational fear.  I hope that the government directs the necessary resources in a timely fashion, that it refuses to brush this under the rug for years and years. I hope that things are different this time around.

I hope.

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