My Ignorance

I know what the end stages of AIDS looks like. I know the ending quite well, it’s the beginning that I’m apparently ignorant about.

I’ve spent the last couple of days reading personal accounts on living with HIV/AIDS, I’ve read various blogs (http://www.conversationsintime.blogspot.com/ is one of my favorites) and online journals and I’ve come to the realization that I know a lot less that I thought I did. I understand the dying aspect of the disease, but not the living with or how.

At the hospice, very few residents talk about their lives before they arrived, they don’t discuss the medications that failed them and they are no longer on any type of antiretroviral meds. Their T-cells are almost in the single digits and their viral loads are always extremely high. They are at the hospice to die, there is no fighting for life, there’s only trying to ease their suffering as best we can.

There are so many aspects to this disease that I don’t know or understand, not to say that I haven’t tried to educate myself because I have. I’ve read and researched and listened and YET my ignorance still surprises me. I recently spent hours upon hours reading about people LIVING with HIV/AIDS, and I was humbled and saddened because I know that some of the residents at the hospice are dying because they never got a chance. They didn’t know how to fight or where to turn, so they just gave up and now they are going to die when they could have lived.

I will embrace my ignorance because in doing so I will never become overly confident. I will always seek knowledge, and I will never forget. Always evolving, just like the virus.

Lines

There’s a resident at the hospice, recently arrived, very sick. One look and you know she’s not going to last long, frail, wasting, and aged far beyond her young years. She came through the front door with one foot already in the next life.

I’ve helped with her care, done what was needed, made sure she was as comfortable as possible, but I’ve done all these things at a distance. I don’t think, I just do.

Some patients break you from the start, they grab a hold of your heart and they don’t let go, the hospice is currently filled with my heart. Nearly everyone there has lasted longer then usual and I have developed bonds that I’m not sure I ever had before, and definitely not with so many at the same time.

It scares me.

I’m not sure what it will look like on the other side, when they all start to decline, and eventually our afternoon chats on the patio turn to bedside vigils as I watch them leave and know that they’re taking a piece of me with them.

So, the most recent resident, already so close to the end, I give, but I guard. Eventually you have to or else you’re no good to anyone. AND still, I could not leave for the day without sitting by her side for a few moments just to let her know that she wasn’t alone. It’s a fine line, mostly blurred, and I’ve never been good with the middle. It’s usually all or nothing, but I’m learning…….god help me, I’m learning.

"Next Month"

He’s diminishing fast, every time I see him I’m shocked at how frail and sick he looks. Sometimes when we’re on the patio, just him and I talking and smoking a cigarette, he’ll mention a date he’s looking forward to in the future.

“Next month is……..”

I hold my breath and look behind his eyes. Look through him so I don’t have to see the question mark in his gaze.

It would surprise me if he made it through the next two weeks.

He looks ahead, toward the future, refuses to accept his fate. I wish I could tell him, I wish I could say the words, but I just nod my head as he makes plans for a day I doubt he’ll live to see.

I don’t have it in me to tell him that maybe, perhaps, he is in an AIDS hospice because he’s dying, and the future that he’s planning doesn’t exist. Tomorrow may not exist. I wish it did. I wish I could give him day after day of tomorrows. I wish I could give him a lifetime of dusk and dawn, but all I can do is nod my head and let him dream of “next month.”

Forward

I haven’t written in awhile, for those of you who follow this blog you may have noticed some changes. I am now bound by rules that are out of my control. I can no longer tell the story of the patients in the personal manner as I used to. I feel constricted and saddened that my words are now censored, even though I’m beginning to understand the reasoning behind it.

Please be patient as I try to figure out how to be true to myself and all of those infected and affected by AIDS. How to still tell the truth of this disease within the boundaries, while still being a voice for those that have no voice.

For weeks now, I have struggled with how to continue forward. Unfortunately, I haven’t been able to stop looking back. As I remove names and posts in an effort to conform my blog in order to meet proper guidelines, I feel like I’m erasing patients that are too soon forgotten already.

I have agonized over each and ever post that has had to be edited. I have spent many mornings crying softly in the shower, defeated.

The patients at the hospice tell me to never forget them, so even when I felt that maybe shutting down this blog completely would be the only way forward. I know that’s not the answer.

Easier? Maybe? But, if I write it and if you read it, it will always be.

Newport Menthol

I’m doing it again. I’m getting attached to a resident at the hospice. I should know better, but there’s something about him that pulls me in. He’s so damn young and that makes it all the more unfair. I’m the most comfortable with him, he reminds me a little of myself, if I had kept going on that road that leads nowhere.

I try for distance, to pull back a little, if only for my own sanity and wellbeing.

It’s not working.

Maybe it’s his need, his fear, or the fact that he just seems too young to be dying. I see the gauntness of his face grow more pronounced, his hands shaky, his mind slipping, and I know he’s going to break my fucking heart. Most days he already does.