We're Forgetting AIDS

Never Forget

2009-03-04T21:43:00.004-06:00

I haven't forgotten the promises I made and I'm still here fighting for those who can't fight anymore.

I let my voice be silenced. I didn't realize I could be stronger, but I am. So, I guess this means?? I'm back. I've missed you out there, I've missed sharing, telling the the stories of those who lived and died but are never forgotten.

Remember, never forget....

A Different Path?!?!?!

2008-07-03T00:59:00.007-05:00

Again, it all comes back to this blog.

I’m at a fork in the road and I’m not sure which path to take. Different doors have been opening, calls out of nowhere, requests that seem way out of my league, but still I haven’t been able to walk away.

It’s about them…..the unnamed. They’re why I stay. AND because I still believe in the good that is done. I see the capacity, and I know in my heart angels fill that house.

So, this blog?

I’m not sure, I haven’t decided. The clock is ticking and soon I’ll have to choose.

In My Head

2008-06-26T08:48:00.002-05:00

“When I find myself in times of trouble Mother Mary comes to me speaking words of wisdom

Let It Be

And in my hour of darkness she is standing right in front of me speaking words of wisdom

Let It Be......

There will be an answer let it be.”

Speech at African Methodist Episcopal Convention

2008-06-18T09:19:00.002-05:00

Hello everyone, first I just want to thank you for you’re your donations, it is much appreciated and much needed. My name is Claudine and I am a volunteer at an AIDS hospice, I’m on the schedule for mornings twice a week, but I tend to be there a lot more than that, I’ve come to think of the house as a second home. Most people would find that strange since the house is a residential AIDS hospice, but despite being an AIDS hospice it is filled with love and joy. Yes Joy! Sadness and loss is a given, but the hospice is not defined by it’s losses, but rather illuminated by the dedication and quiet strength of all the staff and volunteers who give so willingly and care so deeply for all it’s residents.

Our mission is to meet the physical, emotional, and spiritual needs of those affected by HIV/AIDS through compassionate health care and social services. We turn no one away. Again, we turn NO ONE AWAY, regardless of race, religion, or sexual preference, we fight! We fight everyday for those who are unable to fight; we are a voice for all the voices that have been silenced by this disease. Sadly, despite strong efforts, HIV/AIDS has taken a stronghold on the South and refuses to let go. In 2005 AIDS was the 4th leading cause of death for black men and the third leading cause for black women ages 25-44.

I don’t want to stand here a quote statistics to you, I’m sure we all know what the new face of AIDS looks like, but do we know who is leading the fight against this disease that is decimating our community. Who is giving their time and reaching out to the community, not only about prevention but after. After infection, who’s taking care of the sick and dying.

My grandfather was a minister and a missionary in Haiti. When AIDS first came to the already battered island where I was born, he was one of the first to go and help the sick, the infected men, women, and children.

He had a church, a congregation both in Haiti and Los Angeles, I didn’t understand why he subjected himself and his family to watch as so many died in unimaginable misery, but he always believed and said,

“The church always leads the way.”

He could not ask of his congregation what he was not willing to do, so he led by example and slowly others followed. The church always leads the way…..

I give my heart and dedication to the residents at the hospice, I bathe them, I feed them, I fix their beds, do their laundry, hold their hands, laugh and cry with them, but that is my choice. Not all the volunteers are as involved as I am, some come and clean, some help maintain the gardens, and others come and prepare meals. But it saddens me as the house is mainly filled with black residents that there are so few black volunteers or outreach groups that offer their time, whether it is cooking a meal once a month, or sending in a group to help clean and make beds, so the residents know they’re not forgotten.

Our children are dying, they’re babies, they’re so young and it breaks my heart, I can’t even begin to explain how hard it is to watch them die when their life is barely lived. By the time they come to the hospice it’s already too late, but don’t we owe it to them and to ourselves, to at least let our presence be felt, seen, and heard.

Mother Theresa once said that AIDS victims are God in a hideous disguise and if you look into their eyes you’ll see Jesus. I’ve looked into their eyes and I understand. Jesus was a champion of the poor, the sick, the unwanted, the oppressed, the abandoned and forgotten. Does that not describe many people living with HIV/AIDS today? They are at the hospice because they have no where else to go and the hospice cannot survive without the help of the community.

And Jesus said, “Whenever you did one of these things to someone overlooked or ignored, that was me- you did it to me.”

Again, thank you for remembering us today and thank you for your time.

"Little Thoughts"

2008-06-11T22:14:00.005-05:00

I wonder, is it normal, to talk yourself into a good day?

“Today is going to be a good day, today I will be happy, I will smile and laugh and be okay.”

And then at the end of the day, which sometimes surprises you by being an amazingly beautiful day, to still feel a little sad as you lie in the dark, longing for sleep to come.

I consoled a friend this week who also volunteers at the hospice as she mourned a resident who touched her, who got closer than most.

“How can he be here one minute and gone the next?” She agonizingly cried.

I don’t really understand what we’re doing some days, but I know we’re needed. I know even in her grief, she wouldn’t take back one single moment.

No matter what the cost.

Starburst and Skittles Forever

2008-06-05T20:46:00.003-05:00

I stopped writing the night they both died.

I haven’t even looked at my blog until today. I got lost in it all and had a hard time finding my way back. They were both part of the “old timer crew” both had been there before the new year, watched winter turn to spring, spring to summer, and then died within hours of each other.

One was expected. He had been hanging on for awhile and I had time to say goodbye and make peace with the knowledge he was leaving.

But, him? I wasn’t ready for his departure. He was too young, it seemed impossibly wrong, an ocean of injustice crashing unnoticed except to the few of us who swim against the tide.

“Starburst and Skittles”

There isn’t a day gone by you don’t pop into my head.

I promised him he wouldn’t be alone. I sat hour after hour after hour watching his futile fight for every breath, sounding like he was drowning in a small pool of water. That sound comes back to haunt me often, I didn’t understand how one night would be like an eternity forever etched into the fabric of who I was and who I am.

“Everything he has endured, all he has not lived, aches in me.”

Today, another “old timer” needed a t-shirt, so I looked in the supply room and pulled one out. I glanced at the collar and saw his initials from the t-shirt I had given him months before, it was bittersweet. The continuous pattern of the hospice gives me comfort, but sometimes it’s hard to mourn when the next day a new resident enters and erases the space that belonged to someone else for so long.

I can’t even write his name on this blog, I mourn him, but I don’t know what’s normal, or what’s “borderline losing it.”

I’m wearing the t-shirt that I gave him with his initials (I kept it) while writing for the first time since his death. I guess that’s something……

There Will Be An Answer

2008-05-21T23:11:00.004-05:00

Within 24 hours I learned of two deaths. One from the hospice and the other someone I knew from the outside world.

Hearing about a resident’s death always saddens me, but I know it’s coming. I expect it, it is inevitable. The sudden death of a person you know has a shock value that is new and confusing.

I’m so used to death I think I’m above it, like it can’t touch me, but it can and it does. My reactions may be different from what is considered normal, but I am not immune to the absoluteness of how sudden it can be. Even when you know it’s coming.

Anyway, it’s been a long day, and I fear I may be rambling and making very little sense. So, I will stop with an inscription from Sophia De Mello Breyner.

“When I die I will return to seek
The moments I did not live by the sea”

Goodbye to you both…

"It's Like Rain On My Wedding Day"

2008-05-20T20:06:00.003-05:00

The other night I was restless, couldn’t sleep. That’s been the theme of the last couple of months. I’m either up all night, or I have crazy dreams and I wake up screaming and sweat drenched. The insomnia I can deal with as I’ve never been too keen on sleep, I've been an insomniac for as long as i can remember, but the nightmares, they seriously mess with my head.

So, I decided I’d watch a movie to pass the time, something easy, but not too cheesy. After about 30 min. browsing through video on demand I finally opted on “El Cantante.”

I had no idea!!

And I kept thinking “why had no one warned me?”

Later, I thought back to a precious moment on the patio at the hospice when Bizzle and our star resident kept singing the Alanis Morissette song Ironic. “Isn’t it Ironic?”

A little too ironic…..

Continued

2008-05-19T22:08:00.004-05:00

It’s happening, everything I knew and feared, like pulling a string and watching it unravel. It doesn’t stop once its starts. It just keeps on unraveling until the seam is hanging open and empty holes mark where that one flimsy piece of string held it all together.

It started as a visit to the hospice, not a work day, just a visit to say “hello.” Within 20 minutes of my arrival I was helping prepare his body for them to take him away, he had died and it was sad, but it’s always sad.

The next day I stayed away.

The next day I went back, it was a special day for my man-child that I hold so close to my heart. (Newport Menthol anyone?) He was fine when I saw him last, he was supposed to be “my little miracle.” I had hope, until I walked into his room and saw what my heart didn’t want to believe, but what I knew to be true. He had declined. Tremendously.

He didn’t even know who I was; he didn’t even know the significance of that day. I stayed all day, and hoped and watched, then cried all the way home and most of the night.

The next day, I wanted so much to go back, but I needed a break, so insteadI called and checked on his condition.

The next day, I went back. He was worse, hell everyone was worse, everyone IS worse. Through his confusion, he asked if he was dying…..I got the nurse in charge. She answered his questions and I could see what it cost her. The sadness, the heaviness of all that weight, sometimes it buries you.

I wanted more time, totally selfish of me. It goes against why we’re there…..to help them leave with dignity and grace, but I didn’t care. I have a soft spot in my heart for him, and it seemed unimaginable that he could have declined so rapidly, in such a short space of time. I needed more, more talks, more jokes, more time.

AND, If you think the day couldn’t get worse, you are so wrong. We lost another resident, one who we all knew and loved. He was the first resident I met during my volunteer training, and he was something special. His passing hurt like hell, I felt battered and bruised in places that take a long time to heal.

I stayed at the hospice almost 10 hours that day.

The next day, I didn’t get out of bed until that afternoon. I was up late hanging and talking with other volunteers and friends at my favorite dive bar. I only left the house because I needed to see there was still a normal world out there that isn’t darkened by loss.

The next day, I went back…..All day, again, and watched it all unravel some more.

To Be Continued

2008-05-12T22:37:00.003-05:00

I want to tell you, but I’m not sure how. Last week was one of the roughest I’ve had in awhile and I’m not ready to share. I can’t glide over it with a filler like it never happened.

So, until I can write it, I can’t move past it.

I just wanted those who read to know that I’m still here, I haven’t forgotten and when I can, I will….

Thanks

Waiting

2008-05-04T18:55:00.001-05:00

Often, I wonder, how the residents feel as they sign the paperwork stating they understand that their final days will be spent at the hospice. No life saving measures will be taken to prolong their life. Only to try to make their last days as comfortable as possible.

I wonder if they understand the implications of what “hospice” truly means.

The really sick residents, I think, may feel some peace in knowing they have a place that will care for them with compassion until their final breath. But, others, who are more independent and able to move around, shower, talk on the phone, eat, smoke cigarettes….. They have a harder time letting go, they hold on to hope that maybe they’ll get better.

That rarely happens.

It must be hard living in a house where people are always dying, wondering if you’re next. Relieved that it wasn’t you, while silently grieving for the one who died and remembering the moments you shared.

The hospice is a small facility, at some point, no matter how hard you try to keep to yourself; eventually you will get to know the other residents. You will watch them get sicker, until one day they are covered, head to toe, and taken away.

I’m sure that has to weigh heavy on the hearts of all the residents as they contemplate their own mortality.

At the end of the day, I get to go home. I get a brief respite from sickness and death, but the residents live it 24/7, there is no escaping the looming, unanswerable question.

Am I next?

Again, Newport Menthol

2008-04-27T16:48:00.002-05:00

He asked if I was drifting away from him, he felt like I had been distant lately. I assured him he was mistaken, our relationship had not changed. I was there for him, just like I had always been.

Relationships at the hospice are all different, some residents grab you from the start, sometime with a specific reason, and sometime just because. I’m not sure why we connected so quickly and deeply, but from the beginning he held a vast space in my heart that simultaneously worries and consoles me.

Worry, because I know the outcome of this relationship. Console, because in spite of it all, I’m glad that it’s him. His likes, dislikes, moods, manipulations, laughter, and sorrow. I know him, I see him.

I’m not drifting, I’m not running, I’m standing still……What he can’t see yet, is that it’s him leaving me. He’s drifting, and it’s his distance he feels, not mine.

It’s okay, I’ll take the blame. He’s not quite sure what lies ahead and I’m silently, hopefully, optimistic. He has come so far from where he started.

Maybe, possibly, he will be my little miracle

Which Way is West?

2008-04-15T22:42:00.008-05:00

So.
How did it get to this point?

When did my closest friends become distant acquaintances with nondescript conversations, highlighted by pregnant gaps in conversations that used to flow so effortlessly? When did I lose them? And why am I just realizing that almost every relationship in my life is stretched past breaking point.

All relationships from the hospice, that is, everyone inside: residents, staff, volunteers, get it. No words necessary, but outside, that's a different story.

At first, I talked to them, I told them my experiences, I tried….but at some point, you realize, no one really wants to hear. They can’t truly understand and so you just stop. You say very little, and when asked, you just shrug your shoulders and talk around it.

BUT, you live it. It’s your life. It becomes so much more than you ever thought it would, living in a parallel world where sickness, death, and sorrow rule. But, also, redemption and generosity and true goodness illuminate the dark corners. You get to see the worst, but sometimes you catch a glimpse of what angels must look like before they get their wings.

AND, you have no one on the outside to share that with. No one to call when the resident that you just wrote about….You know the one? From a couple of weeks ago, who made you pause at how destroyed his body was. When you weren’t quite sure if you could handle it, but sucked it up, did what you needed to do, and found yourself sitting with him, at the end, holding his hand as he cried.

He’s dead, and no one from the outside even knew his existence.

I don’t know how to be with my friends who knew me before, I’m never quite sure what to say, My life is so different, my experiences are damn near impossible to understand, so I just stop calling. I stop talking; I disappear for weeks because I don’t know how to navigate my world with theirs.

They say I’m distant, I kind of think they leave me no choice.

Don't Know

2008-04-08T22:53:00.003-05:00

AND this is how the light gets in.

Love, laughter, hope, forgiveness, self-forgiveness, love for the person you’d rather cross the street than walk by.

Stillness, stillness, stillness, silence from the knowledge that your actions have made words unnecessary.

Faith of purpose.

Unseen acts of kindness that pause time for you and them.

And tears, and tears, and tears.

AND this is how the light goes out.

Hatred, self-hatred, self righteousness, hopeless frozen in helplessness. Anger with no place to put it.

Lost with a map showing you the way, alone in your heart, split open and unseen

Self disgust

Gagging on words you’d rather swallow than say, until they lay siege. Spread their seeds, take root in the emptiness of your hungry belly, because you forgot how to nourish, how to breathe, how to live without fear.

Fear – that’s how the light goes out. Always, every time, everything, comes back to Fear.

Goodbye, Hello

2008-04-01T17:47:00.001-05:00

A new patient at the hospice usually means another patient has died.

I walked over to his room and introduced myself as I’ve done countless times with numerous patients. He was sicker then most of the other residents in the hospice. Their decline has been slower, filled with ups and downs. I think his days of ups are far behind him and he is on a rapid downhill decline.

It has been awhile since I’ve taken care of a resident that destroyed. The white sheets peppered with his dead skin, stained by sores that covered his body. Every movement slow and controlled, yet still caused him pain that he absorbed with strength and grace, more concerned about our discomfort than his own. “Our discomfort” meaning our worry about causing him undue pain, but still doing what was necessary to care for him.

For the first time, since I began volunteering, I felt maybe? I was in over my head. It’s one thing to care for a declining resident that you know, have bonded with. It’s completely different walking into a room which recently belonged to someone else and beginning anew.

I left the room for a moment, wanting to ask someone more seasoned to assist with his care, but I knew if I backed away now, the next time would be harder. I’ve seen worse, it’s just been awhile, and I needed to remember that I could still do what was needed, anytime, without hesitation.

And I did.

So, goodbye my old friend who lived and died in the same room and was once new to me, just as he is. Revolving, changing, and yet the same.

Checkmate

2008-03-25T19:22:00.004-05:00

I was helping him shower and his gratitude moved me, or would have moved me if I didn’t block out the thankfulness in his eyes and the humble way he appreciated every spray of water that I maneuvered around his body. I washed his feet, between his toes, scrubbed his back, arms, legs, and then finally, his hair. I massaged the shampoo into his scalp while his words of thanks echoed, then bounced far away from me.

I didn’t want to be drawn in. I didn’t want to add yet another to the group of residents that have invaded my heart and are still clinging by incredible sheer will to life.

I struggle always, ALWAYS with boundaries. When to pull back, how to give compassionate care without losing myself in their pain, without losing myself…..

I’ve watched him from afar, he was almost independent and needed little patient care. That has now changed and he can no longer do anything without assistance.

I realize now that my attempts have been useless. He had me from that very first shower, the portrait of a man who had been forgotten, the hunger for human kindness, when just a simple act of washing his hair reverberated gratitude that didn’t bounce off me as I thought or wished, but stayed. Hibernating in the spaces of my heart that I thought were already filled, but that’s the thing about the heart, there’s always room for one more.

Faith

2008-03-20T18:34:00.002-05:00

When my best friend’s husband found out I would be volunteering at an AIDS hospice, he asked if I was a religious person. He said something like “usually people who work in that capacity have strong religious faith to see them through the dark times.”

I’m beginning to understand where he was coming from.

At the end of the day, you need something more than friends, family to help carry the burden. Somewhere bigger to empty your soul so it’s not stained by the weight of your sadness, blackened by the unfairness of lives taken before they’ve been fully lived. You need to believe that there’s a reason; that it’s not all in vain. You need to believe in something, or else you begin to lose hope.

I’m still searching. But, at least now I’m searching.

Typical Day (edited and re-posted)

2008-03-16T22:55:00.001-05:00

(Written in the last months of 2007 and edited to conform to proper rules and guidelines)

A day in the life of a volunteer varies from volunteer to volunteer. We each have different reasons for being there that drives us in our work. Some volunteers are there for personal reasons, they’ve lost someone they loved to AIDS, and choose the hospice as their alter. Some are affiliated with different organizations or churches. Bizzle is a JVC (Jesuit Volunteer Corp) and we have nursing students that are always running around. I don’t know everyone’s story, but I do know that everyone is there for a reason. Some deeply personal and others purely professional, but we’re all there for a reason.

The last shift I worked was Thursday. I picked up Bizzle on my way in and we made our usual stop at Starbucks, soy ice coffee for her, regular coffee and a bagel for me. We sped down the street with the windows down and the sunroof open singing along to The Beatles - Let It Be. It was one of those rare perfect weather days, sunny and breezy with no humidity that only happens before and after winter.

Every shift starts with a brief meeting that goes over every patient, what they need, and what needs to get done. When we walked in on Thursday, we didn’t need a meeting to tell us that it was going to be a crazy day.

The house changes with the patients, new patients always move the house in different directions. Sometimes you have easy going, independent patients that allow you to do what’s necessary with ease, AND sometimes you don’t. Sometimes you have patients that require a lot more effort. I don’t mean effort in a patient care way. I mean effort in a bite my tongue and count to 10 way.

So back to Thursday.
We walk in and it’s immediate Miss. Her diaper needs changing and she needs to get out of her pajamas and into day clothes. She's a hard one, but I like her. Actually, I like her a lot. She requires an extreme amount of patience; she’s feisty and often forgets what she’s doing and who you are. She’s always telling me stuff that we did together (in her head), and asking me to go to on some random trip with her. I’ve noticed that type of mental deterioration in many advanced AIDS patients with brain infections. HIV drugs control infections in the body, but they don’t cross the blood brain barrier.

Miss doesn’t feel like playing nice today so getting her cleaned up is a task. She doesn’t want to change out of her pajamas that are stained from breakfast and she insists on trying to get up and walk by herself. She’s able to stand up on her own, but she knows she can’t walk around. Finally after exerting herself into a sweat, she gives. She lets me get her dressed after I tempt her with lotion on her legs, arms, and back. Lotion does the trick every time. Most patients crave the feeling of being touched by another person. They’re bodies are so ravaged by AIDS that it has been awhile since anyone has touched them.

After I get Miss lotioned up, wig combed and on just right, I put on her underwear with butt pads over her diaper. She hates how skinny she’s gotten and wants her butt to look bigger. She told me that she used to have a “great ass” but the wasting took it from her. Ahhhh those heartbreaking moments of clarity, they dig a little out of you each and every time. Finally ready, I get her in a wheelchair and take her to the living room to watch TV so I can get her room cleaned. Bizzle and I worked on it together. We both work fast, patient’s room done, clean sheets, swept, mopped, surfaces sanitized in no time.

While we were cleaning the room the food bank drops off a truckload of food. No exaggeration, a huge truckload of food. The kitchen had boxes stacked everywhere and all of it needed to be put away.

AND the phone was ringing nonstop.
AND the doorbell kept ringing.
AND the pipe in the nurse’s station busted leaking water everywhere.

Yeah, Thursday was hectic but everything got done. The phone and doorbell got answered. The busted pipe got fixed. The patients were showered, dressed, breakfast and lunch got made (not by me) and all the patients ate. The food from the food bank got put away (somehow??) and I was still able to spend time with the patients, outside of showering and dressing.

I spent time with a patient that I've grown close to and got him out of bed. He’s really particular about his looks. He hates going to the living room looking less then perfect, so if I don’t take the time to get him ready he’ll just stay in bed all day. I’ve seen pictures of him before the lesion scarred his face and body. He was a handsome boy, it’s hard for him to look the way he does now, and he’s not the easiest patient attitude wise. BUT I’ve developed a soft spot for him. I make it a point to spend time with him, plus he’s in the room of a recently departed resident that really touched me. How can I not try harder? His life and death taught me so much about humility and grace.

So Thursday, it was finally over and I was sitting on the patio with the nurse/ team leader who managed to stay calm when Bizzle and I decided that we were going to do a bed transfer on a patient that we had NO business even trying……. to the rescue the nurse came, although he snapped at us a little, but we totally deserved it. Talk about biting off more than you can chew?? We were talking about the craziness of the day and how we managed to pull it off.

It doesn’t really matter why we volunteer, the point is we’re all needed. All of us make a difference. Like the volunteer who was just stopping in to drop something off but got stuck cleaning up the mess from the busted pipe.

Thurday. Thursday. Thursday. I didn’t even get to eat my bagel from Starbucks.

Lessons (edited and re-posted)

2008-03-16T21:15:00.007-05:00

(Written when I first began volunteering, edited to meet proper rules and guidelines)

He came to the hospice as a 30 day respite patient, he was addicted to crack and had AIDS. During his first couple days at the hospice he was very weak, couldn’t get out of bed without assistance and needed a wheelchair to get anywhere. Gradually, he regained some of his strength and was able to shower standing up with assistance and walk with the aid of a walker. He started to leave his bed and watch TV in the main living room and eat his meals at the table. I remember one day at the end of my shift, he was walking around the house by himself. He slipped on his sunglasses and walked outside. He still had a couple of weeks before his 30 days were up, but he was doing a hell of a lot better then when he was first brought in.

He wasn’t my favorite patient. His eyes were unreadable and he was distant, cold. There was something remote about him, something that at times made me nervous. Taking care of him didn’t come as easy as it usually did with the other patients. I was polite, as he always was, but I felt uncomfortable showering him alone and getting him dressed. So, when I heard that he had left the hospice before his 30 days (and right after he got his check) I didn’t give it much thought. Until he came back, the day that Ms. began actively dying, when I sat in her room praying and hoping that she would hold on until her family got there, and he showed up at the door. Days after he left with his check.

He came in assisted by his partner. He looked worse than he did the first time he came to the house. So began the process of admitting him yet again. This time as a hospice patient, meaning he couldn’t leave the house again until his death. That was a crazy day, with Ms. barely breathing and her family in and out. Helping them with their grief, I felt a little resentment towards him. He was taking my time away from Ms. I felt like we worked so hard to get him better and as soon as he was able he left. No thank you, no goodbye. It was all about the pipe.

That resentment carried over to the following week when I had to help bathe him since he could no longer stand by himself. He was so much thinner, his body was a mess with sores and scrapes and he was back to being bed bound. My patience was very much tested with him. I treated him with kindness and consideration because regardless he was in pain and he was closer to death then before. My thoughts were my own and he would never know them. All that mattered was making him as comfortable as possible. I brought him ice cream with a smile, but my heart was hardened.

The next week, as I drove over to the hospice, I decided that I had to try harder. He was sick, not only from AIDS, but also from his addiction. I had no right to judge him, his mistakes, or his weakness. I began my shift by sitting with him. He wasn’t doing well and his family and partner had been called. I sat in the chair by his bed and held his hand. I read to him an article from the paper, an excerpt from Joel Osteen’s book on learning to live in peace with ourselves. As I got to the final paragraph on not condemning ourselves for our past mistakes and letting go, He took one long breath and then stopped.

He died. With me sitting beside him. Reading him an article on self forgiveness.

I kept busy the rest of the day. The steady rhythm of cleaning, changing bed linen and taking care of the other patients kept me from getting too much inside my head. When I got into my car to drive home everything settled. I bypassed the freeway and took the long way home, both hands on the steering wheel, almost comatose. I pulled into my garage, peeled off my clothes and threw them in the washer. I climbed the stairs and got into a scalding hot shower. I tried to lie down and rest, but thoughts of him kept buzzing in my head, I knew that my peace would not come until I wrote it down and let it go.

So, to you Sir I say.

Your life and death taught me two lessons. Never judge, and at the end everyone needs someone to hold their hand. No one wants to die alone. Thank you for letting me be that person.

May you rest in peace……and may I have dreamless sleep.
.

Linger

2008-03-11T21:38:00.001-05:00

So, things at the hospice?

Pretty much the same. The residents have remained, they decline, bounce back, decline further, rally for a day or two, and then decline again. It’s a constant merry go round, baited breath, what’s gonna happen next. But they’re all hanging on, clinging to every minute, every second, some better then others.

It’s been a long couple of months and I’m a little worn out. I think, maybe, a lot worn out. It’s hard to comprehend, this slow, long, death.

I keep waiting for the inevitable, and it’s the waiting rather than the inevitable that is invading and bleeding into other aspects of my life. I worry when I leave, that this may be the last goodbye, and part of me wants it to be.

How much suffering before it is enough? How much can a person endure when the ending is already written? I used to believe in miracles, and you know what?

I still do!

So fight, rally, cling. Sunrise and sunset awaits to console you when all else is hidden and lost in the clouds of confusion. Unfinished.

Unravel

2008-03-04T22:00:00.003-06:00

Today, before I left the hospice, I went to his room, I held his hand and I said my grandmother’s prayer, Psalm 23.

Then I went to his room, held his hand, and said my grandmother’s prayer, Psalm 23.

Then, finally, I went to his room, held his hand, and said my grandmother’s prayer, Psalm 23.

My way of saying goodbye.

All three of them, soon leaving, it was not the best of days.

Never forget.

Starburst and Skittles

2008-03-03T09:27:00.002-06:00

“It’ll be a nasty trick I played on you” said the Little Prince at the end of the book before he leaves to return to his own small planet.

I feel this way about some of the residents at the hospice, especially the ones that have been there awhile. It is a nasty trick they’ve played on me, unwittingly allowing me to get close, to be tamed, and then leaving.

I read from The Little Prince last week to a resident who has begun his slow descent. I used to tease and joke with him and now I wait, holding my breath, waiting for that phone call saying "he is no more."

It is a hard thing to watch. Every time I walked into his room and saw him lying in his bed that engulfed his small too skinny body, all that he has endured, all that he has not lived, ached in me.

Young, (too young to be dying so harshly) alone, and scared, it’s the unasked question that hovers in his eyes that makes me wince. “Is this it?” Wanting to know if this is the end, but too sick to ask….Or maybe too scared of the answer.

All I could do was sit on his bed and gently caress his face, neck, arm, and then hold his hand, returning his squeeze of my hand by holding on tighter.

It is a nasty trick…..

The Truth About Why

2008-02-27T23:18:00.006-06:00

She was afflicted, born with cursed blood.

Sultry summers, pomegranate juice dripping from our chins, staining our shirts, littering the curb, as we sat and spat out the sucked from seeds.

Sticky fingers intertwined, we planed or futures, always together. I breathed her breath, our absence of space. Face to face, forehead to forehead.

My soul’s twin.

Tainted blood, but not doomed. She could live, but she let go. Now she’s gone somewhere far from me. I cannot follow, I’ve already tried.

Some have no choice, their blood chooses for them. This was not her affliction; she could live while others will ultimately die.

Yet
she
chooses
death
each
day
with
every
pill
she
takes.

Tonight

2008-02-25T21:27:00.002-06:00

Tomorrow morning I go to the hospice and tonight I feel a little bit on edge thinking about it, last week it seemed that all the residents were declining, all of them, all at once.

I’ve said before the dynamics of the hospice have never been like they are now since I began volunteering. Most of the residents have been there for months. They’ve been able to walk unassisted, eat at the table, tell me their stories, laugh at my jokes. But now that’s changing and thinking about what I will face tomorrow after not being there since Thursday makes me nervous, a little fearful, and ties my stomach in knots.

It can’t happen all at once, it just can’t. And yet, somehow it is.

Frustration

2008-02-19T16:55:00.012-06:00

Why do I volunteer? Why an AIDS Hospice?

This question has been asked of me numerous times and I have never been able to fully form an answer. I’ve always been active in various other organizations, I’ve always given my time and heart to those who need it, but volunteering at an AIDS hospice is at the extreme end of the spectrum. Maybe my need took root as a child watching my mother take in strays, people who had no one and nowhere else to go. Or, maybe it was watching my father give his time and passion so willingly to other volunteer projects. Maybe it was my missionary grandparents who devoted their life to Haiti, or maybe it was Haiti itself. The lonely, brutalized island of my birth that always bends, but is never broken.

I was having a conversation with an acquaintance about my blog and volunteer work and he asked if I was HIV-positive. I had never been asked that question before in that context and I paused for a moment before answering. I didn’t like the context of the question, nor its implications. As if that would be the only explanation as to why I volunteer, why I write this blog, absolve him of his guilt at doing nothing and allow him to creep back into the shadows of chosen ignorance.

There are many of us who volunteer who are not HIV-positive. There are many that volunteer because they are HIV-positive, and there are many who volunteer because they lost someone close to the disease, and there are many who volunteer for their own personal reasons.

The conversation stayed with me the rest of the day, that night, and still now, as I write about it. I know it was asked as a way to connect the dots. “Why do you volunteer, why an AIDS hospice?” BUT still, the question and the subtle implications behind it bother me.

HIV/AIDS affects everyone, EVERYONE! Unless you are living on some deserted island in the middle of nowhere I guarantee you have been affected. You may not be intuitive enough to grasp how, or you may be blissfully ignorant in thinking that it has no bearing on your life, but it does and it always will until…..

So, the answer as to why I volunteer at an AIDS hospice?

At the end of the day does it really matter? If I don’t have a clear cut reason, if it’s a combination of the staggering statistics and the forgotten promises made to all who have died and are still dying, is that not enough? If all I know is that I can’t not be active in one of the greatest, almost forgotten, struggles in my lifetime, am I lacking in intent?

Today, at the hospice, the man-child I have grown so close to could barely lift his head off his pillow and I was there to hold his hand as he cried knowing the days ahead of him would be few. I was there, I was there, I was there.

Where were you?

The Patio Revisited

2008-02-13T08:40:00.002-06:00

He once told me that he didn’t understand why everyone was so frightened of death.

“Obviously it can’t be that bad because no one ever comes back. It must be better than this life we’re living.”

He was the first resident I wrote about, first in my journal and then on this blog. I’ve always wanted to revisit him, write more, but it’s hard for me to think of him in that way, dying of AIDS. Whenever I see him, he tells me jokes and bums cigarettes from me. A couple of weeks ago, he told me that he loved me. I think he meant it too.

I love the fact that he will never do anything you ask him to do until a couple of hours later, his way of claiming his independence. Even during meal times, He is always the last one to eat. You always have to set aside a plate for him and re-heat it when he’s ready. He’s the only one that can get away with that. We all love him and know that he’s a rare gem. He rarely complains, never about pain or his condition. If he’s feeling awful, he’ll never say it. You’ll only know because he’s spent more time in bed than usual. Most days you’ll find him on the patio smoking, and telling stories. He’s got some great stories to tell. Doesn’t matter if they’re peppered here and there with fiction, it’s his voice and intonation; it grabs you and holds on. He could have been an amazing actor, and he has a sharp sense of humor, somewhat dark, but always funny. He’s one of the few residents I’ve come across who has always been open and honest about having AIDS. Most residents still hang on to the negative view of their disease perpetuated by the ignorance of where they came from. Not him, he talks openly about having AIDS and how life brought him to this point.

He always tells me he’d rather be dead than ever get to a point where he has to wear a diaper or be bathed and dressed by someone. I know the day I have to change his diaper and bathe him will be a heartbreaking day. I can barely think about it, which is probably why I haven’t written about him since my first blog entry. He’s a huge part of my day when I go to the hospice. I treasure the time I get to spend with him, I love that he smiles and says “Hi Baby!” Along with a hug when I walk in, and whenever I leave he always ask when I’m coming back. I know that he knows the days I volunteer, I’ve heard him tell other residents my schedule, but I know he needs me to reassure him that I’ll be there. He has no one that comes to visit him, no family, no friends, mainly by his choice, but it doesn’t change the fact that he’s alone. So every week, I tell him again, when I’m coming, I reassure him that I’ll be there.

He was my very first connection, and continues to be a large part of why I volunteer and why I write.

The other day after a brutal moment with a very sick resident, I stood in the laundry room shaking and asked myself “what am I doing here?”

The next second He comes strolling down the hall looks at me, smiles, and winks……Question answered.

They Remembered Me

2008-02-11T20:12:00.000-06:00

It was my birthday recently and when I went to the hospice the residents remembered. They signed a card and bought me gifts, they remembered me. Most days they can’t even tell you what month or day it is, but they remembered my birthday and then they asked, as they always do, for me to never forget them.

As if I could?

Newport Menthol Revisited

2008-02-05T18:51:00.001-06:00

You were lying in bed when I walked in your room to say hello. Your arms stretched over your eyes as if to ward off unwanted thoughts. I hesitated in the doorway for a moment that could only be seen by me. Those long frail arms shocked me; the outline of elbow against skin hurt me.

I see you.

I know that you will be leaving me soon and there’s so much I wish I could say, but I don’t have the right. I don’t have the right to remind you of something you doggedly avoid at all cost. I can’t tell you how much I’ll miss you because you won’t admit that you’re leaving.

So, I walked over to your side and leaned over and kissed your jutted out cheekbone and smiled for you just like I knew you needed me to.

I hope I can survive you.

A Day Without Loss

2008-02-05T17:41:00.000-06:00

This morning when I pulled up to the hospice there where more cars than usual parked in front and on the side streets, I paused for a moment and then kept driving. I decided since it was still early that I would stop at the corner store to pick up a pack of cigarettes for the house and candy for the residents. I called a close friend that knew exactly what I meant when I said “The house is surrounded by cars.”

I was stalling.

Usually lots of cars parked in and around the hospice means that a resident has died or is dying and family and friends have flocked to spend their final moments, to cry, to grieve, so say goodbye.

I picked out the usual assortment of candy at the store for the usual residents and wondered if some of the candy I was buying was for a resident that was no longer with us. As I pulled up to the hospice again and parked in one of the few available spots I braced myself for whatever might come as I walked through the front door.

The loss of a resident is always difficult regardless of their length of stay. Everyone in the house is affected, the other residents, silent and scared as they face their own mortality. The staff and volunteers, sad at the loss of someone they had taken care of if only for a few moments in a day filled with many moments. Of course there are some residents that touch us in different ways. I know I have formed bonds and crossed lines that will test my strength and hopefully I’ll find a soft place to land when I come spiraling down in the aftermath of loss and loss and loss and loss and loss.

But today, as I braced myself for the worst, I walked into the hospice and saw that the names on the charts had remained the same. The influx of cars was due to visitors touring the hospice rather than loss or impending loss.

Today, I am thankful for a day without loss.

My Ignorance

2008-01-30T10:05:00.000-06:00

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

2008-01-24T22:32:00.001-06:00

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"

2008-01-16T21:29:00.000-06:00

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

2008-01-09T09:05:00.000-06:00

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

2008-01-01T17:38:00.001-06:00

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.

Better Version?

2007-12-25T18:52:00.000-06:00

I had a conversation with my brother the other day. He asked me if the work I do at the hospice bled into other aspects of my life. He was concerned that I would turn into someone completely unrecognizable from the sister he knew. He mumbled something about how I’m always the one who sees the bright side of stuff and he would hate for me to lose my quirky, upbeat personality and turn into a dark, depressed person who dwells in loss and death.

“It has to change you.” He said. “There’s no way that you can do the work you do without it taking away from who you are.”

He also reminded me that my family and friends are affected as well. Relationships change as I change and sometimes those close don’t know what to say to me, nor I to them.

He’s right. Sometimes I do feel the distance in relationships I had before I started volunteering at the hospice and some days I am dark and cynical and sad and angry. I’m not the same girl. How could I be? BUT that’s the point, I don’t want to be the same girl, I want to be better. I need to be better.

I spent part of my day bringing Christmas gifts to the patients at the hospice and their happiness made every dark day worth it.

So, some days suck, some don’t. I still laugh and play, and beautiful sunny days still make my heart smile. I still blast my car stereo while singing loudly with the windows rolled down and I still dance to my favorite cd of the moment while getting dressed in the morning. I’m still me, just a different version. A better version.....I hope.

"These Times are a Changing"

2007-12-18T18:53:00.000-06:00

I love my blog, I love writing about people that would otherwise be unknown, forgotten in the percentages and demographics of this disease.

I love volunteering at the hospice. It has changed my life in more ways than could ever be explained. It’s the subtle things that I notice the most, the quiet shifting and reconstruction of the girl I thought I knew.

What would I do if I couldn’t write it anymore? What would I do if I couldn’t volunteer anymore? Will I still be me, just stronger? OR broken and disillusioned at all that I thought was true?

Never forget, never forget. Please don’t forget them, even if I can no longer remind you.

Thanks,
Claudine

Remembering

2007-12-17T21:00:00.000-06:00

Tomorrow is my first day back at the hospice since his death. I almost want to call and find out if a new resident has taken his room, but I know it’s not about that. Sure, I mourn the loss of him, but I can’t let that loss take away what is needed from me as a volunteer. I have to be there for all the residents.

Although, I hope I’ll get a chance to sit on his bed and remember him for just a few moments before he fades away from the space that was his for months. I just want to sit alone in his room and remember when….

Never Forget

2007-12-14T19:19:00.000-06:00

He's dead.

I called this time. I called before they had a chance to call me. I wanted to check on him. I was with him earlier and I knew he was fading fast.

I rubbed his head and caressed his face. I talked to him, told him lots of stuff that’s now all jumbled in my head colliding with my emotions. BUT I know I told him I loved him. I rested my forehead against his and whispered goodbye over and over in his ear.

When I saw him last, he knew me. I held the straw to his lips as he drank water, I rubbed his head and he smiled and said it felt good. I told him I’d see him tomorrow before I left and he asked me “what time tomorrow?”

That was the last time he spoke to me, the last time he ever opened his eyes.

I want to call someone and say “he's dead,” but there’s no one to call. I feel the loss, but I’m not sure how that transcends to my life outside of the hospice. It's a juggling act that I haven't mastered yet and probably never will.

I wish I could write something that would do justice to his death, but it's all too much. Or, maybe, not enough.

Tuesday

2007-12-11T22:30:00.000-06:00

Today, I left 20 minutes early. For the first time ever, since I started volunteering, I left before my shift ended.

Nothing extraordinarily bad happened. I’ve had far worse days, but today I felt overwhelmed and just tired. I kept telling myself that I got there 30 minutes early, so it really wasn’t that big a deal, except it was. It’s a big deal to me, it makes me sad and I’m not sure WHY?

24 Hours and 13 Minutes

2007-12-05T18:54:00.000-06:00

When he came to the hospice he was lying down in the backseat of someone’s car with pillows propping up his head. I had never been at the house for an intake of a new patient. Usually, they come the night before my scheduled shift or right after I leave. I went to the car and helped gather his belongings and wheel him to his room. He had a large group of people that accompanied him, family and friends. We all crowded in his room and started the process of admitting him to what would be his final destination. He was tall. Thin but not wasting, he had that rotting, sweet, sickly, scent of a liver dying inside a body. He was responsive and able to sit and stand with assistance. During intake, we helped him to the bathroom door. He went in alone, and closed door behind him, came out when he was finished and got back in bed. I’m not sure where that strength came from, maybe he needed to reassure his family. It was the last time he went to the restroom by himself.

I signed his paperwork as a witness, helped inventory his belongings, and grabbed a hospital gown from his drawer. His family was concerned that he would be uncomfortable with me helping to undress him. “He doesn’t like women to see him naked,” they all said. The nurse on duty explained to them that he was the only male at the house today so the only option would be a woman, but if he objected that he would “go it alone.” We understand that everyone was nervous and scared; it’s hard on all those involved when someone you care for and love is facing the end of their life and everyone at the hospice is sensitive to the apprehension and fear that comes with that first day. BUT, we did explain there would be times when the only choice would be a female nurse, or volunteer. When everyone finally cleared the room, the nurse inspected his body for any open sores. He cleaned and bandaged all of them and we got him changed into his gown with no objection at all.

When I left later that afternoon, I expected to see him my next shift. He seemed strong. I thought for sure he’d be around awhile.

He died 24 hours and 13 minutes after being admitted.

November was a hard month for us, we lost 9 residents. NINE!!...I hope December gives us a break. It would be nice if all the residents that are currently at the hospice could make it to see the new year. I’d really like to buy Christmas gifts for everyone, but I don’t know who’ll be there December 25th.

I don’t know who’ll be there tomorrow morning when I walk in.

Red Ribbon

2007-12-03T18:49:00.000-06:00

Saturday, December 1st, World AIDS Day.

My day started at 6:00 am, After going over my speech a couple of times I met up with Bizzle my partner in all things having to do with the hospice, and, a volunteer coordinator who helped arrange my speaking at the Church.

The ceremony was simple, yet beautiful, with meditation and music, marked by moments of silence. Youthsound, a boys ensemble, played a peaceful, thought provoking piece right before my speech. Their music helped center me, clear my head, so I could deliver my speech with passion and clarity. Other guest speakers included Michael Tolle from Baylor Pediatric AIDS Initiative, and Adam Robinson from First Unitarian Universalist Church.

At the end of the ceremony, a woman whom I had never met, came up to me and hugged me. She clung to me and held me tight, whispering "thank you" over and over again in my ear. I don't know her name or her story, but I'll always remember that hug.

Later that day Bizzle and I went to a couple of other World AIDS Day event. We also stopped by the hospice to say hello to the residents. They’re the driving force behind everything I do, so I couldn’t picture spending World AIDS Day without seeing them.

That night we went to see a benefit performance for HIV/AIDS. It was my first time seeing the show and it was amazing. All the performances were excellent and I was proud to be there. The show ended with the performers: dancers, singers, actors, placing candles on the stage. The entire stage covered with candles that the audience, one by one, climbed onto the stage to light in remembrance of those past.

Bizzle and I made our way to the stage and each lit a candle. It was so beautiful to see, the entire stage lit up with candles by all of us remembering those we had lost to AIDS.

I kept expecting to break down. I kept waiting for the hurt in my heart to engulf me. It wasn’t until the end, when I noticed that the performers had to come back on stage to light the remaining candles, that I let myself feel what was in my heart.

All day I had noticed the lack of attendance at all the events that I went to. I kept wondering why there were so few people out in support of World AIDS Day. Why are we forgetting that AIDS is still a dominant killer? And why don’t we care anymore? These are the questions I asked myself as I thought of all the residents at the hospice who had died and all of the residents who are still dying.

Thank you to all that came out to show your support, thank you to all who remember. Special thanks to Jenn, Jeff, Sacha, Taiwo, and Soleil who woke up at the crack of dawn to come hear me speak because they love and support me. I wish that same love and support for everyone in the struggle……..

My Speech for World AIDS Day 12/01/07

2007-12-02T14:09:00.000-06:00

Hello, my name is Claudine and I am a volunteer at an AIDS hospice and despite being an AIDS Hospice it is filled with love and joy. Yes JOY!! Sadness and loss is a given, but the hospice is not defined by it’s losses, but rather illuminated by the dedication and quiet strength of all the staff and volunteers who give so willingly and care so deeply for all it’s residents.

The residents always tell us to never forget them……We should never forget. So, with the encouragement of my husband I started a blog, a space where their life and death can be remembered and memorialized.

I’ve put together a short compilation of various postings that I would like to read.

So you too will never forget.

“The Lord is my shepherd, I shall not want.” Psalm 23, my grandmother’s prayer. The prayer that was read at her funeral, whispered at her gravesite. The prayer I read to him as he lay dying. I stand by his bed watching him fight for a life that’s already gone and all I can think is “please let go, stop fighting.” He was so thin; I had never seen another human being so thin. His ribs jutted through his hospital gown. His hands, skeletal, every bone outlined. He was wasting from AIDS. It is a terrible thing to watch, but he endured it with more dignity and strength then I thought possible. His courage separated him. His warmth and kindness made him a favorite to all of us in the early days, the days when he could still talk and laugh and joke. When I would stop by his room just to hear his pleasant voice, and no matter how small the task I did for him, his gratitude always showed in his eyes.

Now I watch him clinging so hard, fighting for each breath. His death rattle echoing in the hall. I stand by his bed until my skin screams. I ALMOST run, but his terror filled eyes open and meet mine. They can barely focus, but I know he sees me and I see how scared he is. For some reason that steadies me, I know I can be there for him, I know I can help him not be so scared. I sit by his bed and hold his hand as firmly as I can without causing him pain. I want him to know that someone is beside him. I want him to know that he’s not alone.

“You don’t have to fight so hard anymore.” Let go, just let go.” I whisper in his ear before leaving. Hoping that I get a chance to see him alive again and praying that I don’t.

2 months later

The day started with Ms. but unlike last week when she was giving me a run for my money, today she was barely alive. “Actively dying” it’s called. Last week I was chasing her around her room trying to get her dressed. This week she wasn’t even able to suck water through a straw. Barely breathing, so small and frail in her bed; face drawn, eyes rolled back. It amazes me every time how rapid the decline can be.

Her family had been called and they crowded into her room, crying and writing Bible verses on paper for her, stepping outside on the patio to smoke, drinking coffee, and hoping for the best. There’s that word again “hope?” I’m not sure how to even begin to address “hope” as it pertains to the patients at the hospice. My HOPE is that they’re not so scared, that they find some kind of peace, and that they don’t die alone.

The day was ending for me, almost time to go home. I went to Ms's room before I left to say goodbye, I wasn’t sure if she would still be alive the next time I came to the house and I wanted to sit with her for a few moments. Her family had already left, all of them gone, as quickly as they had arrived. Standing outside her door I heard someone singing softly. I walked in and a volunteer was holding her hand singing from a hymn book. I sat down, closed my eyes and listened. It was the most peaceful I had felt in a long time.

Minutes later, Bizzle, another volunteer, joined us and with tears in our eyes we said our goodbyes singing long forgotten hymns to this strong, feisty, woman who had challenged us in the best of ways.

The hardest part is the residents that you don’t get a chance to know, the ones who come already at death’s door, who barely make it through the day and succumb to the “dying of the light.” The ones you take care of for that shift, and you know that you will never see again. They’re the ones who sneak up on you, the ones who haunt you. Their faces stay, long after their names start to fade from the list in your mind. The list of the people you knew and cared for at the hospice that you carry with you. I think everyone there has a list, some longer then others

Like this amazing nurse and shift leader who been at the hospice for 11 years. Who each week flies back and forth from his home to the hospice to work back to back 12 hour shifts because he believes it's worth it. According to him, the hospice is one of the best places to work because you feel your impact. Everyone there is there because they want to be, volunteers and staff. He believes the mix of volunteers add to the hospice, “makes it better.” he says, not only for the residents, but for the staff as well. The blending of so many different personalities creates a unique environment that makes the hospice stand out. He enjoys the juggling act of working with various volunteers because it also allows him to see the good in people. Not all professions allow you to see the great things that people have to offer at no benefit to themselves.

Finally I would like to leave you with one last image from my early days when I first began volunteering. A resident I cared for that I will never forget, even though I barely knew him.

I moved him on his side and held him. I washed his arms, legs, chest, skipping over the bandaged sores that checkered his body like coordinates on an unreadable map. I didn’t know him. He was a new resident and wasn’t expected to last long. He was the first man I’d ever washed, and he was a mess of scars and holes. He smelled like an infected open wound. I puked in my mouth, swallowed and kept washing. I cleaned the thick white paste from his cracked lips and beard off his swollen face. I was wet with sweat and shaking, and he never opened his eyes. His moans told me when I pressed too hard or repositioned his body too quickly. Finally, when it was all done, when he was all clean, in a new hospital gown, with fresh sheets on the bed, he opened his eyes and he looked right at me. I held his vacant gaze for a second and then looked away and bolted from the room.

The next morning he was dead. I hope he knew that a scared girl, who had never washed a grown man before, as tenderly as she could, cleaned every part of him as if he was her brother, father, husband, son.

Thank You

"We're Forgetting AIDS"

2007-11-28T10:33:00.000-06:00

Okay, so today, I’m going to step outside of the hospice and write about AIDS on a broader level. With World AIDS Day approaching December 1st there are some harsh truths and facts about this epidemic that need to be heard.

At last count, there were 33 million people infected with HIV/AIDS according to the UN. Every week AIDS claims as many lives as American fatalities in Vietnam. Again, EVERY WEEK AIDS kills as many people as American deaths in Vietnam. Everyday 6,000 children will be orphaned to AIDS…..Everyday.

Kenneth Cole and amfAR have launched a new campaign themed “We’re Forgetting AIDS.” So true, and so appropriate, AIDS has taken a backseat these last years. People need to understand that even with anti-retroviral drugs the disease still kills. It’s destructive and vicious and there is no cure. The end result of AIDS is always death. The younger generation who did not see the discovery and devastation of AIDS play out on the nightly news (when they actually began to report it) don't comprehend how deadly this disease is. All they know is that “Magic is still alive.” When you’re 18 years old, you think 10, 15, 20, years is a lifetime. You don’t realize that those years are consumed with fighting the disease, leaving little room for much else.

I’ve searched the “hip” boutiques that carry pink and yellow ribbons; I have yet to find a red ribbon among them. 25 plus years and the stigma and ignorance of AIDS is once again permeating through, diminishing the accomplishments of our predecessors who fought hard for facts that we now ignore. Like they don’t pertain to us? “We’re Forgetting AIDS,” and we’re still getting AIDS. The demographics may have shifted, but AIDS still exist and it still kills. It’s one of the leading killers in society and the fourth leading killer of women in America.

World AIDS Day is December 1st; I will be speaking at an event in my community. There are many events taking place to commemorate the day and what it means to those infected and affected. Pick an event, show your support, learn something new and pass it along.

A Moment

2007-11-26T09:52:00.001-06:00

Recently, there was a new patient at the hospice. He was real sick, and we knew he could go at any time. His family was with him the day before, but had not made it to the house yet that morning.

He was sweating, his hospital gown wet, his face wet, his hair slick, so a nurse and I got a damp towel and began to wipe him down. Slowly, gently, we cleaned the sweat from his face and body, put a dry hospital gown on him, combed his hair, and put Vaseline on his dry, chapped lips. His neck and chest were burning hot, his feet were bricks of ice, and he was unresponsive, but still we talked to him. Told him what we were doing as we did it, said his name often, and we hummed, as we always do whenever a task or situation is grim.

I left to get some pillowcases to restock his room. We used the ones in his drawer to replace the sweaty ones from his bed. I was gone for maybe 30 seconds and when I came back in, he was dead. My eyes went directly to his chest; I held my breath and waited for it to rise. Sometimes, they trick you, you think it’s over, but after several long moments, you see and hear that ragged intake of air, and you know they haven’t left yet. Not true on this day. Gray-faced and completely still, he was dead.

Death is just a moment, sometimes captured, sometimes not.

Never Forget

2007-11-17T19:03:00.000-06:00

I got the call Friday at one in the morning. I heard my phone ring and knew instantly it was the hospice calling to tell me Ms. died. I held my phone in my hand and stared at the caller ID. I didn’t answer. I didn’t need to.

I’m glad I got a chance to spend time with Ms. this week, I’m glad I got a chance to say goodbye. She held on longer then expected. Like I said she was feisty, she was a fighter. She wasn’t going to leave until she was good and ready.

Don’t forget her. Don’t ever forget.

Unanswered Questions

2007-11-07T09:12:00.001-06:00

The hardest thing is the people that you don’t get a chance to know, the ones who come already at death’s door, who barely make it through the day and succumb to the “dying of the light.” The ones who you take care of for that shift, and you know that you won’t see again. They’re the ones who sneak up on you, the ones who haunt you. Their faces stay, long after their names start to fade from the list in your mind. The list of the dead people you knew and cared for that you carry with you. I think everyone who works there has that list, some longer then others.

Recently, there was a new patient that had been admitted. We were told of his condition during the shift meeting. I always think that I’m used to the dying. I mean, it’s a hospice, they’re here to die. They’re in such agony that death is their only option, their only release. I’ve sat beside patients in the past and asked for their suffering to end. I’ve asked death to come and take them.

I was in the hallway about to get another resident in the shower when I was asked me to help reposition him. It was the first time I had seen him. His family had been in the room with him all morning so I gave them their privacy.

I knew the instant I saw him he wouldn’t last long, the wasted body, the sunken eyes that rolled back, the shallow breathing that seemed such an effort. I know what death looks like now and I knew he didn’t have far to go. I helped turn his body, move his pillows, adjust his bed. I felt his skin, waxy and cold, already dead, and avoided the expectant eyes of his family. They had hope, they thought he seemed better. “Maybe this will pass.” I kept hearing from all the brothers, sisters, uncles, aunts, cousins, that descended on the house. They wanted him to live, even though he was trapped in that useless body that was already dead. They wanted him to hang on, they weren’t ready to let go yet. Thankfully he was ready. He died shortly after my shift ended.

I may have spent all of 30 minutes with him. I didn’t know him or his family and yet for some strange damn reason he haunted me all night long. It makes no sense, I don’t understand. Why him?

I found out that two other patients had died as well. Them I knew, had taken care of, sat with. They had been at the hospice longer, and yet, their deaths didn’t hover in my eyelids at night. I didn’t see them in my dreams.

Where do you put it? What do you do with all that death at the end of the day? How do you let go so you don’t become consumed by it? A social outcast unable to connect because everything seems so silly, every goddamn thing is so silly and trivial. It pisses me off to even have to entertain the stupidity of it all.

Maybe I’ll just go to the gym………..

Never Forget

2007-10-30T21:02:00.002-05:00

My patience is full. Infinite, passed on to the next, as promised.

You snapped, I snapped back. You smiled, I smiled back. You laughed, I laughed with you. I asked how you were feeling and you always told the truth. Sometimes not pretty, but always honest.

A couple of weeks ago you told me how hard it was for you to depend on other people to do the things that you used to be able to do for yourself. That conversation stayed with me. It will be with me always, and it was with me today when I learned of your death.

I picture you free, I picture you happy, laughing, and bitching about how beautiful it all is.

Scary Movies

2007-10-29T13:04:00.000-05:00

I’m not scared of scary movies anymore. This is a new phenomenon for me. I’m the person who changes the channel or covers my ears and hums when commercials previewing new scary movies come on television. I have never been able to watch scary movies without sleeping with the light on for days afterwards. BUT, lately I’ve been intrigued by all things paranormal. So, I started watching movies dealing with ghost, the undead, angels, the devil…..Then I progressed to demons, zombies, monsters and psycho killers. This past weekend (the weekend before Halloween) I overdosed on all the horror flicks that I adamantly refused to watch growing up, The Omen, Carrie, The Exorcist, and of course Halloween and its various chapters and subchapters. I watched transfixed for hours and felt no fear. When one movie finished I moved to the next one without giving it a second thought. I guess this is a good thing?

Dare I ask? “Why am I not afraid anymore?” The answer is quite obvious. I’ve seen what real fear is. As I said, the answer is obvious, if you’ve read any of my blogs you understand exactly what I mean.

And yet, the fact that I wasn’t afraid anymore made me sad. It meant something. That I was changed. I knew I was, but this proved it in a stupid, but affecting way. I called my best friend to tell her; after all she knew how I felt about scary movies since I refused to watch them with her. (She’s a horror flick fan) I was hoping she’s hear the ache in my throat as the words gurgled from my mouth, but she missed it. Lately there have been divisions of sub-divisions between us, “little boxes, little boxes.” Our worlds don’t collide anymore, they barely mingle. I guess that’s expected, but I do miss the way her mind used to read mine.

There was no one to tell, no one who’d get it. I screamed my frustration louder then those movies I’d been watching. I may not be scared of scary movies anymore, but I sure as hell scared my neighbors. Afterwards, I was hoarse, but calm. After you break, you rebuild. Sometimes stronger, but still cracked in the hidden places, the places only you know.

That night, I slept with the light OFF, unafraid.

Trash Boy

2007-10-24T21:22:00.000-05:00

I was taking the trash to the outside dumpster the first time I saw him. It was about a month ago and he was digging in the trash. He was tall, skinny, with beautiful ebony skin and white teeth. It took me a second to connect the image that was in front of me, it didn’t fit. It seemed all wrong, like he accidentally threw away his keys or something. Like there was a deeper explanation to him digging through the trash. But there wasn’t.

On closer look, his clothes were dirty, raggedy, and he had that look. The vacant eyes, the hollow cheekbones, the chapped and cracked lips.

“Don’t dig in this dumpster,” I told him. He was opening the individual trash bags from patient’s room. Not like there was anything hazardous in them, but some patients have various infections and conditions brought on by their weakened immune system that are far more infectious than AIDS. Digging through their trash…….not such a good idea.

He didn’t say anything; he just looked at me and walked away.

The very next week when I was taking out the trash I saw him again, digging through the individual patient’s trash bags that we empty daily from their rooms. What the hell was he looking for? Drugs? Like any of our patients would throw out their meds…HA! I know he wasn’t looking for food because he was only opening the small plastic bags.

“What are you doing?” I asked him. “Don’t dig through the trash. Do you know what this house is?”

“It’s where people live that have AIDS.” He answered.

I didn’t confirm or deny that the house was an AIDS hospice. I knew that information was private and not to be given to random people digging through the trash. That’s one of the reasons the house was so nondescript, it was meant to blend into the beauty of all the old homes in the neighborhood.

“Then why the hell are you digging through the trash?” I asked.

“At least the people in there have food to eat and a place to sleep.” He said.

“But they’re dying!” I yelled.

“At least they have a place to die,” he muttered as he walked away from me.

Enough said……

Braver, Better, Stronger

2007-10-22T12:23:00.000-05:00

k.
He had lesions that covered every open space of skin. I didn’t flinch, not even blink as I helped undress him. He had an accident in bed and needed to be showered immediately. His feet were swollen from edema and caused him an extreme amount of pain whenever any pressure was applied. He had to be moved slowly, cautiously. T was in charge and I was following his lead, together we got him in a sitting position and then swung his legs over the edge of the bed. Then we proceeded to slowly lift him into a standing position so he could be placed in the chair and wheeled to the shower. We were fast and efficient, T got him cleaned up in the shower while another volunteer and I stripped and sanitized the bed, mopped the floor, and remade the bed with fresh linen. By the time T returned from the shower with him, his room was almost ready. Again, I assisted T with lifting him into a standing position from the chair so he could be placed in his bed. We padded his bed in case of future accidents, and T applied a condom catheter to his penis to help flush out the water and help reduce the swelling in his feet and scrotum. I held his hand and talked to him about nothing, trying to use the sound of my voice to distract him from his discomfort, and anxiety. It was his first day at the hospice and he seemed young to me. I hadn’t had a chance to read his chart, but he seemed younger than most of the other patients and he seemed scared.

I thought we did well that day, the three of us, under T's lead, managed to get a pretty dicey situation under control, calmly and efficiently. T is good that way, he makes everything seem easy, no sweat. He never loses his cool, which transfers to us. If you can’t handle it, he doesn’t care if you leave, but if you choose to stay and help, you better not get in the way and you better be making the situation better. Some people lose their cool and that just makes it harder for the patient. If you’re not calm, why the hell would they be calm?

I drove home pleased with what I had accomplished, not just with the one, but with all the patients.

The next morning I woke up with a twinge in between my shoulder blades. A soreness that seemed familiar. I ignored it and went about my day…….
Breakfast at Le Peep with my husband and daughter (weekend ritual), shopping for winter clothes for my daughter, and a gift for my friend Jen’s baby shower that I was attending that night. The twinge grew worse as the day proceeded and my memory grew better. I had felt this before, not as bad, but it had happened before. I took a bunch of Advil and got ready for the baby shower.

At the shower, I could barely move my right arm, and I couldn’t lift anything without a sharp pain echoing through my back, starting under my left shoulder blade. Driving home, it hurt to breath and now it was just a continual spasm in the space between my shoulder blades. When I finally made it home, I laid down on the living room floor. I wanted to cry, but even that hurt too much.

I spent the whole next day in bed, medicated, drifting in and out, remembering what I did wrong. The first time I hurt my back like this was when I helped get another patient out of bed and into her chair, she had herpes and was a scratcher. She was also almost blind and liked to touch because she couldn’t see you. She was the first patient I ever helped out of bed and I was scared, I didn’t use my body to move her like they taught us. Instead of leaning in, I leaned out and only used my upper body, by arms and my shoulders to help move her. I didn’t know any better back then, but I should have known better by now. I have helped move countless patients since then.

Not as an excuse, but only as an explanation. I had never seen lessions so bad on anyone before. When moving him, I leaned out, instead of leaning in, I leaned out………..AGAIN!

So much for being Braver, Better, Stronger.

Today

2007-10-17T09:10:00.000-05:00

Today I wake up sad, my body feels battered and I’m exhausted. I know my mental state of mind is transcending to the physical, but I can’t shake off this deep heavy feeling. Sometimes I feel so surrounded by death. My thoughts always seem to drift to the patients, wondering who survived the night, tensing for that phone call whenever my phone rings.

Today is a hard day; his death is still weighing on me. Tomorrow will be better…...

Saturday Night

2007-10-13T19:07:00.000-05:00

Saturday night. Getting ready to go out, meet up with friends, enjoy myself, let the previous week melt away. My phone rings, don’t recognize the number, answer it anyway. It’s the hospice calling from an alternate line to let me know she died…..so much for letting my week melt away.

She’s been with me since my very first day at the hospice. She was the first patient I ever took care of. Mentally, she wasn’t all there, but there were moments of such clarity that made me pause at the lunacy of it all. The last time I was with her, holding her hand and singing every song I learned in Sunday school, she was clear. She knew who she was and she knew she was dying. Why does death bring clarity when life is spent tripping through the fog?

So, Saturday night?

If I stopped every time a patient died then I would forever be still.

Think Global

2007-10-10T10:04:00.000-05:00

Global.

I understand, I understand, I understand. I was born in Haiti, one of the poorest islands. I know that other countries need our help. I know that the devastation of AIDS in a “third world country” cannot compare to what slips through the cracks here in America. I know that the global quest is what drives the machine. BUT, I also know that people are dying from AIDS everyday right here in our country, down the street from us, our neighbors. People that shop for groceries in the same stores we do, that drive their cars on the same streets. What about them? When did they fade from the forefront replaced by images in countries that the average American would never see except for TV and magazines? Where are all the red ribbons among the pink, yellow, blue, green, orange……?

I understand.

I always thought that my mission would be global. I wanted to work with AIDS in Africa. I wanted to go back to Haiti, my birthplace and fix EVERYTHING!! I carry Haiti in my heart, always. I educated myself and I planned, but then my life happened. I got married, I got pregnant. How the hell was I supposed to leave my husband and daughter? I’m not a celebrity that can afford to travel around the world for months at a time using their fame to draw attention to their cause of choice. I have obligations and constraints like most people trying to carve out a life in a country that gets meaner and uglier to the ones who carry most of its burdens on their shoulders.

I made a choice. I chose my own backyard.

I work within my community, I work with people who have AIDS and are dying and have nowhere or no one to turn to. I sit with them when they’re scared, I laugh with them when the rarity of joy comes. I hold their hand as they take their final breaths. Dying from AIDS is horrible wherever you are, is it uglier in Africa? Yes! Of course! But that doesn’t mean that Ms deserved less attention as I watched her eyes roll back in her head and thought that every breath would be her last. She suffered too, her last weeks were hell, and I bet you may have had more luck running into her at some point in your life than someone halfway around the world.

Think global. Educate yourself. Understand the needs and conflicts. Help when you can. But, don’t forget the person around the corner. Don’t forget that your community is just as important. You can’t fix the world with a broken tool.

Never Forget 09/26/07

2007-10-03T18:51:00.000-05:00

“The Lord is my shepherd, I shall not want.” Psalm 23, my grandmother’s prayer that she said before every meal and at every family event. The prayer that was read at her funeral, whispered at her gravesite. This prayer I read as he lay dying. I stood by his bed watching him fight for a life that was already gone and all I could think was “please let go, stop fighting.” He was so thin, I had never seen another human being so thin. His ribs jutted through his hospital gown. His hands, skeletal, every bone outlined like some student study chart. He was wasting from AIDS. Wasting Syndrome – The involuntary loss of more than 10 percent of body weight with more than 30 days of diarrhea, weakness, or fever. It is a terrible thing to watch, but he endured it with more dignity and strength then I thought possible. His courage separated him. His warmth and kindness made him a favorite to all of us in the early days, the days when he could still talk and joke around. When I would stop by his room just to hear his pleasant voice, and no matter how small the task I did for him, his gratitude always showed in his eyes. Even when he was so weak that he could no longer make it to his bedside commode, he was always so damn grateful for any little thing we did. Through his embarrassment at dirty diapers and bed baths, that gratitude and courage clung to him.

I got attached, I didn’t meant to, but I knew I would from the first time I met him. I brought cake and ice-cream leftover from a patient’s birthday into his room. It had been a busy morning and I hadn’t had a chance to stop in and say hello. It was towards the end of my shift and I wanted to meet the new guy. It’s always hard going into a room that used to belong to someone else and starting new. I don’t think we said much to each other. I introduced myself and he thanked me for the cake and ice cream, but I remember his kind eyes. I remember wishing that I had stopped by his room earlier in my shift. From then on I made a point to always say hello to him first chance I got.

Now I watch him clinging so hard, fighting for each breath as his death rattle echoes in the hall. I stand by his bed and watch him until my skin screams. I ALMOST run, but his terror filled eyes meet mine. His eyes can barely focus, but I know he sees me and I see how scared he is of dying. For some reason that steadies me, I’m no longer in flight mode. I know I can be there for him, I know I can help him not be so scared.

I get a cool wash cloth and gently wipe his face, allowing his tongue to draw some of the dampness into his mouth before setting it on his hot forehead. I sit by his bed and hold his hand as firmly as I can without causing him pain. I want him to know that someone is beside him.

"You don’t have to fight so hard anymore, don’t be scared. Let go baby, just let go.” I whisper in his ear before leaving. Hoping that I get a chance to see him alive again and praying that I don’t.

I Didn't Know Him 09/07/07

2007-10-03T12:29:00.000-05:00

I moved him on his side and held him. I washed his arms, legs, chest, skipping over the bandaged sores that checkered his body like coordinates on an unreadable map. I didn’t know him, he was a new patient and wasn’t expected to last long. This I learned from the shift meeting in the morning for the volunteers and staff that basically outlines what’s what for the day. A brief overview of each patient, what’s been done by the previous shift, and what needs to be done.

The hospice I volunteer at is facility for people who are dying. Who have AIDS and generally have nowhere else to go. It is the best of what people can do when they care enough to make a difference. Basically it kicks ass! It’s a residential hospice that feels like a home, with a living room, full kitchen, and dining area. You would never know in a million years that this beautiful home houses the sick and dying. Not from the outside, and not from the atmosphere of the staff and volunteers who actually like being there. An eclectic group of lovable freaks who take the time to care for and know each patient, and never give in to the despair that seems to cling to most hospice care facilities. I guess I’m one of them now, and our house, even with its ups and downs, is where I want to be most days. Even when I can’t wait to leave, I’m always waiting until it’s time to come back.

I didn’t know him. He was the first grown man I’d ever washed, and he was a mess of scars and holes and he smelled like an infected open wound. I puked in my mouth, swallowed and kept washing. Cleaned his crusty forehead, wiped the thick white paste from his cracked lips and beard off his swollen face. I was wet with sweat and shaking, and he never opened his eyes. His moans told me when I pressed too hard or repositioned his body too quickly.

Finally, when it was all done. When he was all clean in a new hospital gown, he opened his eyes. I was standing at the foot of the bed making sure I hadn’t missed anything and he looked right at me. I held his vacant gaze for a second and then looked away and bolted from the room.

The next morning he was dead. I hope he knew that a scared girl, who had never washed a grown man before, as tenderly as she could, cleaned every part of him as if he was her brother, father, husband, son.

The Patio 09/06/07

2007-10-01T18:48:00.000-05:00

Today while sitting on the patio of the hospice, he told me that he didn’t understand why everyone was so frightened of death.

“Obviously it can’t be that bad, because no one ever comes back, it must be better than this life we’re living.”

All this time I thought he was already gone like most of the patients in the house. Truth is, he’s more together then all of them. More aware of his situation, he understands he’s going to die an ugly, mean death when it’s all said and done. Nothing about AIDS is dignified, nothing is elegant or pretty. There’s no soft sigh and fluttered eyes marking your last breath. It’s all nasty and evil, and ugly! It makes me puke, and cry, and scream in horror, sadness, and frustration at the suffering that the patients at the hospice all go through before their last breath is marked by the heavy hearts of the staff and volunteers.