Better Version?

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"

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

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

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

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

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

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

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"

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

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

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

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

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

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

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

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

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

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

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

“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

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

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.