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.