Wednesday, October 28, 2009

5 After 9. An Ode to Lupus

REGRET is an intelligent and emotional dislike for personal past acts and behaviors. Regret is often felt when someone feels sadness, shame, embarrassment, depression or guilt after committing an action or actions that the person later wishes that he or she had not done. Regret is distinct from guilt, which is a deeply emotional form of regret — one which may be difficult to comprehend in an objective or conceptual way. In this regard, the concept of regret is subordinate to guilt in terms of its emotional intensity.
Regret can describe not only the dislike for an action that has been committed, but also, importantly, regret of inaction. Many people find themselves wishing that they had done something in a past situation.
Sunday October 26, 2008
9:08pm
Sleep is often hard to come by when you are filled with regret. Yet I lay here, motionless, labored breathing, feeling life drift away from me. I wonder what my mom had for dinner. She always made the best Sunday dinners. I should have called her back. I should have told her how much I loved her and even though she tap danced on every possible nerve, I know she meant the best for me. I should have kissed Stanley Boyd at the 8th grade school dance when he asked me to go steady. I should have had more sex. Instead, I lay here motionless, lifeless, having died 3 minutes ago......
One week earlier....
Sunday October 19th
2:35pm
Are all relationships this boring? Ryan and I have been dating for almost 2 years and I have spent the last year trying to break up with him. He's about as much fun as watching paint dry. I always find myself lying to him whenever hes around. I mean, I cant tell him the real reason why I keep the TV on during sex is so I dont fall asleep while hes on top. So I just let him think "I like to be watched by famous people while we do it". Besides, we never make it through a full rerun episode of "Living Single" before hes done and Im downstairs making a sandwich and regretting my procrastinating nature. I cant stop yawning to even finish my sandwich and I notice theres a few strange red rashes on my legs. "I gotta make an appointment to see Dr. Yens" I remind myself as I sit down on the couch. I cant figure out why Im so tired. I slept for 13 hours last night and it feels as though I barely slept for 3. Well, at least my period stopped. I thought I was going to bleed for the whole damn month!! If this is what turning 30 is all about, please, by all means, take it back! Ryan is calling to me from upstairs, asking about what Halloween costume did I decide on and I mumble something completely inaudible because I am falling asleep on the couch.
Monday, October 20th
9:12am
"You're late again Coleman!!"
This is my boss' response to my sheepish smile and apologetic look on my face. I could hear that lone from the "Friends" opening title song "You're still in bed at 10 and work began at 8". I cant believe it, I slept on the couch from 3pm yesterday to 8am this morning. I only woke up because I had to go to the bathroom. Even though I was only 12 minutes late, I had been only 12-15 minutes late all month, which is completely not like me. "You're slipping Coleman" my boss retorts as he passes me with his accusatory eye stare and condescending tone. That look used to really give me the creeps and would make me regret being late, but today I just dont care because I am SO VERY TIRED!!! I sit for a few minutes at my desk and nod off an on for about 10 minutes before I force myself to get up and walk to the bathroom to splash some water on my face. I get a good glimpse of myself in the mirror and notice my eyes look a bit cloudy and my face a little yellow. I jokingly say to myself I look a bit jaundicey, and I suck it up and get to work. I roll my tongue around in my mouth and feel a few weird bumps on the roof and on the inside of my jaw. I call my PCP right away. Dr. Yens is usually not in the office on Mondays, but I leave a message with her secretary anyway, explaining my symptoms. "Dr Yens isnt in the office on Mondays, but I will give her your message and she will call you back as soon as possible.." Her secretary sounds as if she just read that off a cue card. Note to self:I really get quite silly when Im tired, lol. I work through my lunch break to make up for being 15 minutes late and at 5pm, I head out to class.
5:32pm
What usually takes me less than 10 minutes to walk 8 blocks has now taken me 30 minutes and I just barely make it to my seat. Im out of breath and my heart is pounding so fast it hurts. Maybe Im hallucinating, but I swear I just palpitated.
My professor is giving a lecture on African Americans and their role in cinematic history. I hear him through the first 7 minutes of his lecture, but the next 83 minutes are a complete blur. Im awakened by the sounds of applause signaling the end of the lecture. Did I really just sleep through the whole thing?
8:12pm
I wake up to the sound of "Morning Side, last stop" And that cant possibly be right. Because if it is, that means I have slept passed my train stop. What is wrong with me. Could I be pregnant? I mean there is no other explanation for me sleeping so much. I have definitely gotta make an appointment with Dr Yens as soon as possible.
9:30pm
Finally I make it home and am exhausted. I make my way upstairs and strip out of my clothes and check my machine. I have 3 messages. I am awake long enough to hear the first one is a wrong number. Im asleep by the time the rest of the messages play. I dont get to hear Dr Yens' message, saying that she is concerned about my symptoms and that I need to some in and see her ASAP. I dont hear the last message from my mom. Her telling me what shes planning for Sundays dinner.
Wednesday October 22nd
11:14am
Confusion is the worse state of mind. Im lying in bed, completely confused about what day it is. Is it still Monday, no wait, I had class on Monday. Is it Tuesday, no, cant be. Mr Campbell, my next door neighbor, washes his car every Wednesday on his day off and always plays his old Temptations CD's.. So as I lay in bed, I am lulled back to sleep to the tune of "Imagination". Boy, I really love that song...
Thursday October 23rd
3:15am
My doorbell is ringing at the same time my phone is ringing. I only have enough energy to answer one of them. So I roll over and pick up the phone. Ryan is completely upset with me for having stood him up 2 days in a row and not calling or even returning a call. For a moment, I dont even know who he is. It takes me a moment to even remember where I am. On the porch, I keep a spare set of keys, hidden in one of the flower pots. I tell Ryan to dig through them and find the keys, I dont have the energy to walk down the stairs. He comes upstairs and looks me over. I have no fever, but I am freezing. Slightly shaking and I have at least 3 blankets, 2 sheets and 1 giant comforter on the bed. He thinks its the flu. I tell him Im really cold and sleepy and have been running a fever for a few days. My joints are killing me and I feel as though I have been hit by a truck. Ryan makes me a cup of tea and stays the night with me. And for the first time, I lay in bed, in his arms without turning on the TV.
8:05am
He calls my boss, saving me my job and embarrassment for not showing up or calling for 2 days in a row. For the first time in almost a year, Im glad I didnt break up with him. He also calls my mom, telling her I have been sick the past few days and as soon as I wake, he'll have me call her. I can almost hear my mothers thoughts " I hope she marries him...." Thats been her mantra for the past year. " You're thirty years old now kiddo. You better start using the baby making factor before its shut down...." Ryan presses me to make an appointment and I am way too tired to argue back. So I do. I call an make an appointment for Monday. Part of me think I should go tomorrow, hell, even today, but I am too tired to even make it to the bathroom on my own. While Ryan is downstairs making breakfast, I doze off to sleep again, but Ryan wakes me up soon after. Hes made eggs and toast and I usually wont eat toast without jam or eggs without cheese, but since I am at his mercy, I gratefully swallow every forkful he feeds me.
10:30am
After I am fed and bathed, I stand in the mirror again and look at my face. I start to see heavy circles underneath my eyes and my eyes have completely lost sparkle. My hair looks unusually dry and even my skin color looks a bit dusty. I smooth chap stick over my lips and run my hands through my hair. I try not to panic as I look at the large clump of hair in my hands. I rub some hair oil in my hands, smooth it on my hair and pull it back into a bun. I convince myself that maybe I am working too much. Going to school and working full time is a feat that is usually done by someone in their late teens, early twenties, but now that I am 30, maybe I am just over doing things. I promise myself, starting Monday, I will treat myself to a mini vacation, or even a day at the spa. But starting next week, I am going to be a lot kinder to myself.
9:17pm
Ryan left me a note stating that he had to get some things from his apartment and would be back by 11pm. He made me a sandwich and some soup and told me to eat something and call my mom. I eat the dry turkey sandwich and canned soup and contemplate calling my mom. As much as I love her, I cant stand to have her tap dancing on my nervous system tonight. After dragging myself upstairs to brush my teeth and crawl into bed, I say a prayer. I havent prayed or talked to GOD in a long while, but tonight seems like its a perfect time to have a conversation with HIM. As Im praying, I realize that Im crying. I dont know why, I dont know when I started, but I just started and couldnt stop.
Friday October 24th
10:27am
This morning feels different. I have a bit of energy and am actually starting to feel better. Man, never underestimate the power of prayer. I get up, shower and make my way downstairs for breakfast. Theres a note from Ryan, saying he had to go to the office today, but will be over later. He says for me to call him when I wake up and to make sure I eat something. I pour a glass of juice and sit at the kitchen table. What am I going to do? I know in my heart he is not "the one" so what am I going to do? Ah, I finish my juice and I realize I am in the mood for biscuits. I break out the Bisquick mix and whip up some buttermilk biscuits and for a moment am caught in nostalgia, remembering when my mom would make biscuits and gravy with Sunday dinners. I get halfway through dialing her number before deciding against it. I will need to be 100% before dealing with my mom and her marriage speech, especially when I tell her that Im breaking up with Ryan.
12:30pm
I am starting to feel light headed and dizzy. I must have over done it. I dont have the energy to walk upstairs, so I curl up on the couch and drift back to sleep. I hear the phone ringing in the background, but I just cant get up to answer it. I hear Ryans voice and at first I think he is here and has answered the phone, but then I realized its his voice on the answering machine. Hes just calling to tell me he wont make it back to my house tonight and that he will call and check up on me tomorrow. The phone rings again and its Dr Yens. She says shes worried about me and thinks should go to the ER and should not wait until Monday to see her. I can hear the worry and angst in her voice, but I think since shes a doctor, there is always worry and angst in her voice. If Im still feeling a bit out of sorts tomorrow, I'll go to the ER.
Saturday, October 25th
4:03pm
Wow, Did I really just sleep through a whole day again? I know Ryan has been here, I have a fridge full of groceries and another dry turkey sandwich on the counter. GOD bless him. My mom has called again and left her usual, "I havent heard from you young lady...." Message on the machine. I'll call her tomorrow. Ryan is just coming in the door as I am chewing on the sandwich he made me. He looks at me with concern and asks how Im feeling. I lie, again, and say that I am feeling much better. He asks how long have I been awake and I say I just woke up. He goes on and on about all the sleeping I have done and starts to ask me strange questions like, are you happy? Are you comfortable? You dont have any desire to do any bodily harm to yourself? I look at him for a moment and part of me wants to shout out, no ass clown!!! Im not happy. I have a job I hate, a boyfriend is as boring to be around as a cardboard box and I have had my period for almost 3 weeks. So no dipshit, Im not freeking happy!!!!! I choke down the dry ol' sandwich and force a weak smile,and mutter, no hun, Im fine, just been working too much. I swear, as soon as I am feeling better, Im dumping his ass, no more procrastinating. I make it upstairs to shower and almost fall getting out of it. The room starts to spin and I end up throwing up all over myself. I start to shake a little bit then all of a sudden, I start to shake a lot. Out of fear, I call down to Ryan and I sit on the floor crying. I cant stop shaking. I start to hyperventilate, but after a short while, Im fine again. Ryan puts me in the shower and cleans me up. Puts my night shirt on and puts me to bed. He stands over me and says, I think we should go to the ER. I convince him that Im fine and that theres no point to go now because its late Saturday afternoon and we will end up being there all weekend. Might as well just wait until Monday. He hesitantly agrees and stays with me till I fall asleep. I hear the phone ring in the background, but this time Ryan doesnt answer it. Its my mother again, asking if theres something wrong. I turn over and tell him that I will call her in the morning and I drift off to sleep.
Sunday October 26th, 2008
12 hours before I died
9:05am
The sun seems so bright this morning, it even starts to hurt my eyes and I instantly have a headache. Its shining through my window as if I dont have the curtain and blinds drawn. I feel a strange sense that somethings going to happen, I just cant put my finger on it. I sit at my desk and start to make a list of all the things I want to do with my life. Some call it a Bucket List. I start to write all the places I want to travel, all the languages I want to learn. And I even write down I want to fall madly in love. After I finish my Bucket List, I shower and wash my hair, ignoring the clumps of hair I feel sliding down my back. I dont have the energy to blow dry it, so I let it air dry. Its a curly puff ball and I like it that way. Reminds me of when I was a kid and my mom would struggle with the straightening comb to straighten my hair. I look over at the phone and wish I had brought the cordless to the couch before I sat down. I negotiate with my body that when I get up to go to the bathroom, I will call my mom.
8:45pm
I awake to a blue TV screen. I had put in a few movies to watch, but just realized they all ended up watching me. I roll of the couch, turn off the TV and head upstairs for bed. My legs are shaking horribly as I make my way up and I am gripping on the banister for support. I braid my hair and head to the bathroom to brush my teeth. I catch my reflection in the mirror and I really do not recognize myself. I look like a shell of my old self. Dimples barely there, no sparkle in my eyes, skin a dusty brownish gray. I really look sad and empty. And to my very surprise, Im tired!!!
8:53pm
I listen to my messages, one is from Ryan, telling me he'll be by later on tonight, after dinner with his family. He wants to take me to my doctors visit in the morning. And the other is from my mom. Very angry that I have not called her all week. I pick up the phone, dial her number and it goes straight to voicemail. It takes me a few moments to gather my words after the beep, but I manage to spit out an apology for making her worry and that I love her very, very much. And when Im better, she and I need to have a mother/daughter chat. I hang up the phone and am suddenly very, very cold. The chills start to take over my body and I start to shake all over. I huddle under all of the covers but I cant stop shaking. Suddenly I find myself wishing Ryan was here.
9:03pm
I dont realize I only have 2 more minutes to live. I mean, what can you do in 2 minutes. Sing a chorus of a song, whisper a prayer, tell someone you love them. Is that really enough time? All you can do is run through a mental flashback on your life and think of all the things you never got to do and experience in your 30 years time on this earth. This feeling, this sad sinking feeling is later clarified as regret and thats something I never thought I would feel before I died. As I lie here, eyes fluttering back and forth, pulse slowing down, heart ceasing to beat, All I can think about is my mom and how I never got to tell her I love her. I never got to tell her to back of and let me live my life. I never got to tell her that I am an adult and can make adult decisions when it comes to my life and all the men that may or may not be in it. But most of all, I never got to hear what she was making for Sunday dinner. That was our thing you know. Talk about the amazing dishes she would prepare for friends and family on Sundays after church. All the wonderful delicious things she would prepare that would help expand your waistline. I look up at the clock and it just turned 9:05pm. I reach for the phone, but I just cant move anymore. As my eyes start to close again, I think to myself, I'll call her tomorrow. After tomorrow, no more waiting to do anything. Everything will change tomorrow.
If only that were true.....
This story is dedicated to all the men and women who have succumbed to their battle with Lupus. And by the glorious grace of GOD, I was NOT one of them. I remember feeling the same way, tired and putting off my doctors appointment until my best friend forced me to go to the ER one night, which in turn saved my life. I remember sitting in the ER Friday morning and hearing the doctor say to me,"Its a good thing you came in to the ER, because you would have been dead in 24 hours. If not by Saturday, Sunday night for sure....
So I beg you, implore you,. Listen to your doctors, listen to your friends. Most of all, listen to your bodies. Lupus claims the lives of more than 70% of healthy women of color ranging in ages from 18-50 every year. Lets not be apart of that statistic.
That was my life and my lifes ordeal one year ago today. I am happy to be alive and healthy and single. I live my life for the moment, never knowing if 9:05 will come for me again. My Bucket List has become a quest for me and has kept me positive and focused. It has also helped me maintain an optimistic notion that there will be a cure for this hidden auto immune disease and that 9:05 will mean nothing more than a time of day. Life, need it, love it, LIVE IT!!!!

Tuesday, October 6, 2009

Euphoria

Today I awoke with the most delicious thoughts on my mind. As if there were a chef preparing 5 star delicacies in my dreams. The pain of the week before has finally subsided and I appreciated the sun dancing on my eyelids once again. I tucked the sad memories under my pillow and smothered them into bittersweet oblivion. No use crying over spilled milk, I thought. Instead, have a glass of juice. Orange juice, with extra pulp!!! I walk into my kitchen and notice a tiny bird on the ledge outside. I jokingly say good morning and to my surprise, the little feathery creature sings it right back to me. So, I sit and drink my juice and eat my yogurt, mixed berry of course, to the sound of high pitched chirping, as if it were a symphony from the skies. I bid farewell to my lovely little friend, and I even invite him to come back soon. My voice even has a slight song and melody to it. And my strides are almost like a waltz, a french waltz, something composed by Emile Waldteufe. And it is a very contagious tune. I pass the mail man on the street and he too seems to smile and greet me to a wondrous soundtrack between us, an unknown track playing gently in the air. I pet a dog to this tune and he wags his tail, not skipping a beat. I assume he hears it too. The breeze dances around me and through me, blowing the strands of me hair back and forth to Symphonie fantastique!!! My smile perfectly content to stay permanently fixated all over my face. How I adore moments such as these!!! I leave an open invitation for them to stay a spell......

Thursday, October 1, 2009

Beyond the Bars Part III

The Women......
Its Wednesday, September 30th and we are interviewing 5 female inmates, awaiting decision if whether or not asylum was granted to them. I am introduced to Ana. She is a 26 year old mother of 4 from the Honduras. She has been incarcerated for 5 months. It is very difficult for her to relax. I notice she fidgets her hands and constantly pulls at her hair. She doesnt make eye contact and I have difficulty hearing her. I ask her to look me in the eye, and she replies that she cannot. When I ask her why, she shrugs her shoulders and withdraws into herself. I ask her if she wants to leave, she shakes her head"No". After a few moments of silence, she said that I am her only visitor and the first person who has spoken to her as if she too were a human being. So, I ask her what would she like to talk about and she says her kids, she really misses her kids. She doesnt want to give their names or ages, but she starts to cry. She apologizes for her "very very poor English..." But I try my best to assure her that she speaks just fine. I then ask her a very tough question. How and why are you here? She finally makes eye contact with me. She says that she had met a man that had promised he could take her to the "Estados Unidos" and look after her and her children. When I asked if the man was a friend or relative, she starts to fidget with her hands again. She looks down at her hands and nods "No" he was "traficante". My heart beat slows a bit. I had watched the documentary "Which Way Home" and had read about all the horrible things that have happened to some immigrants when they put their trust in el traficante. She told me that he usually charges $4,000 to take women to the states. When I asked why so expensive, she said that women are usually slower than men and it takes twice as long. She told him she didnt have the money to pay him, so he made a deal with her. She would "work" for him, to pay off the balance and then if she wanted, once they got into the states, she could still work for him and he would bring her kids. She pauses for a second and then asks me a sad question. "You are not going to tell him I told you, right?" I explain to her that everything we say is between us and if she wants me too, I will change her name. She smiles a bit and bluntly says, "He" told me that if I ever told the police or gave any information about him, he would kill me and my family. I dont know if he has my kids. I dont know where my kids are. She cries, but this time there is a difference in her tears, they are tears of fear and anguish, not of shame. She says that she has done things, unforgivable things, to her body and she is afraid that the Virgin Mary will not hear her prayers and she will burn in hell for her sins. She then goes on for 10 minutes straight about being forced to become a drug mule and a prostitute in hopes of a fresh new start in New York City. She pauses then looks to me and says, " Have you ever been to Nueva York?" Im torn between a pretty lie and ugly truth. I say to her, "No, I havent, but I hear its really nice there." I didnt want to tell her yeah, sure many times, I even live there and I didnt have to sleep with anyone to get there. She then talks about how she was only supposed to work for him for one month before he took her to Nueva York. She was to work as a drug mule and travel with some men and "take care of them" if needed. I asked her what did she mean "take care of them" then she starts to fidget again. She says, "sex them" and then she turns a bit pale, as if shes going to throw up. When I asked her how long was she really working for him, she replies " 2 years". She says even when she got pregnant, he even made her continue working. I asked her, are you allowed any type of birth control? She looks bewildered at me and simply says "No, Im a good Catholic...." So no condoms, no birth control, no idea who is the father(s) of her two youngest children. So finally el traficante comes to her and tells her that they are to make the journey to Nueva York in 2 days.He comes to her house in the middle of the night, and they are off. She says he looked at her oldest daughter and smiled. "Pity shes not coming with us" he says, "I could get a lot of work for her..." She says she had never been on a plane before and that he had taken her to get her hair and nails done, and bought her some nice clothes and shoes. She said she was so excited that he was keeping his word. But they are not flying into Nueva York, they are flying into some place called Philadelphia. He explains to her that its easier to get to New York from there. She starts to really get nervous because the traffickers demeanor changed. He was very cold and mean, as if he were mad at her, no longer nice and sweet. His tone was harsh and authoritative, no longer smooth and complimentary. And when they arrived, they got into an old beat up blue car with 2 other men and drove for about an hour. When she asked him where they were going,the man that was in the back seat with her punched her. Hard. In the face. She says that everything went black for a moment and when she came to, he was on top of her, raping her in the backseat.The trafficker and the driver were laughing. They were making jokes like " Wow, you cant wait, prison was that bad?" She passed out again and when she woke up she was in a room which she later figured out was a basement. She had not eaten or had anything to drink since the airplane ride and she says her private parts really hurt her. She had a headache and could still taste blood in her mouth. She says she doesnt know how long she was there for, but according to her plane ticket roster and the time the house was raided, it had been almost 6 weeks. She said during that time, she was kept in this dark room and men would come down and do "things to her". From multiple rapes, to sodomy, she says she was treated worse than farm animals. She was made to go to the bathroom in a bucket and only allowed to bathe herself with a small garden hose that was attached to a sink in the basement and paper towles. She was fed maybe twice a week and was beaten constantly. She said the trafficker told her if she ever tried to escape, he would kill her and then go back to her home in the Honduras and rape her young, pretty daughter. She said there were other women there and they were forced to "make drugs in a pot" and prostitute themselves to whomever came to the basement. She said she never knew men could be such dogs. They urinated on her, defacated on her. Made her do things with other women and to themselves. She said one man even used his ring ( that had his initials) held a lighter to it, and then burned her with it. He had told her that she was now "branded" and that she was his property.
She says that every day she wanted to die. She no longer had a desire to live because she was afraid and ashamed of what had become of her. Her desire for a better life had actually led her to her demise. She said one night one of the girls had tried to escape and was caught. She says she could hear men upstairs beating her and beating her and raping her until the young girl had stopped screaming. She believes they killed her, but no one knows. Miraculously someone in the neighborhood tipped off the police that a particular house on the corner was being used as a meth lab and was raided by the police. She said she thought she was saved. When taken to the police station, she kept asking for water. It took 3 hours before someone brought her a glass of water and that officer said to her" Jesus you stink. Instead of drinking that fucking water, you should use it to wash your ass!" She said other officers laughed at this and agreed with smiling faces and accusatory eyes. She said she began to realize that they despised her and she was not being seen as a victim, but as a perpetrator. They were going to charge her with prostitution. The women that were held there did not get medical attention until the next day. She was kept in the hospital for a few days and was treated for severe anal lacerations and tearing ,bruised ribs, infected 2nd degree burn on her upper inner thighs and a urinary tract infection. She also had a yeast infection in her mouth, and was later diagnosed with Trichomoniasis and genital herpes. A social worker from the hospital came to talk with her about what happened and how she got these scars. She told her everything. When asked if she could identify the assailants and if she was wiling to testify against them, she refused. She was afraid for the life of her children back home. One of the other women who was held in the same house, agreed to testify, in exchange for asylum. Ana later learned that the woman got asylum for her and her family. She does not know her whereabouts. She said while in the hospital, INS agents came and placed her under arrest. They said it was found she was in the country illegally and is set and due to be processed for deportation. Ana breaks down in tears and says if I go back, they will kill me, I think they have already killed my family. One officer asks her why does she think that? And she says, no one has seen my family for two weeks. No one answers the phone. They're dead.
She says that her social worker has contacted Amnesty International and they are working to locate her family and are fighting her deportation. I asked her does she think the trafficker had anything to do with her daughters/familys disappearance and she starts to fidget again. She looks up with swollen eyes and said " All I know is, because of my ignorance, because I have disgraced my body, because I have sinned against The Virgin Mary, my family is paying for my sins. I am paying for my sins. I do not deserve mercy. I do not deserve forgiveness, but I pray for it anyway. And wherever my family is, I pray that they are safe. I pray that they are alive and well, even if they are in hiding. I pray they can forgive this misery I have brought to them." I reach under the bars and grab her hands and pray with her. The usual stern guard that wrapped the glass at me for shaking Joshua's hands yesterday does not move. He does not say a word. When I look up at him to see why, I realize, its because he was crying and praying too.....