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!!!!

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