This was written in response to a request from the CHEST Foundation for stories about the end of life. I got angry at the thought that I was somehow supposed to accept death gracefully, especially before my time. They work with patients suffering from lung diseases. They graciously accepted this entry, although I imagine they will be unable to use it. You can find them at www.chestnet.org/foundation/
Ah, yes. You want an inspirational story about dying. You want to bring solace to me, the writer, and comfort to what reader? Do you want the people who are dying to read these words and feel better about dying? Do you want the people who are healthy and strong to read these words and feel better? About what? About the fact that they are not the ones dying? Well, this is not going to be so inspirational.
Lets see. The stages of dying or disaster in general is supposed to be denial, anger, rationalization, acceptance. Its something like that. I cant remember at the moment. Denial? Been there, done that. Cant do that so well any more. Its gotten bigger than that. Anger. Im stuck there. I bet you figured that out already.
You see, Im an expert on dying. Ive been doing it for ten years now. I didnt realize it in the beginning. When someone or something dumps a load on you, you just carry it. At least you do if youre the kind of person I am. I still want to get from Point A to Point B. Im not going to let that bag full of bricks get in my way. Ill carry it. Ill push it. Ill drag it. Ill get there. But it doesnt work that way. You see, Point B keeps moving. I dont move at normal speed any more. Im dying. But Point B is moving at normal speed, and its moving away from me. But I still want to get there. So, I am ANGRY!!! Its such a tiny word. Even capitalized, bold and italicized and underlined and red. Its still so little. And the feeling is so big. Its killing me. So what difference does it make. Im dying either way.
I choke on my tears and my loss. Can you feel it? I want you to feel it. I want you to know the hurt and the bitterness. I want you to taste it for yourself. You cant keep your distance. I wont let you. If you are dying, then you understand. They want you to write stories of acceptance and solace so that they can feel better about the fact that they are living and it is you who are dying. They want to pat you on the back and tell you what a wonderful job you are doing of it.
Maybe they can feel it. Im getting pretty good about this writing thing. I can say things that will make you feel things. And I want you to feel this. I want it to stick inside of you in a place you cant put away and hide from. I want you to hurt, too! I want you to hurt, too!! Maybe I want you to feel because I want to feel, too. And all I can feel is anger,... and pain. Thats really what it is. I understand that in my head. I wish, in some ways I could feel resigned, but I cant. Thats because Im not really dying. Im being buried alive.
You see, I dont have cancer. I havent been hit by a car and damaged. My liver isnt failing. I dont have an inoperable tumor. No, then my death would be a finite thing, and it would happen. No, my death is going to take a long time, and it didnt and doesnt have to be that way, but it is. I have Multiple Sclerosis. Now, you might say, "Ah," now I understand. I know the symptoms. I can see shes suffered a loss. Now, I understand her bitterness. But you dont. The MS is the least of my problems. Yes, it has taken my body from me. Oh, and what a body! I was a ballet dancer. I was good enough to be a dance major at Florida State. I was so beautiful. I was agile and flexible, strong and graceful, and I loved what I could do. I rejoiced in running up a flight of stairs. Why walk! Thats all gone now. And this grotesque shell is my prison and my hell. I drag around on two canes. I fall down. Havent broken any bones. Fell on my face. Lost a tooth. But thats okay. I can handle it.
About four years ago, I lost my singing voice. It was beautiful, too. I was a drama major in college. I loved musicals. My voice was good enough to do what I needed to do on stage,... touch people. Then, one day, I got in the car, popped in a tape, and opened my mouth to sing. I couldnt make it work. I couldnt stop on a note. I couldnt get anything out right. Sometimes its there. Most often its not. And, even when it is there, its not right anymore. But sometimes, once in a while, if the medicine and the weather and whatever it is that is attacking my body are balanced just right, I can sing. And its so horribly painful. Its there, but I cant use it anymore because it may not be there tomorrow or even in five minutes. Its just there to tease me and torment me... But thats okay. I can handle it.
I was a teacher before I got sick. I only taught for three years, but I loved it. I wish I could go back to the classroom. When I taught, there were plenty of teachers. No one really cared for my ideas about teaching. I felt I had to conform. Now that teachers are desperately needed and I have the strength and will to fight the establishment, I can no longer teach. I havent the physical strength, and I am partially incontinent. That wont work in a classroom. But thats okay. I can handle it.
I was a computer programmer for some years. I have a degree in Computer Science, the real stuff. I did scientific programming which is usually classified. I cant do that anymore. I cant work 40 hours in an office or lab. I havent the strength. But thats okay. I can handle it.
So, a little over four years ago I decided I didnt want to die. I decided to live. The medication I was on was helping me manage the illness better. Instead of going to bed horribly sick one or two days a week and feeling generally lousy two or three more days, I was more stable. I could work if I could do it within my physical limitations. But what could I possibly do that would let me do that? Ah, yes. I could design web sites and do programming for the Internet. No problem. So, I returned to school.
After about a year and a half in school, I decided to try to find a job. Im on social security disability. I make quite a bit of money- more than a lot of people make working full time. But I wanted to return to work. Youd figure Id have no trouble considering my dedication and willingness. Forget it. Two and a half years later, I was still unemployed. No one wanted to let me work part of my hours at home. Companies just dont do that here. I interviewed with Geico at a job fair. They had a programming position. After a few moments, the interviewer just flat out stated, "We dont let employees work from home." It was a challenge. Just dare to ask. When I pointed out to another employer that my work would be on the Internet for the world to see, he lamely told me that his company just wanted their employees on site, full time. Period. End of discussion. Okay, so it was a problem. It wasnt okay, but I decided to let it go.
While taking a course to renew my teacher certification, I stumbled on, what was to me, a new field. Instructional Technology. It would be my salvation. It was perfect. It blended my two areas of expertise: teaching and computers. I was already a force to be reckoned with in the field. I could be really good. And then, stupid me, I decided that where Mrs. Me had not been able to get anyone to listen to me about working from home, Dr. Me could and would. So, I decided to get my doctorate. Then, I could help handicapped people find work and fulfillment and... life.
I sent off all of my material to a prestigious university. Go for the gold. Oh, my God. I got an interview. I knew what that meant. My husband has his PhD. They dont ask you for an interview unless you are pretty well accepted. Of course, issues might arise during an interview that would knock you out of contention,... and one did. Multiple Sclerosis. How was I going to handle the requirements of a doctoral program. Its a very select program. They only take a few. They didnt take me. Well, its not okay, and I cant handle it.
Why should I have to?
The nail in the coffin. The final straw. The end. So, Im dying. So, whats new?
One day I went into the Sams in Macon, Georgia. I dragged myself in one hot day on one cane so that I wouldnt have two to deal with it in the basket of the electric cart. No carts. Were they all busy? No! They were broken or being charged. I was in a mood. I asked for the manager. He was a jerk. Boy, was he a jerk. I finally got aggrevated enough to suggest that if they didnt want the business of handicapped people, why lie to us? Why not just take us out in the parking lot and shoot us if they didnt want us. It would be more honest. He threw me out. I cant blame him. Im dying. He didnt want me to mess up his store.
Its not okay, anymore. I cant handle it. I dont mind dying. I just dont want to take so long. And I dont want to look at it while I do it. Its sort of like looking at the needle when you get a shot. You know its coming. Youve accepted it. But you dont have to look at it.
But I do. I give myself a shot once a week. And I have to look. The funny thing is, it doesnt hurt. Its just the thought of the stupid thing poised above my thigh. The thought of that slender blade piercing my skin. And then I spasm, and it jumps around in my leg. It doesnt hurt then either. It just gives me the shivers. So, sometimes it hurts a bit. Just enough and just often enough to remind me that it can. But usually its just the queasiness in my stomach that accompanies the shot.
I am giving away all of my old clothes. I thought that someday I might be able to muster my self control and get back into shape. But the steroids have taken care of that. They give me strength and a chance to function, but they take away more of my body. So, I am giving that up. People think Im being generous. Im not. Im committing suicide. Its slow, just like my death. Im giving up another piece of myself.
I dont want to be in this life anymore. The fact that when I was healthy I was sensitive to the needs of others and tried to make the world a better place doesnt make me feel any better. The fact that I knew it was lousy to be handicapped and tried to make it easier for the less fortunate doesnt make it any less lousy. Its just as rotten as I thought it would be. Only now, its me.
Well, was writing this therapeutic? No! I dont feel better. I just feel more dead. Here it is, in black and white, and it isnt pretty. And theres no hope. Where can I go? What can I do? So whats the point? If you got this far, Im impressed. Im not sure why Im impressed, but it makes an impression... of some kind. Or did you just skip to the end to see where I was going with this. Well, Im at the end now, and I dont feel any better for having said it because theres still nowhere for me to go.
Maybe Im just bad. Maybe Im really useless and that is why I cant get a job. The resume is now so dusty and outdated. Its been so long since Ive worked. I tried to find a place to volunteer, to work for nothing, to show someone, at no risk to them, that I can do the job. No one wanted that. I guess they figured you get what you pay for. I tried, I really did. I got dressed up and really up for interviews. They were pleasant, and then I heard... nothing. They dont even write turn-off letters anymore. They just ignore you. You dont exist. Youre not real.
But I am real, and I dont want to die. Not yet. & Not this way. I dont want to be buried alive. And every time someone throws dirt on my coffin, I hurt. And I get angry. Its not fair, and its not nice. If you wanted this all neat and nice. Its not going to happen. Feelings are disjointed. They just are there. It isnt well ordered, and it isnt pretty. The sentences arent complete and, for that matter, neither are the feelings.
If you dont like this, then just forget it. Its what youre good at, anyway. Just forget it, and forget me. Ignore it. Thats okay. In the end, Ill have the last laugh. Because, in the end, youre dead, too.
Im not so sure this should be included. In death, there is no hope. You would think death is the absence of hope. A void. But maybe its not. Maybe its just a beginning. We wont know until we get there. Reading this, you might think I still have hope in this life.
I do believe theres no point in living unless youre learning and loving. So, maybe I have learned something from this. Im stuck in anger. Im not going to argue with that. If I accept it, then I have to die... now. Maybe Im not as ready as I think.
The point is, it is not always the destination that is important. The journey matters, too. What people have forgotten is that death is really a part of life. I wrote a poem when I was in the 8th grade. I would have been about 13. Its still true.
Life is to think, to feel, to be,
To have, to hold, to touch, to see,
The oceans, the rivers, the mountains, the sky,
To learn to live so that we may die.
If we dont keep company with our own death, then we can never truly live. My problem is that it is a little too close for comfort, and it isnt nice. It will be horrible and humiliating. I will be incontinent, perhaps unable to speak or eat properly, certainly unable to move around, and I might lose my ability to use mathematical reasoning. But Ill still be me. Thats the worst,... and the best of it. I will suffer the loss and be able to do nothing about it. But Ill still be aware. I think Id rather just check out,... and get hit by a train. I dont want someone changing my diaper. I dont want to be fed and know that each bite brings the humiliation of its passing.
The real reason for my suffering is that the world doesnt care. Once youre no longer perfect, whether it be a handicap or poverty or some other perceived lack, then the world doesnt want you around anymore. You become a reminder that they are mortal, and people dont want to remember that. They want to run away as fast as they can so that they dont have to face their own end.
Sure, I get the pats on the back and the attagirls. But their admiration is just a cover for their revulsion. They dont want to be near that which reminds them of their own helplessness in the face of their own futures.
Does it occur to anyone that if the world reached out to those who are suffering and made it a better world for them, they would be helping themselves, too. No baby ever got born hoping to end up on skid row. Kids dont list bum or loser as possible life choices.
If people helped those battered by life and made the playing field more even, they wouldnt have to be so afraid for themselves. Darwins idea of survival of the fittest isnt applicable in human society. In the jungle, the jungle makes the rules, and the fittest survive. In our world, the cheats make the rules and make sure they always win. The rest of us never had a chance. The best we could hope for was to tread water and maintain our positions. That works when you have everything working for you. But for me, it doesnt work anymore.
I feel like a little stagnant pool of water that has been lost on the side of the rushing river of life. I can hear it fly by, but it wont let me come along for the ride. It gets lonelier and lonelier, and it hurts more and more. The funny thing is, letting me in wouldnt hurt them at all. But life doesnt care. So, does that mean Im dead. Maybe I am, and I just dont know enough to let go and crawl in my grave. Maybe thats what the world is trying to tell me.