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Rated: 18+ · Letter/Memo · Emotional · #1019353
A letter account about experiencing CFS with pain in the viewpoint of a 20 year old.
Dearest Friend and World at Large,

I am here today to tell you a most shocking truth. I am not “OK” as I always claim to be, not physically, not emotionally. In fact this pillar of mental strength you see before you is crumbling, one fleck at a time. I know this must disappoint you, seeing as I was supposed to fill so many expectations, but it’s true. I know this may even frighten you, because if something so invisible can hit me like a brick wall why can’t it hit you too? I can’t answer you, nor can I comfort you, as in life there are no guarantees. In a few years you may find yourself sitting right next to me in the darkened corner of my room, in the silence, gently resting your eyes in a divinely mute understanding. It may come to pass that you too will have only a TV to give you a glimpse of the outside world.

I know you used to think I had the world in my hands. I know you always looked at me like I’d be the one to carry on my good name with pride. I saw the flicker in your eye turn to internal tears, as you looked away, the day I told you my piteous nineth grade education was going to have to be it for me. I know you may have thought that I was just breaking under emotional stress when I started cutting out the world from my life. You may have even thought I’d get better when I started complaining about the great physical pains that were pulling me down. Perhaps even now you still hold hope for me, a trapped hermit with half a life and no experience with the real world, even six years later.

If only you knew how much I long to be able to work at a job, to be useful to someone! Do you think I like being here? Do you think I feel good about being so whole heartedly dependant on other people? I don’t. I wish you knew how it felt to me when I watched you one at a time leave my side. My heart was crushed when after a year’s absence from school only three people of the usual twenty came to celebrate my birthday. It was my sweet sixteen, I wanted to make a memory of it but all, I’m left with is bitterness. My bitterness grew when I saw even those three friends leave me too. I don’t ask for much, just a phone call once or twice a year, a Christmas or birthday card, and if I’m really lucky I will cherish actually seeing you face to face every now and then. And yet I am alone and no one believes me except those in the same situation I am in. They are my saviors, they are survivors, and without their inspiration I’d be in shambles.

I know I look fine when you see me, but you have no idea how long it takes for me to get this way. You don’t know it but sometimes I fast for almost an entire day before meeting you. This is so my stomach has nothing to react adversely to. I don’t let you see me when I’m at my worst, huddled in a darkened room listening to oldies drift softly into my ears, played in a loop so my mind doesn't forget what joyous human voices sound like. You don’t see me when my hair is greasy because I can’t manage to stand up long enough for a shower. You don’t see my bloodshot eyes after tossing and turning in pain all night. You don’t smell the stench of the hot rice filled socks I use to ease my pain. I won’t let you see these things. Perhaps I’m still protecting you or perhaps I’m still protecting myself. In all honesty though, despite the fact I loathe how people think I’m lazy or incompetent, I would rather you think this then to actually know what my life is like.

You know what really stings though? Going to specialist after specialist, doctor after doctor, until my insurance runs out, and each time having the doctor stare me straight in the eye and tell me they don’t have the faintest idea what’s wrong with me. It’s been six years! You know how many vials of blood I’ve given to labs all across this country? Do you have any idea how many X-rays, CAT scans, and other exotic tests I’ve had to endure to learn the medical establishment knows nothing? I have a diminishing faith in Western medicine and technology, and just the thought of a hospital can now bring on panic attacks which I still hide like an animal from you. You have no idea the dread that fills me when I walk into yet another hospital, and smell that familiar scent of disinfectant, and see those overly cheery paintings hanging on the walls. You don’t know how when I finally make it into the doctor’s office I just want to crumple up into a ball and cry my eyes out. I tell you I don’t cry, and I don’t, for crying to me is symbolic still of weakness. And yet it’s never been more straining not to cry then when the doctor comes in and states the same things everyone else has said. I must not though, or else they’ll think my problem is mental. It’s not. You think I want to live in my parent’s basement until I croak, running up massive hospital bills and cutting out all joy in my life on purpose? Sometimes I wish I was, because at least that’s an answer; at least I can fix that but alas it’s not true and I alone lay guardian to this fact.

I’ve heard you say it a hundred times, have watched those same words drop off your lips, time after time. You say I have too much on my plate, and I should give up my pets. You know what? They are the last thing I have. They never left me like you did. I will fight tooth and nail to keep them, even if it is for just a few more months. I know even this simple joy will come to pass as I get worse, for I will not make them suffer on behalf of me, but at the same time I will not be saying farewell to any of my pets until I am absolutely certain I’m at a point of no return. I have given up everything else; why must I give them up too? I have no social life, no completed schooling, no career or job, no significant other to cheer me up. My life is becoming increasingly devoid of joy.

I hear you say too that I am escaping into my own world too much, that it’s unhealthy. Don’t you understand my imagination is the only thing keeping me sane? It is indeed my only escape from this house! My writing brings my mind to consciousness again, and the characters I create seem more real to me now then you do, but of course you wouldn’t know that because you’re no longer around. You wouldn’t understand why reading is so important to me either, why I soak up every word like a sponge, as each book releases me from my living Hell into someone else’s existence. I doubt you would even want to try to understand why I pray to fall into the comforting grasp of sleep so I can be whisked away into some vivid dream, an alternate reality. It’s sad though, even my dreams mock me as I am rarely able bodied in them either, it’s because my mind has forgotten what it’s like. Sometimes when I do dream of being normal I wake up wishing desperately to go back.

I don’t know where you are anymore, but I hope you are well, because I’m not. Every day is a new challenge for me, and my pain never quite goes away. Every time I stand or walk around it gets worse, and some days I don’t get out of bed for a week or more. That is why I didn’t pick up the phone half of the times you called, not because I was mean or spiteful. My mind becomes blurred with fatigue and I find myself staring at the refrigerator pointing because I can’t think of the word fridge. I must look like a moron to some! At other times my mind is awake and alert, dying for something to learn, someone to interact with. I may be an introvert by nature but solitary isolation and confinement isn’t good on anyone’s mind. I crave to talk with you, or anyone, to hear another human voice or better yet laughter. Laughter is the sweetest music of all. Some days I go through strange waves of cravings, longing for just a simple human touch, perhaps a friendly hug. I'm quite aware of the fact I appear to most as a somewhat emotionally distant introvert but even the most hardcore introverts occassionally long to reach out to others from time to time.

As you can see I struggle not only physically but mentally and emotionally. In fact I wish I could take on all the ills of the world and be the one soul sacrifice needed in today’s human society. To know that there are others, perhaps millions, like me out there makes my heart weep and bleed. No one deserves a life like this, not even you my friend. I want you to know I forgive you. Hate and bitterness never solved anything so I’m going to try and be better and give you my blessing in your life. Don’t cry for me, don’t pity me, just remember me the next time you see a dented three wheeled Matchbox roll across the kitchen floor, for that is a perfect metaphor of how I feel. In return I will remember you gently not for the bad times but for the good. I will hope you can now go forth in the world and take some little lesson you have learned from me, perhaps compassion, perhaps understanding, perhaps even love, and bestow it on others. It is only in this way that anyone will ever heal.
Good luck my friend, good luck,
Typhani


This letter was written and entered into
 Yes, I Can Smile and Still Be in Pain! Open in new Window. (ASR)
Disabled? Chronic illness/chronic pain? Write a letter to friends and family.
#1012792 by Kenzie Author IconMail Icon


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