If A Tree Falls In a Forest...
If a tree falls in a forest, and no one hears it ... does it make a sound? To the chronically ill, this is more than just a philosophical question.
We are people living out of the loop and our connection to the rest of the world can be tenuous. Some of us have more of a social network and some of us have less.
Some people with a chronic illness are very much alone.
Most people don't want to hear the long descriptions of symptoms, the loneliness, the feelings of isolation and alienation. They don't want to be the sounding board for the person who feels they've lost any normal semblance of having a "witness" to their life and existence.
The invalid is very self-absorbed. They have to be. It is a full-time job rebuilding their life and they can't afford NOT to be very, very focused upon this. And they will repeat, and repeat and repeat the things that they need someone to hear.
When the sick one has a revelation, and no one wants to hear it, they are lessened. Their sense of self, of their place in this world, becomes precarious.
I remember being told by a well-meaning friend a few years ago, that I should not think that my value as a person was any less now that I was not able to "produce".
But she was wrong.
Should my value be less? Should my life be less significant than the life of someone who is healthy and productive, connected to others through activities, who makes an impact on the world and other people? No, of course not. But it is less. I started out believing otherwise but over the last four years, I have had it pounded home to me.
In a family gathering, the sick kid may be in the background, on the outskirts. He is the least able to draw attention to himself, because he is weak and easily tired. And he has, really, very little to say. He has no stories about school or work to tell. He has no achievements to share and be praised for.
His biggest achievement lies in the fact that he managed to get out of bed and dressed, and now is curled up in a corner of the couch, while the people around him share their normal life.
Lucky is the sick person who has a champion in their corner. And that champion is likely carrying a heavy load. Because the sick one has a great need to be heard. To be affirmed and acknowledged. To talk about their symptoms, their fears and their hopes. They fear that, like the vampire, they have no reflection. They do not have an effect on the world around them. They throw a pebble into the pool and the ripples are so insubstantial that ... they fear that they may be disappearing. And that they may disappear without anyone even noticing.
That's why I'm here. Because I fell, a long time ago, and I want to be heard.
Can I get a witness?
Reprinted with permission from http://www.ncubator.ca
We are people living out of the loop and our connection to the rest of the world can be tenuous. Some of us have more of a social network and some of us have less.
Some people with a chronic illness are very much alone.
Most people don't want to hear the long descriptions of symptoms, the loneliness, the feelings of isolation and alienation. They don't want to be the sounding board for the person who feels they've lost any normal semblance of having a "witness" to their life and existence.
The invalid is very self-absorbed. They have to be. It is a full-time job rebuilding their life and they can't afford NOT to be very, very focused upon this. And they will repeat, and repeat and repeat the things that they need someone to hear.
When the sick one has a revelation, and no one wants to hear it, they are lessened. Their sense of self, of their place in this world, becomes precarious.
I remember being told by a well-meaning friend a few years ago, that I should not think that my value as a person was any less now that I was not able to "produce".
But she was wrong.
Should my value be less? Should my life be less significant than the life of someone who is healthy and productive, connected to others through activities, who makes an impact on the world and other people? No, of course not. But it is less. I started out believing otherwise but over the last four years, I have had it pounded home to me.
In a family gathering, the sick kid may be in the background, on the outskirts. He is the least able to draw attention to himself, because he is weak and easily tired. And he has, really, very little to say. He has no stories about school or work to tell. He has no achievements to share and be praised for.
His biggest achievement lies in the fact that he managed to get out of bed and dressed, and now is curled up in a corner of the couch, while the people around him share their normal life.
Lucky is the sick person who has a champion in their corner. And that champion is likely carrying a heavy load. Because the sick one has a great need to be heard. To be affirmed and acknowledged. To talk about their symptoms, their fears and their hopes. They fear that, like the vampire, they have no reflection. They do not have an effect on the world around them. They throw a pebble into the pool and the ripples are so insubstantial that ... they fear that they may be disappearing. And that they may disappear without anyone even noticing.
That's why I'm here. Because I fell, a long time ago, and I want to be heard.
Can I get a witness?
Reprinted with permission from http://www.ncubator.ca
Posted by BlueRibbonsForME at 6/2/2009 2:39 AM 
Categories: me/cfs,stories,CFS advocates
Tags: me/cfs. blue ribbon campaign stories from people with disease
Categories: me/cfs,stories,CFS advocates
Tags: me/cfs. blue ribbon campaign stories from people with disease
YES. You have a witness right now - me. I gobbled up and saw myself in every word you wrote here. It is something I've been wanting to say but could not articulate myself. Thank you SO MUCH from the bottom of my heart for doing it for me. I really really really understand this. I really hear this, I really feel this myself. Thank you. So grateful I am in tears.
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Yes, I will be your witness also. Your courage and strength of soul will carry you far. Your articulation is your strength and you have found your voice. Maybe it was always there and now it has risen to the surface and is being heard. You are old beyond your years or younger at heart than your years it doesn't matter. The world will now HEAR you because we of the blue ribbon will spread your words and bring you into our fold and comfort you and bring you up to the light and out of the darkness. Be patient we are just beginning our collection of champions but we grow with every second of every day all around the world and you will become one of our champions for yourself and others. Be strong, take care and be safe. As Dylan Thomas has so many times been quoted "Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light." We all can rage against the dying of the light in our own way for our own reasons.
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We demand too much of ourselves in the West. We worship people who sleep only 2 - 6 hours a night - despite studies that prove you'd be in better hands with someone whose blood alcohol level was close to 0.3 than you are in the hands of someone that sleep deprived. We tell people they need to take care of themselves, go on vacation - but when the worker comes back, anyone who needs his or her help can just wait, because the backlog of work will be so overwhelming it will take up to a month of 16 hour days and working weekends to get the desk to the normal level of frenetic activity. And despite studies showing that working more than 8 hours a day makes productivity decline, we still force long hours on people. Most salaried jobs require 10 or more hours a day on a regular basis, and most hourly jobs have mandatory overtime and require 1 - 2 extra shifts per pay period (usually 2 weeks). We tell people they need to relax, but by the time they get done with the long work hours, they're rushing to get errands done, pay bills, get meals on the table, clean the house, do the laundry, and make time for appointments they can't put off anymore. Maintenance appointments get back-burnered until there's no longer any way to avoid it. Show any signs of illness or weakness, and people don't want to be around you - so you can lose your job if you're in the public eye because "customers don't want to see sick people," and if you aren't in the public eye, you can lose your job because you're "dragging people down and affecting morale negatively." When you go from healthy to chronically ill, you're squeezed out of a job, preferably fired so that you won't be eligible for unemployment - which is paid, by the way, by the employer via taxes. Or you'll be laid off, with the employer hoping you'll find a different job before you're taking unemployment too long. And who's to blame for the chronic illnesses we get for overwork? Obviously, we are - we weren't taking care of ourselves and had bad health habits. Have an "invisible illness" lie ME/CFS? You're obviously in need of serious psychiatric care; those diseases aren't "real" like cancer or pneumonia. Apply for your employer's disability to get a rest, and when you return, you'll be lucky to get a job at a fourth the pay of the one you had - and because you took disability, anyplace to which you apply for a job is going to pass you up in favor of someone else they can overwork. And when you can't work anymore, because you've been run into the ground, the government puts you through the wringer trying to prove you really could work if you wanted to, so you must not want to work anymore, and obviously you're lazy. In the meantime, you've conserved as much energy as you can for work, so your social calendar's been empty and you're isolated.
And the bugs that probably cause these illnesses have been passed on to our children and grandchildren, ruining their lives before they've had a chance to live.
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