Tell Your People About Me

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Tell Your People About Me

This letter comes from a student I used to work with when I taught at the university.Since I last heard from him several years ago, he has struggled trying to get disability payments, contend with his altered brain and behavior, as well as further medical problems and brain surgery. He and his friends and family have become estranged and he lives alone, trying to deal with all his problems with minimal help.

Tell your people about me. Tell the families and friends that the difference between a life and a living hell can be as simple as a little understanding, a kind word, a little attention. I am the poster child for neglected old brain-damaged cripples and no one should have to go through this. I know I am not alone.

I know I am hard to get along with when I am in pain or my brain isn't working. I also know that when I upset or irritate others it is not intentional. I rarely even know what I've done to insult or irritate someone, just that I have. Tell your people that we live in a prison, not of our own making, where the isolation from people and lack of ability to control emotions or even our own physical actions, and the inability to communicate is horrendous.

I've always thought that people have a certain amount of ability to handle stress. When you push them too far they are less and less able to be what they want and become more reactive and impulsive in negative ways. We hurt, we are frustrated, we are angry, we are in pain, and in many ways we cry out for someone to help us, but rarely get what we so badly need.

If I had just one thing I'd like family, friends, and professionals to know about people like me it's that at the very time when we most need their help and understanding, we are most likely to be under the worst stress and least likely to be pleasant to be around. This creates a terrible catch-22 where at the point where we most need help we are least likely to get it. Where we most need understanding we get the least of it.

I know they are frightened of us, feel burdened by us, and don't know how to deal with us. We're all human with human failings, after all. For myself, I can say that I don't hate anyone for this, but can understand why some do. I am angry. Furious, in fact. But it is because of the situation and the misery it inflicts and not directed against people. It's easy to blow this anger off as a product of an unbalanced mind, but consider that to a 'normal' person their experience with misery, isolation, and pain comes in short spurts. When you live it constantly, and know it will never change, it is an almost impossibly hard burden and that changes how you deal with it in ways a 'normal' person can't comprehend.

An illustration of this might be where a person is immobilized and unable to speak. Someone has set a hot iron on them inadvertently. Through the pain comes the horror of not being able to do anything about it, tell no one about it, and the anger at the unfathomable injustice of an innocent accident that has lead to such a place. It's worse when that person knows if someone would just look and see the problem they could do much to alleviate the pain. Worse yet when people ignore it.

Keep up your good work.

D. F.

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