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Marvin: Your honesty and your longing for an answer to the recurring question in your life is prompting me to respond. You and I have nothing in common save our humanity. Our lives have been as different as is possible. Perhaps the only commonality we may share is that neither you nor my husband fought in the Viet Nam war. He was one who crossed the border and proceeded to transform my life with his love, and now is embracing his role as my caregiver with joy. This information may move your finger to the "delete" button immediately. But I hope it does not. I can, however, in some small way relate your feelings of guilt to experiences I've had growing up in this society as a girl. As a child I was taught that I was to bear the balance of responsibility for the success of relationships. I was taught that if I was assaulted, I was in some way to blame by my behaviour or my dress. And I still hear people referring either to themselves or others as being in some way to blame for their illnesses. This victimization of the victim seems to be ingrained in the social fabric. It is rare among the general population to find those who see the outrageousness of this assertion. Those who see that this is one hostile attempt to dismiss an overwhelming sense of pain being felt by another fellow human. (e.g. "She has throat cancer you know." "Yes, well she smoked.") And so I have gone looking to find individuals who have rejected this imposed guilt and are willing to unconditionally support my guilt free identity, as well as their own. People such as those you find on this Listserv are willing to do just that. I, too, have had a long wrestle with the shame of developing a chronic illness. I have rarely heard this aspect discussed. In fact only 2 individuals whom I have talked to have known exactly what I mean. It is the center of myself longing for its illusion of control to return, it's telling my husband how deeply sorry I am for having "spoiled it all", our plans, our hopes and dreams for the future, it's standing in a cash check out and feeling the stares of people in the line as my shakey fingers clutch at the change slipping through them, it's the face I wear when I want to show pride, joy, love and know it's coming across as irritation. So yes, I've felt shame. Sometimes it jumps out of the bushes at me again. But I look it in the eye, I feel it, I shed a river of tears, I write about it, and I try to see it for what it is. Sometimes the only help others can give is advice to ignore and deny the feelings and get on with our lives. For me this is not helpful. However I see their human attempts to reach out and I respect and am glad for that. But going through, rather than going around has always for me been a more constructive strategy. The goal is to channel these feelings constructively so that ultimately you find fulfillment in your life. But channeling them will not happen if all a person does is ignore, deny, trivialize them, or "just get on with their life." I have a lot to feel sad about. So do you. Your feelings are not silly. They're you and they want you to acknowledge them, respect their right for being there, hold them, embrace them and then they will subside. They will not be insisting on your constant attention. I think that Marine sargeant had something to teach both of us. He respected your feelings and your concerns. He respected your right to those feelings. We must do this for ourselves. I'm not a lecturer so I will stop here. You reached out your hand. I wanted to hold it for a minute. Barb Rager -----Original Message----- From: Giles <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Sunday, July 12, 1998 11:54 AM Subject: Long: Guilty or Not? >My meds are not working yet. >That fact may not mean anything but I’ve begun to wonder about my >thought processes when the pills are not working. Therefore, this is an >experiment, of a sort. >Today’s ramble is about guilt. Specifically, feeling guilty about not >being able to join the military. >I know, It’s silly. I am well past the age when any branch of service >would want me. But I’ve never sat down and said this is how I fell about >it. Due to an accident of birth I never had a chance to serve. During a >time when boys my age were going to Canada to keep out of the army, a >friend and I would approach the Marine recruiter and would attempt to >convince him that there must be some way we could join, that there must >be some job that a wheelchair would not prevent us from doing. That >sergeant never once complained or told us to stop bothering him. >Every year I was in college that same sergeant came back and every year >for six years we tried. Sometimes I wonder why he did not tell us to >stop pestering him. For me, I guess those discussions were a first >attempt to resolve the guilty feelings. After college it seemed I could >not avoid the men who appeared to be unable to talk about anything >except their service experiences. It doesn’t happen much any more. I >guess they’ve grown beyond it. This really is rather silly. Nobody >believed me when I said I would fight if I could. Now I’m told I should >be glad I was unable to join. Logically, I realize I probably would not >be alive now if I had been able to join the military. So many men and >women did not come back and those that did were changed in ways that I >cannot begin to imagine. What I continue to ask myself is why I cannot >get past this? Why is it coming back now? >My meds are working now. As I read what I’ve written during the "off" >time I see many typos, the sentence structure is the pits, and the >English is frightful, but the thoughts are mine. They are not less >valid. I still don’t have a answer. >Why do I still feel like taking the world by the neck and yelling "It’s >not my fault! I have no reason to feel guilty! I’m here and I’m not >sorry!" >Wait a minute! >Maybe that’s it? If so, it’s even sillier. >Why should I have feelings of guilt about being here at all? >Nobody In my family has died. >But when I stop and consider the matter I’ve been conditioned for the >opposite state. The doctors told my parents I would not see my 20th >birthday. Every year when I returned to summer camp there were friends >missing due to lung failure or some other complication due to the >neurological disorders we had in common. I learned that yesterday was >gone, to be forgotten, that tomorrow was not here yet and after tomorrow >did not exist. My parents did not plan for high school and everyone >seemed surprised when it became a requirement. My first case of future >shock came when a small gentleman arrived shortly after my nineteenth >birthday wanting to know why I had not registered for the draft? I >carried that card around for years, dead certain that if the government >could find a never employed teenager they would know if I did not have >that card Nobody planed for college. I because that was beyond tomorrow >and nobody else because the odds were against it. >Then came high school graduation and I woke up. >I had no skill worth mentioning and my industrial arts instructor had >just told me I should look for another line of work. I found myself >again doing the unexpected. Call it luck, providence, God, or >stubbornness but I had managed to outlive most of my childhood friends >and was on the verge of doing something I’d never dreamed of, leaving >home. That sort of brings me back to why do I feel guilty about being >alive? This is really stupid! >I’ve got as much right to be here as anyone. >Upon reflection, I’ve taken advantage of every opportunity given me and >if that advantage came as a result of a physical disability, I played it >for all it was worth. >I did not think the world owed me anything, but I did not turn down what >was offered. Perhaps what this long nonsense is about is this. I’d >nearly forgotten rules one and two. >1. The world is not going to make adjustments because I’m different, >adapt to it. >2. Yesterday is gone, forget it. Tomorrow is not here, don’t fear it. >Life is today, deal with it. > >It’s slow going, but I’m getting there. > >Marvin Giles >