A letter to Linda
Hi Linda,
I am very sorry to hear about your struggle. I have been very fortunate with dystonia, with some very difficult times where I was completely incapacitated. I can't speak much to what you should do about the system of hospitals and doctors... but I think I know a little bit about what your son is going through.
It sounds like your son has more than torticollis ("neck" dystonia). If he is experiencing abnormal movement in his hands then he may have generalized dystonia.
I am 29 and started having dystonic symptoms at 27. Within a month I had to stop working entirely and was severely disabled for the better part of 2 years.
The process of living with a disability, in going through the hurdles of the medical system and filing for benefits is such a tedious one, especially when on a daily basis you have to deal with the pain and lack of control over your body. Those are 2 different battles that one must endure every second and every minute of the day, 7 days a week with little or no breaks. Emotionally it is exhausting and for the most part being tired about your pain and about life becomes numbing. Tack on the effects of some neurological drug, and the human being becomes less human and more a machine.
I am sure you already have experienced some of this and I know that your son is lucky to have a caring family. I know too that it must be exhausting for you. Thank you for taking care of him.
I know that most of my psychological pain had more to do with my own need for independence than anything else. I hated feeling like such a dependent drain on everyone and tried not to ask for much. I suspect that your son is going through the same thing. He doesn't want to be an additional drain for you and your daughter, but he does not want to tell you that.
In terms of dystonia, I know that the relatively lack of knowledge to the public and the system was additionally discouraging to me. In all honesty I didn't think that I would ever get better, mainly because there was no information or specialists that focused on helping people. Yes, there were specialist neurologists and centers and the DMRF. But I could not see any type of relief or real help, at least not in my lifetime. At some point I decided that there was no point in fighting a battle already lost. My life was already over.
Your son is probably exhausted from feeling discouraged and battling his condition. He needs you as his advocate, the clarity of mind to speak and think for him when he cannot. If he has no hope then you must have hope for him and relieve him of the pressure of having to have hope. I know that is a lot to ask of you and your family. If needed, I recommend seeing a counselor at an independent living center as well as getting counseling or therapy for yourself or your daughter.
I have cc'd my sister, who at many times during my worst moments was clear for me when I could not be.
I wish you all the best and pray for your sons recovery.
thanks,
RJ
I am very sorry to hear about your struggle. I have been very fortunate with dystonia, with some very difficult times where I was completely incapacitated. I can't speak much to what you should do about the system of hospitals and doctors... but I think I know a little bit about what your son is going through.
It sounds like your son has more than torticollis ("neck" dystonia). If he is experiencing abnormal movement in his hands then he may have generalized dystonia.
I am 29 and started having dystonic symptoms at 27. Within a month I had to stop working entirely and was severely disabled for the better part of 2 years.
The process of living with a disability, in going through the hurdles of the medical system and filing for benefits is such a tedious one, especially when on a daily basis you have to deal with the pain and lack of control over your body. Those are 2 different battles that one must endure every second and every minute of the day, 7 days a week with little or no breaks. Emotionally it is exhausting and for the most part being tired about your pain and about life becomes numbing. Tack on the effects of some neurological drug, and the human being becomes less human and more a machine.
I am sure you already have experienced some of this and I know that your son is lucky to have a caring family. I know too that it must be exhausting for you. Thank you for taking care of him.
I know that most of my psychological pain had more to do with my own need for independence than anything else. I hated feeling like such a dependent drain on everyone and tried not to ask for much. I suspect that your son is going through the same thing. He doesn't want to be an additional drain for you and your daughter, but he does not want to tell you that.
In terms of dystonia, I know that the relatively lack of knowledge to the public and the system was additionally discouraging to me. In all honesty I didn't think that I would ever get better, mainly because there was no information or specialists that focused on helping people. Yes, there were specialist neurologists and centers and the DMRF. But I could not see any type of relief or real help, at least not in my lifetime. At some point I decided that there was no point in fighting a battle already lost. My life was already over.
Your son is probably exhausted from feeling discouraged and battling his condition. He needs you as his advocate, the clarity of mind to speak and think for him when he cannot. If he has no hope then you must have hope for him and relieve him of the pressure of having to have hope. I know that is a lot to ask of you and your family. If needed, I recommend seeing a counselor at an independent living center as well as getting counseling or therapy for yourself or your daughter.
I have cc'd my sister, who at many times during my worst moments was clear for me when I could not be.
I wish you all the best and pray for your sons recovery.
thanks,
RJ
posted by RJ at 12:17 PM
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