I read two portions from my book and then answered questions and hosted a lively discussion regarding the paucity of support available for the mentally ill in this county. There was talk of beginning a support group on our own or under the auspices of NAMI (National Alliance for the Mentally Ill). We exchanged email addresses and they bought my book.
All in all it was a great night, discovering that there are people feeling as disenfranchised as I have been feeling....and it felt wonderful that my book may be some sort of reference or help to encourage them.
If you are one of those people who feel all alone with your illness may I recommend a great online forum Schizophrenia Forums. Here people meet in anonymity and talk about their illness or just life in general. It was this forum that finally got me to realize and admit that I have SZ. Prior to that I was in deep denial despite 40+ hospital stays. Part of the problem was that in the hospital you see people in the worst stages of their illness and I compared myself to these ill people and thought to myself "I'm not like that" (Never mind that I was the most frequently restrained person in the unit during my hospital stays). Anyway. On this online forum I met people who were successfully managing their illness and learned that there is a wide range of behaviors among the seriously mentally ill. There are those who hold down jobs and go to school ...and there are those who attempt to live without meds and you ride the bumpy waves with them as they frequently crash and burn.
Here I learned: I am just like you all are. And that must mean that I, too, have SZ. I feel terrible that I did not think to recommend this web forum to the people last night. I do have a list of the email addresses of the people who attended last night. Maybe I will send them all an email to mention this to them.
I was honored to meet these people. Most of all my heart went out to the desperate parents of mentally ill young people. These are people who have suffered in a way that only those of us with mentally ill children can understand. They are hurting and desperate. I so much wanted to encourage them....and I wish I had told them that the first few years of illness are the worst and the roughest. After that things often even out.
There was talk of starting our own support group here in Pike County and of somehow making our need known among the political entities that are local to us here. I would love to be a part of that. What an important legacy that could be! The mentally ill are silent sufferers. They are in need and their needs are not being met. We will remain silent, alone, and in need as long as we are easily ignored. The only way to break out of our lonely suffering is to make a noise.....a noise heard by others with mental illness....and ultimately a noise heard by the community and its legislators. The problems are immense. There are the financial stresses caused by unemployment and frequent hospital stays where insurance does not cover and the public funds are sparse. There is the sense of isolation....feeling that we are alone in our suffering, when the truth is there are mentally ill people all around us. There is the difficulty in socializing and making friends when our illness is one that isolates us and some of the symptoms of the disease alienation and difficulty in socializing. All of this must be overcome if we are to find a community within our community, where we can share, support and weep with each other.
And maybe in some small way I have contributed to that beginning to happen.