April 06, 2004
Dear Ordinary American Citizen,
For those whose lives that seem not to have been impacted by the tragedy of schizophrenia, this blog will be addressing the fact that schizophrenia is not only everyone's business, but also, the effect of this disease on your life and your loved one's, despite what you have been led to believe, is as real and alive as the people who have been diagnosed with it.
Those of us with a son, daughter, spouse or sibling cut down by such horrible, unimaginable suffering at such a young age, live every day inside a web of fear that you rarely hear of. I am not referring to our loved ones psychosis. I am however, referring to a system of care that has created so many cracks (chasms really) in it's delivey of services, at any point of entry our loved ones can and do fall through. Too often, despite heroic measures on our part, they land in a space well beyond our power to reach them. The potential for total loss and devastation, although immeasurable, is also far too predictable.
At the risk of sounding like a media basher, and a disgruntled viewer of the great American pursuit of sound bytes, the untold story of the schizophrenic journey and that of their families is nothing less than a modern day crisis of media misrepresentation of fact.
Don't get me wrong! No one appreciates the power of the media to heighten awareness regarding critical information that can and does lead to significant change more than I do. In fact, I not only honor this power, and those who are motivated by it's intrinsic reward, I count on it. Making a differece is some of the best life has to offer as far as I'm concerned.
But when it comes to this disease and the monster the media portrays, you have no idea how much your life could become better, safer even, if the truth of this illness were given the equal attention that is assigned to just about any other disease.
I for one am ready and eager to attempt to do just that!
Schizophrenia is a disease of the human brain. Period. Try to sit with this knowledge for just a little while longer. A disease? Hmmmmmmmmm? .......... Yes! A disease, like Alzheimers, Arthritis, Multiple Sclerosis, Heart Disease, and Breast Cancer. Human? .............. Yes! It is part of the human condition. It can happen to any one. Brain? ............. Yes! The single most crucial organ of the human body. We're not talking about functional loss of just one of the senses, like the deaf or the blind. Potentially, we are talking about functional deficits and malfunctioning of all of the senses; Sight, hearing, smell, taste and touch. Add to that speech, memory, mood, thought, balance and movement. Pretty pervasive if you ask me.
Has your life ever been touched by someone with a brain tumor? Would you describe them as crazy? Psycho? Nuts? Wacked?
Schizophrenia is a disease of the human brain. Period.
May 24th is National Schizophrenia Awareness Day!
Make it count! Learn more about the disease of schizophrenia, by visiting the home page of 'schizophrenia.com' .
Posted by Doe at April 6, 2004 12:22 AM
It is encouraging to hear that May 24th is the National Schizophrenic Awareness day in America. At least, somewhere in the world there is a beginning of a movement to bring about awareness about this illness.
Posted by: survivor at April 6, 2004 06:01 PM
I realise you want to be positive but this movement began years ago. You are neglecting that fact that many have worked on awareness of this disorder for many years now. It does take a lot of work to establish a day in the calendar before it is established. In a sense this day is an end not a beginning. Have you heard of walk the world for schizophrenia an annual walking, march, and fundraiser for research into schizophrenia?
Posted by: Peter at April 8, 2004 12:02 PM
Yes I have heard of the annual 'Wizard of hope' walk for Schizophrenia which is held in September from Ian Chovil's website. There are no such walks for Schizophrenia held in India. The Canadian embassy holds the annual Terry Fox run for cancer in Delhi every year where cancer survivors participate and some coverage is given in the newspapers. Yes I do realise that it takes a lot of work to establish a Day for awareness. I wonder if anyone can tell me how it all began and how the day was established in the calendar. If it is possible in one part of the world I am sure it can be done in another.
best wishes, Survivor
Posted by: survivor at April 8, 2004 08:24 PM
It began in Michigan by the Schizophrenia Foundation. Try Searching for it in your browser. It is a commemorative day, based on the work of one of our American advocate. it has only been established since 1997 I believe.
Posted by: doe at April 8, 2004 10:36 PM
My initial comment, Oh Doe NO!
Schizophrenia is not an excuse to not work.
Being comatose isn't a good enough excuse. That is so incredible.
On the other end of the scale - I spent the day throughing my son's right to an education around,they want to pull him out.
And his therapist spent an hour trying to convience him that maybe it wasn't a good time right now to apply for a job. They are the ones that told me it was time to apply for benefits.
Yes, you and many have done a lot of founding work. I read the Blue Ribbon reports - and I believe your Governor just may get it done. Ever State needs that.
I pray that in our lifetime, we will see more change for the good. I am just getting into this and boy am I learning from the best.
Posted by: Sandi at April 9, 2004 05:53 AM
This is the most right words I have come across... ....... to explain Sz, It makes people slightly more understandable//////////
Posted by: Nick at April 9, 2004 08:35 AM
Dear Doe, You continue to amaze me my dear sister! I recall my nephew when he would put on magic shows, dance shows and roller skating shows for the family! I loved him soooo much he spent so many weekends with our family in the country..dare I say I was his favorite Auntie? I find it so hard to connect with him now..I try but sometimes it feels like I am reaching through a three feet thick wall of molasses. Other times he is more lucid and available. You truly have the courage of a lion and I am constantly in awe of you. Your advocacy not just for your son but for all people with mental illness is divine. Your ability to paint a picture of the tragedy, grief, love, hope, battle,ignorance, faith the whirlwind of emotions, victories and losses is astounding! I love your son but more than that I love the way you love him! Maureen
Posted by: Maureen at April 21, 2004 11:43 PM
I read your sister's reply above and cried. I am so glad you have a sister who is so loving and understanding.
It is so hard at times, when no one will ask" "How is Tim doing".
Maureen, keep trying to connect with your nephew and keep asking Doe how things are going!
Posted by: Sue at September 1, 2004 03:20 AM
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