unless you have walked in his shoes
by Ramona Cook
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"Sir, may I ask a question of you?" That is the response I had for the newly appointed State Mental Health Director after he had taken a lengthy time telling us, the family members of those who suffer with mental illness, how it all would work and meet our needs in his new approach for our State Mental Health System.
It was obvious to me that he had no experience and did not have a clue about the reality of this life that we were living.
My question to him was," How many mentally ill persons have you dealt with in your life?" He hummed and hawed. I asked more pointedly, "How many persons have you ever taken to the hospital during an episode?" Finally he admitted that once he had taken a friend to the hospital. When I quizzed him further about his daily experience with mentally ill family members he admitted that he had no mental illness in his family. So with emphasis I said to him, "Then I promise you that you do not know what you are talking about and you need to ask us what works and does not work because we walk it out every day."
Tax dollars at work!
Why should a person with no experience be in charge of the State's Mental Health System? Why should such a person make decisions regarding how the needs of the consumers and the families would best be served, since they have no experience?
It seems clear to those on the outside of this world of mental illness that they can evaluate the life of those who live it. They would be ashamed if only they knew how inept they are in fact.
For those families who do live this life, and who live it apart from the otherwise "normal" world, know that our family member is a precious and valuable person and we recall a time when they were not ill. We saw the gifts and possibilities and heard the dreams they held for their life. We have seen in them the deep grief, and also experienced our own deep grief, because all the hopes and dreams seem to be gone; no longer achievable.
Added to the grief is the shame our society places upon our unwanted, undesired, unrequested condition. Then to have those who manage the Laws and medical provisions for the care of our loved ones to be without experience about that which they oversee is the beginning of the broken mental health system which we endure.
When taking either of my sons who were seriously ill with Schizophrenia, when I knew they needed to be placed in the hospital for mediation adjustments and I was being refused, I learned to make a loud statement so that everyone present could hear the conversation and I would make it known to the attending physician that if my son injured either himself or anyone else that I would hold the Institution and the Doctor legally responsible. It is shameful how we have to fight for the needs of our mentally ill persons to be taken care of properly. It is shameful and degrading to us and to our seriously ill loved one.
This is the life I lived for many years. I lived it alone because no family member was willing to enter into the pain of the walk. It is a necessity for us as family members who do engage in the walk, to recognize that the pain we endure is nothing compared to the one who suffers with the mental illness.
We do not treat those who suffer other diseases with such disgust. Diabetes and cancer, nor any other disability is met with such rejection.
I found a group in my area, and they can be found Nationwide, The National Alliance for the Mentally Ill. They provide a free 12 weeks course that gives vital information to the families and educates them about the various types of mental illnesses, the resources that are available in the community, about various medications, and much more.
The most valuable information however, is the shared experiences of the families who are living life with mentally ill persons. I recall that my great consolation was learning that my children were "normal" for the sickness they were experiencing. The acting out of heightened episodes is scary unless you understand that this is the nature of the disease they are suffering.
I have for 12 years facilitated those Family 2 Family Courses provided by The National Alliance for the Mentally Ill. I have seen miraculous changes in family members who have attended these classes. The greatest change comes by way of empowerment through understanding, acceptance of the life they must live, and community with those who know the same things they know.
I recall the father whose daughter had become severely Bipolar and her behavior was both disgusting and grievous to him. His introductory comment to the group was that he wished his daughter would die. However, after going through the 12 weeks course, he has become a staunch support and advocate for his daughter and the operator of a Day-Care House for those with mental illnesses in his County. I have seen this same occurrence repeated many times because the well family becomes educated about mental illnesses, and also about what they can do in living this life, lived on the fringes of hell.
I have much more to say, later.
Ramona Cook: 04/06/2013
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