Even if Pattie Duke was broke her illness would be unique to her.
People with schizophrenia also have different symptom patterns and different degrees of abilities.
Some of the more crippling symptoms of schizophrenia are directly related to the quality of a patient’s life.
Researchers at the University of Toronto’s Quality of Life Research Unit define quality of life as “The degree to which a person enjoys the important possibilities of his or her life”
Their Quality of Life Model is based on the categories “being”, “belonging”, and “becoming”, respectively who one is, how one is not connected to one’s environment, and whether one achieves one’s personal goals, hopes, and aspirations.
Therefore quality of life is defined as the extent to which one is able to “become” the best possible person.
This may be the definition that John Kennedy had in mind in his Special Message to the Congress on Mental Illness and Mental Retardation.
We as a Nation have long neglected the mentally ill and the mentally retarded. This neglect must end, if our nation is to live up to its own standards of compassion and dignity and achieve the maximum use of its manpower.
This tradition of neglect must be replaced by forceful and far-reaching programs carried out at all levels of government, by private individuals and by State and local agencies in every part of the Union. We must act–to bestow the full benefits of our society on those who suffer from mental disabilities;
There is no one way to have a mental illness.
No one fully understands how the developing brain is damaged by abuse.
One of the residual great ideas left over from John Kennedy’s vision is the psychiatric case manager.
If you use a community mental health plan, you may have heard your counselor called your case manager.
The two terms are often used interchangeably.
Case Managers help patients to maximize their network of supports by intervening when necessary to compensate for deficits caused by the illness.
The Case Manager becomes a patients ally in the attempt to find a level of wellness that allows him to have what he or she believes is a life worth living.
I can give you a personal example.
I have a problem with forms.
The little squares confuse me, I get anxious.
When I get anxious, I switch and forget the form.
This phobic response to forms began in 2009 and it persists.
I think I may have mentioned my form phobia in another post.
To some extent, Kaiser itself set my expectations of Kaiser.
My psychiatrist really does extend himself the extent that he can.
And my first Kaiser case manager took the time to study my illness and to learn how it had compromised my life.
Had Dr. Stephanie Boyden not helped me fill out the forms for Federal Disability I would probably not have applied.
Had she not helped me fill out financial aid forms I would be trapped by thousands of dollars of unpaid medical bills.
Had Dr. Boyden not had been my case manager I would not have had the resources to discover photography, art and my writing.
Had Dr. Boyden not been my case manager I would not have the support of my therapist, Flora Colao.
My twice-weekly visits to Flora Colao are covered by Kaiser because of Dr. Boyden’s advocacy.
In 2012, I was so ill that I was taking my medications twice and sometimes three times a day.
I would take them and forget.
Dr. Boyden noticed that I looked ill and seemed confused.
She did not take “I’m fine” for an answer.
When she realized that my life was in danger she had me medically assessed and hospitalized.
Mandatory commitment is an awful and often right response to a mental health crisis.
A good case manager understands that the only way to mitigate the damage of a chronic or long-term illness is to help the patient to keep a secure support system.
Dr. Boyden left the clinic in 2013 and my care has been a mess ever since.
Yesterday I was so anxious and desperate that looked for her number and left a message to ask her how I could get her back as a case manager.
She returned my call within the hour.
Just the sound of her voice made me feel safer.
She told me that she is no longer working as a case manager.
But she took time out of her day to listen to the fears of a man who is not her patient.
The tragic reality is that some mental illnesses impair a patient’s life by slow erosion.
I have an alternate that always comes out to interact with new case managers.
He is competent and ever so insightful.
A clinician who had not bothered to study my case, and who knew nothing else about me would wonder why a man of my intelligence was being so lazy about a few simple questions and even refuse to help.
That’s a real liability when it comes to filling out important forms.