Rosemarie S. Fee -- A Remembrance of a Special Life
On December 6, 2010, Rosemarie S. Fee – Ro to her family – passed away, peacefully and quietly, slumping over in her armchair at home, of an apparent brain aneurism. Every human being’s life is unique and valuable, however Ro’s life was truly special. For fifty (50) years, she lived with one of the the most devastating illnesses it is possible to have, chronic paranoid schizophrenia. This tribute is meant to honor Ro’s special life.
Ro was first and foremost a much-loved daughter and sister. When the full force of Ro’s severe and persistent mental disorder struck at the age of 18, it included hallucinations, delusions, hearing voices, a huge, almost breath-taking, break with reality, to the shock and consternation of our family. All the more unbelievable to us since, as a child, Ro, the first-born of four, had always been the sweetest, gentlest, best-natured of the siblings making her symptoms all the more shocking. Seeing the illnesses so grossly distort and destroy her thinking and emotional functioning was very hard to fathom.
Our parents spent the next forty years seeking treatment for Ro.
Throughout that time, our family was able to have Ro live at home, until her death at 66, where she was loved, protected and cared for. For many families with loved ones with severe, persistent mental illness, it may not be possible or appropriate to have a loved one remain at home; for us it was doable and for this we will always be thankful, as it meant a great deal to Ro to be at home with her family.
Beginning in the 1960s when Ro’s schizophrenia first manifested itself, Ro’s care providers considered all possible treatments. It wasn’t until the late 1980s that a new drug, clozapine, was made available that Ro’s functioning and quality of life was improved. Clozapine was not a cure, but it was a game-changer for her, it removed the delusions, made some fairly normal conversation possible, and made interactions with others more possible. One drug, in 50 years, and that discovered, as acknowledged by researchers, due to serendipity. .
Our family firmly believes there was a special purpose and meaning to Ro’s life, not the least due to the many gifts she gave us during her life. Among those gifts was the strengthening of our faith; we never understood why she should have to suffer this illness so long. Nonetheless, her living that life as best she could, trying to do as much as she could, right up to the very end, and our somehow being able to care for her, across generations, for such a long period, was in itself a statement of faith in a purpose beyond our understanding, and faith in the ability to work together to cope.
Ro was also a teacher, helping us to understand the importance of family, love, loyalty, persistence, and just hanging in there day-to-day. Ro gave us the gift of inspiration: the creation of this nonprofit, NHMH – No Health without Mental Health, was inspired by her courageous example of living with serious mental illness and persevering. Ro taught us about dignity and respect; no matter how difficult living with chronic psychosis, all the crises, ups and downs over so many years, she always maintained a sense of herself and her connection to our family. She always tried her best. She also taught us over the years that self-stigma, for those who suffer from the illness, can be every bit as destructive as the societal stigma and how crucial it is for families and friends to provide them with constant encouragement and positive feedback, in order to counter those culture-induced feelings of negative self-worth.
We urge parents to insist that your primary care doctor screen, assesses and monitor your child for both mental and physical health functioning, as part of routine checkups. Mental disorders are a developmental brain disorder, meaning they typically begin in a child’s brain as it develops from age 0-10. The goal of mental health treatment today is to preempt chronic disease, catching mental health conditions as early as possible. As neuroscience steadily advances in the coming decade, more attention will focus on early intervention and prevention of mental disorders.
If you have a friend, or know of a friend’s relative, or co-worker or just notice a stranger with a mental health problem, don’t shun them. Urge them to seek treatment, offer support, understanding and respect, remembering that mental disorders are noone’s fault. Try to be there for them, simply to listen, if nothing else. Realizing that there are basically two kinds of mental disorders: common, such as depression, anxiety, phobias, and substance use disorders; and serious, such as schizophrenia, bipolar and major depressive disorders. Common mental disorders such as depression and anxiety etc are the most common and disabling disorders worldwide.
A final encouraging note about Ro’s life: our family had begun to notice in the last few years that something was happening regarding Ro’s increasing awareness, she was observing more things around her, commenting on them, doing more, going out more. Something was happening. After 20 years on clozapine, we think perhaps her brain cells were regenerating. We urge families not to give up hope for their loved ones’ ability to lead an improved quality of life, even after decades of the illness. Finally, our family encourages families with loved ones with mental disorders to consider posthumously donating your loved one’s brain tissue for brain research. This tissue is urgently needed. Our family had thought about this in advance, and upon Ro’s death were ready to, and did, make, a gift of her whole brain to the Harvard Brain Tissue Research Center (see www.brainbank.mclean.org), along with her complete med/psych records from her local medical and psychiatric clinics. It’s another way the meaning of Ro’s special life can extend into the future helping others.
Florence C. Fee
Executive Director
NHMH – No Health without Mental Health
posted January 2011
Published in S.F. Chronicle
Dear Florence, I love this. So much of what you say is true for my relationship with my brother
Dr. Jill Bolte Taylor
Author, My Stroke of Insight
(Penguin 2008)
The other 90%, of patients with mental disorders, go to primary care doctors to be seen. Of that group, 70% currently do not received evidence-based mental health treatment by non-mental health practitioners.
(Ibid)