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Those of you who follow me on my Facebook page, http://www.facebook.com/steveshouse.steveshouse, have probably noticed a “remodeling”, if you will, of the types of causes or ideas I am following and posting to my timeline. These choices have been deliberate and derive from the original premise of why I started building StevesHouse. The overwhelmingly positive response to my two blog posts about Arizona Gives Day is what has propelled me in this new direction. Although philanthropy is a essential building block of the foundation of StevesHouse, I want what I am doing to be understood in practical terms. I am hoping by putting both a human and humane face on mental health issues as well as focusing on HIV/AIDS, I will be able to bring understanding to bear on these two areas greatly in need of not just understanding but respect. What follows is deeply personal and extremely heartfelt. Although it is a story of my family, it could be anyone’s family.
When I began to consider the possibility of building StevesHouse to sell my wares to the public, I contemplated two separate issues to champion. One was mental health issues, specifically bipolar disorder. The other was HIV/AIDS. HIV/AIDS quite simply was a “no-brainer” as a cause to champion since my beloved brother, Steve, died of AIDS, and it seemed logical to do something in this arena to honor him. Thus StevesHousebyPaula was born.
The other issue that also received a great deal of thought from me was bipolar disorder since my family has been so greatly affected by this and other mental health issues. I think some of my initial hesitancy about championing mental health issues had to do with the fact that we never discussed these issues within the family until we were much older. It was as if the issues didn’t even exist. Clearly, our mother had bipolar disorder, but the fiction of her having multiple sclerosis was a more acceptable explanation for some of her “eccentric” behaviors, particularly when she was so depressed that she was unable to get out of bed for days at a time. When I was an adult, my father discussed one of his irrational thoughts with me about what he feared could have happened to my mother should anyone have discerned what she really had. Before the discovery and licensing of Lithium, there were few good treatments for bipolar disorder. One of the approved treatments was pre-frontal lobotomy. Today, we know this treatment had no efficacy, whatsoever, but I believe it was a desperate measure for a devastating disease without effective treatments. Although this is certainly barbaric by today’s standards of care, I believe this treatment was performed with the best of intentions for a disorder/disease that was poorly understood and frightening to deal with. My father, who was extremely intelligent, very well-educated, and in the medical field had this wholly irrational fear that someone would spirit my mother off somewhere and perform a pre-frontal lobotomy on her. He knew this would never happen, but, nonetheless, these thoughts plagued him.
And then my mother passed this disorder on to my brother, Steve. Attitudes about mental health issues, and bipolar disorder specifically, had moved somewhat beyond the “dark ages” that enveloped the understanding of this disease when it first presented itself in my mother. By our generation there were both better and more acceptable medications available for treatment of bipolar disorder, starting in the early 1970’s with the licensing of Lithium. Additionally, there were well-established algorithms for health care practitioners to follow when they were treating their patients. The physician caring for my brother apparently also had a sound understanding of bipolar disorder so Steve received not only the optimal care at the time for HIV, but also bipolar disorder. Since Steve was willing to discuss both HIV/AIDS and bipolar disorder with me, I am quite certain he would approve of this addition I am building for StevesHouse. He most likely would have been outspokenly in favor of it. What I am doing is not only honoring him but also helping myself “make loss matter.”
In subsequent posts, I will discuss other mental health issues that impact our lives. I hope this will encourage us to treat mental health issues with dignity and respect, as well as remove the fear that stands as an obstacle to seeking and receiving appropriate care.
More, much more, to follow. Thank you,
Paula