The following is an article I wrote for the Saratoga Citizen's Committee for Mental Health's biannual newsletter. After speaking at the Saratoga County Aging and Disability Network meeting, I was asked to summarize my experience (I've served as a SCCCMH board member for three years):
As an advocate for mental health awareness, I'm appreciative of any opportunity that comes my way. Having been involved with the Saratoga Community Citizen's Committee for Mental Health for three years, I'm able to advocate on a local level. Thanks to our dedicated president, Peggy Lounsbury, I was selected to speak at the Saratoga County Aging and Disability Network meeting (spring 2011). Their mission, To promote community awareness of the programs and services available to Saratoga County residents who are aging and/or disabled, and their caregivers, so as to better meet the needs of these ever increasing populations. But I had to ask the question. How could a mental health advocate contribute to their mission? It was an eye opening experience, to say the least. My view of recovery was reinforced. My brother was diagnosed with paranoid schizophrenia over five years ago. Society needs to understand that the act of overcoming this type of disability is what makes my brother (along with many others) a true inspiration.
Most people develop mental illness during their 20's-30's. My speech would focus on how disability impacts the life of a rather unassuming, young adult. I also described to the group how sudden onset of this disease can impact an entire family.
My brother's first brush with psychosis occurred while studying abroad, during his last semester of college. Up until that point, his future was bright. He could do almost anything he set his mind to. With four sisters, my brother was the last male to carry on the family name. To say that we had expectations would be an understatement. Not only was he highly intelligent, but extremely kind to others. We still ask ourselves, did we miss the warning signs? Could we have prevented this from happening? It took a long time to accept reality. In the end, we came to realize that no one could predict my brother's fate.
I pointed out that this type of disability did not result from a gradual progression. For many, an acute psychotic break is the equivalent to hitting a brick wall. Reality is lost or at the very least, left hanging by a thread. How could such a delightful young man be robbed of the most promising chapter in his life? How can a 21 year old be forced to live on Medicaid and SSI? My empathy has always run very deep. I still recall a time when my brother refused to take a volunteer position at the local vet. He was embarrassed. He said, "what will they say when they see I have a BS degree in political science?" My heart sank. It must be very difficult to swallow your pride, time and time again.
A decrease in normal function has so much to do with what are called negative symptoms. "They commonly include flat or blunted affect and emotion, poverty of speech (alogia), inability to experience pleasure (anhedonia), lack of desire to form relationships (asociality), and lack of motivation (avolition). Research suggests that negative symptoms contribute more to poor quality of life, functional disability, and the burden on others than do positive symptoms." (http://en.wikipedia.org/wiki/Schizophrenia)
There are very few illnesses which decrease overall function at such a young age. In order to reinforce this message, I played an 8 minute video which illustrates the road to recovery, with the help of my artwork. The negative portrayal of mental illness in the media only reinforces shame and fear. Could you imagine being silenced by stigma? All while you battle an invisible, yet consuming disability. The courage required to reach recovery is unlike anything I've ever seen.
When my presentation ended, I was surprised by the applause, and the questions. I thank Peggy and the Saratoga County Aging and Disability Network for allowing me to speak about a topic that is very close to my heart. They have given me hope that, with a little inspiration, society can embrace those who are less fortunate. Now, more than ever, I am convinced that self expression could make this world a better place, and heal a sister who was overcome with grief. My brother may be viewed as disabled but he has enabled so many to replace fear with empathy and shame with courage.