Have you had the chance to speak with someone diagnosed with Paranoid Schizophrenia? Would you be able to understand them? What questions would you seek to have answered? That is precisely what co-founder of Aijalon.org, Kacey Henley had the opportunity to do. Notice what was said.
Can you describe your first experience with Schizophrenia?
“Sure, well my first actual experience that I can now trace back as to relating to my diagnosis was about ten years ago while I was in my early 20’s. I recall being able to “hear” people’s whispers about me. Another situation I remember experiencing early on, prior to me really knowing anything might be going wrong mentally was when around that same time period I had an “episode” searching through my hair gel in Walmart for tracking devices.
So that one can realistically understand what a person experiencing a “psychotic break” is going through, can you describe your experience with this?
“I’ve described it like this to my friends, it’s like driving up to a stop light and you clearly see that the light is red. No one in the world can tell you otherwise, they cannot convince you the light is green. Now imagine that framework, but you are living a nightmare. Invisible enemies, sense of impending doom, the television talking to you, delivering the most personal and devastating statements, just to name a few things. That’s what I guess a psychotic break, if you will, looks like for me personally”.
How often do you experience symptoms? Daily, weekly, monthly, yearly?
“Like an inspiration of mine, Elyn Saks says of herself, my symptoms are on a scale. The major psychotic breaks type of symptoms are only historically every few years, and I suppose for different reasons. Other symptoms like what people term, ideas-of-reference, I experience off and on, sometimes daily for a short period of time.”
You are currently, and have been for some time, a student. How does your academic pursuits effect your mental health condition?
“It truly gives me a sense of purpose, and a feeling of I am moving forward and experiencing personal growth. When I excel in a subject or overall grades, it helps me reaffirm to myself I am more than a label of a mental illness. I hope this sets an example for my three children.”
Have you ever been hospitalized or received treatment against your will? If so, can you describe the events and what you were going through?
“Yes I have. Twice. The first time granted, was absolutely completely necessary and lasted a little under 6 months and resulted in me being placed on a conservator-ship. I won’t get into the second time I was hospitalized against my will. I really don’t like to get into this topic too much publicly, but let’s just say it was an absolute hell and mind shattering during that time.”
How did you initially feel when diagnosed with Schizophrenia?
“At first I felt bit of relief. There was possibly a name for what I was experiencing. Maybe some things were only in my head. However that quickly turned into denial, and a quest to prove I do not have the condition of paranoid schizophrenia.”
As a father of three and a husband, can you explain your thoughts on how your diagnosis of schizophrenia has effected your family life?
“There definitely has been the good and bad, beautiful and ugly. I do not deserve the children and wife that I have. My children and wife Arlene have put up with me so far. My wife’s support in particular has been paramount. I think they really love their old man.”
You are a founding partner and President of AiJalon.org, as your mission and cause gains more and more “grass-roots” traction what do you want the world to know about mental illness and schizophrenia?
“I simply would like the world to know that having a mental illness is not a crime nor a taboo. Real people having real needs of support, inclusion, and a chance to reach their real potential are the talking points we need to be discussing when having a dialogue about mental illness. Those of us with a mental health concern, do not need to be cuddled and walked around like on “egg shells” but perhaps a little understanding. After all, it’s understanding or purposeful contemplation that usually allows a person to have a change in perception. As a whole, we need a change in how we perceive mental illness. That is my message to the world on the subject of mental illness.”