My Story... a bit long, but then I love to hear myself type!
This page is dedicated to those who have helped me in my journey; most recently Will and Terri who accepted me without question and put in many long hours preparing to perform and the 2007 NAMI AZ Walk (click here for video). To both of them, and to you, I would like to say that you might never know who you've helped or how much of a difference you've made in someone's life with a kind word, a smile or in their case, 3 weeks of rehearsal. You two are the best!
For those who have been recently diagnosed:
If you’re new to this, you may be feeling scared and alone. I’ve been living in this consciousness for a 16 years and sometimes still get scared. What helps me is to trust that I haven’t changed and the world hasn’t changed. What has changed is the way I evaluate my perceptions. Due to my illness, I now have to introduce the uncertainty principle into my decisions; am I feeling this or is it a symptom of my illness. I sometimes reevaluate my place in the world on a minute by minute basis and that can be overwhelming. Friends and family are invaluable, NAMI can help with both.
There’s an entirely new, world wide, community about to be revealed to you. There’s a new language with terms like “coping skills” and “support systems” that always tend to sound dry coming from the psychiatrist (boo, hiss) but are just “psych short-hand” for hobbies, friends and family. There are jobs, awards, and others who need you in this community.
You are still you; your core beliefs are still valid, trust that this is true. You’re not a “Mentally Ill Person”, you’re a person who happens to have an illness; treatable, manageable, and with a unique perspective that is valuable to others. My first step was to separate feelings from symptoms. Give it a try, you might be surprised how entertaining it can be to “outsmart the demons” for lack of a better metaphor.
So, make it through today; healthy and safe. Get back to the basics, know where you are, trust that good exists and most importantly, KNOW you are a significant “work in progress”. Hang in and the rest will work out. That’s what I believe... But be advised; even without my illness, I’d choose to be an eccentric soul. :-)
Have you heard the dreaded words?
Many illnesses are feared; cancer, diabetes, and heart disease just to name a few. However, when it comes to the mind, my experience was that the label of “mentally ill” was a more shameful and embarrassing condemnation of existence than could ever be imagined in any episode of “The Twilight Zone”.
When I heard the words, I felt like the breath had been sucked from my lungs and I would never get it back. I didn’t have cold sweats, I felt parched, my forehead and ears burned with fever, my mouth was dry and my mind raced. I wiggled in my seat and laughed, after all, I was a musician and being eccentric was the best part of the game. In Rock and Roll, “crazy” is a badge of honor. But this was different, I wasn’t on stage, there wasn’t a crowd waiting to see what I might do or say next; it was my wife, “my” psychiatrist (boo, hiss) and what was left of me. This was real life.
Being the inquisitive type, I decided to investigate my illness. I took classes in Psychology. I discovered that schizophrenia was as mysterious to those studying it as my world was to me. I came to the conclusion that if the experts couldn’t agree on causes and treatments then my world was as valid as their opinions. I took refuge in the comfort of confusion, and it worked for almost a decade.
By the end of 1997, it would all come crashing down. I could no longer hide behind the illusion of a struggling artist. I was 36 years old, never had a job that lasted more than nine months, never played a venue larger than 1000 patrons, and did not have a single prospect of seriously pursuing a professional career in the music business. I was a homebody living off the income of my VERY understanding wife’s salary.
I knew our marriage was going to end. She was tired of my defensive quips and wild ramblings; I felt hostile to the feeling that she wanted me to “grow up”. The fact was, I wasn’t immature. I simply couldn’t live in a world that did not make sense to me.
She continued to support and accommodate me for two months after our divorce. When she finally felt the need to move on with her life, I tried to walk out with dignity. The streets were not kind to me; I hounded her for money. It was nine months and many episodes later before my brother “inspired” me to approach the police and ask for protection from those who were “evil”.
After being searched, the police gave me the choice of being hauled in or letting my brother take me to the state hospital for the mentally ill. I was hungry, very scared, and so very tired; I chose to go with my brother to the hospital. Slowly, very slowly, from then on things changed.
I wouldn’t talk to my family for years but the State of Nevada provided food and shelter without obligation while I slowly regained my equilibrium. I tried to work but my symptoms and the affects of my expectations led me to quit. I was referred to vocational rehabilitation, it was 1999.
My case managers were patient, calm, and personable; I liked and trusted them. After a battery of tests and interviews, it was suggested that computer graphics might be an avenue for me to pursue; I began college. I took required courses, made it through the days, and took meds as directed… I resented the latter the most.
Computers were something I could relate to, I did well in the basics and later in advanced courses. Graphics were not my forte, but the possibility of working with ones and zeros intrigued me. I changed my major to programming and achieved an Associate of Applied Science in Information Technology earning my A+ and Network+ certifications along the way.
During that time I was moved into the community, came to terms with my illness, and most importantly rejoined my family. Many things had changed; my family had discovered NAMI and learned much about mental illness. I found medications that calmed my delusions and paranoia, I had developed a confidence in my ability to survive in the real world.
Without having to explain my past actions and decisions, my family welcomed me back to Arizona in 2004. A dear friend provided housing for the transition. I felt safe for the first time in many years.
Since July of 2004, I have had the pleasure of working for several wonderful organizations. I began part-time at Triple R Behavioral Health for two years, moved to NAMI Arizona full time for almost another year and have just recently begun a new endeavor at SOON - Survivors On Our owN. I have accomplished more than I ever thought possible; I have my own apartment, pay my bills, and last year received a grant from Value Options to produce the show “From Darkness to Light”. I have a sense of belonging, purpose, and accomplishment and that’s all I ever really wanted... But be advised; even without my illness, I’d choose to be an eccentric soul. :-)
Thanks for taking the time to read this.
Matt
