My Story... a bit long, but then I love to hear
myself type!
Today is January 3,
2009 and as I said, I can't believe it's been over a year since I've
updated the site. 2008 was fast and furious. As those involved with
Behavioral Heath know, the last year brought many changes. For me, it
has been a year of experiences I will treasure and memories I hope will
stay with me for a lifetime.
In late August of 2007,
I took a job with SOON; Survivors On Our owN. It was more than a change
in jobs, it was a change that lead me to a new understanding of the
importance of peer run services. Today, many things have changed but
then life has a way of happening while we are busy making other plans...
in my case, life had more in store than I could have hoped for! What
follows is my story as it was in late August of 2007.
Originally posted,
August 2007
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. 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”. Stay strong 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. :-)
Update - January 2009
So you've read this
far, if I may, I'd like to share a bit more about what has happened in
the last year. SOON merged with another center called SELFF and
became S.T.A.R.; Stand Together And Recover. We have three centers,
one each in Mesa, Avondale, and Central Phoenix. I am currently the
I.T. Manager for all three centers.
I have also had the
privilege of serving on the Magellan of Arizona Governance Board.
Frustrated with the slow progress of transformation, I chose not to
apply for a second term on that Board. However, doors have opened
since then. I am currently serving on the Boards of Arizona Foundation
for Behavioral Health and Arizona Behavioral Health Corporation;
I am also a member of the Arizona Department of Health Stigma
Reduction Committee.
All that being said, what makes me smile is that I am in love. Shortly
after starting at SOON, I met a woman that astounded me with her
fierce passion for the rights of the Mentally Ill balanced by a
delicate but equally intense sense of humor. She was the Director of
The Fun Bunch; a program dedicated to providing educational, cultural,
and recreational activities for service recipients in Maricopa County.
We have had the opportunity to attend the Eric Gilbertson Advocacy
Institute and hope to educate and
advocate at the upcoming Arizona State Legislative session.
I love the New Year! It's a
time to celebrate our successes, forgive our shortfalls,
and look forward to a future of possibilities. Much like recovery, it is
the hope that drives us to make tomorrow better than today, not just
for ourselves, but for all.
Thanks for taking the time to read this.
Matt
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