My Story

by Lisa Cameron

“Mental illness leaves a huge legacy,
not just for the person suffering it but for those around them.”
~ Lysette Anthony

 

Many years ago while watching my favorite TV show, Star Trek, half way through the episode “This Side of Paradise” the picture froze for about thirty seconds then went to a commercial.  When the show came back on the last half of another episode, “The Alternative Factor,” was on.  What happened?  I was confused and angry, I was already involved in the first story and I wanted to see it to the end.  It was a struggle to accept and watch the last half of the second story. 

Ironically in the spring of 2004, my life, as I knew it, came to a standstill and I was temporarily frozen in time.  When things settled a bit I suddenly was living a completely different life.  So what happened?  I was confused and angry, I was already involved in my first life and I wanted to see it to the end.  It was a struggle to accept my new life. 

Scott, then seventeen, was a happy straight “A” honor student in his junior year in high school.  He was living his passion to become a great physicist at JPL.  He had many friends and his teachers loved him.  Scott had a girlfriend whom he adored.  He was always happy and found humor in everything, he could make anyone laugh, but I think what he enjoyed most was making himself laugh.  Things were normal as expected. 

I’m not sure exactly the onset but I started noticing subtle changes in Scott’s behavior that seemed odd.  He became more serious and cantankerous. His hygiene deteriorated and his room was messy.  My first thought response was adolescence and he will grow out of it.  As the days and weeks passed, Scott became more difficult, he would shut himself into his room for hours at a time and had many sleepless nights – his excuse was homework. 

During the months of April and May, several events took place that I believe triggered Scott’s first psychotic break.  His cousin, Christopher, was a Marine, killed April 17, 2004 in Anbar Province, Iraq.  His death, and attending the funeral, was very hard on us all but Scott lay quiet with bursts of uncontrolled silliness.  He was studying Communism in his history class and understood how it worked.  As with everything he learned, in his excitement he talked about it to his peers.  Soon he was being called a Nazi and Communist.  One day, while walking home from school, someone drove by throwing a bottle of liquid at him shouting “You are a Nazi!”  During class Scott saw a student deliberately break a computer, and, being a good student, he reported it.  Later that day during P.E., this student spit in Scott’s shoe, slapped him across his chest with a cable and started fighting with him.  The only logical thing to do is defend himself by fighting back.  This fight caused them both a three day suspension from school which horrified Scott.  I was called in to talk to the Principle who graciously reassured me that she, the staff and teachers all support Scott and went as far as requesting to reverse his suspension which couldn’t be done.  A week after Scott returned, the school was vandalized and swastikas were painted throughout campus on every building.  At this point I can only imagine what went through his head. 

At home Scott raced downstairs to show me his physics work and all I saw was a page full of doodling.  I suppose the look of confusion on my face was obvious, he became so upset and screamed out “they told me I’m not worth it and I don’t deserve to live!” and ran back up to his room crying.  For a moment I was stuck in shock wondering who in the hell would say this to my son.  When I asked, he could not say who it was but referred to them as “they.” 

Scott and his girlfriend planned to go to the prom together but a couple of days prior, she suddenly broke up with him.  He was devastated but still wanted to go to hang out with his friends, he did have his tux and I felt so sorry for him so I let him go.  I did not realize the mayhem this would create when I went to pick him up.  He did not meet me out front of the hotel as promised and I waited almost an hour before going in.  The prom area was packed with hundreds of people making it difficult to find Scott but he spotted me.  He ran up to me, caught in some frenzy, demanding to stay.  It took a lot of coaxing but I finally got him out of there.  Once out, he was totally silent in a daze. 

After the prom Scott’s behavior nose-dived into irrational thinking, sweating, shivering, angry, sad, dazed, confused…catatonic.  I still believed it was a bad case of adolescence and made an appointment with the doctor because the excessive change in Scott’s behavior was just not right.  The good doctor prescribed a relaxant medication to soothe his diagnosis of “a little anxiety.”  Dummy me, I thought everything was going to be okay now. 

It is now late May and the weather is very warm.  With about two more weeks of school Scott began wearing all black; black hat, black shirt, black pants, black socks, black shoes, black gloves and a heavy black overcoat.  He would walk home wearing all these things, drenched in sweat. 

While at work, early in the afternoon, I got a call from the school.  Of course there is something wrong, why else would they call.  I was told my son wrote a letter about suicide and gave it to his friend who handed it to the office.  I left work in a panic and drove twenty-five minutes to find my son waiting in silence in the nurses office.  No one at the school told me he needed help in any way and I already took him to the doctor and he’s on medication to help the anxiety.  Other than that, what else could be wrong? 

The next morning Scott was ready to go to school.  I didn’t want him to go, but he insisted.  I called in sick at work and went to school with him, hoping to find answers and figure out what’s wrong and what to do.  He went to class and I stayed in the office, talking to his teachers and nurse.  Later that morning I saw Scott pacing in the quad area talking to himself.  One of the teachers brought him into the office and I took him home.  From this point he was in a very deep depression, and I guess I was too.  In tears I called the school and asked to speak to any one of his teachers because I had no clue what to do.  Finally a teacher gave me some direction, but it so vague.  He said take him to the hospital in the valley, not here, they will know what to do.  That seemed so silly to me, why there?  Reluctantly I took him and, after a series of questions, Scott was admitted. 

We waited in ER for almost eight hours, still not knowing what’s going on, no one said anything.  Finally we were escorted to an elevator, separate from the main area. My life changing event occurred at this moment when I read “mental ward” on the sign.  What!!!!  My son is not crazy!  I was furious, how dare they assume my son is crazy. I refused to believe that my son is mentally ill. 

During the summer of 2004, Scott was hospitalized three times for seven days, each a horrifying experience. 

June  –

I was convinced Scott does not belong in the mental ward and was ready to take him home.  On that first day Scott told me he wants to stay because he needs to find out what is happening to him.  Within hours he was diagnosed with bipolar disorder and was administered Lithium and two other drugs which caused his already weak mind and body to plummet further. 

When he came home I determined there must be something else wrong with him.  I made an appointment with the neurologist who found nothing, I had the good doctor order an MRI that showed nothing.  I enrolled him in a neuro feedback program to help him control his thinking patterns which didn’t help, and I started him in therapy. 

Scott’s therapist told me she thinks he does not have bipolar, which I sighed with relief, but that didn’t last when she said schizophrenia.  She told me about his audio and visual hallucinations and delusions that are key symptoms of the disease.  My first thought – why haven’t I been told this while he was in the hospital?  This makes sense, he heard those voices the day he showed me his Physics work.  The therapist suggested I get a second opinion.

July –

Scott was administered yet more prescription pills on top of what he already was taking.  He became more defiant and angry toward me which I didn’t understand why.  I learned that he attempted suicide while my daughter and I were in San Francisco for a weekend in May.  The doctor began criticizing me, as a mother, and then going as far as blaming me for causing Scott’s illness.  I was already very weak, exhausted, frightened, confused, lost and now suddenly I’m the cause of all this.  I requested a second opinion on the diagnosis and the doctor refused, he reassured me his diagnosis was correct and I don’t know what I’m talking about. 

When out of the hospital, Scott wanted to live in a tent on the beach by himself.  I would not allow that but I organized a seven day work program at a friend’s hostel up the coast.  That would give him the freedom of being away but at the same time he would have some supervision while working around the property.  It was Saturday and the drive was 3 1/2 hours, I stayed the night then headed home the next day.  Monday morning, while at work, I got a call from the manager at the hostel.  She said Scott is having major issues and I need to come and get him right away.  When I got there he was dysfunctional and incoherent but well enough to understand he had to leave.  The seven hour drive to pick him up and take him home was excruciating. 

Scott had a short-lived part time job at a local fast food restaurant, he tried so hard to do a good job.  One night, after an argument with an employee who sprayed Windex over food, Scott stormed out.  Later his manager severely scolded him on the phone.  This caused uncontrollable crying while clinging tightly onto his sister for about thirty minutes. 

August –

Scott’s condition worsened with each hospitalization and this time I was determined to get my son away from these quacks who call themselves doctors and therapists.  I demanded a second opinion and instructed the doctor to talk to the therapist that Scott has been seeing now for three months.   After his conversation with her, the head of the Psych ward examined Scott and re-diagnosed him with Schizophrenia.  At this point Scott was taking at least eight different medications.  When we walked out I swore neither of us will step foot in this hospital again, I fired that doctor and began my search for a new doctor whom I found, he turned out to be a life saver and gradually weaned Scott off all but two of the drugs. 

The following months were difficult and overwhelming.  All the medications Scott was taking turned him into a zombie like creature with no sign of life, he could barely stay awake.

 This was Scott’s senior year.  He had received D’s in all his classes from last spring and was so embarrassed to go back to that school.  I enrolled him in a new school which he attended for about three weeks until he was no longer wanted there. 

In the next day or so, while I was at work, Scott managed to get himself out of bed, get dressed (in regular clothes) and walked into the office of his high school. He talked to the principle and counselors and asked if he could come back.  With open arms they welcomed and supported him through his entire senior year. 

I enrolled Scott in a two-year program at the Aftercare research facility at UCLA.  There he was re-diagnosed with Schizoaffective Disorder.  They started him on bi-monthly injections that helped relieve the side-effects.  They gave him the confidence and guidance he needed.  They taught him skills to cope with his illness that he still uses today.  They were his miracle.

 Through countless hours researching mental illness on the internet I found NAMI and immediately signed up for the Family-to-Family class.  NAMI was my miracle.  I learned more about mental illness than I ever imagined.  I learned skills how to cope and help my son better.  I learned to change my perspective about my new lifestyle.

 Recovery is a very long process. 

In the last ten years Scott transformed from a helpless young man in a mentally psychotic state into a college student earning his degree in Physics.  His grades were low but he graduated high school with the biggest smile on his face.  He attended, and received three AA degrees and one AS degree at the local community college.  His GPA has been on a steady rise.  Currently he is attending a California State University and in 2015 he will earn a Bachelor of Science in Physics and Computer Science.  His future plans are to attend graduate school while working at JPL.

 In the last ten years I have had my challenges emotionally and financially.  Today I am emotionally stable knowing that my son is doing incredibly well.  Financially it’s sometimes a struggle as I paid out and lost so much while my son was very ill and I don’t have what I used to have, but it helped my son.  I am an advocate for mental health, I teach the Family-to-Family class and the Provider Education class.  I have become a state trainer for Provider Education, I manage the NAMI Ventura FaceBook page and I built the NAMI Ventura County website.  My future goals are to continue writing my memoirs in my blog and help other NAMI organizations become a household name through the web.

To learn more about my journey, please visit my blog at www.schizophreniawithlove.com.