Family Members – Allies or Adversaries?

I felt overcome by emotions as I watched my step-son perform in his sixth grade concert recently.  I watched him lip-synching most of the songs and, frankly, not in accord with the music.  I watched him steal a few looks at the girl he likes.  He looked out at my wife and started smiling.  He would shake his head when he saw her look at the girl he has a crush on.  We knew he was not really paying attention and the teacher knew the same.  An awful thought crept into my head – what if his distraction led to a visit with a psychiatrist.  Would we be told that his inability to focus was a sign of a brain disease?  Would we be told he is among the six million kids that “have” ADHD?  Would we be told he needs medication?  Would his inattention be pathologized?

Does our culture allow for further exploration that reveals who these six million kids really are?  This exploration into my step-son would show a truly wonderful kid that could not possibly be more focused on the weekends when he dominates his soccer matches or when he takes scraps from our garage and turns them into works of art.

As I sat there I thought just how much people love their kids.  This may seem like a strange revelation at 41 years of age, but life has been anything but typical for me.  I watched parents move around with their video cameras.  I took part in standing ovations for music that reminded me a lot of the noise my cat makes when I am late feeding her.  Thanks to my wonderful step-children, I now have an understanding of parental love.  If someone were to ask me what I would do to help my kids have a happy life my answer would be – the same as the other parents in that room last night – anything.

This realization made me feel guilt about some strong feelings I have been having.  A few months ago Connecticut’s General Assembly had a hearing on mental health in response to the Sandy Hook tragedy.  The team at Advocacy Unlimited and many other activists and advocates spent roughly 13 hours at the hearing.  We testified and watched many others do the same in front of politicians and every major CT media outlet. I watched so many family members testify about how their loved ones were suffering and needed increased access to services – including forced treatment. They came from every walk of life to demand more services in the public and private mental health system.

I sat filled with anger for hours, listening to testimony that damaged our position.  The family members’ eyes filled with tears as they detailed the perceived troubles of their loved ones.  I realized last night that my anger was misplaced.  It should not have been directed at the parents.  The parents believed what they were told and what society believes – that certain emotional experiences can be signs of disease that needs to be treated like other medical illnesses.  The reality is that those parents I watched testify want exactly what I want – for our children to be happy.

I think there is little doubt that family members testifying and advocating for forced treatment and increased access to services has been effective (Intensive Outpatient Commitment – IOC – exists in 44 states and counting).  I now believe that in order to truly influence policy and spur significant change in the mental health system it is important that family members see that the problem is the services not access to them.  It was not long ago that I said in a meeting that I do not care what family members want.  I said that I advocate for changes in a system that “treats” adults.  Paul Acker, a fellow CT advocate, said to me that he disagreed with me and said the family members need to hear our voice.  He was right about hearing our voice and beyond that I forgot on a personal level how influential our families can be.  It was, after all, my mother that basically broke me out of a psychiatric hospital and got me in a place that saved my life.  It was my wife, at a time when all looked hopeless, that would not let me quit.  I was naïve to ignore the power of loved ones.  We can never accept the adoption of the “parental perspective” as the authority on our experiences.  That said, it behooves us to influence this voice that is so often powerful and sought out.

I think the way to shift the focus of loved ones is to show methods, outside of the medical model, that lead people from suffering towards a meaningful life of their choice.  I have made a conscious decision to always talk about techniques I believe work and not just criticize status quo “treatment methods.”  I got my first forum to test my new strategy when I was asked to speak in front of the Sandy Hook Commission last month.  I wanted to detail what it took for me to be able to reshape my life in hopes that they would recommend that services be improved and not just expanded.  I talked about my experience in a psychiatric hospital and years of just psych drugs and identifying as my diagnosis.  I told them that during my hospitalization I did nothing all day.  I was not talked to or given any ways to deal with my experience.  I presume that the days of nothingness were designed to allow time for drugs to “kick in.”  Once a day we lined up chairs to wait to see a psychiatrist.  In my first five minute meeting with the doctor, I was told I had a lot wrong with me and would need a drug cocktail for the rest of my life.

I told the Commission about the life disparity and the evils of the medical model in general.  But then, unlike previous speeches, I talked about what worked for me.  After my awful stay in the psych hospital I ended up in a rehab facility run by people who self-identify as “in recovery.”  I told the Commission that I was taught to be accountable for my actions and to take ownership of my life.  The counselors in the rehab told me that I was not broken and I could shape much of my time in this world.  For the first time in my life – I listened.  I listened because the people talking to me were living proof that a meaningful life beyond my current experience was possible.  In the years since rehab, I have listened to many people that have gone through experiences comparable to mine.  I have learned the impact nutrition has on my emotional wellbeing.  I have learned the value of being present; yoga and meditation have become staples in my life.  I have learned the value of facing my fears.  I also learned to sit with discomfort – as my friend Greg Benson has articulated on this site, I changed my relationship with suffering.  I have structured my life around deliberately incorporating these values and principles into my daily routine.

In the weeks since that testimony, I have been asked to speak in many venues.  People on the Commission asked to meet with me privately.  Opening up about what works for me has resulted in my being asked to speak in new circles.  I have been approached by many family members in these forums.  Some of them have said to me that what works for me would not work for their loved ones.  They say I was not “sick” like them.

I share with them the struggles I have had throughout my life, beginning in early childhood, with emotional distress.  I have been given three diagnoses and have been on countless psych drugs.  In my thirties, I became completely addicted to things that allowed me to escape myself.  I hurt people and publicly embarrassed my loved ones.  I suffered two strokes and have had open heart surgery.   I know suffering on so many levels.  At times in my life, suicidal thoughts were the only thing that gave me peace.  I speak honestly about my experiences with the hope that the family members I meet won’t so quickly distinguish my past experience as fundamentally different from their loved one’s current situation.

I will point out flaws in the system.  I will become emotional when I see the medical model rearing its ugly head.  I will also speak out on the mechanisms that humans have used to deal with troubling experiences for hundreds of years; things like yoga, meditation, community, spirituality and nutrition.  I was happy to see the blogs about nutrition.  I think it is really important to talk about how we can deal with distress in healthy and impactful ways.  I hope that in time the outspoken family members in Connecticut and beyond will see the value of holistic approaches and demand better from the system – not more of the same.

We can better encourage parents who are currently screaming for more access to the status quo – to be angry that the status quo is not good enough and needs to do better than just prescribing drugs.  We also owe it to our communities to channel the voices of parents who have minor children dealing with emotional distress, who feel that all the system offers children is diagnoses and drugs.