A parent's perspective
Reprinted from "Families" issue of Visions Journal, 2004, 2(3), pp. 18-19
All parents have a special bond with their children. They conceive and then nurture them, helping them grow toward adulthood. This bond strengthens over the years as both the parents and the children develop dreams, hopes and aspirations for the future. It also strengthens as adversity or disagreements test the relationship.
Unfortunately, life does not always unfold as one expects or wishes. Psychosis can steal children away from their parents, creating a hurt that — because of the bond between parent and child — is deeper than any other hurt possible. Psychosis hurtles individuals and families into a whole different world — from normalcy to total devastation almost overnight. There is no pain that can compare to the pain of seeing your fragile, scared teenager experiencing a horror over which they have no control.
This is my perspective after two and a half years of dealing with an illness that changed my life, even though I was not the one experiencing the illness. In our case, the illness came on with a 'psychotic episode,' a term to which I was totally oblivious prior to the event. It is a term, however, which I was to become very familiar with — as I struggled to help my daughter as she experienced the psychosis, and as I did everything I could to understand what this chemical imbalance in the brain was all about.
I soon found out how resilient we have to be as life throws these curve balls at us. We have to adapt to changing circumstances. We have to carry on with the mundane tasks of life. We have to change our existing philosophies, and sometimes even change our friends as we find they are unable or unwilling to understand and support us when mental illness enters the picture.
As a single father (widowed), I was devastated when my daughter became ill. "WHY ME?" was my first response, soon followed by anger, frustration, disappointment and a host of other negative emotions. It didn't take long however to realize that this was not about me, it was about an illness that was scaring my innocent sixteen year-old daughter to death. My emotions quickly changed to sadness and empathy with a tremendous need to do something to help.
I was very fortunate that my daughter was accepted into the South Fraser Early Psychosis Intervention (EPI) Program. This EPI program taught me that "psychosis is treatable and recovery is to be expected." It also taught me that I was an integral part of the recovery process; this made so much sense to me. The professionals would spend an hour or two each month with my daughter; I would spend a hundred times that as I tried to keep life as normal as possible and help her to understand what was happening. I read books, took courses, searched the internet and became totally involved in learning as much as I could about my daughter's illness. The more I learned, the more I came to understand how much the medical profession had advanced over recent years. Medications, knowledge, support structures and attitudes have all improved tremendously.
Unfortunately, the more I learned, the more I came to understand how difficult it is to deal with mental illness in society. Past stigma, media hype, incorrect representations and lack of understanding make people nervous or fearful. In some cases, people are downright ignorant and hurtful because they just don't 'get it.' They either don't understand the illness — and don't even realize that they don't understand — or they feel that they know, even better than the parent, just what the answers are.
My daughter had one math teacher who told her that she had a poor work ethic and that this was detracting from her self-esteem. Now, equating 'self-esteem' with 'work ethic' is possibly not too outrageous a concept for someone coaching competitive sports, but it is totally off-base when dealing with a young person struggling with psychosis. The 'poor work ethic' was actually her inability to figure out, learn new math concepts and remember old ones due to the slow recovery of 'executive skills' affected by the illness.
It's not the teacher's fault though. Specific training in handling brain illnesses is not part of the average teacher's background. However, the experience was still a tremendous slap in the face for my daughter who was working her hardest, struggling every day to stay healthy and to reintegrate into society. Sad as it may seem, incidents like this are not necessarily limited to people outside the immediate family — for example, it might be a sibling who refuses to accept the illness and suggests to the person that the doctors have 'convinced' them they are sick. This kind of thing does not help the person learn recovery strategies or to fully trust anyone. Incidents like the two mentioned above are not just insensitive and hurtful, they show how much education is needed.
As my daughter and I continue to work on her recovery with the experts in the EPI program, I find that I occasionally experience circumstances where I can introduce people to the modern world of brain illnesses and help to reduce the stigma long associated with mental illness. I am just one person, however, and we need each and every person who does 'get it,' to help those who don't. Society needs to understand and be compassionate in its handling of people with brain disease, just as it does with other more socially acceptable diseases. We need to adjust sensitivities, attitudes and actions in line with modern medical progress and with more up-to-date knowledge about brain diseases.
About the author
Mike is from White Rock and is actively involved with the South Fraser Early Psychosis Intervention program (EPI) parent group known as PSPOPS, or Peer Support for parents of Psychosis Sufferers