We are in the middle of Schizophrenia Awareness Week which is May 17-23 this year. Last year I was aware of it... This year my goal was to participate and help raise schizophrenia awareness. To help bring it out of the shadows and into the light so that we can all talk about it openly and as honestly as possible. I sometimes refer to schizophrenia as the "S" word because it still feels like it is taboo to talk about it. Within my home it is spoken fairly regularly and with a frankness that I consider to be very important. It along with ADHD, anxiety, menopause, addiction and medications are a part of our daily lives. Even more so than grocery shopping or paying the bills as these things are not daily occurrences or reminders of the struggle that we all find ourselves.
Despite my intentions I found myself backing off from schizophrenia this week. I have done very little on my Facebook page or even Twitter. I thought that I would be in there like a wet shirt... Instead I have done the opposite.
Some words that come to mind when I think about schizophrenia: different, conundrum, contradiction, nonsensical and limbo. Not mental illness, mental health, stigma or even awareness.
There is so much that I want to say yet so little. I commented to my daughter today that I haven't been doing much lately for Schizophrenia Awareness Week and she replied that it made sense since I live it everyday. Smart cookie! She's right.
I'm not going to discuss schizophrenia from my son's point of view because in all honesty schizophrenia means nothing to him, in my opinion. It's word that I use and his treatment team uses to tell the difference between things that he experiences that we don't. That's it, just a word. I know that there is always discussion about changing it's name which would probably benefit some. I can't say that it would change my life or even my son's life if they did.
I had a little chuckle with myself today as I considered the word contradiction and the fact that I have done the opposite this week to what I thought I was going to do. I myself have been the contradiction that I think schizophrenia is. Not surprising as I live schizophrenia as much as my son does. In some ways I think I live it more... That is not to downplay what my son experiences. We experience it differently.
His world gets so small that he can't see past schizophrenia and his own mind/thoughts. He gets lost in there. I don't... I see all to clearly what it is giving him and what it is taking away. What it gives and takes away from us all.
So here we are and I'm thinking what are we celebrating? What is one week or one day? If I compare it to say my birthday or better yet my clean birthday. The last time I used crack (Yes I used to use crack) was August 17, 2002. I have a friend that doesn't think that I should hold on to that date as my clean date as I used other drugs after the fact. Still I celebrate it. I don't really celebrate it on August 17th. I celebrate it every day that I wake up because every day is another day that I have gone without using it and I'm so thankful for that.
I'm finding it hard to celebrate Schizophrenia Awareness Week because everyday is Schizophrenia Awareness Week in my world. Like my birthday or my clean-day, it comes around once a year and it is nice to have a calendar highlight it... But it's just another day or week.
What is schizophrenia? Good question. For several years I researched and tried to understand the science behind it. I still do but not with same gusto that I used to. I still try to understand neurotransmitters and other terms as they relate to medications however where it came from or why my son has been blessed with it has really become a mood point. Don't get me wrong, I care very deeply about the science and I really hope that one day, soon, we have more answers. We need more answers.
I don't read a lot of the articles in-depth anymore. Sometimes I get pissed off reading them. I think aren't we past that yet? Blaming parenting styles or trying to draw connections between cat litter or fevers... Yes I get the need for it. Still it pisses me off. Why? One reason is this. I see it with a lot of parents and caregivers where they feel guilty that they may have done something that has caused their loved one to be ill with this disorder. Like any of us need another reason to feel guilty. I can assure you we don't. I choose not to read these articles too much anymore because I don't feel guilty that my son has schizophrenia or ADHD or ODD or even addiction. I have made my share of mistakes in the past and I will continue to make them. I'm ok with that. I'm doing the best that I can, now, today.
I'm not going to put much emphasis on positive symptoms as I think they are more easily understood. As I watch my son experience voices and hallucinations, I tend to take them in stride fairly easily. It's the negative symptoms that are so hard to treat, so hard to explain and so hard to watch. I can tell my son that what he is seeing, I can't see and that he is hallucinating and he can except that. He can even understand that that is the word schizophrenia. It's a lot harder to explain to him that when he doesn't feel like doing anything and has no interest in life that that is also the word schizophrenia. He can't see what it is taking away and I can't show it to him. I can point out to him that he is doing certain things like leaving the stove on or not seeing something that is two feet away from him like the ashtray ;) and he sees it for a second or a minute. Then he doesn't see it. So how can he understand that which he cannot see?
Because it's Schizophrenia Awareness Week I have been seeing much more on social media about the stats on violence... I find this one hard because I myself want to push these stats. I want the world to know that not everyone who experiences mental illness or schizophrenia is going to... well you get my point. At the same time I think: Why are we all pushing for things like Community Treatment Orders (Canada) or Assisted Outpatient Treatment Orders (USA) and even forced treatment? Well because the reality is that untreated, psychosis can be life threatening. I find it even harder now that I am aware of what can happen with my own son when he becomes psychotic. If there was no need for concern than we wouldn't need mental illness advocates or mental health courts, etc. Sorry I know that may not set will with some and I apologize for that.
Of all the words that I can currently think of I think limbo is perhaps the one that holds the most meaning for me right now. Schizophrenia has put not only my son but me in limbo. There doesn't seem to be any moving forward. Time has been going by. A week, a month, a year... We make progress and we take a couple of steps back. I believe in hope and I hold on to it. However the conundrum and contradiction that schizophrenia is, keeps us from having a solid footing on the future.
Right now I feel stuck. Not in a bad way and not in a good way either. Just stuck. I can only imagine how stuck my son feels or if he can even realize that we are stuck. His world is schizophrenia. My world is schizophrenia. I got a phone call yesterday about a job offer. I turned it down stating that my son has a mental illness and he isn't doing very well at the moment. I ask myself when that will change? What if it doesn't? I can't stay home forever. The thought of leaving him home alone if I don't have to makes it hard to breathe. I know that caregivers do it. Lots of them because they have no choice and I have always said that they have my respect as I don't know how they manage. They are stronger then they know, I'm sure.
Of all that I wanted to say... I find myself, right now, with nothing else to say ;) My son is waiting for me to file his nails. I asked him to wait until I was done writing this. That was a bit ago. He probably doesn't even realize how long it's been. Yes limbo...
Mom
BarbieBF
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