i am so super grateful for another brave person sharing a story that deals with mental illness as i imagine this has to be something that makes you feel cut off from society at large, because there is often stigma attached and just lack of information for those on the outside as it were. Especially with a word like schizophrenia that so many of us had heavily incorrect perceptions of when growing up.
So thank you Hilary for agreeing to give us a glimpse into this aspect of your life:
How to sum up living with a mental illness… it’s been my reality all my life. Only it took me a while to figure out that that is what it was. An illness; not just the way she was. The person closest to me. My mother. She brought me into this world and was an ever-present source of love and care. She was also the person who birthed in me a deep-seated fear that would take decades to unseat… that I would become just like her.
Sure, many people grow up with fears of becoming their parents. Only my fear was of becoming mentally ill. That I would be unable (or unwilling) to discern the normal way things were done. Fitting in began to take on a deeper meaning from early on in my life. I was terrified of standing out, of being different. Because I knew my mom was different, and on some level I knew that it wasn’t normal.
Part of the stigma around mental illness, I think, comes with the difficulty of distinguishing the person from the illness. You see, a broken bone is obvious, a disease that changes your body can be easily identified. But when the illness becomes so closely intertwined with the personality, the way a person behaves and how they see the world… it becomes a whole other ball game.
At least when a person’s body is sick they know that they have a problem. But when the problem is with your mind, to the point that you won’t believe there is a problem with you, then suddenly the people trying to treat you become a hostile force and they are the problem. So I spent much of my life trying to distinguish my mother as apart from her illness. Loving her, but trying to dissociate myself from any embarrassing behaviour, though the idiosyncrasies that resulted from the different wiring of her mind were very much a part of who she was.
Mental illness affects the whole family. We all reacted in our own ways to her behaviour. Whether we tried to exert control over the little things, compensating for her disordered mind and way of doing things by expecting certain kinds of order where we could insist on it. Or whether we hid away from it, as I often did, trying to avoid letting the weirdness spill over into other parts of my life. At some point, the older we got, the children began to act more like the other parent, treating our mother like the child who needed to be reined in and kept under control. It left for a very confusing family dynamic.
We never spoke about mom’s condition. I think I was at least halfway through my teens when I finally plucked up the courage to ask my dad what was wrong with her, finally got a label to attach to a lifetime of strange behaviour – schizophrenia. It would take more time after that before I did the research and finally understood what that meant.
Life with mom was always unpredictable. Or maybe it became predictable in its own different way. There were her particular strange idiosyncrasies. And then there were certain recurring delusions and paranoias. Her mind really struggled to stay on topic, and she would switch topics multiple times mid-sentence. (I’ve learned that there is a name for this too.) She had a lack of mental filter that made it hard to have the kind of mother daughter relationship I’d read about or seen on the television.
I couldn’t confide in her, because I never knew who would be the next person she’d talk to, whether neighbour, friend or telesales person, and they would get to hear the full story (and a mixed-up version of it) of anything I’d share with her. And then there were the relapses… the attempts to run away, to climb over the neighbour’s barbed wire fence, the memorable occasion where we woke up to find all the valuables in the house piled up in the middle of the house to be given away because we “have too much stuff!” … and then the absences that followed as she was admitted to facilities for treatment.
And of course, it progressed and got worse as she got older. We had learnt by this stage how much any disruption to the normal routine, good or bad, could trigger a relapse; whether the time I moved out on my own or planning for a family holiday. At the same time she really suffered with being confined to her small circles where we knew she was safe. I considered it God’s grace that mom was well enough to travel to my city for my wedding, and for the time my parents spent that last Christmas holiday all together with our family.
With the decline it became harder and harder to find mom under the layers of paranoia and delusion. When she died it was actually a bit of a relief, with my sibling sharing at her funeral that in many ways it seemed as if she had in reality died to us a few years before.
Looking back we try to remember the good about her. Her very generous heart and her kind spirit. Her constant presence in our childhood and her love and care for her family. And sometimes we also smile as we remember some of the silly things she did. My youngest child reminds us of her all the time. There will always be a part of me that wishes I could have done more with her, been there more for her. But another part of me knows that carving out a more normal life for myself somewhere else was part coping mechanism and part necessary for figuring out who I was apart from that identity.
Living with a serious mental illness is like living in a long-time war situation. Constantly on guard. Constantly dealing with damage control. And no one gets out of it without scars and a kind of PTSD. Only these scars are invisible to most of the world around you. And yet somehow we manage to carve out a normal life in spite of it. To build relationships. To love. To live. To thrive.
It has taken me many years to come to terms with how mental illness has shaped who I am, but by God’s grace he uses even these things to bring about some kind of beauty. I’ve seen the darkness it brings. And I’ve seen the light, like the fresh perspective of someone who sees life through an utterly unique point of view. I’ve seen the mentally ill languishing alone in state institutions.And I’ve seen a family struggling under the pain of a loved one who sees them as the enemy and knows which words will hurt the most. And I’ve seen the pain and struggle of the person in the centre of it all, who couldn’t clearly process the world she was living in and the restrictions placed upon her as a result.
I’m so grateful for every person who saw past the mental illness to love and care for the person inside. I think perhaps another aspect of the stigma attached to mental illness is the realisation (conscious or not) that mental illness affects a whole community. But it needs a community to thrive and grow through it.