Lived experience

I've been meaning to write about tattoos, but an assignment I'm doing on the difference between grief, sadness and depression and a lecture I went to this morning have me thinking. The idea of the lecture was to give student nurses an insight into mental illness that we may not otherwise get, a lived experience story from the point of view of a 'consumer' and that of a carer. Jayne Newling came to speak with us. She lost one son to mental illness when he took his own life and both of her other sons have lived with mental illness and now consider themselves recovered. Jane has a journalist background and wrote a book called Missing Christopher that looks brilliant. I have it and plan on reading as soon as study is over for the semester.

I'm going to cry when I read the book. I know I am because I cried during the talk today. I wasn't doing ladylike eye-dabbing, my body was vibrating with silent sobs and I was worried that snot would drip down my face coz I didn't want to disturb the room by blowing my nose. There were a lot of tears in the room so I didn't feel terrible, but it wasn't great.

Part of the reason it was so difficult for me to listen to was that I saw it from both sides. I am a mother to two boys and I'm deeply sure that my biggest role in life is to protect my boys from harm, and give them the tools to deal with the bad times when they come along. There is a history of mental illness in their family (not only me!) which increases the likelihood of them suffering from mental illness and the death of a child, is every parents worst nightmare. If you are a parent reading this there is every chance you will get a lump in your throat just reading this, let alone having someone tell you the details of their child's suicide.

Then there is the other side: I was a child with mental illness. I don't remember a time when I didn't at least toy with ideas of my own death, and by 10 (yep, ten years old) I had not just thought about taking my own life, I had a very concrete plan. I was too little to be able to have much agency, but the one lethal thing I had access too was heights. At age 10 my father was living in a 7th story apartment and I would go out on to the balcony and try and work out if I would definitely die if I jumped off. I thought I probably would but I didn't know how to get a definitive answer - if I asked someone they might see/guess my plan and remove access. I thought adults could pretty much read my mind. The time I remember getting very close to going through with it was summer, the window was open, my brother was asleep but I was awake and unhappy. I climbed from my bunk to the window and sat in the gaping window. One leg hung down inside the room and the other was hugged to my body. My head was under the level of the open window, my scrawny little bottom fit comfortably on the flat of the sill, half in and half out. I remember so clearly being desperate to end my life, believing that the world's population was already too big (remember this is around '83 and we had just come out of fears about peak oil etc) and that we could just fix that with all the people who didn't want to be alive being able to die. Euthanasia.

The big question is what stopped me, what are protective factors for a 10 year old? For me there were two things: fear of failure and preemptive guilt over the pain I would cause my mother. The horror of having to face my family after failing at suicide made me sick with anxiety (and still does) and the thought of my mother living without a child of hers was too sad (and still is).

The rest of my childhood is a dysthymic haze. There was anxiety, bullying, perfectionism, guilt, isolation and then some things that brought joy - connection to friends and family and anytime I managed a sense of self-efficacy (oh how little things have changed for me!). My next episode of serious suicidality was at 16/17, then again at 21, then 26/27 (that one was bad and lasted over a year), 28 (when I got my first diagnosis). Then things were up and down, with bouts of premenstrual dysphoric disorder until I was postnatally depressed at 33 and then depressed again at 37. By 42, last year, I ended up only feeling safe in hospital. Now I am in remission, or as the current best-practice term has it, recovery. I'm mostly happy, I deal with everyday stressors but don't really feel recovered, I feel like the meds I take and the self care I do keep me well for the moment, but if something comes along that messes with what is important for me I could get sick again. Anytime something crashes into my feelings of self-efficacy or the connection I have with those close to me, I can't promise my brain won't slide off into the crazy again.

So what is this history lesson in aid of? Jayne Newling and her son Nic strongly feel that talking about mental illness, including experiences of illness will help people get more and better help, younger, and this will save lives. Nic worked for the Black Dog Institute and has recently set up a group called the Champions. There is no way to know how much easier my life might have been if I had been diagnosed and given good help when I was a kid. Imagine if I wasn't totally terrified of telling people that I hated my life so much I wanted to end it. Maybe I did and they thought it was just a strange kid-thing? I now wish I could have told my loving and supportive parents. Admittedly, they were busy with their divorce and new lives and I didn't want to be a hassle. Yep, I was 10 and thought telling my parents I was suicidal would be an unnecessary burden for them. I don't want any other child to feel that, and I don't want any other parent to live with the guilt that my mother has lived with, since she's known how depressed I was and that she couldn't do anything to help.

In my own way, at a personal level, I have been doing the same kind of work as The Champions - sharing bits of my story and creating a community of like minded people who have lived experience or 'loved one experience' where 'R U OK' is an everyday question and where people feel safe and supported when they admit that they really are not OK  (I like to call this group my 'friends'). If I can normalize this within my own little sphere of influence then just maybe it can spread. I want to end this by thanking my near and dear ones; for coming with me, for letting me out you, for outing me and for always having my back.

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