Trying to Reach Out ...

by Janine

The honest to God truth is that I’m afraid to reach out. I can come up with this reason or that excuse but the truth is I’m just afraid. That’s why this is so hard to do. I’m just afraid because, in the past, it’s always come back to about three different things … my feelings have been belittled or I’m accused of living in the past or I’ve been humoured. In most ways its all been swept aside. I expect these reactions from everyone. So why reach out when it will only make me feel more stupid and more of a nuisance to others? But I know that what was written in Part 1 of The Iceberg article is true. I know because, in spite of being somewhat upset about something else to begin with, I had an abrupt and rather strong emotional reaction to those words. I was balling my eyes out and kept repeating to myself “I don’t like this”. I don’t know why I kept reading. I had to stop reading it several times. I got so upset because I knew it was true and there on the page in front of me was a complete validation of all that I have felt since I was four years old. All that I have wanted to and been trying to resolve since that time and haven’t been able to. Suddenly all that pain wasn’t just a memory any more. I felt it again for the first time in many years … and it hurt.

Even now, I’m having to force myself to write this. I keep wanting to close it down and just forget about it again. Sweep it aside. I’ve always been aware of what my problems are but getting others, especially my parents, to acknowledge and/or help me deal with them … lets say that it is in the extreme range of unlikely to ever happen. What happened when I was a child is past history to them. They don’t at all see the point to digging up the past and would say that I am “living in the past” or that I just need to “get over it”. They don’t understand the distinction between living in the past and being stuck in a loop due to an unresolved trauma. I’ve been living in this loop for 41 years now and I keep trying to escape it but each time I think I’ve finally done so the loop snaps back like a rubber band.

I was born with Spina Bifida Lypomyelomeningocele. About five weeks after I was born I had my first surgery to put the end of my spinal cord inside my body where it was supposed to be … I don’t have a coccyx. I had some nerve damage to my bowel and back when I was born I wasn’t expected to walk either. I’ve had a bit of surgery to improve my walking but I have always walked and, in the past few years, I have finally been learning to manage my bowel. The worst of the nerve damage was to my bladder. They called it neurogenic. It just didn’t work. So I wore nappies until I was about four years old. That was when I went into hospital for a procedure to create an illeal conduit (urinary diversion) and stoma over which I wear a bag to collect the urine that constantly dribbles from the stoma.

Mum says that before that surgery I was the “apple” of my Fathers eye. She says that when I had the surgery I went from being a happy child to a sad child overnight. Mostly I just have a vague sense of different feelings from that time. I don’t remember many specifics but I do remember suddenly not being good enough for Dad anymore and I remember that Mum and Dad argued about me a lot for about a year and half after that surgery. I like to say that they were so busy worrying about me that they forgot about me. I don’t think that they coped with my medical problems back then and, with one exception, they never sought any help with coping. Emotionally and mentally they did it all on their own. The exception was the one time that Mum took me to see the Queensland Ostomy Association in Brisbane. I only vaguely remember going there. We only went there once because, according to Mum, she was put off by the woman at reception who said to her “sometimes our kind even marry each other” and “they change each others bags”.

I can’t count the number of times when I was growing up that Dad said to me “you’re being stupid”. He said this any time I tried to talk to him about how I felt about things. An even bigger number to count is the number of times I heard, from Mum and Dad, “you’re not trying hard enough” and somewhere along the way Dad developed a habit of blaming me for just about everything, even things I never did. He never asked if I did a thing. Blaming me became automatic. I was the “trouble” child. Even when I was in my late thirties he was still blaming me for things I never did. I was in my early forties before I finally got the courage up to ask him to at least find out if I did anything wrong before telling me off for it.

Reading part one of the Iceberg article was like reading my life story. It really hurt, all over again. Some of the example comments were, word for word, things that I have often said to myself. I felt so badly about myself in my early twenties that twice I tried to kill myself. Weak attempts. For some reason I just couldn’t go through with it. I’m not very good at suicide which I guess is a good thing to be bad at but I did it because, at the time, I honestly believed that it would be the best thing for my family … to take the trouble-maker out of the equation and then they could all just get on with their lives and be much happier for it. For most of my life I believed that I had ruined my parents lives.

In my late twenties Mum found out that, when I had my surgery when I was four, Dad had gotten information from then and when I was born confused and that he had spent all those years waiting for me to die and suddenly a lot of things made sense. Mum straigtened him out on the subject and told him that I wasn’t going to die. Things between Dad and I have improved slowly since then but the damage was already done. The damage was done when I was four years old and abruptly went from being “daddys girl” to being broken and never good enough. These things were never said exactly but it’s how I was treated. He couldn’t cope with my problems and ran away from me emotionally.

I am a very strong person but not because I am strong. It’s because I’ve simply had to be strong. I am angry with Mum at the moment because she protects Dad from life now because he has a bad heart but, although she over-protected me when I was a child, she has always expected me to “just deal” with whatever issue I had at any given moment, even when I was still a small child. She always taught me to face my problems head on and, frankly, some of my problems have been way bigger than Dads. Being unable to have even one baby because of all my life saving surgery when I was a child was hard but straight on top of that came three of the four different types of ovarian cancer. They took everything out … uterus, ovaries etc. and left me with surgical menopause. Then straight after that came the discovery of an arachnoid cyst in the thoracic region of my spine.

I’ve been to hell and back more than I think is fair and yet I can still say I’ve had a good life but I want to be better now … emotionally and mentally that is. I think I’ve earned it and I’ve spent the years since my thirty fifth birthday trying to change all the bad programming I got as a child. I’ve come a long way already … on my own … but I want to be and do better than I am. I’ve finally learnt that I am "good enough" and I don’t deserve to punish myself or feel guilty for things that were never my fault to begin with but it’s hard to change thought patterns and sometimes I slide backwards. I have always had a very bad temper and have always been accused of being an angry person. It took me a long time to realise that I wasn’t angry. I was just very frustrated. So I have “exploded” a lot in my life, each time the pressure of things gets too much and I can’t cope anymore. I like to throw things and kick walls to release the pressure. Realising that I was frustrated and not angry has helped a lot. I don’t feel the need to explode quite so much anymore. It’s been a slow process but I have been changing my bad temper.

In all this the one thing that has been running through my head for days now is “why didn’t my parents protect me” when I was a small child who had been through such traumatic life changing event. It wasn’t my fault that they couldn’t cope and why does Mum protect Dad now when she never protected me. They were both too busy trying to cope and protect themselves from the emotional fallout of my medical problems but they forgot about the one person who needed it the most … me. And they would both be shocked to learn that while I might trust them with my life, I don’t trust them with my heart.

I’m also learning that it’s okay to be angry with my parents. I don’t want to stay angry with them because they are actually good parents, in spite of all of this but the anger has always been there and it’s never been addressed. I’ve always felt guilty for feeling angry with them for not being there for me after that surgery and how they treated me for years afterwards. They never did understand what I was going through. Mum even admitted that to me a few years ago. I was really surprised by this admission and, for once, I didn’t shrug it aside and say “it doesn’t matter”. In fact, I couldn’t think of what to say to it except that it was “better late than never” that they finally realised that they didn’t understand what I was going through back then.

Anyway, there is much, much more that I could find to write but this will do for now. I think it’s already way too long.

Thank you for your article. It hurts lots right now but, in the long run, I know it will help me.

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Aug 09, 2012
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Changing belief systems
by: Angie Carter

Boy! you certainly have been through a lot! I can see where you have HAD to be strong just in order to survive. Kudos to you!
It is very difficult to "change" or override the belief systems that are laid down and formulated in our minds from the things that our parents tell us and how they react to us when we are children. Those are burned into our brains.
I have had to go through my own process of meeting my inner children and work through and "redo" certain belief systems. It does take a lot of work and dedication, but the rewards are worth it.
The things that tumble around in our mind from our childhoods can be extremely painful, but when I work with my inner child I listen to that part of myself and it's feelings and then try to provide facts to debunk those falsehoods and then encourage and praise that part of myself whenever I show evidence that those thoughts are false.
Having the supports of likeminded people has been vital to my healing and recovery. I hope you have some similar resources available where you are. Good luck with your journey! Angie Carter

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