Someone just reminded me of this post and I thought I should share it here. At year 6, I still struggle. But I fight back, hard. It is my hope that you can take something away from this and find your own ‘fight’. After all, we’ll never get these moments back. So get up and make the best of it. My life has been hijacked, make no mistake. But, its up to you to decide just how much of your life can be stolen… Today, try to find a piece of your life to take back. Even if its small moments like these, which is often all I have. But I’m grateful none-the-less.
Much love for you all…
Facebook: 10 June 2014 – 8:05am
Shame and the ‘Make Sense!’ game:
I’ve spoke on how I hid from my family. I tried my hardest to look as normal as I could, I tried my hardest to hide as much if the intense pain as I could. I tried hard not to fail in front of my Son and tried every day to keep the darkness of what’s happened from overshadowing my family’s life. Usually that meant hiding so I could take it all on myself. Nearly every system in my body has issues, my body wasn’t the only thing affected. I had far more shame over my mental challenges than any other symptom/issue.
Perceptually, the world happens too fast. I cannot process things/people/voices/conversations like I once did. Although now I’m learning to work round it better and have certainly experienced at least some recovery on this as well. I wasn’t able to think/post like this a year ago, although real-time conversations are still very challenging for me.
Often my Son would ask me questions. Simple questions like any other kid would. I was entirey unable to respond in a timely manner (if at all) and I have a very hard time getting my brain to think of the things I want it to, when I want it to – and certainly can’t always switch towhat someone else wants me to think about.
I can usually picture in my head what I want to say, but I can’t describe or say it. It has been a source of incredible frustration and I hope to describe my mental challenges in better detail later. I have experienced some improvements lately, but it can be very disheartening for me to say the least.
Recently I have been forced to be more open with my Son. I kept this from him entirely until very recently. But he needs to understand somewhat so he never thinks its him or his fault if I get frustrated with my brain. He knows I can’t always say/think what I want or do simple tasks at times. So we came up with a game.
Introducing… the ‘Make Sense Game’!!
This morning is a great example.
Usually asking me a question (doesn’t matter what or how simple), esp if its not something I’m already thinking about, causes my brain to enter into that electrical mist that’s unpleasant (to say the least) and it becomes incredibly frustrating. But my Son is so sweet and gentle, he patiently waits as I try my damndest to get thru the electrical storm to answer him. Usually, my answers don’t make sense to anyone, let alone a child.
This morning he asked what dryer lint is. I picture it in my head and also have a pseudo-picture of what my answer is. This morning I was able to respond in a way that actually made sense and I got a point! I’m at 1 now…
We started this game a few weeks ago and as frustrating as it is to talk sometimes, I think it helps. I still don’t like failing in front of my Son, and I suspect I never will. But I am so thankful to have a Son who is so gentle and understanding. We don’t play this game to make light or make fun of me or my inabilities in any way. Instead its a light hearted bit of fun that actually encourages me to try harder every day, and makes me feel less ‘defective’ and thereby a tinge less shameful about my brain too I suppose.
Last week was a better week, one day my high score was 10.5 – there was a time where I made only some sense so I got a half point. But I find now that I’m distracted by my desire to get a ‘point’ and to try and beat 10.5
I am somewhat less frustrated by the electrical storms and I try without fear of failing or shame. Or at least not as much. I just want to beat my high score of 10.5
I know that some of you reading were hit by this drug class too and likely can identify with the cognitive issues caused by this poison. Please, lose the shame. I’m still working on it myself, every day. I have the hardest time accepting the mental challenges I now have. It makes me feel defective and useless as a Man. But I’m working on it, and every day I try to do something that makes me feel strong.
I know this might only make sense to me (and I don’t earn a point for that). But I hope that by being more open, honest and transparent in my struggles and fears I can inspire thought and change in you as well.
Your Brother in Fight,