Ataxia, the slow, silent destruction

Wednesday, August 26, 2015

Ataxia, the slow and silent destruction

Fact- Some things will never get easier, but that doesn’t mean that it has to rule my emotions and how I take on each day as it comes with its own set of difficulties.

This morning, I spilled an entire glass of cappuccino all over my wireless keyboard *which was a gift from my Mom and Dad after doing the same thing on my laptop – which amazingly didn’t ruin the entire machine!*…

I was SO upset that I could have actually punched my desk… but I didn’t.

It doesn’t seem like that big of an accident to most folks, but to me it was yet another frustrating reminder that I do in fact have ‪ataxia‬ and that it is affecting my hands and how well I can grip objects.

I live through my hands – as an ‪artist‬, ‪photographer‬ and tactile enthusiast.

Most of us take for granted how often and for what purposes we use our hands all day, every day. For me, it’s a grim reminder that these ataxia ‪‎symptoms‬ will continue to decrease my abilities and that it will continue to increase the limitations that I’m already unwilling to accept.

For those of you whom don’t know me very well or haven’t known me very long – I’m an EXTREMELY patient human being. I don’t mind waiting, and in fact, I find that slow anticipation is often very well worth it in the end. However, I get REALLY angst-ridden by things that limit my abilities, my options, and mess with my creative outlets.

My creativity is a HUGE part of my healing process, and without being able to do all the things I enjoy doing and find healing from doing – – – I get angry. I get sad. I get disappointed and down on myself. Things I cannot control are often the hardest things to ‘deal with’ emotionally. My logic and my emotions are in an immense battle right now about this, and it’s really hard to just “be” with it, or to accept it.

I’m working on it, and there’s only ‘so much’ I can do about any of it. Logically, I know there’s only ‘so much’ I can control, and the rest I have to fight myself internally in order to just ‘accept’… it is NOT easy, but I’m using ALL of my willpower to do my best to.

In life- There’s 90% circumstance, and 10% reaction.

I have to purposely choose to react in a constructive way, otherwise I’m actively being destructive to myself about my situation and my brain damage.

Being optimistic and upbeat takes its toll, and is almost never easy when it comes to things so life-affecting. I do try my very best to keep being positive, but some days I feel like saying “eff it!” and just be angst-ridden and full of despair. I feel like sometimes I just ‘have the right’ to be angry and upset.

I don’t want to end up in a wheelchair and not able to use my hands. I don’t want this brain damage, *ataxia*, or amnesia, but it’s what I’m living with; eventually I’m going to have to just ‘be okay with myself’ and learn how to live with it.

Today isn’t exactly ‘the day’ for acceptance — but maybe one day I’ll learn how to.

I’ve already accepted SO much – that sometimes when MORE stuff comes on top of it all I just feel like breaking down and having thee most epic hissy-fit and pity-party the world has ever saw…. but – I compose myself – sometimes HOURS later – and just roll with the punches life throws at me.

Yes, it’s okay to be upset and angry about things that I’m not ready to fully embrace – but it’s NOT okay for me to beat myself up for things I have no control over. Today I’m realizing this all over again – and it’s a harsh feeling to know there’s only ‘so much’ I can actually control.

It makes me feel small, helpless, and alllllmost hopeless.

BUT – having stated that – I do know that I have to adapt to survive, and eventually I’ll figure out how to do so about all of this. So far, I’ve done a fairly good job at adapting in order to survive what I live with. So far, I should be content with the fact that I’ve done so well, and that I will likely continue to do well to adapt to whatever comes my way.

I have to give myself credit where it is due, and stop attacking myself as if I had something to do with what’s going on. I don’t.

It’s not my fault I was injured, and it’s not in my control how quickly I do or don’t heal. I just have to learn how to not be so damned upset and to truly find a way to anticipate these things. I do anticipate things changing – that’s a give in – but I never expected things to change at the pace they have been, and I think that’s where all the ‘shock’ and ‘angst’ comes into play. I think that’s why it feels extra-harsh.

Now that I realize that, I can more easily adapt and accept things as they’ve now proven to have become. Easier said than done, but I’ll get there.

I have come to embrace my anger and outbursts of disappointment and am learning quickly how to let it all go. To use it as a tool for processing what I’m going through.

It’s tough sometimes to really embrace that there’s huge things in my body that I cannot control, but I’m figuring it all out. I’m learning how to use my emotions constructively instead of allowing them to destroy me and my intentions for myself and my future. That’s why I say “I’m working on it” because it’s a constant battle of my whits and sensibility.

I know logically there’s only ‘so much’ in my control, but emotionally I feel raw almost all of the time. Being honest with myself is a huge blessing, but feeling so intensely kind of trumps my logic sometimes. It’s a balancing act that I’m learning to maneuver through.

There are very few things in my life that I won’t accept graciously, but ataxia just plain sucks… it’s one of those diseases that slowly deteriorates abilities to grasp objects, to stand up and walk without falling, to swallow without choking, etc… eventually, everyone with my type of ataxia winds up in a wheelchair, unable to use their arms & legs correctly, and have a feeding tube so we won’t choke by attempting to swallow.

It’s scary.
It’s not something I’m looking forward to.
Declining into it is something I’m trying VERY hard to fight.
That’s the truth of it. That’s the reality of it.

I am not focusing on what WILL happen, but instead on the here and now. When I DOthink about what WILL happen, I tend to freak the heck out and scare myself – – – which is destructive and not healthy.

Yes, I have to accept that it eventually will occur, but I have to force myself not to borrow tomorrow’s troubles today.

***Thanks for reading! — Until next blog…***


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