Disability’s Rage

I am not always in possession of my own faculties and the resulting anger lashes out, mostly at my husband, whom I hope recognizes it is seldom personal.

I hate myself in these moments – not all of me – just the malfunctioning parts.

It happens when I overexert myself.  Systemic Exertion Intolerance Disease is the new name attributed to ME/CFS, and it is appropriate.  Even my brain suffers from exhaustion.

I have been pushing myself extra hard lately – partly because I am tired of being tired, and partly because I have some things I need to get done – and the result for my brain is that it is losing ground.  I forget things, become confused easily, and cannot process information.

We have been prepping here for a yard sale.  That means making a lot of decisions.  Decisions involve executive functioning:  Is this object redundant? Can I see myself needing it down the road?  How much should I ask for it?  While these may seem like fairly straightforward questions, to the disabled mind they can be taxing.

Mid-afternoon my sister dropped by to help out.  Conversation was difficult as the words just would not come.  She took home a couple of things to try out in her own home.  Later, she texted me money for the items.

This is when it all fell apart.

I have never received money via texting before and my brain, instead of seeing a new learning opportunity, shut down.

“I can’t do this!” I bemoaned to my husband.  “Why would she do that to me?”

He tried to talk me through it.  My brain rebelled further.

“Can’t I just forward the text to you and you do it?”

“You can try, but I don’t think it works that way.”

Money, my panic was telling me, is suspended in space and you better hurry up and grab it!

I tossed my phone aside, laid back and took some deep breaths.  It’s a technique I’ve learned when my muscles get in knots – better to breathe through the stress then try to conquer it.

Awareness of how to proceed floated to the surface.  I deposited the texted money to my account – not the right one – but I had received it, nevertheless.

My husband tried to talk to me about what I can do differently next time, but I hadn’t lost the combative edge yet.  He left me alone.

Sometimes, I just have to grasp the rage by the neck and wrestle it to the ground before it destroys us all.

“I got a lot done today,”  I said aloud.  “And I’m proud of myself for resolving that problem.”

“You’ve done very well,” my husband responded, re-entering the room.

I looked at this man, so brilliant and accomplished, and marvelled that he puts up with the lot of me.

“I am happy, you know,” I tell him, “and excited about where our life is going.” I reach out a hand to him.

“I know you are,” he says taking my hand.  “I know you are.”

Neither of us speaks of concern or worry – it’s all been said before.  What if I never do get better?

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Permission to write, paint, and imagine are the gifts I gave myself when chronic illness hit - a fair exchange: being for doing. Relevance is an attitude. Humour essential.

9 thoughts on “Disability’s Rage

  1. ive been there, sort of. apropos to your post, another blogger just summed up in 15 paragraphs every trouble ive been having for my entire life. https://anonymouslyautistic.net/2016/10/10/world-mental-health-awareness-i-dont-want-awareness-i-want-acceptance/

    the part about spoons is good (and the part most relevant to your post i think.) when i read your posts, i often feel touched by them. they dont make me judge you, and they dont make me pity you. if i had to pick one word to describe the way it does feel, i might pick the word “love.” thats probably too strong a word, but other than that its probably a good fit.

    i always wish you well. i appreciate that youre here. i dont read all your posts– but i have read a handful or two, and i notice when they show in my reader. its probably the sincerity that does it. apart from the sincerity, the resolution of your posts is so high-definition. your life is carried so vividly into your posts, its almost like being there. that, plus the sincerity– i know the word, its “moved.”

    you share so beautifully, even the pain and regrets. and the beauty comes through, all of everything at once, and its as perfect as a story about a person suffering with a painful disease can be. believe it or not, i tend to avoid such personal stories, finding them disturbing or depressing. but for yours i feel only a kinship of some kind. youre stronger than i am– weaknesses and all. i admire your strength, and your weakness, and above all your candor. its not that i dont sympathize, on the contrary! i imagine its extremely difficult. thats why i always wish you the best.

    Liked by 1 person

    1. Bless you! I always felt that if I could inspire, I had purpose. I accept my life – the good and the bad – and writing helps me do that. I follow the blog you shared. Although she has different challenges, much of our experience is shared.


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