My brain is letting me down. It’s ageing. I didn’t agree to this. I didn’t sign up for it.
You can give me laughter lines. I’m happy for my nipples to swing like clock pendulums. You can grey my hair and fuzz my chin, but for the love of all that is holy, please leave my memory alone.
I used to be able to glance at a room and that was enough. I would remember where everything was. I’d already built a map, floor plan, wall plan. I already knew where the sockets were, where the cracks lay, where the carpet didn’t meet the corner properly. It was minimal effort on my part.
But now I have to look. I have to take note. I have to remember.
I used to have a world without diaries and planners. I hate lists. I loathe making them. I loathe looking at them. It wouldn’t matter if it was a year in the future, I used to remember the date and the time. My plans weren’t just for today, they overlaid everything.
The first time I forgot an appointment I was shocked.
“It’s ok. It happens.” I was told. But it didn’t. It hadn’t. It had never happened before in my entire life. I did not forget things.
As time went by I forgot more and more. My memory is still much better than average, but it’s nowhere near what it was. I used to be a sponge. I used to just soak it all up.
Now it feels like my sponge is full. I have to carefully squeeze it so as not to let memories fall out when I let new ones in.
What that has meant for my autism is more effort being put into the already over-laden process of processing.
It’s meant more exhaustion. It’s meant more anxiety as it makes going to new places harder than it once was.
The effect of normal memory deterioration on my life is stark.
Perhaps it was the beginnings of really needing some support.
But at the moment my memory is still good. It still has capacity.
I know this is only the beginnings. I know there will be more. I know that as I age I will lose more and more of one of my biggest crutches.
Take my waist.
Take my teeth.
Take my bladder control.
But please leave me my memory.
Autism and Expectations 
As my mom put it: memory is a basket you get when you are born. Over the years you put all kind of stuff in it. When you get older the basket gets kind of full and new things put in tends to fall out. Old things lay safely on the bottom of the basket… To bad we just can’t “buy” a new basket to fill 😉
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The amount of useless knowledge I have, I’d happily empty it of that!
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You and me both 😀 Why are useless things stucked in there when the things I need to remember slip thru my fingers like sand??
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I’ve been experiencing these things since I turned 30. I’m 36.5. It is disquieting as I’ve relied on my memory, at times taking it for granted. I do write important stuff down for fear of being unprepared. I also have the problem of things going south. I do wish that my brain didn’t remember so many inane things like my 6th grade locker number. I hope autism will get easier as I age, but I am very concerned about menopause. Puberty was a violence filled nightmare.
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At least we can research menopause (although finding the honest facts in amongst the euphemisms can be hard). I share all your fears.
If I could forget the useless stuff and remember the good things, that would free up the space I need!
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Oh, well…
Welcome to my world…
53 and counting, counting now the pages of my increasingly increasing fleet of notebooks, of which I have one everywhere, just to make sure I have planned my every next move’s detail.
And by the end of each year, they will be added to my collection of past time’s notebooks, from where I can pull out panicking, details someone wants, but since their sudden question wasn’t planned in advance, it just confuses me to the point where my honesty is doubted. And there come the looks, and the brows, and my face turns red trying to explain that “I am so sorry, your question confused me Sir/Ma’am, let me look into my notebook to tell you the birth dates for my loved ones…” And the odd looks again, and the suspicion again; “Seriously you don’t know the birth dates of your family?” “No Sir/Ma’am, because you see I speak about six languages and I am able to hear a dissonancy in symphonic orchestra’s performance even if I haven’t heard the piece before, but I am ashamed that yes, if the numbers don’t follow a rhythmical pattern, I can’t remember them…”
So Rhi, don’t worry, just learn to love your notebooks, have some which you like their colour, touch, sound of pages, the way pages hold ink, or whatever makes them part of your amazing individual world.
I’m slowly learning something I found more and more comforting, the fact that it should be “ME and the world” and not “The World and me…”
Because I should be worth it 🙂
And you, and all of us alike, should be.
All the best,
Moshe
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Oh yes, I struggle to remember my husband’s birth date because it’s “wrong”.
Unfortunately my joint issues are making writing with a pen harder. So as much as I adore fancy note pads, I’m probably going to be using them less and relying on my phone more (which isn’t nearly as nice).
Bit by bit we will make adjustments and make it work 🙂
Rhi
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I’m so sorry to read about your joint problems. Mine are still ok, but my back is so bad, that sometimes I have to hold on to things in order to breathe. And the pain meds aren’t making my life better, just less miserable…
I’ve read a previous post of yours, about the three women through which you have to interact with the world, and the sentence “She will waste her life preparing for pretending to live, when she could be spending it living.” really caught my heart.
You know yesterday while shopping I had one of those rare occasions when the shop was quiet, just to find myself forgetting where I am and how am I supposed to “behave”, and started my usually unnoticed flapping of arms inside my sleeves, like a giant (I’m over 6 feet) penguin, while humming my favourite engine like tut-tut-tut “tune”.
It felt good, it felt “me”, for a short time though, until my old nemesis, the shame of being odd again crept in and made me feel awkward and anxious.
And as you so well pointed it out, the time I spend at work and elsewhere outside my comfort zone drains me, leaving me with not much resources to cope with the unexpected matters happening as I get home. And yes, my family is supportive, but we are at the beginning of this seemingly long road, with my children not knowing much about my struggle to cope with every minute of my life…
So just as someone said, will there ever be a time when I can live a whole 24 hours as myself, not as #1 shortly followed by the miserable #3?
I guess though that being able to finally talk about it makes a real difference.
All the best,
Moshe
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Small steps. Yesterday you let yourself be you. It felt good and world did not collapse. The shame is the cage we were taught to live in.
I’m not someone who can walk out into the middle of a crowd and scream, “this is me! Take it or leave it!” But I can gently move the boundaries each day. In ways in comfortable with. I can decide on the things I feel I want to continue with, and the bits that I will faze out.
I almost see it as a slow erosion of this heavy mask I’ve made. If I can just wear it away a bit each day, one day it will be a manageable weight. Maybe by then I’ll have decided to shed it completely. Who knows.
Realisation is the first step. From there you get to decide on your journey and what works best for you.
Thank you for the joint sympathy. I also have a bad back and hips. Are you hypermobile too?
Rhi
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Thank you, well thought. Allowing the cage/mask to erode, deciding what to keep, what to faze out.
I’m sort of allowing myself to be “me” when alone…
Moving my hands and fingers around comforts, as it would have been rocking especially when in bed, which I always refrained myself from, because I didn’t want to be considered, you know, the “r” word…
About hypermobility, it manifests unfortunately in my lower back, where the sacroiliac joints are mobile causing excruciating pain sometimes, all around, including my hips. My ankles were hypermobile until about over 40s but it looks I’m stiffening☺
Thanks again Rhi for allowing me to talk about my own problems in your blog. It is such an enormous relief being able to talk about these matters with someone in these same, interesting shoes, in these confusing and stressing times.
All the best,
Moshe
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