Living with memory loss is infuriating. The perception is that people who forget things are a bit docile, but on your third attempt to leave the house, because you've forgotten something, getting back inside and forgetting what item you forgot- I challenge anyone to not feel frustrated.
See my memory loss, which is linked with my hypothyroidism, is a daily struggle. It's not that I forgot we were meeting at 12pm for coffee and now you've texted me I've remembered. It's that the conversation we had about it is missing, it's completely gone. And it's not coming back.
In the past I've had a range of responses to me telling people about my memory loss from supportive to disbelief, and lots in between and I spent a long time feeling guilty because I believed the misconceptions about memory loss that everyone else does. But having lived with this condition for eight years, I've decided that I'm comfortable enough with this part of my health to make some assertations and draw up some boundaries.
1. Memory loss has nothing to do with intelligence.
Now you may be able to still recall the answers to your A Level Law exam, or your GCSE Math test, and I might sometimes forget to wear underwear, but that doesn't make you my intellectual superior. It gives you a huge advantage in one specific kind of academic examination, but spurnng off information isn't a marker of intellect, it's a marker of an individual's ability to memorize things. What about problem solving, interpersonal skills, developing, creating, applying critical thought to situations? Your ability to recite information is one skill that happens to be frightfully over tested in the U.K's educational system.
2. This has nothing to do with how much I care about things.
I didn't forget to call you or see you because I don't care, contrary to popular belief forgetfulness is not connected with apathy. I do care. I do want to do everyday human things. I am not choosing to forget them. If I could choose what I remembered then I wouldn't have memory loss. To prove the point here's a list of things I recently forgot
-A regular feature on my blog. Several weeks running.
-To drink water for three days.
-To take my medication yeaterday. -What day I was travelling to London a few weeks ago.
-To take painkillers for pain from dental surgery, earlier today.
-My middle names, a few months ago.
-My age, a few days before my birthday.
-How to spell 'critique' when writing point number 1.
3. Memory loss is not helped by condecension.
'Ahh, Pip, you'd forget your head if it wasn't screwed on.' Wow,that's not original or helpful. Nor is it helpful when you make a joke out of me forgeting to perform basic tasks. I totally understand that you feel awkward that I'm disabled in this way and you want lighten the mood, but don't make jokes at my expense, especially about my disability/ies because-
4. I not embarrassed by my memory loss.
I spent a long time loathing myself and telling myself how stupid I was and I worked out; that doesn't help. It took years for my to deconstruct the internalised ableism that we're all socialised into. I felt that I 'should' be able to remember where I put things, who I had made arrangements with and why I was stood in the bathroom with a spatula in my hand. But I couldn't. That is a downfall of my body. That is something I just can't do. And that's O.K. None of us are immortal or undamaged. We're all flawed and human and sometimes we have bad breath or colds or longer term problems. And though it might be terribley embarrassing to you that your friend Pip has come to meet you and is wearing odd shoes, I'm not embarrassed to be human and flawed in this way.
5. Accepting memory loss is a process.
Before I started experiencing memory loss, I thought about my worst fears, one of which was growing old and forgetting people and events and achievements. So you could say that everyday I live one of my worst fears, even if just for a moment. Memory loss is terrifying. I can't explain how much humans rely on memory, if I did it wouldn't make sense. Until you experience menory loss yourself it's not something you think about. But needless to say it's a huge thing to have compromised. And losing it or part of it entails grieving, like all grief mine included a serious stage of denial. I revert back to denial sometimes when I'm feeling unable to cope. Denial is my default an it causes certain behaviours: I apologise for the mistakes I make because of my menory far too much still and try fo hide this condition for other people's comfort occassionally, I call my scary memory blanks 'brain farts' to make others feel less awkward. But I'm getting better at counteracting the denial. And each day I don't tell myself off for losing memories is another day in the process of acceptance.
See, I suppose like any other thing, we try to apply logic to our minds and to our memories. But memories aren't always logical. There is no method or reason in what I forget. There's no rule to explain why I can remember that I have to put a wash on but forget to take it out, why I spent four hours annotating entires for an anthology I helped edit but forgot the editor's meeting. A lot of people I interact with who may rely on my abilities get swept up in this whirlpool of unpredictable memory loss. It can cause a lot of hurt feelings because people take things personally. My memory loss isn't something I dreamt up to excuse shitty behaviour towards you. It's not personal when I forget something, it's not even personal that it causes me to lose memories I need to look after myself. The condition, the scary concequences, the frustration, the denile, the anger, they're all just part of existing. We're all flawed and a broken in some way, right?