As he told me that he understood, I knew he didn’t. How could he? Lack of sleep likely doesn’t change his speech, change his thinking, but I’m sure he fully believed he understood. It’s too much work, and a little humiliating, to explain to a person, “No, really, trust me, you don’t get it, and even the parts you think you do get, it’s worse than I’m letting you know”. There are few symptoms that are more elusive to experience and describe than cognitive symptoms, and few body parts less understood than the brain. There is no explanation which can possibly illustrate the challenges of a diseased brain within a fully functioning mind that has arbitrarily surrendered to the exact same short-circuiting that makes legs not move right, heart not beat right, skin receptors not feel right. And in my experience, any attempt to subtly allow others a small glimpse of the struggle, leads to disappointment from the complete insensitivity or indifference to my explanation.
It’s much easier to stay silent.
This was a professional conversation. Similar to other conversations I’ve had with this person many times before, with one exception, this time I struggled to form words. I heard his questions, but the direct answers evaded me, only bits and pieces of a puzzle were within my mental grasp; I could see a piece of information in the distance of my mind, grab a hold of it, but it didn’t fit the other pieces quite right, so I stumbled through my thoughts. Each question is a word problem, each answer is a hurdle and doesn’t make sense. I trip over my own words. I know this because I hear myself. Unlike a person with a severe mental disability, I hear my mild impairment with my own ears; my clumsy attempts to simply spit out an answer. Even I recognize I sound like an idiot, how could he not think the same. And it crosses my mind more than once that my pauses, and my attempts to self-correct, make me sound like my answers aren’t handicapped, they’re lies. And this is only suggested more and more as my fatigued vocal cords wade between high-pitched cracks, and hoarseness. It doesn’t matter why anymore, I’ve come to expect it on days like these. Obviously, he had no idea the depth of trouble I was having. He asks a question and I’m supposed to answer it. But every question took me way too long to process, and then there was the impossibility of finding the correct words combined with producing speech – all of which are the responsibility of a delicate organ gravely taken for granted and given less care than any other part of our bodies.
It’s like I’m living outside of my own body watching the battle.
These conversations with this person almost always involve memory recall. Memory recall is painful, if a brain can hurt mine hurts, as I search the corridors of my mind for information – dark, long hallways of nothingness, and then a mental image like a photograph hangs on the wall of my mind – nope, not enough data, it’s not there either. Momentarily, I’m lost, completely and utterly lost in this subject, in his questions, and desperate to find an answer I recognize, anything familiar. It feels like climbing a sand dune in the desert in complete darkness, “just get to the top, just get to the top”, the answer is there I can almost reach it, as each inch I climb causes me to slip down two. Not to mention this was a stressful topic. Add stress to any of my symptoms and they’re multiplied. I remind myself that today will have to be a “forgive yourself” type of day, lest I allow the hate I feel for this disease and myself at this moment to consume me.
It’s much easier to pretend the problem isn’t a problem at all, and hope nobody notices.
I try to explain this is not a good day to be having this conversation, I’m sleep deprived and my brain isn’t cooperating. I attempt to give excuses for this brain of mine: I had a really long weekend. I’m exhausted. My body and brain are fatigued. Every part of me is screaming sleep, but I don’t want to believe that a long, busy weekend would require such a recovery or else not be able to function normally for a couple of days. Yet, I know this is the truth, I feel it in every symptom that didn’t bother me three days ago.
Don’t acknowledge the struggle and it will pass. Giving an explanation will expose a secret better kept private. Hide the truth.
He understands, he says. I’m sure he’d like to, I know he cares. But maybe if he did understand, he could explain it to me, because I sure don’t understand.
Throw today away. Tomorrow is a new day. Forgive yourself. Forgive yourself. Forgive yourself.