I have a confession to make. I don’t want to say it out loud because then I have to admit that there is something going on. But I know fine well that I need to learn not to be so proud so here we are.
You know when I say that those silent periods (like the last couple of weeks) are because I’m tired or busy or have nothing to say? Well, that’s only half true. I have nothing to say because my brain slows right down into a fog and I can’t remember words. Looking for them is like rummaging through a mental toolbox having no idea what you’re looking for but picking out every tool anyway and hoping you’ll recognise it when you see it. At times like that it’s difficult remembering to respond in conversation never mind trying to write anything down.
You know when I ask you to repeat yourself a million times and you get really annoyed? I’m not daydreaming, I’m just struggling to hear you. Your voice might be the wrong pitch or you might not be looking at me when you speak or it might be that I can’t cope with the background noise. I’m slowly learning to pick things out by lip reading.
You know when I do that weird thing of always walking on your left? I know it seems a bit OCD and I try to be subtle about it but I can’t always hear you out of my left ear. I know you get annoyed at me and think that I’m being a pain but please understand that it is stressful for me too. Believe it or not, these things often make me want to cry.
You know when we arrange to meet up and I’m often late? I know it’s frustrating but I really try. Often it takes all morning for me to wake up. I get nervous going out, especially since I have to navigate a few flights of stairs and some sharp corners just to get to the door of my closey. And if my head is being slow I can forget my phone or my purse or my keys or whether I’ve locked the door or not.
Crossing busy roads stresses me out. Traffic noise is difficult. Bright (and even not so bright) light can be difficult. Public transport makes me nervous. So I’m sorry. I am trying to work out how to get around some of these things, please bear with me. And if I do a no show or cancel at the last minute, trust me when I say that I hate doing that. If I say I’ll be somewhere I will really really try. I’ve fallen on my face a few times trying to get ready and out of the door, trying to convince myself that I’ll be ok in a minute.
I know it’s frustrating for you that I can be so unreliable sometimes when I say I’m fine but I try to keep the anxiety and the muddled words and the drunken staggering and sometimes vomiting behind closed doors.
The truth is, I don’t want you to worry It’s not dangerous, just unpredictable. It’s nothing to worry about, I just need your patience (but preferably not your pity).
Sometimes the world revolves around me. At least it looks that way. Sometimes I’m just out of sync with what I’m seeing, like a film shot by someone with unsteady hands, and I need to hold onto things to be sure where they are. That’s why I can be so irritatingly clumsy. Noise disorientates me when I’m like that so you see why I don’t like roads.
Sometimes it’s more like being on the Waltzers at the fair after eating too much candyfloss. Except that I don’t get the fun ride. Or the candyfloss. And I never know if it will be moments or hours until it stops.
Often it’s just that giddiness like when you step off the Teacups and can’t quite walk straight. Except your vision never quite settles. I was never big on funfairs anyway.
Originally, the assumption was that I was over tired and I continued to tell myself that for some time. I prefer to tell others that I’m just a little distracted. But even if you believe it and I want to believe it, all that really says is that we’ve never really got past the I’m oks.
My confession is not that I am not well. That much is pretty evident. My confession is that I am struggling with it.
Dizziness means I can’t read for essays. Brain fog makes it hard to write. Stairs, busy roads, public transport, looking like I’m drunk in public all make me worried. Grogginess wreaks havoc with my sleeping patterns. Having to spend half my time asking people to repeat themselves then resigning myself to attempting to lip read is annoying all round. Not knowing why really bugs me.
The doctors think it may be a thing called menieres. I never like French anyway. Not that the doctors are particularly bothered about finding out but that’s just how it is. I think that the statistics say that one in a thousand people have this thing – which isn’t one in a million but it’ll do. We’ll see what the experts say.
Whatever it is that is wrong, they can have it back. I don’t want it.
The dizziness, particularly the spinning kind, panics me and I worry more and more about finding myself alone in the street with a serious case of the Stotters and no idea how to get home. It has happened before but thankfully a friend happened to be passing by and gave me a hand. I hate the tightness in my brain when it happens too.
I’m struggling to adapt. I hate not being able to read but I’ve discovered LibriVox and I have a supply of good podcasts which I listen to quietly in my good ear as I wait for the world to stand still again. I’m learning to appreciate other people reading to me and as an added bonus, it helps drown out the ringing a little.
But I want my hearing back. I want the headaches to go away. I want to be able to walk up and down stairs with my hands full and no rising sense of panic following on my heels. I want to be able to stand up and sit down like a yo-yo in our hymn sandwich services. I want to be able to tip my head up and down to pray and to sip from the communion cups. I want to be able to turn the lamp off and watch the firelight dancing on the walls. I want to walk down the street like I’m sober every time.
I’m struggling to accept and to adapt. This is my confession. I need your patience and your help but please keep any panic or pity to yourself.
On the bright side, sometimes I get to see the world how Van Gogh painted it. And even better, I am learning the reality of an old hymn I didn’t used to like, Leaning on the Everlasting Arms. I hate the helplessness and the uncertainty and having to rely on others to do basic tasks but isn’t it just the same as all of our spiritual states? If we’re honest, we’re all helpless, confused, not knowing up from down, and needing a strong, steady arm to lean on , to guide us, to steady us from falling. This is just the physical version of the spiritual reality.
I’m sorry if this reads like a pity party. I have been concealing it for a long time but it is getting more and more difficult. I know that some of my friends are finding it frustrating and I feel that I owe them a fuller explanation. Don’t be upset, it’s just how things are now. All it is is a physical version of the spiritual reality that lies within so many of us. If it teaches me dependence then I will learn to be glad of it.
In the meantime, please be patient with me and in return, I’ll do my best to laugh and not cry when you tease me about my ditsyness. All you need to know for now is that this is the truth behind my I’m okays.