Perception. Perception is connecting what you see, hear, smell, feel, taste with what you know and expect. It is something that happens underneath conscious awareness. It traps me every time in a space where I do not belong.
Look at me and what I am depends on who is looking. My asthma nurse sees the tiny dip after the peak, the slight irregularity on a graph most people couldn’t interpret with the quick glance she gives it. I used to have a regular paramedic who always took the call when my address came up because his wife had my kind of asthma and sometimes he arrived to provide manual ventilation and cart me off to hospital whilst other times the asthma attack had come and gone and he stayed to double check my stats, telling me if anyone else had showed up they’d think I was faking it, but he’s seen me on the floor not breathing so he takes the call when he can because you never know.
My rheumatologist sees not just the way my fingers and wrists bend back when I talk using my hands, he also sees the slight shifts, the twinges of pain when bones slip out of place and clunk back in. He sees the invisible suffocating fatigue, the toll severe chronic pain takes and understands the undercurrents that flow underneath my skin.
I have surrounded myself with people who “get it”. People who have seen the good and the bad, who have picked me up off floors, have helped relocate joints, have set-up a nebulizer with shaking hands because I was barely breathing and they knew every second mattered. The ones who have tiptoed around in a dark as night house, who has seen my scream in agony because whispers are too loud to bear and watched me have seizures that knock multiple joints out of place and then helped put me back together again after. I look at their eyes and I see myself reflected in pools of empathy. My people. The handful who will offer me an arm to lean on without a word or a thought on my very best days.
Today I had an optician’s appointment. I answered questions in short paragraphs. Always incomplete answers. Just the fact. Just the relevant details. Mostly I sat in silence, unable to answer the simplest of questions. Does your condition affect your eyes? Yes and no. I can write a book about how it has and hasn’t affected my eyes. Am I Schrodinger’s cat? No, not quite.
I couldn’t provide a complete medical history. It would take half an hour and this was a ten minute appointment. I couldn’t talk about my daughter, too much complexity there. Do I work? Yes and no. The more questions, the murkier the water. I started to get tense and ramble and had to stop myself. Silly OCD. Stop. Three deep breaths. Back to someone else’s reality.
I don’t fit most people’s expectations. I am a wheelchair user, but I can walk. I am an asthmatic, but my normal lung capacity is excellent. I don’t look sick, but I really am. I was told again that I seem to cope very well with my condition. That I seem to be positive and happy.
I smiled The Smile. I think about the time I carried on a normal gossipy girly conversation with a friend for almost half an hour whilst I was sitting on my bathroom floor slitting my wrists. I have never shared the agony in my life, where is the fun in that? (I have since learned not to go it totally alone, see paragraph on “my people” above, otherwise I would be dead, I cannot live this life without any support).
For everyone else, I save the good bits. I share the positive, the good days, the good hours, the best moments. I leave and close the door when the wind changes direction. I certainly do not trek into town for an optician’s appointment on anything other than a good morning.
I wish I had the power to communicate how it feels to put that smile on my face and graciously accept the intended compliment. I don’t just speak an entirely different language, I live in a different world and my reality is so far removed that it would take days of explaining to try to bridge the gap. The ten minute appointment is over and I leave feeling tired. This little trip out is going to cost me dearly.
This was my very best morning this week. I used it all up in under 2 hours. Exhausted and in a mountain of pain, I could barely sit upright by the time we got home. I couldn’t work or read or do anything. I could not concentrate at all. I went to bed and slept for 2 hours. The price for those 2 hours was giving up my whole day to pain, fatigue and a mental fog thicker than treacle.
It is depressing, trying to squeeze a life into what little gaps there are between bad and really bad days, but I do not wake up in the morning, thinking about the mirage I see reflected in strangers’ eyes. I do not need the world to understand me.
I come home and my daughter gives me a hug so big we both end up tangled on the floor. “My ankle now hurts”, she says with a frown and gives it a mad jiggle, followed by a pop, “that’s better. How was your day, Mummy?” I realize it’s something she’s learned from me. I jiggle my wrist and wait for the pop and the instant decrease in pain before I answer, “Not too bad, and yours?”
She tells me about friends and food, flying kites with daddy and chasing butterflies with Jade the disabled cat who isn’t very smart but has heart and endless enthusiasm. Chris comes to get us up off the floor, join in the conversation and keeps up a stream of distracting conversation until I lie down, blissfully, finally in bed. It’s been an incredibly long day and it isn’t even 2 p.m. yet.
The cats jump on the bed, my phone beeps with messages from a friend or two and my Kindle finds its way out of the drawer and into my hand and then, mysteriously, out of my hand and into the drawer after I fall asleep holding it.
I am happy. Maybe I am thriving. I certainly have much to be thankful for.
The title, “There’s more to the truth than just the facts” is from Enchantress (The Evermen Saga #1) by James Maxwell published by 47North, 2014.