The path behind me stretches so far I can hardly see where it started, way back up there, somewhere, shielded by the clouds and the grey, I now find myself in the sunshine looking back at the mountain I have been scaling. I never thought I’d be here and yet there’s still so much to say, the end is still not in sight, I’m not at the bottom of the mountain, just a ridge further down. The peak is conquered but sea-level’s a lifetime away yet.
The bus pulls up and I grip the card in my pocket, my hand clamy and warm, I cover it with my palm as the que jostles and shoves past, bags and buggies bump against my legs and I’m caught in the tide, propelled up the step. I pull out the card quickly, sweaty hand over the purple-give-away-cardholder, I look down, don’t-make-eye-contact, I try to swipe-and-walk. It never works. Bleeeeep. The red light flashes.
Lets see that the driver growls. A woman sighs behind me as the que starts to grow. I feel my ears burn. He peers at the photo of me on the card and then back up at me. It’s an old photo, I don’t have a fringe in it. I can see a spot on his unshaven chin and dark circles under his arms spreading across the bus company shirt. My stomach churns.
hmmm any other ID, drivers licence? Silently I pull out a library card.
OK he grunts and I hurry to the back of the bus. Holding in scalding tears, my heart racing, blood boiling, RAGING. The ‘Freedom Pass’ they call it. Some ‘freedom’ this is. I’d like to see them try this freedom on for size. The anger bursts out of me as Chronic Pain and the TMS strikes with a vengeance.
The scene changes. Another day, I’m sitting around a table, lunch has been eaten and the table’s heavy with empty satisfaction and stuffed faces smile all around, friends and family catching up. A good space. A safe space. Someone is discussing the cost of living;
well, that would be OK if it wasn’t for the price of the bus nowadays. A chorus of agreement. Wanting to join in, be included and give my two cents I say well at least that’s not an issue for me, I’ve got a freedom pass. I grin. To make light of it. Silence falls so loud I can hear my heart thud.
All heads swivle in my direction, all eyes bulge. What?! Why? You LUCKY LUCKY THING! FREE you mean FREE you get to go on the bus for FREE?! That’s SO unfair! INCREDIBLE! In this room I am loved. I know I am and yet even here I see that equality, equal-opportunities and reasonable adjustments are phrases not really understood. My heart sinks and tears pour out of my soul. But I don’t let them see. I don’t want them to know how much this hurts. How this conversation took place over two years ago and it’s still etched into my skin. I don’t want them to know how I walked out of that room and sobbed in the lane outside that house and again TMS stalks me.
I have shared these stories as for me they get to the heart of what it is to live with an invisible condition like epilepsy. I look OK I look FINE, so when people are reminded that perhaps I do not conform to their idea of ‘fine’ they are shocked, surprised, uncertain and mistrustful. I want so much to spread awareness and understanding. I know that bus drivers aren’t horrible people, I know they have a job to do, I know I am loved by my friends. I know that they just do not realise what it is like to have epilepsy. My therapist told me that this description I once gave her helped her to understand the psychology of epilepsy better than anything else so I thought I’d share it here with the hope that it helps other people to understand better too.
Dear Mr. Bus Driver,
Yes I look young and pretty (if I say so myself!) yes, today I am on my own, yes I have all my limbs, I am walking, talking and carrying a bag. Yes, I have a freedom pass. It’s not fake and this is why. I have epilepsy. But epilepsy does not have me. This is one of the many ways it affects my life:
Every day I walk down the street, I’m sure you do too, lane, road whatever you want to call it. I walk. The surface is uneven, there are loose paving stones and crumbled tarmac, there might be a pebble or a clump of grass. I’m normally busy and on my way to somewhere. I hurry. Sometimes I might trip on that loose stone, pebble or lump of grass or even just over my own two feet. I’m sure you trip sometimes too. It doesn’t have to be a big fall, just a tiny stumble. A milliseconds trip. Everyone trip’s up right? I know they do.
credit photo by Jack Hood on flicker
The difference for me, when I trip in the street is that I have been told I have epilepsy. (I say I’ve been told as I don’t remember so I have to trust others -but that’s another story) I have been told this and so when I trip I immediately think; did I just trip, like anyone would or was that an absence seizure? Was that ‘normal’ or was that ‘abnormal’ was that epilepsy? I DO NOT KNOW. This question is repeated a billion times a day for me: Did I drop that normally? Or was it epilepsy? Have I just forgotten something as everyone does? Or is that epilepsy? If it is epilepsy WHAT SHALL I DO? Lie down, tell someone? Call someone? Take some drugs? And then even worse- perhaps it’s not epilepsy at all. Perhaps its ‘normal’ and I’m just the biggest fake of all. Perhaps nothing is epilepsy, perhaps the Doctors lied and I’m just a hypochondriac?! I can’t know. To me these are terrifying questions. If I happen to be for example on a station platform, on a road, in a pool, my life and others can depend on my answer. Take a moment and imagine that.
This the reality of the psychological impact of epilepsy. This is why I have a freedom pass. Why I would not wish this ‘freedom’ on anyone else. I don’t write this for sympathy I write it because it is true and because I hope it might help others to better understand what invisible health conditions might be like.
Things That people with Chronic Health Conditions DO want to hear