Hi Peeps
In honour of my going away this week, let’s talk about airports and how, for the most part they are utterly unequipped for people with CFS/ME. The lack of consideration is so ingrained that no one even knows it’s happening.
I used to travel for work all the time and I loved it! The 6am flight to London, in my suit, with my briefcase and laptop, with all the other business people (who used to be pretty much the only people that travelled at 6am)…. For whatever reason, I felt like I’d arrived. I felt like this red eye flight with colleagues from all different companies (mostly financial) signalled success. I felt important. I was important enough for my company to need my skills at various sites and they were prepared to pay good money to ferry me about.
Stupid shallow cow.
Now that I am five years into my diagnosis, sitting there waiting for my gate to be announced, writing this week’s blog as a distraction from the noise and light and pain, I feel like such a fool. I cannot think of many things that I dread more than going to Edinburgh Airport….or any major airport for that matter. I am yawning and sore before I even get on the plane and it’s not 11am.
I am not physically disabled enough to need the only assistance that is on offer, at least not yet and I’d prefer to keep it that way. But the distance from the taxi stand, to the bag drop off and through security, only to be greeted by an enforced duty free, with bright fluorescent lights (with no seats anywhere along the way to stop, rest and take my time) is seriously hard. It’s too far. How can I pace myself when the place simply isn’t set up for it?
The brain fog and confusion is sets in, I can’t think straight, I’m staring into space and my eyes won’t focus. And then as I break out into the main lounge area I’m hit with a wall of noise, the only word I can really use to describe it is a ‘clamour’, it physically pushes me backwards. I may not be able to follow my train of thought to finish this article, I may have to wait until I’m on the plane…..
OK, OK, so the guy rabbiting right in my ear has taken himself off somewhere and I have just enough space to think… I grab a coffee and settle down.
So, what I wanted to get down on paper was about how conflicted I am (again) about airport assistance. I would feel embarrassed to use it. I can walk a bit, after all, not too far, but enough. I don’t want people staring at me, being pushed along in a bloody wheelchair just because that is all that’s on offer…. Oh that’s my gate being called and I knew it. It’s furthest away gate from the main part of the airport, it always is….
Another million-mile trek and I’m here, is it really only five minutes later? I feel dizzy and sick. The room is swaying and the ground feels like it’s rolling under my feet. There are travellators for part of the way and that is a small mercy, but when I come home next week, there won’t be any on the way back, despite the fact that we will undoubtedly land at gate 19 or 20.
My ordeal isn’t over, I know that when they call us, they will make us stand for ages down the bottom of the stairs, before letting us onto the plane. As my back, hips, knees and feet throb with pain, I’ll be right on the edge of my endurance with only images of my family and a promise to my favourite six-year-old firmly in the forefront of my mind to keep me upright. I collapse into my seat. I always book at the front for no other reason than it means I can sit down quickly. I plan to spend the flight sleeping or meditating with ear buds in so that I can get off smiling when my sister comes to pick me up. One more pretty awful journey behind me.
I am on the plane now after an excruciating wait and the usual palaver with people acting as though they don’t know that they must stow their luggage. Every bloody time. There is an issue with the plane and we all have to get off whilst they find another one. I’m glad they are diligent and safe but I don’t think I can do this again so soon! By the time we are back at the departure gate I feel so sick that I’m breathing hard and I call Mr M.E., I just need to hear his voice, it’s an anchor in the seasick din.
On the way back home next week, it will easier. Why? Well partly because Exeter Airport is much smaller, so there is less distance to walk overall and seating is more frequently spaced. Also, due to its size, it’s quieter. But mainly it’s because they have done something amazing.
I can’t be sure that it was because of me, but I guess I’d like to think it was (one particularly bad trip for me, a couple of years ago as I was trying to get home I ended up sitting on the floor in a corner cradling my head just to try to protect myself from the noise and the light).
The amazing thing is this; they have introduced a small quiet room by their gates. The lights are dim and there is no noise. It. Is. Heaven. Not only does it make the journey bearable, it makes it almost pleasant.
So anyway, I keep thinking that, if I struggle like this, and there are a lot of people like me, people with brain injuries (like my dad), people with autism etc, why can’t the bigger airports make a little effort to accommodate us? And a while ago, I figured out the answer.
The world is so geared toward the able, that no one even realises we need these things! A few seats along the way, a quiet space somewhere until you have to go to the gate; these small changes would make the world of difference to people like me, who struggle with anything over about 500 metres and noise, light and crowds but are not so physically disabled as to need to be pushed about in a wheelchair.
Maybe we should start some sort of awareness thing, a petition or a campaign to make travelling easier – what do you guys think? Sound off in the comments
Love you guys, speak soon
Jo
xxx
The Real M.E. 