To The Man On The Train

An open letter. 

This time last week I was gearing myself up for a long (& inevitably painful) journey. It'd been months since I'd been up north to see my mum & dad; I missed them so much. Travelling with this condition is a big deal and it severely aggravates my pain, so making the trek from Birmingham to Durham is always a lot for me to even think about. Man, sometimes just going to water my plants in the garden is all too much. Unfortunately, going anywhere is made yet more difficult when the general public perceive me as being 'normal'. 

What you did the day I met you though - I do not ever want anyone else to experience.

After recently finding out that I require multiple, major surgeries on my hips, I'd had a long, sleepless week. Desperation had set in & the urge to visit my parents was overwhelming. I was trying my best to stay strong, to act as if this whole situation wasn't terrifying me as much as it really was, but at a time like this, all I wanted was that warm, loving embrace & to be told that everything was going to be alright. 

Consequently, last Tuesday I decided to pack my bag, put on an extra thick layer of ibuprofen gel, wrapped myself up with my back & knee supports and set off on my way. That walk to the station was almost too much itself. The extra weight of my backpack, the sharp burning sensation in my lower back & hip, and the added nuisance of clicking and cracking with every step, was almost enough for me to turn around and head home after the first 100m. I didn't. As much as I understood how awful the next few hours were going to be, I needed to see my parents. I just wish you hadn't been there to turn this testing journey into a nightmare.

I made it to town on one train and just before I boarded the 4.30 train from Birmingham for a 3.15hr journey north, I spoke to the conductor. I had walked the length of the train & noticed people standing in each carriage (other than first class), due to it being so busy. As pained as I am with sitting, standing in the same spot for me is also impossible. I explained my problems to the conductor clarifying that I needed a double seat to be able to move around a lot, because of chronic pain. Her only option was for me to pay to sit in first class (even though the guy who sold me my tickets assured me I'd get the help I needed from the conductor - & I'm presuming he meant for free!) 

After already spending £70 on my ticket, the idea of paying anymore was really off-putting and not really possible for me. "It's not my fault I'm like this," I thought to myself as she was midway through her checking the price of the upgrade, "Why should I have to pay extra to be able to sit in semi-comfort for a journey I've already paid too much for?" Before she'd finished, I told her I'd leave it and would just sit on the floor until a double seat became available. She told me that the next stop, Derby, usually empties out, so I was hopeful I wouldn't be down there for too long. Looking back now, I really wish I had paid, if it meant I was able to avoid your outraged, diminishing presence.  

I set myself up on the filthy carpet, exhausted and in agony just from getting to this spot.  I tucked an old pillow that I’d brought along behind my back and stocked up on painkillers. Derby came & went, with little change in busyness. Separate single seats were here & there, but with my condition I need the space and to able to switch position in an instant - I can't stretch my legs across a stranger, or sit cross- legged with my knees prodding into someone. So I stayed on the floor; moving & stretching when necessary. Aware that every time I touched the floor to support myself and then scratched my face, I was spreading a delightful array of germs all over myself… Lovely.

Sheffield was up next. To my relief, this seemed to be a popular destination for many & I could see the seats beginning to empty out a bit. I was so excited when I saw an empty double seat right on the other side of the door! I picked up my belongings and got the space that I needed. The padded cushioning of the seat was such a welcoming change for my sore joints. I even began to feel positive and at ease about the rest of the journey (probably the codeine kicking in, ha), but not for long... 

You boarded the train in Sheffield. A mere 20-30 seconds for me in that spot and you immediately stopped by me on your way onto the train. Which is okay, I guess, just very unlucky for me. There were plenty of other empty seats right by us & you chose the one right next to me! With three bags, you asked me to move my stuff so you could sit down. I calmly explained, stupidly thinking you would easily understand, that I have a disability that prevents me from sitting properly so I needed the extra space, that I'd just got to these seats after spending over an hour on the floor, and that there were lots of other empty seats up ahead. 

Little did you care, bellowing down to me shamelessly, in a tone I can't forget, "You can not dictate where I sit!" 

Those few words have rung with me quite a lot since. Questioning & analysing just how I would have to look, in order for me to actually be able to dictate where you sat. 

How about if I had a cane or crutches by my side, would I have been able to dictate where you sat then? What if I was heavily pregnant, would that have made a difference? If I was double my age, would you have put up the front you did, or would you have quietly moved on? 

It is one thing living with a disability that happens to be invisible, but it's a whole different story when you have to open up to a stranger about it and they either couldn't give a shit, or don't believe you. Just because their perception of a disabled person is far from what is in front of them.

Attempting to hide my hurt by this comment, I tried to explain to you that I have something called Ehlers- Danlos Syndrome, which affects my joints; 3 slipped discs in my back and that I was awaiting surgery for my hips. I told you that if you were to sit down, I would need to move back to the floor because of the restricted space. Your twisted response? "Go and sit on the floor then."

What a joker. At this point, I'd had enough. I picked up my stuff and wanted to get out of the situation as quickly as possible. Flight mode had rapidly kicked in and I needed to get out of that carriage, quick time. With a tear in my eye, angry & confused as to how someone can treat a stranger in this way, I made my way through 3 sliding doors to get away from you.

Just when I thought I'd escaped your toxic ignorance, you decided to get up out of your newly found seat, open back up the door of your carriage and shout down at me (now quite a distance away) in an incredibly belittling manner, "If you had just one slipped disc, you wouldn't be able to walk!"

The stray tear turned into a flood and I struggled to catch my breath. I have been living with degenerative disc disease for almost 8 years now and the amount of pain I have suffered because of it is indescribable. Your obliviousness and harsh attitude was met with huge bewilderment. Why would anyone lie about having the problems I have? Did you really believe I was making it up, just so I could keep the seat? Why did you feel the need to end our already awful encounter (in which you ended up better off), with such a bitterly cruel and disloyal taunt?

Your hostility that afternoon was unfathomable and I sincerely hope that you never treat anybody in that way again. Living with such a crippling condition is difficult enough, without judgmental strangers like you passing purely ignorant and hurtful comments in our direction. I think I can speak for others in my position when I say that all we want is for our invisible disabilities and pain to be accepted & acknowledged, that is all. As an alternative, you decided to use what I told you against me, purely because I have the ability to walk.

Therefore, the next time you see someone who ‘doesn’t look sick’, drive into a disabled parking space and hop out like nothing is wrong, hold back the judgement. This could be a day out for them they haven’t had for months.

The next time someone who ‘looks strong’, asks you for help with their bags, do not just dismiss them because you can’t see past the ideology of someone in need. Your help could really mean the world to an individual.

And the next time somebody tells you that they have a disability, but you can not see it, do not belittle them. Believe them and accept it. Do unto others as you would have done to you. Manners maketh man…

Asshole.