I have spent the past few months living privately, locked inside of myself in many ways, trying as best as I can to be nobody and nothing, to tuck everything in and scrunch my eyes shut so that I might pass a little easier through the nastiness. I have no idea why I have chosen now to stick my head above the parapet. Perhaps it’s because I no longer care if an incoming projectile rips it off. Perhaps it is because even though I want to melt away, the feeling inside of me is growing, and it wants to be heard… and I need a little help to shoot it down. Either way, here we are. Or rather, here I am. Exposed (and by that I simply mean… present).
Since my second year of university I’ve laid on a table under a bright light and the hands of a doctor six times. April. June. July. August. Twice in September. Each time I thought and hoped it was the last time, and so far it hasn’t been. My last procedure was on the 29th of September. I went to a clinic appointment unable to hold my own head up (three days after we’d tried to reprogram my pacemaker and see if that helped) and a few hours later I was at the start of a 5.5 hour unsuccessful attempt to make my rebellious heart behave. It left me… With a very sore chest. Unable to sit up. Unable to stand up. Unable to walk. My heart was really, really unimpressed. I’d gone back to university in a wheelchair, able to walk short distances and occasionally leave my flat under my own steam. I suddenly couldn’t even lift my head without the world spinning. Since then I’ve had to use a wheelchair to go everywhere. The physical symptoms don’t bother me. I sleep a lot, I am exhausted after an hour of being out (despite the wheelchair), I can’t walk far at all, I get frequent palpitations, my vision fades to black, oh, and Skippy hurts to an alarming degree at times (that’s settling down). That I can handle. My body has imposed clear limits, and it doesn’t give me the energy to fight them. It often doesn’t give me the energy to get out of the wheelchair to get to bed, or to eat, or to lift my head. I’d rather not waste what precious little energy I have on worrying about how I feel physically. I have thoughts about it, but they aren’t for here. My summer has involved an awful lot of unpleasantness, weeks in hospital, multiple admissions, mental health crises… Things I don’t want to remember, let alone share.
Before I go any further, I want to explain something. I was bullied as a child. First because I was clever, and then because of my health issues. I am painfully shy, and I hate being treated differently because of my health. I hate standing out, I hate attention of any form. I learned at a young age that being different was very bad, and I try to hide away in plain sight to avoid my differences being sharpened and used as weapons against me. I have, for a little while, struggled with being in large groups of people. I am insecure, I am self conscious, my self esteem if quantified would be of a negative value. I hate myself, I feel like I bother everyone I interact with and so I try to do everything alone out of guilt and self loathing. I do not value myself enough to prioritise my own needs or feelings. I play down everything. I hide. I hide how I feel both physically and mentally, to blend in, to fit in, to wrap myself in that comfort. I am used to nobody having any clue how lousy I feel. I am used to being able to sit in a lecture hall with my peers oblivious to the catastrophe going on inside of me, or the fact that unless I attend a hospital within a few hours I’m not going to wake up the next day. I smother layers and layers and layers on top of any weakness, to compensate for the fact that people associate me with vulnerability because of my health issues.
Now, I am not the first person to ever be in a wheelchair. I am not the only person on my campus to be in a wheelchair. But I feel like an alien. People are not subtle when they stare. I wheeled myself across campus the other day past people wearing giant foam breasts to raise awareness of breast cancer, and I was the one people looked at (because y’know, society). People I have known for a long time suddenly treat me like a baby. Strangers treat me like I am incapable or even stop me in the street and demand to know why I am in a wheelchair. I can’t wheel myself places because my heart protests and I almost pass out, so suddenly I need people, I have to rely on people, I have to ask for help, and I have to let people help me or I can’t get anywhere. I have no independence at all. Since I was a child I’ve always been told by my doctors that I am just like everyone else and for the first time in my life I feel like… An alien. And I’m not. It’s just two wheels on a chair and if you think about it that’s kind of cool. But after the first few stares my brain suddenly ran away with its insecurity. Suddenly I cannot hide. I can’t hide my vulnerability. I have no choice but to face it. And I also have no choice but to wear it publicly. I cannot accept it, but now I also cannot escape it. And I cannot deal with that. It feels like the whole world is staring any time I go outside. People treat me so differently. And so… I became very, very reluctant to leave my flat or go anywhere on campus. London is not made for wheelchairs. It really is like being in space. And I feel like an alien every time I step outside.
Shame floods me. My skin does not crawl with discomfort, rather it writhes while I shift uncomfortably inside of it, trying to shake it off and cease to exist. When my friends are pushing me, I smile and lose myself in their conversation, with Bastille playing in one headphone to distract me from the situation I am in. But at university, that bubble falls apart.
With all of the above in mind, it is story time.
After three (I think three anyway) weeks of university, I still had yet to attend anything. I’d just had a procedure on my heart, which had ruined everything, and that should have been my biggest bother. But it was out of my control, and I realised and accepted that and let it go (I think. Maybe I’m just totally dissociated. Anyway). We had a tutorial at the medical school to discuss a case study we had been given to research and prepare information on. Attendance was compulsory, so not only could I not hide my vulnerability, but I could no longer hide that exposed vulnerability from my peers. I was going to have to face humans, and that was a big deal.
Firstly, while it is a 15 minute walk to the medical school, the pavements to get there are bumpy, the drop kerbs are at places more like cliffs, and even those pushing me commented that it was not appropriate for a wheelchair. There are buses, yes. But around here the buses are packed full of people. So many people that, because they refuse to move, there is no way you can get onto the bus with a wheelchair. And if you do, there is usually someone there with a pushchair who simply refuses to move, so everybody gets very grumpy at you until they collectively make you leave the bus so they can be on their way. None of the tube stops round here even have escalators, so a lift is far too much to ask. It meant I had to bother someone, knowing that pushing me all that way was not only an inconvenience because they’d have to get me, but also because it was going to be like a gym session (their description of the event, not mine).
I swallowed my self loathing and managed to find a very understanding human who was more than willing to help me to the medical school. Two, in fact. I thought getting there was the hard part. Uni is wheelchair accessible, it’s a medical school so y’know, they would obviously have thought about access for disabled individuals. Great! Until we got to the main entrance and for the first time in three years I noticed the flight of steps to get in the front door of the building. There was no sign for a disabled entrance. No other doors. No lift. Just steps. One of my friends went in, because she didn’t want to be late for her tutorial. I died a little bit inside, but was kind of relieved to not have to see humans. I told my other friend to leave me. She didn’t. We stood there staring at the mountain between us and the medical school, until someone on his way out happened to know that there was a ramp around the back of the building. So we set off. We found an open gate some way around the corner, and assumed, as it was the only gap in the wall, that it must lead us to the wheelchair ramp. I was so embarrassed about all the fuss, about standing out, and about the trouble to my friend. I was relieved to finally have a route inside.
We wandered around the back of the medical school, found the ramp, and proceeded to the door at the top of it which was… Locked. Never mind, we had access cards. My friend scanned the card reader. Nothing happened. She tried again. Then she began hammering on the door to the people we could see through the window. Our fellow students could also not unlock the door. Random people I had never met were staring out of the window at me and trying to unlock the door. I died a little more inside, and wanted to cry.
Eventually someone somehow made the door open. We went inside, only to realise that neither of us had any idea where the lift was. There is a very large and pretty grand staircase in the middle of the old building, but you have to go up 3-4 flights of stairs to go up one floor. There was no way on earth my heart could do that, and no way I could be carried. By chance, a passing member of staff happened to think she’d seen a lift once through some doors, and another friend said she knew where it was. We found it, and went up to the designated floor, where my other friend took over pushing me.
We entered the corridor and it said that room number 1.21-1.27 was one way and 1.27+ was another way, or whatever. My room number was pretty high, so we went the way the sign told us. The doorway was so narrow that the wheelchair barely fit. The corridor was wide enough for it and nothing else either side. People piled in behind us, because there are a lot of students and not a lot of building, and we walked along the corridor towards the room. We were one room away and then… steps to get to the other rooms. A member of staff told us to turn around and go the other way, where there was a ramp. I was so embarrassed. There wasn’t really room to turn around. In turning, we ran over her foot and almost took out someone else. Everyone had to reverse out of the corridor so we could fit by. All eyes were on me.
We went the other way round and found the ramp. The corridor was stuffed full of people, who had nowhere to stand but on the wheelchair ramp, meaning I couldn’t get to my room even though my group was already inside. I wanted to melt away, but my friend also had a place to be so she shouted “Look out people, wheelchair!” I wanted to cry. She then threatened to run people over if they didn’t move, and because they had nowhere to go, she ended up following through with this idea, and running over several feet and hitting several legs. People looked down at me with shock and outrage as they were rolled at and over, and I just turned my music up even louder and tried not to cry.
Finally we got to the room, after struggling to get through a huge heavy fire door. We knocked on the door and the tutor opened it… And the room was tiny, there was barely any room for the desk and chairs, let alone me. She made people re-shuffle and I felt so so bad for making them move. I spent the next hour trying to get over my patheticness, but I was dreading leaving.
Afterwards, nobody I knew was going back to the main university campus, so I had no way to get back and was too exhausted to go to our workshop that afternoon. Eventually my friend went out of her way to go back to the main campus so that I could get home. She has her own health issues, and walking will have exhausted her I know, and so I felt so guilty. I got back to my flat, shut the door, and crumbled. I felt very, very different. Wheelchair accessible and actually practical are very very far apart.
I was too unwell to attend anything else, so I didn’t. I met with my personal tutor last week, who completely changed the way I see myself and my mental health, and understood my wheelchair issues via his own personal life. But then yesterday I had a meeting for a group assignment we are working on. The night before, I panicked at the thought of having to leave. I cried. That morning trying to get up, each time I thought about leaving my flat I curled up under the covers in a panic, trying to literally hide from everything. It took me an hour (and the music of Bastille) to leave my room. I made it to the door of my building, saw other humans, and froze. Like… Completely freaked. I couldn’t do it. I’d already mentioned my anxiety to my personal tutor, and he got it. He understood it. But suddenly it was controlling me. My group, who I had only met once before, came to rescue me. We went to the newest building on campus.
As it was new, it had two wheelchair entrances. Amazing! Both are behind huge support pillars, so you have to be good at steering. Neither of the doors currently work. So there’s that. On our way in, a member of staff managed to help figure out the door. I spoke to my group about my anxiety and things, because I was basically having a breakdown at this stage, and they told me to contact my personal tutor. So I sent an email about how our university seems to be as accessible to disabled students as the International Space Station is to the average human, and the effect this was having on me (I had stopped sleeping, was panicking and crying at the thought of attending the workshops I had to go to the next day – aka today, and I was terrified of people and public places). Satisfied that I’d taken a step in the right direction, we eventually finished our meeting and went to leave.
But there was no member of staff. Also, this time the “out of order” disabled doors would not open at all. Neither of them. We pressed the button, my friends tried to rip the things off their hinges, random other humans stopped to help. So much fuss, with me at the centre of it… I was mortified. The only way out was a revolving door. I’m not sure if you’ve ever tried to get a wheelchair out of a small revolving door, but we very swiftly learned why there is an alternative entrance. It was not easy. It was not dignified. It was not subtle. It was not great for a shy person.
On getting outside, my group all went one way to get the tube to wherever they had to be, leaving me to somehow make my way across campus, which I have noticed is on a very very slight hill. I figured I could wheel myself. I made it maybe 20 metres before I almost passed out. By that point, I was in front of the science building where some of my friends were in lectures, so I stopped because I had no choice, and decided I’d just have to wait. It was 3:05. Their lecture finished at 5. There were a lot of people walking past and I was stopped in the middle of nowhere so they at least glanced but mostly stared (or at least that’s what it felt like). I wanted the ground to open up and eat me. It started to rain. I started to cry. For the first time in a long time, I wanted to die. Really pathetic. Totally ungrateful. Totally uncalled for. But I was more serious than I ever had been. I made a plan of how I’d do it, even calculated how much of an overdose it would take to be untreatable. And I committed to it. I was genuinely going to do it. I sat there for an hour and a half, until my flatmate realised the situation, told me I was an idiot for not saying something, ignored my statement that I didn’t want to bother him, and made his way across campus to rescue me. He found me listening to Bastille, and I thought I’d be called pathetic and stupid but people just said that the entire thing was a horrible. I was planning to go back to my flat and take all the medication I have. Instead, I got into the room, thought about doing it, and that was enough of a comfort to stop my tears.
My friends pulled through. They were outraged at the university’s provisions, and aware of how shy I am and how much I hate bothering people, and therefore the effect everything would have on me. One friend came round. Another video called me. My flat mates took me to buy alcohol because all I wanted was alcohol or painkillers so strong they might numb emotional pain too. Instead, I bought comfort food. My other friend spoke with me on the phone until past midnight.
I made it to my workshop today after several freak outs and an hour of trying to persuade myself to leave my flat again. We went into the lecture hall and I looked up to see people looking at me. Of course they were, I was at the front of the room and they were probably curious. But shame flooded me and I just wanted so badly to blend in. There was nowhere for a wheelchair in the room. I could have got up and sat in a seat, but I was scared that people would think I was faking using the wheelchair, so I stayed put. The only desk I could have used was a stand alone desk in front of everyone facing all of my peers. Thankfully, the lecturer sat at it. I tucked myself on the end of the front row, which meant I had to sit across the front of the stairs and block that passageway. In my mind everybody’s eyes were on me and their collective gaze made me squirm and want to hide away. I came home and hid. I’m still hiding. I don’t ever want to leave again.
I have a workshop tomorrow at the other medical school campus 3 miles away. Buses aren’t an option, and neither is walking. The taxi fare is £39.50. Each way. The university said they would try to fund that if I could provide a doctor’s letter, but my cardiologist has not responded. And I’ve developed crippling anxiety about going out in public places so… I’m not going. They may as well have set me lectures on the International Space Station, because it feels about as feasible for me to get there. I feel like I’m looking down on the life I used to have but I’m thousands of miles away from it. Hearts are not appreciated enough. If yours works normally, just… treasure it.
A lot of people would be ok with the situations above. A lot of people won’t see anything wrong with them. You probably think I’m spoiled or ungrateful or stupid or pathetic or all of the above. I think those things of myself for feeling this way too, so you aren’t alone. I went to Bangkok in the summer. That was not wheelchair friendly at all, so I couldn’t leave the hotel and the heat also meant I couldn’t actually leave the bed because of my heart. Plenty of people have it far, far worse. I am also not the only person on this campus in a wheelchair. But I’m not handling it right now, and I’m really ashamed of that. I just needed a place to… words.