Organised Time.

Having established contact with many people who are struggling with chronic illnesses like my own, I have been asked more times than I can count how I managed to study for a degree and now to write and work, while living with an illness. Admittedly this is more of a struggle than I like to let on, and to say I have stubbornness issues would be to put it mildly. However, there is one strategy I have found invaluable in the management of my disease and instead of being a fancy, marketable, secret trick, it’s actually quite boring. I manage my time very carefully.

On days when I have more academic or written work to get through than normal, I cannot manage any other tasks such as housework or going out to socialise. On these days I make sure to avoid any additional tasks where I can, focusing my energy on completing the work, leaving me time to pace myself with regular rest periods throughout the day. On days when I have an average workload I may do something such as go out to a coffee shop, or spend a little longer preparing an evening meal, but again the work becomes the main focus of the day. On days with a light or minimal workload I do what housework I can, and when I’m not doing housework I have time for social and recreational activities, usually involving cake somewhere along the line.

Inevitably schedules change at the last minute and so this system has some flexibility to it. I swap round when I am going to do which activities, or what night I’m going to cook each meal, giving me more or less time as needed depending on the day. However, on the whole this little trick keeps my daily energy expenditure approximately equal, reducing the chances of having a complete energy burnout. Although this system is perhaps a little dull it works well for me and my lifestyle, and allows me to make the most of my time and energy.

Obviously this doesn’t always work. On some days, perhaps because my body thoroughly dislikes me, even the most careful time management fails and I end up flat on my back in bed feeling like I’ve been run over by my own wheelchair while suffering from a bad cold. On these days I can do nothing more than maintain essential bodily functions, and these are the hardest days. As someone who gets bored very easily the days when I can do nothing are the most frustrating, as my mind will insist on remaining active while the rest of me just wants to lie still. These occasions are not as commonplace as they used to be, though.

My system won’t work for everyone; I’m a naturally organised person who likes to plan ahead. I simply utilised the skill that I already had to benefit my adopted lifestyle when I fell ill. There are other little life hacks that other people use to manage their own illnesses, often based on skills they are already well-practised in. They can be tailored to our individual lifestyles and used to help us whatever situation we may find ourselves in. There is no one solve-all trick.

Asking for advice from others who have experience at handling chronic illness for a long time is useful, and certainly things that help one person may become useful to another. However it is essential that we remember the individuality of our cases; the same things won’t work for everyone because everyone’s story is slightly different. Simply embrace the skills you already know and use them to your advantage.

To See, or Not to See?

In the past few trips we’ve made into town Jarred and I have noted a shift in behaviour that contradicts my “invisibility cloak” experiences; people are now able to see me. This is a massive breakthrough in the way disability is perceived by society, a bonus that cannot be ignored. Unfortunately, their actions towards me have not changed, and I still experience doors being shut in my face, and people stepping over the front of my wheelchair on a daily basis, even when I’m visible.

At first it confused me why people would do this but then I had an epiphany, albeit the most boring epiphany ever described in all of history. People are impatient.

I’ll be the first to admit that when patience was given out I was at the back of the queue, impatiently tapping my foot on the floor. Given that at the time I wasn’t disabled, I couldn’t even pull my usual trick of skipping an entire queue purely because I’m a wheelchair user. This means that when somebody is walking ridiculously slowly down the middle of the pavement, often weaving from side to side like a driver in the British Touring Car Championship, I have to ignore the urge to use my chair as a plough, and act like I have nowhere to be or nothing important to do.

Although I do earnestly try to be patient, I cannot deny that I find being stuck behind someone driving their wheelchair slowly down the centre of the pavement frustrating too. I know that some people aren’t able to travel quickly, particularly in manual wheelchairs, and I know that I should be far more patient and understanding than I am, but it gives me the pedestrian equivalent of road rage. I refuse to believe that I am the only one to feel this way, especially as I understand the trials and tribulations of using a wheelchair and still manage to get annoyed. This means that, instead of risking being stuck behind a wheelchair user who might be moving slowly, people push in front of the wheelchair to be on their way. Unfortunately for those of us who are able to move their wheelchairs at a faster pace, this results in a few difficulties.

Recently I was in a local shopping centre, and there was a choir performing Beatles songs to entertain the crowd of Saturday shoppers. Not being a huge fan of The Beatles myself, let alone choral versions of their songs, I drove my wheelchair as close to the shop-fronts as possible, moving behind the crowd that had gathered to watch. At the back of this crowd were three women, two of whom upon seeing me approach stepped forward from their position blocking a shop door (where people trying to exit the shop were getting annoyed) into the path of my wheelchair (which made me annoyed), and I swear there was a Starsky and Hutch style screech as my tyres slipped on the smooth floor although it could just as easily have been the choir. The third woman gestured to allow me past, looking particularly smug that she had been considerate enough to do so, and I bit my lip before I said something I knew I’d regret.

I wasn’t invisible, and the acknowledgement of my existence on any level shows that society is progressing towards a more tolerant and inclusive way of life. However it is clear to me that there is still progress to be made, including progress on my account to be more patient with those less able than myself. People like me have to lead by example, so my example needs to change, and that is what I aim to do.

The Writing Days.

After completing my degree at the end of May, I’ve had more time on my hands than someone wearing 15 watches at once. Instead of being the supposedly stereotypical Millennial who doesn’t lift a finger for three whole months, I’ve put a lot of my time into watching movies, which requires lifting a finger to press buttons on the remote. I’ve also been doing some writing on the side.

Contrary to popular opinion, writers are not always lazy slobs. To prove this I decided to write about what writing for a blog, an international magazine, and also working on other (top secret) projects is actually like on a day-to-day basis.

Given that I have no set time when I am required to start work it shouldn’t come as a surprise that I choose to wake up naturally, which usually occurs between 9 and 10 am depending on my alcohol consumption the evening before. Jarred usually wakes up far earlier than this and by the time I wander sleepily through from the bedroom to the lounge, he’s often been playing either Skyrim or Fallout 4 for over an hour. The kettle goes on, and while I wait for it to boil I’ll take my medicine and grab some cereal. I’m nice, so I make Jarred a coffee as well as myself.

While I eat breakfast, we’ll switch to my profile on the games console, and Jarred will control my character while I boss him around. Once we’ve completed whatever mission we were doing, I get washed and changed into something comfy, and then drift back through to the lounge and allow Facebook to bombard me with notifications. At this point, I also like to browse through the latest articles on my favourite magazines, which I prefer to call “research” rather than “procrastination”.

Lunch is usually a sandwich and some fruit, along with sparkling water and some unladylike belching. Immediately after lunch I’ll pack my laptop bag, hop into my wheelchair, and take the 5 minute journey to my favourite coffee shop that I can actually get my wheelchair into. I roll up to the counter where they see the top of my head only, and the barista greets me by name.  They then ask if I want a regular Americano with milk bringing to my table. Perhaps I ought to take this as a hint that I spend too much time in this particular café, but I’m a creature of habit.

Fuelled by the sudden caffeine rush I begin to type. Half the time I don’t think I’m even aware of the words appearing on the screen in front of me; they just materialise. An hour or so later I’ll come out of my trance, and return to the counter for re-caffeinating purposes. Then it’s back to work.

As 5 o’clock approaches I bring my writing to a close, bring my laptop to a close, and head home. I start to prepare dinner, which is usually something simple like a stir fry. Then I leave the dish washer (a.k.a. Jarred) to do my literal dirty work while I browse YouTube.

Once all the pots are clean and away, the evening relaxation after a hard afternoons’ work begins. This might entail a hot bath including bath salts and a rubber duck, watching films, or playing board games. While I nearly always lose chess and Risk, being a writer gives me a distinct advantage at Scrabble. By 10 o’clock I’m usually capable of 4-letter words only and my Scrabble prowess begins to decline. Then it’s a case of taking medicines, scrubbing my teeth, and crawling back into bed for another 11 hours. Repeat.

The Final Student Day.

On the 17th July 2017 I woke to sunlight streaming between the slats of the Venetian blinds, and was about to turn over and go back to sleep when the alarm started. I wondered why I had put an alarm on for a Monday morning when I wasn’t working, and it took me longer than I would care to admit to realise that it was graduation day. Mornings were never a strong point.

Jarred and me made it onto the university campus by 10 am, and immediately went into the union to collect tickets for myself, my parents, and an additional one I had got for Jarred as he was my “carer” for the day.

Then we wandered through to the back of the union to collect my graduation robe and hood. A porter was directing people to the correct rooms depending on whether they were taking or returning robes, or  were going to watch the graduation ceremony live via a live-stream. Without asking first, the porter directed me towards the room for watching graduation ceremonies. Surely someone in a wheelchair couldn’t possibly have obtained a degree?!?

“I’ve just been awarded a first class degree with honours,” I said in a matter-of-fact tone, “and am here to graduate.”

The look of surprise on his face was akin to the expression people wear when I tell them that my disability originated from meningitis; somewhere between Taylor Swift and brain-dead.

“Oh…” he eventually stammered, “then you need to go into this room please.” He ushered me into the robing room.

Putting on the robe was something of a calamity. Long, flowing material has a tendency to become entwined around the motors and wheels of my wheelchair, and I had to be careful not to get it tangled in the seat belt (most wheelchairs have them, I’m not just a really bad driver). As I came out of the robing room the porter looked so sheepish that I was surprised not to see a yellow anti-sheep-theft tag dangling from his ear.

After greeting a few of my friends and course mates, Jarred and I went to meet my parents. Another period of awkward small talk in the midst of a crowd ensued, and then we were being shown into the Great Hall.

The front of the stage in the Great Hall was weighed down with ivy more plastic-looking than Nicki Minaj’s rear end, and the flowers weren’t much more organic either. I was given a seat on the front row, allowing me quick access for the lift onto the stage when it was needed.

Once everyone was in the hall and seated in the correct places, the next half an hour was spent clapping almost incessantly. I felt akin to a seal trying to earn an extra fish off its trainer. When I wasn’t clapping, I was high-fiving my course mates as they went past upon returning to their seats. Soon, my hands were red and tingling, and given the warmth of the day whilst smothered in black robes, they were sweaty too.

My surname means that I am always towards the end of any such procession, so it was quite some time before another porter was helping me into the lift, ready to ascend to the stage. For the most part the clapping hid the droning noise as the lift hauled me up onto stage, but one awkward silence between clapping while a name was read out was broken by the noise of the lift. Fortunately it had solid sides, so I don’t think anyone noticed my face-palm.

The porter opened the lift door at the top and my name was called. I drove across, positioned myself for the obligatory photo, collected my certificate, and returned to what I presume was the loudest lift in the entire world.

Recieving degree.jpg

After the ceremony came the free lunch, which was the reason why so many family members had attended, and photos of the whole year group were taken. Then I was driving around, finding as many of my friends and lecturers as I could, posing for photographs, giving well-wishes, and saying goodbye to those I wouldn’t see again.

Once I had done all I needed to I returned the robe to the sheep-porter (still looking sheepish), and meandered back home through the city centre. In the blink of an eye it was over, I had a degree, a huge student loan to pay off, was no longer a student, and was now expected to act like a proper adult. For all the happiness of achieving what I had, there was also a little sadness that it had come to an end.

Mike and me.jpg

Mum’s left foot is doing the disabled equivalent of a photobomb…

The Student Days.

It’s only after I’ve been writing this blog for several months that I’ve come to realise that I’ve never actually discussed what I do on a day-to-day basis. Admittedly the “day in the life of” trope is somewhat clichéd and overused and since my daily habits have changed drastically over the past few months, it’s a little difficult to give an accurate representation of what I would deem an ordinary day right now. Therefore, I’ve decided to write what an ordinary day entailed as a disabled university student, and in the future when my routine has settled down, I may be able to tell you what life as a disabled employee is like.

The alarm clicked into life at 7 am, and the sounds of Planet Rock slowly pulled me back to the land of the living. A few minutes later I would feel the bed springs move underneath me as Jarred hauled himself out of bed, while I remained immersed among the sheets. The kettle was switched on and I gradually sat myself upright while Jarred prepared breakfast, which he insisted on bringing me while I was in bed (although I didn’t exactly resist). While we ate breakfast, Jarred read the news as if he were in a 1950’s sitcom with a futuristic twist; the news was on his phone.

20 minutes, 1 cup of coffee, and a bowl of cereal later, I finally forced myself to leave the warmth of the bed and wandered over to the medicine cupboard. I’ve got into the habit of swallowing all the pills I have in a morning in one gulp to save time and very occasionally one would get stuck on my tongue, leaving a bad taste even after I’d brushed my teeth. After a quick wash I got dressed, usually jeans and a sweater or t-shirt, brushed my hair, applied a little make-up if I could be bothered, and pulled on my trainers.

At this point I often sat down at my computer and caught up with all the emails and messages that had accumulated overnight, and then I would nip across to the union to pick up something for lunch.

Lectures often started at 9 am, perhaps 10 am if I was lucky, and the rest of the morning was spent moving between different lecture theatres, writing down my notes as quickly as I could, often compromising on legibility in the process. If I didn’t have lectures in the afternoon, I was meeting with team mates for group projects, meeting with my supervisor for my dissertation, or working in the laboratory. The time often passed quickly while I was kept occupied, and I relished the experience.

By late afternoon I was usually pretty tired so I would go home, ditch my books and bags on my bed, and head back to the canteen for something hot to eat, reuniting with Jarred in the process. After eating whatever was on offer that night and catching up on how each other’s days had gone, Jarred and me would return to my apartment, where I would write my lecture notes up neatly. Longer tasks like researching and writing assignments, or things for group work, I would complete at the weekend when I wasn’t as tired.

I had usually finished my work by 8 pm in the evening, when I would have a warm shower, most of which was spent washing my ridiculously thick and frizzy hair, before pulling on the comfiest pyjamas possible and crashing in front of my favourite YouTube channels alongside Jarred. If we were feeling particularly silly,we would play Snakes and Ladders with all 6 counters that came with the board, adding an element of strategy by having to think about which piece to move to avoid the snakes and put ourselves in a favourable position for the ladders. By 10 pm I was often yawning every thirty seconds, and so I would have my evening medication (which was too numerous to take in one gulp) and clean my teeth, before crawling back under the sheets. It always takes me quite a while to go to sleep, and my student days were no different as I stared at the digital clock face blinking the seconds away before I had to do it all over again.

Such a routine might sound a little dull, tedious even, and I cannot honestly claim to have enjoyed every single minute of it. However, it is undeniable that every single one of those minutes was worth it because the rewards were simply too great to be overshadowed by anything.

Wheelchairs in Academia.

Emma Steer (Diary of a Disabled Person) and Aidan Bizony (The Disability Diaries).

From September 2014 to June 2017, I studied Nutrition at the University of Leeds. One extremely common misconception is that nutrition it is a relatively simple subject to study, with very little hard science to get to grips with. The reality is that over my three year course, I spent many hours in the lectures studying biochemistry and human physiology in great detail, and I used knowledge from physics, chemistry, biology, and mathematics on a daily basis. In addition to the lectures, I also spent a great deal of my time in various laboratories working on food processing procedures, food analysis, and studying the effects of nutrients on cell cultures.

Much like any other academic subject, the lectures were central to helping me understand my course. At first, some of my peers seemed to think that I had been given a place on the course out of pity, but soon learned otherwise when I consistently answered questions correctly and received high marks for my work. This train of thought is entirely forgivable though, given some peoples’ attitudes to political correctness.

I was provided with an assistant to help me get around the university campus, holding open doors and lifts, moving tables and chairs to accommodate my wheelchair, and fetching and returning books to and from the library. In addition I was offered support with note-taking, especially as my lectures were intense and fast-paced, requiring a rapid rate of note-taking that produced handwriting something akin to that of a doctors’. However, given that my main technique of learning involves repeatedly writing out notes, I decided to write my own notes in order to help me learn and simply learned to cope with the ache in my wrist at the end of the day.

Unsurprisingly it was in the laboratories where I needed the most support. People had to help fetch equipment and reagents, and return them to their rightful places or the cleaning station at the end of the experiments. I was allowed to perch on a rather uncomfortable wooden stool, on the condition that I could still move quickly enough if an accident occurred. Many of these experiments took several hours to complete, and by the end I was usually so tired that I could barely sit upright, despite having all the help the university could possibly provide me with. However I only ever left the laboratory early if it was necessary, earning the respect of my tutors and peers alike.

By the end of the course I had made many friends and learned many skills. I had transformed from a miserable hub of self-consciousness to a confident and relatively independent scholar with a passion for science and health care. University helped me develop into what I am today, as it does for any other student, regardless of subject or disability.

 

In February 2016, I started an Undergraduate Degree at the University of Cape Town in English and History.  Initially, I wanted to do Law but decided to embark on my passion for Literature instead – something I’m extremely glad I did now that I think about it. While a lot of my old high school buddies spend their types in laboratories or in Finance Lectures, I chose to spend my time debating word-choice in centuries-old novels. I’m happy with what I do. It, too, is one of the few avenues in my life that can be entirely disentangled from disability. Don’t get me wrong, disability is a part of who I am, but I don’t want to be dominated by it all the time.

As much as my field allows me to separate me from my physical limitations, sometimes the campus itself and the ideologies of those around me find a way, as John Keats put it, “toll me back to my sole self.” Granted, a physical disability is bound to bring with it some challenges that mean the experience is different, but I don’t see how the real-world complications should be allowed to creep into my academic life. To think, though, that 150+ year old university built on a mountain must suddenly redesign itself for a relatively small portion of the population who have certain physical difficulties is naïve – particularly when you consider all the other problems South Africa must address.

Regardless of the various difficulties I have in navigating the campus, there are several groups who strive to make the academic experience as separate as possible from the disability limitations students face. For instance, since the campus bus system is not wheelchair accessible the UCT Disability Service arrange alternative, accessible transport so that I do not have to be beholden to friends and/or family to get me to my classes and my classes are taught in wheelchair-accessible venues.

Close to the end of my Second Year and rapidly about to be thrown headfirst into my third and final year, I continue to realise that despite the various access problems and some people’s warped understanding of what it means to be disabled, my disability has not solely been a limitation to me or my fledgling university career. In fact, considering my life-long disability has had a dramatic impact on who I am as a person, the friendships I developed at university (which I hope will remain long after we graduate) have been directly influenced by the fact that I’m in a wheelchair.

Insofar as my disability shaped my interaction with university, I think university has equally influenced my perspective on my disability. Given the largely protected nature of high school, the fact that I am exposed to a wider variety of opinions towards my disability and still can thrive illustrates that while disability forms part of your life, disability doesn’t define you.

Mission Impossible 2: Get Educated.

Ever since I first became ill I have frequently been advised by doctors to give up my education, right through from my GCSEs and A-levels up until the end of my degree. I was told that it would only make my health worse, and that I wouldn’t get decent grades or even pass. This advice may seem sensible on the surface and for some people it works even when they don’t have any choice in the matter, but I found this guidance difficult to accept from people already with a high level of education and a nice job to boot. I therefore opted to go against what the doctors said, something I would usually be cautious to do; they’re the experts after all.

First and foremost, my academic performance did not suffer significantly as a result of my illness. I passed my GCSEs and A-levels by giving up less important things like attending after-school clubs or workshops out of term time, and when I started university I moved into catered halls of residence so that I wouldn’t have to cook for myself, saving me energy. I would be lying if I denied the satisfaction I felt by proving the doctors wrong, but in all fairness to my GP, he took it lightly and wished me well.

The doctors were right in that my physical health was worsened by my choices. I had no energy to put into the various therapies that people tried to cure me with, and I had far less rest than the ideal. However, as someone who has always become bored quickly, I found that resting gave me time to brood on my situation and I would very rapidly go from restful to depressed. What my education took from me in terms of physical health I gained as a boost to my mental health, by taking my mind off the situation and giving me a positive to focus on. For me, mental illness has always been harder to cope with than a loss of physical health, as there is so little that can be done to relieve the symptoms once a relapse hits. As a result I threw myself into my work with the force of a hurricane, but burning the candle at both ends drained me of any energy I had so quickly that within days I would be back in bed. It took some time before I perfected the balance between the focus on my education to improve my mental health and the rest I needed to maintain my physical status.

There was also one other minor flaw in the medical advice given to me; employers don’t see M.E as a valid excuse to have a weaker education and less work experience than anybody else. There should be allowances for such cases, but then, who would employ somebody that would need lots of time off work due to illness over someone else with a curriculum vitae as long as their arm? Perhaps people like me actually contribute to this problem by falling in line with employer’s expectations, allowing employers to think that if one of us can do it, all of us can. Whatever the case, I decided that obtaining an education was best for me under my own circumstances, particularly because after a certain age even obtaining GCSEs becomes extremely expensive.

Some people seem to think that I’m some kind of badass straight from a movie for going out and getting an education, but the reality is that I used it as a distraction from said reality. The right person could probably make a good argument saying that this was actually an act of cowardice, and I wouldn’t oppose them. Although I did not make my decision to please those who think I’m lazy, it is true that I haven’t exactly stepped out of line with society’s expectations, and the very definition of a badass is someone who defies expectations. Whatever the case I ask people to respect my decision, as education was simply the right path for me, and the decisions of others should not be based on mine.