School, Sickness, and Stupidity: Part 1.

It’s been four years since I left school, and I still don’t talk about it much. There’s far too much raw, pent up emotion for me to discuss it coherently, but writing it all down should allow me to give a logical account of my experiences.

My secondary school was situated at the other end of the road I lived on, and was just visible from my parent’s bedroom window. It was set on quite a steep hill, meaning that one side of the school had an extra level built into the hillside, and it had a central forum where large gatherings and assemblies took place, with all the classrooms built on a loop surrounding this. The school opened just as I transferred to high school, meaning it was brand new; the old, dilapidated school it had replaced was being knocked down a few metres from the shiny, new building.

I was half way through Year 10 (USA 9th Grade) when a virus decided to chow down on the protective tissue surrounding my brain. Given that our GP’s surgery was closed for the day, and no other medical aid would physically come to us unless my condition grew significantly worse, we couldn’t get proof that I had, indeed, suffered such a serious illness. Unsurprisingly, the school was sceptical as to my plight without the necessary proof, and stipulated that I still sat my GCSE biology exam just one week after first falling ill. The school also stipulated that I wear my uniform, including the stuffy and uncomfortable blazer, but assured my mum that I would be provided with a well ventilated room and access to drinking water.

A couple of days after first falling ill, I started to revise as much as I could, which in all honesty wasn’t much. I felt so rotten I don’t think I took much of it in anyway. Come the day of the exam, I hauled myself out of bed early, ate a little breakfast, pulled on my uniform, and went to school. I was put in one of the hottest rooms in the building, where none of the windows opened, and I wasn’t even allowed to get water from the tap outside. To make matters worse, another girl sitting the same exam had also been ill, and therefore was in the same room as me. She turned up extremely late without her uniform, and I was made to wait to start the exam until she arrived. All I remember of the paper is wanting to use it as a pillow for my aching head, and stumbling out over an hour later wanting nothing more than to be left in peace.

Another week of bed rest later, and the attendance team at my school were ringing up constantly, nagging my mum about my absence from school. Over the phone, the doctor had advised I take several weeks off to rest following the meningitis, but without the note our case would not be heard. I was pushed back into school on a part-time basis, while the attendance team continued to pressure me and my parents until I was back full-time. This included participation is both sports and dance classes despite my mum trying her best to make them see reason.

A couple of months after sitting the exam, the results came out. I had obtained a grade B, which I was pretty pleased with under the circumstances. Unfortunately, a grade B was below my target grade, and as far as the teachers were concerned, this was inadequate. It was quite the fight to prevent being entered for a resit of the exam, and being told that my best efforts under adverse circumstances were worthless did nothing for my self-esteem. I felt like my entire life was falling apart around me into an irreparable mess, and nearly everyone was against me. I tried to put it all out of my mind and concentrate on my future exams, keeping my head down and staying out of trouble, but this was harder than I could have imagined.

Shortly after receiving my exam result, I was pulled to one side during a gym lesson for a “quick discussion”. What followed was a lengthy and entirely one-sided lecture on how it didn’t matter how academically gifted I was, being physically ill would render it all pointless. She then told me to start running on the treadmill, not walking. Had I been the more confident individual I am today, I would have reminded her to have her quick discussion with Steven Hawking and see what his reaction was, but I just nodded mutely and did the bare minimum that would qualify as running to appease her. I think this was the point where I started to truly hate school.

Eventually the summer holidays arrived, for which I was grateful. Over the coming weeks I regularly saw the GP, running tests until I was finally diagnosed with Chronic Fatigue Syndrome (CFS). Now backed up with medical evidence, I was finally allowed to drop dance and sports, but it took a further six weeks to convince the school that my timetable was still too much for me to cope with. Eventually I was allowed to drop French, and I was on a timetable that I could manage while I was so ill. Even so I still had to take some time off school due to illness, made worse by the stress of the constant hounding from the attendance team.

The Worst Days.

As diabolically insane as this sounds, it’s sometimes all too easy to forget just how bad my Chronic Fatigue Syndrome can get. I get so caught up in the managing of day-to-day events like work and chores that I forget the reason why I manage these tasks so carefully, and then a relapse arrives.

I know it’s going to be a tough day when I wake up and can’t open my eyes. It usually takes several minutes and a monumental effort to finally prise my eyelids apart, and it’s rare that I can keep my eyes open for longer than a second or two. When Jarred switches the light on it feels like I’m looking directly at the sun, and usually aggravates the dull throbbing in my head. Even when lying down, my muscles feel fatigued and my joints ache, so much so that sitting up isn’t an option, and nausea ensures my constant discomfort.

Jarred will fetch me a cup of water and my medication from the kitchen, as often I cannot face eating anything for breakfast. Then, he will go about his daily business and allow me to sink back into sheets and fall asleep.

The sleep I get on these days is not restful, but is broken regularly by short spells of wakefulness before I drift off again. I will dream vividly as I lose track of time, and while the dreams I have when I feel this way are not nightmares, they’re not exactly pleasant either. Eventually, after approximately five of these dreaming sessions, I will wake up properly. I feel more alert and aware of the things going on around me, and my eyes stay open of their own accord. At this point I know I will not sleep for another few hours.

Jarred nips in and out of the bedroom between his daily activities to check on me, so I don’t normally have long to wait before he finds me awake. If I think I can stomach it, he will make me a small sandwich or a bowl of soup, propping up our pillows on the bedhead and lifting my shoulders, so that all I have to do is shuffle slowly until I’m leant against the pillows.

After eating, if I manage to eat at all, comes the hardest part of the day. My mind will be constantly active at this point, often focussing on tasks that I had planned to attend to that day, but my body simply can’t keep up. I grow bored and restless, but can do nothing about it. If I’m lucky I might be able to read a book for a little while, but even the smallest volumes make my arms hurt as I read. Often Jarred has brought through a simple board game likes snakes and ladders, which at least takes my mind off of my condition for a short while. Sometimes I will lean on Jarred, and he will practically carry me into the lounge where I can sit on the sofa and binge watch something on Netflix, but moving me from room to room is difficult for both of us.

As the evening closes in, Jarred will offer me another small something to eat, and will then sit on the bed with a basin of tepid water, washing my hands and face for me. By this point it is all I can do not to fall onto the pillows as Jarred lays them flat on the mattress, pulling the duvet over me as I lack the necessary strength to do this. It doesn’t take me long to fall asleep, but I will be plagued by spells of waking and vivid dreams for most of the night.

These spells can last for several days, or even for a week or two in particularly bad cases. They are undeniably strenuous for me, but also apply pressure to those around me. Similarly, the backlog of tasks not done often makes the recovery harder, as once I am able to turn my attention to them, I have so many to do that it is overwhelming. Fortunately, these spells are not common; as far as CFS goes, I’m one of the lucky ones.

Pet Therapy.

In the middle of September, shortly before Jarred was due to return for his final year of university, we decided to adopt a hamster. Having had one as a teenager I already knew what resources we would need, and how to provide the best care for it, and so a couple of days later we had purchased and built a cage. Once it was kitted out with food, water, bedding, and chew toys, we were ready to adopt a furry companion.

Being unsure whether the nearby pet shop was accessible or not, Jarred went to purchase the hamster himself. He selected a 6 week old female Syrian hamster, with short black and white fur, and round, pronounced ears. Apparently, she had been in an enclosure with several others like her, but while she was running around the cage like a caffeinated Crash Bandicoot, the others were all huddled together in a ball in the back corner. He simply couldn’t ignore such an inquisitive and spirited little creature.

I was waiting at home when he returned with our new pet, who was in a little plastic carry-case with transparent sides. She was sniffing and running round, trying to take in all the new sounds and smells, one of which was me. She stopped in front of me, and put her paws against the plastic, sniffing the air vents expectantly.

We lowered her gently into her new cage, and almost immediately she began to explore. She was so small that she couldn’t turn her wheel without a little help to start it moving first, and climbing up the vertical tubes into each compartment proved to be a challenge. She was not phased, even when on multiple occasions as she neared the top, she lost her footing and slid all the way down to the bottom. Once she had visited every corner of her cage, she packed as much food as she could into her cheeks, grabbed some bedding, and began to make a nest for herself in one corner.

It didn’t take us too long to assign our little friend a name. She was christened “Tribble”, after the small, furry creatures that feature in an old episode of Star Trek.

Tribble is a great companion. Despite being nocturnal, she is relatively active during the day, often popping out of her nest for some food and water, or to rearrange her nest. The highlight of the day comes in the evening, as she wakes up properly; she absolutely adores running around the flat in her hamster ball, and as soon as we show it to her, she’s out of the cage and into the ball faster than Usain Bolt. Then it’s a case of changing her food and water, and perhaps adding a little bedding, or a treat to nibble on like a grape or slice of carrot.

Cute.jpg

Once a week, her cage gets a full clean, receiving fresh bedding as well as food and water. While Jarred disassembles the cage to clean it, I occupy Tribble in her little plastic case to prevent mischief, giving her a paper towel and a treat. She is now so comfortable with me that quite often, she will make a little bed out of her paper towel, and will curl up into a Tribble-like ball, falling asleep against the warmth of my lap.

It doesn’t matter how rubbish I feel, or how bad a day it has been, Tribble brightens every single day simply by existing.

 

Diary of a Hamster.

Monday:

The big human is always first to leave the human nest, wrapped in soft things that would make nice bedding. He go to food stash and makes brown liquid from powder. He then sit by my den, and switch on big screen with moving pictures. He control it with plastic thing that is bigger than me! It is also not edible.

I go on patrol of den when he sit by me. This way, he think I just patrol cage, not that I like his company. I don’t think he notice yet. On my patrol I eat, drink, and then pee in big wheel. Then I sleep.

The smaller, wheeled human come through later. She go to food stash and she swallow small, round things whole! She has some water, and then go again. When she come back, she is wrapped in different soft things, but if I try to borrow some she get cross.

I sleep.

When I wake up, smaller human has a screen, a bit like big one, on her lap. She is tap, tap, tapping on one part, and strange symbols appear on screen. She seem very interested in these symbols, but I do not know what they are.

I sleep.

I wake up again. Sometimes I’m alone, and I rearrange things in cage as prank. Sometimes they here, and I do patrol again to see them.

I sleep.

It start to go dark, and humans switch on mini inside sunshines. I don’t think they see in dark like me; I eat lots of carrot. They get bigger portion of food from stash, put it in pot, and stir it. Then they put it in smaller pots, and eat it. Then all the pots need wash, which big human does, while small human looks at big screen.

I get excited because I know after pot-washing time come playtime. They put me in big, blue force-field, and then let me run around their whole den! They can cross it in few steps, but I need lots of steps. While I run, I bump into things with loud noise, and the humans laugh. They point tiny screens at me sometimes, but I don’t understand.

In their nest room they have another hamster, black and white like me, in blue force-field like me. it only in one corner, on front of stash where soft bedding they wrap around themselves is kept. It annoying hamster. When I move, it copies. I run toward it, it run and stop at exactly same time. It follow me. When I try to scare it off, my force-field bounces me away. The humans seem to find this amusing, and make loud noises with voice.

They fill up my water and food stash, and hide treats around den. Sometimes I get carrot or courgette, but my favourite is grape. I love grape. They get my force-field and take me back to den. I hunt for treats, then sleep, because running make me tired.

After a bit I wake up. Humans still sat by me watching big screen. The small human swallows more round things, and then they go back to human nest. I think this is when they change into new soft bedding wrappings. At this point I start to run in wheel, making loud sound so they can hear me, and don’t miss me. It go very dark.

I sleep.

Tuesday:

The big human is always first to leave human nest…

Park Life.

If anyone ever tries to tell you that immigration is destroying Western civilisation, you might want to show them this blog post. I’m not just saying this because the extra publicity would be nice, although that is true. I’m saying it because I have solid evidence for the contrary.

Jarred and I were having a picnic in the local park, making the most of the rarely-seen sunshine, which was beginning to sink below the rooftops of the inner-city buildings. The warmth remained, however, broken only by the light breeze that fluttered past every few minutes. I was relaxed enough to find the old wooden bench we were perched on comfortable.

Park square

It being such a pleasant evening, the park was full of many people of different races and ages, the majority of which were enjoying a picnic similar to my own. There were even two girls with blonde pigtails and pink dresses running around with a puppy that is a Hollywood cliché for all that is good and innocent, although just the puppy would have been fine by me. There was also an elderly man walking alone, balancing precariously with two walking sticks, who settled himself on the freshly cut grass that was making my hay-fever go haywire.

We ate slowly, partly to relish in the summer sun, but also because we were having to keep the pigeons at bay, who seemed particularly interested in our picnic. Towards the end of our meal, I noticed that the elderly man was struggling to haul himself back to his feet, and I waited expectantly for the English family sat on the bench next to him to help. They continued to watch from the side lines, and just as I was about to nudge Jarred and ask him to go over and help instead, I saw that three teenagers were making their way over to the man, having already spotted his predicament. The two boys took an elbow each and lifted him gently to his feet, while the girl bent down to collect his walking sticks and picnic bag, hooking the bag over one handle so it could be carried with ease. The old man thanked them before hobbling slowly away, and the teenagers returned to their picnic bench, presumably discussing what had just taken place. I didn’t know exactly what they were talking about because I lack the ability to speak multiple languages, while these teenagers appeared to have a strong grasp of both English and their native Eastern European tongue, with only a mild accent distorting their exemplary English skills.

It struck me afterwards that the three teenagers had helped someone belonging to a generation that was stereotypically derogatory to immigrants, and not only had they had the compassion to help someone in need, but they had also put aside those differences to do the right thing. It’s quite possible that those differences didn’t even cross their minds, as they clearly wanted to help.

Immigrants are not bad people. I mean, what will become of those teenagers? Just think of the utter madness caused when they go on to obtain a good education or job, support community initiatives, and forge meaningful relationships with those around them. Immigrants face the same low level discrimination experienced by those with disabilities, whether intended or otherwise, and we both end-up facing similar setbacks on a daily basis. Perhaps that is why there is an unspoken, mutual respect between both groups, as has been my experience.

Worlds Apart: A Collaboration Between Aidan Bizony (The Disability Diaries) and Emma Steer (Diary of a Disabled Person).

There are a great many cultural divides between the UK and South Africa, and unsurprisingly this extends to disability. With two radically different systems of health care and financial support for the disabled, the lives of wheelchair users in either country greatly differs, as do the social perceptions and stigmas surrounding disability.

UK (Emma Steer, Diary of a Disabled Person).

One of the defining features of British culture, aside from an addiction to Gregg’s bakeries and a general disinterest in the royal family, is the National Health Service (NHS). The NHS allows UK citizens to receive medical aid whenever they need at no cost bar a portion of the tax they pay to the government. Of course, the average citizen has to pay for prescriptions, opticians, dentists, and doctors letters, costs which add up to a surprising total, but this system ensures that medicine usually reaches those who are ill regardless of what is in their bank account.

The NHS is under ever-increasing pressure to diagnose and treat more patients in a shorter time span, with less money and resources to support them, and it’s prominence as a topic on the news is growing every day. The fears that the NHS will either crumble under its own weight, or that it will financially ruin the government have lead the public to bemoan anyone who is deemed a strain upon the NHS, and on more than one occasion, I have been deemed one of those strains.

In addition to the cost of my medical care is the financial support from the government to cover the costs of using a wheelchair, as obtaining a suitable wheelchair on the NHS is a bit like trying to herd fifty cats into a bath at once. Since many assume that I am unemployed the moment they set eyes on me, or rather, my wheelchair, it is assumed that the cost of unemployment support can be added to that total. Even for those who cannot work, the stigma should not be bemoaning the cost of their financial support, but bemoaning the lack of suitable work for the disabled.

All-in-all, the bombardment of news articles depicting disability as a strain on the economy, rightfully or not, has led to a whole new set of stigmas about disability. Instead of being pitiful and patronised for our incapacities, we are despised for the effects of those incapacities. It has even been said by a prominent politician that disabled employees are problematic due to reduced productivity and increased costs of adapting the workspace to suit them, but of course he deems disability to be an inadequate excuse for unemployment, and condemns those that are forced to live that way.

The disabled are simply reduced to a number; the financial cost they inflict upon society.

South Africa (Aidan Bizony, The Disability Diaries).

While I can understand people’s frustration with the NHS because, yes, it has its flaws and we must be aware of those, I still marvel at the concept. Leave aside, for a moment, all the negatives that the NHS presents and look at the concept behind the structure: an attempt by the government to give its citizens a good, if somewhat tedious, medical scheme. South Africa doesn’t have the NHS.

Rather than having a government system that provides good, safe healthcare, South Africa’s public healthcare leaves a lot (I really mean “a lot”) to be desired. To expect South Africa, given her history, to have a medical system on par with the NHS – even in its current incarnation – is perhaps a little naïve and overly-critical but I do feel that we could be closer to the ideal of reliable, sustainable, safe healthcare than we are at present.

I know that the South African system is not necessarily the world’s worst healthcare system but, still, it leaves a lot to be desired. As bad as the public system is, I have to admit that the private system (if you can afford the high fees) is good. Luckily, we’re in a financial position to afford private medical care. As fortunate as it is that we can afford good, reliable medical care in South Africa is, it distresses me immensely to see that our premiums continue to increase with practically no rise in the benefits we receive. When you consider that inflation is a real thing, the fact that the benefits don’t grow in proportion to the premiums is all the more disturbing.

To be honest, the medical aid scheme in this country is increasingly becoming a ‘damned if you do; damned if you don’t’ thing.  But, yes, it costs a lot and it does continues to get worse but at least you get the payments you need, right? Nope. The plan that I’m on (which is one of the highest with the country’s ‘best’ medical aid) has had payments declined that I am legally entitled to. For instance: my plan allows for a certain amount to be made available to me each year for “external medical benefits” (e.g. wheelchairs) but I had an experience relatively recently whereby a chair I bought, which was within budget got declined because we didn’t file the correct paperwork. Since the reason the incorrect paperwork got filed was because Discovery, the Medical Aid Scheme, provided us with the wrong forms. To cut a long story short, we were on the verge of taking them to court when a letter from our lawyer to the CEO’s personal assistant lead to the payment we were entitled to six months earlier. The trouble aside, we at least got the wheelchair we ordered. That is until three years later when we had to repeat the process.

As bad as the NHS has gotten when compared to what it used to be; it’s still far better than the public system we have in South Africa. Hell, when I was in England in mid-2015 my parents and I decided to visit a local, NHS hospital in London and were surprised with what we saw. In retrospect, given the exposure we had of the public healthcare system, it is hardly surprising that we were shocked. We discovered that the NHS, public hospitals in England are better than the very expensive private hospitals that an elite of South African society can afford. Needless to say, the benefits of the NHS is a not-insignificant motivation to make the move to England as quickly as we can.

Things Just Got Complicated.

Relationships are complicated. Relationships while one or both partners are chronically ill or disabled results in an explosion of chaos that equals filling a volcano with Coca-Cola and Mentos mints, and then making it angry by filming it with a phone rather than living (and probably dying) in the moment.

Finding wheelchair-friendly date venues is like looking for a needle in the worlds’ largest haystack while blindfolded, and only being allowed to search with your nose and mouth. Lots of places have steps in the door, and the members of staff at such establishments don’t seem to grasp the concept that no, I can’t take a bleeding run up. Sometimes, the rarest of all luxuries will be provided in a ramp, or even more special, a level entrance. Even then, the accessible entrance may require unlocking by a member of staff who is distinctly inside the building, and once inside, the tables may be so tightly packed together it’s impossible to get around. I have even known cases where the tables are very tall, and I need a periscope to see my drink. Best of all, the inaccessibility is usually put down to “well, no one in a wheelchair ever comes in here”, having failed to understand that we can’t get in. So, the same few cafes, bars, shops, and the cinema become second, third, fourth, and fifth homes, and I have loyalty cards for every single one. It’s got so bad, that the café usually has my order ready for me by the time I get to the counter, and they are on first name terms with me.

Once we’ve embarked on a date, the second complication rears it’s rather ugly head. No one thinks it’s a date, probably because going on a date is so complicated in the first place. Jarred is mistaken for my carer so frequently I’m considering buying a bell to summon him when I need his assistance. When he puts his arm around my shoulders, or pecks me on the cheek, the looks of shock and disapproval he receives is something quite extraordinary. They seem to think that he is taking advantage of an innocent disabled girl to get laid, and that I couldn’t possibly figure this out and defend myself if this was the case. It’s not possible for someone disabled to be in a relationship of their own accord is it? Spoiler alert – it is.

Eventually, the relationship progresses to the stage where the two families wish to inspect your partner and their family. Since trains don’t appear to know how wheelchair physics works, travelling any sort of distance is difficult, and sometimes the cost of travel or their work and family commitments prevents other family members from travelling up to see us. While to some couples, this would be music to their ears because Mother-in-law being an anagram of Woman Hitler wouldn’t be so funny without the Mother-in-law clichés, most members of each respective family are actually nice people. Quite a few of Jarreds’ family have managed to travel up to the north of England to see us, and we’ve managed to travel to London for a central meeting point on other occasions. Unfortunately, moving closer to them would distance ourselves from my family, and the problem would simply affect different people.

After a while, Jarred and I moved in together. The challenge here started when none of the letting agents that weren’t exclusively for student accommodation were accessible, so Jarred ended up doing the leg work there. Then we had to find an accessible home near the city centre within our budget, which was about as likely as an Oompa Loompa being elected for the US presidency. Oh… We found an apartment that was so central to the city that it confused Google Earth, and I could access it by entering the garage and going to the rear of the building. It came within mere pounds of our calculated budget, so I put the deposit down on the flat quicker than Usain Bolt after drinking 10 cans of Red Bull before anyone else tried to steal it, and it is now fully christened with tyre tracks on the floor.

Now I just have to organise an accessible wedding…

One Good Turn.

It was a dismal day in late October, and the drizzle had soaked me from head to foot as I travelled into town. The light was fading quickly, and the temperature falling even faster. There was little doubt in my mind that the first of the winter’s frosts would develop overnight.

I turned left onto a bridge crossing a main road. People were passing across the bridge in droves, it being one of the busiest routes in and out of town for pedestrians. To one side, huddled beneath the railing, was a homeless man. His thin and worn blanket gave little protection against the cold, and every possession he had was dripping with rain water.

Nearly everyone on that bridge saw the homeless man, and nearly everyone carried on walking anyway. I’m sure they had their reasons. However, for whatever reason, I just couldn’t go past him and leave with a clear conscience.

I had a flapjack in my handbag, which I’d been planning to eat upon returning home. I reached into my bag and handed it to him without making a fuss. It wasn’t a big deal; he had far more need of it than I did. He looked up and thanked me with such genuine compassion it took me by surprise. We exchanged a few short sentences, and then I set off again, thinking nothing more of the matter.

A couple of months later, I was at a Christmas event serving free mulled wine and mince pies, which was inevitably crowded. Among those in attendance were several homeless people, who the staff welcomed along with everyone else.

I was struggling to navigate through the crowd, most of whom completely ignored me if they were even aware of my presence at all. I came to a heavy door, which I struggled to hold open as I tried to pass my wheelchair through the narrow gap without hitting anyone. Clearly someone had noticed my predicament, because I felt the weight of the door taken off my wrist. I looked up to thank the person holding the door open for me, and to my surprise and genuine delight, I recognised the homeless man I had helped before. He simply said “one good turn deserves another”, and then he was swallowed up by the crowd.

A couple of years later I was sat in a bar with a good friend, when the same homeless man walked past us and nodded at me. Naturally, this led to me explaining what had happened. When I’d finished speaking, my friend laughed and called me “the Good Bradfordian”, à la the biblical parable.

***

When I was a child attending Sunday school, the parable of the Good Samaritan had always confused me. It seemed to me to support basic racism, because we are repeatedly told that certain passers-by were expected to help, and that the Samaritan wasn’t, simply because of where he was from. I didn’t understand why being Samaritan excluded you from the expectation to help, nor why being from elsewhere guaranteed your help.

Similarly, the story also suggested that it was a good idea to help people because you would be rewarded, and the richer the rescued person was, the greater the reward. I failed to grasp why a motivation to do the right thing would be needed, instead believing doing the right thing to be the reward itself.

I expected no reward for being the one who did the right thing. Why should I? Just because I’m from a stereotypically rough city doesn’t mean I can’t help others, and have no compassion for them, and neither does being disabled. I am almost certain the homeless man expected no reward for holding the door open for me, and probably failed to understand why others wouldn’t help me either. I would hope we would be in mutual agreement upon this matter; it is simply a shame he may never get to read this.