A Way With Words.

One of the funniest things about being a wheelchair user is just how many phrases in the English language contain typically ablest sentiments, that when said to someone using a wheelchair could be construed as offensive, even though in the majority of cases, no offense was intended.

It was mid-summer in 2015 when I bumped into my neighbour as we passed the shop he had just visited. Being British, we stopped to make awkward conversation limited to topics such as the surprisingly nice weather, and how clean his car was. At this point he laughed and said that the car was his pride and joy, and he used it everywhere outside of work. I replied, “It’s ok, I don’t walk anywhere either,” which served to break the ice and remove the last of the awkwardness between us.

In September 2016, I visited PC World to help Jarred choose a suitable laptop for his studies. After selecting the perfect machine, we went to a desk where we could discuss student package deals including Microsoft Office and anti-virus software. At the desk we were told to “take a seat”, and I simply couldn’t resist piping up with “No need, I already have one.” The poor man looked mortified until Jarred assured him that I was evil, and took great pleasure in convincing people that they had upset me, which I was in no position to deny.

On one occasion shortly before Christmas I was due to give a presentation about a group project I had been involved with. The room in which the presentation was taking place was small, and a little difficult to access from the wheelchair being an old building, so I decided to use walking sticks to cover the short distance from the reception to the presentation, as I was feeling relatively well. My lecturers were aware that it wasn’t common for me to do so, and couldn’t hide their surprise when I walked in alongside my peers. “Christmas miracle,” I said in response to their bemused looks, which consequently lightened the atmosphere, allowing the presentation to run smoothly.

Probably my favourite of all such situations occurred during the pantomime in the Student’s Union, which was like a normal pantomime but with crude language and more explicit sexual references. It was based on Aladdin, and during Jafar’s first scene, he recited his evil plan in an animated fashion. At the end of this speech, Jafar declared loudly “Not even you will stand in my way”, and pointed directly at me. In response, I pointed downwards and simply said “Wheelchair”. A flicker of a smile flashed across Jafar’s face, but with all due credit to the actor, this was his only break of character while the audience roared with laughter at his predicament.

Some people find my attempts to laugh at my situation odd, and suggest that to some it may even be offensive. However, I am always careful to make myself the subject of these jokes to avoid causing offense to others. What I do find, is that people often don’t know what to say to someone with an obvious disability, so I try to make light of the issue to make others feel more comfortable. Once they know that I am a normal person who is capable of laughing at myself, they relax and treat me like a normal person without even realising it. I get a refreshing glimpse of normality, and others lose their fear of talking to disabled people. I fail to see why this is in any way odd or offensive, and if anything I recommend it to other disabled people as a way of integrating with society. In other words, taking a stand for disability doesn’t have to be aggressive…

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The Marvel-like Origin Story with Less Explosions – Part 3.

Initially, the Graded Exercise Therapy worked well, but as time progressed it became apparent that something had gone awry. I was being pressured to increase the exercise level too quickly, and the star jumps began to cause intense jarring pains along my spine. My muscles began to ache more than they had before the therapy, and my fatigue increased seemingly exponentially. Upon returning to the physiotherapist, I was advised to stop the exercises, and was also informed that I would probably need to start using a wheelchair when I left the house. Even after stopping the exercises, the pain, fatigue, and dizziness continued to worsen, until the state in which I currently live today was reached, and I could no longer walk outside. Being too weak to push my own wheelchair, and unable to afford a powered one, I had to rely on my parents every time I left the house, and had no independence.

It took three months of arguing with my school before I was permitted to use my wheelchair in there, making me more and more ill during this time. I was also denied an assistant to push my wheelchair around school, and relied on the support of my peers, including those who had previously bullied me, to help me obtain an education. Fortunately, after another few months, the school realised their mistake, and when I started my A-levels, I was given the support I needed.

I saved up for over a year, and eventually managed to by a second-hand powered wheelchair for over £1,000. It was in this wheelchair that I completed my A-levels, and I gained the necessary independence I needed to attend university. Unfortunately, this wheelchair had air-filled tires, and with the inevitability of death and taxes, I eventually suffered a puncture. My poor wheelchair was unusable and was too expensive to repair, so I ended up with a new one, this time a brand new one with solid tires.

New Wheelchair

Even after 6 years of medics poking and prodding me, and modifying my medication to treat my symptoms, only one thing serves to alleviate the pain temporarily; hydrotherapy. I regularly visit the local swimming pool, where I perform gentle stretches and exercises, and even swim a little. The water removes the pressure from my joints, and for a few hours after exiting in the pool, I am reminded of what life felt like prior to the meningitis. For the remainder of my time, I am disabled and pain-stricken, and while this is inevitably disheartening, there is still an element of hope in my life.

Medical research continues to improve the understanding and treatment of CFS, and without using a wheelchair, I would never have met my two best friends. One is disabled herself which naturally brought us together, and the other got run over (by accident) when he tried to get between me and pizza. Similarly, I would not have met Jarred, my beloved partner-in-crime, who I only met after choosing to remain in university accommodation due to its high standard of accessibility. It is even plausible that I would not have attended university, as the meningitis made me realise how precious life is, motivating me to make the most of it by getting an education. Of course, this blog would not exist were it not for a virus finding my brain tasty.

Disability is not the life sentence I thought it would be, and has enriched and improved my time more than I could ever have imagined, so that I live a full and happy life. Disability does not mean “I can’t”.

The Marvel-Like Origin Story: Part 2.

At the time, I didn’t take in the implications of what was happening. I simply swallowed the ibuprofen and drifted back into a semi-comatose state, broken only by the cold tip of a thermometer being pressed into my armpit. My temperature had decreased, and I did not require hospitalisation. However, meningitis being an infection of the protective layers surrounding the brain, medical attention was advisable, but home visits from GPs were not available, and I was unable to make the short journey to the surgery.

Without a doctor’s note my school did not believe that I had been as ill as I claimed, and I was forced to sit an exam just one week after contracting the illness, and returned to lessons in under two weeks, including sports and dance classes. After much arguing with the school, I was eventually permitted to cut my workload down to the essentials, and dropped dance and sports altogether, but the damage had already been done.

After 6 months I still felt exhausted with minimal exertion, my muscles constantly ached, I was permanently nauseous, and my head felt like The Borrower’s had invaded my skull. I decided it was time to seek help, and went to see a doctor. After reporting all my symptoms and undergoing a small physical examination, I agreed to have blood samples taken, which all came back negative. It was suspected that I had Chronic Fatigue Syndrome (CFS), previously known as Myalgic Encephalomyelitis (ME).

I was referred to the paediatric out-patients clinic at a local hospital to confirm this suggestion. Following a more thorough investigation, the diagnosis was confirmed, and I was prescribed pain killers and other medicines to treat my symptoms, and I was referred to the physiotherapist.

The physiotherapist was a short, plump woman who was genuinely friendly and reassuring, and over the course of an hour she questioned me about my symptoms, their severity, and which regions of the body were most effected. She also assessed what exercises I was capable of performing, and decided to place me on a course called Graded Exercise Therapy. Every day I was required to do a set number of step-ups and star jumps, and to walk a particular distance, and each week the number of step-ups and star jumps, and the distance I had to walk was increased. It was designed to help me build up my energy and strength gradually, restoring me to a best state of health possible since the meningitis. Since there was, and still is, no cure for CFS, this was my best hope of recovery.

The Marvel Like Origin Story With Less Explosions: Part 1.

As a child I was healthy and active; the only illnesses to affect me were the usual bouts of colds, flu, chicken pox, and vomiting bugs that everyone invariably suffers. Living in Yorkshire meant that beautiful hikes were only a short drive away, with Mallham cove being a particular favourite of mine. I also partook in swimming, netball, and dance outside of standard sports classes in school, and frequently helped my parents with gardening and housework. By far my favourite activity was drumming, because letting the rhythm flow through what felt like my very soul was endlessly liberating. I played in two bands, and the look of surprise on the audience members’ faces as the tiny girl took her place behind the drum-kit never failed to amuse me.

On Wednesday 5th January 2011, I came home from school tired, aching, and with a prominent headache, but thought nothing of it. Assuming I was coming down with a cold, I went to bed early, and drifted off to sleep completely unaware of how different my life would be when I woke up.

In the morning the headache had worsened, my temperature was rising, and my neck felt stiff and painful. When mum switched the light on to check on me, the dim light of the energy saving bulb felt as intense as a sun burning in front of my face. Mum checked my hands and feet, which were cold, and then placed her hand on my forehead, which was extremely warm. After this I remember very little until the phone rang several hours later; my mum had completed a symptom form on the NHS website, and within minutes of submitting the form, received a phone call from a concerned nurse. I was vaguely aware of my mum speaking on the phone, and then my bedroom door opened, and the phone was pressed to my ear.

“Hello. Can you tell me your name please?” the nurse asked.

“Emma Steer,” I replied.

“And your date of birth?”

After I minute I managed to give the correct response.

“Do you have a headache?”

“Yes, a bad one, it really hurts.”

“Does your neck hurt?”

“Yes, I can’t move my head at all.”

“How is your temperature doing?”

“I’m hot and cold at the same time.”

“Any signs of a rash?”

“No.”

“Can you pass me back to your mum?”

I muttered something incoherent, and weakly pushed the phone towards mum. A short conversation ensued before she put the phone down.

“It’s viral meningitis,” mum told me, “and you need to take some ibuprofen to control your temperature. You shouldn’t get blood poisoning because it’s viral, but if your temperature continues to rise, they’re taking you to the Intensive Care Unit of Sheffield Children’s Hospital in the air ambulance.”