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 too expensive to repair, so I ended up with a new one, this time a brand new one with solid tires.

Image description: I'm sat in my powered wheelchair in a coffee shop. I have my skull and crossbones blanket on my knee, and my red top & dark blue pinafore are visible beneath my chunky knit cardigan.

Even after so many 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 on wheels.

The Marvel-Like Origin Story with Less Explosions: 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 pushed to return 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 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 the 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 before 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.”

An Unlikely Crowd.

When I tell people that I enjoy watching wrestling their eyebrows travel so far up their faces that they merge with their hairline. What surprises people even more is that when I attend live shows, I am made to feel the most welcome I have ever felt in a crowd. Many assume that the staged violence draws in a crowd of mentally disturbed misogynists, but the reality is that women enjoy watching sweaty, muscular men run around in their underpants as much as the men appreciate the women.

The main appeal of attending a wrestling show, however, has no element of sexuality. The fact is that the shows are fun to watch, the crowd is a group of friends having a good time, and the wrestlers receive the respect and admiration they deserve for mastering their craft.

You may be wondering what wrestling has to do with being disabled, so I shall reiterate how welcoming an environment it is. I am not stared at, nor ignored, and no one uses condescending tones when they speak to me. My opinions are not immediately invalidated just because I am disabled, and it is rare that the first question people ask me is how I ended up using a wheelchair. I have spent many happy hours in the company of wrestling fans, chatting, laughing, and getting to know each other. Even the wrestlers themselves accept me; when they run around the ring high-fiving everyone there, they always lower their hand so that I am not missed out. Were I to go on a night out with any of these people, I would feel perfectly safe and far less vulnerable than I do in most bars and clubs.

Image description: I'm sat in my powered wheelchair, looking back over my should at the camera, in the bottom left of the photo. In the background a wrestling ring & barriers can be seen. This was taken just before the wrestling show began, so the stage lights are on giving everything a purple tint.

Recently, when the show was searching for a new venue, they made accessibility one of their concerns so that myself and other wheelchair users could continue attending the events. This level of dedication to equality is frequently neglected by large international companies, who leave ramps obstructed, automatic doors switched off, and allow disabled facilities to be misused, let alone smaller companies.

When you see someone dressed in all black, with plenty of leather, studs, piercings, tattoos, and eyeliner, wearing a wrestling-themed t-shirt, don’t be afraid of them. When someone tells you that they enjoy heavy metal and wrestling shows, even if they don’t look like that, don’t reject them. It is these people who have unquestioningly welcomed me into their midst, and they have warm hearts and unprejudiced minds. What’s more, they are not afraid to help someone in need, such as a young disabled woman in need of companionship.

Deities, not Doctors.

One of the most difficult things to deal with as a sufferer of a chronic illness is actually something that is meant with the best of intentions, that is, prayer for healing.

I understand why people pray; it is something of a comfort blanket to submit all your problems to another being who can take care of them for you, in the same way a small child is comforted by a gentle hug from a parent or friend after grazing their knees during a fall. However, prayer doesn’t have the same appeal for others; it makes them feel awkward and uncomfortable, and I am one of these people.

Most people imagine that prayer for healing only occurs within religious groups of people, but this is not true. While the majority of such prayers have occurred within churches and related meeting groups in my case, I have had a significant number occur completely unprompted in situations that wouldn’t naturally lend themselves to deities. I have even had a total stranger approach me and ask to pray for my healing while waiting outside the theatre for the doors to open before a show.

Whenever someone prays for my healing in my presence, and I don’t immediately leap out of my wheelchair and perform a series of cartwheels, I invariably receive one of two reactions. The first is to blame me for lacking the faith God requires to be able to heal me, which only ever served to push me further away from God, and to distance me from organised religion. The second is to say that God has a plan for me, of which disability is a part, as if that would be enough to stop the pain. Some would even argue that this blog is part of God’s plan; it’s true that I wouldn’t be writing this was I not disabled, but that implies that the decision to try and make a difference to the treatment of disabled people is not my own, and I find that degrading. To be able to deem my efforts virtuous, they need to be the work of my own hands.

I have no issue with people praying for healing, and their kind-hearted and well-meaning sentiments are much appreciated. I simply wish that people would pray for my healing on their own, and would keep their thoughts about why I was not healed to themselves, or that they would let me ask for prayers for healing when I felt ready for them. It is not that I do not want to be healed; I simply wish to have the time and energy to prepare for such a life-changing event.

All disabled people will have very different feelings and experiences concerning healing and prayer, and I am sure that some will completely disagree with me. However, it may be worth asking how someone feels about the subject before immediately jumping into miracle mode, to save the discomfort and embarrassment of everyone involved.

Debacles of a Disabled Scientist.

People are often surprised to learn that nutrition is not a pseudoscience about eating your greens, but is in fact the study of the complex biochemical interactions between nutrients and the human body and how that influences our health. This misunderstanding is only partly explained by the overuse of the term “nutritionist”, which encompasses everything from someone with a 2-day course from a dodgy website to someone with a PhD and lifetime of experience in nutrition. When I persuade someone to be honest with me about this confusion, they admit that despite the work of all feminists, a typical scientist is still pictured as a man in their minds. Since nutrition is regarded as a woman’s subject, it is therefore not deemed a true science. What is more, once people are aware of the scientific basis of the subject, they remain confused as to how a disabled person like myself could possibly use a laboratory. This is in spite of the fact that one of the most prominent scientists of this day and age was also one of the most disabled people on the globe. It baffles me that after all the publicity surrounding Stephen Hawkins, they made a movie of his life story for crying out loud, people still assume that disability means I can’t do science.

Using a wheelchair in a laboratory is not without its challenges. Trying to drive what is essentially an over-sized go-kart down a narrow passage lined on both sides with precision engineering glassware worth several thousand pounds is an expensive disaster waiting to happen. Similarly, the height of the workbenches would warrant the use of a periscope, and some students are still not entirely used to the soft whine of motors followed by a gliding ponytail, the only thing visible above the benches that signals my arrival. Still, once perched on a lab stool with my wheelchair pushed to one side, these issues are overcome, and since I am unable to walk any substantial distance, I manage to wheedle my way out of doing the washing up too.

Image description: Inside the chemical analysis lab in the School of Food Science & Nutrition. Stands holding a variety of equipment including various flasks, burettes, & pipettes are set up on the work top. Two people in lab coats can be seen working in the background.

Like any normal student I enjoy the chance to have fun, so when my colleagues were using automatic pipettes to determine just how far an ejected pipette tip could be thrown, I did not fail to join in. However, being an abnormal student also gives rise to much hilarity. When using an atomic absorption spectrometer to measure the iron and calcium content of a cake, we were warned of the dangers of using this piece of machinery, in particular the canister of explosive gas that was used to fuel it.

“If the flame suddenly expands, run,” our lab technician told us. “If it disappears for no reason, run. If the tube running from the canister to the spectrometer catches fire, run…”

I raised my hand; “What if you can’t run?”

The colour drained from the lab technician’s face. Thinking he had offended me, he struggled to find a suitable reply. After leaving a short pause for dramatic effect, I broke into a wide grin, and with relief the technician realised he hadn’t offended me at all, and I was simply and perhaps cruelly making fun of his chosen words.

Similar incidents are not limited to the laboratory alone, for when answering three questions correctly in quick succession during a seminar, my lecturer stated, “You’re on a roll.”

I didn’t even say a word before my lecturer realised his error, turning the colour of beetroot and spluttering an apology before I began to laugh, accompanied by the rest of the packed lecture theatre.

There is no reason why my particular disability should limit my prospects in the field of nutrition. Some people feel that they are too disabled to conduct intricate experiments in a laboratory, and would perhaps feel uncomfortable attempting to do so, but for those who wish to explore science, I hope that you are not limited by the ignorance of others. While there is something to be said for realism, I can’t help wondering how many great scientific discoveries have been missed because people were told that they were incapable because of their disability, gender, race, or sexuality.

The Poppy Man.

While there are many negative aspects to using a wheelchair, and it is undeniable that I am treated differently to an able-bodied individual, sometimes the response of able-bodied people towards me can be uplifting. Take, for example, the smaller front wheels of my wheelchair getting trapped in the gap between the carriage and platform on the London Underground. A stranger saw my difficulty and completely unprompted helped to lift my front wheels onto the platform, disappearing into the crowd before I had a chance to say thank you.

One such occasion occurred when I was 16 that I will never forget, on a cold, wet, inconspicuous November day about a week before Remembrance Sunday. I had been helping my dad with the shopping as he is colour-blind and finds selecting ripe fruit difficult, and we were heading towards the adapted till designed for those with disabilities. A woman had spotted the shorter queue at this particular till, and despite the fact that I was clearly heading towards it and have little choice about what till I use, pushed in front of me. I bit my lip as I could tell she was the type of arrogant and self-righteous person who will accept no reprimand, and patiently waited behind her in the queue while she unloaded her over-flowing trolley onto the conveyor belt.

What I had failed to notice was the man selling poppies in honour of Remembrance Day directly opposite the till, who had seen what had happened. When the woman in front of us eventually left, I went to the end of the till, and started to help my dad pack the bags. Upon seeing a movement out of the corner of my eye I turned my head to see the man standing next to me, holding a poppy; it wasn’t even one of the flimsy paper ones, but one from Pinterest knitted with black and red wool and a safety pin attached to the back.

“I’ve just seen how that woman treated you”, he told me by way of introduction, “and I’m giving you this because by holding your tongue, you kept the peace.” He then handed me the poppy without taking payment and wandered back to his stall, where people continued to ignore him.

My dad of course saw this and when we had finished packing the bags he walked over to the stall, thanked the man for his kindness and bought a poppy. We never knew his name and he forever became the poppy man.

I kept the woolen poppy pinned to my lanyard, which keeps all my keys conveniently in one place, as a reminder to myself when someone treated me as that woman had, that kindness and empathy still existed. I was devastated when one day I returned from a shopping trip to find that the poppy had fallen off my lanyard, and was nowhere to be found, but even without the memento the memory of the poppy man will never fade, and deserves no less than to be immortalised in words.