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.”

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.