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.