07 It’s all in the mind

Ps 73

During the weeks that followed there was a dramatic change in my attitude and behaviour. Although internally I was trying to keep my resolve strong through scripture, prayer and worship, on the outside my behaviour demonstrated fear and worry. This verse from Psalm 73 kept going round and round in my head and I would repeat it out loud to build my resolve.

I had decided that I was not going to tell people about this condition until I had seen the consultant at King’s in London and had a clear understanding of what the scans revealed. I didn’t want to create drama around it, deal with explaining what it was or manage other people’s reactions. So we kept it to ourselves only informing a few trusted people at church. We didn’t even tell family or Unique as we saw no point until we knew more and so we played it down. There was no sense in worrying lots of people unnecessarily. At that point I believed the condition to be far more serious than I had previously understood.

I began to research this condition as thoroughly as I could. I studied diagrams of the spine and nervous system in order to understand what was hidden within my body. I became worried about my sleeping position and bought different types of orthopaedic pillows to support my neck and cushions for my neck and head. I purchased a model of the spine so that I knew what my spine was supposed to look like and a walking stick as I was scared of falling. This was actually a benefit as people tend to steer well clear of me and are kind enough to offer assistance, giving me unexpected insight into another life experience.

I joined an online support group through Myelopathy.org of people experiencing similar conditions. This proved to be a double edged sword. Unsurprisingly it was filled with a range of experiences from those waiting for surgery with different levels of pain, mobility and function to those who, post surgery were still having significant pain and difficulty. This highlighted to me even more that the purpose of spinal surgery was to prevent further deterioration, not reverse the condition. From the experiences related in the group, it was clear that surgery did not always have a positive impact. The condition varied significantly from one person to the next and until I saw my specialist in London, I didn't know what my options were.

However, I did find that the online community was a wealth of information and advice about how to live safely with this condition. Having been referred to the spinal injuries unit at King’s College London, I heard nothing more from anyone and had no idea how to manage this condition. I fully expected to be fast tracked to the spinal unit and called in to be seen at any time but I had still not heard. My GP advised me to only do what felt safe and go immediately to the hospital if there was an increase in pain or I became incontinent. This is a serious issue with this condition as it may indicate severe spinal damage which may require urgent surgery to prevent permanent damage.

During a visit to the nearby shopping centre with Unique, I could barely walk 100m from the car to the shop we were visiting. It felt like I was getting worse and my body seemed to be scrunching up with each passing day. I kept looking out for signs and symptoms of the condition worsening.

Initially I had peace with the whole thing because I knew that God would work everything out and that he would use every moment for good and for his glory - whatever happened. Even if it came to the worst scenario of paralysis. But at the back of my mind the thought that this condition would get progressively worse began to grow.

As the days wore on I realised that I was walking more and more like a robot. My movements had become stiff and rigid, which probably didn’t help as I feared that I might suddenly move the wrong way and completely sever my spinal cord at the neck. I had visions that I would be completely paralysed and need to be in a wheelchair. Everything was difficult. It was hard to move around at a normal pace and do ordinary things like have a shower or get dressed, as my fingers would not coordinate to do up buttons. Clothes labels and necklace clasps rubbing against my neck was unbearable. I looked wistfully at my collection of necklaces, wondering if I was ever going to wear them again. I could no longer wear my favourite pump style shoes, as I was unable to feel them on my feet and I frequently stepped out of them without realising.

The numbness in my left leg was so bad that I could not tolerate the sensation of light fabric brushing against it. Driving our manual transmission car was excruciating as it required both my left arm and leg, which were constantly aching. At the beginning of November I bought a 16 year old automatic Mini Cooper. An essential purchase, as it turned out, as it gave me freedom and independence to get about without relying on Geof to drive me everywhere.

Up to this point, I had avoided using my stick at church, partly to avoid drawing attention to myself but also because I considered it a sign of waning hope. However, it was becoming clear to me that on my next visit to church I would need to use it.