A photographer’s blog by Iain Kendall
Although I mainly write about my photography, the last few weeks have been some I’ll never forget, and it has nothing to do with cameras.
The doctor was sympathetic and did basic observations before asking about my lifestyle – I don’t smoke, I drink little, and I’m not a particularly stressed person. She did a series of strength tests with me to see if I had any weakness. I didn’t. Finally she took some blood to do a sweep of tests that would cover a whole range of areas checked out. I made an appointment for a week later and tried to forget about it.
Tuesday, 24th March 2015
An hour later and we were making our way to another hospital across the city. There I saw a stroke specialist who began a series of tests on me to try and pin-point the effects this had had on me. Aside from a drooped face on one side, I had lost my ankle jerks and was wobbly on my feet but I still had strength. He then asked me an important question, “what do you think when we talk about stroke?” It was a big question for me; until this point I had gone from initial shock and then from pillar to post being tested, and suddenly a doctor was asking me how I felt about it. Two thoughts rushed into my mind “how is this going to affect our life?” and “why, at 34, am I dealing with a stroke?” I went with the latter. “That’s the same question I have,” he replied. I didn’t expect to hear that. “I don’t think we’re dealing with a stroke here”. He sent me for an MRI and an ultrasound of the arteries in my neck. All these came back clear and it was arranged that I would return the next day to the neurology department for further investigation.
It was good top get clear results back from the various tests that had been done. “Unremarkable” and “all fine” were the words of the day, but for me this just came back to the same question – what is it then? Is this something beyond the doctors’ knowledge and most definitely outside my control?
Wednesday, 25th March 2015
A long wait in A&E followed before a neurologist, who I was meant to meet later that day, came to meet me. He carried out the tests on my arms and legs that I had become familiar with now. I walked precariously across the hospital floor, before he asked me to stand with my feet together and close my eyes… I nearly fell on him. He sat me down again and began to talk about what was wrong with me. After two terrifying days I finally had a name for what was plaguing me: Guillain-Barre syndrome. I was shocked that I had never heard of the condition and yet as he spoke I was aware this was going to become a big part of my life.
The best way to describe Guillain-Barre syndrome is as friendly fire from your immune system on your periphery nervous system. It’s useful to think about your central nervous system as the mains of a house, and your arms, legs, respiratory system are all the appliances. My immune system had launched an attack on the cabling between and was shutting them down. It can be treated but it is all about grabbing your immune system’s attention and making it realise it is making a big mistake. Treatment is a five day course of IVIg (Intravenous immunoglobulin) to boost the immune system and make it realise the fundamental error.
But the doctor warned me that it wasn’t that simple. I was going to get worse first. I could lose the power to my legs and arms which were already showing signs of being affected. I could lose the power to breathe and swallow on my own. He warned that my mood would dip at some point and I would lose the will to fight it. I would then reach a plateau where nothing would change – I wasn’t getting better, but I wasn’t getting worse. Then, eventually, at last, came the recovery.
With this news I looked at my wife and our twenty-month old son – they would need to fend for themselves for a considerable amount of time. We had been a parenting team since he was born and now it would just be my wife to carry on, while still worrying about me. I find solutions and solve problems; now I was the problem and I couldn’t sort it. I was in a hospital bed in A&E, wobbly on my feet and paralysed in my face but by the end of the week I would likely be on a ventilator in Intensive Care. I felt so out of control.
Once a bed was available, I was moved to Edinurgh’s Western General Hospital to the Division for Clinical Neurology. While I was transported by ambulance, my wife collected things from home and ran a few errands for me. It was the first time I had been away from my best friend since this all began. I sat at the back of the ambulance where a nice paramedic chatted to me about his son, but all I could think about was when I would see mine again.
Treatment began almost immediately, and it took about two hours to complete the daily course. Each hour of each day became a countdown to when I had to sleep. Every day so far had brought an additional challenge to me each time I woke up and I already knew I was going to get worse – would it be limbs, or my breathing failing today? Would anyone notice it was the latter in time? I stayed up late and had been awake for 22 hours by the time I did try to close my eyes.
The less time I spent asleep, the fewer debilitating changes would take place – in my mind anyway. I woke up around 6am and the pins and needles had moved up my arms and legs but everything else was okay. I did the same the next night and the night after that as though I was somehow cheating the system. When the Sunday arrived, it was the last day of treatment and it was apparent that my immune system had realised its error. It was also our wedding anniversary and I spent a quiet day in my side room with my wife. My mood was low and there was nothing I could do to shake it. My body was tired in a way I have never felt before – everything was an effort and I didn’t feel like trying. Aside from that, and despite the plateau, I still faced a long recovery and a large portion of that was going to be spent in hospital. I was done in, fed up and not equipped with the small talk other people needed from me.
The next day the consultants were back on the ward and I was reviewed to see how things were going. I was better than the day before in mood and I didn’t appear to be getting any worse. I was told that they were happy with my progress, so I could head home. This was music to my ears. I could spend my recovery with my family which was all I wanted.
20th April 2015
A new beginning
27th June 2017
Guillain-Barre syndrome caused a lot of changes in my life. In a time when the future was thrown into the unknown, it became clear that I had taken a lot for granted, sat back and let others influence my decisions, and accepted the status quo. It was the difficulty that made me rethink all of that.
The effect GBS had on my photography was profound. Until that point, I made images of landscapes and cityscapes, but I suddenly I couldn’t walk the length of the room, let alone climb a hill or pound the streets. Instead, I turned the camera on those around me – my friends and family. Over the next couple of years, this extended to family gatherings, days out and, eventually, weddings. The pull to this was strong and when I was there capturing these moments, all felt right in the world.
Last year I was invited to shoot my first wedding from start to finish and I jumped at the chance. The bride and groom (the lovely Matt and Catherine, a.k.a my brother and sister in law) were the best at letting me know what they wanted but also letting me apply the style I was familiar with. I wanted to document their day as it happened and capture the wonderful couple they are. It was a fantastic experience and, at the end of the day and 18 hours on my feet, I knew I wanted to do more of it. Lots more.
The following months I continued to exercise my craft, but I also researched and took classes. Then, about two months ago, I sat down with my wife and told her I was going to make a go of it. She was so supportive. It was a moment of putting all that fear and uncertainty to one side and trusting my gut. That brings me to now – a new website and a new adventure
