In this blog, Rachel shares with us her story of recovering from viral encephalitis and how spending time outdoors was a vital part of the recovery process.
An Encephalitis Diagnosis
My journey with viral encephalitis began in March 2022. I was happy and busy, working hard as a consultant anaesthetist in Scotland, juggling work with being a mum of two girls, a wife, and being active. I mountain biked in the Tweeds Valley, in the dark, after bed time and between shifts. Life was hectic, but good, I loved being a mum, my work, and my home life too.
When I became unwell I initially thought I had overdone it. I remember trying to bike a trail I know well, and for some reason I just couldn’t do it. Within the space of a couple of weeks, I was admitted to a medical ward, with viral encephalitis.
It is hard to convey how ill you feel, with encephalitis, and I felt totally powerless and very frightened. I now understand vulnerability, but I also understand the soothing and calming effect of being listened to, of being diagnosed and taken seriously. I will always have a deep gratitude towards the medics and nursing staff that did this.
I began to settle slowly, and was discharged home after scans, a lumbar puncture, endless blood tests, repeat scans, more tests. The repeated waiting for yet another investigation result that would be delivered to me gently. My husband visited me with calmness and reassurance. I found myself understanding that the only person who could calm me down, and make me feel at ease, was him. I was now another of his dependants, needy and demanding, but so grateful for his love and resilience.
I thought that my recovery after that would be smooth but my neurologist exercised caution. He reminded me that I was going to find recovery tough, as I was exactly the wrong type of person to exhibit the patience and acceptance to recover with any grace. I initially chose not to believe him, I would be strong and unstoppable. But over the next few weeks realised that my initial recovery and treatment was just a warm up for what was to come.
Taking the Easy Path
My consultant told me that any form of physical, or psychological stress would worsen the symptoms in my recovery, so initially I took it easy. I didn’t have a choice –but at the same time I was a mum, and so life had to go on, so was determined to do everything for my girls.
Once they had gone back to school, I sat on my bed one day and looked at the hills opposite my home. Nature, and being outdoors is such a huge part of who I am. I had an overwhelming feeling where I imagined the ground opening up at the foot of one of the hills, and being able to lie down in the damp earth. I imagined how the earth would smell if I was a part of it, and how nice the darkness would be. I imagined it leaving me feeling calm, alone and still. I sat for a few mins thinking about it until I resurfaced, and understood exactly what my brain was craving. I was utterly shocked. I wouldn’t leave this world, my children and my husband for anything, but it was like my brain wanted me to.
I realised I had a decision to make, and so took my body and brain to a loch near my house. I went for a wild swim, and allowed my body and brain to understand how it felt to be immersed in a cold, damp and still environment. I held my breath and ducked under, staying there for a while in cold peace, and then came up to the surface and looked at the life around me. I saw the wind blowing the grass, saw little waves on the loch surface, watched the birds fly and a fish jump and realised that what I wanted more than anything was to remain a part of it. It was an incredibly powerful moment in my recovery.
Recovering in Nature
I began to understand that the only way I could recover was to feel it. I knew that by stressing myself I would feel the symptoms more but could use this as a gauge of how I was doing. I began to do more and more in the natural world to see what I could cope with. I started by wild swimming and walking, but soon jumped on my mountain bike, roped one of my friends into the mission, and began to build up what I could do.
Most of the time it was hard - slowly, however, and very painfully, I began to bike down steeper trails, and my small walks turned into climbing hills and smelling the heather and watching buzzards. A funny thing happens, in that when you spend most of your time living in the dark, the bits of light that you experience – the birds, the hill tops, the trails in the woods, they stick with you and light up the dark moments. I could survive in the dark, provided the light came in occasionally.
The Power of Nature
My trips into the mountains and down the mountain bike trails continued. I used them to escape the world, but also to draw something from it. I remember at one point taking my two girls, alone, up a munro. As we climbed we found cloudberries, and eventually got to the mountain summit and ate them. We looked over the mountains, whilst we ate the tart orange little berries. The mountain has been there for generations, weathered countless storms, and I understood that I could continue to weather mine. The trip landed me in bed for a few days afterwards, and my ever patient husband, for once expressed some exasperation with my approach, but he also understood. The mountains, their constancy and unmoveable nature in a time of uncertainty were a reassurance.
My trips became longer, with harder climbs and involved me shaking with fear half the time! I found a group of ladies – a sisterhood of women who escaped into the woods on a Saturday morning, left their lives behind and encouraged each other to try new jumps, new drops, to ride faster and harder. To be ok with falling and picking yourself up again, and again and again. It is almost like a reassurance now. I look at my bruised shins and feel proud and strong.
I now look back on encephalitis and its recovery and realise that it was awful and hard and unfair. It pushed me to my limit psychologically. I thought it would kill me, and then I wanted to die. But it has made me stronger, grateful to be alive and unwilling to miss any opportunity to feel and experience life and all it has to throw at me. I would not choose it but I am grateful to it in a way I never would have thought possible.
I know that my recovery strategy was pacing, but reframed as impatience, pacing about whilst feeling frustrated, and overwhelmed. Passive calmness was never going to work for me and neither was acceptance, but fighting back, pushing myself, and individualising my recovery in nature, to my own strategy, for me, worked, even though it was hard.
A few of Rachel's favourites
Without a doubt biking in the tweed valley with my husband, my daughters, Hazey with her Privateer, Bessie, and all my other friends and family. Happy place.
Sukiyaki by Kyu Sakamoto
I was introduced to it by a patient when I first started back at work again. The tune is so uplifting and beautiful, and it gave me hope and light, but then I read the words and it’s so sad and dark. It’s a bittersweet song but all the more beautiful for it. I shared it with my friends and family and we all felt the same. Maybe there is a strength we can take from sadness and perhaps life needs a balance of light and dark.