Restrictions have come to define many people’s lives this year – understandably frustration has been vented over cancelled plans or the inability to travel. But for me, this was business as usual. For the past two and a half years, I had been unable to walk due to a condition called functional neurological disorder, which blocks messages from the brain to certain body parts. My left leg wasn’t listening, leaving me stuck and immobile.
That was, until it all changed. From September this year I was to be enrolled in a five-week treatment programme that could help me regain my mobility. Treatment would mean travelling into London every week by train during the pandemic, staying in a hotel two nights a week and interacting closely with others, taking me away from my small, low-risk Essex village. I hesitated, but my boyfriend encouraged me before I could let the doubt take hold. That was the first lesson: trusting my gut wholeheartedly.
My treatment was multifaceted: a mixture of occupational therapy, intense physiotherapy and neuropsychiatry based on a CBT method. The days involved three one-hour sessions, assessing everything from my balance and gait to my mood and negative automatic thoughts.
I’d expected learning to walk again would involve overcoming physical barriers, but my treatment taught me that only played a small part in treating my condition. Rather than being caused by a structural disease in the nervous system, functional neurological disorder is a problem with how the system works. Essentially, my software was broken, as opposed to my hardware.
Patients can find they’re more prone to functional neurological disorder due to past traumatic experiences or a highly stressful life. In my case, I suffered a stressful lumbar puncture when I was diagnosed with meningitis and sepsis. Coupled with a hectic lifestyle, it led to my brain becoming overwhelmed, and the subconscious act of moving my legs to stand or walk became a conscious one. When I had to walk or stand, I had to put thought and effort into each movement, creating a sense of fear. My brain, in its over-stressed state, began to block messages to my left leg causing numbness, which in turn led to even more fear. Learning to understand what situations and experiences were likely to cause a neurological reaction would be key to my recovery.
This was made more difficult as I was also diagnosed with chronic fatigue syndrome caused by meningitis. Even if I felt I wanted to move, I couldn’t because extreme fatigue held me back. Over time, I learned how to manage it better by pacing my hours, days and weeks. Luckily, my hospital treatment for functional neurological disorder incorporated my diagnosis and I was given plenty of time to rest between sessions, both mentally and physically.
I had to face fears that could hinder this journey. From anxiety caused by the possibility of falling over in the middle of the street, to dealing with mourning years lost to an illness. Everything needed to be put on the table so my brain could focus solely on walking.
Despite all the reading I’d done, little prepared me for week one of treatment. From learning about every part of the brain to filling out forms to try and connect how my emotional state might impact my condition, I came away with my head spinning but full of hope.
By the second week, there was incredible progress. I walked 40 steps and regained my ability to get in and out the bath by focusing on an inanimate object such as a bottle of shower gel. This worked by making my brain focus on the shape, colour and size of the object instead of on anxieties about mobility or failure.
Elated from my success, I challenged myself further. Week three saw me take my first steps outside, walking at a snail’s pace in the sunshine with my physio beside me. A world of different textures, such as gravel and autumn leaves, unfurled beneath my feet.
As the treatment continued, I sobbed down the phone to my boyfriend out of pure exhaustion. During week four, I managed seven minutes on a treadmill one day, and 14 the next. I stood up in front of a mirror to do my makeup, standing now coming entirely naturally to me and without the fear of falling. By the end of the programme, I walked half a mile to a coffee shop and back, my legs almost giving way with pride.
Before this journey, I thought that when I learned to walk again, I’d be taking flights to Nordic countries for long weekends to make up for lost time. With the pandemic, I was forced to take it easy: taking baby steps around my village as the sun shone and sparkled on the river. I became more thankful than ever for being exactly where I was, and how I was, at that moment in time.
Following the treatment, I continue to practise mental and physical activities every day. A key part is focusing on my breathing: I now very consciously learn to “reset”, and focus on nothing but breathing in and out, if I find myself struggling to walk or stand. To be able to move forward, I have had to learn to simply exist in the moment.
I’ve taken this into every aspect of my life by being kinder to myself and acknowledging I’m on a path to recovery; not everything needs to go at a million miles per hour. During my CBT sessions, I realised my inner monologue was putting way too much pressure on myself. It would berate me for not being further along in my career, not being as financially secure as I’d like, and for not meeting a whole host of other self-assigned goals. I’ve learned since to note this voice when it arises, acknowledge it, and then to reinforce positive affirmations about my life.
We have so much going on in our minds; it can’t all possibly live at the forefront. As with functional neurological disorder, I was fighting with myself to do everything at once, causing my brain to shut off completely. Since treatment, I’ve learned to literally take things one step at a time.
Hollie-Anne Brooks is a disability rights campaigner, journalist and broadcaster.