9pm, Friday 15th June
I left the Bradley Unit today. Six months and 19 days have passed since I entered the rehab unit, six months and 19 days spend evolving, adapting and mitigating pain. Six months and 19 days of bringing my core, arms and legs back to life, progressing from bedbound and reliant on hoist transfers to walking out the door on crutches.
Before making the long 100m walk from my room to the car I had spent the morning taking it easy, avoiding any emotional goodbyes. In physio I had final practice on the stairs before making a ceremonial 100m walk to the counter of the local burrito bar, to place an order, then sit down and eat. None of which I could have done when I arrived in the unit back on the 26th of November.
People often ask what it is like to walk for the first time and what goes through my head? But even now, all I think about as I walk is ‘don’t fall now’ as I search for ways to normalize my walking technique, without of course adding to the risk of falling. I know that’s not a particularly exciting answer but it is the truth and is my thought process for any new major improvement that I make. So, as I make the long walk to freedom no emotional thoughts run through my head, just the ‘my legs are really, really tired and I can’t wait to get in that car!’
9:45pm, Wednesday 20th June
Such is my desire to become independent that I found myself enjoying filling out a form today, strange.
10:30am, Friday 22nd June
Last night felt I could see the light at the end of the tunnel. Since Friday, whilst living at home, my walking has become more upright and I have regained independence in showering and dressing. In physio we have been working on balance, thus aiming to reduce my need for crutches. Maybe by the Autumn I will be fully independent…
1pm, Monday 25th June
As I lay paralysed in bed, fully reliant on those around me to do everything for me in Cemes Hospital in La Paz, all I wanted was to be at home, in the sun and learning to walk again. Now, as I stare across the heat sweltered garden, drinking from a glass, and in the knowledge that I can get to most places in the house using crutches, life isn’t so bad. To get here may have taken longer than I hoped, but now I’m here, life’s not so bad at all.
6pm, Thursday 28th June
BEEP BEEP BEEP… Alex’s alarm hammers into my deep sleep. It’s the first of five alarms that she sets each and every morning to make up for her habit of going back to sleep. At 11am I wake for the last time this morning but feel groggy from the heat.
Although unfortunate in getting GBS, I am very fortunate to have a loving family and a swimming pool at home. So, to rid my grogginess I went for a swim.
After lunch, mum drives me to the Hobbs Rehabilitation Centre in Liss. I agree with my physio Michelle that we have an easy session as I have worked myself hard this week doing the following sessions:
Sunday – 1k on the rowing machine
Monday – 2k on the rowing machine
Tuesday – Two hours of hydrotherapy
Wednesday – Physio
So, Michelle talks me through some pool exercises to do for myself for the first 10 minutes. At 3:15pm we practice walking in my new splints, first working on my standing balance and then the constant attempting of the perfect step. These splints are more supportive than my old ones and allow me to put my weight further forwards as they resist against my ankle, a bit like leaning forwards when wearing ski boots.
Mum arrives to see Michelle shouting instructions at me as I walk between the bars. To help me with my confidence Michelle brings out another physio to catch me if I fall forwards. I keep attempting to get the steps right and eventually I get the hang of it. I am told to lift my hands off the bars, so I do, but after each step I have to grab the bars to rebalance myself.
As a joke, or at least I think it’s a joke, Michelle suggests walking unassisted. She keeps nagging and eventually I give in. We line up and I think to myself, ‘this is ridiculous’, but I do as I am told. I take a step, lose balance and hold myself up on the physio in front. We go again and I am told not to think of anything, but it’s difficult not to concentrate 100% on each step. I take two steps and get distracted by mum holding her phone in the air filming me, almost losing balance again. Regaining concentration, I focus my eyes directly ahead. I fall into a rhythm of each step continuing the last steps momentum, it feels normal! The voice in my head gets louder and louder, ‘I’m doing it, I am actually walking’! I briefly consider all the work that I and everybody else had invested to get to this moment, it’s been a long journey. The fear of falling disappears and I am able to settle completely into the rhythm. A well of emotion starts building up in the back of my throat. The emotion builds and builds, I can’t help grinning, but the emotion won’t leave and is distracting me from walking. I can’t take it any longer and lean into the physio in front and manage to squeeze out two words, ‘that’s enough’. They grab me a chair and I sit. I’d completed 5m without crutches. I burst into tears and cannot control it. Mum in tears as well, hugs me. I’m given tissues and a glass of water but I still can’t look up. Eight months of intensive physio, eight months of my life on hold and now finally, this milestone is achieved.
We leave and mum is teary in the car. I find it easiest not to talk about it for I could get teary as well. At home I have a short nap, shower and dress myself in my new shorts and shirt. I get back in the car and we head up to London for dinner, writing this entry as mum drives.