Recovering from Stroke
A personal story about sleep, trying things, and emotional complexity
Eight weeks ago (24 September) I had a stroke. Like me, most people who have a stroke survive. As Tom Balchin explains, “stroke is far more disabling than it is lethal.” The possible outcomes from a stroke vary enormously. In The Successful stroke survivor, Tom explains that in the developed world:
- 15% of people who have a stroke die shortly after
- 10% require care in a nursing home or other long-term care facility
- 40% experience moderate to severe impairments requiring special care
- 15% recover with minor impairments
- 10% recover almost completely
In my previous blogpost, which I published two weeks after my stroke, I compared recovering from a stroke to climbing a mountain — a daunting prospect and something that is best done slowly, by taking small steps.
If I’m going to climb a mountain, I like to read accounts of others who have done it before me— how was it for them? what advice do they have, what did they learn? I don’t have any advice. I can only share my story, how the journey has been for me so far — which is what I’m going to do here, in the hope that it might help others who have had a stroke or who know someone who is recovering from a stroke.
Unlike with my first post, I feel like a bit of a fraud writing this one. I’m making a really good recovery; this week I’ve started a phased return back to work, (they have been super supportive), and I’ve got a great life again. And, as the stats above show, it’s not like that for many people who have a stroke.
I’ve also written a separate partner post on my rehab journey for my arm, trying to recover its movement ability.
There’s never been a better time to survive a stroke
Having a stroke feels like it’s the worst thing that’s ever happened to me — and yet it’s weird because I also feel massively lucky:
- many people have worse strokes than I did (I kept my cognitive abilities and understanding of language, I didn’t have any memory loss, I don’t have any vision problems, I can walk, I’ve not had not any pain, my speech was only slightly impaired; the key impact for me was that I was paralysed in my left arm — and I’m right handed), and
- I’m making a good recovery (probably helped by being relatively young, I’m 44), plus
- If this is the worst thing that’s happened to me, it probably says a lot about how fortunate I’ve been in my life.
People say that no two strokes are the same.
I would add that no two stroke recoveries are the same either.
There has probably never been a better time to survive a stroke. The past twenty years have seen major improvements in understanding how the brain works and heals. In particular, we are increasing our understanding of neuroplasticity — how the brain can change its own neural networks by adding new cells or by adding or removing connections (eg creating or repurposing nearby connections to take over the connections lost in damaged areas and their functions).
“It’s amazing the brain, how it operates, how it develops. The brain is a wondrous thing.” Edwin Collins
Stroke treatments and therapies are adapting to this new scientific understanding, and there are more resources going into this area than ever. This investment is needed: there are more stroke survivors alive now than at any time in history, with 1.2 million of us in the UK alone.
Being busy and sleeping
In the weeks since my stroke, I’ve been busy recovering. For the first few weeks I wasn’t sure where the days went — sometimes they seemed to run away and disappear. I don’t know where they went, but by the time I had showered, got dressed, had breakfast, gone out for a walk, and had a cup of coffee, it felt like I’d done a lot, yet I knew that some people manage to do all of that before the start of a full working day? (I’m looking at you I Stickland.) For me, it was basically lunchtime already. And I might have a rest in the afternoon.
I get tired more easily than I used to (fatigue is one of the most common effects of stroke) and I sleep a lot more than I used to. For the first five/six weeks I go to bed with my two daughters at 8pm. We read a book together and I go straight to sleep, often for ten or eleven hours. I then started staying up a bit longer, and now I vary, sometimes I still going to bed at 8pm, most days it’s probably 9.30pm.
Reading aloud is good for me — it is training to help improve my speech, which is generally fine but which can be slightly slurred when I get tired.
Trying different things
Tom Balchin says that despite the amount of research that has been done on different stroke therapies, “there is no one best way to rehabilitate from stroke.” And so I try lots of different things. If there’s a chance it could help, I’ll give it a go. Why wouldn’t you?
In the aim of lowering my cholesterol, lowering my blood pressure (two key risk factors related to stroke) and helping my brain heal, I’ve modified my diet. I ate a healthy diet anyway, but now I eat less, I eat fewer carbs, and I eat lots of ground flax seed and lots of oily fish.
I drink less beer, and I take daily supplements, which is a first for me.
I’ve lost some weight. I wasn’t particularly overweight before, but — as a consultant in hospital put it to me — “ you could be a bit leaner.” And he was right.
I’ve had five sessions of acupuncture —and I feel these have helped, although I’ve made so many changes together that it’s hard to say what has had what effect. Nonetheless, after one session the stiffness I had had in my neck and shoulder completely dissolved, and after another I have the distinct — and amazing — feeling that I’ve got my smile back again (I lost some movement in the left side of my face).
I’m lucky in that I can still walk; the paralysis from my stroke hardly affected the lower half of my body. Nonetheless, in hospital I was uncertain on my feet and I shuffled along very slowly. So to begin with a member of nursing staff accompanied me whenever I got out if bed. Gradually my balance improved. After a couple of weeks I felt that I was walking ok, apart from my posture (which was still rather hunched up, rather than straight) and something funny about my gait that I can’t really explain, except that it felt uneven between my two sides. The physio took a look and said that I had a stiff left calf muscle; he gave me some stretches and exercises for it and told me that in three to four weeks I’d be walking fine. I’m pleased to say that he was right.
As part of my recovery and rehab, I’m almost religious in going out for a walk every day. This is partly because, as Norman Doidge explains in his book The Brain’s Way of Healing, “walking is one of the most powerful neuroplastic interventions” (partly due to the cognitive stimulation provided by moving through new places, partly due to the chemical changes that physical exercise stimulates in the brain; walking two miles per day is also the most powerful way to reduce the risk of general cognitive decline and dementia). Plus, I wanted to keep active and fit during this initial period of my rehab when I couldn’t do anything more strenuous. Over time I built up the distance that I walked. At first, it was no more than 100m, then 200m, and always with someone else; my balance wasn’t perfect, and I had a faint sense that at any time I could face plant on the ground, my left arm unable to break my fall; one day I managed a mile; four weeks after my stroke I walked five miles by myself; I’m no longer trying to increase my distances, I’m happy walking a couple of miles a day.
Resilience and fragility
I like to be able to feel that I’m continually making progress and getting better, and I find it helpful if I can demonstrate my progress through tangible improvements, like recording how long or how far I walk for. Conversely, I disproportionately feel any minor set back that takes me away from a feeling of continual progress.
About 10 days after I come out of hospital, I horribly slice the top of my index finger on my right hand (on the lid of a sardine can — what else?!). At the time, this feels like a huge set back. Because of my lack of mobility in my affected left arm, I was having to do everything with just my right hand. I was becoming quite adept at being one handed; and I was worried that not being able to use my right index finger would mean things would be harder and would take me a lot longer.
Similarly, I feel dejected when, after doing a lot of physical rehab work one day, I wake up tired and stiff the next day. I feel gloomy when I get a minor sore throat. I tweak a muscle in my left shoulder and it really affects my mood. I don’t think such small things used to shake me like this.
Emotional complexity and uncertainty
In hospital, I felt anxious and pretty emotional. I talked to a neuro psychologist there and found it helped. I told myself that there would be good days and dark days ahead for me, that there would be times when my recovery felt like ‘two steps forward and one step back’, that sort of cliched thing. But in reality I’ve found that it’s more complex than that. One day, after trying to put a small amount of weight through my affected arm, I was crawling on the floor crying, yet two hours later I was sitting on the couch, reading a book, feeling hugely positive.
I think there might be some sort of pattern or rhythm in my recovery, where I have days when I’m doing my rehab, generally getting on with life, and have the feeling that I’m recovering and improving, and then other days when I get stuck and which end up in tears — though the crying is perhaps a release that unblocks me and after which I am able to get on again. I certainly cry more than I used to; I guess I’ve got some grief and a feeling of loss.
The hardest thing for me, particularly early on, was not being able to see how things would pan out in the future. (It can be damned annoying not to have a crystal ball!…) I would often look forward and I would see multiple different future scenarios. It felt a bit like the Paul Auster novel 4, 3, 2, 1, with multiple different stories of my future that ran alongside each other in parallel in my mind. In one I would have another stroke and never be able work again; in another I would make a full recovery and return to work and normality; in another, I would be permanently disabled in my left arm and I could return to work but not in the role I was in previously; in another I would be fine but my left arm and hand would not recover beyond where they were at that time. And of course a full range of other possible futures in between those different outcomes.
I felt that if only I could see what is coming, how my journey would turn out, then I would find it easier as I would be able to prepare for that; it was the uncertainty, the not knowing that I found hard. Of course, uncertainty is a normal part of life. It’s just it’s a part that I seem to have been feeling particularly acutely over the past few weeks.
Physical rehab
The main focus for my recovery is physical rehab for my left arm and hand. At first they were completely paralysed, although I’ve now regained almost all of my movement. I’ve written a separate post about that part of my recovery journey.
Small reminders
Despite all the recovery and progress I’ve made so far, I currently still have several small reminders of my stroke:
- I feel my speech can be different from how it was; in particular, in the evening or when I get tired, I can slur my words and/or fail to articulate them clearly
- I sometimes find some food on my lower left lip after eating
- I haven’t yet re-found the full range of movement in my face, and I can often have a lopsided smile
- I have a tingling sensation in my lips and in a couple of my fingers in my left hand
- my left arm and hand are much weaker than my right
- I frequently drop things from my left hand
- I find it difficult to hold a book or a hand of playing cards with my left hand
- I eat one-handed
- I mainly type one-handed
What now? What else is possible?
On Monday mornings, Rebecca and I have started joining a weekly online 5Rhythms dance class together. We’ve danced regularly together ever since we got together (I’ve even got a memory of her dancing from before we were together). Last week during the class it was sunny, there was blue sky, I was enjoying the music, and I could also hear birds singing through the open window of the room where we were dancing. It’s so beautiful, I asked myself:
“What more do I want from life?”
I burst out crying. the past couple of weeks I’ve sometimes felt like I’m in some strange hinterland between disability and full recovery, and I don’t know whether to push on forward and try to get to the top of my recovery mountain or to be grateful for where I am.
I feel like I don’t have much patience, that I couldn’t do what many stroke survivors have to do, that it’s been easy for me. I watch a video of someone rehabilitating their leg after a stroke and learning to walk again, and I doubt that I could do that. And I know that even standing is beyond some stroke survivors. (And— nothing to do with stroke — I think of other people who have a permanently disabled limb or limbs.)
I see how far I’ve come and yet I feel frustration at not being able to do things with my left arm, things I used to do without thinking.
Is my glass half full, or half empty?
I celebrate how far I’ve come in a short period of time, what I’ve regained, and yet I also mourn what I’ve lost or can’t yet do again.
It’s still early days for me in my recovery. Some people make assumptions about stroke survivors’ prospects for recovery; there used to be a school of thought that if you hadn’t got a function back after X months/period of time, then that was it, you weren’t going to get it back. Our more recent understanding of brain healing shows that that needn’t be so. For example, Edwyn Collins’s wife reports them seeing improvements in him four years after his stroke:
“It’s not up to other people to determine how it will be for you. They don’t know you. It’s best not to listen and to make up your own story.” Grace Maxwell
That’s what I’m trying to do — write my own story. My recovery journey is not over. However, I no longer see it as a mountain to climb. Whilst I believe that there’s no reason ever to plateau, I’m no longer trying to get to a summit, a mountain top where I’ll be done. Instead, I’m trying to stay curious. I’m interested in what other movement possibilities I can discover. It could be a life journey.
I continue to try different things to help my recovery. I’ve recently started exploring the Feldenkrais method, which Norman Doidge talks about in connection to how it can help neuroplasticity, and it’s been a wonderful discovery for me, helping me to be aware of different movement options. I’ve dipped my toe into continuum movement, which I never thought I’d do but which is helping me to explore movement and to ask: what else is possible?
Recovery and healing rarely, if ever, happen alone. I’ve been really touched by how people have responded to me telling the story of my stroke. I’ve heard from many people: family, friends, colleagues (both present and past), and people I’ve never met. I’ve cherished every hug, every message, every gift, every story shared, every recommendation of things to watch, read and listen to. All of these things have sustained me, lifted my spirit, and helped me on my recovery journey. Thank you.
I give special thanks to Rebecca. What a time to be married to a bodyworker who explores the body-mind relationship! She teaches me, holds me, talks with me, plays with me, dances with me, and finds stillness with me. She does with me what spring does to the cherry trees.
