Surviving Stroke

Make things open, it makes them better,” I said.

It’s good to show vulnerability,” I said.

And it feels like it’s probably time for me to put these words into action myself…

A couple of weeks ago I had a stroke. I can find telling people a bit exhausting, and in the first few days afterwards I found it very hard to talk about what had happened to me. I was raw, very emotional and quick to tears. But it’s not a subject I want to avoid (it’s part of me), and I don’t mind other people knowing, although I realise many people know very little about stroke — certainly I did 2 weeks ago.

I know that what happened to me is actually not particularly unusual. Countless people suffer a stroke, many far worse than me. I don’t want this to be a sob story, I’m not looking for sympathy —I’m grateful for many things.

One of the things I’ve found helpful in the past couple of weeks has been hearing how other people have responded to having a stroke, to hear their experience. It’s somehow nice to know that what I’m experiencing, how I’m feeling, others have experienced/felt too: “oh yes, that’s quite normal” are some seriously reassuring words right now.

I’ve learnt that an extraordinary 1 in 3 people will suffer a brain injury in their lifetime. That’s a massive number of people. When Emilia Clarke decided to write about her experience of having a brain injury in her twenties, she said: “It’s shocking that such a common health problem is so little known and barely spoken about. I want to break the silence on this common, silent and devastating condition.”

Like her, I want to help break that silence. In the two weeks since I had my stroke, a couple of thousand people have viewed various things I’ve written on Medium, but I mainly write about work stuff. Now I also want to raise awareness about stroke, and I hope that in future someone will benefit from me sharing my stroke story here.

It’s Friday (28 August), I’m working at home. It’s lunchtime, and I’m in the kitchen with Rebecca, my amazing wife. We’re getting lunch ready together, I’m going to cook some rice. I’ve got the rice measured out, and I now need to do the same with some water. Suddenly, I feel a bit funny, a slight tingle in my head, and I wonder if I’m coming down with something, maybe a cold? maybe Covid?

Then I get a tingle down both of my arms, and I feel that it’s going to be incredibly hard to get the water for the rice — just turning the tap on feels like it will be a huge effort. I look at my arms, my hands, the tap, the mug in my hand. I feel detached from them all. It’s like my mind is separate from my body, looking down at these hands that are somehow separate from me. I tell Rebecca I feel funny, and she looks at me worried (she later tells me that my speech was funny). She helps me sit down in a chair and asks if I know that I’m looking off to the right. I do, but it feels natural. Then I realise that my left arm feels odd. I can’t move it.

In other words, I had all of the classic FAST symptoms of a stroke, as in: Face, Arm, Speech, —and Rebecca knew it’s Time to call 999.

Yet, since things like a stroke don’t happen to *me,* (I’d never previously needed to go into hospital for anything more serious than cuts and bruises), I question the need to call 999, to go into hospital: wasn’t it all a bit of a fuss?

My brother in law was working up the road and rushed round with some aspirin for me.

I stood up, stumbled and fell into a small table and broke it, I couldn’t walk in a straight line, I couldn’t do anything with my left arm, I tried to put on a jumper and couldn’t without help. I realised I might actually be having a stroke. Suddenly hospital felt like a good idea. My father-in-law, who lives close to us, arrived. The paramedics arrived.

An ambulance wasn’t available nearby, so my father-in-law drove me into A&E, with a paramedic in the back, taking my blood pressure, which was crazy high (my systolic was over 220 — 120 is probably about normal for someone of my age).

I was able to walk from the car into the hospital, with a paramedic by my side, but as soon as I crossed the threshold of the entrance and stepped foot in the hospital, I burst into tears.

I was taken straight through to a bed and lots of people were around me, helping me, asking me questions, putting a needle in my arm. I failed two of the basic neurological tests: I couldn’t hold out my left arm, and I couldn’t squeeze the nurse’s fingers with my left hand. I was sent for an urgent CT scan on my brain. I was told that the scan results were clear, that there was no sign of any damage. A stroke nurse again did the neurological tests on me, I felt there was no point — I knew the two tests that I’d fail, but miraculously, and counter to my own expectations, I could squeeze her fingers with my left hand. It was a moment of pure joy. I was so happy! It was about two hours after I’d first felt “a bit funny”.

I continued to make an extraordinary recovery and was discharged later that same day. I felt exhausted but was otherwise fine. My brother in law picked me up from the hospital and, seeing me walk towards his car, said “you don’t look like an ill man”, we chatted all the way home. The following week I had an MRI scan, and my attack was diagnosed as being the result of a rare type of migraine. I was whacked, truly exhausted, but otherwise I felt pretty good.

When a week or so later a friend later asked me how I was doing and whether the attack had changed anything for me, I said that I felt good, although I admitted that the sensation of not being able to move my arm (even though it had lasted less than 2 hours) had stayed with me…

In just under 2 weeks, I returned to work, starting in a new role. I felt good. I worked a shortened week (three days), and then we went on a long-planned family holiday — we stayed with some close friends for a couple of nights and then went to stay in a cottage in the Wye Valley for 10 days. It felt great. The weather was good the whole time we were there. We had fun, we went for walks, we kayaked down the river, we discovered Welsh wine and beer, I went running a couple of times, I did some skipping, I saw a kingfisher (I’d never seen one before), I learnt what a single petal rose is, we saw fallow deer in the garden of where we were staying. We came home relaxed and refreshed, singing along to Simon and Garfunkel in the car, and went to bed blissed out.

The next morning (24 September) I woke up and I couldn’t move my left arm, it was completely paralysed: “not again, not again,” I thought. I stumbled out of bed and into the bathroom, knocking into the bathroom door. The left-hand side of my face was tingling and drooping, my speech was a bit slurred.

Given my previous diagnosis, we assumed that I was having another migraine, but my symptoms did not clear after a couple of hours, and when I went in to hospital, an MRI on my brain scan confirmed what I feared: I’d had a stroke. And the doctors said that my previous ‘migraine’ had actually been a ‘TIA’ (a transient ischaemic attack, sometimes called a mini stroke).

Norman Doidge, a psychiatrist, psychoanalyst, and author of The Brain that Changes Itself and The Brain’s Way of Healing, describes a stroke as “a sudden calamitous blow. The brain is punched out from within. A blood clot or bleed in the brain’s arteries cuts off oxygen to the brain’s tissues, killing them.”

In more mundane terms, a stroke is a type of brain attack. It happens when the blood supply to part of the brain is cut off, killing brain cells. There are two main types of stroke: ischaemic (due to a blocked blood vessel in the brain, sometimes referred to as a clot) and haemorrhagic (due to bleeding in or around the brain). I had a ‘lacunar stroke’ the most common type of ischaemic stroke, which results from the the blockage or closing of small arteries that provide blood to the brain’s deep structures. It was in the right hemisphere of my brain (which controls the left-hand side of your body), hence the paralysis in my left arm.

I am lucky that my nearest hospital is Addenbrookes, an internationally known university teaching hospital attached to the University of Cambridge. In some hospitals, treating people who have had a stroke is part of general medicine. In Addenbrookes, it is a separate specialist discipline. I was on a ward that only looked after stroke patients, and I saw five doctors, including
two professors of stroke medicine, one of who I was told “wrote the text book”, three specialist stroke nurses, two physiotherapists, two OTs (occupational therapists), a speech and language therapist, a neuro psychologist, and many nurses, and healthcare assistants.

It was sobering to see the number of patients admitted with a stroke. There were four beds in my room, and whilst I was there a new patient arrived in the room on average every day. It brought home to me how many people have a stroke (even though hospital admissions for stroke fell by about a third during COVID-19 lockdown).

On the flip side, I realised that this turnover was only possible because people kept leaving. I saw stroke patients make amazing recoveries in a short period of time: a man who couldn’t talk when he came in one afternoon who could talk the next morning; a man who couldn’t feed himself or sit up in bed, and didn’t want to eat food, who a couple of days later was sitting up in a chair and was feeding himself; a man who couldn’t get out of bed, who the next day the physios helped to walk.

I hope all of the staff in ward R2 (as the acute stroke ward in Addenbrookes where I was is called) get a great sense of satisfaction from the work that they do, because it’s truly life-changing for their patients.

There was almost always a lot going on in the hospital room where I was staying, a room for stroke patients who needed to have 24-hour heart monitoring. The patients typically needed a lot of care, often including help with eating, washing and going to the toilet. Each of us had several wires stuck to our chests, connected to a heart monitor. If one of the wires came off, as can happen when I rolled over in bed at night, a small alarm went off on the monitor. The staff regularly checked our blood pressure and the level of oxygen in our blood. For me these ‘observations’ were every four hours 24/7, for some people it’s every two hours. Some of the patients were confused and distressed, I saw two of them shout at and hit the nursing staff.

I have a book with me, but I’m not up to reading it. Instead I watch football on my phone and escape with music.

I remember dancing to a mix of ‘Music is my sacntuary’ by Gary Bartz in a club about 15 years ago

I watch an amazing Prince concert, as I used to do so often when I got back from school when I was a teenager, and I experience music as medicine: a close friend sends me a beautiful mix that he created earlier this year for a friend who was recovering from chemotherapy and which is intended to be listened to horizontally. It was perfect, I could feel it’s healing power. I discover the beautiful song that Bjork did with Sepentwithfeet, and tears stream down my face:

Video of Blissing Me by Bjork (featuring Serpentwithfeet)

From my hospital bed, I can see a cherry tree. It’s September, so it’s not in bloom, but I don’t care — I’m delighted to see it because this tree has had a special place in my life for over 15 years, since it features in my wedding vows. My Dad reminds me I’m not alone in thinking it is the “loveliest of trees”.

Cherry blossom opening in the spring time, filmed with time lapse technology

I had always thought of stroke as something that happens to old people. My grandpa had strokes in his 70s. It was a massive shock when my uncle died from a big stroke when he was 60. I had never heard of it happening to someone in their mid-forties.

However, the Stroke Association explains that one in four strokes in the UK happen to people of working age. Rebecca just reminded me that TV presenter Andrew Marr had a massive stroke in his early fifties, and he was fit and exercised regularly.

Even when I’ve fallen out of the habit of doing regular exercise, I’ve always considered myself to be fit and healthy. I have a great job, I eat a very heathy diet. I never thought of getting my blood pressure checked.

And, whilst having a stroke when you’re 44 can seemed massively unlucky, it also means that the prognosis for my recovery is good. My doctors told me that young people generally recover quicker, and recovery can continue months after the stroke happened.

There is even a specialist stroke charity, Different strokes, run by younger stroke survivors for younger stroke survivors.

Actress Emilia Clarke, who famously played the role of Daenerys Targaryen, Mother of Dragons, in the TV show Game of Thrones had two major brain haemorrhages (both worse attacks than mine)in her twenties, the first when she was just 24, in between filming series 1 and 2 of that show. She has set up a charity, SameYou, that aims to provide treatment for people recovering from brain injuries such as stroke.

In hospital I start to worry that I haven’t appreciated life’s simple pleasures enough. Most mornings when we were on holiday I went outside before breakfast, looked out over the valley, did some Qigong, and felt the warmth of the sun on my face and body. But had I really appreciated that feeling? I want to stretch and feel the warmth of the sun on my face and body again. Given my arm, will I ever be able to do that again? Rebecca reassures me that I will. The next day the sun is shining and she wants to take me out into the hospital garden just beyond my window. I haven’t even thought of the possibility of me going outside — it feels like another world, separate from the detached bubble of my safe ward. The nurses tell us not to go out: I’m waiting for a echocardiogram test (an ultrasound scan) on my heart, it’s not at an allocated time, and they don’t want me to miss it, it’s too important.

The following day it’s grey (it’s been drizzling), and Rebecca helps me to go outside. I walk maybe 50 metres and sit on a bench for a few minutes. It feels amazing.

The following day, after my echocardiogram, the sun is out. I’ve more confidence in my walking, so I get dressed and go outside by myself, back to the same bench. I’ve also got more strength in my left shoulder and manage a stretch. It’s a wonderful feeling. I send Rebecca a photo:

I was fortunate to be out of hospital in just under a week, and I hope to have decades of healthy life still ahead of me. The key thing for me now is to do my rehab exercises and to help my brain to recover. I can already see some early positive signs, I need to keep working so that these continue and fully bloom. Like the Lion in the Wizard of Oz, I feel like I need to ask for courage.

I’ve had an “early supported discharge” from the hospital, and I’m under the care of the neuro-rehab tam, who provide ongoing support and therapy. It’s obviously been a massive shock, and I have a lot to process (I’m still having plenty of tests to try and establish why my two attacks happened, although my consultant reassured me that he didn’t think it was the result of anything I had done). However, I saw first-hand in hospital that many people have far worse strokes than I did.

In terms of the common effects of stroke, I’m lucky: my speech is good, my walking is good, I have not experienced any communication problems (although when I’m tired — such as at the end of the day, or even after a long conversation — I sometimes articulate my words a little less clearly), I don’t have any continence problems, my cognitive abilities remain good, I’ve not had any memory loss, I don’t have any vision problems (although I feel I am slightly more sensitive to bright light), I’m not in any pain. So there’s lots I am grateful for. The key impacts for me are that I have a severely weakened left arm, and hand in particular, and I get tired quickly (fatigue is one of the most common effects of stroke). Everyone tells me that in terms of recovering from a stroke it is very early days. No one has said when it will stop being “early days”…

Thankfully, every day — with amazing support from my wonderful family — I regain some mobility and strength in my left arm and hand. I also get a bit more energy every day.

The damaged area of my brain is in the right centrum semiovale, extending into the right putamen and the caudate tail. The main function of the putamen is to regulate movements and the caudate nucleus controls voluntary skeletal movement.

The brain’s ability to heal itself, to ‘rewire’ itself is extraordinary. As psychiatrist and psychoanalyst Norman Doidge pus it in his book The Brain that Changes Itself:

“In all of medicine, few conditions are as terrifying as a stroke, when a part of our brain dies. But even in this state, as long as there is adjacent living tissue [which is fortunately the case for me], because that tissue is plastic, there is hope that it might take over.”

Neuroplasticity, or brain plasticity, is your brain’s ability to reorganize itself, which it does by creating new neural pathways. Doidge, quoting neuroscientist Paul Bach-y- Rita, explains:

“‘If you are driving from here to Milwaukee, and the main bridge goes out, first you are paralysed. Then you take old secondary roads through the farmland. Then, as you use these roads more, you find shorter paths to use to get where you want to go, and you start to get there faster.’ These ‘secondary’ neural pathways are ‘unmasked’ or exposed, and, with use, strengthened. This ‘unmasking’ is generally thought to be one of the main ways the plastic brain reorganises itself.”

So, my stroke blew up the fast, efficient motorway-style connections in my brain that enabled my brain to control and move my left arm, and now the brain is busy looking for and indeed creating entirely new, alternative pathways that go around the damaged area, re-purposing adjacent brain cells. At first, these new connections are weak and slow, but over time and the more I use them, they will get stronger and faster.

One of the pieces of advice that I’ve found particularly helpful I was given by one of Rebecca’s friends who had a stroke a couple of years ago. She advised me to pause between activities, where an ‘activity’ can be something as simple as standing up.

20 years ago my brother and I climbed Kilimanjaro together. He recently reminded me of another piece of advice, which we were given by the guides we had. They kept telling us to go “pole, pole” (slowly, slowly). We had to go really slowly, taking very small steps:

But we did that and we got to the top of the mountain.
It’s time for me to climb another mountain.

Since I wrote the above post, I’ve also written about my journey climbing the mountain recovering from stroke, and about my physical rehab, which has helped me to rediscover my arm and hand.

Senior Director @ElsevierConnect doing product strategy implementation & performance. Mainly writing about getting from A to B, & digital stuff. Personal acc’t.