Part II

Part I can be read here

Part II of my stroke journey is not a diary of events after my departure from hospital. It is an examination of the period immediately after returning home from the perspective of lived experience.

Lived experience is the knowledge and understanding gained from direct, personal involvement in a particular situation or circumstance. It is distinct from medical, professional or academic knowledge and research. For every stroke survivor, indeed any individual with a medical condition, lived experience is unique - unique to their own circumstances, their condition and their ability to deal or not deal with changed circumstances.

Providing details of lived experience is a record of the consequences of the medical event one has befallen. It can and should provide huge insight to medical professionals and care providers. I’ve used the analogy of a car company not surveying drivers in terms of the cars they’ve purchased and driven, or indeed a food manufacturer not analysing market reaction to a food product sold by them.

In terms of stroke survivors, lived experience has to be viewed in one very important context. I’m not a medic, have no medical knowledge, but I recognise that ultimately a stroke is a brain injury. The very organ that is the primary cause of any physical or cognitive effects arising from the stroke, is the same organ that has (mentally) to deal with those consequences.

So, the organ that is most traumatised by the stroke, is the organ that must deal with the consequences of any damage arising from the trauma. It is also the organ that comprehends and communicates the lived experience.

That’s the dilemma, that’s the challenge that every stroke survivor faces. Recovery is assisted by immediate medical intervention, by preventative measures going forwards including medication and monitoring, by therapy services such as occupational therapy or speech therapy.

But ultimately, and I am only expressing my own opinion, it is the individual who determines the scale of recovery commensurate with their own post-stroke condition.

Recognition of the value of lived experience in the treatment and recovery of an individual must benefit the individual by inferring ownership and agency on the stroke survivor. It moves the role of the patient from being predominantly passive, to having an element of control over their own recovery.

For me, and I’ve talked to a lot of stroke survivors about this topic, so much is likely to have been taken away from your life (and that of your family, friends and work colleagues). The scale of the damage caused obviously differs from person to person, the scale of recovery differs too. However, get any group of stroke survivors together (such as in the peer to peer support groups) and loss is a topic that comes up time and time again. 

Therefore giving some ownership and agency back to the stroke survivor must benefit them from a well-being and mental health perspective as well as their recovery.

So, lived experience and the opportunity to talk about it and share it with fellow survivors has huge value. For me personally, it has been huge, valuable and I’m a massive advocate for it.

So back to my strory. I’m home, I’m receiving the best medical care and receiving wonderful therapy - especially the speech therapy. My comprehension is beginning a long slow climb out of a pretty deep valley. I’ve got the support of my loved ones.

Apart from rapidly losing weight and being a bit clumsier than before, a little less stable, I don’t look like someone who has had a stroke. By the way, the weight loss (I’m told) may not have been stroke related.

But what about me?

As an understanding of the new circumstances I face start to become a little clearer - I can’t go back to my previous lifestyle, I may not be able to do the things I took for granted for years, the work I loved, even podcasting and writing, how do I feel?

How does the part of my body that is most injured deal with all the change around me? How does it deal with the emotions that really only the survivor can carry?

I know I was angry. Angry with myself for allowing my physical state to get to the point that all the risk factors for having a stroke were heightened to a level it was almost inevitable. Looking back, I was angry (for no logical reason perhaps) with the people around me. I didn’t realise it at the time, but I was grieving. Grieving for the loss of the person I thought I was previously.

I was also scared. Scared that the recovery might stop at any point, a sub optimal point. I was scared that I might have another stroke.

It would have been easy to give up, it would I suppose, been easy to adopt a “woe is me” type attitude. 

But deep within me I knew I was lucky - lucky to have survived in the first instance, but, despite the cognitive and mental challenges, lucky, extremely lucky not to have the severe physical issues that I saw many stroke patients having to deal with. I had a few, but they were minor compared to many of the people I saw and met. 

I knew I had walked out of a burning building. I was a bit singed and a bit frazzled, quite a bit of my previous life had been burned in the building I had escaped from, but I had survived.

Survival though and the path to recovery doesn’t come without its costs and difficulties. Some of the changes were understandable - I was constantly tired, not just sleepy tired, but a real weary, fatigue. By mid-afternoon, cognitive performance levels dropped off alarmingly. I noticed other things - long conversations were difficult, the ability to concentrate on one topic for any length of time was all but impossible.

Memory was shocking. I created an exercise for myself in which I took an article about a topic, read it and then tried to write down as much as I could remember. I remember in the early days I could hardly write a title on the topic I had just read - but with time and practice it got better.

Preperation time for meetings, phone calls, podcasts, articles I was writing took infinitely longer than at any time previously.

Other odd things occured. Before my strokes I was one of those people who never felt the cold - now I was freezing all the time - that first winter felt like living in Siberia. I had the windows closed, the heating up and would wear a coat indoors.

Other stuff I used to take a pride in, frankly no longer worked like it should. Directions? Moving across cities I previously knew like the back of my hand - to begin with impossible (still not good now). And maths, especially mental arithmetic , a shadow of its former self. 

The point of all the above, and I could genuinely write hundreds of examples of the cognitive changes that occured, whilst battling with giving the appearance of business as usual, is that what goes on in the mind of a stroke survivor should never be under-estimated, regardless of what appears to be the case.

For a stroke survivor to deal with all of this, and I stress I am one of the most fortunate, to deal with it alone is impossible. It requires huge support, understanding and yes, the input of lived experience.

The medical professionals are amazing, the psychologists, behavioural studies people, the therapists all do a brilliant job. Most are so dedicated to their job, their work and their patients. I will always be grateful for their expertise, love and support. Yet, I’m priviliged, have access to the world’s best services. Many do not - in fact most do not. Most nations of the world have a fraction of the resources made available to me - how difficult stroke must be in those circumstances. 

I’ll continue the story, I hope you’ve stayed with me so far. I want to look at the positives, I want to look at how stroke survivors can support themselves and each other. I want to press the case for greater patient advocacy. I want better outcomes, I want us with lived experience to have ownership and agency in our recovery, to help the health services provide better outcomes.

Thanks for reading so far….