What does it feel like to have a stroke? V 2.0

In June 2020, I wrote a blog titled “What does it feel like to have a Stroke?” which I posted on EnableMe.I was informed that my blog had the highest number of hits for June 2020 – A feat that made me feel quite chuffed! Thrill Seekers and Fellow Time Travellers why am I telling you this- well an occurrence last week caused me to revisit this blog and it raised an issue.

Allow me to set the scene…

During the past 7 years this question has been asked of me many times by friends, people I meet. They generally broach the topic with the phrase - “You don’t mind me asking, but what’s it feel like to have a Stroke?

And Thrill seekers for about 4 years I struggled to provide a meaningful answer.

Also, during my 7-year post period I have addressed approximately 700 student clinicians at several universities about my stroke story; my accompanying rehab program, my learnings, and insights and during Q.& A.’s after each lecture I have been asked questions on a wide range of topics.

These questions have included questions about my motivation, my opinion of the inpatient care/service delivery of rehab I received; any changes in my life/lifestyle; how I went about my rehab; even had my stroke changed my perception of my mortality and so on.

But never ‘What does it feel like to have a stroke’?

Fast forward to 19 and 20 April 2023….On these days I attended a 2-day Face to Face of the Consumer and Community Advisory Group \{CCAG] of The George Institute for Global Health in Australia at its headquarters in Sydney.

The CCAG was formed in late 2021 and I was one of nine Consumers invited to become a member of the Group. To add icing to my cake, I was elected the Inaugural CCAG Chair! An honour and a challenge!

What was challenging and stimulating was the fact that TGI was involved in a broad spectrum of medical research in a wide range of medicine, \{one of which was Stroke\} and the membership of the CCAG reflected that diversity [consumers, carers, educators, researchers\}-a property I found very appealing and intellectually challenging.

The adage “herding cats’ comes to mind [in a positive way\} when describing my tenure. It was for me an opportunity to bring out my rusty corporate consulting skills plus my Lived Experience.

During a discussion with TGI researchers on the strategy of consumer interaction, a fellow CCAG member was relating an experience she had - her 2-year-old son sadly died from Sepsis, and as a result she has become a very active advocate/consumer in the field of Sepsis research.

She related an incident when she was in a meeting with researchers and in her words “they were dancing the questions around her son’s case’.

She became frustrated and, in her words’, “Got up and looked them in the eye and said” Listen, stop dancing around the bloody topic, I am here to answer the hard questions about my son’s death-So ask away’

My point is - Sometimes people are afraid to ask the tough questions in relation to stroke- I hope not! See my Key Messages.

Now, back to the topic at hand.

My initial response to the question was “It is hard to put into words”, I found it hard to describe the usual signals that Armageddon is about to/has exploded in your head, the inability to speak, the total lack of response in the right side of your body \{my stroke was a Left Lacunar\}.

Also, strangely all these events were accompanied a total lack of pain!

It was after I met a fellow stroke survivor on one of my daily walks that I am now able to describe the feeling of having a stroke more accurately.

He described his stroke in the following manner “It’s like when you go to the dentist, and he gives you a needle in the gum to deaden what tortures he is about to inflict’.It’s that feeling of numbness after the needle, nothingness, you know your mouth is there, but it doesn’t register with your brain.

Then imagine that feeling of deadness down your entire right side.

That’s what my stroke felt like.

Then when it passes, what was left was nothing, no communication between my brain and my right side-but help is on its way!!That’s where the rehab kicked in – I found new pathways so that the ones that were blocked were replaced.

Except Gang, 2 pathways were unavailable-

The one which created my craving for nicotine-BLOODY BEAUTY and the second pathway is to WINK WITH MY RIGHT EYE.

My Key Messages.

Stroke Survivors – Your Lived Experience is unique, precious information for Clinicians and Researchers. -If you are willing to to share, you will be doing something really beneficial for the world.

Stroke Clinicians - Know your Survivors’ boundaries in terms of what they want to share of their Live Experience. Do not make them feel uncomfortable if they are reticent. Respect their attitude.

Thank you for staying to the end, Thrill Seeker, and Fellow Time Traveller, it is a little different to my normal epistle, but I thought it was worth sharing.

Remember keep moving towards Enlightenment-for that is where the answers do bide,

Brian A Beh, Stroke Survivor

Lifelong Member of the Hopalong Cassidy Fan Club

Poet, Philosopher and Child of the Cosmos

Winner "Improving Life After Stroke" Category

Stroke Foundation of Australia 2021 National Awards

Inaugural Chair, Community and Consumer Advisory Group

The George Institute for Global Health in Australia.