Carole Pyke

“Each year I make it my duty to acknowledge the anniversary of my stroke, a right frontal lobe infarct (I actually love saying that because it sounds like a swear word). I discovered, long ago, that it wasn’t so much about the stroke itself, but the journey I had travelled since the incident occurred that was worth celebrating.

I now realise I need to up my celebration skills because shortly after the fifth anniversary of my right frontal lobe infarct (that swear word again) I woke up with the worst headache I have ever had in my life (no booze involved). It was a Monday morning and my first thought was of a friend who had had an aneurysm which was preceded by a headache. For a short moment, I wondered if this was the kind of headache she had had.

But as I am a firm believer that things like this are only a temporary glitch on the landscape, I did what anyone believing that this too shall pass would do. I did nothing!

I went to work in a friend’s office and stayed there for the day. I lay my head on the desk intermittently and even spent two hours lying in the car, but the headache refused to leave.

At 8pm that evening I finally gave up and went home. I went straight to bed and there I stayed until late Wednesday morning when I answered the phone to my best friend who said, “I haven’t spoken to you for the last two days, what’s wrong?” I told him about the headache, and he continued “what time should I call back to find out what your doctor said.”  I knew he was going to call back, which to be honest was probably the only reason I made an appointment (I had long since forgotten about a possible aneurysm). At 4pm I was sitting in front of my doctor, who has been with me through every health challenge, and he said the words I really didn’t want to hear: “…we need to get this checked out.” But my blood pressure was normal so how bad could it be?

An hour and a half later I was in casualty, I wasn’t worried as there wasn’t a problem, it was just a headache! But in an hour and a half, my blood pressure had skyrocketed, and a CT scan was required. It was then confirmed that I had a bleed on the brain but that still meant nothing to me.

My blood pressure continued to escalate in the 24 hours that followed but it wasn’t until I was being blue lighted to Kings College hospital that I thought this might be serious, but I still had not made the connection between the bleed on my brain and a stroke.

After seeing several stroke doctors I found myself asking why stroke doctors? I was still thinking that this would pass! But weakness on my left side, my inability to walk and cognitive challenges forced me to face reality. I had had another stroke and yet again my life was changed forever.

Although the same side of the brain had been affected, this stroke was completely different from the previous one. Firstly, there was pain and lots of it, but more significantly my brain worked differently. I couldn’t walk because my brain said we had never done it before and could find no reason to want to. Nurses took me to the bathroom and because I didn’t have anywhere else to go it seemed like an unnecessary skill to acquire and this didn’t change until I came out of hospital the second time.

I also had no real memory of life prior to the stroke. I lived in the here and now and because there was no past memory, I had no frame of reference for emotions like fear, worry, anxiety etc. I had no regrets and really couldn’t tell you much about past mistakes or failures. It was as though my brain was selectively choosing memories. I could only recall things as they related to the here and now and if they were useful for moving me forward. I think I know how a new-born baby feels, born into an unfamiliar world which they need to understand and learn how to live in.

I spent three weeks in hospital, came out for two weeks then my GP called an ambulance and I found myself back in hospital for a further two weeks. I joke that I was doing research of stroke units to explain my stays in three different hospitals and my four rides in an ambulance.

My new normal:

Only 18% of all strokes are bleeds so that makes me in the top percentile. I told a doctor that I was in the top set and he remarked that he had never met anyone like me before. That has become a phrase echoed by a lot of doctors and clinicians.

The after effects of my stroke seem to be different from anything my stroke clinicians have seen:

• I’m not trying to go back to a former self, doing things that I used to do primarily because I don’t remember, but more importantly because I don’t think I want to.

• I often don’t remember faces even if I know who the person is
• Much of my world is unfamiliar and I am experiencing a lot of things as though it was the first time
• I don’t understand sarcasm
• I don’t understand irony
• I find answering open questions difficult
• I think in black and white there is no grey
• I don’t live in my emotions
• I am not attached to the past
• I am unsure about my own emotions

I met a man who described himself as a highly functioning autistic who said he understood me because he thought the same way, I guess that means I’m slightly autistic. It felt good to be understood.

In the face of uncertainty, poor communication between my brain and my legs and additional challenges with my brain and my eyes I am still living my best life. I’m not pretending that each day is easy I’m just choosing to make the most of the life I have. Each day I am breathing and not a guest of the NHS is a day worth celebrating.

In a world where so much is unfamiliar, I am embracing this adventure through the corridors of life. My creativity has heightened, and I have lots of ideas about things I want to achieve and because I don’t know any different, I still believe everything is possible. I don’t have limitations I have obstacles that I know I can overcome!

I know things are different now and with a few exceptions, I am actually happy with the way my brain works. I want to use my new perspective to help others, like myself navigate the challenges that arise when your name and stroke are in the same sentence. I had some ideas I wanted to work on and then by a stroke of luck (pun intended) I connected with Craig and he told me of his vision, and I knew straight away that this was exactly the kind of thing I wanted to get involved with.

A Stroke of Luck puts the stroke survivor back in the driving seat with the support and encouragement needed to push forward and I’m excited about my role as an Ambassador and the lives we will be able to touch and the difference we will make in transforming those lives.”