Simon’s Story – Stroke at 49

“April 2019; I am 49, working as a freelance designer and art director from home.  My main clients are food, travel, and sports magazines. I share custody of my two little girls aged nine and five with my wife – we are separated but get on really well.

It’s Sunday night, I’m getting ready for work on Monday. I decide to watch a film in bed when the headache starts – it feels like thunderclaps in my head.  I feel awful and this goes on for about an hour and a half until I eventually manage to drift off into sleep.

Some hours later, I wake up.  It’s light outside.  I go downstairs to get a glass of water – I feel really weird, but I am just so relieved the headache has gone, so I get back into bed and try to sleep it off.

I sleep for another hour and then get up to make coffee and start my day.  Something still isn’t right and I feel bizarre like I am not in my body.  I go to my computer to try to start to work but I can’t remember anything about how to use it!  What are my passwords?  I think about phoning someone, I pick up my smartphone and that too seems so alien.  I just don’t know what to do with it!

Luckily, my mum, who lives in Devon calls me.  I don’t know what we speak about, but she must pick up that my responses sound very odd.  She gets off the phone and calls the ambulance, and within ten minutes they arrive at my house.  They quickly take me to the nearest hospital where I have various tests.  My sister then arrives at the hospital.  I am confused about where I am, what’s going on and why my sister is here.  I keep looking at my phone and wallet – I just can’t figure out how they are different from one another.

I am put on a ward and the tests continue – ECG’s, blood-tests, etc.  The ward is noisy, I lay there on the bed, dazed and confused.  The following morning, my wife (who has been working in France) arrives at the hospital.  I can’t figure out why she is there.  That morning I realise that I can’t feel anything on my right-hand side and that I have lost 50% vision in both of my eyes.

I am moved to the stroke unit at a separate hospital, and even then it was a few weeks before I truly realised that I’d had a stroke. It also becomes apparent to me at this time that speaking is a problem, I have something called aphasia.  I don’t know and can’t say my own daughter’s names. I don’t know the difference between an apple and a banana.

I was in that stroke unit for three weeks and then I was discharged, on a Wednesday.  On Thursday, the discharge team arrive. They provide me with care, speech therapy and physio. I can’t make myself a cup of coffee.

Another six weeks pass by, my right side and eyes are still affected.  I can no longer drive.  Slowly, and in dribs and drabs, my speech starts to return. I practice all the exercises set by the rehab team again and again and again. Day in, day out I just keep at it.

Because I am a designer and artist I really want to draw again. I realise that I cannot see anything from the centre to the right of a page.  It took ages for me to recognise that when painting people, I was painting over the eyes I had only just created. I got to work retraining myself, working from right to left to avoid these issues. Repeating the new way, over and over again, until it became easier.

I still lose my train of thought easily in conversation. I try to write everything down now.  Being a freelancer – I find doing emails is really hard.  My aphasia means it’s hard to decipher words.

The people around me have been fantastic. Weirdly, I haven’t found recovery a chore, and I have seen it as a challenge! I’m usually working on it for a couple of hours a day until I get tired.  I didn’t actually realise I was improving until I would see people I hadn’t seen for a while.  Friends would tell me – “Your words are much better.”

Mostly, I feel grateful that I am here and recovering.  My life changed in that one moment.  I am finding my “new normal”.

I approached Different Strokes to get myself back into freelancing again.  When they came back and talked to me about doing the artwork for Reclaim 2020 it felt great. Doing something for stroke, meant that it has felt really personal.  I really didn’t understand the impact of stroke, until it happened to me.  A lot of people think it’s a physical injury or speech and don’t understand all the other ways that stroke impacts your life.  I feel proud to be part of designing the artwork.  When I started working with the photographs of stroke survivors and painting them or looking at them on my screen, I didn’t just see them as people and I saw them all in a new light like we were all in the same club, I wanted to help them all out.

I really love the idea behind Reclaim 2020 and celebrating goals and achievements. For me some of my own biggest achievements in recovery have been the ordinary things that I took for granted before; like having a conversation with a stranger about the news or a film,  going to a cafe and ordering a coffee, being able to find the toilet paper in the supermarket – these small victories are helping me to reclaim my life.

Sometimes my aphasia causes some funny situations. I was looking at a new house with my girls recently. We entered one property and the estate agent asked me to take my shoes off.  I knew he meant shoes, but every time he asked, I kept responding “You want me to take my clothes off?” he said “no, shoes”, but I still kept responding “ You want me to take my clothes off?”. Eventually, my nine-year-old said, “I am sorry my Daddy has had a stroke, just ignore him”.

In 2020, I want to continue reclaiming my speech – it has improved so much but there is room for more!  I really miss reading too – it would be amazing to be able to read a good book again!

About twenty years ago I used to paint portraits of people and animals, but I stopped when art became my job.  After my stroke, I returned to creating these portraits and I have painted sixty in six months. That has been a positive aspect; painting portraits again. 

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