Each moment is precious, and it is never too often to let those close to us know how much we love them
On the evening of Friday October 29, 2015, I returned home from a meeting and typed up my notes. Whilst doing this I noticed a tingling sensation in my thumb, which disappeared. I then got up to walk to the kitchen and I seemed to lose my balance, which I put down to tripping on the edge of the carpet. These small incidents triggered a concern so I discussed with my husband James whether I should call the National Health Helpline for advice. We decided against this because we were going to a family wedding the next day, plus part of me thought I was overthinking things! Yet I still went to bed feeling somewhat unsettled.
Unusually for me I woke up during the night and on the third time at about 3am I found my left arm and leg were not moving as they should. We rushed to Chelsea and Westminster hospital where I was immediately put on aspirin. It wasn’t until 5pm that an MRI scan showed I had suffered a stroke. I was transferred to Charing Cross Hospital and at about 10pm I was strapped to monitoring machines. The worst thing for me was not what had happened to me but the pained expression on my husband’s face. It was a look of fear I never want to be responsible for creating again.
Two days into hospital life and I was restless to see what was happening in the outside world. So I suggested we go to Pizza Express across the road from the hospital for something to eat but nothing prepared me for the shock I would experience as the chill of the air connected to my face and the different sensations it brought with it. I shivered like I had never done before, which was compounded by my mind struggling to make sense of the sounds, the flow of the traffic and the speed people were walking at. I suddenly became aware that my ability to walk had been affected. I was barely moving and I was scared I wouldn’t make it across the road before the traffic lights changed. At the Pizza Express I found it excruciatingly uncomfortable to sit down on the chair.
When the pizza arrived I picked up my knife and fork, but I couldn’t feel my fork to hold it! I hadn’t realised I had little sensation in my left hand. In the hospital it was so easy but now words couldn’t explain the rush of fear pushing at the back of my eyes. I held the tears and with a broken voice I asked my husband ‘Can you cut my food?’ Two days before this to cut my food was such a normal everyday occurrence. I was now beyond frightened and completely out of my depth. So I pushed it all back into the deepest part of my mind and closed the door.
It would be sometime later I recalled a premonition I had, which I wrote in a letter six months earlier where I explained that if my blood pressure remained unregulated, as it had done for 18 months, I feared that I would have a stroke or a heart attack.
I was discharged from Charing Cross stroke unit on Tuesday 2 November, I left with information that indicated for me that risk of me having another stroke within the first three months was high. My anxiety was now fear especially because I was also aware that being of Afro-Caribbean descent, I was already twice as likely to have a stroke as someone who is white. Friends and family urged me to abandon my old ways, and slow down. Take it easy they all said. It was as if it was part of a chorus and it rang in my head like well rehearsed harmonies. I couldn’t imagine a slowed down life and doing nothing was unthinkable in my mind.
When I returned home most nights I would wake up in extreme pain to find my hand cramped like a claw. My left leg was so painfully cramped and even with pillows to support nothing eased it – it felt as if the blood supply had been cut off. This reduced my walking ability, I was unable to fully straighten my back and I was slightly stooping my head whilst walking. I seemed to have constant feeling of pins and needles in my left hand, which made me feel unable to feel my own hair. I also struggled to operate the clasp of my earrings or necklace. I was also noticing a weakness at the left side of my mouth and left eye that made them both dribble. Another after effect of the stroke was my memory I was struggling to remember basic things it was as if my brain had gone into reverse mode. Many mornings brought tears of confusion, uncertainty and again fear into my mind.
I felt annoyed when I was told by the hospital that these symptoms were normal because I hadn’t been warned to expect this. To say I felt horrified is an understatement.
After this I was determined that I would get the stroke to work for me and not the other way around. And as I sat at my desk and the first tear rolled down my face I knew there were deeper post-traumatic feelings associated with having a stroke. So I made a promise to God that “If you give me all that I need to continue with my creativity, then I will take it wherever you lead me.” This is an agreement I still honour.
I reassessed my life and I recognised and acknowledged how fragile life really is and that it takes only seconds for it to change, sometimes beyond recognition of what you had previously.
I felt that I had sat holding hands with death and that’s OK because it made me resolved to push that extra mile, to work harder to achieve, to forget the doubters and the haters because they have their own insecurities to manage and work out. I knew that the after effects could have been an awful lot worse and that in some respects mine was a mild stroke but it didn’t feel that way in my mind. So I started to move on.
I relocated the poems I’d been writing gathered them together and published my first book ‘It’s Your Time’ and I finalised the recordings of unfinished tracks to create my first album ‘How Could You?’
What I would say to readers is: To feel the fear and do it anyway, it usually isn’t as bad as the doubts and fears that play out in our minds.
Also, why not have a high five for my legacy?
I lived a hectic life (and still do!) in Notting Hill Gate, London.
Prior to suffering a stroke most mornings I was up at 5am and swimming by 6am. I managed several rental properties and travelled frequently with my husband James. I also made time to write poetry, teach myself piano, write and record songs, learn to play the drums, and I was an active participant in various choirs.
In the lead up to suffering the stroke I was working on a major upgrade of a property, which was so problematic, it was causing me not to sleep properly and my mind was full of the anxiety as to whether the workmen would turn up and complete the agreed tasks. I was conscious that my blood pressure was high and had been for 18 months; I wanted it to be controlled.
The night before the stroke I was preparing to go to the wedding of a dear niece in Manchester but it wasn’t to be.
Post stroke was the start of a different life for me. A new me!
I realised that it was important to realign myself very closely to what was truly my passion, my creative muse and so it was important to finish the projects started but not completed.
Later in the year, while in Paris in December for my birthday I felt particularly vulnerable both emotionally and physically. This was highlighted when I decided to have a go at playing the piano at a hotel where we were dining. I noticed that the numbness in my left fingers where making it extremely difficult (and still does) for me to feel the keys but I persevered and I pushed through this uncomfortable sensation.
In January 2016 I decided to restart singing and at my vocal session I heard a cracked disjointed voice that I didn’t recognise. It was so painful the sound really was indescribably and I felt frightened. I thought I would never be able to sing again and when I got home I was inconsolable. This was making my journey tougher. I struggled to remember the words and chords to my own songs or hear those trained musical intervals. The challenge here was could I get my memory back!
What made things even more difficult was that I didn’t receive any physiotherapy help for the first six months following my stroke. I later discovered this was because the team that needed to make the referrals wasn’t available at the weekends when I was admitted. So I went back to swimming and started to retrain my brain using the Einstein app downloaded from the apple store. This taught me the importance of being persistent in trying times.
By this time my book ‘It’s Your Time’ had been published, my album ‘How Could You?’ had been completed and I decided I wanted to start performing again. I did this by going to a Sunday afternoon open mic session. In pain, I sat at the piano with numb fingers unsure if my memory would work or freeze, I then heard friends shout ‘You can do it Sandra’. With their support I dug deep and played the first chords and started to sing. I can’t thank them enough.
I’ve been raising money and awareness each year for Different Strokes particularly in Stroke Awareness Month in May. I also held my first event for International Stroke Day in October 2017. In addition I’m a stroke advocate and, when invited, I take part in training sessions sharing my story including a 10 minute video, with people in the National Health Service who are working to obtain a Care Certificate as part of the Central London Community Health Care Trust.
My faith has taught me two valuable things that good things can come from painful experiences and to make sure you go for it and don’t live with regrets.