“Monday 25th of March 2019 started out almost the same as any other day. I was particularly tired and hadn’t really been myself, but I woke up early as usual, answered lots of emails, took my daughter to school and then headed into work in London, later than usual. I had been travelling extensively for business and was particularly keen to be able to do the school run. Something everyone moans about but I genuinely relished the chance to get to do.
I was at work, in a meeting. Everything was fine, until it wasn’t. The only way I can describe the feeling is that it was like, all of a sudden, I was having an out of body experience that I couldn’t prevent. I was 40, exercised regularly and had a pretty healthy lifestyle – aside from an immensely heavy serving of regular and often, unmanageable stress and the occasional night out with too much gin. However, I worked in the city as a board level director. I had a team to support, endless responsibilities and, working for a start up with a mind of its own and a CEO that seemed to like to change his mind on an almost hourly basis, I was working an average of 14 hours a day with a fairly hefty commute – usually starting at 5am to try and get through the ridiculous stream of emails that had come in whilst I was asleep from one of the numerous time zones we had offices in. Balancing being a single parent and getting enough time with my daughter and doing all the things both parents should do on my own, was tough too. I felt under enormous pressure and there was always a feeling in my heart that I could do more, that I wasn’t quite enough. I was constantly stretching myself because of the pressure I felt and it was a painfully lonely existence at times. Caught between two worlds and desperately wanting to just be a mum and do the things mum’s do for a while. I was exhausted.
It was around midday. Suddenly, I struggled to think with clarity. There was numbness down one side of my face and the sight in my left eye was affected to the point where I couldn’t really see out of it. I tried to make sense of the situation. Ever the problem solver and practical thinker, I assumed a bad migraine was coming on and planned my resolution. I had suffered with headaches since a terrible accident in 2008. An accident that caused me to spend 7 years as a critical care patient, fighting for my life and bouncing from one intensive care department to the other and getting an almost weekly ambulance ride to rescus. This is a key indicator for what was about to happen to me, as my health has never been the same since and I am (from a physiological perspective) particularly vulnerable to illness and stress as a result.
I told my colleagues, which included two close friends, that I had to go home. When I returned to collect my bags and laptop, which I had forgotten, they assumed I had received an emergency call – perhaps from my daughter’s school. But very soon, it became apparent to them that something far worse was happening and it was happening to me.
Over the next 10 or 15 minutes – I can’t recall how long – things declined rapidly. I collapsed in one of the spare offices and injured my back. I got back on my feet, but the numbness was getting worse. After a close friend spent several minutes pleading with the person on the other end of his 999 call to send an ambulance, the rapid response paramedic arrived and made a very quick decision to get a crew and an ambulance out. They asked me to raise my arms – my left dropped dramatically down whilst my right stayed up – this was bizarre to me, because it was so out of my control. My body was no longer listening to my brain – or something was blocking it. I was asked easy questions, but I didn’t know the answers; my middle name, date of birth – the year – basic questions I knew but couldn’t find the answers to. My ability to speak was impaired and I was slurring my words. Something was terribly wrong. But even at that point I hadn’t even considered that a blood clot might have formed in my brain and was causing damage to it every second that passed.
I was quickly transferred into the ambulance, terrified my colleagues may see me being rushed out on a stretcher, where I was told that I was having a stroke and that they needed to blue light me as fast as possible to the closest emergency department. The paramedic was incredibly kind and warm, explaining that she knew it was frightening but that the stroke team were waiting for me in rescus at the hospital and I would be getting the immediate and critical care that I needed. I’ve been in the back of an ambulance many times. Too many times. But my experiences in them had usually been when I had been completely unconscious. This time I was aware, and I knew that there was a very real risk that I could die. It was terrifying. I squeezed the hand of my friend – I’m certain that at this point I went into shock. I’m surprised I didn’t break the bones in his hand I held on so tight and unluckily for him I was using the one I could still feel and had strength in. He squeezed my hand tightly back. I’ll never forget that moment.
We arrived incredibly fast. I was taken beyond the big doors of the resuscitation unit in emergency – a place you only go when things are very bad. They attempted to cannulate me several times but – due to years of serious illness – I no longer have viable veins and so they needed to use a special machine to guide the needle into one and they had to do it fast. You could see things were time critical. “Time is brain with a stroke” I remember one of the specialists saying, effectively spelling out that every second you do not receive treatment your brain is becoming more damaged. I was given a consent form to sign. The choice was, be thrombolized immediately to dissipate the clot in my brain, or risk an almost certain death. The thrombolisaton/clot busting drug carried plenty of risk too – bleeding internally for one. I signed the paper, was immediately administered the drug and was rushed to have a brain scan. Everything went by in a blur. It was impossible to process what was happening, especially given that an enormously traumatic event was taking place in my head. I cannot praise the emergency services and rescusitation/emergency team enough for how I well I was looked after.
After time in emergency and being stabilised, I was moved to the stroke ward to start my rehabilitation. The fact that my office was so close to a big London hospital with a specialist stroke team on call and that my friend had recognised quite how serious things were, meant that I lived to tell the tale, however, I’m not going to lie – it was brutal. On the stroke ward is where reality really hits you and you find out what the stroke has left you with. The next day I woke up, thankful – for a second – that it had just been a bad dream. Until…I went to move, I opened my eyes and – nothing. The sight in my left eye gone and I was completely unable to feel anything down my left side. I was completely paralysed on 50% of my body and because of that, I couldn’t really move at all. The realisation that it was real was sickening. How would I hold my daughter again? How would I work? How would I support her? I lay there and cried for at least an hour until a stroke nurse came to take some blood and I was jolted back to reality. You’re given no handbook, no guide, no warning or preparation. Life keeps on moving whilst you lay there trying to piece together how this happened and how to navigate yourself through the mess you’re left with.
I couldn’t have possibly imagined how hard the next several months would be or envisaged how enormous an impact something like a stroke could have on, not just your body, but on your mind too – actually, on everything. When you get home from the hospital it’s a terrible shock. I lay in bed for weeks with no help and my mum quickly became my carer, a role neither of us had planned for. I couldn’t do anything for my little girl or for myself, although social services/the rapid response stroke team came to adapt my house to help me get about a bit easier. It has been a long and frightening and often very lonely process. You have so many questions and nobody seems to have any answers, because every stroke and every person, is different. No recovery is the same and as you improve physically, there’s a whole host of invisible symptoms that you suffer alone with. It affects the people you love immensely too. My daughter, my parents, all suffered with me. That’s hard to digest because you’re powerless to stop it and you’re incredibly vulnerable too.
I didn’t eat anything for a long time. Like my appetite for life, my taste for food had gone. I didn’t want to leave my house. For a long time, staying warm and engulfed in my own fear and vulnerability felt like the safest and most comforting place to be. As people got back to their lives, I felt more and more detached from mine. I was terrified of everyone and everything. I took the drugs I was given by the doctors and let life pass me by. I know now that I was still in shock. My work got the message that there was no way I’d be coming back. They gave me no support whatsoever, even though I had given so much of myself for my work. I have felt loneliness unlike anything I have ever experienced since I had my stroke. When something massive happens to you, you really feel not having someone to go home to that loves you no matter what. No second income to shoulder the financial responsibilities when things get tough, nobody to help with the parenting whilst you fight and recover, nobody to talk to about your darkest fears and pain or to just give you a cuddle. I have a wonderful, albeit small, family that fill so many gaps with their love and support, but there are some gaps that just cannot be filled and I was incredibly conscious of this throughout the experience. But it helped me look to myself, as I always have. It helped me survive.
It’s been 6 months now since that day. In a lot of ways things have got easier as I’ve worked hard to move forward, embrace life even more than before and face my stroke with determination and strength. But in many ways things get harder, in ways you couldn’t possibly predict. Everyone else gets back to their lives once the shock wears off and you just feel left in this space between your old life, your new life and everyone’s expectations and perceptions of you in the midst of your own personal nightmare. I didn’t know how to talk to people or to say I was falling apart. I was trying my hardest, but it just didn’t feel like that was good enough. I could no longer pretend I was okay but as I worked hard on improving my mobility, many people expected me to behave and act the same way I had before, the way everyone else does – but I was recovering from a massive brain injury – I didn’t know how to navigate my way through basic social situations and I was frightened about being in large groups, even if it was people I knew really well. I had good days, bad days and terrible days. Days when I would have fatigue, pain, panic attacks and anxiety so bad, that I had to drag myself back into bed, sometimes for days on end. One day, probably when I felt at my lowest point, it took one seemingly (to others) little thing and minutes later I was on the ground, outside the school, in front of my daughter and numerous other people. My blood pressure through the roof and my heart pounding in my chest. I hadn’t slept in days and I was really suffering. Whilst it was mortifying, I learnt from it. I had to slow down and not apologise for that and I had to stop feeling bad for things I had absolutely no control over. It’s at times like these that you appreciate the little acts of kindness that sometimes happen. It could be a kind word, a smile, a hug, a text – in these dark moments, kindness and understanding means everything.
I didn’t dwell on any of this – I realised that I was only human and that I’d been through hell. I spoke to my doctor and to my physiotherapist who both reminded me how hard this process is and how I had to give myself a break. I was human and I had experienced something terrible. Why was I beating myself up over things that didn’t matter? Day by day, step by step and with tenacity, determination and an enormous gratitude for all the wonderful things in my life (focusing on the good and not the bad) I looked forward, I went to the gym, I did double physio sessions, I walked (and fell over) lots. I started going out to things I felt comfortable going to – I may not have stayed long but I tried. Some days I could face it and other days I couldn’t, some days the pain was really bad and some days it was easier to bear. I stopped beating myself up about my recovery and reminded myself of everything I had been through and overcome and knew that, those people worth having in my life who loved me for me, were still waiting for me. I stopped feeling like I was letting people down by not going out and remembered what I had been through and how important it was to put my health first. Sure, I received a few less birthday cards – my circle had got a tiny bit smaller – but I was still incredibly grateful for everyone in it and I was grateful for the lesson. I started to remember how hard I had worked and all the times I had struggled to even sit up in bed and how far I had come. The first time I moved my toes in the hospital, the first time I could grip with my left hand, the time I went to the bathroom at night for the first time without falling and the first time I went without my walker. I also remembered how much I had done for others and how I was always there for people, helping them out. I would have done anything for anyone – I still would. I was proud of the person I was and, more importantly, I knew how proud my daughter was of her mum, which was everything to me. You don’t recover from a stroke in weeks, or even months – I know that now and I may spend the rest of my life rehabilitating and recovering, but I am so grateful to have that chance, when so many people that have strokes do not. Stroke is a leading cause of death and disability in the UK and more and more younger people are facing it. Yet so little is known and understood about it. Even those of us who go through it learn as we go.
For me, I guess, the tough part is that everyone expects that you’re back to you. Once your mobility improves there’s a perception that everything is back to normal – but it’s a brain injury and most of the damage is invisible to everyone else but you – I think I found, and still find that, the hardest part of all. The assumption is everything is fine, but that couldn’t be further from the truth – you just find ways to deal with it, paint on a smile and keep functioning the best you can. For me, the people I love help drive me forward. My daughter and my family give me the support and love I need to keep working hard at my recovery. I know life is worth it – I know they are worth it. They believe in me and that is worth everything.
I am far from the person I was before my stroke. My memory, my tolerance for noise or crowds or stress is massively impaired. My sight never returned and it makes me feel sick a lot of the time and it affects my balance too. I wake up exhausted. I still feel nothing on my left side. I suffer with terrible anxiety and headaches that cut me in half they’re so painful sometimes; all to be expected after what I have experienced. I am rebuilding myself, my confidence and ignoring the sobering statistics and prognosis of people that suffer with this type of stroke. I am alive and I am incredibly grateful for that. I am living my life and I am embracing it. I may be flawed and imperfect. I may be a bit broken. But I’m still here, still fighting, still facing what happened to me. I don’t regret a single part of it – there’s a lesson in everything we experience in life, even the tough things. My stroke made me even stronger, tougher, more compassionate, even kinder and even more full of hunger and ambition for living the best life I can, despite my disabilities. I may have to take naps and I may not remember what I went into the kitchen for (three times), but I’m still here!
In the end, you have only yourself to look to. You can choose to fight, overcome adversity and live a life of gratitude and positivity. Or you can let it beat you. No matter what happens, my stroke will never make me a victim. I still believe, even more so now, that kindness and compassion, love and gratitude are the best things to live your life by. My stroke may have put me through many painful challenges, but it has made me even stronger and I am grateful for that, as I am so grateful for being here to be able to beat it and I’ll keep beating it, every day I’m lucky enough to be here!”