Make May Purple: It’s Okay To Not Be Yourself Post Stroke

Posted on 3 min read
girl looking on in thought wearing conquer stroke and strong af pin badge
To mark the end of Stroke Awareness Month I wanted to Make May Purple with a cessation of time that never really takes a backseat in a stroke survivor’s world (I had a stroke, if you didn’t know! I also hope sarcasm translates just as obviously.)

Post stroke is an oblivion of why and how and what next. It’s a life shaped hole where normality, good health, and an unscathed brain used to nest; paralysing to the mind and the body and if you listen to the over-ticking of .your own discouraging and often forgetful thoughts, a smidgen of your soul. Opening the front door of your home-home and not hospital-home is a new borderland of fear and apprehension and uncertainty. Putting the working foot forward with the dormant one drifting behind with a trailer of physical limitations, emotional instability and a weird state of limbo attached to the back.

The stroke itself isn’t the painful problem, You sail through that surprisingly effortlessly without feeling the impact of your kinetics quite literally shutting down; but I guess you have no choice in that matter. It’s the aftermath that brings the overload. It’s knowing a part of your cortex has died and feeling like your identity has, too. Here you are, with a sudden burden of change. Your blood decides to stop flowing and transports that scarcity to the rest of you. Your limbs, your control, your sense of freedom. Coming to terms with this new dysfunctional beginning isn’t an easy ride. Neither is being trapped in a body plagued by fatigue, stupor, neurotic sensations, and a constant state of panic, anger, and sorrow.

I remember so vividly screaming at the top of my lungs towards my mum. It was around mid 2011, a few months after my stroke. Where a sudden switch had flicked from embracing this fresh lease of lucky to be alive, to anxiety so bad I was locked in. I don’t even recall what caused that final blow up. All I know is I was too hyper aware of my sensations and the slightest tingling twinge made me adamant it was happening again. I couldn’t speak. I couldn’t breathe. I couldn’t stand. The only thing I could do was hysterically exclaim I need an ambulance resulting in sitting in A&E for four hours as I gradually but steadily regained sentience and was brought back down to earth.

I was fine, of course. It was just one of many massive panic attacks. That only improved when I attended regular Neuropsychology therapy sessions and grew into someone who has mastered the difference between my stroke affecting me long term and my stroke having that dominating hold over me. I’m over the feeling sorry for myself. I’m over the obsessive worrying. I’m over lashing out to people whose fault it isn’t. I’m over being so tense I couldn’t sleep at night. But let me tell you when I say almost 9 years later that period of looming antipathy is still hovering waiting to attack when the defence drops, the mask slips and the questions of ‘when will I be found, picked up and delivered some fortune’ appear; like a queen bee awaiting honey.

How much damage is done? Will my life ever be same? Will I still be able to achieve my dreams and my goals? Own a house? Earn enough money? Get married? Ever be fully independent? Have babies without fearing death? Is my life expectancy shortened? Does anyone even care to understand?  It’s those that creep up and crash into my road to recovery when I least expect it.

The thing is, I am a different person to the one I was before. My system is malfunctioned. That’s a stone cold fact I now proudly own but it doesn’t have to docket me a victim. It means I’m a trooper, a survivor. I’ve developed strength and resilience I never knew I had. I’ve restored and rebuilt. I’ve adapted to the updated version of my unforeseeable but reframing experiences. I’m topsy-turvy but with an improved outlook on empathy and wisdom and gratitude and just purely living for the present. And you can too.

What I’m trying to say is it’s perfectly normal to feel short of that semblance of solidity. It’s okay to feel unsure and scared and tearful. Those feelings are completely justified by the stroke storm that spiralled into your life, your routine, your plans and erupted into volcanic upheaval. The trauma to your brain was literal, so it makes sense that it’s perturbed mentally as well. Essentially, you’re mourning for your old life. The fit and active, sociable, attainable,less isolating, misery, pain, and struggle free life. Don’t discredit yourself for allowing that unnerving introspection to rear its head and pop in and say hello but be aware of when healthy becomes unhealthy and rational becomes irrational.

I’m at that point now where I don’t remember what it was like before. I’m so accustomed to my quivery eye, my deadened left hand side, those funny whooshing, creeping sensations, and my central pain that I dread ever having to revert back – because that’s who I am. That’s who stroke survivors are. We’re an abstract painting of cognition, each graphic representing a time we’ve overcome the worst.

Because brain damage isn’t always an accident on the motorway and a coma for 6 weeks. It isn’t injury or crime or disease. It isn’t always visible to the eye and it isn’t an invitation for pity.

It’s me. it’s you. It’s us.