Thursday, 18 July 2019

GUEST POST by Taylor // Strokes don't just happen to older people

A self of me with a
paralysed hand
I wake up, and I mourn my health. I go to bed at night, and I mourn my health. It’s debilitating, frustrating, and I have no choice. 

My name is Taylor. On October the 31st, 2005, at 12 years old, I suffered from a right cerebral ischemic stroke or an MCA (Middle Cerebral Artery) CVA (Cerebrovascular accident).

This subsequently resulted in a severe Acquired Brain Injury (ABI) which left me permanently disabled. I suffered from left sided hemiplegia, spasticity, dystonia, along with cognitive and emotional deficits. Many things have improved, many have not. Due to the severity and the type of stroke I endured and my age being a huge factor, I wasn’t eligible for surgery or immediate intervention being so young. Over a decade of therapy, neuroplasticity, and medication that only had temporary relief and serious side effects, extreme fatigue and constant plateaus, I had to learn to accept the fact I wasn’t going to make a full recovery.

My ABI was caused by a genetic MTHFR (methylenetetrahydrofolate reductase) gene mutation that I am a compound heterozygote for (don’t worry, i’m still trying to figure out what that means). The hospital took months to figure out why it happened and only after a specialised fMRI they had the answer. So no, strokes don’t just happen to older people. 

I like to think that a strength of mine is sharing my vulnerability in order to allow myself and others to heal. The most tiring thing for me about having a disability, and the most difficult thing about suffering from internalised ableism, is that my mind doesn’t match up with my body. My cognitive functioning does not match up with my reality, and because I have been bought up in a world that tells me I am useless without achieving societal norms, it means I believe I am worth nothing but a burden on everybody around me. How do I change this faulty thinking? How do I accept that I don’t need to be “fixed”? I take back my power from those that destroyed it in the first place. 

I was thirteen and attending my high school again a few times a week after I left the hospital and my intensive physiotherapy, speech therapy and occupational therapy regime. I was attending outpatient rehab services for ongoing therapy. I was utilising a wheelchair and had countless mobility aids, often arm and leg splints. I had a falling out with my childhood friends, I was a precocious child and having a life altering experience emphasised that tenfold, so attending school was isolating and painful.  

in my hand
I was a fragile, newly disabled thirteen-year-old who was different, and because of that indifference I suffered at the hands of significant peer abuse. I felt the way people made me feel, empty. Worthless. Marginalised. Scared. I would attend school three days a week, wheelchair bound where I would be taunted by neurotypicals, sprawling their disabled jokes all over me, soaking me in shame. Throughout the years I was pushed down stairs, had rocks thrown at me, called countless disabled slurs and even had my own “friends” turn against me to merely fit in with their peers. I was ridiculed. I was shattered by the words of those who could never understand the degree of my pain.  

I won’t go into detail, but the next decade following from what i understood was “mere bullying” (my C-PTSD, year’s of therapy and substance abuse tells me otherwise), my mental health took a rapid decline. I was a young disabled person who had serious physical limitations, therapies that just weren’t working, infinite frustration and on top worsening mental health. I started to believe i was merely every slur that came out of the mouths of those who only said the abuse to deal with their own pain. So I took that hurt, and made countless attempts at ending my own life. I guess I’m living proof that bullying can kill you? 

Present day and I’m over a year sober and clean now from my substance abuse and overdosing history. I am medicated for physical pain and mental health issues that will remain for the rest of my life. I have seizures, fibromyalgia, very possible CFS/ME, GI issues, just to list the ones i remember, on top of my mental health and ABI. I have worked on self love and continuing on my journey of healing.

Disabled folk shouldn’t be commended for living in a society that tells us we are worthless, but celebrated and made inclusive instead. Celebrated because the physical pain doesn’t subside, the emotional pain from ableists soaking us in shame never really fades, but we do our best to educate, advocate and protest for our existences to mean something regardless. For us to be heard. Over and over again. How bloody courageous is that? We shouldn’t have to do this and we didn’t ask for ableism to exist yet we continue on doing the work. I want people to understand that just because someone isn’t a reflection of themselves; does not mean they are unworthy. That indifference is nothing to be feared or dismissed. 

Thank you for letting me share.