Sometimes I think the best way of describing a seizure like the tonic clonic I had in May, is like having a stroke, plus a million more, because six months later I’m still struggling to talk, walk and write.
The words are there, but when I’m typing my essays for my MSc assignments, I struggle to form the sentences.
When I talk, sometimes I cannot finish my sentences and I struggle because I can’t find the words in my brain to finish them.
Before that dreadful seizure, and subsequent focal onset seizures, I was weeks away from qualifying to become an English teacher and now I can’t even write my own name.
I’m limping again, because I have a musculoskeletal injury in my left leg, which now appears to be permanent; I have to take painkillers and try to stay active when I can. Sometimes – like this morning – it seizes up and I can’t walk at all.
And this is ALL from epilepsy.
The NHS offers us no rehabilitation; my Practice Manager told me this week that it wasn’t the responsibility of her GPs to know anything about epilepsy when I made a complaint; my University and Student Finance offer some allowances but I have to constantly fight for this: During this module, we have had an exceptionally unhelpful Professor (giving obviously copied and pasted feedback and not replying to emails, not interacting with the class forum (it’s an online course), and while the rest of the class have also found it upsetting, I am the only person who has complained because she was unhelpful while I was in hospital. Thankfully, the Disability Centre chased her with a pitchfork but sometimes I do lie and wonder: if you could see my disability, would life be easier for me?
Who is fighting for me?
I’m so frickin’ tired.
On a plus note, I had my first assessment with the Personality Specialist Team (which I of course, asked the GP to refer me to back in February if you remember. See, I have to do everything myself!)
I’m going to be honest, as much as I am happy that it went well, I am disappointed that the Therapist wasn’t black…
I’m still having nightmares about the psychological impact that losing my job has had on me – this includes the severe racism. I am going to talk about the anger, the trauma, and the damage that has been caused to me. I would have preferred if the Therapist had been the same skin colour as me, to be able to empathise. He had a Black medical student sitting in with us – she got everything I was saying, I could tell by her face! She didn’t look shocked by anything I was saying about what was said to me while I was bullied at that school. She had that nod of understanding, whereas the Therapist couldn’t control his excitement and shock, and he also said:
“are you sure that’s what they meant?”
Over the Summer, I discovered Guilaine Kinouani, a Therapist who created Race Reflections, and you can also find her on Twitter (which is how I found her).
I’m in awe of her. She’s moving towards the same direction I want to be walking towards and I’ve already reached out to her. I’m inspired by her passion for working with minorities, which drives her career choices and we’ve spoken about the fact that during this module I’m studying – Social Psychology – I’m struggling to find clinical studies on ethnic minorities and I’ve been marked down for using resources and studies that aren’t scientific. However, Psychology is incredibly racist and everybody knows it! The majority of scientific studies are Ethnocentric, particularly Eurocentric (which my current Professor actually disagreed with me on, because she found one study on Black people and faces, but didn’t cite it….. God help me!) Western Psychologists just decided that they couldn’t be bothered to go anywhere for their initial experiments and now one culture is the standard. Anyway, Guilaine has created this incredible model to explain the impact of racism upon the body and mind, however I could never use it as a point of reference in my work, because it’s not a “scientific paper”, however it is based upon scientific fact. This model beautifully explains not only what I went through while I was going through the experience, it also perfectly explains what I’m still going through now. You should definitely check out her website, her work is like no other!