I Think There’s Something Wrong With Me

Early 2008. I’m in my first position at my job- the one I’m, miraculously, still in- working a reception desk at a training centre. I got my job through a now defunct government employment Scheme for people with disabilities, administered- in Oldham, at least- by an also now-defunct supported employment organisation. 

Sadly, my attempts to explain my disability weren’t detailed enough, largely because no doctors ever gave me enough information to begin with. The last psychologist I’d seen- someone my university sent me to in 2002- had assessed me and written ‘Visual memory / Dyslexia’ in the diagnosis box. There’s a notable lack of detail in this assessment. The Scheme got their copy of this and stashed it in their files. They asked no questions. 

As a result, The Scheme dumped me into a highly complex admin role, in which my responsibilities kept changing, day-to-day, and I was expected to remember tasks or phone calls from weeks ago. This just wasn’t going to happen. Problems arise, my manager and supervisor- much like myself- are pretty unhappy to say the least. 

It’s taken about 3 months, but eventually the manager contacts the Scheme to say, what are we going to do here? We want the best, but this isn’t working out. 

In the time I’ve been working at the training centre, somebody has joined the Scheme, a support worker. We’ll call her JM. JM is subsequently sent in to work with me, to observe my working habits and to look at what can be done to mitigate the situation. 

Of course, so many months have gone by that I’ve learned how to take calls and email simultaneously, how to update Powerpoint slides and how to do other day-to-day tasks. All of this was through trial and error, as The Scheme was notably absent. These techniques impress JM, but they confuse her too. She explains she has a degree in psychology. 

“From a professional point of view,” JM admits, “I find you fascinating.” She’s been watching me type one handed, with- if I may say so myself- perfect spelling and grammar. “Who says you’re dyslexic, Matt? Where has this come from?” 

I explain that, at 16, I joined college, and started to struggle. I was having problems keeping the different projects and responsibilities in mind. Organisation was a big issue. My first college tutor, who we’ll call CB, had a background in learning difficulties, and he felt the problem was dyslexia. He sent me to a support tutor, who ran her assessment and suggested I had ‘some of the symptoms associated with mild dyslexia.’ A little over a year later, I applied through UCAS to a few universities. The UCAS form asked us to put a D in a particular box if I was dyslexic, so I did. (I don’t tell JM my gut instinct was telling me not to do this.) Once at uni, The University of Salford dropped it on me that in order to get support, I’d need a psych assessment. The childhood assessments I had were too old, so they sent me to Access Summit, part of University of Manchester Institute of Science and Technology (UMIST) who formally diagnosed me with dyslexia. 

“Oh, Matt. You’re not dyslexic. I know what dyslexia is, and that’s not what you’ve got. Your problem is with memory. Have you ever had a knock to the head?” 

Yes, I explain. There was a complication at birth. I have this scar on the back of my head, see? 

“Matt, that will be what it is,” JM says. “You need to get reassessed. You need a referral to a psychologist from your GP.” 

I’d always known I wasn’t dyslexic. I’d always felt like a fraud, telling all these numerous employers, support workers and that one psychologist. A penny dropped, right there on reception. I wasn’t stupid. It wasn’t just, I dunno, being both too dumb and too intelligent at the same time. It wasn’t a severe case of doziness. It was a condition. And it wasn’t my fault. 

This conversation, though, reminds JM of a book she’d read- I Think There’s Something Wrong With Me, about a guy who’d been through the NHS after a stroke, a condition with which JM herself had also been afflicted. I can’t remember much of her description, other than “It’s very funny and he swears a lot.” It sounded like my kind of book. 

Of course, at the time, I didn’t have the systems for recording these things. I made no notes of the conversation, other than to book a GP appointment. 

Memory, though- human memory- is a very flexible, fallible function. We remember things when we’re emotionally affected by the situation. Realising I’d been blagged for the last decade, and that I wasn’t stupid, lazy, ignorant OR dyslexic- that was a huge wakeup call. I felt angry that so many professionals had let me down. I felt relieved that someone- a professional, in particular- understood me. I felt invigorated that I had a plan- that I knew why I’d need to be reassessed- that I wasn’t dangerous, wasn’t going to be sectioned for asking for help, and that I’d get the help I needed to get an accurate assessment in place, and support with the many obstacles my memory was throwing up for me. 

It took over a year of GP appointments and sub-standard meetings with half-arsed locums and psychologists who just didn’t know how to do their jobs, but eventually- thanks to JM’s initial prompting- I met a very talented neuropsychologist and got a solid, accurate assessment in place. Subsequently, I spent many years meeting with other NHS professionals, tightening up other techniques, addressing related problems. My last session was in April this year, around the time we first went into lockdown. I believe the NHS have now done all they can for my memory, and my attitude towards it. 

Then, probably around the same time, I was lying awake one night, typically overthinking everything that ever happened to me, and that conversation with JM pops into my mind. The book title. The explanation that marked a turning point, a beginning of a 12-year crusade through the NHS that had- seemingly- now come to a close. Technology has come on a long way since 2008: I reached for my Sony Xperia XZ Ultra, plugged in next to my bed, and opened the Amazon app. I found the book and stuck it on my wishlist.

July rolls around, as does my birthday, and my mum graciously buys a copy. It arrives with a sticker reading:  

To Nick, Hope you enjoy this now out of print (hence ‘pre-loved’ copy) Read. -Secret Santa ‘17 

Shit. I’m a thousand words into this post and I haven’t actually reviewed the book yet, the copy of which I’m (perhaps) the third to read. 

Likely lad TV exec Nigel Smith has it all- the house, the car, the glam career, the wife and step-kids. Unfortunately for Nigel, he also has a brain lesion. This rudely interrupts his morning, one day in 2001, when he finds himself chucking up and not being able to point to his own face. So begins 6 months of hospitals, nurses, other unhinged patients, intensive neuro-rehab sessions and incorrigible, bitter sarcasm. 

It occasionally tries too hard to be funny, shooting off in different directions. In an amongst the zany comparisons, Smith weirdly predicts a 6th Rocky movie. You may also need to be both classically and medically educated to know some of the references. I found Google helped. I can’t remember much of GCSE science, but I’m pretty sure amniocentesis wasn’t on the national curriculum. 

Regardless, ITTSWWM is a humorous, heartfelt story, an f-bomb-laiden love-letter to the NHS, and a fascinating insight to its departments traversed by brain trauma patients.