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My life story
How it happened
I had a fungal infection two and a half years ago in my brain. At the time, the GP was puzzled but suspected a weird dormant infection in my sinuses. Could’ve been from my youth. Could’ve been from south America. Could’ve been from public transport here in London. The cause matters less than the effect it had on my life.
I went on sick leave at work for the first time in… ever really. I was dizzy and wanting to stare into space. I was ill for about a month. It's funny but during that time, I was even having different dreams. You know how in cartoons like the Simpsons when you look inside Homer's head you see black and white Itchy and Scratchy characters doing repetitive things (that are normally violent too)? That was like my dream. People from work doing repetitive things in black and white.
The company I was with gave me severance and I took redundancy.
I was going for jobs just after I was sick (I was a high earner marketeer at the height of my career and quite a big deal on the public speaker circuit) and I'd breeze past the headhunters or HR stage 'cause I looked great on paper, but fail spectacularly when I met with the bosses or the hiring person (who must have thought I'd sent my oafish, clumsy, inarticulate stand-in). You've no idea how hard it is passing yourself off as the great, creative communicator and not being able to string two words together or draw a diagram.
I stopped working soon after.
I took antibiotics to get rid of the infection and the Ear Nose and Throat people "scraped" all the gunk out of my sinuses and stopped me re-infecting myself. But it was too late. The damage had been done. I was brain damaged. Permanently too.
My speaking slowed down and got more slurry. I could feel my articulation going away. My handwriting got more illegible. My driving and cooking got worse and dangerous. I fell over. I fell in the shower. I could no longer shave, peel potatoes, slice bread or put in contact lenses.
For someone who was never clumsy or uncoordinated, I got really clumsy and uncoordinated. Things I enjoyed doing like sewing and DIY were closed to me suddenly. Normally, when you retire, it’s your choice and you get to focus on things you enjoy like painting or bowling. I’ve been denied that.
I had a team of therapists (speech, vocational, physical therapy) who “re-taught” me to do basic things like walk, mount stairs, make the bed and a sandwich, give my credit card number over the ‘phone and so on. There was a lot of preparation and repetition.
I know I am boring and can’t do things anymore. I used to be interesting and “fun to be with”. I was a happy, smart, funny, interesting guy. But I don’t get interested in things anymore. I just focus on the journey not the destination.
But I think the saddest difference between old me and new post-illness me was that all the emotion and empathy went too. I used to be nice and the kind of person who'd feel sad if someone got played or taken advantage of. I'd feel for that pet or child or woman struggling to get on a train with a pram. Now I’d just see them as an obstacle to the journey.
I am in love with my partner of course. He’s everything to me. But sexual love has shifted to the kind of love you feel for your parents 'cause they look after you and protect you. I don't feel like a sexual being anymore. At all.
Recently, I've taught myself to be amused or distracted. You know the difference between laughing at a comedian's jokes and being truly happy? I can now experience amusement without feeling joy. It's not the same but it's close.
The jury's still out whether it's psychological or physical (I think it's physical but I'm seeing psychiatry and psychology medical professionals and brain specialists) but it's real. I used to be "nice", kind and emotional. Now I have Spock-like logic and my smarts and effort let me work out if something's good or bad, but I don’t “feel” anymore. It's a bit like letting your head rule your heart. Without having a heart.
The good news is that I don't have negative emotions either. I don't feel bitter or jealous or angry, complainy or frustrated, even though I would be justified to be. So, I suppose that's the trade-off or good news.
Socially, old me was a social animal who enjoyed company. I was known for biting wit and charm. But recently I struggled to get my words out even though they were ok in my head. By the time I blurted the opinion or funny thing out, the conversation had moved on. I could practice things and get it right-ish but that’s the kind of thing you can’t practice. I had no idea how much social interaction relied on spontaneity. Spontaneity had gone. People passed over me and I became mute in company. Like being in a foreign country and not being able to speak the local language.
I could type on a keyboard but first pass, there'd be a few mistakes in each word. I knew what I meant to type. I'd have to go back and fix each one. I typed gibberish, fixed it so it was spelled perfectly and grammatically correct. If I'd been writing by hand it would have stayed gibberish. Spontaneity had gone there too.
So, I'm in this weird state where I'm still as creative and smart, but just really let down by my basic functions. I think what sums it up is a tale I like to tell. In January this year, we got in the car (my partner drove of course) and went to the Odeon in Holloway to see The Joker, which is quite a "deep" movie. I fell flat on my face getting out of the car, just across the street from the cinema. I bought (successfully) the tickets from the machine. When we got in the auditorium, I struggled to climb two steps. I lost myself and "got" the movie. I didn't feel moved by it, but I was entertained. I eked my way back down the steps and awkwardly got back in the car. That was our date night.
What I’ve got
What I’ve got
The cerebellum is that bit of the brain at the back and beneath that's normally shown darker than the rest. It's the most ancient piece and does the most ancient things like reproducing, walking, balancing, avoiding danger, multitasking, and communicating.
The infection made my cerebellum shrink a lot, but the treatment kept my higher functions ok. I ended up with severe cerebellar disease or shrinkage. Basically, that part of the brain's withered away. It's stopped shrinking now the infection's gone, but it won't grow back. There is no happy ending to my story if that's what you're looking for. It feels like a Shakespearian tragedy.
Cerebellar disease causes a lack of coordination, clumsiness, and sometimes shaking because the cerebellum is responsible for smoothing out and refining voluntary movements.
Unless there's shaking, it's not normally a visible disability. People tut when you're slow. The bus driver isn't patient while you struggle onboard (they don't know they should lower the bus either). Mothers standing while you sit in a disabled chair just think you're being a jerk. I've tried wearing a badge or explaining but I think using a walking stick as a "prop" is the only thing that works.
If I focus on one thing like staying upright or walking in a straight line or navigating obstacles, you'd think I was normal. There are three downsides. First, it's an effort and exhausting. Second, you can't do anything else. Drink while walking? Out of the question. Scratch your head while rubbing your tummy? No. Third, you cannot "react" to new situations. Hurry to avoid danger? No. Cross during a gap in traffic? Probably not.
These are the symptoms of cerebellar disease and how they affect me.
Clumsy legs. If I didn’t focus, I’d have a staggery, drunken walk. Most people see cerebellar disease symptoms like being drunk. Drinking alcohol numbs the cerebellum and that’s what it’s like. Paradoxically, drinking alcohol makes me lose focus and embrace my drunken walk. It’s characterised by an ataxic, wide-based, staggering gait.
Clumsy arms. I have great difficulty with targeted movements, like ironing, sewing, DIY or even getting a key into a lock. (Shaking, which I don’t have, is worse. Here, movements that you mean to do that require accuracy get interfered with by shaking.)
Weirdly, strength isn’t affected. I can’t carry or move heavy things not because I can’t manage them rather because they put me off-balance. Light things don’t. I need to keep one hand free for balance as I walk so double bags are out.
Cerebellar disease does not cause the loss of any single function but instead causes all motor responses to be messed up. Cerebellar disorders are often spread around inside the cerebellum and the patient normally presents a “symmetric ataxia”.
Ataxia means lack of coordination and that normally manifests itself three ways. First, there’s general proprioceptive ataxia (sometimes called sensory ataxia). Proprioceptive ataxia symptoms include problems with balance, frequent falls while walking, standing or getting in the shower, uncoordinated movement, like not being able to walk in a straight line, clumsiness like dropping things or bumping into furniture. Second, vestibular ataxia. Symptoms include blurred vision and other eye issues, nausea (none of which I have) trouble walking in a straight line (which I do) and vertigo, or dizziness. Those last two are interesting. When I walk and look up or around, I feel spinny and unstable like you do on the roof of a building. Third, cerebellar ataxia (often called motor ataxia). This causes the frequent stumbling and lack of coordination, but also gives you trouble eating and swallowing and causes slurred speech and changes to your voice. That last part is what killed my career the most.
Cerebellar disease gives me that gait and means I can’t regulate the rate, range, or force of a movement. I can’t judge how far away things are and miss things by overshooting or overcompensating. Think breaking your dominant hand and having to do stuff with your other hand suddenly. It’s called dysmetria. In my case, dysmetria means I overcompensate and exaggerate in general and how I move my limbs to do all tasks. That’s responsible for missing shelves, breaking dishes and coming down heavily on the loo seat. In our house, we have a rule that says I can’t put things on or retrieve things from shelves above eye-level. It’s just too risky.
So, I can’t do or even learn to do basic human things but my “higher-order” functions are fine. That is especially cruel.
I always think or wish the brain damage was more unilateral and not so localised. That way my disabilities would be more general and match each other. I’d be incapable of decent walking but not be frustrated or full of overthinking ‘cause I broke that glass. I’d have slurry speech but an imagination that was limited too.
I have literally thought about my physical limitations every day for about two and a half years.