A Career, a Business and a Rare Disease

Many of you lovely folk have been following my journey on here for a while. From being colleagues, acquaintances, contacts, friends or maybe just seeing some of my oddball business posts.

I usually try to get some of my character and nature across, which can be tough and risky on a platform like LinkedIn. Especially when you have a character and nature that tends to blend darkly comic wordplay and a rebellion against unnecessary corporate nonsense.

Today is Rare Disease Awareness Day. Now don't worry, I'm not going to keel over any time soon - it's nothing like that. I do have a rare condition though, and while this post may risk the "Keep that nonsense to Facebook" wrath, I'm writing about it because it's had a direct impact on my career, the way I work, how and when I can work. I've got a genetic, life-long condition that's been a massive pain - because of the massive pain it causes.

I have what's called "Klippel-Feil Syndrome" or KFS for short. Klippel-Feil Syndrome is a rare bone disorder distinguished by the abnormal fusion of two or more bones in the neck. It's a lot more than that though, and despite all the madness I'm away to describe I actually have it easy compared to most people with it.

A couple of fused bones? What's the fuss? Ah, well... this is where it gets odd. I've got so many fused bones in my spine that the specialists can't actually tell how many are fused. Last count was that I had so many fusions that I was missing nine discs. NINE. My neck has three vertebrae fused, then two, then two, and my lower back, well... scans and x-rays make it look like someone's unearthed a fossilised dog poop. It looks horrible, and the specialists don't really want to look at it - and certainly don't want to get their hands dirty in dealing with it. I've got the turning circle of a bus with a buckled wheel and it all makes daily life pretty uncomfortable. I mean, look at THIS:

That's the state of my neck. There's even a Thanos looking dude at the bottom of it. There's the added fun that I had to have further fusion surgery to fix a natural instability in my neck. See the wire in there? That was put there by the esteemed Mr Sam Eljamel, Dundee Neurosurgeon in 1999. The reason this image exists, and how I got the KFS diagnosis is that Mr Eljamel was the subject of a BBC investigation (https://www.bbc.co.uk/news/uk-scotland-45295575) as he was essentially struck off the medical register for harming a large number of patients; removing wrong parts, opening them up and not completing surgery, leaving it to assistants to do, etc. Eljamel somehow removed a tear duct instead of the targeted tumour on one poor lady. He's vanished and was unobtainable - BBC tried finding him in various places around the world, including the USA where it seems he didn't even finish the medical fellowship that he needed to be able to carry out his move to UK and do the surgeries he did.

I didn't know there was a wire in there until I was in an MRI scanner, as a result of investigating my neck due to the news on the man who'd secured my head to my body. I'd just had an X-ray beforehand, and was in the highly magnetic machine when a lot of shouting happened outside from the radiographer that had just seen my X-ray images. Mr Eljamel had told me there was a non-metal braid in the fusion. Thankfully it was a non-magnetic wire, otherwise I'd very possibly have been killed off by that machine. I still wonder why it seems to trigger every airport security alarm though. Maybe I just look shifty. Perhaps because my head is secured to my body by a guy I wouldn't now trust to wire a plug. Thankfully there's a bone graft in there too though. Bone taken from my pelvis (which hurt a lot!) is holding my head in place. So when people say I don't know my head from my arse, I can't really argue. I suppose I should thank Mr Eljamel for the unnecessarily large scar on my neck, with dot marks from the thirty five staples he used to close it, without which I'd never be known as "Zippy".

Why am I writing this nonsense? I'm not sure to be honest. It feels good to get some of this out of my system. Possibly because in day to day life I try to hide the impact on me - it can be embarrassing. It effects me a lot. My muscles cramp up all over, and often completely knot up. My nerves feel like I have electricity zipping through them. I get crippling pains from nowhere that feel as if I have had a major injury - just today it's my right knee. It feels like something is really wrong inside it, but by tomorrow that will be gone. It's weird, my body is wired up wrongly (metaphorically as well as now physically). Tomorrow I may be fine, or another random pain may flare up.

The regular pain was tough when I was in my 20's, but two decades on and it's different, and worse. When I was younger it was sharp pains, but now it's constant deadening, dull aches, interspersed with sharp pains. I rarely get a nights uninterrupted sleep. After my neck muscles take about an hour to relax enough to doze off, I'll wake up around every hour, and have to move. There's more tossing and turning than an offshore platform full of lathe operators. So in the morning, I'm beyond tired. It can impact my ability to function properly due to the pain, tiredness and complete physical and mental exhaustion. Funnily, some of my best technology ideas pop into my head during those restless, sleepless hours.

Workwise, I've had to change a lot of things over the last twenty seven years. I've had to rebuild after quitting a promising offshore coiled tubing career path because rigging up/down would be cripplingly painful. Imagine being too sore to sleep after a 12 hour shift of intensive physical labour in the cold rain of a Scottish winter. I've had to strategise a career path that could keep me ahead of my failing spine. I'm more comfortable in coveralls than a suit and tie - perhaps because my neck is so chunky that I look line Fred Flintstone at a parole hearing.

The two decades of pain and problems have also coincided with another family illness. This one maybe less rare - my Dad had early onset dementia. I was in my mid 20's when he was diagnosed and I watched him deteriorate over time, with my mum caring for him, then latterly a specialist hospital ward caring for him until his passing. My Dad was a grafter, he'd work long hours and be stressed beyond belief, always going above and beyond just to appease a company that really didn't care about him. While it put food on the table for us, and kept us warm, it did very little for his wellbeing.

One of the best things to happen to me (in hindsight) is being made redundant in 2016. That's despite the vindictive nature of the company doing it mid-investigation into the Eljamel issues, and the Aberdeen Neurosurgeon suspecting that my neck fusion had broken (said company even refused to allow me to pay to continue medical cover, and I had to wait a long time to go through the NHS to calm my fears). One Friday the company message at a big town hall meeting was "We're not having any more redundancies at all, nobody has to worry" then the next Tuesday when I let HR know that there was the possibility of needing major spinal surgery and I could need 12 weeks recovery, very quickly I got the letter that my role alone was being made redundant. How nice of them. Good lesson though - I never want to run a company with values like that.

Again, why am I sharing all of this? I think it all leads towards how I've shaped my career to where I am now. There are a lot of positives out of it all. I've built levels of determination and resilience that I may never have had without my weird Lego spine. I generally don't try to conform; to fit in with what others believe you must do. I don't try to be the same as everyone else. I kind of embrace my weirdnesses, both physical and mental. I question traditional corporate culture because if it doesn't suit me, then there will be a lot of other people that don't fit in. I try my best to be be myself in everything I do. It all ties into how I set up Resolute - I always wanted to work for a company without unnecessary layers of shite that just cost money and slow things down, so I designed one. One where there isn't a rule that I must wear a shirt and tie every day, and sit at a desk from 8am to 5:30pm "just because". One where the culture is genuinely for creativity and innovation, rather than try to write procedures for creativity and innovation. Honestly, that is such a ridiculous philosophy. Ever wonder why so many great and left field ideas come out over a few beers? It's because the rule book is out the window at that moment, things are relaxed. Please, if you have a procedure for innovation, or use a book on "Ten steps to innovation", chuck them in the bin, and have a chat over a beer or a wine. You'll achieve far more idea generation over a ￡100 bar tab than you will by paying some "Innovation Evangelist" ￡600 a day. You'll hear less shite spoken too.

What is in line for me in the long term? Who knows. I think I've got the medical problems reasonably under control. A combination of nerve-pain medication and exercise definitely helps. Well, when the gyms are open that is. Despite having a spine as seized up as a rusty old Robocop having fallen asleep in the Scottish rain, I have been doing Taekwondo for nearly five years. Martial arts are great for physical and mental wellbeing. The stretching, fitness, moving, memorising patterns, learning theory and culture are all fantastic for me, given my physical issues, and with wanting to keep my mind going strong. I think I'm now around the age that my dad was when his Alzheimers symptoms were starting to show, so I'm always keen to learn, to push myself, to never stop progressing or changing it up. Taekwondo has a set of values, or Tenets, that fit in quite well with my approach; Courtesy, Integrity, Perseverance, Self Control and Indomitable Spirit. My Taekwondo club is one of the highest standard around, with many students in the Scotland squad and a genuine world champion instructor, and somehow I've won awards at it - mainly for my bloody minded determination to keep going. There are certainly better students, but I do okay for someone as physically messed up.

I may not be conforming with corporate expectations; the expected continuous push for investment, pitching the same ways and stories about business that everyone else does. Investopedia state that 90% of startups will fail, so why be the same as everyone else? You only need to watch the comedy series "Sillicon Valley" for the way they mock startup pitches with everyone saying "Making the world a better place... with data". I can spot a bullshit salesman a mile away, and I'd hate for us to appear the same way just by following the same model as everyone else.

Anyway, Resolute seems to be going very well. Despite a young (ish) man with an old mans spine at the helm, we've developed tech, focusing on solving peoples problems rather than forcing a sale of what we have on the shelf. We've got granted patents, more patents pending, quite a lot of work in the pipeline, and are in the process of diversifying from oil & gas solutions to solving some major leak problems in the nuclear and pharmaceutical world.

None of this would happen without my rare disease getting in the way of my career. I suppose I should be thankful to it.