1 Going through the motions
I’d been back at work for about eighteen months before I realised that I hadn’t actually been doing any work.
It was horrible. I literally couldn’t understand the notes I had been making or the papers I was reading. I’m a computer scientist and the work wasn’t particularly maths-heavy but even moderate-level formulae just weren’t going in. I had forgotten the meaning of the symbols by the time I had got to the equation.
I remember there was a point of realisation: ‘I have got no idea what I’m doing’. I was going through the motions – kind of shadowing what I would have been doing as opposed to doing it. It was very peculiar because I still felt like me and yet at the same time there were these bits missing.
I don’t know how much my colleagues realised what was happening. Some people did say, ‘we think stuff has changed with you, you’re behaving differently.’ When this realisation came that I couldn’t really play catch-up anymore, I had to start again, basically. It was a big stress but also a big relief.
I was pursuing my post-grad research studies at university and I had submitted my first year report just before I got run over. The report is a milestone you have to get over to see if the department are going to keep you on. And fortunately I had got over that so, having decided it was worth it, they didn’t want to boot me out because of what happened.
I was so lucky to not have a job that pressured me into producing results. It was just me doing my own research and my funding sponsor was supportive. There were things required of me but fortunately people in the department made sure I was kind of shielded from all that stuff and I could get on with things. I only realised later how much my PhD supervisor did to look out for me.
To have that opportunity is so tremendously lucky. I can’t imagine how most people would be able to get back to work in a normal job because straight away they would have to produce something that was useful for other people.
Working saved me, I think, from going off the rails. At least I had been doing something and there were minuscule bits of things that had been achieved. I was back into it, back into the routine.
Because of everybody’s support getting me back in to work, eventually my ability to work came back.
2 A crossing
I was twenty-three and I’d been on my first ever trip to the US, which is very car-centric. I was terrified the whole time. I’m vision impaired and I had to have people help me cross the road. I remember getting back and saying “oh, thank God I’m back here”. And then a week later I got run over.
Basically I was at a crossing. One lane of traffic stopped for the lights, the other didn’t and I, for whatever reason, just assumed that because one lane had stopped, the other one would, and that was that really. It was a horrific ordeal for my parents, who have always been my safety net and solid ground. It’s probably a thousand times worse for parents than it is for the person going through it. All the time, despite everything, they stayed positive: ‘we can do this, we’ll help you get there’. They never came and said ‘this is so difficult.’ I still don’t think I appreciate all that they actually had to do behind the scenes.
23 year old male pedestrian was crossing on a pedestrian crossing – hit by car 40 to 50 miles per hour. Hypotensive in ambulance. One litre of fluids given pre hospital. Previous medical history visually impaired. On examination obvious bilateral below knee tibia and fibula fractures. Pain right arm. Extensive grazing. Query head injury – blood over face. No loss of consciousness. Glasgow Coma Scale 14-15 out of 15 throughout .
It happened in 2006 and I was going back to the hospital for appointments until 2013. There have been quite a few stages to it: eight months in a wheelchair, then a zimmer frame. I’ve had frames stuck to my legs to straighten them and stuff. Things taken out, things put back, a screw tightened. I did actually have a screw loose! My parents had to come half-way across the country for years to help me get to the appointments.
The NHS is amazing on the physical side of things. I have had stuff done to me that just boggles the mind. If it is serious, it’s sorted. They will fix you. But if it’s not understood or it’s kind of a background thing it’s a bit harder, because they are so stretched. I saw occupational therapists but it was always on the physical side of things.
The other stuff was just my good fortune – I mean, it’s not necessarily the health service’s responsibility to do all the stuff that my family and friends did for me. I was just lucky to have the right support at the right time.
The reason why I went back to work at first was not to do work. It was to keep on a level, on an even keel. Maybe everybody else knew that from the start and I didn't.
In a sense, I was quite lucky because throughout most of the period where the cognitive stuff was affecting me, there was very obvious physical stuff, so people were prepared to offer support. My colleagues made sure I was included in everything, including days out. I’ll never forget: my head of department used to just grab me to wheel me to coffee breaks to make sure I was included. It was open plan offices and as we went past everybody he would say something like ‘oh, he likes to get out’. It was just, they made it … they would have been fantastic psychologists and physios because they knew exactly what to say to me to make me get on with it. One of my friends joked ‘I’m glad you got run over because if you carried on working at the pace you were you’d have killed yourself!’ We could say stuff like that to each other.
When things went heavy, if you like, they were there to support me but most of the time it was… I wouldn’t say they were teasing me or anything like that. It was more that it was just like it used to be. They knew they could include me in things.
I got involved in a funding bid for a research project on supporting older people to access technology. I turned up – a twenty-three year old – on a zimmer frame and the first thing I had to say was “I am not taking the mick. I am really not taking the mick.” We got the funding and I ended up being part of a really great project and having part-time work during the rest of my studies. When you’re with a group of people that are passionate about the work and motivated and excited by it, it’s escapism from your own situation as well.
Because of it being the liability of the driver that hit me, there was the support there to keep me going. My solicitor was a very lucky find. He does a lot of good stuff and really sticks up for people. He arranged for all sorts of care that was above and beyond what would have happened naturally.
The British Red Cross got equipment for me to physically get back to work and the department at the university that was responsible for disabled students also looked after me very well. We had a longstanding relationship but this was a lot more effort on their part. They organised some one-to-one counselling about things that happened surrounding the accident. Then I got offered this course on the management of stress, which used a form of Cognitive Behaviour Therapy and was phenomenally helpful. The first thing they said was “it’s not just you, it’s everyone, it’s a very common thing.” It was about monitoring yourself for signs of stress or anxiety and nipping it in the bud before it becomes an issue. I got so panicked from having to play catch-up I was really starting to freak out. It still occasionally happens now if I don’t put a lid on it.
I wouldn’t be here without my housemate. He used to drive me about anywhere I needed to go as I couldn’t use public transport; used to do the shopping, used to get the cleaning sorted. He’d say, “you need to get checked out because you are forgetting stuff and you are getting mixed up in the order in which things happen.” My parents noticed it as well and nudged me in the direction of finding out more about it. That was helpful because I wasn’t really sure if it was a thing or not - you can’t get out of your own head to analyse stuff.
5 A compound thing
I was never diagnosed with a specific brain injury. I think there were various Glasgow Coma Scale readings and it was up and down over time, as you could imagine if it’s someone that was flaking in and out. So that’s what I know for sure. It was probably not a huge physical trauma but definitely a big shock to the brain because of being concussed.
On a self-report scale of emotional well-being, Mr Atkinson showed a mild tendency towards depression. The persistence of energy, cognition and sleep-related symptoms could point to the presence of a chronic post-concussional state, often noted in patients with blunt head trauma. Emotional disruptions following an accident can take a toll on a person's application to different cognitive skills, which can impede smooth operation of everyday activities.
Mr Atkinson still experiences persistent fatigue, a common problem following head injuries of this nature. To maintain standards, extra effort is required, furthering the draining process. This prevents Matthew from engaging in the full range of employment and recreational activities he enjoyed prior to the accident. This in turn leads to anxiety and irritability which can act to undermine self-esteem, determination and confidence. Mild cognitive problems noted here are likely to be a product of this process and should improve with his emotional recovery.
I assume some of the loss of memory afterwards is because your brain decides it’s probably best you don’t remember that sort of thing. I have gaps in my memory of the time before the accident as well. Like, way before it. I’ve forgotten people and stuff. I went through a stage where so much was changing and so fast – I was in halls and then I went back after the accident and lived in an adapted place and then I was living with other people – and I just got so confused about who everybody was. Telling a friend about this thing that I went to that was really good, and they went – “I took you there!”
I eventually had an MRI scan to see if there was anything specific but they just said anything we had seen was consistent with someone who has had a bump to the head. There was no physically obvious injury or specific area of the brain where there was a problem. It was this compound thing of having the bump on the head and then the whole experience of not being able to understand my work and the knock-on effect of that.
Because of the support I had, I was eventually able to complete my PhD and I’m now in full-time work. Managing stress and having to write stuff down to remember to do it are basically the only problems I have got now.
6 A contribution
There are some things that I could not have gone back to do. If my job had been software development it would have been impossible to go back into that sort of environment straight away - it just would not have happened. I can forgive an employer not being able to take you back.
But equally, it could save the taxpayer a lot of money to have people back in work, as long as it stops them from going off the rails as well as helping them with their lives, which is the most important thing. It could actually cost less because they're not going to go downhill, you know. I think I would have had serious problems if I hadn’t gone back to work.
Going back to work might not be the best idea for everyone but it would be great if it could be supported in some way. Just shadowing what another person is doing might help it come back. Even if it isn't going back to doing exactly what they were doing before, there are potentially areas where they can make a contribution. I'm only talking from an extensive sample of one and it just depends on what's right for the individual person. It might be traumatic because you think “I can't do this anymore, this is terrible”. But it would be great if there was some way to enable people to just keep their toes in.
Mobile technology has improved dramatically in recent years and that has really helped. I depend on that stuff to get around independently because of my vision impairment, and it has completely changed my life. There are a myriad train, tube and bus navigation apps that help you plan a journey and then find the right platform or bus. And just having a map app on the smartphone, with the satellite view, is helpful for planning routes and road crossings.
Over time, my ability to retain information has improved dramatically, but l ask my phone to remind me to do everything because it might just slip.
This watch is amazing. If you’re going somewhere for the first time, you’ll tell it where you want to go and instead of having to walk around looking on the phone and thus walking into things, it lets you know when to turn left and right. You just keep walking forward and it taps you in a certain way to go left and it taps you in a certain way to go right. And I just thought that was fantastic – that I can wander round and it’s like I know where I’m going in a place I’ve never been before.
Unfortunately you have to zoom in on the screen and pan around if you want to look at the small text, so it’s not as accessible in other ways.
Something that really impressed me was a thing Microsoft have been working on for many years and kept completely secret. They just unveiled this headset called HoloLens. Nothing's been confirmed yet but it has amazing potential. The idea is you wear it and it shows you the real world but it can add stuff to it. So if you get a text message it might project that in front of you. But it’ll also know that a particular piece of wall in your field of vision is flat and doesn’t have anything on it and it’ll project it as if there was a telly on that wall with your text message on it. But in theory you can do anything.
One example the developer gives is helping someone fix their plumbing remotely. The expert can draw arrows to show which tool to use on which pipe - on the actual pipes, as the person’s doing the work! And they could watch the repair as it happens and be talking you through it. I think it could be transformative for accessibility. Imagine how it could help people with cognitive impairments. Google Glass, an earlier, similar but more passive technology, could remind people when to take which pills, but this thing might be able to help otherwise very capable people who get confused between left and right, or to assist people remembering the steps involved in cooking by literally pointing them in the right direction, to the right tools - perhaps even highlighting surfaces and items that might be hot, or need to be cleaned before use. People could get so much independence from it. Like I did when I got the iPhone. It’s going to be brilliant.
8 Time is the only thing we ever have
I work as part of a consultancy that specialises in helping developers make websites and apps more user-friendly, specifically ensuring people with disabilities can use them. We really want to make it easy, not just for the users, but for the people making the websites.
People can be wary of things they don’t understand, and designers can, understandably, fall into the trap of assuming that everybody else has the latest snazzy computer and is the stereotypical tech-savvy twenty-five year old. When they realise this isn’t the case and you show them, say, a video of someone struggling to use their website because they have a disability, or come from a different background, universally the designers will say ‘oh my God this is awful. I’ve got to fix it’. It’s very rewarding to help them through that process.
In my spare time I work on software that helps people with visual impairments navigate the web more easily. For example, charts are everywhere on the web, from financial institutions to learning materials. Charts might present something very clearly, but if you’re blind you can’t get that overview. So I’ve been looking at ways of making a chart audible. I'm trying to write code that people can simply copy into their sites and that will work right away.
It’s amazing how much time I suddenly got when I finished the regular hospital appointments in 2013 and the brace came off my leg. The time that used to be taken up by going to the hospital every other week or going to some medical appointment or learning to do things again - that’s when I’m now working on other stuff.
I’m only talking about little bits of code, you know: tools to help with specific tasks. But it’s teaching me things. Most of the time you can use something that already exists to help (like asking the phone to remind me about things that need doing), but sometimes, especially with technical jobs, a computer could be taught to help in a more in-depth way. For example, I’ve made a tool to help me ‘keep my place’ when doing software development, to make sure things are done in the right order. I still find it quite hard to keep track of things like that; it’s great that the technology is there to help. The code’s all open source because I want people to use it – and help me fix the bugs!
So at the moment I am in the exceptionally lucky position, having benefited from the support of family and friends and so many others over the years, where I am still here, can still do the things I’m passionate about and have got some time to do them. Time is really the only thing we ever have. And using it well is important. I am not actually that great at that so far, but I’m working on it…
When we asked Matthew to tell his story for Who Are You Now?, he had some doubts. He reflected that he’s been lucky enough to make a very good recovery. He’s aware that others continue to struggle with difficulties he’s left behind.
Like Matthew, many people spend months or years dealing with fatigue, disrupted sleep patterns and problems with concentration and memory after a road traffic accident – even if scans don't show damage to the brain. Tasks they once found simple seem mystifying and exhausting, and anxiety about the symptoms compounds the problem. It’s often hard to pin down why this is happening, and research has yet to come up with conclusive answers.
Some links that may be helpful:
Find out about concussion
Find out about post-concussion syndrome
Advice on coping after a traumatic event
As well as telling this story, Matthew advised us on web accessibility for Who Are You Now?
Follow Matthew on Twitter:
Lead photo portrait by Andy Sewell
Story © Matthew Atkinson / Headway East London (2016). All rights reserved
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