Inspire Others

Mevagissey in Cornwall. Photo credit: Chris Chapman
Audio recording of the blogpost – added to help people, like Harrie, who find it easier to process written information when they hear the spoken information alongside. Read by a member of the Inspire Others team.

My story starts in August of 2014 but it is not just mine. Perhaps this should be called ‘Our story’.

Before my story started I was a mother of two, Big J who was 10 and Little j who was 6. I worked full time as a Teacher of the Deaf in a residential secondary school for severely and profoundly deaf students. I taught Design Technology Resistant Materials (woodwork and metal work), Textiles, and Food at both GCSE and A Level and was the Head of that Department. I had been there for 23 years and loved my job. I felt I made a difference to the children I taught and it was the job of my dreams that I had managed to get straight out of Uni.

The accident happened when we were on summer hols and we set off in the car to visit my father for a couple of weeks by the sea, where he lived in Mevagissey, Cornwall. I had the kids in the back, watching DVDs on the in car DVD player, the boot packed to the brim and we were looking forward to spending some time with my sister and her daughters as they had come over from Malaysia, where they lived, for a holiday ‘back home’ too.

We were travelling along the M5, having just joined from the M4, and I was about to consider stopping for some lunch when there was a rash of red break lights in front of me. I stopped the car but had had to stop it quite hard to not bump into the car in front. A split second after the whole world exploded around me. Spinning, screeching, nasty tearing metal noises that seemed to go on forever….then nothing. Silence, blank, nothing. Noises started to filter back in and I started to wonder where I was, what was I doing? Thoughts came slowly back to me and I realised I’d been in the car with my children… where were they?? Are they ok?? I couldn’t see. I could see, but I couldn’t, it was like I couldn’t understand what I could see… nothing made sense.

We had been hit by a long wheel based transit that was refrigerated and fully loaded. It had hit us as full speed, about 70-80 miles per hour, when we had been stationary. The driver had clearly been looking elsewhere and had not seen that we had all stopped in front of him. The back of my car was missing. The entire boot was crushed forwards. The back seat that the children were sat in had been shunted forward towards the front of the car with the impact and every part of the car was damaged as we had spun and hit other cars and the central reservation.

What happened from there is patchy, but my son was rushed into surgery and needed a full craniotomy to remove a blood clot the size of an orange from his brain. He had smashed every bone in his face, both eye sockets, his nose was broken in 7 places, his cheek bones were in fragments and he had even broken the roof of his mouth. He was in an induced coma after what was a very long surgery and it was difficult to say if he would survive and if he would be able to walk or talk or be able to breathe on his own when they brought him round. I was warned he may not even recognise any of us if he did. My daughter was picked out of the car by the fire brigade and was taken into hospital too, as they suspected that she might have internal bleeding. She had broken her arm and had a huge wound on her cheek and she had a look of pure terror on her face, her eyes wide with tears falling out of them, looking to me for reassurance I tried hard to give. She went mute for weeks afterwards.

I still couldn’t see properly and understanding what people were saying was almost impossible. The words didn’t seem to add up to full sentences that made any sense, and I was desperate to understand as they were all trying to tell me what was going on with my children. I was living every parent’s nightmare and couldn’t seem to pull myself together enough to do anything about it. I felt so very helpless. So much pain.

I struggled on for weeks in the hospital, J and j my only focus. He had further surgeries to put his face back together and developed diabetes insipidus as a result of the pituitary gland damage that had happened, and he was indeed a different child to the one who I knew before the accident. My injuries I didn’t mention, I wasn’t important here. I put it down to stress and soldiered on, my sole purpose to be there for J, to support j in helping her watch and learn how we are all mortal and that bad things, horrific things, happen to good people. I just put one foot in front of me as best I could and tried to cope as best I could. I thought it would all get better once things calmed down. But it didn’t. It didn’t get better and it didn’t calm down either. I couldn’t do simple things I was capable of, easily, before. I still couldn’t understand things people said. I couldn’t remember anything. I was truly lost and confused and unable to understand why I couldn’t just pull myself together. I tried concentrating harder but it made no difference. It took several months to work out that I even had a memory problem I was so used to always being able to remember it didn’t occur to me to think ‘I must write that down or I won’t remember it’, and then I had no idea I’d forgotten it. Life just kept coming at me and I was firefighting all the time. J was so weak he couldn’t go back to school, home schooling started and so did the lengthy litigation proceedings for all 3 of us. j became scared of everything and ‘didn’t seem present’ at school. She had constant nightmares and would let me leave at bedtime because she was terrified I’d not come back.

Because I hadn’t ‘complained’ at the scene of the accident and had only concerned myself with my children it took over 3 years for me to receive any rehabilitation for my brain injury. By then I was in a dreadful state.

Who I was before…

As I said, I grew up in Mevagissey, Cornwall and had a lovely childhood there with beaches, coves, coastlines and the sea on the doorstep. All of which I grew to hate during my teenage years as there was nothing to do ‘fun’ wise at that point in my life! As such I moved away to Bristol for University and had a view to become a teacher. I loved spending time with children and helping them learn but also liked designing and problem solving. I did a degree in 3 Dimensional Design and during the last year of that I spent time in various schools to research my major project and thesis topic. That was when I visited a School for the Deaf and had my ‘lightbulb’ moment. It was a primary school and all the pupils were deaf. I sat with them in assembly and we all sang and signed the Rainbow song and instantly I knew this was what I wanted to do with my life. I went on to do my PGCE and was lucky enough to get a job straight after teaching Design Technology at School for the Deaf. I taught Resistant Materials and Graphic Design at both GCSE and A Level and spent my whole career there, 23 years, before the accident made it impossible for me to return to work.

During my time there I was promoted and had my two children, one of each. Life had its challenges but as with most things when something horrific happens you can look back and wonder what you were thinking when you thought that was bad!

What my symptoms are….

As my head injury wasn’t picked up on and I was trying to deal with the injuries of my children it was very difficult to pin down what was going on with me. There was always an element of stress and psychological damage from my circumstances. I now had a disabled child who’s medical situation was critical, I wasn’t ever not going to be affected by that, but fundamentally I knew my brain didn’t work as it used to. It was so difficult to describe to anyone what was going on. I lost the ability to find words, my mind went blank when I tried to explain anything or give instructions. Not great if you’re trying to teach! I was completely intolerant of noises. Even small noises hurt. The voices of my children hurt. I just couldn’t cope with clattering and chattering. I was dizzy all the time. The world just wasn’t where I thought it was, worktops seemed to be somewhere different when I tried to put things down, door frames I bumped into trying to leave a room, the floor didn’t seem to be where I thought it was so my foot came across it sooner than I thought and I stomped everywhere or it was too far away and I nearly fell. I recall going to a firework display and we stood to watch as it got dark. After it had finished I was rooted to the spot! I couldn’t move because I couldn’t see where to put my feet because it was pitch black. I was so scared and had to hold on to someone for help to get somewhere where there was light to see where to step. I was light sensitive too. So I started to just remove myself from everything. Moving at all was mostly impossible. My head and neck went rigid to try and stop the spinning, I would sit and not move as much as possible and all my movements became very slow and shuffly and I’d have to make sure I had everything before I sat down to not have to get up again. I shut down from going out. The business around me panicked me and I couldn’t work out why, I just avoided it. I couldn’t think straight when I was out, my whole being just screamed ‘get me out of here’ when I was out, and I couldn’t breathe until it was quiet and peaceful again. I was literally holding my breath every time I left the house. I started to shut down and had to lie down only a few hours after ‘Id got up. I’d get physical pain on the right side of my head, starting in my right ear, radiating across the side of my face, down my jaw making my teeth ache and around my eye socket. Pain killers didn’t touch it, and I had to shut and cover my eyes, it hurt to see. During all of this I had many diagnoses, initially a mild brain injury, then post-concussion syndrome which they said would clear after 18 months. It didn’t, if anything things were worse by 18 months post accident. I could move even less and my cognitive functioning was appalling by then. It was around this time that one day whilst I was out I had a searing pain shoot through the bottom of my left foot. I couldn’t place it to the ground and it hurt for several days after. Eventually I went to see someone and they found I had ruptured my spring ligament. There was nothing they could do and it eventually healed, but it healed too long and now other ligaments are unhappy as that one is no doing its job properly anymore. My ankle has collapsed as a result, but this has happened because my foot was on the clutch when the accident happened. Clearly I sustained some microtears in that ligament which after all the stomping because of the dizziness it gave out. Then of course the right knee came under pressure because I was limping and that now is unhappy. I could read things either. The words didn’t join up into sentences so nothing made sense and id misinterpret the things written and think they said something completely different. It was hard work reading and really confusing to understand some of the paperwork I had to comprehend, particularly the legal and medical stuff that was because of the accident. And I could hear people properly either. It was like their words didn’t follow a thread, I couldn’t understand and join them up either and I definitely could hear or understand anything if there was background noise or music with other words in the mix. And then there was the mixing up words! Words would come out as a mixture of two my head couldn’t decide which to use, or I’d just randomly substitute ad word for another and everyone would look at me strangely…! I’ve had whole conversations about a new handbag I’d bought, which was fine until I started discussing its non stick properties…. I’d actually bought a new frying pan!

It took around 3 years for me to get some proper help with all this. By then I was depressed, suffered from anxiety, was struggling with the needs of my children, isolated, in constant pain and struggling to see the point of anything anymore. My children and their needs were the only thing that was keeping me here. Things were as bad as they possibly could get and there was so much to unpick about how far I had deteriorated from my pre accident physical and mental health. But the help came in many forms and they helped me come back from a very dark place. With all their help I came to understand exactly what was wrong with me. I did have a brain injury. I also had vestibular damage and all my symptoms were coming from something called Vestibular Migraines. I had also developed something called PPPD – Persistent Postural Perceptual Dizziness. This was what was causing all my dizziness and inabilities to work out where I was in space, my inability to cope in busy places or tolerate even my own family moving around me. My memory was shocking because my brain power was all tied up with trying to stay upright and get me from one room to another without falling or bumping into the door. Once I learned what was going on I was able to move forward, validated that it wasn’t all just in my head, and able to start the process of rehabilitation to try to improve things if I could and manage my life around this so that I could attempt to gain some quality of life back. Some meaning. Some purpose. Some ability to function of sorts.

My therapy team came onboard, and I had a team that collaborated and worked together to try and pick apart all of this. Occupational Therapy to help me gather and work out systems to help me think straight when in difficult situations like supermarkets or busy settings, and to help me generate systems to find things as my memory was shot. Neuropsychology started to help me reach a point of acceptance over my injuries and those of my children; to be ok with the change of life path for us all. To be able, once again, to see the positives in this life and grieve for the loss of the last one. That’s still a work in progress, if I am honest! Speech and Language Therapy to help me enjoy reading a book again and understand what I have to do to retain information better and understand it. Ophthalmology to help with the reading and the visual migraine triggers. Vestibular therapy to help with the vestibular deficits, triggers and migraines. Migraine specialist to help with reducing the migraines. Physiotherapy to help my body move better and deal with the physical pain and injuries, and of course Case Management to help manage all of these so that I wasn’t overwhelmed by all the input, which of course brought on a migraine…. There’s been a lot of input, and I couldn’t have done it without them all. In some ways writing this now helps me realise exactly how far I have come and how much work has been done over the last 5 years. Its been a long hard slog, but well worth it of course.

So, what have I learnt to do to cope?

I’ve learnt I cant do everything, and I certainly cant do as much as I used to. I have to pace myself and plan ahead, making sure there are opportunities to rest and that I haven’t scheduled in too much in a week. I have to plan in rest breaks in the day and rest days in the week. I have to go with the flow and cancel stuff if I cant do it. I have to read the signs that my body is giving me and try to balance between doing too much on a good day and triggering a migraine and having 3 bad days where I can do nothing. Its incredibly difficult and I get that balance wrong all the time, but I get it wrong less than I used to so I guess that’s an improvement!

I’ve learnt that the people around me are not mind readers and cant tell if I’m struggling unless I say so. Again, this is a work in progress as I seem to be particularly resistant to accepting I need help and then asking for it…! But it is unfair on my family to expect them to know if I have a migraine coming on when I’m not expressing it so I need to ask for help and accept it.

I’ve learnt that ‘rehab’ is not a finite thing. You have to work on it every day, in any way you can, even if that day is only ‘achieving’ a rest day, to make progress. Rehab doesn’t end, it is for the remainder of your life with a brain injury and the more you practise rehab the better you get at it. Its not a process with an end, it’s a new way of life. Perhaps it needs a different name…?

I’ve learnt that rest breaks and rest days are legitimately allowed! They are part of the process and essential to success. I still feel guilty about taking them, but less so than I did. Another work in progress I guess!

I use routine and strategies all the time now to help. I put timers on all the time to remind me to go back to something later – a 30 minute timer for the quick wash I have put on in the washing machine, a reminder to take my meds in the morning, my evening pills sat on the table next to where I settle down for the evening, a routine to check my calendar each evening to know what’s going on tomorrow and another routine to check it first thing because I’ve forgotten. Keys are always put in the same place when I come home, I always shop on the same day at a time when the supermarket is quiet, I meal plan and shopping list write on a Sunday for the week ahead. Routines are my friend! Timers, apps and calendars are also a must in my life. iOS updates are a particular highlight as I discover easier ways to automate my life and tie up less brain power trying to remember things. The more that my phone can do for me the more time I have to stop worrying about remembering things and spend time doing the nicer things in life, things I had lost before.

I’ve learnt what my difficulties are, but more importantly, I’ve learnt what my limitations and triggers are. Knowing these things I can better manage my life and plan so that I can work around those difficulties to some degree. Its not always possible, and its not always avoidable, life still happens at me occasionally but I now have more capacity to deal with it when it does and know what I need to do when I start to struggle. Everyone’s brain injury is different and will mean different consequences for each individual, but knowing your own and understanding how you can best manage it is key and I am grateful that my team have helped me reach that understanding.

Although I would have said I was a strong person before the accident there is no denying that this ‘life experience’ has really shaken me. But I am proud of how I have managed, how I have coped with what has happened to my children and extremely proud of how I have managed to help them even when I was at my lowest ebb and struggling with my own injuries. I’m proud of what I have learnt along the way. I had no knowledge or experience of brain injury prior, I didn’t even know what the term was or what it meant and I have learnt so much about how it feels, what it looks like and how to help my children and family struggling with such things.

I recall having a conversation with a Care Expert in the very early days of all this, and we were discussing J and his injuries and she bluntly said ‘It’ll get better.’ I was horrified, shocked, and appalled that she could say such a thing. I couldn’t see any way that this could get better. In any context. All I could see was despair ahead forever more and I decided she just ‘didn’t get it’. But here we are, ‘better’. Things have more positives than negatives, life is different but good and we make the best of what we have each and every day. Things could have been very different on that day of the accident and I am grateful that we all made it out, maybe to be on a different path and to do different things than we had planned for our lives, but we are here nonetheless.

I didn’t manage to get back to work in the end. I was gutted by that, but it was clearly not meant to be. I’d done my time, I’d given all I could and now its time for something different. I don’t know yet what that will be but I am sure something will present itself. It may just be that my purpose is as it has been since the accident, to support and nurture my children in such a way that they can recover and lead purposeful and happy lives, who knows. But I am grateful that I have the opportunity to not return to work and to have the time to do just that. I now get time to enjoy things that I always liked doing, art, crafts, textiles, painting, restorations, that sort of thing. They may be more challenging these days but I have the opportunities to do them, which is nice.

I now live a much quieter and simpler life and value the opportunities I have to focus on the things that are important to me, my relationships with friends and family, spending quality time with the people I love and enjoying some of the simpler things in life. A wood fire of an evening, sunsets and sunrises over the fields, chooks roaming free in the garden and, of course, kittens to cuddle and make us laugh with their antics!

When you are in the aftermath of brain injury it is incredibly difficult to see how things can get better, but the Care Expert was right, it does get better. So, for those of you still in the midst of it all, still struggling with all that brain injury brings, keep going. Don’t give up. One baby step at a time. The saying ‘its darkest before the dawn’ is so true and you can come out the other side, I promise.