A Day to Forget, that I'll Always Remember.                                                                     

 “What happened to you?”

 “Would you’d like to share your experience with the group?”

 

These 2 apparently very simple were asked by a Headway social worker at a post ‘brain trauma group therapy session’. I really didn’t see any point in my being at this session. As far as I was concerned what happened to me was none of her business (or anyone else’s for that matter). It was the worst time of my life, the most horrific thing that had ever happened to me, I was making a good recovery and that was it. Selfish? Angry? Lost? Confused? Scared? … all of these …  but mostly Angry … why me! Please God don’t let it happen again!

 

As you can probably tell I really didn’t want to play this ‘let’s share’ game – I wanted to forget the previous 5 months that had changed my life and the lives of those closest to me forever. You don’t ‘get over it’ (as I then thought I could) you have to learn to live with it. If you’re lucky the people you love will also find a way forward with you. Many don’t and I’ve since learned that many relationships fall apart. 15 years on in 2014 I’m still with the wonderful man who got me through this terrible experience and will always be grateful for the love, support, patience and encouragement he gave and continues to give me every day … as I said you never ‘get over it’ just have to find a way forward.

 

So what did happen?

 

On Saturday 22nd May 1999 after a wonderful day spent with my Mum and partner in London I had a sudden really bad headache … well actually back of neck ache. I don’t get headaches so this was odd and so painful – knife-in-back-of-neck painful. I remember a sea of faces asking “what’s wrong”, “are you OK” – but I couldn’t answer – I could hear and knew what they were asking but the brain to voice circuits were not working. One of the faces called an ambulance and I don’t remember the next 2 days apart from vague semi-conscious recollections of busy corridors, A & E trollies, noise, lights that kept waking me and a gentle stroking hand on mine that seemed to be keeping me grounded on earth – holding on and bringing me back from wherever it was my body was trying to take me. I’ve since learned that hand was my partner, Paul, who spent 24 hours talking to me with my Mum about anything and everything to stop me drifting in to a coma. Without this stimulation I probably would have died.

 

On 24th May I woke in a harsh clinical place – sick people in hospital beds all around me. Around me! Reality check … I was not a visitor. What had happened?

 

Paul, again holding my hand, gently told me that I was going to be OK but that I’d suffered a sub-arachnoid brain haemorrhage (whatever that was?) and I’d undergone an operation to fix it. The surgeon then came and re-enforced that totally unbelievable statement. I was so unimpressed with him at first (despite the fact he’d just saved my life). The first thing he said to me was “do you know where you are” … honestly did he think I was stupid? He then went on to explain what had happened that a vein in my brain had burst and I’d suffered a very bad bleed from which I was lucky to survive. To my horror he told me I’d been born with this weak blood vessel and it could have burst at any time – a real time-bomb. If I’d suffered this aneurism just 2-weeks before I’ve have been in Tobago on holiday and goodness knows what would have happened. Happily, swimming every day on holiday helped me survive the operation. My lungs and cardio-vascular system were in excellent shape.

 

I’ve since learned that 70% of people don’t survive and of the people who do many experience permanent disabilities of varying degrees. Apparently this first operation took 9 hours. My Mum and Partner had been waiting in the hospital all that time. My surgeon said it took 9-hours as my brain was very small and it took him a while to find it … ho, ho, ho, … just what I needed a brain surgeon with a sense of humour! Actually he was and still is a wonderful man who continues to save lives every day. I owe him a lot.

 

What happened next?

 

The next few weeks were really frustrating. Spent most of week one in bed and when I did finally decide to get up I fell over. What was I thinking! Well actually I can’t answer that. My brain had been sliced into to fix the bleed (not the first so I’m told … scans showed I’d had several before but very minor ones). I just decided I wanted to get up so I did … seemed not unreasonable to me. The nurse quite rightly got very cross … I got cross … no-one told me I could not get out of bed. Luckily I did not hit my head on anything – I could have killed myself!

 

Things got better and after about 10 days the bandages were removed and I was allowed to get up – with help. I couldn’t walk properly … kept veering over to the right like a drunk! Still got the hang of it with the help of the fantastic nursing staff and eventually – major victory - made it to the loo on my own. The man in the bed next to me gave me a round of applause – he was really ill – brain tumour – but so nice to talk to and always positive. Sadly he didn’t make it.

 

In the loo was a mirror … so what I hear you say! Hanging on to the sink (I was still a bit wobbly) I looked up. I screamed and nurses came hurrying in. 31 metal clips in my blood-congealed shaved head gave me the fright of my life. Some warning would have been really good. I looked hideous.

 

This trauma over I went back to bed and resolved to get home for my birthday on 12th June and buy a shed-load of head scarves or a wig. No way was I spending my 37th birthday in hospital.

 

The next few weeks were a constant round of little victories … sitting up myself, becoming more aware, reading was a no go (couldn’t focus and seeing strange shadows everywhere), being able to talk more fluidly and re-learning how not to be rude!  The part of my brain when the injury occurred was in the area where all the ‘social skills’ are stored. I’d lost all these. The most extreme example of this (I’m told - I don’t remember)  being found walking round the ward totally ‘starkers’ because I was hot. Another example being when one of the ward social workers from Headway came to talk to me and I got fed up; I just put my headphones on and ignored her. She took it well and Paul gently removed the headphones and told me I needed to listen. This is apparently all part of a very common after effect of brain injury ‘dis-inhibition’ – the Headway lady was very kind and understanding.

 

The worst thing after the operation was the lack of understanding … not mine … people who came to see me – relatives, friends and professionals. When your brain has been sliced into it takes a while for the connections to re-form and you need slightly more time than people are prepared to allow you to think in order to formulate an answer. Everything has to be done in stages. It’s like having a filing cabinet in your head. People ask you a question, you hear, you go to the cabinet, retrieve the answer, formulate the words to deliver the answer, speak and job done. Most people do this in a nano-second, someone with a brain injury needs longer. It so used to annoy me when people would not give me the time I needed and/or then repeat the question slowly (often louder) as if I was some sort of idiot.  I tried hard not to get cross but it was too much bother going back to my mental filing system – I didn’t always manage to conceal my irritation.

 

Friends and family continued to visit me every day – Paul not missing a single visiting session. How he did this and kept our business running at the same time I’ll never know. My Mum moved in to our house, putting her own life temporarily on hold. I know Paul could not have got through this time without her. She was an amazing woman – sadly she passed away on 30th November 2013 – we miss her every day. She was the only other person who had any real idea just how much Paul and I went through in 1999 and throughout the last 15 years.

 

I did make it out of hospital for my birthday and was so glad to be home but also very scared. Everything seemed big, different, loud, in my face. My eyesight was still not right – kept seeing shadows where there weren’t any. Very unsteady on the legs. People were very kind. But, I didn’t want their kindness, I just wanted to get back to the active, always busy, Judy I’d been just a few weeks before. I was so frustrated. I was home but not home in my head – I seemed to be drifting in an unreal reality that I recognised but did not feel connected to. I tried to figure out how people wanted me or expected me to react to things. It was like being a child in an adult body – unsure of how to be and needing constant re-assurance that I was doing the right thing.

 

Where am I now?

 

After this first operation I needed a further 2 sessions ‘under the knife’. I developed an infection and had a very weepy sore on my scar. The piece of bone from my skull that they’d replaced after fixing the initial bleed had to be removed (in July) and then in October a plastic plate finally put in its place after months of antibiotics and a ‘Fontanelle’ (soft spot on my head like a new-born baby) that pulsed with my heartbeat. I became ace at fashioning headscarves to co-ordinate with my outfits. I wore a wig for a while but it was so itchy and hot I stayed mostly with the headscarves.

 

I recall going back to the hospital for regular check-ups for about 12 months and at my last ‘check-up’ appointment I asked about having a family. At 38 my biological clock was ticking. I’m not sure what made me ask about this. I was lucky in that I have 2 lovely step children and to be honest never really had a desperate urge to have my own. The doctor said it would be possible but any pregnancy would have to be carefully monitored and a natural birth was totally out of the question – would have to be a c-section – too much pressure if I had to do all the ‘pushing’. Not he assured me that I was likely to have another haemorrhage. So, hugely relieved that I had a bone fide reason not to get pregnant I went out of his office with the rest of my life ahead of me and permission to drive again. I’d been banned from driving in case I developed Epilepsy - thankfully this did not happen.

 

I did in fact have a baby boy in 2004. Not planned but the best thing that has ever happened to me. The pregnancy went really well – I felt great. Weekly check-ups were a pain and I did have a c-section but well worth it. My son arrived 7-weeks early but all is well and he is a total joy.

 

It may sound a little ‘flakey’ but I firmly believe that everything happens for a reason. The vein in my head didn’t burst in Tobago and I survived a total of 15 hours brain surgery. I believe I came through this horrible experience to be Karl’s mum. Karl means strong man (spelt the German way with a ‘K’). At 7 weeks premature the midwives were concerned for his survival but within 24 hours he was out of the prem baby unit with me in a side ward. A little fighter.

 

However, you can’t ever forget a sub-arachnoid brain haemorrhage – it really is for life, not just for Christmas. It doesn’t have to be a negative or bad thing but it will and does change your life and the lives of those around you. More does need to be done for the families and loved ones of those who have had the injury. I think that if more people can relate their experiences after the event it would really help people to understand what it’s like.

 

The hardest thing about my recovery was that I looked ‘normal’ so everyone assumed there was nothing wrong with me. In fact every day was a major struggle. It really was like being a child in an adult body. Everything needing to be thought through as the brain re-made its connections and then just hoping the connections the brain made were the right ones.

 

I don’t remember what I was like pre-haemorrhage but I’m told I’ve become a much harder, less sensitive and much more forceful person. On one level – that is to the outside world – I’m just a strong woman functioning as a local councillor and Mayor of the town in which I live. I’m very proud of this achievement as indeed was my Mum and are my family. I’m told I’d never in a million years have done this pre 1999. In 2002 my work as a film producer was acknowledged with a British Academy Award nomination.

 

However, on a personal level Paul has had to deal with a woman who looks like the girl he fell in love with 30 years ago but in fact is a totally different personality. No one ever thinks of this hidden ‘unspoken change’. For the person suffering the brain injury it’s relatively easy. We get all the medical attention and help we need and go on in some way or another just glad to be alive. But, for the partner and close family it’s really difficult. They largely get left to work it out and get on with it. Paul and Mum having each other to talk to was so important.

 

I did have some counselling straight after the injury but to be honest I was not even vaguely ready for it. I’d come through, was able to function in the world and just wanted to forget the whole thing. The counselling then was a total waste of time – largely because it was just too soon and I had not fully appreciated what happened. It is only now that I feel talking to someone about what happened might help the healing/ understanding process. Maybe telling people about my experience is part of that. If I can help just one person feel less isolated I’ll be happy.

 

 

 

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