My story! : 1:- On 7th June 2008 I had gone out for... - Headway

Headway

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My story!

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1:- On 7th June 2008 I had gone out for the night with a mate from work, to the annual dinner of my Ruby Club. We were both fire-fighters. We got changed and left straight from work at 19.00ish. A good night was had by all, but unfortunately I only have others account of this. Austin Healey was the guest speaker, and by all accounts, performed an admirable and thoroughly entertaining job; poking jibes at the club’s notable characters; not me! Must make it part of a 'must do list', to go to one of his appearances, perhaps I will remember it this time! ;) When the dinner finished the two of us accompanied a load of other people to a local nightclub. I am not sure how much alcohol I consumed, but it is safe to say it will have been a fair bit! Friends there that night, have reported that I didn’t seem too many sheets to the wind; but as this was a ruby club do, I would take their account with a significant pinch of salt. My friend and I shared a taxi home. I got dropped off first, and my mate carried on across the town in the taxi. It was probably after 2.30 am when I arrived home. I soon discovered I had left my front door key in my locker at work. My wife was in bed; assuming I was kipping at mates, she had locked the door. I didn’t throw a stone at the window so she could open the door. I had promised her I would not do that again, having done it, when I forgot my key a month before. (When I told this story on local radio interview, I said:- "I didn't want to knock my wife up, having done it a month before!", oh dear, took some explaining to my wife, how people across North Staffordshire had heard the unfortunate choice of words!) . I had got the garage key, and knew where there was a ladder, so being a fire-fighter with specific training for rescues from heights, as part of the rope rescue team! I decided to use my ladder technique and check the bedroom windows at the back of the house, to attempt to gain access. One of my 3 sons often slept with his bedroom window open on warm nights. Not that night, even though it was June!

2:-We have a pitched roof to the rear of our house, and after discovering the windows shut, I must have been on my way back to the ladder when I fell off the roof, I didn’t fall off the ladder, as it said in the local paper, it was left exactly where I had used it in the morning. I must have stumbled, and fell 15ft, incurred a double fracture to the frontal lobe of my skull. I also fractured my right arm just above the wrist. I landed on my front, hit my head, & was left spark out! I remained outside, un-conscious, till my wife put out the recycling at 9.30am! 7 hours later? I assume my wife initially wondered why on earth I was laying outside the back door, and then screamed (masterly understatement!). She ascertained I was breathing, phoned an ambulance, woke my 3 sons up, and phoned my mum and her own family to relay the news!, When the first ambulance arrived, the crew thought the best place for me was North Staffs Hospital in Stoke on Trent, which has a specialist centre for brain injury. The fastest way to get there on a Saturday morning was by air ambulance, so I was taken by helicopter to hospital. We are fortunate to have a large park, with a grassed area, over the fence of our back garden, ideal place to land a helicopter. The next-door neighbours have a public footpath adjacent to them that leads to the park. My lads were dispatched to guide the crew to the house. I was admitted to A&E in a coma, sedated, placed on a ventilator, catheterised, and had a CT scan. My Glasgow Coma Scale score was 5or 7 out 15, depending which hospital letter you read. It is safe to say that whichever it was, I was responding only to pain, and was in a coma! headway.org.uk/glasgow-coma...

As air ambulances can’t carry passengers. My Wife organised a lift to the hospital with her brother (he lives about 5m away.), along with eldest son, and my mum. I had been admitted by the time they arrived, it being 15+ miles away. When the original land ambulance crew were told I was a fire-fighter, they informed their control, who notified fire control of my condition and where I was being transported to. About an hour after I was admitted, my ‘area commander’ visited to offer My wife support and re-assurance. My ‘watch manager’ also came to visit to offer my wife support. Other members of both our families also visited.

My sedation was discontinued the next day, but I had to have another CT scan as I didn’t show the anticipated sign of waking initially, and the medics thought the first one may have missed something. When the results of the CT were assessed, it didn’t show anything out of the ordinary, considering I had, had a significant bang on the noodle. The medics thought the slow awakening was due to the bruises to my brain causing the splattering of minute blood droplets; a bleed similar to a stroke. This would have implications during my recovery. I remained in a coma for four days, responding only to pain. It took 6 days for me to respond to a request to open my eyes, and over the next few days I started moving my limbs, though this appeared involuntary at first. This increase in movement, lead to me trying to remove the variety of tubes I was connected to. These controlled my breathing and fed me, I was given a tracheoscopy on the 11th. To counteract me attempting to pull out the various tubes, I had been successful, and had to have one fed in through my septum and another through a slit cut in my throat. My tugging on these till they came out, must have been painful for me, and disconcerting for staff, and certainly upsetting for my family. My hands were wrapped up in pillow case sheets by the nursing staff, and that seemed to curtail this activity!.

3:- I didn’t speak till 16th June, and then it was a single grunted un-decipherable utterance. On 19th June my wife and my brother in law, met with a consultant registrar, who reported that my recovery would take months rather than weeks. The speech and my left side would need extensive rehabilitation and physiotherapy, but that there was no guarantee how successful my recovery would be. Understandably it was anxious times for everyone who surrounded me. My life was no longer in danger, but the degree of my recovery, was far from certain.

I was transferred to a rehab ward in Cannock hospital on 28th June. My feeding tube had now been removed. I was now breathing on my own, having previously been on a ventilator, then C ’pack and finally an O2 mask. I was now being fed liquidised meals. By July I was speaking more clearly, but bizarrely in a variety of accents! I talked to my wife about ‘My wife’! I did not appear to realise how incongruous this was, "I'll tell my wife about that when she visits!" is how I responded to something she had told me.

My wife had to tell me my father had died a couple of years previously, “That is why he hasn't visited”, I said! I was becoming agitated because he hadn't visited! I was speaking but it was not always clear, understandable or make much sense. I could ramble and babble, so it was often difficult to follow my thought pattern, even if you understood the accent!

By July I was still not able to support myself, but was trying to stand and had a number of falls. The fall and head injury, had left me with a weakness affecting the left side of my body, unfortunately I appeared unaware of this paralysis. My mattress was placed on the floor for my use; but it was elevated again, as it did not deter me from attempting to stand up, and this was more precarious for me trying to stand from ground level. I was no longer on a catheter, having been fitted with pads, that I had the embarrassing habit of attempting to remove in front of visitors, even if full! My mother in law visited me at Cannock for the first time, and was upset about how much weight I had lost.

The accents continued, the Speech Therapist thought I was Welsh. I eventually spoke in a variety of regional accents, Yorkshire, Black Country, Scouse, ect. I also added a Scottish accent to my Celtic verbal repertoire. I had a new ward mate in the bed next to me, who was obviously of Scottish origin. I was babbling away in a North of the border brogue. My mum asked the feller, where he thought I was from? “I was just lying here listening and wondering that,” he said, “maybe Stirling”. “Well he was born in Staffordshire and has lived there most of his life” she revealed. It had not been unusual for me to attempt a variety of accents throughout my life, so it wasn't a new talent I had uncovered. Nor was a new language a new talent either, I believe this has reportedly happened in some cases of head injury! I was asked a direct question by a nurse “Are you well this morning Neal? “Qui” I responded. “Do you speak French?” I was asked by my wife, “Un petit peu” I replied. She was taken aback, and asked me if I knew what that meant, “A little bit” I correctly identified. I had dabbled for a number of years, on conversational French, having holidayed in Britani. We had actually planned to go France that August. Sorting out the holiday insurance, added to the mountain of tasks my wife had to take on. I had previously dealt with many of the homes finances, as well as much of the the cooking, most of the DIY and gardening. My colleagues from work proved themselves real bricks in the latter respect. They took it in turns to ensure the 150ft rear lawn wasn't knee deep, and the borders were not running wild. One colleague enquired why a patch of grass had obviously been left uncut? "That is his Wild Life Meadow." my wife replied. "Looks a bit of a mess' said Raz (nick name, for Firefighter Berry! ;) ), "Want me to trim it?" My wife had always agreed it looked a mess, and delighted when Raz, mowed over it! Though he has since told me, it took a fair deal of mowing, particularly the rare Orchids!!!! 

;) (Joke!).

My speech was a long way from being consistently intelligible, or understandable, yet on 8th July I delivered a cogent speech about “British Athletics”, to the people in the ward! Unfortunately only my wife witnessed it and was able to verify this, the other two patients in the ward were not really with it. She was surprised and shocked I had made so much sense, I even paused to ask if anyone had any questions, before carrying on! I amazed everyone again on the 20th July. I do not remember either event, but those who had visited me before it, and witnessed my lack of mobility, were astounded to hear; that when left alone, I had walked out of the ward, down a fire escape, and out of the hospital, via the fire escape (fireman!!!) I had gone to a stone mason, in the grounds and asked for a cup of tea. Fortunately he was on the ball, realised I was a patient, and phoned the hospital!

Apparently I had been fractious for a couple of days; I had told my wife, I was depressed on the 17th. I was concerned about the future and finances, getting in a lather, and couldn't be consoled. I had been very unsettled, and my medication had to be changed accordingly. Also at around this time I was the victim of an administrative error, the original food choice list had been mislaid. During her visit my wife noticed I had not quite finished my mid-day meal (dinner-lunch?), of Oxtail soup starter and roast chicken main.

“Have you eaten that?” she asked.

“Yes”. I relied.

“You don’t remember do you? You’ve been a vegetarian for 20 years!”

“That’s a shame” I said,

“Why?” asked She asked?

“I quite enjoyed that!!!”

The error was pointed out to the staff. Embarrassed, they apologised, and normal service was re-instated. I have recommenced my predilection of not eating anything that used to have a face!

Of more concern was my mother travelling on holiday to India with a group of friends the following day. My ‘Escape’ had left mum, tearful, and reluctant to leave to travel. Fortunately, friends and family, persuaded mum, I would be fine, and to travel for the fortnight, particularly as she had already paid and was going as part a group of walkers.

The next day my wife was called at home at mid-day, to be informed I was being aggressive with staff and they would be grateful if she could visit earlier than usual, as her presence might placate me. She was told when she arrived that I had, had to be restrained, as had attempted to clout staff. I was given something to sedate me. The staff were delighted to see her! It may have been that another chap in a nearby bed was upsetting me; a new arrival he was loud and swore rather profusely. The next day they moved me to another ward. In this ward was a feller who had also had a drunken roof disaster, that had nearly cost him his life. Understandably we formed a bond. I am still in touch with him and his family, and my friends often ask after him now. Although he fell from much higher than me, he had landed on his legs, and was therefore his lower body injuries were significant, though he did have some head injury and was suffering with the consequences, though not to the extent I was. His family were originally told his survival was in question and perhaps the family ought to think about how to cope with this eventuality. His continued existence on the planet was even more miraculous than mine!

When asked if I wanted sugar with a drink, I would invariably say, “yes”. I hadn’t taken sugar in a drink for 20+ yrs (Stopped when I ran out at University, and was appalled by the price of a bag of sugar, and did without, though it took me at least two weeks to enjoy a brew. My new room mate would tell staff to disregard my affirmative utterance, and not to add any, (he had 4 spoons in drinks!) If he didn’t correct me, I would carry on and sup it with no complaint. I have heard that victims of Traumatic Brain injuries (TBI’s) can find their taste buds radically altered; but I don’t think it has affected mine significantly. Ok, I didn’t even notice the sugar or chicken. I probably hadn’t eaten the latter for 20 years! Just imagine the furore that could have ensued, had I been a Muslim and given pork, or a Hindu, vegetarian for religious reasons!

4:-My bank were fantastic; my personal account was made into a joint account, once a hospital letter, they requested, had made my condition, and the likely length I would be incapacitated was made obvious. My fire service salary went into this account, and my wife had no access to it! I certainly couldn't remember cash point number, and was incapable making a recognisable signature.

I was extremely fortunate to have such a supportive family, and once the word got out and was passed around, I was visited by many colleagues and school friends. People I hadn’t been in contact with for years. Occasionally the hospital was like an impromptu school reunion, or a Fire station. My wife visited every day, and my mother did as well, apart from her holiday. Mum was, of course, allowed a fortnight break, and when being told of my behaviour, on her return, It didn’t make her feel particularly gleeful.

I can remember attempting to read my children’s books with my mum’s help, and struggling with even the simplest words. I also had difficulty identifying common animals in a picture book. Zebra, Giraffe, Lions, etc. I knew I should know what they were, I had been a bit of 'wildlife geek' pre accident, and was aware they were animals I should recognise, I just couldn't find the words.

“I bet you never thought that at 70+, you would be having to teach our 45 year old son to read, did you?” I said to mum.

“It’s what mothers do”, she smiled back.”

5:-Gradually things improved. My progress, both cognitively and physically, was erratic. I worked with the hospital staff on memory, speech, reading, on mobility, and gym work. I can only recollect going to the toilet and bathing independently, but this was certainly not always the case! I was initially paralysed down my left side, and used to fall when attempt to get up! My face was covered in bruises. With staff being over stretched, visiting family and close friends often used to take turns to take me to the toilet. Unfortunately when I had the pads removed I didn’t recognise the urge, and had a number of accidents. Raz visited me in the early days, and having to point out to a nurse:- “excuse me, Nurse, he appears to be leaking!” My mum and wife were a couple of times left, creased up with giggles whilst trying to supervise my visits to the bathroom; chasing me round the cubicle with a toilet roll!

I was discharged from Cannock on 13th November 20008, six months after my accident, Though arranging for carers to come in daily while my wife was at work caused an annoying delay of weeks, during which I became increasingly fractious. I couldn’t see the need for carers, and developed a negative attitude to hospital authority, social services and life in general. My wife exasperated by the delays contacted the MP. My memory had become much better, long and short term, though it was still variable; but I had remembered from my time (15+ years ago) with social services, that when an MP gets involved in a case, things tend to move! It did the trick and I was finally discharged (released/escaped!) On the day I was discharged my wife organised a surprise 'welcome' home party, attended by family. We arrived a bit late, as on the way home we had come across an incident, blocking the road, about a quarter of a mile from my house. A lad was lying in the road with his bike on the pavement. A large group were round him, and when people starting getting out of their cars to assist, they sped off laughing. My eldest son ran off and I wobbled after him. After a couple of hundred yards, they took a turn and I lost them, so I went back to the car. My wife in all the activity had not seen me set off, and had returned to car to find me not there! My son soon returned, he had followed the group, but had decided to give up a pursuit when they slowed to a walk and noticed him following them. The lad went to hospital in the ambulance, we turned up late, with a good excuse. It was GREAT, though I was a bit subdued! :(

Life moved on, I attended hospital rehab day care, a couple of days a week, and also attended South Staffs Headway. They had actually visited me while I was in Hospital; I was referred by my rehab ward, which had a contact. Headway is a national charity for people who have suffered Acquired Brain Injuries, Stoke, Aneurism, Tumour, Encephalitis, etc. My carers only came for just over a month. I think I probably needed the support initially, my wife had returned to work; her head teacher had been brilliant, and had given her leave from my accident till the summer holidays.

I was discharged from hospital at a weekend, when my wife went back to work. The first worker who came to support me, had a list of verbal information from me! “TV is on; settee is there; if I want a drink I will get up & make it, & ask you if you want one. When I want my lunch I will sort it, if you want some I will get it for you.” (I had passed my limited 'self care' assessment on the rehab ward! ;) ) Bit of a shock for the carers as they arrived with a list of possible duties, including:- Catering, cleaning, monitoring my behaviour, remaining to supervise me with my kids till my wife came from school! Supporting my personal hygiene, including bath/shower! One of my carers, who came at the end of the spell of care, has subsequently said that it was obvious to the staff that I had progressed beyond the need for carers. She remembers accompanying me on walks in the neighbourhood. I was anxious to regain my mobility, and had already set myself a challenge while in hospital, more of which later.

6:-During my time in hospital I had been on a variety of medication, including anti-depressants and Epilim (Anti-epilepsy); I fortunately never had a seizure. My recovery was slow, and was certainly frustrating (not least for my wife & family!). Walking, speech, confusion, mood and memory difficulties were all challenges for everyone; and the anti-depressants were appropriate for my mental condition at the time. My mood was fragile and variable, though I was weaned off the anti-depressants and epilepsy medication soon after leaving hospital. Frustration dominated my recovery, and still causes friction between me and the family. Word finding, and memory difficulties can lead to me flying off the handle, and throwing a ‘tantrum’, which would be laughable if it was not so destructive to family life! It was if the TBI had sent me back to toddler stage. I would stamp my feet if things didn't go my way, or perceived myself as being ignored. I was very egocentric, not considering other people's point of view. Six years on I still have difficulties in these areas. I have emotionally matured in respect to negative personal characteristics, such as mood, temper, egoism. Given time, I realise how inappropriate or uncalled for my behaviour had been, and apologise, unfortunately my thinking/thought time was, and is still slow. I have a short straw in pressure situations; this is, I believe,  common  TBI survivors. Frustration certainly creates ‘pressure’ for me; this is exasperated by the subconscious knowledge of how unreasonable my behaviour often is! It just takes me a long time to finally realise this and apologise! and even then, if you are subjected to unreasonable behaviour, it must become increasingly difficult to accept apologies! I believe 75% of long term relationships where one partner has a TBI end in separation, and if true, that figure certainly doesn’t surprise me, or my long suffering wife! In the Coronation Street Story of the Nick Tilsley TBI it mentioned TBI causes 25% of marriages to end in separation, but the less said about that story line the better! :( I am immensely grateful for my Wife's, and my families, understanding through all this, and I would be lying if I said such incidents are a thing of the past! I have become paranoid about being challenged, to the point it can be impossible to have a normal conversation with me! I see questioning my opinion as a challenge based on my medical history, and the time when I was experiencing cognitive difficulties, was making little sense, and you definitely couldn’t trust my decisions. I guess my analogy puts me at the truculent teenager stage! Being the father of 3 boys, 21, 18 and 14, lets us hope I can progress rapidly to a 'mature adult'! I am getting there! ;)

7:-While still in hospital, I had set myself a challenge. I wanted to walk The Staffordshire Way finishing on the second Anniversary of my fall. It is a long distance trail which joins up public footpaths, over 90 miles across Staffordshire; from Cheshire in the North West of the county, to Worcester/Warwickshire in the south; touching the borders with Derbyshire, Shropshire, and the West Mids. As I wasn’t walking outside the hospital at the time, Mum was understandably sceptical when I said I was going to complete the walk in three days, from 6-8th June 2010. She has a fairly extensive experience of walking, as a member of The Long Distance Walkers Association (LDWA), she has completed the LDWA’s annual 100m challenge walk within 24 hours, 12 times. Mother soon realised that trying to deter me was pointless. Like many TBI survivors I had little appreciation of the extent of my condition and was extremely stubborn. In his excellent book, ‘Touching Distance’, James Cracknell ‘characterises this as ‘Putting on Concrete Boots’, I certainly had mine on. Obstinate, doesn’t do it justice. My Mum was originally thinking she might have to do the walk with me, but a friend of hers, Keith, also an LDWA member, offered to do the walk with me. I trained extensively for the challenge, accompanied by my mum, and joined her and the LDWA on weekend walks. I started with a walk on Cannock Chase with my mum, before I left hospital, and can remember walking with my mum shortly before leaving hospital. There was snow on the ground, and visited the tree planted as a memorial to my father after he passed away. It was under 2 miles, but I had to rely on my mum’s hand to steady me at times.

8:-Over the next 18 months, my walking increased, and I even started jogging. I had difficulties with my Achilles tendons; They have affected my running since my early 20’s, and had, had operations on both legs tendons. All seemed positive for the walk, and I was massively assisted by mum letting my walking partner and I sleep at her house, before the event, driving us to the start, meeting us every 5 or so miles with refreshments, she collecting us at the end of the days walk, before dropping us at the collection point to continue the next day, having slept the night at her house! This support was invaluable, and if I had not had the support of mum, and her friend I would never have completed the first 20 miles, never mind the whole thing.

Mum had dropped us off at Mow Cop (The Start). That support she offered was invaluable, this was made clearer during the first 20 miles. My co' walker and I were accompanied for the first 17m, by a fire fighter friend, who mum had picked up from his house, on the way. He had done his basic fire service training with me 10 years previously, and we had remained in contact since. (He had visited me in the first few days of me arriving in Hospital and had been very upset at the condition he found me in.) Shortly after 10 miles, both chaps noticed I had developed a pronounced lean, they alerted me to this, but I was unable to straighten up. It was something I had been a victim of in my early walking post accident, so I had taken to using a pair or light walking poles, but had not seen the need to use them recently, having apparently overcome the problem! Fortunately mum still had them in the car, and Keith alerted her to my difficulty by mobile, and asked her to bring them next meeting point. Mum went one better, and rushed down a wooded slope we were about to climb, to bring them to me at about 17m. Invigorated by the poles, I carried on the first day adventure with a renewed vigour. We were minus my (blistered!) friend; he left us to carry on, shortly after my mum visited us with the poles. He had been picked up by his wife, being on duty the next day. He reported to his wife that pace had been fearsome, when she was derisive about the blisters. He also said to his wife he couldn’t see me completing it. The first day had been tough, hilly, rocky and damp in parts, and this was brought into clear focus, by the problems I had with my balance, so much so I finished the first day dispirited. I spent the evening worrying about how I was going to tell the people who had sponsored me I had packed in, and repay the people who had given me charity money up front! My partner was from North Staffordshire, and used to walking in the area so we rarely had any trouble navigating, though it was often steep, and boggy in some area's.

9:-The next morning, after a great meal and night’s sleep at mum’s, and the poles in my hands; the weather was sunny but cool, ideal. It was mercifully less hilly. To counter this there were a huge number of stiles, and before the day had ended I had climbed over about 75 of blinking things! I had recced all of the route, so we had no real problems with navigating, and it was fairly well sign posted. The last bit was within 5 of miles of my home, an area I was familiar with, used to walking, so I felt at ease. After the first days walking I had had a few blisters, and my feet were certainly a bit more tender by the second night, so for the last day, I donned trainers on my feet.

After feeling I wasn't going to finish the challenge, and being pretty gloomy after the first night, I started the third morning in high spirits. Much of the final 20+ miles was in an area I had not previously covered, and the signposting was not always as good as it could have been. I had not been particularly looking forward to the final day. I didn't know the area particularly well, and though it may be rather flat and boring. I was pleasantly surprised, but I struggled towards the last 10 miles, and by the last uphill 3 miles I was reduced to a slow wobble. My wife, mum and two of my children were there to see me finish, and cheer me up to the Triangulation Point, that marked the finish. I am lucky enough to have a Sister in Law who is a Community Nurse, and she visited the next day, to see if she could assist with my feet. I had significant swelling and blistering, and lost a couple of toes. She bathed and dressed my feet, and I took the week off from the Fire Service.

When I was discharged from hospital, The fire service had been fantastic. My area commander advised me that if I could make it in for a day a week, I could go on the modified duties, and I could return to full pay, it having been reduced to half pay after six months off sick, in November. I returned to light duties, cycling to work 2 miles away; but my one day a week didn't last long, but I still could attend hospital rehab' and the local Headway group. I had made attempts to regain operational capability. I attended training for new recruits 30 months after my accident, and was unsuccessful at proving my operational competence, mentally and physically, so was unable to return to my role as an operational fire-fighter. In the climate at the time it was impossible to find me alternative employment in the fire-service, and I managed to secure a job as a support worker for people with a learning disability. Not the ideal job for someone with the challenges that TBI leaves you with. Going from a job where public profile is generally positive and well respected. I was in a job where the people I supported, had challenging behaviour that often meant very negative verbal and physical responses.

10: It has been a difficult, arduous, journey to where I am now. And that is my primary reason for telling my 'Story'. To share my experiences of recovery, and to tell people what worked for me. 7 months after my accident I was told by a very nice consultant psychiatrist, that it was an arduous journey to recovery, but what you end up with at 18 months is what you will be left with. Whether he meant physically or mentally, I disagree on both accounts! Reading and writing has been a challenge, but has improved, and continues to do so. Both are slower than I was prior to my accident, but reading and writing are still improving. Cognitively I improve and I am million miles away from where I was 18 months post injury. I do not think I am in anyway ‘back to normal’, though I think that concept is fairly meaningless, as I am not sure if the term 'normal' really means anything. I am certainly calmer, outburst's are infrequent, and I believe I am calmer generally, and more tolerant than I used to be. I am less careful with 'political correctness', than I used to be, but when drawn to my attention, when I have committed a 'faux pas', I realise where I have gone wrong. Having a partner who is 'equal ops' trained is has lead to challenges.

11: I am a firm believer that working to get physical conditional optimal for people who have survived Brain Injury. I only base this on personal experience, and the fact I was so active prior to my accident may have a lot to do with this. After my Staffs Way challenge, I continued to work on my fitness. I began running, and in 2013 I completed the Stafford Half Marathon in 1.47.08, nowhere near my best, done in my 20's, 1.17.00. But considering where I had come from, not too shabby in my opinion.

I seem to have developed a bug for 'challenges', and have spent an inordinate amount of time, ensuring publicity and raising sponsorship. Nearly six years after my accident I cycled from Stafford Fire Station to Barmouth in Wales. I followed the route that my colleagues had used in Sept' 2008, sponsored to raise money for the Fire Service Charity, Air Ambulance and my family. They had planned to do the ride, and to raise money, before my recovery was doubtful,if I would ever return to work. They did it the most direct route, but it did involve country lanes, some hills, and two massive climbs. A challenging route, but it seemed rude not to retrace the route.

I have reveled in the positive attention and publicity my challenges have brought. I have allerted the attention of the local media to these events; and I have been shameless in chasing after coverage for my

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miracleman
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30 Replies
iforget profile image
iforget

Afraid I couldn't make it all the way through your very detailed intro (will try to break it down into more manageable chunks later) but just wanted to say hi....

CrazyCatLady profile image
CrazyCatLady

Hi miracleman!

What a story, and what a long way you've come since your accident.

Your account of your 'escape' from hospital brought a smile to my face - I can remember my 6'2" tall, skinny son J being convinced that he could just swap clothes with his much shorter, slightly more rounded older sister and walk off his neuro ward without difficulty (despite the fact that his foot injury made it impossible to walk at that time)! When she pointed out that his 'plan' maybe had a few flaws he just airily told her not to worry, he would pay the fine!!

Much respect to you for your work as a support worker - my husband used to do this and I know how challenging and difficult it can be at times even without the added complications of a BI.

I'm new to posting here too, but everybody seems really friendly and supportive

:-) xx

miracleman profile image
miracleman in reply to CrazyCatLady

Hi,

Had some 'moments' to! One day walked out of the ward with the intention of walking back to home, 12 miles away! Finally saw sense and returned, for another month!! I can remember this! About a month after the injury, certainly can not remember this, escaped out of a fire escape, crossed a road and went into a local stone mason's business and asked for a cup of tea! Luckily the bloke realised I was a sandwich short of a picnic, contacted the hospital, & said "are you missing someone?" It had been a very narrow miss with tragedy. My mum was due to go to India for two weeks, had been reluctant due to my condition at the time, and I did that! When she heard, she was incredulous, I had only just started to totter a few steps on the ward. I had gone a few hundred yards & down two flights of stairs! She had to be reassured of my safety, and have a stern talking too from family and friends, before she would go.

Neal

Flumptious profile image
Flumptious in reply to miracleman

I feel quite guilty, now, I never went for any wanders! I didn't know why I was in hospital, and I complained, but fortunately, I didn't try and leave!

Flumptious profile image
Flumptious

Thank you so much for telling us all that, MiracleMan!

I was also pretty incoherent, for ages, and I spent a similar amount of time in hospital and rehab. They put signs on the wall: "Pam is able to communicate by blinking: once for yes, twice for no. *This can be variable!*" I definitely can't drive (as I'm 'blind', officially), but luckily I was able to go back to my old job (after 18 months off!).

Did you remember all your children? I knew we had a toddler, but I really wondered why my husband kept bring a baby to see me, as well. Who was she? I had no idea she was mine! I still don't remember her, before 6 months after my accident (but I love her to pieces, anyway!).

miracleman profile image
miracleman in reply to Flumptious

Have three kids, but can't remember anything 3 months post accident. and only 1 month pre! Speech was limited, wife visited me every day and told me things about here day, etc.. She told me at something one time, and I replied, "That's funny, I will tell my wife when she comes!" I didn't always recognise my kids or family and close friends, I spent a lot of time away with the fairies!

Will chat again, glad you enjoyed 'my story'

Flumptious profile image
Flumptious in reply to miracleman

I am always thinking how easy it was for me - I was just lying in hospital, with everything done for me. My poor husband had a toddler, and a baby, and a wife in a coma, and then a wife whose memory was clearly in pieces, who didn't remember what he'd told her yesterday. It must have been terrible for him, he didn't know how much I would recover, if I would come home, if I would ever accept that that beautiful little baby was mine...

miracleman profile image
miracleman in reply to Flumptious

Often people say, "must have been terrible for you"!

Makes me smile, then I point out I was in hospital, fed, watered, didn't even need to get out of bed to use the loo!

My family were at home, visiting me, and trying to sort out everything I used to do; finances, gardening, most of the cooking, the cars, etc.! Who had it harder? which is probably why I am still egocentric! Used to be like a toddler, post accident, but most of the time I have it under control. I guess you understand! :)

Flumptious profile image
Flumptious in reply to miracleman

:-)

I just noticed, in your photo you are wearing a Headway vest. I have a couple of those, from when I did the marathon. I won't say I 'ran' it, because I just plodded round the second half, but hey, I raised lots of money for Headway!

The second time, they gave us transfers, to write our name on it. I wrote 'Flump'. When I heard someone from the crowd shouting "Go on, Flump!", I just smiled, and waved. But if they said "Go on, Pam!", I made a point of looking for them, to find out who it was: "Hi, Dave and Ally! God, I'm knackered! Thanks for coming! ..."

miracleman profile image
miracleman in reply to Flumptious

Was from when I cycled 106miles to Barmouth Wales from Stafford fire station, in May this year. Did it for South Staffs Headway who had helped me so much. I actually got it from when I did the Stafford Half Marathon for National Headway in 2012.

hayabusa profile image
hayabusa

That is an amazing story and a few of your escapades made me smile. Do you ever see the comedy side of your condition?

We talked about laughter and being able to have a laugh at yourself a while ago.

But thank you for taking the time to write such a cohesive story. Brilliant read!!!!

miracleman profile image
miracleman in reply to hayabusa

My wife came to visit me every day, one day the remains of the lunch were still on the plate. Roast Chicken dinner & Oxtail soup starter.

"You don't remember do you? You have been a vegetarian for 20 years!"

"That's a shame," says !

"WHY?" she countered!

"I bloody enjoyed that," I said, smiling.

I have recommenced vegetarianism. I have a few other funnies I will share another time. Got somat to do!

Neal x

Flumptious profile image
Flumptious in reply to miracleman

I was vegetarian, from when I was 13 or 14. I met a hippy at university, who was vegetarian too. We fell in love. Years later, I survived 16 months living in France, being vegetarian. But then my hippy boyfriend got a job in Johannesburg. His veggie-ness couldn't cope with the braai (the Afrikaans word for a BBQ is 'braaifleis'). I am afraid that, when I followed him down there, my vegetarianism (is that a word?) couldn't cope, either.

miracleman profile image
miracleman in reply to Flumptious

Veggie (Is that a word? ;) ) in France, a challenge if my experience is anything to go by! Only surpassed by Spain. "Soy, vegetariano", incredulous looks, then pitying smiles, and it would still come with HAM! :(

Flumptious profile image
Flumptious in reply to miracleman

It's irritating, on Facebook you can just click 'like', but here we don't have that option. Oh well, 'like', OK?

Danslatete profile image
Danslatete

Glad I'm not the only person that demanded to leave hospital! I could not get out of bed at the time by myself, but hey ho!

I would stare at my daughter and not say anything, maybe I was trying to figure out where I knew her from, I don't remember doing it so I've no idea.

I feel heartened by the fact that you saw the recovery as a challenge, it's kind of how faced it but I was pretty confused and found it very difficult to know what to do. If I was told to do something I would do it 120% and burn out after a short time so I had to learn to pace myself...I'm still working on it after 10 years, still work in progress.

I do agree that you can carry on progressing all the time.

I find I'm challenged most these days when I'm tired stressed or ill.

It's been great reading your story. Thank you for sharing it with us :-)

miracleman profile image
miracleman in reply to Danslatete

I am not sure I saw it as a challenge at the time, I am a stubborn individual, and have always had the attitude that if you told me to jump, I would ask you how high, then attempt to jump higher. It held me well during my recovery, though I am not sure the poor staff would agree with you, and I was terribly frustrated with my progress. I knew I had a degree, and remembered I had the gift of the gab, and here I was struggling to read and string a sentence together. I was on anti-depressants, clinically depressed, and had suicidal thoughts, something else the family had to deal with! I would love to meet that consultant, who told me that 18 months recovery, would be the likely extent of it, he did say some recovery after that was possible, but often limited! Irresponsible in my opinion, with depression being common in head injury! He certainly didn't know enough about me to realise that was the sort of 'challenge' I would relish.

Neal x

Tortie14 profile image
Tortie14 in reply to miracleman

someone wise says accept doctors diagnosis but not prognosis. She proved medical prognosis very wrong in several ways but she, like you, has a strong survior spirit. Parents of a child with cerebral palsy told would never walk but with therapy he joined in school sports day!

Torquay profile image
Torquay

HI Miracleman

Thanks for sharing your experience it gives hope to other people with TBI's and their families that initial long term recovery predictions which are often very negative and depressing can be positive and miraculous.

Wishing you continued recovery and a happy fulfilling life. Also thanks for your contribution to the fire service they do a fantastic job which I witnessed during an evacuation of elderly people from a burning care facility which I was working in at the time. All residents and staff safely rescued.

miracleman profile image
miracleman in reply to Torquay

Thank you for kind words! x Though I probably wouldn't recommend TBI survivors swapping the Fire Service, where public perception and praise is often positive; for Supporting adults with learning disabilities, where customer reaction is often negative, and praise not fulsome! But I have coped! In fact, (although I am unashamedly blowing my own trumpet.) I think I do a good job!

Danslatete profile image
Danslatete in reply to miracleman

I do the same with 5-18 yrs it's a challenge, nice to know there is someone carrying on the good work :-)

Sem2011 profile image
Sem2011

Wow! a great account of your journey. You have made me laugh, shown great determination , and a desire to break the boundaries of our 'prognosis' . I too was informed 18 months is to be where improvement stops, but also I have read James Cracknell s book. James quotes 'do not let anybody put a glass ceiling on your recovery'. Yes TBI has certainly increased my stubbornness, or was it there already, I cannot remember , but I am noŵ quite stubborn. I love your accounts of accents. I too said to my partner, 'why I they leaving me in the dungeons, I need to be upstairs in the hospital'. I had worked at the very same hospital for14 years, and the dungeons, or lower ground floor is the mortuary ! I too remember becoming very annoyed with a lady next door who constantly talked.

My partner has had to cope with me by himself. My parents are in denial. He parents are both deceased. My poor partner, Ian, I love so much, he has coped with my anger, tantrums, loss of my good career mornings etc. I nominated Ian for Carer of the Year 2013 as he was one of the finalists. James Cracknell presented him his award. It was a very emotional day. My Ian thought at first I was joking, and then when I spoke to my neuropsychologist when he was present , he thought then I still had become confused and it was jut for our county, East Sussex. He is very shy, and I am not sure he loved it his work colleagues recognising him in local paper, or the Dorcester award lunch with James Cracknell , but I wished to show him how much I appreciated the work and love he gave me. only us TBI families know the effect of the brain injury has on all love ones.

Candace8 profile image
Candace8

I'm sorry I couldn't read it all so don't know of out come, can't focus on something for that long. I'm just writing as there were a few things you said that I say, I've been there, the thing that jolted a memorie from being in hospital was the vegetarian thing. The giggles I have now, well I don't giggle now but the rare smile I have is huge. I too went threw the same thing, the hospital were told I was a vegetarian so when they liquified my foot for the tube it was all veg. The first thing I did on a home visit to my mums was ask for a steak, she had to cut it up for me. She laughed and said I was a vegetarian but all I said was, am I . My dad comes up which is over 2 hours drive away just to take me out for a steak lol

miracleman profile image
miracleman in reply to Candace8

Hi Candy8candy,

Sorry you can't finish it ALL! (Not surpised!!!) I am still editing

it and it will probably end up EVEN longer!

Quick update, (Sorry, have been in London with family for 4 days.) I am still married, lot are not! My kids are 13, 18 & 21 and doing well. I am alive and kicking, working as a Support Worker, running half marathons, cycling 100+ miles, AND STILL PROGRESSING/RECOVERING! (whatever that means ;) )

Candace8 profile image
Candace8

Gosh you do a lot, well done. I'm still in hiding in house mode. I never smile now so you did amazing well done lol.

Sorry, I can't get through it all either. Too long for my concentration. As you are still editing, please will you break it up into distinct paragraphs? That way we might be able to complete it, a chunk at a time. Really would like to read it all!

Thanks for sharing your story! I could recognise quite a few things too... Perhaps when the hospital consultants trot out the bits of wisdom they could be trained to say something like 'Well our job is coming to an end but your life will be very different and you will have to identify what you need so that you can access the support you require when you need it! Everyone's injury is unique, join Headway and you can expect x, y & z (esp depression). Even a friendly reassurance lie 'remember there is always help available; there are many people living in the aftermath of brain injury'. Sadly hospitals seem to be happy to wash their hands and GPs do not seem to realise that there is a ball to pick up. I am so thankful for the internet - without it I would not be here!

miracleman profile image
miracleman in reply to

TY Caroline, 2 years on and since the last comment, am glad my musings still create a bit of resonance, and people enjoy my waffling s.

Time well spent, they seem to have achieved their purpose, more than I could have wished for; started it as therapy for myself. The fact others have found it helpful is very satisfying. Reading about others 'stories' and experiences was important to me, hearing that others get something from reading mine is deeply satisfying.

in reply to miracleman

My you sound well! When life takes an unexpected direction it is inevitably stressful but if only we were brought up kn owing what to expect and that it is possible to manage, learn and improve things and the journey is not all in the valley of depression. My two YPs (young people) are now 21 and 18 and have seen and discussed so much with my deteriorating condition that I am sure that should they experience, first or second hand, such upheaval they will be equipped to cope.

I wonder if you would share your path and update us now?

miracleman profile image
miracleman in reply to

"I wonder if you would share your path and update us now?

"

Guess that is why I scribbled "My Story!" but for the last two years I have been getting on with life now, concentrating on my post fire-service career, only too well aware this could have all ended very differently for me and my family!

When I get time, I ought to update people, but unfortunately things have not been so action packed, but is certainly something to consider when I have some time off work.

All the best, Neal

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