My journey in disability…

Hi, I'm James a 51-year-old slightly broken Grandfather of 8 and back to being stand-in father to my 13-year-old granddaughter.

The Early years…

Let me take you back to the beginning I was born way back on the 2nd of December 1969 to amazing parents but due to a gap between children, my Sisters were 11 and 13 years older than me I had a good childhood until the age of 7 my first major accident I am told I remember nothing of this for reasons I will get into later. Anyhow I was a mad keen cyclist and was always riding around the estate I lived on it was safe to do so.

Back then hardly everyone had a car and I lived in a small village, not anything more built up. Anyhow, I was almost home but before my house was a series of 12 garages all in a row for the people on the estate. They believe someone backed out the garage fast and hit me. I was thrown into a concrete wall and well it sucked. I must have passed out for a few minutes because no one was around. Yes, they left me in a heap and must have driven off!

So I hobbled home but nothing seamed broke until I want to the toilet and well I passed blood now as a 7-year old that is scary as hell! I was rushed to A&E and then spent the next 6 months in hospital in 1976 the then hottest summer on record. Due to my right kidney being mangled basically, It was in 2 bits they tried desperately to save it with multiple operations and drugs but nope, in the end, it had to come out. They also discovered I was hyper allergic to aspirin and Penacylln both on the same day. Two baths with ice in it to bring down my dangerous temperatures were not a highlight of my stay..

Once realised my amazing father took me as a sorry your year sucked to the local cinema to see ‘Star wars’ starting my lifelong descent into science fiction and all things geekdom. I was already mad about computers…

Back to school but I was struggling and was labelled ‘Educational sub-normal’ No PC evaluations back then and told I would never active anything but my mother didn't believe it. She knew I was cleaver and there must be a reason to explain it all. So she becomes a pain in the educational department's backside for 2 years until at 11 I was assessed my an education phycologist a man that would turn my life upside down and around. He discovered 3 things I had no visual memory, I was dyslexic and had extremely poor eyesight. So glasses were purchased, I had help dealing with my dyslexia and we worked together to find a method so I could retain information if I could not retain anything visual.

It’s now called Anphantasia but back then it was simply no visual memory and I explain it like this I see a picture for 7 seconds I remember it then it disappears forever. I can’t visualise or imagine I see black when I sleep I don’t dream I see black. This affects everything from struggling with directions. To have a notebook with pictures of anything visual. I photograph or video everything so I get to keep some memories. The hardest thing is not being able to remember my parent's faces and voices. now handheld computers are fantastic. I suppose that’s why I have a weird affinity to the night and dark things and anything electronic. I digress. Well with hard work and lots of help I left school in the top 5% guess Mum was proven correct! Without her stubbornness that I inherited BTW, I don’t know what would have happened.

Everything was great I went to college studded computer science and repair and Cooking because mum insisted I had to know a real trade as this computer stuff wasn't a good job. So maybe Mum didn't call it right all the time!

My life as an adult whatever that means…

Had my first real job in a local town I was asked to go work in Austria by the head chef of the collage and turned that down, see I can keep bad calls too! To join this restaurant and it was bad I lasted 5 days… Found a better job in a local Hotel in the next village to where I still live with my parents. I used to cycle to work and cycle around the area as this was split shifts. Start at 8 am work to 2 pm and then back at 6 PM to when we closed hard long hours with low pay but I loved working there and stayed 2 years until it went bankrupt. Last 6 months we worked 7 days a week no time off I was burned out and borderline alcoholic. Working with an alcoholic head chef fantastic chef but he expected you drink with him…

So I decided I wanted an easier job so I went to work in a Psychiatric Hospital started off as a chef and worked nights fixing there computers. Well, eventually they worked out my wages as a part-timer was double my wages as a chef. So I become the first full time IT person, years passed I cycled everywhere for fun and was quite good even semi-professional in the cycling world. The hospital in the 10 years I worked there was bought more than a 12 times eventually bought by the Priory Group a big deal in the UK Psychiatric world they then had over 30 hospitals and units. I saw the best and worse of people there. Famous people and normal all with issues. I can’t tell you anything about them because I signed an NDA from hell…

I was head of a department as computers were more important and the hospital had expanded so I had 2 people now under me and then I was asked to become the head of the south-east region and I still cycled to work every day or in breaks but had to use my Motorbike to get around the region. Heh let's leave out all the broken bones over the years all told the broken bones count is over 30…

But I was getting bored I didn't like being just a manager I liked to fix stuff. Then an old friend headhunted me to set up his first retail shop. We worked hard on this project researched the heck out of the area and decided on a local town and this small shop right next to a well-known brand store. Heh, that’s Tandy you made us so much money with your stupid policies...Well, we did well in the first year we took just over a million pounds . It was going crazy I could no longer manage the shop and carry out all the repairs. So we imployed a trainee and a manager to handle the day to day running and selling as I hated BS’ing people. Heck, I could sell but I tended to give to much advice and didn't just sell the most expensive item…

Well, this was a mistake things started off fantastic the tills were ringing but friction between the manager and me started and things went dark… I knew he was setting me up so I started documenting all the lies, The relabeling used computers as new the overclocking to make them seem better than they were and lots more including cooking the books. Well, this come to a head in spectacular fashion one morning at 6 am I had the police on my doorstep I was accused of stealing. The interview lasted 3 minutes until they stopped integrating me as the enemy and suddenly the detective was my best friend. It was a huge case, in the end, my so-called old friend was fined almost half a million pounds!

So I needed a new job and wanted a bit of a change again and saw a local company asking for someone with It experience it was an industrial picture framing company. I joined them and found out I had a talent for cutting glass. Now picture glass is 3mm thick and comes in sheets 6 foot long by 4 tall. I spent 2 happy years helping this small company in every job going and learnt many skills. Around a year in working for them I met my now life partner Linda, she had been married 2 times before and had twins of 12 a boy and a girl and an older son already left home. Well, we become a family and I went from a man who never could have kids to 2 kids that I enjoyed being around…

Boom everything must change…

Now all good things come to the end and you're asking what about the disability hold on this tale gets dark I was still mad keen cyclist I was cycling hundreds of miles every week and even in the dead of winter in the worse weather, I would be on my bike and loving it. Well on the 5th of February 2002 I was cycling to work on a Monday morning after a great weekend. I had my headphones on as I loved to listen to music as I cycled along it was raining a bit so I had my expensive lights on. Now, these lights were like car lights I could have a low and high beam and they as normal were on low.

I was at the top of a small hill just before a small village school when I was suddenly struck and nest thing I was flying through the air listening to the Rolling Stones ‘Sympathy for the Devil’ still love the song! Well, apparently I was hit by a white van at approximately 60 MPH. Remember me telling you about the school well it was 8.45 kids everwhere and a 30 MPH zone!!! Because he was pulling back into the side to avoid a car coming in the opposite direction so he struck me in the offside of the van and I caved in an impressive dent I am told.

My spine wasn't crushed instantly from the first impact just wrenched violently and sent suddenly accelerated down the road. Thanks, Newton the rules suck when they apply to a human body you know equal and opposite momentum one. I had my work cloves for the next few days in my backpack, that saved me from a wheelchair. Well, They measured from the wreckage of my bike to where I lay later and it was over 100 yards! during my brief impression of Superman. I had time to watch the road fly pass underneath me, Think the immortal words well this is going to suck… It Did! The huge rush of air as I was powered into a muddy bank up that and into a ditch filled with water beyond.

Yes, the landing sucked I never felt pain like it. The location I now rested won't ever be a favourite on trip adviser 0 out 10. The driver stopped but just sat in his van. The car behind watching this all unfold in slow motion he explained later. He managed to not crash himself slamming on his breaks. Then run over to see if I was alive Ok etc and it was a friend who worked in the old hospital I worked in for years! He was a rock star called the police and ambulance and directed traffic around the accident until the Ambulance arrived and then the police. It wasn't until much later did he realise who I was as I was face down.

I must admit I sorta checked out for a bit until the ambulance crew managed to get me out of my trench dripping wet, crying in pain and going into shock. Well, one bit I always remember sitting in the back of the Ambulance them checking me over and stopping the bleeding from some gouges in the old head. I saw the driver sitting on his tailhook going grey and I knew what that meant so I pointed this out to the paramedics that opened the door had him in both arms and threw him onto the other stretcher it was amazing to watch and I did crack up. He was immediately put on heart monitors I was Ok because he was having another heart attack. His 4th in 2 weeks and he should not have been working let alone driving on the dam road I would later find out.

Well back to the hospital we go and then the day gets weird I can only remember bits as they lashed me up with morphine multiple times and each time I would ‘check out’ time would pass I would come round and rinse and repeat. by the 3rd time, I managed to stop the injection long enough to check my partner was informed and she had. That my bike had been picked up by my boss this bike was worth over 2 thousand and the police were just going to throw it into the hedge! Yes still bitter about that….

Anyhow they knew something was up as I was in so much pain the slightest bump would make me scream. Well, they x rayed me 3 times with inclusive results because of haven’t a clue, not a doctor! Well then the put me in the new CT scanner and I remember this clear as day. The doctor's voice over the intercom. Hold still James be done in a……. F’ing HELL GET HIM OUT NOW!!

I shot out of the machine and they literally start wrapping me to the bed with straps. All the time I am getting scared and just repeating what’s wrong… But it wasn't until I was on the ward in a special spinal bed. Tel told me I had fractured multiple bones in my spine. Now these are special air mattress over a normal bed that you're placed on then it’s blown up and it cocoons you can't move because as you do the bed pumps air in the opposite side stabilising you. I become special friends with that ceiling ever crack and dimple I knew as old friends after 7 days staring at the dam thing.

Now it turns out I had a spiral wedge fracture of L1 & L2 the biggest bones in the lower spine. The best descriptions I always remember from an old charge nurse. Thank you all BTW you're the real angles that heal far more than the doctors you see for minutes a day… Oops, blame old age I digress a lot, don’t I? Back to the damage take a coke can drink and enjoy then stamp on it you see how it compresses and the ripples and can deforms that’s how my spine looks now 2" shorter from compression now 3" thanks gravity.

This caused a lot of nerve damage and between my shoulder blades, I have more spinal damage. So I have peripheral neuropathy this basically means my nerve eat themselves gradually and I lose all sensations in my hands and feet just cold and pins and needles as well as other fun symptoms like restless leg syndrome and more. This slowly spreads until I will feel nothing what fun! It’s done a complete number on my digestive system lets just say control isn’t what it was… My bladder is well I sorta control it eventually after sitting down on the toilet convince itself to empty maybe.. I could self canulate but that way goes bladder infections thanks but no I will struggle thanks! Now I currently take 11 different medications to just be able to function like a 70-year-old.

The aftermarth…

The rest of the butcher's bill is chronic pain at the level of needing morphine pain patches to have any semblance of a life. Let me explain chronic pain everyone experiences pain if it lasts consistently for less than 6 months it’s acute pain and can usually be solved. Chronic pain lasts longer than 6 months and despite what BS doctors say or quacks with magic beans will try and sell you can’t be corrected. It really winds up people in chronic pain these stories of people never in real chronic pain that tell tales on the tv of how they were cured by whatever magic wo wo of choice. Then how everyone can be like this or the quacks. Nope your NOT doctors if you take pain control away from someone in chronic pain just because you don’t like opioids you're a quack not a doctor because you have just taken a massive dump on the first line of the hypotactic oaf. First, do no harm oh so pain isn’t harming hmmm yes sorry I help run a support group for people in chronic pain and let me tell you it’s bad in the USA…

Again I digress well I blame grandad diseases we allowed to ramble! Later about 6 months in they found damage to my eyes as well. I had to give up work and become medically unemployable at 32 now this is hard in anyone especially I liked working I loved to cycle both now denied to me forever. I managed somehow to avoid the depression so many in my condition find themselves that’s not a bost simple statement and let's move on…

We were told we it could be 6 months, a year, now 2 and I was hearing the same umms and maybes and getting fed up with it and demanded to know if I was crippled for life and then they admitted it was so. We got used to the new reality. My partner now my carer gave up work to be here full time. I never pressurised her into anything if you know her you should soon discover she is her own woman and I have no control over her and that's fine by me ;)

Another couple of years pass My mum died as I was in my early 20’s from Breast Cancer for the 2nd time. So I just had my sisters and Dad I loved my father he was the ideal father funny, cleaver and could fix anything see where I get my love of fixing and making from. Well, dad had his first stroke. he was still working 5 days a week as a gardener at 75 after retiring from a lifetime as a Master Builder. His amazing employer noticed he wasn't there at his usual 6.30 am so-called him he answered but was as I quote talking gibberish. So she called the ambulance and drove to his house. I was now living with Linda and the step kids in a small seaside town in the south-east of the UK. Yes, I can see France on a clear day and love to see how the sea changes colours and the ships going by. So he had had a minor stroke but it was a scare and he cut down to 3 days a week working Amazing man!

Around then 2007 I started feeling really odd everything seemed like it was in jello. I could barely walk around and getting washed and dressed could take an hour me panting sitting on the side of the bath like a broken old dog. Well, blood test after blood test nothing HA try looking at them, dumbasses, oops spoilers! Well, this goes on 6 months until one morning I had nothing left. I asked Linda to talk me to A&E and apparently, I looked dead deathly pale and could barely talk. Well, they took blood and next second I was back on a bed hooked up to bags of blood being literally squeezed into me 6 pints later I felt normal. The blood test showed I had 26% red blood cells it was the same as being in the death zone of Mount Everest your body is not getting the O2 it needs and your organs are shutting down. Well yes, the doctor had messed up badly not looking at the blood tests as it showed a steady decline.. I was also trying to complete a degree course just to keep my mind active! Yes in the end I passed and now have a BA in computer science.

Now add Pansepenia so innocent looking word it means I can’t hold B12 in my system you need this vitamin to turn on red blood cells being made by your bones. Turn that signal off well bad shit happens… I have to take B12 supplements every day and every 8 weeks I get an injection as a top up.

Dad has a major stroke at 81 while cutting his grass on Friday. I had a hospital appointment otherwise I would have found him as we used to visit with the now Grandkids as they loved great-grandad because he was a true family man warm and fun. Loved kids and played with them and gave them sweets ;) Well, we were all concerned but dad was deaf and could miss the telephone calls sometimes. but by Monday my eldest sister found him tangled up in his lawnmower. He was still alive he was one tough man he was outside for 4 days!

Yes, it was summer but still amazing well he eventually was released but could no longer talk or control his right side. so he learnt to eat again with his left hand at 81! Simply amazing. We become his voice because we could understand him sorta and by playing yes no games we could find out what he wanted. I managed to persuade my sisters despite being in poor health I should visit dad every day if he would come live in my town. They initially wanted him to go 20 miles away in this horrible rest home I would never want an enemy to be it was that bad!

Well, I won and dad moved to Bayhouse. Thank you all from the bottom of my heart Dad loved the staff and home I had not seen him smile in months but he did on the same day he entered his new room. For 2 years we visited every day but it was getting too much so we cut it down to 6 taking Sunday off and just calling the rest home. They looked after him like a king and he was respected and liked by all the staff and we become a feature being one of the handfuls of relatives that visited regularly most barely saw there, parents, a handful of days a year. We visited dad but talked to all the residents and would help them doing small things like getting drinks or finding a member of staff for them.

I was brought up better than that! Dad enjoyed still reading his newspaper every day. Playing cards with us yes he could not speak but play cards yup. He still won more than us too! Playing dominoes and a couple of the Ladies took a real shine to dad I think he was amused maybe a little flattered but it was only companionship. Why should I interfere? Well, we had an extra 5 years company with dad before his heart gradually could not handle it and slowly he slipped away peacefully with us all around him. Love you Dad miss you every day…

It’s now 2020 18 years after my accident and I am more broken I have missed out lots of medical stuff and glossed over more like I was abused at 11 not by my family by a supposed friend maybe I will write that separately as this is long enough. Way to much pain and medical science mist unpleasant at best and I won’t horrify the reader more I am still and always will be in chronic pain until I find out what happened next…

Our next adventure is since October 2019 my eldest granddaughter lives with us and were her legal guardians now. Due to family stuff with my Stepdaughter. My step-son moved away and now has followed me into IT and owns his own computer repair company 400 miles away and has a family of his own. I am so proud and love when he calls for help and advice, it’s so funny that he actively hated my job when younger and now what does he do? We visit a couple of times a year but because of covid this last year we have been sheltering. Linda because of age yup didn't tell you I was and am a toyboy did I ;) Myself health reasons duh and granddaughter has asthma so we all have been locked up most of this year. I just wanted to have something written down.

I have a few others and especially want to talk what’s it like being disabled and in pain. The spoon theory and sexual abuse and how it really messed up my mind. Heh, enough James thank them and finish already…

Fin.