Because of a post made elsewhere on here
Born with epilepsy.
First three months spent in hospital, of which at least the first six weeks were spent without a name. Doctors clearly marked my medical records, "it". All references are made with no name, just "it". "Mr and Mrs ........... should give some serious consideration to having it put down." How that was worded to the person I don't know. If it was worded the same way, how did they react?
A year late starting school, due to my parents being told I'd never be able to manage, or be accepted in a normal school. First day at school, I still remember the morning. I escaped, not wanting to stay, within the hour. Spotted as I made my bid for freedom by the head mistress. I passed her office window on my way out.
1977
First Saturday in March(5th, if you feel like checking), I'd a fit on my way home from the swimming baths. That was before midday, my next recollection is from early the following day. A day lost and the start of problems that have yet to be sorted. Placed on a new, to me, drug for the epilepsy, Phenytoin. This fit also stopped any further swimming, either at school or the local baths. I know the sign I jumped up to touch whilst walking back into town. Just don't remember landing.
This new drug/treatment prevented me from being given the same injections as every other kid in my year at school. I always remember them coming back with sore arms, some of the "harder ones" in tears. My arm was like a pin cushion due to repeated blood tests, needles never bothered me.
Secondary school, I was no different to anyone else. I may have been quieter than most and normally had my head buried in a book. But anyone who tried to make me feel as though I was in some way "not normal", due to the epilepsy, were soon put right. And the use of the "funny names" soon stopped. I had one fit at school whilst out on a cross country run that must have scared the teacher out with us. Phonecall, made from a nearby house, back to the school got a car sent out to pick me and two others up. When getting out of the car, one of the the two lucky ones who I'd been sat between wasn't quick enough. He ended up on the floor, with me running into school through a glass door, and onto the changing rooms. I was told there were no new marks on me, just those from where I'd hit the road once or twice. Cleaned up in the changing room and left to get on with the day. Not many came near that day. That afternoon I was told to report to the teachers office, and to use the teachers corridor. This last part was never a good sign at school. The teacher who was out with the class on the run explained what happened. My memory of that morning ended about ten minutes before they saw anything, starting again just before dinnertime, about two hours gone. I thought great this means that cross country/running/sports will now no longer be allowed. That wasn't the case, he'd be happy to have me continue in his classes.
In one exam, I got a 100% in the written exam. One answer marked as wrong, but others had as much as 20% marked as wrong when the answers were correct. I was more concerned about those who lost at least one grade than I was about the one marked wrong on mine. The school I think were more concerned about the one question marked wrong, denying them the chance of being able to say the teacher was that good. He'd officially retired the end of the previous year, but stayed on with classes in their final year to avoid disruption to the lessons caused by a new teacher starting. We as a class, clubbed together toget him 20lb of Quality Street as a thank you. He was a huge fan of them, and with the factory making them in town.....
I've watched one job go up in smoke, in 1987.
Most of my work has been manual, or engineering. That explains the arm and hand signal usage. Common in both, sometimes simple, but with many being standard use. There's nothing exciting or interesting about mucking out a cowshed on a farm. I've done what some may consider odd jobs. But someone has to do them. I can legally put S*** Stirrer/Shoveller on a CV. both jobs having been done.
The Phenytoin has meant that I'm not able to take painkillers such as paracetamol. Now in cold remedies. Antibiotics are limited, penicillin got me the number one spot in a ward when it was tried. Painkillers have had me in A&E. Even there it's not been safe. The last two times one was used, the results were a "severe reaction to the medication used". They stopped the heart in simple terms. I'd a broken ankle set with none used in 2000.
A further complication of long term use of Phenytoin is bone thinning. They've been trying to get me off it for the last five years now. This so treatment can begin. To date no luck. In order to be able to get the treatment I've been required to register as a misuser of prescribed medication. I didn't agree to that I'd not be considered. They think that the bone thinning, caused by prescribed medication, may be responsible for the CSF leaks which started in April last year. A clear yellow fluid(sometimes slightly red due to blood) running out of the nose. Often onto what is being worn, easier wash a clothes than a carpet. Or into what I may either be eating or drinking at the time. Bad enough at home, worse if happens outside or if I'm eating in a cafe. Like the fits, there is no warning, they just happen.
There'll be no more after me, due to cancer. Didn't stop one lass trying to claim that I was the father of her child some years later though. Solicitor just allowed her to dig her own hole, before producing the records proving it wasn't possible. The last Tuesday of November 2016, cancer was confirmed for the third time. Being the only male in a breast cancer clinic, there to be tested, makes you stand out a bit. So the last thirteen months have been a case of almost constant checks being made. October last tear started with two full body MRI scans. Being recalled to have the second. Turns out "a cavity" was found in them. I return to one hospital later this week and another next month, because of these two scans.
I've long grown used to the fact that the epilepsy would never allow me to drive. I'm banned by all UK airlines from flying with them because I can't provide the required 24 seizure free period. All travel is by surface means. Which means that I've missed out on some fantastic invites from relatives all over the world, due to the epilepsy. Sailing to Sydney would take a while, likewise America. Then there's onwards travel whilst there.
There's been the odd incidents along the way, with people blaming others for what has happened afterwards. Where there was no blame.
I've already had one trip in a hearse. Carried out of Midnight Mass, whilst on holiday. No ambulance available so the local undertaker stepped in. He even made a first for him, visit to see how "his passenger" was the day after. Something he's happy not to repeat, for anyone.
Coming to in A&E, on the floor, unable to move my head. The glue they'd been using to seal up the split skin on my head had set and was holding my head to the floor, and a leg either side of my head. Told to just get, I left a piece behind me, glued to the floor.
Looking like the Borg Queen due to a 24 hour EEG, and a 7 day ECG at the same time. It's not me in the picture! They were clued to the head(no chinstrap), with the wires running down inside the back of the sweatshirt to the hard drive recorder. Seperate ones for each test. ECG were down the front.
Whilst wearing just the ECG, walking back from the hospital(EEG removed), along a now very quiet, trying to work out what was wrong. Before realizing I'm the only thing moving. Before being "asked" to stop from a distance, put my arms out to the sides and make no sudden movements.
Anyone want to swap for an interesting, intelligent and worldwise life?
Born with epilepsy.
First three months spent in hospital, of which at least the first six weeks were spent without a name. Doctors clearly marked my medical records, "it". All references are made with no name, just "it". "Mr and Mrs ........... should give some serious consideration to having it put down." How that was worded to the person I don't know. If it was worded the same way, how did they react?
A year late starting school, due to my parents being told I'd never be able to manage, or be accepted in a normal school. First day at school, I still remember the morning. I escaped, not wanting to stay, within the hour. Spotted as I made my bid for freedom by the head mistress. I passed her office window on my way out.
1977
First Saturday in March(5th, if you feel like checking), I'd a fit on my way home from the swimming baths. That was before midday, my next recollection is from early the following day. A day lost and the start of problems that have yet to be sorted. Placed on a new, to me, drug for the epilepsy, Phenytoin. This fit also stopped any further swimming, either at school or the local baths. I know the sign I jumped up to touch whilst walking back into town. Just don't remember landing.
This new drug/treatment prevented me from being given the same injections as every other kid in my year at school. I always remember them coming back with sore arms, some of the "harder ones" in tears. My arm was like a pin cushion due to repeated blood tests, needles never bothered me.
Secondary school, I was no different to anyone else. I may have been quieter than most and normally had my head buried in a book. But anyone who tried to make me feel as though I was in some way "not normal", due to the epilepsy, were soon put right. And the use of the "funny names" soon stopped. I had one fit at school whilst out on a cross country run that must have scared the teacher out with us. Phonecall, made from a nearby house, back to the school got a car sent out to pick me and two others up. When getting out of the car, one of the the two lucky ones who I'd been sat between wasn't quick enough. He ended up on the floor, with me running into school through a glass door, and onto the changing rooms. I was told there were no new marks on me, just those from where I'd hit the road once or twice. Cleaned up in the changing room and left to get on with the day. Not many came near that day. That afternoon I was told to report to the teachers office, and to use the teachers corridor. This last part was never a good sign at school. The teacher who was out with the class on the run explained what happened. My memory of that morning ended about ten minutes before they saw anything, starting again just before dinnertime, about two hours gone. I thought great this means that cross country/running/sports will now no longer be allowed. That wasn't the case, he'd be happy to have me continue in his classes.
In one exam, I got a 100% in the written exam. One answer marked as wrong, but others had as much as 20% marked as wrong when the answers were correct. I was more concerned about those who lost at least one grade than I was about the one marked wrong on mine. The school I think were more concerned about the one question marked wrong, denying them the chance of being able to say the teacher was that good. He'd officially retired the end of the previous year, but stayed on with classes in their final year to avoid disruption to the lessons caused by a new teacher starting. We as a class, clubbed together toget him 20lb of Quality Street as a thank you. He was a huge fan of them, and with the factory making them in town.....
I've watched one job go up in smoke, in 1987.
Most of my work has been manual, or engineering. That explains the arm and hand signal usage. Common in both, sometimes simple, but with many being standard use. There's nothing exciting or interesting about mucking out a cowshed on a farm. I've done what some may consider odd jobs. But someone has to do them. I can legally put S*** Stirrer/Shoveller on a CV. both jobs having been done.
The Phenytoin has meant that I'm not able to take painkillers such as paracetamol. Now in cold remedies. Antibiotics are limited, penicillin got me the number one spot in a ward when it was tried. Painkillers have had me in A&E. Even there it's not been safe. The last two times one was used, the results were a "severe reaction to the medication used". They stopped the heart in simple terms. I'd a broken ankle set with none used in 2000.
A further complication of long term use of Phenytoin is bone thinning. They've been trying to get me off it for the last five years now. This so treatment can begin. To date no luck. In order to be able to get the treatment I've been required to register as a misuser of prescribed medication. I didn't agree to that I'd not be considered. They think that the bone thinning, caused by prescribed medication, may be responsible for the CSF leaks which started in April last year. A clear yellow fluid(sometimes slightly red due to blood) running out of the nose. Often onto what is being worn, easier wash a clothes than a carpet. Or into what I may either be eating or drinking at the time. Bad enough at home, worse if happens outside or if I'm eating in a cafe. Like the fits, there is no warning, they just happen.
There'll be no more after me, due to cancer. Didn't stop one lass trying to claim that I was the father of her child some years later though. Solicitor just allowed her to dig her own hole, before producing the records proving it wasn't possible. The last Tuesday of November 2016, cancer was confirmed for the third time. Being the only male in a breast cancer clinic, there to be tested, makes you stand out a bit. So the last thirteen months have been a case of almost constant checks being made. October last tear started with two full body MRI scans. Being recalled to have the second. Turns out "a cavity" was found in them. I return to one hospital later this week and another next month, because of these two scans.
I've long grown used to the fact that the epilepsy would never allow me to drive. I'm banned by all UK airlines from flying with them because I can't provide the required 24 seizure free period. All travel is by surface means. Which means that I've missed out on some fantastic invites from relatives all over the world, due to the epilepsy. Sailing to Sydney would take a while, likewise America. Then there's onwards travel whilst there.
There's been the odd incidents along the way, with people blaming others for what has happened afterwards. Where there was no blame.
I've already had one trip in a hearse. Carried out of Midnight Mass, whilst on holiday. No ambulance available so the local undertaker stepped in. He even made a first for him, visit to see how "his passenger" was the day after. Something he's happy not to repeat, for anyone.
Coming to in A&E, on the floor, unable to move my head. The glue they'd been using to seal up the split skin on my head had set and was holding my head to the floor, and a leg either side of my head. Told to just get, I left a piece behind me, glued to the floor.
Looking like the Borg Queen due to a 24 hour EEG, and a 7 day ECG at the same time. It's not me in the picture! They were clued to the head(no chinstrap), with the wires running down inside the back of the sweatshirt to the hard drive recorder. Seperate ones for each test. ECG were down the front.
Whilst wearing just the ECG, walking back from the hospital(EEG removed), along a now very quiet, trying to work out what was wrong. Before realizing I'm the only thing moving. Before being "asked" to stop from a distance, put my arms out to the sides and make no sudden movements.
Anyone want to swap for an interesting, intelligent and worldwise life?
.
for sharing your story. You have my deepest respect and admiration. 
mother she has lived a full and interesting life. Had she not been blessed with her Mother she would have been shunted aside. She has friends with Cerebral Palsy who have no social life. Their parents make no effort to socialize their disabled children. Shame on them. Many of her friends live a very reclusive life. Little or no social interaction. In my mind that constitutes abuse. People with disabilities like my Niece and you should never be denied access to society. You limitations are an inspiration to others. You have accomplished much. Shout out and say "Look At Me". "See Me". "See who I am instead of seeing my disability".