Learning to Live with Epilepsy

The Boy’s life grows infinitely smaller

I haven’t talked about the boy for a while. I thought it was time to tell the final part of his story which will bring us up to present day. I left you where he had just been diagnosed with epilepsy. Grand mal and Petit mal storming full force and wreaking havoc with his life. All the plans he had made for his future came to a grinding halt and his life turned upside down and inside out.

At 19 he was in full time college studying IT and Web design, he was also about to start driving lessons and he was trying out for the GB team and had just started training with them once a week. It all stopped.

He couldn’t concentrate in college and missed so much lecture time that he failed the course, he couldn’t retake it because he would have had to start right from the beginning again because the college system had changed. He would have to sign up for a course he had already completed which now incorporated his course in it’s second year and he just couldn’t bring himself to do it. He said, ‘What’s the point? I will only be ill again and it will all disappear again. I will fail another course and get no further on.’ I can’t say that I blame him. His concentration was at an all time low and he was in a downward spiral mentally for a while. He was tired of fighting. He couldn’t focus on his basketball, he was having random absences during training and at that level with GB it was dangerous for him to be on court. He decided he should just focus on his club basketball for the time being and look at International level when his epilepsy settled down. He couldn’t take driving lessons either because of the absences (petit mal) so he had to hand in his provisional license. He was effectively grounded indefinitely.

Despite all of the struggles with his health he managed to stay cheerful enough. We learned pretty early on that his epilepsy was stress based. If he got stressed out he had an absence. The meds he is on maintained the grand mal seizures and fits but the petit mal was making appearances on a frighteningly regular basis. The doctor decided he should take an extra tablet every day to combat the absences. Great, now his quality of life disappeared out of the window completely. 5 tablets a day was guaranteed to turn him into a zombie. He would sit staring at the television and had no interest in going to basketball at all now so I weaned him off the 5th tablet and he came back down to 4.

Gradually he became more himself again and we changed Basketball clubs and he started training with a new team. It wasn’t long before he was back in to the game full swing and going for it. He was playing back to back games for the club div. 3 team and div. 1 team. He was in his element and Basketball once again took over our lives. We travelled the length and breadth of the UK jumping from one ball hall to another pretty much every weekend and training three times a week. His absences were still kind of out of control but after a lot of observation about what was going on in his life when they happened we began to get a clearer picture of where the root cause was seated. Stress.

Finally we worked out that if we managed his stress better and I could catch it before it got to him, he could reduce the amount of absences without the need for further medication. The doctors were not pleased at all. ‘The absences disappear with the 5th tablet, why won’t you let him take it?’ they would demand to know!

‘Because he bloody disappears with the 5th tablet! I want him to still be here not monged out like a zombie! He has to be able to function!’ I replied!

One Doctor had the utter audacity to say, ‘well, he is disabled, you do have to limit your expectations for what he will be able to do as he gets older. He would be better if his medication prevented the entire epilepsy. At least he wouldn’t be dealing with that as well.’

F**k him. The Boy would live his life despite their best efforts to prevent it.

None of what the doctor said made a jot of sense to me. I couldn’t fathom where the hell his head was at with his thinking and I promptly told him to go to hell in a bucket of fire and get the hell of my son’s case. He wasn’t fit to practice!

I had many such conversations with many different doctors over the next few years until the boy turned 21 and fell ill again. This time he spent his 21st birthday in hospital being monitored for inexplicable bouts of sickness. No one could explain it, no one really wanted to try. After a week of inconclusive testing he was sent home and declared fit again. Except he wasn’t fit. He was far from it. He was on antibiotics almost constantly, as soon as he came off them he would be sick again and we would be right back at square one. No one was looking for the cause, everyone just wanted to treat the symptoms and blame his disabilities, or blame a UTI (urinary tract infection). Have some antibiotics.

This was the second year of a five year battle to get someone to listen to me and diagnose his failing kidneys and dead bladder. This was almost the end for the Boy. Almost but not quite. Only one Doctor listened and he saved his life 5 years ago this year. I have already written that part of his story, right back at the beginning of his journey. That was the reason for these the BOY posts.

We are still dealing with the aftermath of those ignored 5 years. The boy no longer plays his beloved sport of Wheelchair basketball, he hung his wheels up after he collapsed on court during a match and the doctor said he couldn’t explain it. He must have a UTI, here have some antibiotics and come back in a week if you are no better. Welcome in the boy constantly washing his hands to the point of blistering to try to prevent infections/germs causing more illness. Here comes a still active case of mild hand washing ocd on top of everything else. We have it down to he can wash his hands ten times a day, we are working on getting it down to 3 times a day.

At least you are not in pain young man! The doctor said to him one day when discussing his health with him after another random attack of sickness.

Oh for F**ks sake, don’t even get me started! I couldn’t even be bothered to correct the ignorant idiotic man.
So, this brings me full circle and to present date with the Boy and his health and how Dog came to be in his life and how he has sketched out a new life for himself within the limitations of his health. He has developed an interest in photography and walking the dog for hours along the beach near us. At least he hasn’t given up.

We are both exhausted and just rumble along these days. We have no expectations of greater things than he wants to achieve, for me the fact that he wakes up every day and is still with me is all I need to put a smile on my face and we laugh, a lot, about everything and anything because that is better than being bitter and disillusioned with life. The Boy is now a Man and I am proud to say he is my son.
I made him. He took what I made and made it perfectly imperfect. That’s good enough for me.

He is and always will be my Perfectly Imperfect Boy.

Perfectly imperfect ‘Dog’

Published by gemstrong63

I'm embarking on a journey of discovery into the world of self spanking, spanking and being disciplined! Step inside and join me on my rollercoaster ride of self-spanking and self-discipline. I get taken in directions I never expected to, I get bruised and satisfied, shocked but delighted, spanked by myself, spanked by my window cleaner and his wife, spanked by my neighbour, spanked with a spanking machine and that's just for starters. Be aware. I take a side step out of the diary to give you a window into my real life for a little while, it may help to explain why I need the painful pleasure I seek. Don't be afraid to come in and have a read, It is all consensual and I love sharing my experiences with you.

11 thoughts on “Learning to Live with Epilepsy

  1. Yeah but those dumbass doctors didn’t break us. One of them actually saved him! Who knew? In the midst of all that stupidity sat a diamond with a wealth of understanding and knowledge and he used it wisely. Because of that Doctor, the Boy is alive and doing quite well these days. He is 30 at the end of March this year! Not bad considering he wasn’t supposed to make it past 2 according to his very first Doctor’s dire prognosis when he was born.
    I can’t believe I’ve actually come full circle with his story. I know there is an awful lot missed out, but I genuinely can’t write anymore. Besides, the best part about his story is that he is alive and still being perfectly imperfect! 😊


    1. Thank you Hal, I will of course add to his story as and when events take place, it’s been a bit of a rollercoaster ride writing it all down and telling his story but I do feel better for sharing it, it’s been cathartic in the long run so thank you for encouraging me to do it. xx

      Liked by 1 person

  2. I’m sorry it always comes down to this.
    I’m sorry it always comes down to impossible choices.
    I’m sorry,
    after so many battles won,
    so many hurdles overcome…
    I’m sorry there’s always a bastard reset button…
    and so many who only see the button.

    Grateful for you, though.

    Liked by 1 person

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