Long term survivor/ denier

[dovrob]

Hi, 40 years ago I took a fall out of a window, landing 30 feet below- resulting in a period of unconsciousness, various broken bones, including my skull, pre and post-accident amnesia. I had to learn to walk, talk and learn to live again. I received excellent acute care in Wales before being transferred closer to home in Scotland where my care continued with speech and physio therapies, etc.

I then got on with my life as best as I could. I tried to go back to my old teenage habits but found family and friends less willing to put up with my behavior- which I never realised was unacceptable. I still wouldn't use my head injury as an excuse/reason as I continued to strive to be normal with no real idea of what normal was or how my behavior was affecting others.

I'm now about to lose another job as I'm realising that I'm not suitable for the position I've got. I think my problems are related to the effects of the head injury, but being so long ago and invisible I feel as if I'm in the minority who believe this.

[Mads1975]

Hello, I can very much empathise with you. I acquired my brain injury courtesy of TB meningitis 15 years ago. I had 3 months in one hospital and 1 month in a specialist neurological hospital. I returned to work 12 weeks after discharge and soon discovered that my behaviour was unacceptable to some of my staff and certainly my manager.

As well as being head of a number of departments I seemed to think that office comedian was part of it. The only trouble being that I was suffering from severe verbal disinhibition and had no control over what came out of my mouth.

After 2 years I was given I’ll health retirement. When I tried to interview for other jobs at clerical level I was constantly told I was over qualified. I gave up and enjoyed some overseas travel. Then I met my wife who persuaded me to try paid work as I’m “more than intelligent enough! I explained that it was the random routes my brain used that was the problem but said I would give it a go. I lost 3 out of 4 jobs within the space of nine months the other I left because I disliked the manager.

However I’ve now had 2 temp roles for just over a year and in July moved to a permanent role within a small Dept and a manager that is very understanding. So I would just say, as soul destroying as it can be, keep trying and you will find a job with patience.

Incidentally I went to see the career advisor at my job centre and she gave me plenty of advice on disability friendly employers

[dovrob in reply to Mads1975]

Thanks, Mads1975. To talk about being dismissed through undesirable behaviour is very open by you and something I can appreciate being through similar myself. A dark period of my life and one I never even considered that my disinhibitions may be a result of a fall that happened so long ago.

I've felt that for a lot of things I had to retrain myself and if you put excessive alcohol drinking into the equation the results are going to be unusual, to say the least.

I feel I have got a better handle on my behaviour now, though now have to look at my cognitive functioning which appears to be my latest problem

[skydivesurvivor in reply to Mads1975]

will have lots of challenging times ahead!! Just smile daily!! There’s a reason they wouldn’t let us in the pearly gates, u will find comfort when u are challenged with yours! Good luck. 🌝

[lcd8]

Hi there. Thanks for sharing. My medical issues started when I was 12 although are related to something I was born with. At 14 I needed my first operation. Like you I didn't think/realise it had affected me until much later on. I refused to recognise that my difficulties were down to this and convinced myself that I was 'normal'. As I got older (i'm 49 now) I came to the conclusion that I should just be 'up front' about my medical problems - they show themselves in little ways such as my balance. But other than that are hidden. So I self-declared and fortunately I have a very understanding employer. It does sound to me that its likely your issues are down to your old head injury. Others don't realise how brain injury affects you in all sorts of ways.

[dovrob in reply to lcd8]

Thank you Icd8 for your kind and informative words.

I'm certainly learning that others don't understand the various ways that a brain injury may affect behavior and cognitive issues. I worked as a nurse before and despite long and thorough medicals, nobody thought the injury was relevant apart from being told my double vision would prevent me from driving. Slower brain functioning, lack of impulse control, and difficulty processing information were all passed over by my tutors, senior staff, and most importantly by myself.

I'm now starting out anew with no expectations but curious to see where this part of my journey takes me.

[lcd8 in reply to dovrob]

Yes you're absolutely right. Most people don't understand at all. All they can see is what's directly in front of them. But I think there are underlying consequences of most brain/head injuries. And these things affect people for the rest of their lives. Best of luck to you.

[cat3]

Hi Rob and welcome....

It's hard enough in 2022 to have brain injury acknowledged as cause for behavioural & other issues. Fatigue, emotional and balance problems are often interpreted as being willful or 'difficult'. And 40 years ago understanding will have been much poorer, even amongst medical professionals.

In 1980, my cousin was sent home ('Good as new' according to medics) after many weeks in a coma from a head-on RTA. With no aftercare she struggled badly with caring for a young family & lack of understanding of her 'invisible' issues.

Your GP could refer you to a neuropsychologist for assessment & possible therapy. But Firstly you might like to download Headway's factsheets on the lasting after-effects of brain injury from their website - headway.org.uk or by phoning their helpline on (freephone) 0808 800 2244.

Stay around dovrob ; this is a great place for offloading and moral support. Cat x

[dovrob in reply to cat3]

Hi cat3 and yes 40 years ago it felt like a case of you're looking good now get on with things. I was lucky to have a supporting family, though I was unaware of what a nightmare I must have been to live with at times.

Thanks for your recommendations, I've got a neurology appointment requested but have been told the waiting time is 1 year, so I still, have till April to wait. The factsheet you mention I'll certainly be having a look at. I must admit I've been watching a few Youtube videos, which have given me a better understanding of brain injury, though I'm still unsure what part(s) of my brain are affected.

[cat3 in reply to dovrob]

I admit I waited 12 months for my first neuro review. I hope it'll be worth the wait for you as it was for me... 😉😐

[dovrob in reply to cat3]

Thanks, I've no idea what I want the appointment will bring but I'm hoping it gives me more knowledge and understanding of myself and the injury

[cat3 in reply to dovrob]

For me it was a delight having such an endearing and approachable specialist who truly understood the after-effects of brain injury. I learned so much about my symptoms and he arranged all relevant investigations to root out other possible issues.

Whoever you see will have your history in front of him/her, so ask anything which concerns you. x

[dovrob in reply to cat3]

That sounds wonderful and just what I'm looking for. Its great to feel opening up has srarted to pay dividends already. ☺

[cat3 in reply to dovrob]

👍🏻 x

[DebFl]

HI it is nice to hear from a 40year survivor!! You should take pride in that strength . I had a massive brain bleed with a brain herniation , requiring 2 craniotemies and resultng in 2 strokes almost 10 years ago. I can certainly understand your struggle.

I had a thriving law practice at the time I was assaulted and it was closed, that day. MY recovery is still ongoing. Although I have been able to care for myself and my service dog. I have chronic migraines and pain. etc. My physical appearance would never leave one to believe I was injured. That, as you know, makes it harder, People don't understand why I am slow at the check out line in the store..they bump into me and get nasty, It has taken me a long time not to react to them. MY colleagues do not call anymore.

As far as your work situation, if you have identified a behavior pattern that might not be working for you. For example, I would snap at people that would bump me in the store, now I respond quietly that I have a migraine. YOU might want to sit down and take a proactive approach and see what adjustments you can make, Write them down. They will become a habit. If these things are coming between you and work and social connections. This may be worth a try. I have been working with therapists for several years. Reactive behavior can be changed if you want it to. This doesnt mean you arent hurting, just that you want to get more out of life. My dog and I venture out several times a day, I smile because I am here for her. (even with my pain) I wish you a peaceful time at work

[dovrob in reply to DebFl]

Thanks DebFl for sharing your story and your words of encouragement. It's strange how I don't think of myself as a 40-year survivor. I never realised the time that had past till I calculated the years- time somehow has lost its meaning.

I can certainly identify with your tendency to snap at people. My rage would explode and then just as quickly disappear leaving myself and others wondering what had happened. Thankfully I appear to be in a calmer state at the moment, long may this continue.

My work situation is one I have to seriously consider. Realistically I'm in a job that I believe will prove detrimental to my mental health if I stay in it. I am though confident that something better will appear, maybe though with a lot of hard work and luck.

This is the start of this part of the journey of my life and I'm excited to see what transpires.

[skydivesurvivor in reply to dovrob]

grey matter sorting emotions as it spring cleans!! 22 years later, proud of my 1 neuron. Keeps me going, just have to say SMILE less frequently…..

[Painting-girl]

Hi dovrob, sympathies, must be hard to look at this from scratch after all this time. A neuropsychologist might be a useful person for some practical strategies, they have a lot of insight into the issues we deal with - might help you pick apart what are strong coping strategies ( as you must have developed quite a few by now) and those that might be less helpful? Perhaps talk it over with the Headway helpline (office hours 0808 800 2244). Good luck.

[dovrob in reply to Painting-girl]

Thanks Painting-girl and as they say better late than never, lol. Good idea about the helplkine, may give it a call on Monday.