Living with TBI and isolation

What peoples experiences with isolation due to BI. My self isolation has been with me since a young age. I've tried alsorts over my lifetime to fit into society friends and family but no matter how hard I've tried or what I've done the isolation never leaves me..I cant socialize with anyone never have been able to really. It feels like your living in a glass box you can see what's going on but you cant engage with normal life or people. I've spent 37 years living in that glass box. I probably spend the rest of life struggling with isolation but I'm learning more each day. The only people I communicate with at all is my family unit until I found you lovely people. I'm interested to hear yor experiences with isolation👍👍

[cat3]

Your post has echoes of an exam essay I wrote many years ago. The syllabus demanded the title 'Breakdown' - interpreted in whatever way we chose.

I chose mental breakdown and depicted it as being trapped alone in an enormous, transparent cylinder with disinterested people to-ing & fro-ing on the outside.

Despite talking the talk and walking the walk in employment and with friends/family I've always been a loner at heart. But since my Bi some friends have drifted away (2 others died from Covid) and I'm finding the isolation a bit more imposing.

I was often called 'Cinderella' for sneaking off from groups of friends to be by myself but, though my dodgy brain is overwhelmed by excess stimulus and I'm mostly happy with my own company, the aloneness can feel disorientating at times.

I keep pretty busy and active but the emptiness still hits every so often. Do you have interests or activities to focus your attention on Stammers ? x

[Hidden in reply to cat3]

Thankyou for your comment. I've spent my whole life pushing myself to achieve Outdoor Activities is what I love the most but struggle to go anywhere on my own these days. I find peace when I'm in nature but I cant get out my 2 sons and my 2 granddaughters are my daily support they help me to stay focused. I used to be called Paul Daniels whenever I were out trying to socialize with friends the phrase "Now you see him..Now you dont springs to mind. I've learnt over the years that I'm actually fine being in my own company. The glass box I described is always there i think it will always be there I've spent most my life as a loner even though I've met 1000s of people from all walks of life I do prefer my own company as theres no pressure to be normal. How you wrote an essay is beyond me so well done 👍👍👍

[cat3 in reply to Hidden]

Such a shame Stammers that you can't get out into nature ; I find walking through the woods or along the riverbank so therapeutic.

Is your inability to get out & about a social barrier or one of mobility ?

I'm wondering whether one of your family could drive you to a local park or other beauty spot occasionally and walk with you for a while. Getting away from home, if only for short periods, can be empowering... x

[Hidden in reply to cat3]

When I had my car I could up and go without seeing or speaking to anyone since losing my car I've not left my house my car was my safe zone. Both my sons dont drive atm but my eldest is learning to drive as we speak. Weve spoke alot about if I'm successful with pip my son will be my driver if I arnt up to it..slowly but surely with the right support I can again get to the outdoors..

[cat3 in reply to Hidden]

Ah, I see. But hopefully your son will get his license and use you as an excuse to go here - there & everywhere !

I was very fortunate to have my license back 6 months after my Bi. Like you, I felt it was my safe space. But I now walk wherever I can although my poor balance limits the distances.

Good luck in getting your PIP award m'love. Cat x

[Pairofboots]

Hi. I think I can echo cat's pre injury personality. I was always happy being in my own little world. I didn't have a yearning to be part of a crowd. I enjoyed company, I wasn't antisocial, just could take it or leave it.

I have recently via the power of social media, made contact with an old school friend. It is strange that he described me in a way that I didn't recognise, attributing how much influence I had on him all those years ago, and throughout his adult life. Ok it is nice to think I had such a positive effect.

If I think about my adult life, I have had a number of positive reports of similar. But then I think about my my work life, it naturally influenced people, the patients I nursed, but the staff that have developed their careers that have cited me as their role model. All comes as an awkward revelation for me. I just did my job, and when I went home, I closed the door. I was just me, an unremarkable person that just blended in. The typical grey man.

When I had my stroke, at first I had a lot of support from "the professionals". At the time it was a comfort. But as the years have passed, that has disappeared. The natural contact I had with the grater society is missing. And for the most part, I the isolation means that for the time behind my own front door I can con myself that life is normal. Stepping into the world is a slap in the face of realisation that I have problems, and I can't wait to get back to the isolation.

Do I get lonely? Yes. I miss sharing life, the good, the bad, and the ugly. I miss the urgency of completing a task in a timely fashion. I miss the chat, the bouncing of ideas. I miss the times of letting someone else take the lead. I miss the mini celebrations of the perfect buttered toast, or the laughter when it is burnt.

I wouldn't say I struggle with isolation, it is what it is. There are days it is a friend. There are days when it becomes a niggle. There are days, it is a royal pain. I tend to think of it as good, I chose to not consider it as a foe. Tomorrow is always a good day.

[Hidden in reply to Pairofboots]

I can relate to what you experienced through life I too threw everything into a job and I did well in most of my jobs. The isolation I suffer with is my best friend at times and also my worst enemy. Social situations dont happen for me as im up against it as soon as its mentioned. My family are with me everyday and help me but the glass box is always around me. I love and hate isolation due to BI but I'm learning slowly everyday via this group that I'm not alone in all the problems associated with BI..thanks again 👍

[Pairofboots in reply to Hidden]

I think that we often forget that work is more than keeping the wolves at bay. However work transports you into a world with people and situations that only occur in that world. It is, even if you hate the job, a large punctuation in life, that is probably only equalled by sleep. When it is no longer there, there is a massive void. Even the most grumpy, and antisocial employee (every workplace has one), even if they put up barriers, they experience life by osmosis. It's almost impossible to replicate work life in any other way.

[Hidden in reply to Pairofboots]

Your knowledge and experience in all these areas is so enlightening as its helping me understand my own struggles in all aspects of life. I've had alsorts of jobs over the years. Working in that glass box helped me to put my all into my work all my jobs lasted a couple of years as I'd push myself into burnout and the job ended I struggle with conversations at work I never attended work dos or anything like that I just made up feeble excuses why I didnt attend. Doesnt matter where we go or who we are with the isolation comes with ya my last outing with friends about 14 year ago and was a complete nightmare. I'm starting to love the isolation these days it's much easier than trying so hard to be normal out there. Thankyou again 👍

[Pairofboots in reply to Hidden]

Remember to own the isolation. It doesn't own you.

[Hidden in reply to Pairofboots]

Love that quote pal your right 👍

[sashaming1]

It was a problem with me even before I got a TBI. But I've learned to live with it. It probably could help me by having some counciling or Psychologist visits.

[Painting-girl]

I like your good questions Stammers. You must have developed a lot of coping strategies over the years too?

Because I lost my job after my TBI, my isolation was forced by my retirement and then lockdown, I couldn't maintain the relationship I had at the time either - it needed too much energy (and it was probably too new at the time) .

I think I've been very lucky to have not had this BI until later in life though, as a couple of good friends locally from way back pretty much 'get it' ( if not all the time!) and I still see them regularly to talk to. I miss the speed of communication we used to enjoy, and it's a bit of a workout to keep up sometimes now, but I notice that it's getting easier than it was ( with practice or am I still improving ?) I find that while I don't marshall and formulate words so easily verbally ( it's still an effort on here) that I'm learning to be a better listener, and I think that has value on its own with all my interactions.

I've joined groups I think I can cope with (art classes) and found ones that are a bit too tough ( Spanish classes). I've volunteered for a few things -and sometimes I get headaches - but for me these things are worth it for the social contact and to feel worthwhile in my own right (perhaps because I live alone?) And I'm making a few new friends, and am staying connected with my extended family. I'm possibly maintaining better relationships because I'm not relying on my memory to send birthday cards but on a detailed diary and reminder system!

Interestingly though it was kindly said, one said she wouldn't know I had a brain injury ( I know!) and I wryly pointed out I'd had to have a sleep before I came out - and she very pragmatically said - 'well just have a sleep then'. And I realised she had a point, if that's what it takes, why am I bucking it? Why not just have the sleeps and carry on? Perhaps my almost obsession with 'not being who I was before' and telling everyone this, is getting in the way of who I can be now? If they like the me I am now, does it actually matter that I was different before? Or that it's often a huge relief to be in my dim, quiet flat on my own?!

This forum really reduces my sense of isolation though.

It doesn't hurt to realise that other groups in society are also isolated for one reason and another - it's not just us of course.

[Hidden in reply to Painting-girl]

I've done alsorts since my tbi..I became a Blackbelt in Karate by time I was 15 my parents put me in a class as i was fighting everyone after my TBI..My Sensai back then taught me how to control my anger at others so I'm guessing it's still with me..my karate stopped soon after I past it an I found a darker side of life.. addiction..I'll say no more other than carnage for 20+ years..thankfully I'm 15 years clean now. My boys were my saving grace when they came to live with me 15 years ago they are my absolute world so I think being a single dad for all these years as kept me focused and they continue to keep me focused..I didnt know where I was heading opening up about tbi..but I'm so glad I have as it explains EVERYTHING thankyou for your great comments1👍👍👍

[Painting-girl]

Sounds like you've been quietly doing a brilliant job Stammers, and I'm glad this forum has resonance for you - it helped me so much when I found it too, it made all the subtle stuff I couldn't even explain properly to myself, suddenly normal somehow 👍

[Hidden]

Thankyou my lads are 24 and 18 now and it's been an awesome journey with them when I opened up about my tbi they just accepted me as I am. We laugh and joke about my tbi at times coz I can say some strange stuff lol..I cant explain it to them properly and this group is helping me accept and share my disability ..I'm so thankful to you all for your awesome comments with my posts..I dont have to hide anymore 👍👍👍👍