Mourning me after a brain injury & finding a new calling

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I know I have made a strong recovery so far, and I’m grateful. But there are things I still miss about me prior to my accident. Effectively I’m mourning who I was before I had a traumatic brain injury.

If we all have talents, mine was my brain. So where does that leave me now?

I was never going to be a rocket scientist or the next Albert Einstein, but I wasn’t daft. Lets just say if you needed a sharp tool, you’d be pleased to have me in your box. Whilst I wouldn’t say I was an expert in anything, I was still a useful “go to” person. With descent listening and analysing skills, I could help people problem solve most situations.

But I don’t think that’s me anymore. It’s weird because I still have the same curiosity and tenaciousness. So I think I can help, but as things unfold I realise that either I don’t understand properly, or I just can’t see round the issue. There was such satisfaction to be had in feeling useful.

I’m mourning me even if no one else is.

Like most people who have gone through a life changing experience, some people have removed themselves from my life. And I understand why. We all have had someone in our lives who just changed. We might not know why, but it meant the thing that made them special had been tarnished in some way. Perhaps they got jealous and nasty about something, or stopped being the life and soul of the party so just weren’t fun anymore. Why it happened isn’t relevant, how it makes you feel is all that matters. I know I have been guilty of diluting people from my life when it feels like we’re on different pages suddenly. So I don’t hold it against those who have decided to move on without me.

I still haven’t accepted that something in me is different. So whilst there are people in my life who are proud of the progress I have made, I still disappoint myself.

A brain injury changes your life, and I'm mourning the one I have lost.

I know I have to move on, I just don’t know where to.

I might get better still, or I might not. What I need to do is focus on things I can develop. My problem is I’ve not ever really understood how I can improve. As someone who isn’t particularly practical (I absolutely hate cooking) I feel snookered without my trusty quick witted brain.

I’m sure there are others who are equally floundering at working out what use they are now. Of course we all do still have a use, but unless it drives by with lights flashing and bells whistling, it’s not always that obvious. 

UPDATE 2018 – I HAVE FOUND MY CALLING

I’ve always believed that everything happens for a reason, and I have now realised where my brain injury was trying to lead me. As I have had such a positive response to this blog, I can now see I can go even further into helping others who are affected by brain injury.

I am now a life coach for brain injury survivors and caregivers. And just I recognise what this confusing journey is like, I know I’m well placed to help others navigate their way through. For more information visit Coaching Services.

Have you been through this mourning process and come out the other side? Or are you still looking for the way?

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30 replies on “Mourning me after a brain injury & finding a new calling”

I think it’s because people think we should be so grateful to be alive we should over look the disadvantages. But it’s a natural process we have to go through. I just wish it came issued with an end date so I would know when it’s going to be over.

I don’t care so much about an end date…at least not yet (3 years in–I stayed in denial for a long time…”oh, one morning I’ll wake up and be perfectly fine again”…not)…I’m still looking for the end TARGET…who can/should I become? How do I become a valuable member of society again? There are so many choices out there…but each that I’ve researched has some sort of barrier due to my capabilities. I’m still searching for some sort of “fit” that will work for society and me.

It’s difficult to fit in society. Or do we just think we know what society thinks? Perhaps we worry too much about it. But I do understand what you mean because I feel the same.

Yeah, having a end date in sight would be the best gift. Not knowing if this is how my life _is_ now, forever, or if Im eventually going to fully recover is the most frustrating part of all of it.

It’s been three years since you commented. Did things change? Did an end date finally happen or what?

I have had 2 tbi’s. I can confirm that the period of mourning will end, at least it did the first time. The hardest part for me the first time was realizing that I needed to mourn. Sunday was the 3rd anniversary of my second tbi. I lost it. Sobbing and sobbing … the mourning is beginning.

I’m sorry the anniversary of your second TBI put you in so much distress. I too cry on my anniversary. It’s just a date and shouldn’t be any different from any other day, and yet it is.

It’s strange here I am reading this two or three weeks after celebrating the second anniversary of my ruptured aneurism and subsequent surgery. On the date I remarked to my wife is it correct to celebrate such an event in ones life, we decided that it should be a celebration of life, rather than dwelling on what has been lost. I seem to have two life’s now, before and after my ABI, thinking this way I find is just negative and does me no good at all. I have a life and are adapting to the changes within me, after all we change as get older and adapt to our strengths and weaknesses

You’re absolutely right David. I need to work on it. It’s probably that I’m mixing it in with the loss of my Mum and how Alzheimer’s is stealing my dad.

I had a stroke a while ago and I’m still mourning the old me. I’ve lost physical, mental and emotional energy so I can’t do much so I feel useless. I’m not lonely being stuck in the house but I’m starting to feel depressed. After almost 6 years I don’t think I’ll improve now. I want the old me back and I don’t know how long it’ll be before I know I can’t get that.

It’s such a contradiction. My accident was bad enough to affect my memory but not erase knowing who i was. And I’m good enough to do so many things, just not the things I so badly want to do. My values haven’t changed but execution is much different now. And truthfully if old me & current me met, I’m sure they would like each other, but I’m also sure they wouldn’t be close. Old me would like new me, but have to be strategic about time together, bc this new girl couldn’t keep up on the adventures. And the woman I am today would love and appreciate the crazy, fun, vibrant flawed girl I was, but would have to back away bc all that energy would flood the days processing capacity. It’s like being in a new country parallel to the old, things seem familiar, but I still have to find my way around. Everything is different now. E v e r y t h i n g .

Thank you for your effort and energy, it helps in so many levels

I love your description of what would happen if they met. It really does demonstrate how things have changed for you, but makes it clear that your core values are still very similar.

I think what I’m realizing now 2.5 years into my recovery, which involves a part-time return-to-work as a high school teacher, is that there’s definitely a mourning period that we have to go through. This will hurt! After all, we’ve experienced great loss!!! That being said, I also think that our entourage also has to go through a mourning period; especially if they want to be part of our rebuilding process! I find it really confronting when people remind me about the “good old days” when I’d do this or that and remind me how hard I must find it now to not be able to do those things! I have to remind myself that people aren’t intentionally trying to hurt me with these statements…. they’re simply holding onto the image of who I was before. I’ve had time to be sad, angry, and be in denial about the loss. This has allowed me to accept that “normal” has changed and that I won’t be re-integrating my old life, rather re-learning how to live with new realities and limitations! I have to give others the opportunity to go through this same process… which is uncomfortably necessary!!!

Well said Marsha, and say I completely agree that those around us have to go through this process as well. Unfortunately some people are unable to cope with our new “normal” when they realise that somethings are never going to be the same. But we have to forgive them for that and let go of what was.

Michelle, you’ve summed up my situation eloquently. We’ve been in touch before but I’ve been largely out of the online world lately as I’ve been struggling.
I was very positive in my approach to my misdiagnosed TBI, starting a FB group as you have, talking on Swiss radio & TV, doing a school talk & several walks for Headway. But now, 18.5 years later, I find it hard to see what I can do.
I finally had rehab this year which was great & improved reaction time & attention/concentration issues which I was really pleased by.
I’ve done a couple of courses on Coursera (they’re free & not desperately challenging).
I’m basically lacking a ‘purpose’, as I’m reasonably intelligent but lack energy & motivation.
I wish there was something I could do that I had the energy for. Like you, I miss the old me & all the possibilities I had.

I’m an OT who works with TBI survivors and I try very hard to relate this very message to them, that there’s “old you” from before your accident and now there will be “new you” after your accident and it’s not fair to new you to keep expecting them to become old you, because it may not happen. My BFF suffered a series of frontal lobe TIA’s at 38 that left her with an ABI. She was originally like you, sharp, smart and driven and now she compares herself to a toddler without her blankie. I remind her that all the pieces that make her who she is are still in there, but they are going together in a different way to make a new and slightly different picture. She is learning to accept that her brain changed the rules of living her life mid-game and she’s gotta figure them out as she goes now. I’m proud of her achievements and those of all my patients. Thank you for sharing your experience and normalizing such a hard thing to go through.

Karen you and your colleagues have the ability to make such a difference for brain injury survivors, and from this small piece you tell me about how you reassure your friend shows what a gift you are to all your patients. It’s not easy to see a person go through such challenges and it takes strength and empathy to but able to offer the guidance that you do. Thank you for choosing this career.

I found this group/site/safe harbor, just two days ago. When I started reading through the information and spot on posters, I started to cry. I have 3 documented TBI’s and they happened years ago. I don’t know who I am still, because my memory is stuck (literally and figuratively,) in the time of my injuries. I want to go back in time and yet there are attributes and talents that this After Injury Me has and is, that I really like. Pre Injury Me was a talented, brilliant and amazing person, but she could be thoughtless and too ambitious.
Sorry to ramble, so grateful to find this community and Michelle. Thank you and may all the best befall you.

Oh Alyson, I didn’t mean to make you cry but I hope that it was a relief to know that your feelings are valid and others understand what you are going through. In time I have found acceptance but it’s not as revelational as some people have you believe. It’s little by little and still I have my moments of missing who I was and who I would have become.

Alyson I hope you find comfort here knowing that there are others out there who understand how life can feel like a battle 🤗

I wanted to make a poster out of the line you wrote about, “I know I need to move on, I just don’t know to what.” That is it in a nutshell. I am 6 1/2 years after a stroke that has deprived me of a lot of brain functions. At the time my younger son was 18 my older daughter was 20. They were raised, I had been a school principal for 11 years, and I had a doctorate degree, so even though I was only 44 I thought I should just die. I have done most of what I wanted to do, so I may as well. Because this was really hard! I couldn’t walk, swallow, talk correctly, think of the right word, form memories correctly, none of that.

I did not recover. I still have most of these problems, and can’t work or drive. These problems are invisible so people assume I am OK. That makes me a little bit mad. I almost wish you were obvious. I’m not OK. And I just don’t know what to strive for.

But I love, I love reading this! Thank you.

Melanie, I’m so sorry that you have not been able to return to your profession and there are countless people that are therefore being deprived on your skills. However, please battle on. Whilst you may free you have lost your purpose, it’s amazing how we can touch ours lives even when we don’t realise it. Working in the teaching profession gave you the opportunity to make a positive difference for others in a clear and measurable way, but we all can touch someone in ways which are much more subtle. Even just being the person who noticed a stranger and smiled at them, you could make that persons day and give them the strength to carry on.

I’ve only just found this blog and it all made so much sense to me – suddenly there were people who understood! I am 3/1.5 years on from a stroke and whilst I have and continue to improve through sheer determination and hard work, everything you wrote resonated with me.
I was a secondary school teacher and managed to go back part time after my stroke but then came the pandemic and I had to come to the realisation that I could no longer do what I loved. I retired last year, discovered my creative side and became a volunteer for the Stroke Association. I can be proud of myself. I try to be positive, have fun with my disability (I have a very sparkly stick) and always try to show the good me but I do worry that someday it will all fall apart! So I live day to day with drive and the crazy determination to do everything I can, over compensating for my loss. I just know that life is lived in an invisible lead suit and I have to deal with it!

Hi Jo, I’m sorry you had to give up your career although I’m sure you’re doing great work with the Stroke association. Your spirit and determination sound brilliant.

I had my stroke in 2020 I’ve made a lot of improvements but I still seem to suffer from brain fog and balance issues. They get better and then something happens like Covid or I just had Major surgery in the right back with me like all friends, although they’re not friends. And it’s so hard to explain to people what’s going on in your head when you look just fine to them. I’m just feeling stuck right now

I understand, it can make you feel so alone when people don’t appreciate what you’re going through. Brain fog can be both frustrating and crazy. There are still times that it can make me feel like I’m losing my mind but thankfully they are getting shorter and less frequent.

Hi,
Thank you. It’s been 3 1/2 months since my accident, I’m finding myself in the middle of trying to recover but always want to be who I was. It’s hard to realize I may not heal or go back to the person I once was.

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