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Brain injury blog by survivor

Brain injury blog by survivor



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Brain injury blog by survivor

Brain injury blog by survivor



Relationships vanish magnifying the trauma of brain injury

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Nothing about living with a brain injury is easy. But time and again I hear how survivors feel abandoned by their friends and family. For anyone it is difficult when key members of their social network do a vanishing act on them. But when your world has been turned upside down, and it’s void of those relationships, it can be soul destroying. However, that doesn’t mean they are bad people, just that they are struggling too. I have written in two other guest blogs about how not long after my car accident, my Dad was diagnosed with Alzheimer’s (a form of dementia).

Maddy at home – Alzheimer’s  where I try to explain how I tried to support his independence in the early stages of his condition.

The brain injury hub – One decision away from a different life – I touched on how my experience of brain injury gave me an advantage when trying to understand what he was going through.

Effectively I have walked on both sides of the cursed coin. And I can tell you, they are both difficult. I have made loads of mistakes, and I’m not proud of them. But I’m hoping I can help those who are questioning others behaviour. I’m not going to attempt to solve the issue, because I can’t. But perhaps I can help people forgive and begin the next stage of their journey.

Facing a brain injury with a loss of relationships

When something bad happens to you, or you’re just feeling down, most of us have someone who we turn to first for support. For me, which it is for many, that was my Mum. But she passed away suddenly just 3 weeks after my accident.  I’m still heartbroken about it, but at least I know she didn’t abandon me. So the pain I have felt in the absence of other key people of my social network has been different. I’ve gone through several stages in my grieving for these lost relationships.

  • Denial – To begin with I made excuses. It’s not that they were avoiding me, it’s just that they were busy. Don’t worry, when they have a moment they’ll be in touch. This happens because you have to pace your sense of loss, and as you have so much to contend with you park this issue for now.
  • Anger – When I finally had to admit some individuals were not going to see me, or pick up the phone, I became angry. This is just a part of the healing process. I know I would gladly have those people back, and would now welcome them with open arms. But you go through anger just because you care and miss them.  You feel let down and I was obsessed with the feeling of injustice. Embrace it, you need to express yourself. Just don’t shout at that person. Maybe privately write it down or go in another room to scream it out.
  • Bargaining – Next we find a way to blame ourselves. I’m grumpy, snappy and take forever to find my words, so I’m terrible company. I wouldn’t want to have to deal with me. We are trying to find a way to identify the problem, so we might be able to find a solution. But the reality is, sometimes the decision is not ours to make. We might not like their choice to go on without us, but that’s their right.
  • Misery – I was so sad that those relationships were missing after my brain injury. This added to my depression and made me question my self worth. In a way our nervous system is just trying to take a well earned break. This is to give us a chance to adapt. Whilst this is painful, it is necessary in the same way the Australian bush experiences regular fires. It clears things and allows space for the next stage of growth.
  • Acceptance – It’s not that I do or don’t agree those people should have walked away from me. But in the same way I have had to accept my Mum isn’t coming back, they have made their decisions and I respect that. There might be some learning points, or there might not. Either way, one just has to move on.
When you have been through a threatening experience that has changed your life, that's when you need your friends the most. But what about when they turn their back on you?
My blog on living with brain injury: How some people in your life can't be there once your ill.

How it feels facing a brain injury survivor

I have had to witness my Dads’ decline. Hopefully for many survivors they will have had a period of recovery, but may still have bad turns. Even though I can relate to his struggles, I have at times forgotten how he is different now. I just expect him to be the same, strong, clever, funny man he has always been. So when he says something silly, or keeps asking me the same thing again and again I can become frustrated.

There are times that I just don’t feel I have the emotional capacity to give him my patience. We never know what others are facing in their lives, and I know there are times I don’t call him because I know at that time I don’t have any more to give. I feel terrible about it, but when I’m drained I can do more damage than good. I might snap at him and that isn’t what he needs. So I think it’s better for us both if I retreat until I can have a more positive effect.

I am the youngest of his children, but as his power of attorney, I have now swapped roles with him and become the guardian. However, he is still fiercely independent which can lead to him picking the wrong battles. He wants to feel in control of his life and will refuse help. I know I have also been guilty of cutting off my nose to spite my face. Sometimes when he is like that I think In that case, why do I bother? I can be left temporarily feeling undervalued, and of no real use.

In fact I am grieving for the person he used to be. And believe me that’s a real challenge. In many ways I’m probably not meeting that challenge very well, but I’m trying. So perhaps those relationships we have lost happened because they care so much, they are grieving for us. In time all we can do is forgive, and open our hearts to accept our future.

I think this is a lot to go through, but on top of all that in Confess to pressure: being a voice of brain injury, I hit my full capacity.

Do you think your are or have been grieving for the loss of your relationships after your brain injury? Or am I wrong and they are just selfish?


25 replies on “Relationships vanish magnifying the trauma of brain injury”

My husband left me with two children ages 6 & 8. Two years after my car accident he can’t accept I’m still sick with my invisible injury.

Unfortunately as they haven’t experienced it themselves some people just can’t imagine what we’re going through. That’s why I think it’s important to raise awareness so we might help people understand better.

They are selfish. People won’t sacrifice their thoughts and ways. It takes an extraordinary person to really understand.

I hear you Leon, and I do agree that those who are able to show empathy not sympathy are special.

I’m not the same person by a long shot. If I had to pick between this me and the old me – I’d pick the old me. It’s hard enough for me to get along with this me that is mostly the opposite of who I was but I have no choice. I don’t think people need to stay in touch with this person – they never would have been with this person, I am someone different now. I don’t think it’s fair to feel that people are wrong to walk away, sucks for us, maybe – but we can’t want everyone to put up with things they don’t want just because we have no choice. I was the person who got people together, organized things, made things happen, was super active, full of energy – those people needed a person to step up and make things happen. there is some note about seasons, that we are in each other’s life for different seasons, well I am in a very different season now. I can’t fill the role I had in those friendships to be honest I don’t know how to have a relationship with some of them at all as this me has nothing to offer that they need. We are told very often there is the old us and the new us. It’s not like we are the same person – we are not, or at least I’m not. So yes we lost our self and will have to find a new role with new friends. I get along very well with my BI group. One person told me they have trouble being around me because they have no idea how I manage dealing with all I have lost and I totally get it. I am almost 4 years post injury.

That’s very observant of you to recognise what some relationships have as the pivot point. It’s a shame that many are reliant on what one person can gain from another.
Glad to hear you have formed new relationships with other survivors.

Wow, I am very moved by everyone’s comments, I don’t think people understand the enormity of a brain injury, although we have many issues we are working through, people presume a lot from outside appearance.
Yes I can shower, dress, put some makeup on, inside my head though, it’s fearful, mixed up and foggy. I am motivated to make my appearance ok because I can do that, but I still need someone to put an arm around me or listen to slurred words and just accept me, I am doing my best.
I feel your pain, it’s difficult to be vulnerable, to lose control of that competent old you and embrace this dysfunctional new you and on top of that you have the pain of loss of a loved one, or disappointment in a friend.
Some people haven’t got it in them to do this friendship anymore, that’s not about you and your changes, it says more about them, they haven’t got it in them to give it.
We are just going to have to learn and adapt to this adjusted you, after all we are different, we are brave, we’ve been through a massive situation.
Celebrate that instead, and find the people who will nourish you and not deplete you.
I am sure too that those who have lost a loved one, they would be proud of the effort you make to keep going, I am sure my dad who passed away, is saying ‘go on girl, you can do it!’

I’m sorry for your loss of your dad. But yes I’m sure he’s proud and rooting for you.

Our most primary relationship is with ourself, I think … and when that sense of self is radically changed via brain injury (thinking on Mary Kay’s thoughts), we’re starting from scratch. Who am I with others if I don’t know who I am with myself? — That’s my current experience, nearly four years post-injury. I’m not the person I was. Like Mary Kay, I was once very much “out there” with others, both in my work and in my personal life. I am still someone who revels in good company … and I am also plagued with panic at the thought of being anywhere other than in my small, safe space — I never know when I’ll be whacked with sensory overload and panic. There was a great deal of neocortical injury and my responses often devolve into reaction — lower brain functions at the fore; childlike and primitive emotional reactions are now predominant. Two of my closest friends disengaged from me a couple of years ago and the loss of those relations was devastating. I am much less trusting now — partly due to the injury itself, and also due to the losses of relation. There’s also a lot of shame with the injury — I can meet people 5-6 times and still not recall ever seeing them before, nor can I recall their faces or names. I struggle to follow and participate in conversation, where I used to be eloquent and fluid. It’s been said that one’s IQ can be reduced by a TBI … that’s been my experience. I feel like an idiot.

You write of your father, Michelle, and your experience with him … the witnessing of his functional losses; your grief at losing the person you knew. That is such a heartbreak. For any brain injury — whether it be a concussive blow or a disease process … I guess it’s a matter of degree, and a question of whether any function can be restored or whether it’s lost for good. In any case … grief. Grief and a need to adapt, to somehow differentiate what was from what now is. Somehow to align how we are with a radically changed person … without a map. It’s so easy to give up and to despair. Half the effort goes into just that!

There is a courage in tackling brain injury. Somehow, we must believe in our courage, even if we don’t have a clue as to who we are any more …

Some are selfish, some are busy with life and time gets away, some don’t know what to say, but none know how hard it is for you. A few and I mean very few will be there no matter what. I was a firefighter, had “brothers” that were sworn to be there in the tough times. Exactly 1 of those people is instrumental in my life, the rest never bothered to text me or call. I’m past that now as I have more important things to deal with like remembering to eat, shower, and sleep. I have become homeless after my wife left me and took our kids. These people are selfish and no other way about it. The minute I was unable to provide money, or work, or help people they all bailed. I am excited about my new life and I will choose my friends very wisely this time around.

Ryan I’m sorry you have been let down by the people in your life who you deeply valued. As a firefighter you know what it means to be selfless, but so should your former colleagues. I wish you all the best for the future, and I hope those you choose to put your faith in earn it and appreciate it.

God, Ryan, what a loss for you. I guess we all assume a certain bond among first responders and people in military service…and we assume lasting bonds with our families as well. I’m so sorry you have lost so many in your quest to regain yourself. May you find sturdy and devoted friends, and a safe haven to call home, from here on in. I agree with “a very few” — I can count my “very few” on one hand. Bless those who choose to stay by our sides…they are the rarest gems.

Ryan, I too am sorry to hear that you’ve been so let down. I think that says more about them and not you. Keep going, 1 good friend in difficultly, is far better than those who are only friends when all is good going.
I wish you the best in recovery.

Now my story is a little different to most. Because I too have a brain defect (Asperger’s) and understand too well how difficult it can be to maintain a healthy relationship. I’ve been with a beautiful woman since April, although I’ve know her longer and before her car accident! But she is a brain injury survivor. Now, she’s the one that binned me off only last week. It wasn’t the other way around. I told her over and over that she was so special to me and I loved her so very much. My heart would ache whenever I even thought of her. But she quickly turned against me and that was that, it was over. By quickly, I mean in the time it took me to close up the shop and get home, she turned! Here’s a brief on my prediction on what went wrong:

At first, everyone in her family loved me, and it felt great, especially with my Asperger’s. But a couple of months into our relationship, she started seeing me more often and staying around mine a couple of times a week. I then noticed her families behaviour change towards us. Her mum is classed as her carer. Things like her mum telling me I couldn’t take her anywhere far yet she let her friends take her out to places. And on our days together, her mum would randomly spring on her that she needed to be back by a certain time as she’s arranged a meal, without asking if she wanted to actually go! So I put this down to her mum fearing that she was slowly losing her to me (untrue as she just preferred to spend time with me as it was the only time she could be an adult again).

Slowly as time went on, she would randomly turn against me saying the most horrible things. I needed help as something wasn’t right, I have no one etc. I put this down to her being overwhelmed with things and getting upset and angry and taking it out on me. I let it slide because I knew her before the accident and this isn’t her at all.

Then a week ago is when it changed. Her family became threatening towards me and abusive. Telling me to leave her alone as I was upsetting her on a daily basis. But obviously I know it was her upsetting herself and her mother just happened to see she was texting me at the same time. I never said anything hurtful to her on purpose but on the basis that I struggle with communication, i sometimes came across a bit insensitive with things I’d say.

It all got turned against me with her sister threatening to ‘sort me out herself’ if the police didn’t. I’ve had to let her go. But I know I was good for her. Her family got in the way. They have been the devil in her right ear and no matter how hard I tried to redeem myself and say I’m not a bad person, I got made out to be one. She even told my mom things that obviously she’s never told hers.

I want her back so much it hurts.

I’d like to add it seems to me that her family have turned her against me. One minute she was saying she loved me and missed me and the pooch. 90 minutes later she was being so awful to me and told me goodbye. Then that’s when her family told me to forget about her and move on. This isn’t what she wanted but I’ve been made out to be a nasty person. She’s blocked me on everything but then I noticed a few days ago she’s unblocked me on twitter. I don’t know what this means.

Oh Tanya I feel your pain. I also had a situation with a close family member who never explained what I did wrong. And I can’t have any communication with her. Leaves you feeling powerless.

I feel for you. It’s a shame she didn’t tell you how she was feeling herself. But perhaps she was too overwhelmed because of her injury. I’m sorry you’re hurting.

I’m not sure if this is the appropriate spot to post or not. My relationships with my family have been really impacted. My family is no longer interested in how I’m doing, they all refuse to learn anything about TBI and overall have no idea what I go through every day. I was in an anoxic coma for almost 3 months. I had to learn how to walk, talk and cognitively function to some degree. Fortunately, I have a caregiver who comes 4 times a week for 5 hour each day. Without her around, I would be lost. I cannot find any info on this topic and if anyone can point me in the right direction?? I guess it’s really unusual to have a family who really doesn’t care.

Dawn I’m so sorry to hear that you feel your family are uninterested.
The only thing I can say as someone who helped her dad through Alzheimer’s, is sometimes it’s too painful to witness what the person you love is going through.
You have done amazingly well to come as far as you have. But perhaps still seeing your lasting effects might be too heartbreaking for them.
I don’t know, but it’s a thought.

I’m glad I came across this article as I’m probably in the denial stage of friendships changing after my brain injury. I’m shielding myself from more hurt by believing they’re just too busy to be around anymore. Thank you for your insightful words Michelle.

It’s a difficult process to go through. And they still might be busy, just allow yourself to adjust to your current situation.

I was 20 when I suffered my head injury, my friend’s & I were attending different colleges & beginning our life as young adults. I just celebrated my 25th anniversary of my accident over the summer.

I use to bring it up & share, but I’ve decided to celebrate the me that is WHAT YOU SEE IS WHAT YOU GET!! I’m NOT that sad, broken person anymore. It’s a sad story & I’ve worked hard to get to where I am.

I will say some people notice how well I’ve done for myself, but none of those friendships have resurfaced. Good luck everyone…IT’S THEIR LOSS! There is nothing wrong with us!❤️. Keep your head up & good luck finding your sunshine

Thanks for your positive words Sandra. It’s great to hear that it is possible to reconcile with your current situation and find new meaningful and deserving relationships.

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