confused Archives - Jumbledbrain

Guest post: Hope Clark on “My new normal” following her brain injury.

Michelle #jumbledbrain — Sat, 25 Jan 2020 15:09:44 +0000

Today I want to introduce you to Hope Clark. She is a talented writer, who has written about learning disabilities and has written a couple of articles for some local newspapers. Plus there are plenty of articles written about her. These articles can be found archived at the National Library in Ottawa.

Since her brain injury she wrote few pieces as part of her therapy. However, she has now decided to share them publicly and hopes (no pun intended) that they will help others.

“I am from SW Ontario, Canada. My past like is filled with Management positions, Event Planning, Fundraising and Marketing with a side of Communications. Writing for me is something I find very cathartic. I acquired my TBI in March of 2018 and have been trying to reinvent myself ever since. I am not sure what I am going to do when I grow up, but if I can help someone with my writing then I feel I have done my job.” – Hope Clark aka HM Lemon

This is an extract of one of her articles. You can read the full version of My new normal which she has published on Facebook here.

As the thick veil of trauma has slowly been dissolving over the past year, nine months, 5 days (you get the gist) my life has been interesting to say the least. I have been the most alone I have ever been even though, unlike before, I have a loving husband and two beautiful children. Don’t get me wrong, I have been treated with great empathy, compassion and caring.

My road to recovery has been met with other trauma victims, doctor’s, specialists, treatment providers: I am never alone, yet, I am the most alone I have ever been.

Living with a traumatic brain injury and trauma really does lend itself to the saying, ‘if you have never experienced it, you just won’t understand.’ You try to be like your old self, or your normal and no matter what happens…something you’ve never experienced before rears its ugly head. It is true what they say, ‘Don’t take things for granted because you never know what could happen”, is taken to the extreme!

I can’t drop my kids off at school because the commotion of the people, vehicles, movement, noise – it makes me so sick to the point my brain feels like it will explode. My ‘level of tolerance’ as the treatment providers call it is about 2 hours. When I meet a friend for a lunch, little do they know that I must sleep for 2 – 3 hours afterwards just to recover. This coming from a woman who would get up at 6 am to workout before getting the kids up at 7 am and then not stopping until around midnight. This schedule repeated day after day. Some other wonderful side effects of an MVA are, yet not limited to, screen time (computer and television) gives me headaches; my wonderfully intelligent brain now struggles with sentence structure, word recall and spelling and even executive functioning. My love of music has been put on mute and my awesome dance parties with the kids have been put on hold. I keep hearing the term, ‘new normal’ – and that is very difficult to wrap my head around. Living 44 years is a long time. You acquire certain traits, characteristics and now to be told that that isn’t you anymore is a struggle. At the same time, I am being told that I am extremely high functioning. What does that even mean!? Lol! Until recently I didn’t understand this until my OT said something of brilliance.

Living with a traumatic brain injury and trauma really does lend itself to the saying, ‘if you have never experienced it, you just won’t understand.’

You try to be like your old self, or your normal and no matter what happens...something you’ve never experienced before rears its ugly head.

It is true what they say, ‘Don’t take things for granted because you never know what could happen”, is taken to the extreme!

‘We can go our whole lives living a certain way and one little bonk to the brain and yep, you have to relearn your whole way of life and living.’ Crazy enough it made me feel a bit better. I understood what people were trying to tell me about my ‘New Normal.’

Living with a TBI, (traumatic brain injury) is your brain telling you that you just can’t!

What does that mean exactly? When my level of tolerance has been met my brain begins to feel like it’s on fire. You are most likely saying once again, what does that mean? Well, it’s like when you begin to get the flu and your head feels like you’re starting get a fever, that is what my head feels like – yet, without the flu. I begin to get foggy. My concentration levels start to fade. My ability to understand let alone comprehend what the person I am with is saying it to is slim to none and I am unable to make eye contact with whom I am with because my brain is too busy trying to keep up. Oh yes, comprehension has left the building everyone and thank gawd for spell check. This coming from the woman who has been published, interviewed for television, print and radio more times than I can count. On Mother’s Day 2019, I dropped to the floor in front of my family. Out cold I was, and an ambulance had to be called. I spent the day in the ER. Just before I was released the doctor came and tried to explain what was going on. We had a conversation and when she walked away, my mom said – honey, you did NOT understand a word she was saying. I was mortified. This isn’t the only time this has happened, and I was oddly humbled by the experience. The great news is that my memory is completely shot so the likelihood of me remembering these highly embarrassing moments are unlikely.

Memory: I did have one almost 2 years ago. I had a great memory and my jobs reflected by ability to hold large amounts of information. Now, I forget to turn off the stove or close the fridge. I lose my thought(s) in mid-sentence, knowing there was something there and at the same time not having a clue what I was saying, doing, or what the topic was. Grabbing and putting the wrong lid on something is day after day. I forget my children’s names. In my defence, it is mostly when I am upset of my tolerance levels have been met and asking them to go brush their teeth or get ready for bed. My daughter just looks at me as says, ‘Mom, why are you telling me to go to the kitchen!? Don’t you want me to go to the bathroom, cause we’re already in the kitchen?’ My response, ‘Om-goodness, you understood what I am trying to say so please just go,’ Lol.

Honestly, looking at your brain injury with a positive outlook is the only way to be. The truth is that you can not control the future, only your present. You have no idea when and if you will be 100% and that is okay. It is okay because you can begin to reinvent yourself and how many people really get the chance to do that? Every step forward is a victory. Each and every day you can manage the pain, headaches and nausea is a bonus! You just push forward with whatever you have left. Be thankful for every moment you get to spend with your children and jump for joy that they were not in the car with you. And, even though you miss experiences and moments with your children – you get to be there with them in the small moments: putting them to bed, helping them brush their teeth, making dinner because all moments and experiences are important. You cherish and laugh out loud when your 6-yr old tells you to piss off; and, when your 8-yr-old daughter wants to just sit and cuddle with you for hours. And, this is where I leave you 1 year, 9 months, 15 days,…for now.

Other articles you may like:

Does this sound familiar to you? What has it been like having to accept what is your new normal following a brain injury?

The post Guest post: Hope Clark on “My new normal” following her brain injury. appeared first on Jumbledbrain.

Guest blog: Vivian Schrock on, living with an undiscovered brain injury

Michelle #jumbledbrain — Fri, 04 May 2018 09:43:49 +0000

Today I want to introduce you to another blogger, Vivian Schrock. She writes on her blog God’s whispers of truth, how her faith has helped her to survive pain filled struggles. It has been especially important for her as her brain injury went undiscovered for many years. Finally, she began to understand what she had been going through. Only approximately 18 months ago, her husband convinced her to see a chiropractor. She had experienced numbness from the waist down for the second time within one year. That’s when the X-rays showed a head injury/compression.

I’m not sure which of my three car accidents gave me TBI. The first accident of 1991 was by far the worst. Two beautiful girls were killed that day, after our minivan went past the guard rail. It rolled down an embankment, loaded with us, six youths en route to summer camp. Our 17 year old driver spaced out at the wheel. I’m guessing that caused the most damage to my skull and dura matter, even though I walked away from that outwardly unscathed. The following two accidents gave me a pretty good whiplash. Both occurrences, I was rear ended by larger vehicles (a church van and a suburban) than I was driving at that time. I did end up in months of physical therapy after the final accident because of back problems which never shined a light on my skull compression.

I had years of migraines. I never knew why I was so nervous and jittery, and finally in more recent years, fatigue.

In August of 2016 this undiscovered head injury started having a domino effect on my thirty-something-mom-of-four body. My neck, spine, and sacrum began to fall to pieces resulting in going numb from the waist down. We went to a chiropractic specialist who first discovered I had a head injury. In order to halt the progression of my deterioration, they started doing cranial-sacral adjustments right away.

Nothing could have prepared me for the grueling months to follow.

Two months into the process, my adrenal glands went into failure from severe electrolyte imbalance. After finding a medical professional that knew how to help that issue, I began to push through adjustments with slow progress. And God is holding me….

Samuel Rutherford says, ‘Whenever I find myself in the cellar of affliction, I always look about for the wine.’

I’m learning so much as I research and try out new ideas for healing. My desire is to offer the hope of Jesus and raise awareness for others. If you are reading this blog, please feel free to share your story with me and know that you are not alone. I’m greatly honored to have you join me.

Other articles you may like:

Did your brain injury go undiscovered for a long time? What help did you get during your rehabilitation?

The post Guest blog: Vivian Schrock on, living with an undiscovered brain injury appeared first on Jumbledbrain.

My ability to spell, stolen by brain injury.

Michelle #jumbledbrain — Mon, 26 Mar 2018 14:52:04 +0000

When I was growing up my parents made sure that at every given opportunity I continued to learn. I mentioned before in Number problems after brain injury, how weekends included spelling and arithmetic tests. Part of me found it laborious, whilst the other part enjoyed the challenge. I couldn’t spell as well as I could do maths, but I was still pretty sharp compared to my peers.

My mother, the human dictionary.

Actually I was probably better than I realised, but I was using my mum as the benchmark. However, her grasp of the English language was astounding! She could give you the meaning of, and spell almost anything! It was a true talent as this was a lady who left school at 15. She needed to get a job to help support her mum and pay her own way. So she had no qualifications, but you were the fool if you thought that was anything to go by!

I credit her with my understanding of how English words are constructed. Yes my school teachers did their bit, but she had drilled it into me before they got a chance to have a go. So whilst I was never as accomplished as my mum, I still was one of the best spellers I knew. She’d given me confidence and the ability to break words down into their sections, so I could build words in the same way.

But my brain injury undid much of her hard work.

When my brain injury first happened, I couldn’t read or write. (Actually the last conversation I had with my mum before she died was about how I didn’t know what would become of me as I’d lost these essential skills.) But in time, I slowly improved, thank goodness.

My progress meant my confidence grew too. But that also gave rise to a false sense of security. For years I had been the person in the office you could randomly ask how to spell something and I could give you the answer, just like that. But I’m not that person anymore, although my confidence thinks I am.

Let me give you a really lame example that happened just the other day. My partner, James, and I were talking about the pronunciation of the word ‘full’. I over annunciate the U in it because it annoys me how often it is pronounced ‘fall’ or ‘fool’. James tried to point out that I can’t just base my assumption of how to say a word based on spelling. He pointed out ‘Gull’ makes quite a different sound, despite being only one letter different.

I immediately retorted that there was a reason for that….. “it’s only got one L.” I was absolutely certain of that ‘fact’ as I said it. But as the conversation went on, doubt started to creep in. And so it turns out I can’t even spell a 4 letter word.

My brain must be in denial.

If you have never been a confident speller, you’re unlikely to ever overestimate your ability to spell. You probably wouldn’t give yourself enough credit to begin with. Where as because I had previously been confident, and it was pretty much warranted, my brain is prepared to believe it is again. However, that just makes me look like even more of a fool.

I know that with continued practise I will improve my spelling. Just writing this blog is helping I’m sure. But I can’t tell you what I would give for my mum and her laborious spelling tests now.

Other articles you may like:

Has your ability to spell changed since your brain injury? Or is there another skill you desperately want back?

The post My ability to spell, stolen by brain injury. appeared first on Jumbledbrain.

Guest post: Mark Koning on brain injury, the long road.

Michelle #jumbledbrain — Wed, 21 Mar 2018 19:40:51 +0000

Today’s post is by a man who, like myself, as been on both sides of the brain injury coin. He was a young boy when he contracted a brain injury which undoubtedly changed the course of his life. And later he witnessed his mother go through the pain of a traumatic brain injury and began caring for her.

MARK’S PASSION TO LEND A HELPING HAND, OFFER ADVICE AND GIVE BACK, HAS DEVELOPED INTO A MORAL AND SOCIAL RESPONSIBILITY WITH THE GOAL OF SHARING, INSPIRING AND GROWING, FOR OTHERS AS WELL AS HIMSELF. HIS EXPERIENCE AS A SURVIVOR, CAREGIVER, MENTOR AND WRITER, HAS LED TO HIS CREDIBILITY AS AN ABI ADVOCATE AND AUTHOR OF HIS LIFE’S STORY, CHALLENGING BARRIERS & WALKING THE PATH. FOLLOW HIM ON TWITTER @MARK_KONING OR GO TO WWW.MARKKONING.COM

The Long Road.

It has been quite a journey for me over the course of my life, from memories of my folks taking me and my sister to Marine Land, African Lion Safari, trips to Florida, all of those school years, right up to where I am now. Quite a few of those memories from my younger years come from stories shared, photographs and a few home made movies. A lot of my earliest moments are stored, within something tangible, not exactly within my mind.

At the age of six a viral infection erased everything previous and left me in a two week coma with my parents clutching at their child’s hand. When I awoke I had to rebuild my speech, my understanding, my physical strength. Because of my young age I think my recovery sped along. I was home within months but remained sheltered from returning to school and much of the outside world.

Growing up with a brain injury.

Like with having to fight for an understanding with the doctors to admit me to the hospital (they saw no problems until seizures returned), my mom had to fight for me to return to school. I had missed an entire year because of this illness, the teachers could not understand, they questioned if I was ready.

Throughout my public and high school years, and even in college, I faced many challenges. I failed, I was made to repeat, I was occasionally ridiculed by others for not being able to keep up. “Stupid” was a word I was labelled with, “What’s wrong with you?” was a question I often faced.

It was a question I often asked myself.

I may have lowered my head, but always, even if pushing against an unseen abyss, I moved forward.

My long road, my journey, was missing something. Well, to be honest, a few things. But the one missing thing I refer to, is a diagnosis. I never heard anyone refer to me as a kid with a disability, let alone a brain injury.

It was my passion for writing that led me to self-discovery. Wanting to create a story based on my illness, a small part of one of my Creative Writing courses. I began with questions for my mom (my dad had passed away when I was thirteen) and other family members. Symptoms were what I used to look online and, together with my feelings, find a conclusion.

Events that shaped a career path.

But it was my mom’s fall and her own acquired brain injury in 2001 that brought about my search for an official diagnosis. A strange deja-vu overcame me when I paced the hospital floors. I concluded right then that my own thoughts were not enough. So tests given by a Psychometrist and a consultation with a Neuropsychologist concurred with what I had earlier discovered about myself. And even though it was kind of expected, it was still shattering news. Part of it was having a brain injury. Part of it was that I had struggled for so many years unknowing.

Currently I work full time in a non-profit organization where I feel like I am giving back a little with the services that it offers. While I find the work good and satisfying, I struggle with fatigue. I require the accommodation of working at my own pace, being able to take breaks and step away when my concentration level blurs. The most frustrating of it all, in both work as well as most other things in life, is that this disability, this brain injury, is invisible to the naked eye. It is even episodic in the fact that some days or moments are better than others.

But I’ve come to a place where I am comfortable with who I am. If others don’t understand my energy level and pace, the occasional frustration, the on-off again word finding difficulty… well, that’s too bad for them because I have a lot to offer.

Over twenty-five years between injury and diagnosis. Misunderstanding from family and friends. Explaining my injury (now that I understand myself) only to have people forget, roll their eyes or conclude what I really meant instead of what I actually said. There are times I get pissed off with these things. But I’ve realized, and try to remind myself, none of this is my fault or my downfall.

I am Mark, not the brain injury. But I do live with it, and I have accepted living with it. The survival, ups, downs, accomplishments and needs for improvement. They are all me. And even if sometimes still pushing against an unseen abyss, I move forward.

Other articles you may like:

How far down the long road of brain injury did you have to go before you started to accept your new life? Do you have any advice for others?

The post Guest post: Mark Koning on brain injury, the long road. appeared first on Jumbledbrain.

I am listening… just my brain injury keeps phasing out.

Michelle #jumbledbrain — Mon, 12 Mar 2018 15:56:39 +0000

I promise I do listen. But if you happen to leave the room for a moment and we are watching TV, don’t expect me to be able to fill you in on what you missed. The moment you ask me to explain, I will realise that I’m not sure because I’ve been phasing out so not taking it all in. Lots of people have this when they are distracted (mobile phones are a guilty party for this) but this happens so much more after my brain injury.

Please don’t be offended when I don’t follow what you just said.

Particularly if the conversation has become a little one way; eg you are recounting an event with intricate detail, I am going to struggle. Often we associate this with boredom and the subject isn’t interesting enough to stop our minds from wandering. But when you have a brain injury that isn’t the only reason for phasing out. I might just become aware of something, like “oh my double vision is slightly worse today,” or “wow, suddenly fatigue is coming back.” That can be the moment that you have just got to the crucial element but I’ve missed it. I don’t even particularly realise I’ve missed it until you ask me a question. Actually I often can’t even be sure why I phased out and couldn’t tell you what I had been thinking about.

But why does this happen?

I’m not a scientist or a doctor so forgive me if I over simplify this explanation, but here goes. Active listening is a skill which is assisted by cognitive control. Different areas of the brain work together during cognitive control. Problem solving for example is an adaptive temporal scale, where as concentration is a stable temporal scale. I spent quite a long time reading and rereading a study about this. It probably isn’t easy for the average person to read as it is, but for a brain injury survivor I can tell you it’s bloody hard!

But I managed to take this away from it:

The stable control system (concentration) is more dependant on the length of time you spend on a task. Therefore cognitive fatigue is more likely to be a problem for this system. So often brain injury survivors will try to compensate for this by using the adaptive control system (problem solving). This system is much more reliant on how much oxygen there is in the blood and is less affected by the amount of time the task takes.

So this means if you want a brain injury survivor to stop phasing out on you, don’t just talk at them. Help them engage other parts of their brain to spread the workload. Asking open questions is a way you can do this as they have to think about the answer, not just recall it. By this I mean you could ask their opinion throughout the conversation rather than at the end of your speech. Plus give them opportunities to ask questions as they come to mind as this is an example of their adaptive control system kicking in and offering support.

Not all survivors will have this problem, and those who do will have different levels of recovery within in. I have got a lot better, but I still can struggle at times. Like now I need a rest from trying to read and understand that study, so I’m off to put the kettle on.

Do you find yourself phasing out and struggling to concentrate? Have you got any methods to reduce the chances of your mind wandering off?

The post I am listening… just my brain injury keeps phasing out. appeared first on Jumbledbrain.

Guest post: Rob Dunn on family’s denial of brain injury

Michelle #jumbledbrain — Tue, 06 Mar 2018 12:26:40 +0000

This week’s guest post author, Rob Dunn, talks about the consequence of when families try not to acknowledge that a brain injury has changed their loved one. In his case this was taken as a caring response to a dreadful event. However denial might feel like a way to protect a survivor, but it’s not, as it doesn’t help improve their reality. As Saint Bernard of Clairvaux said, “The path to hell is paved with good intentions.”

ABOUT ROB DUNN: I HAD TBI IN 1988, AGED 10, BUT ONLY GOT CONFIRMATION OF PARTS OF BRAIN DAMAGED IN 2012. THAT’S 24 YEARS LATER. THAT IS A LONG TIME TO NOT KNOW WHY I SEEM TO BE FINDING PARTS OF LIFE SO HARD. AND TO ALWAYS BE TRYING MY BEST, WITHOUT THE EXTRA SUPPORT/HELP I NEED. 24 YEARS OF NOT REALLY UNDERSTANDING WHY I DIDN’T LIKE BEING IN LARGE GROUPS, WHY PEOPLE COULD DO THEIR WORK BETTER THAN ME. WERE THEY TRYING HARDER THAN ME? WHY WAS IT EASIER FOR THEM? TURNS OUT, I WAS/AM TRYING HARDER THAN THEM, BUT NEED REASONABLE ADJUSTMENTS, RESTS, BREAKS, EMAIL CONFIRMATIONS, TO MAKE MY WORKING LIFE EASIER.

March 1988 was a special time for me. My life changed. I was struck by a Jeep with bull bars. As I lost my memory, I don’t really know how it changed. I was only 10 years old, so I’m sure I would have changed anyway, but at least I’d have known how.

But going from being very clever, bursary level at private secondary school, to not knowing why writing pages had lines on them, was irritating for me and very difficult for me and my family. I still remember being asked if I knew what our house was when being driven back from hospital, and the unsettling, unknowing answer I had to give…no. I didn’t know. Don’t you understand, I’ve lost my memory. Denial.

I don’t remember much about being in hospital, or not knowing my parents, sister, family. But I think that’s mainly because of post traumatic amnesia!

Now this was 30 years ago, so I must have learnt how to live with brain injury by now. For first 25 years, I got no help in understanding the parts of my brain that were injured or how to make reasonable adjustments. No help. Why wasn’t I given any help? Denial. Why did I get the impression I had to be the same as I was before? Denial. I lost my memory, so had no idea what I was like before anyway!!

It makes me think how much I accomplished in first 25 years of injury, managing to hide my brain injury from everyone, employers, colleagues, me, and how much I’ve accomplished since, learning to use reasonable adjustments in my work and home life. My wife noticed how I needed extra help remembering things, and she suggested I get my brain looked at. Why didn’t my parents suggest this sooner? Denial. Some of you may have noticed this is the fourth time I’ve mentioned the word denial.

I vaguely remember discussing denial with one of the neuropsychologists I saw, 25 years after brain injury, a few months after a MRI scan. The neuropsychologist told me that families are often in denial, as it’s easier for them to cope with the situation, and they think it will make it easier for you, to treat you the same as you was before. I think it’s often easier for close relatives to pretend there’s nothing wrong, as it’s easier for them to deal with. In their eyes, that helps you be the person you were, you were meant to be. But a big, difficult part of brain injury is realising we are the people we are now, post injury. And we are still the people we are meant to be. Survivors; strong, determined people, who will learn to happily live with a brain injury.

Extra effort to concentrate is tiring, and some things are confusing if I lose my concentration… I’ve learnt/been told, that after I feel confused/loose concentration, I should rest for a few minutes. Thanks, occupational therapist!!

And there are benefits to having poor attention.

I can watch the same programme, over and over and over again. Or read the same book, over and over again. I can use my reasonable adjustments at work, without anyone knowing. Being discharged by occupational therapist felt amazing!! Being able to achieve things makes me feel special. Think of all the things you’ve achieved post injury. How special does that make you feel? Living with brain injury does get easier. Sometimes, it might even feel normal.

When I think of how tough, confusing, difficult our paths can be, I remind myself of how proud I am, that I am a survivor, and I can get through any difficulty thrown at me. We are all survivors, and we can get through any difficulty thrown at us. Even if friends, families try to help us, by denying we have hidden injuries and do need extra, reasonable help/adjustments. We are survivors.

Other articles you may like:

Are people around you in denial about your brain injury? What message do you have for families and friends to brain injury survivors?

The post Guest post: Rob Dunn on family’s denial of brain injury appeared first on Jumbledbrain.

A brain injury is enough of a challenge, so choose your battles wisely.

Michelle #jumbledbrain — Thu, 18 Jan 2018 18:53:57 +0000

Everybody has to decide what is important to them, and take actions to protect and nurture them. Equally, as we don’t have endless resources, we have to decide what things we are going to ignore as they don’t really matter. This process is fondly referred to as when you “choose your battles”. We all have different factors that something has to meet to qualify as important. But I have found that living with a brain injury makes my important list a very exclusive one.

How priorities change.

A brain injury can mean emotions can come and go suddenly, but be explosive whilst they visit. This causes great stress and anxiety, whilst soaking up lots of precious energy (which isn’t in abundant supply.) This can happen because emotions are closely linked to the fight or flight response. As Dr Erin Olivo explains here, this is your brain’s way of trying to keep you safe (particularly since if you have a brain injury you have already had a close shave.)

Over time, I have slowly been trying to reset my emotional responses, by being more mindful about each situations merits. I wrote previously in Complacent but not carefree after brain injury, how my priorities have changed, making some things no longer feature on my important list.

But just because I might decline certain battles, it doesn’t mean I don’t care.

There’s lots of things that are important to me. For example, if I could I would make it so that creatures don’t have to eat each other to survive. But I can’t, so whilst I care deeply about their survival, I have to let this issue go. It’s just too big (and impossible) for me to tackle, so that agenda is “GAME OVER”.

But things can be on the opposite end of the scale, too small to waste effort on. However, it’s these things that often get people riled up. This could be someone nicked your packing space. It has consequences as it causes you temporary inconvenience, and their lack of respect is offensive. But it’s not the end of the world. Nevertheless that doesn’t stop us getting upset about it, and calling that person every name under the sun.

How would you feel about this battle?

Regular readers might remember in Held back by weakness from brain injury, I talked about a new front door we had installed. Well, it has a small crack in the window which was there when it was delivered. Apparently they can’t just replace the glass, it has to be the whole door. So they reordered it, and after much chasing, they made the appointment to come and replace it. I was told to expect them on Friday morning, so I waited. They never showed up, and I called the area manager. He claimed he didn’t know what had happened, and asked for time to look into it. He never called me back, so before the close of play, I called him again. Apparently the door didn’t even come into stock until that afternoon. Quiet frankly, that’s pathetic.

So he promised me the installers would be with me by 9 am on Tuesday. Tuesday comes and at 8.45 am he is calling me, and I brightly answer the phone, “Good morning Keith!*” (*I have changed his name here.) He sheepishly started with, “Morning Miss Munt, don’t shout at me, but….” Ah, the dreaded but! Turns out the replacement door had been sent in with the same problem and they had only just noticed.

There’s lots of things I could have said to this. However I chose to laugh, and just accept it. The customer experience is dreadful, and at this stage I’m not sure if Keith is being honest with me, or just covering his arse. But it makes no difference. Getting upset about it wouldn’t change anything. Alright, I probably could demand some money back, but that wouldn’t solve it. All I want is a nice new fitted door without faults, like I asked for. Instead I opted to save my breath and energy, as my brain injury has more important battles to contend with. You might think that makes me a walkover. I think it makes me a survivor.

How do you choose your battles? Or does your brain injury keep picking unnecessary fights?

The post A brain injury is enough of a challenge, so choose your battles wisely. appeared first on Jumbledbrain.

Missing the obvious mistakes after brain injury

Michelle #jumbledbrain — Wed, 03 Jan 2018 17:53:00 +0000

Everyone makes mistakes, especially when they are tired or stressed. But when you are living with a brain injury those moments can become more common.

Take a recent friendly game of Monopoly I played with James and his parents. I have always liked Monopoly, but I don’t get uptight about winning or not. I’ve never got a strategy and just go with the flow. But I was actually doing fairly well during this particular game, without making too much of an effort. (Leicester Square was proving to be quite a cash cow for me.)

We had set up on the dinning table as it’s more comfortable than playing it on the floor. But it did mean that when your character piece was on the opposite side of the board it was a little difficult to reach. So we would help each other out and move one another pieces when the player couldn’t reach. Just as well that in Monopoly the pieces are distinctively different. Other board games often have the same shaped piece but in different colours. I think that is harder to remember which piece represents which player and leads to mistakes.

We each had specific reasons for which piece we chose:

James – The race car (He’s a man in his prime and his car is pretty important to him.)

James’ Dad – The iron ( He does like the top hat but this time he went for the iron as it’s easy to pick up.)

James’ Mum – The boot (It tickles her sense of humour to be “the old boot”.)

Me – The Dog (I’m animal crazy so it just had to be…. Plus it tickles my sense of humour to be “the b****”.)

All very clear. If I gave most people a test at the end of this article to test if they remembered who had which piece, the success rate would be pretty good.

Cue the brain injury induced mistakes….

To begin with everything was going fine. We were making our way around the board and buying the London streets we fell on. But my first mistakes came when I wasn’t able to concentrate enough to recognise when I should charge a fee for someone landing on my street. But everyone was very fair and honourable players, making sure they paid up anyway.

But before long it got worse than that. When I was trying to be helpful and move someone’s piece when it was tough for them to reach, I seemed to just move any piece. I never questioned why I was drawn to a particular piece and would just go for it. This even happened when I was trying to move my own. So many times I had to put them back where they started before the correct one could be move the required number of spaces.

My brain injury was probably making my brain conserve energy and work on autopilot. (Except my autopilot is very faulty.) Even when I knew I kept doing this and recognised I should tried to concentrate more, it was too late. There was no correcting the error happening due to my brain injury. So I had to stop moving any pieces and let others do it for me.

Why your brain can overlook obvious mistakes.

Naomi Karten wrote an interesting article called Miss Something Obvious? Your Brain Might Be Working. In it she explains how the brain uses it’s own short cuts at times. Sometimes this means we find the answer easily and reduce the amount of effort needed. But other times we miss things because we cut too many corners.

My Monopoly example luckily means no harm was done. And actually board games are great for training when you have a brain injury, as Alison explains in The Ultimate Guide to board games for brain training. But there could be other things I’m doing everyday without realising. The only reason that I knew what I’d done during that game was because everyone else witnessed it and was able to correct it. So I would advise that when you are undertaking important tasks and decisions, make sure you have someone you trust with you to help point out the obvious mistakes if they happen.

Following your brain injury do you miss obvious mistakes? What tips to you have to cope better?

The post Missing the obvious mistakes after brain injury appeared first on Jumbledbrain.

Can hidden memories after a brain injury be good?

Michelle #jumbledbrain — Wed, 20 Dec 2017 16:02:12 +0000

Post traumatic amnesia is common following a brain injury, with the short term and working memory being the most highly affected. So this can mean you can’t remember what you were talking about, constantly lose things, and jobs remain incomplete. But what can be harder to monitor is how many of your long term memories have been lost. I thought mine weren’t too bad, but you don’t know how much you don’t know.

Let me explain…..

As both my parents have passed away since my car accident, I don’t have someone to bounce off when talking about my childhood. You know, those conversations when someone says “Remember when….”, and the scenario you thought you’d forgotten comes flooding back. But as I don’t have huge gaps in the timeline of my long term memories, I assumed nothing much was missing.

Recently I visited my Dads first wife. They had remained best friends even through their divorce, and were very close right up to the end. So she has always been a big part of my life and she is very important to me.

I drove to her house, which hasn’t changed very much in the 30 odd years she has lived there. Although I have seen her regularly in recent years, I haven’t been to her house for about a year. It still had that familiar homely feel I remember it always had. In fact she told me the first time I visited that house after she moved there, I confidently announced “I like this house, it’s a proper home.” So I think that was my 5 year old brain trying to describe the homely feeling I got from being there.

As we chatted, I gazed at her well maintained little back garden. I recognised that a hedge was missing, so you could now see the fence at the end, and a new stone bird table sat proudly the the middle of the lawn. To the left sat a shed. Clearly it wasn’t brand new, but was still in good order. So I asked her when she had got the shed. “It’s been there around 30 years, as I got it soon after I moved in.”

Will I ever know how much has gone?

I didn’t want to dwell on it, after all, it’s just a shed. The conversation moved on and we had a lovely time. But I still found my gaze was drawn to the shed, as I tried to have that “penny drops” moment. No matter what angle I looked at it from, I couldn’t reconcile that shed. I had no memories of it at all.

That got me thinking about my parents. How many treasured memories of them was my brain injury hiding? As after your loved ones are gone, memories are all we have to keep them close. I do have lots of memories of them, and photos too so it’s not that I’m drawing a blank. But I hate to think how many gems I’ve lost.

But working hard to recall memories can mean something good is happening!

Did you know that in order to learn we have to forget?! (I know, it sounds so ridiculous that you couldn’t make it up.)

Our memory works by having to reconstruct the event – the people, the environment, sounds, smells etc. I doesn’t just record it like when you play back a home video. Have you ever noticed that sometimes you will remember parts of an event which another person has forgotten, but they can recall something else?That’s because each time you recall that memory, you alter it slightly. (Stay with me on this, it will make sense….. I think.)

Every time you recall a particular element of a memory you make it stronger. You have told your brain to prioritise that one over others that you haven’t requested for ages. Think about the shed I couldn’t remember. As it was to the left edge of the garden, there are many more angles that you can’t see it from. In fact as a child I used to always sit in a particular position where you wouldn’t see it until you stood up. So although I must have always known it was there, it didn’t rank highly when I was recalling memories. As you reconstruct memories in their parts, the parts that that you recall more often rank higher and come back quicker. So because the shed didn’t feature in the scenes I was reconstructing, it’s very existence became of little importance to my brain. But someone who was sat in a position where the shed was always visible probably would remember it being there.

This prioritisation of the elements of memory happens so you can learn. We need to discard less important things to be able to focus and learn the important things. For example, on average we see 5,000 logos a day, but I bet you couldn’t list that many right now. You would be able to tell me the ones that are important to you – like your mobile phone manufacturer and network, car insurance company, bank etc. But you might struggle to think of the logo of a glow stick maker (unless you are a crazy raver, in which case, RESPECT!) But any element that you have to work hard to recall, and eventually succeed, is how we learn!

And the most interesting part is those lost memories aren’t necessarily gone. It could that they aren’t ranking well and our brain thinks they are irrelevant. So perhaps it is possible to still retrieve them. Don’t believe me? You can read about how some research suggests that even in many cases of brain injury it’s recall which is at fault, not memory itself here. Therefore it might be possible in the future artificially reignite these memories.

So I can say with certainty, Mum, Dad, I will never forget you. I just might not recall…….

Do you struggle with long term memories following your brain injury? Have you found anything such as hypnosis, which helped?

The post Can hidden memories after a brain injury be good? appeared first on Jumbledbrain.

A brain injury isn’t a part-time ailment! I’m injured!

Michelle #jumbledbrain — Thu, 23 Nov 2017 09:52:24 +0000

A regular reader of this blog asked me to raise this issue. As I do believe many of us face this I was happy to do so. It probably comes from people mistaking our good and bad days for a part-time issue. But unfortunately a brain injury goes much deeper than that.

As with many chronic conditions you can learn how to avoid exacerbating the symptoms of your brain injury. But sometimes in different situations you have to stretch yourself despite this. Then the aftermath can be at its most punishing. That is the only thing living with a brain injury has in common with a headache.

Where as a headache can dissolve and allow the person to get on with life, a brain injury doesn’t. It doesn’t take a day off like a part-time ailment, it’s always there. We might have a good day after managing our symptoms well, but that good day still might not be what our potential was before.

What people don’t always realise, is that when we are having a good day we are working our brain very hard. It’s like asking a sprinter to do a marathon. They might be able to do it, but it would leave them in a bad condition for an extended period afterwards. Possibly even ruin their career. So if anyone thinks it would be reasonable be ask Usain Bolt to run a marathon, please go ahead. (He’s 6ft 5in and basically a mass of muscle, so good luck with that.) In fact, he has never even run a mile. The Washington post does a pretty good job of explaining why.

Whilst for the time we are in your presence we “appear” to be doing well, that is just a snapshot in time. You don’t know how we struggled to get out of bed, and changed what we were going to say because we couldn’t remember the words we wanted to use. Whilst it might look like our brain injury is something we deal with only sometimes, it’s not.

This is demonstrated well by the “Spoon theory”. Christine Miserandino devised it whilst trying to explain to her friend what living with Lupus is like. Her explanation can be related to any chronic illness. She used spoons to represent energy reserves for that day. Her friend was surprised when Christine took spoons away for daily activities which she usually took for granted. Thus it demonstrated how Christine had to always plan her day to try to conserve her spoons. Otherwise she would run out of energy too quickly and her symptoms would become unbearable.

I hope this has helped to demonstrate to those who didn’t fully understand, the struggles of living with a brain injury. You might wonder what the survivor is always complaining about, when they seem OK to you. Or perhaps they don’t complain and you don’t ever get to hear what it’s like for them. So next time they say they can’t do something that day, or decline to attend an event, please remember their spoons. They might really want to join you, but the consequences might be too severe.

Other articles you may like:

Does someone you know think brain injury behaves like a part-time ailment? Have you got another way of explaining the "Spoon theory"?

The post A brain injury isn’t a part-time ailment! I’m injured! appeared first on Jumbledbrain.