assumptions Archives - Jumbledbrain

Terms that might accidently offend those with a brain injury

Michelle #jumbledbrain — Mon, 11 Jul 2022 10:47:03 +0000

Living in the 21st century means we are all slowly becoming more aware of we are all different and that should be celebrated. Along with that, we are more regularly being reminded not to just assume things about others and to be aware that we can accidently offend people if we do. For example, I live with my partner. That term says nothing about the gender of the person I share a home with, therefore if that was the only information you had you wouldn’t be able to tell what my sexuality is. Many of you who have been reading my blogs for a while will know that his name is James and so with that you can deduce that I’m heterosexual, which I am, or you could still think I could be bisexual.

But there are things that we use to describe our experience of brain injury and other chronic illnesses which resonate with us, but they might not have such a positive effect on the next person. I’m not suggesting we start tip toeing around each other and create a atmosphere where everyone becomes scared to say anything for fear of upsetting someone else. Rather I want to help us recognise that there may be times when one of these terms, expressed with good intensions, might get a response that was different than hoped for. If we understand why someone’s feelings are contrary to our own we can still display our compassion by going back and offering and alternative to acknowledge their feelings.

After meeting some people who said a few terms made them uncomfortable that I personally had never realised before could problematic, I asked the brain injury and chronic illness community to fill me in on others that can feel jarring to them. In addition, I asked for alternative words that we can use too.

Terms which can be annoying and other options you can use.

SURVIVOR – Those of us who have lived through an event which was life threatening may choose to refer to ourselves as a survivor (I certainly do.) However, dealing with the struggles of a brain injury do not stop there. Adjusting to how that has changed their life and left them with continuing challenges can be totally overwhelming. A person can feel like that are drowning and barely surviving. Therefore to call them a survivor can feel like their current struggles are being just brushed under the carpet.

Alternative – “[enter persons name] lives with a brain injury.” This phrase doesn’t add any positive assumptions to it and is more “matter of fact”. It allows space for the person to decide if they want express any emotions abut their personal circumstance.

SPECIAL NEEDS – Whilst this is a term that is in most places considered politically correct, it can feel awkward for some. Often the word “special” comes with assumptions such as VIP which in this circumstance it doesn’t mean. For some people it can feel like that are saying they want to be treated like they are a celebrity or something, when in fact they want to be treated like everyone else just with certain alterations which help them which their challenges.

Alternative – Requires high support or medically challenged. This makes it clear that it is highlighting it’s a medical issue to be aware of, rather than someone who wants to be treated like a Princess.

DISABLED – The mere fact that the prefix “dis” is used to mean opposite of, not, remove or reverse can immediately feel negative. It can leave people feeling like they are less than an able-bodied person. There is still stigma attached to it which society is only just started the try to remove. I have said before how I personally struggle with identifying as disabled, although I am starting to embrace it a little more now.

Alternative – Differently abled or challenged. These terms tend to promote more open mindedness about that can be rather than immediately just conjuring up images for a person in a wheelchair. Plus it acknowledges that the person CAN still do the task, just that they might do it in a different way than the next person.

SUPERHERO/HERO – These labels are offered with affection, but some people don’t connect with them. They can feel cartoonish in some cases, making us think of characters who have superhuman powers and strength. that can leave a sense that the ongoing struggles of the person is being diminished.

Alternative – “[enter persons] lives with a brain injury. You can go on to compliment them for how hard they have worked at their recovery if you want, but still leave space to recognise their struggles are not over and sometimes they don’t feel strong.

PATIENT – This term is only correct when the person is a client of a medical practise. Some people are fine using it outside of this setting, but for others in can be too clinical and dehumanizing.

Alternative – By phrasing it with the persons name first; “[enter name] lives with a brain injury, you are giving them their identity as a person first.

STROKE OR BRAIN INJURY VICTIM – Unfortunately, particularly for those who have had a stroke, this phrase has historically been used quite a lot. People don’t want to be victimised so this term can be offensive.

Alternative – “[enter persons name] had a stroke.

THRIVER – Another term which is supposed to compliment the person for how they appear to be coping well with their condition. But it’s another one that can overlook the strain that the person is going through.

Alternative – “[enter persons name] lives with a brain injury.” I know I’m repeating the same thing over again, but it’s important not to assume anything about what day-to-day life feels like for a person.

SUFFERER – This immediately sounds negative and implies that the person wants your sympathy. Empathy is good, but we don’t need sympathy. The latter passes judgement and only offers understanding from your perspective. It makes it sound like you’re suggesting the persons position is awful.

Alternative – “[enter name] lives with a brain injury… I think you’re getting the idea now.

NEW NORMAL – Many use this to describe their status that they have had to adjust to. However, not everyone likes it because of the word “normal”. It implies that everything is fine and things will be going smoothly from now on.

Alternative – Day-to-day status means what a person might experience on a regular basis but it doesn’t say anything about how usual or unusual this might be.

DISORDER – Whilst this word is used in medical terms such as PTSD, it can make the person feels like they have done something wrong. One person described it to me as; “Disorder for me implies that I’m doing things deliberately out of the norm. I am just doing things the best that I can given my condition and learned reactions from similar situations.”

Alternative – To reduce the sense that the the person is wilfully misbehaving, as the word “disorder” does, the word “response” comes across as less emotionally charged and purely factual.

RESILIENT – This word is used to reflect the fact that the person has to put in extra effort each day to be able to put up with the challenges their condition presents them. But it’s not a battle they want to be in, and what is their alternative? Therefore not everyone wants this characterisation because they really don’t feel like they are doing much more that surviving.

Alternative – Recognise that facing their challenges isn’t a choice for them and accept that they are just doing what they have to do to get by.

BRAVE – In the blog post, I’m not strong or brave, I didn’t choose this brain injury , I outlined why I don’t like being called brave. Again this word can make it sound like there is a choice when you are living with a brain injury. To be brave often means choosing to tackle something that the next person would be afraid to. However, we are just playing the hand we were dealt.

Alternative – Just empathise by letting them explain what their experience is like, if they want to.

WHEELCHAIR BOUND – This is an ableist term which implies the person should be pitied. As one person put it to me, “this wheelchair is what gives me my freedom”, which is a totally different perspective.

Alternative – Wheelchair user.

JOURNEY – Many of us, myself included, have used this word when referring to our lives since our brain injury in our pursuit of recovery. But for those who have a degenerative or terminal condition it can be distressing as it suggesting you are aiming for a destination, and for them that can only be death.

Alternative – It can be more sensitive to refer to it as navigating their condition.

“BUT LOOK HOW FAR YOU HAVE COME” – Whilst this is uttered as a pat on the back it can make the person feel like they should be “content” with their current position. This can sound like you are saying they shouldn’t complain and just be thankful of the progress they have made.

Alternative – It fine to highlight the persons progress, but talk to them about how they feel about it and what they see as coming next for them. They might feel that they can expect things to continue to improve with the right support, or they might not. Don’t assume anything.

I hope this helps us better understand each others points of view. Again I want to be clear that people don’t need to be so concerned that they dodge talking to someone who has and brain injury to avoid saying the wrong thing. If they notice something didn’t land right with them just ask them why and hopefully these alternatives will help you say the same thing in a way that feels more appropriate to them.

Other articles you may like:

Are there are terms that you would prefer people didn't use around you and others with a brain injury?

The post Terms that might accidently offend those with a brain injury appeared first on Jumbledbrain.

Living uninhibited thanks to brain injury, my realisation

Michelle #jumbledbrain — Tue, 02 Jun 2020 16:05:02 +0000

When we moved into this house many years ago, I wanted it to be sophisticated and stylish, so we used pops of colour rather than allowing our use of colour to be garish. And it hasn’t changed much, mostly because redecorating can be too difficult with a curious cat about the place. We worry about opening the windows upstairs because he always looks like he’s so over excited that he’ll accidently throw himself out and go “splat” on the patio below, so filling the place with wet walls and paint fumes isn’t something we would do lightly. But instead I have recently given the garden shed a makeover. I didn’t even discuss with James what I was going to do to it. I told him the colours I was using, but seeing as he says he can’t envisage things, I did’t wait for his approval.

Feeling that my choice was right

I don’t know why, but I was confident in my choice, and whilst I knew it was unusual, I thought it was inspired. Sheds are often boring, and the inside of ours is definitely that. But I decided that as I see the outside of the shed everyday from my living room sofa, I wanted to make it more fun. Long story short, it’s got so many stars on it, it looks like the world smallest night club!

This isn’t going to be to everyone’s taste, and I admit it’s over the top even for me. However, it got me thinking about how it really didn’t matter if other people liked it or not (apart from James seeing as he lives here too.)

Years of worrying if others opinions would change based on my taste.

As a teenager I remember being so confused about how everyone could give each other a hard time about something simple like what music bands they liked. I worried about being the butt of the abuse so much, I rarely named any that I actually liked. It was the 90’s so brit pop was ruled by Oasis and Blur, and somehow a cultural developed that you had to be in either one camp or the other. Personally I liked both but was slightly more drawn to Oasis, and so if asked that’s the camp I was in. That meant if a Blur track came on I couldn’t be caught tapping to the beat or humming along otherwise I’d be caught out as migrating to the other side.

This made me feel like a fraud and that I should have definite ideas on what was my taste. But in honesty I didn’t follow music just because a particular band or artist had created it, it was just if that individual track resonated with me. Between this, and worrying about being caught out for liking the wrong stuff I rarely bought CD’s. (Yes kids this was before we could just download a track. We either bought a “single” for what felt like a lot for what you got, or you went the whole hog and bought the album.)

How I’ve become uninhibited thanks to brain injury.

One day someone close to me commented on that fact that I love to wear clothes with fun prints on them: like flamingos or pineapples. They said how I’m actually quite childish. Initially I took offense to this. It sounded like that where calling me immature and putting my down. But later I realised that actually what they meant was that I was fun and uninhibited like a child. Whereas before my brain injury I was a woman in her 30’s who had confidence and knew her own mind, I was still concerned with image. I needed to come across as professional, and I didn’t think flamingos necessarily fit the bill (no pun intended.)

As I’ve slowly regained some confidence following my brain injury, I’ve come to realise that I don’t have to worry if others don’t agree with my taste. Yes I might be a bit eccentric, but so was Einstein. Thinking back to when I was a teenager I desperately wanted to be one of those rare few who didn’t care what people said about their choices. Being different and just comfortable with who they were was actually much more attractive than the rest of us sheep who where just followers. Perhaps that’s what a life changing event does to people. Silly things like worrying if another person would like my crazy shed becomes trivial when you’ve gone through so much. I have touched on this a little before in Complacent but not carefree after brain injury which I wrote around 3 years ago. Then I was generally struggling more than I am now, so I put my almost slap-dash attitude down to necessity because I needed to pace myself better. However I now see that it’s do to with my perspective on life and finding enjoyment where you can too.

The teenage me would be proud of me.

Finally I have become the person the teenage me really admired and wanted to be. No, I’m still not sporty, have the figure of a super model or am running an amazing business empire. But I am finally being open about who I truly am, and not wasting energy trying to react to things in a particular way so the cool crowd will approve of me. Thanks brain injury, who knows if I could have done it without you.

Other articles you may like:

Are you uninhibited after your brain injury, and do you want to be?

The post Living uninhibited thanks to brain injury, my realisation appeared first on Jumbledbrain.

Traumatic Brain Injury: understanding the trauma by Dr Rob Tennant

Michelle #jumbledbrain — Mon, 16 Mar 2020 17:53:47 +0000

Dr Tennant was not alone in the car when he sustained his traumatic brain injury. His injuries were not as obvious as those of his father’s and that impacted the triage process that night and followed through his long recovery. It is not uncommon in situations where more than one family member is injured for the person with the least immediate symptoms to be underserved by medical practitioners and family. He believes that such abandonment results from the confusion to the family structure caused by multiple members experiencing such serious trauma simultaneously. Once the perceptions of the hierarchy of the trauma have been codified within the family, it can reduce the treatment outcomes for the victims with the least perceived injuries.

Everyone experiences a TBI differently. Everyone has their own story to tell. I hope this essay provides insight into some of the challenges that can occur after a head injury.

As a freshman in my second semester in college, I had adapted to the challenges of campus life and was really learning to enjoy the freedom of making my own decisions. My major was computer science and my love for mathematics was fed through the required coursework. My brother was about to join the Air Force, so he came to stay a weekend before he was going to go off to basic training.

We had a great time hanging out and doing crazy things to build memories before life got serious. The following Thursday, my dad and brother came to pick me up for the weekend, so I could see him off the next day.

When I got back from my evening class at 9:30, we talked with some of my floor mates about what had happened the prior weekend. My dad was a great kidder and everyone loved to be around him.

After we packed up my laundry, after all I was going home, we set off for home. It was a cold rainy St. Patrick’s day. I don’t remember all of the details, but I do remember that the trip seemed much longer than usual. After about twenty minutes on the road, the accident that would change my family’s life happened.

I remember seeing the bright lights of the truck, as it approached my side window. At least I think I remember it. My memories from the rest of the night are less sequential. I’ve talked to many people that have sustained traumatic brain injuries in auto accidents, and it is common/typical for memories to be foggy or non existent. Somehow I made it out of the car, and so did my brother.

I don’t exactly know where my brother was, but I know that he rolled out of the car after the large truck T-boned our little station wagon. My next memory is of a kind angelic woman comforting me, while my dad was trapped inside of the vehicle. At one point someone’s yelled that he wasn’t breathing. Fortunately, that wasn’t true, or they brought him back. I don’t really know which. I have no idea how I got to the hospital, but I can say that it seemed like I was sitting on the curb in the cold drizzling night for what seemed to be an eternity. I heard someone shrieking in terror, pain, and agony. It seemed incessant and unlike anything I’d ever heard before. Eventually, I realized that terror emanated from me.

I don’t remember it stopping, and I don’t remember how they got my dad out of the car, but I know it involved the jaws of life. Like I said earlier, I don’t know how we got to the hospital, I just know that my Dad’s surgeries took all night. We both had sustained serious brain injuries. My dad was in the hospital for a long time. I had not yet been diagnosed with my TBI. Monday, I went back to school to finish the semester. I had separated my shoulder and was treated on an outpatient basis for the physical bodily injuries I had sustained.

My dad was in a coma for forty days. I was at school with an undiagnosed head injury. While my dad lie comatose back home, I persevered back at school. It was a horrible experience. I was always afraid I would get a phone call telling me my father was gone. Also, I had uncontrollable head pain and was tired all the time. School was now nearly impossible, and I felt alone. My family was back home visiting dad all day everyday, and I was struggling at college. I completed the semester and passed a class or two. It was a dreadful semester. I would have many more like it through my undergraduate program.

I ended up changing majors from computer science to fine art, my other passion. But it still hurt to not be able to do the math. About the time that spring semester ended and I went home for the summer, my dad came out of the coma. The hospital told us he was no longer in a coma. It was nothing like in the movies. The only way I knew he was out of the coma was because they told us so.

My dad took years to recover, and I’m not even sure what that means. He is no longer the same person he was before that fateful night, and his life has had no shortage of challenges to overcome since the accident. It took three years for my TBI to be diagnosed. After having a tonic-clonic seizure on a boat, testing and evaluations were done and my diagnosis was affirmed. Because of my father’s injuries, mine were always viewed as less severe by my family. However, the seizures, chronic head pain, depression, and other residual impairments all are part of my trauma.

My dad is now eighty and I have persevered through my bachelor of fine arts, three master’s degrees, and a PhD in accounting. The TBI is part of me, but it isn’t me. After many years, my father and I have learned to cope with the trauma, but it will always be a part of you.

Other articles you may like:

Have people tried to compare the trauma of your TBI to theirs and made it feel like a race to the bottom? How can we make sure people don't get overlooked?

The post Traumatic Brain Injury: understanding the trauma by Dr Rob Tennant appeared first on Jumbledbrain.

Living with a brain injury in an ableist society

Michelle #jumbledbrain — Thu, 20 Feb 2020 18:32:39 +0000

I don’t like trending buzzwords much as they always leave a sour taste in my mouth where it feels like people are just being quick to jump on the latest bandwagon. That’s why I’ve been reluctant to bring up the subject of how much of the modern world is still behaving as an ableist society…. that is until now. Yes I’ve spoken before in Living with invisible disability, brain injury about how having an invisible disability can mean both able bodied and disabled people can misjudge you, but the other day I witnessed something that proved to me how far some people still have to come in their understanding of those for are not like them.

Trigger warning: This level of ignorance I’m about to describe is likely to upset some.

I’m very active on Twitter and often tweet about brain injury and many other forms of chronic illness (if you don’t already you can follow me via @michelle_munt.) The other day I retweeted an announcement of the company that a guest blog for that the latest blog post by another of their guest bloggers was now available to read. The blogger, Lauren has a spinal injury and so we blog about different things but as CFG Law is a law firm for personal injury they are keen to highlight how the disabled community can cope with their injuries. The tweet said: “Laurens latest blog with @CfgLaw is now available and Laurens experience of care at home… #sci #careathome #cfglaw”.

Laurens spinal injury came from being hit by a van 11 years ago as she crossed the road at the wrong time. She was distracted and unfortunately stepped out and the driver couldn’t stop in time. The accident left her completely paralysed, but since 2016 she has set up and runs the charity Road Safety Talks Charity to raise awareness and better educate others. I haven’t had the opportunity to meet Lauren myself, but she sounds pretty awesome to me! I can’t begin to imagine the amount of work it takes to set up a charity. She also is a motivational speaker, so I take my hat off to her.

One particular response to this made me see the ableist society at its worst.

Now the tweet has been taken down so I can’t quote it, but one lady put “Rest in peace whether he recovered or not.” WTF? I did ask her what she meant by “rest in peace”, pointing out that Lauren is a female blogger, ie alive and SHE has a brain which she is putting to good use, but I never got a response.

Clearly this person didn’t read the article so didn’t understand Laurens situation, and this person isn’t one of my followers so I don’t know what her situation is either. But what shocked me about this was that she seemed to be implying that Lauren might as well be dead because of her disability. I had understood that some people may well think like this, particularly if they haven’t ever met someone who is doing so well in life despite their disability, but I never thought anyone would dare share this ignorant view so publicly. I mean it’s Twitter! Hello, now we all know how stupid you are!

This got me thinking about examples of ableism I’ve experienced that I might have overlooked.

Again on Twitter (sorry Twitter I mostly have a very positive experience of you and find the community very supportive so I don’t mean to make you look bad) a “well meaning” health coach responded to a tweet about my brain fog. I did mention I have a brain injury (because I do mention it constantly) but she still told me that if I changed my diet and lifestyle I could solve my problems, including brain fog. Symptoms like this, she told me, are just a reflection of the imbalance that I had created within my body.

Now don’t get me wrong, I do realise a healthy diet and active lifestyle can help, I’ve even advocated for this myself. But I have a brain injury, I have to fight against the imbalance in me every day! The structure of my brain is difference and so are the chemicals in it. This also gave me hypothyroidism and so my hormone levels are not where they need to be. But there isn’t a formula which I can follow everyday to correct these issues. Everyday is different, some days I’m doing well, and others I’m not. Living with a brain injury isn’t as simple as doing exercise and eating the right foods to remove symptoms such as brain fog.

As I didn’t have the energy for an argument, and because I knew she meant it in the nicest possible way, I just let it go. But actually I was hurt at the suggestion that my symptoms were my fault. You could say that as I was “complaining” about my brain fog she was trying to offer a solution, but as a fellow coach and blogger I don’t accept this. I’m a blogger who uses her experiences to offer a voice for other brain injury survivors and raise awareness, I’m not actually asking for a solution. Of course I am grateful of any new information others can offer, but simply blaming me for my struggles is not helpful. What’s more, it’s not even like we discussed my lifestyle for her to be able to identify what I might be doing wrong, it was just “obvious” to her that I MUST be doing it wrong to be experiencing these symptoms.

And then there was the guy who said “what, so people actually read your blog about brain injury?”

Ugh, honestly it was only because this guys behaviour made me think that he might either been damaged or was on the autistic spectrum that I didn’t roll my eyes at him. Yes, people read it. Just because you’re not interested, assume it’s boring, has no value or whatever, doesn’t mean that’s how the whole world feels. The idea that writing about how my life has changed due to my brain injury must have struck him as self centred. Why would anyone want to hear me droning on about it? The funniest part about this conversation was I’d hired him to clean my drive at the time. Yep, his idea of building rapport with his clients was to belittle them! You won’t be surprised when I tell you I never hired him again.

I’m sorry to say that there are people out there whose ideas of the world are very much stuck in the ableist society. Do I lose sleep over it? No. There will always be things that as individuals we can do better and ways in which we can expand our understanding of others. Just like I’m sure I understand very little about the tribes who live in the Amazon and are untouched by the modern world, there will always be some people who don’t understand the disabled community. I do believe that overall things are improving and we have to accept it’s a work in progress…. for now.

Other articles you may like:

Have you experienced the ableist society? What can we do to improve attitudes?

The post Living with a brain injury in an ableist society appeared first on Jumbledbrain.

Brain injury survivor explains why your career isn’t your self-worth

Michelle #jumbledbrain — Tue, 29 Oct 2019 16:50:00 +0000

We are used to judging people by their profession: The customer service assistant, the doctor, the plumber, the football player, the chambermaid, the factory worker. And I’m willing to bet a significant number of people who just read those job titles felt less positively about the last 2 I mentioned because they aren’t as “successful” or “educated”. Or at least that’s what most of us think societies opinion is. So when we don’t have a current career because we have suffered a brain injury, we think others will be judging us because we aren’t good enough at something to be able to earn a salary.

When I had to give up my career I was asking the question “What is the point of me now? How do I add any value to anything?” Suddenly I was feeling a lack of self-worth worth after a brain injury. Hands up who else felt like this!

We like measurable actions, so being able to say your salary is X, indicates your value to society, right?

Wrong. But it’s pretty common to think that way. Doctors earn more because they have to have high intelligence to be able to learn and practice medicine, which the major of the population would not be able to do. The factor worker doesn’t need the same level of education and therefore a lot of people would find that they could perform this job. It’s a simple case of supply and demand, the more people who can perform a job, the less employers need to pay them because there’s more competition.

A job title does not say anything about if someone is a good person, and if their impact on their community is a good one.

It’s easy to assume that a doctor is someone who is having a positive impact. But that’s all it is, as assumption. Take Dr Harold Shipman who in 2000 was convicted here in England of the murder of 15 patients, but it’s believed around 250 people could have been victims of his over the span of his career.

Then there’s Didar Hossain who worked in a factory opposite the Rana Plaza building, Bangladesh, when it collapsed in 2013. He forced his way in to help people even though the authorities were trying to stop people for their own safety. He helped many people buried in the rubble, but he found a girl that they couldn’t release without amptating her hand. Didar alerted a doctor who replied “I can’t go in there, I’m frightened. You do it.” and handed him a knife and some anaesthetic to numb the area. Once he had cut the girls hand off and begun to lift her, another man begged him to cut his leg off so he too could be freed. Realising that he would die if he left him, he did as he’d asked. With both amputees tied to his body he slowly dragged them both out.

Now clearly these are extreme cases, but I think they demonstrate my point pretty well. You’re self-worth does not need to be tied to your career. We have the ability to make a difference whether we work or not. And that doesn’t have to be something as dramatic as what Didar did. It could just be listening to someone when they needed you, or making a child smile.

Thinking a career indicates your value to society is just a self limiting belief.

Now I’m sure most of us had families, teachers and mentors who encouraged us to realise our potential in life. But the reason they did this was so we could have good careers, LEADING TO a comfortable lifestyle. That means they were doing it to help you have a happy future. But because we are used to hearing about how “successful” others are, we end up confusing that with what society thinks of us.

If I did a pole asking you who would you rather invite to dinner and meet your family, Dr Harold Shipman or factory worker, Didar Hossain, I am certain Didar would win. (Alright, I know some of us would like to grill Shipman about “Who do you think you are?!” but you can’t because the coward killed himself shortly after his conviction.) Didar probably earns a modest wage and lives hand to mouth. His education is likely to be limited and it probably doesn’t take long to list his qualifications. But you’d rather have him meet your family because you know he’s a good man who acted to save the lives of others totally selflessly. He gained nothing, apart from friendship as he and the girl stayed in touch for years after the event.

I’m telling you this because I’ve been in the same boat.

Following my brain injury I had to give up my career at the ripe old age of 32. I felt washed up and a burden to my partner James. It took a long time for me to start to see that my value to the world has nothing to do with my job. (If you want to know more about how I bounced back, you can read about it on the page 6 weeks from surviving to thriving course.) How many of you reading this right now think my previous career has any relevance to the impact my writing has on you? I know I have touched on my career before, but I bet most of you don’t remember the details because it just doesn’t matter! It’s about how you make people feel, that’s what people remember, not words. As my job titles probably didn’t create an emotional response in you, so your brain just discarded it. But my honestly about my journey could have resonated with you, and so that’s what your brain decided to connect with.

If you’ve hit rock bottom, it’s a long journey back, but know the only way is up. Don’t feel alone, many survivors feel a lack of self-worth after a brain injury. I hope this will help you start to disentangle your self-worth from your career as I think for a lot of us that is a key starting point.

Other articles you may like:

Has your brain injury affected your career? Do you feel that has had an impact on your self-worth?

The post Brain injury survivor explains why your career isn’t your self-worth 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: 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.

Guest post: Jeff Huxford on accepting life post brain injury

Michelle #jumbledbrain — Thu, 08 Feb 2018 12:11:17 +0000

This year I am inviting other brain injury survivors to write guest posts on my blog. That way you get more than just my experience or point of view. So kicking us off is Jeff Huxford. He kindly offered one of his published articles from his own blog jeffhuxford.com for me to share with you. I decided it would be useful for you to hear how he felt about accepting the new Jeff, as he found he had some limitations and couldn’t continue as a doctor anymore.

JEFF HUXFORD, M.D. CURRENTLY LIVES IN FRANKLIN, TN, WITH HIS WIFE (JACQUI) AND TWO CHILDREN (JAYSE, JENNA). AFTER HIS MEDICAL CAREER WAS CUT SHORT BY A TRAUMATIC BRAIN INJURY, HE BECAME A BLOGGER, AUTHOR, AND SPEAKER. HIS FIRST BOOK, FINDING NORMAL: AN UNINVITED CHANGE, AN UNEXPECTED OUTCOME WAS RELEASED IN 2018. HE ALSO BLOGS AT JEFFHUXFORD.COM JEFF CAN BE REACHED BY EMAIL AT NEWNORMAL5312@GMAIL.COM.

Giving up

“I gave up!”

I used to feel embarrassed for saying this because giving up meant that I had failed to achieve what I had set out to achieve. It was certainly opposed to what I grew up believing and to the lessons I learned from an American culture that stresses the need to “win at all costs.” I was also well aware that some people would likely judge me for it. They may feel like I should have tried harder or given it more time, but I am learning to ignore these people, because I have come to believe giving up was necessary for me to move on following a traumatic brain injury (TBI).

When I started recovering from my TBI, my goal was to regain my former self and former life. Because I grew up believing anything was possible with time, hard work, and determination, I was confident I could do it. I could be the same husband. I could be the same father. I could be the same friend. I could have the same personality. I could be the same doctor. I could have the same hobbies. To support my quest, TJIJA (Till Jeff is Jeff Again) shirts were made and worn by my friends and family. But TJIJA never happened.

There are still days I want my formal life back, but I finally gave up on it. I admitted I was going to be different, but this was just the beginning step. I also had to learn to accept it, and this has been a process. Learning to accept and embrace my “new normal” has been an experience that has not only been humbling, but life changing and life giving as well.

After my TBI, trying to return to my old self proved to be a never-ending, tireless, exhausting, and fruitless journey. But I finally gave up on it. Giving up wasn’t easy for me to do, but without doing that, the process of accepting and embracing the new me could have never started.

Sometimes giving up and accepting things for what they are is the only way to win.

I think most of us can relate to what Jeff is talking about. When he mentions how the culture of the western world, the “can do” attitude, put extra pressure on him. I scratched the surface of this feeling in Don’t guess what I need – Words of a brain injury survivor, where I mentioned how I was conscious of how I should have the British “stiff upper lip”. It’s not quite the same thing as what was driving Jeff, but the result is the same. We both tried to force our way through, believing that mind over matter could make the difference, only for it to end in disappointment.

But as Jeff has proved, the key is accepting your current self and adapting to your new life. He has proved his talent in writing, and his new book will be out in just a few weeks. It is available to preorder on his website now. You can listen to Jeff and his family talk about how his brain injury changed their lives on his 5 minute video, The Huxford Family Story: “Finding normal” after a traumatic brain injury.

Other articles you may like:

How did you go about accepting your life post brain injury? What advice would you have for others who are going through this process right now?

The post Guest post: Jeff Huxford on accepting life post brain injury appeared first on Jumbledbrain.

Stuck in rigid thinking after brain injury

Michelle #jumbledbrain — Thu, 25 Jan 2018 17:35:24 +0000

Before my brain injury I liked to think of myself as open minded. I’m sure that I was probably susceptible to some preconceived ideas, but I would listen to a well thought out debate even on those. Besides, being a woman I have been known to change my mind. All the men reading this are knowingly nodding. However, now when I’m in the moment, sometimes I can’t get past my rigid thinking. It borders on obsession…

A brain injury can give rise to some unusual behaviour.

In the first few months following my accident, I remember a weird incident between my partner, James and I, when taking out the rubbish. I’m hazy on the details, but I know I was really keen on ensuring the rubbish bag was done up tightly to avoid it spilling its contents in the bin outside. James was trying to take the bag outside, when I stopped him and was tying more knots. Suddenly his patience snapped, and he told me “That’s enough! It’s like you’re obsessed!”

Whilst I remember the feeling of needing to be diligent, I don’t recall what made me think I needed to do even more. Nevertheless, I like to think I have moved past this behaviour. But I might be just deluded. When I really think about it, I can see I do still have obsessive moments.

As much as I can be motivated to complete something, there are various reasons why it might take literally days.

Some days, with all the good intentions in the world, I still can’t get everything I planned done. Like the other day when I was going to do the ironing. My back was hurting so I decided to sit and rest it for a few moments. That plan promptly went out the window when I fell asleep. But other days I can be so finicky. Like when I’m creating images for this blog. I put in special effort in the ones for Pinterest (which are hidden on the page, to see them you have to pin the post or follow me on Pinterest.)

Sometimes I can waste hours achieving nothing because my rigid thinking stops me from seeing there’s an easier way to do whatever it is that I’m struggling with. I don’t even recognise that there might be another way. Instead I persevere with my failing method. When I walk away and come back another day, it dawns on me that there was another blindingly obvious method. Even then, rarely do it see that I could have gone with a different design. I’m too obsessed with my original idea to be able to get past it.

So next time someone tries to give you some advice and you’re get not hearing it, think of me. Whilst they might not be right, try to pause before you dismiss it out of hand entirely. Many brain injury survivors are prone to rigid thinking, and perhaps their suggestion might make more sense once you’ve had time to reflect.

Other articles you may like:

How do you try to overcome your rigid thinking? Does your brain injury affect you in a similar way?

The post Stuck in rigid thinking 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.