relationships 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.

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

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How the pandemic affected brain injury survivors

Michelle #jumbledbrain — Mon, 10 Jan 2022 17:26:12 +0000

This article was oringally posted on the Brain Injury Touch points website, and there you can see a video of me reading it out >> watch video

The coronavirus pandemic has affected us all and, in many cases, the changes to our lifestyles have taken a while to get used to. Yes, we were pretty good at being “stay at home heroes” when we were first asked to (especially since it was all pretty scary and it was the best way to stay safe) but as the lockdown in the UK is easing, we are having to adjust all over again. Being able to get out and escape the cabin fever is a welcome change, but with fears of a second outbreak, it’s still an apprehensive atmosphere.

While others complained about isolation, brain injury survivors faced more severe consequences of lockdown

For the brain injury survivor community this has been a particularly difficult period, and still is. On the one hand, where everyone else was having to acclimatise to the isolation it caused, we were already familiar with that. Unfortunately, invariably our social network seems to evaporate once we are home and out of the “danger zone”. Once people think we must be OK having been discharged from the hospital, they start checking in on us less and less, drifting away as they refocus on their own busy lives. However, more importantly, what the lockdown meant was vital rehabilitation services had to be paused. This included everything from appointments for physio therapy to support at home which was considered “non-essential”. Whilst we may be able to survive without the support workers assisting with tasks that might be considered simple to the rest of the world, it put many in a desperate situation where the confusion from cognitive difficulties ruled their days.

One of the most difficult changes lockdown caused, was the pause in support groups being able to meet up. These groups represent a lifeline for many brain injury survivors because they finally can feel understood and less alone. Whilst many groups have attempted to continue with virtual meetings, this is less than ideal. Video conference calls can bring on fatigue, something most survivors battle with already. I was brought up being told “Stop staring at the TV, you’ll end up with square eyes,” and whilst that isn’t exactly factual, the sentiment is still true. Too much screen time is bad for us for a number of reasons. Educational psychologist, Christine Fonseca, MS wrote in an article for Psychology Today: “While researchers are only just learning of the true impact of screen time on cognitive and emotional processes, the early findings are not great. As little as two hours a day of screen time has been demonstrated to negatively impact the brain, with reductions in grey matter and changes to white matter. Most researchers acknowledge the dopaminergic impact of screen time—screen time use leads to the release of dopamine similar to the way drugs like cocaine impact the brain. This has led to alarm regarding the long-term impact of increased screen time use (including time on phones, tablets, video games, and TV). These changes in the brain can result in reduced attention, memory difficulties and changes in our ability to think, read, and write at a deep level.” Whilst it’s commendable that facilitators are putting in the effort to try to continue holding these meetings so their members don’t feel forgotten about, it isn’t an equal substitution

Is social anxiety going to increase?

I for one have gladly been wearing a mask when I go out, but am surprised by how few others seem to. Nevertheless, I need to remember to hold my judgement because a number of these people may have legitimate reasons that prevent them from being able to. One brain injury survivor pointed out to me the other day that the mask can cause dizziness for them when the air gets too hot. There are many different reasons why someone might not be in a position to wear a mask, but I do hope those who are able to, do. Having gone through and just about conquered the social anxiety that my brain injury caused, this pandemic is triggering it again a bit. Whilst before I just felt awkward and out of place because I constantly told myself my behaviour made me look weird, I’m now hypervigilant about the spread of this virus. And yes, you might not have any symptoms, but that doesn’t mean you’re not a carrier for it. I don’t think I could live with the guilt of passing on this awful virus to someone for it to then take their life. No, instead I’m still self-isolating as much as possible so I don’t have to worry about it. However, I do wonder if I will ever be fully comfortable with being sociable again.

The ups and down of working of home that shielding from COVID-19 has highlighted.

The thing I find myself thinking about the most since this pandemic is the question “what will the future look like?” For the last few years, we have been watching our high streets change as society’s habits have changed. But this situation has accelerated that and forced many businesses to adapt. Most people are working from home now, but if that alters the workplace for the long-term, surely that will make it harder for people to build relationships? When I left my job because of my brain injury it highlighted how many of my friends were work colleagues and how much of our interactions where based on what we had in common: work. Plus, even when there were times that I wasn’t relishing my work, the people made it worthwhile and so I enjoyed going in each day. As someone who works from home permanently, I do miss my work relationships and I have struggled to make new friends as I’m not meeting new people. Alright, I meet people in passing, but the work environment throws people together, forcing them to see each other regularly and learn more about one another. This has always been a strong motivator for people who have been out of work for health reasons to return to work. The independence, status and purpose it offers are still important and remain true however, which is good. Maybe for some who want to make a return to work, the new flexibility this creates will suit them better.

As with every situation in life there are downsides as well as opportunities. Whilst none of us would wish for this pandemic to have happened or so many lives to have been lost, I still hope that it will enable us to learn and build a better future for everyone.

Other articles you may like:

How has the pandemic affected your life as you cope with a brain injury?

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How I explain what living with a brain injury feels like

Michelle #jumbledbrain — Tue, 21 Sep 2021 15:04:55 +0000

There are so many names for a brain injury; TBI, stroke, brain damage, brain tumour, concussion, PCS… and yet actually describing what it’s like to live with THE most important organ in your body not working the way it used to, is exceptionally difficult. As most of the people we are conversing with haven’t had the bad fortune to experience a brain injury themselves, it’s hard for them to put into context what we are trying to outline. So often I hear from other survivors who feel totally misunderstood by their family and friends who unintentionally continue to diminish what they are having to deal with. Unfortunately, as a society we have been doing this for a long time. Women take the mick out of men for the “Man Flu”, by assuming that they have coped with worse symptoms than the man is suffering with. Men blame a woman’s heightened emotions on her “time of the month”, insinuating that her response doesn’t need to be taken seriously because it’s only a temporary effect due to her hormones. Many of us have worked somewhere where there has been a member of the team who calls in sick more than the average, and although the person may be well liked, there’s still an underlying sense in the team that they are just being a bit lazy and a let down. However, as no one can actually physically feel what an individual feels in a moment of time all of these examples are where people are downplaying the peoples health condition without merit to do so. This is psychological invalidation, even when a person doesn’t recognise that they are being dismissive. Often people need to see or hear it from a third party to be able to consider that it’s not just one person being “overly dramatic”, that it does actually happen to other people too. That’s why I’m going to describe just a snap shot of what living with a brain injury is really like.

Thinking can be like walking through treacle.

If you’ve ever sat an exam and afterwards wondered how you answered any of it because now you’re so shattered you can’t remember even the simple answers, you’re on the right track to what most days can feel like for a brain injury survivor. Women who have had “baby brain” or “menopause brain fog” should be able to relate to this. Men, the only other comparable example I can think of for you is trying to work with the worst hangover ever, the type where even putting in your password in your work computer feels like the trying to spell “cataclysmic” in Russian. Whilst these examples are scenarios which will pass and clarity will return, for us clarity is but an occasional visitor. The most frustrating part is that we know the answer is in there and when we work really hard we can find it, but it’s exceptionally draining.

Having a memory which has more in common with Swiss cheese.

A persons memory is always changing as your brain holds on to the things that you use more often, and throws away the memories that you never look to anymore as we don’t have an infinite capacity for them. So we have all experienced a time when someone brings up a scenario from the past that is as clear as if it was just yesterday for them, but we can’t remember it all. Take that feeling and that is what it feels like when you’re told you have told the same story 3 times in the last hour because you don’t remember that you’ve already told it today.

And yes everyone has done that thing where you walk into a room and ask yourself “what did I come here for?” because you’ve forgotten what you were doing, but believe me that it just the tip of the iceberg of what dealing with a damaged memory is like. In Clearly lost, the snag of brain injury I described what it was like to get lost in my own town. I just couldn’t remember how to navigate between different locations and it took me ages to achieve what I’d gone into town for. It was like when you visit somewhere for the first time but the map isn’t clear and the GPS on your phone isn’t working. You know you must be sort of in the right area but can’t figure out where you’re going wrong.

Planning any social activity means blocking out the whole week.

Fatigue is debilitating and it isn’t just about whether you had a good nights sleep or not. Because an injured brain is having to work so much harder to do even the simple things, social events drain us much faster than other people. Trying to follow the conversation/s, dealing with a different location, bright lights, background noise, it all adds up and we struggle to filter it out the way other people do. I recounted a disastrous experience I had at a restaurant because of these things in Light and noise sensitivity after brain injury and how that put me in an awful mood. I then was good for nothing for days later because I was so exhausted all the time. Believe me, I was ashamed at my behaviour at the time, but there wasn’t anything I could do about it. So if we seem moody and antisocial, please don’t take it personally.

There are some things that can be extremely difficult to do due to extreme weakness.

Unless you’re ambidextrous, most of us have a dominant side, with the other not being as strong or coordinated. But when I say I have weakness in my left side following my brain injury I’m talking about something much more severe than that. A few times I have tried to indicate what this can translate to and affect my everyday life, but I recommend Held back by weakness from brain injury where I explains how I couldn’t even open my front door! Imagine that, being a prisoner in your own home just because the nerve damage it you stops your muscles from being able to transfer enough force. Or how about not being able to ride a bike because one leg is not able to peddle and you become unbalanced. That’s what we mean by weakness, not unfit coach potato weakness.

Emotions can be sudden and more intense than we are able to handle.

In Unstable emotional lability after brain injury can be tense I outlined how our responses to situations can be disproportionate, and nearly 7 years after my accident I still have these moments. These days I am able to recognise that the situation doesn’t warrant the scale of emotions that I’m experiencing, but it’s still a challenge to calm myself down. Recently I was totally livid about something so miniscule that I knew I had to go walk it off. But it was 1 o’clock in the morning, so rather than wonder off in the dark, I did hundreds on circles in my tiny garden with the security light behaving like my spot light. (Sorry to my neighbours if I woke you up and confused you.) It still took about an hour for the episode to pass. All the while I was telling my concerned partner how I understood I was being ridiculous (I was so embarrassed about how stupid the thing was that I wouldn’t even admit to him what had upset me so much) and yet I was still fuming.

I could go on all day seeing as a brain injury can impact EVERYTHING, but I thought I should keep this succinct enough for non brain injury survivors to be able to take it in. The important point is that although we might not always be able to describe what we are going through, we need your compassion, not judgement. Believe me, we WANT to feel better, think faster, be able to control our emotions, but sometimes we just can’t. We know that can be difficult for others to deal with and we appreciate your support and understanding. Bear with us, our good moments do still visit and it’s worth the wait.

How do you describe what living with a brain injury is like?

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Why you’re wrong if you brand a brain injury survivor as toxic

Michelle #jumbledbrain — Thu, 20 May 2021 16:15:29 +0000

Social media is full of ideas and there are a lot of people who try to remind others to look after themselves. That is an important message as we can’t pour from an empty cup, i.e. if we have used up all our energy and not replenished it we have nothing else to give. I think we all can appreciate this sentiment. But what I get more concerned about is when I see people throw around words which have become the latest trend to use that encourage people to brand others as something rather than try to understand them. The word I’m particularly concerned about is toxic.

How easy it is for the brain injury survivor to be unfairly labelled as toxic.

I know one former friend stopped talking to me because she “needed to surround herself with uplifting people who reflect her kind of energy.” This happened within the first year of my recovery process. If you have been following me for a while you will know that I was also grieving the death of my mum and trying to help my dad cope as he declined with Alzheimer’s. I fully admit that I wasn’t much fun at that point in my life and I probably didn’t offer much support with what she was facing at the time as my plate was already over flowing with trauma. Maybe I talked too much about how I felt my life had fallen apart and burdened her too much with it all. This wasn’t someone I saw a lot of so it’s not like she had to hear it every week, and I guess we just weren’t as close as I thought. Honestly I’m fine with us going on our different paths, that’s just life. But what I don’t relish, is the realisation that what she was actually doing was branding me as a form of toxic.

What is a “toxic” person and why a survivor shouldn’t wear this label.

It appears that there are a few different behaviours which are being called toxic. I want to run through them and explain how a survivor may well behave like this at times but why it’s just ignorant to brand them as toxic.

THE CONVERSATIONAL NARCISSIST – Someone who talks about themselves a lot, rarely asks the other person any questions, appearing that they are more interested in themselves and what is going on their life at that time.

WHY THIS DOESN’T MAKE A BRAIN INJURY SURVIVOR “TOXIC” – When you have gone through a major trauma your body and brain go into “fight or flight mode”. You might find that you’re more jumpy than you were before as your system is on constant alert for danger. But also you’re brain is trying to analyse what you have been through, unpicking all the little details in hope that it an find a way it put it right again and keep you safe from it happening again. This is a behaviour I have no doubt that I displayed a lot with my former friend without realising it. I can tell you that this doesn’t mean that I didn’t care about her, just that I thought as we were friends she would be willing to help me through all the thoughts and emotions I was being bombarded with at the time.

THE EMOTIONAL VAMPIRE – Someone who will find a negative angle in most situations. They are often sad and pessimistic which can take the wind out of the other persons sails.

WHY THIS DOESN’T MAKE A BRAIN INJURY SURVIVOR “TOXIC” – Whilst we are still processing the trauma we have been through our brain will continue to look for signs of “danger” in any given situation. It is looking to avoid any more drama, disappointment or heartache as well as physical danger. This is another behaviour I know I was guilty of with my former friend. She had just become an Arbonne consultant which she was doing whilst continuing with her very successful career in another area. I listened to the sales pitch she gave me about why I should sign up as a consultant which the lady who’d signed my friend up chipping in on too. I was worried about investing in something that was designed to make others rich and explained how I thought this was a pyramid scheme. Actually, it’s a multi-level marketing (MLM) business. The only difference between a MLM and a pyramid scheme is an MLM has an actually product to sell. However, they both rely on each new level recruiting new consultants. The higher levels take a percentage of the sales from every consultant they have recruited, so the higher up you are the more money you make. But those at the bottom of the pile often just invest money buying the products and may never make money. So yes, I did rain on her party and she probably didn’t like to way I did it in front of this other lady. But when you are still in “fight or flight mode” from your brain injury it can only be expected that like a cornered animal you will either look for a way out, or will bare your teeth.

THE FIBBER – Someone who regularly embellishes, exaggerates or just claims things that just aren’t true. This is seen as being wrapped up in their own self importance, attention seeking and dishonest.

WHY THIS DOESN’T MAKE A BRAIN INJURY SURVIVOR “TOXIC” – Often brain injury survivors can confabulate, which is where the brain can try to fill in the gaps in our memory with things that didn’t happen or aren’t accurate. (You can read more about these in Confabulation is not lying. False memories due to brain injury.) We genuinely believe these confabulations, so whilst our brains are lying to us, we are not being dishonest when we relay them to other people. We think they are real and the truth. Yes this might be a little wearing for others to try to unpick what is accurate, but we don’t mean to cause any harm.

THE CONTROL FREAK – They have lots of rules to follow for different situations, such as the environment you meet in (lighting, background noise etc.) Plus when they disagree with you about something they won’t stop trying to convince you that they are right.

WHY THIS DOESN’T MAKE A BRAIN INJURY SURVIVOR “TOXIC” – Many of the rules a brain injury survivor is trying to impose on a situation, are actually their coping mechanisms. They may suffer with noise and light sensitivity and these rules help them to manage their fatigue and avoid additional pain. I have been that party pooper who has begged someone to turn the music down which wasn’t even loud. There can be just a particular vibration or pitch that just overloads the injured brain of a survivor. Think about it, if a wheelchair used said they could only meet somewhere with that’s wheelchair accessible you wouldn’t think they were being controlling, just asking you to make choices which means they can safely join in.

If we disagree with you and won’t let it go, that could be us struggling with our slow processing. Sometimes with the damaged pathways it can take us long to take something in and analyse it properly. That might mean we keep pushing back because it doesn’t sound right to us. We might eventually agree with you once the brain has mulled on it for a while, or we might still not agree with you. A brain injury doesn’t mean we’re stupid or that you know better than us. It could be just that on that occasion you’re wrong and we’re trying to do you a favour. We might have lost the filter that would kick in and tell us to accept that you’re never going to agree and so change the subject. Yes that can make the situation uncomfortable, but in most cases in time we can regain this skill so don’t write us off.

THE DRAMA MAGNET – They are always complaining that something is wrong. Offering advice doesn’t help, and the moment one crisis has been resolved, another comes along.

WHY THIS DOESN’T MAKE A BRAIN INJURY SURVIVOR “TOXIC” – Again this comes back to the trauma a brain injury survivor has been through. Many of the things they are conveying are because their life has been turned upside down. Often it has cost them their career as well as their health, and unfortunately a loss of income effects virtually everything. When in this situation it’s difficult to look ahead and plan so you’re stuck in this moment, scared of what is coming next. Just like it’s not helpful to tell someone with a chronic illness to “just try going vegan”, without understanding their condition, unprofessional advice might not be supportive. We’re not always looking for you to resolve it for us. Talking about our worries can help us process the emotions and we might privately find a way later which is in part thanks to you offering a non-judgemental ear.

Please be careful when using these terms to brand someone as a bad person.

You might not be able to cope with the behaviour that a brain injury survivor has started to display as a result of their injury, and of course your mental health is just as important. If that’s the case I agree that you need to back away until you are in a position to deal with them in a healthy way, or that they have recovered a little more. But please don’t throw around terms like toxic as it’s unhelpful to brand people like this. A brain injury is a disability, but with the right support we still have a lot to offer and shouldn’t be discriminated against.

As a brain injury survivor have you ever been branded as toxic? What do you wish people understood about why you do the things that you do?

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Good days & bad days, but with a brain injury two are never the same

Michelle #jumbledbrain — Mon, 15 Mar 2021 17:25:03 +0000

Living with a brain injury is like gambling every day. You don’t know what you are going to get, but you’re always hoping today your number will come up. I know when one of my good days comes around I often push my luck a little too far. I’m like the gambler who thinks they’re on a roll, and suddenly they lose it all.

As bad days out number the good, temptation can get the better of me.

Brain injury survivors don’t really get used to the tired, foggy feeling. It’s more that you come to expect it and you’re not surprised when you’re clumsy and making mistakes. So when you’re having a rare day of being on top form, it’s like nothing can stop you. Until it does.

I know I should pace myself, and savour these days which are virtually an endangered species. But that would be too sensible. Besides I feel like I always have to be sensible now. I want to be able to have carefree fun again. But as an adult there is no such thing as carefree really. We are responsible for things, like paying the bills, keeping a clean and tidy home and planning for the future. Children however should be able to experience pure, unadulterated fun.

My advice for parents with children living with a brain injury.

Firstly I would like to tell you I’m not a mother, so I’m sure the Mums and Dads reading this know lots more than I do about parenting. But I can tell you some things about being a brain injury survivor that perhaps your child struggles to express.

When I feel I have the energy and mental capacity for once to do something, the last thing I want is someone telling me to slow down. Yes, I know it’s said with my best interests at heart. But I don’t want to feel like I’m disabled and have to sit everything out. I realise that in many ways I am disabled, but think of me as Wendy from The adventures of Peter Pan. She shouldn’t have been able to fly, and compared to Peter she was disabled. But when she was having a good day (in the form of some fairy dust) she was away! As the oldest she knew that really they shouldn’t fly out the window, but the opportunity was there. So her sensible hat slid off, and she wanted to experience the impossible.

However, when I do stop and rest, I realise then how much I needed to. So instead of having to be the spoil sport who is always saying no, try another tactic. Say “poor old Mum/Dad needs a rest for a moment, let’s just sit for a minute.” That way they are doing it for you, rather than being told that they have to stop because of their condition. No one wants their weaknesses pointed out all the time. Instead we want to have things to celebrate.

It’s important they learn how to manage their condition, but that life lesson is happening all the time. We only get to be young once. I’m not saying let them run riot everyday and injure themselves. Just occasionally let them run with the wind and create those memories which will last a lifetime.

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What advice would you have for families who are struggling to understand what the brain injury survivor in their lives is going through?

The post Good days & bad days, but with a brain injury two are never the same appeared first on Jumbledbrain.

Why outbursts after a brain injury happen

Michelle #jumbledbrain — Thu, 16 Jul 2020 11:46:49 +0000

As someone who took care of her father as Alzheimer’s took away the person he was, I have always felt great empathy for family and friends of a brain injury survivor. I know it’s not easy and can even be heartbreaking. However, I have seen a lot of comments from various people asking for ideas on how to reduce the number of outbursts from the survivor in their life. This then prompts people to start talking about what drugs to try them on, which I disagree with as only their doctors who know their medical history should be commenting on this otherwise it can be dangerous. They will help identify what is causing the outbursts after a brain injury, as this could be physical pain, an infection or mental health issues like depression. My dad struggled a lot with this, getting angry with his carers, and his doctor and I had a good chat about it. As he was still mourning the death of my mum, and the upheaval in how much his life was changing, we agreed he was suffering from depression. It did help him get control of his reactions, but as all drugs have side effects it was important to talk this decision through with someone who could review all his other medications as well. Instead I thought I would try to help people understand what is happening on a very basic and relatable level which could help it feel more manageable.

“Like a Bear with a sore head.”

We’ve all heard this expression and many of us use it when referring to someone who seems angry and/or grumpy. But have you ever really thought about what you’re actually describing? An injured animal who can’t explain to you how they feel, but their pain as making them more aggressive because they are feeling more vulnerable than normal. Or how about when you take your injured pet to the vet? My cat Dexter loves people, and is the most laid back creature you’ll ever meet. But there was one time he had a cat bite on his head that got infected. It was very uncomfortable for him and the vet flushed it through with saline to clean it and injected him with antibiotics. Well he bit the vet has hard as he could and was using very colourful language at her. She was doing what had to be done to help him and yet he had this outburst at her. Does that make him ungrateful? No, it makes him scared, confused and in pain.

Don’t assume they are seeing the situation the same way you are.

It’s very easy for a brain injury survivor to become overwhelmed with what’s happening around them. Even just bright lights, too much noise or crowds of people can over stimulate them. It might seem calm enough to you, but it can feel chaotic to them. Again, think about when you are transporting your pet to the vet; you often can help calm them by covering their pet carrier in cloth to cut down the light. It’s not that they’re stupid and as long as they can’t see anything they become calm, it’s because you’re reducing the visual stimuli. The more an individual becomes overwhelmed the more defensive they become because they just want something to stop.

Now, if you’re thinking “I get that Michelle, but I expect a cat to act like that because it can’t say what it feels and I can’t explain what is happening. But I have explained to my survivor what’s happening and it’s nothing to worry about and yet they still bite my head off”, you need to accept that a brain injury can interrupt that communication process. Even if they seem to have understood you, or you think you understand what they are experiencing, be open to the fact that it’s not always as black and white as that.

Allow the situation to diffuse.

Once someone has become upset, scared, overwhelmed or paranoid, the best thing is to allow them to calm down. That could be reducing the noise, distracting them with an activity they enjoy or just leaving the room. When I’m getting wound up James makes me a cup of tea and gives me the cat. These 2 things always calm me down. I might then be very quiet whilst I reflect on what got me so uptight, but that’s a good thing. I often find that the following day I can talk about what got me into that state properly. James’ patience is key here. With his kind smiling eyes I can see he wants the best for me and he gently asks if I’m feeling any better but doesn’t go into an interrogation. By giving me the space I need I’m able to find the words in my own time to describe what happened. Plus, I reflect on my behaviour and can start to appreciate what my triggers where. This is really important as we can both learn what to do differently in the future to be able to intervene before it gets so bad. If you struggle to work out why it’s happening, together you could keep a diary so you can look for any patterns in their triggers.

If it’s a particular task that they are reacting to, consider if it has to be done right now.

There were times that my dad just didn’t want to get out of his PJ’s. I don’t blame him, we’ve all had days like that! But imagine what it’s like to have someone trying to force you to get dressed when you just don’t want to. When you’re a kid you have to accept that your parents are in charge and when they say “get dressed”, you get dressed. But when you’re an adult you’re used to making your own decisions. You don’t want to be bossed around and then it can make you defensive. So unless dad had to get dressed to go to an appointment, he was allowed to stay in his PJ’s until he wanted to get changed. That might be an hour later, or it might not be at all that day, but as it wasn’t doing him or anyone else any harm, it didn’t matter.

I know it can feel like you’re stuck between a rock and a hard place seeing as you’re only trying to help yet sometimes it can feel like you can’t get anything right. Believe me, I’ve been there…. on both sides. So that’s why I want to break it down into 5 steps for you to be able to make things more comfortable for you and the brain injury survivor going forward.

5 steps for managing outbursts.

Identify what the problem is – Is their environment comfortable? Are they reacting to someone else’s attitude? Are they in pain?
Examine the situation – Does it always occur in the same place or with particular people? Keep a diary to be able to track patterns.
How is the survivor feeling when the outburst happens? – Do they feel patronised or ignored? Is something making them anxious? Are they becoming overwhelmed and tired or are they feeling misunderstood and frustrated?
What are they reacting to? – Are the struggling to cope with a change? Are they having an unpleasant memory or is someone’s personality provoking them?
Make a strategy – Look back at your tracking notes so you can avoid situations which cause the outbursts. Remember that a method that works well one day might not be the right one next time. You need to develop a few different methods, because we are humans not robots. Make sure you are working with them, not against them.

Other articles you may like:

Are you a brain injury survivor who feels no one understands your outbursts? Or are you a family/friend who has got tips that can help others?

The post Why outbursts after a brain injury happen appeared first on Jumbledbrain.

Are divorce settlements fair after a brain injury?

Michelle #jumbledbrain — Wed, 17 Jun 2020 09:39:33 +0000

Disclaimer: This article is written specifically regarding UK law and not about any other international territories. It shouldn’t be taken as legal advice, you should consult a lawyer if you are considering or going through a divorce.

Following a life changing accident, it can be difficult to plan for the future. You’re living day to day so unless you have a crystal ball, it feels impossible to think about what lies ahead. Yet once we have been allocated compensation money to aid our recovery from the accident, planning is exactly what we need to do. I’m not talking about finding the right case manager and what therapies to engage in, I mean how to make sure that in the event of a divorce that your former spouse doesn’t take half of the money that is supposed to sustain you for many years, or even for the rest of your life.

Survivors of a traumatic brain injury which was the result of an accident caused by someone else can receive very substantial funds based on the nature of their injuries. A life changing injury requires a life changing sum of money to attempt to “put you back in the position you were before the accident.” Putting a price on that is very difficult because you can’t be in the same position ever again with a brain injury, but the money needs to enable you to have the best chance possible of a recovery and a reasonable quality of life. Every case is different, but if I said that often it is possible to buy a house without a mortgage with the compensation you’ll understand that I’m talking about a lot of money.

How divorce can have a lasting effect on a brain injury survivor.

I met a lady who was knocked over by a bus when she was a teenager and sustained a major brain injury. She has never been able to work as a result, and therefore had a very large compensation package to sustain her for the rest of her life. She went on to get married and have children and a reasonable life despite her difficulties. No one gets married thinking that the relationship is going to ever end, so she didn’t ever ask her partner to sign a prenuptial agreement. The Office for National Statistics (ONS) estimated in 2012 that 42% of marriages in England and Wales would end in divorce, and unfortunately, her marriage went the same way. The result was he took a substantial sum and now she struggles financially. As she is unable to work there is no way for her to resolve this situation and wishes that she had safeguarded her money.

This got me thinking, is it right that the law leaves it up to the brain injury survivor to make the decision on if they need to ringfence their compensation settlement so it can’t be counted as martial assets in the event of a divorce? Whilst it’s fair to say that many relationships become strained following a brain injury, there isn’t reliable data to say if the divorce rate is directly affected by it. But even if we assume it’s the same as the national average of 42%, that means 4 in 10 married brain injury survivors will get divorced, putting their compensation money at risk.

You’re considered equal, but is it fair?

In the UK both partners in the marriage are treated equally, and so when marital assets are divided up, both people have to be in the position of being able to have a reasonable life. That means the courts will try to make it so both of you can afford to live and try to make sure you both have enough money for a new home. That sounds pretty fair, but what if the majority of the assets is your compensation which was supposed to pay for your therapy, care and loss of earnings for the rest of your life? Suddenly divorce can mean it’s even more difficult to cope as a brain injury survivor.

The law does offer some protection (albeit a bit flimsy) but only if you have planned ahead to ringfence your compensation package in the event of a legal separation. Your first option is to put the money into a trust which can be accessed as you need it, although this does carry a monthly fee. It makes it less likely to be considered a marital asset so it could avoid it being a part of your divorce settlement. You can set up a trust later if you wish, but if you do and suddenly ask for a divorce, it will be seen as a cynical move. The court will say you only opened the trust knowing that it was likely that you would motion for a divorce and that the trust was your way of hiding martial assets. Therefore, it will only has the chance to protect you if you move it into a trust after it’s been issued to you and the marriage continues for a significant time thereafter. However, as trusts are often used as a way to manage your money for a number of other reasons, a Judge still might decide to consider it a marital asset regardless. The second option is to have your partner sign a prenuptial or postnuptial agreement where they sign away any claim to that money. These work in theory, but they aren’t really part of the law here so it’s up to the Judge in your case as to whether they want to take it as read. Therefore, this method is not a guaranteed way to protect your money either, although most Judges probably would look favourably on it.

But is it right that we have to even try to make decisions about our future in this way?

When claimants are issued with their compensation package, they are given information about trust funds. Unless they have an appointed power of attorney set up, they are left to decide if they want to use a trust, or just have the money deposited into their bank account. However, it is well known that often survivors struggle with decision making, so should it be up to them to make such an important choice? Leading brain injury charity Headway explains how survivors struggle in their factsheet Difficulties with decision making after brain injury:

“People can be affected in different ways – some survivors may find it hard to make a decision at all, finding that even ‘simple’ decisions, such as what to wear, become very difficult to make. Some people become impulsive, making hasty decisions, apparently acting without thinking things through. Some people may find it difficult to think through the consequences of an action and so make decisions that are not in their best interest. Poor judgement in relationships, with money or in business can have devastating consequences for the brain injury survivor and their family. Some survivors may make a decision and have a plan of action, but it can still be difficult for them to follow through with the plan. It is as if their intention, or goal, becomes neglected. This can sometimes be because they become distracted by other tasks or activities. They may ‘forget’ to do things, not because they have completely forgotten about what needs to be done, but rather that it is difficult for them to keep the task in mind, such as taking medication or passing on a message. Self-awareness can also be affected by brain injury, so that the survivor is not aware of their problems. This is known as lack of insight. The survivor may fail to achieve important tasks, and others may consider their decisions as bad judgement. One of the first challenges to overcome is therefore related to the survivor achieving a degree of self-awareness and understanding of the problems they are experiencing.”

Personally, I declined to use a trust fund and currently I’m not married. I’ve been with my partner James for 12 years (and counting) and I’m still waiting for him to pop the question! If he ever gets around to it, I guess I would have to ask him to sign a prenuptial, even though I trust him with my life and don’t think for a second that he would ask for half of my money. I didn’t put my money into a trust because I wanted to have full access to it and didn’t want to pay a monthly fee to those who would manage it. But if I’m honest I probably didn’t put that much thought into it. I went for the easy option, but whether it was the right decision is another question.

Why didn’t anyone even test if I was capable of making that decision?

In the UK we are allowed to make our own decisions as long as we are deemed to have capacity. After witnessing my Dad got through the test several times as he deteriorated with Alzheimer’s I know more about this process than most. The test looks for your comprehension in general rather than if your decisions are good. You are allowed to make “unwise” decisions if you are deemed to have capacity and name the possible consequences of these actions. And I was never asked to complete this test as a survivor of a serious car accident, so I’m not sure how many brain injury survivors ever have their capacity accessed. Therefore, even if the next person thought it was “unwise” for me not to put my compensation into a trust, no one had even questioned if I was fit to make that decision.

Here’s my question to you:

Do you think it’s right that brain injury survivor’s compensation can be divided up in divorce? Or should the government change the law to protect the person the money was intended for? Currently most MP’s would argue that as there are options in place that we can choose to use i.e. trust fund or nuptial agreements (despite the fact that these are not a guarantee either), there isn’t much appetite in government to make any changes.

I have to say that I personally don’t think compensation money should be considered a martial asset. I find it insulting that I either have to pay someone to manage my money or ask my loved one to sign something that might not even stand up in court. What a great way to enter married life, it’s like saying “I know this isn’t going to last and I definitely don’t trust you.” If the law was changed so you didn’t have to go through this process, that can of worms wouldn’t be dumped all over you. But maybe you have a different perspective on it. I’d love to hear what you think. Maybe you are the spouse of a brain injury survivor, how would you feel if you were told you couldn’t have the compensation package considered in your divorce? Maybe you gave up your career to care for them and therefore a divorce that doesn’t include that money would leave you with next to nothing. Tell me, I want to hear everyone’s side of the story.

Other articles you may like:

Is the law fair? Should compensation settlements form part of the divorce settlement?

The post Are divorce settlements fair after 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.

Guest post: Top tips for dating after receiving a traumatic brain injury

Michelle #jumbledbrain — Mon, 20 Apr 2020 11:28:41 +0000

Brandon Leuangpaseuth is a freelance copywriter from San Diego, CA. Brandon is an avid traveler, book enthusiast and loves animals. He loves exploring new places and going on long walks on the beach. You can connect with him on LinkedIn @ bleuangpaseuth.

Today he wants to share with you his personal experience of dating after receiving a traumatic brain injury, including his top tips for how to successfully settle down with the right person.

In 2015, I was hit by a car and I received a severe traumatic brain injury. A brain injury that left me without the ability to remember what I had done the day prior, constant fatigue, and the need to sleep more than usual. I have openly written and shared my journey to recovery since the incident on Jumbled Brain’s blog… From my struggles to graduating from college while dealing with the detrimental effects of my brain injury to struggling to work a full-time job (but finding a great career that worked with my TBI!) to coping with the everyday changes, my brain injury has had on my life.

Now, the next strenuous chapter I face while living with a brain injury is…dating. (Honestly, dating without a brain injury was already hard enough!) Dating with a brain injury opens up a slew of other obstacles that make it even more arduous. In this article, I want to spread how I learned to cope with the new obstacles my brain injury has had on my dating life.

The Importance of Communication

My doctor once told me a brain injury is only invisible to the outside world if I did not tell people about my head injury. What he meant by that other people will not know I suffer some negative effects from an unseen disability, unless I inform them of it. It can definitely be a tough conversation to have. At first, I struggled with telling people about my brain injury because I was ashamed and I wanted nothing more than to be normal. As time passed, I’ve come to terms with my head injury.

I made it a point to tell everyone who I dated after the car accident about my brain injury. I want to let my partner know what they were getting into before they started to date me. That I do have a lingering invisible disability that would impact the relationship. I’ve had some partners that said it was not a big deal until they had to deal with some of the issues I faced when dealing with a brain injury.

I have to let them know that I can be quite forgetful and I get horrific TBI exhaustions that make me take an enormous amount of naps throughout a day. Sometimes I can’t drive for long hours or stay out too late because my body would get too fatigued and I would need to sleep.

After I communicated with my partner, they would understand that I needed a nap whenever I got brain fog.

Being honest with my partner about some of the hurdles I face and that the effects it would have on the relationship have been extremely helpful. Telling my partner ahead of time some situations where the effects of my brain injury would come into play has helped my partner understand me better.

Dealing With the Dreaded Fatigue and Brain Fog

Fatigue is the absolute biggest issue I face. Hands down it is the worst part of my brain injury. My partner would get mad at me when I would fall asleep watching a movie in every theatre date we had or when I would say I could not stay out any longer because I was getting some serious brain fog. Of course, I want to spend time or being out late nights with my partner…but it is just harder with a brain injury. I would get pretty sad when I had to tell my partner that I can’t stay out late on some date nights because I was too tired.

The best solution for me was to plan ahead of time. I’m a freelance writer so I would write in the mornings and take my naps throughout the day if I had a big date that night or an outing. I would also pack some bottles of black teas to keep with me in case I needed to stay awake.

I would also make sure to use ride-sharing applications on some night outs because I know I’d be too exhausted to drive later.

I can’t stress it enough that preparation is key when you are dating with a brain injury.

Being Confident in Myself

Right after I received the brain injury, I had a lot of confidence issues. I used to pride myself on being a pretty academic and intelligent guy, but when I could not even remember what I did the day prior and I had difficulty forming cogent thoughts…I started to second guess that belief.

Thoughts of “who would date somebody with a TBI” started to pop into my head…

I felt like damaged goods.

–and my own thoughts and how I felt about myself flowed out into my dating life. People around me can sense my lack of confidence whenever I interacted with them.

If I didn’t even want to date myself, who would want to date me…

So, the first step was rebuilding some confidence in myself. I started to routinely hit the gym, cleaned up my diet and really worked on reframing how I thought about my brain injury. I realized that if someone didn’t completely accept me for who I was, a guy with a brain injury, why would I want to date that person? I had to learn how to be loved for who I was and accept all parts of me. If a girl was not interested in dating me because of my disability, then it was her loss! With this mindset, I started to be more confident with myself in my dating life.

Here’s to Dating With A Brain Injury

If you have a brain injury and you are struggling with dating, hang in there. Hopefully, my tips can make it a little bit easier to dating someone when you have a brain injury. Being honest with your partner, being prepared for dates and reframing how you think about your brain injury can go a long way.

I wish you the best of luck on your dating journey and I hope you stay safe!

Other articles you may like:

Have you tried dating after receiving a traumatic brain injury? Do you have any tips for other survivors?

The post Guest post: Top tips for dating after receiving a traumatic brain injury 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.

Dr Rob Tennant

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Dr Rob Tennant

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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.

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