Why We Shouldn’t Simplify ABI Recovery

This post is aimed more toward family members and those living in close contact with patients recovering from ABI’s and TBI’s. It links on quite nicely from the last post Only Lessons and was not a subject I had really thought of covering while I had been planning out my blog posts and yet here we are. Last week I spoke about the slightly less tangible aspects of brain injury recovery. These are areas that in some places, even after six and a half years when I think I have seen, felt and heard it all, still throw surprises my way. So after last week I thought very hard about what it was I had said to you and tried to add another carriage to that train of thought.

Something To Remember…

Unfortunately, much of this post has a “what not to do” kind of message. I know what some people reading this will be saying, and I completely agree with you, that “it is so hard to learn the best way to approach recovery and what to do when things become uncertain and when things don’t go right and its easy for him to sit here and type away telling people how to and how not to approach a type of recovery with so many variable factors”. If that is how this post comes across, I sincerely apologise but the truth is that, after discharge, families get very little outpatient support. It cannot be just my family and I that has seen and experienced the majority of outpatient services, for ABI patients and carers alike, and believe the majority of them to be a complete joke. So the reason I am writing this particular blog post is to try and help you bypass some of the lessons our family had to learn the hard way.

What Can Happen When We Don’t Properly Analyse The Outcomes Of Challenges During ABI Recovery?

If you happened to catch last weeks post and if you have been following me on Twitter, I spoke about not seeing and defining the outcomes of challenges as either success or failure, not to see things in that narrow, one dimensional frame of mind but try to look at the bigger picture of brain injury recovery particularly when a patient takes on a new challenge.

It is important to ask where were the strengths? Where were the weaknesses? What positives or negatives were there to take from the experience? Were there any external factors that may have affected the patient when they took on the challenge (distractions such as loud noises, crowded places, invasion of personal space)? The list of questions and factors that need to be considered when analysing the outcome of a challenge taken on by an ABI patient in recovery is huge. It is important that you think of it as huge as well because basically what happens when we don’t properly analyse and try to understand the outcomes of challenges faced by ABI patients, we think of it in simplistic terms and downgrade the severity of the condition, its long-term manifestations and consequences.

What Are The Sociological Outcomes Of This?

If we have simplified the consequences of something as complicated, devastating and life changing as a brain injury, it is inevitable that we will then simplify the outcomes of challenges an ABI patient faces down to naïve one-word definitions (as I mentioned in my previous post) such as “success” and “failure”, does it not follow the pattern that we will react in a simplistic way? It is likely, given preceding events, that reactions will be based off of emotions, or worse, based off of the abilities of non-disabled people (the reason I say that the latter is worse is due to the fact that none of us can keep our emotions in check 100% of the time). To react in a way where we compare outcomes to challenges based on the abilities of people with a disability to non-disabled people is discriminatory, plain and simple.

What Are The Emotional Outcomes Of This (For The Patient)?

To start off with, let me say that I am very fortunate to have the parents I have. Without them I would never have got through this period of my life where my world was turned upside down. They have never expected or asked for more than I could give. We have tried things and they have not gone to plan but never once was I blamed for any mishaps that have happened along the route of recovery. Any disagreements we have had or any time I have felt hard done by is when (as I mentioned earlier, emotions cannot always be kept in check).

If I may give an example, when I am suffering especially badly from fatigue my memory, speech and thought processing are particularly affected. It takes a long time for my thoughts to find the words I want, then for my brain to send them down to my mouth and for my mouth to sound out the words. My sentences become particularly disjointed and filled with lots of “err’s” and “umm’s” between words. When relaying a phone message during our recent house move, one of my parents lost their patience with me as my brain/speech was affecting my fatigue/anxiety and meant I was not delivering the message correctly. When this happened it made me feel extremely angry and a little hurt. It was only because it was one of my parents and the stressful context the disagreement occurred in that it didn’t affect me more deeply. It has happened on other occasions and when it first happened it was extremely hurtful.

 

What Can We Take From This?

“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

Albert Einstein

I believe that the above quote says it all. When an ABI patient takes on a challenge there will always be positives and negatives to be taken from the outcome (next week I will focus more on the positive approach methods to recovery). More importantly, there are lessons to be learned that will inform our recovery for the future. It is important to remember this and ensure that we do not allow ourselves to try and simplify a complex matter into something trivial and permit thoughts, led by emotions, confusion and a fear of change to rule our reactionary processes throughout recovery.

We, as people, are all different. The key to finding a successful route through the minefield that is ABI recovery is to be as flexible and open minded as possible and find ways to approach recovery using the tools to hand and using tools that suit the abilities, emotional state, personality and goals of the patient.

Thanks for reading. I hope you have found my post interesting or useful. Follow me here on WordPress and join the mailing list to receive the post via email every week. To stay up to date with my other goings on, follow me on Twitter (my handle is @ABIblogger) or on Instagram where my user name is abi_wordpress_massey.

 

 

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Only Lessons

Since the New Year, the majority of my posts have been focused on the life changes we have had to accept as people with a disability. The main message of those posts, Health, Independence, Employment and Taking Control Of Our Lives Back (a message I’m hoping I managed to get across accurately and clearly) was that we should not settle for less in terms of our expectations of life. The other thing I was trying to communicate was that once we get to a certain point, i.e. when we have acknowledged our disability for what it is, a disability that makes things harder for us in life, then we have reached a milestone. At this point we can really take off into different and, in some cases, slightly less tangible areas that really are about your own state of mind, the type of person you are and adopting a certain mentality regarding Acquired Brain Injury.

This post is predominantly going to be about positivity, negativity, how you see yourself and the way you judge certain situations and their outcomes (that’s what I meant by those slightly less tangible aspects of brain injury). Really, those thought processes are what can determine the degree of success that an ABI patient has in their recovery. After all, we are all individuals and we are all different and it is for that reason that I see this post as particularly important. I hope you will see what I mean by the end of it.

Failure

  • FAILURE (noun) – failing, non-performance, lack of success, an unsuccessful person or thing.

Failure is a horrible and ugly word. The English Dictionary defined this word with negativity etched into that definition (which can be seen above) in all of its meanings. Taken at face value, if we were to interpret meaning purely in the academic sense and how the dictionary defines it, there is no way in which this word can be used which has any positive connotations.

For you now, as a patient, carer, family member, get yourself into a state of mind where this word no longer exists. Erase it from your vocabulary if you are in any way involved with an ABI recovery. This ugly word’s use is one that should be carefully considered taking into account the dictionary definition I have provided above, when you are dealing with anyone, let alone someone who is going to be as emotionally sensitive as a person recovering from an ABI.

So what word do we use when the inevitable setbacks that will most certainly occur rear their ugly heads? Well, what we do is we think about things in context and we most certainly do not give the outcomes of a challenges a simple a one-word definition.

Engaging With Things & Testing Ourselves

After we suffer something as traumatic and life changing as an ABI, we cannot shut ourselves away from the world. We must be brave and throw caution to the wind in trying certain things and conquering new challenges. Of course this is, again, within context. I’m not saying we should try and climb Mount Kilimanjaro, but when opportunities and challenges that we see as manageable present themselves then we shouldn’t be afraid to try them. It is all about perception and how we scale the size of the task in front of us. Weigh up the potential positive outcomes against the potential negative outcomes in line with the situation of the patient. If you feel that the overall potential benefits outweigh the potential negatives, then give it a try (if you are a patient reading this, perhaps with the help and advice of an advocate or carer). Not only does this ensure that we are out, engaging with the world but it also allows us to test our strength; find out where we are weak and where we are strong and areas where we should be focussing in terms of trying to improve.

Secondly, one of the key things I have learnt over quite a long period of time after my ABI was that recovery progression (progression is the key word there, that is what we all want for ourselves and our loved ones, progression in life) was essentially an elongated process of trial and error. Trying different things, new things and even old things that seemed unfamiliar to me post-ABI. Trust me when I say this, sometimes I came back from outings on the verge of tears because I couldn’t handle the task I had tackled and I was tired, frustrated and angry. Sometimes I had mini emotional breakdowns in public because someone had barged into me and invaded my personal space or the amount of stimulation I was getting from being in a loud, crowded street was too much. Sometimes I wanted to give up. But I didn’t.

When my parents and I realized that certain situations and tasks were too much for me to handle, we tackled something smaller. If that didn’t work out we reduced the size of the task further still until we found something manageable. Even if the task to stimulate a patient is something as simple as going to a park with a parent or carer and feeding the ducks, it is a task that the patient can do, in a relaxed atmosphere that they can enjoy. It is then a case of, when the patient is ready, moving up to something slightly bigger, something more challenging and see how they get on with that. I would also add at this point, don’t progress too fast. Communicate regularly on whether they still enjoy whatever simple task has been chosen. Or, even wait for them to ask you for a change.

No Failure, Only Lessons

I guess what I am trying to say here is that there is a steep learning curve when it comes to recovery post-ABI for patients, parents and carers alike. You musn’t be afraid of trying new things and gradually challenging yourself more and more as the road to recovery goes on. When setbacks occur for a patient tackling a challenge, do not define the outcome of it in one-dimensional terms of success vs. failure. Try to see it as a lesson learned and know that, for now at least, that challenge is too much. Take a step back, look at something smaller. Or, you may have found an area where a patient is managing quite well, a huge positive that you can jot down when planning the progression of the recovery, you now know an area where he or she is capable, that you can build from. Either way, do not judge any experience as a success or a failure but as a lesson learned. Ny learning as we go we can build up a programme that will suit the abilities of the patient and hopefully slowly build strength in areas where he or she is struggling. Remember, never success or failure, only lessons.

I hope that this post has been helpful for you. If it has, follow my blog on WordPress and join the mailing list to get them sent direct to your inbox via email. For other information on who I am and what I am about, follow me on twitter. My handle is @ABIblogger. Thanks very much for reading and I hope you’ll be back to read more.

Acknowledging Disability

It took me a long time to finally accept the monumental change that had happened in my life. In my past posts on Independence, Health, Employment and Taking Back Control, while being focused on being able to live as an independent adult with our own lives have all had a common theme of acknowledging where our strengths and weaknesses lie. In essence coming to terms with our disabilities.

Coming to terms with having something like brain damage and accepting myself as a disabled person, was a really difficult thing for me to do. However, more than six and a half years have passed since the horrible night I suffered my brain trauma and I can confidently say now, without fear “I am a disabled person with brain damage.”

Now, I used the word “fear” there. I personally think that’s interesting when I consider my brain injury in the grand scheme of things, purely on a human level. I have to then ask and analyse myself (again!) what was it that I was afraid of?

A Short Series Of Questions

So here I have to ask questions to myself, what were the things I feared that made it so difficult for me to admit that I was disabled? Was I afraid that, by admitting to myself and to others that I was disabled, I would be excluding myself from the rest of society? Did I fear rejection, ridicule and prejudice in a society that increasingly seems to be turning a blind eye to the plight of those in need? Where, in this new sense of self that I was coming to terms with, would I fit in? Finally, had I subconsciously adopted an unknown, subconscious prejudice (not vindictive, violent or exploitative, more a feeling of discomfort when in their presence) against “the other”?

A Short Universal Answer

The answer to all of these questions is yes. I realise I may be making myself seem more unlikable to you in admitting that but I feel it is only fair for me to be truthful. I would be doing you a disservice if I made up some weak, halfhearted excuse as opposed to telling you the truth that my fears were based on basic human instincts; the need to fit in, the need to have a place and a role in everyday society, the need to be “normal”. Of course these are things that everybody wants really. They make for an easier life, a life you can float through without analysing, thinking for yourself, challenging or disrupting the natural order of things. What I see when I look at all of those previous questions and the answers I have just given is that the fear that stopped me accepting myself for who I am after my brain injury is one very basic, human fear…

The Fear Of Change

The fear of change is a very basic and, quite honestly, understandable fear. As human beings we like security; we like to know when our next paycheck is coming from, that there is food in the fridge and that we have a job to do when we get up in the morning. It is obvious that this gives us a feeling of safety and purpose each and every day. So when something occurs that has the potential to disrupt that harmony, something that could take away the things we rely on to get us through life feeling contented and secure, it is only natural that we are wary, cautious or afraid of that change.

So when we ourselves are fundamentally changed from the inside to out, the organ that controls our speech, our movement, that voice in our head that help us make decisions, decide what to say or do, the consequences to our cognitive abilities is damaged so that we are (I realise I’m speaking universally here but I’m only speaking from my own experience) an almost completely different person to who we were. That is a terrifying prospect for both patients and their families. That the person you are and that they love will be different from the one that they know, have known for years and that they love and cherish.

I don’t know about anyone else who may be reading this, but I feel as though my brain has been switched with someone else’s since my ABI. I am a totally different person now. Taking on the challenge of recovering from an acquired brain injury is taking a step into the unknown; as I said it feels as though my brain has been witched with someone else’s. It’s like a game of roulette; you never know what number the ball will land on or whose brain you will get.

Carrying on from that, what do we rely on more than our own brains, than ourselves? When someone has suffered a brain injury, not even the best experts and consultants are willing to predict the ramifications and consequences until the patient is fully awake. So for those on the outside, looking at a brain injury patient it’s the fear of the unknown. Not knowing how much of the person that they knew and love they will get back.

What Do We Do?

Fear, we all suffer from just in different ways. When I look at the questions I asked myself earlier (barring the prejudice one), they are all reasonable and similar questions one would ask themselves in other more conventional life changes. For example, if they were moving to a new place, quitting their job to start a new business or getting back into dating after a divorce. Those types of fears are deeply rooted within us; the fear of change and of the unknown.

It’s what I have come to learn. Life itself is an unknown thing, full of change. We can’t control everything all the time and we never know what is waiting for us right around the corner. Whether that is meeting the girl of your dreams in a café on your lunch break for example, or suffering a brain injury on a night out. Life is peaks and troughs. If we can accept that life is an unknown, that it has good and bad elements and if we can embrace the fear that comes with that and confront it head on, we can move forward accepting ourselves for who we are.

I can safely say that I have fully accepted that I am a disabled person. Confronting the fact that life will change and it will throw bad things at you has made me a stronger person. Now that I have suffered my brain injury and have seen what is truly the harsh side of everyday life, because of the strength and the determination it has given me to prove to everyone that disabled people are incredible, brave, valuable and talented, despite the disabilities I have now, I wouldn’t go back to the person I was before.

Brain Injury Recovery – Taking Back Control

I have only just realised it, but it is only now that I have written the previous four posts on Independence, healthEmployment as well as the idea of Gradual Gains as a method of obtaining these goals, that I am in a position to write this particular post. It all comes back to that idea of self-assessment regarding ABI recovery that I posted at the start of the New Year. We have to be constantly aware of our weaknesses and the issues we have after suffering something as life changing as an ABI. Not only that but we have to always be conscious to the potential challenges, struggles and, sorry to say this, prejudices we may come up against when it comes to addressing those difficult tasks.

Back To That Metaphor

I come back to the same metaphor, the idea of building a house, using that metaphor has allowed me to prioritize what I am hoping to achieve regarding my recovery and given me some kind of perspective in terms of what a successful life after ABI means, just how difficult it will be and how long it could take. To say it could take a long time is silly really, it is now six and a half years since my injury, I live at home with my mum and dad, I have no job and my situation regarding health such as epilepsy, anxiety and anger is still in bad shape. Since I have shared with you what my main goals are, I am now going to share with you the order in which I am going to prioritize and pursue them.

  1. Health Is My Foundation – I have realized as my struggle with an ABI continues that if your health, whether the state of health is an affliction that is a consequence of the injury or a pre-existing condition, a poor state of health always has the potential to pull you back. Take me for example; I am currently working hard to change my life style in a way that may positively affect my epilepsy and the frequency of my seizures. I have drastically reduced my caffeine intake, given up smoking, and started taking multi-vitamins and drinking pro-biotic drinks as well as undergoing a drastic change in types and amounts of medication. The main reason for these changes is due to the fact that so long as epilepsy still has the potential to disrupt my life at random and, often, inconvenient times, my chances of progress are poor. If I can conquer epilepsy, if I can control it and have it not control me, then it will provide me with a foundation I can build on to move forward with my life. The problem is that this can take time, so the best way to approach it is to concentrate fully on the health situation. Not to have any other distraction or targets in mind and gain as much control over your mind and body as you can.
  1. Employment & Financial Independence Are The Walls – When, and only when, I am sure that I am in control of any illnesses or conditions I have, I intend to start pursuing more ambitious goals regarding my writing ambitions. I have tried the paid work route, working for someone else and it has not worked mainly because of the restricted abilities I have as a result of my ABI. As such, I have decided to try and set up my own business as a freelance writer (which this blog is the start of really). As well as the idea of starting a business, other options are to find work within a private business, there is the option of seeking out businesses who profit from running programs by providing paid employment and empowering the disabled, or it could be that you will find fulfillment simply working voluntarily with charities. You will also find that there is government funded financial aid available. Once you have gained, hopefully paid employment, then you can start to dream about the idea of independence. Employment and hopefully, the wages you will be paid as a result will provide the walls that surround you and protect you; if you need something to help your situation you can buy it, if you wanted to obtain some kind of private medical care you could get it. It seems to me to be the next logical step in this recovery process.
  1. Full Independence Is The Roof – I think I can speak for many people who have suffered an ABI when I say that this is the overall goal. I think it would be naïve of me to suggest that we can live alone with no support ever again. However I do believe it is achievable for many of us to live a life where we have our own place of residence, we support ourselves or are as active as possible whether that is through paid employment or voluntary work.To say we can achieve these things alone would be, as I said, naïve, but with more than six years experience of living with an ABI, I know from experience that improvement and movement towards independence can happen. We can get the roof over our heads, the last part of our building project. It will be long, it will be difficult and it will be slow but we can move forwards and start to take control of our lives back, slowly but surely.
  2. Any Successes That Come After Are The Decorations

Taking Back Control

When it comes to all of the things I have posted about in previous weeks and prioritized above, as time progresses with an ABI,we come to the realization that it is not going to mend the same way a broken leg does. We will most likely be living with the consequences for the rest of our lives. So we start to question, if we are facing hardships (using my situation as an example) such as living at home, no job and not much of a social life, we start to question, “will things ever be better than this?”

The answer is that they can be. It is the changes we fear and the unknown challenges we are to face that frighten us most. But with the right attitude, a steady platform of health to build on, ensuring we know our limitations, we certainly can overcome those daunting tasks. Finally my most important point I think, is not trying to take on too much, too soon and to take on more than one thing at a time. When my situation gets me down, I try to think of it like the story of The Tortoise & The Hare, slow and steady wins the race!

 

 

Brain Injury Recovery – Employment

After detouring a little last week, going from specific subjects and speaking more of my method of recovery using a process of Gradual Gains, we’re back on topic this week. Don’t worry, I haven’t lost the plot (or have I?).

This is one of the more difficult issues to address after you have suffered something like a brain injury. There are so many factors that have to be taken into consideration, all of those things that came up when I was talking about “Where am I now?”. A few weeks ago and the factors I listed when I asked myself Where Do I want To Be?” All jobs require skills. Whether that is working behind the bar at a local pub and having the necessary people skills, specific technical knowledge to do a job in IT say, or whether it’s a trade job such as carpentry, all require skills and the ability to learn.

Where We Are At A Disadvantage

Now, here is the issue and it comes with the nature of brain injury and it cannot be helped. It tends to be that people who have suffered an ABI are affected in the way that they think, in their cognitive abilities, thus affecting our ability to learn new skills, commit things to memory and not to mention fight the terrible fatigue that comes with a brain injury. All of these factors direct consequences of our injuries put us at a disadvantage when it comes to applying for jobs, finding & keeping work.

In conjunction with the issues that we face every single day, we also have to face the fact that we are currently in a socio-economic situation where the job market is extremely competitive. This does mean that there are some employers who are not enthusiastic about the idea of hiring someone with the type of disability we have. What we suffer from is an invisible disability where, from the outside, apart from perhaps a few scars, we appear to be fine but people cannot possibly see or understand the problems we are forced to deal with each day, even at home let alone in the work place.

What To Consider When Thinking About Employment

There are many things that must be taken into account when it comes to jobs and the type of jobs you should apply for and whether that particular job is right for you.

  1. Know your limits! Do not over exert yourself. Consider the type of routine you have at home, what tires you out? Do you get migraines or seizures, if so; is there anything that triggers them? What skills are not as badly affected by your injury? Consider your working hours in terms of shifts. Does the job you’re applying for suit your strengths as opposed to incorporating your weaknesses?
  2. Consider whether money is essential in your current situation. Do you have rent and bills to pay? If NOT, if you are living at home and money is not as much of a problem (like me, I support myself mostly through the compensation I received after my injury) then perhaps voluntary work could be an option. Not only could you test your strength, test your limits in terms of what is manageable regarding hours and concerning the work environment, it can also be a huge confidence boost when you get out there and mix with different people; it gives you a purpose, after a brain injury I know that sometimes it can feel as though there is no purpose. If money is a necessity then there are benefits available from the state to help support employment or voluntary work if you are unable to work full-time and have no other source of income (however I would add, do not expect the government to do you any favours at this present moment in time in terms of financial support).
  3. The type of work environment you will be in if you get the job. For example, prior to my ABI almost all of my employment history had been in the service industry, either as a waiter or behind a bar. When I was ready to return to work I went back to those types of jobs. Now it turns out that, according to my neurological consultant, this is the worst, most stressful environment someone with an ABI and epilepsy could possibly work in. So it is always worth talking to a consultant or doctor prior to applying for a job or accepting a job offer.
  4. There are some larger companies that receive government grants for catering employment programs specifically for the disabled. So it is worth looking around online for this kind of employment, schemes such as these stands to benefit both parties.

What We Don’t Have To Stand For!

We do have to acknowledge that we are at a disadvantage when it comes to seeking employment. As I have mentioned, the consequences of our injury have left us less able than other people when it comes to certain things involving cognitive or physical challenges or our social skills may have been affected. I would also guess that most of the people who are reading this that have suffered an ABI suffer from fatigue in a big way. Rest periods being essential to us in terms of managing what life throws at us throughout the day.

We have to accept the limitations that have been forced on us when it comes to looking for work and take them into account when looking at job descriptions and the work environment we will be in. There are certain things we do not have to stand for though, mainly, prejudice in the work place. We should be considered just as capable and be just as valued as employees if we are given the opportunity. Here are a few things that you may want to consider doing when taking on a job. The following list is more of a guide to protecting yourself and your position while you are employed.

  1. Ensure that when you take on a job and the terms and conditions have been agreed, that you sign a contract and make sure your employer signs it as well. Please make sure that you read the contract carefully, with an advocate if necessary, to make sure that you fully understand what is going to be required of you. The contract will explain things such as codes of conduct, responsibilities, working hours, benefits, holiday and so on. These being written down will give neither you nor your employer anywhere to hide should there be a legal dispute later down the line. Finally, with the contract, ensure that you have a copy of it yourself to take home.
  2. Ensure that you are receiving at least the national minimum wage for what you are doing. You do not deserve to be paid less than anyone else, for the same job, because you suffer from a disability!
  3. When you have signed the contract for your employment, I would advise you, straight away, to join the trade union for whatever industry it is that you are working in. For a minimal fee (a few pounds a month) you can get legal advice, protection and representation should there be a dispute between you, another employee or your employer in the work place. The trade union also makes disability discrimination a key focus in their aims and targets. It is good to have them on your side rather than having to hire a lawyer at your own expense, which, for many of us is not possible for financial reasons.
  4. If you are dismissed from a job, in your opinion unfairly or that your disabilities contributed to the decision, ask for a letter of dismissal written and signed by your employer, listing the reasons for your dismissal. The next step is to then compare the letter to the contract you signed and see if there are valid reasons for dismissal, again with an advocate if necessary. If you both agree there are not, then contact your trade union.

The Key To Success In the Working World With An ABI…

I wish I could provide a magic remedy that would guarantee success for all of us. Unfortunately though, I cannot. The best advice I can give you is that you need to be ready to acknowledge the disabilities and issues we have as a result of our ABI’s and instead of resisting them, incorporate them into the job search itself, apply for positions where the limitations you have are not going to be as much of an issue.

I would also suggest opening our minds up a little. Even though it does not pay, voluntary work can do wonders for confidence and social skills. If they are issues you are struggling with, then a period of voluntary work could be hugely beneficial. If you find that it has helped you improve certain aspects of abilities that you fought with previously, it can really go a long way to improving your chances of getting a paid job. After all, is that not something we all want? Voluntary work shows a positive work ethic, a positive attitude and capability. All of those factors will go a long way towards achieving achieving our goals and gaining the financial independence we all so desperately want.