Post-ABI – Return To Work (Part 2)

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. Last time out, I approached the subject of returning to work after suffering a brain injury. It was only when I reach the end of the post that I realized all the advice I had given was really regarding all of the preparation needed before actually applying for a job. So here I am returning with the second part of that blog post, hoping to give you some more concrete advice directly related to the job market for us people suffering from ABI’s.

Being Honest With Yourself (Again!)

This may seem like a fairly obvious point but the job you are applying for must have a fair contract for somebody with a brain injury. All of the issues we deal with must be taken into account when applying for a job. One of the obvious ones to use as an example would be working hours. The majority of brain injury patients are unlikely to be able to work full time hours the same as everybody else. I say this not to generalize but to speak from experience. Ever since I suffered my brain injury fatigue has been a problem for me on a daily basis. As such, any jobs that I now apply for are either part-time or flexi-time. This piece of advice relates strongly to the last post, in particular the section about being honest with yourself and honestly assessing your abilities.

Similarly, if you have difficulty (as I still do) with large crowds, then it is not advisable to get a job working behind the bar in a nightclub. Much of this is common sense really and I’m sure that you are all sensible enough to know this without me telling you but I just thought it was something that should be brought up. What I am basically saying, in short, is to play to your strengths when you apply for work.

Being Honest With Your Employer & Co-Workers

The issue of honesty is an important one in any working relationship, even more so when one member of the workforce is dealing with a disability. If you are starting a new job post-ABI, it is vital that you make your situation clear to both your employer and your co-workers. As brain injury patients, we must overcome many issues in life that most people do not have to deal with. It is unfortunate, in this day and age, that overcoming prejudice in the workplace is one of those issues. However, in my opinion, this can never be achieved without 100% honesty on your part. Building a foundation of trust and honesty will go a long way toward overcoming it.

It is also important to remember that being upfront with your colleagues will most likely benefit you in the long run. People you are working with need to be aware of all the potential risks involved for you while you are in the workplace. For example, as a long-term sufferer of epilepsy, it is vital that my co-workers are aware of my health situation; know what to do should I have a seizure, and hopefully make allowances for the things I may not be able to or should not do. In the past, I have had seizures in the workplace and without members of staff trained in first aid, the outcome may well have been far worse than it was. Also, without sounding preachy, it is worth noting that if you suffer from something such as epilepsy, there is almost an element of responsibility to inform those you work with. I do not know if you have ever seen seizure but they can be very frightening things to witness. It is only fair to prepare your colleagues for what may happen while you are at work. I realise this will not apply to everyone, however I do know that epilepsy is a common consequence of a brain injury and it is a suitable example for me to give.

Pre-Existing Relationships

This is one of the first pieces of advice I would give to any brain injury patients hoping to re-enter the job market. Do your best to utilize any pre-existing relationships you may have in terms of employment. If you are still in touch with a former employer and you’re on good terms with them, it may be worth giving them a ring. Refreshing this pre-existing relationship can have many positive outcomes in terms of how successful you are while at work.

Firstly, if you have already worked for that particular employer, they will already be aware of what you can bring to the workplace and of your value as an employee. Secondly, having a job where you are on good/first name terms with the boss can only be positive with regards to your employer providing flexibility in the workplace to accommodate your health situation. And finally, this may seem like a simple one, when returning to work after an ABI I would suggest returning to work in an environment and with people that you are familiar with so as not to over stimulate your brain (potential consequences of this overstimulation run from fatigue all the way up to panic attacks and seizures).

Entrepreneurship

Finally, we get to the final heading of entrepreneurship. I will only keep this brief; as I’m not sure I know enough about it (yet). For some people after a brain injury the stresses and rigors of full time employment are not possible. It is all simply too much for them. So an alternative option is to perhaps start your own business. Think of something that you love, that you’re passionate about and would enjoy doing each day and then try to think of a way to monetize that passion. The bonuses of this (in the idealist thought pattern) are that you can arrange your own working schedule, pick your workload for the day and be responsible for all of your own business decisions. In some ways enabling you to get out of the rush and hurry of the world that is being employed by someone else.

Try Every Option

Sometimes it is difficult not to feel a little hard done by when, as a brain injury patient, you consider what you have lost. What we need to keep telling ourselves is that we are every bit as valuable as any fully abled person. We are hard working, friendly, driven and we have ambitions and goals as well. Only a positive attitude and hard work will overcome the rubbish hand we were dealt. It does not seem right that we should not get to pursue a passion in the work place because of sheer rotten luck. So my advice would be to try everything that you can and to go into it with an open mind. An opportunity, no matter how small, can always lead to something bigger and better. After all, that’s a place all of us are trying to get to, somewhere bigger and better, am I right?

Thanks for reading again. Please, follow me here on WordPress if you like what I am writing or find it helpful. To get more info on blog updates, follow me on my Twitter page (@ABIblogger). Thanks again and be well!

 

 

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Socialisation & Engagement (Part 3) – Some Hard Truths

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. The key points that I wanted to illustrate in the last two posts have been to highlight the aspects of your life that are affected by an ABI: the physical and cognitive limitations as well as constantly having to be aware of your general health and well being (more so than most other people) means that in many ways you are limited in what you can do in terms of building a social life post ABI. I also hope that I made my opinions clear that much of these limitations can be really emphasised by a lack of understanding from the general populace regarding head injuries. A healthy social life is something that I found to be key to my recovery, but once again it is something that can be difficult to establish and it may require thinking outside the box in terms of what may be out there that is doable for an ABI patient.

A Limitation of Freedoms

You need to find a way to be able to enjoy yourself and some people can get this gratification from the aspects of health and well being such as exercise and diet and so forth. Many people also get a lot of fulfillment from their occupations, however there does come a point where you need to address the fact that because of some of the limitations the ABI has left you with, you may not be able to go back to work for a while or do the same kind of work that you did before. Finding and keeping work has been a big struggle for me which I have found incredibly frustrating as someone who was brought up in a family where having a job has been not just important it has been a necessity since I was sixteen. So I am going to talk about my experiences of how my life has changed in terms of some of the things I can no longer do have difficulty doing that I perhaps took for granted pre-ABI.

Struggles With Work

Let us start with a for instance. As I have said in past posts, a lot of socialization stems from people’s employment. People going for a drink after work; or there is a work 5 a-side football team, there are even romances that begin at work. Not to mention, depending on the type of work you do, socializing can be a large part of it. Take me for example – pre-ABI, I was a waiter. My entire job description revolved around socializing with people; making them feel welcome, engaging with them and making them feel comfortable. Pre-ABI, I had five years of experience in the service industry and I was good at my job. Having spoken to doctors, I have been told that the service industry is probably the worst industry I could work in, in terms of what my brain would be able to tolerate.

My neurologist said to me that the unpredictability, the chaos and the constantly having to be aware of my surroundings, that is required in the service industry would be too much for me. That the stressful nature of the industry did not work well with an injury like an ABI. To give an example of a similar problem, it would be similar to a man with a bad back getting a job as a removal man. However, post ABI, I was foolish enough to attempt to re-enter that industry.

My return to the service industry resulted in a spike in my epileptic seizures: seizures on the way to work, seizures while I was at work, and these are Tonic-Clonic seizures (the kind you see in movies where the character collapses without warning and starts frothing at the mouth) so a pretty frightening experience for people around me. Fortunately, my first boss was fairly understanding towards me and seemed to think I was a good employee and kept me on… until the café closed. So I relocated to another place, a bistro pub this time. After three months, I had a seizure while I was at work. A day later, I returned to tell them I would be in for my scheduled shift on the Monday. When I arrived I was informed that I no longer worked there.

Now, I cannot prove that the seizure was the reason for my termination but at the same time, I never really received what I consider to be a justifiable reason for that termination, and the timing seems a little coincidental. As I said, I cannot prove that this was my reason for termination, but I believe it was. In my opinion, it was down to some of the issues I still have as a result of my ABI . In particular, the effect the ABI has on my epilepsy and how retaining information as long term memory made it difficult for me to learn the way a new employer wants me to do things and the methods and routine they use. That’s the worrying thing. While we like to believe in equal opportunity, and that we, as victims of ABI, are no different from others, in the eyes of others, we are. That statement is particularly relevant when it comes to employers. If a large-scale company with a union employs you, you’re less likely to have those kinds of issues as there are procedures that need to be adhered to and processes that need to be gone through.

However, smaller businesses, which do not have those sorts of protection for their employees, are less likely to persist with you, attempt to understand your situation, and help you make the necessary adjustments any new job requires. The reason being, and I’m sorry if this sounds cold but I am merely talking from my own experiences, that for an employer, its an inconvenience knowing that an employee could collapse at any point and disrupt the working day, or having to persist with them regarding the “on the job” training. It is much easier to get somebody in who does not have a situation you need to accommodate for.

This has left me in a position where I now have no job, through no real fault of my own, all of my previous work experience in the service industry counts for nothing as I have no other industry experience on my CV (with the exception of a years labouring when I left school at sixteen). I have had to move back in with my mum and dad as an epileptic I cannot live alone due to the health risk but due to fatigue I still suffer from as result of an ABI I cannot work full time anyway. The point I am trying to get to is, that even with something as seemingly mundane as applying for a job, the consequences of my ABI (and the effect those consequences have on my epilepsy) play a huge part in what I can and can’t apply for. As such, any job I am lucky enough to get will then have a large effect on my work life and life at home; either in the way it adversely affects my epilepsy, or my ability to engage with people in the work environment.

A Social Life

When I look at this part of my life, it is only really over the last year that I have taken charge of my social life. The thing is, after my ABI, I was determined to desperately cling to the life I had prior to it. I don’t think that this is unusual but I have not met many other ABI patients my own age to talk about it with. As I have said before, upon my discharge from hospital, there was a general feeling amongst my family and friends that things would return to a state of normality in due time. However, it took me nearly four years to recognize that this was not the case. The ABI was going to be permanent.

As I say, I was twenty years old when I was released from hospital (my twentieth birthday happening in the rehabilitation wing of a Dorset hospital). This time is a crucial time for young people, a time where we do not want to be inhibited by the rules of parents and the thoughts of general society. It is a time where we want to be free. Those years in the early twenties, in my opinion, are the years where you find out who you are and what you really want to do. I believe they define your future.

For me, I was a step back. I had to rediscover who I was before I could truly discover and define who I wanted to be. One of the key things that defined me was a realization, a moment of clarity if you will. The key to moving forward for me was the phrase “Who cares what they think?” Because the truth of the matter is, when you go through difficult times you find out who your friends are, at least I certainly did. The people who you need to keep in your life rise to the occasion magnificently. These people make allowances for your difficulties, your problems, and accept the reason you can’t do certain things because they are sympathetic, sensible, beautiful people trying to empathize with your situation. The vast majority of them however, you will rarely see again because to them, you are nothing more than an inconvenience and trust me you are better off without them.

It took me until years after the ABI to realize that many of the “evening out” options with people seemed to revolve around alcohol, at that age they do anyway (I’m not sure if it’s purely an age thing or whether the place I was living and the drinking culture that was there also contributed).

Since the ABI, I have greatly reduced my alcohol intake, my desire to drink is lessened greatly due to the way it makes me feel for the next day or so (absolutely awful if you must know). Unfortunately, I am and most likely always will be, one of those people who wants all or nothing. I have an addictive personality. I have a fairly heavy smoking habit (as in daily, though this was the case pre-ABI). If I want a drink, I want a lot of drink, you know? Over the last year, I really started to realize what the consumption of alcohol did to me; it had a tendency to induce seizures a few days after a booze binge (I recently found out that the time alcohol is most likely to induce a seizure is when it is just leaving the body, approx. 48 hours after the binge has taken place), or even if I didn’t have a seizure, I would be fit for nothing for 48 hours anyway. Over the last year or so, I have (for the most part) given up alcohol entirely, but as a result of that, what was previously a full diary in terms of my social life, now has very few entries.

The key to a healthy social life, where you might want to join some friends for a drink at a pub, is to surround yourself with people that have tried to empathize and attempt to understand your situation for what it is and why you can’t do the things that everyone else can. Surrounding yourself with people who are aware of your situation and care for your well being (not just their night out). This will not only benefit you in terms of your health and well being but, while you may find yourself with fewer friends in terms of the number, they will be better friends who want what is best for you. The absence of that added peer pressure, which for young people especially, can heavily influence decision making most often for the worse (that is a particularly relevant point because post-ABI, our decision making ability is not good at the best of times).

Let me give you an example. After I was discharged I was told that I was not allowed to drink alcohol for an entire year. I live in a very quiet town with very little going on. Going out for (often, more than) a few pints in the evening was a large part of our social lives for my friends and me. Since the ABI, I made it something of a mission to greatly reduce/give up boozing. Having made that decision, I realised that I am still in regular contact with only one of those people on a regular basis. This is because the others have faded away as they realized I would no longer be the beer-swilling socialite who would go along with what the group wanted to do, that I was pre-ABI. They were unwilling to make the effort to understand and make allowances for my abstinence.

As I have tried to make clear, building a social life that is of benefit to you as a patient and finding appropriate activities and (as a long term goal) appropriate employment is both extremely important and extremely difficult. So, on the next few posts I am going to focus on dealing with doctors and trying to understand where they are coming from. Following on from that, finding charities and organisations that allow for and ensure a safe environment for people with ABI ‘s and Brain Injuries in general to be able to socialise and meet people with similar interests and ideas.

My blog is only early stages so I am still getting to grips with the medium. I think I am starting to get the hang of what people are after, so I hope you are all gaining something from it. I will try from now, not to merely repeat what I did in terms of a methodology, but try to address how those things make me feel, how/whether they affect me today and my subsequent conclusions (what I have tried to do over the last few posts). I hope you will follow me on Twitter, my handle is @ABIblogger, and that my posts are beneficial to you, whether patient or carer.

Socialisation & Engagement (Part 1)

My name is Tom, I am 26 years old and I am the survivor of an Acquired Brain Injury. So far, I have focussed heavily on the mentality and approach we took as a family throughout our never ending pilgrimage towards recovery from an Acquired Brain Injury. My intentions in the previous posts (“Rewiring The Brain”, and “Rewiring The Brain (Part 2)”) were to stress the importance of both giving the patient some time to assess themselves and ascertain where the damage has been done, and allowing them to realise for themselves what strengths and weaknesses they have. What I was hoping to stress, was the importance of the assessment of cognitive function, of thought patterns, the way that the brain works (or perhaps doesn’t work anymore), and identifying where problems occurr. The next few posts will focus on the importance our lifestyle; the things we consume, our sleep pattern, our social activities and conduct etc. and how social pressure and expectation can put pressure on patients that may adversely affect their recovery progress. 

Today, I’m going to examine the first of three topics that, once you have established what a patient is and isn’t capable of and the level of stimulus the patient can handle, will inevitably affect the way that a patient socialises. The first topic will be talking about the physical and cognitive limitations that are placed on us; the second, from a health and well being point of view and the importance of maintaining the discipline of a healthy lifestyle, finally, having taken into consideration the previous two factors, when (as I did) a patient may (or feel it necessary to) reassess what it is they like to do, what they don’t like to do, and what they are able to do for fun. Once again I feel that the aspect of socialization and engagement is particularly important, so I will be splitting the topic into three separate posts to give each one the focus it deserves.

(N.B. Within these two topics, social science will also have a contribution to make. Unfortunate as it is, the association’s people make with disabled people (I consider myself a disabled person, so please forgive me if I have offended anyone) are still extremely negative, and I would be surprised if, as a carer you do not see prejudice in some form or another towards the loved one who is suffering post-ABI. If, like me, you’re a patient reading this, don’t be surprised if when the drama dies down, you find out you have a lot fewer true friends than you thought, friends who really care about you that is. I do not say this to be unkind, I just do not want other people to be in the same situation I was when I finally came to my senses and was hurt and depressed about it).

Physical Limitations

There are plenty of potential physical ramifications and disabilities that can emerge from an Acquired Brain Injury. The brain controls all of our physical capabilities and any damage to a particular section of the brain can have devastating effects to our body. I count myself incredibly lucky, after the injury I had, that I am still able to walk around, hold a conversation, and do most of the things that I could do before.

The most affected part of my body/brain was actually in terms of my senses; smell, taste, hearing and sight, four of the five senses were drastically affected. I am permanently deaf in my left ear (the only thing I can hear is the permanent tinnitus I also acquired), I lost my sense of smell (only particularly strong smell such as vinegar, or cleansers and cleaners tend to get through. Though, I occasionally get lucky enough to smell my parents cooking which has become something of a treat on the occasions it gets through), for two or three years I was without a sense of taste, and finally, I spent about three years with a residual squint and severe diplopia in my left eye (diplopia meaning my left eye and its line of sight was not synchronized with the line of sight in my right eye creating an effect of severe double vision). As I say, I consider myself relatively lucky to escape with just this. Although, due to the extent of the injury to my inner ear, combined with the diplopia walking around and maintaining my balance was difficult for me. It was only really after a surgery to repair the diplopia in my left eye that the issue with my balance started to improve to any great extent. However, I still cannot stand on one leg for more than a matter of seconds.

For a long time, the issues with my sight and balance meant that when leaving the house I had to be accompanied by an adult, normally linking arms with them, to ensure that I didn’t fall over. I was also required to wear an eye patch to rectify my double vision. These things, as well as my surgery scars, contributed to me being singled out from the crowd of “normal” people that was the general public and was certainly affecting my confidence and self esteem.

Cognitive Limitations

The cognitive limitations I had, and still have to live with, were far more in abundance. As I have said previously, discussion with more than one or two people, for more than a small amount of time was difficult for me to handle. Crowded places caused problems (and still do to some extent), as did physical contact (personal space is something that I have issues with, both in terms of people being too close to me, as well as me invading other peoples space). In terms of thought processes, multi tasking, processing chaotic situations, judging propriety of what I am saying, and general decision-making are issues as well.

I realized this fairly recently, before you have a brain injury you have a tendency to take your brain, and the incredible things it does, for granted. The limitations that have now been placed on me make it extremely difficult for me to find and keep work, establish and maintain relationships, to follow through on things, my moods are erratic, and  I cannot seem to maintain a degree of calm in my life so that I do not suffer from stress and anxiety. None of these issues were present before my brain injury. Or perhaps, to be more accurate, those issues were all there, they were just kept at bay by a fully functioning brain with fully functioning pathways.

I will tell you to what extent these factors have affected my life at this current point in time, as it shows the difficulty people recovering from a brain injury have in attempting to regain some normality in their lives. After all, us ABI patients do not want to be defined entirely by our health situation; we are human beings too. We have the same desires, ambitions, needs (emotional and physical), and wants as any other person. Emotional fulfilment is something that has a lot to do with the kind of people you surround yourself with and engage with regularly.

However, the process of socializing with other people (Whom? Where? When? What?) is influenced by so many factors, but has a tendency to be influenced most heavily by the group of people that hold the position of majority within that social group. For example, whoever holds the numerical majority in terms of the gender, say if there are more boys than girls, the activity will most likely be something, at a location, more boy friendly than girl friendly, if you see what I mean. Most of the factors than contribute to deciding a social activity tend to be things such as gender, common interest, convenient location, all relevant issues that can be fairly easily compromised on. With something such as an Acquired Brain Injury, there are certain things that, maybe, can’t be compromised on.The task of mixing with people my own age was made all the more difficult by the impropriety of the social activities people would want to do that weren’t suitable for me: going out for a drink (I had been told by doctors that I shouldn’t drink for at least a year), playing football (contact sports were most definitely out, for me), it meant that the possibility of interacting with people of the same age, who had similar interests, was extremely limited.

I found that with something as out of left field, as intangible, as misunderstood, as a head injury, it is more convenient for the majority to cast aside the minority. So instead of finding activities me and my friends could all do, I generally stopped getting the invite or found myself choosing not to go. Finding young people, my age, with my interests, who wanted to accommodate my situation just so that they could spend time with me, were few and far between. Where much of socialising is done in large groups amongst young people, it made it almost impossible for me to go out and mix with my peers.

I implore you to stay with me on this subject over the next few posts here, because I really hope to be able to put the life of an ABI patient in stark contrast to the life of a “normal” (for lack of a more appropriate word, that is not to say that people with brain injuries are abnormal) person. I will hopefully be able to give people who engage regularly with an ABI patient some perspective as to what it is like to live that life. I also believe that those whose lives centre on an ABI patient will soon come to realise what I am talking about, if they haven’t already. Please come back again to read on Monday, or better yet follow my blog on WordPress and follow me on Twitter. My Twitter handle is @ABIblogger and get in touch. I more than welcome constructive criticism and am looking to try and get some good discussion going, hearing from other people and what they have experienced. Hope to hear from you soon!