The Importance Of Family

Here I am, back again. I suppose I wanted to apologise for the last few weeks where the posts I have written may have seemed a touch negative. I feel that I don’t need to defend myself so much as explain why I have highlighted the potential damage things such as Simplifying ABI Recovery and downplaying manifestations of the injury can be to the overall recovery process. If we search for Lessons from the outcomes of challenges an ABI patient takes on as opposed to trying to give the outcomes a definitive and often one-dimensional label (i.e. a success or a failure) then everyone can learn from the experience.

What My Family & I Have Learned

I have learned that the more we (as in my family and I) attempt to understand my injury the better we are for it. Having learnt more about me, my abilities, my limitations and my strengths and then tailoring a recovery path around those things, we believe we are making slow and steady progress. It takes a long time to learn about the issues that surround ABI and an equally long time to get used to and adapt your own thinking and behaviors to a person who, very often, has been significantly altered by their injury. It also takes years of expert knowledge from some of the smartest and most intelligent doctors to really get to know who we (the patient) are and what we are about from a purely objective point of view. So imagine how incredibly hard it must be for those who are not objective but subjective and have had to bear witness to that change of personality and abilities. What the last post have been about is emphasizing the role of educating ones self and learning from experience can be to making a path towards recovery an easier one for patient and carer alike.

What Can The Family Provide After An ABI

“There’s no vocabulary for love within a family, love that is lived in but not looked at, love within the light of which all else is seen, the love within which all other love finds speech. This love is silent.”

-T. S. Eliot

The family and the home environment after an ABI, as I have stressed in my last two posts, will have a dramatic effect on the patient’s attitude, confidence, mental state and all other aspects of a person that we do not see. Or perhaps we see them only in their actions and maybe only in mere flashes, in single moments (that final thought was a sentence that only just occurred to me, just this second).

From my experiences as an ABI patient, I was fortunate enough to be provided with a relaxed, quiet environment. I was allowed to take challenges on in my own time. I was given time to relax, sleep when I wanted to sleep, I was gently encouraged to do things if it seemed I was becoming to negative or was closing myself off and shutting myself away, but I was never put under any kind of pressure. I had my own room with things that would keep me entertained during the day in a house where there was a garden if I wanted to go outside. Finally and, perhaps most importantly, I had a mother and father who were always supportive, accommodating and flexible to my needs, willing to work with my strengths and around my weaknesses, and willing to fight for me in battles I could not hope to win individually.

All of these things combined allowed me to move forward with my life after an ABI and get to where I am today. We are not a rich family, a family with powerful influence or friends in high places; we are just a close one. What perhaps I didn’t realize at the time is how extremely fortunate I am to have the family that I do around me; The father who worked split shifts – six AM until twelve PM followed by seven PM until two AM – and a mother, sister and brother who would arrange their own work schedules as best they could to ensure I was not left alone for any prolonged period of time (not always possible but they did their best and would always come and visit me after they had finished their shifts). Because for every person like me who was fortunate in this way there are plenty more people, either OAP’s, people from broken families or just people that slipped between the cracks, that don’t have the kind of support that I did.

How Does ABI Fit In To Current UK Society?

The short answer is that it doesn’t and that we are not considered or represented and our injury is thought of in society, particularly in bureaucratic and institutional terms as the same as every other disability.

Now I will give you the long answer. What I have learned, especially since it now directly affects me on a day-to-day basis, is that in recent years things have changed in British society, and from my point of view for the worse, particularly in terms of our frontline services. Due to government policy and directives as well as huge budget cuts, Doctor’s are put under pressure to provide outcomes that look good statistically rather than ones that benefit the patient and their wellbeing in the long term. NHS budgets are being cut while doctors are being forced to do more hours for less money. Outpatient services attempt to shoehorn people in to programs that are not suitable in the hope of providing some kind of suitable statistical outcome while having no real resources to provide any long-term care. Most people are ineligible for most forms of welfare due to the process now being means tested and based upon a report written by someone that has met you for one hour to conduct an “assessment”. Finally, in the past six months I can think of two separate occasions where medical professionals, while I was in a vulnerable state, have taken advantage of my situation to placate the people at the top who have set their statistical targets.

Playing To Win

Now these issues have not been as much of a problem for me because of the support I have from my family. However, if you are not in the same situation, what do you do? What would have happened to these people, if they had found themselves in the same two situations I mentioned, who don’t have the advocacy and the support that I have had to fall back on? It’s nothing short of scandalous the way that the people with disabilities are being treated in this country at the moment, portrayed as lazy scroungers or fakers, what’s worse is that that poisonous mentality is seeping into the media and into general society.

It seems as though, at the moment, with the huge financial constraints imposed by the government, any good will that was previously the foundation of things such as the NHS and the welfare state (both are things we, as citizens of the UK, have been paying for since the mid-1940’s with our taxes by the way) have been obliterated. It has now become a charade, a game of sorts. They have set the rules and if you want to win you have to play but it is vital that we have our teammates beside us, playing just as hard, if not harder than you are to ensure that you pick up the win.

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Brain Injury Recovery – Independent Living

In my post the week before last, I moved on from asking Where Am I Now? am now regarding my brain injury https://lifeafterabraininjurydotorg.wordpress.com/2016/01/28/where-am-i-now/; asking questions like, what are the permanent physical consequences of my injury & how does my injury affect me both socially and domestically? What are my strengths & weaknesses? After I felt I had answered those questions in a sufficient manner, the next step was to highlight the goals that were most important to me. The intention to assess them and look at the potential difficulties I would likely encounter. https://lifeafterabraininjurydotorg.wordpress.com/2016/02/04/brain-injury-recovery-where-do-i-want-to-be/ Then I could think about how I would go about achieving them, the steps that needed to be taken, taking into account the answers to the first question I asked. Following on from last week and the goals I picked out as being most important to me, here is my view on my own situation regarding moving out and living independently.

Getting Out On Our Own

This is something that every adult, young or old, male or female, rich or poor, disabled or fully abled wants as they progress through life; independent living. As you get older and become an adult there are certain things that change in who we are. We develop social lives, a love life, particular interests and hobbies that are our own. We come to the conclusion that we want our own personal space; we do not need to be under the constant watchful eye of a parent. We can look after ourselves, perhaps in a nice, cheap, little one bedroom flat. With some tender love and care and some Ikea furniture, we could definitely make that place our own.

The Considerations & The Struggles

In the paragraph above, I painted a very romantic picture of what living independently is like. What I learned from my own experiences is that there are pretty severe reality checks in store. We hold the kind of romantic vision I described above in our heads. However, what comes with living independently is a series of heavy responsibilities that need to be taken seriously.

There are contracts to be signed, rent to be paid, direct debits to set up, bills to be paid to name just a few and finally, ensuring you are earning/receiving the money to ensure all of the payments can be handled. Also we must consider the fact we have to look after our new abode and we are also depending on ourselves for survival in terms of food, money and all the other necessities involved in life. We also must manage our conditions that have accompanied the ABI. We cannot be under any illusion that we will get to a point where these disabilities will go away completely. However, There may come a time with the right discipline, help and determination that we can get them under control. A position where we control our conditions as opposed to the conditions controlling us. To do that though means being strict in terms of taking the right medication at the right times.

Why I Do Not Live Independently

I have tried on three separate occasions with varying degrees of success to live independently. The main obstacle in this process over the past five years has been the ever-worsening extent of my epilepsy. Here are the ways I have tried to live independently

  • University was, to all extents a success. I achieved a 2:1 (BA) degree despite my ABI with a lot of support from the university and epileptic episodes were kept to a minimum.
  • After university, I went to live in London to pursue my dream of being a writer. Again, epileptic episodes were at a minimum but slightly higher than they were at university, which meant my dad having to come all the way to London once a month to check on how things were going with me.
  • After a year of living in London due to financial reasons as well as health reasons it was necessary to move back to Dorset. Upon my return, I found myself a flat and a job. It was at this point that things took a turn for the worse.

While I was living independently in Dorset, the number of seizures I was having escalated hugely. Being a larger than average young man (around 6,2 and 17.5 stone) I usually end up with a broken bone or a losing some teeth after a fit and living alone put me at huge risk if, for some reason, the fit I was having escalated and my health was put in more jeopardy. With the seizure’s becoming more and more regular and the potential risk to my health while I had one rising, it had become clear that living on my own just wasn’t practical or sensible at the time.

What Did I Learn From My Attempts?

What did I learn? Well, firstly that living alone and having your own space allows you to be who you truly are and it is wonderful to have that kind of freedom and independence. What we should all be aware of though, is what that truly means. Independence means you are doing it for yourself. For people in our type of situation where there could be a crisis or an emergency regarding many things; physical health, mental health, panic or anxiety attacks, it may be a good idea to ensure the place you have chosen to live is not to far away from people you trust who will make every effort to help you.

Secondly, I would say that moving out and taking care of a place of your own is far more complex just in terms of the technicalities and bureaucracy that are involved in making the whole thing official. Sorting out housing contracts, direct debits, council tax and ensuring that the place is right for you depending on your situation are complex issues that can be confusing for anyone, let alone someone who has suffered an ABI. This leads me to number three…

The third thing I learnt follows on directly from number two. I would advise anyone who has suffered an ABI to get someone reliable whom you trust to act as an advocate on your behalf. Or, if it is necessary, take advantage of the help the social services may be able to provide or it may even be a good idea to go and see an attorney who can help guide you through the process and help clear up any misunderstandings so you know exactly what it is you are signing up for. Just to clear up the bureaucracy that is in all those contracts. It is unfortunate, but there will be people out there who may try to take advantage of situations such as ours.

My last Piece Of Advice

Finally, My biggest piece of advice to anyone recovering from an ABI or a disability is to not rush the process. To take your recovery a step at a time and this is one of those steps that should only happen when everything is in place and everything is ready for it to happen. Particularly, only when you are healthy enough for it to happen. That is when you will have the most chance of success.

Post-ABI – Returning To Work (Part 1)

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. In my previous post I mentioned the potential positive effects returning to the “mainstream” could have for people who have suffered a brain injury. This post will look at how to approach returning to mainstream employment. Last time I spoke at length on the positive effects higher education had to me and what I hope was some helpful advice on choosing the right course and accessing the support you, as a disabled student, would be entitled to. This time I hope to do the same regarding a return to work.

How Will It Help?

Returning to work can seem like a daunting prospect when you have suffered an ABI like we have. You are coming to terms with a new sense of self; there are things that you cannot do any more (perhaps cognitively, physically or both), there are issues with regards to your physical and mental health (such as fatigue, anxiety and depression). Those are issues that we face everyday (to name just a few), but I believe that a return to work can help improve most of those issues. Working a steady job, supporting ourselves and increasing our independence, grows our confidence and sense of fulfillment. This in turn plays a massive part in contributing to a positive mentality where we do not feel defined by our injury or inferior to other employees.

Looking At Yourself & Being Honest

Nobody knows you better than you. That’s a fact. It is a fact I believe to be especially important post-ABI. After a certain amount of time, you will start to become more aware of what it is you may or may not be able to do anymore. You will start to see where it is you are having difficulties. Equally, it will allow you to see where you are still strong. You may not be able to see it yet if you are still coming off the back of the injury, but you do still have strengths and abilities that make you valuable. Taking notes of these strengths and weaknesses will be crucial in terms of when you are finally ready to return to work, in applying for a suitable job for you in the long-term.

Having a positive mindset and at the same time, having a firm acceptance of your disabilities and sense of who you are key when thinking of returning to work are massive contributory factors in terms of potential success. When it gets to a point of looking for jobs, it is much better to look at the job listings asking yourself “What can I do?” as opposed to looking for what you can’t do.

Again, Start Small

I realize that this has been something of a recurring theme in many of my posts but I am a firm believer in it. When returning to work it is certainly best not to jump in with both feet. Starting out small is key to this. I believe a good way to gauge your ability to work is through voluntary employment. Offer your services to a local charity shop, or work with the head injury charities available in your area (Headway UK offer local support groups for returning to employment and there are other disability employment organisations that can help you find appropriate voluntary work, follow the link to access their website –www.headway.org.uk) . The benefits of voluntary work are that it offers a flexible working schedule and environment. This flexibility will allow you to assess yourself while you are being challenged. Again, you can look at where you are perhaps stronger or weaker; try to think of strategies that help you cope with certain situation where you struggle and how to increase your involvement in situations where you are strong. If all is going well and you would like to test your strength a little more, you can ask for more hours or more shifts while at the same time, if you are finding that the work is too demanding, you will be able to reduce hours and shifts accordingly. The positives of this is that it allows you to assess your strengths and weaknesses in the working environment in a situation of less pressure and also, if you do well, get a nice reference off the back of it.

The Support Is Out There

There are many different types of support available for people who suffered a brain injury from many different sectors. There are specific rehabilitation services, such as some of the vocational rehabilitation services that offer courses to teach new skills to those adjusting to life post-ABI. Acquiring a new skill could be just the tonic you are looking for if you are, as I was and many others are, at something of a loss as to which route you should go down. There are many vocational services offered by local branches of the NHS and accessing them should be relatively simple through your specialist.

Other potential benefits that can be gained by accessing the services of the NHS are things like appointments with occupational therapists. Getting involved in those kind of services can really help you to focus in on what it is you want to do as well as bringing potential programmes that could benefit you to your attention. I believe that just because we are the victims of a brain injury we should not be stuck in a job we hate for the rest of our lives. We should be able to gain employment that we are enthusiastic about and that gives us fulfillment (P.S. In terms of accessing the kind of support I have mentioned above – occupational therapy and vocational rehabilitation – a good place to look is in the service directory under the resources tab, on the UK Acquired Brain Injury Forum, just follow the link to their website – http://ukabif.org.uk).

There are also the Disability Employment Advisors (DEA’s) at the local Jobcentre Plus who can help you to shift through the many job opportunities out there to find something suitable for you and your specific situation. The Jobcentre Plus also offers specific programmes for disabled people who are trying to go back to work as well as information on potential welfare eligibility. Many of the Jobcentre’s effectiveness and their ability to help you will be dependent on the amount of funding they receive. I would urge you to go into it with an open mind and explore all the options that they have available (PS. Follow the link to a useful Jobcentre Plus guide – http://www.jobcentreguide.org).

In Conclusion…

It is only now I have completed this post that I have realized there is so much more I can say on this subject. So I have decided to elaborate on this subject on Monday as I think there is a lot to be said regarding the ABI in the working environment, so this one has ended up being something of a two-parter. Thanks everyone for reading and I hope it was of benefit. To find out more about my blog follow me here on WordPress @ABIBlogger or follow me on Twitter @ABIblogger (yes the lower case ‘b’ is intentional). Thanks again and be well.