More Unsympathetic Reactions: Getting Ejected from a Bar!

I mentioned in the post, Unsympathetic Reactions to Brain Injury, getting stopped by a nightclub doorman as I entered his bar and asked how many drinks I had had. That first bar was in Melbourne, Australia, and it was during another recent trip to Australia that I had a similar experience; this one actually resulted in me being kicked out of the bar.

It was the end of a long day of touring near Alice Springs in Central Australia. I was relaxing with my tour group in a local bar. Even four years on from my TBI, the end of a long day normally means one thing: I'm fatigued!

During a trip to the toilet, I was unknowingly followed by one of the bar's doormen. He decided that my stumbling, fatigued motions were due to intoxication. After stopping me, he said, I'm going to have to ask you to leave.

Nightclub doormen are not people to muck around with! They're unlikely to listen if I try telling them of my brain injury. I decided it was best just to politely accept and ask if I can say goodbye to my tour group. That request was granted and then I was politely sent on my way.

Did I get annoyed about the incident? Well, it's wasn't good having my night ended for me, but I just did my best to accept it. The doorman was doing his job and meant no ill-feeling. The sheer fact I was fatigued shows me that it was time for bed, anyway.

Basically, the only sensible option I saw, and still see now, was to accept it and live/leave to fight another day!

Cheers,
Mike

As Good as It Gets

One recovery idea that I occasionally come across is the concern that, maybe, this is as good as it gets. This is a very understandable thing to worry about. Indeed, this is the very idea that a character with an obsessive-compulsive disorder played by Jack Nicohson battled against in a recent film of the same name. I find myself occasionally wondering about it, too.

A brain injury can cause all sorts of problems, problems that require such a different approach to things that used to be so easy, One can start to feel these problems are insurmountable; feel like there's no way "back to" the way you were before; there are no more improvements to be had. Basically, one can worry that this is as good as it gets!

I don't know about obsessive-compulsive disorder, but I do know a little of recovery from traumatic brain injury. While understandable, I think it a very dangerous thing to worry about. The brain is an immensely adaptable piece of equipment. Worrying that things won't get better almost flatly assumes the brain won't learn how to work around whatever problems it comes across. In my humble opinion, assuming that is almost as bad as ruling it out from ever happening. That is, if you want to learn to recover, start by believing that you are actually able to recover.

Yet, feeling this is as good as it gets is still very understandable; when I start thinking it, what do I do about it? Simple, I do my best to keep in mind specific areas of progress I have made, specific times when my brain has learnt about how to work around things. With that, I can convince myself that my brain can work around things. This is definitely not as good as it gets!

Cheers,
Mike

Escaping TBI Escapism

In the post, TBI Escapism, I set out why I think Mike's World Tour wasn't about about escaping my TBI. Yet I talked about how I could understand wanting to run away from it all. How can I understand it, but not have similar desires, myself?

I guess, as you may be picking up, a big chunk of it is the sort of person I am: forever positive and upbeat. That doesn't mean, though, that I entirely avoided having escapist thoughts. When they came on, I guess I was able to focus on what I still had: a reasonable amount of health (that is, at least my accident wasn't worse!), a close and loving family and, yes, something of a life to be had; a life just waiting for me to figure out how best to live it.

I know times can be tough and the mountain looks massive for recoverers to scale. I guess it's almost a given a recoverer will have times when they'll want to run away from it. Thinking about the amount I still had helped get me through times when that feeling came on. It helped me escape TBI escapism!

Cheers,
Mike

TBI Escapism

TBI Escapism: the desire to get away from one's brain injury, to escape its effects, to have a day when things are 'back to normal' - the way they were before the accident. I have written about the concept before in the post, Wanting to Leave Care. As I said in that post, the feeling is very understandable. Departing on a holiday might seem a way to get a break, to relax, to return and feel better placed to carry on the struggle that is recovery.

Unfortunately with brain injury, though, there ain't no where to hide. Your brain is something you take with you everywhere. There isn't any way you can leave it behind, even for just a few short days.

People might well read about Mike's World Tour and wonder, was it TBI escapism that motivated me to take it. I can assure the reader that it was not. Right from the word, go, I was very conscious of the effects of my brain injury on my travel. That is what made me take a month-long trip first just to see how I got on travelling with the effects of my brain injury. While I was away, of course, I was still recovering, still learning about my new brain worked, still trying to think of ways to make it work better. In that way, Mike's World Tour was very much part of my recovery.

I think there is one main trick for others to take away from this when thinking outside the box: never let go of the brain injury. Always be aware that your brain might not work the same anymore; alternative approaches might be required. But always believe that any TBI problem can be solved, or at least substantially reduced; always believe that you can and should be determined to recover.

Cheers,
Mike

P.S. I've written a bit more on this subject in the post, Escaping TBI Escapism.

More Phrases for Mike to Avoid: I Should/Need To/Must Do This

Yep, here's another post about words and expressions that show my (lack of) acceptance of my TBI. Hopefully, I'm showing the massive link between how we feel about something and how we talk about it. For a long time, when I talked about how something hadn't worked out, I would say, "I should have done this", "I need to do this" or "in the future, I must do this". You're probably recognising a pattern here now. These are not phrases of acceptance.

My family became a little concerned with the intense way I was occasionally talking. They commented about it to me. I stopped and thought for a while before realising I was using them because I still felt like an adult who thinks he knows something of the world. I felt old enough not to be making such simple mistakes like that: "Come on, man. Sort it out! You're better than that!"

Of course, I was completely failing to accept I'd had a TBI. You can almost hear me adding, "Brain injury? What brain injury? You mean like what Uncle Ted had?" :-)

So I'd been thinking of myself as an adult. But, in many ways, I was starting my new life again. I was more like a baby or, at best, a toddler! It was as if everything that I'd done before was gone. I was starting over from scratch. It was as if I was experiencing every new situation for the first time. Everything was a learning opportunity. When I thought that, I no longer had cause to say, "I should have done that!" Instead, it became more fitting to say, "I've learnt from this and I won't do the same thing again."

It's all about perspective!

Cheers,
Mike

My Starting Point

A comment on my post, TBI Recovery - Not About Restoring the Old Me, But Improving the Current Me, led me to think about yet another aspect of acceptance - what I use as my starting point when I talk about my recovery. Early on, many recoverers (and I definitely include myself here) compare themselves and their abilities to how they were before their accident. It is very easy for others to see how pointless such a comparison is, but, for the one making it, it can be remarkably difficult to break!

For TBI recovery, it is very common for the recoverer to have no recollection of either the accident or the time immediately following it. My accident must have been such a shock and I was in such a bad way for weeks following it, people often ask, would I really want to remember that time. The only reasonable answer would have to be a definite no!

There are also other reasons for strongly remembering the time before my accident. Chief among them is that I really used to enjoy that time. My accident brought it to an end, but I really want to get back to it!

There's one small problem with focusing on the time before, though: I had a TBI in between now and then. The jolly thing came very close to killing me and I've been incredibly lucky to pull through. I've came to feel a lot better about that - about where I've been - once I came to accept I'd had my TBI. Once I learnt to accept it, it's so much easier to see my starting point not as my pre-accident days, but as the day of the accident, which I ended near death, laid out in a hospital bed!

In terms of remembering better days, acceptance means I'm better able to think of what I enjoy about my current, post-accident life. Yes, it lacks some of the things of my old life, but it has other stuff the old life didn't. I can now accept I've had my TBI and focus on the stuff I enjoy of my new life.

Cheers,
Mike

Phrases for Mike to Avoid: Again and Back To

In the post, Mike's Path to the Third Level of Acceptance, I put parts of two phrases in bold: "when I start doing this again" and "once I get back to that". I did so because these have become words, even now - over three years since my accident - I need to work to avoid using. I try to avoid them because of what I'm learning about accepting my TBI. When I use 'again' or 'back to', I imply that, because I used to do it, I'm certain I'll once again do it.

Yet part of me accepting my TBI is accepting that I might never again do what I once did. So I might never again do what I did previously.

I'm never able to stop being careful to accept my TBI and not use these words. Most recently, I've been tempted to use them when I talk about my running and swimming pace. I'm relearning how to be a triathlete (I wrote a little about it here). As I restart training, my mind quickly turns to my pace and how it compares to my pre-accident pace.

Before my accident, I could run a kilometre (about 0.62 of a mile) in four minutes and swim it in 15 and I used to be able to do both kilometre after kilometre. Now, I'm recovering from a TBI and, despite an amount of training, I can only manage about 70-80% of that pace.

I think it's a technique thing more than a fitness thing; I can only maintain that pace for a single kilometre before it starts dropping away and I'm not much faster when I try and sprint over shorter distances. Since it's a technique thing, the cause is very likely my brain injury; the brain is unable to perform what's being asked of it. Deep down, I have to admit that that means the brain may never relearn proper technique.

It took awhile for me to accept that I might never reach my pre-accident pace for any sort of long distance race. Now, though, I do my best not to imply that I will definitely reach it. I use phrases like, "if I become able to run four minute ks once more".

This post isn't meant to invite sympathy. First of all, I am incredibly lucky to have survived my accident and be recovering as well as I am. Secondly, you can be certain I will fight tooth and nail to reach those paces and achieve my pre-accident goals. But I accept that I've had my brain injury and I might never reach them and I might never do what I once did.

Cheers,
Mike

TBI Recovery - Not About Restoring the Old Me, But Improving the Current Me

In The Hardest Thing of Mike's TBI Recovery? Acceptance!, I talked of an idea about the process of TBI recovery. For me, at least, TBI recovery can be better thought of not as a process of restoring the old me, but as one of improving the current me!

Seeing recovery as a process of restoration is common. My Mum talks about how, if you do something like break an arm, recovery is more or less what can be done now, compared to what was previously done. For arms and such forth, I agree, such an approach might be appropriate and very useful for motivation, for instance.

Mum then goes on to a very important point. Brain injury is quite different to a broken arm because a brain is so much more fundamental to who we are and what we do. That makes a view of recovery as restoration much less appropriate. Sure, you can help the brain repair itself and try to teach it to do what it used to do; that's like a process of restoration. But, once you've retaught it something, it's most likely the brain has learnt to do it in a slightly different way. Nothing's restored, things are merely improved.

So a restoration idea for TBI recovery seems inappropriate. Yet people still try to beat the square peg through the round whole and continue with it. Most won't even realise they're doing so, but there are some who, through work with brain injury, should know better. It's a pity that they don't stop and think what their view fully implies.

Cheers,
Mike

Wanting to Leave Care

Related to acceptance of a TBI, many TBI recoverers want to leave care as soon as possible. Their desperation means that rehab centres have to keep the doors locked at all times. The desire to leave comes from the recoverer linking the effects of their TBI with their environment. They often believe that everything will be alright as soon as they get home. While that belief is understandable, it would be difficult to find anything less true for nearly all recoverers.

To help with the many and varied problems caused by a TBI, there is quite simply no substitute for thorough, professional care for a TBI recoverer. Leaving this care early will not make anything better; instead it will almost certainly make it more difficult to recover well. During my recovery, I remember the desperate desire to leave, but, in my case, it was somewhat limited by the fact that I couldn't walk! I needed the physiotherapists' help to relearn how to even get through the doors, first. I quickly saw that care was the best place for me to begin to come to grips with my various problems (only one of which was not being able to walk!).

Other recoverers have greater difficult dealing with the desire to leave. One recoverer at my rehab centre even went as far as to have conversations with his lawyer about his ability to leave. I only heard about this from him and so do not know how his conversations were received. I can only hope that the lawyer knew enough to attempt to discourage attempts to leave care.

I've written this post mainly to help family and friends decide what is best for their recoverer. Please keep in mind that, almost by definition, a TBI will mean a recoverer is initially confused and not thinking properly about what's best for them. In time, thinking will most likely improve, but, early on, friends and families may need to offer firm ideas about how best to help recoverers.

Cheers,
Mike

Mike's Path to the Third Level of Acceptance

I described here three different levels of acceptance. Like I said, reaching the final level took me over a year from my accident and I needed the help of a kind friend of my father to get me there. Funnily enough, he isn't even a TBI recoverer; instead he has Chronic Fatigue Syndrome (CFS).

First, a little of his background. My father's friend worked with him at an investment bank. The young guys there were tough, regularly working more than 80 hours a week! All of a sudden, my father's friend started suffering from unexplained fatigue. It gradually worsened and eventually he had no choice but leave his job. Years later, he has now recovered sufficiently to hold down a normal, 40 hour a week job while keeping a young family. I can only guess at how frustrating it must have been to lose so much ability in such a frustrating way without any obvious cause.

I was lucky enough to speak with him about a year after my accident. I continued to suffer a number of significant effects from my TBI. When it came to recovery, though, I felt very much like the young-buck learning from the old-hand.

Part way through our conversation, he said, you need to learn to let go of who you were. This was a real bomb shell for me; I quickly saw that I hadn't been doing that all. I'd been very focused on redoing the things I'd done before my accident. I was making common use of the phrases, "when I start doing this again" and "once I get back to that". I hadn't been thinking at all about letting go of who I was and what I used to do.

Learning that sort of acceptance certainly doesn't mean you can't try once more to achieve the goals you earlier had. But it does allow you to feel better about your progress in reaching any goal by better better enabling you to keep things in perspective. I can only regard what my father's friend told me as fundamental to my recovery.

Cheers,
Mike

The Hardest Thing of Mike's TBI Recovery? Acceptance!

In my post about TBI recovery and attitude, The Right Stuff, I mentioned the concept of acceptance. Shortly after writing about it, I was asked what was the hardest thing in my recovery. On reflection, I decided acceptance would have to be it! It's so difficult because acceptance is needed on so many different levels.

The first level is obvious, yes, I've had a brain injury. For me and many others, this one was or is easy! How else do I explain why I'm in a hospital bed with all of these jolly tubes sticking out of me?

The second level is a bit harder! It's accepting that, yes, I've had a brain injury and I can no longer do what I used to. Want to do something as simple as get from my bed to my chair? Whoa! What was once so easy is suddenly a massive undertaking! Done properly (and safely!), it involves me and at least two other experienced people.

The third level is the trickiest! Yes, I've had a brain injury, I can't do what I used to and I may never relearn to do it! So much has to be relearnt after many TBIs, it can be very hard to accept that the process of relearning might never restore the person I once was.

If you've had a TBI and this is the first time you've thought about acceptance at this third level, please don't despair. Accepting that you might not relearn to do stuff certainly doesn't stop you from having a jolly good crack at relearning it, as I'm doing now. Please see TBI recovery as not about restoring the old you, but as improving the current you! If you stop and think, you might well come to like what your TBI and your TBI recovery has made you become. I will write more about this shortly.

This third level of acceptance only takes up two of the first five paragraphs of this post. When I said it was the trickiest level, though, I wasn't joking! Indeed, Claudia Osbourn devotes an entire book (Over My Head) to discussing her road to this level of acceptance. I've described a little more of my own road here.

Cheers,
Mike

The Right Stuff

After my posts, At Least It Wasn't Worse!, You Can! and The Game is Still Wide Open!, you might now be picking up what I see as most important for TBI recovery - attitude. Conversations with Jason, the author of this TBI and spinal core injury blog, have led me to focus here on my view about attitude. In Tom Wolfe's book, The Right Stuff, test pilots and astronauts need it to succeed and survive. To recover well from TBI, I think people also need "the Right Stuff" and I define it here as being about attitude.

Being stubborn is a big part of the Right Stuff! Never accept any constraint from your TBI. Always believe you can and will recover well! Constantly look for doors to kick down!

Acceptance is another key part. Accept that you've had your injury and now things may be different. Know that you cannot kick down every door and be comfortable coping with constraints whenever you do come across them. I've written more about the concept of acceptance in another post, The Hardest Thing of Mike's TBI Recovery? Acceptance!

Over the top of that stubbornness and acceptance, the Right Stuff is about being positive: always look on the bright side of things. Don't bother worrying about the past, focus on the future.

Don't worry if you don't think you have one or more of these things. I don't think I developed complete acceptance of my TBI until over a year after my accident. I've written more about how I did so here. In this post, I'll say that I don't think it's ever too late to find the Right Stuff.

Some recoverers have great trouble accepting their injuries. The Right Stuff is extremely difficult for them to find. I've written this post not for them, but for people still thinking about their approach to their TBI. If this is you, please think about having the Right Stuff. Work on being positive and accepting while being as stubborn as all hell!

Cheers,
Mike

We Are the Lucky Ones

Thoughts on Recovering from Cancer Survivor, Dave Colligan

It’s difficult to describe the emotions you go through when diagnosed with serious illness. For me, it was more relief than anything else, that I finally knew for sure what was wrong with me. At 23 years old, I was diagnosed with Hodgkin’s Lymphoma, a cancer of the lymph nodes. I had two tumours identified: The primary one, about the size of a closed fist, in my chest and the secondary one, about the size of a plum, in my neck. Hodgkin’s is not hereditary and nobody really knows what causes it.

I actually wasn’t that surprised to hear what my diagnosis was as I’d been sitting around in the hospital while all sorts of tests were conducted, reading the women’s magazines in the various waiting rooms – there’s never anything for the guys to read! I read an article about the Australian singer/actress Delta Goodrem, who also had Hodgkin’s, and I just knew.

The doctors told me that my chances of recovery were pretty good, around 75% in fact, so I almost felt like a fraud when talking to other cancer patients during my chemotherapy and radiotherapy sessions as they had typically been told that they had a much slimmer chance than me. The positive outlook that these people displayed under such difficult circumstances was inspiring to say the least

My friends and family reacted in very different ways to my diagnosis. Some people cried, some people were very matter-of-fact – I guess everyone has their own way of dealing with adversity and I tried to help people deal with it as best I could. For me, I just coped by trying to live as normally as possible, and encouraging people to treat me as normally as possible.

I’m usually a fairly active person, but cancer and cancer treatment really saps your energy levels so I passed the time when I had no energy by doing a bit of reading. Two of the books that I read, which will be no surprise to those affected by cancer, were Lance Armstrong’s books It’s Not About The Bike and Every Second Counts. Lance is a very inspiring person himself, but there was one line in particular that I liked which I think Lance attributed to one of the many cancer patients he became friends with:

“We are the lucky ones…”

When people ask me whether I ever think that I was unlucky to get cancer, I always reply that if I had my time again I’d still want to go through what I went through. This is pretty hard for a lot of people to understand, and maybe it takes a ‘life-changing’ event to really understand it, but I really do feel lucky to have had this experience. Sure, chemo’s not much fun, but being faced with the prospect of losing your life puts a lot of things into perspective and highlights what matters to you and what doesn’t. I know it’s a cliché – and a slogan - but life is short and (depending on what you believe) you only have one.

So I reckon it’s good to make the most of it.


Dave