A No Joke Medical Disclaimer

This isn't some legalistic thing, but I would greatly appreciate it if you took a moment to have a read:

While a good deal of thinking goes into the ideas and information on this site, their relevance must relate to recoverers' own personal health and qualified medical help. When it comes to brain injury, so much is case-dependent. There is never ever (!) any substitute for sound medical advice.

To get the maximum benefit from this site, please use it along with help from a qualified and empathetic therapist knowledgeable about brain injury recovery. Physicians and neurologists may also be a great help. You can't beat a good team approach!

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

Listening to the Niggle

In my post about cellphones, I mentioned one of my memory problems; remembering things at the right time. Yes, an external factor like cellphone or even just getting a reminder from a family member or friend can make things easier, but neither is fool-proof. Instead, I can kick down the door and find a more natural approach to my memory deficits.

I've come to realise that my TBI didn't so much take away my memory, it simply changed the way my memory works. Now, rather than my memory chiming in with a big wake-up call, "Oh, I must do this now!", it gives me what I call a niggle. A niggle is a small, seemingly trivial worry that I'm forgetting something. When I get one, the best response is to to stop and focus on what might be causing it. Unfortunately, that bit of the memory doesn't come instantly and sometimes requires real thought, but, if I stop to think, it's much more likely to come back than if I don't.

Like I said, the niggle's something new and it will take me time to get used to this new way my memory works. Right now, I'm too tempted to simply ignore the niggle as nothing and continue on my way, only to remember what it was trying to tell me much later on. I hope I can focus on the new way my brain works and quickly learn to listen to the niggle.

I have found one way to make it more difficult to ignore the niggle. As I'm focusing on what it is I need to remember, I think about where I'll be when that needs to happen. What will I be doing? What will I be seeing?

I do not mean to suggest that every TBI recoverer will have the niggle. Instead, I mean to say that a TBI will likely cause a brain to function in a new way. Much can be gained from thinking constructively about that new way, whatever it may be.

Cheers,
Mike

Blogging About My Progress

In my last post, I talked about having a computer in my rehab centre. That's certainly not the only way my sister and brother-in-law contributed to my recovery. Shortly after my accident, my sister set up a blog to update family and friends on my recovery. It's called, Mike 'Happy' Wilkinson's Progress Reports. Happy was my nickname during high school (mainly on account of my regular use of my rather large smile!).

In my post about my computer, I mentioned how many of my friends had already moved, or were in the process of leaving, from my home country, New Zealand, to live in other places. As well as my own friends, my parents had a very large group of people who wanted to be kept up to date with my progress. The blog became a way for my family to keep everyone up to speed, whilst not having to cope with endless numbers of toll calls on the phone.

I definitely was in no condition to blog myself early on and the blog was maintained by my family. Eventually, I recovered enough to add my own thoughts and did so starting with my first post in May 2005. I continued posting until my discharge from rehabilitation about seven months after my accident.

One person reading the blog had no effect on anyone else doing the same. Also the blog had a very unusual topic, and so it became extremely widely read by many. That raises the somewhat important issue of confidentiality, but I have been and, with this blog, still am careful not to give away any information that might be financially profitable to the unscrupulous.

After I'd recovered enough, the blog was a very useful way for finding out what happened while I was still in a coma. Even now, the blog continues to be a way to help me recall a difficult, emotionally trying time in my life. I guess, when she set it up, my sister never realised the factor the blog might become in my recovery, but I am now very pleased she did so.

Cheers,
Mike

The TBI Computer Geek

In my post about the contribution of my family, I mentioned how my sister and brother-in-law set me up with a computer while I was still in my rehabilitation centre. I should explain a little better about it.

After I'd recovered enough to do so, I became very desperate to be back online. I'm an economist and, since computers are so important for report writing in my work, I am very used to nearly always being online. As well as that when I had my accident, I was entering a time in my life when nearly all of my friends were leaving my home country, New Zealand, mainly to live and work in Europe . In this country, it's called an OE or overseas experience and this Wikipedia article explains it more. Being online was becoming my only way of keeping in close touch with a rapidly increasing number of my friends.

I'd been shifted from the intensive care ward in hospital to a brain injury rehabilitation centre. In New Zealand, the health industry is someway behind the information revolution and internet connections were unavailable to patients in the rehab centre. However, I was lucky enough to have, in my family, an extremely capable and helpful technology guru, my brother-in-law. He set me up with a mobile phone connection to the internet using my old computer.

As well as being useful for My Brain Trainer and writing for my recovery blog, the computer put me back in touch with all my friends across the world. It was a tremendous buzz to feel so much more plugged in with everyone, but don't take my word for it, here's the thoughts of my Mother, Lee: "Mike's computer allowed him to be proactive in his friendships again. No longer was he sitting around waiting for people to come to hospital to see him. He was back in control and we later realised just how important this was to his morale."

All this happened back in 2005 in little ol' New Zealand. Doing something similar should be a lot easier now, particularly so in larger, more populated areas. If your loved one has recovered enough for it (and not before!), I would encourage you to look in to getting him online, too.

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