A New Blog to Discuss My Recovery

I've now set up a new blog up here. It's called, How to Recover: A Comeback from Severe Traumatic Brain Injury.

I've written it to discuss my recovery and the things I've learnt during it. It's primarily for other head injury victims and their families. But I hope that it will also be useful for people recovering from many other diseases and injuries.

I hope you find it helpful.

Cheers,
Mike

Tribute and Update

Two (and a half) posts in one – a big collective tribute and an update on Mike for those who are worried that no news is bad news. (Really the no news is because Mike is closing down the blog, because he is on email again.)

The tribute

Lee and I have been meaning for some time to express our gratitude for the uncounted ways we have been helped since Michael's accident. Happily, it is unusual to be on the receiving end of a torrent of support. It is a humbling but rewarding experience. We have learnt how important that support is and how multi-faceted it can be.

We all find ourselves in situations where we want to help but find it hard to know what we can do. This is certainly true of the trauma of having someone in a coma in intensive care; really it is a waiting game. With severe brain injury it is a much longer waiting game.

Yet look at the following, inevitably incomplete, list of the ways people have helped us all since Mike's accident.

· very generous offers of accommodation in Auckland, for as long as we needed it;
· people who provided meals to save us from having to think about organising ourselves;
· help with transport; including what was virtually a taxi service to and from the airport;
· off-street parking near the hospital in the driveway of someone's boss's house;
· a continual supply of all sorts of provisions for the mass of supporters in the waiting room;
· family who ditched everything to be there for us, especially Tracy and Andrew who quit their OE in England and moved back to NZ to help us;
· the overwhelming support and kindness of all the visitors to the hospitals – Mike's business colleagues, Ironman colleagues, all our friends and family;
· the idea of starting a daily diary by Mike's bedside for making notes on his condition and progress for the benefit of (1) the professional staff, (2) our own morale as we recorded his progress, and (3) so that he could read it in later months to 'fill in the blanks";
· the idea of starting a collage of photographs on his hospital ward wall to help jog his long-term memory – when (if) that became an issue;
· those who added to it with Ironman race numbers, medals, postcards, posters and even a Japanese flag, marking completion of a Japanese marathon;
· the nurses who explained and explained, gave us a lecture about the need to pace ourselves rather than indulge in 'all night vigils' and even gave us hugs!;
· knowledgeable friends and contacts who helped us navigate the hospital system, intensive care and the eerie world of brain injury;
· people who provided an amazing range of ideas and gadgets to stimulate Mike's brain;
· ideas about IT input that enabled us to set up this blog page and later get Mike's computer 'on-line' at Cavit at a low cost;
· the great comfort and strength provided by quiet empathy – those who have the gift of "just being there' and resist the impulse to fuss to help;.
· the zest of youth, Mike's friends could evoke a response from him and lift everyone's morale, including that of the young nurses;
· morale-boosting stories about, and contacts with, people who had pulled through similar experiences successfully;
· motivational stories about great achievers;
· friends and colleagues in Wellington who kept our businesses and family affairs going; and
· the strength and positivity from everyone, always backing the positive option, even at the worst news. Its the only attitude to take, but its easier said than done. (One point of comfort here is the realisation after a day or two of observing an intensive care ward ,that death is not necessarily the worst option.)

Lee tells me that I will bore any reader with a longer list, so please forgive me for not mentioning a thousand and one kindnesses, flowers, gifts, and heartfelt thoughts and offers of assistance pored into emails, letters, cards and voicemails. Thank you all.

Tribute to people more than institutions

Some people who are aware of my views about our hospitals being 'on the wrong side of the Berlin wall' and about the problems with our monopoly ACC system have asked me what my thoughts are now in the light of this experience. Here are some brief observations:

· the medical care Mike received saved his life several times over. This is humbling and we will neve forget it;
· the quality of the nursing in intensive care was awesome, as was the level of responsibility. It was great how they dealt with traumatised relatives too;
· the rehab care Mike has received at Cavit has fully justified its high reputation and the hopes of its founder, It really is a fine example of interdisciplinary cooperation. On arrival Mike was soon in a life and death situation and we will also never forget the professionalism and commitment that assessed the situation and rectified it;
· ACC has performed in our case every bit as well as Woodhouse and his supporters dreamed it would. It is currently focused on rehabilitation and return to work and this aligns with Michael's objectives and priorities 100 percent. From our perspective the interface between ACC (the insurer) and Cavit (the provider) is seamless;
· the inequitable gap between state cover for accident and sickness is a matter of every day experience in these situations; it is caused by the utopian approach to accident compensation;
· hospitals are indeed dangerous places (I think Ivan Illich once reported that they are as dangerous as a construction site) and we had a small number of unnerving experiences. Transitions are particularly dangerous, be it a change in shift or a transfer from one unit to another;
· fundamentally incoherent politicised, monopoly systems perform as well as they do because good people have limited options and enough of them hang in and make them perform despite the problems of pay, working conditions, bureaucracy, lack of control and intractable 'quality differences'. (For example, don't bother asking Cavit when construction will start on their new building.)

In a sentence I am very grateful to a lot of people, but I wish the system was better for them.

Brief update on Mike

Michael is making good progress, albeit not fast enough for his taste.

Three days a week a typical day is (1) healthy breakfast, (2) travel to Cavit for physio, (3) lunch (4) rest, visits from friends, hours on the computer, and perhaps a walk or Sudoku (5) dinner, chat, more computer, bed.

The other two weekdays there will be more walks and likely a swim at the Freyburg pool (currently 60 metres x 5) plus aqua jogging. He is cooking family dinners too.

In the weekends more friends, more coffee, overnight at the beach house, some TV, walk on the beach – and last Sunday a big PB – Mike's first bike ride along the beach for about 300 metres x 2, with Lee and I glued to each side of the bike. The great thing here is that his balance looks like its going to be OK for cycling again.

Walking, Mike is walking indoors now without his walking stick and looking steadier all the time. Carrying a full mug of coffee is still a bit too dicey, but he is getting there. Out of doors he still takes a walking stick. He is still a bit wobbly for jogging. I tried him on jogging on the spot (thought he was less likely to trip over himself and fall), but he did not seem to have neutral gear, only slow forward.

Swimming, Mike's arm action looks as professional as before, but his legs are a bit wonky. Overall he is back down to his Dad's speed, or slower. It won't be long.

Fatigue management is the problem we anticipated. He has been red-carded twice by Cavit's physio in recent weeks for being too exhausted on arrival. The first occasion was caused by too much physical exercise the day before. The second was caused by his attending a seminar at his work for 4-5 hours. So it is frustrating for him. One message here is the trade-off between getting physically fit again and returning to work. Both are needed, but each creates fatigue that can set him back for days. Fatigue measurement is the problem, no doubt someone will solve it one day.

Discharged!

Yesterday (Friday 9th September), a bit under seven months since the accident, I was discharged from Cavit. Although I will still have to go in for physiotherapy as an outpatient, my discharge was a nice milestone to achieve.

I will probably go out with my family over the next few days to celebrate the discharge. The change of scene will be nice but the battle won’t end, though. I’ll still have to do my best in my recovery from here on in.

The next step in my recovery is the process of getting back to work and contributing to the economy again rather than being so lazy. First though, I get to live off the fatted calf at Mum and Dad's and do nothing while I work out what deficits I have and what strategies I can use for them for about six weeks.

It's a bit hard for me to remember, though it is probably easier for others and I have received reminders from people, what I was like and how much help I needed and how far I’ve come. The days when I couldn’t talk or get around like I can now seem like ages ago, though. Like another lifetime.

My recovery is possibly a bit weird for permanent residents at Cavit. They see a guy come in who is initially worse than them, slowly improves and then is eventually discharged while they’re still there. They’re good guys, though, and I’ll do my best to stay in touch.

This will be my last post on the blog although my parents might well put a final post on. The blog has been a fantastic way of letting people know how things are going. Before the accident I think I knew what a blog was, but not how useful they could be. I offer my thanks to my sister whose idea it was. Without it my family and I would have had to repeat ourselves a hell of a lot more.

My final post seems like a good time to start another round of more complete thanks yous. My thanks go to my immediate and extended families. This journey would have been a lot harder without your support. My thanks also go to all the medical staff involved with my recovery. The guidance that you were able to provide was awesome. Thanks for keeping me alive even though I did my best to check out there a couple of times. It’s fortunate that I can say I think that checking out was something I could have been better at it. My thanks also go to my co-accidentee, Ben Schurr. That must have been a very tough call to make to my Dad telling my parents about the accident. It is a credit to you that you coped with everything and still completed a very good Ironman two weeks later.

I have heard about people who face some sort of ostracisation after accidents similar to mine. My post card covered wall at Cavit would have attested to the fact that that hasn’t been a problem for me. The support from everyone, including from people all over the world, has been amazing.

I understand quite a few people read this blog who haven’t even met me. If you’re one of those people I hope you didn’t find my musings too weird. I also hope to meet you all at some stage. To everyone else I hope to meet you again sometime in the not too distant future.

Cheers for keeping track of me,
Mike

Talk the Talk, Walk the Walk

Since the last two posts were very philosophical, I thought we had better talk about something more normal in this post. The last 7 days involved the passing of a few walking milestones. Over last weekend, I had a go at walking down and up the path behind Parliament, using my stick, that I will use to get to work. I got a bit puffed going up it, but what was physiologically more difficult was getting down it. I had trouble regulating my speed and had to come to a complete stop pretty regularly to make sure I didn't go too fast. Apparently, that is due to difficulties for the quads in paying out properly.

On Tuesday, I walked, with my stick, to the Epuni shops, which are a bit under a km from the hospital, with my physio, Sue. I got about 200m back when my core muscles gave up and my hips started moving in odd directions. It is a bit of a strange thing when your core muscles get tired. It's like you know how your muscles should move to allow you to stay balanced, but even concentrating on making them move that way doesn't fix your difficulties. Fortunately, Sue was pushing my wheelchair so I was able to use that.

On Thurday, I walked, again using the stick, down to Janus Café, the local café and the reason that David Haines lost his bet about cafes in the Hutt not having couches. Finally, on Friday, I walked to within about 100m of the main hospital café, which also has couches, without using my stick. Again, my core muscles gave up with that short distance left and I had to use my stick, which my speech and language therapist was carrying. I might be able to talk the talk ok, but I can only walk the walk for so long.

My muscle fatigue underlines the fact that there will not be a day when I suddenly can walk and run normally. Everything will have to be fought for and earnt. It is only comparatively recently, say over the last few months, that this has become apparent to me, even though it is probably exceedingly obvious to most people. We'd like to recover immediately, but good things take time, I guess.

Cheers,
Mike

Am I Going Bonkers?

This post like last week's post is about my thinking rather than any particular event, but some news first. A friend sent me a quote after last week's post that I liked so much I decided to put it on the blog. It is from former Israeli prime minister, Golda Meir, who said "Don't be humble. You're not that great."

My second bit of news is that during the week my physio said it was ok for me to get around places with predictable terrain like Cavit without my stick. She had a good look at my walk before she said that. One of my problems that will, hopefully, pass with time is that, occasionally, I try and transfer my weight on to the foot in the air before it is on the ground. That causes the foot to come down too early. My physio thinks that I should stop doing that in time, but, in the mean time, the stick should make me think about it more and be more useful when the terrain isn't flat or predictable.

The main reason for this post and the reason for the strange title is to tell you about what I am thinking what life will be like post-discharge. I have managed to avoid the common head injury patient desire to get back home earlier than is sensible. However, I don't seem to have avoided the common head injury patient belief that help won't be needed after discharge. I do accept that I will need some physiotherapy after I'm discharged, but it's sort of hard to ignore the issue when you have trouble walking. I don't, however, believe that I will need much more therapy like occupational therapy.

The issue has arisen recently in a meeting between me, my Mum, the clinical leader and the occupational therapist who is most likely to give me help (if I need it :-) after discharge. It has also been an issue in thinking about going away for a trip post-discharge.

This belief creates an interesting situation for me because I am aware that it is so common for head injury patients to believe what they believe despite the common need for help post-discharge. I spend a bit of time wondering if my thinking actually is irrational and if maybe I'm going bonkers.

Still, I might be right (hopefully) and my physio says the difference with me is that I'm willing to listen to what people have to say, but this doesn't stop me wondering if I might be thinking irrationally. How do you ever know if you're going crazy, I guess?

Cheers,
Mike

My 'Miraculous' Recovery

This post is more about my thinking rather than any particular event. I mentioned what I thought about my 'miraculous' recovery and how it didn't feel miraculous a few posts ago in regard to writing a book about my experiences but I have been doing some more thinking about it this week so you have to put up with a more complete post about it.

Nearly everyone I meet, if I know them, wants to tell me how amazing or miraculous (or some other similar superlative) my recovery is. It doesn't really matter but I don't like talking about it because generally I can think of better things to talk about. The main thing, however, is that I don't like talking about it because it feels immodest because it implies that my efforts are amazing or miraculous when it's probably all a matter of luck or something else outside of my control.

This probably seems like a funny thing to think about, but people bring it up so often that if you are at all uncomfortable about it you are forced to deal with it.

My parents point out that I can't remember how bad I was when I was in hospital and that it probably seems amazing or miraculous to those who can. While this might be true (I have remembered some more pre-accident stuff but early April is still my earliest memory post-accident) it doesn't change the fact that I feel slightly uncomfortable about it.

My Dad was telling a close family friend and a former chemistry buddy of his about things shortly after my accident and they hoped that the "variance would be my friend." By that, they mean that my recovery would, hopefully, be above average. Indeed, it seems the variance has been my friend and there is lots to remind me of how easily things could have been so much worse. Again though, I feel uncomfortable that my recovery could be attributed to much more than good luck or some other outside force.

My thinking this week was based around what to say when people start talking about it. I discussed the issue with family, Cavit staff and a few unfortunate close friends. The best idea came from my physio, Sue, who said that if people try and tell me my recovery is miraculous I should change the subject by saying that miracles are for French peasants.

It seems inevitable that people are going to say whatever comes to mind though, so I thought the problem is probably with my definition of immodesty rather than with other people. Perhaps, it's not immodest to accept but not endorse such comments. So, now I'm going to accept such comments but offer none of my own views on them.

This probably seems like an awfully long thought process to arrive at a simple conclusion, but that's the price of doing my best to keep my modesty, I guess.

Cheers,
Mike

Painting the Town Red

On Tuesday (9th August) night, I went to the Business Roundtable's 2005 Sir Ron Trotter lecture. The event, held at Te Papa, was very flash and it was the first time I had worn a suit since the accident. I was using my walking stick to get around and, apparently, if I twirled it and put on a top hat I would have looked something like Fred Astaire.

The evening passed pretty much ok except near the start I had a drink of orange juice in my hand when someone lightly bumped in to me. Before the accident it wouldn't have mattered, but this time I managed to spill quite a bit of orange juice. Not the safest pair of hands now, I guess.

The lecture itself was good. It was given by a US academic economist, Tyler Cowen, and was on globalisation and culture. I found I needed to make more of a conscious effort to concentrate during some parts of the speech. For instance, I found that I couldn't remember what the question was that was asked as Prof. Cowen answered it.

My concentration also cropped up as an issue at other times. At one stage, a man on one side of me was talking to a man seated two away on the other side of me. While the man seated two away from me was speaking I thought there was no way the other bloke could have heard, given he was further away than me. I must have been concentrating less, though, than the other bloke, because he answered straight away without clarification.

All in all, I enjoyed the lecture, though, and my fatigue allowed me to stay on a bit afterwards. Who would have thought an economics lecture could be so exciting?

Cheers,
Mike