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.