How to celebrate my recovery

I think it's very important for recoverers to celebrate the wins from their recoveries: that's another thing that helps keep us going during dark days. There are two things I think are important to the way I celebrate my recovery:

• some time ago, my brother had the great idea of not doing anything on the 20th February, the anniversary of my accident, but on the 21st, the "anniversary" of my recovery and
• consistent with my thinking discussed in this 2008 post that the state of my recovery depends on what goals I've achieved, I make special emphasis on celebrating my recovery when I've done something cool.

Earlier this week, I had a special celebration on the evening of the 21st. It was the seventh anniversary of my recovery and, during the last couple of years, I achieved the two big goals I discussed here, completion of my Ironman and my Masters thesis. I went out with my parents for a special meal that night to celebrate.

For some reason, I felt like I had an extra reason to celebrate this year, it felt like I was ruling a line under my recovery. Of course, as I discussed in this post, I firmly believe my recovery will continue from here. However, eventually I think our lives and our recoveries become inseparable. That was what I reckon I was celebrating: I was ruling a line under my recovery by acknowledging that my life and my recovery had become inseparable. I'll continue thinking through this idea so, if I'm confusing you by referring to it, please hold on and look out for my further posts on the subject.

Cheers,
Mike

Getting Red-Carded!

In New Zealand's favourite contact sport, Rugby Union, players receive a yellow-card if they commit a foul bad enough for the referee to suspend them from the game for ten minutes. Players receive a red-card if the referee decides to permanently suspend them from the game. A similar sort of approach is used in football or soccer.

Basically, I know when I'm tired, but, if I'm trying to stay part of the action, I might not respond to it. My brother adapted rugby's card system to encourage me to manage my fatigue.

If I look tired enough for a one, I'm given a yellow-card and sent off for a half-hour neuro-rest. If I'm so tired that a normal neuro-rest won't be enough and it's the end of the day, I get a red-card. Time to pack it all in and head off to bed.

While somewhat light-hearted, this system is great for keeping me focused on what's really important here; managing my fatigue! Hope it also helps others.

Cheers,
Mike

Patients' Approach to Specialists

A friend recently emailed to me this New York Times article. The final section on How Patients Can Help is right up my alley and I wanted to blog here about it!

The article refers to a few key concepts, some of which I've blogged about before: having lists of questions when seeing specialists, turning up to appointments with at least two people and being (very) familiar with one's condition. The article does warn about "oversearch", but I think that's less of a problem if one keeps in mind that one's own case may always differ from others.

I hope my readers enjoy the article.

Cheers,
Mike

Double Team 'Em

After recently helping me see yet another medical specialist, a family friend remarked on a good strategy to use for specialists: Double team 'em! Make sure there are two people there: one to follow a line of thought, while the other thinks over what gets said.

Each answer a specialist gives may well cause a recoverer to have further questions. With a two person team, one can listen carefully and think about those answers while the other follows up a different point. This strategy will make a two person team much more effective when seeing medical specialists and working through the ramifications of what they have to say.

A two-person approach can also make up for cognitive problems bought on by a TBI recoverer's brain injury - problems like forgetfulness and lack of concentration, particularly.

The friend who suggested it is a former New Zealand diplomat, someone used to hairy negotiations. I like to think how a strategy commonly used in dignified halls of government can aid me in my recovery.

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

Dave's Family

The Role of Family and Friends in the Recovery of Cancer Survivor, Dave Colligan

Leading on from his post about the importance of family, Mike encouraged me to write about my own thoughts on the subject. I mentioned in my previous post about the phases of recovery one of the bad side-effects of the chemotherapy drugs I was on is that it practically wipes out your immune system for the period of the treatment, so any type of infection, even a minor cold, can be dangerous

Given that danger, the hospital were very keen for me to call an ambulance whenever I needed to come in. “You shouldn’t ever feel embarrassed, just call one!”, they’d say!. But I was too embarrassed because it didn’t feel like I was that sick – just that I had a bit of a temperature – so Mum and Dad became my personal ambulance service. They would throw me in the car and quickly drive me down to the hospital - just about as fast as any ambulance.

Mum would also make me nutritious meals that I could put in the freezer and just heat up on the weeks that I had my chemo. She was more keen for me to leave my flat and move home with her and Dad, but an important part of my recovery for me was that I still had my independence so this was a bit of a compromise! My sisters and friends would be happy just to sit around and chat or hang out and watch TV on days that I didn’t really have the energy to do anything else. That was important to me because I never felt like I was the only one going through this experience.

Like Mike, I think one of the most important parts of my recovery – both the treatment phase and post treatment - is having a fantastic support network. I’d really like to thank my family, friends and medical team for helping me and continuing to help me through a challenging time in my life.

Dave

Mike's Family

In the post, There For Me, I said I'd have a crack at summarising some of the main ways my family contributed. To keep this post to a realistic size, perhaps it's easiest if I run through each family member and talk about some of the crucial ways they contributed.

• I talked here about how my Mum and Dad have always talked to me about how I'm finding stuff. Nothing has ever stopped their pursuit of (sensible) knowledge of that and also what might help me out in my recovery. For instance, Mum found out about My Brain Trainer for me and Dad greatly encouraged me in my search for a better surgeon to help me with problems with my eyes.
  
• My sister and brother-in-law organised for me a bunch of technology-related things to help me recover. They were this blog to update friends on my recovery and a computer with an internet connection while I was still an inpatient in rehabilitation. I'll write more about both shortly.
  
• My brother always had unshakeable faith that I would recover well. Obviously, that lost its important as I proved him right, but it was especially so early on. My brother's faith was very important to the morale of my family during the dark days I was still in a coma.
  
• My extended family who unquestioningly had me along to family activities, such as outings, parties or even just my cousin's weekend sport. To be good for my recovery, I don't think it really mattered what I went to, just as long as there was plenty of people there. I've written that my personality didn't change much, but, even if it had, it wouldn't have mattered to my extended family!

Hopefully this gives you a quick run down on what families can do for you.

Cheers,
Mike

There For Me

I've recently taken a moment to reflect back over what I've written about on this blog so far. There's one thing I've alluded to, but have not properly got in to ... until now. That thing's actually very simple; it's family! Time and again during my recovery, my family has come through for me. I come from a very tight-knit family of six that's part of a much larger extended family group. And they've been doing an awesome job of supporting me throughout all of my recovery!

It's very difficult for me to put in to words what my family has meant and continues to mean to me and my recovery, overall. Rather than trying to describe that, I'm going to take an easier option. I'm going to write down the more major ways my family has contributed. I'll talk to some of my recovering friends about doing the same. In that way, I hope to show you the range of ways that family can make a difference.

If you're in the family of someone with TBI, please remember that you have the power to be a tremendous force for good for that person's recovery. Times might be tough and personality changes and general difficulties might have made the injured person seem entirely different, but please hang in there and see what you can help them become.

If you're the one with the TBI and you don't have a close family, I seriously ask you not to despair. Like the determination to recover, family is only one of a number of factors that may or may not lie behind a successful recovery. Yes, I see it as important, but not having a close family certainly doesn't stop you from relying on other factors. Case 2 in the case series report I link to on the right hand side of this blog discusses a recoverer without significant family support. He says, "It comes down to being tough-motivated, strong, disciplined, accept small steps in your recovery, [and] learn from your mistakes."

So, while important, family is certainly not a be-all and end-all.

Cheers,
Mike