Feeling Sorry for Myself

In the post, At Least It Wasn't Worse!, I set out a pretty good way for me to avoid feeling sorry for myself. I think about how lucky I am to still be here and still be here in fairly good order. It's good to remind myself of that from time to time. To do that, I hang out with guys that are very affected by their TBIs.

For much of the first seven months following my accident, I was in a brain injury rehabilitation centre. It was very easy to get to know the people that lived there, some of whom were so affected. Those guys can't do things like speak or walk let alone work, drive a car or live by themselves, but they're very much still alive.

Getting to know them, it's very easy to see that they've had such a rough deal from their TBIs, yet they're still really good people. It's no problem having good, rewarding conversations with them communicating through body language or communication devices like the Lightwriter.

I can assure you that, for me, this certainly isn't a competitive thing. I don't look at them and feel good that I've recovered better. I would absolutely love to see them recover further. In the mean time, I will continue to do my best to drop by and say hi when I get the chance. It's the least I can do since there probably wasn't much at all that stopped me from being more like them.

Cheers,
Mike

The Game is Still Wide Open!

I started this label, A Case for Hope, to talk about the distance I've come in my own recovery. It's seen me go from a coma to something approaching normal in about three years. Recently, however, I've come across several stories that made me want to say more about hope.

My first point is that the brain is an exceptionally complex piece of equipment (and the bold text's because I mean it!). Quite simply, it's light years from being even close to properly understood! I find it somewhat disappointing people don't appreciate the head on their own shoulders when they suggest the human brain is reasonably well understood. When it comes to understanding even just how much we do and don't understand about it, it seems like we've got no jolly idea! For instance, scientists don't yet even understand why humans (or any mammal for that matter) need to sleep! Don't believe me? Take a look at this BBC article.

Since we don't come close to understanding the brain, it seems obvious we won't really understand recovery from brain injury. Three years in to my recovery, I am only now getting an appreciation for how little is understood. For instance, take the connection between the length of time in the coma-like state, Post Traumatic Amnesia, and the severity of a brain injury. I've previously had this link presented to me as being reasonably strong, but the article now on the right hand side of this blog, Debunking Ten Myths of Brain Injury Recovery, underlined that recent research refutes there being any strong link.

I certainly do not deny that there are and will continue to be heart-wrenching stories of TBI recoverers very affected by their injury. Nor do I deny that TBI recovery is a long, hard road. Rather, I say all this because, if you or someone you love has just had a TBI, it is very likely that there is nothing that can rule out a strong recovery. The game is still wide open!

If the game is that way, what can anyone do to recover well, what can help them win their game? The answer seems to me to be, start by having the right attitude. Believing that you can't recover further is very likely to make it so. Believing that you can recover is the start to making a good comeback and that is what I wish for you!

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

The Phases of Recovery

Another View on the Process of Recovery from Cancer Survivor, Dave Colligan

I agree with Mike’s idea that recovery is a journey rather than a destination. Four and a half years on since my cancer diagnosis, I’m still officially in recovery with check-ups scheduled every 3-4 months, but it’s not like I’m actively receiving treatment anymore. So, to build on Mike’s view, I like to see recovery as a journey with different phases.

Phase One for me was the treatment stage. The chemo and radiotherapy probably couldn’t have been more effective on the tumours, but the side-effects of the drugs made things difficult at times. A major one was that the drugs practically wipe out your immune system for the period of the treatment, so any type of infection, even a minor cold, can be dangerous. I had to constantly monitor my body temperature, and if it increased by 0.5 degrees Celsius [Ed’s note: slightly less than 1 degree Fahrenheit] I was to call the hospital immediately and it generally meant a trip to the emergency room.

Phase Two is the post treatment stage where they regularly check to see if the cancer has relapsed. In contrast to Phase One, it has been (luckily) very straightforward. I get the results of check-ups approximately every four months. I’ve been in Phase Two for nearly four years now and the chances of the cancer reoccurring are becoming more remote by the day. However, the thing with cancer is you’re never really ‘cured’. Instead, you’re classified as being ‘in remission’.

Mike wants to keep this blog focused on TBI recovery and he and I discussed applying my phase idea to that. He thought that TBI recovery fits well in to a three phase structure with the extra phase at the beginning. Phase One becomes the period of time in Post Traumatic Amnesia before treatment can properly start. Then treatment and post treatment stages of my cancer example become Phases Two and Three.

Mike thought that the distinction between the treatment and post treatment stages wasn’t always clear for TBI recovery. He said, “Even after discharge from, say, a rehabilitation centre, a recoverer may well continue to seek help for specific problems, as I’ve been doing.” But he still thought a phases approach very worthwhile.

The nice thing about the phase idea is that it’s good for motivation. You don’t feel like recovery is one endless slog. Yes, it goes on and on, but, if you keep in mind the different phases, it does so in a clear, structured way.

Dave

The Face Game

One memory problem I have is word recall. I know I know the word, but just can't get it out. Often, there'll be a similar word or even just a description I can use to get my meaning across. However, there's one set of words I can't do that for, names! If I'm trying to say someone's name, there's no other word or description to use and any pause while I say it is simply embarrassing. I look like I don't know the name even when I do, but just can't manage to say it.

Eventually, I realised a way to work on my problem. Walking around town or some other crowded place, you often see people that look similar to people you know. As soon as I see such a person, I try to remember the name of the person they remind me of. So, what's the name of my friend with the moustache that looks like that guy's? What's the name of my old teacher who has a thoughtful face like that woman's?

I can even simulate pressure on myself by thinking, I've just run in to that person and I've got to remember their name now, now, now! Dealing with remembering under pressure seems to be a big part of my problem.

I'm not saying that every TBI recoverer needs to play the Face Game, just that, if you decide you need to work on one thing in particular, there may well be some child-like game that you can use to do it.

Cheers,
Mike

I'm a Specialist Too!

I know it's easy to feel overwhelmed by the immense background and knowledge medical specialists have. It's the countless years of training, often backed up by countless years of experience. It's understandable that most specialists give the very confident impression that they know what they're on about. I've written before that I haven't received any medical training at all, so there's an awful lot I don't know about, in comparison. There's one very important thing, though, that only I bring to the party. Only I properly know about me!

Those specialists don't notice the amount I do about myself. Funnily enough, they're not around me as much as I'm around myself, so how could they? They don't know exactly how I've been feeling. They don't know about the causes and consequences I think I might be seeing.

The human body's an exceptionally complex piece of equipment. I've alluded to, but not written about (yet!) how complicated the brain is to properly understand. While somewhat less complicated, the rest of the human body is far from fully understood. So, whether I'm seeing them about my TBI or any other problem, there will always be the chance that there'll be something important my specialist won't understand. Of course, there's a very good chance I won't understand it either, but I do have one important edge. I know more about me than they do.

Given my important edge in that kind of knowledge, when I see a specialist I want to be treated with respect. I want to be treated as an equal because, when it comes down to it, I am a specialist too; a specialist in me! Medical treatment is an important factor in How to Recover, but it's a team game. It'll be better played if each member of the team understands the contributions they and the other members of the team can make!

Cheers,
Mike

Stamina

In the post, Recovery from Any TBI, I wrote about how a severe brain injury wasn't that disruptive because of the severity of any one problem it caused, rather because of the number of problems it caused. Indeed, my accident caused a bit for me to deal with. I can remember (and there was a good portion of time early on in my recovery where I don't remember) seeking help for eight separate problems related to my accident - things like relearning how to run and learning more about problems with my vocal chords and speaking. All but one of these problems were caused by my brain injury. For those eight problems, I've seen eight different specialists (four of which I saw about this problem with my eyes), two general practitioners and twelve others (therapists, nurses or technicians and the like).

Those eight don't include all the problems I've had, but haven't sought medical help for (normally because I don't think it useful). Chief among them is fatigue, but the nature of those problems extend to things like needing to relearn how to eat without spilling stuff down my front. :-)

I wrote about the very involved approach I take to medical help in the post, I'm the Boss! That approach is difficult to maintain for every problem I've sought help with and so I've called this post, Stamina, not because I think I have it, but because I wish I had more of it.

One idea I've used to maintain my involved approach is to stagger my appointments. For instance, I decided not to seek help with my excessive sweating (probably caused by an injury to my brain stem) until after I'd had my eye problems resolved. Remember this is three years after my accident now. So, yeah, stamina is what I wish I had more of.

Cheers,
Mike