Most people have hobbies, things they really like to do in their spare time. Brain injury can have serious consequences for such activities. Here I want to tell the stories of patients who have told them to me. I listened and watched how they coped with their losses and disabilities. It was their perseverance and creativity that gave me hope. That is why such stories deserve to be told for everyone to hear and read. In the hope that others will learn from these stories.
Hobbies can be anything and can be divided into two sorts of activities: one that involves largely physical energy and one that involves mainly mental capacities. Of course, you also have the mixed form. Fishing, constructing, cycling, playing baseball, basketball or most other sports, are examples of more physically oriented hobbies.Sewing, knitting, drawing, painting, sculpturing, listening to music, watching television, reading, writing, playing cards are examples of more mentally oriented activities. Actually, it is a misconception to think that an activity has little need of any mental capacities and can be largely physical. What I mean is that your brain is involved and active all the time, especially in doing some sort of sports.
The reason I made a division in more physical and non-physical activities is that I want to make clear that when brain injury strikes you down, you are likely to experience a downfall in your (physical) activity level. After a stroke, usually one side of your body is paralyzed and you have to learn to walk again. Most physical activities are then very difficult to do. Later in your recovery process, more physical activities can be done, mostly with some sort of aid like for example a sports wheelchair (to play basket ball). Brain injury usually also has a negative effect on your balance and coordination and that as well hinders doing physical activities considerably.
When physical activities are not really possible, other things in the mental realm can be found. The problem I usually encounter is that people are not really flexible in choosing new things to do. Especially men, who normally had more physically oriented hobbies like cycling, constructing, jogging, are difficult to convince that mental activities like reading, sculpturing or painting can be fun as well.
In cycling, brain injury can have changed your balance so it becomes much more difficult to step on your bike. Cycling itself is usually not so much of a problem, balance can be maintained when cycling. However, stopping/braking and at the mean time trying to hold your balance with one leg without much power and strength, that is the real challenge. For healthy people: just try to step off your bike while using just one arm and hand. Stroke victims have to do that and this is a serious problem for them. However, in rehabilitation we look at the options. And there are options. One can use a tricycle: a bicycle with three wheels for more stability. Luckily, there are very sportive models nowadays in which you can lie down.
Keeping your balance is difficult in most sports like jogging, playing baseball, golf or tennis. Usually, with heavy tempo changes patients loose their balance quite easily. Attention is needed to keep your balance. As said earlier, brain injury diminishes your attentional capacities. However, options here are to use aids like a sports wheel chair so different sports can be done in a wheel chair. I have seen patients playing basket ball in a wheel chair, or playing tennis. Even golf is possible!
Brain injury also can impair the use of one hand so you only have one functional hand and arm. Try sewing, knitting or sculpturing with just one hand. It is possible but it does cost a lot of patience and energy.
Fatigue: that is what most people say after a brain injury. They are so much more and easier fatigued than before. For a long time I thought this had a lot to do with their physical paralyses. Now, I think that there is another explanation that can explain this fatigue even better. After a brain damage, the total 'battery level' of your brain is much smaller than before. It takes a year or so to regain a reasonable battery level again. And it won't become completely normal in most cases, especially not after a stroke. Actually, fatigue can be measured indirectly by measuring the attentional capacities of a patient. But this is still controversial: not every scientist correlates attention with fatigue.
But even when physical disabilities are minor, physical hobbies can be hard to do. Like when someone wants to play tennis but his visual field has a left-sided defect. He can not see, or too slowly, the balls coming from his left side. So he can't return them in time or not at all. The same problem here in playing badminton, or every other ball game. The best compensation usually is to slow the balls down so there is ample time to look for the ball. Tennis is played with soft balls in a hall because such balls are much slower than normal tennis balls.
Not seeing everything, or misinterpreting your spatial surroundings, can be nuisance in construction building or even in fixing your gate. It takes much more time and patience to use aids like a ruler to measure correctly all distances. It is not the first time I've heard that a gate turned out to be rather in a different slope than expected. Or that a painting was hanged in a skewed position. And constructing a closet out of the construction drawings usually turns out to be a disaster. In such activities there is only one advice: please use help of someone else. Together you can do several simple things so you still have the feeling that you have helped making something.
Quite a lot of brain injured patients realize pretty soon that many physical activities are not really possible anymore, or at least have to be reduced drastically. So they turn towards more mental activities like reading, watching television, sculpturing, making puzzles, painting, or even the computer (internet, mailing). However, this is also not without its problems due to attention, vision or memory problems.
Reading for example is much more difficult to do when you miss left side information. Usually you can not find the first left words anymore in a new sentence so all sentences become quite difficult to understand. Also, it seems pretty irritating to look every time for where the next correct sentence is. Reading takes a lot more time, one page is read in 5 minutes instead of just 2. But also reading words itself can become quite difficult when you miss the left side of the words itself.
The same goes for watching television: the subtitles are hard to follow because of left-sided field defects or a visual neglect. But also when perception is intact, attentional problems can cause not keeping up with the speed of longer subtitles. Watching a longer movie of one and a half hours becomes tiresome and irritating. Usually it can not be done. My advice is to record the movie and watch it in parts, for example on a DVD.
When painting, sculpturing or sewing, missing parts of the visual field are seriously hampering these activities. It can be done, but it takes much more concentration and time to do it. This costs so much energy that the activity can only be done for about 15 to 30 minutes. Usually, help from another person is now and then needed.
When reading all these sad stories about the difficulties patients with brain damage encounter, you'll certainly get a hopeless feeling. And I certainly will not take that away, because sometimes it is really hopeless. But that is the trick: you have to realize the reality, sometimes a situation is hopeless. That is when you have to start all over again!
I mean, sometimes you can't seem to see a solution because there is none...at least not in the form you are used to. So take a look towards the other side, towards other hobbies, or towards other forms of hobbies. Then you will notice that there always is an option to do things slightly or even completely different than you were used to. The largest handicap after brain injury is not the specific disabilities you have, but the inflexibility to look around and try something different.
It is astonishing to hear from patients themselves that it sometimes took an agonizing whole year just to realize that a hobby like tennis was not possible anymore. And that a hobby like wheel chair tennis with soft balls was possible indeed! Patients who managed to pick up their lives again, sometimes after a deep depression, convinced me that they had to look differently, search in different directions instead of looking backwards and hoping they could do their old, familiar hobbies again. One man told me quite bluntly: "you have to start all over again! And I do mean ALL over again!" The essence of this message is the most important lesson you can learn after a brain injury: do not look backwards they way you were, but look forward with the way you are now. In my pages on Brain Training I will say much more about how to overcome disabilities and how to make sure your handicap is minimized.