Brain damage , experiences and everyday life

Brain damage , for most people something they can’t really get grips with. It’s hard too imagine one day waking up and being unable performing even the most basic of tasks without these simple things being incredibly difficult. And in most cases it’s ‘ invisible’ . Nearly 3 years in too my recovery I have learned a lot. Maybe I have written about some aspects in earlier posts but it helps putting my thought in order, so bare with me.

After my revalidation process where I learned how to handle the most mundane daily tasks, comprehending my place in the larger world began. Where the first steps were about not forgetting putting out the stove when going outside, taking your keys when going out, and more of the sorts. It was now about issues much bigger. What is my place in society , what can I still offer in terms of work, helping people and what are achievable goals for me?

These questions were much harder too awnser than expected. During the second year keeping the routines as learned during my recovery had the priority. Creating a stable day to day environment was one thing I underestimated greatly. Easy weeks give a false notion of being able to do more or a lot more the following week or weeks.

All too soon the I found this to be a mistake , your efforts need to be in balance , creating a tension between rest and activity good enough to keep you going. An excess week in efforts will cause weeks of instability.

After the second year and getting a rhythm going, it was time looking ahead. My internal optimist was still thinking in terms of careers , and being ‘normal’ again. The first difficulty came when looking for sorts of an internship where I could experiment with how far I could go and what I could still do within a working environment.

Everybody I had been speaking with was full of admiration with my commitment and tenacity but ultimately most didn’t see a possibility for me working with them. Doubts about risk and the practical issues with providing me with the right support were dealbreakers.

Fortunately you just need 1 person taking a leap of faith. Which in my case someone did. It is of the utmost importance to be joining society again, in any way, in this case being back in a work environment. I have the freedom setting my own limits , have a group of very friendly colleagues, there are coffee machines (you miss those when not around). And most importantly I have work at my own level and in my old profession.

These seem small things but very important in terms of your self esteem. It’s also useful with planning your weekly activities , parts of it are filled with work and I don’t need to fill in my own. You get out the door and there is a rhythm.

Getting back in my area of expertise was very important , where learning new things doesn’t come easy if it’s related too older knowledge which I had before my brain damage it’s much easier. I am a lot slower and I can manage far shorter hours of focussing and need a lot of rest. But by relying on some basics from the past it’s easier to maintain. It takes less energy than totally new stuff.

I have tried learning something new. Working with my hands for example. Fixing bikes, soldering and the like. Fun as a hobby maybe, but it took me ages and lot’s of energy getting the most basic routines under my belt. My motor skills were simply not good enough anymore. This way proved to be a dead end.

Returning in my old profession, albeit at a slower pace and less demanding, proved vital in my succes in the workplace. A lot of people try different professions after a serious accident and recovery, and for me this was a first reaction, let’s learn something ‘easier’ than I was used to. This turned out to be the wrong way. At least for me. Maybe there should be a bit more room for exploring the stuff people already know before doing new things. For one I am not less intelligent , just a lot slower. A full time job is hard but it doesn’t make you a complete ‘write-off’

So all in all getting back in my old ways is a good thing, and has resulted in a parttime job. I have left the idea of full time employment. It’s still in the back of my head though. And I will try and bent it a bit further in the future. For now it’s been a boost in self confidence and gives back a bit of independence. Very important indeed.

Society is equipped for people who can run at full speed within the society. Preferably a bit faster. As soon as you get to an abrupt hold , for whatever reason, it’s very hard getting back in. In theory there are guidelines, programs and projects aimed at letting people with a disability being part of society again.

All good intentions and efforts aside, theory and practice are far apart. I have been lucky, met the right people willing to help at the right time. Others are not as fortunate and have daily hindrance on top of their usual problems. It takes an extra toll on these people. Because I know they would love to find a place to make a positive impact on society.

3 years later

It has been 3 years already , since my brain injury, a sort of 3th anniversary combined with my 39th as it were. It has been a year of learning, yet again about dealing with the inevitable limits caused by permanent brain damage. Most notably the realization that there is, in fact a limit in what I can achieve. Building at expanding my activities in the way of work, social life and all other activities is not something I can do limitless. Although this was always in the back of my head, by planning meticulously and adding slowly that I somehow could return to my old levels, and in a way my old self.

As it turns out , that’s not the way it works, last year I upped my working hours towards 8 hours per week, first in 2 days and later on spread out over 3. It all seemed to work out, at least this was the initial feeling. Until the fatigue hit me and it took a couple of months in recovery getting back.

So I will keep it at 6 hours over 2 days. Which means I can recover and get a social or other activity in a week. Which is always fun, especially getting together with family and friends. In my enthusiasm I will go over my limits on such occasions , just because it’s so good having people around. So it’s a bit of a focus this year in getting the most out of that time spent.

In this quest in staying as stable as possible , keeping myself fit is crucial , the fitter I am, the better I can cope with moments were all else fails. Purly on physical strength I can manage to stay afloat. Getting home when I miss a train, It’s way too busy or if I simply forget too rest enough.

Periods in which I could exercise less my overall functionality and recovery was way off. It took ages. Luckily I really enjoy my running sessions, which clear my head like nothing else. It’s the one thing I can really control which is excellent because it’s vital in my ability too function properly.

A discovery which I hadn’t made when I was in my revalidation stage , is that the left side of my body is way worse than it was before. I hadn’t noticed this because I predominately use my right. By getting into exercising and building strength on my left side, I hope too improve this.

The hard part is realizing that I am , most likely at my maximum capacity , and I now know what it takes to stay at this level. A lot of disciple , rest staying fit and planning. It’s very weird not having a full time job , bering dependent on other people for a lot of things and being restricted in crafting your own future.

Nevertheless , I am very lucky being this well off, having a lovely group of family and friends to lean on. This makes me a very happy and fortunate person. Which I am very grateful for.

For the future it’s important too find real acceptance and not too hold on too the past and the vision of getting to were I was before this happened. I have too find progression in a more natural and organic way instead of just pushing my limits.

Find the challenge in things I can control.

Experiments , traveling by plane

Last month I did another experiment if you like, on how far I can go travel wise. It had been time for a good old fashioned holiday for some time. After successful small trips and lessons learned it was decided , flying with destination Tenerife, Canary Islands.

The B&B and the small town we stayed in were both familiar from previous visits , so the adjustment period should be minimal. Normally this was just the start of the trip or the end right after or before flying in or out. Now we would stay the week and see how things unfold.

The weeks before I was very nervous and anxious about the whole enterprise. What if I was forced too stay in bed the whole week. Things just didn’t sit well with me. Went anyway.

We booked a hotel near the Airport to cut the traveling in little bites so I could rest a bit more. Early morning flight so we took a cab to the airport, dropped our luggage and took our time. After boarding we had the furthest possible runway , the first few hours went pretty well, in the last hour my mind couldn’t keep up and I could not free myself out of the noise, movement and pressure.

Luckily we landed and the sun was shining, took a taxi towards the B&B and our room was almost ready. My initial expectation was that this was a crash moment. Luckily my afternoon sleeping breaks covered the fatigue and mental problems pretty well. So we enjoyed the village , food and sun and relaxed.

The first half of the week the afternoon naps proved too be sufficient enough , added we didn’t do much besides them anyway and all went well, the second half of the week sleeping wasn’t enough anymore. So the crash moment came later then expected.

In the second half we enjoyed a public transport trip to the capital of Tenerife and with a final meal at our favorite restaurant it was time for the flight home.

It was very good to be out of the country and having a ‘real’ holiday. Simply being abroad just adds to the overall holiday feeling.

It was a mixed bag in terms of my condition, before the trip I anticipated the first half to be a problem, which turned out to be the second half, and compared too out previous holiday’s we didn’t do a lot. It’s an adjustment I need to get my head around. One week of not doing much and just enjoying food sun and relaxation I can manage but after that I would like too see more of the place I am visiting.

After coming home I had troubles I finding my rhythm again , being tired and not committing enough time to rest. All in all a lot of lessons learned and perhaps I’ll have another go in the future. Never stop trying, and exploring , as they say at a famous outdoor brand.