Christopher Reeve, one of my heroes, once said: "A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.". Whilst I don't consider myself a hero I have persevered and endured in spite of some obstacles the last two years.
In want to share my story with you hoping that members of BGG who are currently suffering van muscle diseases or other illnesses can relate and get some strength and hope from my story.
My challenge (the Elfstedentocht) will take place on May 20th, 2013. I will let you know how it went.
When looking at the board of Game of Life I was advancing quite well till March 2011. I was happily married for two years and we were the happy parents of our son Kevin, who was two years old at that time.
We lived in an apartment, but had just purchased a house, which was still under construction. During the day I was a junior civil-law notary and I had just discovered the world of boardgames.
In the weekend of March 5 and 6 of 2011 things went bad. On saturday I started to feel ill and went to the docter and the emergence room of the hospital. I was send home, but returned on sunday only to be admitted to the ICU.
The Guillain-Barré syndrome is a disorder which affects the nervous system. Ascending paralysis, weakness beginning in the feet and hands and migrating towards the trunk, is the most typical symptom.
Every case of GBS is different. Some people only have weakness in their feet, others are completely paralyzed. For some people it takes weeks till they reach their worst points, for some it only takes hours.
I wasn't lucky as I had a severe case. In only a matter of hours I was almost completely paralyzed and wasn't able to breath on my own any more.
It took me seven weeks to breath on my own again. For seven weeks I was completely paralyzed. Conscious but unable to communicate with the world. Seeing all my loved ones (including my son) crying at my bed at the ICU. I guess that was the most difficult period in my life so far.
GBS cannot be cured, because they still don't know what's the exact trigger. They can only fight the symptoms with medicine. As side-effects to the medicine and being in the situation I was, I had a lot of hallucinations the first couple of weeks, I also had a high fever and multiple lung inflammations.
I learned later on that the docters had said that my change of survival was 60 percent.
I was in the rehabilitation centre for 5 months. When I got there I could only move my shoulders and a bit of my arms. When I left my arms and hands were fully functional again (although a bit less strong). When going outside I could walk short walks with a walker, inside I could walk short walk with (and sometimes even without!) crutches.
It was a difficult period. Not being able to do things yourself, learning to use a wheelchair, learning to walk again etc.
When I was at the rehab-centre I was able to use the internet again and I asked on the Bordspelmania.eu (the Dutch boardgame community) if there were games I could play even if my hands weren't fully functional and were shaking a lot.
I got a lot of answers and support from the members there. One of the bordspelmania (and BGG) members,
My recovery at home actually went pretty well for quite some time. But when I wanted to start working again (at least for two hours a week) fate struck again.
Business was going bad due to the crisis and they had decided to fire twelve employees. I was one of the twelve employees. Because I was still sick we had to go to court. The judge agreed with my former employer and for the first time in my life I was unemployed.
Lost my job and we still had an apartment and our new house, because we couldn't get the apartment sold. Budget was extremely tight and we really started worrying about our future. Also I wasn't getting better anymore. Could this be it?
My marriage was really under pressure, but we made it through.
Every day is still a struggle for me. I still can't feel my toes and the rest of my feet hurt 24 hours a day and 7 days a week. I can't stand or walk for a long time and I get tired sooner and more extreme than other people. Besides that I can't smell things anymore.
Still haven't found a job either.
But, my apartment was sold in december 2012. So that's great. And I'm really enjoying my life. Of course I still have difficult moments when I'm sad that I can't do the things I usually did. But I could have ended up worse. I still have my wife and son and who knows, perhaps I'll get even better in the future.