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MY STORY
How I underwent and am undergoing itI am lucky to have recuperated as much as I have.
For the precise illness I suffered (Meningoencephalitis, a Non-Traumatic Brain Injury) very few people recuperate as much as me. If I had not gone to hospital it would be very unlikely I would still be here, and if I was, there would be very very little left of me. Even those that go to hospital do not always recuperate as much. Neuro Fatigue is the most important remain that I carry. It all happened very quickly. I returned to Switzerland for the week-end after a few days of work in the Netherlands and was just feeling tired. I began to sleep a lot. I also began to act strangely, not being able to think like normal. After about 4 days the doctors had been called and made the decision to bring me to hospital. The first thing I can remember when I was I hospital (in April 2010) is that there were 2 people in front of me claiming to be my parents. I could not recognize them. Then it took me minutes to find a few words for them to vaguely understand that I was trying to say that don't know who they are. In a few days I had gone from having a normal life to being almost completely disconnected from my memory, sleeping almost 24 hours per day and unable to do anything. The cause is a “Non-Traumatic Brain Injury”. It was not due to an accident. My brain was affected by an internal cause called Meningo Encephalitis. Despite my modesty, I can say that I am a special case ;-), the precise item that got to me affects one person out of half a million, it is a very rare case. The meninges are the layers of thin tissue that cover your brain. If these tissues become infected, it’s called meningitis. When your brain becomes inflamed or infected, the problem is called encephalitis. If both the meninges and the brain are involved, the condition is called Meningo Encephalitis. It needs to be promptly diagnosed and treated. This disease is fatal most cases when it is not treated. Many people who survive it have long-term problems afterward. Many kinds of viruses can be to blame for this. It is something that many people carry inside themselves. We sometimes carry it during years before it goes to the wrong place at the wrong moment and creates harm. Many people carry it all life long without ever knowing about it. I spent 3 months in hospital. It took approximately 3 weeks before I could even walk. My number one priority after a few weeks in hospital was to learn and remember the names of my friends. After 3 months, before letting me out of hospital, the doctors did a test to make sure I would know how to manage the most important items and not set my apartment on fire. I underwent treatments and training during one year to recuperate my ability to speak, write, read, etc. I sometimes spent more than 2 hours in a supermarket to figure out and find what was written in the shopping list. After 6 months, if you showed me a banana and asked me what it is called, I could not find the word. It is after approximately 6 months that I began to vaguely remember what my previous job was. During the first year or so, I in some way re-lived the previous 33 years of my life. I truly went through the process of having to remember what I had lived in the past. I went through remembering the people I had known and spent time with in the past, my weekends, my previous jobs, etc. After one year, I had recuperated enough to go realize a part of my dream. I undertook an incredible 7 months trip around the world, took pictures and made photo albums. This was amazing! I finally got to go undertake and know more about what most interests me. During this first big trip I pushed myself to the limit. I had no idea about the true remain of the illness. I thought that it was temporary, that I would get back to work and not soon have another opportunity to do such a trip. I therefore did not listen to my body a lot at all. I sometimes was so tired that my brain probably quite seriously lacked energy. What I most remember is that when in the Pacific, I at some point wanted to remember previous parts of my trip but was too tired to remember them. I had to look at the pictures I took to help me remember what I had seen… It luckily came back to my mind when I got some rest. I was very optimistic and had no idea about the true remain of the illness. I knew that I was tired but thought it was temporary. It is when I tried to get back to work that a long process of understanding the true remain of the illness began. People around me were telling me that "it is stress", that I should be more relaxed. I therefore waited a long time before going to see a doctor. I tried all sorts of natural therapies. In September and October 2012 I decided to go spend two months in Togo Africa to contribute helping people in a little village. I chose to do this for several reasons. One is that I thought that I should start by undertaking a less mentally challenging occupation during some time while waiting for health progress to occur. The two months in Togo are a special experience that means a lot to me. It was however challenging. I was not always feeling well. I then decided to go spend some time and try some more in Barcelona. In April 2013, three years after going to hospital, a doctor made a scan of my brain and showed what is still broken and explained what is the true remain of such an illness. I was not yet prepared to give up, and continued to try different medicine and kept the hope that I would never the less somehow find a way to go back to living a "normal life". When attempting to find solutions I tried all sorts of medicine. Some of the attempts I made in 2013 had such important negative effects on me that I went through some extremely difficult moments. One attempt in particular, so seriously affected my sleep and feelings that I during a few days became seriously depressed. After a bit more than 4 years my body had sent me enough warnings when persisting to work, and so I decided to go back to doing the one thing that motivates me and my body accepts that I undertake if I am careful. This is why in August 2014 I again departed to go undertake an amazing trip that is more than I ever dreamed of doing. Considering the situation I decided to go travel again without putting a true limit to how long I would travel for. The remain of such an illness is so profound and complex to explain that many people that are living from a severe brain injury consider to be living a completely "new" or "different" life. It is, in my case, a completely invisible illness with consequences that are very difficult for outsiders to imagine and understand. I myself still have difficulty explaining it. THE REMAIN OF THE HEALTH ISSUE : Our brain normally uses about 30% of our energy. The most important remain of the illness that I carry is that my brain probably uses two or three times more energy than normal due to the damage. It is what people call "Neurofatigue". The most important consequence is that I therefore very rapidly become mentally tired. Anything that requires concentration makes me more tired than normal (including spending time behind the computer, reading, writing, driving, etc). It is difficult to give precise numbers of my capacity because there exist serious differences between days when feeling well and days when not feeling well. To answer quickly, my average performance for not too intense work is approximately two hours per day. It is also under condition that I am not undertaking any other intensive tasks such as driving, going to places with lots of noise, etc. FINDING A BALANCE One most important thing that I learned is that it is necessary to find a balance. The more I respect the limits that my health issue imposes me, the less complaints my body will send me. It took time for me to truly understand this. It then most importantly took a long time for me to actually apply it. I have so many dreams... So difficult to prevent myself from doing things... I have become more and more careful, but still sometimes overdo. I have undegone much less extreme moments of unwell these past few years. I for example was not very careful in the past about the number of hours of driving that I undertook. I have now understood that I should limit myself to maximum 2 hours in a day and not too many days in a row. My mission is to “Kill Time”. I had to find ways to convince myself to do things that my health agrees that I undertake. The most evident activities that my health encourages me to undertake to achieve this are : - Walking (hiking) + other soft sports such as swimming, Soft Yoga, etc - Watching movies - Quiet social life (having relaxed exchanges with people in a quiet place) This is what has brought me to become as passionate about travel as I am. Traveling is the best way that I found, that interests me, to achieve this. CONSEQUENCE IF OVERDOING / NOT RESPECTING THE LIMITS The consequence of doing too much is very difficult to explain. It is much more than just being “tired”. My health sends me all sorts of negative messages. There can potentially be an important difference between the days or weeks when I am feeling well and the ones when I am feeling less well. I sometimes during a few days or weeks feel well enough to want to say that my illness is not a big deal. I am never able to accomplish many things, but there are days when I am relatively happy about what I did. When I am feeling particularly unwell I have to think about the good souvenirs to keep myself motivated that there will be more good moments in a few days or weeks. Before I found a balance, there existed days when I even had difficulty finding the mental energy to answer short messages and my number one objective was to kill time by going walking and watching basic movies I had already seen. Neuro fatigue is much more than just being tired. There are all sorts of effects on how you feel that are difficult to explain. Very difficult to find words that describe how I sometimes feel. It varies from time to time and is difficult to find words. Sorry, but "Feel like Shit" is sometimes the best possible way of saying it. I need to take long breaks between activities. As soon as I do a bit too much my body begins to live this like stress and there are many consequences. The most important consequence is that my sleep is affected and this leads to a viscous circle. Due to the stress my body lives it is very difficult for me to undertake siestas to get rest and become more productive unless I am completely overdone. The other very important consequence is that my digestive system becomes less performant. THE FULL LIST OF REMAINS : Am luckily capable of doing everything almost like before. - am however very very limited in how much time I can dedicate to things. Very quickly get tired during day especially if working behind computer, driving, etc. Anything that requires concentration is tiring. Neuro fatigue is much more than just being tired. - the more I work, the less well I feel. - sleep is affected, fragile and irregular (very related to how much I do). There are days when my sleep was so bad that I just look forward to the next day with hope of having had a better sleep and therefore a better day in front of me. - my body easily gets stressed (when I do too much). - my daily timing is no longer adapted to having a social life with certain people. I rarely wake up later than at 6 am (often earlier) I therefore also need to go to bed early to have a real restful night. Because of that I become hungry for an early lunch and it is most importantly complicated for me to go to late dinners. When on my own I on average have lunch around 12:30. I can occasionally tolerate waiting until around 13:30 but start becoming very nervous about it. I normally have diner around 18:30. I can occasionally wait until 19:30 start getting stressed about it past that time. I have tried all sorts of things to make me sleep a little longer etc to become more relaxed about it. According to many sources that has to do with where the sun is positioned. We are all sensitive to this, but certain people much more, in particular people with relevant illnesses. - often sensitive about what I eat. Some foods have become difficult to digest and some affect my sleep. This definitely also depends on how much I have over done. At some point, the nutritionists made me become paranoid by making the list of things that are not good for us / that we should avoid. - very sensitive about everything ! The things that do me good I give a lot of importance to and the things that harm me I push away strongly (was already a sensitive character before but even more now). - there is regularly a lot of noise in my brain = Tinnitus = a perception of noise ringing in the ears. - very sensitive about loud sounds (loud music, etc). - when not feeling well it is difficult to control one's emotions. I am regularly unable to control expressing my feelings of the moment. - was regularly a bit depressed at the beginning -> it became less and less the case. I during the past few years have not felt it. - memory of names and words rarely used -> Need to repeat many times to remember a new word (about 50 times to begin with, at a certain rhythm, and then need to repeat often enough not to forget it). - scared of heights, get seasick or carsick. Much much more than before, especially when tired. One of the most difficult things when you have an illness such as mine is that it is something invisible and completely unimaginable. It is so imaginable and complicated to understand that that it even took me years to truly understand it. Because there are moments that I feel better that others there are still now moments when I think it will be possible to find the energy to achieve something. I know what my health wants me to do, most importantly what it wants me to stop doing. What my body ideally would like me to do is to go live in the countryside and not be very active. I should not do much except simple things that do not use all the energy "my beautiful broken brain" is seriously over consuming. I am just very far from prepared to abandon doing the things I so love doing. I have been constantly pushing myself to the limit by doing more than what my body and mind accept that I do. I am paying for this in several different ways. I now have so many dreams that if I could work 12 hours per day 5 days per week and take two months of vacation per year during one hundred years it would still not be enough. I am not able to spend time doing nothing (few people can). I sometimes wish I could find a very simple occupation that motivates me and my health would better accept. This explanation of the remains of my illness is a relatively complete list. It is however very difficult to truly explain the fundamentals. How I feel varies from time to time. For some reason, I was relatively stable during the first couple of years. I then went through phases when there were constant changes. I sometimes felt relatively well during a few weeks and then I felt unwell again during a certain time. There are moments when I sleep better than others. I try to find reasoning but it seems to also be related to inner cycles my body is living. Better sleep in general logically makes me have better days. However, this is not always true : I lived moments when despite not having slept a lot I succeeded to accomplish quite a lot of things. I also went through phases when my body found ways to make me sleep a lot : I however was unable to get much done during the day. The medicines, healthy foods, therapies, etc, I undertook definitely had effects on me. Many were very evidently identifiable. Some however are difficult do associate the effect it has (if any). The ones that strongly influence me (negatively) I can easily identify the effect of. What does not strongly influence me is difficult (if not impossible) to identify because I have constant ups and downs and there are always many factors to take into account. Is this something new to me ? Yes, definitely ! BUT, not completely. After completing the above list of remains of my illness, I realized that I was not completely new to me. I already lived many of the difficulties before, just much much less intensively and absolutely possible to live with although challenging. Before my illness I already had many difficulties. I had difficulties of all kinds at school, at university and at work. It was very difficult for me to truly concentrate. I was unable to undertake intellectual work for more than about 6 hours per day. At university I started studying on the first day of the term at this rhythm where as most other students started cool and then studied more than 12 hours per day during the last few weeks to prepare the exam. I also had a bad memory, it was difficult for me to remember things. I had sleeping problems until my late 20s, regularly lived a bit of depression, etc.. During my childhood I had been identified as dyslexic and slightly color blind, but nothing more. I wanted to understand why this is like that. The most important item I have since learned is that I probably have the "Attention Deficit and Hyperactivity Disorder" (ADHD). I learned about it at the age of 39 by visiting someone that had analyzed me during my childhood. ADHD was not yet known (or not well known) and so this was not brought forward. Whether these are the truly the theories to bring forward I do not know and it does not matter to me. The most important for me was to understand the that I was not crazy, such challenges do exist. We are just all differently made. What I have lived has contributed to help me fundamentally understand how complex mankind is and how differently we are all made. It means so much to me based on everything I have learned from it that I do not exclude to one day write a book about this. No worries it will be a short book, I do not have the energy to write a long one ;-) I am already quite sure that I will call it "Happiness; Live YOUR Life and respect other peoples lives". My “second life”. I undertook meetings with other people that have a brain injury. It was very touching to have conversations with people that have undergone something similar and can understand each other. One item we definitely have in common is that we consider to be living a completely different life than before it all occurred. I at first (before understanding the true remain of my illness) called it a second life because I thought I was given a second chance. I interpreted it as a message to listen more to myself and find my path. I now still call it that but because my life has been completely changed. I am living a completely different life. I chose a special date that corresponds to when doctors estimate that the medicine started to have positive effect on me and start bringing me back. Most importantly it is the birthday of one of the 2 coolest godsons you can have (don't try arguing about this fact ;-). It is when I was in hospital since 2 months that two friends introduced me to their son and asked me if I could be the godfather. Several months later I put his birthday on my calendar and realized what it means to me. I have gone through a very long and difficult process related to the illness but also had the chance to live many things I otherwise would not have had the chance to live. I have had the chance to do more traveling than I ever dreamed and had the chance to learn more about many items I previously did not have or take the time to find out about. There were so many amazing things that I sometimes ask myself “are these the most difficult or most amazing years of my life ?”. I do however miss my "previous life". It is about 5 years before going to hospital that I had began to find myself, began to enjoy life and was making progress towards reaching my objectives. I now have so many dreams that I could live 100 more years without getting bored. The remain of the illness however makes me probably have to eliminate most items from the list. I have not completely given up finding some ways to at least partially improve my health. I plan to continue trying things. Professionally I could probably be possible for me to go adopt a very simple 50% job. I must admit that it is very difficult for me to imagine this considering my education, professional experience, the dreams and the ambitions I had before. I have not yet found such an idea that would in any way motivate me except what I have been undertaking now. I keep the hope that one day I will find a way to make my living, become independent and have a normal life despite the remain of my illness. I am very lucky to have a very good what I call "insurance", but becoming independent is one of the two most important items I want to achieve. I am not yet prepared to give up all my objectives and dreams, but I do nevertheless have to be somewhat realistic and prepare myself for what is apparently more likely. I have recuperated much more than doctors expected. There is almost no more progress taking place at this stage (on the contrary). I have met some people that carry such illnesses since dozens of years with more important remains. For more information about Brain Injuries in general, please follow this link : FUNDRAISING :
One of my objectives is to try to raise funds to help people that suffered similar illnesses. Don't know if will succeed considering the fact that I am only able to work a couple of hours per day. Nevertheless, I want to try to make myself useful and try to raise funds to help people with brain injuries similar to mine. I am very lucky to have the chance to undertake what I am doing despite the situation. The goal is to raise funds to support The Encephalitis Society, an organization based in the United Kingdom working in research into Encephalitis Brain Injuries. The society also interacts worldwide with patients that have suffered Encephalitis, providing them with information, essential help and care. Many of the people that carry an important remain lack essentials.
For this reason, one of the objectives is to get as many people as possible to FollowKevin and contribute to fundraising. I will send an email with you once every few weeks to share my pictures, my experience traveling and my story. How you can Contribute
PASS THIS LINK TO OTHER PEOPLE :
= to help enlarge the network of possible contributors. Pass it on to anyone that might be interested in following this trip : - Forward them the email you received - or Send them the link : www.FollowKevin.org
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