"New social networks are my window to the world"
We met Mikel on the Internet, where he spends time giving information about the disease that he has been living with for six years, amyotrophic lateral sclerosis (ALS)
The Adela association, of which Mikel is a member, has presented a project to the customers of Caja Navarra. We sent him an e-mail and he replied the next day. His signature includes the phrase "Nothing is impossible if you turn your troubles towards the sun", along with a Smiley!
Two years ago you started writing your blog ‘Life's Surprises' . How did that come about?
This disease brought upon a lot of feelings, doubts and frustrations in my mind and I needed to get it all out.
As well as the blog, you post photos, videos etc. on Facebook. With the limitations that your body is imposing upon you, do social networks help you to communicate?
Despite only using the mouse, it's clear that new social networks are a window to the world for people like me who have reduced mobility. They allow me to keep up-to-date with news related to ALS, to share opinions with other affected people and their relatives and raise awareness about this cruel disease.
What message do you want to send to people who read your posts and what message would you like to receive from them?
That ALS can strike anyone and can destroy lives. That's why it's important to make the most of every minute of every day and live them fully. I also want to raise awareness about the need for more research, because the disease is fatal. I receive a lot of love and encouragement, which help me a lot on my bad days.
What is it like living with the disease and its degenerative process on a daily basis?
According to some doctors, ALS is the harshest disease in the world. You are completely aware of the degeneration and loss of your body. You see your functions die close up. Every day you have to adapt to a new physical limitation and the brain is not prepared for so many changes in such a short time. That's why I have my good days, my bad days and my very bad days...
You live with your wife and daughter. How do they cope?
My daughter Anne, as she is 4 years old, has always seen me sick. She has known me walking, sitting in my chair and now almost paralysed. For her it's normal, she supports me as best she can and always helps me to carry on. The problem is that she doesn't know about the end of this disease and when it's time to say goodbye it will be very hard for both of us. My other rock is Rosana, my wife. She's always by my side and supports me at difficult times. She's a strong woman, because as well as having to work, take care of Anne and me, she still has the enthusiasm to fight to survive. She's the real reason why this all works.
What would you say to somebody who had just been diagnosed with ALS? That there are only two options: live and fight with dignity or stay sitting and wait for the end. It's that hard, but fighting is the best option.
What dreams do you still have to fulfil?
I have a lot, but I would really love to visit New York.
What's a day in your life like now compared to before?
Now, in the morning I use the computer a little. I read online newspapers, read and answer e-mails, read other blogs by affected people and friends...I try to distract myself. The afternoon is very family based: the park, walks, chores. Before, I was an industrial draughtsman. I used to love going to work, because there was a great atmosphere with my colleagues and friends. I also used to do a lot of sport, from triathlons to even running the Berlin marathon with my uncle. And I had a motorbike. They were good times...
What was the last thing that made you laugh?
As usual, something that my daughter Anne did. Although Rosana is also very funny when she impersonates me. Laughing is something that's good for me.
What are your interests now?
Nowadays I have very few, as I'm paralysed. I love horror films or anything by Tarantino and good football or basketball matches. What I like is doing anything surrounded by my family.
The Adela association campaigns to help people affected by ALS (4,000 people in Spain). What kind of contribution does the association make?
We receive very important services like physiotherapy and psychology and they have a lot of technical aid for sick people. Associations are essential in order to have a dignified life. As well as the ALS associations, there is also the Platform for people affected by ALS , which is a large group of sufferers and their families and friends who have been affected by ALS. All of them with a desire to do something more than talk, determined to ‘take some action' to get new experimental treatments applied (using stem cells for example) that could cure the disease or at least stop or slow down the degenerative process.
What would you like to hear regarding the future of ALS?
I know that it's very late for me, but I would like a cure to be found, or a way of halting this dreadful disease, because nobody should have to suffer this hell...