As a child, I had a plan for my life.
I would attend university, then find myself a good job, a spouse, buy a house and have my first child at the age of 25. The whole thing, roughly, in that order. There was no other option possible for me. I had goals and I was not going to stop at the obstacles that life would set on my way. This life plan kept me motivated to continue in the most difficult moments but also locked me up in a dichotomous way of seeing things; What brought me closer to my goals was fine and the rest was wrong. I would soon learn that life is not all white or black, especially when one is sick.
I naively believed that the secret of happiness was to set goals and reach them. That is not what happened. When I reached my goal of completing my DES, DEC, BAC and even my certificate, I did not take the time to celebrate this success as my gaze was already fixed on the next step. I did not even go to any graduation ball (no, not even in high school). I have pictures of graduation because my mother really wanted to have some. When I got sick, I had just submitted my application for master’s degree studies in criminology, I was going to start in January 2017. I received a positive response while I was returning to the hospital for my second relapse in December 2016. I had to cancel my registration because of my state of health and the lack of flexibility of the university.
When I had reached the majority of these goals, I set myself new ones: to get a master’s degree, to become a teacher, to run a marathon, to get married, to have children. The same mechanism that had helped me move forward all my life would not survive what life had set for me. Chronic disease has never been one of the options I considered for my future. I was Stephanie the energetic, the hard worker, the runner … being sick full-time did not fit in the picture.
I was quickly confronted with the limitations that the disease imposed. I tried to run in February. My feet were so numb that I did not feel my feet, but my need to prove to my body that it was not the one who was making the decisions for us had taken over. I ran in intervals 2 km, it took me two days to recover but I do not regret anything. I needed to go through this in order to progress in my grieving process.
The marathon was already a hardly accessible dream before I got sick so in my new state, I dared not think too much about it. Without a Master’s degree, I lost two goals at once because teaching became unrealistic. For marriage and children, I am still hoping secretly. Obviously, I had to revise my philosophy of life because it no longer fitted my abilities.
The good news when you’re completely crushed by life is that you can rebuild yourself, one brick at a time, just like the person you want to be.
In front of the fact that life had taken away some of my ambitions, I decided that if I had to rebuild, I could renovate and reinvest everything I had on me. How do you do that? Simply answer this : What would the person I aspire to be do?
I always wanted to have more confidence in me: done. I just have to act like someone who has self-confidence, anyway, people will not see the difference.
I wanted to have a better communication in my couple: done. I take the time to listen and understand what he is telling me rather than prepare my answer. 1 out of 2 times I was going to get angry because I had misunderstood (50% of the times, it is I who is right). This is much easier to do without the stress of everyday life (work).
I wanted a more active lifestyle: done. I kick my butt to move at least 15 minutes a day depending on my current abilities.
And so on … it may seem simplistic but it’s really effective (up until now at least). It’s my thing to be at peace with myself in this time of turmoil.
The demolition has hurt very badly, but I can say today that this stage is now over. All that remains is to rebuild. This is what I do full time these days, rebuild myself, improved version 2.0. It is anything but easy, but I feel it will pay off in the end.
Here is one of my greatest sources of inspiration. The first time I saw this video, I was moved to tears because I recognize myself enormously in this nurse who was diagnosed with MS at the same age as me. It’s really worth listening to.
Stéphanie Buxhoeveden – TEDx talk
https://m.youtube.com/watch?v=zuLOT6GsAxw
«Because I was diagnosed so young, chances were good that I would live with this disease for more years than I ever even knew what it was like to live without it. It was up to me, and me alone to set the tone for those years. I did not want to be a victim for the rest of my life, I saw no good reason to give up on my ambitions, so I took charge.»
Diagnostic: sclérose en plaques... Et maintenant? 