Tanja Willems’ story

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Just another day in January 2009... outside, a thick blanket of snow... unsuspecting, I decided to take my son to school on our sled. On the way back, I noticed my right foot’s grip in the snow had weakened. Many scans and tests later, I was sitting at the neurology department of the University Hospital Antwerp where they told me my diagnosis: a tentative (doubtful) ALS.

ALS? ... Both my Prof. (Dr de Jonghe) and my community nurse (Ms Iris Smouts) eventually tried to explain to my partner and me what we should and shouldn’t expect and what would remain unclear. The University Hospital Antwerp also told me about the ALS League. One day, I started to feel the need for an active wheelchair, but given the uncertainty of my condition’s progression, I was unable to apply for one. After getting in touch with the ALS League and having a pleasant talk with them, I left with a borrowed active wheelchair. How wonderful there are people like them!

Now, three years on, I am fully dependent on my wheelchair, but the rest of my body still functions properly, and it’s the PRESENT that counts! I still find happiness in the same things as I did before I fell ill. I try to focus on the many blessings I still have. Besides my partner, my children, my parents, my family and my friends, I also still have my hobbies, like painting, reading, clay modelling, going on city trips, visiting museums, and even camping. With the right support and sufficient rest in between, I intend to go at it for as long as I can. Besides all that, I still try to do my household chores, except things like scrubbing floors and cleaning windows. Even though my share of the chores has reduced, it gives me great pleasure to still be able to take care of my family.

I am now 44 years old, and of course there are moments where I feel deeply saddened and angry. It hasn’t always been easy on the people closest to me either. 44 is too young to have to give up on and alter your dreams. To change and discover again what is achievable, everyday again. That is my challenge, to also make it bearable for my loved ones. I especially want to keep being me, to not be swallowed up by this disease. For me, it isn’t as much about what this disease is, as it is about how I can deal with it in the best possible way (even though it has been a very difficult experience).

The spring sunshine is still as warm as it was three years ago... my children’s laughter is still as beautiful... and love is still as promising... Life is there to be lived. Even in the darkest days, you can still have those goosebump moments from utter joy. It is therefore important – even with a disease like ALS – to create those moments in the here and now to slowly savour with your loved ones.

- Tanja.


Translation: Katia Ombelets

Source: Nieuwsbrief 156 – April, May, June 2012