Sunday, November 29, 2009


My legs don’t work anymore. The result is not only that I cannot walk, but also I have difficulties that I did not expect. If I lay in my bed I cannot turn, I cannot get out of bed. I lay helpless immobile. And if I want to turn I need to wake my husband to help me. In the morning I need help to get out of bed into a shower / toilet chair. Someone has to push me into the bathroom and put the chair over the toilet. Then into the shower. I cannot wash myself: because I cannot reach the lower half of my legs and my feet. Washing my hair is becoming heavy, because my arms are tired and heavy. Washing my back is impossible. Getting dressed: I cannot pull my pants. Putting on a shirt or pull over is difficult. I cannot put my sock and shoes on.
Getting up in the morning is the most difficult part of the day. Once I am in my wheel chair it will go better.

My arms are getting weaker, but they are still working o.k. Also very annoying even frightening is that I cannot cough properly, or blow my nose, or even sneeze.

So this body is not working properly and I am really fed up with it. But … I am still there inside and my sences and my brain are working o.k. That’s why I still can:
Feel: loving hands on my shoulder, the sun on my skin, the wind in my hair, my cold feet.
See: How beautiful nature is, trees with their bare branches against the blue sky; A ballet performance I went to with my husband and my daughter, I saw people using their muscles in an incredible way; my husband who cares for me, my daughters when they are visiting me; birds in the garden or near the sea, and the big freight ships on the river Schelde, heading for Antwerp or the North Sea.
Smell: The nice food my husband cooks every day; the dung on the farm land (funny I know, but I always liked that smell), the smell of horses, roses and the sea. No more perfume though for me, because it makes me cough.
Taste: I am lucky that I can still eat everything. I love to eat nice things. In December we planned two dinners with family and friends. Oh I love those evenings, so I am going to enjoy it!!
Hear: music, music, music, birds in the garden, talks with family and friends and the little steam train that rides near our house.
And I can talk and sing.

And my thoughts are still there. I can read books, invent solutions, watch T.V. do computer games and fantasize and dream. In my dreams I still can walk and dance. When I was a child I often dreamed that I could fly in my dreams. If I do my best those dreams may come back.

I have to accept that that’s my life now. And I try!!


  1. Lianne, I wanted you to know that you are and will continue to be in my prayers. Although I can't begin in imagine how you feel--and cope--with ALS, I do know what it is like to watch someone you love lose power and ability inch by inch because of this disease. My brother Paul was diagnosed with ALS last April and is now totally wheelchair bound with only slight movement in his right arm and none elsewhere. His voice has now started to become affected so a major concern for him is how he will communicate because he is no longer able to use a computer. But his spirit and good humor continue to be alive and well and for that I am most grateful. Your listing of what you can do and enjoy reminds me of him.

  2. I just can hardly wait for Jesus to come back and put an end to this sickness and disease...and He is coming again.
    Your newest follower will pray for you.