In his book Twenty-five Years After, Elie Wiesel wrote: How
is one to tell? How is one not to tell? He also said, That
words are not adequate to describe this experience. He thought
that if the Holocaust survivors were silent and did not talk, the silence
would have been so overwhelming it would make the biggest impact.
Of course I cant compare my personal present experience to the enormity
of the Holocaust. I do know that feeling too! I was part of that catastrophe
also. Somehow maybe because I was young I did not feel as hopeless and
helpless as I feel now. ALS robbed me of my ability to speak.
I have a choice – to be silent and not communicate or to write and share
my thoughts. Writing instead of speaking is so difficult, tiring and frustrating.
Sometimes I feel, whats the use? Nobody understands anyways. I
myself have difficulty remembering that I cant talk or walk, that
a little bell keeps me connected to the person that takes care of me.
Every morning when I wake up I am surprised that incoherent sounds come
out of my mouth instead of words. When I forget and open my mouth to talk,
I hear, I cant understand you, and I am handed paper
to write on. I feel like screaming. Dont talk to me! Dont
ask me questions. Let me be silent.
Talk about yourself. Keep me in touch with the world.
I have learned a lot from my frustrating silence. It makes people uncomfortable
and you find out who your real friends are.
You learn that people who have something to say will find a way to communicate.
You learn to listen to other peoples silences. I think more before
my pen touches the paper. I am too tired to waste words. By the time I
finish writing an answer, the question becomes invalid.
In my silence I gain perspectives I never knew.
My head is so full of ideas, opinions and memories that are screaming to
come out. Speaking is faster than writing. When I write instead of talk,
people dont have patience to read. They want immediate interaction.
Some anticipate my answers and make false assumptions about my feelings
or wants. And you feel like screaming again,
I am alive. Dont speak for me! I can speak for myself, one
way or another, but slowly. Be patient. What might be good for you is
not necessarily good for me. Dont anticipate my wishes. Let me
make decisions about my needs. Leave me the little control I still have
and my dignity.
It is hard for me to accept the reality so maybe complete silence is the
answer for me. Or maybe people need to know I bear witness to a devastating
illness physically and emotionally.
So I will talk as long as I can and whatever way I can. I will be silent
when my frustration overcomes me and sometimes I feel close to that moment.
I think that my personal present experience is the closing end to my gift
of life so many years after the Holocaust. What a price to pay twice!
Yet what a gift! Filled with the love of family, children and grandchildren.
Tears and laughter, books, music, flowers, hard work and even a married
In tribute to Funia and to share her valuable insights, Qualicare Franchise
Corporation is featuring this and a number of her other articles in our
Homecare Library. In addition we have prepared a booklet entitled
The Way I Am: Living with ALS which has assembled all these thoughts and more. This can be viewed on
You may also order free copies of the booklet by filling out the form on