My name is Funia.
I am 76-years old. I am a woman with grey hair. A mother, a grandmother,
a wife and a teacher with a diploma from Seneca College in Early Childhood
Education and a Bachelor of Arts Degree from York University. I am Jewish.
I lived through the Holocaust. The Nazis killed my entire family. I am
also an immigrant to Canada. I struggled very hard to survive and make
sense of the destruction and chaos that I came from at age 20.
I would say I succeeded without a big fanfare around me. I touched many
lives and many lives touched mine. I read many books, listened to music
and saw many plays. I traveled a lot. I speak five languages. I raised
a beautiful family with values nobody can complain about. My life was
not a bowl of cherries, but a bowl of life. I worked hard. I played hard.
I learned fast, catching up on the wasted years of my youth.
Right now I cant walk. My speech is impaired. I am being driven
in a wheelchair. By all these implications, I am deaf, blind and my mind
is not working. My mind is working. My memory is good. I can hear and
see. I listen to music; I like flowers, perfume and hot showers.
So what is wrong with me that they dont talk to me but to the person
next to me? Can SHE sign this? What happened to her? Ill
tell you what happened to her – SHE has ALS, diagnosed a
few months ago.
A terminal illness, cause unknown, that destroys muscles. No cure available.
The brain stays intact and what was there before is still there. I did
not ask for it. I never thought it would happen to me. But it could happen
to you, and you, and you. I did not know that I had so many muscles that
control the body. What is it like to live with ALS for a vibrant, independent,
creative woman? It is like being on death row waiting for your death sentence.
At any time one of the muscles that controls your breathing might stop
functioning. Not to be able to communicate is my biggest despair. Who
knows what comes next.
I cherish life.
I find beauty in sunsets and sunrise.
I love flowers.
I like children and their innocence and charm. I like a good joke and I laugh despite my difficulty to breath, but how
I would love to repeat that joke. I have so many things to say, so many
stories to tell about people that crossed my life. I have to give that
up because it literally takes my breath away.
So I live from day to day, dependent on help to exist. Soon I will have
to make a decision about the quality of life I want for me and consequently
for my family. I hope I have strength enough not to give in to the difficulties
of the moment, and die in dignity. I pray that I will be fortunate to
die in my sleep. Some days I am grateful that I have the good luck to
be in my own home. Some days I am so angry and desperate that fate handed
me such a lemon.
Maybe my courage and strength havent been tested enough. Maybe for
the privilege of meeting gentle and caring people. Maybe to experience
the seeds of love, compassion and caring I have planted in my childrens hearts.
I have not found an answer yet. I probably never will. Life is full of
unanswered questions. Ironically for the first time in my long life someone
is taking care of me instead of me taking care of myself and everyone
else. I was alone since I was 15. I have not experienced that care and
love of parents, siblings and other relatives. I had to be an adult at
15. I was never a teenager or a young adult. I had to grow up fast in
order to survive. I do care and feel about others and I treat others with
the respect every human being deserves.
Treat me with respect too.
In tribute to Funia and to share her valuable insights, Qualicare Franchise
Corporation is featuring this and a number of her other articles in the
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