Introduction by Andrea Nathanson RN Qualicare Franchise Corporation

I met Funia many years ago, just a few months before there was officially
a Qualicare. She was an uncommonly talented person “ active in the
arts, in education and in her community.

She was very creative, very intelligent and very very strong-willed. She
made it clear to anyone involved in her care that she was not to be pitied
and not to be ignored. While ALS may have robbed her of her speech, it
had not been able to take away her mind and, more importantly, it had
not been able to take away her heart.

Although there were assistive communications devices that could convert
typed words into synthetic speech, she insisted on using the one part
of her body that ALS had not been able to impact which was her right arm.
This allowed her to write down her thoughts on pieces of paper. It was
a slow process but she insisted that we wait for her. She did not want
us to finish her sentences, because each snippet of her thoughts had profound value.

I encouraged her to write – about how she felt, what made her happy, what
made her unhappy. This she did with great deliberateness and great insight.
What follows are a series of soliloquys about her self-image, her caregiver,
her husband and family, her outings.

They are compelling. They are inspirational and uplifting. There is not
a day when I dont think of her or a week when I dont read
what she wrote.

In fact, Funias insights have become part of Qualicares DNA
“ the deep-seated belief that every person we provide care for is
a complex treasure of thoughts and feelings.

Heres the introduction that she wrote:

I would like to share my personal experience with this illness that I have
summed up in the following essays. My goal and purpose is to familiarize
the people in the medical profession, caregivers and public in general
with this devastating illness and its effects on the person and their
family. I hope that with awareness and research, a cure can be found.

In addition, I would like to change vocabulary like terminal
illness to serious illness. Human beings are all terminal.
All of us must die one day. Terminal implies no hope, no
life, only death predicted by professionals who play God. Yet it is possible
with great effort and support to live each day to the fullest of ones
ability – to light a candle each day, instead of cursing the darkness.
It is possible to laugh and cry, to love or hate. We can be open to new
things that we might learn each day, and thus enrich our soul and mind.
We can be alive, while we live.

Eventually we might have to make a choice about the quality of life that
is appropriate to our beliefs, expectations and circumstances. Not an
easy task!

She died a few short months after writing these words.

In tribute to her and to share her valuable insights, Qualicare Franchise
Corporation is featuring a number of her articles in the Homecare Library.
In addition we have prepared a booklet entitled
The Way I Am: Living with ALSwhich has assembled all these thoughts and more. This can be viewed on
our website.

You may also order free copies of the booklet by filling out the form on
the website.

Download Funia’s Story – Introduction