The following article was written by Cathy Ludlum and published by the disability rights group Not Dead Yet on their blog.
By Cathy Ludlum
We in the disability community have a stronger appreciation than most people
of the opportunities technology can bring. Power wheelchairs and vans offer us
mobility. Voice-activated software and screen readers unleash the power of
computers. Environmental control systems allow us to manage things around the
house, like opening doors and answering the phone.
But some technologies make it possible for our lives to continue so that we
can participate in these activities and more.
Feeding tubes are a lightning rod of controversy throughout our society. People go to court over having them taken out or kept in. There are tearful
discussions about life and death, and quality of life. When someone cannot
speak for him- or herself, family and medical providers speculate about the
Typically, advanced care planning programs, including National POLST Paradigm
affiliates, describe the risks of tube feeding while minimizing or ignoring the
benefits. How can people be expected to make a decision about this
life-sustaining technology when so much of the available information is biased? Clearly, more awareness is needed.
People are always shocked when I say that the quality of my life improved
dramatically when I got a feeding tube. They are expecting to be supportive
around my feelings of loss from the progression of my disability, inability to
enjoy table food and eat socially with friends, and the physical discomfort of
having a tube in my belly.
I’m sure there are people who have those experiences, but for me getting a
feeding tube was a profound relief.
I spent 20 years actively at war with eating. And although I have never felt
any shame at my inability to walk or dress myself, my swallowing difficulties
were different. I was embarrassed about being a slow and awkward eater. So for
most of those years, it was a lonely war.
For many people with swallowing problems, aspirating food into the lungs
creates constant infections. That was never my issue because I unconsciously
held my breath most of the time I was eating. Every bite had to be swallowed
about 10 times before it would go down. Then I would come up for air and do it
again. And again. And again.
Approximately four hours of every day were lost trying to eat enough to keep
me alive so I could do the things I really wanted to be doing: living on my own,
managing my support staff, working, playing, learning, contributing. Often, I
was hungrier at the end of a meal than I was at the beginning due to all the
energy expended trying to coax food through my ever-weakening throat. And the best part? Bits of food would lodge partway down and stay there for
days… and rot… leaving a terrible taste in my mouth.
Do you seriously think I was sorry to give this up?
I might have starved to death because of my lack of knowledge that a feeding
tube was even an option for me. Fortunately, in 1997 I was hospitalized for
something else and it was suggested that I get a feeding tube. I was actually
excited. If I had known how liberating this step could be, I would have done it
in my 20s instead of in my 30s. I am 51 now, and thankful for all these extra
years of good health and greatly reduced stress.
February 9-15 is Feeding Tube Awareness Week, which is an opportunity to
spread the word about all the children and adults who are living healthy and
active lives with tubes. Some people use this technology on a permanent basis;
others use it to bridge their recovery from illness or injury, or while their
digestive systems mature to the point where they can transition to typical
food. Please check out this wonderful Feeding Tube Awareness Week
Video, 2014 from the Oley Foundation.
The Feeding Tube Awareness Foundation strives to raise awareness so that
children who are tube-fed enjoy increased acceptance in society and parents have
greater support in their care. Their web site is here.
No one is saying that feeding tubes are appropriate for everyone. Every
person and situation is different. But for many, a feeding tube makes life
possible, and that is worth celebrating this week.