Monday, February 10, 2014

Better Fed than Dead

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 person’s wishes.

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.

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