ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Friday, May 8, 2009

Rekha Basu Continues To Teach Us About ALS

This beautiful piece is about nurses. It also gives insights into ALS that only one who has been there would know. Please read on. This column says much about ALS.

http://www.desmoinesregister.com/article/20090508/OPINION01/905080355/-1/ENT06

From the DesMoines Register, May 8, 2009, Rekha Basu...

On May 3, at a ceremony in Hy-Vee Hall marking the start of National Nurses Week, 100 Great Nurses of Iowa were honored. I nominated one of them. This is an edited version of the remarks I gave:

When my husband, Rob Borsellino, was diagnosed 4years ago with Amyotrophic Lateral Sclerosis, we went from minimal interaction with the medical system to an increasing succession of appointments and interventions. There were the neurologists and the pulmonary specialist, the nutritionist and the occupational therapist, the respiratory and speech specialists. There were the hospital emergency-room visits, and ultimately there was the hospice.

When my husband, Rob Borsellino, was diagnosed 4 years ago with Amyotrophic Lateral Sclerosis, we went from minimal interaction with the medical system to an increasing succession of appointments and interventions. There were the neurologists and the pulmonary specialist, the nutritionist and the occupational therapist, the respiratory and speech specialists. There were the hospital emergency-room visits, and ultimately there was the hospice.

In every instance, nurses were the first point of contact and the last one, the gateways to the medical establishment and the buffers from the confusing, depressing, frightening world of serious illness.

The one common denominator was how little they had to work with. The illness was progressing rapidly, and every time we saw them, things had gotten worse.

Caught up in the daily demands of care-giving, I grew to depend on the network of nurses we interacted with, not just physically but emotionally. Often, I took my cues from the simple matter-of-factness with which they handled Rob. I watched them balance being part of our private lives with trying to stay unobtrusive. I
marveled at how they kept a game face even as they developed their own relationships with Rob, and grew to care for him as a person. Only once, sensing the end was near, did one break down around me.

During that time, one particular nurse entered our lives. We met her in a hospital emergency room after Rob had taken a fall and my sons, who were home, called an ambulance.

Sensing our family needed more than piecemeal visits to specialists, she became our primary line of defense. From then on, there was never a time - not one -when we needed help with something and she wasn't there, even if she was on vacation. It could be rushing to the house or consulting with doctors on the phone, or sleeping over when things were especially rough, or even finding something Rob loved, like sushi, and making sure he was well supplied with it.

Rob grew to depend on her cheery presence. It simply made him feel safer when she was around. And she went beyond caring for him to looking after me, my children, my parents and my mother-in-law, even fighting our battles with insurance.

There were some wonderful doctors, too, but also some who felt we should resign ourselves to Rob's impending death, and saw no point in aggressively treating an infection to gain just a few more weeks of life. It was the nurses - it was Deb - who understood the preciousness of every day together, and encouraged us to keep fighting every step of the way.

Fighting is important, even in the face of a terminal illness. It's the difference between feeling powerless and having some sense of control over your own fate.

Of course, there is an intrinsic paradox in the challenge of staying hopeful when there is objectively no cause for hope.
The nurses somehow balance this contradiction, keeping you realistic but forcing you to be optimistic.

I've written about the lack of due recognition and pay nurses get. But until the firsthand experiences of recent years, I had never viscerally understood how critical a part of the equation nurses are. Time after time, they are the heroes and heroines in a story plot they had no hand in writing, but which they must make the most of.

Nurses helped Rob remain optimistic and maintain his sense of humor and his joy of life. And he died feeling truly cared for, and even loved, not just by the community he had built over the years, but by those who came to know and look after him in his illness.

Because nursing, at its best, is work of love.

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