ALS patients remain the same amid awkwardness, isolation
 

ALS patients remain the same amid awkwardness, isolation
By Leo Greene, Staff Writer
Article Launched: 12/29/2007 06:22:08 PM PST


Editor's note: Inland Valley Daily Bulletin reporter and videographer Leo Greene has been documenting his journey since being diagnosed with ALS, Lou Gehrig's disease, in August 2006.


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With the diagnosis, everything changed. I stepped out of that doctor's office into a kind of dark comedy of errors.
The faces remained familiar. But the people I knew took on the mannerisms of strangers.

Now that my condition was terminal, many were hesitant to approach. Most who did seemed uneasy or downright spooked. They resorted to clich s delivered with awkward or strained sincerity.

One person would lean in and with a throaty and hammed-up earnestness ask, "How are you?"

I wanted to run. The problem was, many had already beaten a path to the exit.

"It's as if you are carrying something contagious and dangerous," said Jeanne Roy, a Pomona therapist who has worked as a consultant to several hospices.

Many people don't know how to act or what words to use, and prefer not to be reminded of the human condition.

"So they are sitting on all these feelings and don't have a clue as to how to start a conversation with you. So most avoid it," she said.

Not long after


news of my diagnosis circulated, I approached one of my bosses with a work-related question. His eyes widened. His torso stiffened. It was as if I were a Mack truck about to run him over.
I don't blame him.

However, I didn't audition for this part. I wanted out of this role. The problem is, when you're in white face and sporting a big red rubber nose, there's no two ways around it. You're a clown - and a lonely clown at that.

"ALS is a disease of isolation," said Val Waterman, the Extra Hands for ALS Southern California Program manager.

Extra Hands is a national organization providing student volunteers to help people with ALS, or PALS as we call ourselves, with household chores.

As this disease progresses, PALS make fewer excursions and are increasingly cut off from the world, Val said.

We go from driving a car to driving a wheelchair. We exchange restaurant cuisine for green glop in a feeding tube. Bathing and dressing require people to assist us.

When transferring to a car seat goes from difficult to impractical, those few who can afford it purchase wheelchair vans. Even when we can get out, it's never easy.

Caregivers are burdened not only with providing care, but also with jobs outside the home, keeping the home running, caring for other family members and myriad other responsibilities. Spending the hours necessary to get the PALS out becomes an ordeal.

"It is a big sacrifice for the caregiver whether spouse, adult child, sister or brother to venture out with their PALS," Val said.

Socializing goes by the wayside. And those with whom we might have socialized can't bring themselves to visit.

"I've heard friends and relatives of PALS say things like, `I just couldn't bear watching so and so deteriorate,' " Val said.

When PALS lose the ability to enunciate and eventually to talk at all, social interaction tends to decline. Electronic communication devices can help to some extent. But they can't keep up with the usual flow of conversations.

Some people assume that if the PALS don't talk, they also don't hear. Sadly, visiting friends and family members begin talking around them and not to them.

"Sometimes it's difficult to comprehend that the person inside this unfamiliar body is still the same person on the inside. Just as smart, charming and funny as they were before ALS," Val said.

Having said all this, I would be remiss not to mention those special few who are comfortable enough in their own skins and empathetic enough to reach out to the terminally ill and be themselves around us.

While I hope this column might motivate some of the squeamish to get over it and visit their friend or relative with ALS or some other terminal illness, I also encourage PALS to reach out.

Jeanne Roy said that when she was going through a difficult period after a family tragedy, she would at times take the initiative.

She would tell people, "We can listen to music together or watch a movie. Just get your butt over here! I'm lonely! If you're scared. it's OK. Let's be scared together."

We're not asking for much.

As for me, I'm still the same person. I like talking politics, football and books.

And if you're inclined to just drop in, please do.

However, you'll have to make the coffee.

l_greene@dailybulletin.com

http://www.sbsun.com/news/ci_7839041