Let there be light

Donated Christmas display reflects on resident’s struggles

The lights decorating the bushes at the home at John and Kim Pijanowski in Fayetteville are not the couple’s first forays into holiday decorating. Kim had put out some of the netted variety, the kind that drape over bushes and trees and require minimal effort.

Even that was too much for Kim Pijanowski this holiday season.

About this time last year, she was diagnosed with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease.

The disease affects about five out of every 100,000 people worldwide, according to the National Institute of Health’s online medical encyclopedia. When it does strike, the prognosis is almost always grim. About one in four patients survives for more than five years after diagnosis, but death often occurs within three to five years.

Although Kim’s diagnosis came just a year ago, the disease’s symptoms have progressed rapidly.

Already, she relies on a mobility wheelchair, and her speech is slurred.

Those challenges can’t get in the way of Christmas, however.

FROM PROGNOSIS TO PLAN

ALS was first described in 1869 by a French neurologist, Jean-Martin Charcot. But the national ALS Association credits New York Yankee baseball slugger Lou Gehrig for bringing national attention to the disease when he retired from the game after his diagnosis in 1939.

The disease manifests itself by affecting nerve cells in the brain and spinal cord. Essentially, it cuts off the nourishment and control system between the brain and the muscles. Even as a diagnosed person’s brain maintains function and perceives the five senses, muscle control wanes as ALS progresses.

In its later stages, it restricts all voluntary muscle movement, making simple tasks such as swallowing an ordeal.

Recent advancements in treatment include a new drug that moderately slows the progression of ALS, says the ALS Association.

But even so, there is no cure for the disease.

Kim, shortly after her diagnosis,pondered a future with ALS in a blog post she shared with friends.

“Some people get 10 years, and Steven Hawking has had 40 years with ALS. I refuse to accept a term limit. So, while my family and I are ready to prepare for the short term, we also believe that I have every right to believe in the long term,” she wrote.

DONATING SPIRIT Someone in her neighborhood recommended the Pijanowskis, who moved to Fayetteville several years ago from New York, for a unique Christmas donation.

Each year, Christmas Decor of Northwest Arkansas gives time and services to a local family with special circumstances. On the strength of their neighbor’s recommendation, the Pijanowskis were selected as this year’s recipients.

The decorating job the workers from Christmas Decor completed for the Pijanowskis is similar to ones they’ve installed all over Northwest Arkansas.

The company is also part of Trent and Amanda Ragar’s lawn care business, but the employees substitute as elves during the Christmas season. The all-LED lighting display went up in about two hours. The scheme incorporated white lights on the roof and a series of green bulbs on the bushes, the tree in the front yard and around the windows of the home.

As the workers moved about the front lawn of the home and up on its rooftop, Kim remarked it would be the most decoration her home had had in some time.

“This will be a lot more elaborate than in the past,” she said.

The lights will go on daily at 4:30 p.m. and off at midnight. A timer controls the display, requiring minimal effort from the family. They’ll be busy with Christmas, after all.

AGLOW AT CHRISTMAS Since receiving her diagnosis late last year, Kim estimates she’s had about 45 days - of about 400 - without a house guest. Particularly, that figure includes visits from her mother, Barb Kathen, who helps take care of Jack, the Pijanowskis’ 3-year-old son.

With or without the lights, Jack is excited about Christmas, Kim said, perhaps the first he understands and anticipates. He’s been watching a lot of the Christmas specials on television, and he’s ready for the holiday toarrive. Dozens of guests will at the Pijanowskis’ newly lighted home in Fayetteville.

Previously, John and Kim went to upstate New York to see the family members they left behind when they moved to Fayetteville, but her motorized wheelchair prevents her from flying. John, an educator, joined the faculty at the University of Arkansas in 2007.

Kim was at work on a Ph.D.

program at the university but abandoned her studies shortly after her diagnosis.

Kim says she could complain about many of the ways her life has changed. But that won’t do her any good. Instead, she takes care of Jack to the best of her abilities and types on a computer with the help of a wrist weight that helps her hold her weakening hand above the keys.

“My thoughts are always way ahead of my hand,”she said.

That’s one of the challenges and gifts of ALS - even as the body deteriorates, her mind remains sharp.

“I’m not sorry,” she said, slowly but surely. “I don’t wish ALS on anyone. But it’s so overshadowed by the love that’s fallen into my life.” She feels great, she said.

Hours of sleeping - fatigue is a common symptom - have recently been replaced by hours at the gym, usually with her swimming.

That will help keep her muscles strong even as they try to fail her. She has reasons to stay strong - she’s convinced that love needs to be shared. She equates it to what Nelson Mandela did when he was imprisoned in South Africa. Jailed for years during the apartheid era, Mandela made friends with the prison guards where he was kept.

“I really feel like I am in prison with my mind, and I’m using it as an opportunity to bring light into any place of darkness,” Pijanowski said.

A little bit like the lights on her house, perhaps.

Style, Pages 25 on 12/20/2012

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