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Helping the less fortunate

Full Speed to Port!

Posted: August 26, 2008 3:33 p.m.
Updated: October 28, 2008 5:01 a.m.
My sister, Cathy Horton Bagnall, recently passed away after a long, stoic battle with Machado-Joseph Disease. Cathy, once active and vibrant, had been reduced by this inherited illness to a life defined by paralysis, wheelchairs and hospital beds.

The weeks before and after her passing have been deeply reflective for us. One night at dinner with Carrie before Cathy died, the thought crossed my mind, "The things present on our respective tables express the disparity our contrasting genetic fortunes have wrought." At our home, our table was graced with the good things of life. Green salads with bright tasty vegetables. Grilled savory chicken. Two pleasant glasses of wine. Hard work and good health have brought us - fortunate lives.

At sister Cathy's home, her scene, while once like ours years ago, had decayed to something starkly different. Her table had become a bed stand, and her life's fortune reduced to a hospital bed. The things on her table were Morphine drops, Adavan, Pedialyte and small cups with straws and spoons. Cathy couldn't eat solids anymore. Fluids were fed to her with a thickening agent so she could take them without choking. Hers was a life where hard work had built a once rewarding life, but an illness completely outside her control had stripped it all away.

Cathy was in the final stages of Joseph's Disease. It's a progressive genetic neurological ataxia, passed from parent to child. Each offspring faces a 50-50 chance of inheriting the mutant gene and disease. Symptoms appear in the late 20s, leading to profound disability, and then to death by mid-life. Cathy lost on the spin of this awful genetic lottery through no fault of her own. Sister Adria and I both got a lucky pass. We don't have it, and we can't pass it on.

Cathy had lived productively and vibrantly - all the way until about 10 years ago. After high school she took up a job at the LAPD Department of Records. She'd do records research for police officers who called in, giving them the facts they needed on duty in the field. She dated, married a policeman for a brief time, and enjoyed her career at work and her family and friends at home. She had constructed what was, in fact, a fortunate and well-earned life.

But despite hard work and healthy living, by her late 30s, the ataxia caught up with her and began its relentless assault. Cathy developed an awkward gait. Jagged hand motions. Slurred speech. First came a cane, and then came the walker. By 51, Cathy's motor functions had deteriorated such that she suffered two auto accidents and the DMV revoked her license. Determined to be self-sufficient, she worked for another year at the LAPD, with coworkers driving her to the office. But soon her speech became so compromised she could no longer fulfill her duties. She was dismissed with reduced retirement benefits and left to face a terminal disease, medical bills, and a $2,800 a month home mortgage payment.

We bought her an electric cart and refitted her home, and for a couple of years, independent-minded Cathy cared for herself, riding around Valencia's convenient paseos - shopping, visiting, and carving out a newly motorized life. But as the disease progressed, Cathy lost her ability to walk or stand at all.

Determined not to burden others, Cathy kept secret that at home she crawled from room to room to get around. After a dangerous fall, Cathy tearfully confided with Carrie she could no longer get by alone. By God's grace and good fortune, we found "Pinkie" - a wonderful caregiver who moved in with Cathy at her home, providing 24-hour care.

Few sufferers of disabling disease have the otherwise good fortune of living in their own homes with constant care, and surrounded with loving family members. In this much, Cathy was indeed fortunate, as her family supported her completely.

Cathy's decline accelerated quickly over the past month. Last week she became fully paralyzed, unable to even swallow. Cathy passed away in her sleep on Aug. 15 at 1:50 a.m. Our family got the call from Pinkie at 2 a.m., and we met and huddled at Cathy's home. The hospice nurse arrived at 3:30 a.m. to declare her passing. The morticians followed at 6:00 a.m. Two dark-suited men respectfully carried Cathy's withered body from her bed to a gurney, and from the gurney to a white van. And then they drove Cathy away and we were left alone in Cathy's empty house. Ataxia claimed another body, but it never claimed Cathy's spirit. Just four short weeks prior, Cathy, by then mostly paralyzed, went with Pinkie by wheelchair to the Town Center Mall to see "Sex and the City." She couldn't move, but she could still see, hear - and moan out a laugh.

Our hearts are forever changed, having traveled that hard road with Cathy. We feel such empathy for the hundreds of thousands of Americans stricken by profound disease and disability - through no fault of their own. Cathy kept her dignity and meaning with the help of a loving family that had sufficient resources. But many either don't have the family or don't have the money. What becomes of these, when their bodies give out - and finances can't keep up? In my younger years, when my father suffered and died of the same disease, I saw first-hand how these people can be warehoused for death, isolated from any meaningful sense of life.

And I wonder, as our national health care debate draws front and center in the coming years, if America, for all her greatness, can't find a way to care less for war and more for its ailing citizens. Cathy served the citizens of Los Angeles for nearly 30 years and was left to fend for herself with a reduced pension.

What about all the others? Can fortunate American share maybe just a little more with our less fortunate? Isn't proper care for our sick and suffering at least as patriotic as this or that foreign adventure? Those suffering fates like Cathy give testimony to our need to rethink national priorities and sensibilities.

Gary Horton lives in Valencia. His column reflects his own views, not necessarily those of The Signal.


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