A Different Kind of War
May is officially ALS Month. Most organizations merely proclaim a single day to recognize their cause. It’s nice we supporters to end this disease get extra time. And though I can’t do anything significant to advance efforts, I want to at least bow and acknowledge the coalition of researchers and organizations who are committed to the work. Equally worthy of applause are the caregivers and professionals devoted to those with ALS. When my sister Nina was suffering, especially in the beginning stages, it was a great comfort for her to feel she was part of this supportive community. Strangely, there is a utopian quality to this caring culture. Illness crosses the party lines. Hope and caring bring people together. But not for long.
Under optimal conditions, the average life expectancy for an ALS patient is from two to five years from diagnosis. Having that short span of time left to live these individuals certainly deserve all the positive vibrations and high tech tools to make those years productive. See, the disease only ravages the body; it doesn’t slow the mind. Had my sister’s ability to speak held out long enough for her to use voice recognition software, she’d have been blogging and online trading till her last day on Earth. Nina was a communicator, a social creature of particular tastes, all in all a perfect type A. I often see these same character traits mirrored in the patients featured on the pages of the ALS Association newsletters. Also notable, according to the association, “For reasons still unknown to the scientific community, veterans are twice as likely to develop ALS, which is 100 percent fatal.” Empirical evidence seems to suggest that indeed only the good die young.
Another alarming fact is that an average of 15 people a day receive this diagnoses. Midway through the drama of life they are, in an instant, changed. So too are their families and friends. Time becomes achingly short and doubly precious. There’s an army of people in this predicament. So on this Memorial Day when we pay homage to the men and women who died in military service, let’s also take a moment to remember those individuals in the midst of fighting a losing battle against an unforgiving enemy.