Article: Those with ALS redefine what it means to be alive

I come across this story on CNN today. And it just reminds me of my dad during his last week.


"-- With the tap of a toe or the blink of an eye, those with ALS are redefining what it means to be alive.
Just a year and a half ago, my mother, Myrna Malveaux, 69, was healthy. Our family's matriarch, she was the one who was the life of the party, the trusted confidante but town crier of all family secrets, the glue that held my father, me, and my three siblings together.

When I was told she had ALS I honestly didn't know what it was. But then my sister described it to me over the phone and I had to pull over the car. It's a fatal, fast-moving neuromuscular disease that would paralyze my mother limb by limb. First robbing her of her ability to swallow, then speak, move and breathe.
When that reality set in, I spent many nights in my home, crying on the floor. What enabled me to get up was that my mother accepted her fate with a strength and grace I'd never seen before. In anyone.
When she began choking on her food, losing her ability to swallow, she got a feeding tube.
When she lost her ability to walk, she got a motorized wheelchair.
When she could no longer speak, she picked up a word board and started spelling out her conversations, still telling my father what to do.
And finally when she lost her ability to breathe, she got a tracheotomy and ventilator to stay alive.
...
My mother smiles when she sees her grandchildren, her eyes light up when you walk in the door, she relaxes when the sun shines on her face. These days our family is just about hanging out."

Source: CNN