I don't have a funny video to post of anyone dumping water on my head to show support for amyotrophic lateral sclerosis or ALS. Though many find the videos tiresome at this point, I have no issue with the idea but instead choose to tell a story about a story I once told.
Girls basketball fans in Hampton Roads likely have vivid memories of a high school team that included T.J. Jordan, whose three-point shooting lit up Old Dominion for four years, and her Wilson High School teammate Khadijah "KD" Whittington, who moved to the area for her senior year of high school. Whittington and Jordan only played together for one season, 2003, a memorable one in Portsmouth, Va, when the Presidents got all the way to the state final before a crushing loss.
Whittington would go on to star at NC State under Coach Kay Yow, and a WNBA career followed.
Her father, Mansoor Mohammed, suffered from ALS.
Instead of following his daughter's basketball career, instead of sharing in her adult life, he was confined to a bed in a Hampton nursing home. Father and daughter had always been close. As much as she was the emotional heartbeat of her high school team, he was her emotional heartbeat. He never missed a game until he wasn't able to go anymore.
He laid in that bed for six years.
One Sunday, I accompanied her to visit her dad. She was visiting from Raleigh during her senior year at NC State.
For two hours, I said almost nothing. I watched KD and her dad. She kissed his forehead. She braided his hair. She read him cards that were sitting on a nearby table. She opened a present -- a dream catcher. She cleaned his ears and washed his face. She read from his Koran. She talked and talked and talked, sharing stories about her progress as a college player and her WNBA dreams. She talked about the Wolfpack's trip to the Bahamas, and then she began to weave his puffy black and gray hair into dreadlocks, joking that he looked too much like Don King with all that hair.
She dabbed away occasional tears and told him over and over how much she loved him.
Mohammed never spoke. Beyond occasional blinks from his eyes, nothing else about his body moved. I have never seen anyone so rigid, teeth entirely clenched. He stared intently at his daughter. She swore he smiled a few times, and I'd like to think he did.
But here's what I know. The ALS robbed him of movement and communication in a cruel way. Imagine if your mind worked, but you couldn't make any part of you work or speak or respond to those around you. During early visits, KD used an alphabet chart to try to communicate with her dad, but that became too laborious for both as the disease progressed. All life as most of us know it was impossible for this man in this bed who had tubes sticking out of every part of him with machines beeping that occasionally prompted nurses to check. His life was closer to death than life.
For me, ALS is Mansoor Mohammed. It was January 2008. That September he died at the age of 57.
I remember leaving that nursing home that afternoon, feeling a sense of relief when I walked out the door, more focused on my own movement than ever before. Walking and speaking -- two things I admittedly take for granted -- never felt so good. I hopped in my car and got back on the interstate, but the image of Mohammed couldn't escape me. Sometimes I would think of all the things I had done in an hour or in a day or in a week and I would think of him, still lying motionless, no chance of recovery.
Because here are the facts. ALS attacks nerve cells and leads to total paralysis. The mind, however, remains sharp. Life expectancy is two to five years after diagnosis. The cause isn't known. There is no cure.
I don't tire of the Ice Bucket Challenge for that reason. The added awareness has brought in $41 million and counting -- donations that can perhaps bring us closer to a cure so no one has to suffer the way Mansoor Mohammed did for more than half a decade.
I donate to the ALS Association today in memory of Mohammed and in honor of KD. No one should have to suffer as the two of them did.