Can you show just a little more love?
by Debra DeAngelo
Yes, I realize it’s been only two weeks since I appealed to all the lovely people who visit me here to please, please, please match my $20 donation to help support Cathy Speck, in the Walk to Defeat ALS. Many responded, and thank you for reaffirming that humanity is not as suckful as I suspected. (If you haven’t yet donated, it’s not too late. Just go to the Walk to Defeat ALS website and search the teams for “The Specktaculars.” Donating is simple.)
Cathy tells me that there was a bounce in donations following my column, which appeared elsewhere and was distributed by the local ALS Association. Someone even mailed a $20 bill to me anonymously. There’s something so mysteriously noble about those who give, and expect nothing in return but the warmth in their own heart. Thank you, mystery donor, and everyone who opened their hearts and wallets to help fight this cruel disease. Every dollar is one more step along the Walk toward a cure.
While we’re walking with Cathy, I’m hoping we can also share a little love on Saturday, Sept. 22, 4-6 p.m. at Sudwerk in Davis, where a fundraiser is planned to help support Ben Davis. Ben is the second eldest of Drs. Bill and Wendy Davis’ four sons. Although currently Winters residents, both Bill and Wendy are Davis natives. Ben himself is a celebrity of sorts — the Associated Press snapped a photo of him as an infant, nestled in Wendy’s backpack as she got her bachelor’s degree at UC Davis in May of 1977. The photo ran nationwide, and even in Star magazine.
Well, little Ben is all grown up now, and, at 35, is afflicted with a rare neuromuscular degenerative disease — so rare that there isn’t even a name for it. It’s similar to ALS, but not ALS. It’s similar to the disease afflicting Stephen Hawking, but not exactly that either. While no one knows what to call it, the effects are devastating, beginning so innocuously several years ago — one day while shooting hoops, Ben didn’t feel as sharp as he used to be. And so it began. And progressed. Now, he sits in a wheelchair, unable to speak or walk or care for himself without constant assistance.
And yet — he still shows up at work every day. With his PhD in clinical studies from UC Davis, Ben does research at the Center for Health and the Environment at UC Davis on how medications called “statins” affect emphysema Chronic Obstructive Pulmonary Disease (COPD). His research is being exchanged internationally, and could potentially help save thousands of lives each year. Besides his research, he and his wife, Madoka, are busy raising their two children, ages 6 and 3.
I sat down to chat with Ben the other day. He communicates with a specialized computer and mouse that seem to lasso letters so he can form sentences, which you read on the monitor as you sit next to him, and can carry on a conversation. As with ALS patients I’ve known, it seems like Ben’s body is melting all around him. But Ben is clearly still there, inside, sharp as ever. I don’t know what they’ll eventually call Ben’s disease, but it’s just as cruel as ALS, snatching a young person without warning and whittling her or his life away, limb by limb, organ by organ, until there’s nothing left but breathing tubes and wheelchairs and crushing dependency.
Sadly, dependency means hiring full-time help (which is expensive), or languishing in a hospital bed, wasting away, waiting to die. And all the while, your mind is sharp and clear, and aware of everything. It’s like Alzheimer’s Disease in reverse. And it’s brutal. And unfair.
Ben and Cathy are bright, energetic, talented people with so much left to give us. Cathy is a gifted musician and singer, and now a writer as well. She has things left to sing and say. Ben’s research may prevent others from essentially suffocating to death from lung disease. Both are literally devoting every last ounce of energy, every last moment of their lives, to helping others. Our piddly little $20 bills are meager by comparison.
Maybe you’ve already donated to the Walk to Defeat ALS. Could you scrape up $20 more for Ben’s fundraiser? Please don’t take too long to think about it. These diseases aren’t patient. Cathy and Ben may not be with us a whole lot longer. Cathy, with her wacky gallows humor, keeps gently but firmly forcing me to face that. Ben predicts that he has about four more years. That doesn’t seem too long to you and me, but Ben says he can do a lot more research in four years. And, he adds, “Four years is a pretty long time to a 3-year-old.”
Try reading that on a computer monitor and not feeling a punch right to the heart.
So, let’s help make those four years count. If you can’t attend the fundraiser, you can go to www.youcaring.com and search for “Ben Davis.” You can also find “Ben Davis Fundraiser” on Facebook, which lists the Sudwerk fundraiser. And then you can “like” them and share these pages on your own wall.
Cathy and Ben. I want to keep both of them around for as long as possible. I want a cure to come, and for them to regain their strength, and walk and sing and play basketball. In the meantime, I want them to know that whatever time they have left is being exceedingly well-spent; that they’re loved, and valued, and valuable. And that we care. I want them to know that we will twist their suffering into something that benefits the greater good of all.
I hope you want the same.