No one is talking. Or making eye contact. We’re a group of strangers seated around a table in a conference room eating sandwiches and brownies from Costco and waiting for the clinic to begin. Mary, a volunteer with the ALS Association, who’s been doing this for 30 years, smiles and says, “Wow, this is a really quiet group.”
Mary introduces herself, saying she started volunteering after her mother died of ALS. Then we go around the table. First up a family from a little town in southeast Texas. It’s their second time to attend the clinic. Mom has ALS. She’s a sweetie with a beautiful smile. Dad looks shell shocked and doesn’t say much. They’ll be moving in with their daughter, who has come armed with a notebook and a determined smile.
Next up a couple who has been married 47 years. He’s still able to walk and talk. He says he’s doing okay. They brought along their granddaughter.
Then we get to the gentleman next to me. He’s a hoot. He’s losing his voice because his is the bulbar-onset (the part of the brain that controls swallowing, chewing and talking) form of ALS. He says his wife takes care of him. She laughs. He says she’s glad he doesn’t talk so much. “Stop it,” she says, playfully smacking his arm.
Her laugh turns to sobs she endeavors to swallow.
“Next,” he says in that hoarse, breathless voice.
Next is an older man in a wheelchair. He dressed in neatly pressed blue jeans and a western shirt. His son says they’ve been coming to clinic for years because his grandfather had ALS. They cared for him until he died and now he’s caring for his dad on the same journey. About 10 percent of ALS cases are familial. He doesn’t say it, but I can only imagine that sees himself in that wheelchair somewhere down the road.
Our final couple are snowbirds visiting our great state of Texas. She has just learned of her diagnosis that morning. She doesn’t make it through the introduction. Her voice breaks and she wails, a heart-wrenching cry that brings immediate tears to my eyes.
“It’s okay to cry,” says the daughter whose taking her parents into her home, as she wipes at her eyes. It’s a good thing, because I can’t seem to stop.
The woman’s husband steps in and makes the introductions. Like the earlier couple, they’ve been married for 47 years. The doctors up north told them this certified ALS clinic in South Texas was the perfect place for them.
Thirty minutes earlier we were strangers. In less than an hour, we bonded in a way that rarely happens any more. I’ve said it before and I’ll say it again, I only have to look left or right to see people who are fighting bigger battles than my own. Battles, in this case, that ultimately can’t be won. That doesn’t stop them from valiantly trying.
I saw so much love and devotion and loyalty in that conference room. Husbands and wives who take their “in sickness and health” vows very seriously. Children who will become like parents to their mothers or fathers as their disease progresses and they’re no longer able to dress or bath or feed themselves.
In a place where there is so much heartbreak, I saw so much hope for the human race. Innately good people striving to hold themselves together for their loved ones. As patients and as caregivers.
The social worker who provides her services to the clinic told me the patients are always nice. “It seems like ALS only affects nice people.”
Or battling a terminal disease makes people realize they don’t want to waste a single, precious minute on being petty or negative or causing hurt to others. Life is too short. Literally.
For me, the clinic is always a reminder that I am blessed, in a perverse sort of way, to have a diagnosis of Primary Lateral Sclerosis (PLS). A slow-moving cousin to ALS that won’t kill me. Not any time soon, anyway.
The day after the clinic I pick up a loaner walker from the Texas ALS Association office. After two years, I’m graduating from cane to walker. I’ll start wearing my AFOs (braces) again. The doctor says this will help stave off more falls like the two I took during the holidays. I struggle to overcome my vanity. I hated walking around with the cane and imagining people seeing me as an old lady who might have had a stroke. Now, a walker. I turned 59 on Friday. I’m not old. I press my lips together to keep from saying it aloud.
Getting old is not a gift everyone receives. All across the country, doctors and researchers are battling to find treatments and a cure for ALS. They can’t come soon enough. I have a group of new friends who need that cure now.
I thank God for Mary and Becky, the volunteers, and for Steve Morris, the Texas ALS Association’s director in San Antonio, and Dr. Carlayne Jackson, the ALS Clinic Director at the UT School of Medicine, and the cadre of specialists who see us each time we come to the clinic. They have a hard job and they do it with kindness and grace.
Pray for them. And thank God that you can still put your arms around your loved ones, hug them, and kiss them. Thank God you can still say the words, “I love you” aloud. Forgive small slights. Give them the gift of your time.
For more information about Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s Disease, visit the ALS Association’s website at http://www.als.org.
As always, please feel free to share your experiences with me below in the comments.