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.
Wow Kelly! I had no idea! I was looking for a way to contact you and wish you Happy Birthday!, and I found this blog. Also, after reading your Christmas letter, I wanted to get a hold of you and find out what it is that your going through. Battling cancer on top of PLS?! What kind of cancer? I love that you are still full of life, faith, and greatfulness. You are an amazing woman! How awesome you have two grandchildren! Are Erin and the kids still with you? Has Shawn found a job yet? Congratulations on all of the awards for your books. I will be praying for you Kelly. – Margie
Thanks, Margie. It’s so good to hear from you. I’ll send you an email so we can catch up!
Raquel M Martinez
Wow. I cannot make words to say what I need or want to say. Just wow.
It is a mind-blogging disease, no doubt about it, Raquel. I follow the ALS Association on Facebook and today they have a blog from a man who has been battling ALS for 16 years (very unusual to survive that long). He wrote the blog with his big toe.
Friend, I love you. Lunch soon!
Love you too, Eileen. Talk to you soon about lunch!
So glad you shared this, ALS is a terrible disease that effects millions of people each year and if you helped one person with your story than you did good, prayers for you and the whole group and all the ALS groups will be on there way. It’s a beautiful thing when you touch someone’s life with your story.
Your prayers are greatly appreciated, Cherese. And thanks for your kind words!
Oh, Kelly, how I admire you. My father battled an undiagnosable muscular atrophy for ten years. (Undiagnosable in the 1960s. Mayo Clinic was his final stop in his quest to find a diagnosis.) We as a family battled the monster alongside him. You’re in rarified company–living testimonies to God’s presence in the struggles of His people.
There is much to be thankful in terms of how far we’ve come in understanding and diagnosing ALS. More can be done to make patients comfortable. Technology allows them to continue to communicate. Better wheelchairs, lifts, vans, and other medical equipment to address all the ways they are affected as their bodies shut down. Still, ultimately, we don’t have the key to it, the thing that will help us stop the dreadful decline of their bodies. That’s what I pray for, Linda. I don’t know how people get through this without God’s love and companionship. God bless your family for your battle.
As always I’m praying for you and now for the members of your group and their families.
Was first drawn to your books after learning you were originally from Kansas. I am from Kansas City, Kansas and really enjoy reading works from somewhat local writers. So I read The Beekeeper’s Son and found it so powerful. Then started reading your other works! Love your writing.
So sorry to hear of all that you are battling. I will keep you and your family in my thoughts and prayers. May God be with you.
Thank you, Linda. I’m so glad you enjoyed The Beekeeper’s Son and my other books. Your kind words are appreciated and so are your prayers!
Nancy Goldberg Levine
Hi, Kelly–really enjoy your books. Sorry to hear about all of your health problems. I am close to your age (61) and these make my problems seem very small (arthritis, high blood pressure, esophogitis).
My mom’s good friend’s husband had ALS and passed away. He was a very nice person–he played in the symphony orchestra. She’s lovely, too. Good thoughts and prayers to you!
ALS is such an indiscriminate disease. It makes me so sad. Beautiful music that is missed, I’m sure. Thanks for your prayers and I’m so glad you enjoy my books!