Posted in Living

This Walk of Pain and Faith: Our Journey So Far With ALS


I dream in colors, swatches of Kodachrome disguising the reality in black and white. In my dreams, she speaks and walks, even as I know these are impossible things. I wake to a heavy feeling in my chest, am weighted down by the acrobatics my mind undertakes to transition from this dreaminess to the hard, cold truth.

I have, thankfully, come late in life to this quasi-existence, this place where only when I dream can things approach anything like sameness, and yet the reality flitters in and out of my dream-state like the lightening bugs that drew me into the dark as a child, even when that darkness cloaked everything in a nebulous, nameless shroud.

This shift has come gradually, not like the nightmares when all this first began, standing in a hospital room filled with a world-renowned expert and his entourage of students and administrative assistants and sour-faced nurses desperate to provide a tissue this band of sickroom veterans reject like one more sign of weakness our bodies were not designed for. We have sat in such sterile rooms before, though this news is the most fatal we have ever heard. The words tumble out of the doctor’s mouth in a staccato of long syllables as if talking over our heads will somehow take the sting out.

My mother has no idea what amyotrophic lateral sclerosis even stands for, so she is spared the dread of realizing how much more of the little control of muscle she has left she will also lose. It’s almost six months before a physician’s assistant lets slip the inevitability of a feeding tube, but by then so much is lost, she takes the news like just another gut punch, absorbed until it settles in her mind as just one more thing somebody else will have to do for her.

This woman lying in the easy chair she will never rise from again under her own power is not the mother who sponsored home rooms, created treasure hunts around the house at Easter, lived by the motto that it was better to try something like a scary roller coaster ride than to miss out.

But she is also exactly the mother I have known for more than four decades. When her speech becomes guttural syllables only my father can decipher, I still can complete any sentence she begins. Her needs and her pleasures have funneled to a pinpoint. Robbed of the ability to provide her with anything except what might increase her comfort, I become an expert navigator in the world of online medical supply sales, flower delivery and complete DVD series.

On any given Monday, families like mine snake their way through the busy medical district in downtown Houston for their first day of several at this specialized clinic, one of only five in the country, where the handful of specialists required to successfully treat this degenerative disease gather to make at least one thing in the difficult life of an ALS patient that much simpler. Families come with a hard knot in their stomachs, hoping against hope that what they have long suspected as their loved one disintegrates in front of them will not be what the guy in the white coat and bow tie confirms in his matter-of-fact, clipped doctor’s voice.

I am numb the first few hours, taking in the barrage of instructions and specialists that become a sudden, permanent part of our family. Too quickly, the numbness gives way to fear. Not fear. Horror. I google the abominable three letters that would make even a hard-core Christian question God and feel the vomit rise in my throat. I dope myself at night to attempt sleep that is sporadic and filled with dark, amorphic images, waking to a pounding heart and pajamas drenched in sweat. In the course of three days, I lose more than ten pounds.

This reaction must be nothing compared to what my parents are feeling, except nobody gives voice to the emotion. My mother tells me she thinks she probably doesn’t want to know exactly what is wrong with her. My father takes the diagnosis onto shoulders hardened by a lifetime of blows such as this, with the optimistic resignation that we deal with what is and strive for ways to triumph.

Our triumphs have come in small victories that shine rays of hope upon us like the West Texas sun pushing violet and umber rays through mustard-green thunder clouds. A cat toy taped to reading glasses allows Mom to shine a laser light on the poster board across the room to spell out what she cannot communicate with the gestures of her eyes and head. Dad fashions a lever for the breathing machine so my mother’s otherwise useless hands can still ramp it down at night.

Their life has become a regimented routine, narrowed to the effort it takes to exist in an adult-sized body that must be cossetted as if she were a new born child. To eat, to evacuate, to wipe an eyelash from her cheek, all require somebody else’s hands and muscles. Besides control of her elimination organs, the only mercy left her with this illness is the ability to still chew and swallow many, but not all, of the foods she finds delicious. At some point, even that luxury will vanish.

I doubt the medical staff and doctors know what to make of us. My father moves her legs and arms, her hands and feet on a regular basis each day, as well as any physical therapist might do it. When Mom received her feeding tube this summer, it was my father showing the nursing staff how to operate the new-style Mic-key tube the doctor had implanted. I’m thankful the world-renowned neurologist is tolerant of my habit of disagreeing with him, despite the room full of white coats in audience to my stubborn rebellion. After a lifetime of dealing with people in situations like ours, he understands the woman lying in the bed is not his mother.

We have reached a point where the sameness of our days allows us to grasp at the special moments like gem-shaped treasures. My mother’s tears, which can come unbidden in an almost constant flow as a result of this disease, have given way to unleashed laughter. Her humor, always present, has bloomed to provide us with the highlights of our days. My description of my cat’s response to his first visit from my sister’s dog results in a bout of contagious laughter. My sister and I plot the conversations we know will make her smile, our daily dialogues with our dad over the speakerphone our only connection to her as we try to juggle our own lives with this need to spend as much time as possible with parents a day’s travel from home.

As tough as the journey has been, we breathe in and out in the knowledge that the worse is yet to come. Those who have taken similar journeys know the cliff that awaits us, the freefall into absence no sojourner survives. We thank God for laughter, for her breathing not deteriorating, for a pulmonary doctor who is the only one to trust our ability to make many of the medical decisions ourselves.

Kindness comes in the prayers of acquaintances who have never met her, in the visits my cousin makes to keep her hair trimmed, in the flowers even relatives who have never called her on the phone have sent for her birthday. We hold these moments close to the hearts we are notorious for shielding, gathering courage for the unknown even as we know courage will fail us.

In the midst of a life where I have dwelled in the unattainable, throwing my energy at questions about my doing, desperately seeking the approval of a God who chooses to speak only through the veil of my own, cluttered thinking, this disease stalemates me. God draws me closer, and the devil pushes me to the cold, outer reaches where God, honoring my stubborn tantrum, vanishes. Yesterday, I wondered suddenly why I was seeking the approval of a God who, like an absent father, refuses to give me a straight answer. What does love look like when all talent, no matter how heavenly, has only that place of decay and dark-before-the-dawn to go?

These are dramatic turnings of a mind that knows better, of a body that was raised to face the hardships of living and smile in the face of adversity. God, who loves me unconditionally, does me the greatest honor by not laughing me off the page of this, my egotistic, narrow-minded existence.

For now, it is enough, this twilight time of routines designed to make my mother as comfortable and happy as a person paralyzed from head to toe but not in mind can be. We move forward knowing that this persevering is honing us for something bigger than ourselves. We settle into the not so comfortable position of listening for those instructions that will further push us outside our comfort zones, knowing all the while that if we manage somehow to accomplish God’s purpose for us here on this fallen planet, we will likely never know we’ve done it.

Our only comfort is the inkling, soft and clingy like a spider’s web, that the part of her that might suffer most from this deterioration of the body is already tucked away somewhere in the corner of her spirit, dormant and waiting for the day when the saints dance around the throne of God.

Mom after one of my cousin's gracious house-call beauty sessions.
Mom after one of my cousin’s gracious house-call beauty sessions.
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Author:

I am a 40-something Texan with a feisty cat and a supportive husband of 20 years. With a Master's degree in English with an emphasis on creative writing, I have taught creative writing at Texas Tech, won awards for my writing and been blessed to be mentored by Horn Professor and poet Dr. Walt McDonald. I earn a living by helping my husband's family run a health food store, but my avocation is writing. I hope you enjoy reading about some of my triumphs and tragedies as I continue to work on figuring out what life is all about and on growing my ability to share my writing. May your own journey be a blessed one.

5 thoughts on “This Walk of Pain and Faith: Our Journey So Far With ALS

  1. Ramona, you touch my heart. This letter of love reaches out to so many. Prayers to your family and precious family.
    PS: TC keep your family together.

  2. A beautiful, heartfelt writing that comes from the heart of a daughter. Love shows so deeply that it touches the hearts of other readers also. Well done, Ramona

  3. Ramona, your words are inspiring and heartbreaking all in one. I can only imagine the pain you face daily and the turmoil you feel by not being able to be at your moms bedside every minute of everyday. I haven’t seen you in years but I did get the chance to see your mom after losing my own mom to Ovarian cancer a little over six years ago. Your mom was so bubbly,happy,and up beat in Vegas where we met up and spent some time together. She spoke so fondly of you kids and I could tell how proud she was of her family. I think of her often and the strength your dad has to take on being her care giver. He is a wonderful husband, dad, and friend. I pray you continue to have those days where you can laugh and share conversations and have your mom be a part of your daily life. My mom told me, she was not afraid to die at all I believe she knew God would take care of her,however, she said she would miss her kids and her family. The day I told her it was ok to let go and that it sucked that I didn’t want to be without her but I didn’t want to see her in pain was the last day she was with me…minutes later after I spoke she took her last breath and I knew she was at peace. Losing my mom was the hardest thing I have ever had to deal with and it made me question a lot of things from faith to what if? I just know when I loss her i loss a piece of me that probably will never return. I pray your days ahead with your mom can be as good as one can have. Remember always, a moms love is a forever love and she expects nothing in return her everything is her children and her family. Sorry, I wrote so much but I feel for you and what your fanpmily is going through. Hugs, Paige ❤️

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