Browsing Tag

ALS

death, Family, Guest Posts

Frosty Mauve

August 14, 2016
mother

By Kim Derby

The silence hits me in the face when I walk in. Free of beeping and flashing bright lights, her hospital room is nothing like what you see on TV, the monotonous drone of machines sprouting tubes, blaring alarms. Instead it’s stillness, and the creak of the door as it closes behind me. Daylight streams through a window across the room, lights up her face. I move toward the bed, cautious as if she had a virus I might catch.    

Hi Mom. It’s your daughter. I’m here.”

Her mouth is open, slightly ajar. A lip-gloss sits on the table next to her. Someone must have applied it recently because her lips glisten. I touch her cheek with the back of my hand. Ice. And I pull the blanket up around her neck. Hold her hand, I tell myself, but she’s tucked tight under the bedding. Swaddled. I hate myself for being too freaked out to reach under and take her hand. I reach for her cheek again, rub it softly with the back of my hand. Her 76-year-old face is bare, free of mascara or makeup. It glows, smooth like un-worry, free of wrinkles, contempt or scorn.

“Mom, your skin looks really good.” I think she’d like to know.

Saliva collects under my tongue and I’m glad I haven’t eaten in three hours. I step back from the bed, swallow. I think I’m going to be sick.  Continue Reading…

Grief, Guest Posts

Johnny Cash, Eve, Me, That One Guy, and Maybe You

August 5, 2015

By Nick Belperio

The statue was naked, and I was nine, and the first thing I thought was, Her privates are out in public.   In the hush of the art museum, I snickered like someone much younger, like a seven-year old.   Mom squeezed my hand, nodding at a small plaque on the pedestal.

“Can you read that, honey?”   The first word was easy.

“Eve,” I said and sounded out the rest.  “Dis…con…SOLE…eight?”

“Disconsolate,” she corrected, emphasis on the second syllable.

“What’s that mean?”

Mom regarded the statue for a long moment:  Eve towered over us, her smooth face pitched heavenward, a serpent twining her ankle.   “More than sad,” she said.

“Why’s she so sad?” I wanted to know.

“She was thrown out of paradise.  Cast out forever, along with her husband.  That’s why.”

I looked it up when we got home:  Adj., without solace or consolation; hopelessly unhappy.  Mom was right:  more than sad.   Nine year-old me shrugged, filing it away with the other big words I knew that no one ever used.

It came back to me thirty-some years later, during a typically sclerotic Los Angeles rush hour.  As I inched homeward on Pico Boulevard, I glanced in my rearview mirror:  the driver of the SUV behind me was crying.  Really crying.  White man in a suit, early fifties I guessed, and in the grip of a strenuous bout of weeping.  A woman in the passenger seat offered him tissues and awkward half-hugs, but he looked beyond comfort.  This guy was distraught.  Keeping my eyes on traffic was nearly impossible.

He bawled openly, his face red and contorted, the mouth gaping; every once in a while, you’ll see an infant wail with such abandon, but a stranger?  An adult?   Never:  It seemed extravagant, to give yourself up to sorrow so fully, a luxury somehow, and also unseemly:  this level of sadness usually insists on strict privacy.  He’s losing it, I thought.  Why doesn’t he pull over?  Doesn’t he know people can see him?

And that’s when the word first returned to me.  Presented itself, fully-formed:

Disconsolate, in my mother’s soothing voice.   Ah, yes.  Disconsolate, adj.:  illustrated—dramatized, in fact—right here in my rearview.  I watched greedily, until I turned my corner and left them.  I don’t remember the make of his SUV, or its color, or the color of his hair; but the anguish on that guy’s face, how pure and unmitigated it was, has never left me.   That I remember.  I recognize it, now that I’m in my fifties.

Aging, it seems, is an accumulation:  of years and then decades, of course; of knowledge and experience, sure; of grudges and injustices and mysterious bruises, certainly.   Sometimes aging brings wonder—Can you believe we’re in our fifties? my friends and I whisper incredulously.  We’re officially middle-aged!—and sometimes a kernel or two of wisdom.  Always, though—always—it brings loss of some sort; we know this.  Losses come, and sometimes they multiply; adulthood stacks sadnesses and disappointments like firewood out back.   Look at your friends.  Look at mine. Continue Reading…

Guest Posts, Relationships, Truth

We Can Pretend

April 14, 2015

beauty-hunting-jen-logo-black1-300x88By Kylie Foy

The doctor said if they couldn’t find a solution, Andrew would die within the year. That’s what Andrew said, and so that’s what I believed.

We were 17 when this started. The blackouts. The first time it happened we were in his bedroom – a little boy’s bedroom with panda wallpaper. He started whining and thrashing around. He clawed at his ribcage like he had some kind of animal in him trying to escape. It went on for a few minutes until he was limp.

I pulled his face up from the side of the bed and put it on my lap. He wouldn’t wake up. My knees started shaking. My tears mixed with my makeup, my face streaked in black.

Then nothing was wrong. He moved. He woke up.

***

 We grew up together in our quiet town. He was the skinny boy in middle school who took pictures and wrote poems. He was the one with the mom in the wheelchair. We saw her at the chorus concert.

He was twelve when she started to die from ALS. He was thirteen when he had to help feed her. He was fourteen when he was too weak to help carry her. He was fifteen when he gave up. He was sixteen when she died. That’s the story he didn’t tell.

***

A few weeks into our relationship, we were sitting in the auditorium waiting for play practice to start. Andrew was suddenly running out the door, head in his hands. I followed him and found him curled up outside the doors.

“What’s wrong?” I asked. “You can tell me. Trust me.”

He wept as he told me his little cousin Cooper had died from leukemia: “He wanted to be a barber. He was supposed to be a barber, and now he’s dead.” Continue Reading…

Guest Posts, Inspiration

Hello, My Name is Rebecca & I Lost My Mom to ALS.

August 27, 2012

The following guest post is by the incredibly gifted Rebecca Butler. I met Rebecca because I posted something on my Facebook saying “What Are You Afraid Of? What Fear Do You Want to Tell To Eff Off?” Now we have never met, and I didn’t know who she was when her message came in my inbox, but suffice to say that since that message, we have become friends and I am now going to teach workshops at Karmany Yoga where she is manager and lead studio teacher teaches in Dallas/Ft. Worth, Texas. Again, I marvel at connection. How powerful it. How powerful social media and vulnerability can be. Here is what her message about fear said:

Hello there. I am a fan. You inspire me. So thanks for that. And I am responding to your request for a couple of paragraphs on fear – what you are afraid of…

I am afraid of being too fat and being too thin. I am afraid of being too kind and being too mean. I am afraid of staying married and being single again. I am afraid of being incredible and falling flat on my face. I am afraid of becoming my father and never living up to the memory of my mom.

Not so long ago, a dear friend of mine took me through an incredible energetic soul retrieval. In this experience, I shed layers of sorrow and disappointment and I felt a strong, overwhelming beam of pure energy into my solar plexus – so much that I was pinned to the floor while my entire being became tingly. And what did I feel during this rush? Joy over this connection with the infinite divine? Eh, a smidge. Elation at the imminent newborn potential clearly being established within me? Sure, kinda. But mostly, I felt fear. Fear that this amazing feeling would leave me soon and I’d be back to plain old me. And to this, I say: FUCK IT. Fuck fear.

Below is the guest post I asked her to write, because, well, how could i not after reading her email? She is a tremendous writer and a beautiful mind. Looking forward to my workshops in Dallas!

Hello, My Name is Rebecca & I Lost My Mom to ALS.

Hi. I probably don’t know you. And I’ve been asked to write a guest blog post for this site, which I consider a huge honor. At the same time, it’s intimidating. I want to make sure I tell you something poignant. I want to offer you something humbly from my own experience walking this Earth. And I intend to do so with love.

By far, the most intense thing I’ve weathered in my 38 trips around the sun was losing my mom to ALS.

It was slow.

It was brutal.

It was harsh.

There were moments of love so pure, so strong, so rich; words will never do them justice.

There were moments of pain so deep, so great, so overpowering; words will never do them justice.

There were moments of beauty so radiant, so wild, so raw; words will never do them justice.

Suffice it to say that even though I loathed my helplessness during this process, I will never regret the lengths to which I went to be by her side. And I will always cherish the learning’s she gave me – sometimes via words, mostly via actions.

She was courageous.

She was brave.

She was honorable.

She was angry.

She was terrified.

She was ready.

She taught me…

…that there is nothing in life so important as the love and laughter of your family and friends.

…to cherish your partner and stand by them through thick and thin.

…that being judgmental towards yourself and/or anyone else is a fucking waste of time and energy and it should not be borne. Ever. Period.

…that staring death right in the face with openness and acceptance is true strength.

…that life is a gift to be lived with gusto and without apology.

From her bedside, I learned…

…breathing is special. Succulent. Delicious and not nearly as easy as healthy people think of it as being.

…swallowing is sophisticated work and is as delightful as any handstand will ever be.

…love is meant to be given away freely. To any and everyone you can possibly ladle it upon. Without question. Without fear. Without expectation.

…fear is a nasty mother fucker trying to steal your light at any given point and it is incumbent upon you to never relent!

…nurturing energy is perhaps our greatest gift. And it can be wielded without words, without even moving anything more than your left arm. From your bedside.

And in her memory, I will continue to walk this Earth cherishing the beauty and power of each moment. Even if it comes with pain. Even if it comes with sorrow. Because in the end, I have the power to Choose Joy. And that is what I choose.

Joy.

Joy over having ever known a creature so amazing.

Joy over having the chance to create change and encourage others to love their lives exactly the way they are! Right now!

Joy. Just because. Just because I can. Joy.

Connect with Rebecca by clicking here or on the above photo.

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