The Two-Headed Frog

Ecological Fallout: ALS Linked to Toxins and PollutantsBy Laurie L. Barclay, MD

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My reaction:

I knew it. Instinct (and the insanely long survey I had to take about toxin exposure) hinted to me that ALS may be triggered by environmental contamination.

I may not be a scientist, but I am a tree-hugger, and we all know that is basically the same thing. Going all the way back to 7th grade, every time I saw pictures of mutated animals in science books, I hypothesized, “This is going to catch up with us one day.”

Lo and behold… I am the two-headed frog.

 

Other Lives

Once upon a time, this was me.

Rachel does a Sparkler Dance

She still lives, but hers is a suffocating, frightened existence inside the shell ALS built around her.

Sitting in my wheelchair, too weak to lift a teacup, I make a resolution: to do anything and everything to be the girl who dances with fire once again. Now, I am on a rescue mission to get her back. I don’t have much time. However, I have hope because I am my own knight. I will keep testing and funding new research until one day…

I am sitting with a new friend from yoga class at a sidewalk cafe. This place is humming with voices, one of them mine. I meant to keep the conversation light, but I can’t resist. After all, it’s my anniversary.

I say, “Would you believe I used to have ALS?”

She’ll gasp, thinking how she never would have known, remembering my perfect sun salutation in yoga class; my recovery was so remarkably complete. I smile. It’s been ten years, and I still feel a thrill in my chest whenever I even think, “I had ALS.” It’s my very own happy ending.

“The Ice Bucket disease?” she asks, then flaps her hands as she reins in her shock, continuing, “I mean, the awful one they cured with the ice buckets? Oh my God! How long did you have it? You must have been so scared!”

I don’t answer fully. The truth is too overwhelming for most people. They are uneasy hearing that for those eight years, I felt like I was aging at cyber speed while watching the end rushing toward me. Then, there was the cure, I’d go on to explain; that was like being snagged at the ankle and dragged back through a tunnel of time. The universe flipped, I’d tell them, demonstrating with excited hands, and I was born back into the world, hardly worse for the wear, learning to exist in a healthy human body again.

After I share all this, people are left speechless (like I was for six years), and the conversation never quite recovers, so I keep my reply short and easy: “Eight years of Hell.”

She shudders at the horror, quickly shrugging off thoughts of suffering in a way I envy. In mere seconds, she shuts it out and steer us back to clearer waters. I don’t mind. I’ve said my piece.

It’s time to move on.

 

“There will be other lives.
There will be other lives for brand-new suitcases transporting you to strange new people in strange new lands.
And there will be other lives for unpaid debts, for one-night stands, for Prague and Paris, for painful shoes with pointy toes, for indecision and revisions.
And there will be other lives for fathers walking daughters down aisles.
And there will be other lives for sweet babies with skin like milk.
And there will be other lives for a man you don’t recognize, for a face in a mirror that is no longer yours, for the funerals of intimates, for shrinking, for teeth that fall out, for hair on your chin, for forgetting everything. Everything.
Oh, there are so many lives. How we wish we could live them concurrently instead of one by one by one. We could select the best pieces of each, stringing them together like a strand of pearls. But that’s not how it works. A human’s life is a beautiful mess.”

Gabrielle Zevin, Elsewhere

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Donate here

 

Demon in My View

Photo by Bob Clark on Pexels.com

“I have not been

as others were –

I have not seen

as others saw…

When the rest of Heaven was blue

of a demon in my view.”

Edgar Allan Poe, “Alone”

I’m so sick of ALS. It is hitting me once again that this is my life, and even when I’m tired or sad, I won’t get a break. ALS will not stop until it kills me or a cure is found. The clock is ticking, and my murderer is stepping on my shadow.

Let’s give them something to talk about

Yet again, ALS is bent on attacking my sense of self. Because of my disabilities, I am stared at, belittled, and even infantilized almost everywhere I go. I’ve always had a thin skin, and this treatment feels like hundreds of papercuts. Stares make my face hot with embarrassment, and I am overcome with the need to hide from strangers’ gazes. It’s hard to believe I used to be an extrovert. The worst part of being in public or around strangers is the ignorant whispering that is just loud enough to hear…

“What’s wrong with her?”

“Can she even hear me?”

“What’s going on with her face? Is she even awake?”

Too often, pALS are treated as though we lack intellect. We are overlooked and misunderstood, causing our social lives to whither. But I have warmth, laughter, stories and advice to share, and in turn, receive. I refuse to live cut off from all of that. I deserve better. We all do, so let’s share the truth about who we are.

Members of the ALS community, I ask you to share your story with everyone who stares with this t-shirt I designed. Purchase Here for $25

Buy a shirt to give people in the ALS community a voice and fund a desperately needed cure. All proceeds go to The ALS Association

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How to Use the Shirt:

  1. On the first (shortest) blank line, use a fabric pen to write in who in your life you are advocating for (even if it’s yourself).
  2. For example, my husband will write “my wife”
  3. Use a fabric pen to fill in the rest of the lines with abilities ALS has stolen. My husband will write “danced ballet, spoke three languages, taught 5th grade.”

His shirt will read: “Before ALS, my wife danced ballet, spoke three languages, taught 5th grade. ‪#‎DefeatALS‬/www.alsa.org”

I hope to see masses of us wear this shirt with pride. We can even slide it over the backs of our wheelchairs. Either way, spread the truth and give them something real to talk about!

The National Park Ice Bucket Challenge Twist!

GlynisDew's avatarLife After ALS: A Caregiver's Journey

So the new website is up and running!!  Now you can take part in the ALS Ice Bucket Challenge this month, BUT you stay DRY!!!  It’s very simple!  I leave for my road trip next week.  And not only is this trip to help me find some beauty, but it’s to raise money and awareness for ALS.  So here’s what you do!!

  1. Go to my website:  www.ALS-NationalParksTour.org
  2. Check out my basic route and parks I will visit
  3. Make your donation: NationaParksTour Donation Page
  4. Fill out the Pick Your Park form and nominate 3 people or businesses to take on the Challenge.
  5. You stay dry!  I get wet! ALS research gets funded!!  WE ALL WIN!!

GlacierGlacier National Park

NGS Picture Id:1744279 Turret Arch seen through North Window at sunrise.

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Beloved on the Earth

“And did you get what
you wanted from this life, even so?

 
I did.

 
And what did you want?

 

To call myself beloved, to feel myself
beloved on the earth.”

 
Raymond Carver, A New Path to the Waterfall

Dirty Floorboards

“I’ve always envied people who sleep easily. Their brains must be cleaner, the floorboards of the skull well swept, all the little monsters closed up in a steamer trunk at the foot of the bed.”― David Benioff, City of Thieves

Some days I sleep 18 hours. Other days I can’t sleep at all, or at least not until the sun comes up. I don’t write because, even though my head is full, my body is at war with my medicine and my disease. This mad cycle has been going on for weeks, and my mental health is fracturing. I try not to remember that this is only one of many battles in my war – that train of thought tends to hurt morale.

Still, though, the floorboards of my skull are littered with rusted screws and dust bunnies. My monsters are much too large for a steamer trunk. They devour their failed prison in chunks, leaving pools of saliva around my bed before skulking back to the shadows of my room. So I look up – it’s where I was trained to believe God lives – and join a primal religion…“Sleep is God. Go worship.” ― Jim Butcher, Death Masks

Leaves in My River, Stars in My Sky

I hate crying – it’s an uncontrollable language of pain, and I lack enough control as it is – but I was crying tonight. I’ve heard that no single emotion is inherently good or bad. We should acknowledge them all, pick each up like a leaf from a stream, think, “It’s just sadness,” then put it back down and let the water take it away. However, I like to pick up the Sadness Leaf, crush it, and bury it in the dirt. Out of sight, out of mind.

Scrolling through my Facebook feed after dinner, I found myself thinking about all the people who stopped speaking to me after my diagnosis, and tears, undeniable evidence of sadness, came. Mostly I stay positive. My doctor and I believe I will survive long enough for a treatment or cure to be developed. That possibility and the love of my friends and family keep me fighting. Still, the deafening silence from people I grew up with, celebrated holidays and birthdays with, listened to when they were troubled… it hurts enough to make my throat clench and my eyes sting. It starts a rush of unwelcome memories of staying up late on the phone, talking a friend through a divorce. Then I recall walking down the aisle preceded by bridesmaids who have faded like ghosts from my life, existing for me now only in photographs. Friends I traveled the world with might as well have stayed on the other side of the ocean; they are that distant from me. These people I loved drifted away like debris on a beach in the first high tide after a tempest.

In the quiet after the storm of my diagnosis, my old life washed away, and I learned the truth about those I love. People who are far away or have been out of touch resurface, and I realized that for all the people nearby who are too weak to support me, there are others, scattered like stars on a winter night, who have been glowing for me this whole time.

There is the college friend I met so many years ago and now only speak with occasionally, though we once talked every day. He was the one to hear the news and call, crying. No words, just sobbing because that said it all. I cried under cover of his tears, safe because I couldn’t hear my own.

Then there is the woman I knew only for one summer back in California when together we learned to cook like adults, follow a recipe, peel a mango. She flew to me in Oregon, made her super secret special cake, and promised to stay with me until the end and hold my husband’s hand at the funeral, whenever it may come.

Seven years ago, I met a girl in a karaoke lounge in DC, and we sang Britney Spears (ironically, if that’s what you need to believe to keep reading this post). We both moved, sometimes to the same cities. We campaigned together, hit all the vegan restaurants we could find, and lounged in parks with a pile of books. She stayed up late for a month after my diagnosis to answer my desperate 2 AM phone calls. She’s coming to visit this weekend.

Last month, my in-laws moved across the country to live five minutes away. My mother-in-law feeds me pills in yogurt so I don’t choke on water and helps me clean my teeth. Then there’s my father-in-law, who brings me desserts several times a week to keep my weight up and once spent a whole day assembling my hospital bed.

And last in this post but not in my life, the aunt and uncle who surprised me by sending a box full of starfish. They live at the beach where my family went on vacations. They must remember how I couldn’t end a week at the beach without bringing a starfish home. I brought a starfish with me when my husband and I moved 3,000 miles away to remind me of my childhood, but one night Malka ate it for reasons we cannot fathom. Receiving these new starfish reminded me that I and my precious past are not forgotten.

Allowing my mind to linger on these winter stars introduces some happiness and gratitude to my swirling thoughts. They are more leaves in my river, floating alongside and softly nudging the painful ones. They make it easier to unclench the fist I made around that first sour leaf, to let it go and trail my fingers in the water to feel whatever the current holds. It drifts on, benign and unremarkable.

After all, it’s just sadness.

The Luckiest (Wo)Man: Ales for ALS

Check out this Father’s day brew kit. It’s part of the Ales for ALS program. A few months ago I was trying to decide what I wanted to brew and when I saw a kit with the Ales for ALS logo, I knew I had to do it. Cheers, this one is for you Rachel! – Cookie

The first thing I knew about Cookie was that he had a tattoo. At least, that was the rumor going around our study abroad group as we prepared to leave our college and head to Russia for the summer. At 19 years old, I thought a tattoo meant Cookie must be a pretty tough guy, so when we ended up on the same plane, I was a little nervous. I quickly found out, though, that he lives up to his nickname. One the first leg of our journey from NYC to St. Petersburg, we had not slept for at least a day, and he was still in a good mood, laughing and making friends under the brutal fluorescent lights of the Frankfurt airport. I don’t think I ever really let him know how much I liked him – I was pretty shy – but he always lightened the mood, and that was important when traveling with a small group in blistering heat.

I still remember everyone leaning against a giant statue in Novgorod, hoping for some shade and whining loudly. Cookie pointed out that all the shade was under the trees, but we ignored him and stayed on the path. He shrugged his shoulders, strolled across the lawn of the cathedral we had just toured, took off his shoes, and threw back his head, opening his arms to enjoy the cool shadows. I took a picture of him and remember thinking, “What is so scary about taking off my shoes, walking off the path?”

That sums up who Cookie is. I have remained friends with him for ten years and although he lives far away, he has been unwavering in his support of me as I battle ALS, so although I was surprised to get the message about Ales for ALS from him today, I really shouldn’t have been. He is a true friend, and I am so grateful that despite time and distance, he is on my team.

Today, I learned though Cookie that Loftus Ranches and Hopunion created Ales for ALS to support ALS research:

“They have offered participating brewers access to a proprietary hop blend, free of charge, in exchange for participation in Ales for ALS™. Each brewer will brew special beers with these hops and will donate a portion of the sales to ALS Therapy Development Institute, the world’s leader in ALS research” (http://www.alesforals.com/).

Cookie had a great time brewing and listening to his favorite Russian brewing song. He has more than done his part. Now let’s do ours. Either brew some Luckiest Man Pale Ale for yourself, or find a participating brewer near you, gather some friends, and beat the heat with Ales for ALS!