“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.
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
How to Use the Shirt:
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!
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!!
Glacier National Park
Turret Arch seen through North Window at sunrise.
“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.”
“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
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.
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!
Only two more days until my Tobii Dynavox comes. I cannot wrap my head around this. I’m getting back the ability to text and talk on the phone. I will be able to write emails and blog posts at a more normal pace (right now, my fingers are a total mess, so I type like a snail).
Change is in the air, a wind is in the door. My voice is slipping away, and technology to replace it is stepping in. The arrival of my Tobii Dynavox will be an emotional time; I’m scared I will cry.
Technology is the answer until medicine cracks the mystery of ALS. I am thrilled with the Tobii Dyanavox I am getting, and I can’t believe even more advanced assistive speech technology is on the horizon. My favorite part of reading this post, though, was discovering that even in the testing phase, outreach efforts are being made to allow pALS who live far from clinics to use BCI. Even the most advanced machine is useless if it is not placed in the hands of those who need it.
This morning I tried to buy opera tickets as a surprise for Evan (he is a major fan), and all accessible seats were sold out. I know it’s not the end of the world, or even cause for tears. Operas are clearly a luxury. Still, incidents like this chip away at my loved ones’ assurances that I am not bringing them down. I remember the countless, tiny limitations hovering around me like a cloud of mosquitoes. I remember I can’t be the wife I was: the one who goes on romantic sunset canoe trips, holds hands with her husband while walking beside him, hikes with him in the afternoon, and goes stargazing in the park with him at night.
How I Live Now: Life With ALS 