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!

Wheels

My enunciation is getting rough. The letter “s” is my particular nemesis. I slur and lisp so badly, I have stopped using plural forms, and I avoid contractions. This afternoon, though, my sloppy “s” saved the day.

By 4:00, it felt like everything that could go wrong had already happened. A scheduling error left me without a caregiver, Pickle threw up after eating too much of the food that our parrot Jasper enjoys tossing to him, and the taxi I had booked way in advance never arrived to take me to a doctor appointment.

However, I didn’t want to end the day this way. I simply refused to let the sun set on this note. You see, I have a mindset that has led to me being labelled naive and unrealistic, but I can’t seem to shake it. I suffer from a relentless optimism, a belief that it is never too late for things to get better. Maybe that really does make me naive, but I like to describe myself with such words as “resilient,” “resourceful,” and “dauntless” instead.

Consequently, when my new cab arrived bearing a kindred spirit, I was delighted but not surprised. Every day holds some shred of happiness if only you remember to look for it. Doju, my driver, also had a rough start to his day. The cab he usually drove was out of commission, so his boss saddled him with the taxi outfitted as a wheelchair van… a vehicle full of equipment Doju had never seen before.

Anxious not to mislead me, as soon as he parked at the curb, he confessed, “I’ve never worked with a wheelchair van. I don’t know exactly what to do.” His anxiety aggravated his speech impediment, and I could tell he was now embarrassed on multiple fronts.

“That’s OK,” I replied, not bothering to hide my slur over the contraction; you have to be willing to give if you’re going to get anywhere important. “Let’s figure it out together.”

And we did. Rather quickly.

We fell right into conversation once we hit the road. His stutter grew less pronounced as I waited with patience to hear him out. He got the hang of my own impediment, and then it was easy to talk and listen. We shared chocolate chip cookies I had in my purse (welcome to my life in the Clinic weight maintenance program; must love calories), and relaxed into one another’s company. It ends up Doju has a wicked sense of humor.

“Rachel, you are just great. Here’s my card. Call anytime,” he said.

“You are so sweet!” I replied, taking his card.

“Oh, no, you misunderstand,” he grinned. “You may call me anytime, but I never promised to answer. I think I will see your number fill my call log and just click delete, delete, delete…”

It ends up both stuttering and slurring disappear in laughter.

Stuck in traffic, I learned he had been born in Tibet, but was whisked away so quickly to a safer patch of earth that he cannot remember his home. Despite this, and knowing he can never return, he chose not to tell his story as a sad one. Instead, the tale he shared was about love and accepting loss. I was amazed, not for the first time, at how deeply our most distant brothers and sisters can speak the language of our own messy hearts.

Traffic crawled, and I knew I would miss my appointment by a half hour, but the day was still salvaged in my eyes. As we sat on the glimmering hot road, Doju marveled at the brilliant sunshine after such a rainy spring. I pointed out the riot of colorful flowers spilling out of gardens lining the street.

There were so many words neither of us could manage to say, but still, we chose to speak to each other. We chose to see roses.

Don’t Talk-A-Thon: Part 2

Hello all! I’m already impressed, touched, and overwhelmed by your stories of how your hour of silence went today. I would LOVE to share your stories of silence; it would be amazingly powerful to have them all in one place. Please consider sharing your experience below. If you are not able to spend an hour in silence today, go ahead and share what you would miss or fear if you were stuck in silence. Your empathy can move mountains and inspire ALS awareness!


I didn’t speak for an hour and it wasn’t all that easy… My mom and I were sitting at the kitchen table having coffee reading the paper and being silent. Every once in a while a word would almost come out and I would catch myself. I was mindful of the fact that this Made communication so difficult especially with someone else in the room. A lot of other emotions such as frustration and anxiety. Rachel is so brave and I grieve for her and for Evan every day but at the same time I remain hopeful that one day there will be a breakthrough, the one we all are waiting for.” – Renee (my mom!)


I had planned on taking the vow of silence, but my husband’s feed tube had an issue, and I needed to speak to our hospice team. But that then brings up they thought of, what if he needed to communicate the issues to the team? How frustrating and difficult it would be. So even without taking the vow, I know the horror he would have to go through. ALS may cripple one person’s voice, but thankfully, there is usually a village to roar for them!” – Glynis, author of Life After ALS: A Caregiver’s Journey


“I participated today. I occupied myself with reading a new book next to Harley on the bed, and to be honest it was hard. For one, I drifted off for 5-10 minutes, and it was hard not to talk to Harley, as I normally would, as I petted him with one hand and held my book in the other. At first, I was frustrated by my forgetfulness, but then I reassured myself the whole point was to think about what it would be like if I couldn’t verbally express myself. I was ‘trying on’ silence and checking myself in the mirror, so to speak. I did share my mission with a friend this morning at church, and it moved her. So I don’t win any awards today for successfully keeping silent, but my intention was pure.” – Mitzi


I wasn’t able to do the hour of silence today but if I did it would be so difficult to not be able to tell my family I loved them.” -Sarah

 

 

 

 

Love and Dirty Dishes

It’s scary to show people just how sick I am. I let visits go way too long to avoid cutting people off or kicking them out, then end up exhausted with worse speech than ever the entire next day. I feel so guilty cancelling plans; after I do it enough times, I am sure I’ve become too unreliable to deal with. There are some people, though, worth being vulnerable for if it means keeping a friendship going and growing. They make it safe to be weak.

I knew I was feeling awful when I agreed to a cooking date with my friend Brandi last night, but I had already cancelled on her a few times and I hadn’t seen her in 2 weeks – the longest we’ve ever been apart since meeting last year. She came in, hugged me, got to work chopping, and I reclined my wheelchair while she updated me on her latest adventures. I ultimately could not eat the amazing food she made, but that was fine. We talked about books and listened to music while I dozed on and off.

Part of me hated that she was seeing me droop in my chair like a wilting flower too weak to speak, but the part of me worth listening to focused on the sounds of dishes gently clinking in the sink as she tidied up. It was so normal. This is my new normal. I am not the one washing dishes anymore, and I feel some shame over that. However, I have learned there is beauty in vulnerability. I know now that love can sound like familiar, gentle hands scouring a dirty pot.

Brandi, this song is for you.

woman-woman

Woman, Woman by AWOLNATION