Curses

ALS TDI announced a new fundraising campaign this week, and I think it’s a great one. Swear2Care asks people to put their money where their foul mouth is by donating a dollar every time they utter a curse word. I’m a sucker for clever taglines, and so I really enjoyed this one: ‘Cuss ALS Research Matters. That’s good stuff.

As an Ambassador for ALS TDI, I joined a call last night to discuss the campaign, among other things. The F bombs were dropping like…well, like any kind of food I try to hold in my hands these days. By the end of the meeting, we all owed the campaign quite a bit of money. And that’s the point. As the Swear2Care website says, ALS triggers a lot of emotions. It’s hard to talk about it without getting heated up, so let’s use this to our advantage.

I love to swear. I think a well-placed F-word, for example, can be just as effective as the impressive sounding vocabulary words I learned in college English. It’s a helpful form of self-expression, and even the experts agree. TIME Magazine printed a story in May 2014 about how swearing can actually be good for you. Read More>

|Categories: Cure, Parenting, Research | Tags: , , , | Permalink

Flying Solo, sort of

Sometimes it’s hard to remember that ALS is a rare disease. It is such a huge part of my life now, and I know so many people who have it. But here we are on Sunday morning, at a beautiful dog park right on the ocean, and mine is the only wheelchair. Seriously, there must be hundreds of people here, and they all seem to have calf muscles. I smooth my dress over my knees with cramped hands, as if it will somehow hide the atrophy. As if I will somehow look like the rest of them.

There’s no point to this vanity. At the moment, I’m sitting in the car while everyone else in my family takes a walk, because even in 60° weather, I get so cold near the ocean that I’m like a ghost. The slightest breeze blows straight through me, rattling my bones. Even wrapped in a scarf, sweater, and jacket, I often shiver as I wheel down the paved trail, surrounded as I am by a weather pattern that radiates from my own damaged spine.

So today, I’m staying put. But it was worth coming, because from where I sit I can see that the ocean and the sky are nearly the same color, and I take a few minutes to try to figure out where one ends and the other begins before I realize it doesn’t matter.

All of these other people are walking by and shedding layers, because their bodies are moving and working under the sun, but for me sitting in the wheelchair, expending almost no energy except for what it takes to breathe, it’s just not as much fun. This is a beautiful area, but the first time I came here I was so depressed I hated it. It seemed like the best place to go running, a cruel joke, and I couldn’t bear my inability to lift my legs and take off. Now we’ve been here so many times. I’m used to it, and it doesn’t make me sad anymore, but sometimes I’m just not up for it.

Ironically, now that I’m stuck in the car, I feel too warm. The sunroof is open, and I’m wearing a sweater and Uggs, perspiring in my own little Honda hothouse. I recline the wheelchair to get my face out of the sun and immediately feel better. Lulled by the sounds and voices of people walking by, I close my eyes, catching snippets of conversations and turning them into light dreams.

“I told her it wasn’t her fault, but I could tell she didn’t believe me… I mean, it kind of was her fault.”

“I love coming to this place. Sometimes you can see dolphins. God, I’m so hungover.”

“Alex! Alex! ALEX!” This part was not relaxing.

Then again, sometimes I love the dog park. When the sun is shining and I can find a place protected from the wind, I stop for a moment and turn my face up for warmth. The problem is we’re still at a dog park, and some of the conversations make me feel like a character from the movie Best in Show. Everyone loves Otto, constantly commenting on his looks, his agility, his new purple collar. Obviously I, too, am a fan of Otto’s, even though he is becoming a raging humper and countertop food thief. But I am a new and ignorant dog owner. I can’t hang for the real conversations, I don’t even know the lingo. Rob has this move he does, where he’ll start a conversation with someone, and then sort of wander off, leaving me, the sun seeker, stuck to talk about puppy things.

Not today, though. Today, for me, it’s a nap at the beach and visions of flying like a bird through that sea colored sky.

|Categories: Life, Meditation, Relationships, Vanity | Tags: , , , | Permalink

Stories

Today when I woke up, my hands felt different. Weaker. It reminded me of when my feet started to get weak, the effort to use them exhausting and involving muscles that you would think have nothing to do with feet. It was like that today, with my hands, as I moved them clumsily to drive my wheelchair. I could feel the muscles in my neck working to help. I tried to observe it from a distance, an impartial witness to an odd bit of impotence. I don’t know if the losses get easier or harder to deal with, and the answer is probably a little bit of both.

Sometimes I tell myself I’m just tired or cold, two things that affect my strength to shocking degrees. And I am tired. We had a nice time in Healdsburg, a little town nestled into Sonoma County, a wine wonderland. But both Rob and I forgot about packing my foot braces, and so the nights were uncomfortable, requiring near hourly adjustments. It was miserable. The days were rainy, so that Scarlett couldn’t swim in the pool, but we had fun taking Otto out into the vineyards to run around and act – – finally – – like the hunting dog he truly is. Although he didn’t successfully hunt anything (phew!), he was driven nearly crazy by the birds and the new smells, and it seemed like he was trying to run in every direction at once.

We knew it would rain and had debated not going, but both Rob and I felt like it would be good to get away for a while. Despite the long nights, we were able to spend two days together just wandering, spending hours in the bookstore. Read More>

|Categories: Life, Progression | Tags: , , , | Permalink