Category Archives: Vanity

Hands On

I have bright purple nails. They will last for at least three weeks, and probably longer. It’s just regular nail polish, not the gel or no-chip kind that is supposed to withstand the tsunami of running a household. I don’t need that kind anymore. When I used to wear regular nail polish, it would chip within two days, helped along by my fluttering fingers that were always in motion. But now, it lasts forever. I don’t cook, I don’t clean, I don’t bathe my child or wash my own hair. I don’t even have the energy to pick at the polish the way I used to, and so my hands always look nice now, my skin soft, the nails short and square. Thanks, ALS.

Sometimes it’s nice to have other people do things for you. I’ve always liked getting my nails done, as opposed to doing them myself. And I’ve never cut my own hair… Wait, I take that back, I did once cut my own hair in my early 20s by putting it in a ponytail and lopping off the tail part. That was pretty satisfying in an I’m going to regret this later kind of way.

But there’s lots of self care that’s just better to do yourself. Flossing, for example. I know I should consider myself lucky that I have an assistant who is willing to floss my teeth, and I do. But still. Read More>

|Categories: Age, Cure, Drugs, Faces, Life, Progression, Research, Vanity, Venting | Tags: , , , , , | Permalink

Living with ALS, Laughing Anyway

Today I read a short piece of fiction by Langston Hughes, and so of course now I feel like I can’t write anything.

“…the laughter bounced, like very hard rubber balls, around the room, not like tennis balls, but like solid hard rubber balls, and Marcel laughed, too.”

That’s so good. The sentence is almost tactile, I feel that I could be hit by that rough laughter, or that maybe I could catch it in my hands, turning it over and over and studying it.

I’m here today, but I’m under several layers of fog. I haven’t been sleeping well, and last night, I found myself shivering so hard I thought that I would seize up. My teeth were chattering as if I was in a cartoon. Rob covered me with another blanket, but I kept waking up, feeling hot and trapped. This morning, I was so tired, and my weakness was so pronounced, that I thought well, we can’t ever let that happen again. As if I even know what the problem was.

And so today, everything feels difficult. My tongue is slow in my mouth and breathing is like ducking my face into swamp water. When I laugh, it does not bounce like hard rubber balls. It sounds like silence, and lands like cotton balls. But I did laugh, earlier, when I was on the phone with my sister. I could feel the laughter in my neck and my chest, trying to get out normally, not quite succeeding. Read More>

|Categories: Life, Progression, Vanity | 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