Category Archives: Faces

The Human Condition

I’ve been trying to write a blog post for the past week, but all that comes out are the ramblings of a crazy person. It’s been so hard to collect my thoughts, and I’m not sure I’ve done it here successfully at all.

Case in point, I’d like to start with a completely random digression. I’ve known a few crazy people in my life. The woman in my college town who yelled at canned goods in a bus stop alcove. The guy in the same town who used to stand outside the bagel store in his Delta Gamma sweatshirt (according to him, he was a member of the sorority), hassling frat guys and flirting with girls. When I went in to grab a cup of coffee and a bagel, he would sit with me and talk about his upcoming wedding, which was probably imaginary. But it was a welcome break from studying. Everyone called him Scanner Dan, I guess because he used to count things. Dan was short, bearded and far older than the average person that I encountered on State Street. He would sit across from me at a round table, his grubby fingers and greasy hair setting him well apart from the rest of us. Still, he was a part of the college experience. The word at UW Madison was that there was a psychiatric hospital across the lake and that when people got out and went to halfway houses, some of them just started hanging out on campus. It makes sense, I suppose, and is probably something I could confirm with a quick Internet search. But there are crazy people everywhere. Anyway, I don’t think I’m one of them, I just think my latest unposted blog efforts have seemed a little… unhinged. Read More>

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Life and the Living

I know that everyone dies. I’ve known this for as long as I can remember, since I was a child and I had nightmares of losing my grandmother, a woman who will turn 90 in August and remains sharp and active, a fact for which I am grateful.

It’s not that I want to fight death and aging, the way the characters did in Gary Shteyngart’s great Super Sad True Love Story. People are born, and people must die. And in between is the living, with all of the happiness and suffering it entails.

Sometimes I wonder who I think I am to ask people to rally around a cause just because it affects me and my family. Everyone has their issues. And in many ways in my life, I’ve been far luckier than most. Still, I want more time. And I want more quality time, not time spent feeling my body get weaker and my abilities abandoning me like sailors leaping from a shipwreck. I have to remind myself that I’m only 37, and that this is not old, despite the way my body looks and feels. That it’s OK to wish for more time. Read More>

|Categories: Diagnosis, Faces, Life, Progression, Relationships | Tags: , , | Permalink

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