Category Archives: Age

Vignettes

An update on #whatwouldyougive:

$115,556 raised
60 fundraisers
1208 donors

You can see pictures here at our Instagram account, and it’s not late to donate or to join the team!

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I think I should take a shower. Actually, I know I should take a shower. I haven’t showered since Monday,  and there’s really no excuse for it, except for the fact that I haven’t had any time. And so my hair is dirty, and it itches, which is particularly frustrating for someone whose hands can’t reach their head to scratch. I have solved the problem by rubbing the back of my head against my loaner wheelchair — because my own wheelchair is back in maintenance — and this sort of works until I become disgusted by the fact that I am rubbing my head against a loaner wheelchair and I have no idea who was sitting in it before me.

I am not disgusted enough to stop using the chair to scratch my head. Read More>

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>

Tossing Corn

My friend Corey Reich has been living with ALS for nine years. Corey’s symptoms started when he was away at college, and he recently turned 30, a milestone he said he wasn’t expecting to meet.

I was introduced to Corey through our doctor, who told me that this was a family I should get to know. He was absolutely right. The funny thing is, neither Corey nor I ever go to an ALS clinic anymore (a topic for a future blog), but our families still get together every few months. Corey is an Oakland A’s fan, a tennis coach, and a lover of good food. He and his family are awesome, and they should get to be together for a long time. Read More>