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. And how about eating? I know that when I think it’s hellish to be fed by other people, I need to remind myself that the real definition of hell would be not having enough food to eat. So I’ll stop short of saying it’s the worst thing in the world, and just say it’s not very much fun.

I miss washing my face. No one does it the way that I used to. I miss putting in my own earrings, and applying mascara in brisk upward microswings, as though I am conducting a tiny orchestra. I miss taking a shower, a real shower by myself. I miss brushing my daughter’s hair. I remember when she was a toddler and I would put it into three tiny little buns. It grew so slowly we called her Baby Robert Duvall.

Touch. I never touch anyone anymore. I am touched plenty, by the hands that help me stay alive and clean and cared for. But I had a moment last night, when friends were over for dinner, and I looked at the back of Rob’s neck, and I thought I used to give him back rubs. I used to hug him when he got home from work. I used to take my daughter’s face in my hands and rub my nose against hers. Now I can’t even pat my dog on the head, and sometimes I wonder if he thinks I’m mad at him, because who just sits there and never reaches out?

There is such a huge difference between these ways of touching, of being touched. I am happy having someone else maintain my nails, and I am adapting to someone else piloting a toothbrush around my mouth, but it will never be OK with me that I can’t run my fingers down my daughter’s back.

I chose purple for my nails, because the color always cheers me up. Today is a good day. In fact, this week is so much better than last week that it is remarkable. Maybe next week will be even better. But with ALS, even on the good days, you can’t help remembering what good used to mean.

Tomorrow night, HBO is airing an episode of Vice called Die Trying. Several of my friends are in it: Angelina Fanous, Beth Hebron, and Matt Bellina are all young people with ALS. They all have their good days and their bad days. They all want to live, just like I do. Check out the show at 11 PM, or if you’re like me and you can’t stay up that late, record it and watch it at a reasonable hour like the elderly individual you are. But do watch it, because what these guys are pushing for would cheer us all up a lot more than some purple nail polish.



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6 thoughts on “Hands On

  1. Joely Swenson

    I’d give anything to rub the back of my husband’s neck & shoulders. ALS downfalls that really suck.

  2. Kathy R.

    I am with Michelle “No Words.” Some of us have no idea what the small things can mean. I will continue to hope and pray. My husband passed away 20 years ago and was in the clinical trials for Rilutek. Sadly, no news since.

  3. Brad Rozmarynowski

    The courage and strength it takes to write those words is both admirable and enviable. I knew that you had those traits when I first met you many years ago at Bullfeather’s (my lord did we actually work there??). I adored you then for who you are and you haven’t changed a bit. That smile looks just as good as ever. Keep smiling.

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