Category Archives: Venting

Former Shopper

I used to love going to the grocery store. Cooking was one of my favorite things to do, and I relished trying new recipes, especially the ones that I found in my monthly Food & Wine magazine. I strolled up and down each aisle with my list, but I was always ready for inspiration to strike in an unexpected place, like a school of bright salmon fillets or a particularly beautiful bunch of colorful carrots. Inspiration also struck frequently in the ice cream aisle.

These days, I can’t stand going to the grocery store. It feels like a tease, like a promising place that you quickly find out has no breathable air. At our local Whole Foods, you park underground and take an elevator up to the food level. Of course there are stairs, those fancy flights from my past that are now beyond my reach. I roll through the store and I think about how different my purchases are than they used to be. I can’t summon up much excitement for selecting food that someone else will be cooking. So I don’t go to the grocery store if I can help it.

But I did go today, because my sister-in-law is in town to help and I have a policy against sending guests to the store alone. It seems somewhat unfriendly. Read More>

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Being a Baby

Rob is out of town this week, and my parents are here to help. They’re sleeping separately, my mom in the guest bedroom and my dad on the couch outside my bedroom, so he can hear me through my mask if I need help in the middle of the night. Which I always do. My body can’t stay in one position comfortably for hours on end, so somewhere around 2am I call out for an adjustment. Then again around 4. It makes me so unhappy to need this kind of help that I sort of act like a jerk about it. I’m not proud to admit that, but there you have it. Everyone around me is sleep deprived. All the time. But they seem to be handling it better than I am.

Let me tell you something that you probably didn’t know. You have not LIVED until you are an adult whose parents have to put you to bed. My parents have held this distinct honor for the past three nights. They stood over me, at the foot of my bed, wrapping Velcro braces around my feet to keep my ankles straight. I tried to close my eyes, wishing to be somewhere else, hating how this twisted disease is destroying all the normalcy in my relationships. I watched the two of them fussing over me, checking with each other on what to do next, consulting notes they’d made after a bedtime training session with Rob.

As this transpired, I felt my annoyance fade, replaced by a momentary flood of warmth for my mom and dad. As if maybe this is what it was like when I was a baby, their first, and they hovered over my crib, discussing what the doctor had advised, moving my little body to make it comfortable. I pictured my baby-self criticizing them for everything they were doing wrong. I saw how unpleasant (also precocious!) that would have been, and I tried to keep my adult-self silent as they wrangled sheets and smoothed a comforter over me. As my dad used a remote to raise my adjustable bed and fit the breathing mask over my face.

But it was still so hard, and my annoyance wasn’t gone for long. I’m not a baby, but in so many ways, I need to be handled like one. Yet I’m expected to conduct myself like a grown-up. I am straddling two worlds: an intellectual one where I’m still in control and a physical one where I’m almost completely helpless. It’s not compatible with being my kindest self, and usually the best I can hope for is to shut up and not make it worse by grumbling at the people who are trying to help me. I’m not good at this.

I don’t have the answers for how to make it easier to live like this. I just want Rob to come home, because I’m always more comfortable when he’s the one helping me. It feels somehow more appropriate, though it’s certainly messed up in its own way. I want my parents to enjoy their time—and their sleep—when they visit. To focus on grandparenting.

Being in control of my mind and my body is what would make me happy. Living only in one world, the one in which I can get up and walk away from situations that make me uncomfortable. In that place, I feel like I would be able to access kindness, that critical component to any relationship. That thing that I am sorely lacking at the moment. And the one thing that the people in my life really deserve.

|Categories: Life, Relationships, Venting | Tags: , , | Permalink

No Thanks?

Thank you. It’s a lovely, clean little phrase that everyone should use on a daily basis. I often have to coach my daughter to say thank you at the appropriate time: the end of a play date or when food appears before her or when someone says she’s cute (because, to this last one, she is historically more likely to respond with I know.) I work with her on this because I want her to be a successful member of civilized society, a place in which it’s important to acknowledge the efforts of others. And because, in theory, there’s nothing wrong with these two words when strung together and used to express genuine gratitude.

For me, however, thank you has become something more complicated. At this point in my ALS progression, I need help with almost everything. From the start of my day, when my breathing mask is removed, through meals which are always prepared by someone else and often fed to me, to a bedtime routine that involves being dressed in pajamas and placed back under the mask, I am uttering the same phrase over and over until it simply becomes a constant reminder of all the autonomy I’ve lost.

Of course I want to thank everyone who helps me for every single thing that they do. But imagine saying thank you out loud to yourself as you make your way through your day. It goes something like this:

Thank you (for getting out of bed)
Thank you (for putting on a shirt)
Thank you (for putting on pants)
Side note: etc. on the other articles of clothing, but you can avoid one thank you by not wearing underpants. Just saying. Read More>

|Categories: Life, Relationships, Venting | Tags: , | Permalink