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Extreme Illness as Mitigated by a Mouthful of Cat Food

June 7, 2010

In the beginning of May, I wrote about my sister Beth who was very sick with pneumonia. I wanted to post a little more about that, and an update.

People with ALS develop a lot of goddamn problems, to put it mildly, but what they ultimately die of is respiratory problems. Choking, pneumonia or simply a failure to be able to complete the breathing act successfully are all problems that can lead to death. So when we heard a diagnosis of aspiration pneumonia, it came as serious news.

Beth entered the hospital during the second week in May. She was exhausted, in pain, unable to keep her eyes open, and she had a bad cough. Imagine yourself with a bad cough. Now, imagine how you would change your position (ie, sit up) in order to cough more productively. Well, that’s not an option for her.

I’d flown from Texas to see her, and thought I was prepared for this bad bad thing. As it turns out, I wasn’t. She had an oxygen mask on with something called a “nebulizer” which was spewing a fog of moist air as well as breathing medicine, and I felt like it was between us.

“When will she take that off?” I kept asking when I arrived, since this thing covering my sister’s face and making all of this noise made me feel like I could communicate with her even less than usual: it kept me from seeing her expression. It turns out that Beth’s most salient quality, in my estimation, at least, isn’t isn’t her gabbiness, or her love of swimming, or knack for buying someone the best present they’ve ever gotten. It is her desire to engage with other people. And so to me, when she can be amused by something, or annoyed by something, and you can register it in her eyes even if she is not emoting anywhere else, everything can seem semi-normal, for chunks at a time.

I was told that she’d keep the mask on indefinitely.

ALS has taken a lot of things from her: walking, talking, hugging, eating. But we can look at each other and share a moment. It has felt like the relationship had been boiled down to the essence, but that the essence was still there: when I can see her eyes, we can communicate. But then along came the pneumonia. And you know, the pneumonia was stripping away her ability to engage, and also, her desire to.

So I found myself thinking, all of the fun is over. When I was with her, we listened to some podcasts and mostly just hung out and held hands while she agitated trying to communicate how she could be made more comfortable, which was impossible to understand, or she dozed in and out. I didn’t manage to bring an amplification device, so I turned up the volume on my phone full tilt and we’d listen. We’d get interrupted all of the time, by a need of hers or by a nurse or a doctor, but it didn’t seem to matter since the experience of being together was so fractured anyhow. A podcast wasn’t really going to help pull it all together.

But after a few days, she stabilized somewhat. I had to come back to Brooklyn for various reasons, so I left late on a Wednesday, and that day before I left, the nurses removed the oxygen mask. When I returned on Saturday, she was a different person. No more mask. I was there on Saturday evening when our aunt and uncle arrived.

Judy and Harvey visit a lot. I’d seen them earlier in the week when Beth was feeling so ill, and during that visit, they’d told me about taking a cab to the airport to save on long-term parking. The cab came late and when it finally arrived, there was a huge blood spot covering one of the only two sittable seats in the car. They didn’t want to disturb forensic evidence, or get their traveling clothes dirty, or miss their flight, so they simply covered the spot with a newspaper and then sat down. Further hijinks ensued. When they were telling the story, I kept looking over at Beth, who the story would have had in fits, but she was asleep or too out of it from pain medication to enjoy it.

our loving uncle

But when I returned the next Saturday, we were all listening to our Uncle Harvey explain, rather fondly, how his adult children had once tricked him into a eating a handful of dry cat food. They’d come upon a sample packet of catfood that looked eerily similar to a packet of peanuts. They’d banked on him arriving home and stopping at a certain spot in the kitchen, in order to chat with them. They’d foreseen his level of distraction and constant low-level desire for peanuts, and assumed he’d take the bait and grab the bag if they put it in a certain spot. He described how he opened up the little bag shook some into his hand, and then popped it into his mouth, handful-of-peanut style.

He mimed the physical sensation of all of the moisture in his mouth being leached into the dry catfood, leaving him with a puckered effect and a mouthful of unswallowed, uh, cat food. And suddenly Beth was laughing hysterically. The laughing was making a foreign noise, one that had the nurses running in to make sure she was all right, but the terrible fog had lifted. She was as all right as she will ever be. And just like that, it was clear that the fun was not over. Bring on the stories: Beth was enjoying snippets of life again.

In the time since, she’s been discharged from the hospital. Being decreed too well for the intense and expensive care of the hospital, and yet still too in need of nursing care to be safely at home, she’s currently at a relatively, all things considered, lovely nursing home with good professional care. Don’t get me wrong: the fact that my 43-year-old sister is currently in a nursing home makes me want to vomit. She’s not so crazy about it, either.

Our mother worked like heck to get her into this good place with great staff and lovely grounds and I was even able to *take her outside* last Sunday. That is absolutely amazing. Despite the intense dedication of many staff people and family, it simply hasn’t been possible to do that at home. (Her home had been modified with a stair chair, but she can no longer safely use that to get downstairs. And while she has a lift to get her out of bed, she doesn’t have a wheelchair she could get into that would fit back through the door frame.)

That’s one reason ALS sucks so much: all of the best planning is worthless when a person’s physical condition shifts yet again. It’s like quicksand.

As for that week specifically, and for the last 3 years generally, thank you to everyone for their thoughts and calls and e-mails and good wishes.

I read recently some advice: if you are ever considering calling someone who is having a hard time but are afraid of being intrusive or bugging them, err on the side of intrusion. No one has to answer the phone, but knowing that you’re thought of can make all the difference. We are all alone, aren’t we? But the phone ringing can sometimes give us the welcome illusion that we are not.

Thanks to foxypar4 for use of the photo, released under a Creative Commons attribution license.


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5 Comments leave one →
  1. June 7, 2010 5:48 pm

    What an unbelievably horrible business. I don’t even know what to say. I’m glad that Beth is back as much as she can be, and I’m glad for her that she has you as a sister.

  2. June 7, 2010 7:52 pm

    Oh, #$%&*@#%$&!
    and HUGS.

  3. frankly manny permalink
    June 7, 2010 9:05 pm

    you’re sweet and funny even and especially when being either of those, let alone both of them at once, must be extremely difficult.

  4. Michelle permalink
    June 7, 2010 11:52 pm

    Even as you write about the awful realities of the situation, Beth shines out, whole, lively, and as present as ever, and that is the loveliest possible thing – a tribute to your talent and love, and to her.

  5. Becca V. permalink
    June 14, 2010 8:56 am

    just saw this.

    your writing is beautiful, the situation is horrible.

    not sure what more to say, but in the spirit of your post, just wanted to let you know i am thinking about you.

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