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daily bread / daily dread

December 7, 2009

Not much time recently. My work schedule has been in upheaval, and whatever budgetary inconveniences this entails, it does means more time with my son, which is a huge and lovely bonus. It also means I can make midweek trips to see my sister, who is not doing well.

I keep struggling to express the multi-dimensional aspect of grief, or pre-grief, or however this state I’ve been in for the last 2.5 years should be categorized. I sway from being sad; to being angry that I can’t call my sister to complain about, or laugh about, new parenting challenges. Often I feel normal, but when something suddenly happens to remind me of the gravity of the situation, I’m shocked back to my place of sadness or grief or whatever, where I stand at attention until something joyful or even just daily beckons again.

My sister can’t wander from it — why should I be able to? One good thing about siblings is that like it or not, you’ve learned to share. But one bad thing about a physical problem is that you can’t share.

There is a living-on-edge aspect to these times. When the phone rings early in the morning, I panic. What if this is the call. When my parents call to tell me about some trip to the hospital via ambulance, or a further decline, I’m generally hit with the ultra-sad realization that I’M NOT PAYING ENOUGH ATTENTION through all of this. And to me, this seems unfair to my sis, who cannot ever escape the situation, but then also scares me that I’m living in some sort of denial. And that if I don’t try my hardest to get used to this now, I will pay for it for the rest of my life.

Yes, I am in therapy. I pay someone $110 / 50 minutes to remind me that you cannot live with the constant loom of death’s breath tickling your neck. You sometimes get distracted. And that is ok, according to her.

But every time I see my parents’ phone number show up on my phone — or worse, my sister’s — I suck in my breath and wait for terrible news.

Sometimes, my family even forgets to tell me terrible news. I had already been visiting for a few hours the other day when I overheard my parents telling some a caretaker who’d called in that Beth’s feeding tube was clogged. This was for the second time.

The first time was Christmas Eve, and my mom had told me by phone. (We Brooklynites were sick and had put off our visit.) It meant a trip to the hospital via ambulance, but only after 4 days of living on nothing but an IV. (Living on a feeding tube is bad enough.) She went to the hospital, oddly cheerfully, actually. I think that getting out of the house . . . EVEN IF IT MIGHT ENTAIL SURGERY . . . is a good thing for her these days. They unclogged it but when it clogged a second time, two weeks ago, was when people forgot to mention right off that there was a problem. It just shows that you can become desensitized. Even to really bad stuff.

She’s since had it replaced. Getting one replaced, by the way, isn’t nearly as much of a production as getting one in the first place.

4 Comments leave one →
  1. February 14, 2010 10:56 pm

    I am so sorry that your family is going through this horrible ordeal. Such an unimaginably cruel disease! Please let me know if you are going to do another ALS walk–I'd love to join in.

    • March 6, 2010 11:03 am

      Yay Alexis! We are going to do another walk in NYC in May, I think. The kickoff meeting is in a few weeks, after which time I will have more details. Are you allowed to leave Taconanah? It would be so wonderful if you could walk with us!

  2. February 21, 2010 6:05 am

    Gosh, Meredith, so hard for you and of course so hard for your sister and her family. I don't understand these sorts of things. Thinking of you . . . Amy

  3. wallflower3000 permalink
    July 11, 2011 8:52 am

    Still sobering to revisit. Thanks as always for sharing.

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