Third Wheel

March 11, 2014 at 1:13 pm (Uncategorized)

It’s hard to be practically useless. My left foot has been stuck in a cast for the last two weeks, and I’ve got at least four more weeks to go in it. I could deal with gimping around in a cast, but the doctor who diagnosed my latest sarcoidosis-related stress fracture also forbade me from bearing any weight on my broken foot. This means I’m on crutches or my spiffy rented knee scooter for the entire 6 weeks.

My conveyance for the next month

My conveyance for the next month

Here’s a short list of the things I can’t do when confined to the cast/crutches/scooter: drive, move while holding anything in my hands, go outside when it’s snowy or icy, take a shower without a plastic bag on my foot. Here’s another short list of the things that are difficult to do: go up and down stairs, cook, move anywhere quickly. Andrew and I have had to rely on Jay to do everything on these lists. Though they are short lists, they encompass almost every detail of daily life—especially life with a young child. Jay has been doing all the dropping off and picking up at school, all the cooking, all the dishes, all the laundry. He already does so much under “normal” circumstances, when I’m “just” sick with a chronic and unpredictable illness. Did I mention he also has a busy and stressful job that often requires he work extra hours?

I’ve mostly done a pretty good job of accepting that this is our reality—for the short term. I say “thank you” to Jay at least fifteen times a day. When he has to skip work to pick up Andrew or take me to an appointment, I try not to feel too guilty and simply express my appreciation to him. I figure that having a nervous breakdown about feeling useless isn’t going to make Jay’s life any easier.

Then, last Friday, we upped the ante. Long before I learned about my broken foot, we scheduled Andrew’s 10th birthday party with his friends. Andrew decided that what he wanted most was a sleepover party with four of his closest friends. He thought it would be fun for them to play some basketball and go swimming at the gym after school. Then they’d come home, eat a three course Mexican meal, hang out downstairs playing video games, and bash a piñata.

There was not much in Andrew’s itinerary that allowed me to help. When five boys came rushing into the house, hungry, after a couple of hours at the gym, I couldn’t greet them with food, as I normally would. When five boys got a little rambunctious downstairs with our giant stability balls, I couldn’t run down there and sort things out. When it was time to round the pack up to get ready for bed, I couldn’t do much but roll around behind them.

Still, I wanted to be helpful. But I couldn’t actually be helpful. I felt left out and agitated. All I could do was “suggest” Jay make the second course of the dinner a little more quickly than he was, or intervene a minute earlier when we heard an ominous crash from downstairs. In other words, I hung around the fringes of the party being a grumpy nag. “Just go lie down and rest your leg, sweetie,” Jay kept saying. But I wouldn’t. I couldn’t. My son was having his 10th birthday party, and I was going to be there and I was going to be helpful, so help me God. Later I apologized to Jay, for the nagging and my emotional disintegration. “It’s hard not be able to help,” I told him, “Especially when it involves your kid.” He forgave me. And I thanked him for the seventeenth time that day—for the hundreds of things he did for me, and for throwing such a lovely party for our son.

Surviving in Chronic Town—surviving in any town—means accepting help. As much as we like to tell ourselves that we’re independent, that we can do it all on our own, it’s just not true. In many ways, sarcoidosis has helped me accept my humanity. Before I became sick, I was very invested in being strong, in doing things on my own. All it takes to shatter this myth is a broken bone or a messed-up immune system—or having a child. We can’t go it alone. It truly does “take a village”—to raise up a kid, to survive sarcoidosis, to make it through the day. After 10 years in Chronic Town, I’m still learning to just say “thank you” when someone who cares for me provides the sustaining help I need.

Thank you Jay, for keeping me alive, for being my best friend.

What about you? Is it easy for you to accept help?

4 Comments

  1. Allyson Cooper Russell said,

    Asking for help and accepting help are both very difficult. I’m trying to teach my kids that it’s ok to do both!

    • Rebecca Stanfel said,

      It IS hard, so I think it’s great you are starting your kids on these lessons early!

  2. Randy Bekkedahl said,

    Hi Rebecca,
    Thanks for sharing your struggles and triumps in Chronic Town. I always look forward to reading them. And you ask good questions. For me, I still struggle with asking for help. So I know just how you felt. Daily my wife has to help me dress and undress, put on shoes, put on coat, that sort of thing. And I always make sure I thank her, but it seems like not enough. And then with the sudden melting of all the snow, our basement that we rent out got water in it under the door. A real emergency and here I am basically worthless to help. My poor wife had to handle it herself. She does it without complaint, (for which she should be guaranteed entrance to heaven) and we got through it, but I was so angry, not that it happened, but that I was useless to help. Somehow the universe worked some magic in giving us wonderful renters who not only put up with the hassle, but helped us immensely. It’s a strange contrast, grateful on one hand, mad on the other.

    Randy

    • Rebecca Stanfel said,

      Hey Randy,

      Sorry it’s taken me so long to respond to your comment. I took a bad fall and have been stuck in bed–feeling helpless and useless. You do such a great job of bringing to life what it’s like to need help with daily living. Like you, I am always sure to thank my spouse for his help with the hundreds of things he does every day. But I know what you mean. It just doesn’t feel like enough. Jay would say it is–and he doesn’t mind, and I bet your wife would too–that we add to life in our ways, which aren’t maybe that practical but equally valuable. But it’s hard. I know what you mean. Hang in there.

      Rebecca

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