Monthly Archives: June 2015

Unsent

Dear ____,
I was thinking of you today, and thinking of myself, too, in that sort of unattractive, self-pitying way I sometimes do. Don’t you just want your life back? I want my life back so desperately today. I realized something recently: spontaneous acts of affection are slipping away from me. Not all intimacy, that’s not what I mean. But the little things, the things that feel much bigger once they’re gone. To stride across a room and embrace someone just home from a trip. To reach out and squeeze someone’s hand, a quiet connection. Even to completely and totally invade someone else’s personal space while you’re watching television, so that for the duration of the show, you’re not quite sure where you end and the other person begins, and you start breathing at the same pace because it’s just easier that way.

If I could have full command of my body again, I would positively spin across the floor when the front door opened. I would take a bath, my toes flexed and my hair spreading out behind me like a mermaid’s. I would stand in my closet getting dressed, and I would pile my wet hair on top of my head in a bun, and I would pour two glasses of wine.

I miss my life. You know what I’m talking about, ____. There’s plenty to be happy about still. We do make the best of things. But right now I’m tired of compromising. And you’ve been doing this for so long. How? How do you keep your frustration from spilling out, forcing the ones you love most to back away so they don’t drown in it?

I still have my little person. Read More>

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

Speed4Kevin

In 2013, I was connected to Kevin Swan, a young filmmaker from Florida, who also has ALS. Kevin and I made a phone date, and quickly found that we had similar attitudes to living with the disease, mainly that we were looking to stay positive and to focus on what was good in our lives.

Part of our conversation centered around the idea that we really feel lucky to have been given the new perspective that we have, with enough time to actually put it to use. We meant this in comparison to having your life snuffed out in an instant, never having the chance to tell people you loved them that one last time. Sure, we all know that life is fleeting and that we’ll someday die, but until you’re facing it in a more immediate way, it’s hard to wrap your head around the concept. I’ll never have everything about this life figured out, but having ALS has helped me to pare away some of the extraneous bullshit and think about the best ways to spend my time.

Kevin decided that his time would be well spent by starting A Life Story Foundation, whose mission is to Rewrite the End of ALS by raising money for research and awareness building. He uses his background in film to tell the stories of other people with the disease. “ALS does not define who you are,” his website says. “It’s just a part of your story.”

Having known Kevin for a couple of years, one thing I’ve noticed is that he always looks dapper. Nice jackets and ties, big smile. That kind of effort is not easy, but it’s really important. It’s just one more way that we continue to care about ourselves, when we can’t always care for ourselves. Even in a t-shirt and jeans, Kevin Swan is nicely put together. So you can tell that being here still matters to him.

Although my once-muscled limbs are melting like ice cream, I can appreciate that desire to look your best. I mean, I wear Uggs every day, like someone’s toddler going to music class, but I brush my hair. I put on one of my maxi dresses, and I try to feel grateful for another day. I try to hold on to that feeling that Kevin and I still share, that we’re lucky to be here. That we still have work to do.

Read Kevin Swan’s story here.

Watch Kevin Swan’s story here.

|Categories: Faces | Tags: , , , | Permalink

Extra Yarn

“Soon, people thought, soon Annabelle will run out of yarn.

But it turned out she didn’t.”

-Extra Yarn, by Mac Barnett and Jon Klassen

Scarlett has a fabulous book called Extra Yarn. It was a gift for her third birthday, and we still read it often. It’s about a little girl who finds a box of yarn, and no matter how much she knits, there is always yarn.

Now, I’m not going to get all “life is like a box of yarn” in my best Forrest Gump voice, but I do love this book. The little girl makes a colorful sweater for herself, and one for her dog, and when a neighborhood boy is mean, she tells him he’s just jealous. I’m not, he replies. But, as the author tells us, it turns out he was.

The little girl is told that her sweater is a distraction, and when she offers to make one for everyone, she’s told that it’s impossible. That she can’t. But, the book goes on to say, it turns out she can.

And in the end (do I have to write spoiler alert here? The book is like 22 pages long, so I think you’re ok to hear this) when a terrible archduke curses the little girl, yelling that she will never be happy again, it turns out she is.

I kept thinking about that book during ALS Awareness Month. Read More>

|Categories: Life, Parenting, Progression | Tags: , , , , , , | Permalink