I love Abi and I so badly want to be here for her. I miss her and her spirit. It feels like she might be losing hope and my heart is breaking. I wasn't aware of the fact that her disease is progressing this fast. What does that mean for her prognosis? I can't begin to imagine how you are coping. You ok?
I wish I was there to spend time with her in person. I thought about jumping on a plane and heading your way but realize that she likely wants to be surrounded by family right now. So I would really like to send her something instead to enjoy and I'm hoping you can help me determine what is appropriate. I am thinking a box of goodies like bath bombs, slippers, a blanket, a book etc or maybe send someone to the house to give her a massage or manicure and pedicure.
Please let me know your thoughts.
First, thanks for asking about us.
It does feel like it’s getting harder for Abi to be less than she was, and to have no obvious way to reclaim the lost ground. Losing her endurance and strength clearly affect her. And not having a voice seems to hurt the worst. We don’t talk about complete recovery/healing as much as we used to. Our discussions tend to be more direct when it comes to where this disease is likely to lead. We don’t shy away from discussions about how this may be the last…Her last birthday. Her last Christmas.
But I don’t sense that Abi’s any less determined to remain true to herself. She recognizes her limitations. Hates them. But within those limitations, she continues to Love, Dare, Live and Make. That doesn’t look like it used to look. But she’s still Abi. For sure.
Like Tuesday, when she insisted on going to the grocery after treatment to stock up on exotic mushrooms and blue cheese and brie and apples and all the stuff she’d need to put together a spread of crustinis for Milly and Filly and Billy, who are visiting this weekend. Like putting together a batch of caramel corn (after dessert) so we’d have something to nosh during Saturday’s late football games. Like insisting on walking up and down the steps by herself or doing leg lifts whenever she’s on the couch - whether she’s watching television or engaging in a conversation as best she can.
In some ways, talking openly about the trajectory of the disease and working within her limitations - instead of fighting them - might look like losing hope.
But it might be something completely different. It might just be seeing the world as it is, and having the courage to live squarely in that world, instead of spending our precious moments building castles in the air.
Maybe it's okay to stop pretending. Pretending the sky is blue in the middle of a thunderstorm. Pretending that leaves never fall from the trees. Pretending our children never grow old. Pretending we’ll never leave those we love behind, nor they us.
Because unless we stop pretending, how will we ever see lightning tumbling from a cloud? Or the fire from the oaks and maples in a misty valley in October? How will we even sense that divine instant when our children break free of the boundaries that we - guided by pure love and our own fears - have set for them? How can we bathe in those moments that we've been given with those we love, instead of letting those moments fall away like water off the roof. Or worse, pretending the moments into something they’re not?
Seeing Abi struggle to get up the stairs is tough. And of course it’s a reminder of how much has been lost. But it’s also a clear indication of the depths of Abi’s fight and determination. And you have to acknowledge what’s been lost to fully appreciate how strong and courageous this lovely woman is.
And she is strong. And courageous. And lovely.
J.D., It’s been almost two weeks since you asked me what you could do for Abi. I’m sorry I’ve left you hanging. But honestly, we get asked that often, and it’s never been an easy question to answer. I usually tell people thoughts and prayers, and as much as they are appreciated, I understand that doesn’t feel like enough to some. (It is enough.)
Also, every single thing you mention in your note would be awesome. They’re all thoughtful and just right for our girl. Bath bombs, slippers, a blanket, a book, a massage. All spectacular. Seriously.
But I’ve given this a lot of thought since you asked, and I want to offer an alternative that may resonate with you. I hope it does.
If you want to do something for Abi, something worthy of her strength and courage and grace, then:
Be bold about it.
And do it Right. Now.
What do I mean by that? Only you know what living well means to you. But I offer these things to get the juices flowing.
Send a letter to that person who touched you in the best possible way. The person who stretched you without breaking you. Who said a kind word when you needed a kind word. Who shared a little piece of themselves that you found so lovely that you embraced it and made it a cherished piece of you. A piece that you share with those you trust the most. You know who this person is. Send them a thank you letter, or a love letter (maybe they’re the same thing, after all). Tell them about the difference they made. Tell them today. It will be the best thing that happens to them today. It will be the best thing that happens to you today. I promise.
Spend today searching for some little joy that’s eluded you your entire life. It’s there. I know it’s there. You know it’s there. And you already know where to look for it, don’t you? You’ve kinda known all along.
Laugh at a joke nobody else thinks is funny. Laugh until you can't see through your tears. Maybe even laugh at your own joke. (This is so. very. Abi.)
Walk outside, close your eyes, and in the din of the traffic and the wind and the airplanes and the dogs, find the song of a bird that you didn't even know existed.
Give a few dollars to the guy who camps out under the overpass. You know, the guy with the sign you don’t completely trust. The guy who probably isn’t a veteran, isn’t homeless, and won’t really use the money for food or for bus fare. Give him a little cash anyway, because you actually would if no one were looking. Wouldn’t you?
Skip work and take a long walk in the woods. Or the city. Find a color you’ve never seen before. Give it a name. Call it Abi, maybe.
Let go of that angry you’ve been holding onto against someone who loves you - someone you may have once loved. (You know who that is.) Tell that person you’re sorry - No strings. No caveats. Hope to God they forgive you, but even if they don’t, forgive yourself.
Lie under the stars. Breathe in your smallness. Let your smallness take your breath away. Weep. (Repeat.)
Paint a picture. Write a poem.
Go to a pet store and spend way too long sitting with the ugliest puppy you can find. You know. The one that looks like Dobby and never gets out taken out of the window because he shares a kennel with a pup that reminds everyone of being six years old.
Buy a dozen maple-bacon donuts. Eat two, and give the rest away. Remember that guy with the sign you might not believe?
Go to the dollar store and buy a bunch of those solar-powered hula girls and flamingos and monkeys or whatever they happen to have at your dollar store and put them in a window sill and smile every time you see them.
Feed the hummingbirds.
Say to someone who doesn't already know, "I you love you to the moon!" Then hold them in your arms until you feel the release. Then hold them some more.
Take a moment today to see the world as it actually is, and marvel in the beauty that’s been there all along, just waiting to be appreciated. Just one moment.
And here’s the most important part. Tell Abi about it. Tell her how she gave you the courage to have an actual, tangible - maybe even life-changing - moment.
Better yet, tell everyone about it. Share it here. Because just like you, people have been wanting permission to have this moment for a long time. Give them permission. You actually have the power to give them permission. Imagine that. It’s literally breathtaking, isn’t it?
From the very beginning, Abi has longed for confidence that her disease might do some good in the world. Some good for the people she loves. Isn’t that why she started Outwrite? Created this site?
Live well. Tell her about it. And you can help to instill that confidence that she so deeply desires.
And that's the best gift you can give Abi.
Way more than you asked for, J.D.. I know that.
But I realize now that with your questions, you planted the seeds of Sunday's Two Flounders post. So many people have been asking this same question.
And because of you, I finally know how to answer it.
Thanks for that. You’re the best.
Post Script: Or maybe just send cash. Cash is good, too.
Post Post Script: Just kidding about the cash.