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What I want
August 9th, 2015
This is my third day on Nuprogen, and I’m feeling fine. I tire easily. I’m taking regular Tylenol, and that’s all. We even went to the aquarium this morning, which made me wish I’d brought my kids.
I want to wrap my arms around my kids. I miss them. I want to crush Maddy and Zach with my whole body until they are exhausted from giggling and lack of air. We FaceTime every night, but I can see in their eyes that they need to be crushed. I know they’re fine with their Pop-pop. But I need to press my cheek against their cheek, press my eyeball up to their eyeball, and blink into their eyelashes.
What else do I want? I want HSCT to work. I’d be grateful to stop the progression, and over the moon if some of it reversed. Also, as long as I’m putting things out there, I want to be a best-selling middle grade novelist. A Newberry would be fantastic. I have written a book, but just before I came here, I tore it down to the studs and used it to roughly outline a five-book series. I’m tinkering with it now.
In the spring, all I wanted was for insurance to come through and pay for HSCT. It was an ever-present thought, like a cloud that followed me around. I was told that this could be a big hurdle, and until insurance said yes, we were dead in the water. It’s hard to want something that’s out of my control. To just wait. My friend, Joey, who is powerful in a lot of ways, called everyone that she could think of to say, Hey, when this comes across your desk, say yes. No control. No power. My destiny was in someone else’s hands.
In June, I still didn’t have an answer when I went climbing in Wyoming. I was stalking my email though. Gina (one of the Pixie Titans) and Krista (who was with me on Dark Shadows and is usually with me in general) wanted to take a break from climbing to go to Yellowstone for a couple of days.
They invited me, and at first I didn’t want to go. I thought it would be a shit-show. Honestly. I’d heard all about the tourists and the traffic jams and couldn’t think of anything besides Yogi Bear to associate with it. However, I like Gina and Krista, and I needed a rest day from climbing. So, shit-show, here I come.
Here’s a picture of us.
Did you know there is a 308-foot waterfall that dumps into the Grand Canyon of Yellowstone? That much water pounds in your heart. I do not have enough poetry in my soul to properly describe it. My friend Al might, because he’s a genius at poetry, but he is more prone to writing about ordinary sorrows.
A picture will never capture it, but here is a picture.
Okay. This is not even a A Reasonable Facsimile of a waterfall. There is no point in me posting a picture. You will just have to go see it for yourself. (Truly, none of my pictures come close. I’m not being mean.)
After seeing the waterfall, I check to see if I have service. Nope.
We’re driving down to the lodge when I get a few bars. I check email, and I have this from one of the transplant nurses:
“Hi Karen,
We received verbal approval.
Do you know when you would want to come and start?”
I don’t even know what to feel. This is what I’ve wanted. I should be overjoyed, but I’m not. I feel like it’s Christmas, and I wanted Cookie Monster, but instead I got Grover.
I am the luckiest person on the planet, and yet I feel sorry for myself.
I keep this information to myself for a few minutes in the backseat of the car as we pass some trumpeter swans. I have a jumble of emotions, but one stands out. I think I’m afraid.
This “yes” from insurance makes it all real. It makes it true: I am broken.
There are some people I’ve known for years and years, and they have no idea I even have MS (well, they know now). I’ve kept the truth of it far away from me, and denial is a powerful thing. Reality is crashing in.
I’ve only been pretending to be strong.
But this is what I want. This is worth a shot. Yes, I miss the kids, and, yes, the novel is briefly sidelined, and yes, I’ll make myself vulnerable. But I have the reins. I got this.
I share the news with Krista and Gina, and they are appropriately overjoyed. Their happiness is contagious, and the wad of anxiety in my stomach unravels. I’m on it. I respond to the email to set dates. I let joy creep in.
This is what I want, and I’m so lucky.
test Filed under Stem cell transplant for MS | Tags: devics, Dr. Burt, HSCT, insurance approval, MS, stem cell transplant | Comments (11)
11 Responses to “What I want”
My soul swells to reach yours and intertwine our frothy fingers. There is deep strength in gratitude…it oozes from your pores. And it is okay to feel weak and strong and scared and bold. You are everything in one mighty package.*
I was overjoyed when I heard that you got a yes from insurance. I feel so positive about this whole journey. “It’s worth a shot,” you say. I look at it more like a bomb! A great, hard, wonderful bomb with all good things inside.
You have this, no doubt about it. And as for your dreams, may they all come true. I can’t wait to sit in the audience when you give that Newberry acceptance speech! I’m positive that will happen. Keep picturing it all–those visualization a make it real.
One word about your blog today, my fearless friend: Yosemite! Ok, more words: you’re nailing it! Love you & miss you. Stay strong. We’re all fighting beside you! -G
I love you Karen! I so get it. Thank you for being You! Yes! You got this! I see you whole and healing. Love, Laura
PS: I totally get the feeling. I’ve felt it too, and that is why your blog is so powerful…but you (and we) are never ever broken.
“I’ve just been pretending to be strong”. This. I’ve spent a lot of time pretending to be strong, because I had no other choice. So many times I wished I could just be weak, to just cry with it all. Even 7 years later, almost everyday, if even for only a moment, I wish I could be “weak”. But it’s not being weak, I see that watching you, Karen, and it’s breath taking. I don’t know why I see so much of my journey in yours, but I wish I could accomplish it with the grace that you have.
One of the things that makes you a great writer is your honesty, which is a form of bravery. Rock on.
This is such a great post, Karen. I think allowing oneself to be vulnerable – and publicly – is a true sign of real strength. I’ve been thinking that all along as I read your blog. There is not enough vulnerability – humanity – in our world. I am so grateful for your friendship and so proud of you. And, as always, I love your writing and a chance to see the world through your beautiful blue eyes.
I won’t quote the Rolling Stones, here. I hope you get all of what you want.
I’m loving these posts, kron. It’s true…you got this!
Those kiddos will be in your arms in just a few days – I know you must miss the hell out of them.