Are There Adult Merit Badges for This Sort of Thing?

If you're just joining the party, I'd recommend reading my first post as a primer, which includes a few disclaimers and housekeeping items of note.

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My new uniform

Well, here we are on February 29 - Rare Disease Day. 

The day lands a little bit differently when you realize you're now among the less than 5,000 people in the US with a rare type of brain cancer.

Do they give out adult merit badges for this sort of thing? Because I feel like I need a Girl Scout badge or some flare or something to mark this achievement. At the very least, I'll be sporting this shirt more often. I bought it well over a decade ago somewhat on a whim, but have rarely worn it, it's so obnoxiously bright and makes me feel too conspicuous in public. 

But it now seems like a good time in life to start shamelessly wearing it. 

I texted my cousin earlier today who also has a rare disease of his own, one he's had since he was a child, "Happy Rare Disease Day?" 

He responded back, "Welcome to the club. 😂"

(He also added, "A club I don't want to be in." So, yes, even in humor, let's also acknowledge the flip side of that coin. We're both in clubs we'd prefer not to be in. But here we are.)

I then thought later, "Shoot, two people in the same family with two different rare diseases? That feels like it warrants some sort of momentous bucket list-worthy kind of trip."

Oh, wait.

That's right. 

We did do a bucket list-worthy trip last December. 

We just had no clue how timely that trip would be.

Shortly after I was admitted to the hospital earlier this month, I texted my aunt, my cousin, and my friend, Kristen, my three travel companions on our trip to Alaska, and said, "I keep thinking of Alaska. That trip was ordained. I'm convinced. God knew what was about to show up on my doorstep." 

That trip was yet another thing I look back on in recent months and get overwhelmed at the graciousness and kindness of God. It really was the trip of a lifetime. I wrote about it earlier, but also wanted to share the video I put together of the trip. There are a lot of significant moments that will stand out from that week in the interior of Alaska, but what keeps rising to the surface is the memory of how much we laughed. I hadn't laughed that hard and that long in awhile. And then we would do it all over again as we retold and relived moments. The laughter, that "carbonated holiness," as Anne Lamott called it, bubbled up in our chests on a regular basis that week. Those are the memories that will linger with me, the moments I will recall in the months ahead.

(And if you're a fan of the Iditarod, be sure to root for Josi Thyr! She was one of our mushers on our dogsled tour and she's running in this year's race, starting this Saturday!)

Coincidentally, when I put this video together back in late December, I debated on what song to pick. And now in hindsight, I couldn't have picked a better one. 

Thanks, Ben Rector, for supplying the soundtrack of my life. 

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Functional updates:

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

I have a functional MRI scheduled for next week, which is going to help us better assess how much the steroids have helped reduce the swelling around the tumor itself, as well as inform some decisions for possible surgery. I'm still in a place where I'm trying to get clear recommendations from both the lead team of doctors and then the team I sought out for a second opinion, and then ultimately compare the recommendations. 

I saw my primary care provider about my knee. No major concerns there, but it's still a bit puffy, so I've been icing that on occasion and trying to rest it when I can. I'd ideally like to get back into a rhythm of doing some very light workouts, but I'm very aware of the limitations of my body at the moment and know it will take some time for things to get back to (mostly) working order.

Sleep is significantly better and Flash's middle of the night office hours seem to be a thing of the past. But I have decided that Garfield the cat is my alter ego. You gotta watch out for those nap attacks. 

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PS: Want to leave a comment? If you select "Anonymous," would you mind including your name directly in the body of your comment? That way I know who you are!

Thin Places

I wonder if perhaps when we find ourselves stretched thin that we most need to be stretching to find the "thin places" in this world, the places where heaven and earth seemingly meet, separated only by the width of a whisper, as if a supernatural curtain has been pulled back and we can at last see all the inner workings of heaven of which we only dare to dream.

I found such a thin place recently. It's on a mountainside north of Fairbanks, Alaska, wrapped in boreal forest, blanketed in snow, and cold enough to leave frost on your eyelashes and make you question your life choices. It's like Narnia, minus a lamppost, a white witch, talking creatures, and a lion who is good but most certainly not safe. Like sentinels of the wood, spruce trees wore uniforms of snow, boughs bending low under the weight. Snow would fall off a branch, causing it to spring back up like a firm salute to the skies above.

And then the lights - those oh-so-awe-inspiring northern lights. My friend said it was like watching someone play the piano, the keys moving up and down gracefully, playing a tune only angels can comprehend.

Yes, there it was. The width of a whisper on a mountainside in Alaska, my own thin place.

I had wanted to see the northern lights for as long as I can remember, and with a milestone birthday coming around the bend, I began exploring the who's, how's, and what's of seeing them. I marked my 30th birthday by riding horses on the beach in New Zealand and wandering around Hobbiton, both items on the bucket list, so why not cross another item off for my 40th? Plotting and planning began nearly a year ago and finally a few weeks ago I found myself heading to the heart of Alaska, along with my aunt, cousin, and friend.

I'm not entirely sure what it is about spaces like Wyoming and Alaska that seem to be my undoing. Or maybe in some small way my remaking. There is this inexplicable pull to places of wildness and vastness, jagged mountains and sweeping views, silence and solitude, and nary a cell tower in sight. A kind of homesickness for a place that has never been home. But maybe it's just all a romanticized notion in my head, a way of seeing these places through rose-colored glasses, building them up to be far more than they really are.

But is it possible to make too much of misty greens and reds, suspended high in the sky, undulating in a cosmic display of wonder, with the Big Dipper as their silent starry companion? Is it possible to make too much of the sheer delight of standing on the foot boards of a dog sled as a team of huskies works in tandem to pull you across the snowy terrain? Is it possible to make too much of cold air that snaps you into awareness and penetrates to your very bones? Is it possible to make too much of an aerial view of wilderness that nearly takes your breath away and brings the slightest hint of tears to your eyes? 

No, I don't think it's possible to make too much of such things, to make too much of the thin places in this world. 

Even if those thin places are a bit brisk at times.

But pile on enough layers and you start not to notice the cold. At least until you pull a glove off to adjust a boot strap or a zipper, and then you wonder if you've just been speared with a thousand icicles, the cold almost creating a burning sensation. 

Our adventures started in Anchorage, but we didn't linger long before we found ourselves on a 12-hour train ride north to our final destination in Fairbanks, the 'Golden Heart of Alaska.' From there, we ventured another hour north to Borealis Basecamp. And then we had the time of our lives snowmobiling (minus that moment when we tipped the whole thing over sideways), dogsledding, hanging out with reindeer, nearly hanging out the back of a snowcat, sleeping in igloos, reveling in the beauty of the northern lights, taking a breathtaking helicopter tour through the White Mountains, enjoying good food (more salmon chowder, please!), and laughing so hard I cried on more than one occasion. 

I never said the thin places couldn't also be found in the ache of cheeks hurting from laughing so much or a good amaretto sour in the company of fellow storytellers.

It seems since returning home, Alaska is all I can think about - when to go back, how to get there, where to go, what to see. I want more of the thin places in this world. 

Even if they do come with subzero temperatures and the need for six layers of clothing.