This Disease from Up Top

One of my favorite things to do is park on top of parking decks. Or parking garages. Whatever your preferred nomenclature.

I’ve written about this before, and it’s something I never tire of, something that comes quite naturally to me whenever I enter such a structure. Because, like, life is too short to park on the bottom level. Just because it’s most convenient? How boring.

Worse yet is zigging and zagging a few levels up for the first available spot, only for you later to forget if it was level 3 or 4, or 6 or 8, lost in the middle. How maddening.

Just go all the way to the top, friend. Zig and zag and zoom right up there, and enjoy the view. Whether mountains or skyscrapers or piles of rotting garbage surround you.

If nothing else, absorb this new perspective. You never know what such a new insight might trigger in the moment or even throughout your day.

Today I topped a deck I’ve never ascended before, and I saw buildings I never saw before. At least from that vantage. It took a while to figure out, leaning against the railing and connecting streets and dots below to make sense of this new grid, this puzzle before me.

Oh, the puzzles before me these days . . .

I’ve been going to the hospital once a week for the last month, settling in for these hours-long infusions in an attempt to treat my autoimmune disease, to bring it into remission. Tomorrow is my last infusion of this cycle, and in a best case scenario my last one ever.

I have no idea how my bloodwork looks after three infusions. I’m hopeful everything’s flowing in a positive direction. Hopeful that my next rheumatologist appointment will illuminate the next phase of my healing journey.

Because that’s the thing: I don’t know where I even am in this journey. After all these infusions, am I halfway there? 10%? 1%??

It’s unnerving not knowing where you are. Like I’m on the bottom level of a parking deck (garage) with no idea how long or far or deep or wide or harrowing this thing goes.

Was this last month of infusions a definitive leap toward healing or a total wash? Do I move on to the next phase, or do I start over with something else?

With autoimmune diseases and life, I long for the top-level view. I want to know where all this goes. I want to see the depths from where I came and where I’m going next. I want it for me, I want it for my family, and I want it for my friends and everyone around me.

How much longer must I send out medical updates via social media, newsletters, blogs, etc.?

How much longer must I avoid traveling and groups of people?

How much longer must I have friends get me groceries?

How much longer will my nose and knees feel weird?

How much longer will fitness daunt me?

How much longer must I guzzle pills?

How much longer, Lord?

How much longer?

It’s not that I’m suffering right now. Not plagued with doubt or any sense of overwhelmed with this disease. God’s been good to me.

I’m just curious, over-eager, perhaps, more than anything. I like to know things. Like to plan. Like to connect the current dot to the next one.

I like it, I prefer it.

It’s hard to live in this limbo of not knowing when will be the best, most logical time to board a plane again. Or when to hit the road for a week or two. Or whether I can pay my bills come December.

But isn’t this much, most of life? Lived from the vantage of the bottom of a parking deck (garage)?

Alas. We rarely have the sky view.

This is upsetting, because the sky view is awesome. Like I already said, y’all should always go for the sky view.

But I suppose — I suppose — there is a necessary-ness, even a beauty, in the lower levels, too. Of the zigging and zagging. Of not knowing what’s coming, what’s bending, and what’s extending to new horizons.

Living presently is indeed a beautiful thing. As great as the view is from the top, I don’t ever want to skip the journey of all those lower levels getting there.

But, you know, I don’t want to camp out there, either. It’s boring and kinda maddening down there.