Falling

I fell down the stairs last night.

I made it through the entire day without falling. There were a couple of moments when I was sure I was about to go down. A moment in the kitchen when I toppled unexpectedly to the left, and just managed to grab the counter. That misjudged moment in the living room when I almost missed my chair.

My body is not cooperating.

I'm used to it. It's part of living with this disease. Heck, it's part of living. We all fall. I like to think that due to the fact that I'm a "fall risk" as they label me at the hospital, I've become pretty good at it. We all have our talents.

A few days ago, after one of my infusions, Dr. Drama and I stopped on the way home for a slow ramble in the woods. It was a gentle climb uphill. No worries. I took it slow, the dog galloping up and back, happy to be out finally. Dr. D trailed along behind me, happy to be out as well. It was lovely. It was peaceful. It was perfect.

We walked until my post-infusion adrenaline burst petered out, standing for a minute to enjoy the quiet before turning back. On the way down, I started thinking about a project. I started talking, building my project in words and gestures as I went. My eyes were focused on the image in my mind, not on the trail.

I tripped.

My foot caught a root or branch or rock. My feet, scrambling to find better footing, missed a step. My arms flailed, throwing my balance off further. My center of balance shifted forward, down the hill. I went down on my knees. My pinwheeling arms came down, catching me, my hands clutching at dirt and debris.

It was over so fast.

To me, it was shocking.

To my spouse, ahead of me on the trail, it was hilarious.

"You just fell down the hill! In slow motion! That was the funniest thing I've ever seen! You called out, and when I turned around, you were sort of slo-mo-ing down to the ground!"

I had no idea what he was talking about. To me, it'd all happened instantly. Terrifyingly. Painfully.

I've been thinking about that fall ever since. What was it that made it so different for me than for the person standing right next to me?

It was surprising.
It hurt.
It was embarrassing.
It was unexpected.
It took my breath away.
It was inevitable.

But it wasn't scary. Not really. I knew I was going to stop. Even in my initial panic, I understood that it wasn't a life altering fall. My mind, so flighty and distractable under the best circumstances, honed in on the necessities: getting me through safely. When I accept that I am falling, or even that I am going to fall, I can trust that I will make it through safely.

That's the takeaway here.

I will fall. Maybe it's because I have holes in my brain that make me pitch over for no apparent reason, or it may be because I'm distracted, or it maybe it's for another reason entirely. But when I let go of fear, I'll end up okay.

Cake is cruel

So I'm updating the blog, and in the process have found a pile of old entries I never published. Jackpot! I'm reading over them, and will be posting them from time to time. Some of them need permission from the victims participants before they're published because I am a responsible parent. They're a mix of health, parenting, silliness, and life, and we hope you enjoy reading them as much as we do.

This is one I wrote in 2014, during the summer break. 

My kids found a cake pop on top of the fridge today. Dr. D brought it home for me yesterday as a treat for surviving another day at home with the kids, and I forgot about it. And while yesterday may have been a cake pop day, today has been more of a multi-tier, butter cream cake with a four shot espresso chaser day.

Another shriek, this time followed by, "Oooo! A Caaaaaake Pooooooop!", followed by what sounds suspiciously like an elephant falling off the counter. They frequently go scavenging for hidden treasures when I'm out of the way, but haven't yet mastered the art of subtlety. This is handy in that it allows me to catch them quickly most of the time.

I made it back upstairs in time to see the three of them gathered in the kitchen.

"Ooo! My cake pop! Thanks. I'd forgotten about that."

And I ate it. I stood there in front of those gape-mouthed faces that look so much like mine, and I savored the crap outta that sugary sweet, pink and white bit 'o heaven.

I'm trying to teach you a lesson, my loves: Life is cruel.

I figure it's better for you to learn these things from me. That way, it won't be such a surprise when you leave the warm, nurturing confines of this cake pop-less nest I've built for you. Because someday, someone will show you that life is cruel, and they won't stick around after to teach you how to handle that.

Life is cruel, kids. But sometimes, if you're nice to people, they'll share their cake pop with you.

Remember that for next time.

Bridges

Day two of my bionic conversion therapy
is complete, and look how well it's going!
 

I recently told two of my neurologists that I didn't want to do spinal fusion surgery unless they could also include the bionic implants. One of them laughed his head off, and said he'd sign up for that, too. The second one was horribly confused, and stammered through an attempt at explaining how that technology wasn't available yet. Poor guy. He apparently didn't catch the twinkle in my eye.

Dealing with any illness is difficult, and dealing with a chronic, progressive disease requires large amounts of humor, patience, resilience, and a healthy dose of grit. It's often the littlest things that make a difference. A friendly chat. A shared joke. A walk with the dog. A new pen. An opportunity taken.

Chronic diseases take away opportunities. It gets a little disheartening at times. Sometimes, it gets downright climb under a rock, wish the world away, hold your breath depressing. All those things I never got around to trying when I could, and now I can't. It's enough to slow the hardest pounding heart.

So I've learned that while I can so quickly fall into that pit of regret and remorse, I can also build a little ladder across it. Sometimes, it's a tiny, tenuous ladder. Barely more than a wobbly branch to creep across, hands and legs clenching, teeth grit. Those little paths over my pit are things like my comfy bed, my snoring dog, a pretty view out the window. I'm stuck here today, but at least I have comfort and beauty around me. That knowledge holds me for the moment.

Sometimes it's a wide bridge, and I can stroll right across, barely even noticing I've done so. Spending a lovely afternoon with a dearest friend who came to keep me company during my infusion, followed by a delicious lunch builds a beautiful, sturdy bridge.

Browsing in a store with all my bandages, the plastic tubing hanging off my arms, and the bruises and bizarre colors of my skin from all the poking (and spray painting without gloves...) can be highly entertaining, and a bridge building experience. Seeing the nervous looks in my direction gives me the opportunity to practice my stand-up skills. How could I not? Launching into a friendly, "Oh, don't worry! I'm not contiguous. This is an experimental, bionic conversion therapy I volunteered for. Did you ever see that show about the Bionic Woman or the Six Million Dollar Man? Kinda like that..." I skip right over that brightly painted bridge.

Last week, my bridge was these pens. I go through them like mad, doodling away in my sketchbooks when I am able to sit up and do so. Sometimes even that's too much, though. So sometimes my bridge is simply laying in my cozy bed and daydreaming about what I'll sketch next with those well loved pens and markers.

I love just about any pen, but these Pigma Microns have a special place in my heart. They're the only thing in my studio that none of my family are allowed to borrow. I never seem to have enough of them since I go through them so fast, but drawing with them always manages to get me across that pit, and I love them for it.

Today, I have a bridge waiting for me already. Another sweet friend is coming to keep me company during today's infusion. It's Friday, and that means family movie night. My bridge got an early start today when my husband woke me to come see the sunrise off our deck.

Illness takes away opportunities, and that sucks. Illness also clarifies things if we let it - opportunities I never saw, people I didn't take time for, sights I was too busy to admire, bridges I never even noticed being built.

Illness itself is no blessing, but the life I choose to live is blessed.

How I Am

When you collect doctors and diseases like other people collect stamps and autographs, simple questions can feel daunting. Even a simple How are you? becomes a struggle to answer. In my mind, I'm constantly debating what and how much to say.

It's not that I don't want to be honest, or that I don't care enough about you to open up. It's just that sometimes a simple question has no simple answers. I spend all day, and many nights, dwelling on all the ways I'm not fine, and I don't want you to feel worn down like I do. I don't want to be that friend; you know, the one who gets you in the corner at a party and tells you all about her incontinence problems, the sinus infection miraculously healed by multiple Neti Pot applications,  and those plantar warts that will just not die! Not that I won't talk to you about that stuff. I absolutely will, but I'll do it in a way that feels more like a punch line than a punch in the gut. 

The problem though, is that I want to tell you how I am. I want to share that I'm in pain, and that I feel angry/achy/tired/hot/cold/hopeless/helpless/guilty/ashamed/depressed/worn down/etc. Talking about the stuff that runs constantly in the background of my mind is exhausting, though. And, if I'm not careful, talking can turn into its own chronic disease.

Sharing the honest truth can be helpful, though. It can bring its own sort of healing. It can make those of us with chronic illnesses feel a little less alone when you reach out and ask those simple questions. When you lean in, look us in the eye, and ask us how we're doing, that pain or dread or sadness or whatever fades into the background a bit. We feel connected, and just like air and light and love, we need that connection in order to survive.

It's a fine line to balance. 

So when you ask me how I am, I'll tell you about that time I accidentally licked pee off my thumb, or about how my kid greeted me from my latest ER visit with a "hey! Glad you aren't dead or bedridden!", or about how one time, the drugs I was taking made me hallucinate an entire Kindergarten class on the ceiling.

And sometimes, if you ask how I am, I'll tell you.

So thank you for asking. It means a lot.