A Book and its Cover

A Book and its Cover

[6 minute read]

I thought a lot about what to put on the cover of this book. I didn’t want something bland. That doesn’t fit the message or tone. I didn’t want a big picture of myself. That seemed silly and self-important. I don’t have that kind of name (or face) recognition. Besides, this isn’t about me, it’s about the things we share in our experience of chronic illness. I could have chosen a medical image, but that would emphasize “sickness” — and my book is about how to choose life, even in the face of an awful diagnosis.

It had to be something personal, because I don’t just study chronic illness, I live it: both with a diagnosis and as a longtime caregiver.

And that led me to jumping out of perfectly good airplanes.

It’s overwhelming and terrifying when you get a diagnosis you’ll have to navigate for the rest of your life.

The moment I was diagnosed with multiple sclerosis is burned into my memory. I remember the wash of barely controlled emotions across my neurologist’s face as he broke the news. I remember every sight and sound of that experience. I remember the confusing swirl of tumbling thoughts and emotions as I struggled to parse this news (especially because MS had already been ruled out for my case). I even remember the sharp, antiseptic smell of the office. Trauma does that.

I remember that I felt like I was falling. My foundation crumbled. My life was instantly uncertain as it had never been. I felt small and out of control. I didn’t have much experience feeling that way. I wasn’t prepared.

Skydiving was an apt metaphor for that moment, and many other moments since, when I’ve been certain MS would win.

There’s an instant when you stand in the open doorway of a plane where, no matter how many times you’ve done it, your body wants to rebel. One step is, after all, unnatural when you’re three miles above the world. It can be challenging to will yourself into that step.

That’s where the skydiving metaphor is again apt: gravity is bigger than you. The wind is bigger than you. If you struggle and fight against gravity and wind, you will fail. If you’re stiff and unbalanced, you will spin out of control.

At the very moment all your body’s threat responses are screaming at 11, you must relax into it. You must become aware and focused. Your life depends on it. You have to understand that your small motions can be used with these forces to influence the outcome.

Influence. Not control…never control.

You must shift your mindset to work with these forces to accomplish your goal of a safe landing. It’s about acceptance and empowerment, never resignation.

In the image, I’m small and alone, framed against a big, wide world. I like that. It’s how we feel much of the time. Chronic illness gets isolating. We spend a lot of time as distant observers of the life others get to lead.

In the image, I’m alone, but I’m also surrounded by expansive possibility. I could literally go in any direction. Even though I’m “sick,” I can still exercise my choice. I just have to learn how to work with those overwhelming, scary forces.

I like that I’m unrecognizable, unless you look very closely. We spend a lot of our time being misunderstood. Others don’t see us clearly behind the label.

We also spend a lot of our time hiding the full extent of what we’re facing. Why? Because we don’t want to be seen as weak, whiney, or depressing. Because we’re tired of explaining and not being understood or believed. Because we really don’t want to talk about it, either.

That cover is doing a lot of metaphorical heavy lifting about the experience of negotiating life with a chronic diagnosis. Skydiving is a great metaphor for the mindset shift that research demonstrates actually works. But that image is more personally relevant, too.

After you live with a chronic health condition for a while, you can come to see it as a long, depressing process of saying goodbye to the things you love about life. One by one, for practical reasons that seem harmless in each moment, you start saying “no” to life’s experiences.

You do this because they’re just too damn much work. They’re exhausting. Painful. Awkward. You name it. And you get so used to saying “no” that you don’t get around to saying “yes” again…or life moved on without you and you just stopped getting asked.

Little by little, the things you love about your life are things that used to be in your life. All that emptiness gets filled up with pain, exhaustion, fear, disconnection, and a laundry list of things we don’t want to face and others don’t want to share.

You don’t recognize your life anymore. It’s certainly not something you want. But getting back to a good life seems so distant it’s impossible.

I didn’t notice this process for a good while after I was diagnosed, but my tween son did. His none too gentle reminder prodded me to think about what I’d given up because I had grown unsure of my body’s abilities.

The one thing that stood out immediately was jumping out of planes. I had done it and loved it, but it was one of those things that got lost in the press of life and illness.

We all have those loved experiences that we’ve said “goodbye” to. Things we think we’ll never see again. Those losses, small and large, pile up in our lives. The losses are suffocating.

Yet we can reclaim much that we’ve lost. Maybe not in exactly the same way, but in ways that increase and affirm us.

Ultimately, that’s what this cover represents: something I valued and gave up, but found a way to reclaim.

I had to do it differently. Most of the time, I can’t feel much of my legs below my knees. I had to learn how to land the chute without feeling my legs. That meant I had to learn to focus on the pressure of landing I did feel at my knees.

I practiced and I figured it out. Chronic illness demands that we adapt. It demands that we give up some of our illusory control. It demands that we savor each moment, because the next isn’t guaranteed.

Chronic illness places a big fork in the road of our lives: either we become more active, aware, and forgiving of ourselves and others, or we fall under the pull of its immense gravity. We sink into regret and recrimination.

When I skydive, I’m reminded of the life I’ve chosen. I am reminded that, no matter what we’ve had to say “goodbye” to because of our illnesses, there are new adventures to be found. New relationships. New challenges. New ways to express ourselves.

The cover reminds me that, even though a lifelong health challenge can be big and scary, there is still a world of possibilities and we get to choose.

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