The Autoject Accord

By John Hawbaker

I joined my wife outside, coffee in hand, on a lazy Sunday morning where we made small talk – isn’t the weather perfect? – for a few moments before I asked the urgent question, “How have you been feeling?”

Genia’s heartbreaking reply: “I feel amazing.”

It was likely the final confirmation of her recent diagnosis; the steroid infusion was working. It had beaten back the weakness and fatigue brought on by multiple sclerosis.

We'd visited her neurologist again just over two weeks prior. The reality set in for her when she noticed that for the first time after more than a year of consultations and tests, the doctor had actually written the diagnosis on her chart.

I knew about a half hour before that, as I watched her run through a battery of physical tests.

Tap. Kick. Tap. Kick. “Can you feel this?” “How about now?” “Hop on one leg.” I watched as her left leg buckled and she grasped for stability. She could barely stand, let alone hop. Each fragilebounce that followed cracked my heart open a little.

I had to look away. Our eyes couldn’t meet in that moment of revelation.

Genia is one tough lady. She was a black belt in high school. She nursed her father through a losing battle with cancer. And as her mysterious symptoms had developed over the past two years, she often chose to suffer silently so our daughters wouldn’t notice and I wouldn’t worry or grow weary of listening. In truth, I looked forward to her doctor’s appointments because I knew I’d hear the whole story of what she’d been enduring.

I was breaking, but I owed her whatever strength and calm I could muster as what had been so infuriatingly inconclusive, for so long, finally got a name. Officially.

As we left the office that afternoon, we cycled through relief and heavy sadness. Should we be glad to just have an answer even if we hated the answer itself?

Our conversation turned toward practical concerns that were easier to talk about, like needing a Plan B for homeschooling. Maybe not this year, or the next, but one day. The definite uncertainty became one of the hardest parts. She’s been diagnosed fairly young, and the rightcourse of treatments could mean a lot of good days for a long time. But there’s just no way to know. It could all change tomorrow.

At the same time, the hope of distance helps us cope. All these problems belong to far-off days, we can tell ourselves with a measure of confidence.

But that day Genia had an urgent question of her own, one rooted in our hazy horizon: “Does this mean we can’t foster or adopt?”

We’d been talking about it for years, and her asking buried me under my own selfishness. So what if I liked our small family the way it was or wanted to finish school first? I’d finally come around – pending that graduation, of course, because it’s the practical thing to do – but was I too late?

Genia’s question revealed her own character as well, in stark contrast to my own. Her amazing generosity of heart is what I love most about her. And now this disease wants to steal not just her physical abilities, but a calling?

Part of me wanted to shout, “Of course not! Let’s get started now!”

We both know it’s more complicated than that.

She spent the next three days getting steroids through an IV infusion and a week laid up tickingoff each of the possible negative side effects as they rolled in one by one. The so-called “steroid euphoria,” not so much. But insomnia, headaches and nausea? Check, check and check.

The worst of it went down while I was halfway across the country attending a conference, then visiting an old friend, drinking in the Colorado sun and my fill of microbrews. She and our daughters survived on the goodness of our friends and family. Genia held back, wanting to let me have my fun, and waited to share the hardness of those days until I returned. Right before she vowed never to take steroids again.

That was a well-timed surgical strike in an ongoing standoff. She inherited an aversion to pharmaceuticals, and a storehouse of stubbornness, from her dad. But she agreed, for our daughters’ sake and mine, to follow whatever ongoing regimen her neurologist prescribes. Steroids, apparently, are tactical solutions exempted from our peace accord.

~~~

Four months later, it seemed everything would become real in a new way. A home health nurse came to teach Genia how to give herself injections of a drug called Copaxone — three times a week, forever, or until it’s not enough. It’s designed to help prevent relapses, the nurse explained, and she’s seen people who’ve been on it for 15 years or more and are doing well.

Her visit was a family affair. My mother, also a nurse, joined us at the kitchen table. She asked a few questions, sometimes to satisfy her own curiosity and sometimes it seemed because she didn’t think we were asking enough. Our older daughter sat on the couch, nearby but facing away, playing Animal Jam on the laptop as a distraction. She wanted to be close, but couldn’t bear to be too close.

Our younger girl started out in her bedroom with the door closed, though it wasn’t long before she was timidly peeking around the corner with wet eyes. I called her over to sit in my lap, then whispered reassurances and kissed her face as the nurse walked us each through a practice round.

Putting together the Autoject, a mechanical tool that looks like a grill lighter and obscures the needle. Placing it firmly, but not too firmly, on a rubber ball. Clicking the red button to release the liquid and counting to 10.

At some point the flesh of Genia’s arm took the place of the rubber ball, and our agreement had been ratified. We had ushered in a new era — this is real; this is how we’re dealing with it together — but somehow the evening felt anticlimactic. What that moment lacked in immediacy, it made up for in slow-building potency. It seemed a little too easy. It was a little too easy.

Weeks later, an alarm on Genia’s phone yields a sigh and a grimace. It’s time again. I notice this most frequently on Sunday nights. She gets Friday and Saturday off; somehow the extra day in between makes it harder.

The injections still burn. She described them as someone lighting a fire underneath her skin. Three nights a week, and I can’t put it out. I don’t even usually see it. She’ll quietly head off to our bathroom and emerge again as the flames begin to lose oxygen.

She had another relapse in the past few weeks. We’d made some peace with her diagnosis, and already the disease was ripping through it again. There was leg pain, of course. Weakness in her wrists. And a strange new symptom where one eye saw reds much more muted than normal.

Most of these have passed. Her reluctance to talk about them hasn’t.

Over beers one night, a friend and I came up with the perfect solution. (Danger, danger.) I’ll laminate one of those pain charts they use in the hospital, with a scale from smiley face to death scowl, tape it to the fridge and let her move a magnet up and down every day.

I get to know. She doesn’t have to talk.

I made her laugh when I pitched the idea.

And now — literally, right now in front of this keyboard — I see. That’s what I have to give.

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