Happy Anniversary to Us

“If we can stay with the tension of the opposites long enough–sustain it, be true to it–we can sometimes become vessels within which the divine opposites come together and give birth to a new reality.” Marie-Louise von Franz

This is a post about the tension of the opposites.

Today is our anniversary. Seven years ago, we were married on a green Californian hilltop, under a turquoise Californian sky. It was a beautiful day, and I loved every moment of it. It was perfect, and perfectly us. For some, our wedding has threads of consternation. Too soon (we were partners for over a year, and in frankness, David proposed to me only a month an a half in), or not soon enough (it was me who applied the brakes when we’d originally planned 6 months earlier and we’ve caught ongoing flack for it). Too informal, or too formal; too small, or not small enough. Not invited, or invited but couldn’t/wouldn’t attend. Not in a church – at least no church as it’s defined. But we’d both already gone that route and knew we wanted something different. We considered so many places, and all I’d asked–and David happily obliged–was that it be outside; for that is my church. As it turned out, we were married in the back yard of our very good friend, Jennifer, and she even served as our loving Officiant. But it may as well have been in a National Park for that’s how beautiful it was. I wore a deep sapphire blue dress from Free People that I’d bought only the day before, and I carried a bouquet of sunflowers and red tea roses that I gathered that morning. (I still have them). David wore linen pants and a vest with arm garters – very steampunky, and I thought he looked so handsome. Our rings were not the rings we now have. They were actually in the shape of wolves. Perfect. And so with a handful of our best friends forming a semi-circle around us, we exchanged vows. I don’t know about David, but I don’t really remember what words we spoke. I didn’t write mine down. I recall that I spoke so quietly, only to him, and I know I had faith in those words, and I know that I made promises, which I’m pretty sure I’ve kept as well as I’ve been able. He has too. And when we were done, while Jennifer handed out glasses of champaign, our friends spontaneously offered their own words of blessings, or well-wishes or gratitude. At the end, before we took everyone out to lunch, Gurty, our little wolf, decided it was a grand time to leave a deposit in the middle of the soft, green grass. I considered it an omen of good luck — a goodly dogly blessing.

Whatever those words we spoke, I know neither of us uttered “For better and worse, in sickness and in health”. I may not have said those specific words, but the unspoken oath has been maintained.

When ALS entered our marriage, like that uninvited guest about whom everyone whispers, “What is he/she doing here?!”, almost a year ago now, David wrote me an email. Among many things, telling me he loved me for instance, he also said I “didn’t sign up for this,” and he would understand if I had to leave. I read that email when alone, and I remember I sat exactly where I’m sitting right now, looking out into the Spring-like greens emerging from the shrubbery. But I did sign up for this, I thought. Of course no one anticipates that a disease like ALS will be part of their marriage, but love itself demands that we continue to trust, even alongside the worst of the worst. We sign up for it all. Don’t we?

So it must be love because this is the worst of the worst.

Last week, David spent 4 days in the hospital. After two trips to the ER over the span of a couple weeks, I’d reached critical mass and was in meltdown mode. The second ER trip was terrifying to say the least and it set in motion a series of panic attacks that I couldn’t stave off. It happened so quick, you see. I’d wheeled him into the bathroom and stepped out to give him some privacy. This is a teeter-totter. Dip too far one way in being a hovering, annoying, clinging presence and you frustrate the recipient of your caretaking. Dip too far the other way by trying to preserve a modicum of dignity and you risk the risk of all risks. I was only 15′ away at most, and thankfully, having not closed the door all the way I heard the sound immediately. David explained later exactly what happened:

It began with a simple burp, but that burp coincided with a cough. The exchange of air dislodged what he called a “phlegm bomb” which threatened to seal shut his airway. I ran to get the cough assist but that wouldn’t work because I’d have to time it so that he received only the exhalation in order to bring up the glob. I then ran to get his suction machine, even while knowing it was redundant. The glob was too far back and if I used the yankauer I could push it even deeper. For now, he was at least able to move air back and forth. The only option was to do what, for me, symbolizes the all-too real presence of significant danger: I called 911. You see, it was the look on his face. David has what I call selective stoicism. He will openly cry at a sentimental song or commercial, or laugh uproariously when appropriate, but rarely will he display fear. This was the first time I saw real fear in his eyes and it shook me like a 9.5.

That little green goblin of phlegm (this is him!)

was a blessing in disguise, as was the 9.5er. It brought me to my knees by urging me to accept my own limitations. Phlegm is such a sticky, gluey adhesive, but I was quickly becoming unglued. In the days following that ER visit (and all told, David was fine and it wasn’t nearly as bad as it seemed) I unravelled more and more, until finally, in another battle with his phlegm, he declared he was going to the hospital to meet this head on. My immediate reaction was, Wait, can you do that? Turns out you can. You just tell your ALS team that you want to be admitted, and Bam! There you are, having your sleep interrupted 5 times a night.

That four day visit had some great points and some not so great, but I’ll tell you about the best one. All the build-up of that garbage taking up real estate on his tongue is gone. It took hours of working to clean it away, but the ENT doctor was unrelenting. Now when I look in his mouth all I see is healthy, pink skin. We still fight the phlegm of course, but it’s more manageable now. His tongue is a tabula rasa and that makes his breathing so much better and for that I’m so grateful.

But here’s the other side of things. While David was in the hospital, I took a break. I stayed until I knew he was settled, and I returned 3 days later when he was discharged. We texted, but other than that, I stayed out of his care. Here’s what I learned.

There is no such thing as a break. You don’t get to go to your favorite book store, or to the beach with your dog, or to your favorite flea market or the little historic village you’ve passed by and have always wanted to visit . . . for free. You don’t get relief from “self-care” (whatever that is), and you don’t go to sleep having peace of mind. You go to the bookstore knowing that it’s not your favorite, it’s favored by both of you. And when the two of you have spent hours there before, now you walk through the aisles thinking maybe there will be a book . . . and, finding nothing, you leave. Your dog sits in the back, unaware that your intention was to take her to a place she’d never been, and so when you get back in the car and drive past the beach, you don’t feel too bad – but you do. Because all you can think of is that the last time you were at that beach he was walking on his own, . . .

and enjoying the place the two of you secretly thought you’d end of retiring in. And that flea market? The place where he always found little bits-n-bobs to make cool things with . . . all you see is a collection of other people’s junk. And so you leave. You decide you’re going to just pass right on by the little historic village, because . . . what’s the point? But you suddenly make the turn when you cross the floating bridge, finding yourself in a place you’d never visited with him. You get out of the car and recognize the import of this. “Is this how it’s going to be?” you wonder. Can I now only tolerate going to places where we’ve not been together? You enter a cool little gift shop to buy him things, maybe unconsciously thinking that if you turn the right object into a ritual artifact, a piece of magic might break loose, holding at bay the inevitable. And finally, at the end of the day, when you’re back home – the home that is only a home because you’re together – you walk in and hear a horrible noise. WTF is that?! Then you realize what it is. And you try to go to sleep but the noise is still too loud: the noise from the silenced Bi-Pap and you know, “This is how it’s going to be.” And you cry yourself to sleep, because no. This isn’t how it’s going to be because he’s here, just less than an hour’s drive away, getting care from doctors and nurses who know what to do under the threat of a phlegm bomb and you know he’s safe, and that helps only a little bit. So no, this isn’t how it’s going to be — when you eventually have to come home from and to that silence.

Cathy, David’s IV nurse, explains why she loves her ALS patients, calling us both heroes and warriors. But I am no hero, no warrior; I’m only David’s wife, caring for him because I love him; no matter what else befalls, he’s still David. Otherwise, why would anyone stay in this darkness?

Because everyday is a day I get to be with my best friend. Everyday is another day to get angry, exhausted, frustrated, at my wit’s end. Everyday is a day I get to feel blessed . . . and cursed. Everyday is a day when I get to talk to him and hear Tobii’s ridiculous metallic voice named Ryan respond as if it’s David himself. Everyday is a day I get to wash his skin, give him his meds, clean his mouth, lift him in and out of chairs and beds, even while I hate it all – because of what it means. That’s one side of this pervasive and insidious tension. The other side, the side where all of those things are absent, is the silence from the absence of your best friend. And so I stay with the tension of the opposites, everyday. For better and worse, in sickness and in health, where everyday is an anniversary.

P.S. I’m entirely aware that this blog post is more about me than an update of David. I’m also aware that that might make some of you uncomfortable, as if the intimacy of what I share is a bit too close, touches something you don’t necessarily want to be privy to. That’s okay. For you especially, I’ll share this one other image, some of our anniversary cards, as a way to lighten that discomfort, offer a bit of levity – if you dare to read closely, that is. 🙂