Tuesday, May 6, 2014

The Things We Lost

One beautiful, late September morning in 2007, I realized it was probably going to be my last day of being just my then 3-year-old daughter's mom. I spent the day with her, having a picnic in the back yard, going for a walk, and trying to make the most of our bittersweet day. My contractions got stronger throughout the day, but I wasn't in any pain, so I waited for my husband to finish working. Five o'clock seemed like a reasonable time for him to wrap things up, so I told him no hurry, but we should probably call his mom to come watch our toddler before too long.

When she arrived, I told her I was sorry we'd had to disturb her, since I was sure we'd be sent home. Even going to the hospital at that point seemed a little silly. I was as comfortable as a woman who loathes every stage of pregnancy can be. The contractions were practically little belly massages, a sharp contrast with the first time I'd attempted to admit myself to the hospital to have my first child. That time, taking into account that I was in a great deal of pain but only two centimeters dilated, I'd been given a shot of morphine and told to go home and rest up. Our daughter hadn't arrived for another two days.

My husband Jeremy and I left the house in very high spirits, joking and laughing all the way. We weren't terrified like we'd been the first time, and again, we believed we'd be turned away.

Once again, I'd misjudged my own labor pains. This time, the nurse told me I was at seven, and encouraged us to check ourselves in.

Our jovial mood hadn't subsided, and we bantered happily as we filled out the paperwork with a pretty, blonde nurse a few years younger than ourselves. The first time I'd been comforted by the older medical professionals, but this time a younger nurse suited me just as well. Our first birth experience turned Jeremy into a firm believer in childbirth amnesia, which he claims sets in within less than a week, maximum. Despite the fact that my prior experience had been long and agonizing, I wasn't worried.

However, even in my most confident and happy moments, I am not one to forget he possibility of disaster. It occurred to me that I wanted to make clear that, mother or not, I still valued my own life. I'm not sure why I worried that no one would bother trying to save my life if it came to that, but it couldn't hurt to address it. I looked at my husband.

"If anything should happen to me," I told him (mostly kidding), "I want extraordinary measures taken. Extraordinary measures!"

"A hangnail? Erin wouldn't want to live this way. Pull the plug," Jeremy quipped back.

What can I say? The man knows me. Discomfort is not my thing. Every bout with the flu leaves me praying for death, and I wonder how I'm going to fight a real illness when the time comes. As a matter of fact, this wasn't far from my mind that day. I remember remarking to Jeremy that this was the last time I'd be checking into the hospital for a happy occasion. Next time, I would be dying of cancer. And yes, I really was happy - I wasn't being morbid, just honoring the moment. A lifetime of wondering about the kids I might someday have was most likely coming to a close, my curiosity replaced by two lovely people. The future would soon be the past. Having a 27-year head start on my daughter when she was born had brought me some precarious comfort - I finally had a loved one who wouldn't grow old on me.

I still smile at the memory, and I'm glad there was a time I could say such a thing. But it's not a joke I would make again. I look back fondly and wonder what the hell I was thinking at the same time. Now, every time I hear a story about a family fighting to take a brain dead loved one off life support, I think of how horribly wrong things could have gone had Jeremy been forced to make such a decision.  Did I even know what extraordinary measures were? In front of a nurse, no less! Would she have been called upon to recount the incident? What could she have said? "Yes, she explicitly said she wanted extraordinary measures taken just hours before she slipped into a persistent vegetative state, but I think she was probably kind of joking."

The Terri Schaivo fiasco had happened not too long before, which I suspect may have contributed to any of it popping into my head at all. Apparently, my takeaway was "better make sure my lungs and heart keep working long after my brain is gone, just to prolong everyone's trauma."

Psychologically, financially, and in every other way, I could have unwittingly made a hypothetically awful situation a hundred times worse for everyone I loved. Meanwhile, I would have escaped into sweet, sweet brain death, and been the only one spared.

Within a few hours, my pain escalated. I responded by requesting an epidural, because you know what? Fuck childbirth. I'm in it for the babies, not the experience.

Around 3:30 AM, our beet-red, shell shocked son emerged. He was whisked off to the NICU with meconium in his lungs, low blood sugar, and jaundice. I don't like to overdramatize this, as I know many parents who spent months in NICUs with babies who might easily have not made it. They have all my respect, because my son's 24-hour stay was the longest day of my life. It felt like months and months. It was the first of the many lessons our 30s have sent our way, all driving home the same point. You are not invincible. You're going to get sick, you're going to die, and while you may indeed get the long life you feel entitled to you, I'm not making any promises. The universe seems determined to make its point. True, it's a point it will eventually make clear to everyone, but it seems as though it embarked on an especially ambitious plan to let us know that day.

Since that day, this message has besieged us over and over in various ways, but its favorite calling card is my husband's mysterious illness. MS, maybe? We don't know. He's tested negative for every disease under the sun. What we do know is that, for the past three years, Jeremy has slowly been losing his ability to use his limbs. He walks with a cane now (originally adopted in part because he didn't want people to think he was drunk, but he also needs it), and has days when he can't feel his arms or legs. He limps badly, and although the severity ebbs and flows, he is never well.

I know we're not unique. All of us face an uncertain future, and Jeremy and I have spent the past few years confronting that fact every second of every hour of every day. It's starting to get to me.

We both continue to go through what I suppose is a chaotic version of the five stages of grief, which are, of course, always chaotic. A year and a half ago I felt a strange, serene sense of acceptance. At one point, thinking he might soon receive a definitive diagnosis of MS, we even spent a couple of weeks feeling absolutely elated (I swear it made sense in context). I think it was the only time our feelings on the subject have overlapped.

Six months ago, I was furious. As an adult, I have tried hard never to engage in asking "why me?" This is partly because whatever I think my problems are, I know perfectly well I'm very fortunate. But mostly, I know that no matter how many times you ask "why me?" the answer will come back the same. The cosmos, the universe, god, random chance, or whoever else is or isn't in charge will answer back with "why NOT you?" every time.

About two years in, the day when the question hit me for the first time. Why is this happening to us? Why can't it happen to someone else? I'm a therapist. I know a normal, unavoidable reaction to misfortune when I see it. I'm not apologizing, but I also know it feels miserable.

For the time being, I've settled into a dull, constant, droning depression. One that is still somehow not as crippling as bouts of depression that have come in the past for no decipherable reason at all.

There's no denying we get plenty of sympathy and support, and I appreciate every kind word. There are some who don't seem to grasp the gravity of the situation, but more who do. People are particularly sensitive to the fact that he doesn't have a diagnosis. "It must be so hard to live like that," they say.

Yes and no. If he had a diagnosis, we'd know what we were dealing with. There might be actual treatment options instead of just symptom management. We'd have a better idea of what the future might look like, or at least we'd get to believe we did.

On the other hand, the concept of closure, the idea that even the worst news would be better than none at all, isn't true. No diagnosis is vastly preferable to some of the diagnoses he could have gotten by now. That's what I believe.

Recently, when I wrote about a particularly trying (and seemingly unrelated) few weeks, my intention was to laugh at myself. I'd like to think I succeeded in writing a lighthearted take on that particular state of affairs. But the truth is, nothing right now is unrelated. A small group of Facebook friends instinctively understand this. They are the  ones who have had sick or dying spouses and young children at the same time. They aren't close friends, so I connect with them almost exclusively online. I have secretly come to see them as my tribe. They respond to nearly every whiny status update with total support and compassion, despite, or maybe because of, the fact that every one of them has been through far worse. They'll take me under their wing, I think because they understand much better than I do just how temporary what little security I have right now may be.

The constant, underlying stress of my husband's illness can make dealing with everyday nuisances feel almost impossible. Keeping track of details, dates, and paperwork are not strengths of mine under the best of circumstances. It all seems like too much to ask. Life just keeps on coming, though, with no regard whatsoever for our feelings of being imposed upon.

Here's what I believe. My husband will not die of whatever is ailing him any time soon. He will continue to decline, and will be in a wheelchair within five to ten years. We will be grateful that it's his body betraying him instead of his mind. We'll deal with it, but it will be hard. Our kids will continue to amaze us in much the same way they have so far, mostly because they do not remember any other way. On what do I base these predictions? Nothing. Nothing at all. I made them up.

Perhaps it's the worst I am able to process right now. Yes, I entertain the possibility of things getting even worse than that, but not for long. Not seriously. Conversely, I briefly consider that things may not be as bad as they seem. Maybe we'll find out what he has, and it will be something treatable. Maybe all the symptoms will go away as mysteriously as they came. But for whatever reason, it's every bit as hard to imagine the best possible outcome as it is to imagine the worst. I can't do it.

What worries me the most is the distinct possibility that this may be as good as it gets. I may look back on this in much the same way I remember that stupid young woman demanding extraordinary measures because she did not know any better.

Case in point? One day, Jeremy brought up the possibility that we could be blindsided. What if I died in a car accident, or got terminal cancer?

"Oh, no. That won't happen," I assured him. "I'm going to live a long life. I've always know that."*

*Do not try this at home. If you know a sick person, do not say anything remotely like this to them. I was able to pull it off because of who I am, who my husband is, and who we are together. Even that assumes I actually pulled it off, and he's not quietly hating me for it. 

No comments:

Post a Comment