Friday, May 30, 2014


I've taken to watching old episodes of House. It's an act of desperation, undertaken reluctantly. It's not that it isn't a good show - oh, it is. I'd seen a few episodes in the past, and although it was intriguing, I avoided it on principle. In my opinion, the "asshole with a heart of gold" archetype is a symptom of all that's wrong with our modern world. I think our modern world is the bees knees, but we could do better, and eradicating the glorification of assholes would be a good place to start.

Despite myself, I've grown to find the predictable formula soothing, and yes, I can see that Dr. House isn't quite as bad as I thought he was. Cuddy runs interference between House, who she knows to be right even if he's a pain in her ass, and the hospital's malpractice liability. Cameron does the same on the other end, mediating for House and the patient, who he has alienated. When it's over, they may or may not consider his saving their life reason enough to forgive him. She defends him to Foreman and Chase (one of whom is repulsed by the patient for his own reasons, while the other shakes his head, completely forgetting that last week, it was he who couldn't deal with the the general public), not because hey, this happens every damn week and the boss is always right, but because she has a schoolgirl crush on him. Wilson is there to remind us not to go thinking we're any less dysfunctional than House, because look at him! He may look like he has it together, but actually couldn't refrain from cheating on his wife even if she were the only other human on earth (he'd find a way). As far as I can tell, Wilson's job description is unclear. "Look at yourself," he seems to tell the smug, judgmental audience. "I mean, really look at yourself."

But I'm in it for the patient, who has mysterious symptoms and almost dies. Halfway through the episode, House and his amazing team think they're on to something, but nope, that's not it. Have no fear - they'll figure it out the second time around. By the end, the patient is almost always on the road to a full recovery.

I've been hoping a Dr. House would come along for us for at least two years now. Someone who would take on Jeremy not because they cared, but because his case was fascinating. We have plenty of support from friends and family - I can hold Jeremy's hand, just about anyone can hold mine, so we don't need a doctor to do it. However, so far, we've found doctors who care to be the better choice. None of them are curious, except maybe our family doctor, who isn't too proud to admit it's out of his league.

The first few looked at negative results and sent him on his way, claiming nothing was wrong. Now that he has a neurologist who is both unbelievably competent and a lovely person, I get the satisfaction of knowing I was right (nice people are better than jerks, so there. Suck it!), but I also have to face the fact that Dr. House is a fictional character. Dr. Jung takes us seriously, runs every tests and takes the time to give us detailed explanations because it's her job, not because she's developed an obsessive need to figure out what's going on.

Most of the time, I think I've given up all hope of Jeremy having something treatable, let alone curable. But I suppose I haven't, because here I am, watching every damn episode of House in the hopes of seeing something I recognize. So far, I've got nothing. but I'm only on episode 9. If Jeremy resembles anyone, it's Dr. House himself. Except for being a drug addict and having a terrible personality. Well, some people might think he has a similar personality to Dr. House, but I know better. He's just intelligent and stoic, is all. Not even that stoic, actually, he just pretends to be around people he doesn't know very well. Mostly it's just the limp and the cane.

Getting older means learning you know nothing. Breaking my own rules gets easier and easier. I just love this show.

Monday, May 26, 2014

We May Experience the World Differently

Several days after the fact, I realized I prefaced this with two paragraphs justifying why I was alone. Although I'm prone to copious editing after the fact (is that bad form?), in this case I'm going to leave it, and assure you I did it for all the wrong reasons.

I've never minded going places alone. A companion is fine, but not having one isn't going to stop me from doing what I want to do. This was even more true when I was young and unencumbered. Movies, restaurants, museums - if I wanted to go, I went. I was shocked to learn that some don't enjoy being alone, or are even self-conscious about it.

One thing I did know, though, was that this was considered unsafe. I rarely felt threatened, but I knew I was supposed to.

One night, when I was about 19, I saw the movie Seven, in which Brad Pitt and Morgan Freeman team up to catch a serial killer. I was disturbed, but not overly so, and when it was over I walked to my car.

When I was almost to my car, someone summoned my attention somehow. I don't remember what he said, but I truly don't believe it was intended to alarm. I was alarmed. I turned around and there was a man standing behind me. Old. Maybe 30!

"I saw you at the movie, and you looked like you were really getting into it!" Yes, I'm told I'm quite demonstrative with my body language and facial expressions. "I was wondering if you'd like to get a drink?"

Here's what I heard. "I was watching you watch a movie, and you had no idea. When it was over, I could have struck up a conversation with you in the crowded, well-lit lobby, but instead chose to follow you to your car (again, you had no idea) and approach you in a deserted parking lot. I did all this knowing you'd just watched a movie about a serial killer."

"Um, I can't, I'm not old enough," I stammered, and hastily got into my car and drove away.

The age of thinking 30 is old has come and gone, although I'm not sorry my younger self thought it was. But even now that 30 sounds positively youthful, I can't help but wonder if he'd really managed to live that long without developing some bloody sense. Was he really that stupid? Or is it a really, really good thing that I didn't go anywhere with him, and got out of there as fast as I could?

Mid 20s. I was waiting for the bus in the pouring rain. I was freezing and miserable. A man pulled up in next to me and offered me a ride.

A ride would have gotten me home in five minutes instead of 25. I would have loved to be out of the rain. I could not take a ride with him. I declined. Politely.

He looked insulted and enraged. He slammed his hand down on his steering wheel and slammed on the gas. I felt a little guilty for hurting his feelings.

I shouldn't have. I didn't owe it to a total stranger to gamble with my own life just to prove I wasn't a man-hating bitch. As long as I wasn't in his car, I could make decisions, such as whether or not to get in his car.

Here's the thing, asshole. If I'd decide to get in your car, it may have been the last decision I ever got to make. Even if not, I have reason to believe something very bad would have happened to me. Because you were not a good guy. How do I know? A good guy might have offered me a ride, but he would have also understood why I didn't feel I could take it.

Late 20s. I had a car again. I was happy with it, but it was an imperfect union. The day came when I had to leave it in the shop. One of the guys there offered me a ride home. This time, I took it.

We got on the freeway, and I told him where I lived and which exit he should take. He drove by it. He drove by the exit I told him to take. I weighed my options. I could jump out of the car right here and now. It would almost certainly lead to death, but all the same, in 20 minutes I might be wishing I had.

Luckily for me, I hadn't chosen the wrong guy to accept a ride from. He was a nice person. Even perceptive. He noticed my panic, and although he didn't address it directly, he told me he knew my neighborhood and had his own route. He wasn't lying. Problem solved, this time with a man who apparently wasn't an entitled moron.

These are minor incidents, just three of many. But they're the stories I flash back to when things like #yesallwomen come up. Times when a man I didn't know and I shared an experience that looked absolutely nothing to him like it did to me. The bottom line is, being a woman is different from being a man. The fact that some men have the option of not thinking about it every day, or even ever, doesn't make it any less true. And having that option doesn't mean it's okay to take it.

Years later, I sat in my UU church while a fellow congregant spoke. He was a sturdy man, not huge, but slightly taller than average. The topic was something else entirely, but I'll never forget what he said.

"I walk alone a lot at night, and I'm never afraid. But I recognize that I am scary to others, so if I see someone who would have reason to find me threatening, I cross the street."

Tuesday, May 20, 2014

Too Cool for School

At 20, I acquired a dainty lip ring. I loved it madly. It made me feel like a million bucks. I kept it there until, at maybe 22, I realized it was knocking the enamel off my teeth. I still miss it.

Otherwise, I'm not and never was big on body jewelry, or jewelry at all. I almost never even wear earrings. Although I didn't want to take my lip ring out, I felt like I should know how. Which I did not.

On the first day of fall quarter, I noticed another girl in my seminar. She had her lip, nose and eyebrow pierced, in addition to various ear piercings. I wanted to ask her about taking them out, but I was intimidated by the way she was obviously much cooler than I. She probably hated everyone, and would just roll her eyes and sneer.

One day after class, she approached me. She looked apprehensive and uncomfortable. My mind raced. Had I told someone I wanted to ask her about my lip ring, and now she felt obligated to give me a tutorial? No, I didn't remember doing that. What could it be?

"Um, Erin?" she asked, hesitantly. "This is terribly embarrassing, but," she gestured toward her face, "I don't know how to get these out."

It should have been the beginning of a lifelong friendship, but for whatever we never became more than friendly acquaintances. Still, I got to know her well enough to learn that she was many things. Creative, funny, intelligent, and an enormous Morrissey fan. But cool? Nope.

Wednesday, May 7, 2014

Later That Same Day.....

The feeling that all this should be happening to someone else pops at random. On the one hand, the internet is probably not the healthiest place to be when I'm feeling this way. On the other hand, at least it offers a plethora of deserving targets for my venom, which if nothing else has yet to be directed at anyone I actually know.

Immediately after writing about the roller coaster of emotions my husband's illness has inspired, I came across one of those pictures of a kid holding a sign listing their crimes. These are the unfortunate offspring of dim-witted parents who may honestly believe that utilizing social networks to publicly humiliate their children is a good idea. I'm acquainted with very few people who support this, so I have a feeling I may be seeing less of it than your average person. Which is unsettling, because I see it too much.

This particular example was posted by a livid friend. She and I agree on the subject of this particular brand of "discipline" - she finds these posts offensive under any circumstances, and this one was particularly awful. It was a picture of a tearful girl only a few years older than my own daughter. She wore overalls, because another part of her punishment is being forced to wear ugly clothes for the rest of the school year. She held a sign that read:

Today a man messaged me. I should have known not to message a stranger, especially after he sent me inappropriate things! Instead I chose not to pay attention in school and gave him personal information about myself & my family! He said I was sexy, but I am only 13! He is a sick pervert and I am being punished for my careless actions! Dear Teenage Girls, Social Media is dangerous! #selfrespect. 

Lady, I'm in no mood for your antics. Although you're a complete stranger, I am virtually certain you pull stunts like this all. the. time. Because I know you. Not your name, but your game. That, and I know your daughter's name. You moron. You absolute imbecile.

There are so many problems with this, I don't know where to begin. I won't link to it, because the child's mother has already done more than enough to advertise that her daughter is a young, cute, and vulnerable girl who doesn't have a responsible adult in her life and is going to be quite invested in keeping secrets from her parents. No enterprising predator could help but be intrigued. But also? I'm not helping you, bitch.

I was going to list the many, many reasons this mother is wrong and bad and basically the worst mother in the world, but I changed my mind. You're clever enough to figure all that out for yourself.

I'll just say that one of the thoughts that went through my head was, "Why can't she get a mysterious illness and die? Unlike my children, her daughter would be better off without her."

It's an uncharitable thought to have about a woman who probably can't help being stupid. Her daughter wouldn't appreciate it - she'd probably passionately defend everything about her mother. That's the problem with the the "anger" part of coping. In theory, everyone understands that it's normal and natural. In practice, it's ugly, hateful and violent. It makes you think things that don't exactly endear you to yourself, or anyone else.

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.