be real

With all of my friends, family, patients, myself. Always be real and genuine.

stop doing things because of how they will make me look to others or because they are things i think “smart people” or “cool people” or “cultured people” do.

I guess it’s in our genes to care about what people think of us. Not so long ago, being “different” could mean being ostracized from the tribe or cave, which usually meant death. Our civilization has evolved so quickly that our genes haven’t had time to catch up. So mostly, it’s not our fault when we act like someone else to be liked. But we don’t have to anymore…Yee Haw!

I’ve always had this goal. But now, I wonder if I’ve taken the extreme, because I am sobered when I look at reality and the world today, and how completely selfish I live each day. It’s pretty discouraging. What should I do? Stop realizing the truth? It’s almost like I’m lying to myself every day when I close myself off from the needy people out there. What should I do?

Not far from my home, a family including two very young daughters was murdered on New Year’s Eve in such a brutal manner that it’s beyond description. The crime was so horrific that people throughout the city have closely followed the trial of the two murderers. Yesterday the jury in the first trial sentenced one of the criminals to death.

The crime haunts me so much that tonight I find it difficult to sleep. My sister knows a friend of the person who discovered the scene, a neighbor who has been completely devastated by what he saw. Unfortunately she knows-and has shared with me-details that I wish were not in my head. I have a monstrously vivid imagination; it often gets me into trouble. In this case, I imagine the victims’ last moments of life and first moments of death. How terrifying, how confusing, how sad that these lives were cut short so needlessly, so violently.

My dreams are incredibly vivid. Each night its like going to a movie theater in my head. I have had many dreams of my own death in amazing detail. I have been shot in the head and felt the blood fill my ears. I have gone down in a plane crash regretting that I will never see my daughter grow up. Because I have dreamed my death so frequently, I question whether I am dreaming at the point of my death. And obviously so far, I have awakened grateful to live another day.

But I imagine that someday I will question whether I am dreaming and I won’t be. And I wonder whether this mother questioned whether what was happening could be real, and hoped it was a dream from which she would awake. And it makes me weep. I cry for this family that I never met, and for these lost lives that so many grieve because we can’t, or don’t want to, imagine.

So as I lay in my bed feeling helpless to grieve for people I will never know and children I can never comfort, I was overcome with a desire to do something, something to let their spirits know that I hope they are at peace. And I pray their first moments of death were loving and warm and blissfully unaware of what had just happened. What can I do to express how sorry I am that it ended that way for them?

And then it came to me: live. I am alive. And this day-this moment of breath-is a fleeting gift. With an expiration date. My daughter sleeps soundly in the room beside me. My sweet kitty Maybelline jingles her bell at the foot of my daughter’s bed. I can soak up the warm hug of my cotton sheets. And perhaps tomorrow I can wake up and run down my dirt road and smell the summer-but-fall-is-coming air and hear a bobwhite sing. I can live—I must live because they cannot. And to squander this life would be an injustice to them and to everyone who dreamed of tomorrow, and their daughters’ tomorrow, which will never come.

So to be really real, I have to admit that my marriage is seriously ailing. Actually, we passed ailing a long time ago. I think it’s time to pronounce it dead. And I don’t know how.

We are completely different people, with very different approaches to life and different ways of dealing with the challenges that everybody faces sooner or later. I’m a pragmatic realist. I live by a budget and I have a pretty good sense of where I’d like to be in five years and what I need to do to get there. I believe that the only thing standing between me and whatever I want is laziness. My life has been blessed in so many ways that there is absolutely no excuse for not working hard or achieving some level of success—however measured, whether spiritually, emotionally, physically or financially. I’m not impaired mentally or physically, I was raised by educated middle-class parents, and I live in the richest country in the world. In other words, I believe that my life is what I make it. If it sucks, I get angry at myself for not working hard enough to take advantage of opportunities that are everywhere. Because I’ve worked hard and kept my eyes open, I’ve had a career that is generally fulfilling and stable (with a few notable exceptions) even though what I am doing is as far as possible from anything I imagined doing.

My husband is a dreamer. He floats along in life with little or no plan—plans make him nervous. He doesn’t look down the road three weeks. He’s also been extremely blessed to be born into a middle-class family that was able to send him to boarding school, and help pay not only for undergrad but also graduate school. He’s healthy, he’s well travelled, he’s had every advantage, and he’s extremely kind. He’s also extremely unfocused. He’s never gotten his career of the ground, and he has no idea what he wants to do with his life. He’s 40.

It’s not like I haven’t been patient. This has been an ongoing issue in our 15-year marriage. Over that time, I think he’s been unemployed more frequently than he has been employed. And with one exception, he’s hated every job he’s had. But rather than searching for something better, he complains. When his life isn’t going the way he wants, he blames everything and everyone around him. The job market stinks, we live in the wrong place for him to pursue his career, he has too many responsibilities at home. And so on.

For a long time, I bought these excuses. We’ve lived in Florida, Virginia and California trying to find the “right” place. We were on the West Coast at the height of the dotcom boom, when the job market was never better. I left him there several years ago and moved back to the East Coast; for a year he had few if any family responsibilities. And somehow, nothing made a difference.

So I’ve finally realized it’s not location, it’s not situation, and it’s not my fault. I can’t fix it. But in the meantime, I do all the heavy lifting in our marriage. And I do mean all. I am the primary wage earner. I manage our finances; pay the bills; maintain our vehicles; make our medical appointments (his included); register my daughter for school and arrange her extracurricular activities; attend most (not all) of the teacher conferences and PTO meetings; buy the groceries; prepare and file our taxes; make sure we have health insurance, life insurance, car insurance, household insurance, and wills. I’ve found every house we’ve ever lived in (we’ve moved ten times in the last ten years). And if we get marriage counseling (which we have had in the past with little success), it will be because I arrange it.

Clearly I am allowing this to happen. That is my fault. I’m perpetuating his refusal to grow up, and I genuinely want to stop. The problem at the moment is that he hasn’t been steadily employed since March 15, and he has not a penny to his name. Because he’s been jobless and prior to his joblessness we were focused on paying down debt, we have no savings. If I force a separation now, I’m kicking him into the street. Where is he going to go?

My sisters—who lost patience with him years ago—say that it’s not my problem. Let his (70-year-old) parents take care of him. But is that right? After 15 years of marriage, is it not my problem if he is homeless? What if the tables were turned, and it was he who kicked me to the curb? Heartless bastard, kicking a woman out on the street …. And what am I teaching my daughter? On the one hand, I do not want to teach her that she has to settle for a man that doesn’t pull his weight in life. I don’t want to teach her that it’s okay to be irresponsible forever. But on the other hand, it is her father I would be kicking out onto the street.

And yet, I know with certainty that he is motivated only by pain; even he has agreed to that much. He has no internal compass or sense of responsibility or urgency. We (I) have been talking about the coming crisis since March 16. At first I was cajoling, then prodding, and finally demanding: GET A JOB. Now I’m just angry and I want him out. And I don’t think he’s going to learn to rely on himself until he hits rock bottom. Maybe that’s living in his car. I don’t know. And I’m not sure I care anymore.

That’s a lie—I do care. What the hell is wrong with me?!

This is the summary of the last week’s events, in order of their appearance:
A serious storm passed through our area, seriously damaging my father’s property-which, in light of everything else, is still significant because my father is 76 years old and emotionally overwhelmed and this was just one more thing for him to deal with;
-My mother was in the hospital for four days with a life-threatening infection;
-My uncle, my mother’s brother, died this morning after suffering for a long time with emphysema;
-I just found out this evening that my mother-in-law has a large, malignant tumor in her breast.

Now, the universe is not striking everyone around me in order to send me a sign. This is life, and this is the way it unfolds sometimes. These events are not a curse, as overwhelming as they feel. But they do make me reflect.

I think I’m a bit stunned at the moment, possibly a little numb. So maybe the calm I’m feeling is just the quiet before a storm. But the one certainty in all of this is: I am happy that I am here. Here for my family. Sometimes-often-I wonder if I’m a failure because I gave up a career with a lot of perks, moved back to my hometown, took an enormous pay cut and moved into a speck of a house. When it’s time to balance the checkbook at the end of every month and write out our budget for the one that’s beginning, I often wonder what was I thinking?

But then there’s a week like this one. And I remember that I was thinking I wanted to be available for my family. My parents are getting older. My mother has a degenerative illness. My father is getting tired. And I want my daughter to have a connection to all of her grandparents. Especially since she is an only child, I want her to know that she is part of a big family with wide arms.

By virtue of being here, rather than in an office 3,000 miles away 70 hours a week, I was able to spend all day, everyday for four days at my mother’s bedside. Tomorrow morning I’m headed to my father’s house to spend the day gathering yard debris in exchange for a promise of ice-cold watermelon. Tomorrow night we’ll have my in-laws over for dinner and let them know we love them as they make decisions about what’s ahead. Sunday we’ll get the whole family together-parents, sisters, husbands, cousins-and eat too much food and laugh. And next Wednesday, I’ll travel to my mother’s hometown, where her mother still lives, to help my grandmother bury the second son she has lost in her lifetime and cry.

In the end, this is what it’s about. But truth be told, this is what it’s about in the beginning and the middle, too.

For years I have thought that as I was the problem I should sort myself out before anything else. Before having a life. Well that was never going to happen. I think I thought if I tried hard enough I could undo the things that had happened, or not happened, and i would be brand new. Then I could BE. I put it all(life) on hold, as much as I could. But its never going to happen. And now so much time has gone. And opportunities.

Yesterday after dropping my daughter off at the barn, I drove past my parent’s house to work and was horrified to find that Friday night’s storm did tremendous damage all around their house. Somebody mentioned to me over the weekend that the storm hit hard in their area, which is about 20 miles from where I live, and I meant to call my father to check on him. But the weekend got busy, and we’ve been housesitting, and it was Monday before I knew it. Driving through a disaster area of downed trees and roads still bearing the evidence of flash floods, the guilt started weighing heavy. So I called my father as soon as I got to work and promised that I would stop by to see him this morning.

The first thing I see pulling up the driveway today is a monstrous white oak tree lying horizontal between one of the garden sheds and the barn, its amputated roots dangling grotesquely from the massive plug of earth that came up with them. This giant is probably six feet in diameter at the base, and extends 60 feet across the yard with limbs stretching in all directions. The pump line is still in place, through which my father emptied two feet of water from the flooded basement Saturday morning. And the generator is still on the porch, awaiting tonight’s storms and another possibilty of an electrical outage.

The mayhem outside doesn’t seem to dampen my father’s spirits at first. He beams as I walk into the house and calls out the nickname he-and only he-has used since I was two. We talk about this and that, politics and horses, but then he tells me my mother was taken from her nursing home to the emergency room at 5:00 a.m. this morning due to a high fever. I immediately call my office to say I’ll be in late if at all, and then head out the door. I offer to bring Daddy with me, and assure him I will bring him back home. He says he knows I would, but with this storm coming he just shouldn’t be away from the house, in case he needs to switch into emergency mode. It’s true, he doesn’t like to be on the roads when it’s stormy—but he also doesn’t like hospitals. I tell him it’s okay, and I’ll call him from the ER.

As I leave, he calls over the porch railing, “I wish you’d call me more. I wish you’d visit me more. I need to hear from you everyday.”

“I know, Daddy.” But actions speak louder than words, and I leave it at that.

I drive the 20 miles to the hospital, wondering what awaits me there. While for most of us a fever is not a big deal, for my mom it could be fatal. She’s had MS for 24 years, and is confined to a special motorized wheelchair and has only very limited use of one hand—the hand she uses to stay connected to the world through her computer. Her drug regimen could keep a small pharmacy busy, and despite that her prognosis is certain. It’s a matter of when, not if. And the likeliest scenario is that one day, she’ll get a resistant infection and it will kill her.

But she’s in surprisingly good spirits when I make my way through security into her cubby in the ER. The doctors are already with her, taking her ever so long history, using her to teach the third year medical students how to do a neurological workup so that they can see what zero response looks like. She was a nurse in this hospital 40 years ago, so she smiles faintly and answers their questions patiently.

“Other than your, well, obvious physical limitations, how do you prefer to spend your typical day?” the student asks.

“Hang gliding,” she answers pleasantly. The doctors look at each other, hesitate, and then laugh. My mom. Then she gives the real reply, “Studying history, tracing geneology, researching anything I feel like researching on the Internet.”

We wait, and wait. The doctors decide to remove the PIC line still in my mother’s arm to treat last week’s infection. Turns out, it is now the source of the new infection and the probable cause of her high fever. I watch as three doctors carefully withdraw an 18-inch length of tubular plastic from deep within a very large vein in my mother’s arm. Part of me thinks, “Yeesh, that’s my mother.” Part of me thinks, “Gosh, I wish I’d gone to medical school.”

We wait some more. The doctors get the results of a blood test that shows a staph infection-which is the “Big S” of infections. They decide to put her on IV vancomycin-which, I think, is about as strong as it comes-and admit her to the hospital. I drive across town to the nursing home-her home—to gather her things for the stay. I call my in-laws, who visit her weekly; her sister two states away; two friends who check on her regularly; my sister; my father; and, last but definitely not least, her own 90-year old mother. I leave messages for all of them.

She’s still in the ER when I get back. So we wait, and wait, and wait some more. During one of the silences, she tells me my uncle is dying and probably will not live through the night. He’s had emphysema for years as the result of a 50-year, two-pack-a-day habit. And finally, this is the end. I ask if she has had a chance to say goodbye. “Every day,” she says.

While I was out, someone brought lunch in on a tray that is now sitting rather precariously on top of the bright red trash can marked in large black letters “MEDICAL WASTE.” I point at it with a question on my face, and she looks back in horrified amusement. I offer to fetch her some uncontaminated vittles. She gladly accepts. I head to the cafeteria, marvel at the food hospitals will serve perfectly healthy people and wonder if their marketing campaign is “You eat it, we’ll treat it.” I settle on the hermetically sealed yogurt, which I subsequently feed my mother after returning to the room.

My sister arrives. Sometime during the day, the torrent starts again. Sheets of thick, gray rain so heavy we can hear it hammering the roof. It seems appropriate. My sister pops a Maxalt in her mouth, hoping to fend off a migraine.

By 4:00 o’clock, Mom is admitted to a room with a better bed and more privacy. And we start the phone calls again, me holding my cell phone up to her ear to let her speak since her own hands can’t move. First we call her mother, my grandmother. I can hear her crying on the other end. A daughter in the hospital with MS, a son likely to die before week’s end from emphysema. She lost a son 50 years ago, and I wonder as they talk whether it’s a blessing to live so long that you outlive three of your children. But then that seems like I’d rather that she … I focus on holding the phone still and thank God that stuff is not up to me.

When we hang up, my mother looks at me through damp eyes and says, “It’s hard for her. Grandma already lost a son, and now she’s losing another one, and she worries about me—and I feel terrible about that.”

I ask her again if she wants to call her brother. She nods. I dial the number, and hold the phone up to her ear. Her sister-in-law answers, and then I imagine she holds her phone up to my uncle’s ear on the other end.

“I know you can’t talk,” my mother says. “But I wanted to tell you I love you. And you’re my big brother. And I love you.” I can hear something on the other end, but not clearly. “I know what you are trying to say, but don’t try to talk,” my mom continues. “I know what it’s like not to be able to talk. So I’ll talk for us this time. I love you.” He tries, again, and again, and yet again. But she can’t understand him. Finally she says, “It’s hard for you to talk, and I don’t want to make it hard for you. So I’m going to hang up now. I love you. I’ll call you again tomorrow.” Then she mouths to me “hang up.” I do. We’re both crying.

“He just needs to know that he’s loved,” she says. “Because he hasn’t had a lot of love in his life. You know, he’s a banty rooster. And I’m a banty rooster. And people don’t say ‘I love you’ to banty roosters very often.”

“I love you, Mom,” I say.

We call her sister. Mom assures her that she’s all right, the antibiotics are already making her feel better. All things considered it’s been an okay day. Mom hands the phone to me. My aunt wants to know “how is she really?” I confirm my mother’s version of events, and then say, “Please don’t worry.” She starts crying, too.

“I just,” my aunt says, “all of them. I don’t know what to do.”

All I can do is listen, and say “I know” and “I’m so sorry” and “We’re here with Mom, and we’ll take care of her for you.” And I’m thinking that I’ll be seeing her soon, at my uncle’s funeral. I tell her I love her, and she’s crying as we hang up.

I set up Mom’s computer, but the fever has exacerbated her MS so her hand is useless to her. We ignore this fact, and pretend that it will be fixed tomorrow. I turn the TV news on for her instead, fluff a pillow, kiss her on the forehead and promise her I will check on her in the morning. She assures me she’s already feeling better and I should go home.

“Thank you for staying with me today,” she says. “It means a lot to me.”

“I love you, Mom,” I answer. “I wouldn’t have been anywhere else today.”