La La How The Life Goes On

Archive for August 2014

Someone recently asked me if I had changed since having my transplant, a question I’ve been asked on the regular since 2007. Leaving aside the question of why me experiencing some kind of transformation seems to be important to people, I decided, now that I have some distance from it, to actually ponder what I did learn or change about myself. Well, I wish I could be all Deepak about it for you and claim increased awareness of all things or expanded connectivity to all beings. Or even a commitment to flossing more than once a day. But I can’t.

“You’re probably nicer now? More peaceful?” the guy offered sanguinely. Oh, honey. You’re mistaking me for a country song. I did not go sky diving or Rocky Mountain climbing. I did not pray to be a rainbow shining down on my mother. And I very truly never spent a moment Hoping You Dance. He didn’t know me pre-transplant, so can be forgiven for imagining that I’m now somehow a kinder, gentler version of my 2007 self. But he’s still a bit wide of the mark.

The transplant simply was what it was: an effing terrifying health crisis. The kind people have every day across my town and across the globe. One that I, thank you Jeebus, survived. A privilege denied to many.

My primary memories of that time involve worrying about Bambina, who was 3 at the time, calming her fears and meeting her needs as best I could in order to keep her world as predictable and boring as possible. I may have psychologically survived the whole ordeal simply because I didn’t have any bandwidth left after chemo and transplant exhaustion to navel gaze about Poor Me. I just wanted my kid to emerge from it as unscathed as possible, and so any energy I had went towards her. Days I was certain I could not get out of bed lasted about 4 minutes until I saw how badly she needed to see me get out of bed. So I got up and got on with it, dragging my ass out from the covers and into the daily grind. Then as soon as the door closed behind her on the way to preschool I went back to sleep for 3 hours, then got back up and showered before she got home. Mama is down, but she ain’t out. Mama is wearing sweatpants but she’s no slouch. Mama may be a wee bit bald, but she is the queen of the combover! Recognize!

So, if pressed to identify some kind of metamorphosis, I can cop to a couple of things. On the philosophical side, I suppose I am simultaneously more afraid and less afraid of everything. I’m more afraid of dying in one sense because I don’t have the intellectual fiction of most people that it won’t happen to me. I fully know that I could go tits up in the next 5 minutes for any number of reasons, and this terrifies me to my core only because I have kids. The thought of leaving them is the third rail in my brain that I’ve had to touch several times already. No amount of time or distance ever makes approaching it easier. It is the darkest, blackest, most soul-devouring prospect in the universe. It is the Harry Potter dementor made real, a malevolent specter that, when pondered for more than a fleeting moment of “what if”, leaves me fighting for breath, certain that I will never feel joy again.

On the other hand, I’m less afraid of dying because, well, it is what it is. Come at me, bro. I already know I can’t control it, evade it, fight it, or pretend it doesn’t exist. I made my uneasy peace with it years ago. It’s like finding out at 5 years old that there really is a monster under your bed. It’s real, it’s always there, but it’s not going to devour you tonight. Or tomorrow night. Probably. And so you just learn to coexist with it. You know it’s there, you wish it weren’t, but you just busy yourself with other things and try to ignore it. You turn that clock radio up, turn the box fan on and go to sleep because that’s what people do. In my case, the creature crawls out about once a year, flops on my bed and scratches its balls while announcing “mah bed now.” And I (with the assistance of vancomycin) wrestle it back below. Yeah, it is unsettling and disquieting, but that’s how the monster and I roll. But I also don’t fret too much because I know in my heart that, should the world continue inexplicably to spin without me, those I leave behind will be just fine. A parent’s job is to prepare your kids to live a happy, fulfilled, productive life without you. I just do that anyway with a little more urgency than I otherwise would in a different world.

Beyond the mortality question, I’m also a mixed bag of compassionate understanding. In one sense, I just give everyone the benefit of the doubt because I have needed it myself so many times. I’m skipping the parent meeting not because I’m lazy or uninterested but because I just returned from my pheresis appointment that physically ruins me for 24 hours. It’s dialysis for the white cells, with all the fatigue that implies. I’m sending regrets to your dinner out not because I don’t want to come but because I can’t eat at buffets or consume sushi. And I for realz cannot eat at your sushi buffet! I’m a bit scattered in replying to emails, not because I’m a jerk who thinks you aren’t important. I just always plan to respond once the kids are in bed, and some days I am too tired to even slide one finger across an IPad, even though I KNOW you need a response. I really am sorry about this. Fatigue is kind of a constant in my life, mostly due to treatments and meds. When I can drop some meds, I’ll be more on the ball. But the truth is that every single day I open my eyes I feel like absolute shit. Really. Tired, nauseous, a bit dizzy, and Not Ready For Prime Time. I just need an hour or so to ramp up, get my head right, and tamp down the barfies. Then I’m off like the rocket you have come to expect. But I really truly no longer remember what it is like to awake and feel normal. Someday! Someday. But not today. If it were not for people in the meantime choosing to assume the best about me, I’d probably have not a single friend and people would avoid my kids like the plague. So I understand the desperate importance of humility in my judgments of others, the acknowledgment that I really truly don’t know what challenges they may be facing quietly and courageously in service of needs greater than themselves.

Having said that, complaining bitchasses need to stop complaining. 🙂 Or, more politely, I simultaneously have LESS patience and compassion for malingerers. To be fair (refer myself back to “humility” statement above), I can often be too quick to slap the “that’s BS” label on some nice person’s valid complaints. I own that. But by and large I just cannot listen to anyone bemoaning their Rich People Problems. All I think while hearing the, “and then she totally waah waah, and my sandwich was boo hoo wrong, and the paint color was two shades too dark, and can you BELIEVE the vacation beach house had no garbage disposal?!” Is 1. Are your children healthy? 2. Are you? 3. Do you all manage to eat every day with a roof over your head? 4. Do you have one person in the world who loves you? If yes: THEN SHUT THE FUCK UP. You are already more fortunate than 98% of this planet’s population. Take your good fortune and RUN, Muthaf$cka!. Let all of this petty stuff go, take a look around, and enjoy your family’s health. Because when it’s gone, no shade of paint or type of beach house or insufferable coworker will matter. You will look back and regret every second you spent on mental and emotional dysentery when you suddenly have a real problem that can’t be fixed by whining.

On the more practical side of things, I have learned one key thing. To never ask a sick, injured or bereaved person “What can I do to help?” I now just show up with food. Or rides. Or babysitting. And then I leave. My job as the friend of a person facing something is to unburden that person. Requiring that person to ask me for help, however well-intentioned, is about the most burdensome thing I can do. In all my years of dealing with health challenges, I have possibly managed to actually ask for assistance about 4 times. And each time was truly difficult and stressful because I knew the people I was asking had full plates of their own (eternal gratitude to a heavily-pregnant, ready-to-birth Nancy for almost single-handedly ensuring the contents of our DC house made it into the moving truck to Boston). So now I know to Do rather than Ask. I used to say, “Let me know if I can bring you dinner.” As if the sick person is going to call me and be like, ” Yeah, my kids would love a large cheese pizza tomorrow night. Could you do me a solid?” Never going to happen. So now I call and say, ” I hope your kids want pizza this week because Auntie Esther is delivering, baby! What night works best?” Unburden the already-burdened. Just show up and help. Don’t stay. Don’t hang out unless specifically invited. In my case, don’t expect homemade (I’m the ho that made it!) because any food I’d prepare you would be another form of affliction. So I’ll just be of service via takeout and then move along.

So, with all respect to people who really do have Regarding Henry stories, I just can’t claim the same. I’ll paraphrase the late, great Robin Williams describing the agony and ecstasy of cocaine use: “It expands your personality!…..But what if you’re an asshole?!” So I guess my answer to “how have you changed?” Is that I subscribe to the Williams Theorem: That transplants, like cocaine, expand your personality. Whoever you were at your core before the transplant is who emerges from the rubble of the transplant. People who are bitter now were probably bitter then, or predisposed to it. People who are generous and kind now probably always had the capacity whether it manifested or not before. Me? I’ve pretty much always been a judgey, impatient woman who loves well and cooks badly. Seven years later, as much as I wish I could claim otherwise, you all are just getting More Of The Same.

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Meanwhile…

Posted on: August 21, 2014

The Jones plate is rather full at the moment, so in lieu of actual content, you get anodyne platitudes and LULz. Enjoy!

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Carpe Diem

Posted on: August 12, 2014

Since the apparent suicide of Robin Williams yesterday, social media has lit up with tributes rooted in profound disbelief that a man so funny could have been in so much pain. In every outlet, people are sharing memories of adolescence informed by Dead Poets Society. Memories of childhood on the couch with grandparents enjoying Jonathan Winters and kids enjoying Mork. Memories of all of his varied and influential roles on the big screen. These tributes are often accompanied by lists of “favorite Robin Williams quotes.” Only, the quotes are not Robin’s. They are his characters’. A difference with a significant distinction.

The power, appeal and danger of celebrity is that it makes us feel like we know someone we have never met. It gives us a sense of ownership of that person based on what their work has meant to us in our lives. Robin Williams becomes special to us because Mr. Keating spoke to something in us. Because Mork evokes memories of our childhood. Because Adrian Cronauer spoke to the hopes and heartbreaks of a generation. We felt like we knew Robin Williams. We obviously, sadly did not.

How often do we bring this same false sense of knowing to our personal lives? How often do we assume we know someone based solely on what they have effected in our lives, rather than on what is actually happening in theirs? That’s my brother, the doofus. That’s my sister, the earth mother. That’s my cousin, the yuppie little miss perfect. That’s my niece, the child who always achieves and makes me proud. Families have a way of setting up narratives, story lines. With characters who are expected to play their defined roles. We see it played out at Christmas dinners across the land. You arrive at your childhood home a grown man and within the hour you are the Kid Brother from 1986. You arrive a fully-realized professional woman and leave an insecure 14 year-old. We see the peace rupture when a “cast member” no longer plays their assigned role. When they no longer recite the words we expect them to say, that we need them to say in order for our continued role-playing to make sense. We think we know people. We really, truly don’t.

Just for today, resist thinking that you know someone. Ask yourself “What DON’T I know about this person? What could I learn about this other, precious human that might have absolutely nothing to do with me, my needs or my expectations of them?” See beyond the public laughter and witness what remains privately when the laughing stops.

While you are doing that, consider dropping even one element of your OWN character’s facade. Back in the day, in the midst of personal and professional turmoil, I called a friend to lament my situation, my inability to get out of the hole I had so spectacularly dug for myself because doing so would reveal my current abject failure. Abject failure was not part of my character’s back story, not in the approved script. My role in my family and in my life was to be the Golden Girl. To achieve. To be smart. To be successful. Failure was for other folks. My role specifically called for near-perfection. My friend, the amazing JMW, changed my whole life simply by giving me permission to go off-script: “What’s the worst that will happen if the world finds out you are a sometime fuckup just like the rest of us? You don’t owe anyone a cleaned up version of yourself. You owe us the real you. People who can’t deal with the real you can just move along.” Boom. That script? It’s not worth the imaginary paper it’s written on. It’s not gospel. It’s not canon. It’s something I can rip up and rewrite at will. Yes, that will throw the rest of the cast into chaos, maybe. But they are responsible for their roles. Not me and not mine. From that moment I began to rewrite my script. Began to blog about my fuckups. Began to laugh about them. Began to unload the weight of carrying the hopes and dreams of previous generations on my back. I will achieve what I achieve. The ghosts of my poor, striving ancestors will be proud either way.

So today I’m giving you the gift my friend gave me: permission to flip the script. To rewrite it, delete entire sections, rip it up, burn that mother and all its expectations down. You don’t owe the world a funny, happy, shiny version of yourself. You don’t owe the world a Facebook-ready photo shoot of contentment and joy and fulfillment. You don’t owe the world a damn untrue, inauthentic thing. You owe yourself the opportunity to be the real you. The unscripted you.

The amazing, talented, loveable, fucked up you.

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