Skin In The GameApril 20, 2012
When I was in my twenties, I had the strange privilege and the desperate misfortune of living through a particularly deadly health disorder called Endocarditis. It’s a massive bacterial infection of the heart- either the lining or a valve, which brings on systematic organ shutdown and if left untreated for a mere few days to a week, will lead to death. The great composer and conductor Gustav Mahler died of Endocarditis (as I recently discovered.) The wondrous icon Jim Henson, creator of the Muppets and Sesame Street, died of it too.
I mention my bout with Endocarditis briefly in my bio on my website. In fact, it used to take up more space on the page- as it took up more space in my brain the closer the events were in proximity to my current life. My spotty memories of that rush to the ICU- the hazy unconsciousness/coma state brought on by intensely high fever- the slow awakening from this near death state-the dread of realizing how direly ill I had become- the hope and strength and terror and countless procedures and bags and bags of liquid antibiotics that lead me to recovery—all that…all of it used to loom large as the most foundational memory in my life. Because it changed everything about my life. My body was forever scarred and changed and ultimately healed, but my spirit and soul were also more deeply rooted suddenly in the here and now. I felt what it was like to come to the brink of death, and feel powerless, and terrified, and then to be saved from it all, excruciatingly slowly and painfully, one step at a time over the course of over a year after my month long hospital stay.
It wasn’t really until my children were born in my thirties that any event eclipsed this Endocarditis in my mind. And I believe I decided to give birth to my first child, Josephine, without the use of an epidural because somewhere deep inside of me I wanted to know I was a kick ass survivor. That I had won over the bacteria- that my body was strong and vital and healthy and that I could birth another human into this world without drugs—that I just needed my bottom dwelling primal yells and Deep Mother Chi.
(It didn’t really work that way. I mean, maybe it did on paper. But in actuality, I puked and shook and wheedled the whole 24 hours worth for pain killers. My doula kept me on track through all of my blubbering assertions that I knew I was not going to make it. Through the pooping the table and the clutching her fingers and sobbing like a toddler who’s just realized he’s not the only human being on earth…so yes- I did successfully give birth to Jo without an epidural. A process I would never recommend to anyone. Ever. Turns out, the primal screams were there- that part happened. They were deep and guttural and would have scared the bejesus out of me if I wasn’t already so fucking terrified– SO sure that my body was going to rip itself in half and I was going to die a horrible primeval death by alien life form exeunting from twixt the center of me.)
But I did it.
And then two years later, I did it again- I gave birth a second time. And when the puking and the light-headedness and shakes started again during labor, I took my same doula by the collar of her sweet hand-crocheted baby blue bunny festooned sweater and told her to get me the effing epidural NOW. And she did. And so Truman was born in a haze of sweet dozing sleep as opposed to Josephine who came into the world sort of like the Nazis bombing London.
And it was only these two experiences that shook the Endocarditis out of its Kingly position in my memory. It was only the revisitation of a different hospital (Cedars for the heart infection- UCLA Santa Monica for the kids) that superceded the original hospital experience. I basically just swapped mauve tiles for light minty green. One squeaky waxed linoleum floor for another. One achingly ugly Aztec pine framed print above my head for another equally as soulless and sad.
Though all the smells were the same. Hospital smells. The smells of the beginning and the end of lives. Bleachy cleaners. Floor wax. Urine. Citrus room freshener. Mild liquid body cleanser- no added dyes or odors. Lilies. Daisies. Death.
I don’t live in those memories very often. I do like to ritually revisit the birth stories of my kids for each of them on their respective birthdays- but only if they want to go there with me. I would never press those moments on them- though it is fun to go through the first early photos in each of their baby books. Look at the bracelets. Trace their first footy prints and feel the lock of hair.
(I may have missed my calling as a professional Scrapbooker actually. Though I didn’t and I don’t keep EVERYTHING- I’m a stickler for photos in books. In the right order. With terse captions if necessary. And yes, I’ve scrapbooked our families’ big vacations- was in charge of my own wedding book. Honeymoon album. None of them are ridiculous or overly splendid in any way, but I do have a knack for it. Jesus, don’t tell anyone- it will TOTALLY screw with my hard-ass rocker mom rep.)
On the other end of the spectrum- I have happily stopped revisiting my brush with death so often. That big ripe bundle of memories is mostly safely tucked away on the top shelf of a very dark closet in my brain now, and it only comes out every so often. Unfortunately though, that bundle does tend to come out whenever I am dealing with anything dark and scary- like my childrens’ ongoing health issues, or my own. When my infant son started developing a scary tendency to wheeze and gasp for air in the third month of his life and we discovered he had RSV, I remembered my heart. And then when he had to have surgery to correct a mild birth defect at nine months and they wheeled him away to get aenesthetized, I remembered my heart. And four years later when my daughter came down with a terrifyingly high fever and horrible back pain and had to be hospitalized for 4 days with an acute kidney infection, I remembered my heart.
And then finally this past month what with the initial re-breaking of the foot… and then subsequent scary information I received regarding my beautiful girl’s ongoing bladder issues now having something to do with a tethered spinal cord (SPINAL CORD- gives me sweaty hands just typing it)…and then my own need to revisit the cardiologist to get another look at my Endocarditis-scarred leaky heart valve- getting leakier… it’s been a month of remembering Cedars Sinai. A month of begrudgingly taking down that bundle of santizer soaked hospital memories and having to relive little frightened moments in claustrophobic, fluorescent lit rooms. With tubes sticking out of me and freshly scrubbed healthy men and women poking and prodding and the whole time feeling just so– tired. So desperately….weak…and…broken….and…tired.
And I just want to throw on my running shoes and fly to the beach with some AC/DC blaring in my earpads. To say Fuck You, you magnificent crazy reeling silly scary world! I’m still fucking HERE! I’m alive and my heart is BEATING and I’m running and breathing hard because I’m a motherfucker- you can’t kill me that EASY! But I can’t. Because my foot, she is still healing….
And I just DON”T want to go to Salina Kansas in June to help my mom and my aunt move my grandmother out of her house for the first and last time into an assisted living facility where all her friends now reside because her Alzheimers has finally gotten too severe for her to live alone. I don’t want to be a part of watching the family parcel out her belongings from that beautiful house that used to feel so safe and so lovely and so timeless to me as a kid. But I can’t not go. Because I may not see my grandmother alive for much longer- and she needs me now. And this may be the last time she can actually remember who I am…
And I just want to scoop up my children and hold them close to me and stop time- literally FREEZE it- so that we can just stay in this relatively healthy precious moment together. So that Jo won’t have to go through the fear of small spinal surgery in a few short months. So that Truman won’t wake up with another night terror and have to fall back to sleep shivering and clinging to me in mommy and daddy’s bed (a habit he developed a few years ago, and still has occasional dealings with.) So that they won’t have to crack open my chest—which they will eventually have to do whether this decade of my life or the next. And I will have to again fumble with the ties of that flimsy cheap pastel hospital gown, open in the back for all to see. I will again have to pad down the waxed linoleum floored halls wheeling my IV …face pale and slightly sweaty from the effort of walking…again in recovery. Again. Resting and healing my poor body after they’ve put a small saw through my breastplate and carefully replaced my fluttery, thickened human valve with one from a generous, not so fortunate swine.
But these are just fantasies. Fantasties that I can avoid these and all subsequent frightening moments in my life. Fantasies that I won’t have to go through the crying jags and the heart palpitations and the white knuckle minutes that seem to last days and the dry heaving in the toilets. I cannot pretend. Because as one of my best friends said the other day- “You have too much skin in the game, Hol.” This is the beauty of our lives- this is everything that’s worth anything and this is the center of the horror now.
It’s not that I’m actually all that esoterically afraid of dying anymore. Barring a suicidal end, when and how I die is basically not going to be up to me- and I’m more ok with that than I’ve ever been. Having to live with a chronic heart condition has enabled me to have a dialogue with death like I simply was not able to do previous to my infection. So, I’m far from “fine” with it. But I think I can mostly make peace with simply dying- because it’s the next thing. It’s the next portal through which we all pass eventually.
But it’s the thought of those that I would leave behind that now torture my life-filled, heart beating soul when I must come to the precipice of thinking about death. Now that I’ve swapped mauve tiles for light green, I’ve got too much skin in the game to make anything easy. Everything is costly now. Everything is beautifully, painfully important.
Now that there are two breathing living life forms that came bounding out from twixt the center of me- it’s all changed. There is no more bluffing- there is no more fantasizing. There is no more pretending I am only a lone small little soul back home in my tiny Eastside LA apartment after four weeks in a hospital that saved my life, trying to manage the searing pain in my head that is the healing brain scars, slowly grow back all the hair that fell out and the 25 pounds of muscle mass gone–dissolved from days on end of lying supine in a dreary hospital bed with sheets covered in fading moons and stars.
Now it’s really real. The heart that beats in my breast beats for two other creatures more than for anyone else. More than for myself. And I would do anything to have that heart beat as long as it possibly can for them. To allow for this body to squeeze any life out they need from me now and forever more.
And so basically I suppose, who better to crack my chest open for? It already feels like I have.
“Skin in the game, baby.”
(She pushes the entirety of her poker chips to the center of the table.)
“I’m all in.”