The first big, heavy blows rained down upon my psyche in rapid, merciless succession.
“It’s Wednesday… the 17th. You were just in a coma for over a week.” What the hell happened? I just lost a week?
“You got sick. You had a radical hysterectomy, plus many other procedures. About 12, so far. Maybe one or two more this week.” Maybe? Because you think there might be some part of my body that hasn’t been adequately invaded just yet?
“We’ll try to take the feeding tube off this evening. We wanted to see how you did off the ventilator first.” I’m sorry, clearly I’m still very confused. It sounded an awful lot like you said I’m on a ventilator and feeding tube.
“You look so much better now, it’s really quite amazing. You’ve gone through such a lot. We’ve never seen anyone get that sick and recover. You’re very lucky.” I’ve seen me, just little glimpses in this little compact mirror. My lips are so deeply chapped that they have scabs all around, like the very Gothest Goth ever. My skin is vaguely yellow and papery. My eyes are vacant and a little wild, darting around with the desperation of a trapped animal – the trap, of course, being unbelievable amounts of pain. I have a strange triangular scar under my left arm, which I’m told is the result of my attempts to pull free from the restraints – and, while we’re on that particular topic, restraints? Doesn’t a coma sort of negate the need for such things? And besides, “lucky” is not the word that applies here. Lucky is what happens when you win $10 on a scratch ticket or find a patch of wild strawberries on a hot summer day.
And so on. On Tuesday, March 13th, 2010, I opened my eyes twice, for the first time in over a week. Those split-second glimpses were of a world that was terrifyingly familiar – I had been in a hospital from March 5 to March 8 with very poor results – and yet terrifyingly unfamiliar, with machinery and monitors, strange signs, and a single nurse, sitting in the next room, alternately watching me and taking notes, presumably on the readouts on the monitors. I had absolutely no idea what had happened after touching down on the Helipad at Massachusetts General Hospital, and the two tubes in my mouth and the third up my nose and down my throat made speaking impossible. I looked to my left and saw my husband, and wanted just to touch him, just to prove that he was really there. The simple effort of forming that wish dropped my eyelids shut again, and by the time I was able to repeat that performance, my friend Jenny had taken his place. Both had been crying, but she seemed more open and more hopeless, somehow, so I tried to reach for her. I couldn’t move, and the overwhelming exertion behind this non-action was enough to send me back into the blackness for the rest of the day.
The next day, my eyes opened again, and this time I was able to sustain a gaze and register that the person entering the room was my husband. He smiled, but it was a frightened, tense, shaky smile. A look that whispered, I need to reassure you. I need to tell you not to be scared. I need to comfort you. But I don’t know how you are, or even who you are, at this point. I don’t know whether to sigh with relief or groan under a new load of grief, if you left some fundamental part of you back in that darkness. But I’m here. I’ll stay here. We’ll do this.
The questions – mouthed, not even whispered, because of the tubes and the pain and the fear – started crawling from my mouth. Each query took tremendous effort, from finding the right words to forming them in my head to pushing them through my cracked, bleeding lips… only to fall flat, because lipreading is hard enough without an array of tubes in the way. Repetition, and simplicity, and relying on my sister’s previously undiscovered ability to read lips, eventually allowed the answers to start pouring in. None of them were good.
And then, once the initial big shock wore off – who dies in childbirth, in this day and age, in one of the richest countries of the world? – in came a parade of smaller shocks. None of them were, on their own, especially painful, but the accumulation was agony. I couldn’t form coherent thoughts, and my short-term memory was practically nonexistent. I couldn’t taste what few liquids I was allowed, because a raging thrush infection in my mouth, due to the antibiotics, had erased a large percentage of my taste buds. I wouldn’t be allowed to see my children until I was out of the ICU, and no one was willing to guess when that might be.
I wanted to write it all down, for many reasons. I wanted to feel some tiny sense of control, by placing my own words on paper. I recognized that my memory problems were pervasive and serious, and wanted to document this as thoroughly as possible before it escaped back into the ether that was clouding the back of my brain. I wanted to be able to reassure my children and my husband and my family and my friends of how much I loved them, because every time I fell asleep it felt just like a return to the coma, and it was several weeks before I was able to stop fighting sleep with all the ferocity of a mother bear protecting her cubs; I simply knew that I was going to fall back asleep and lose another week… or maybe longer.
I wanted to write it all down… and I couldn’t. Physically could not do it. I’ve had kind of inconsistent handwriting over my lifetime, adopting different styles at times just for fun, or because I had seen someone else’s writing and wanted to emulate it. So I was willing to accept whatever penmanship found its way onto my journal: this would be the new, post-coma handwriting, and I was even looking forward to learning it, a little bit. But instead, there was nothing but scribbles, illegible even to myself immediately after writing. The characters were small, and jostled together, and unable to follow any semblance of lines or consistency.
It was due to a combination of a horrid, deep, dragging fatigue, one that made the simple act of clicking open a pen into a feat of noteworthy effort. Then, to hold it up and apply it to paper hard enough to leave a mark? Unreal. Even when I had a burst of energy (usually in a small interval after receiving pain medication, when the pain would ease back enough for me to string together two coherent thoughts, but before the relief from such physical misery sent my brain and body into a sudden state of relaxation and almost-not-uncomfortable sleep), I could physically manage the pen, but then could not overcome the tremor.
Apparently the cerebellum doesn’t much like extended periods of complete stillness, such as, oh, a coma, or something like that. And it voices its displeasure by running a bit overactive for the next little while – for me, it remained serious enough for the first week that I could not write more than a brief, scrunched-up, un-Kate-like scribble, a quick “I love you” to the kids or a list of the nurses’ names so that I could write them a thank-you note after being transferred. After that week, it slowly declined, and by mid-April – about a month post-coma – I was able to write pages at a time in my journal, just a pure outpouring of angst and fear and confusion. I know it’s there, and I have flipped through a few of the pages, but as yet I have not been strong enough to read it in depth. It’s just too raw and broken, and I’m not yet solid enough to expose myself to that.
My manual dexterity has continued to improve, over these past few months, to the point that my handwriting appears consistent and legible, albeit with a different appearance than my pre-March penmanship. I have been able to start knitting again, which was a tremendous relief after well over a month of being completely unable to maintain the proper, consistent level of tension needed to create anything worth creating. Eventually I was able to return to an 80-words-per-minute typing speed; nowhere near my former average speed but a whole lot better than those early days back online.
I never thought of myself as someone who took a lot of things for granted. I appreciated my husband, and I knew that he and I both worked hard to create a relationship that is strong and true and solid. I felt blessed to have three healthy, happy children, who have all shown such amazing resilience through a terrible, frightening year. I was grateful to the family and friends, and the friends that have taken a step beyond mere friendship to become family, themselves. I was thankful that I hadn’t lost any limbs, or digits, and that the body parts I had lost were either not strictly necessary for life or were slowly, slowly healing.
But clearly there were some things I took for granted. My hair, for instance: who would have ever thought that my long, thick, straight hair would fall out in clumps and then grown back in curls? My fingernails, with their white tree-ring-like arc showing exactly when I was in the coma, exposed to the big scary medications. And my manual dexterity, my ability to type and knit and write…all of the things that most fundamentally represented me, my preferred manner of expression, my creative outlets.
I know to be grateful for it now, though. I still have days, especially if I’m very tired or stressed out, when I lose the ability to create legible words on paper, and my words-per-minute sometimes shrinks down to startlingly small numbers. But more days than not, now, I have regained sufficient manual dexterity to feel almost, maybe, dare I say… a little bit normal again.
Wednesdays, around these parts, are devoted to the Madhouse: a collection of people writing on the same topic on that day, and then seeing how different people respond to the same prompt. I’m not very good, just yet, at posting my own entry in a timely manner, but this week it’s at least before midnight… If you would like to play along, drop me a note somewhere and I’ll add you to the list. You don’t need to contribute every single week in order to rate a spot on the list… just play along when you can.
Allison – Allimonster Speaks
Barb – Spencer Hill Spinning & Dyeing
Batty – Batty’s Adventures in Spooky Knitting
Dave – Notes from the Field
Eileen – Art Deco Diva Knits
Evil Twin’s Wife – The Glamorous Life of a Hausfrau
G – Not-A-Box
Heather – She Flies With Her Own Wings
Jennifer – Ask Poops, Please
JMLC – Daydreams and Ruminations
Kate – One More Thing
LC – LC in Sunny So Cal
Lisa – As If You Care
Louise – Child of Grace
Marcy – Mittentime
Melanie – usually, things happen
Nikki – Land of the Free, Home of the Depressed
Peri – knitandnatter
Sara – yoyu mama