Once upon a time, many moons ago, I was sitting in an empty dresser drawer which had been pulled out from the dresser and was resting on the floor. I had a perfectly lovely time pretending it was a boat. When I tired of this game I jumped out of my makeshift boat, caught my toe on the side of the drawer and landed on the ground, jaw first, with my tongue clenched firmly between my teeth. For the first time in its life, my tongue experienced almost complete freedom from my body which had so far kept a tight rein on its activities. I’m told that my tongue’s opportunistic escape plan was thwarted at the very last second by a tiny but determined thread of flesh. I am much indebted to my brain for swiftly hitting the panic button and sending me into shock. I conked out and almost all the pain of the event has been wiped from my memory.
We had literally just moved from Canberra to Sydney and were in the midst of unpacking. Thus, I could not have chosen a less opportune moment. My parents took charge of this wholly unexpected development and their mostly unconscious and profusely bleeding three year old. Mum and Dad scooped me up, stemmed the flow of blood as much as possible and researched which hospital in this foreign city was best equipped to care for both my tongue and my CF – all without the aid of a smart phone. Amazing. They handed my little sister over to my grandfather and whisked me off to Emergency. Out of all the characters in this unfolding drama, Granddad coped the least. Granddad held my sister in front of him as she babbled quietly, his arms outstretched, gripping her under her armpits and freaked out because he was alone with a baby. Sole responsibility for a one year old proved a little challenging for him so he enlisted my grandmother’s help.
At the hospital we encountered a slight snafu. The doctors refused to give me any pain medication as they were worried about the effect it might have upon my lungs. Confronted with unyielding doctors, my mum finally burst out: “Fine. Fine. If you aren’t going to give her any pain medication, then give some to ME!” The doctors took a stunned moment to regroup and reconsider their options and wisely decided that medicating their patient was indeed preferable to medicating a stressed and worried parent. Opiates were administered, I zoned out even further, Mum’s stress levels decreased about 0.000002%.
Unsurprisingly, I needed surgery to sew my tongue back on. This was my fifth operation, but the first I could actually remember, and the first during which my odds of survival were looking pretty much guaranteed instead of the opposite. It was a big moment for little three year old me.
I’m scared. The hall is very dark. The shower cap scratches my head but I can’t take it off. I can’t even talk because it hurts too much. I’m trying to be brave. I even answered that doctor who asked why I was here… and I haven’t cried, except at the moment I bit it off.
I don’t remember tripping over the drawer’s lip and hitting my chin. I don’t remember the immediate pain or the trip to hospital. But I do remember lying in Dad’s arms, waiting to be looked at, telling him it had stopped hurting but regretting the words as the pain surged back. I hadn’t ever imagined how essential a tongue is to speech.
I know I will remember this. I will always remember this limbo period. The time when you are waiting for the surgeon’s call to summon you to their table. And when it arrives, you break down.
I’m crying as he wheels me away from Daddy and Mummy. They wave and start to walk away. Straining and squirming I don’t want them to go: “Mummy!”. But I am too late. I am being wheeled into the surgeon’s lair, being laid on a table, having a mask pressed to my face and being told a Peter Rabbit story. A story that disappears into a nothingness so deep and black and tiring.
I wrote the above piece when I was in my first year of high school. I recently stumbled across it. Reading it took me straight back to exactly what I experienced. Not only do I remember the factual details, but I remember the visceral feelings, and quite frankly, it gives me goosebumps.
Biting my tongue off has nothing to do with CF whatsoever, but those hard-to-handle pre-op feelings have been dredged up, repeated, and magnified, over and over again by the surgeries and procedures I’ve endured since then as a direct result of CF. To be honest (and I’m not proud of this) I don’t handle these situations any better than I did as a three year old. In fact, I probably handle them more poorly because I have long since lost my ignorance. Dave has had to suffer through my pre-procedure fears many times. I’d say he’s just as grateful as me when I’m finally under the influence of sedatives.
One of my friends has the ability to fly away to her happy place when unpleasant things are happening to her. I absolutely do not have this ability and I envy her for it. I have one strategy: pharmaceutical drugs and lots of them – they’re made for a reason aren’t they? This is a valid strategy immediately prior to a surgery where they dish out midazolam like it’s coming up to an end of financial year sale. However, it’s not possible in the weeks leading up to a procedure, or the sleepless night before, or during the walk to the hospital where my muscles all but refuse to propel me toward the hospital, or in the day surgery waiting room.
I was recently talking to a patient of mine who had one strategy to cope with considerable anxiety during her pregnancy. Her anxiety was real and warranted and her strategy was sound, but in isolation it was not sufficient to tide her over until her baby was born. We spoke about the benefits of recruiting past strategies that have proven helpful and developing new ones to manage her anxiety. Upon reflection, it seems I need to put my money where my mouth is. An upgrade to my array of strategies is well overdue and is necessary to preserve my sanity, give Dave a break from my adrenaline-crazed-and-almost-hyperventilating alter ego and to give my fight and flight response some well deserved downtime. Now begins the hard work of creating a plan. I have no doubt that I will have many opportunities to hone my strategies!