Written by: Penelope Michel
“Gigi, your kiss is broken.” The wisdom of a six-year-old. I cannot pucker my lips to kiss this precious angel. Some of us have broken bones or broken hearts. I have a broken kiss. My lip muscles never quite made it back after surgery, so I drool too. Sometimes my saliva runs, I really am a spitty thing. That is the stuff that makes life very hard. People don’t like to be spittied on! Can’t say I blame them. Now choking in a restaurant is an all-star event. I have pretty much mastered the art of walking very quickly to the restroom or out of the front door, so as not to mess up the dinner service and enjoyment of other patrons. It takes an act of will power to bring down the shoulders, not panic, relax the throat muscles, try a gentle breath, and then hack up the offending bolus. It is frightening. I have had the pleasure of being Heimliched in a wonderful little greasy spoon in Houston when attempting to do Mexican breakfast with a girlfriend. Thank heavens for one very observant and well-trained waitress. So much for that idea! Ah yes, that sweet rush of oxygen! So far so good, I am still here to tell the tale.
Yes, I do use a lot of napkins to cover my mouth to dab the drips, drools and drizzles – so what! I clear my throat with every bite I swallow, apparently it irritates some people. Not my loss! I do it discretely and quietly, and each one of those is a celebration of my life. I am alive, and yes swallowing food is a battle, but it sure beats the alternative. I can recall my desolation at hearing those words softly spoken by my oncologist, “inoperable tumor.” I later named it “Rat Bastard.” It felt so good to be angry. We did beat it for a while! The beast has done its rounds three times. So stare if you wish, I don’t care. You should wish to be as fortunate as I.
Bravado aside, my world has gotten smaller – a lot smaller – like hitting the minimize button on the grand and exciting big page of my life. The one I have left behind. I admit it took a long time to feel comfortable and step outside of my little safe zone of family. Initially it was easy to feign tiredness and eat in my room, until I suddenly realized that life was truly going on without me.
We are a foodie family, so my dysphagia has been an evolutionary journey of how to pretend to eat at parties when everyone else is stuffing their faces and having a good time. Well darn it, so am I! With a smoothie heavy on carbs and protein before the party starts, I am good to go. Sure the steaks, lasagne, crispy vegetable trays and spicy sausage smell like heaven. Maybe I enjoy the torture, but it’s fun to see everyone having a good time and making memories. Moments that I am still here to create, participate in and enjoy. What a joy. Green smoothies in a crystal champagne flute really do taste good. It’s ok to be different.
When I am really in a ‘hungry hurry,’ I fill the gap with banana and yogurt, smooth tofu ‘n honey, or maybe some fresh ginger or mint leaves with cooked brown rice. It quiets the hungry monster. It is tough and it is disappointing, upsetting, and frustrating, as my eating and speaking have both been severely compromised. It sucks.
However, at the end of the day, I can watch the sky change colours and think on the sunsets around the world that I have seen. I can savour the wins and the losses of this day, because today – I am alive.