Please Sir, may I have some more?
Regardless of how much food or drink is in front of a dysphagiac the only question is, “am I able to swallow it?”
Sadly, there are more than enough opportunities for malfunction to occur. Throw in a tumor, distended blood vessels, nerve damage, radiation damage, a stroke, and normal swallowing becomes a thing of the past. Welcome to a ‘new normal’ where swallowing and often speaking too is no longer a natural process, eating becomes an obstacle course, and words spoken are heard as mumbled glorp theaped ngbeebrd, ulbbrty bnithp rmdiiwurmph.
To me food is life, I
love food, and to me food is love. I
love planning food happenings, shopping for it, all the prepping, the smells, and
the sizzles, all the sounds of a bountiful kitchen, the steam, and the bubbles,
the transformations from uncooked to a beautiful finished product. It’s a magical art. After the alchemy of the kitchen, the table is
where human interaction is at its most vibrant.
That dynamic too is pretty much denied us, as if you have dysphagia you
don’t get to taste the roast, and say, ‘please pass the potatoes.’ Sitting around a festively food laden table is
an exercise in futility as speech is undecipherable and food inedible. Not only does one not get to participate in
the food, one is usually excluded from conversation as it is too hard to be
understood in the noise and excitement of the event. Compounding the functional
loss, facial scarring, drooling, or dysphonia (lack of ability to speak)
exacerbate the unseen social gap that can balloon into a cavernous vacuum of
aloneness. You lose social connections,
friends and family, validation, community, so by default, you can experience
lack of satiety on every level.
Over the last 20 years my dysphagia has gradually progressed
from being a minor swallowing and speech irritation because of tumor excised at
the very back of my tongue in
1999. This required cutting out a small piece of my tongue, with that came scarring, muscle and nerve damage. Just a little. Nothing major, barely noticeable, except to
me, a loss none-the-less. Little did I
know that this was the first in a trail of aggressive cancers that would change
the trajectory of my life. My speech changed just a little, I noticed just a
little bit of aspiration, nothing major, and nothing visible, completely unseen
by others. Seven years later came Chemo
and Radiation, off course, radiation has left its trademark trail of destruction,
scarring, fibrosis and other baggage. When
cancer re-emerged a third time, there were
nasty tumors that required the surgical
amputation of over half of my tongue, a long discolored indentation and scar on
my neck, a huge scar on my wrist, and a skin graft scar on my thigh. In 2019 tumors on the roof of my mouth
required a Maxillectomy. Whacking off the
right side of my upper jawbone, teeth, and some of my upper palate (In my
head, I play an imaginary sound bite of the crack of that bone when they cut
it, yea, I scrinch too as it makes all those parts of me slam shut!)
I cannot go to I Hop and order pancakes and scrambled eggs
for me. But I do have a beautiful picture of breakfast at I Hop with #3 grandchild after we ran our second 5K Color Run. We were both all rainbow grungy, and ready to
eat our well-earned post-run carbo breakfast.
I watched as she gleefully waded
through her well-earned a stack of cream and syrup drenched pancakes. I very
carefully drank my coffee and played with a teaspoon of Blueberry pancake
syrup. That day we not only did we wear
our matching pink parkas to ride Tella the Harley, we also ran the through the
mists of color across the bridge, we both got our medal, and we got an IHOP fix
too. It is such a great memory, and I
have the most beautiful pictures of that morning. I HOP crappy coffee never tasted so
good!
Dysphagia means you seldom engage in any form of public
eating, so you don’t meet up with friends for lunch, then you don’t get invited to dinner, because
you don’t eat, it makes people feel
uncomfortable. One effectively becomes invisible as so many of our activities
revolve around celebrations of hospitality with food and drink, so as you do
not feature around the table you cease to exist. Regardless of how non-drama you are about
your not-eating status; you and your world become very, very small.
If you are a ‘tubie’ it might be much easier, as you still can
discretely plug in and hang out and participate while the folks around you are
getting their grub on. People are
forgiving, a bit curious and more than polite, so be brave, try it. I have taken my little immersion blender to a
restaurant, and asked the manager to blend my soup and bring it in a cup. They
were more than happy to oblige and did not need to use my trusty little
immersion stick blender which I just happened to have in my bag. One of our local Mexican food joints is
particularly good about it, while they are blending my soup I get to do slow
justice to a Frozen Beer Rita - with a
soup spoon as I cannot drink through a straw.
It is so good, basically it is a beery lime tequila slushy sorbet. Don’t knock it if you haven’t tried it. It takes too long to finish this frozen
concoction, as each normal one swallow takes me at least five swallows. Gets to
be very tiresome, but for a few slurps of a good boozy slushy it is worth it.
Can I multi-task as
in eat and talk? Hell no, it is one or the other, not both. Very occasionally I will join my daughters
and my grandchildren at their monthly ‘late afternoon Mommies meet-up’. Here is my compromise, I drink my gloopy
soupy before I leave the house so I am not hungry. At the restaurant I order food to go so I can still
enjoy the restaurant at home later, and then I order a really great drink so
that I have something in front of me. There
is a small win, I get to dress up, look
pretty, I get to hang out just a little, I do get a little interaction, and validation
that there is still ‘the me’ behind this thing dysphagia. True, it is not the same, and it is just a wee
bit hollow as I don’t get to mindlessly pick from the chips and salsa, nibble
on that decadent crusty bread, I cannot dive into a medium rare steak, or a drippy bacon burger, nor
can I destroy a killer loaded baked potato. Do I chat with people across the
table? Not really because I know I am too hard to understand. Invariably I will leave hungry and unfulfilled
because it’s just so damn hard. However,
will it stop me from trying? No because it’ not always about me, and so I try to
focus on what I can, not what I cannot.
As I leave the
restaurant with my little to go box and swing
onto my beautiful big girl toy in the parking lot I momentarily indulge in self-
pity as I visualize that scene from the
1969 ‘Oliver Twist’ movie. Young Mark Lester, with that divine English
accent, plays the pathetically scrawny orphan Oliver Twist in a Dickensian England
work house. Holding his empty bowl of
gruel Oliver Twist looks up into the rounded face of an morbidly obese Mr Bumble, and says, “Please Sir, I want some more?” Well we know how that turned out!
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