Imagine

Byline: Lisa Ingrassia, daughter of a head-and-neck cancer fighter who recently passed away due to complications of dysphagia. Lisa is the author of other NFOSD articles including, “Eat, Drink, and Be Merry…Or Not.”

I challenge you to think of your favorite food or beverage.  The one thing you cannot live without.  Is it your morning cup of Joe?  Or maybe it’s an ice cold beer on a hot summer day?  Or perhaps you love pasta like me?  Pasta with tons of parmesan cheese on top.  Can’t you just taste the deliciousness?  Mmmmm.  Well, sorry you can no longer enjoy those things anymore.

Why?

No, silly, you’re not on a diet!

You can never, ever enjoy those things again.  Sorry.

You are now living with severe dysphagia.  

Maybe you’re a cancer survivor like my Dad was.  Maybe you had a stroke. Maybe you were born this way.  But you can never, ever eat again.  Everything you eat or drink will aspirate into your lungs, and if that happens you will get aspiration pneumonia.

Now put your hand on your belly and imagine there is a tube sticking out.  That’s your PEG Tube.  You now get all your nutrition through that tube.  Careful not to tug your feeding tube too much because you run the risk of pulling it out and hurting yourself.  And don’t hug family members too tight because that pesky little tube is there.  That tube is now your lifeline and your sole means of nutrition.

My father lived with severe dysphagia for over 4 years.  To clarify my father lived 4 years without a morsel of food or an ounce of liquid in his mouth.  In his case, aggressive radiation treatments damaged his epiglottis so severely he was unable to ever eat again.  He also had dry mouth with frequent bouts of thrush.  What’s thrush?  Thrush is an oral infection which was a result from my father’s constant dry mouth and his low immune system.  Thanks radiation!  My father would compare his dry mouth to someone pouring a bucket of sand in his throat but you’re unable to flush it out with water, so you’re constantly choking. As in my father’s case, you’re constantly swishing your mouth with water and spitting it out in a red solo cup.   My father would tell me countless times he felt like he was being water boarded with sand by Navy Seals.

I made it my personal crusade to find someone who could help him.  We tried everything. But everything wasn’t good enough.

My father died asking me for a glass of water.  A glass of water I denied him for fear of him aspirating.  Maybe someday my heart won’t hurt as much when I think of my beloved father begging me for just one sip of water on his deathbed.  But not today, my wounds are still too fresh.  My heart is still breaking.

Some of my father’s favorite foods were crumb cake, black coffee with a sleeve of saltine crackers smashed in the coffee (gross), Sunday pasta, and Remy Martin on the rocks.

I challenge you to think about the impact dysphagia would have on your life, on your family.  Think about celebrating your next special occasion with a loved one who can no longer eat.  No more sipping coffee, no more toasting special occasions, no more birthday cake.  Your loved one now survives on medically prescribed shakes, Gatorade and water.

The below photo was taken on August 21, 2015. My father’s birthday.  To the right of him is his feeding pump.  His pump was humming away while we snapped this photo.  His pump ran approximately 15 hours a day.  During that time he could not lay flat because he ran the risk of aspirating refluxed material even with the PEG tube.  I’m not sure who hated that pump more, my father or the rest of the family.  It symbolized what was taken from us.

I will never forget our conversation after snapping this photo.  My father held my hand and said, “How was the cake?”  Tears filled my eyes, despite my father having his PEG tube for 4 years and I said, “Wasted calories Dad, it was disgusting.” He then smiled and said, “Maybe next year, Lisa honey.”

In honor of my father and countless others living with dysphagia, I encourage you to comment below with your favorite food.