The Perfect Puff

by Erin Brady Worsham on Tue, 2014-11-25 05:00

If someone had told me there would come a time in my life when food would mean nothing to me, I would have told them they were absolutely nuts! Food meant the world to me growing up. I had a slow start in life after my very precarious birth. That resulted in a lot of frustration and I found my comfort in food. It was a good day if I discovered a bologna or liverwurst sandwich in my sack lunch at school and an even better night if Mom made her pork and beans or meatloaf. When we went on our family vacation on Walloon Lake near Petoskey, Michigan, my parents would give each of us $5 spending money, and I would imagine the jelly and custard-filled donuts I would buy at the Dutch Bakery in Alanson, not to mention my favorite cheesie-weesies (Cheetos) from the grocery store. Yes, food was very important to me.

I loved my mother’s cooking, but she definitely was not a gourmet. She prepared tasty, balanced meals, and, like most housewives of the '50s and '60s, she made frequent use of convenient boxed and frozen foods, like instant mashed potatoes, macaroni and cheese, and frozen pot pies. And on really special occasions, like maybe when we had a babysitter, we got to have that most wonderful of culinary wonderfulness, TV dinners! Why is it so much fun to eat your food out of little compartments when you’re a kid? I don’t know, but it was, and I can still remember my brother and I walking along the frozen food bins in the store drooling over the delicious pictures on the boxes.

So, needless to say, Thanksgiving was largely not a “from scratch” affair in our house, but we loved it. And, as my mother was fond of saying, we would “smack our lips!” There was turkey, of course, instant mashed potatoes and gravy, Stove Top stuffing and gravy, frozen butternut squash and gravy, rolls, cranberry sauce, a relish tray, pumpkin pie with, naturally, Cool Whip, and eggnog for the toast! It was the heyday of jello, and I can remember a couple of different creations over the years, my favorite being a cranberry something shaped in a ring that had a delicious sour cream sauce. Now, my mother always made her own gravy, and I loved watching her do it. Nice, smooth gravy cannot be rushed or you’ll have a lumpy mess. The fact that we put her gravy on almost everything on our plate is a true testimonial to its perfection … No, our Thanksgiving may not have all been from scratch, but it was a feast to my big family and there were always seconds! 

I didn’t really learn how to cook until long after I met my future husband, Curry. One of the first things I loved about him was his self-sufficiency in the kitchen. He wasn’t afraid to just throw something really delicious together without a recipe. I can still remember my wonder when I saw him peel and boil some potatoes and mash them butter, milk, salt and pepper. Was that all there was to making mashed potatoes? They were incredible! Mind you, this did not take away my childhood love for instant mashed potatoes, but I made them from scratch for the rest of my cooking days. When I caught the cooking bug, I caught it whole hog! I watched cooking shows. I read recipe books. I made my own bread. I was never happier than when I was strolling down the aisles of the grocery store, dreaming of the meals I would create. In those days, bliss was having the cupboard, refrigerator and freezer full of ingredients and a bottle of white and a bottle of red wine on the counter for cooking and to have a glass with dinner.

Then came the ALS diagnosis in September 1994 and, a few months later, the discovery that I had gotten pregnant with our only child the day after that diagnosis. This was a bitter irony because I had been looking forward to cooking for my little family, and now that dream was on a collision course with what would be my eventual inability to move, let alone live. I would never make my mother’s meatloaf for my son, Daniel. My last culinary act was to make all the cakes for his baptism reception, which was held at our dear friends’ home, on a beautiful September day when Daniel was three months old. In addition to a marzipan-covered baptismal cake, I remember making my favorite cakes, which Daniel would have grown up with, including a lemon raspberry layer cake, a chocolate sour cream layer cake and a cherry cheesecake. That was a wonderful day!

I was still feeding myself when we took Daniel to Ireland at the age of 10 months, but just barely. I was riding a scooter then, and I had to use both hands to lift the food to my mouth. It could not have been too much longer before Curry had to start feeding me. I wish we had a picture of our setup at mealtimes. It must have looked like a daddy bird feeding his young. He would sit in the middle of me in my wheelchair and Daniel in his highchair with the food on the table in front of him. He would give me a bite and then Daniel and then he took a bite himself. I usually lagged behind on the number of bites because I felt it was necessary to chew my food a long time before I swallowed.  

I had learned my lesson about chewing my food the hard way. While I was pregnant with Daniel, I had three choking episodes. The first time it happened I was totally unprepared for how my throat reacted to the choking. It closed completely. I’m talking tight! I could neither blow air out nor suck air in. Of course, my mind and body were all screaming PANIC, but, instinctively, I forced my body to relax. I had to trust that my throat muscles would release and they did. Those episodes never stopped being terrifying, which was why I was happy to sit and patiently chew my food a long time before swallowing.

It was an especially sad day when I had to admit that eating had become work for me, and exhausting work at that. I was having trouble keeping up with my food intake. This was verified by my next weighing-in at the MDA/ALS Clinic at Vanderbilt. I had lost 20 pounds in a month. Curry and I and my neurologist decided it was time to get the feeding tube, which I did during a short hospital stay in June 1997. Because I had a respiratory issue while I was in the hospital, it was also decided that my primary care doctor would now be a pulmonologist. My nurse-advocate friend, who helped me deliver our son naturally, recommended a doctor she knew of at Vanderbilt, Dr. James Snell. He was an older man with a courteous, common sense manner about him. One look in his eyes told you he had seen it all. It also told you that you could come to him with any problem, and he would help you find a solution. I loved him from the start, and we were blessed to have him for many more years until he retired.

I never anticipated having a problem with the tube feedings, so that was a surprise. I was supposed to have five cans of food a day, and I was barely getting down two. The fact was I wasn’t used to eating five times a day! I went to see Dr. Snell. He calmly asked me one question “Do you want to live?” I looked at little Daniel. “Yes.” “If you want to live, you have to eat.” It was that simple. I thanked him, went home and had no more problems.

Now and then I delight in imagining what I would eat if God gave me 15 minutes of effective chewing and swallowing. There are so many delicious foods to eat in this world, but my choice may surprise you. I would choose a single, perfect puff Cheeto, which I would gently gnaw with the side of my teeth, all the while listening to the tiny air pockets popping. Between gnaws I would take a moment to sweetly savor the cheesie-weesie goodness I have loved all my life. Gnaw, savor, gnaw, savor, gnaw, savor, until every last cheesy crumb is gone. Ahhhhhhhhhhh … Now, one can never know if God will gift such a blessing, so it’s best not to count on it. Instead, maybe all you good readers can take a moment to savor a single, perfect puff for me. Not only will I greatly appreciate it, I’ll be really, really full!  

Unlike many past years, I am looking forward to this Thanksgiving with a heart full of hope. I will give thanks for our Daniel being home from college, for sharing the day with old friends and for having people in my life who love me and take care of me. I wish each and every one of you, and especially my ALS brothers and sisters, a heartfelt “Happy Thanksgiving!“  And don’t forget … Chew your food, people!   

About the Author

Nashville artist and writer Erin Brady Worsham was diagnosed with ALS on Sept. 7, 1994. She began using the ventilator on Thanksgiving day in 1997 and has never looked back. She continues to work and exhibit her art as a professional artist.

Says Worsham, "One of the reasons I believe I have lived so long, other than my great husband and son, is that I don't think about ALS. My blog titled Cosmic Connection is about contemplative observations of the world around me that ALS has allowed me to make through the peaceful stillness it has imposed on my life."

To learn more about Erin Brady Worsham, read the following articles about Erin and her life with ALS:

Creativity Soars Over Barriers

Having Children After an ALS Diagnosis

A Turn of Fate

Secrets of Survival

The Artist Inside

First Person Singular: A Magic Carpet Ride

Staying Alive: Does Personality or Belief Make a Difference

Mind Muscle

Life on the Vent

Connect with Erin on Facebook and check out more of her artwork for sale on Etsy.

Erin's blog Cosmic Connection is exclusive to MDA's ALS blogs.

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