The door creaked open, indicating that it was time. We gathered ourselves and followed the nurse through the door. Tension hung in the air like a foul stench. We navigated the sterile halls in silence without daring to make eye contact. As Gabe spun his wheelchair around to back into the elevator, I caught a glimpse of his face. It was tight with intensity. I sympathized but felt helpless. We headed down to the radiology lab, Gabe’s livelihood hanging in the balance.
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Gabe - “When we got to Tampa I was feeling tired. When I woke up I did not feel very good. I had to use my cough machine because I felt congested. I tried to get out of bed but had to cough some more, so I laid back down… I knew I was going to end up in the hospital.”
While these symptoms may sound like those of a bad cold for most, for someone like Gabe they require overnight hospitalization. Gabe was born with muscular dystrophy, a hereditary condition in which muscle loss and weakness progress over time. He is extremely immunocompromised.
In his particular case, he was diagnosed at 2 and told he’d be lucky to live into his 20s. Over the course of Gabe’s childhood his condition slowly progressed. While he has some memories of walking, he ultimately was wheelchair bound by the time he was 9. He is now 27, a college graduate, and is living stably out of his parents’ house in St. Louis. Doctors now say that he may live into his 50s.
On this particular day we were in a hospital in Tampa for what ended up being a bad case of pneumonia. The doctors believed that his pneumonia was caused by aspiration- his swallowing mechanism was so weak that food and drink were getting into his lungs. For the first 4 or 5 days, Gabe was only fed through an IV.
“They wanted me to see a speech pathologist before they gave me anything to eat or drink. She wanted me to try water first and had me drink it out of a spoon. It felt kind of awkward because it had been a number of days since I’d had anything to drink. By her interpretation I was having enough trouble that I needed to take a modified barium swallow study before being cleared to eat anything.”
Barium shows up under an x-ray, so by having Gabe swallow some, they would be able to determine where exactly the food was going. His first test did not go well.
“I swallowed once and knew I was having some trouble, it felt very awkward to me. It took a lot more effort than it normally would. Then she had me try vanilla pudding with barium. I started coughing, so she got a suction tube and suctioned out the back of my throat. At that point she stopped the test. She showed me the x-ray and explained the food was getting trapped right above my vocal chords.”
Gabe was given a feeding tube through his nose, directly into his stomach. This is an uncomfortable situation for anyone to be put in, but especially for Gabe, whom all his friends know as a huge foodie.
“Eating is one of the things that is most important to me. It’s one of the things that gives me the most pleasure in life. To have someone tell me that I couldn’t eat anymore was the last thing I wanted to hear. Something was being taken away from me that I had no control over.”
A few days later we decided to try the test one more time to see if Gabe had improved. Although it wasn’t said out loud, the implication was that if there was no improvement, there would be a discussion about a long term solution to Gabe’s eating. The worst case scenario could be a G tube inserted directly into his stomach. On this day I was the one with Gabe in the hospital.
- - -
I felt a pit in my stomach and could only imagine what Gabe was feeling. When we finally got to radiology I put on a lead suit and glove so that I could feed Gabe myself. As I spooned him the barium I watched the x-ray video in my periphery. Gabe was wide-eyed in concentration. Never before had I seen someone so intent on proving his ability to eat and drink. His eyes occasionally darted in the direction of the x-ray, but for the most part he looked straight forward, focused on the task at hand.
After a few trials we were told to stop, and the medical team had a quick debrief in the other room. I looked at Gabe and raised my eyebrows. “I failed,” he said. I didn’t know how to respond. His swallow certainly did not look up to par, but I really had no idea what was going to happen. “Just wait and see, man.”
- - -
As it turns out, Gabe had improved enough to be cleared to eat pureed foods and thickened liquids. The best news was that he was on an upward swing, which was further proved two weeks later when he was cleared to (cautiously) eat as he had prior to his 14 day hospitalization.
Through thick and thin I’ve seen Gabe keep his head high. Despite his unique life experiences, his story is relatable in that we all should be striving to make the best of our circumstances. Gabe’s constant positivity is what has driven me to make a documentary about his life, with stories like this being just small examples of a greater story about an incredible human being. As we continue to work on the film, I encourage you to share this story with those you know, to look at the multimedia content posted on our kickstarter page, and to help us with the support necessary to finish this film and make it as impactful as possible. Gabe is a true testament to human resilience. No matter what the future holds, I know he will take any and all obstacles in stride and find fulfillment in whatever he does. I hope that we can all learn to follow his example.