No doctor in my home town knew how to take care of children with cystic fibrosis. This is not surprising. It was the 1960’s, and only very recently had there been a diagnostic test discovered which could indicate the cause of the child’s problems, a disease recently named Cystic Fibrosis of the Pancreas. Physicians barely knew what the disease was, let alone how to treat it. So, when my parents drove my older brother and sister to the Mayo Clinic in Minnesota to receive the devastating diagnosis, they were told that a man in Omaha, a three hour drive from our home, knew the illness and could care for them. His name was Gordon Gibbs, and I grew to loathe him.
I’m sure he was a perfectly good soul. He dedicated his career to help families cope with a fatal childhood illness and certainly did not deserve my hatred. He seemed fairly old to me, older than my parents by maybe a decade. I remember his eyes, looking at me from behind very thick glass lenses with a black frame. His hair was white, but there was not much of it. I remember him being very tall, and fairly thin. He always wore a crisp, white doctor coat with various torture devices in the pockets.
When I was born, a few years after Kathy and Tom’s diagnosis, I was immediately tested for cystic fibrosis, and much to my parents’ dismay, they learned that I would be joining the group for the frequent drives to Omaha to visit Gordon Gibbs. These drives were awful. First, three hours to a tiny child is a long time in a car. It was especially a long time in this car, with suffocating air heavy and dense with worry and despair. I remember my siblings and I counting the number of giant semi trucks with a huge red and green CF emblem on each side which meant “Consolidated Freightways,” a now defunct freight service. To us, it meant cystic fibrosis…that thing that was going to kill us. The trip to Omaha was via Interstate 80, which crosses the country and seemed to contain every single CF semi truck ever made.
My mother would be in the front passenger seat with my father driving. I would sit in back between my big brother and sister, all three of us dreading the arrival at our destination. I remember very little talking. My father would occasionally try to comfort my mother, who could not hide her fear. The visit never brought with it good news. This became more and more apparent with each trip. Sometimes we would drive home missing either Kathy or Tom, when Dr. Gibbs decided he or she needed to stay in the hospital for antibiotic treatment. Those were the worst of the drives. Usually, it was Kathy who had to stay. She was always at the greatest risk, for some reason. I never had to stay.
Dr. Gibbs’ office was in the basement of the University of Nebraska Medical Center. Once we parked the car, we would head into the building and enter into what I think must have been the oldest elevator in existence and slowly descend to the bowels of the building. It was one of the elevators that had two barriers to entrance or exit, a regular door as well as a thick, iron gate. It was almost as if the Universe was saying, “Are you sure you want to leave where you are right now?” My answer was universally NO.
Once you passed the gate and door of the elevator, the long, dark and dank hallway offered up many more iron gates. It was like a maze of hallways and somehow my parents always knew which way to turn. I couldn’t keep my eyes off of the gates. I just didn’t understand what they were for? Why did there need to be a heavy set of rolling iron bars dividing one section of a hallway from the next? And why did it smell so horrible?
When we came to the door with a plaque that said Cystic Fibrosis on it, my heart would fall into my stomach and tears would appear in my eyes because I knew what was going to happen. I hated this place with every fiber of my being. These were the days before a blood test could determine how well a pancreas was functioning. This was a time when that could be known only by measuring the fat content of stool. And since I could not poop on command (and still can’t, for that matter), this meant that when it was my turn to be examined, Dr. Gibbs would snap on a latex glove and insert his very large index finger into my tiny anus to collect a sample. It was mortifying.
If that wasn’t bad enough, the very last procedure I had to tolerate Every! Single! Time! was the ‘throat culture.’ Just as I could not magically produce poop for him, I also could not produce sputum. So the very last thing he would do was shove a long stick with cotton at the end deep into my throat, causing me to choke and nearly throw up. This made him happy because it meant he got his sample as I spewed and coughed and gagged.
Can you see why I hated him? And this was even before I learned about the monkeys. Dr. Gibbs was researching cystic fibrosis with the hope of helping kids like me. But the sad fact was that he did his research on living, breathing monkeys. At least, this is what they told me. So probably some administrator at the Medical Center thought that it would be efficient to have the very infrequently visited cystic fibrosis clinic on the same level, in the same hallway, as the primate lab where Dr. Gibbs kept his monkeys. Hence, the gates…and probably the smell. Or at least, this is the connection my little brain made when I learned about the monkeys in the lab. I envisioned that the gates were there to automatically slam shut in case the monkeys got loose.
Usually, I would entertain myself on the ride home with a three hour fantasy involving setting all of the monkeys free and hiding all of Dr. Gibbs’ tools of torture. If all of us were present, it was usually a much happier drive home for me at least. I could breathe easy until the next trip, and I could leave the worrying to my parents, who were so much better at it than I was.