There’s a famous one-line quote that many doctors have heard in medical school that refers to looking for a diagnosis that’s more common than not. “If you hear hoofbeats, remember to think of horses and not of zebras.” The problem is that medically speaking… not everyone is a horse.
Six months after I got married, my husband and I sat down to a large cheese pizza and a movie. We did this little routine every Saturday night to ensure that we made time for one another as much as possible. Rob was stationed in South Korea, and we could never be sure when he would be shipped off for training or getting ready for war.
We lived in a two-bedroom, two-bathroom flat a few streets over from the Army base with a rice paddy in our back yard. It was our first home together and the minimum requirement that we would be living there (through military contract) lasted at least a year, but possibly longer. None of that mattered so long as we could be together… until the night that changed everything.
I was positive that I had the stomach flu. By the time the movie ended, I wasn’t feeling so hot. My stomach churned, my face turned pale, and I made several trips to the bathroom to get sick. I had hope within that moment that everything would work itself out. That I would be feeling better again in a couple days.
That’s the funny thing about hope, in the beginning you have a lot of it. Yet as time wears on, it becomes the most dangerous emotion that someone who’s chronically ill can have. When days of being sick turn into weeks, and weeks turn into months… with no end in sight. You begin to lose it. You bargain for your life. Have another hospital stay, see another doctor. Sit down in your 100th exam room and hope has dwindled until there’s nothing left.
When you’re young you start out with the notion that all doctors are smart. You feel as if the world is full of incredible people, and that someone somewhere will know how to fix you. You move on to hoping that there’s a pill to take or a treatment to try that will give you a better quality of life. Yet you settle on symptom management. The ability to have more good days than bad ones… or just any good days at all.
My husband watched me waste away from being vibrantly healthy to counting the bones in my body just from looking at me. I weighed 64 lbs. Just a few pounds shy of the weight my almost eight-year-old boy is now. My body punished me for every morsel of food or liquid that passed my lips, and I was told more than once that I was probably going to die. I was racked with abdominal pain, and I couldn’t prevent myself from throwing up repeatedly no matter how much I begged to make it stop.
I reached a point where I longed for death. It took great effort to get dressed, to brush my hair, or just to walk from one room into the next. Upon trying to make my way to the hospital on base (The TMC), I would sit on the curb and lean away from traffic to avoid getting hit by cars when I passed out. I was transferred to a better hospital by ambulance, where doctors discovered that I had a kidney disease… which had nothing to do with regaining my able to eat.
I went from having a needle phobia and being terrified of hospitals to showing up to medical exams for regular testing. I was forced into being dependent by allowing my husband to help wash my hair when I couldn’t do it myself. Rob spoon fed me broth or soup when my hands shook too much out of weakness from malnutrition. When he couldn’t be there, and we were back in the states (two years later) my mom helped take care of me.
All the while my husband was forced to continue going on training missions that kept him away from home for weeks at a time. He would stock the refrigerator and pray that I would still be alive by the time he came back home again. I was unrecognizable. He didn’t handle the new adjustment to my health very well. Alcoholism ran in his family, and he relied heavily on that to help him cope. Which began another kind of sickness that we had to fight to get through together.
I spent nine years of my life more bedridden than not. I fought to avoid feeding tubes and TPN, I tried every medical miracle I could find (sometimes at the detriment to my body and peace of mind) because deep-down I wanted to live. I wanted a full life on my terms without lasting side effects from daily medications or being hooked up to machines that would barely help me survive.
Six months of testing at Mayo Clinic and I was diagnosed with a little-known illness called Gastroparesis. Which is the shortened medical term for stomach paralysis. To this day episodes of what I call GP strike fear and anxiety within my heart. It never fully goes away. It can become more manageable (like it did for me) but for the millions of friends I’ve made over the years through support groups… Gastroparesis doesn’t always get better with time (or in my case… with pregnancy). It can get so much worse.
I have a long list of zebra-like symptoms beyond Gastroparesis. Things that happen to me that can be explained under other diagnoses in which I was given, and things that can’t. I’ve had more than one near death experience and knowing my medical history… I’m sure there will be more. My husband and I have spent thousands of dollars trying to figure everything out only to walk away with less money in our pockets, and no answers to show for it.
One of my favorite primary care physicians I’ve ever had once told me that my medical history was so interesting, he took it to bed with him as reading material. While under his care, I contracted a rare parasite that no one in my area had experienced in almost 45 years. Upon returning to his office for a follow up exam, he shook his head, and we laughed over the absurdity of it together.
When new doctors are forced into my life because physicians retire or move away, I am coaxed into relaying the bizarre sagas to fresh faces. The jaw-dropping reaction of disbelief is one I’m all-too familiar with. I can tell within the first five minutes of conversation whether that specific doctor can handle my case or not.
Farm life and motherhood are my reasons for getting out of bed in the morning. There are moments when I am so overcome with pain that it takes everything within me to do the most basic tasks. My ability to run our farm, be a professional photographer, write, and build a small business is accomplished not because I’m young or feeling my best, but because I am resilient.