unDIAGNOSED. Randy Beal
I said “No, I speak Spanish. Do I need to speak French?”
He said, “No.”
The other was an out-of-the blue work question. Our family business was in railroad supplies and his question was about a specific product.
“Alco 16’s?” he asked.
“Shipping Monday,” was my simple reply. It seemed to soothe his curiosity.
My mom stayed up with dad into the early morning of June 17th. Throughout the night, he slept fitfully, complaining of the heat, and began removing his clothing little by little. The last thing he removed was his watch, as if to say, I won’t be bound by this anymore. My mom prayed a prayer of release before she drifted off to sleep. Dad died around 4 a.m.
Mom woke up shortly after and realized Dad was gone. She ran to my room, in hysterics, screaming, “He’s dead, he’s dead, he’s dead!” and did a flying leap on top of me in my bed. Later we joked about her amateur-wrestling-inspired belly flop, but we were all too stunned by his loss to see any humor in it at the time. I called my sister a short while later. I could not bring myself to enter the room he had died in nor to look at him.
The day of the funeral came and I had prepared something to say at the services. When the time came, I just couldn’t do it. This book is another way to say some of the things that were too difficult to say at the time, to say goodbye. I hope you’re proud of me, Dad.
After the service, everyone was heading back to our house and a large group of cars followed behind me. I didn’t really know my way home from the church and probably couldn’t have focused on driving even if I did. I detoured the procession down a long gravel-road 20 minutes out of the way before we made it safely home. I kept turning down unfamiliar streets, hoping I would recognize something, but the landscape seemed alien. Eventually the last road left was the road home, which was fitting.
After my father’s death came my downward spiral, physically and emotionally. Although I had recently reaffirmed my faith in God, I just truly didn’t know how to handle the pain. It sounds cliché to say I turned to alcohol, but I did. Drinking wasn’t a new experience for me; I had partied in high-school and occasionally got “wasted” when I went out. But now it became a problem. It’s not an exaggeration to say I got drunk every night of the week. I would hide the bottles from my mom under the bed. In reality, I was hiding my anger, hurt, and pain in the temporary mental numbness that alcohol provides. I’m not proud of this, but I no longer have any reason to hide it. It was a very real part of my journey for a long time and another hurdle I would have to learn to face and overcome.
The Colonel
The numbness moved from my feet up to my knees. This got my attention. I finally got scared and went to the doctor. What if it traveled upwards to my heart? This was the beginning of an ongoing cycle of medical investigation into my condition: opinions and second opinions, specialists, theories, conjecture, research, all of which would continue for several years.
The first place I went was to a chiropractor. He took x-rays and performed a generalist exam. He determined it was more than a back problem and recommended I see a medical doctor. My family doctor determined it was something neurological and recommended a specialist. The specialist determined it was just a virus that would work its way out. He put me on medication, but I saw no results. I swore off doctors for awhile in frustration.
Around this time I started to have some difficulty walking—nothing too major, but I had to think about every step I took. I decided it was time to head back to the family doctor. This time he took a little more time assessing my case. In our conversation I mentioned the African gentleman who had suggested that my symptoms sounded like African Sleeping Sickness (which I’ll abbreviate to ASS just to make you squirm). Curious, he busted out a medical journal to look it up. I really didn’t think ASS was a real disease. I mean, doesn’t it sound like something made up to scare American travelers? But it was real, and my symptoms matched quite a few of those in the journal. The journal said to call the Centers for Disease Control for treatment. Without hesitation, he called the CDC to find out what to do. They informed him of the tests to confirm a patient has ASS. Our best test option was a spinal tap, not a prospect I relished.
I scheduled an appointment for a spinal tap consult with a neurologist, an older, more ‘seasoned’ gentleman. Indeed, at a first glance of him, I could swear he was Colonel Sanders of Kentucky Fried Chicken fame. Heck, at 2nd and 3rd glance, too. He was the spitting and finger-licking image of his chickenly counterpart. It’s a little hard to focus on a serious medical interview when you’re constantly thinking in terms of “original recipe” vs. “extra crispy.” To this day, I still call him “the Colonel.”
At the end of the appointment, he requested I get an MRI of my brain. He told me what this entailed and I immediately started to hyperventilate. Allow me to introduce you to another of my hang-ups: I am extremely claustrophobic. The thought of lying down in a very small tube for an hour or so didn’t sit well with me. He recommended an open MRI as a more appropriate option for patients like me. As it turned out, the MRI was not that bad. It was open on all sides, except for a flat rectangular apparatus I had to lie under. Other than being slightly conscious of how similar this might be to a chicken breast lying under one of the Colonel’s heat lamps, I hardly felt any claustrophobic anxiety. The spinal tap was administered as an outpatient procedure at the local hospital. Colonel Doctor entered the room with his implements of torture in hand. He talked me through what was going to happen, but all I heard were panic phrases like “gigantic needle” and “stabbing pain.” He started with multiple shots around my back, numbing up the area around my spine. He then attempted to insert the needle. Once. Twice. Third time was the charm.
The moment the needle entered my spine, I immediately broke out into a horrible sweat and nearly passed out. Once I got my bearings and started to feel better, he let me know that if he hadn’t succeeded that third time, he would have had to get the BIG needle out. Now I don’t know about you, but I pictured an extraordinarily large needle you might see a cartoon doctor use. Wow, I dodged a bullet there. That was the worst pain I had ever felt in my life. If you can avoid getting a spinal tap it would be a wise choice.
Since walking was becoming increasingly difficult, I had high hopes that these two tests would reveal the cause of my declining health and it could be speedily rectified. This hope was met by waiting and more waiting. This waiting on test results was a new experience for me, but one which would become all too familiar over the years.
My mom and I finally sat down with the Colonel to hear his diagnosis. He saw nothing too alarming or significant from either procedure, and threw out the term “transverse myelitis." I had enough of the symptoms he described to make me think this might be what I had.
Colonel Doctor gave me a prescription similar to the one the last neurologist had given me. I wasn’t too thrilled with that, but he’s the doctor, so I followed his instruction. In the meantime, I had an eye appointment. After the MRI and spinal tap, this round of testing was a breath of fresh air. The eye doctor reported definite vision problems. He inquired about my health issues and I informed him of what I knew to date. He was confident that what I was battling could not be transverse myelitis and he asked for Colonel Doctor’s contact info so he could write him a letter about this. I happily obliged and left his office feeling like I had found an advocate for my case.
In my next meeting with Colonel Doctor, he expressed some doubt around his diagnosis of TM and spoke of looking deeper into my condition. Since it was the eye doctor who first pointed this out, I left the meeting once again disillusioned with all doctors. I didn’t know what my next move should be, so I took another hiatus. During this time off from doctors, a good friend introduced me to a doctor he knew from Africa. She recommended a consult with an expert on infectious diseases and hooked me up with a university specialist. I made an exception and scheduled an appointment. I told this latest doctor about my trip to Africa and my subsequent medical history. He began his typical neurological exam by removing my shoes and socks for some tests. He noticed my webbed toes. I told him that when I got back from Africa a couple of my toes on each foot