Diagnosis: You’re F*cked

It’s hard to know when it started. Subtle changes can be hard to notice. Looking back, maybe it was when you started coughing when taking sips of water or all of a sudden couldn’t open a bottle. You’ve always been sprightly, capable of almost anything your petite stature could take on: New York, San Francisco, London. You threw yourself into the whirlpool of life, one adventure at a time. 

You didn’t realize you were on a new adventure. That day last July, when suddenly, your hands weren’t working. You couldn’t turn the key in your car. Your electric toothbrush refused to turn off. It must have been faulty. Not you. Opening milk bottles became impossible. Tearing open a letter? Forget it. 

There must be a reason, you thought. Your intuition told you not to ignore it.

“It could be an impinged nerve or Parsonage-Turner syndrome. Let’s order an MRI and an EMG,” the mediocre doctor said. You looked at him, sizing him up—calm, efficient, entitled. Not the type you’d marry—such uptightness. The kind who leaves work at 5:00 p.m. sharp, gets home, takes off his shoes on a leather bench, and switches to his indoor slippers that have never set foot in the great outdoors. No adventure for those cozy foot coverings. Then he goes to the wine cabinet, pours himself a glass, and listens to calming, classical music. Everything with him is efficient.

The MRI was unremarkable. You began to suspect this was all in your head. Your EMG was unexpectedly painful, with electric zaps on your elbows making you wince. It won’t show anything, you thought. 

You couldn’t believe when the doctor mentioned you had “diffuse findings” and pointed out those little twitches: fasciculations, she said. It would take you weeks to spell it correctly, let alone remember its name. She flicked your middle finger, and your thumb did a little dance.

“That’s a Hoffman sign. Your thumb shouldn’t move,” the doctor said. She was warm and friendly, with long, straight, auburn hair put up in a twist. “You need a referral to a neuromuscular doctor. You have issues everywhere, which suggests this is something coming from your brain or spinal cord.”

You always thought your brain was odd, perhaps tap-dancing aliens with typewriters, but you never expected this. When people used to say to you, It’s all in your head, you took that as a mental problem—not a brain problem.

“This could be a sign of a motor neuron disease, but I don’t know how your EDS or autoimmunity factors in,” she said. She told you she’d submit the referral and work on her report. You had a knot in your stomach, and your mind started to race, but the devil on your shoulder said, Be positive.

The following week, you twiddled your thumbs, you bit your lip, you ate coffee ice cream, and convinced yourself it must be something else. Mind over matter. Then the report came. It was pretty meaningless to you, but Chat GPT told you it looked pretty okay.

“Well, I can’t wait to see the specialist and get to the bottom of this,” you said. You always thought something was underlying but assumed it was depression or ADHD.

You were nervous heading into the follow-up with the mediocre doctor who left at 5:00 on the dot. “My geneticist says it’s EDS,” you told him, but he dismissed it. You and the mediocre doctor engaged in friendly conversation, but he seemed clueless, like he didn’t know anything beyond what he learned in medical school.

You felt at ease despite knowing that not just anyone gets a referral to a neuromuscular specialist. You hit the big time now.

“If you can’t get in with the top-notch specialist in the next month or so, I can ask my office mate if she can pull some strings at the local yokel hospital, her husband works there, but I can’t make any promises.” He smiled in his jovial, mediocre way. You noticed his shirt was iron-pressed flat without a crease. You could never get an iron to work that well. Must be the settings, you suggested. 

You had the biggest eye roll inside your brain, smiling back at the mediocre doctor with the well-pressed shirt.

“Well, since this is out of my area of expertise, I see no reason to see you again,” he said, his thin lips producing a crooked smile. His eyes must have been brown, but you couldn’t recall, and you didn’t care. “I’ll turn you back to your PCP, and she can coordinate with you.” And just like that, the visit was over. You didn’t learn anything new. It felt like time wasted, like surfing the web. 

You left the office, and he returned to his shared office, where he didn’t mention the referral to his officemate. He efficiently dictated his note without checking for typos and errors and moved on to room 27 for the next patient he’d provide mediocre care to, with his crooked smile, possibly brown eyes, and perfectly pressed shirt.

You headed back home and asked me to open the pickles. You were craving salt. You carried on with your day, hoping to get in with a specialist soon to get some answers. Some have waiting lists of 18 months. What the hell is going on with the medical field? 15-minute appointments. Time to go. Next.

Then your phone lit up—a new letter from the mediocre doctor. You logged into the portal and began to read his note. You notice the grammatical errors and have to look up certain terms. Then—you screamed. “No!” 

You screamed so loud the neighbors complained. Don’t mind them—you deserved that scream. You weren’t sure what to say out loud, so in your mind, you shot missiles: I’m going to die. I can’t live in my house. My kids, my husband—who will run things? You tried to picture yourself in a different light, but the only light cast was from the mediocre doctor—who, in brown loafers, appeared on your computer screen—and you processed this news alone. You cried; buckets and rivers. You screamed like a colicky baby, or a red fox, or a sonic device. You threw things. The way you did when you were a child having a tantrum because nobody would listen to you. I understand; your pain is real.

How could this be? This was never in my stars. Why did it land here? Maybe a meteor destroyed your star. I’m sorry for the leftovers. This new star is dirty. You questioned your mistakes: Too many drugs drowning out your teenagedom? Thyroid meds failing, causing your TSH to hit 354? Maybe it was your negative attitude, but you insisted you were a realist. 

“If it’s not genetic, then it must be something I did myself,” you said as your face tightened and twisted, as quiet tears streamed down your face. But you can’t think that way. That’s demonstrative, and it won’t do you any good, but you insist it must have been something you did. I held you tight; you needed that.

To be continued…