Episode 41: Down the Rabbit Hole and There are Nazis Down Here!

Readers of fiction will recognize the allusion to Watership Down in this episode's title. Watership Down, a popular book when I was in high school, is based on a completely absurd construct: A warren of bunny rabbits must fight to save its society from nasty Nazi rabbits. Believe it or not, it's a terrific read. It works. Which is more than I can say for the rabbit hole I currently find myself in.

In fact, this rabbit hole suffices as a metaphor for the utter irrationality in today's health care system. I've actually encountered Alice's Red Queen; I don't want to call her a Nazi, exactly. Or mix my allegories. Just couldn't resist the literary tie-in.

Okay, okay, enough with the figurative language.  Here's what happened, Dear Viewers, when I finally underwent the long-awaited neuromuscular examination for possible myotonic dystrophy at Johns Hopkins Medical Center. Now, to date, I've been more than pleased with my care at Hopkins, but this experience has likely destroyed my loyalty to said institution.

They'll be happy to be well rid of me anyway. Who am I but one patient, powerless against the juggernaut of Big Medicine, Inc.? One patient jacking up their costs (and their profits) with her smorgasbord of chronic disease. And now that I have Medicaid instead of Blue Cross Blue Shield, I'm doubly unimportant to the system created (but not maintained) to help me and you.

I'm a shareholder liability, that's all I am. "Let them die then, and decrease the surplus population!" Okay, okay, not yet another literary character entering this story, but I often quote Ebeneezer Scrooge at moments like this.

"Off with your head!" says Dr. Red Queen, in so many words. "And no DNA test for you--you've overstepped yourself so I don't care to relieve your mind with an easy yes-or-no answer to an at least somewhat possible reason for your years of suffering and confusion at the ways your health has failed you! So there!"

That's her reflex hammer in her hand, and she refuses to admit the medical sign it renders in her patient, lest her patient be right about something she has no business knowing about! Off with her head, and no DNA test for her . . . NEXT! I have a paycheck to collect and a lifestyle to protect and a reputation that trumps yours, so nyiehaya!

Despite this latest horrific experience (and there have been plenty more than this and the one with my son, believe it or not, in my tumble Down the Rabbit Hole), the Hopkins visit was not a complete waste.

The electromyography (EMG)--a rather uncomfortable test in which a doctor sticks needles into your muscles and records the electrical reactions--indeed revealed some myotonic abnormalities. Thus, although Dr. RQ, as I'll call her, refuses to consider my experience as valid, the machine doesn't lie. This is not over yet.

My true purpose in telling my story is that I want you, Dear Viewer, to understand how the medical system is against YOU, the patient, and how LITTLE YOU MATTER in any quest to learn what is wrong with you or a loved one. Obviously, this needs to change. 

The medical system exists to serve US--YOU and ME, the patients. We, the People. But as this diagnostic nightmare continues to demonstrate, we count very, very little in the stories of our own lives, if we believe what our doctors and other health professionals, insurers, and governments (federal, state, local) tell us. 

But we don't have to believe them. We know our bodies; we can read; we can think; we have friends and family who want to know what is wrong; we have only this one life to live, and we deserve to know what is wrong when there is something wrong. That's what the system is for, but the system too frequently fails us.