The secret diagnosis

(From the man behind the curtain)

My primary care doctor starting putting in referrals for me to go back to the Cleveland Clinic, and they got denied. When discussing the distressing symptoms that inspired pathologists to send my case all over the country in search of an answer, the secret, anonymous doctor behind the referrals process told my doctor that, “Kaiser is aware of this condition and fully able to treat it.”

“Really?” I wrote back, “that’s interesting. What’s it called? Are they going to share this information with the four different doctors within the system who have told me they have no earthly idea what this is and have been worried it is a fast acting skin cancer? Are they going to share it with me? Or is this diagnosis … a secret?”

The really brutal part about this is that the diagnosis that they have been worried about is a form of skin cancer that, in really rare cases, people can get after having radiation. Up until I went to Cleveland, no doctor had been able to explain my symptoms or count out this cancer. But this man behind the curtain isn’t worried.

Here is where people tell you to take a deep breath. I do that, but I also look at art. I included this picture from the Cleveland Museum of Art because — sometimes in moments of extreme absurdity, it’s important to stare at something beautiful. I find it even better if it’s something beautiful that I don’t understand. I stood in front of this painting for several minutes thinking about my life, its complexities, and everything in this world that I find impossible, and I felt more at peace.

It’s not fair to take it out on my primary care doctor. He’s a good guy, a man who is committed to my best interest. But the man behind the curtain — the one who makes coverage decisions is someone I’m not allowed to meet. And so I take out all my grumpiness on Dr. Liu, and my general surgeon, Dr. Salyer, both of whom I’ve known for years and through many trials, know how to handle me. I am the only person I know who refers to their surgeon as their BFF. They are both opposite to the man behind the curtain. They are the people who should be in charge.

Dr. Liu promises to advocate on my behalf, and I’m sure he will. Whether that will take me back to the Cleveland Clinic is hard to say. I went there and found the answers, and now, yet again, they are just beyond my grasp.

The only way to change this system is to keep talking about it. But sometimes I don’t feel like doing that, so I stare at great art that I don’t understand. Because maybe if I do it for long enough, the rest of the world will make a little more sense.

And I leave you with this:

“Into the forest I go, to lose my mind and find my soul” — John Muir