Thursday, November 28, 2013

We are all full of the color that has not been dreamed.

Ducking out of the 8 degree weather last night into the subway-level tunnels at Mayo, Mom and I started making a "thankful for" list. At first we were kidding, but somewhere after "last nights pizza calzone" I realized how much I needed the list. In theory, Mayo is a hopeful place with a lot of answers. But it was a dark place for me and mom. Everyone was sick, all around us. We spent over 10 hours waiting on an appointment we weren't sure we'd get. Every time I passed someone underweight or tired I wanted to ask if there was hope for them, and in turn, for me. It was lonely - like you're set apart from the rest of the world because of your illness.

I joke when I say it reminds of District 13, but I really do wonder if the author of the Hunger Games ever spent any time at Mayo. It always felt like we were underground because it was too cold to venture outside and all the buildings are connected by underground tunnels. Although parts of the building are beautiful, it is still sterile. They give you a schedule of your week with a barcode on it, and every time you check in for an appointment you scan it.


But there were also good parts - like the pianos scattered throughout the hospital campus and the large windows in the waiting rooms that overlooked the city. And I left with a lot of what I'd hoped for - a doctor who is on my side and series of tests that may provide some answers.

So here's the list.
1. Doctors that are listening and aren't afraid of a case that isn't textbook. And the hope that some day soon I'll have a diagnosis that makes sense and is manageable in the long term.
2. Taking turns with mom on who the sick one is (so I don't feel so broken) and watching her shuffle down the hallway at a ridiculously slow speed, faking a cough, when it's her turn. She's always been a good actress.
3. Telling my nurse as she removes my IV that the process always makes me think of the tree in Avatar. And seeing the confused look in her eyes right before she bursts out laughing - telling me she'll think of that every time from now on.
4. Sitting down on the marble steps in the lobby Tuesday evening beside my mom, listening to a woman play the piano.
5. Scoring a consultation with a Rheumatologist after 10 hours in the waiting room.
6. My sweet nurse rubbing my hand through my entire liver biopsy - she made me feel safe in a very foreign place.
7. Looking my Rheumatologist in the eyes (who the receptionist insisted looked like Sean Connery) as he explains that none of my symptoms surprise him and yes, even without a solid diagnosis, he's confident he can put my symptoms in remission.
8. "I'm not here to give you drugs that will make you live 10 days longer, I'm here to give you a good life." - Dr. de Groen
9. Finishing the tests and appointments two days earlier than expected, and Dad's amazing skills of persuasion to change our fight plans from Saturday to Thursday to get us home for Thanksgiving.
10. Sitting around the Thanksgiving table tonight at the Brawner's house, sandwiched between my parents, with the sweet reminder that even though we aren't related, the people around me are my family. And I'm home.



3 comments:

  1. I soooooo can relate to everything you've shared, Anna. Thanks for putting it into words. So glad we're friends.

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