Kage Baker told me – at some point during our long, mad scramble through the health care system -that the hardest part of her year of illness was just getting to where she needed to be. Some of that was literal – her surgery was in San Francisco, 300 miles from our home. They don’t open Ronald McDonald House to middle aged ladies, so it was only through the extraordinary kindness of friends (you know who you are, Steve and Carol!) that we didn’t end up living in our PT Cruiser during that part.
Some of it was that the more she needed to get done, the less strength she had to do it. The tests, the endless paperwork, the daily therapies – they all took time and coordination, and as she got weaker, the less she had to bring to those tasks. Quite aside from the fact that she never did learn to drive … the waves of red tape just rose up over her like the Red Sea collapsing in Moses’ wake, and Kage said she felt like Pharoah’s unhappy army.
Coping with all this crap was my job. I am proud to say I managed it pretty well. And at this point, I am also thankful I learned what to do before I needed those tricks personally. It’s due to my earlier practice that I knew how to hurry the establishment along, and how to avoid getting ground up in the slow, toothy wheels of bureaucracy and paperwork.
But I still had to fill out forms, sign my name a hundred times, and walk all over the considerable area of Cedars-Sinai for tests. It’s a lovely place, full of people who are not only competent but compassionate – but it’s also long and tall and deep, and some parts of the campus are only marginally connected to the other parts. When you need to have blood work, EKGs and a chest X-ray all in one day, you have to cover a lot of ground.
That’s not something I do very well at the moment. I’m slow, and stiff, and after an appallingly brief time spent walking or standing, I’m pretty uncomfortable. By the time I reached the last test and verified my name, DOB and address for the 10th time – and since they’d tagged me with a bracelet with all that on it at the start, why did I have to keep reciting it? – my friendly smile was more a baring of teeth. I must commend the staff of Cedars-Sinai for apparently recognizing the syndrome, and doing their very best to accommodate my fatigue and discomfort.
And when I wasn’t cursing my way down some long corridor decorated by someone with a fetish for mauve and turquoise, I thanked Kage for teaching me both patience and determination. Most of the time I had a shadow dialogue in my head, telling her all about my current trials and tribulations, and sharing the weird bits with her.
Those omnipresent aquariums, for instance … there are even more of them at Cedars-Sinai than I had originally thought. Significant portions of the walls are composed solely of glass and fish; I shudder to imagine a temblor in there. And the waiting room aquarium by the hematology lab is back down to a mere two grey fish, too. I don’t know what those grey guys are, but they clearly kick ass. Nothing else survives in their tank.
I had to make a special side trip today, too, to go and sign a new release for my surgeon. The State of California, in its infinite wisdom, requires that before a doctor can do anything to your reproductive organs, you have to sign a release stating you understand that the effects are permanent. So I had to reassure the State today that I realized the removal of my uterus will leave me unable to bear children. Never mind the fact that I am 58, that menopause is years behind me, and that the freaking Geiger Alien has taken over my baby-making equipment: Sacramento can now rest easy.
I don’t know quite what they are smoking up there in the Delta. But if they’d just legalize and sell it, our budget woes would be over …
Anyway, it was a long, hard, annoying day. But they have my blood, my heart trace, my chest transparency; they have all my vital statistics (I gave ’em three dozen times) even though no one can actually pronounce my name so how sure are they that I am me? I am really looking forward to next Monday. I won’t have to drive, I won’t have to park, and I won’t have to walk anywhere. I can recline on a gurney and be transported like a Roman matron in a palanquin, serene and horizontal.
One of the other things I’ve learned in how nice it is to lie down. It really gives you something to happily anticipate. And you gotta take your pleasures where you can.