Tuesday, April 28, 2009

August Day

After I was 15 or so, I stopped crying.

Well, I stopped crying for any reason other than extreme frustration and anger - usually brought on by exhaustion and stress, and usually aimed (oh I am so sorry) at colleagues, or at least near them. I had to have a shell in order to set some semblance of boundaries to my raging emotions. (Yeah, give steroids to a Scorpio sun/Cancer moon and watch how that works out for ya...) It was a way to cope, to live either in denial or stoicism or not wanting to bother others or... maybe just to avoid the rest of grieving (for what? lost opportunity? lost adolescence? the way I perceived my family had failed me? just being a teenager?).

I made it that way for about 16 years. I didn't cry again until 2002.

I had been remarkably 'healthy' through my 20s, had gone onto another immuno-suppressive drug and had been off steroids for nearly 10 years, and had thoroughly enjoyed grad school, getting out on my own, falling in love, getting married, and generally being the hedonist that lurks inside my soul. My GI (gastroenterologist, not military dude) even came close to 'firing' me a couple of times because there were few indications of progression of the disease or decompensation of my liver.

But about the time I turned 3o my bloodtests started to show the chronic indicators of liver disease: nothing but nothing could elevate my blood proteins, I was developing esophogeal varices, my blood pressure was too high, and my bilirubin counts were rising above normal. Dr. W broached the topic of referring me to the UW to meet with the tx clinic, and an appointment was made.

I made the unfortunate decision to invite my then-husband along to the UW for the visit, the first time he'd been involved in my health care in any way. It was an abysmally wretched (is that redundant? I will leave it because it was truly terribly awful) experience best saved for telling later.

The summer of 2002 sent me through the workup process for the tx waiting list, what seemed like endless tests and ever more prescriptions. I was not reacting well to any of it, and on top of that I felt pretty crappy all the time. Counseling helped a little, but complex knots don't unravel in the space of a few months.

August rolled around. I had been retaining water, and one morning I got ready for work and none of my clothes -- really, none, not even my fat pants or my elastic-waist skirts -- fit. I couldn't get my feet in my shoes and I felt miserable. Not only because of all the fluid retention, but anyone who knows me knows that I am a little (ha! understatement!) neurotic about clothes, how they feel on me, getting dressed for work in the morning, things not going as planned, getting up in the morning, worrying about freaky things happening with my body... so I wigged out and called in sick, and called Dr. W.

Turns out I had pitting edema. That's when you retain fluid to such an extent that when you, say, poke it, there's a dent left behind that takes up to a minute to un-dent. It's the kind of thing a 10 year old boy would think was totally awesome, right after belching and farts (sorry to be so stereotypical; a girl might think so too). For an adult, especially the aforementioned wiggy adult, it was very, very gross.

Dr. W only had to see me for about 8 minutes (typical of most clinicians, his appointments were 15 minutes long...) and was prescribing two more drugs for me, a balance of diuretics. At some point during the side-effects discussion he made eye contact with me. I swear I turned 13 again at that moment, my eyes welled up and my bottom lip popped out and started to tremble.

The man, bless his uber-chic urban heart, tapped into his fatherhood and husbandhood [an aside: I adore his wife and daughters, and to this day he is still the only person besides my dad who can call me 'kiddo' without getting sneered at] and said "get your butt in my office now."

He sat me down opposite his desk, and I crawled into my 13-cum-32 year old self. He looked me straight in the eyes and said for the first time ever the words no one had ever said to me before.

"Listen," he said. "This sucks. This sucks a lot because you never did anything to deserve this, and you haven't done anything to make it worse. And your best hope is to stay as strong as you already are and work at this and survive. I believe you can do that."

And the floodgates opened.

Now - and all the criticism and teasing be damned - I cry. Fully and unabashedly when I am happy, complimented, sad, tired, mad, touched. At work (and now I'm not so sorry), at home, watching EVERY movie I've seen, at Hallmark ads (cliche but so true), when friends are in pain, when dogs are in danger, on vacation (I am sorry about that, Martin!), and when I stub my toe. It's fabulous. I hope I never grow out of it.

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