I’m sorry, I’m not accepting any new diseases right now. You might try again next year…

September 5th, 2012 by EJB

Six months ago, learning I had a spot of skin cancer on my arm, I freaked. More than freaked: I was absolutely outraged. How could this happen? Why me? How could this happen to me?

Never mind that I’ve been expecting skin cancer’s arrival most of my life. Whiter than white, that’s my gene pool. Skin cancer’s more common in my extended family than healthy relationships. My mom fought an ugly battle with it all the way to melanoma’s threshold. It would’ve won if ovarian cancer hadn’t gotten to her first. My sister has almost no melanin in her skin. Ever the outdoors-woman, her skin goes from white to red to white again, never getting even getting close to beige. Both of us have had solar keratoses burned off our faces and necks for years. And in case we missed the point, our grandmother’s maiden name – she was born on the West Coast of Ireland – roughly translates from the Gaelic to "the tall pasty people".

Add to the genetics the fistfuls of meds I take to keep my borrowed liver from rejecting, each with a Day-Glo warning label screaming, “stay out of the sun!” plus regular reminders from the dermatologists that it’s when I get skin cancer not if, and a spot of basal cell carcinoma should come as no surprise to me at all.

It didn’t. Except it did.

How could I have a new disease? I moaned. Wasn’t liver cancer, a transplant, a weird and rare hepatitis outbreak, two hernia operations, the unexpected arrival of two autoimmune diseases –  another gift from the family genes – wasn’t that enough?

Yes yes. Stupid question. But for two days stupid questions were the only ones I could ask, intelligent ones being drowned out by  the moans and whines of “oh poor me, oh poor Eddie”.

A week later, back to my normal self (and what the hell might that be?) I returned to the dermatologist, had the half-dime-sized spot burned off my arm, hurried off to yoga, grabbed lunch, picked up Otto, and drove to McLaren Park where we went on a long walk, me taking pictures and Otto sniffing and peeing. Shock and anger and whining? Over a dot of skin cancer? Please. I’d assimilated my latest disease.

Yet the question does creep into my mind: how much is enough? How much is too much? How much can my body take? More to the point, how much can my mind?

Last week I broke two ribs. Nobody can figure out how or why. I did not fall, I had no accident, did not black out. I was shocked and it hurt like hell, but no outrage broke through, no self pity. The three weeks before that were devoted to the misery of a hideous sinus infection which scared the hell out of me when it moved into my eyes (!) puffing them out until I became a scary-movie version of the Pillsbury dough boy. Then there were miserable reactions to the antibiotic used to knock the infection out. I ended last week with an MRI of my liver, ordered by the docs to see if there’s something they can blame for rising liver enzyme counts and began this one by getting an overdue blood draw on Labor Day.

I forget how awful this all is until I see it reflected in others.

The friend who drove me to the MRI appointment – and who has ferried me about the last week because of the awesomely painful broken ribs – asked why I was having the scan. I think he assumed it was for the ribs, but you can never be sure with me. I told him about my problematic no-longer-new liver and then, in his eyes, I saw how heavy a burden all this is, how impossible it is to imagine living my life as one ailment piles on top of another over and again until there seems no human way to cope with it all. I hate seeing that look in others. I dread the times I feel the burden myself.

Poor Eddie didn’t freak out over the skin cancer. He panicked. Panicked wondering how I could possibly cope with one more problem.

I expend more energy fighting to keep my mind and emotions in some sort of balance than I do trying to keep my deteriorating body intact. I suspect this is essential, the only way I can stay alive.

Making procedural lemonade

July 21st, 2012 by EJB

Sitting in the dermatologists waiting room yesterday, I saw two women exit The exam area. The first one looked burdened, a heavy frown on her face. The second was more relaxed, lost in thought.

"Did you get all that?" said the first to the second. "What the procedure entails, what you have to do to get ready?" I was surprised. If I’d had to pick one for having a procedure, I would’ve picked her. The second woman looked up with a smile.

"No problem,” she said brightly. “Got it all." Her smile turned into a grin. "Looks like I’m going to have to hire someone to clean my house!"

Her friend  was speechless. Whatever she’d been expecting it wasn’t that.

With a "Let’s go!" the woman getting the procedure led her friend out of the office.

By this time I shared number two’s grin. No doubt: whatever the procedure was, number two was going to get through it just fine.

ObamaCare’s little secret (or: why Republicans hate Pelosi so much)

July 6th, 2012 by EJB

Well well. Seems that there’s a surprise in ObamaCare for our wonderful elected representatives, one that explains why Boehner, Cantor and Rubio and McConnell et al are frothing at the bit about it: It applies to them!

Yes! Our Fearless Leaders in D.C. are required by the Affordable Care Act, the one recently upheld against all odds by our non-partisan (sic) Supreme Court, required to get their insurance from the same pool that the rest of us do.

Here’s the relevant section. You’ll find Section 1312, aka "Consumer Choice" on page 81 of the law’s text .(that’s the text’s page number, not the PDF’s.)

(D) MEMBERS OF CONGRESS IN THE EXCHANGE.—

(i) REQUIREMENT.—Notwithstanding any other provision of law, after the effective date of this subtitle, the only health plans that the Federal Government may make available to Members of Congress and congressional staff with respect to their service as a Member of Congress or congressional staff shall be health plans that are—

(I) created under this Act (or an amendment made by this Act); or

(II) offered through an Exchange established under this Act (or an amendment made by this Act).

(ii) DEFINITIONS.—In this section:

(I) MEMBER OF CONGRESS.—The term ‘‘Member of Congress’’ means any member of the House of Representatives or the Senate.

(II) CONGRESSIONAL STAFF.—The term ‘‘congressional staff’’ means all full-time and part-time employees employed by the official office of a Member of Congress, whether in Washington, DC or outside of Washington, DC.

Alone among life on this earth…

July 4th, 2012 by EJB

…we are aware of the time we have lost and the time we have left. This is the source of our anger and our cruelty.

Repairs underway

April 10th, 2012 by Ed

I finally got back to writing for this blog after a hiatus both mental and physical, only to find the latest WordPress upgrades had tossed  finding and opening posts somewhere to the east of possible. I’m working on repairs now – all the old posts should now be accessible again – and will be adding more forthwith.

Thanks for your patience. More words coming soon.

Ed

 

Familiarity breeds… Boredom? Anxiety? Disdain? How about night terrors?

April 16th, 2011 by Ed

A shadowy figure broke into my house, into my room, into my dreams. In that way dreams have of telling us what’s going on I knew he was a burglar but he didn’t seem interested in burgling anything. All he did was cut me. Over and over he cut me: slices to my ears, stabs on my face, cuts to my arms and hands… painful small cuts, the kind that, added up to 10,000, cause death. Oh, those cuts. They hurt. I screamed.

The scream woke me up. I shuddered, shook my head at the horror of the nightmare and fell back into sleep – and  back into the dream.

The cutting man was still there. Not a gloater, he was nothing like Hollywood Evil. Just a man with a grim task to do. His knife looked like a scalpel, blood ran from my cuts. Why was he doing this? Why didn’t I fight back? If he was the thief the dream insisted he was, why didn’t he just take something and go? Read the rest of this entry »

I could never go through what you’re going through…”

January 10th, 2011 by Ed

I’ve heard this comment from friends and family and even strangers for five years now and it always makes me uncomfortable. Something’s off with it; somehow the sentiment just doesn’t ring true.

Thanks to Thomas Mann’s The Magic Mountain – I’m carrying out my vow to re-read this magnificent and complicated book – I’m learning why the remark causes such unease. I think I understand how the words do not say what they are meant to say.

It’s meant to be a kindness, even a salute. “I don’t know how you do it! I couldn’t,” someone will say to those of us fighting chronic illness or life-or-death health battles. Our treatments, our pain, the unending doctor visits and hospitalizations – they seem unendurable, impossible to someone looking at it all from the healthy “outside”. Read the rest of this entry »

Disasters that come from the mouth

January 9th, 2011 by Ed

The guy with the gun pulled the trigger in Tucson. But the constant vitriol of hate and demonization by political “leaders” and others helped set the stage.

In 1998, there was a flurry of anti-gay hate speech. Religious groups, sports figures and politicians fell over each other in their eagerness to get in front of a camera and denounce homosexuals, all because President Clinton had appointed James Hormel as ambassador to Luxembourg. Hormel’s sin was being gay.

In June of that year, Trent Lott, then Senate Majority Leader, happily pandered to his base by upping the volume of venom considerably, very publicly comparing gays to alcoholics, sex addicts and kleptomaniacs, characterizing gays as sinners and a “problem to be solved.” Read the rest of this entry »

Chronic choices

December 8th, 2010 by Ed

I’m hanging steady these days. No hospital overnights, few “procedures”, no new diseases to compliment the half-dozen or so I’ve already collected. People tell me I look better. Yoga has strengthened my body and, it seems, the remaining bits of my mind. Life is good, then, as good as it has been for a while.

So I’m celebrating, right? Well… yes and no. Its not just downward-facing-dog poses, attentive doctors and luck that’s improved things. I made a choice – one of those choices where, to gain one thing you must sacrifice another. I’m doing it solo because no doctor would ever agree.

I’ve been around a lot of sick people and one of the most stubborn rules of thumb I’ve observed is this: Read the rest of this entry »

A Fake Society for a Fake World

November 4th, 2010 by Ed

From Hollywood to Oprah, seems like is taking a swipe at Mark Zuckerberg and his thrown-together monster, Facebook. I got burned by the two-faced beast too…

Every geek, techie and IT pro I know has exactly the same opinion of Facebook: Don’t. Go. There. Ever. Facebook is a giant con, they all say, a tentacled medusa crafted to steal personal information, parse it into marketable chunks for sale to the highest bidder. Privacy, as we have been informed by Zuckie, is dead.

I adhere – or did – to the no-Facebook ethic. It wasn’t hard: 25 years ago with a single PC and a database program now known only to aging geeks I extracted personal info from tiny, innocuous client lists that made my conscience burn. I know well what can be – is being – done with the terabytes of personal info that everyone is shoveling onto the ‘net.

That’s not the only thing about Facebook that makes me queasy. A virtual social network? Posting life’s little conceits and embarrassments on some public wall? Friending as a verb? Unfriending? How very high school. Ugh. My dislike is not unique: “I hate the very idea of it,” is a critique I’ve heard and read many times.

Read the rest of this entry »