Quote of the week:

“They'd have to shoot me to get me back to Illnois."

~Abraham Lincoln upon going to WDC to become president

Saturday, December 29, 2007

OK, I'll Say it: Sweeney Todd the movie SUCKS

Upfront disclosure: I am a Sondheimophile. I even went in with low expectations of this movie. The leads are NOT singers. I like Johnny Depp. But, I'm sorry. Sweeney needs to be a booming bass voice to give it that extra 'ummffth' of forboding and sinister darkness. I thought the movie was more of a caricature--too "Bride of Frankenstein"ish. Helena Bonnam Carter goes FLAT in most of her songs! You're recording this in a studio for fuck's sake! Re-record it and mix/splice it until it's on key through the whole song! I'm so pissed that I pre-ordered the soundtrack.
Antony is some androgenous 'pretty boy', hardly a rugged seaman. But he and Toby at least had good singing voices. I'm really surprised that SS sanctioned this. Really, Stephen?! I do want more of the general public to know your work, as I think you're highly under appreciated and under-rated. But this is not the best example of showcasing your genious. I was not expecting the play to be reproduced on the screen. It would not translate well. But I expected better/more from Tim Burton.

I had a discussion with my friend who is more of a musical snob than I. He liked the movie. He made the argument that it had to be made with big name actors who were not singers, rather than great singers who were not big hollywood names or not get made. My assessment is that it should not have been made then. I can't believe all of the reviewers who have gone orgasmic with their reviews.

Thursday, December 20, 2007

Disease finally pays off! ©

Disease finally pays off! ©

Last Saturday I was part of a focus group. I was contacted a few weeks ago by the Immune Deficiency Foundation (IDF), telling me that the manufacturer of the blood product (IgG) that I get wanted to have a focus group of people who are using/receiving this product. It would last 2-3 hours, we’d get snacks while there, a box lunch to go afterwards, mileage and $150. Was I interested?! Hell, you had me at ‘snacks’! Don’t let this out though, or everyone’s gonna be clamoring to find out how they can get CVID and collect these great dividends!

The focus group was held at a company who does focus groups as it’s business, out near the airport. There were 8 (I think) of us all together. While we were waiting to be taken to “the” room, and filling out the requisite paperwork, I asked, “So, is anyone else here CVID?” All but one of us were. The other was the mother of a 7 year old with multiple ID (immune deficiency, not Infectious Diseases for my medical readers) and autoimmune disorders. IF that doesn’t give you perspective that you’ve got to be soulless. Only two of us were male. The other man was a retired teacher, who I would say was in his 60s-70s.

The experience was very good for a variety of reasons: well, obviously extra cash at the holidays is never a bad thing! But also, it brings to mind the ‘ole shoe parable’. You know, the tale that starts outs, “I complained because I had no shoes, then I met a man with no feet…” There are times when I get pissy and whiney—I know, it’s hard to imagine! Meeting others who have a similar experience or life circumstance as you, helps give one perspective. I would guess that 5 of the other 7 have it worse off than I do. One young woman has to travel to two states away every month for her infusions. It had to do with insurance, her medical provider, and where she was on the “IgG list”. She spent most of the summer in the hospital because she couldn’t get her infusions and got too sick. How whacked is that?! We’re in a major city in the U.S. with major players in the medical arena. She’s force to go to BFE every month? Who knew there was a pecking order on the IgG list—even that an IgG list exists?

The focus group was about a new program that if we registered, we would be guaranteed our monthly treatments, regardless of change in medical provider or location. Not a monetary assistance program, but access to the blood.

Another aspect that was really good was meeting others with the disorder. I have a lot of HIV friends. There is a great supportive HIV community. I have the ID that doesn’t have a built in community. This has left me feeling isolated and a feeling of being on the outside—which is a recurrent theme in my life, but that’s whole series of posts in and of itself, which I won’t delve into. I’m the square peg in the round hole, once again. I have an immune deficiency, but not the ‘right one’, I get treatment usually reserved for cancer patients, but I don’t have cancer. It’s like those tests we took as kids, where you are shown a series of objects and have to select the one that doesn’t belong with the others. I’ve always been that one that doesn’t match with the rest.

The focus group reminded me of my stint at the Rehab Institute of Chicago Chronic Pain Center. Most of my ‘pain-mate’ co-horts were in worse shape than me. Or maybe not, but their pains were different, and maybe psychologically I needed to see them as worse than mine. In retrospect, I bet they did the same thing. We were a very motley crew that one would never intentionally put together, and if one did, one would not have expected us to get along. There was me—gay boy from the farm now in the city; blue collar factory worker; upper middle class suburban retired homemaker/mother; and a street wise woman, my age (40 at the time) from the “rough side of the tracks”, who was already a grandma of one with another on the way. Less polite circles would have called here “white trailer trash”. We had a shared/common unpleasant experience—chronic pain. When you’re in absolute agony (no hyperbole here), status, class and social standing don’t mean squat. We supported and held each other up.

I remember the week I went off the last of the narcs. I was a wreck—physically, mentally, emotionally. I was in withdrawal (and didn’t know it at the time that that’s what was going on with me—that’s one thing they failed to tell me). I’d had a sleepless 3 nights in a row, not only sleepless, but totally wired and thinking I was losing my sanity (what was left of it). I walked in that morning after the third night knowing I looked like absolute shit—again—no hyperbole. J (the suburban homemaker) looked at me and said, “I’m not going to ask you how you are today, I can tell my looking at you, you’re not doing well today.” Then she stood up and outstretched her arms to give me a hug.

While loved ones can empathize with what you’re going through, only someone who’s either walked or is walking that same road truly knows the hell you are living, and what an effort it is some days to literally drag your ass out of the bed. Sometimes it’s that mis-fitted ‘motley crew that’s needed to, as Jackson Browne sings it in “Your Bright Baby Blues”, from THE PRETENDER album (one of the all time best rock albums)
: Take my hand and lead me
To the hole in your garden wall
And pull me through

©wtf/rle (with the exception of the Jackson Browne excerpt)

Tuesday, December 18, 2007

The Last Six Years of Top 10 or Read at your own Risk

If you're reading this, you've either received my holiday card and are really hard up for something to do; or you've unwittingly stumbled upon this. This is the only warning you'll receive. Stop now before you regret it! My annual “Top Ten List” has been on hiatus for the past few years (OK, since 2000). The following will explain a bit as to how I was occupying my time-or how it was being occupied unwillingly on my behalf. As you read, I think you’ll understand why this just didn’t seem to be the right fodder for the holiday update—even for my dark and maudlin personality.

The other title for this would be a take off on the David Sedaris essay from I think, his first book, "Happy Holidays to my family and; friends". Only what follows here is the truth and not fiction. And this is why you've not heard from me in over 5 years. I'll give the bullet points. Should for some twisted reason you want further detail, ask. I’ll consider expounding upon the story. I'll start the timeline a bit before 2001, as it is set-up for what follows"

Randy’s Medical Saga
May ’98 - Shoulder surgery (R shoulder); rotator cuff, acromioplasty, w/ surgeon I didn’t
like, and didn’t want. I was stuck due to an HMO

Dec ’98 - 2nd shoulder surgery, to fix the botched 1st surgery, with the surgeon I originally wanted.

Summer/Fall/Winter ’01 - a lot of pain problems, mainly running along the sciatic nerve of my L leg, resulting from bulging discs in m y spine; series of painful cortisone injections in my spine, producing no relief.

Winter/Spring ‘02 - Referred to the Chronic Pain Clinic of RIC; month long intensive outpatient program, 8 hrs/day, 5 days/week for 4 weeks, went through a bad narcotic withdrawal because they weened me off too quickly.

April '02 - I had to resign from the best job of my career after surpassing FMLA time off, and being unable to return to work.

April ’02 – Began working for the designer/general contractor who did my kitchen rehab, managing his office.

October ’02 - 1st surgery for pilonidal cysts, very protracted and painful recovery.

May '03 - Start job (.75 FTE) at Hospital System in the suburbs --minimum of 1 hour, one way commute. Third week of work, some woman backs into my brand new MINI Cooper in the parking deck of the hospital. This is an omen.

October ’03 – Exactly 1 year from the date of the 1st surgery, the cyst area starts bleeding again, the cysts have recurred, surgeon is concerned it could be cancerous as “they never recur."

I tell my boss & CEO that I am going in for serious surgery, with a protracted recovery and would like to work from home, once I’m able. The CEO replies with, “I can’t believe you’re doing this to us!”—Exemplifying the core ‘values’ and ‘beliefs’ of this great catholic healthcare institution. If getting hit in the parking garage wasn’t an omen, this sure as fuck was. This also frayed that one last strand of any religious belief systems I previously held. My new pet name for this employer is “5RH” for 5th Ring of Hell.

January ’04 - 2nd surgery for pilonidal cysts (not cancerous); recovery was even more protracted and more painful than before.

August '05 - Trained for and completed a 20 mile walk along LakeShore Drive from dusk to dawn for the American Foundation for Suicide Prevention. I raised $2,500. in pledges, and FINISHED the walk--which a was huge victory for me physically and mentally. It was the first big physically active thing I'd done since the pain episode and surgeries. I also lost some of the weight I’d gained from being sedentary for so long, repeatedly.

December ’05 - Slip on the ice, breaking my arm at the R shoulder It’s a surgical neck fracture of the humerus bone—or as the surgeon described it, “think of your upper arm as an ice cream cone, your fracture is where the ice cream meets the cone”. Fortunately, no surgery was required, but missed (another) 7 weeks of work (AND PAY).

March '06 - After another really bad bronchial infection, unable to see my MD, and see the PA at the practice, who begins to ask different questions, resulting in a battery of blood tests. I am diagnosed with a condition known as CVID-Common Variable Immune Deficiency. My body does not produce antibodies to fight off infections. It is a congenital disorder that is usually diagnosed as a child, or in early-mid 30s (which is when my bad, chronic bronchial and sinus infections started). I now go in once a month (for the rest of my life) for infusions of IgG (a blood product).

I now have an unnatural (but not irrational, imho) fear of surgeries, as it seems it takes 2 times to get it correct; and of December, as it historically has not been a kind month to me.
~end of the shitty part~

October '06 - Begin new Job - which I love. I no long work for assholes! YAY ME!

2007 was a rough year health-wise for the bronch and sinus infections. I was borderline pneumonia at one point and close to hospitalization. But comparatively to the previous 6 years, not quite as hellish. I took 4 trips this year (all work related, but was able to squeeze in some fun. NYC was a favorite. I was there the weekend of the Tony’s and being the work diligent fool that I am, I passed up on a ticket to the Tony’s with my friends Eric & Joel, who met me in NYC for the weekend.) I was able to feed my anemic Broadway fix with 6 shows: Company (FABULOUS!); Journey’s End (Incredibly and numbingly moving); Grey Gardens ( I will never forgive Christine Ebersole for backing out and sticking me with the understudy for the performance I saw the night before the awards); The Drowsy Chaperone (fun, cute show); Spring Awakening (I saw this the night AFTER it won all the Tony’s—it was a theatre experience unparalleled to anything I’ve witnessed before. The energy in that theatre was palpable! Three curtains calls and at least a 10 minute standing ovation! It compensated somewhat for Grey Gardens, but I still will never forgive Christine Ebersole; and The Fantastiks—off Broadway. Spring Awakening was by far the high point. Great music, great story (based on a German play from the 1860s. It’s uncanny how although things change, they remain the same. The same issues of adolescence/young adulthood that existed then, exist today. It was quite the provocative play, and banned/censored, or re-written-edited. It’s just like the Bush Administration of current history.

Also in ’07, I did something I’ve been wanting to do for a long time. I got a tattoo. (DON’T TELL MY RELATIVES!) It’s a Latin phrase that has been my mantra through much of the past 10 years. It’s between my shoulder blades on my upper back and reads, “non illegitimi corborundum est”, the English translation is “don’t let the bastards grind you down”. I consider my ‘war badge’ for getting through the aforementioned.

Wednesday, December 12, 2007

Dreaded Day of the Month

Tomorrow (Thursday) is my monthly ‘dread day’. It’s my monthly IV IgG infusion. I dread this day every month. It’s not the infusion I dread. It, in and of itself is not bad. It’s mild discomfort at the most (usually). What I hate is getting started. The gods, in their sick and twisted humor, gave me a disorder that requires monthly IVs, while giving me tiny rolly veins. Very few medical professionals have ever been able to get an IV or syringe for a blood draw on the first try. It’s usually twice, the record being 4 the last time I had surgery at a hospital I had not been to before. The medical practice I go to now, has 1 med tech (Travis) who has an almost perfect record with me. There’s one nurse (O), who is pretty good. When I first started the infusions a few years ago, the head nurse (H) who was determined he was going to tap my vein or die trying. It took three tries. The next month, I said, “You get one chance. He blew it. It took about four months, and me finally insisting on Travis. THere have been a few new nurses or techs in the intervening months. ONe time after 2 people, 3 stabs, I finally insisted they find Travis. He said, "Ask for me." I said, "I do! THey won't get you until after they've all tried. Since then, I pretty much get him. A few months back, he came in and, said, "we were all fighting for you in the back. I won." That made me so happy. One, that he considered getting stuck with me as 'winning'. And, to be totally superficial, he's so damned hot. He could multiply stick me, and I wouldn't be pissed like I am with the others. We have a good banter back and forth. He has a sense of humor. One time he was inserting the needle. I never watch the needle go in. I don't freak out by it. I just don't like to see it go in. Once in, I can look down, and help tape it down and secure it. Anyway, He said, "I'm done." I replied, "Wow, I didn't even feel it go in. YOu're good! His retort, "Tell that to ALL the men!" Travis could 'stick' me and I wouldn't protest.
So, here's hoping I get Travis tomorrow. He makes the infusions less sucky.

Sunday, December 9, 2007

Great Cancer Post

I read this great Cancer posting: http://www.huffingtonpost.com/matthew-zachary/the-cost-of-living-no-cu_b_56003.html

from this blog http://nosugrefneb.com/weblog/2007/12/07/cancer-research-blog-carnival-4/#comments by Ben, an MD/PhD student, who's site I stumbled upon a few months ago.

Cancer patients, survivors, and loved ones will find the first posting very good reading. The scientists/physicians among you will find the rest interesting. I think Matt has the perfect post script in his response, "STUPID CANCER".

MUPD: if you're reading this, please sharing Matt Zachary's post with MB. Tell her good thoughts and karma are coming her way. ~YGS

Wednesday, December 5, 2007

Post Script (1)

I sent am email to 3 of my former colleagues and friends (they're not former friends, they remain friends) from 5RH (5th Ring of Hell) to let them know about the accreditation good news. Following is part of the reply I received from A:

"...Good for you, Randy! This is a full circle moment for you -
you have proved yourself through programming, and now
you got a super review! Now that the documentation is
in hand, I hope they continue to recognize your fine work.
After spending time in this crazy system, I'll bet you were
questioning your abilities. Now you know for certain that
it wasn't about you!Congratulations! ..."

This was incredibly kind, and the sentiment wasright on the money. It's the nicest and best thing someone could have said. Especially someone who knows CME and the process, and my life before this current position. She knew how miserable I was and how completely un(der)-utilized and un-appreciated I was there. I do have one correction, though. We got a good review. It wasn't super. There are times for all of us, when we go through something, and the only ones who can fully understand or appreciate the significance are those who have share that (or previous/similar) experiences. Cognitively, I know I'm good at what I do. When others play continually beat you down, that kind of bullshit plays with your psyche and you DO begin to doubt yourself, even when you know it's bullshit. A corrolary to the addage: "Living well is the best revenge." -- "Doing well is the best revenge!" I"m succeeding at the things, I wasn't allowed to do in my last job--the very things I was supposedly hired to do. Go figure. They pissed away someone who could have done a lot of great things for the organization. What a loss for them. Idiots.
Every little and big success, every abstract accepted is a great way of saying "FUCK YOU" to my former employer. "Doing well IS the best revenge!"

I was there for over 3.5 years. But I'm not there anymore.

Life is good.

Tuesday, December 4, 2007

(S)cum sucking pig

The Advocate Online has this latest story about Senator Larry Craig. Eight men have come forward alleging they've had sex with him. Jesus Christ, Senator, have you no shame?! Resign already. For all of the anti-gay legislation you helped pass, karma's a bitch, you hypocritical piece of excrement.

"Eight men say they either had sex with Sen. Larry Craig or were targets of sexual advances by the Idaho lawmaker at various times during his political career, a newspaper reported Sunday.
One of the men is the former escort whose allegations disgraced the Reverend Ted Haggard, former president of the National Association of Evangelicals, the Idaho Statesman reported. ..."

Full story is in the link.


Monday, December 3, 2007

The stars are aligned for me today...

…And the Gods are smiling upon me. I called today and FINALLY got the word on our accreditation results. We got 4 years, full accreditation, with no interim report. I am shitting happy bricks. Our review/interview was in early June. The physician who was the lead reviewer for us was, well, how do I put this? Oh, I know--A complete f#¢king a$$hole, who had an ax to grind and we were his honing stone. The co-reviewer spent the whole interview trying to mediate and facilitate between the Dr. and us. Even though you know when you’ve done well, when someone else holds the outcome in their hands, you don’t always know how it’s going to turn out. I will get the official ‘piece of paper’ in the mail later this week that has all of the details. But 4 years, full. I’m happy.

Additionally, I received notice today that an abstract I submitted to present at a conference in May was accepted. Vancouver, BC, here I come! If I didn’t have to drive out of town tonight, I’d be sipping some good Highland single malt scotch in celebration. Damn, I’m so frickin’ hot, I’m on fire today!

At Thanksgiving, I got a cold from my nephew. My colds usually turn into the nasty bronch infections. For the first time in 15 or more years, it didn’t! Are these $8K monthly infusions of IgG finally working after two years?!? Woo Fucking Hoo! Let me say it again, WOO FUCKING HOO!! Has the December curse finally vacated?

Thursday, November 29, 2007

Unwelcome Visitor

Ever since Monday, I’ve had the return of an unwelcome visitor—migraine. It’s been a long time since I’ve had a migraine (not related to a sinus infection)—I think the last time I had a ‘stand alone’ migraine was back when I was still working at 5RH (5th Ring of Hell), my former employer. Then, it was easy to determine the causal factors of my migraines. It was all stress induced. I don’t know what’s brought this one on. Pre-holiday dismal-ness? Historically, it’s usually mid December when shitty things happen to me—(bad medical diagnoses, getting fired, auto accidents…) It feels like there’s a tiny boxer using the back of my right eyeball and right side of my brain for a punching bag. The Imitrex is not doing its job.

Wednesday, November 28, 2007

WORLD AIDS DAY, December 1

In October of1996 I had the honor of being in Washington, DC for the occasion of the Names Project AIDS Memorial Quilt display on the Mall between the Capitol Building and the Washington Monument and march on Washington. That was probably the last time the Quilt will be in its entirety due to its growing size. At that time, the Quilt covered over 40 acres of land (that’s 29 football fields for you non-agrarians) honoring and memorializing over 45,000 lives lost to AIDS. Although I had previously seen the Quilt 4 years earlier in DC, and was involved in bringing a section of it to The University of Illinois at Urbana-Champaign in 1994, its impact was still overwhelming and numbing to me. I kept finding myself walking through the sea of panels, and not seeing individual panels, but panels ‘en masse’. It was just so much to take in, knowing every panel over 40 acres represented one person lost to AIDS. During the candlelight march, when we were walking to the White House, to protest against Bush the 1st, there were the people I’ve seen at every protest, sometimes, social events, churches with their brand of hate mongering in the name of ‘their’ God. They had the signs and placards reading, “God hates fags”,. AIDS Cures fags” to identify a few. (That must mean Lesbians are God’s chosen people, as they've been passed over for HIV.) While I see this vitriolic sewage for what it is, there are many gay men who have heard corollary sermons and speeches in their home churches, schools, and other places that they start to believe it. The primary social activity for a lot of gay men in the early and mid 90s was attending the funerals of our friends and/or partners. Thanks to medical advances, this is no longer the norm. The flip side of this is that HIV is now viewed as a treatable chronic disease, like diabetes. “It’s no big deal if I get it. I’ll just go on a cocktail.” I’ve actually heard gay men say this! For many young gay men, ‘bug chasing’ (intentionally trying to get infected) has become seen as a right of passage, becoming a "Member of the Tribe", and HIV an inevitable consequence of being gay. HIV prevention programs still do NOT do a good job of addressing psycho-social issues. For those of us who have buried too many friends and loved ones, multiple loss syndrome and survivors’ guilt are very real issues. That teens and young gay men see HIV as ‘a given’ is a clear signal that the current message is not effective.

The continent of Africa is becoming a nation of orphaned children, who have lost their parents to AIDS. Teaching teenagers about safe sex is not 'giving them permission'. It's informing them of what they need to do to protect themselves and their partners. Needle exchange is not a moral issue. It's a HEALTH issue. And evidence shows that it works.

Of course when elected officials (and those granted office by the Supream Court) as well as religious (local, national and international) leaders who refuse to advocate the use of condoms, and responsible sex is unconscionable and morally & ethically irresponsible when prevention is so easy. To use god as a prohibition for condoms in a world wide pandemic is the highest form of hypocrisy and blasphemy of that god they purport to glorify. Clicking red Prada slippers 3 times isn't going to make it go away. Dorothy's not in Kansas anymore. If there is a god, then there should be a special place in hell for every last one of these people. THERE ARE TOO MANY PEOPLE STILL GETTING INFECTED IN THE 21ST CENTURY! We are all busy. Our lives are hectic. On December 1, please take a moment, think of those who are gone. And think of what you're going to do to make a difference, to make sure that they didn't die in vain.

Monday, November 26, 2007

My medical horror stories Part I or How Doctors (sometimes DON'T) Think ©wtf/rle

My medical horror stories, Part I or How Doctors (sometimes DON'T) Think ©wtf/rle

This is the first in a series of true life actual stories of my experiences with the healthcare system.

I just finished reading the book, "How Doctors Think", by Jerome Groopman. I also had the opportunity to see and hear him speak recently at a conference. I was pleasantly surprised that it was NOT a dry, academic tome. He used stories of physicians as examples to the physicians' thought processes. I found the book facinating, and was able to identify the traits he describes on many of the physicians of whom I've been a patient.

In Spring of 1995, I moved to Chicago. Later that year, I got a bad cold, that turned into a bronchial infection. That was nothing unusual, as my colds have always gone to my chest.

Only, they started happening more frequently, and the occasional sinus infection would get thrown in for good measure. At one point I said to my then PCP, "There's something wrong with me that you're not figuring out. I shouldn't be getting sick all the time like this." I saw specialists. Being a gay man, the ID doc (a woman) concluded that I must have been testing false negatives for HIV. This would happen again a number of years later. For any physicians who may be reading this, let me state for the record, this is a really shitty thing to do to a patient, and it really fucks with one's head. Groopman talks about how physicians see patterns; look for patterns; and sometime try to make patterns that don't quite fit, because that's how it 'should' be and the odds/probability says it should be that way. I used to joke that I was a walking CPC; that I was the sickest non-immuno-compromised person I know. My HIV+ friends were healthier than me. (The joke was on me.)

In May of 1997, I had surgery on my R should (acromioplasty, and removal of bone spurs on my clavical, and some minor repair to the rotator cuff). The recovery went bad. I developed adhesions. At the time I was on an HMO. When I had my first meeting with the surgeon ("L"), I didn't like him. I told my PCP ("H"). He would not make a referral to anyone else as "this is best surgeon in the city". I knew who I wanted. It wasn't this guy. I wanted a sports med orthopaedic surgeon doc ("B") that I knew and who had done some programs for me. The PCP would not acquiesce. At that point in time, I (foolishly) trusted the PCP. ALWAYS TRUST YOUR GUT INSTINCT! It's your health they're screwing with. When I went for follow-ups, I told the surgeon, "Something is not right." I was not intimating that he did something wrong, but that I wasn't healing the way I should be. First, it was going way too slowly. The general anesthesia seemed have hold over effects. I was lethargic, range of motion was not where it should be, and I was still in a lot of pain. He tried to tell me it was sympathetic reflex syndrome.
The day the proverbial shit hit the fan was when I saw the surgeon "L" again. He agreed that maybe something was not right and wanted to get some films and run more tests. Without going into detail, the next day when I see my PCP "H", the surgeon "L" told him the antithesis of what my conversation with him "L" had been. By this point I was sufficiently pissed. I was on the phone with the insurance co. [side note: Let me state for the record they were some of the biggest assholes I've ever had the displeasure of dealing with. Despite their name, they were anything but humane). They don't like people who know healthcare and how to navigate the system. As frustrated and pissed as I was, I couldn't help but think of the majority of the population who DON'T know how to navigate the system, and get screwed by insurance.] Additionally, the customer service (and I use this monkier loosely) was nothing short of a rude bitch. I had never been treated so dismissively rude by someone who's job is to deal with the public and 'customers' of that institution. Again, she didn't like people who know how to navigate the healthcare system, and who refuse to be duped. I filed a formal complaint with the hospital and the IL Dept. of Insurance. I'm not one to casually do something like that.

I wanted a second opinion, and I wanted it from the doc ("B") I originally wanted to do the surgery. I few days later I get a registered "Dear John" letter from the insurance company 'divorcing' me from my PCP "H", and that I need to make arrangements to get my medical records. WHen I call "H", he says he has no idea of what I'm talking about and that he did not initiate the 'divorce' procedings. To this day, I don't know whether he was as clueless as me, or whether he was feigning ignorance.

I meet with ("P") an internist that I used to work with at a hospital in the burbs. The insurance co, guaranteed that he "P" could make the referral to the surgeon "B" I wanted. After a thorough H&P, he writes the referral. Insurance refuses to accept it because "B" is not at the hospital that my PCP was at, and that I would have to have surgery at "P's" hospital, by one of the staff surgeons. Yes, after I made sure and confirmed with the insurance co. that they would accept the referral from "P" to "B". I had to go through this routine again with some new (unknown "U") PCP, because he could write the referral to the "B". So, I essentially used "U" to get the damn slip of paper that the HMO would accept, and never saw him again. "B" gave the adhesion dx, and recommneds steroid injections in the shoulder [there went all of my Olympic dreams!], as he didn't want to repeat surgery so soon. The nurse fails to mix the three solutions together in one syringe, so I get stabbed 3 times. And, yes, it hurt like a MF--3x. The injections do not help. So, "B" says he thinks he'll have to cut me. He wants to do MUA (Manipulation Under Anesthesia) and a debridement. When "B" came up to check on me in recovery, he said, "Your shoulder started, 'snap, crackle and popping' almost immediately! There were some really bad adhessions!"
"Did you think I was lying all this time? I told you I was in pain." He told me it should have been detected almost immediately (like when I first said, "something's not right" the first time to "H".
I didn't follow into the normal protocol or practice guidelines of how recovery from acromioplasty, and "L" didn't want to consider other options, especially when it might have meant error or his part. [I think the surgery was done correctly, but the follow-up was where he was negligent.--

Surgeon "B"listened to me, the patient; he didn't dismiss me as being unable to assess what is "normal" for me. He respected me as an intelligent, capable human being. He collected as much information as he could to make the DD.

Surgeons tend to get a bad rap from other physicians and healthcare professionals. I always defended them, as I had mostly had good experiences and good working relationships with them. The time I get the jerk surgeon is not working with him, but when he's cutting on me. This is indicative of how my luck runs.

Again, my recovery was much more protracted than it should have been. But I did not develop adhesions this time. I started PT/movement the next day. These surgeries were, I believe the catapulting event(s) that set things in motion for what was to follow. Stay tuned for the next episode.

I've lost my sole, man!

I've mentioned before that I like Kenneth Cole clothing. OK, I'm obsessed with his line, shoes, especially. I have my favorite pair. Sqaure, blunt toe, black slip ons with a strap and buckle across the arch. They need polished. But, other than that they're in great shape...or so I thought.
For the past few weeks, when wearing my favorite black KC shoes, I kept hearing a 'rattling' when I walked. The (decorative) buckles were not loose. I couldn't figure out what the hell was rattling when I walked.
Today, I took my shoes off in my office and looked at the heels. (These shoes have a thick rubber sole and heel.) The heels had little squares cut out of them, so they were not a solid piece of rubber. It turns out, the rest of the heel was not solid either. I have worn down my heels enough, that I have worn a crack/hole in them, and pebbles had worked their way into the cracks (of both shoes!) and were bouncing around in the little space, every time I walked, causing the rattling sound. With some work, I was able to get the pebbles out of the heels of my shoes. I'm not ready to part with the shoes, but I may have to reconsider wearing them when the snow starts to fall.

Tuesday, November 20, 2007

I wish you’d known me BCP* (Before Chronic Pain) © wtf/rle

I find myself making this statement to friends that I’ve met after 2001. I feel the need to put qualifiers on ‘me’, who I am now, who I’ve become. Because I’m a very different person than I was in 2000—and not just in the growth that hopefully we all go through as we mature and the years roll by.

Whenever I tell this to someone, I follow up with, “I used to be a really fun and funny person.” I have a very distinctive laugh aparently. I've been identified in dark movie theatres and even once on the radio when I was in the audience of a program that was recorded and later aired by my laugh. More days than I care to count, I’m less fun and less funny. It really sucks (poorly). [Side note: A friend once gave me the dubious honor of naming the “Randy Suck ‘O’ meter”. It gages the degree of suckiness, as I always use a modifier in identifying such things, because sometimes sucking well can be a good thing. Vacuum cleaners you gutter minds!]

I went through the 4 week intensive outpatient program at the Chronic Pain Center of the Rehab Institute of Chicago. It was M-F, 8:00 – 5:00 for 4 consecutive weeks. Those four weeks rate as among the hardest in my life. I’ll talk more about that in some future FLASHBACK post. [Now there’s an oxymoron – Future Flashback] The program takes a behavioral mod approach to teaching pain patients [I loathe the word ‘sufferer’. It’s so damned victimizing and condescending.] coping mechanisms to deal with and learn how to live with chronic pain, as it’s now with you and a part of you that ain’t gonna go away. Let me reiterate: IT SUCKS POORLY!

During one of the group therapy sessions, we were talking about loss, and the things that chronic pain has and/or will cost each of us. I lamented that I used to go on canoeing/camping trips to the Boundary Water (BWCWA) with friends. I would no longer be able to do this because of the chronic pain, and it really pissed me off. The shrink, comes back with {paraphrased with allowance for memory and time passed), “OK, so you can’t canoe and camp anymore. But you can do day trips and stay in cabins.”
Now, before I proceed, let me state for the record, cognitively I understand where she was going with this, trying to get me to see different options and alternatives. It’s behavior mod, I get that. But at that moment in time, I wanted to scream, ‘Fuck you, You Bitch! My life is changing in many and mostly bad ways, over which I have little to no control. How dare you toss out some platitude, thinking it’s somehow going to placate me and suddenly make me feel all better!”

Chronic pain is a thief. Sometimes it’s a silent and stealth thief. Because it’s constant, and in my case, usually not excruciating, it slowly and steadily sucks away my energy (and sometimes it feels, my soul as well). BCP, I used to be able go and do without forethought. I could be tired and ‘running on empty’. But since CP, I have no empty to run on. Before I learned how to manage it, and to know what my particular warning signs are, I could be out with friends, and suddenly hit that wall, and I was spent. One time that is etched in my memory was one August, when I was out with my then boyfriend. We were at a street festival which is my favorite weekend of the year in Chicago. I planned my summers to make sure I was in town this weekend every year. We’d been walking along, had been out for probably 3 hours. All of a sudden, I hit the wall. He knew. He looked at me with an uneasy look on his face and said, “You’re not OK, are you?!” We had to stop. I had to sit and rest. I had to sit and rest to have enough energy to walk to the EL station to take the train home. The day/weekend was blown.

It’s also hard to make plans. I can’t know when I’m going to have a ‘bad pain day’. I’ve lost count as to how many times I’ve cancelled plans because it was a bad pain day. Friends get frustrated because I’m canceling once again. It doesn’t frustrate me. It angers me. It really pisses me off. Anger is a very private thing for me. I don’t let others see me angry. I wait until I’m home and I can punch walls or woodwork or door jams (the latter two are hell on the knuckles, but save on plaster and drywall). The odd thing is that it’s the little things that push me over the edge. Crisis?! Hell, I can handle that. I’m used to them. Knock over my coffee cup, or drop something, and I snap like a dead twig in January.

I had to resign from one of the best jobs I’ve ever had. CP robbed me of that. I don’t like the person that chronic pain has created. I want back the person who didn’t have to think about whether spending the afternoon at a street fair would be too taxing. I want back the man who could meet friends for a vacation and not worry about crapping out on the trip. I wish you’d known me BCP. ©wtf/rle

Monday, November 19, 2007

Do these pants make my ass look fat? ©

In some ways I fit into the occasional stereotypes of the gay man—I love theatre, and musical theatre and even (especially) showtunes. I don’t really follow sports, and I was never athletic. I sucked so badly in Little League, and the one year I played (sat on the bench) basketball in Jr. High.

In other ways I don’t fit the stereotype. My apartment is usually messy. I’m a packrat. Martha Stewart would go apoplectic or have a TIA if she paid an unexpected visit. Friends tell my apartment is very comfortable, homey and welcoming. That’s more important to me than making sure the magazines are in a perfect fan splayed across the coffee table.. I’m not an A&F pretty boy model. Now, I’m NOT butt ugly. I’ve just never been cover boy material. Sometimes I let my hair (what’s left of it on my head) grow long before getting it cut, usually have weekend scruff. I like to think that I dress well, but I’m not what fashionistas would call a ‘label whore’—with the exception of Kenneth Cole. I buy his clothes and shoes for three reasons: I like the cut and fit of his clothes and shoes on my build; I love his look; and I love that his ads are Left Wing (or anti-Right Wing) political. It took a hefty pair of gonads to do that when he first started out. Any corporate entity that openly (or subtly) bashes "W" wins my retail dollars. And the converse it true. I boycott.

Over the weekend, I happened to see a posting on Craig’s List for a garage sale. By nature of the location of the posting, I knew that it was gay men who doing the selling, and had listed lots of clothes. Over the past few years, I’ve lost over 50 pounds, and in particular, ~ 15 this past year. Most of my clothes are very loose on me now (which feels like a great accomplishment). Even my “skinny jeans” (remember Miranda, Sex and the City) are loose. I really don’t fit in the hip hop world, so having my pants below my butt crack is not a good look on me. I’m really not in a financial position to replenish my wardrobe. So, I thought “gay men’s garage sale? I should check it out”.
This garage was better stocked that some Salvation Army resale shops! I was finding Kenneth Cole, Hugo Boss, Ben Sherman (and even an Armani shirt that fit me—and it’s even purple!). Some may argue that the mere fact that I even know these names makes me a guilty party. OK, I was for a brief moment in time, a “label whore”. When I’d filled up 2 kitchen garbage bags, I stopped. Also, it was cold and I was getting hungry.

I went home. I tried everything on. All the pants fit very well. Some of the shirts a bit big, but I knew they would be as they were M and I can now pretty much wear S in most shirts. Having downed a sandwich and warmed up, I decided to drive back across town and hit it again before they closed down. Andy was bagging things up as I arrived. He remembered me. Andy asked what I was looking for. “31 inch waist and small shirts.” I was power shopping. Two more kitchen bags filled, and I was back on my way again. For $36. I got 16 pairs of pants, 13 shirts, 2 ties, and a wool scarf. Not bad for a Sunday. But I am a bit embarrassed that I bought the Armani and Hugo Boss solely for the names. Is there a 12 step program for label whores?
Oh, btw-my ass looks great in the Hugo Boss! © rle/wtf

Friday, November 16, 2007

Professor Plum, in the Dining Room with a Cabernet©

FLASHBACK: Here's one of the funnier, lighter of my medical tales. It's a bit long, but I think you'll enjoy it.
“Professor Plum, in the Dining Room with a Cabernet”.© wtf/rle

Monday June 11, 2001, was a typical day. I came home from work with the plans of packing and moving the last few things from the kitchen, in anticipation of starting the gut rehab-remodeling project. I decided that I’d roll up the antique carpet in the dining room and have the cleaners retrieve it, to keep it from getting any worse for the wear during the rehabbing. The only glitch was, that the front legs of the baker’s cabinet were parked over the edge of the rug. No problem! I can gently lift each leg, while pulling the rug out from under it. I get down on all fours to accomplish this task. The procedure is going smoothly until the front left leg, which is being a little problematic. The pad is sticking to the floor. I’m tugging, while hoisting the front left leg up, when my tinker toy-esque wine rack chooses this moment to show its structural instability and 14 bottles of wine come tumbling down upon me. I am conked on the top of my head at the back right side. I look in front of me to see a busted bottle of Zinfandel soaking into the aged, dulled hues which were once a beautiful tawny taupe, brilliant sage, ashes of rose, and delicate azure blue. Damn!

I immediately grab the site of the conking to rub out the pain. Feeling something warm and wet, I pull my hands back quickly, and look at them, and in that brief millisecond as reality strikes, quickly deduce, “shit, that’s not Merlot on my fingers!”

In the flash of cognitive dissonance, I’m in a quandary, “Do I tend to my profusely bleeding skull, or try to save the carpet?!” Even though I had just suffered blunt trauma to the posterior of my cranium, rationality did kick into gear, as I comprehend that wine AND blood are much more difficult to get out of the carpet, than merely wine. I do manage to find the round box of Morton salt, which had been packed away and pour it over the wine spillage (I am a gay man, and DO read Martha, after all!)

I run to the bathroom and grab the burgundy polo hand towel hanging by the sink and press it to the back of my blood dripping skull. (Note to self-- Ralph Lauren’s Burgundy Polo towels soak up a profusion of blood with nary a trace of the sanguineous residue. The shade is a perfect match for human blood!) With bloody towel compressed against the back of my skull, I release that final grasp of denial and ascertain that I am indeed going to have a date with the Emergency Room.

While proficient at multi-tasking, I don’t think that I can drive, shift, and compress a bloody towel at my throbbing skull all at the same time. I call my friend John. “John, I think I need to go to the Emergency Room!” John’s roommate, Douglas has a car and reluctantly agrees to take me to the Emergency Room.
Once I’m in the car, John immediately begins quizzing me on current history to rule out concussion. “Who’s the president?”
When I reply, “THAT ASSHOLE!” John is convinced there is no brain trauma.

Douglas drops us off. We enter the ER. There is NO one stationed at the security stand just inside the door. No triage nurse. I wander around to the registration area, with this bloody towel hanging from my head, and am greeted with, “Have you signed in? Did you see the triage nurse?”
“No, there’s no one there”, I reply.
“You have to see the nurse before coming to registration.” I repeat this scenario three times before Arlita gets it through HER skull that no one is at the triage station. God forbid I don’t follow the ER protocol with precision, bleeding skull or not!

Nearly two hours pass. I finally see the triage nurse who confirms that I have split open my head. I was ever so grateful for this confirming diagnosis, as the blood drenched towel wasn’t conclusive evidence up to this point.

After about an hour, my name is finally called. I get placed in bed number 6. I am greeted by two nurses in succession, who ask me the same questions, promise to return, but dis me for some one whose malady is more emergent (or interesting) than mine. Another hour later, a fourth year resident (I asked, as I knew that this was new resident switch week from my days of working with residency programs) approaches me to tell me she’s going to take care of me. I get the option of sutures or staples, with the caveat that if I opt for the staples, I’ll be out in 10 minutes. (She lied.) Also, being the drama queen, I determine that staples will be much more effective to the story, when I am called upon to recant it. I am then seen by the Attending physician to confirm his Resident’s diagnosis. He wants to hear the story of how this happened. I tell him it’s a stupid story. He loves stupid stories and cajoles me into telling. He appreciates the story; we exchange few tidbits of humor for my benefit (and at my expense).

Both, the Resident and Attending told me that the worst part would be anesthetizing the area before co-joining the flaps of flesh. This time, I was told the truth. This could have something to do with the fact that Madame/Dr. Resident pulled out a syringe that normally is reserved for the large animal clinic at the zoo. This syringe is so large that excess lydocaine which does not go into the skin, comes rushing down my neck and back in rivulets drenching my T-shirt.

Once she thought I was sufficiently numbed (she was mistaken), the staple gun comes out. I get the “Type A” physician (I know, what physician ISN’T type A), who is the consummate perfectionist and doesn’t like the way some of the staples have gone in, so she digs them out and staples again, repeatedly Although I can’t feel (most of) the staples going in, I can feel the pressure she is using on the staple gun like she is trying stretch spandex and secure it so tightly that it no longer possesses the quality of elasticity. But, the part that hurt the most was that she didn’t need to shave away any hair. The male pattern hair loss negated this need.

She is finally satisfied with her skin flap fastening acumen. She tells me I need to come back in 7 days to have the staples removed. I don’t relish the thought of sitting in the ER for another 3 hours next week for a two-minute procedure. I asked whether I could just go to my PCP and have him do it. I’m told that most docs in private practice don’t have the special staple remover medical device (which I later discover is also a lie). I speak to her with sufficient lingo from the medical lexicon, she acquiesces and gives me the staple remover and tells me that I can take it to my PCP.

Finally, I believe that I am ready to go home! Au contraire! The hospital computer system crashes and they can’t complete my discharge form. As this hospital is a member of the parent company with whom I used to be employed, this piece of information was sadly, not a surprise. The attending physician returns and tells me he’ll hand process my discharge, so I can leave. It’s after 11:00 p.m.

Meanwhile, John has been out calling various friends from his cell phone. My story has been securely placed into the fag phone tree system, so I can expect to see a story in next week’s edition of “Gay Chicago”. Our friend Steve agrees to come and pick us up and take us to our respective homes

On the following Tuesday, I visit Dr. Matt, who begins the process of staple removal. Ms./Dr. Fourth Year Resident fastened my flaps of skin so tightly, that Dr. Matt had difficulty getting the staple pliers underneath the staples. This WAS a painful as it sounds. He asks me if I want the area numbed. I replied with, “If you’re going to use a huge ass needle like they did in the ER, the answer is NO!” He comes back with a normal looking syringe, begins to shoot the area. Gee, when you use the appropriate sized needle, it’s not nearly as painful, and is actually a tolerable level of pain. Upon their removal, I finally get to see up close and personal the staples that have resided in my skull for the past week. MY GOD THEY WERE HUGE! I was expecting something of a rather thin/narrow gauge, something akin to sutures. I’m amazed that these strips of metal didn’t set off the detector when I left the ER that night! As souvenirs, Dr. Matt gave me the staple pliers, bent staples, as well as some gauze pads for the minor bleeding as a result of the staple extractions.

There are three amazing things about this story:

This is the first time in my 40 years that I’ve had to be pieced together (by thread or staple) due to accident or mishap. (Given my history, this is TRULY amazing!)
Out of the 14, I only lost one bottle of wine, a Zinfandel.
My dog, who has a propensity to be high strung, (especially as her Dad was screaming expletives and running around with a bloody towel hanging at the back of his head) maintained an incredibly docile demeanor throughout this whole scenario.

So, when I tell you that I have “splitting headache”, I am NOT speaking hyperbole.

FLASHBACK: All out Lysdexia, Take One ©

FLASH BACK: All out Lysdexia, Take One

Dyslexia permeates every aspect of my life. I’m old enough that dyslexia and most other learning disabilities were not identified when I was in grade school. Hell, I’m not even sure if the word existed in the late 60s, early 70s. But, I know enough from my degrees in education, and from knowing myself to know that I am mildly dyslexic. I transpose letters when typing (thank Buddha for spell check and automatic word correct!). I transpose words when reading, and the worst is that I transpose numbers all the time. For instance, if I were talking to you and you were giving me your telephone number you could be saying 897/524-6310, and I would likely write down, as you are speaking the words, 897/254-6130. It’s frustrating when I dial the number and reach some unknown person or get the beep of a fax machine. Or I punch in the wrong number on the phone key pad. So then I re-enter the numbers slowing, speaking them out loud as I read from my note and punch them in. If it’s still the wrong number or a new wrong number, I have to try and figure out which numbers I transposed when writing them down.
In retrospect, it explains some of the things I had trouble with growing up. For instance playing piano, I like the piano. I really suck at playing piano. I’m not being modest, it’s true. I don’t/won’t play for an audience. Playing the piano is a stress release for me. (Except for the times when I’m really hitting the wrong notes, then it’s a stress inducer). (I over use parentheses, I know. So call the grammar police.) I think and write in stream of consciousness and non sequiturs or toss in a comment that is tangential to help explain/expound on the previous sentence or comment. Back to the piano. In full disclosure, when I took lessons as a child, I did NOT spend my obligator half hour practicing every day. I was/am easily distracted. I would most likely be diagnosed with ADD today. When I played (and still play) I see the notes on the page. But going from my eyes to my brain to my fingers takes milli-seconds (or seconds) longer than it should. Especially once the notes stretch beyond the staffs. So, I’m stuck with easy piano books, or if I want to really learn something, like Pacabell’s Cannon in D, I have to sit down take it by treble clef/right hand, bass clef/left hand measure by measure, then put them together. For the most part, classical music in a part of my repertoire. The exception being Cannon in D, which is one of my favorite pieces of music. I so envy those who can sit down and sight read anything put in front of them.
Geography-I am so directionally impaired it’s not funny. Well, yes it is funny to an observer. I have absolutely no sense of direction. I attribute this to the dyslexia.
So, where the hell is this all going, you ask? In a former life I was a florist. I was a damned good florist if I can be immodest for a moment. I had my own florist business. It was in my hometown, a small rural farming community. It wasn’t until I closed the business, and went to grad school that I finally came out of the closet—to myself. The whole while I was a florist, I was ‘straight’ or trying to be anyway, in an industry that is well known for a high percentage of gay men amongst its ranks. I had a large number of gay friends and acquaintances, but continuously deluded myself, but probably not most of them. (I even got fired from one job for NOT being gay—but that story is for another post.) I got the whole being gay/being a florist backwards. I came out of the closet AFTER I quit being a florist. This is how dyslexia has permeated another aspect of my life. I am so frequently bass-ackwards. © rle/wtf

Wednesday, November 14, 2007


When I was initially diagnosed with CVID a few years ago, I thought of starting a blog to let family and friends keep updated with the medical goings on. I vacillated back and forth (ok, that’s redundant), feeling it was too self indulgent. Part of my reticence in posting regularly once I started my blog was that I didn’t want it to be/read like a whiny ‘poor me’ epistle. I actually created my blog because I had to have a blog address to post on somebody else’s site. I occasionally post on other sites.
So, WTF. I’m going to give this a shot. It’s not like anyone’s being forced to read this. I’m not ever sure at this point that I’m going to inform the masses about it. I’m doing this for me. Some of it ain’t gonna be pretty. Again I say WTF. BTW, I was “WTF” before “WTF” was cool, and an accepted part of the pop culture lexicon. Back in 1989, when I was closing my business, I was having lunch with a good friend, and made the comment, “If I ever have another business, I’m going to call it ‘WTF Enterprises’.” We’ll he had a bumper sticker created for me that was “WTF Enterprizes”. The “Z” was a spelling error (he’s dyslexic, like me), but I thought it very fitting. When I got hit by a car running a red light, totaling the car, I tried to save the bumper sticker for posterity. The mastic used was of high grade, and the polymer of the bumper sticker itself very elastic, so it was not salvageable. Ironically, we did end up salvaging the car, because I was a poor grad student with a loan payment greater than the value of the car. The car was rolled into my business loan/debt that I was paying off. But that’s another story for a later time.
So, I’m going to try and commit to this. My current vision is that it’s going to be a lot of historical posts interspersed with current day/current topic posts. The historical, because history informs who we are and how we are in the present. It helps to explain who I am and why I am here and now.
If you’re still reading, I hope you enjoy the ride with along with me and come back for future installments. ©rle/wtf

Tuesday, October 23, 2007


This is, I guess the 'dark side' follow-up to my NCOD posting on http://imablogaholic.blogspot.com/

It's autumn, the time of year when nature's cycle goes into 'death mode'. Deciduous trees and shrubs quit sending water and nutrients to their leaves, causing the color change, and dropping from the plant. That's the process of senescence. Non-botanically, it's the process of becoming old. (Merriam Webster's Collegiate Dictionary, 10th edition). I love autumn. I like the change of seasons. I even like the death. Yes, it's one of my odd quirks. It's the yan to life's ying. Though it has it's melancholy moments. Death seems to be around me.
Sunday, I was talking with my neighbor (and good friend). This week is the second anniversary of her father’s death. She’s a nurse. I was somewhat taken aback as to how hard it is for her still, two years later.
My Mom called me last night to tell me they’d just returned from the visitation of the father of one of my grade & high school classmate’s/friend’s. T was part of the ‘group’ that I belonged to from Jr. High on. Mom said she’d asked about me, told Mom to tell me she thought of me often. We’d kept in touch off and on, until she’d gotten divorced and moved away from the last address I had for her. I don’t know why she chose not to let me (& others) know she’d relocated. —Embarrassment? Shame? What I know is that I missed not knowing what was going on with her—even if only via the holiday updates. She’s the second one of our ‘group’ to have now lost both parents. Our group knew death from an early age. We lost a classmate to cancer in the 8th grade. Mom was like the Grim Reaper last night, regaling me with the death notices of another classmate’s mother, as well as two other people from the small town where I grew up. I’m reaching that age where this is going to become more and more common. I’m fortunate that I still have both parents living and healthy.

I was in grad school when I finally came out --to myself--when I finally said the words, "I'm gay". To take off on Dickens, “It was the worst of times. It was the worst of times.” That’s NOT a typo. I had begun seeing a shrink at the student counseling center on campus (with whom I credit my presence on earth). Integrity is a trait that has always been high on my list. I felt as though I had none. I felt as though I was a fraud. Even though all the things I’d been taught in church, and even through all the prayers to ‘fix me’. The feelings I had would not go away. I had emotionally, spiritually, and nearly physically “senesced. Something had to change. I had to accept who I was, deal with it or cease to exist. The latter came very close to being a reality. The unwitting intervention of a friend prevented that.
The metaphoric death of the closeted, faux me had to occur for the rebirth of the ‘true’ me to happen. While I no longer consider myself (nor would others) a religious person, I like to think that I’m a spiritual person. It really pisses me off that people think and use these two word as synonyms. But that’s a whole post in itself.
When I get nostalgic about autumn, there’s a tinge of melancholy, but mostly it’s gratitude that permeates my being. The autumn of 1989 was pure hell. But I walked, sometimes crawled, and sometimes was dragged through hell. I made it through and came out on the other side--the phoenix arising from the ashes in spring of 1990. I’m reminded of the death that had to occur in me before I could really begin living. The scorch marks and scars are still present, though mostly invisible to others, they merely reminders of the journey. I’m also reminded that dormant friendships can be revived. I’m looking forward to that possibility.

Monday, January 8, 2007

First time out

January 8, 2007
New Blog, first posting.

I've been late getting into the game. I've contemplated starting a blog page for a long time and kept feeling it was such an act of self-indulgence. But the few blogs I've been to, I have thoroughly enjoyed reading. I'm not sure how active this will be and what and/or how much I'll decide to post.
By some wierd flukes of fate, someone should happen on to this space, drop a message. I'll see where this experience takes me.

For my first RANdom thought, I'll mention the book I'm currently reading, "What Is the What", by Dave Eggers. It's a novel (although, I believe it to be a biographical novel) about the lost boys of the Sudan. It has been hard reading--not as in difficult to understand or follow, but as in heart and gut wretching to read the details of what the narrator went through. It's another reminder as to just how myopic we are as Americans, not paying attention to anything beyond the borders of North America.
I'm not half way through it yet, but can't wait to keep at it. The further I get, I should be able to post something a bit more intelligent

I got to this book after finally reading Eggers' "A Heartbreaking Work of Staggering Genious", which has been sitting on my bookshelf for a few (+) years. But I'll save that book for a future posting, perhaps.
I'd be interested in comments from anyone who has read or is reading "What Is the What?"