Category Archives: vitiligo

The Shape of Things To Come

Happened to be a shop while, by chance, Obama’s Nobel Prize acceptance speech was on the radio. Understandably criticized, it was generally compared to George Orwell’s 1984. It made me think about a song that borrows from Orwell, Tracy Chapman’s Why?, which you can (I hope) hear here.
Love is hate
War is peace
No is yes
And we’re all free

But somebody’s gonna have to answer
The time is coming soon
When the blind remove their blinders
And the speechless speak the truth

***
So what should upon my wandering eyes should appear but ABC-TV’s schedule for Tuesday night, Dec 15: A Charlie Brown Christmas. From 8 to 9 pm – 1 hour. When they last broadcast it, LAST Tuesday, as noted here, squeezed into a half hour slot:

Gone was Sally’s materialistic letter to Santa, which finally sends Charlie screaming from the room when she says she will settle for 10s and 20s.

Gone was Schroeder’s miraculous multiple renditions of “Jingle Bells” from a toy piano, including the one that sounds distinctly like a church organ.

Gone was Linus using his blanket as an improvised slingshot to knock a can off the fence no one else can hit, complete with ricochet sound effect.

Gone were the kids catching snowflakes on their tongues and commenting on their flavor.

Gone even was poor Shermy’s only line. He thought he had it bad because he was always tasked to play a shepherd. He had no idea.

And why were all these classic scenes cut? To plug more ads into the show, of course. To sell burgers and greeting cards — and to relentlessly plug the insipid-looking new Disney “soon to be a classic” show immediately following.

So did ABC relent to some sort of pressure? Inquiring minds want to know. But THIS seems to be the viewing of A Charlie Brown Christmas to watch – or record, even if it’s filled with even MORE ads. And – it is hoped – an apology.
***
Still catching up, after two sick days this week. One of the truths I’ve long known is that when you’re sick or injured, but don’t act particularly sick or injured, people forget. I experienced that Wednesday, and I admit it: it made me rather cranky.
My wife and daughter both had a snow day, but they seemed to think it was MY snow day too; no, I’m home because …ever look at a computer screen and see it as doubled, only slightly out of sync? That’s what was happening to me. Yet the daughter wanted to play a game while the wife took a nap – a nap; *I* needed a nap. And when the wife announced that since we had this found opportunity, we could (oh, boy!) work on the household budget. No, no, no, it’s YOUR found time; it’s my SICK time. I almost escaped to the local library except I didn’t want to infect strangers.

It’s odd, but I hate taking off sick time. And I have LOTS of it. At the beginning of December, I had 145 days. If I use three in December, I still get 1.5, so I’ll still have 143.5 days left. And it’s not as though I get paid it out when I retire, or can apply the time to my health benefits; when I leave, I lose them. The only way I’ll use them is if I have a catastrophic illness or injury. But it takes so little to fall behind at work – 180 e-mails and 14 phone messages to look at on Thursday.
***
Two children’s birthday parties this weekend – goody.
***
I was looking at my face in the mirror recently and noticed that my cheeks are slightly darker than the rest of my face, as though the pigmentation after its loss in the vitiligo had returned. More recently, a small circle near my left temple and a larger circle around my right has also gotten darker. I find it odd that I really don’t know what I look like from month to month of late.
***
When I was growing up, there were two songs, with similar titles, which appealed to me. One was The Yardbirds’ Shapes of Things, which got up to #11 in the US pop charts in the spring of 1966. The other is Shape of Things to Come by Max Frost & The Troopers, which reached #22 in the fall of 1968. Seems to be my message du jour.


ROG

V is for Vitiligo

Since the last time I wrote about having vitiligo, I’ve gotten perhaps marginally less bothered by it. This is probably a good, even necessary thing, because, earlier this year, this woman I met at some library function said to me, “Oh, you have vitiligo, don’t you?” very matter-of-factly. Six months earlier, I probably would have cringed, but I tried to respond in the spirit in which the question was asked.

Still, it bothers me somewhat. There was a picture taken of an event during Black History Month that I was leading. It was a black and white photo that ended up in my church’s April 2008 newsletter. I recognized everyone in the picture except one person. That of course, was me.

It’s still also damn inconvenient. Those of you in the colder climes will appreciate wanting to be out in the sun after several gray, morose days. Inevitably, though, I get burned, on any exposed skin, especially the top of my head and the back of my neck. I’ve become, quite literally, a redneck. Ironically, it’s easier to protect myself in summer because the cues (the heat, the bright sun) triggers the use of the sunscreen, hat, and other accouterments.

One of the people who talked to me after the first time I wrote about my vitiligo said that she’d love me anyway, regardless of how I looked. But recently, she saw me and asked if my skin were getting gray. No, I replied patiently, it’s the vitiligo. OH, she said.


ROG

Michael Jackson Turns 50


I remember in the mid-1970s, Andy Rooney, the guy on 60 Minutes, used to do these occasional pieces, these “humorous” mini-documentaries about restaurants, or different ways people sing the song “Misty”.

One piece was about who is famous. I recall that while Paul McCartney was famous, Michael Jackson, then with the Jackson Five, was not, at least in his mind, Famous meant generally recognized, regardless of generation.

Well, if asked now, I’m sure Andy would consider him famous, or perhaps a bit infamous.

I like quite a bit of Michael’s music, particularly the early J5 and the early parts of his solo career. Last year at this time, I noted that I thought his 1979 album, Off the Wall, was better than his massive 1982 album, Thriller. The first cut from the earlier album can be found here. His electrifying performance at Motown 25, which I haven’t seen since the mid-1980s, still brings a smile to my face.

And I noted that since I share his disease, I viscerally understood some of his craziness (the surgeries, the mask, not the hanging a baby over a balcony.)

So, on his half century mark, I’m disinclined to go beat up Michael. I’ll leave that for others. I’ll just wish him well.

ROG

Snake in the Garden

Back in the early days of this blog, before I knew any better, I would write a “state of the blog” piece every month, on the first of the month. Now that I’m a more “mature” blogger, I tend to do this only on the anniversary of the blog, which is May 2. So consider this a (temporary) reversion to form.

There was a point in June when I seriously considered quitting doing the blog. not only were my numbers down, I was having this dispute with this other blogger that I didn’t understand over things on that person’s blog,

But then I started having dreams. Vivid dreams. Disturbing dreams. Dreams that pointed out my mortality to a degree that would wake me up and not allow me back to sleep. At the same time, it seemed to help answer unresolved questions that were lurking just beyond my conscious awareness. Sometimes, essays would come nearly fully formed. A couple became blog posts.

Another factor mitigating in favor of continuing – or maybe it’s the same factor – is that I realize I have more to say, whether anyone’s reading it or not. And occasionally, when someone like Shirlee Taylor Haizlip or Glenn Weiser, who thanked me for this piece (and in return, I corrected the misspelling of his name), write, it makes it worthwhile. As did a 13-year-old girl writing in response to my piece on my vitiligo.

I got a Twitter account on July 11. That would be July 11, 2007, made one post, then not again until this past week, when I wrote: “Saw a piece on ABC News about how some companies such as Comcast, JetBlue and Dell track Twitter for customer complaints. Very cool indeed.” So, I’m trying it on for size. Don’t want to have a “300 days ago” notation on it, so I’ll see.

I also finally added SamuraiFrog to my links. One of the curses of being in a cubicle is that pretty much anyone can see your computer, and sometimes, when I’m checking websites at lunch time, there are materials that don’t disturb me but probably would disturb others. So I just check him at home, where my wife can be disturbed instead.

Coming up this month: four or five posts that I started weeks or months ago that I never finished – it’ll be cathartic, at least for me; a feature I was doing regularly, but somehow dropped; on August 28, my annual FantaCo publication piece, already written in my head, but alas, not electronically; plus all the usual nonsense (yikes, I have to take more pictures of Lydia).
***
Me and Johnny B.

You are an Airbender!

Airbender

The Sky Bison taught the first airbenders how to bend the air around them. While they cannot fly, airbenders can soar in the air for long distances by using a glider. Most important to airbenders is the concept of non-aggression. When they fight, they do not attack but defend themselves through circular movements that confuse their opponents.

Which Element do you Bend?

(Photo by Mary Hoffman, July 2008.)
ROG

Stuff White People Like

A black colleague e-mailed me about a website called Stuff White People Like. I had heard of the two-month old blog before, but I hadn’t checked it out until this weekend.

I was curious how I would fare. Early on, I meshed with items 8, 12, 35, 36, 38, 43, 44, 46, 50, 55, and 57. But these last several posts:
* #78 Multilingual Children – well, optimally
* #77 Musical Comedy – I like Weird Al
* #76 Bottles of Water – afraid so
* #75 Threatening to Move to Canada – once in a great while
* #74 Oscar Parties – been there
* #73 Gentrification – not yet
* #72 Study Abroad – not yet
* #71 Being the only white person around – d/n/a
* #70 Difficult Breakups – oh, yeah
* #69 Mos Def – not so much
* #68 Michel Gondry – no
* #67 Standing Still at Concerts – depends
* #66 Divorce – yes
* #65 Co-Ed Sports – not recently, but there was that volleyball at the Y period in the early 1990s
* #64 Recycling – absolutely

My cultural identity is in shambles!

I jest, but there is this:
I was leading adult education for three weeks during Black History Month, a/k/a, February. The latter two weeks, this guy shows up and talks. A lot. About issues tangential at best to the topic at hand.
The last week, I’m wearing this African garb. As I rush from Adult Ed to the bathroom, then onto choir, this guy asks me if I were African-American. I figure he’s just yanking my chain and ignore him.
Then the new church letter comes out for March. Inside is a black-and-white picture of some of the participants of the first adult ed class I led, including someone who I didn’t immediately recognize as me. In my mind’s eye, I look the same as I always did, but the vitiligo has rendered me light enough so that someone who did not know me DIDN’T know that I was black. Most peculiar.

ROG

Michael Jackson's Disease

This is a post I’ve been avoiding.

And it’s not as though I have some fatal disease, or even suffer any real physical ill effects at all. Every summer, when it first gets hot, I’ve been getting a little heat rash on my forearms for the last decade and a half, which usually goes away when my body acclimates to the heat. But for about the last 18 months, instead of going away, it just blanched out. I know my primary care doctor noticed it last July.

As it spread to my neck, legs and trunk, I got a referral to a dermatologist. But, of course, actually getting to a dermatologist usually takes a while. Meanwhile, it became very noticeable, to me, on the back of my hands. And this was the worst, for one sees the back of one’s hands a LOT. The cliche became untrue: I no longer KNEW the back of my hands.


Anyway, a couple days before my last birthday in March, the dermatologist confirmed what I had long suspected: I have vitiligo. It is an ailment of the autoimmune system. It’s not contagious. Though there is some correlation with some certain ailments of the liver, it’s not causal, and in any case, I took a blood test to eliminate that possibility.

The dermatologist said if I were an 18-year-old girl, then there may be some aggressive topical treatments to suggest, but since I’m “mature”, this would not be the game plan. He said I was mature? Oh, he’s talking about my AGE, not my disposition.

And it’s spread to my face, which I’d been really worrying about. But it’s been more even there, with an almost complete lightening, except for some dark patches under my eyes, which are partially obscured by my glasses.

Here’s the thing: when I started losing my hair, I wasn’t that vain about it. Going gray didn’t bother me. In fact, a few months ago, I got a bread trim and a hair cut, and more than one person said I looked 10 years younger. Interestingly, I didn’t care, certainly not enough to change my behavior. That I weigh more than I did is largely under my own control.

This event, though, has gotten to me. It’s mostly because it isn’t a change that I was anticipating. Also, because of the patchiness, especially on the aforementioned back of my hands, I feel more than a little bit like a leper.

If you read the hyperlink above, you’ll notice “How Can People Cope With the Emotional and Psychological Aspects of Vitiligo”. This is relevant, because, for a while, and even now from time to time, it has really messed with my head. In part, it’s because this ailment has become associated with some wacko pop star. In part, it’s because I LIKE my brown skin, and it’s been part of my identity for so long.

There are ways to hide the effects with makeup, but, bottom line, some days, it’s really made me rather melancholy.
ROG