“You’re just like me,” he said

vitiligo

On the bus recently, I saw a young woman with a “People Are People” handbag. On the surface, a reasonable sentiment. Part of me, though, is instinctually wary. Does this mean that we’re all alike?

And that is, of course, not accurate. We come with varied experiences in geography, different types of abilities, demographic characteristics, et al. I think we’re necessarily a bit schizophrenic about these things.

On the one hand, we hawk our individuality. On the other, at least some of us embrace our oneness. And, I suspect, both are true.

I was at the grocery store a couple months ago. The young man ringing out my purchase, even before scanning one item or saying hello, proclaimed, “You’re just like me!” And I looked at him, a young black man in his early twenties, and I knew exactly what he meant.

He had vitiligo, an autoimmune disease, on his face and hands. I have vitiligo. I told him I didn’t always have it. He said, “Me too. I didn’t have it when I was younger.” I meant I didn’t have it until I was 50. This common experience meant we’re alike, at least in that particular way. We had that connective tissue.

It’s like when I’m riding my bicycle in town. When I see other riders, they give me that head nod acknowledgment. Naturally, I return the signal.

This pic, BTW, is, unusually for me, a selfie, from about three years ago. This is about the time of the year I start wearing sunscreen religiously, if not earlier. I don’t wait for the summer. Also, I almost always wear hats. After the church play, there were a few unused white hats left over, and I took them all, mostly because I’m always misplacing headwear.

A man asked me about my vitiligo

an acquired depigmentation disorder

vitiligo-1I got vitiligo about 15 years ago, as I first talked about here, then here and here, and most recently, here.

It is “an acquired depigmentation disorder, manifests as white macules on the skin and can cause significant psychological stress and stigmatization… [and] affects about 1% of people worldwide.”

What prompted my revisiting the topic was that a gentleman asked me about it a couple of months ago while we were waiting in a bus stop. He said, “Excuse me, but do you have that skin thing?” “Vitiligo.” “Yeah, that’s it.” This happens two or three times a year, in conversations with people I did not know. It doesn’t bother me.

He was a black man, roughly my age, discussing his son who is in his thirties. He said that it really messed up his son’s head. And, as one sometimes does with a total stranger, I acknowledged that it did a number on me for a while.

Specifically, I’m still not all that great at looking at photographs of me from five or ten years ago. I was so cautious about staying out of the sun, that whatever melanin I had in my face seemed to have gone away altogether.

I look specifically at group shots that included me, and I cannot identify myself except that, well, that’s where I usually stand. In a black-and-white photo in my church newsletter from probably a half dozen years ago, there’s a guy wearing African garb, talking with his hands in the Rose Room of my church. I recognize the clothes but not the fellow wearing them.

Pretty much as a direct result of that specific photo, I became somewhat bolder in getting sunlight. I still avoid long exposure and use sunscreen. OK, I’m not as good with that on days that are cold and overcast as I should be.

So I related heavily to this man’s son’s trauma. In my experience, while white folks also have vitiligo, black folks seem more weirded out. In retrospect, it messed with my psyche far more than I admitted, even to myself, at the time. It was OK for me to look older and grayer and heavier, but this was different. I probably should have seen a shrink.

I have this thrill seeing models in Glamour magazine with vitiligo. In some TV ads, the first image was a young woman with the condition and, implicitly, she was seen as beautiful. In ways you root for people that are on “our team”, this made me happier than I could have imagined.

For ABC Wednesday

April 2017 health report: Vitamin D3

Rickets is not a term I’ve heard literally in decades.

Beyond the things my primary care physician said when I got to see her on April – the usual “lose weight” and “raise your ‘good’ cholesterol – was my need to get more Vitamin D3. I’m supposed to take 2000 IU (international units). My vitamin D level was 20 this year, up from 16 (on what scale I have no idea). But it’s supposed to be at 30.

Here’s my problem. Even as a kid, I never much liked going out into the sun. I mean, I’m playing baseball, fine, but just sunbathing? No way.

And it’s worse since developing the vitiligo at age 51, which makes me prone to burn in certain areas, including the top of my head, my neck and the back of my hands. I’m rightly concerned about developing skin cancer. This is why I often wear long-sleeved shirts and long pants, even in summer.

I just discovered something with the supplements I’ve been taking, off and on, for the last year. It offers 1200 mg of calcium and 1600 IU of vitamin D3 “in just two tablets.” TWO tablets! So I’ve been underdosing, and I need to take three tablets a day.

I must really be deficient, since only 400 IU is 100% of the daily value needed by the average person. Still, my doctor said I wasn’t likely to develop rickets. Rickets is not a term I’ve heard literally in decades. It is “a disease of children caused by vitamin D deficiency, characterized by imperfect calcification, softening, and distortion of the bones typically resulting in bow legs.”

But she did worry that I could be that old man who falls and breaks a bone. And most of us know that falls can be deadly to the elderly for that reason.

Speaking of falling, Dustbury linked to an article about how science shows why shoelaces come untied. This happens to me constantly; they’re ALWAYS untied. I am OK with it, but have tired of people telling me that they’re loose. I know, I know! And now I sort of know why.

Helmet head

I’ve discovered that, people with bike helmets are more visible.

Bicycle_HelmetThis is less a question than a statement by a guy who’s a Facebook friend, who I see seldom in real life, though he lives in the area:

I see you walking around with your bike helmet, even when you’re not riding.

To be clear, I DO have my bike with me. I responded, “You never know when some space debris might fall.”

The TRUTH of the matter, though, is that, sometimes, I forget, occasionally, that the helmet’s on. More likely, though, is that I’m afraid I WILL forget the helmet.

This has happened THIS calendar year: I wait for a bus with my bike (because I’m going on that 1.5 mile stretch over I-90 since bikes aren’t allowed.) I get on the bus. Getting ready to get off the bus, I realize I don’t have the helmet. In this case, I called The Wife, as she was home from school, and she managed to retrieve it.

This ALSO happened several months ago: I get off the bus take my bike off the front of the bus, the bus drives off, and only then do I realize the helmet is not on my head. It was winter or early spring, so I had a knit hat on, which I wear UNDER my helmet. Feeling SOMETHING on my head fools me into believing that I had my helmet. Fortunately, this bus, at my work site, doubled back, and I got the helmet before it left the area.

A secondary reason for wearing the helmet is to protect me from the sun. The vitiligo is particularly bad on the top of my head, and the helmet offers a measure of protection when I’m sitting at a translucent bus stop.

There are a lot of adults who don’t wear bicycle helmets when driving in the city, since it is not mandated. I think they are CRAZY. I’ve discovered that, in general, people with bike helmets are more visible. Helmet use has been estimated to reduce head injury risk by 85 percent.

I’d rather look silly wearing a bike helmet than end up brain dead.

The vitiligo update post

I’ll NEVER shave fully, because the beard offers protection for my upper neck.

vitiligo-1My spellcheck does NOT like the most prominent word in this post…

One of my ex-sisters-in-law wrote:

Hey Roger, I saw a recent photo of you and am wondering if you have vitiligo on your hands. I have it now and find that the sun stings me even with sunscreen. If you do have it, do you find that to be the same for you?

Yes, for over a decade. First posted about it here, and periodically since then.

This I can say: the lack of pigmentation, which is on my arms, legs, and face doesn’t bother me EMOTIONALLY as much as it once did. PHYSICALLY, though, it’s still a pain in the neck, sometimes literally so, if I don’t use sunscreen.

Thanks for the interesting information. I didn’t know about the possible liver connection. I’ve had it for about ten years as well. in my case, it seems to be related to the thyroid condition. I think the pattern of it is kind of interesting, but have trouble with my hands because of the difficulty of keeping them out of the sun.

The back of my hands burns as though I were a red-haired Irish schoolgirl. Quite vulnerable when I’m riding the bicycle.

Wow, I was hoping it was just the strong sun down here. I guess it will be that way just about anywhere.

I have no protection. MUST use sunscreen. I’ll NEVER shave fully, because the beard offers protection for my upper neck.
I did get it shaved back in 2013; I thought I looked hideous.

Me too (well, except for the beard). I try to schedule my outings for early or late to avoid full sun. I hate sunscreen, but use it when I must.

Yes, I was never a sunbather, but that’s not even an option. I do the timing thing. Those times I forget (usually on overcast days), I feel miserable later.

There’s a company called Sun Precautions that sells sunscreen and blocking clothes that you might like. It’s hard with the hands. I had some hand covers, but they didn’t work well for driving. I used a parasol too until it fell apart. I’ve been taking some medications that cause sun sensitivity as well. So it was handy …unintentional pun…
I am thinking of getting the travel size umbrella this time, There is a navy blue that might be better than the yellow one I had.

I probably ought to write about it again… I wear long-sleeve shirts in the summer, lest I burn. Usually wear long pants, rather than shorts. This may be unrelated, but I really NEED sunglasses on a sunny day.

Well, I learned something from what I just read. It’s good to inform other people, I think. I sometimes wear a scarf over my head an arms in summer and I’ve gotten some strange looks with that as well as the umbrella.

Better to look weird than get heatstroke.

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