Monday, 4 May 2009

In which I discuss baldness (as requested)

The people have requested more information on hairlessness. I am a people pleaser, so hairlessness it is. Also, it means I do not have to think too hard about what I am writing today, which is clearly a good thing, what with having a day job and all. I am blogging whilst giving an induction on the ways of Ennui to our new slave. Poor poor slave. Thus far, between we have mustered the following gems:

1. If you have a run in with the Belgian police be really nice to them as they will probably hit you (C)

2. The tram has priority over EVERYTHING. That gling gling noise? That's the last thing you hear before 500 tonnes of gaudy yellow metal crush you to death. (Me)

3. Never go to a Belgian supermarket on Monday. If you really have to, bring a book (Me)

4. Dutch tv is good because of the subtitles (C)

5. Di is a bit like Boots. But nowhere near as good. Boots. Sob. (Me)

We have pretty much covered everything, and are reduced to staring at her blankly. It's time to blog.

Ok, hairlessness recap. I have alopecia universalis. At the age of twenty all my hair fell out over the course of three weeks. Every morning we would wake up to find the bed coated in a thick carpet of hair. I remember being quite bemused by the whole thing initially, and then having to wear a baseball cap to cover the bald spots, and seeing the absolute terror in my mum's eyes when we met up with her in Paris and she saw how bad it was. Later than summer I shaved the rest off. I think I was in shock as I barely remember how I dealt with it practically. Did I wear a hat all the time? A scarf? A little of both perhaps. Some time later that summer I bought an auburn shoulder length wig, because getting one that looked like my real hair, but pouffy and nylon and cheap was just too painful. I remember walking down Kensington Church Street with a bare head, trying it out, and having to turn round and go home after only a couple of minutes. I just couldn't face it. John, my hairdresser, is always asking my why I don't just go bare. "You have a nice head!" he says "Fuck them!" The truth is, I can't stand the attention.

I went to see posh incompetent dermatologist, who was very interested in getting rid of thread veins on the back of my hand, but had only steroids and trycyclic anti-depressants to offer. I took steroids and tricyclic antidepressants. Lots of steroids, for nearly two years. They made me fat and puffy and miserable, but the hair didn't come back. In fact, more fell out. I lost my eyebrows and eyelashes, and all the hair on my body. The posh incompetent dermatologist gave me horribly painful injections which made my eyebrows grow back for about a week. Then they fell out again. He sent me to a troll-like psychiatrist who told me I must have had deep-seated trauma when I was 8 (when I first lost a patch of hair). I couldn't think of any.

At some point, ever so gradually, I lost the assumption, then the belief, then the hope, that my hair would grow back. I didn't lose it quickly. I clearly remember not wanting to get married, because I couldn't imagine getting married in a wig. I didn't want to have a baby, and have photos of me in a wig. But soon enough, I invested in wigs that didn't make me want to kill myself, that made me feel a little more like me again. It was hard, doing that. It felt like an admission that this was permanent. But it was worth it too. And I went to Sophie, who gave me part of my face back. I love Sophie. Want eyebrows? Go to Sophie. Accept no substitutes. I am still desperately looking for something to give me my eyelashes back. If you've heard of anything, tell me.

Practicalities? I barely notice any more. I LOVE not having to shave, or wax or any of that business. I like my spookily smooth legs and underarms. I will never have a moustache. My "hair" looks better than my real hair ever used to, and I don't think people could guess. Yes, you will all think it obvious, I expect, if you meet me, but it's because you know already. What I think looks odd is the lack of those little fine hairs around the temples, where your hairline starts. It's too clean. I wear my wig all the time during the day, but my kids see me without it. I've shown my niece too (after her dad's chemo) but noone else. I feel vulnerable with no hair, like a sea creature without its shell. I get terribly cold in bed in the winter (and even now) and have to wear a hoodie or hat in bed and yes, it itches in the summer, and sometimes I just lift it up and have a scratch. People are endlessly unobservant, thankfully. I haven't noticed any ill effects of no nose hair, but I had to give up contact lenses because of the irritation having no eyelashes causes. That was a real blow. If I have to wear a swimming cap, well, I would go for one of those fabric ones. They're all the rage here. Though I must say, if I go somewhere I have to wear a swimming cap, the chances are, I will make up any old story not to get into the freezing verruca stew.

Feelings? I hate my eyes without eyelashes. I hate my pink, lashless lids. They look like raw meat and no combination of make up I have tried can mimic eyelashes. I would do anything to avoid that look. I tried falsies once, but they looked ridiculous without any real eyelashes to nestle into. The rest I'm pretty much at ease with, I think. About once every couple of months I dream that my hair grows back, but I don't rail against my bad luck. Would I prefer to have hair? Certainly. Am I distressed by my condition daily? No. Not at all. Sometimes it makes me more restless than others, and now is one of those times. I am wondering whether to go and see another dermatologist to see if they have any cunning eyelash plans. But unhappy? No. I mean, seriously. I'm not the one with the brain tumour am I?

Um. I just reread this post, and it would appear I have nothing to add to my position on alopecia since last year. Sorry. BUT YOU ASKED, INTERNET. (Both of you).

32 comments:

Iheartfashion said...

Your wig is utterly convincing; I would never have guessed it wasn't your real hair if you hadn't said. And I suspect the lack of eyelashes is a lot more noticeable to you than anyone else. There must be a solution. I do know of one woman with alopecia who painstakingly applies false lashed every day, to realistic effect, but I'd be far too lazy myself.

The Subtle Rudder said...

Oh, hullo. Just discovered you, and did one of those stayed-up-too-late marathons where I read back over your blogposts, like a monkey at the crackbar, pressing for treats. I assumed it was alopecia, but hadn't found the confirmation post yet.

I did see the recent one where you revealed pieces of yourself in pictures. And I saw you had tattoed eyebrows, so I've been meaning to write (funny what gives us a sense of connection). I have what amounts to half-brows that end disconcertingly in the middle of my eye. Without make-up, it looked like I meant to do it, like some poser trying (and failing) to be alterna-tuff. I finally discovered what they call "permanent make-up" here in the states, (although you'll know that "permanent" means less than a year, and it's expensive to keep up with). Joy! Revelation! Suddenly, I did not look more arch and wannapunk than I felt. So...yes. I get that part. Thank god for the Sophies!

Bath bun said...

As Iheart said, your wig is totally convincing and I've not noticed the lack of lashes. I think I'll have to look harder next time. I also have a male friend over here with the same condition and I have to say I just thought he was a baldy like my husband (although he's a lot younger) and it was only when his wife told me he had no hair that I noticed, but I did have to look hard.
I also have to admit to a touch of misplaced jealousy - wigs seem such a great solution to bad hair days.

Wife in Hong Kong said...

My Dad was one of five siblings and one summer two of his brothers lost all their hair aged 7 and 11. It was always said to have been linked to Polio but I am inclined to believe it was trauma of living with their crazy mother (my Grandma). The older brother was bullied at school and suffered terribly and was always painfully shy but the younger brother incorporated his baldness into his personality and always wore funny hats and used to entertain us by wiggling his ears. He turns 80 this year and has barely aged in the 40 years I've known him. The non-ageing is a real positive spin off, one I'm sure you're aware of. When we are all fretting about grey and thinning hair you will remain beautifully constant.

Lulu LaBonne said...

You sound as though you've adapted to this amazingly - I remember thinking about you and trying to put myself in your hairless shoes when I first read about your alopecia.

Cassandra said...

Jaywalker, as you have no doubt considered every option under the soleil (exactement) already, my thoughts will probably amke you want to SCREAM.

Appropriately enough, that is of course a Michael Jackson track as I was going to suggest - permanent eyeliner. Why not? Then you would always have some definition around the eyes and could wear false eyelashes as well. (I look like a PIG without eye make-up myself, being sallow dirty blonde, and have often thought how FAB permanent eyeliner would be...

dragondays said...

I envy you on the hairless legs part of alopecia - I am a lazy slut who gets away with reduced leg shaving in the winter, but now the non-summer is arriving and I can't live in jeans for ever, the New Husband is ranting on about blunt razor blades and empty cans of shaving foam ...

kathycastro said...

I really really want to try Latisse, which is a glaucoma treatment that has recently been licensed in the US for cosmetic eyelash growth enhancement (an unintended side-effect of the glaucoma treating). The only drawback is that if it touches your eyes, it can make your eye colour darker, but I think I can live with that as I have blue eyes and I wouldn't mind navy. I used to have really nice lashes, but over the past two or so years they have thinned out dramatically, so that even the most mega mascara gives me only a hint of the lashes I used to have. If I can talk my dermo into prescribing it I will report back, perhaps we can smuggle you a tube? Worth a shot, surely? I think MTFF said she was trying it out a couple of weeks ago, can we get a report, Motherhood?

Jools said...

The permanent eyeliner might be worth a try. Other than that I would appreciate the hairlessness, having spent most of my life exfoliating.

Most people have something going on don't they? I have RA. Easily fatigued. Something is hurting most days.Taking meds that are probably rotting my internal organs....

Worst thing about this condition is that I can't wear heels! One of my toes is fused. Honestly, this shoe thing probably pisses me off the most. xo

screamish said...

jeez. I was just about to post comment about your hairless nostrils too and read this just in time....i am always doing stuff like that. I aksed a friend the other day why her father wasnt visitng her for Easter with her mother totally forgetting she told me 6 months ago that he had died. I am selfish troll. How disconcerting to be told you have a deep seated trauma from childhood...particularly when they're wrong...glad you gave up the steroids, dont think they ever did anyone any good....

mothership said...

Latisse report:
I am on week 3, which is when it is supposed to show the first signs of working, though it takes up to 16 for the full effect to kick in BUT I think that it actually is doing something.
I am lucky enough to have pretty long eyelashes anyway - always my best feature - but lately had noticed that they were not as thick as they used to be (needed 3 coats of mascara for my signature crumbly eye look rather than just the one)
However, have very spindly eyebrows that have to be filled in with powder and pencil (I NEED SOPHIE!)

I think my eyelashes are getting a bit longer and possibly thicker - notice that I am getting black specks on my eyelids again as I did in my 20's when I put my mascara on (this could be due to sagging eyelids, though)
BUT, the real proof, for me, is that my eyebrows look a bit fuller, and some of the hairs are longer and have to be tamed with clear mascara (Dennis Healey, anyone?)
I will update in a couple of weeks.
All the women who work in my Derm's office have been using it for months and they all swear by it. I will ask him if he thinks it would work for someone with Alopecia. It warns against putting it somewhere you wouldn't want hair, so perhaps don't put it on your upper lip in a small square shape?
I VERY much doubt you'll have a hard time getting your Derm to prescribe it to you. Mine just sold it to me via the receptionist, you didn't even need to ask him. They just want their cashola.
Sorry for endless comment!

redfox said...

I was here the first time around, but never tire of hairlessness stories, so thank you for the indulgence. It is a testament to your chicness, elan, and convincing wig (and also perhaps to my own derangement and hairy legs) that I am overwhelmingly filled with envy over your perfectly hairless legs and armpits.

The array of very different and convincing eyebrows on display at Sophie's website are truly impressive. What a brilliant thing to be a genius at.

A Woman Of No Importance said...

I think you are very brave, JW, and you are right to put such things into perspective so well as you do...

I have one leg shorter than the other, which means that since my early twenties, I have been unable to wear kitten heels, sexy shoes with sling-backs, or sandals that have no backs to them, as there is nothing to hold in the one inch rubberized heel insert I must wear or else I get crippling back trouble and fall off pavements dramatically...

But at least I have my bottom two legs left!

Good luck in finding the eyelash solution, and like everything we do, I would suggest that others probably never notice - It's like the glasses thing - No-one notices if you are wearing them or if you're not! I could also function pretty well as a bat without mine, my bad eyesight is perilously close to danger, danger!

pplongstocking said...

I have tried to find whether you posted a picture of you in your wig somewhere on your blog and can't find any, which is a shame as wigs are my profession.

I was interested in your comment about your wig not having the fine hairs along your hairline that give it that natural look.

Although part of my job entails wigmaking, my strength is my wig dressing.. If you are interested you can see my first of three wigs I am doing for a window display on one of my recent posts.

But I know a lady wot is bwillaint at wigmaking!!

She is a true artist and her wigs are beautiful. She makes for the film industry mainly, but has a wealth of experience under her belt.
If you are ever interested in finding out more about her, I would be happy to make enquiries for you.

I have also just started a new job which has specialist wig salons within the company for the public. The work they do is amazing. I work mainly on show wigs so what I do is slightly different, but since starting my job, I have seen some wonderful results from the hair stylists in the salon, who cut and style the wig to suit the client.
I'm sure your hairdresser does this for you too, but I wanted to mention it anyway.

A friend of mine got alopecia when we were in our 20's. She has only just recently started to wear a wig but spent many years being free with it.

I admire her, as I admire you, For being upfront and pragmatic about your experiences.
Sharing is caring.

P.S I do agree with an earlier comment about lining your lids with some eyeliner. Bobby Brown does a very nice gel eyeliner in a jar. This can be applied with a fine brush (couple of goes will get you used to it), and some nice false lashes with a fine weft where you glue to, individual lashes are great too and easily sourced.

Voila!

Mya said...

I think your wig looks fab - very elegant and sleek and grown up and clever. Choosing wigs must be quite an art. You could so easily get it wrong, I'm guessing. I hope you find a solution for the eyelashes - I won't take mine for granted anymore.

Mya x

Z said...

Oh fuck, darling, you just brought tears to my eyes. I wish I could really give you my hair, which is nice hair in spite of my great age, but I'm not sure I could adapt to hairlessness as graciously as you have. You make me realise I could if I have to, however.

Miss Whistle said...

Dear Jaywalker,

Today I have been pondering the fragility of life, as one does on Mondays, and then I started to read this post. I find your writing disarmingly honest and so fully of humanity, that it makes me weep. It sounds so trite to say "thank you for sharing" but I live in Los Angeles, so thank you for sharing. I'm so grateful to have come across your blog.

Love,

-- MissW

katyboo1 said...

I agree with the others. your wig looks fab and totally like real hair.

I also envy you your hairless state, as a woman who has to shave her legs and under arms every day, has a bikini line that left unchecked would come down to my knees and eyebrows that need doing every other day. It's hideous, and I am now at an age where I spend my life staring suspiciously at my upper lip waiting for a fine moustache to appear.

Mrs Jones said...

Hah, now, see, I bet you're really pleased that me and redfoxtailshrub bullied you into doing that post. You got LOADS of sympathy AND a really good contact in the wig world plus readers who weren't aware before now know why you don't have to depilate your nostrils - it's win-win all round! Go, me (and redfoxtailshrub, of course).

redfox said...

Oh dear, I've just realized: I never can remember to get straight my Blogger identity and my normal one, and it keeps insisting on reverting to the blogger one first, so I just wanted to be clear, redfoxtailshrub and redfox, all is me. Both versions think you are fab.

Meanwhile, my wv is "mensti" which I think sounds all too much like a pathetic/creepy attempt to rebrand having one's period. "Sorry, I've got my mensti." Ick! Though actually with a spelling adjustment, maybe I kind of like it as an adjective for the state of feeling menstrual. "Ugh, no, I'm feeling far too mensty, I'd probably kill someone."

tragicanon said...

mum just used to put on lots of thick black eyeliner when she lost her lashes, but i don't now about permanent solutions.. don't they do eyelash implants? or am i make-believing i read that somewhere?
hair is a funny thing isn't it? people spend so much time and money trying to get it off their bodies..
still, from the tiny bits of pics i've seen on here, your eyebrows look great and i can't remember ever thinking you wore a wig even though i'd read the last post about the alopecia.. it just didn't occur to me to connect the two..

elohssanatahw said...

I looked at your picture again at the Bat Cave. You are a lovely woman with absolutely gorgeous children and healthy, nothing else matters really.

monk said...

I have little to add, except that you are hairless elegance personified, but the wv is pityup, which is too good to miss. I imagine it's what bluff yorkshire types say when you get too maudlin. "pityup lass, 'appen there's plenty more fish int' pub"

Am I right?

parlezvouskiwi said...

I love your attitude. Inner beauty gives off outer beauty and if you are comfortable with how you look, so will others. Go you.

AliBlahBlah said...

My Aunty and Uncle lived in Brussels for over 10 years and we would visit all the time and I was TERRIFIED of the trams and the knowledge that they would not stop for a petrified 6 year old.

As for the alopecia, I have barely there blonde eyelashes which always make me look incredibly tired, and I once had my barely-there blonde eyebrows tinted but just looked really pissed off for 3 months until it wore off.

This being California I know two people who have tattooed eyeliner and it looks brilliant, so that does sound like a good suggestion.

GingerB said...

I am impressed by your ability to write about this without a boatload of baggage. I have psoriasis, as in heartbreak of, and I wrote about it recently but could not do so without self deprecating humor. So I won't cry!! People are not as unobservant as I'd damn well like them to be. Kudos to you JW, and your wig is fab.

wv: exessesp too much ESP can ruin a good mystery

GingerB said...

I had to post again to share this WV: grubcom JW's snail's plan for the internet

Jaywalker said...

Iheart - gah, I can't imagine that level of devotion. Also too lazy.

Subtle Rudder "monkey at the crackbar". You are lovely.

Bathbun - that is their great advantage. People often say enviously how my hair always looks good. Ha.

Wife in HK - you think? But think of those elderly ladies with wildly inappropriate glossy chestnut locks. I will look insane.

Lulu - pah. It was never my crowning glory.

Cassandra - do you think it can look good? I have never seen it done well, but by looks of some other comments it might be possible..

dragondays - it's great. Definite bonus.

Kathycastro - hey! Are you all moved in? How is it? We miss you. Yes. Really want to try Latisse. Mothership is going to ask Dr Slime if it's suitable.

Jools - exactly. If it wasn't this I'd be being miserable about something else. Poor you.

Screamish - you are totally not a selfish troll. You may admire my hairless nostrils to your heart's content.

MOthership - thank you so much for this. I am really keen to try it.. has to be worth a go (also YES. Sophie is amazing. Nigella goes and everything).

redfox - I fear the chic is an on paper thing only. In person I am more dishevelled. And stained. Yes, I thought it must be you. There can't be 2 red foxes on one blog, surely?

Woman - yes, 2 legs are great. Bonus!

pplongstocking - wow that is SO interesting and useful. Thank you so much! Can I email you? Wig lady! Yay! Will try and get the Bobbi Brown liner when in London.

Mya - In the end I went for something that is pretty much exactly like my hair used to be. Or how I used to want it to be but it never was, and every time I left the hairdressers I looked like Myra Hindley. No more!

Z - you are so lovely. Kisses.

Miss W - it is an absolute pleasure. It is nice to talk about this actually, for once..

Katyboo - ah, thank you darling.

Mrs Jones - you may give yourself a congratulatory cup of tea and a biscuit. You have my best interests at heart xx

tragicanon - they do on nip/tuck, don't they? But I think they have to take them from another hairy part of your body, which in my case = nowhere.

elohssanatahw - yes, they are lovely. LOVELY. AND I got to feed an elephant and I have the nicest readers in the world. The children should lend me their lashes though, that would be nice.

monk - pityup. Or it could be like a croggy. I'll take thee down the Brewers Arms Lass, hop ont' back I'll give tha a pityup.

parlezvouskiwi - why thank you! You are lovely.

AliBlahBlah - the trams, they are driven by devils. Devils on day release from devil mental hospitals. You were right to be scared.

Ginger B - your post made me laugh so much. READ GINGER's PSORIASIS POST PEOPLE. It is brilliant.

Ali said...

I wish I were able to offer something on the lashes front. I can't imagine how annoying it must be but then my lashes are my only redeeming feature, I would be a troll without them.

I have gone with a shaved head a few times in my life. It is very freeing. At least you always have a good disguise up your sleeve if you want to venture out as someone other than you, although for what purpose I couldn't say. Just ignore me.
Thanks for the sharing.

Simon said...

Interesting stuff. There are lots of consequences I'd never have thought of (being cold in bed).
Glad to hear that you're at peace with it.
I'm currently entering the stage where hair disappears from my head and starts appearing elsewhere (nostrils, ears), necessitating the pruchase of all sorts of ridiculous clipping/trimming/plucking devices.

florrie said...

My daughter has alopecia aurealis which at 16 is heartbreaking. She has been taking steroids and is on a very low dose but as soon as she is weaned off them it starts all over again. She also now has half an eyebrow which very stubbornly refuses to regrow. They are going to give her one more run at weaning off the steroids and if it doesn't work they want to give her injections. I am concerned about the injections and the effect they will have on her and I am concerned about the hair loss and the effect that will have on her too. I think what I am really asking is anything you can tell me about the injections that you had? Not words of comfort - just facts. The unknown is so much less scary if you know something about it.

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