Tuesday, August 26, 2014
Alopecia, Hair Loss and Hair Replacements: My Story (part two)
Yeah. So we see how well that whole “I’ll post tomorrow”
thing went, didn’t we?
At any rate I am writing now, continuing to talk about my
experience with alopecia, hair loss and hair replacements.
As I said in my last post, there was a point in time when
wearing ponytail-style hairpieces was just fine. Until it wasn’t. I didn’t have
enough hair to support the weight of hairpieces comfortably and the amount of
my exposed scalp increased, making the combs used to attach a hairpiece
unbearable.
This year I knew I needed to commit to doing something. Of
course, there were several options.
I could just shave my head and be bald. In fact, whenever I
talk about the process of getting a hair replacement one of my friends always
mentions this fact. I know it’s well-intentioned. None of my friends want to
see me spend more money that I have to. But I quickly decided that wasn’t an
option for me. Having hair is about as much a part of my personality as my
smile or the colors I like to paint my nails. I definitely think there are
beautiful bald women out there. And I think they are beautiful bald women, in
part, because their choice to go bald is in line with their personalities. Such
was not the case for me, so I journeyed on.
Now I had investigated hair replacement systems before. In
the past I always used cost to justify not getting one. The truth is I just
didn’t know very much about them and what I didn’t know scared me. So for a
while I thought maybe I’d just get a regular, run-of-the-mill wig. While there
are cute wigs out there, however, they made me perpetually nervous. At some
point there wouldn’t be actual hair for a wig to attach to. Would I have to
wear one that gripped my scalp so tight I would have constant headaches? Or
maybe I’d just go around in fear all the time that my hair would come flying
off.
Then there are those thoughts folks don’t want to admit out
loud. Like sex. Yes, sex. Some men pull hair. I’ve always been averse to that,
but probably only because I knew it doesn’t take much to completely dislodge
hair from my head! There’s also the worry about swimming, dancing vigorously,
riding a rollercoaster or a speed boat or doing any of the many, many, many
activities in the world where hair moves a lot.
Plus, even the best wigs wear out pretty quickly if you don’t
maintain them. And I figured if I’m going to maintain something, why not
maintain something that works with my lifestyle.
So after some research I found El Dorado Hair ReplacementCenter, not far from me in White Marsh (a suburb north of Baltimore). I made an
appointment for a consultation and went in, as I usually do, probably
ill-prepared. But thankfully God gave me an “insightful gut.” I have never been
one to write out questions before I meet with people. I sort of wing it. I don’t
know if it’s my experience as a writer (and someone who interviews people
frequently) or just unrecognized bravado, but that method usually works out for
me.
At any rate, when I went to El Dorado I met with the owner,
who is named Marty. Interestingly enough Marty himself was wearing a hair
replacement and I did not know! (He let me feel the netting line on his scalp.
I always feel comforted by people who use their own products. I’m not sure why.
Perhaps I feel like they are truly invested? Plus it was comforting to know
that he’d coped with hair loss just like I had.
Over the next hour or so, an interesting thing happened.
Marty started interviewing me! He asked all sorts of questions, ranging from
the routine (“About how often do you go to the gym?”) to the ultra-personal (“When
you are in a room full of your peers, do you think you are less smart, as smart
or smarter than them?”)
Now me not being the most perceptive person in the world
(when it comes to myself) I didn’t realize what he was doing at first. I
thought this was just small talk that wouldn’t end! But after a while I
realized that he was trying to get to know me. He confirmed it by telling me he
calls the process “discovery” and explained that hair is an extension of the
personality. In order to get a sense of the kind of hair (style, length, color)
to recommend he needed to know something about me: how I think, how I view the
world, what I like to do.
That impressed the hell out of me! While I’m a pretty good
writer, I am not so great at envisioning things so I had absolutely no idea
what I wanted in a hair replacement. It’d been so long since I wore my hair
down. I did know what factors I found important though.
1.
I wanted to look like a black person (any time I
had a weave folks always mistook me for other races).
2.
I wanted to be able to adjust the style (either
by nature or by my situation I am a chameleon. I don’t want to look the same
every day!)
3.
I am an attention seeker (something Marty picked
up on very easily during his discovery) so my hair had to have some sort of “wow”
factor
With that he allowed me to ask the million and two questions
I’d thought of while we went through discovery. Here are a few that I asked:
1.
Is there some sort of association or
accreditation that makes you qualified to make a hair replacement for me?
ANSWER: Yes. There is an American Hair Loss Association and within that there
are standards for handling both prosthetic (wig) hair replacements as well as
surgical hair replacements and Marty was actively involved in that community.
2.
Are hair replacements covered under insurance
policies? ANSWER: Sometimes. I am currently appealing my insurance’s policy,
which only covers hair replacements (called either partial or full cranial
prosthesis) after chemotherapy.
3.
How much do hair replacements usually cost?
ANSWER: Good ones are usually in the thousands, but prices vary depending on
length of hair, style, color, etc. Mine cost about $2,500. I was required to
make a 30% deposit and the rest was due when the piece was complete.
4.
What are hair replacements made of? And are
there any distinctions between the various types? ANSWER: They can be either
synthetic or human (mine is human). The human is a bit more versatile in the
ability to style but can degrade faster.
5.
How will this thing be attached to my head?
ANSWER: There are two methods – taping and bonding. Both methods require you
keep your replacement on for stretches of time (as opposed to removing them
daily). With taping, you use a strong, double-sided adhesive tape to affix the
piece to your head. With bonding, a special medical-grade bonding glue is attached
directly to your scalp that will hold the piece in place for several weeks at a
time.
6.
What if I order a hairpiece and don’t like it?
ANSWER: Marty did stress my down-payment was not refundable (it basically
covered the cost of hand crafting the hair replacement) but that my contract
stipulated that payment was due upon acceptance of the final piece. He said he’d
never experienced a person flat-out not liking their hair replacement but he
said they have options to restyle it if tweaks are necessary.
7.
How long does this thing last? ANSWER: Most
well-kept hair replacements last about six months, a year at the most. El
Dorado has a monthly payment plan you can get on that includes yearly
replacement of your piece, but Marty also suggested checking to see how often
my insurance might cover replacement.
So…this is turning into a whole little series! But I think I
have one more post coming. That’s about the actual logistics (what they did to
my head, how they made the wig, how I take care of it, etc.). Stay tuned!
Labels: alopecia, hair loss, hair replacements
Friday, August 22, 2014
Alopecia, Hair Loss and Hair Replacements: My Story (part one)
So…this happened recently. And since I realize I’ve not gone much
into my hair journey I will stop a moment and tell the long (boring) story.
The official start of this story is in 1998. But I think it
starts a little earlier. I’ll explain why in a moment.
I had this FABULOUS auburn hair weave. Now on me an auburn
weave is just asking for cultural confusion. I lived in Montgomery County at
the time and even the large Latino population thought I was Latina from time to
time (while my mom’s family name is Fernandez we mostly came by that name by
way of imperialism).
Anyhoo, as I was removing the weave, I noticed a dime sized
chunk of hair missing toward the crown of my head. I didn’t think much of it. I
thought maybe I’d pulled some hair from my head in removing the weave. I
carried on.
But it progressively got worse. And I progressively denied
it. I’m not sure how to explain how I did that except that I did. My past has
given me the ability to make very existent things non-existent. It’s a survival
mechanisms that helps in some ways and hurts in others.Over the next 10 years or so I began a male pattern hair loss which means a circle at the top of my head was becoming bald. Amazingly I did not seek medical advice for this for more than a decade! I am generally distrustful of doctors and medical institutions (ironic since I placed myself in a situation where I have to interact through my weight loss surgery). That is to say that when I am sick my first inclination is NOT to call a doctor. I usually try to push through it.
But eventually I did go to the doctor and the doctor told me…approximately nothing. They ran no tests, they gave me no explanation (other than the diagnosis of alopecia areata which, in my estimation, translates to “you are losing your hair and we’re not 100% sure why.”). The dermatologist did tell me that the hair follicles in the area of my scalp where I’d already lost hair were dead. And so the hair would not grow back. Lovely.
SIDEBAR: Remember where I said I think this dates back earlier? I had an experience but I can't prove it had anything to do with my ultimate hair loss. In my junior year of high school I went to get a perm at a beauty school. The student technician put the perm solution in my hair...then promptly disappeared for about 45 minutes! Most black folks know that stuff is not supposed to stay in that long. After about 20 my head was on fire and I begged someone, anyone, to wash it out. That was met with claims that I must have a sensitive head. My mom arrived 45 minutes in when I was trying to "man up" and demanded someone do something. They did and my hair did not fall out then, but I did have recurring sores on my scalp for quite some time. Then the hair started to come out. Thankfully the sores (which bled often for years) disappeared once the hair started falling out. Although we signed a disclaimer saying we know my hair was being done by students and releasing them of most liability, a court later found the school grossly negligent and I got a small settlement that helped me pay for my first year of college. Back to our regular story...
Now the same part of me that allowed me to stick my head in the
sand for many years also prevented me from really grieving my hair too much. I’m
fairly resilient that way. So I wouldn’t have hair that grew out of my head.
Instead of being sad about that I set off to figure out how I could have hair. And thus began my long
career of wearing hair pieces.
Those of you who met me within the last 10 years or so have
seen me in hairpieces. They are always ponytails of some sort. I dabbled in
wigs but found I didn’t like too much hair around my face. It wasn’t too much
of a bother to wear these hair pieces. They are cheap (most of the ones you’ve
seen range from $10-15), accessible (true fact: there are four beauty supply
stores in walking distance of my house) and they allowed me versatility. I’ve
never been one to commit to looking one particular way.
So if I was happy with the hairpieces, what led me to get
that thing of beauty you see in the photo above?
Well, several things. First, as I lost more and more hair,
hair pieces became more and more uncomfortable. The stress of the weight of
them was a lot for the tiny bit of hair I had to pull back to support them.
Plus it was getting harder to conceal my scalp. Lastly, most ponytail hair
pieces are fastened with little combs. This isn’t problematic if you have hair
between those combs and your scalp. I did not. Imagine little metal spikes
digging into your scalp all day. Not fun!So this year I finally decided to get a hair replacement.
I have a lot to say about the process – what makes a good
candidate, the cost, the actual logistics of getting one. I’m trying to
motivate myself to blog more so I’m going to save this for tomorrow, when I
hope to pick up where I left off.
Labels: alopecia, hair loss, hair replacements
