Blogging Friends.... This month--on
August 28th--marks one year since I created Minuscule is good! !! Where does
the time escape to.... Outer space?! And what a year this has been!! What. A.
Year. Because, starting with "Monkeys in the Woods" and ending with
"I'm Free!! Free Like My Hair!!", I have written twelve--count them, TWELVE!!--fictional
books!! Wow. Just. Wow!! Love you later.
Sorry for posting this one day late. Ugh, I feel like I've broken a promise!!
I have folliculitis decalvans. {F.D.}
I was diagnosed--if memory serves me
and it seldom ever does--about one year
ago. The first pill form of
medication which my dermatologist, Dr. E., prescribed that I swallowed was
seemingly effective in controlling furthermore hair loss. Yet. It began to turn my skin blue. So. I am now swallowing medication number three, and have yet to hear Dr. E.'s professional
opinion on whether or not it is even effective,
as my appointment was rescheduled. Meanwhile. My scalp has
been itchy, itchy, itchy lately, and I
am seemingly continuously shedding hairs.... But--so far!!--I'm not bald yet!!
Note. Although many parts of this book were, of course, fictionalized, I
infused myself {Plus some very personal, not to mention, true, thoughts,
feelings, emotions, humor, and experiences!!} into this story's main character,
Victorya!! That was entirely intentional!! And therapeutic!! Now. There is a
weird line in this specific story that goes like this. "I'm Free!! Free
Like My Hair!!". Allow me to explain. A few years back, I was playing
Legos with our eleven-year old cousin. My character's black Indian braids kept
popping off her head. So--being the oddball that I am--I kept announcing
"I'm free!! Free like my hair!!" Who'd have thought that merely a few
years later, this weird line would prove itself as being prophetic....
"Creating beautiful mosaic artwork" with the broken, shattered pieces of my lifelong dream to be an author....
For my dear Blogging Friends who have children. You may print
this story off and read it to them!!
I am alright with that!! Enjoy!!
"I'm Free!! Free Like My
Hair!!"
Sometimes, God sees in His plans to
connect one person who is going through a Life-changing event with another and
then, almost magically, they become Kindred Spirits. For it is, quite often, an
unlikely event. And nothing short of beautiful. This is what happened to
Victorya. God saw in His plans to connect one person who was going through a
Life-changing event with another and then they became Kindred Spirits!! It all began
when Victorya's hair mysteriously fell out on top of her head leaving behind an
oval-shaped patch of scarred skin. However. Let's start in the very beginning....
Victorya is a thirty-year old woman. She
has beautiful long straight natural dark brown hair. About four years ago, her
head started feeling very, very, very itchy.
So she scratched it. Unfortunately, Victorya's primary care physician, Dr. Papelbon, misdiagnosed her at first. Sadly. Meanwhile,
every time she scratched her head, brushed or combed those dark brown locks, and
lathered shampoo into it, hairs freely fell out. But Victorya did not know that
any of this was happening. Then one morning, after she had showered, her
husband, Samson, noticed the patch of scarred skin.
"Vickie," he said, "Babe, I
do not mean to point out any of your physical flaws.... But.... Did you know
that there is a bald spot on top of your head?"
"What?!" replied Victorya,
panicked. "I have a bald spot?! Where?!"
Victorya found a small mirror and vainly held
it up to an even bigger one that hung on their bathroom wall. She gasped. Samson
was right. Unfortunately. Because, there, boldly showing itself, was an
oval-shaped patch of scarred skin. Victorya--ever the Drama Queen--felt her
heart stop for several seconds. Then she panicked. Finally, Victorya quickly
covered up her oval-shaped patch of scarred skin with remaining hairs.
"Oh my gosh!!" whined Victorya,
"I lost my hair?! How?! Where did it go?! My bald spot looks so
ugly!!"
"Oh babe," Samson said,
"It is not ugly."
Victorya made yet another appointment
with Dr. Papelbon. He part her hair and looked at the oval-shaped patch of scarred skin. Dr. Papelbon scowled in confusion.
"I am sorry, Victorya," he said, "I do not know why
you experienced hair loss."
Still confused, he wrote up some recommendations for several dermatologists, or skin doctors.
Then she drove back home.
The next morning, Victorya made an
appointment for a dermatologist named Dr. Cunningham. Then she waited one week.
On the day of Victorya's scheduled appointment, Dr. Cunningham {Who has
sandy-colored hair that she pulled back in a ponytail, is short, and wears cute
eyeglasses!!} part Victorya's dark brown locks then looked at the oval-shaped patch of scarred skin. She scowled in confusion, as well.
"I am going to perform a needle biopsy on your
head," Dr. Cunningham began.
"What is that?!" Victorya
nervously asked.
"I am going to cut a small circle of
skin from your scalp on the bald spot," explained Dr. Cunningham,
"Then I will stitch that area up. Afterward, we are going to send the
small circle of skin from your scalp away to our laboratory so it can be tested."
"Why?" asked Victorya.
"Because this way, we can find out
what caused your hair loss," answered Dr. Cunningham.
"Alright," replied Victorya.
And that was exactly what Dr. Cunningham did. With Nurse Fairlight's help,
she shot some numbing medication into Victorya's head on the oval-shaped patch of scarred skin. Soon her entire face felt puffy.
With Nurse
Fairlight's help, Dr. Cunningham performed the needle
biopsy. Then Victorya waited for its test results. She waited. And waited. And waited some more. With each passing
day, Victorya became more and more worried about the unknown test results, as
though she were expecting a cancer diagnosis!!
At last, Dr. Cunningham's office called!!
Victorya has folliculitis decalvans. {Also known as cicatricial alopecia. Tufted folliculitis. And scarring alopecia.} There
is very little information available on this rare disease. Nobody has yet to
find a cure. And, what with the few medications or treatment options available,
not all drugs work. Truth be told? Victorya's hair will never grow back on top
of her head. Ever. And, what's worse? Victorya will most likely lose even more
hair.
Dr. Papelbon misdiagnosed my ailment? thought Victorya, So.... If I
were diagnosed with folliculitis decalvans sooner, would I have been able to keep my hair?
"I highly recommend that we give
your scalp several steroid injections," said Dr. Cunningham during an appointment.
"Okay," Victorya desperately said,
"Please, please, please do
anything to keep my hair. Anything. Because
I really do not want to go bald!! I will look like a freak!! I really, really, really do not want to go bald!!"
So Dr. Cunningham prescribed a bottle of
medication and gave Victorya's head several steroid shots. They hurt!! And with every steroid shot, blood oozed out of her
head. However. Victorya was in denial about the reality of her hair never
growing back. At first, anyway!! For Victorya absolutely refused to believe the
truth of this news.
"So," she asked over and
over and over after several follow-up appointments, "My hair will not grow
back?"
"No," answered Dr. Cunningham, each time a sorry expression written on her face.
Nearly one year of follow-up appointments,
trying different medications {One which worked!!} and countless steroid shots
later, her head started to feel very, very, very itchy again. So she scratched it. And scratched it. And scratched it. And scratched it some more. Just
as before, every time Victorya itched her head, brushed or combed those dark
brown locks, and lathered shampoo into it, hairs freely fell out. But this
time, Victorya knew it was happening. One evening, she held in her hand a
single strand of hair with crusty skin still attached to the end.
"I am shedding worse than Rainbow
does, Sammy!!" joked Victorya, "With an extremely bad case of fleas!!
And a hotspot!!"
Samson laughed.
"I remember when we adopted Rainbow
from that shelter," he said, "There she was, three years old--our Beautifully
Unique 'blond'-furred German Shepherd/Golden Retriever mix--but the poor girl had an extremely bad case of fleas and
hotspots!!"
Victorya nodded in agreement.
"After taking Rainbow to the veterinarian,
Dr. Davenport, for a check-up, I rid our little girl of those nasty pesky fleas
and then treated her dry crusty scaly hotspots!!" she added.
Victorya paused. Then she smiled big.
"Hey, I am a dog!!"
Just then, as if by cue, Rainbow--who was
lying comfortably on their living room couch--scratched her pointy ear, and loose fur
flew everywhere!!
Soon, it was time for another follow-up
appointment with Dr. Cunningham. Again, she part Victorya's hair and looked at the oval-shaped patch of scarred skin. It had
spread. Victorya's oval-shaped patch of scarred skin was slowly becoming bigger.
As a matter of fact. It was not oval-shaped anymore. Therefore, Victorya had
lost even more hair. Feeling helpless and defeated against this disease called
folliculitis
decalvans, Dr. Cunningham sighed deeply. There was
an expression of regret written on her face.
"I have seen this happen before in
other patients," she said sadly, "Everything seems to work as planned
and then, for some reason, their folliculitis decalvans relapses, meaning everything starts all over
again. The itchy scalp. Crusty/scaly skin. The hair loss."
"So, it is like an endless circle," said Victorya,
"Of embarrassing hair loss."
"Sometimes," replied Dr. Cunningham, "Or it could simply
be the change in medications, as not all drugs work. Remember? I can prescribe
a different medication, if you would like. And give your scalp several steroid
injections. Because. I do not feel quite ready to give up on saving your hair,
yet!!"
"Tell me the truth, Dr.
Cunningham," pressed Victorya, "I'm running out of treatment options
for my folliculitis decalvans, aren't I?"
"Yes," answered Dr. Cunningham, "We are."
"Well...." Victorya bravely said,
"If my folliculitis decalvans is known to relapse, not all drugs work and I
am running out of treatment options, then.... Maybe.... Maybe I should stop
being your patient?"
Dr. Cunningham looked up from her
paperwork. She was listening.
"There is absolutely nothing you--or
I--can do about this disease," continued Victorya, "Right? Like it or
not, I am still most likely going to lose my hair and go bald. So.... I have
been doing a lot of talking with my husband, Samson, praying, thinking, soul searching
and growing since my last appointment here. We both agree.... That the time has
come to let it go."
"So you are saying 'goodbye'?"
asked Dr. Cunningham.
"Yes...." answered Victorya,
"I guess I am!! You are a wonderful dermatologist and doctor.... And friend!! I was so very lucky to have
found you!! And Nurse Fairlight!! Thank-you both so much for everything!!"
Tears welled up in Victorya's, Dr.
Cunningham's and Nurse Fairlight's eyes.
"Take care, okay?" said Dr.
Cunningham.
"I will," replied Victorya, "I will!! So I guess I'm officially
part of the Rare Disease Club now...."
Then she drove back home.
After a while, Victorya's folliculitis decalvans
progressed. Her patch of scarred skin had now spread
so much that she could no longer hide the bald spot with remaining hairs. But
without medication or treatment, this is to be expected. So Victorya wore cute knitted
hats and baseball caps as she grew her already long hair out. But only while in
public. Because at home, she proudly showed off her patch of scarred skin. For
Victorya had finally learned self-acceptance!!
"Sammy...." she announced to
her husband one Saturday morning, "I think it is time.... For you to shave
my hair off!!"
"Really....?" asked Samson,
"Are you sure about this, Vickie?"
"Yes!!" answered Victorya,
"I truly am!!"
Samson found the combs, scissors,
electric shaver and little mirror. Victorya sat in a kitchen chair. And this
was it!! Because, after all. As soon as Samson shaved off Victorya's beautiful long
straight natural dark brown hair, it will most likely never grow back again.
Ever. But Victorya was not in the least bit nervous about this!! She actually looked
down at the tile floor and watched her hairs fall!! Strand by strand by
strand!! For her desperate Drama Queen thoughts, feelings and emotions from one
year ago were long over!! Because Victorya had at last reached the beautiful
freeing place of "I don't care"!!
"I'm free!! Free like my hair!!" announced Victorya as her locks were
being shaved off.
"Sammy," she asked, "Will
you love me when I am bald?"
"Of course I will!!" Samson answered
without hesitation, "I'll love you young, old, skinny, fat.... Or bald!!
For the rest of our lives together!!"
Sammy is such a sweetheart!! thought Victorya, Which is only
one of countless reasons why I love him!!
"You know how when somebody cuts or
dyes her locks, it is considered a new hairdo?" Victorya asked, smiling.
"Yeah....?" said Samson.
"When you are done shaving my head,
it will be a new not-hairdo!!" Victorya joked, "Get it?! A new
not-hairdo?"
Samson laughed.
"Hey!!" said Samson, smiling,
"This is sort of ironic!! My name's Samson. And I am shaving your hair
off!! Like Delilah did to Samson in the Bible!! But shouldn't your name be
Samson?!"
Then Victorya laughed.
"What are you going to do with all
this hair I just shaved off your head?" asked Samson after he finished, "Keep
it for memory's sake?"
"No," answered Victorya, "I
have great plans for my hair!! I am mailing it to Locks of Love as a donation!!
Because, if I cannot have my hair, then somebody else should!! Besides. What
good will it do to keep my hair? This way I'll be making a huge difference in
someone's Life!!"
"Vickie!!" exclaimed Samson,
"What an incredibly neat, wonderful, unselfish, heartfelt idea!!"
Victorya looked at her reflection in the
little mirror. She is now officially completely bald with scarred skin for a
head. Yet, Victorya smiled!! Then she swept up her hairs off the kitchen floor
and mailed them to Locks of Love that exact afternoon!! Everything felt so very
good!! Because finally, Victorya is at peace with this uncontrollable
situation!! Having Samson shave off her hair. Most likely losing it forever.
And donating her straight natural dark brown hair to Locks of Love. Yes,
everything felt so very good!!
Sometimes, God sees in His plans to connect
one person who is going through a Life-changing event with another and then,
almost magically, they become Kindred Spirits. For it is, quite often, an
unlikely event. And nothing short of beautiful.
Victorya regularly volunteers at her
state's children's cancer hospital. Which she's been doing for ten years now.
There Victorya has met several strong, brave, and courageous young children.
One morning, she walked into Nicole Jane's hospital room. She's three-years old
and has sky blue-eyes. Nicole Jane's hospital room bed is always covered with
baby dolls. Her very favorite one? A bald-headed baby doll that had its hair
cut off!! They are inseparable!! Nicole Jane goes everywhere with that bald-headed
baby doll!! To doctor's appointments. When they give her shots of medication.
To bed. Even during surgeries.
Then Victorya saw it. On Nicole Jane's
usually bald head was a beautiful straight natural dark brown hairpiece!! And Victorya
knew. Somehow. She could feel it in her heart and soul. Because on Nicole
Jane's head? It was what used to be Victorya's own hair!! Her eyes suddenly
welled up with tears. She could not hold them back!! For Victorya silently felt
a strong sense of connection with this three-year old cancer patient!! Because
they are Kindred Spirits!! Victorya then pulled off her black and white
baseball cap {That, ironically, said "bald is beautiful"!!} and
showed Nicole Jane her scarred skin of a head.
To which Nicole Jane smiled....