I'm sort of in the process of just working on what is speaking to me at a particular moment. That's very common for me right now. --Bruce Springsteen, January 9th, 2014

Sunday, August 3, 2014

"I'm Free!! Free Like My Hair!!"

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....