thejessence

The energy of the mind is the essence of life. – Aristotle


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Silent Symphony and Magic

Have you ever sat in silence and just listened to the noise? The ticking of the clock, the deep breath of a puppy fast asleep, the wind as it winds through rows of houses, the creeks and pops of a shifting structure, the blood pumping through your ears, all creating the symphony that literally is the sound of silence.

I doubt many of us experience silence any more between our smartphone addiction and the constant compulsion to be entertained.

For almost a year now, I’ve been preoccupied with the ‘Outlander’ book series by Diana Gabaldon, which mostly takes place in the 1700s and leaves me endlessly wondering how I would function in a time outside of my own.

The necessity of entertainment is replaced with the essential function of living. Binge watching Netflix is replaced with making sure there is food for dinner. Everyone has a job to do, and time is not to be wasted.

Luckily, I don’t have to worry about churning butter, boiling water to wash the clothes I’ve been wearing for the last week or even spending 30 minutes trying to light a fire.

I do have to be concerned with not eating or wearing the same thing two days in a row, and keeping up with everyone else’s daily “struggles” on social media. #FirstWorldProbs

Even my dogs’ purpose would shift from serving as household enjoyment to hunting and aiding in the home’s survival. However, it’s difficult for me to picture two miniature dachshunds doing anything except squeaking a fuzzy toy and snuggling on a pile of blankets.

It’s almost terrifying to imagine a world of silence without the technology and bustling lifestyle we’re used to today. How does one survive without contacts to correct your vision, a microwave to heat up a bite to eat or a television to sustain a level of noise to mute the silence?

I wouldn’t know the first thing about baking bread from scratch, butchering a chicken, gathering edible plants or building a fire without a match or lighter.

I can tell you how to turn on the XBox with voice commands, flicking the light switch to the ‘on’ direction, which button to press on the microwave based upon the food you want to eat and how to update your status on Facebook. I can’t tell you how any of this stuff actually works.

“Any sufficiently advanced technology is indistinguishable from magic.” -Arthur C. Clarke

 


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With A Suitcase and One Foot On the Train

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Outside of my hotel window, looking out on the Mississippi River in New Orleans. Photo by: Jessica McBride

I sat on the carpet surrounded in darkness in my hotel room in New Orleans, in front of my floor to ceiling window, listening to House of the Rising Sun and eating peanut butter M&Ms.

Luckily I had come back with something other than the putrid pee smell of Bourbon Street and peddlers selling their various wares.

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My fried fish po’ boy, chicken and sausage gumbo and tabasco infused mayo. Photo by: Jessica McBride

I guess there’s a reason gambling men went to New Orleans. The first moments into the French Quarter made me want to run back to the shelter of my hotel and not venture out until it was time to fly home.

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Nothing more French than a fleur. Photo by: Jessica McBride

But, the street performances were beautiful, and my French connection to the city was enough to take hold. OK, and the beignets.

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By the way, Cafe Du Monde is open 24 hours. Photo by: Jessica McBride

In the picturesque ideal of southern charm and big city vices, I also visited the World War II museum. Highly recommended by the way. Spend the extra money and see the 4D presentation of the war narrated by Tom Hanks. After 30 minutes, you’ll come out head high, chest out, bleeding red, white, and blue with tears running down your face and a new perspective of the stars and stripes.

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Photo by: Jessica McBride

As in all my other travels, there is too much to see and so little time. I think that’s a good thing. It’s a draw to a place where the experience pulls you back for the long lasting memories.

Once you catch the travel bug there’s no cure for the syndrome other than a regular dose of adventure, sight-seeing, and voyages. It’s also extremely contagious, just ask a few of us sufferers.

Seeing how others live and view the world and life gives you an appreciation and understanding that is indescribable. It also makes you value and miss the home that you have built with those you love. I think that’s the most potent component of seeing the world.

Sometimes we need a reminder to appreciate the ranch dressing and Dr. Pepper back home.

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A canon, a Scot, a Catholic church, in a historic French city that only a beautiful American sunset can bring together. Photo by: Jessica McBride

 

 


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Thirty Going On Eight

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Photo by: Jessica McBride

Inspiration is all around us, and yet we fail to recognize it with all of the distractions of our daily life. Our minds are struck with life’s subtle sparkling nuggets and in a moments notice vanish as if they never existed.

Every day I’ve taken a mental note of rarely noticed details that move me to inspiration, and when the finger tips hit the keys the panic pulsates within my veins. I close the laptop and end the idea that captured me.

Recently, I find myself frustrated at life’s possibilities. Not regret, just a childlike desire to do, go and be. Interesting how hitting the big 3-0 leaves you at a point of reflection, adventure and pursuit.

Every door and window is open to you as a child. It’s almost as if living under a canopy with the sides unhindered to view. Today you’re a cowboy. Tomorrow you’re an astronaut. Possibilities never cease and are never out of reach.

I think as an adult we build walls and are pushed to close doors and windows, leaving two or three open as careers and escapes. Why?

Is it a societal push? Is it an internal mental push so the mind can deal with the pains of being an adult?

Puzzling. I think I prefer the child’s view.

I was asked the other day what the next 10 years hold. I smiled, and said something amazing! Though I’m no where near ready for 40, I do know that I want the next ten years to be full of adventure, happiness and inspiration.


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Fake and Fancy Free

READER ADVISORY: Some photos and descriptions in this story might be disturbing to some individuals. Use discretion when choosing to continue. Previous blog posts leading up to this story are located at the bottom of this post. It is suggested that the previous posts be read first for a full understanding of this post.

 

To finally catch up to the present day, I will go back to February of this year.

That was my last dermatologist appointment. A week before, I sunk down beyond frustration.

I felt like nothing was working. I was the girl with the headband. What I thought would help me grow my hair was turning into a monthly fiasco of prescriptions and doctor’s appointments with no light at the end of the tunnel. I didn’t see improvement.

So, I told myself that this was it. I was possibly ending any and all treatments for alopecia. I was tired of having my hopes up of one day not having the bald spots. I was done. I was ready to shave my head.

The doctor encouraged me not to give up hope just yet. She suggested taking photos again to show any progress. She said we would take another look at the next appointment and evaluate our options. I received a couple more steroid injections and would come back in a couple of months.

I paced back to my car with my eyes to the ground. To keep the tears from coming I decided to go ahead with my progress pictures.

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Photo by: Jessica McBride

As you can see, my scalp hates injections.

My head was throbbing. I sat in my car looking through all of the previous photos I had taken. The depressed fever set in and big, hot water drops rolled down my face.

I was so tired of being in limbo. Maybe I would have hair. Maybe I would shave my head. Maybe I would look at options at a later date. No answers. No when, no why.

Journalists don’t deal with unanswered questions very well. In fact, a no comment would’ve been better for my emotions.

I decided to make myself options since my body was taking them away. I threw the car into drive and went to Target.

I grabbed three different color scarves and checked out. I sat in the parking lot and taught myself how to tie them around my head via YouTube.

With a quick Google search I was on to my next stop.

I wasn’t real sure what to expect when I walked into the wig store, but I knew that I had to leave for the better.

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Photo by: Jessica McBride

The lady helped me look at options, and answered my questions. I tried a couple on.

I went short. I went long.

I went blonde. I went brunette.

I wore bangs. I went curly. I went straight.

The possibilities were endless. I enjoyed that.

Eventually I could buy several. I could be a red-headed wild child on the weekend, and an elegant brunette during the week. Maybe even a dumb blonde on holidays.

Who cared that people would know it was a wig. That wasn’t the point. This was something that I could do before and after if I decided to shave my head. This was the ultimate dream of being able to be blonde, curl my hair and change my look with no consequence and no commitment.

 

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Photo by: Jessica McBride

I decided bangs weren’t my thing, and I knew that I wouldn’t be able to afford multiple wigs at once. Just a heads up, wigs are VERY expensive.

This would be something I would have to build up over a long period of time, which would also mean that I wouldn’t be able to wear the wig on a daily basis because it would wear out.

I never thought in my younger years (HA!) I would one day purchase a wig for something other than for Halloween or to goof around.

I settled for something more natural to help with the transition for myself and those around me. You’re welcome.

When I returned to work, I encountered something that I hadn’t even realized had been absent from my life for the past four years. People told me my hair looked nice.

… and cue the tear roll.

It wasn’t anything I ever thought about. It was a change I hadn’t anticipated. It was bittersweet. I thanked them, and corrected that it was a wig and not my natural hair.

The questions flew, and it was relieving to discuss. Most of my co-workers were aware. Most that were unaware of my alopecia are now. The conversation was comforting.

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One person asked why I purchased it. I happily explained that I needed it for my mental and emotional health.

Then they took me back several years to when I told them I had alopecia.

When I tell people, I typically show them. The visual element is very impactful to some people, and though I don’t want sympathy, many times it helps them to know I’m not lying, or exaggerating.

When I was initially sharing this piece of me with this person, I made a comment about my bald spots being weird, or gross, or scary.

The person repeated their response at the time, that it was me and that it wasn’t weird or scary to them. It was physical and not part of my personality or heart.

Acceptance.

The biggest thing about alopecia that I can relay to anyone is the emotional pain and anxiety associated with it. Sure, it sucks to not have hair, but after it’s been gone for awhile it becomes the physical portion of you just like a scar or glasses.

Because so many people do not know or understand alopecia makes it somewhat embarrassing, difficult to explain and gut wrenching that your body struggles to make hair.

Additional layers of being a female with a “beauty” issue and that there is no cure and not much known about the auto-immune disease tear into a vulnerable mind and create an anxiety that is difficult to communicate.

I am constantly worried that my bald spots are showing. I am constantly worried that the wig might blow off in the wind. I am constantly worried that people won’t understand.

And while I shouldn’t have these worries, I do.

It’s been four years since my first bald spot reared its ugliness, and I’m still fighting.

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Photo by: Jessica McBride

I took my pictures at the one month mark for the dermatologist. We’ll see what she says next week.

 

 

For clarity on the story above, please read the blog posts below.

Word Vomit

And Then It Appeared

Radius, Diameter and the Curious Spread

Shimmering Dresses and Comb Overs

The Monster Within

Peach Fuzz But Not Peachy Keen

Beauty and the Beast

25,000 Strands Lost

1 + 1 = 2

Bandana Bandaid

Reflection

My Hair is Full of Secrets

Follicles of Hope

Show Me The Progress


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Show Me The Progress

READER ADVISORY: Some photos and descriptions in this story might be disturbing to some individuals. Use discretion when choosing to continue. Previous blog posts leading up to this story are located at the bottom of this post. It is suggested that the previous posts be read first for a full understanding of this post.

Every six months, an eye appointment to make sure the Plaquenil wasn’t destroying my eyes. Having to sit in a dark room and click a button when I saw the squiggly for five minutes per eye.

Every six months, an appointment with my regular doctor for blood work. Changing the amounts of my thyroid medicine and prescription Vitamin D.

Every three months, an appointment with the dermatologist. A smile that the bald spot was improving and a, ‘see you next time.’

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Photo by: Jessica McBride- How I feel when I go to the doctor. Luckily I don’t get stabbed like this on my arm.

It gets old fast. Poked. Stabbed. Drained. Same routine. Two pills a day and another once a week.

For a while I was convinced that I was very close to being normal again. Then the days would come and remind me that I was still far from it.

Comments about grey/white looking hair coming from my head and that I should do something about it. Comments that went a little like, ‘I always can find you in the crowd, I just look for the headband.’

My pride was shot. That’s not at all what I wanted people to see.

At the next dermatologist appointment, I was told that they assumed the other patient was back to normal because they hadn’t seen her since. Great for her.

My alopecia on the other hand, had stopped improving. It was time to try a combination of things. An old man at the clinic that is renown for his work with alopecia and hair cases came in. He observed me through a magnifying glass while the other doctor patted my head.

They decided steroid injections was the next step.

If you’ve never had an injection on your scalp I don’t recommend it. It is painful. If they’re injecting an alopecia spot, it’s not just one go. It’s several.

Small liquid pockets settle just under the scalp, resembling the mosquito bites you used to scratch as a child until they’d swell up to form one large lump.

The initial pain subsides in 15-20 minutes. Then a headache sets in for the rest of the day.

I knew this was going to be several rounds of pain. I just hoped that it wouldn’t be without results.

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Photo by: Jessica McBride

For clarity on the story above, please read the blog posts below.

https://thejessence.wordpress.com/2015/07/02/word-vomit/

https://thejessence.wordpress.com/2015/07/02/and-then-it-appeared/

https://thejessence.wordpress.com/2015/07/15/radius-diameter-and-the-curious-spread/

https://thejessence.wordpress.com/2015/07/27/shimmering-dresses-and-comb-overs/

https://thejessence.wordpress.com/2015/08/02/the-monster-within/

https://thejessence.wordpress.com/2015/08/16/peach-fuzz-but-not-peachy-keen/

https://thejessence.wordpress.com/2015/08/22/beauty-and-the-beast/

https://thejessence.wordpress.com/2015/08/30/25000-strands-lost/

https://thejessence.wordpress.com/2015/09/07/1-1-2/

https://thejessence.wordpress.com/2015/09/12/bandana-bandaid/

https://thejessence.wordpress.com/2015/11/17/reflection/

https://thejessence.wordpress.com/2015/12/05/my-hair-is-full-of-secrets/

https://thejessence.wordpress.com/2016/01/06/follicles-of-hope/

 


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The Public Perception

I saw this video shortly after it came out. My initial instinct was to share immediately on my blog, but I hesitated.

One of my biggest battles with alopecia is not only helping people to understand, but also their perception of what it’s like to not be able to grow hair and the loss of control that person feels as a result.

I have debated since I was diagnosed whether I should shave my head and rock the bald or opt for a wig. I continue to change my mind on almost a daily basis, but I know that at some point because there’s not a cure that I will ultimately reach for the clippers.

What do you think?

By the way, massive props to Buzzfeed’s Becky Harris for sharing her story.


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Follicles of Hope

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Photo by: Jessica McBride

READER ADVISORY: Some photos and descriptions in this story might be disturbing to some individuals. Use discretion when choosing to continue. Previous blog posts leading up to this story are located at the bottom of this post. It is suggested that the previous posts be read first for a full understanding of this post.

Every day, the step into the shower is a frightening experience. The refreshing tingle of shampoo produces apprehension. I close my eyes and gently massage my scalp with my fingertips, hoping I don’t pull out too many strands of hair.

Rinse. Examine the damage.

It never fails that I’m pulling hair from between my fingertips. To keep it from clogging the drain, I plaster it in a pile on the wall for disposal later.

Now for round two. I lightly smear the creamy conditioner into my hair.

Rinse. Open my eyes and hope for the best.

Again, I’m unweaving the long strands of hair released from my head from between my fingers.

It’s almost as if I’m counting each strand as I survey the damage.

With each wash or brush, I dread the horrifying affair of finding another spot. Each hair lost is another potential sign that I will never be rid of the baldness.

Early in 2015 I had raised my count to three spots. At my next dermatologist appointment, I was crushed. This saga was going to be my future. I would never have a full head of hair again.

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Photo by: Jessica McBride

I think the doctor realized I was almost to the point of giving up. Without details, she mentioned another case she was treating. A female patient had a large bald spot on the back of her head that was continuing to expand.

The patient had come in for several months, and was hesitant to take Plaquenil to help. She had shared a bit about my case with her, that I had suffered from alopecia for three years and that I was having success on Plaquenil.

Success. I wasn’t certain she was still describing my case, but it still gave me a little hope.

The patient had decided she would try the “miracle drug.” I smiled.

When I got home, I compared some of the pictures I had taken and relived every advance and every set back for the past three years. Then I looked in the mirror.

I wasn’t fully recovered, but the progress was evident. The hair farm on my head was producing, slowly, but my scalp was yielding fruit.

At my next regular doctor’s appointment, she noticed the improvement as well.

I would give it a year. I would evaluate the progress then before I considered shaving my head again.

I would try and kill the pessimism with the optimism that there was someone else suffering just like me that I needed to give hope to.

For clarity on the story above, please read the blog posts below.

https://thejessence.wordpress.com/2015/07/02/word-vomit/

https://thejessence.wordpress.com/2015/07/02/and-then-it-appeared/

https://thejessence.wordpress.com/2015/07/15/radius-diameter-and-the-curious-spread/

https://thejessence.wordpress.com/2015/07/27/shimmering-dresses-and-comb-overs/

https://thejessence.wordpress.com/2015/08/02/the-monster-within/

https://thejessence.wordpress.com/2015/08/16/peach-fuzz-but-not-peachy-keen/

https://thejessence.wordpress.com/2015/08/22/beauty-and-the-beast/

https://thejessence.wordpress.com/2015/08/30/25000-strands-lost/

https://thejessence.wordpress.com/2015/09/07/1-1-2/

https://thejessence.wordpress.com/2015/09/12/bandana-bandaid/

https://thejessence.wordpress.com/2015/11/17/reflection/

https://thejessence.wordpress.com/2015/12/05/my-hair-is-full-of-secrets/