Further than Before- Pathway to the Stars

by Matthew Opdyke

  “Progeria, we all have it pulsing through our bodies in one way or another, but somehow the way it affects her, well, it just isn’t fair,” Her Dad had mentioned at one point in their conversation with a wavering voice, one that indicated that he was most certainly trying to hold back tears. “She is such a wonderful young girl, but her condition is beginning to show. How do we explain to her that her life will be so much shorter and different than that of her friends at school? She starts Kindergarten soon. What can be done? What can we do? We’ve traveled a lot through the years, we have seen all kinds of doctors, we have tried to give her a full life, and none of the doctors seem to have any good answers.”

  After hearing this, Erin breathed in, breathed out, and mustered her strength as she walked down the stairs the rest of the way to reveal the fact that she had heard everything. Her parents looked at her, wiped their eyes, and smiled when they saw her.

  “It’s okay Mom, Dad. It’ll be okay. I promise I’ll make the most of life, however long it may be. You both have so much love in your hearts, you have done so much for me, taught me so many things, made my life rich with experiences and the exploration of our environment. I am a lucky girl to have you two as my parents. I know what is happening to me, but together we’ve done so well to capture so much out of life despite it all. Thank you for being wonderful parents.” Erin then gave each of her parents a hug and went off to bed.

  Ever since that night, Erin thought frequently about some of the major changes that had increasingly occurred as the months passed her by. Some of these changes had taken form and had shown themselves not too long before her kindergarten school year began. As the months progressed so too did her condition and likewise the effects on her physiology. She had dismissed the fact that her cells were aging prematurely and decided to reflect on time, as she dove into the pleasant moments spent going over letters, numbers, and colors with the rest of the children.

  While she couldn’t keep up with the other kids as they played on the jungle gym during recess, she could keep up with them mentally and did well in class. The art activities were among her favorites and anything related to the sciences seemed to call out to her even more. She loved learning how the Universe worked. She appreciated biology, neurology, and physics. She would watch each day for advancements in technology as the news would play out. At times she would watch specials with hope for some miracle to come out from within the medical industry while watching educational documentaries. Due to her viewing of sophisticated material, Erin was at the top of her class. Despite all, she enjoyed the social atmosphere while understanding the Cosmos.

  Kindergarten had started for Erin Carter in August of 2009. The three children who had grown up with her and happened to live on the same block had accompanied her on their first day of school. Erin appreciated the fact that their school was only a block and a half away, so they would walk there and back with ease. Most of the time, they walked together. Their parents happened to be good friends, so the children took turns sharing their homes to play and spend a few hours together. Those moments were beautiful, as she recalled, at least before school began.

  Still, time sped by for Erin, so she hadn’t taken into account the loss of hair on her head until a few months later. It was on the second Friday of November of 2009 that would be the last time she would be able to fashion her hair back into pigtails. The other children were surprisingly kind about what she was going through since none of them had brought it up or made gaffs, but she could hear the worst playing out in her mind, she knew the nature of children her age. She wasn’t vain, but she still wanted to feel like a princess just like any other girl and wearing her hair in pigtails was something that made her feel like one.

  The temperature on her way home from school was average for the time of year that day, so she wore a quilted jacket. But unfortunately, at one point the wind blew in from the northwest and her jacket’s hood had blown back. She recalled as the wind stood still for just a moment and she couldn’t forget as though everything else was in sync, the time had all of a sudden stopped for the first time in a while. She could still feel the moment that her last lock of long hair brushed against her neck on her right side as it made its way down to the ground. When she looked down, there was her pigtail.

  Luckily, she hadn’t felt any pain. No tug. No hair pulling. It was simply gone—released.

  From that time on and until the rest of her hair fell out completely, she wore barrettes of sparkly pink and other seasonally-based colors on what remained of her hair to bring out the kind of childhood creativity and femininity she had grown to adore through her years in life. In her own manner of originality, her hair was her own outward expression of beauty. Thus, upon what few medium and short-length hairs she had she had worn barrettes to match what she was wearing until she could no longer wear them anymore.

  It was a week before Christmas break and it had been fairly cold, so she wore a red stocking cap to go with her green eyes and green and red Christmas outfit as she walked to and from school. She wore the stocking cap just in case the wind would blow her jacket hood back, which would then leave her almost barren head exposed to the chilly breeze. When she returned home that Thursday, she sat down on the ottoman next to the fireplace and took off her cap. She then looked inside and saw her sparkly green barrette sitting in it trustily holding her final remaining shorter hairs. She was pretty sure this was the last time hair would grace her head.

  She was actually impressed that her barrettes had done their job so well. After feeling her barren head, she envisioned the reality of it. To Erin, it was as smooth as silk and warm. She realized her dome was completely devoid of hair. For a moment, her tonsils swelled, her tears welled up, but she shook off the urge to cry and went to the kitchen to grab a glass of water. She drank it, felt refreshed, and watched an episode of Battle Star Galactica. Her favorite character was Kara Thrace, or Starbuck, who always had grace and an iron will despite all thrown her way.

  At her young age, Erin knew that crying might have its therapeutic purposes, but on this particular occasion, it wouldn’t change a thing, so she didn’t see any point in it. She immersed herself in something she enjoyed instead of allowing herself to wallow in self-pity. She would cry if she lost a family member or a friend to the angelic call of the afterlife, but she was different, and she knew it, so instead she would watch a favorite show or a scientific documentary or go to the bathroom for the fourth time that day and brush her teeth again, since part of her condition caused her teeth to gather plaque more quickly. She found a way to appreciate her new look and to enjoy and embrace her emerging and modern reality.

  She could have worn a wig, but she chose not to.

  Erin recalled as her parents brought her to Omaha the following January to show her a variety of wigs. In their own way, they were trying to help. These wigs had a splendid and beautiful quality to them, with so many colors, styles, and details. She knew or could sense that there had been quite a few kind individuals who had donated their locks to help others. They had done this so that others could benefit from the peace that would settle in as societal expectations of beauty were met. Erin knew there were noble reasons for their intentions and she was grateful.

  To Erin, beauty was not just a shallow aspect of reality. People felt through their senses and their minds, that was how they experienced the world, and when they felt what they felt there was a lot that went with it. People have emotions that travel to the core of the mind and impact the rest of their physiological and neurological health. Thus, it was important to Erin that people had a sense of appreciation for who they were and how that affected others. For many, these wigs would provide them an opportunity to live a life of acceptance and transition to a new reality that would meet those expectations. Meeting their own personal beliefs would impart them internal peace, a sense of elegance felt within and express to the world before them an internal visual—and she was on board with that idea.

  While Erin appre
ciated her parents’ efforts and the need for acceptance, she preferred the simplicity of baldness. Even though she was a child, she possessed the maturity her physiology seemed to express, and there was a bit of merit to the hair loss she endured. She took everything in with pause and stride, with consideration for others, and with grace. She appreciated the beautiful world around her. Given her predicted short lifespan and no matter what would happen down the road, she would take in the sights, the sounds, the scents and the splendor of the environment around her. If she couldn’t express her own prettiness in the way she had envisioned it, she would embrace her reality. Kindness was first and foremost to her, so she expressed herself well while taking in the magnificence of the world with love.

  As that moment tapered away from her memories, she went back to one day in late September of 2009, when she realized that her face was no longer full. Instead, she saw the sleek aerodynamics of her slenderizing features making it, so she could walk a little more briskly. Her skin no longer was full of plasticity, but rather than let that get her down, she enjoyed the freshly-scented oils her parents had given her to prevent cracking and bleeding. Her cheeks were no longer plump, the wrinkles in her face began to show and throughout her body her skin was left sagging and greying, yet this seemed to become commonplace for her, and she would show strength despite all. Her nose was no longer youthfully wide at the base but had gathered together for a narrower, extended, and more aged appearance.

  In her mind, she looked like what she had imagined her great-grandmother would have looked like if she were still alive. Erin loved how her father described her great-grandmother, so she took this thought as a wonderful compliment.

  At school, she was very perceptive of how her young friends and the other school kids treated her. While they were still nice, she noticed that they began to maintain their distance more and more. It wasn’t their fault and she knew it, so she forgave them. Still, it was somewhat lonely at times to see groups of kids, especially those who she’d known for years, playing together and with others as she was by herself on more occasions than not. Instead of allowing herself to become overwhelmed with a sense of frustration, she felt in its place the appreciation of being afforded her more time to think in peace.

  Life was a pleasant spectator sport, and with Erin’s exceptionally keen sense of intuition, she noticed how the adults she would meet used to tell her how adorable she was. Now, their compliments drifted more toward her personality or her emerald green eyes, and no longer toward the rest of her features. This was fine since Erin preferred to talk about ideas, the sciences, and things of substance anyway, and the fact that they now looked her in the eyes a lot more brought her more of a sense of shared conversational involvement.

  She continued thinking during each of her recess periods that day of her moments growing up and how things were before school began.

  Her parents had done so much to do right by her, to give her love and an environment filled with meaningful experiences. She recalled trips to museums, visits to the art centers nearby, the walks in the various parks around town, familiarizing her with the various businesses that kept the town running, camping trips hovering over a campfire prepared by her Mom and Dad, and looking up at the stars.

  Her parents taught her so much in so little time. No matter what challenges life brought, Erin was grateful for the fact that her parents had pulled every stop to make the whole kit and caboodle as pleasant and normalized as possible given her condition. Thus far, there had been very few answers to what could be done for a cure for over-active progeria or the pain as it set in from her early on-set fibromyalgia.

  Despite her young age, and despite the fact that Erin could read into people very well she still appreciated them. She could pick up on their sentiments, their expressions, and their emotions, but she also had a strong sense that she was who she saw in others. Her parents had discussed how proud of her they were many times in private, but they had also discussed the progressive nature of her condition, so they were considerate yet concerned.

  The doctors had, during their many visits and trips to distant clinics, tried to talk of healing, helpful acute, and organic medicines, and they seemed to dance around the subject of early aging whenever she was in the room. She still listened and knew what they were talking about. They were trying their best to help her with the information available to them, but with so much to study, it was easy for the doctors to get lost in the murky details and the convoluted clutter of information. No matter where she and her parents went, they received very few direct and quite a few vague answers from the doctors as they humbly hung their heads low and expressed their sorrow for her condition.

  While Erin excelled in her Kindergarten school work, and recess had not been the opportunity for physical exercise that so many of her peers seemed to appreciate it for, she made the most of it and still enjoyed the many occasions for contemplation they provided, just like today. Contemplating life, while watching the butterflies go from flower to flower, or looking for rainbows after a rain, looking for a flower to pop up among the weeds, or even gazing into the nearby farmland to view the cattle as they grazed seemed to help the time pass by even more pleasantly, but recess was just never long enough. Erin felt, however, that a person could still treasure wonderful moments within their hearts and minds, no matter where they were.

  Erin pulled herself back from her thoughts and drifted back toward the day. Her last recess of the day was over, so when the school bell rang she went back into class.

  It was the last hour of school when to her surprise the teachers and students had put together a party for her. Just as she entered the classroom they yelled, “Surprise!” and sang “Happy Birthday” with smiles. The teachers had coordinated with her parents and the parents of the other students to provide, share, present, and divvy out a beautiful cake to her and her classmates. They gave her a large birthday card signed by every teacher and every student in the room. Inside, she lit up and felt very grateful for the wonderful people of Kearney, Nebraska. She went home that day with her three friends from the neighborhood, holding balloons, and wearing a gift—a beanie in her favorite color.

  Wednesday, March 24, 2010, turned out to be a beautiful day, accompanied by three friends, wearing her new pink beanie, and she skipped home while whistling in high spirits. Erin forgot about any pains as she went home, which would normally have come along with all of her physical activity. When she opened her door, she was surprised yet again, as she discovered that her classmates and their families had gathered together and had somehow snuck over to her house to wish her a happy sixth birthday at home.

  In the face of her physical condition, her mind was every bit that of a six-year-old when it came to so many aspects of life, yet with an extra love for the study of science, balance in discipline and fun, and most especially when it came to playtime and birthdays. While she was unusually smart for her age, and while she often times hid it well, she wanted to play like the others her age had and that she did, until the pain crept in.

  Erin had been raised with self-restraint and good manners though, so when she knew it was time, she went around the room and thanked everyone, smiled her award-winning smile, and then she found a polite way to dismiss herself from the room when the pain was just too much to bear. She didn’t want to make a scene, so, just like she would do at any other time; she showed gratitude for the efforts of her teachers and fellow students. Once everyone left her house and her parents had given her the prescribed treatments, she prepared for bed.

  With her last bit of strength that day and before she went to bed, she expressed to her parents, “I’m six now, thank you for bearing with me. I love you Mom and Dad, you do so much for me. With such a beautiful world, let’s make this year great!” and she hugged them both. Erin rested well that night, at peace with the world, and a strong determination to make the most of what life had given her.

  Chapter 20: Erin Carter, Section 2

  It had been s
ix years since Erin had been born. Raised in her mother’s hometown of Kearney, Nebraska, she had expressed often how she appreciated the farmlands and the starry night skies.

  Erin Carter’s mother had reached the end of the day, Erin’s birthday, and just as they had taught Erin, each day they would each, and in their own way, take time to meditate and contemplate life.

  Beverly Carter would take a little time before going bed to ponder on her life and the lives of her husband and daughter. On this particular occasion, she thought about how she met Erin’s father, Daniel, in Atlanta, Georgia, when she was just twelve years old. She had gone to visit her aunt who had moved there a couple of years prior. Beverly had loved and missed her aunt, and after some convincing, her parents let her fly down to spend the summer there. It was on her very first day of arrival in Atlanta that she met Daniel.

  After she arrived in the airport, she freshened up in the restroom, made sure her blonde locks were neatly pulled back in a ponytail, and then went to the luggage area where her aunt met with her and picked her up. She settled into her aunt’s home for the summer.

  It had been a particularly hot day that day and Beverly recalled how on the way to the house in her aunt’s car she had seen an ice-cream parlor. She made no mention of it at the time, but she did make a mental note of it. When they arrived at the house, they brought in her luggage, had some watermelon, and drank some water. After unpacking and some enjoyable chit chat with her aunt, about Atlanta, Georgia, and their nice winters, she asked her aunt if she could go to get some ice-cream since the shop was only a few blocks away from the house.