*Fiction by Danielle Watkins*
The season was wintertime. The night, silent as the snow that fell into shimmering piles on the ground, seemed calm. Standing by the door, Jenna, wearing her mother’s winter coat and gloves, wasn’t planning on going far. Just to the giant tree that felt like Christmas. To sit in the biting cold, the unmerciful wind licking at her dry skin, seemed like a relief.
Yet, she couldn’t bring herself to open the sliding-glass door. Her shaking hand hovered above the doorknob for a long time and hot tears blurred her vision. But then she saw something scampering in the fresh snow, defiling its purity with tiny footprints. Finally looking up at her reflection in the door, Jenna saw the girl once again. The girl stared back with frightened, unblinking eyes, slowly turned around, and trekked into the peaceful snowfall. Her ghostly shadow left loud footprints that eventually faded away into nothing.
Jenna didn’t want to be nothing.
******
The monster came slowly. It crept into the sinews of Jenna’s mind, telling her what seemed like truths, “That doorknob isn’t safe. You shouldn’t touch it.” It was easy to ignore the voice at first, but eventually, the voice materialized into a creature that controlled her every action.
It came when Jenna was in fourth grade. She and her best friend, Samantha, were romping around in the snow during recess. A bunch of boys were playing King of the Hill; one of them ripped off his coat and proclaimed he didn’t need it in the winter, only in the summer, because he was a man now. Everyone just laughed, but not in a mean way. It was funny, especially when the teacher came over and tried to climb the hill after the ‘man’ refused to put his coat back on.
Samantha grew bored and asked, “Want to make a snowman?”
“Oh, sure,” Jenna replied, “but after I show you how many husbands I have!” She whipped out her glove, which was a sickly purple with several painted rings sewn around the fingers.
“Is he one of them?” Samantha giggled and pointed to the boy on the hill.
But Jenna wasn’t listening. Where was her other glove? She was sure she had it. Frantically, her eyes scanned the snowy field; it was too bright and the light hurt her eyes. She shielded her eyes with her naked hand—it only reminded her of what was missing.
“What’s wrong?” Samantha asked concerned.
Jenna couldn’t breathe. She instinctively felt for her scarf wrapped around her neck. Was it too tight? Why couldn’t she breathe?
Gasping, she looked up. When had she fallen? She lifted her hands toward the sky; they became two different shadows. One dark and concealed, with fingers spread wide. The other bright and vulnerable, limp against the powerful star we call the sun.
******
“I want those!”
Grandma was taking Jenna shopping for her sixth birthday at a candy store attached to an antique store. They sold vintage candies, like Razzles and Lipstick Taffy, as well as newer brands, like Reese’s and Skittles. The antique store varied from intricate wooden boxes to Red Sox memorabilia. Jenna had pointed to the neatly stacked Milky Ways; she liked them because they were simple. Just chocolate and caramel. Nothing fancy, just sweet, gooey goodness.
“Okay, honey, but you know you can pick something else out too, right?”
Smiling, Jenna picked up a Milky Way and lead Grandma into the small corridor that connected to the antique store. There were several wooden figurines denoting different seasons and occasions, such as “Christmas,” “Caroling,” “Birthday,” and “springtime.” Jenna especially liked the mother/daughter figurine. The mother clasped hands with the daughter; their patterned wooden skirts flowed in the imaginary wind. Then, a pair of gloves caught Jenna’s eyes. They were a royal purple and they were bejeweled with small faux rubies. The jewels were supposed to represent rings, one on almost every finger. Jenna instantly thought of the Disney movies she watched so often. What Disney princess could claim four princes? Perhaps Snow White, but maybe the dwarves don’t really count.
“I want these gloves, Grandma! Is that okay?”
Grandma smiled and said, “Of course.”
Jenna smiled too.
On the way home, as Jenna happily chewed on her Milky Way, she didn’t hear the missed call from the doctor on Grandma’s flip-phone and she didn’t notice the sadness in Grandma’s eyes.
******
The cluttered dollhouse bothered Jenna, so she began to organize the house by room. Her hand hovered over the bedroom, hesitated, and then moved toward the kitchen. The kitchen was easier to clean. Sure, it could get extremely messy—eggshells broken on the floor, dirty dishes in the sink, empty cereal boxes on the counter—but it could always be fixed. The bedroom, and those who inhabit it, can usually leave. Unless you’re sick and stuck in bed. Unless you fall asleep forever. Unless you’re Grandma.
“Does that bother you?”
Jenna turned around and looked at Dr. Hays. She wondered if he grew up on a farm and if he had cows that mooed at bales of hay.
“I just like to organize the rooms,” she responded, “because my dollhouse at home is neat. Except for the Play-Doh stuck in the mailbox, but that’s because my brother, Cam, made me do it.”
“I see. Well, we’re going to have your mom come in now so we can all talk together.”
“Okay!” Jenna exclaimed as she turned back to the slowly improving dollhouse.
After Dr. Hays talked to Jenna’s mom, he said goodbye and they went on their way. As they were leaving, Jenna saw a boy from her class. His name was Jerry and he always misbehaved during class. One time, he ran out of the classroom all the way to the front entrance of the school. Running past the principal’s office, he broke free and everyone from the classroom could see him sprinting outside. The principal ended up chasing him, heels and all. All of the students became distracted and watched in envious fascination of Jerry’s escape. No one wanted to be like Jerry, they just wanted to be free.
“Hi Jenna!”
Blushing, Jenna waved hesitantly. Why was she in the same doctor’s office as Jerry?
Meanwhile, Dr. Hays’ next patient destroyed the order Jenna worked so hard to instate into the dollhouse, instead leaving it in shambles.
******
When Jenna first stepped into the middle school, she didn’t remember it. She was sure she didn’t want to remember it because she knew she had, in fact, been in the school before.
It was a private tour offered to her and Mom by the principal. Jenna hadn’t gone to the sixth grade orientation because she wasn’t sure if Samantha was going. And if Samantha wasn’t going, well, then there was no point. Although the middle school combined all four elementary schools and there were going to be different kids there, Jenna didn’t want a repeat of fifth grade. There were so many days she would come home crying to Mom, who would try her best to comfort Jenna but didn’t understand; it became easier to count the good days because there were so many bad days—normal days—and out of the ordinary good days were easier to recall sometimes.
The first day of school. Jenna got off the bus and looked up at the stout brick prison they called middle school. Suddenly, she longed to get back on the bus and sit alone in order to look out at the world passing by through the window. Anything could happen there. If it was raining, she could draw smiley faces on the glass. If it was snowing, she could countdown the days until Christmas and imagine making a snowman outside. If it was sunny, the possibilities were endless. Jenna could picture herself frolicking around outside, waving goodbye to the monster as it stayed behind on the bus.
Turning around, Jenna hoped to see the monster. But it wasn’t on the bus. She could suddenly feel a weight in her backpack. At her locker, Jenna neatly put her new Lisa Frank folders on the top shelf, keeping some for the first three classes with her. She noticed that the girl next to her threw all of her books and folders onto the floor of the locker. Jenna desperately wanted to fix what the girl had so carelessly done, but resisted. Focusing on her own locker, Jenna hung her backpack on one of the hooks, making sure the back of the bag faced the right side of the locker. The weight remained, though. Somehow, she had hoped it was just the backpack—that she was just feeling the heaviness of her folders and binders like anyone else would. Like a normal kid.
To get to her first class, Jenna had to go through the stairwell. She saw students pushing doors open, some holding the door for their friends, others rushing through and bounding up the stairs like wild horses. It was a tunnel that lead upstairs where Jenna would be further away from the main entrance.
“I can always come down. I have classes downstairs too.” Jenna reminded herself, “Even if I am just going to the bathroom, I can always come down.
Taking a deep breath, Jenna approached the ominous tunnel, thinking only of her descent later that afternoon. But when she got to the top, to the door, two girls had just entered and were coming downstairs.
“Oh no.” Jenna thought. The girls were gleefully gossiping and did not—no, could not—know Jenna’s predicament. As she slowly approached the doors, wondering how long she would be standing there waiting for someone to open them, someone came through and held the door for her; Jenna thanked her and headed upstairs.
The weight she had felt earlier bothered her most of the morning. When her section went to library class, Jenna froze before she could enter the library. There in the library were the dull pastel chairs they had in her elementary school’s library.
“Don’t sit there. Those chairs have germs.” The monster hissed at her.
“There’s no other option. There’s no other option!” Jenna grew wild. The only way to calm her down was a trip downstairs to the guidance office. The counselor soothed Jenna and said it was no big deal to use a different chair. The librarian helped drag out an old-looking rickety chair for Jenna to use when she finally returned to library class.
“Why does she get a different chair?” One of the students asked, a bit envious that he wasn’t special enough to receive similar treatment.
“Don’t worry about it, Mike.” The librarian said gently.
Jenna smiled. Maybe this wouldn’t be so bad.
*****
The last time Jenna saw Grandma, she feared kissing her. Although Mom reassured her that Grandma didn’t have a contagious sickness like a cold, Jenna hesitated. This was no cold.
Grandma reassured her, “It’s okay, Jenna.”
Jenna gave her a quick peck and her family left. Deep down, Jenna knew this was goodbye, yet she still feared Grandma’s touch—what kind of granddaughter does that?
*****
Later that week, when they had library again, Jenna dragged out the special chair because she was allowed to do it on her own.
“Why can’t you sit in these chairs like the rest of us?” Richard, a classmate, asked bluntly, but innocently enough.
Jenna hesitated.
“Because she’s a weirdo!” declared Mike.
Everyone laughed. But it wasn’t like the time the boy on the snow hill ripped off his coat. He was trying to be funny then and it worked. Jenna, on the other hand, wasn’t trying to be funny. She was obeying the monster and because of her compliance, she was ostracized.
Just before lunch, after the usual rush, Jenna made her descent. Some boys held the door for her, but when they saw her they screamed, “Weirdo chair girl!” and proceeded to gallop downstairs. Walking faster, Jenna tried to catch up, even though she hated having to rely on them. But it was too late. They had made it to through the door to the meadows. They were free. The gate was closing. Jenna heard echoes of laughter. Shadows swirled on the dull brick walls. The slam of the door closing kept replaying, but the door remained shut. Doe-eyed, Jenna looked upstairs, but no one was there, only the sounds of spite and the images of distorted figures.
The tears were coming now, flowing now. Just like Alice when she failed to open the door to Wonderland, Jenna cried and created a salty waterfall. Streaming up or down, it didn’t matter. Unlike Alice, she would eventually drown.
******
“Do you shake your leg like that because you’re nervous, because it’s a habit, like you were just talking about when you wash your hands?”
Dr. Gordon had it all wrong. Just because Jenna hated middle school and had strange habits to deal with that hellhole didn’t mean every little thing she did involved the monster.
Looking up defiantly, Jenna responded, “No, I like doing this.”
Dr. Gordon chuckled, subtly, but the attitude was there. Her frizzy hair shook slightly as she denied Jenna’s answer with that laugh. If her hair twisted like vines and formed makeshift horns, Jenna would not be surprised. Yet, she still stopped shaking her leg. As if she had anything to prove to Dr. Gordon. But Jenna liked to please people; when people hated her for no reason other than the monster, it just wasn’t fair.
Behind Dr. Gordon’s comfortable-looking chair, there was a dollhouse. It looked like chaos. The father was on the roof, the daughter’s dress was torn, and the couches were askew. Jenna saw a grandpa doll and her eyes scanned each room for his partner.
“That’s for the younger patients,” Dr. Gordon said casually, “but feel free to look if you want.”
“No thanks.” Jenna knew the grandma doll wasn’t there.
******
One summer, when Cam said he was going to run away as child, Mom knew he wasn’t serious. She even packed a knapsack full of snacks and sounded skeptical when she said, “Okay, but I don’t know where you’re gonna go.” Cam defiantly took the snacks and confidently made his way to the end of the driveway. But then he stopped. Slowly, he looked behind him, saw Mom, who was never far behind, and plopped down on the pavement thinking he was still a rebel. Mom would then sit down with him and they would talk. Jenna remembers watching them from her bedroom window, slightly worried Cam would actually run away. But he never did. At the end of the driveway, Cam and Mom would laugh while sipping apple juice boxes and eventually made their way back into the house.
But now Cam was older and so was Jenna. Not feeling particularly rebellious, Jenna still planned on running away, just into the yard. She had to, but she wished she had some kind of choice, or even an epiphany like Cam had. One that told her running away doesn’t solve anything; it could make things worse. But this wasn’t running away, Jenna tried to convince herself.
She was going to kill the monster. Bring it into the cold and leave it there. Jenna thought of all the delicious tortures she could bring upon it. Immobilize it and make it obey her. Make it stay in the cold because there were “germs” inside. There was no other option, she would tell it. And then she would laugh. She would laugh not because she was trying to be funny, but because she was right.
Yet, she still hesitated. She did not even hear her mother approaching.
“Jenna?” Her voice sounded strained. “What are you doing?”
The hot, salty tears were coming, “I wasn’t gonna go far, just to the tree, and then—”
Enveloped in her mother’s arms, Jenna sobbed. She sobbed for Samantha, for Cam, for Mom, for Mike, for all of the doctors and for all of the counselors, and for herself.
But most of all, she sobbed for the monster. She pitied its need to take over her mind, its need to belittle and bully her. Her tears began to cleanse the monster. She could feel weights lifting from her toes and traveling up to her head. Jenna feared her head would explode, just like a watermelon smashing on the ground. But the weight subsided until she could barely even feel it. The monster was still there, but the world seemed as quiet as the snow drifting outside.
Daring to look up into the sliding-glass door, Jenna almost screamed. No longer the ghost of a girl she was before, Jenna saw herself. Amazed, she recognized her own reflection as something familiar, not foreign. With Mom still holding her, Jenna realized she would never understand but she was there. In this moment, Mom was there and she had been there all along.
Then, Jenna vowed to never nourish the monster’s appetite again, a vow she found difficult to keep sometimes. It begged her for food constantly. Most times she couldn’t even hear it. Other times she ignored it. And then sometimes she acquiesced to it.
Determined and refreshed by this new covenant, Jenna continued to gaze at her reflection as she felt the warmth of Mom’s hug. Yet, wrapped up in bed later on, the sadness took over again. But not feeling isn’t human. Jenna wasn’t the monster.
I was about to start high school when my dad was diagnosed with a grade three brain tumor. Even at that age, I did not fully understand the severity of his cancer or what the next steps entailed. Luckily—with one of the best brain surgeons from Duke Medical Center and the right treatment—my dad survived and has never relapsed. Life completely changed for him at the age of 50, and he was never able to return back to work, but we thank God every day for His miracle.
As I started high school, I noticed there was a football game held every September for Pediatric Cancer Awareness Month honoring a student I never had the chance to meet. Matt Hobby passed away from Ewing’s Sarcoma at the age of 18. Ewing’s Sarcoma is found mainly in the bones or tissue of children—which can’t always be operated on.
Facing this fact at a young age showed me how each cancer and every person is unique. My dad might have survived through chemotherapy and radiation, but he was fully-grown and had a strong immune system. The fact that no new drugs have been developed for children’s cancer in the last 30 years made my stomach churn.
These kids need treatments specifically designed for their smaller bodies. Only 4% of government funding is dedicated toward childhood cancer research, with the other 96% percent only funding research for adult cancers.
Growing up, we see pink ribbons for breast cancer awareness everywhere we go, and simple awareness can go a long way. As a freshman coming into the University of Georgia, I decided to start the first Rally Foundation non-profit college chapter to start spreading cancer awareness to a younger generation—normally childhood cancer does not attract advocates until it directly affects someone’s child. Many parents thanked our club for putting their children first; they know that it’s hard for college students to picture themselves in their shoes.
I am very grateful for the opportunity to make a difference in these parents’ lives and happy that my club will be continuing next year, even when I am no longer a student. My club members are passionate about this cause, and I hope more colleges will be inspired to start their own chapters.
Now, as I walk away from my four years and countless hours of maintaining the club at UGA, I know that these kids will always be my top priority. Advocating for this cause has changed my outlook on life itself.
I had a major surgery in college that gave me a reality check about my health. I remember feeling depressed during the recovery, but then I thought about the kids beating cancer. They are technically “in recovery” their whole lives due to side effects from their harsh treatments. If they can handle it, so can I.
Just when I thought I could live a normal life again, last year I woke up with an excruciating pain in my arm. I couldn’t use it for a month, and the pain soon spread to my neck. Doctors found in my MRI that I have Type One Chiari Malformation, which is unfamiliar to many people because of a lack of awareness.
To put Chiari in my own words, my brain is too big for my skull and my cerebellum is pushing on my spinal cord. Thankfully, Type One means I have enough space right now where my spinal fluid can still flow freely and I will not need brain surgery. Neck pain, headaches, weakness/numbness of muscles, and balance problems are the main symptoms I live with.
I am in the process of changing my life around to live more comfortably and continue to monitor my Chiari. I have endured months of physical therapy and spend more hours in doctors’ offices than people twice my age. Daily activities like driving, sitting, sleeping, and typing this article bring me horrible pain. But even though I physically cannot give these kids my signature piggy-back ride anymore, I will always think of them.
Any kind of head injury worsens my Chiari. For the people who don’t know me, I am a very high energy—and often clumsy—person. However, I hate living life in fear. I hate being terrified to ride a bike or play sports. I thrive for adventure, but anything that puts my body at risk is a big “no no.”
In the past, I have thought “why me?” I hated being jealous and comparing my life to others. I learned to turn away from those negative thoughts because that was not the way God wanted me to handle my pain.
I thank God for using my pain to help me become a stronger person. I thank Him for showing me how to use my passion to help others. The quote I live by and will continue to as I monitor my Chiari is: “Use your pain to work purpose in your life.”
Without having fought for these kids, I know I would not have the positive approach to live life that I do now. It is so important to always be thankful, no matter how bad my situation may seem. I enjoyed a normal childhood and so many kids cannot even say that. These “superheroes” fight hard, never give up, and of course change the world.
Aristotle wrote, “where the world’s greatest need and your greatest skill meet, therein lies your calling.”
That’s been the story of my life since 2013, when I began co-directing and producing a film called Forgotten Plague. More than 9 years ago, as a high school junior, I fell ill with a mysterious disease and had to drop out of school. For 7 months, teachers came to my house to teach me because I was too sick to go to school, let alone hold my head up.
More than 16 doctors were powerless to give me a diagnosis. It was the darkest hour of my life. Every goal I’d ever harbored stood on a precipice, teetering toward oblivion.
Internationally the disease is called “myalgic encephalomyelitis.” I would later learn that about 95% of medical schools don’t teach the disease, most doctors know nothing about it, and there are no FDA-approved treatments.
Even more infuriating was the fact that the disease was as common and as severe as multiple sclerosis and Parkinson’s, leaving no excuse for the medical establishment’s neglect. I knew that I was doomed to decades of disability of if I didn’t act with boldness. I found one of the two dozen or so doctors in the country capable of treating it.
I was fortunate to have a family willing to pay for treatments not covered by insurance. With time and patience, I recovered enough so that I could start college at the University of Georgia. I kept walking, ever so haltingly, toward the life I’d imagined.
During college, I spent time working at Newsweek and at USA Today. Covering news from around the country was thrilling, but I wanted to make my own mark. I wanted to tell a story no one else could tell. When a major news item on my disease occurred, I ventured to tell my own personal story in USA Today.
People from all over the world wrote in, many telling the most devastating of stories. They were sufferers far sicker than I was, who spent years laying in darkened rooms, many of whom lost the ability to walk and talk. Some spoke even of suicide as the only way out of their unending hell.
My story turned into a series of articles. As I became more immersed in the global advocacy community, that larger, more important project I’d always dreamed of was coming increasingly into focus. Finally, after graduation, I announced a feature film project in another USA Today piece.
I wrote, “There is no way I can ignore these facts knowing I have access to a national platform and have the skills to tell the stories of these unheard voices.” I still live by those words today.
The film project had its ups and downs. I was named a Stanford Medicine X ePatient Scholar and the national ME/CFS Advocate of the Year. My co-director, Nicole Castillo, won a regional Emmy Award for a series of news stories she produced on the disease with the CDC.
We travelled all over the country, filmed cutting edge research, spoke to some of the best scientific minds in the world, and saw things we’d never dreamed were possible. Yet there were depressing lows: even our ultimate fundraising total of $150,000 was always never quite enough. We worked 14-hour days. There was always some financial or regulatory threat that might shut down our fledgling non-profit production company.
Each day was like drinking out of a fire hose to learn everything we needed to know from molecular biology, to social media marketing, to IRS policies, to digital video codecs, to distribution contract negotiation. At one point I publicly asked questions about the prospect of receiving government grants to prop up our organization and we were bombarded with criticism. A few said it was like I was selling my soul to the devil.
For a patient population neglected and mocked for decades by the medical establishment, our film needed to be sufficiently anti-government to shore up our passionate fan base. Such is the time-honored tradition from 19th century muckraking journalism to the Web 2.0 world’s crowd-funded social justice documentaries.
And the weighty mantle of leadership was always a black dog nipping at my heels. Throughout all of it, however, the goal was always burning brightly in our souls. On a daily basis we received letters from sufferers from all over the world who told us they were rooting for us, praying for us. One woman told us she’d lost her job because of the disease and feared she’d soon be evicted. Yet we were welcome to stay in her house when we came to her city…if she still had it.
Another one of my favorites: “I’m an atheist, but bless you for what you’re doing.” One day, while filming in Boston, both Nicole and I were admitted to the hospital because of the trauma of running a nationwide film production. The next day I received an e-mail from a woman in South Africa saying she was praying for us, and it added the tiniest spring to our hobbling steps.
That type of motivation is far greater than money, and confirmed my belief that there was nothing more important I could be doing with my time on this earth.
Friedrich Nietzsche said it best: “the man who knows his ‘why’ can overcome almost any ‘how.’” Our “why” has been a North Star guiding our journey. This was the great under-reported medical story of our time.
The “how” is constantly shifting. Early on it was in starting a corporation or hunting out rental car discounts in Nevada. These days it’s in creating UPC codes, managing our DVD supply chain, and understanding the economics of movie theater box office sales. At each stage, the learning curve is still just as steep. And the trauma and workload is always threatening to overtake me.
But I often remember the words of Nietzsche, “One must have a little chaos in oneself to give birth to a dancing star.” We premiered at Hollywood’s Chinese Theater, played sold out screenings across the country, and were hailed as a “Must See Documentary” by the Huffington Post.
Recently I heard a sermon from renowned pastor Andy Stanley, who said that you ought to live your life such that when you get to heaven you’ll have a line of people thanking you for what you did during your life.
The greatest blessing I can think of is I don’t have to wait until I die for that.
(The film is available for download via iTunes, Google Play, and Amazon VOD January 21st. It is available on DVD via forgottenplague.com)
The summer before my sophomore year of college, I took my dad to his annual colonoscopy.
As he was waking up from under his anesthesia, the nurses called me back to see him, where he was in a room with other patients waking up from their procedures. My mom had warned me that morning that his Parkinson’s disease would make him take longer to wake up.
I was joking with him about how groggy he was when the doctor came in. The doctor sat me down and said, “It doesn’t look good. It’s probably cancer. Once your dad is more awake, I want to meet with both of you in my office,” but all I heard was “CANCER.”
I watched as it took three of my friends’ parents, one of my high school classmates, and other cousins and aunts. I was numb. That day we scheduled scans for the next week and more doctor appointments.
The doctor said he wanted to go ahead and do everything they could as soon as possible, so we did. Dad had scans done that confirmed he did indeed have colon cancer, and it had already spread to his liver. Doctors removed the cancerous part of his colon. Then he went through countless rounds of chemo to decrease the size of the cancerous spots on his liver so the cancerous part of his liver could be removed with more surgery.
That summer, my family became much closer. I had always been a daddy’s girl, but while I was in high school, we argued a lot. After his cancer diagnosis, we definitely grew closer again. I enjoyed being a part of my dad’s recovery: spending the nights with him at the hospital and going to his chemo appointments.
My dad completed more chemotherapy treatments, just in time so that he could be finished for our trip to Daytona Beach. But as soon as we returned home, the doctor told us that Dad’s cancer wasn’t gone. There were still some spots on his liver, so he went through more rounds of chemo and some radiation.
The cancerous spots decreased in size but haven’t completely gone away yet. He just finished his third round of treatments three years after his cancer diagnosis. After watching him endure so many rounds of chemo and radiation, eventually I started to feel a little frustrated.
Why couldn’t I have been one of those people whose family was totally unaffected by cancer?
This fall, my grandfather was also diagnosed with colon cancer. He took chemo pills and went through radiation.
My family thought that since we had already gone through so much chemo and radiation with my dad, we would know what to expect with my grandfather’s treatments. However, instead of really helping, his chemo and radiation treatments just seemed to hurt him more.
After numerous hospitalizations and a COPD diagnosis, Hospice moved my grandfather into my parents’ home. Over spring break, I got to come home and spend lots of time with him. During that week, he really perked up and stood up for the first time in almost two months.
My parents started to talk about the possibility of taking him out of Hospice because it really looked like he was going to get better. I left home the last Sunday of spring break and kissed my grandfather goodbye and he told me to “look out for the car behind the car in front of you” like he always did.
I was planning on coming back home just two weeks later to celebrate Easter with my family, so I didn’t think much of our goodbye that day. Just three days later, my grandfather passed away.
My sophomore year, I joined UGA Relay For Life soon after my dad’s first cancer diagnosis. Relay gave me a way to help in his fight against cancer. As an executive board member of Relay this year, I have become friends with so many others whose lives have been affected by this terrible disease. Many have lost family members to cancer and yet continue to fight for a future without cancer.
For a long time, I felt helpless against cancer. I can’t help but think that if my grandfather had just lived two weeks longer, I could have said a real goodbye to him. I Relay for that two weeks.
I Relay so that one day some girl can have two more weeks with her grandfather because I know how much that time would mean to me.
Why do bad things happen to good people? That’s the cliché phrase we’ve all heard and used before when unexpected things happen to people we know and love. It’s hard to accept these unfortunate events, but sometimes there isn’t such a horrible ending.
An unexpected twist of fate happened to my aunt and uncle’s family, but out of it all, they turned a difficult situation into something worthwhile. My aunt and uncle are two of the most caring and kind people I have ever met. Never once in my life have I heard of either of them doing something wrong or unkind.
My uncle is an accountant, and my aunt is a stay-at-home-mom, but does some tutoring on the side. They had two boys, Luke and Matthew, but my aunt really wanted to have a girl in the family. My aunt specifically told me, “Don’t get me wrong, I love my boys, but I definitely need more girl power in this house.” So it was decided, they were going to try for a girl. At the beginning of my freshman year of high school, my aunt announced that she was pregnant and the whole family was excited to hear what the gender of the baby was going to be.
A couple months later my aunt found out the gender, and lucky enough, it was a girl. I have never heard someone as excited as my aunt was when she announced this news. The whole family was in a “baby hype” mode and couldn’t wait for her to come. Finally, after nine months of pregnancy, my new baby cousin was on the way. I was at my grandma’s house, waiting on the call from my aunt and uncle, but it seemed to be taking longer than we expected. We didn’t get a call until the next day, with some much unexpected news. When my aunt and uncle called, there was a sorrow feeling that swept over our family.
Kabuki syndrome (KS), is a disease that presents a child with unique facial characteristics, mental retardation, and socio-emotional delays. In other words, Amalie has disabilities that don’t allow her to develop and fully function like an average infant should. For the first 9 months of her life, she was put into a lower body cast after hip surgery to help set her hip bones and joints correctly. To help with the rest of her muscle movement, she had to go through extensive physical and speech therapy when it was time she started to learn how to speak. This was a very tough time for my aunt and uncle to go through. My uncle had to take time off of work to help take care of my other cousins, Luke and Matthew, while my aunt took Amalie to countless doctor’s appointments and therapy session.
My uncle said, “I have never been so stressed and so worried about someone in my entire life. At one point, I almost lost all hope because there was so much stress put on our whole family.” My aunt replied, “But we managed to get through all of this together.” My cousins helped by cleaning around the house and not causing any trouble when “baby Molly” was around. They came together as a family to support one another in this very difficult time.
Five years later, my cousin, Amalie, is now walking and improving her speech every day. My aunt has enrolled her in pre-school and is absolutely loving it. “At first it was hard for her to be in such a social setting, but now she loves it. She’s made some friends and doesn’t stop talking.”
However, there are some words that she struggles with, so Amalie is taking sign language classes to help get her points across to people. She does still have some developmental issues, like being too small for her age and not being able to carry on full conversations like an average five-year-old should be able to. Despite all of these setbacks, Amalie is one of the happiest five-year-olds any person has ever seen. “She loves to learn new things…math is one of her favorites”, my aunt says, “…and even though she has physical setbacks, she is always beating up her older brothers and is the toughest girls there is.” My aunt and uncle have given so much time and effort into helping their daughter live the most normal life she could, and I admire them very much for that. Not every couple could have done what they did, given the amount of stress that was added to their life.
Not to mention, my two other cousins, that helped out so much, even being as young as they were during that time. Due to their efforts as a family, Amalie can live a normal life and enjoy the life she was given, despite the hardships she has endured. Not many families could have come together like my aunt and uncle’s family did. Despite all odds against their daughter, they didn’t let it come between them.
This is a quality I truly admire because having to give up leisure time and work time can be very strenuous on a family, especially when there are two other young kids in the family. They took what they were given and made the best out of a difficult situation, and are now raising one of the most strongest kids I have ever known.
Their family is a perfect example of how to handle life’s unexpected events in a manner of grace and determination.
It’s the fall of my sophomore year. I’m settled, feeling confident, and more ready than ever to start pumping up my resume with extracurricular activities.
I’m interested in health science, so when presented with the idea of joining Relay for Life at the University of Georgia, an organization that raises money to support the American Cancer Society, I said “sure, why not?” I knew it would look great to future employers and my great grandmother had cancer so it meant a lot to me to fight back against a terrible disease. So, I joined a committee.
Not really invested in anything the organization put on, but rather just going through the motions and showing up to meetings when it was convenient. I wasn’t proud of this, but at the same time I was a busy college student, so that’s a great excuse, right?
Second semester arrived and I had this unexplainable gut feeling that I needed to step my game up. I needed to get involved, get motivated, and do whatever I could to help this organization because its passion and heart was worth investing effort into. I kicked it into high gear and started fundraising, being involved with fellow committee members, and getting to know the girl that oversaw our committee.
Fast forward to the week before the big event. It was a normal Friday morning, except I was planning to travel home for Easter weekend. My dad called me and said with a serious tone “call me when you get home, we need to talk.” Those words are never good.
Of course the whole way home all the possibilities of news I could receive raced through my head, but didn’t prepare me for what was to come. I finally arrived, and anxiously called my dad as he requested. He said, “Brittany, Granddaddy has cancer and it does not look good.”
Shattered. My heart. My world. Turned upside down and back again.
I didn’t know what to say or do, so I just hung up and took off running down the road. I ran until I was out of tears, and sat down in my favorite spot by the neighborhood creek. I sat there watching the water pass just as fast as the emotions ran through my heart. I kept thinking of anything, anything I could physically do to stop this or make it go away.
There was nothing I could do to fix the cancer in Granddaddy’s body, but there was an opportunity to stop this disease from shattering other lives in the future. Relay for Life was that channel of energy and emotions I could utilize for grief, coping, but most importantly, a beacon of hope.
Fundraising, planning the night-of, and my commitment to this organization is my way of standing up to cancer, honoring those lives lost, and celebrating the ones spared. I believe God uses us as the hands and feet of His mighty power to carry out His will for the world, and I believe we are His vessel for making a difference in a world full of cancer.
I continue to serve this organization now as the Logistics Chair, and wouldn’t trade my time here for anything.
To me, Relay is more than just another detail of my resume; it is my Hope and heart to say that one day in my lifetime, I believe this world will finally be cancer free.
LaGrange, Illinois. July 1965.
It’s a bright, beautifully sunny day in the suburban American Midwest. The setting mirrors that of the peaceful Main Street post-war image we so often associate with complacency and prosperity; a young mother sits on her front law and reads the newspaper as she watches her two young boys frolic carelessly around the neighborhood on their shiny, new bikes.
She finishes the front page, smiles and stands as she gets up to bring the boys something to drink. Once inside, she reaches for the handle of the refrigerator, only to be immediately paralyzed by the all-too-familiar sound of a piercing adolescent shriek. She rushes out of the house, blind with hysteria.
She races around the block in a frenzy, and spots her youngest son, Brett, running toward her, screaming, tears running down his face. “It’s Dave! Mom, help – please help. Dave needs help.”
She picks up Brett and runs down the street, desperately searching for her oldest son, David. As she approaches the end of the street, her horrifying suspicions materialize.
The mangled iron bars of a previously pristine bicycle lay smashed at the base of a large oak tree. Her eyes follow a chilling trail of blood, at the end of which she finds her 10-year-old son, unconscious, with the handlebar of the bike pierced cleanly and completely through his abdomen.
Passersby accumulate, terrified by the vast pool of blood that seemed all too large for such a small boy. After a frantic ambulance trip and immediate rush into surgery, Dave’s mother, Jeanne, and father, Gil, sit nervously in the hospital lobby awaiting an update on their son.
An exhausted doctor emerges from the back doors. “Well, all I can say is, Dave is one of the luckiest kids I know. He has suffered extensive internal injuries, lacerated his liver, and experienced a near lethal level of blood loss on top of everything else. However, he has received a series of life-saving blood transfusions and is responding well to surgery. This is nothing short of a miracle. Your son is very lucky. He’s going to be okay.”
Jeanne replays these words over in her mind. She breathes a sigh of relief.
Dave’s going to be okay. He’s going to live. My son is going to be okay. Or so she had thought.
Fast-forward roughly thirty years, to a warm summer in the lackadaisical suburbs of 1990s Atlanta. A 38-year-old Dave makes his daily morning drive to work at the Delta Air Lines headquarters. He sits behind the wheel, smiling, thinking about his beautiful wife, Jan, and two precious children, Julia and Dylan.
He had just received a promotion at work. Jan had mentioned just last night about trying for another child, something he had secretly been wishing for himself. Life was good. No, he thinks, life was perfect.
Turning into the company parking lot, Dave notices a sign for a company-wide blood drive. In an unusually cheerful mood, he thinks, why not? Might as well spread around some good fortune. He heads over to the donation center, signs up, sits down, and lets the friendly nurse draw his blood.
A half hour passes. As Dave sits patiently eating his obligatory crackers, he notices a few nurses congregating toward the back of the room, whispering and stealing occasional glances at him. One of them approaches, with an unsettling look on her face.
“Hello, David, is it? I’m so sorry, but we’re not going to be able to accept your blood.”
“I’m sorry?”
“Your blood. We can’t take it. Our screening shows that it’s tested positive for Hepatitis C. We recommend you see a doctor as soon as possible.”
A heated wave of panic and confusion washes over him. What the hell? Only tattooed drug-using hippies have Hep C. I don’t do any of that. This is impossible.
In a confused daze, Dave gets up, takes their useless information packet, and drives to the nearest hospital. They’re wrong, he thought. They have to be. I’ll go make sure of it right now.
After an exhaustive day of tests and imaging, Dave sits in his examination room restlessly thinking over the past 24 hours. What if this is real? What if I’m actually positive? What am I going tell Jan? Wait, what about the kids?
A stoic-looking doctor enters the room, holding a huge packet of information. “Dave, I’m afraid I have some bad news.”
His heart sinks.
“You need further testing, and we’re going to set you up with a specialist, but yes, you are positive for Hepatitis C. Dave, normally I’d tell you not to worry, but I’m afraid the Hep C has presented you with Stage IV liver disease. You are showing signs of the proceedings of liver cancer.”
Hepatitis C is commonly referred to as “the silent killer”, and it has quite the interesting history. Today, the outlook for patients with Hep C is very good, and transmission rates are lower than ever. But it hasn’t always been this way.
The virus itself wasn’t identified until 1988, a mere nine years before my father had learned of his positive status. In most cases, Hepatitis C is asymptomatic; this allows patients to go untreated for decades, as they appear to be living a perfectly healthy life.
As more untreated years pass, cirrhosis of the liver begins to accumulate and an astonishing level of irreversible liver damage occurs while the patient lives on blissfully unaware of their condition.
Unfortunately, my father fell directly into the generation most at risk for Hep-C related deaths. Today, a simple blood test will inform a patient of their status. And although there is no cure, this can play a major role in extending the life of a positive patient. But no such test existed for the people of that specific generation.
This strain of the virus wasn’t even discovered until the 90s. In essence, these people were infected with something that didn’t even exist.
A detailed examination of my father’s medical history traced the infection back to his post-bike accident blood transfusion, nearly 40 years prior. The doctor that had claimed to save his life may have actually inadvertently taken it away from him.
Proper blood screening techniques did not exist back in the 60s, which allowed infected blood to be transferred into injured patients. My father’s mode of transmission contrasted highly with the stigmatized views on Hep C; it was assumed by the general public at the time that only people who used intravenous drugs, had multiple tattoos, or participated in rampant unprotected sex were the ones who had Hepatitis C.
My father’s realization of his status was concerning in more ways than one. The topic of sexual intercourse as a means of transmission is controversial, but the possibility that he had infected my mother still existed.
Even more terrifying, had she been infected, it was possible that she could’ve transmitted the disease to my brother or to me. Following my father’s diagnosis, my mother, brother, and I were immediately tested.
For months, my dad struggled with the idea of moving out of the house, as the smallest drop of blood from the most innocent of cuts had the potential to change his family members’ lives forever. But this wasn’t even the worst of it.
Although none of us were willing to accept it, my father was running out of time. A young mother struggled with the idea of losing her husband. Her two young children struggled with the idea of losing their father.
My dad was forced to make end-of-life preparations that no young adult should ever have to make. Everyone was at a loss.
How would Jan, a current stay-at-home mother, support her two kids if Dave were gone? Even more pressing, how the hell were they going to pay for his impossibly expensive medical treatments?
My father’s journey down the road of “treatment” was excruciatingly painful. He endured multiple rounds of chemotherapy and interferon, and he had to take an obscene amount of vitamins and anti-viral pills on a daily basis. The side effects of these drugs cause patients to experience “flu-like” symptoms and strong emotional deviations; in essence, with each pill he took, my father self-induced what felt like the flu every single morning. Every single morning.
Days turned into weeks, which turned into months. Which turned into years. Try to imagine what it’s like to have the flu for a decade. In addition, a botched treatment of interferon left him deaf in his right ear, a side effect that proved to be more disabling than any of us had anticipated.
He was always at the hospital, ridden with fatigue. He said that food didn’t even taste the same anymore. As the doctors fought tirelessly to slow the progression of the virus, my father still accumulated more and more irreversible liver damage.
As a precaution, he was placed on the liver transplant list, a last-ditch option that wasn’t even really viable given his condition. By the time that he had started treatment, I was old enough to realize what was happening to my father. When discussing his diagnosis, my parents were very vague and never really went into great detail, in efforts to keep their children from unnecessary distress.
I was young, but I knew. I could see the life leaving my father’s previously brilliant blue eyes. He was losing hair, becoming thinner, paler…as if he were wafting away. My 6’1” father’s weight rivaled my own. On the days he did go to work, he would come home defeated, eat, and then go to sleep. My mother’s and his relationship, something I had previously idolized, was becoming noticeably strained.
Sickness has a heartless way of tearing marriages apart, of tearing families apart. It knows absolutely no bounds. Sickness is ruthless. It’s sadistic. The mere cost of treatment is enough to send most families over the edge. Financial distress placed an unbearable weight on our shoulders.
Perhaps the most disturbing of the challenges were his violent emotional and behavioral digressions as a result of the medication. The disease had literally taken the life out of him. His adventurous and upbeat spirit ceased to exist.
He was always irritable, always angry, always starting fights with the 3 of us. I dreaded our family dinners, something I had used to look forward to, because tensions were always high and issues were always magnified. My dad simply wasn’t who he used to be.
I remember constantly telling myself to be patient, that it’s just the medication talking, that it would all be over soon. But at the same time, it frustrated the hell out of me. I was watching someone I had known and loved transform erratically before my eyes.
I couldn’t just sit down and talk with him anymore. I couldn’t relate to him anymore. I honestly didn’t even know him anymore. And there was nothing I could do about it.
A previously optimistic, animated, and vivacious individual now looked at life only as a grim promise of sickness, cruelty, and heartbreak. Which was a reality to him. To see my father succumb to the wrath of an aggressive virus, and to see his central being change as a result of it – it honestly scared the living hell out of me.
And I remember thinking, what is the point? Is attempting to fight off this disease really worth such a horrifically low quality of life? If the treatment did end up working, would I get my old father back, or would I be stuck with this unfamiliar, contentious being for the rest of my life?
I spent most of my nights crying myself to sleep, distressed over what was going to happen to my family. I couldn’t lose my father. Why was this happening? How were we going to get enough money to pay for everything? What were we going to do without him?
I was constantly terrorized by a series of questions a 12-year-old girl should never have to ask herself. I never slept, I was always sick, and I rarely attended school. I became seriously depressed during a very volatile point in an adolescent’s life.
Much worse was the violent rage I internalized over the injustice of his situation; he didn’t ask for any of this. He never did anything to deserve it. All he did was go to the hospital when he was hurt. 50 years ago. They were supposed to help him, and now his life is ruined.
I cursed the doctor that gave him the contaminated transfusion over and over again in my head. The age-old question tortured my mind as I got up every morning: Why do bad things happen to good people?
Now, I’m a self-proclaimed pessimist, or rather – realist, if you will. My original answer to this question would probably leave you feeling empty and confused, frightened by the frailty and apparent insignificance of human existence.
But if there’s anything my father’s story has taught me, it’s that the mere consideration of this cruel question is meaningless. To spend a lifetime scrutinizing this question, cursing it over and over again in your mind – is a mistake.
Instead of spending my father’s dwindling moments in his presence, learning from him, loving him, would it be better for me to push him away and foster rage over the unfairness of his sickness? Instead of fighting to spend these last precious moments surrounded by his family, would it be better for my father to surrender in the face of his vicious aggressor?
You find the things in life worth living for and you fight. You fight like hell. You fight to find solace in the immaculate beauty of this person’s worldly existence and you fight to find peace with their presence beyond it. And at the risk of sounding cliché, his life has taught me that every story, somehow or another, always has a happy ending.
During my junior year of high school, my dad was chosen for a new clinical drug trial for Hep C patients. The risks were enormous, but we were desperate for a breakthrough. He was accepted into the program, and was administered the drugs for approximately a year.
Much like his previous treatments, the side effects were less than desirable – he was constantly lethargic and irritable. I was convinced that he was traveling down the road he’d already traveled a thousand times.
One summer night, after a long day at treatment, as my family ate our favorite Chinese takeout, my dad pulled a rather interesting fortune out of his designated cookie. It read, “Remember three months from today. Good things are in store for you.”
He grabbed a pen, wrote the date in the upper left corner, and taped the fortune to our fridge. He stared at it for a second and walked back to the table.
Later that fall, my family and I were discussing Gurley’s stellar performance in the latest UGA game at the dinner table when Dad’s cell phone started to ring. He peered at the number, abruptly got up from the table, and hurried into the other room to answer it.
What the hell? I thought. He never answers the phone at the dinner table. A few minutes later he returned to the room, looking down at his phone. He looked up, and I see tears in his eyes.
“It worked.”
“What?”
“They worked. The drugs worked.”
My heart stops. “Dad, what are you saying?”
“Jules, the virus. It’s gone. I’m cured.”
It felt like the floor has shattered underneath me. Tears streaming down my face, I ran and jumped into the arms of a man who had just won his battle.
I closed my eyes and took in a moment that will stay ingrained in my memory for the remainder of my days. We were free.
Later that night, I remember the fortune cookie paper. I run over to the refrigerator and frantically move aside all the papers that had piled on top of it. I see “7/21/13” scribbled in the upper left corner in my dad’s messy, unmistakable handwriting. Confused, I look back at the calendar. Wait, this couldn’t be right. There is no way. This is impossible.
Today is October 21st, 2013. It was exactly three months later. -J.O.
We live in a day and age where it’s difficult to find someone who’s life hasn’t been affected by cancer in some way. Unfortunately, like many others, I can’t remember the point in my life where cancer wasn’t in my vocabulary.
From a young age I have been exposed this disease that has robbed me and my family of so many memories with the ones we love. It became all too real in high school, when my best friend was sleeping over on school nights while her parents were away in Mexico on experimental chemotherapy trips to attack her father’s colon cancer.
It became all too real when my aunt was asking us to come visit to explain her terminal diagnosis in person, rather than over the phone. It became all too real when my cousin, and built in field trip chaperone, was told that only 3 hospitals on the east coast would even look at his case because it was so rare and unexplored.
It became too real when the man who knew how to light up a room with his belly laugh was told he had throat cancer that barely allowed him to speak at most points during his treatment. It all became too real, and too unbearable at a speed that took my anxiety to a whole new level.
Every time the phone rang, my heart sank into my stomach wondering if it would be an update that would change everything. I lived my life in fear of what cancer was taking from my loved ones.
Day in and day out, I couldn’t find solace that I was away at college and unable to help, even though all I could do was miniscule in compared to their daily fights against this horrible disease.
As a confused little freshman, I joined a random person’s team (shoutout to my now BFF), and arrived at the rainy and chilly event, unsure of what to expect of the night. I knew there was music, food, and community, but I didn’t expect to find the comfort my soul so desperately needed.
As I heard others speak about their battles with cancer, the loss of their loved ones, their continuing bouts, my eyes were gently opened to all that I could do to help. Even from hundreds of miles away, I could do something that would help change someone’s life.
Here I am, 3 Relays later, 2 committee families created, and one final Relay For Life at Virginia Tech approaching, and I am at a loss for words to express how much this organization has given to me. Opportunities to stray far outside my comfort zone, to not settle for mediocrity, and to express all the love I feel inside of me for the wonderful members of the executive team and committee of Relay For Life at Virginia Tech.
A Relay friendship is unlike any other. It is created on the basis that we’ve all been hurt by the whirlwind of cancer in our lifetimes, and while that hurt is immense, we can counter it with hard work and determination to make our event successful and spread the mission of the American Cancer Society.
In every event we put on or Cookout milkshake we eat, we bond a little more, learn a little more about each other, and eventually fill some of the hurting void that cancer left with a friendship that will last a lifetime. I find myself at a loss for words to explain what these friendships mean to me and I’m continually thankful for all the twisted paths that brought us all together.
I am thankful to Relay this year in memory of my Aunt Marilyn and Rich Conklin, in honor of my cousin Terry Carson, and in celebration of Jere O’Brien kicking cancer’s ass this year.
The very idea may seem ridiculous, even offensive to some people. However, prophets can be cited as examples of powerful spiritual personalities who have held a temporary resentment toward GOD for the judgments HE brought down because of the sins and evils committed by HIS chosen people. The punishments often seemed worse than the crime, in their eyes. Truly, forgiving GOD is never necessary, and yet…I have occasionally held some residue, deep inside, a secret resentment, even disappointment toward GOD for the situations I found myself in throughout my life.
For example, I was so angry when I lost my Soror, lawyer to be, sister friend to AIDS. How could GOD not rescue her or prevent evil from happening to her? I was angry with GOD because in 1989 he allowed me to bare witness to a stranger’s suicide. I stood as he jumped from the bridge to his death because brain cancer destroyed his beautiful forensic mind.
I tried to stop him but couldn’t and held myself personally responsible for my inability to physically stop the jumper. I was angry with GOD for years because I thought I’ve been dealt a bad hand. I thought it unfair that I was childless and unmarried. I am after all a good daughter, sister, cousin, niece, friend, neighbor, and Godmother. I have no vices to speak of. I am not unlike those who live the fairytale and find happily ever after. I am no menace to society. I have played by the rules of a civilized society. I am educated because the principle goal of education is to create individuals who are capable of doing new things, not simply of repeating what other generations have done, people who are creative, inventive discoverers.
So why has GOD denied me? I was angry with GOD because why would HE allow me to meet and grow to love the wrong person for all the right reasons yet again. How could HE allow me to unwittingly discover the man who is undoubtedly my music from another room and not allow me to dance with him forever?
I resented GOD because HE not only took my Mother too soon but HE took her before I could apologize to her. Four years ago when I lost my Mother to lupus we were distant. Let me quantify that, being distant for us meant we spoke once a day instead of three to four times a day. My Mother & I were very close my entire life but there was distance at her time of death because the four months leading up to her death I got engaged to someone that she thought was no good for me.
We argued that October 2011 and never spoke of it. Like it never happened. I still called. We talked for three hours the night before she died but I didn’t go home as often because I was mad. Not apologizing or making amends left me with tremendous guilt when she died, it’s my worst regret, my greatest shame. I blamed myself and I was angry with GOD for robbing me of the chance to fix it.
I bet we are absolutely pissed off with God far more than we would like to admit.
While it may seem irrational and illogical to blame GOD for choosing the wrong partner, accepting an unfulfilling career, or living financially beyond your means, many of us do just that. We blame GOD. I held GOD responsible for my Mother’s death, my Soror’s suffering, my poor choices, my stubbornness, my hardspots, and my singleness. Who am I to forgive GOD for not preventing all the horrible things that have happened to me and to the world?
I’m human. But in my humanness I’ve discovered that my deeper healing will only come when I admit to myself that I am angry and accept that it’s okay to be the same. Only then can I truly appreciate that GOD allowed me to witness the stranger’s suicide so I could appreciate life and know permanent solutions are not the answer to temporary problems. HE took my Soror and Mother because he needed them more and recognized the lessons I learned in the wake of their deaths were necessary for my continued growth.
Everything I held a grudge against GOD for was just not and is not in HIS plan for me. I suspect GOD brings people to my life so that I can stand in the gap for them. When GOD has us unwittingly intercede for one another, our chief purpose is to fill in those gaps in one another’s spiritual armor and hold up that person so the enemy can’t gain an advantage over them.
Likewise, when we fail to intercede for one another, we’re virtually giving the key to that person’s spiritual house to his/her enemies for them to wreak havoc, to steal that person’s peace or joy. Just as we wouldn’t build a brick wall and intentionally leave gaping holes in the cement joints, I would go so far as to say it is malicious for me to not “go between”/ “stand in the gap” for my brother, my sister.
Jesus said, “By this all shall know that you are my disciples, if you have love toward one another.” [John 13:35] How can I say I love anyone and not pray for them? It’s impossible! It’s a contradiction and a lie! “Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much.” [James 5:16]
Perhaps GOD disappoints me to incite empathy, it pushes me to feel the pain of others in my heart. HE makes me angry, calling me to stand. So I’m standing in the gap. It’s not easy, it’s frustrating, it’s even painful but I’m standing in the gap for others because it is on the side of righteousness and it is how I forgive myself and atone for questioning GOD.
Many will find my willingness to acknowledge my anger and disappointment with GOD blasphemous. Holding something against GOD, Kimberly? Really? I say to you GOD already knows my heart. What is it exactly that you think GOD doesn’t already know about you?
Since my Mother’s death there have been days where I literally questioned my ability to go on, i.e. get dressed, face the world, and even interact with people. Then I am reminded of her humor, her spirit and the presence of GOD. What occurs most often is that I go downstairs to find the light or ceiling fan on in my den.
Surely any electrician will say there’s a wiring issue or the remote control for the ceiling fan needs tweaking but I believe it is the presence of my Mother and therefore GOD. This morning at four o’clock GOD and my Mommy showed up again, offering their blessing for my desire to tell this tale. So with that confirmation I am reminded that what matters supremely is not the fact that I know GOD, but the larger fact which underlies it, is that HE knows me and is present.
All my knowledge of HIM depends on HIM and his never yielding interest in knowing me. I know HIM because HE first knew me, and continues to know me. HE knows me as HIS inquisitive child who constantly asks why and why not, who is stubborn, loving, kind, generous, proud, and who is also angered by what allows her to stumble and what manifests as suffering to others in the world. HE knows me as HIS and HE knows I forgive HIM and trust Him without hesitation, or reservation; because I choose to die empty for HIM, again and again.
My mother-in-law’s name is Joan. She is sixty-three years old and dying prematurely from ALS.
She is in the final stages of this relentless disease which has taken away, among many other things, the usage of her loving arms and kind hands, the ability to voice her love for us beyond a labored whisper on her rare “good” days, her ferocious dignity to live out her days mothering us instead of us taking care of her, and my time to tell her how I feel.
Her final months are upon us, and although I am a Registered Nurse and have counseled many people through grief, I am finding it nearly impossible to begin my own grieving process. As a nurse, I learned how to put on a tough exterior to make it through the difficult days. I find myself using the same tactics to make it through the process of losing my mother-in-law.
On the outside, I act like, “I got this,” yet on the inside, I am petrified of losing her. In the past two years I have tried to avoid what is inevitably going to happen by carrying on as though she had not been diagnosed with a terminal disease.
I want my children to be influenced by the person she is and not the person she was . . . and I don’t want my husband to lose his mother.
When we were told of her advanced directive wishes, I caught myself going, yet again, into nurse mode. I was too busy making sure everyone else understood what her wishes meant to really absorb my own feelings. Riddled with frustration, I have watched on the sidelines as her body has wilted away knowing there’s nothing I can do to stop the disease’s progression.
I have held my husband during the night as he is consumed with grief and put on a smile during the day, so our sensitive daughter does not pick up on our pain and try to carry it on her little back. I have tried to do my best as a nurse, a wife and a mother, but I wonder; how have I done as her daughter–in-law? Does she know how much I love her? Have I made her as proud of me as I am of her?
As her time with us is dwindling, I feel in writing this eulogy and seeing it in print, it will in some way imprint my feelings into her heart. I hope my words can do her justice.
My first assessment of Joan was that she was a simple, sweet woman who was happy . . . but I couldn’t help but think she must want more out of life. Boy was I wrong! She knew exactly what she wanted!
It was hard for me to understand a woman who seemed to live her life for everyone else but herself. It seemed like a life that still focused on being a mother to her adult children could be a life of missed opportunities.
I could not fathom how watching sports with her boys day in and day out could be enjoyable. I did not understand how tending to her husband’s every need could fulfill her own needs. I couldn’t grasp how coming to her son’s aid anytime he asked – even if this meant driving nine hours to cook his favorite meal – did not make her feel taken advantage of every once in awhile.
It took me longer than I want to admit to understand just how special Joan was. The turning point was when I realized that I, too, was special to her.
She was there after my first miscarriage as well as the two that followed. She was there to nurse me after my spine surgery when both my mom and husband needed to go back to work. She was there after the birth of my daughter, pulling her bassinet into her room, so I could get the sleep I needed to heal.
In some ways I regressed when she was around, defaulting to her also mothering me and taking care of my family when life had gotten too hard or too busy. She never once complained. I have never met a more selfless person.
Joan was my angel on Earth. All she wanted to do was give and never receive. For her, the gift of truly giving to others is what fed her beautiful soul. In time, I realized Joan’s reason for living was to be a mother and a grandmother. It was her true calling, and all she ever really wanted.
I was the one who needed to learn from her. I was the one going ninety miles an hour through life never really stopping to enjoy what was right in front of me: my family.
Joan has made me a better mother, a more conscientious wife and friend. Through her I have learned to give more freely and more often with ease. It is because of her example that I will pass on to my children just how special it is to be a mother.