Changing Landscapes: Spring

Last fall when I wrote Changing Landscapes: Winter and talked about the grief of losing my dad-in-law and likened it to the falling temperatures, the falling leaves, the settling down for winter months of barrenness, I had no idea that the season befalling me held more death and change than I could have possibly foreseen. In September we lost Jim. In November we lost my sweet, fiery grandma, Frances Bowles. In January we lost my Aunt Dee. Each death was completely different than the one preceding it, processed and handled in unique ways, tailored to fit the person and the situation. I hated every minute of it, even while standing in awe of the love that surrounded me.

My Maw was ninety-nine. She was strong and resilient up until the last seven to ten days of her life. Only at that point did her body completely fail her and her mind wander into territory only she could know and interpret, dreaming the dreams of the mists between fiction and reality, between death and life. And when her release finally came, we were thankful in the midst of our grief. We wished her nothing but celebratory freedom and sent her Home on a tidal wave of love.

Dee’s passing was not the same. It was unexpected. It was sudden and horrific and it struck our hearts as violently as her car struck the embankment she drove into after her heart stopped and her spirit left her body. We know she wasn’t in her car, in her body, when metal hit ground at such a high rate of speed. We know that because science is a wonderful thing and so is faith. And when the two combine, it leaves very little to doubt.

Still, the aftermath of an unexpected, unplanned, sudden absence is turbulent and moves with a momentum that is forceful and demanding in ways that expected passings don’t muster. Death, it turns out, has many faces. It is sometimes like a gentle rain, bringing release and beauty. Other times it is a monsoon that rips away peace and safety like a monster of the deep. And we who are left must find a way to move forward, bowing beneath the weight of absence.

This past Sunday my pastor, Kraig Wall, gave a poignant Palm Sunday message. For a few minutes, he focused our attention on the women who followed Jesus. They migrated with Him from place to place, no doubt caring for the multitudes that cried out for His words, His touch, His miracles, the changes He brought into their world. Much like our world, theirs was fraught with political tension. The publicity of the time period was split between two clashing points of view, neither giving credence nor compassion to the other. Rome versus Israel, World versus God, War versus Peace; violence, mistrust, and uncertainty riddling both sides of two people groups inhabiting the same country, the same town, the same neighborhood. And the women? No one really noticed them. They were servants; necessary but not elevated. And so if a few of them wanted to watch from the sidelines and not miss a moment of what the forces around them decided, who would notice?

And it was with that knowledge of their own invisibility that they made the choice to stay close to Jesus as He walked the streets of Jerusalem the days between his triumphant arrival when the crowd loved him, to his bloody assassination, when the crowd despised him. Less than a week between the two events. Less than a week between security and the unknown of shattered plans. And on that day when it all came crashing down around them, when the crowds demanded blood running in the streets, the women faced down death from the front lines. They didn’t go back to a safe place inside the walls of the city where they would be shielded from the horrific scene of watching the One they trusted beyond all else whipped and beaten. Instead, they stood on the edges of the crowd and made themselves bear witness to his torture. After He had carried the cross through Jerusalem and outside of the city up the hill of Golgotha, they again stood in the crowd and watched. They watched the nails hammered into his body, the cursing, the taunting, the stabbing. They watched him slowly suffocate and they watched as the darkness settled in like a cloak. They heard him give up his spirit and they bore witness not only to his death, but to the response of the earth itself as the ground shook and hell broke loose around them. They did not turn their eyes from death. They stared it down, unblinking.

I had never given much thought to what morticians do in detail. I understand the basics, but I’ve never spent time thinking about the process. And then, as I stood at the head of the casket and received many hugs and words of encouragement from a long line of people who loved my Aunt Dee and wanted to support us in our grief, I couldn’t take my eyes off of her ear lobe, where clear embalming fluids had pooled and are now set like a glass puddle in the shell of her ear. I had all kinds of rapid-fire thoughts and feelings after seeing that embalming fluid, like a glaze, collected and held against her skin so unnaturally. There was nothing left inside of her to hear anything we had to say. There was no one living in that skin anymore to be able to feel the sensation of something cold puddled and sealing her ear. But I watched it. I stared at it. I studied it. Why? Perhaps because it displayed more evidence of death, of the finality of parting, even if only for a time.

The finality involved with the week between Palm Sunday and Easter is transitional. It seemed final. It seemed horrific and absolute. But because the truth of Jesus is more, just more, the finality of death was a façade for him. The term “passing” was literally true for the Nazarene, the God-Man who could pass between death and life as easily as we pass between rooms. It’s probably not much of a challenge when you can author life on a whim. And because He can, we can. His name allows us to live as the resurrection people. And because I choose to live under His banner, I can look around me at the changing landscape. Where the trees were barren, they are now growing heavy with blooms. What was cut back in the fall is now regrowing. The sap that was frozen in the snow and ice of January is warming in the sun of spring and beginning to flow in the veins of the trees, bringing new life and beauty. The landscape looks different. It looks like life. It looks like my resurrected joy.

 

Advertisements

Changing Landscapes: Winter

In my surprising new career as office manager for Arbor Art Tree Care, Inc., I’ve learned all kinds of things about arboriculture: varieties of arborvitaes, the value of a sharp, precise cut, and perhaps one of the most important green thumb rules, that there is a proper season for everything.

The warm months are the growing season, when everything is lush and full in vibrant greens, weighted with blooms and fruit. Beneath the bark, deep inside the tiny green stems beneath our feet, flows a warm sap, an elixir of life that forces growth, beauty, and potential. The trees stretch upward, the flowers blossom, the weeds grow too tall, the birds sing, the bees buzz, and there we have it: the season of life.

But then the weather changes and we move into a new season when cold air blankets the trees. Life doesn’t end, but it stills. The sap flowing through the veins of the trees slows. The leaves spend their last days in an explosion of color, and then it’s done. The trees enter a season of rest and what I’ve learned is that this is the time to make those deep, sharp cuts.

The dying season, when the air is cold, the world is gray and brown, and those beautiful, strong branches are cut back, trimmed off, and thinned down. It’s a season of displacement, weightless shifting from one form to another, disfigurement, and a lonely sense of loss.

I’m not sure anymore if I’m talking about the trees or the landscape of my heart. The dying season looks a lot like another empty place setting at the Thanksgiving table this year. It sounds like a voice I no longer hear, and it feels like a deep, searing cut.

When my father-in-law passed away on the twenty-second of September, the landscape of my life changed suddenly and drastically. It grew to encompass members of his family I did not know and in the same moment, pieces of it were chipped away and blown apart. Like the heinous acts of mountain top removal in eastern Kentucky and Tennessee, the force of change was violent and I am hollowed, a reed instead of an Oak.

My father-in-law was an exceptional man. He was proud to serve his country in the United States Navy and if you ever decide to travel to Antarctica, you can stop by the research center he built for the scientists who like to live on the edge of the world and study our climate. With time and rising temperatures, I doubt the dock of ice he built is still intact. But his dusty thumbprints are on timbers and frozen nail heads somewhere in the blank white space of Antarctica.

His thumbprints are elsewhere, too: Spain, Guam, California, Memphis, and all over Hopkins County, Kentucky. Hundreds, perhaps thousands of folks lined up in the 80s, 90s, and 2000s to have Jim Mitchell build or remodel their home or business. He didn’t cut corners and he made sure the job was done right and done well from the foundation up. His employees, made up largely of family members, will tell you they had to jack up more than one foundation and repour it to satisfy his perfectionist tendencies.

His thumbprints are all over his family, too. I’m proud of Jim for a lot of reasons. But the lengths to which he would go to do what was best and right for those he loved was valiant and exuberant.

After growing up in various forms of dysfunction, Jim threw himself headlong into the alcoholism he knew so well and added recreational drug use for the fun of it. Generations of Mitchell men had carved a path so straight and wide in that direction, it seemed a foregone conclusion that Jim would pick up the hammer of generational substance abuse and pound the nail of addiction further into himself and his sons. And for a while he did. But there came a day when Jim met Jesus and everything changed. Sometimes it takes a radical meeting, an earth shattering revelation of truth, to blow apart the manacles of addiction and the furrowed avenues of limited understanding. King Jesus did that for Jim. Abruptly the landscape of his life changed and he kicked his addictions and reversed his behavior patterns of dysfunction. The man I fell in love with and married is a testament to the changes Jim made in his life and household. But he wanted more. He wanted those changes for his friends, his clients, and most importantly, his brothers. He wanted a season of life for them. A season so full of growth and vitality that all the long winters that had come before among the men in their family would be abolished, their landscapes changed to bear the weight of the height of summer.

Jim spent years striving toward a life of abundance for himself and his family. In the midst of that striving there were challenges and setbacks, unexpected pitfalls and lonely days of doubt and grieving. I find myself in similar days of doubt and grief, days of yearning when I am heartsick for Home and rest, for clarity and peace.

The trees around me are slowing, growing still and quiet. Every day the guys on our tree crew ascend the urban canopy of Nashville to remove the dead and dying limbs and trees. They cut back the branches that encroach on our homes and trim away the overgrowth. The saw blades buzz sharp and sure and the cuts are perfect. Some of those cuts will lead to new life in the spring, bringing opportunities for new life and beauty. Some of those cuts are the final death blow and like the grief that has changed the landscape of my family forever, the hillsides and walkways where those trees once stood will look different tomorrow, next month, and next year.

Winter. The dying season. I live it anew each day and in the midst of the cold grief I find I am grateful for a couple of things. Autumn is a season of harvest and celebration, when our thoughts turn toward family and bounty, beginning with Thanksgiving and reaching the pinnacle of celebration and joy at Christmas. This year in particular I find myself not only grateful but relieved. I’m relieved that Christmas carols are beginning to play and decorations are coming out of sheds and closets a little at a time. It’s not because I enjoy the shopping or the extra things to fit into my already hectic schedule. It’s because I know there will come a moment when all of it fades. I’ll be somewhere alone and quiet and my vision will narrow to focus on the nativity scene where, in that moment, I will acknowledge hope. I’ll stand or sit or lay for a while and let myself feel hope. I’ll let it sink into my skin and lighten my heart, lending my soul buoyancy as I rest in the promise of Immanuel, God With Us. And then I will lift up my eyes from the nativity to look past you, past me, and see that beyond the grief and death of winter there is more. It is as solid and real as the rough edges of freshly cut wood, crossed at His heart, dripping with the elixir of life.

Jim and Ben

Lyme Disease: Jessica’s Story

My earliest memories of my friend, Jessica Pitzer McLaughlin, stretch back to the nursery at First Presbyterian Church in Madisonville when we played at Ms. Ruby’s feet while she rocked back and forth in the rocking chair in front of the window. We drank Sprite out of pretty, green glass bottles and raced each other up and down the long hallway. We logged hours in that church, on youth group trips, and marching with the Madisonville North Hopkins Marching Maroons. One of my favorite memories of Jessica is standing out on the parking lot during band camp, all two hundred of us at attention, our sneakers melting to the asphalt, while the propeller on Jessica’s rainbow whirly cap spun like she was about to take off into the breeze. The whirly propeller hat became synonymous with Jessica in my head: quirky, completely adorable, wild and crazy, and ten kinds of fun wrapped up in a cute package.

Jessica in Hats

I remember the band competition at MTSU when Jessica marched off the field and was taken to a hospital for what we later heard was walking pneumonia. I thought it was strange at the time because I didn’t remember her being sick. What I didn’t know is that while out on the field, Jessica completely forgot where she was and what she was doing. Later that night her neck and head hurt so severely they were concerned about meningitis. But it wasn’t meningitis and now we know it wasn’t pneumonia, either. It was another flag in a series of warnings her body was giving that something was seriously wrong. It took more time and a lot more misery before Jessica finally found a name to apply to the body she could no longer control: Lyme Disease.

Jessica doesn’t remember a time when she wasn’t completely cocooned in the knowledge that Jesus is real and He is her Savior. She does remember consciously making a decision to follow him at age seven during an Amy Grant concert. But she says she was born with a little extra Holy Spirit than most people. She came into the world with the Light of God shining brightly, joy bubbling over in her spirit, and a zest for life that buoys everyone around her. Even life as a preacher’s kid didn’t dampen her love for God and other people. She acknowledges that being a PK was difficult because people often felt they had a right to pass judgments on her behavior that were unfair and at times brutal. It was like living in a glass house in which others decide they can and should scrutinize her and her family and share their judgments with others in negative ways. But, she says, her faith was nurtured and she grew in a spiritually rich environment that fed her already exuberant love for God.

Jessica B&W

That faith and love for God would be tested in extreme ways as her body began a slow downward spiral. She says she remembers becoming extremely fatigued during her junior year of high school. For an entire month she would get up and go to school, but be unable to keep herself from lying down in the floor by second or third period. Each day she was sent home and the total time accrued ended up being thirteen days that month. She jokingly referred to it as the “Laying Down Disease.” But she recovered and life moved on. It was another flag, another warning sign in a series of warning signs stretching back to age eight, when she woke up at Girl Scout Camp and did not have enough strength to move her legs to get out of bed. Jessica clearly remembers the camp director having to come to her cabin and help her to breakfast, still dressed in her pink Minnie Mouse nightgown. There were other strange phenomena, other warning signs along the way, but they were always diagnosed as other things, treated as such, and forgotten.

Jessica got through high school and college by taking a lot of Ibuprofen. Anytime she didn’t get enough sleep or she became stressed, her body would ache. The pain was all over and Jessica says she can’t number the hundreds of Ibuprofen pills she took over the course of those several years. She pushed through feeling bad and lived her life. She pretended nothing was wrong and ignored the warning signs. On the outside she was a young, beautiful, vibrant woman with everything going for her. On the inside, her body was slowly dying.

In April of 2001, Jessica was in a car accident on I-40 leaving Memphis. She was heading to Nashville for a friend’s wedding and hit a deer going 70mph. She then got rear-ended by a semi-truck and ran off the road into a ditch, narrowly missing a guardrail head-on. She walked away from the accident with only a few burns on her arms from the airbag and a bad case of whiplash. She spent the next year trying to get her neck and back to cooperate and the pain to lessen. But as time went on, the rest of her body declined. She felt the need to get up every morning and do yoga because she was so stiff when she woke up. She attributed it to the accident. Then she began having periodic flu-like symptoms. When those symptoms would come on, she would go to bed for a day and sleep them off. At the time she thought she had an amazing immune system, able to ward off bouts of the flu with just sleep. But it wasn’t the flu, and it wasn’t repercussions from the accident. Eventually her mind became foggy. She wasn’t able to multitask and handle stress like she used to. She was having trouble focusing on tasks and thinking things through. Her heart began to feel stressed and eventually she became so exhausted so much of the time, she feared that if she stopped, if she gave herself permission to go to bed and rest, she would not be able to get up. The exhaustion permeated everything about her to the point that Jessica feared giving in to it would end her. So instead she pushed. In her words, she became a fabulous actress. Since she looked completely normal on the outside, she could dress up and look beautiful, act out her part of being the bubbly, vivacious Jessica she’d always been, and no one knew how utterly miserable she felt.

But acting can only take a person so far. Jessica could not keep up the façade. One day a friend gave her “permission” to skip out on her responsibilities and go to bed. Jessica did and didn’t get up for two weeks. She went to the ER and was diagnosed with “husbanditis” because she was a newlywed. Then she was told it was chronic fatigue. A different doctor told her she had mitro valve prolapse and needed to be on heart medication for the rest of her life. Another doctor told her she simply needed anti-depressants for anxiety. None of it made sense. None of it seemed to explain everything or anything. Finally, Jessica’s mom, Berta Pitzer, talked to her about a friend who had Lyme Disease. Jessica went to her PCP and took the test. It was negative. Then she answered a questionnaire and had over fifty of the symptoms of Lyme Disease. At that point she went to a Lyme Literate Medical Doctor, got retested and finally diagnosed.

Jessica agrees that it is helpful to have something to name the thing that plagues you. Not knowing is worse. But knowing didn’t fix it. She began a three year course of antibiotics and for three months of that time, the antibiotics were pumped directly into her heart and bloodstream via a PIC line. So with PIC line in place, she kept living, not giving up a moment of her life. She drove from Memphis to Madisonville to photograph my wedding, smiling and dancing, disguising the pain. I didn’t understand the sacrifice she was making or that the next day, while I was flying to Florida for my honeymoon, she would barely make it out of bed. Jessica wanted a normal life, as do all our friends and family members who suffer from chronic illnesses and high levels of pain. They become great actors and we might never know unless we look close enough to see the cracks in their carefully crafted masks.

The three years of antibiotics helped, but could not cure her. Eventually the damage they were doing to her body outweighed the positive benefits and she stopped taking them. At that point, she began searching for homeopathic remedies and supplements to help keep her body going. She has taken many different herbs and vitamin supplements, but has found the most help in using Pure Therapeutic Essential Oils and enzyme therapy. The oils have given her life back and brought her to a high functioning level, with hopes for remission in the future. Jessica also uses an infrared sauna thirty to forty-five minutes per day as well as physical therapy stretches and exercises to combat muscle atrophy and joint pain. (For a full list of Jessica’s healthcare protocol, visit http://jessicaframedup.com/my-health-protocol/.)

The road from health and wholeness to a struggle for survival has been filled with potholes of depression, anxiety, anger, disbelief, denial, and embarrassment. Jessica is quick to point out that a diagnosis of Lyme Disease carries with it a stigma of shame. Because most medical professionals are not Lyme Literate, because the CDC classifies Lyme as curable with short-term antibiotics, because state medical boards eliminate the licenses of doctors who treat Lyme differently than what the CDC and IDSA guidelines call for and insurance companies won’t pay for treatment or cover those doctors, and because the general public does not understand what Lyme is and what it does to the human body, Lyme Disease patients are by and large ignored and shamed. They are made to feel as if they are crazy, or perhaps mentally ill with either depression or hypochondria. They are given labels of Chronic Fatigue Syndrome, ALS, Fibromyalgia, MS, Parkinson’s, Alzheimer’s, Autism, Depression, Anxiety, Migraines, or other auto-immune diseases and treated inappropriately. Their families and friends often do not understand why they can’t just “get over it” or “snap out of it.” They often lose their jobs, fall into the depression they were labeled with originally, and many, unfortunately, choose suicide in order to escape the physical, emotional, and mental pain of Lyme Disease and the ramifications from it.

Jessica and Alan Wedding

At the bottom of her lowest low, Jessica, too, wished for death:
“I was bedridden. The pain was from my jaw to my toes literally. Imagine every muscle and tendon in your body being sprained and all your bones feeling as if they are shattering as you move on top of having the worst flu of your life. I had to be assisted out of bed but they had to lift me by the back of my neck because I couldn’t have my hands or arms touched. I was literally decaying and dying on the inside. It would take me two hours to eat a bowl of soup because I could barely move my mouth or lift my arms. I couldn’t handle any light so I would lay in the dark with my blackout curtain on my window praying. I was in the darkest hell possible. Everything around me was darkness and the pain was death. I wanted to die. I prayed that God would take me home because I wasn’t living anymore, I was only surviving. To get up and pee would cause me to shake uncontrollably because the pain would send my body into shock. I imagined myself getting up out of bed and walking out of my life. Just walking and walking and never coming back. I wanted to run away from it all. I could see myself walk out of my room and down the stairs outside my apartment and across the field and down the street. I would walk and start a new life somewhere else where there wasn’t this abuse. The only problem was I couldn’t walk. So, I couldn’t run away. Silence and darkness and pain were my life for months on end. I caught strep throat during this time and almost died. I spent seven days sleeping on the bathroom floor because I was so nauseated and I couldn’t walk so leaving the bathroom wasn’t an option. The sores in my throat spread onto my face. My immune system was gone and I wanted to be gone, too. Days, weeks, months of being debilitated like this. Praying the entire time. I became very close to Jesus during this time. My faith was very strong and I was ready to be home because this was definitely NOT my home. I remember sometime during this time my husband, Alan, asking me to fight for him and to not give up. So, I did. I fought for my life because he asked me to. I had nothing left and was ready to leave but he wanted me to stay. So, that is when I decided to not give up and fight to get my life back.”

So she fights, one day at a time. She has slowly but surely taken back ground in her life. She has managed to be symptom free for a while twice. But any time there is physical trauma to the body, her health deteriorates rapidly. At any given time, Jessica’s pain level brings her to the point of tears. Her joints ache, her bones ache, her muscles are sore, and her skin hurts so much that touch is painful. Her health protocol of oils, infrared heat, and stretching helps. But often, Jessica chooses to ignore her pain level and go about the business of living. Her children, she says, have no idea that she is in so much pain so much of the time. They know mommy’s hands and arms and legs don’t work very well and they know that she gets tired a lot. But they do not know the extent of her condition and that’s the way she wants it. Jessica says it is one of her most sincere desires to roll around in the floor and play with her kids or chase them around the yard. But at all times she has to weigh the consequences of what will happen to her body if she pushes her level of exertion. If she does what she wants to do, will she have enough energy to make it through the rest of the day? If she pushes all day today, will she be able to get out of bed tomorrow? Jessica likens this to the Spoon Theory other chronic pain sufferers are familiar with: (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/).

Jessica and kids outside

Through it all, however, Jessica has never lost her faith in God or her joy in being His child. She trusts Him. She loves Him. She knows Him. And in that knowing she feels comfortable telling Him when she’s hurting, when she’s angry, when she doesn’t feel that she has enough left to give anyone. She communicates her heart to Him and her Daddy God, in turn, is faithful to her. He is faithful to be there, right by her side, on this journey she did not choose and does not understand. He speaks to her through scriptures and songs, ever-present, ever-loving, reminding her daily that this place, this world, this body, is not her Home. “Don’t let this throw you. You trust God, don’t you? Trust me. There is plenty of room for you in my Father’s home. If that weren’t so, would I have told you that I’m on my way to get a room ready for you? And if I’m on my way to get your room ready, I’ll come back and get you so you can live where I live. And you already know the road I’m taking.” (John 14: 1-4, MSG)

In the mean time, Jessica would like to see a few things happen for the general public and the medical community at large. She would like widespread education about what Lyme Disease is, what it does to the body, and how it is best treated. She would like the CDC and IDSA to overhaul their current guidelines, since she is living proof that they are completely backwards and ineffectual. She would like the government to help control the tick population as it does for mosquitoes, and to enforce stricter guidelines for the blood supply in the United States so that Lyme is not transmitted undetected through blood transfusions. She wants more research so that we know why it is such an epidemic and pandemic. Is it being transmitted other ways? By fleas, mosquitos, or unprotected sex? She wants more effective testing so that people don’t walk around for years misdiagnosed. In short, Jessica wants Lyme Disease to be taken seriously, researched, understood, and treated with the importance and attention it deserves.

Visit http://lymediseasechallenge.org/the-facts/ to learn more about how to help.
Check out the Take A Bite Out Of Lyme Challenge with Jessica’s video:

It has taken a long time for Jessica to come to a place of acceptance with Lyme Disease. She wrote “My Secret Life with Lyme Disease” to give a voice to the millions of others suffering and to raise awareness of what it is really like to have Lyme Disease. (http://jessicaframedup.com/secret-life-lyme-disease/) She didn’t choose it and she doesn’t want to live the rest of her life with it. But there is no cure and she has come to the conclusion that she has to do what is necessary to live her life with the joy she craves. It’s an intentional choice for her and not a byproduct of happy circumstances. Joy is her decision because she wants it.

There are practical things that would help. First, the expense involved with treating Lyme has sapped all financial avenues available to Jessica and Alan. She can’t afford to drive the six hours to Illinois to visit her LLMD so she follows the protocol he’s given her on her own. Unfortunately, she can’t afford everything on the protocol so she does what she can. Because she spends so much money on her health, it is difficult to afford healthy foods. Even when she does have healthy foods, the energy she needs to combat the level of pain necessary to fix healthy meals for herself, her children, and her husband is hard to come by. She needs help and encouragement with her physical therapy regimen, but can’t afford to visit a physical therapist. She’d like to use acupuncture as part of her protocol, but she can’t afford to see an acupuncturist. Massage therapy is vital to her staying functional, but she can’t afford to see her Licensed Massage Therapist as often as needed. Volunteers with these skills would be a Godsend, as well as someone to just help with household chores and cooking. Daily life is difficult and the responsibilities of running a household are sometimes not conducive to the level of pain Jessica lives with.

Jessica Family Christmas

Her biggest hero is her husband, Alan, who swept her off her feet as her high school sweetheart and champions her each and every day. One of the biggest ways Jessica says he helps her is by treating her like a normal person. He encourages her to be strong and tough, to do all that she can and not to give up. She says they have an agreement that they don’t talk about the struggle unless necessary. She doesn’t want to talk about how bad the pain is. She doesn’t want to outline what she was or wasn’t able to do on any given day. Instead, he finds ways to make her laugh, he supports her, and on the really bad days, she specifically asks for what she needs. He doesn’t enable her to give up. He makes her able to keep living and reaching for more. He supports her in her work and mission as she pursues REALLY living and bringing life and healing to others’ lives.

And on the dark days, Jessica is thankful that God gave her an extra measure of His light and joy:
“The light He gave me when I was born has baffled many people to the point it kind of made me uncomfortable. People used to always ask what I had that was different. What drug was I on? Why was I different? People would think my joy and laughter were fake. I felt like I needed to tone it down. But God knew He needed to give me light so bright that when complete darkness set in on my life there would always be at least a flicker left. He didn’t want my flame ever blown out. He knew what my future held. He knew the path I would have to walk. He knew that I needed joy and wisdom beyond my years so that I could endure this and still have joy and still be me. I’m still me inside.”

Jessica and Pitzer Family

Fighting Lyme Disease is hard. It’s ugly and lonely and no one wants the fight. But the truth is that any of us could contract this disease at any time. If you live in an area of the world where ticks also live, you are vulnerable. Antibiotics help and people do get better if treated immediately. But there are many more who go years without treatment, getting misdiagnosed time and time again, and never getting better. You may know someone who suffers as Jessica does, with or without the label of Lyme. Knowledge is power. Support those who are currently researching Lyme and raising money and awareness. Support those who suffer and love them without condemnation for the days you don’t understand and the disappointments you hold when they don’t meet your expectations. Empower them and give them reasons to keep fighting. Invest in their lives and invest in their fight. It could be your fight tomorrow.

For more of Jessica’s story, please visit her blog at http://www.jessicaframedup.com. For more information about Lyme Disease and the mainstream fight against it, check out this article: http://hub.jhu.edu/2015/05/26/lyme-disease-research-center#.

Jessica and Kids 2

And when you need a pick-me-up, jump into Jessica’s joy:
Healer by Kari Jobe – https://www.youtube.com/watch?v=Yzejd6r9DwE
(When I need to depend on God for my healing.)
Still by Watermark – https://www.youtube.com/watch?v=DXXw_pqqdmY
(When I want to go but I can’t and when I need to know that I am not in control and God is.)
I Can Only Imagine https://www.youtube.com/watch?v=BRPGRdbGHSs
(When I need to imagine being in the presence of God instead of in this life filled with misery.)
If You Want Me To by Ginny Owens – https://www.youtube.com/watch?v=qVYRc7LtvUA
(When I need to be okay with this path that God is allowing me to walk because it doesn’t make sense to me.)
What Does It Sound Like by Bethel – https://www.youtube.com/watch?v=k4peIh5Ou8k
(When I need to feel heaven here on earth.)
Lay Me Down by Chris Tomlin – https://www.youtube.com/watch?v=1N2SbY3dJuM
(When I need helping laying down my own life and my own desires to walk the path God has before me.)
Do Something by Matthew West – https://www.youtube.com/watch?v=b_RjndG0IX8
(When I feel like it isn’t worth it to step out and help others find healing… God wants to use me)
God’s Not Dead by Newsboys – https://www.youtube.com/watch?v=S_OTz-lpDjw
(When I have doubts that God is even real or there for me… I remember the love that only God can spread)
Greater by MercyMe – https://www.youtube.com/watch?v=S_OTz-lpDjw
(When I feel inadequate for doing this life… He is greater and living inside of me! It doesn’t matter what my weaknesses are)
Where I Belong by Building 429 – https://www.youtube.com/watch?v=he32vwlKQPY
(Reminds me that all the misery I’m going through will end someday because this is not my home and someday I get to go home!)
Some Nights by Fun – https://www.youtube.com/watch?v=qQkBeOisNM0
(This spoke to me as I was so lost at times not understanding or know what to be or how to be. God was there and I was at war but I felt bewildered in this fight for my life.)
Horses by Yes Nice – https://www.youtube.com/watch?v=YAXWW6HJ3Cw
(When I needed a fun silly pick me up about the battle I was in that someday it would be over and that I would be delivered! I get to go home someday!!)
Holding Nothing Back by Jesus Culture – https://www.youtube.com/watch?v=DW3xgo6NNk4
(When I need to declare that I will fight and I am free of this misery because of Jesus and there is nothing that is going to hold me back in this life because of who I belong to!)
This Is How We Overcome by Hillsong – https://www.youtube.com/watch?v=aKMSWd1ot3E
(This is how we overcome. We let God turn our sorrow into joy.)
In The Light by DC Talk – https://www.youtube.com/watch?v=vrxXaeCLf-w
(I will always walk in the light… my gift is sharing the light… when I stray it just doesn’t work for me! I need the Lord to be my Light always! I am human and I have all the usual human struggles… this song speaks to that!)
Counting On God by Desperation Band – https://www.youtube.com/watch?v=XNSBBvxGdWg
(My fight is against Evil and I’m counting on God to bring me joy in all of it.)

Isaiah 40:31 – I will always focus on this scripture because I will continue to wait on the Lord for strength and the ability to run again!
2 Corinthians 12:8-10 – At first I didn’t think of it as a gift…
James 1:2-4 – Consider it a sheer gift when test and challenges come….
1 Thessalonians 1:6 – Live out your faith in your suffering.
Job 40:1-15 – When I think I know what is best I read this to put myself in my place… under God.
Job 42: 1-6 – When I need to apologize to God for thinking I know what is best.
Ephesians 2: 7-10 – When I need to trust God to do good and join Him in that despite my circumstances.
Hebrews 11 & 12 – Having Faith in what I don’t see and finishing strong no matter what
I Corinthians 13: 1-13 – Love conquers all
Matthew 5: 14-16 – Be a light to this world no matter what your circumstance
Proverbs 3: 1-12 – don’t assume you know it all
Psalms 119:105-112 – I’ll never turn back
The book of Ecclesiastes – Everything is just smoke if God isn’t the reason for living. When I faced that the world is broken and miserable and there is no good here on earth (without God) I searched for meaning and how to have joy in the midst of the terrible misery. This book taught me a lot and brought more wisdom to my life that truly the world is a very broken place and my rose colored glass have been completely broken now by the pain I have experienced. There is no good at all in this world and there is not point to all of this… unless God is in it. So, that is why and how I find joy. God is in it all and he is calling us all home. If He wasn’t here my life would be worth nothing and I can’t believe that is true. Reading A life Well Lived by Tommy Nelson is a great study on the book of Ecclesiastes.

Lanita’s Story: FoxG1

Lanita’s pregnancy began and ended just like every other normal beginning to a baby’s life. She was a science teacher at Madisonville North Hopkins High School, whose curriculum included genetics. She was married to her love, Eric, and life seemed to be everything she could have asked for. Ryder was born healthy and beautiful and the next few months were filled with the normal moments of having a newborn.

Lanita and Eric Copas

Lanita and Eric Copas

At the end of his seventh month Ryder was a bit behind other kids his age. For example, Ryder didn’t sit up unassisted when he should have. At that point the doctors weren’t concerned and neither was Lanita. One Monday, however, she noticed that Ryder’s eyes would flicker to the left and he would giggle. That Thursday she called the doctor to mention the strange behavior and was told to immediately bring Ryder in to be seen. The doctor reported he appeared to be fine but ordered an EEG to be safe.

That Thursday began a whirlwind journey of medical tests and trips to doctors hundreds of miles apart in every direction, ultimately culminating in a diagnosis for Ryder. Genetic testing showed that Ryder is a FoxG1 kid.

The FoxG1 mutation is not widely documented or commonly understood even in the medical community. In fact, according to Ryder’s geneticist, he was only the eleventh child ever diagnosed with the rare genetic mutation. Lanita soon discovered her son was part of an elite community scattered throughout the world with no known organized support system and no one source of information on how to deal with the astounding number of issues associated with Ryder’s new diagnosis.

The FoxG1 gene is responsible for making a particular protein that plays a vital role in brain development before birth. This protein, called forkhead box G1, is critical in the development of a part of the embryonic brain called the telencephalon. The telencephalon eventually develops into large and critical portions of the brain that control voluntary activity, language, sensory perception, learning and memory. (1)

FoxG1 Syndrome is caused by mutations in the FoxG1 gene. Many times the syndrome is a result of a deletion of that gene. The deletion causes a disruption in the function of the forkhead box G1 protein, which causes the brain to develop abnormally. As a FoxG1 Syndrome child develops, he or she will experience a variety of symptoms: inconsolable crying during the first year of life, delayed gross and fine motor skills, teeth grinding, limited purposeful use of the hands, involuntary muscle movements, a smaller head size, seizures, spontaneous laughter, higher than average pain tolerance, increased susceptibility to illness, constipation, sleep disturbances, swallowing issues, nonverbal or minimal word approximations, temperature regulation issues, small hands and feet, an exceptional love of water and music, and more. Each child will have a different combination of these and more issues, depending on the specific mutation of the FoxG1 gene. (2)

Ryder is unique even among his Foxy friends. Instead of a deletion of the FoxG1 gene, Ryder has a duplication, which means the entire gene is duplicated throughout his DNA. That diagnosis singled Ryder out as the only known child in the world to be born with this already rare genetic mutation.
Ryder Copas
Ryder Copas

It took a lot of research on Lanita’s part to begin to understand her son’s condition. Since no one knew much about FoxG1 Syndrome, Lanita began using her own knowledge and understanding of genetics to research and reach out to every single doctor, researcher and professor who published anything or had any connection to FoxG1 research. A few months after Ryder’s diagnosis, Lanita found a couple of other moms on a website and blog called Circle of Moms who also had FoxG1 children. Since then those moms have combined the strength of their knowledge and resources and begun the International FoxG1 Foundation (2). This website is a source of information and support for those who find themselves living with the miracle of a Foxy child.

For Lanita, there have been many moments of startling beauty set against the backdrop of everyday struggles and difficulties. Since Ryder was the only child in the world at the time of his birth and diagnosis with a duplication mutation of FoxG1, no one knew what his abilities and disabilities would be. Originally, Lanita and Eric were told that Ryder would never walk, talk, or communicate with them. They prepared for the worst and fought against that prognosis. They fought against Ryder’s delayed motor skills, delayed speech, and the major sensory issues he struggled with. They remained patient, continuously working with their son and encouraging him to achieve more than what the doctors said he would. And he did. When other children learned to walk, Ryder learned to crawl. When other children were mastering language, Ryder mastered what the doctors said he wouldn’t. At nineteen months, Ryder walked independently and never looked back.

Due to his early diagnosis, Ryder was able to enroll in Tennessee’s Early Intervention program where he received speech and occupational therapy. Within a year he phased out of the program due to his age, but he still goes to private speech and occupational therapy to continue developing his ability to communicate as well as the coping mechanisms necessary to reconcile the outside world with what happens in his brain. Since Ryder’s birth there has been one more child born with the same FoxG1 duplication that Ryder possesses. However, that child is younger than Ryder and therefore, Ryder carries the honor of being the trendsetter for the world, blowing past doctors’ best guesses at what he will be able to do. He has demolished their expectations and continues to grow and thrive.

Each milestone he reaches is cause for celebration for his parents. Lanita says she worked diligently on small things with Ryder. Over and over again she encouraged him to stack stars on a ring and push the buttons and twist the circles on a toy that makes animals pop up. He couldn’t complete those simple tasks for a long time. But persistence paid off and one day, his skills caught up with her determination and he did it. Other milestones include holding his own bottle, feeding himself with a spoon, saying mama and daddy and I love you, using the potty, holding a pencil, recognizing numbers and letters, and her very favorite, singing the blessing at mealtimes: “Going from being told he would never talk to hearing him say, ‘God is great, God is good,’ just melts my heart.”

Perhaps Ryder’s largest issue is his most public one. Ryder does his best when his life goes by a normal routine. When things go according to his understanding and expectations, he thrives. But when his routine is upset or his expectations of an activity are not met, his brain reacts in a big, explosive way. This also happens when his senses are overloaded with too much noise, light, or activity. When these things happen, Lanita calls his response a complete meltdown as Ryder struggles to process the break between his expectations and his reality. There is no amount of firm discipline, comforting or talking that will fix the situation. Lanita and Eric have learned that Ryder has to be in the middle of the resulting explosive emotions and physical responses until his brain resets. Sometimes it lasts twenty minutes. And when finally he has screamed it out, he reaches out to them for comfort and puts himself back together.

For Lanita, this has been the hardest and most personal issue to face. Because Ryder looks normal, people who don’t know him don’t understand that when he has these meltdowns in public, it is due to the way his brain is or isn’t processing a situation and the resulting emotion. They most often decide amongst themselves that Ryder’s behavior is a direct result of bad parenting and make it a point to let their disgust be known to Lanita and Eric. They make comments loudly enough to be heard by everyone around them, including Lanita and Eric. These strangers who do not know Ryder or his specific situation glare, point, roll their eyes, and generally ostracize Ryder while he deals with his meltdown. It is an emotional point for Lanita, who wishes people could see her son as he is: a unique child who has already conquered insurmountable odds and works daily to be who God designed him to be, rather than what he was diagnosed to be.

Other sensory processing issues Ryder deals with include brushing his teeth, eating oddly textured foods like chips or ice cream, or being kissed on his face. At one point, he absolutely could not handle any of those things. But occupational therapy has helped him overcome some of those sensory issues and helped Lanita and Eric learn how to help Ryder process the things that his brain cannot automatically comprehend. One of the things that has helped the most is using the Wilbarger Brushing Protocol, which is a technique that involves stimulating the whole body, beginning with arms and moving down the body with a sensory brush. The technique, which is used by trained therapists or parents who have been trained, allows the brain to become accustomed to touch before processing touch in the most sensitive areas. This brushing protocol has helped Ryder tremendously and has allowed Lanita and Eric to more easily brush his teeth, trim his nails, cut his hair, and finally kiss his face.

Lanita, who has been a Christian since age thirteen, has never doubted God’s presence in Ryder’s life and in his struggles. She has known since his diagnosis that God has a plan for her son and even when it is very difficult, she trusts the unseen, uncreated One that created her son just as he is and walks with him each day. She has seen the hand of God act in a variety of ways on Ryder’s behalf as well as her family’s. She believes God’s grace enabled them to sell their house in Kentucky in twenty days, allowing her husband to accept a new job near her hometown in Tennessee within a month of Ryder’s diagnosis. Being surrounded by family during such a tumultuous time period undergirded Lanita with the strength and support she needed as she fought for Ryder and the milestones he eventually achieved. She has also seen God’s love for her poured out in the people around her, from family and friends, to home health nurses and other medical professionals. The Body of Christ rising up to support and love Ryder and his family has meant the world to Lanita.

Last year Ryder became a big brother to Asa Glenn, named for his grandfather who went Home before his namesake’s birthday last year. It was a big decision for Lanita and Eric to decide to have another child. The fear that another genetic mutation could occur stared them in the face. Doctors assured them there was only a 1% chance of the same genetic mutation occurring. Since neither Lanita nor Eric carry the mutation themselves, it would have to result from gonadal mosaicism. However, because of Lanita’s new Foxy family with the International FoxG1 Foundation, she knows that 1% doesn’t tell the whole story. She knows four families that have multiple children with the same mutation. Lanita and Eric faced their fear, however, with faith and with the knowledge that they knew the signs to look for and how to live with a unique child in a world that doesn’t understand his special brand of unique. Asa, however, was born with no genetic abnormalities and is growing up alongside his big brother, completely unaware there is a difference between the two of them at all.
Ryder and Asa

Since the International FoxG1 Foundation was created for information and support for Foxy families, Lanita understands there are now at least 120 documented FoxG1 children in the world. Each child’s expression of FoxG1 syndrome is different due to the precise mutation of the gene in their body. But Lanita encourages parents of Foxy children and all those in support roles to reach out to one another to better understand ongoing research about this rare condition and how it affects daily life for each child. When facing a diagnosis, Lanita’s best advice is to research beyond what the doctor says in order to fully grasp the big picture and find others who understand and are willing to support, even if it’s just a virtual hug on a blog for people facing the same issues you are. Ryder is in a class by himself and is blazing a trail geneticists and doctors can follow to further their own understanding of the miracles of these Foxy children. Each day is part challenge, part miracle, in which the small moments are celebrated alongside the big ones, and the gift of life is not taken for granted.

If you would like to learn more about FoxG1 children or how to support the International FoxG1 Foundation, please visit http://www.foxg1.com.
FoxG1

(1) http://ghr.nlm.nih.gov/condition/foxg1-syndrome
(2) http://www.foxg1.com

#foxg1

Pondering Good Friday

Today, Good Friday of 2015, I ponder not only the Crucifixion of my King, but also the most recent news. Headlines of recent massacres – as recent as yesterday in Kenya – of Christians killed because they believe that Jesus is who He says He is. We call them martyrs.

I’ve been thinking about the actual blood spilled by those martyrs. It pumped through their veins like mine does. Perhaps in those last few moments, it strummed frantically through their bodies, their hearts thumping wildly in their chests. And then it was spilled out. It was released through holes made by bullets, knives, machetes and bombs. It didn’t stay in the air. It fell to the ground where it sank into dirt and sand and stones. It became earth beneath our feet.

And then I think about that earth beneath our feet. He is Lord of All. Lord of creature and creation. In the nineteenth chapter of Luke, I read about the King’s triumphal entry into Jerusalem on Palm Sunday, which we just celebrated. While He rides on the donkey, those who believe that He is who He says He is lay out their cloaks on the road for him to pass over and praise Him, saying: “Blessed is the king who comes in the name of the Lord! Peace in heaven and glory in the highest!” (Luke 19:38)

The Pharisees, or the naysayers, the legalists, the doubters, didn’t like it. They demanded of Jesus that he shut them up. But he refused. And this is what He said: “I tell you, if they keep quiet, the stones will cry out.” (Luke 19:40)

Even the stones will cry out. The stones beneath our feet. They would call Him King. They would praise His name and lift Him in honor. I wonder. What do they cry out when they are soaked with the blood of His martyrs? Are the stones silent then? Does the earth hold its breath, awaiting His response? Or, in some plane we cannot experience in our flesh, do the rocks cry out on behalf of those whose blood leaks in to the unpolished, porous surfaces? In a frequency not identified by human ears, does the earth moan and groan, calling out to Creator, in pools of blood sinking deeper and deeper into sand and dirt?

In 2000, a friend and I visited the concentration camp outside Dachau, Germany. We only spent a few hours in that place. But in those few hours, I was changed. I walked through the museum in a building made of concrete blocks placed one on top of the other by the prisoners who had lived and died in that place. I saw the propaganda put out by the Third Reich. I saw pictures of the prisoners and memorized the angular shapes of their cheek bones and the sunken darkness of their eyes. I walked the grounds where they stood at attention until they fell and were beaten. I entered the officers’ compound where the medical facility sat, dusted properly, displaying the tools used for torture and experimentation. I walked out into a walled courtyard where stone pillars stood, not yet crumbled, with iron manacles at their tops. I looked at the wall where prisoners had been lined up and shot. I really looked at that wall. Do you know what I saw? Amid the bullet holes were stains. Stains of blood from the martyrs who had died for Yehovah. Decades of storms and cleaning could not erase those stains. The blood had soaked in. Pools and pools of it, over and over again. It had soaked in, dying the world dark red.

Did those stones cry out? Did the dirt beneath and on top of their bodies lament? When the trees received their ashes, blown about by the winds of the earth, did they shake in fury or fear?

In the twenty-seventh chapter of Matthew, we read an account of the crucifixion of Jesus. Matthew gives many details of what he witnessed. He says in verse forty-five that from the sixth hour to the ninth hour darkness came over all the land. And then he gives a wild account of what followed the moment of Jesus’ last breath: “At that moment the curtain of the temple was torn in two from top to bottom. The earth shook and the rocks split. The tombs broke open and the bodies of many holy people who had died were raised to life. They came out of the tombs, and after Jesus’ resurrection they went into the holy city and appeared to many people.” (Matthew 27:51-53)

The earth shook and the rocks split. The tombs broke open. Those are terrifying sounds. Loud bangs richoeting from house to house. The moans of those resurrected to bodies long buried. The screams of the people bearing witness to it all. Good Friday was, in fact, a terrible, painful, ferocious day of unrest, fear, and indeed, widespread panic. They could not know that the rocks crying out in the silence left by those who stopped calling Him King and began calling for his death instead would swallow his blood on Good Friday and split in grief, but be rolled away three days later to reveal a King returned, alive, fully healed. How could the people know His blood, poured out in pools that dripped from his side and down his legs, would be what saved them?

We rejoice then, today. We rejoice that there are those among us still willing to call Him King when the enemy calls them out by name, Christian, and spills their blood. We rejoice that when their blood sinks deep into the earth beneath our feet that there is a response. A response of grief, yes. But a response that calls out life from death. A response that says because we are the Resurrection People, death is not the final answer for us. It is a beginning. And perhaps, today, in the quiet stillness of that beginning, we can hear the cadence of a new song. It is the song of the Bride who says to her Beloved, Come.

Living with Chronic Pain: Kristy’s Story

As a self-professed Type A mover and shaker, Kristy Bergstrom was not used to living her life in the shadow of anything. She was successful, healthy, happy and enjoying her life in every way. But on January 1, 2012, her life changed suddenly and unexpectedly. It began simply. That morning she woke up with some lower back pain. At the time, she brushed it off, believing it would work itself out. Shortly after, she flew to Detroit on a business trip and quickly found herself floundering and sinking in unrelenting pain. She says the pain grew in intensity, driving her to seek over the counter remedies such as Icy Hot patches and pain relief creams, and taking up to twenty ibuprofen pills a day. Nothing touched her pain. Ten days into the ordeal, Kristy drove herself to a local Detroit ER in the middle of the night at which point they told her she had most likely pinched a nerve.

Kristy returned to Nashville where she met with her primary care physician. He agreed with the original diagnosis and while the pain was still extreme, Kristy believed that after a couple of weeks of bed rest, she would be back to normal. But by the end of January, the pain was worse. Kristy filed for a medical leave of absence from her job and was quickly forced to drop out of her Master’s degree program because she could not physically attend class. At that point her PCP prescribed muscle relaxers and narcotic pain killers for round the clock therapy as well as a multitude of tests, physical therapy, and referrals to other physicians. Cancer was mentioned, but quickly ruled out. One pain specialist tried steroid injections, but they did not help. On a scale of one to ten, Kristy says her pain level remained constant between an eight and ten. She used ice on her lower back to help alleviate the pain, but was at a loss as to how to truly manage the unceasing agony. “I couldn’t sleep. I barely ate, and spent most nights up in the most horrific pain you can imagine. When my husband would leave for work each morning, that’s when I would allow myself to really lose it. I cried and screamed into pillows. It’s an experience that at the time felt like I was living in Groundhog Day: waking up to the same debilitating existence of nothingness.”

After nearly four months of constant pain and rounds of medical tests with no answers, Kristy was sent to a Rheumatologist. Before arriving to her appointment, Kristy proactively wrote down her history, including every symptom, every doctor’s appointment with dates and names of physicians, every test and result, and sent them all ahead of time. The doctor she was seeing took the time to read what she sent. When they finally met, he told her he felt confident that he knew what the problem was, but wanted to be certain before following through with a diagnosis. After more blood tests and another MRI, Kristy finally had her answer: Sacroiliitis. According to the Mayo Clinic Staff, the simple definition is that Sacroiliitis (say-kroe-il-e-I-tis) is an inflammation of one or both of your sacroiliac joints, which are the places where your lower spine and pelvis connect. Several things can bring on this condition. For Kristy, it was the beginning of Arthritis. Her Rheumatologist told her that he had seen people go twenty years without a diagnosis because the condition is often misdiagnosed as a lower back injury. Kristy attributes her rapid diagnosis to God’s intervention on her behalf and the help of her mother and sister, both nurses, who attended each doctor’s appointment with her and pushed the system to work in her favor.

The diagnosis, while important and necessary, did not change Kristy’s situation. Instead, she found herself facing a new season of life. This new season of chronic pain has required major adjustments and life changes not only for herself, but also for her husband, Matt, and the rest of her support system. Kristy changed positions after coming off her FMLA leave and has since gone to a four day work week to help with her quality of life and ability to succeed with her job. After an open, honest discussion with her husband about the likelihood that there will come a day when Kristy is no longer able to work outside the home, they made the decision together that spending the time, money and energy for Kristy to finish her Master’s degree was not a worthwhile investment.

On the heels of that decision, came an even harder one. After five years in a townhome they both loved and spent considerable time and money renovating, Matt and Kristy decided to put their place on the market and build a one-story home. The three-story floor plan of their townhome was anything but helpful to a condition made worse by climbing stairs. It’s the little things, she says, that we all take for granted that become difficult trials for her. Climbing stairs, sitting in unpadded chairs, and driving are common activities that exacerbate her pain level easily. One thing she sorely misses is the joy of walking her dog outside without pain. Since the SI joints are some of the most important anchor joints of the body that receive constant pressure either sitting, standing, walking, or even laying down, pain associated with Sacroiliitis is easily and often aggravated.

Kristy has found relief, however, in using ice as well as heat, and swimming. She also receives massages every two weeks and has found that those regular massage sessions are especially helpful. The physical pain, however, is just part of it. Living with chronic pain has colored every part of Kristy’s life. Upon reaching her diagnosis, she began going to a counselor who specializes in treating chronic pain sufferers. Talking with someone outside of her family became an important step for Kristy to be able to process all the changes not only to her body, but to her whole lifestyle. The whole situation became a process of grief not only for Kristy to walk through, but also her husband, Matt. At first, Kristy says, Matt struggled to cope with the amount of pain Kristy was in and the complete debilitation she was facing. His immediate response was to retreat into himself and become withdrawn in his own grief and sadness. The trauma and changes Kristy was grappling with hit Matt just as hard as her primary caregiver. Kristy is quick to point out that caregivers require help just as much as the person going through the ordeal. After going through several months of joint counseling, Kristy and Matt have come together as a stronger, more cohesive force against the onslaught of chronic pain. They know better how to communicate with one another instead of withdrawing into their own private grief.
Kristy B and Matt B

It’s that same united front that Kristy is thankful for not only from her husband, but also from her mother, her sister, and her friends. She says the best ways people minister to her are through texts and phone calls, meals made and dropped off, flowers, magazines, and thoughtful gestures such as picking her up and taking her out to run errands. Those kinds of actions support Kristy and Matt both physically and emotionally and are more helpful than well-meaning, but unsolicited opinions and advice on what she should or should not do.

Undergirding the whole journey, from the beginning to the present moment, is Kristy’s unshakeable faith in God. Some nights have seemed unending as the pain overwhelmed her and crushed her strength. But God did not abandon her. Her favorite scripture is Isaiah 41:13: “For I hold you by your right hand – I, the Lord your God. And I say to you, ‘Don’t be afraid. I am here to help you.’” In her guest bedroom, where Kristy sleeps when the really bad nights come, she has placed scriptures on the lamp shade and the wall. Psalm 119:105 states: “Your word is a lamp to guide my feet and a light for my path.” Kristy’s scripture wall has been that guide in the darkest hours, shining God’s steadfast love and faithfulness into her moments of despair. She imagines him holding her hand and neither of them let go.
Kristy B

God’s faithfulness to Kristy has enabled her to push forward. Still a mover and a shaker, Kristy has not and will not stop enjoying her life. She has become not only her own advocate, but a voice speaking out for others who suffer like she does. In December of 2012 she first took part in the Jingle Bell 5K run/1K walk in her hometown of Franklin, TN. Since then she has been asked to serve as their event chair and will shortly join the Middle Tennessee chapter board for the Arthritis Foundation. “I’m very vocal about my condition, much more than most that I meet, because I believe there is power in sharing one’s story. People think that arthritis only affects elderly people and it doesn’t. Even little babies can be diagnosed with it, and by sharing my story, it may help another person – maybe even a child – be diagnosed sooner and, therefore, respond to treatment better. Especially with auto-immune conditions, the sooner a patient is diagnosed, the better they statistically respond to treatment. The disease has less time to damage their body, and therefore, the patient can typically recover more quickly and have a better chance of living a quality life.”

Kristy also reaches out through the world of Twitter. She takes part in weekly Twitter chats with other chronic pain sufferers and not only receives support and encouragement, but provides it as well. After searching various hashtags like #arthritis, #chronicpain, and #invisibleillness, Kristy has found people all over the world in similar situations as her own. Reaching out and building her support system has become integral to her daily fight. “Don’t suffer in silence,” she says. “That’s what the devil wants you to think. He wants you to think you’re alone and you are anything but alone in your pain. Yes, it’s isolating, but there are others out there who do care and do understand what it’s like. You just have to be willing to reach out and find them.”

She gives the same advice to primary caregivers as well as family and friends who find themselves in the role of supporters for chronic pain sufferers. Facing it all alone is not the answer. Communicating and standing together makes the difference.

Since beginning her journey with chronic pain, Kristy has undergone huge alterations in her personal and professional life. Many of them have been difficult. But one in particular, has been sheer fun. After her best friend, Jami, made the decision to move from Dallas to Nashville, Kristy and Jami made the leap to start their own business together. Not content to be driven into seclusion and misery, Kristy takes life by the reigns any chance she can get and from that passion and exuberance, YB Plain was born. YB Plain is a wardrobe styling business in which Kristy and Jami help people to choose a wardrobe that makes them look and feel fabulous in their own skin and in their clothes. “Picking out and putting on a great outfit each day is pretty much the only thing I get to control anymore. No matter how much pain I feel, I think it’s important to dress up and show up for the theatre of your life. The devil may have my joints, but he doesn’t have my fashion sense! It’s my way of saying ‘Screw you’ to the pain.”

That zeal and passion for life is why chronic pain does not define Kristy Bergstrom. It is part of who she is, but it is not all that she is. She is a child of God who knows that one day, in this life or the next, God will redeem her body and give back everything that has been robbed from her. Dreams deferred will be fulfilled and her pain will be no more. Until then, beauty is still born from ashes, one day at a time.
kristy B headshot

(If you are interested in Kristy’s fashion business, please visit http://www.ybplain.com.)

Love in Context

It’s that time of the year for everyone’s favorite Hallmark holiday, St. Valentine’s Day. (Anybody need a spoon to gag yourself with?) Break out your bank cards and get ready for the tasteless, gaudy hoopla and expense associated with this day in which we are to celebrate love.

When I was twenty-one, I had an amazing adventure in Europe. Six months of challenges and mountaintop experiences that helped shape who I am. And one of those experiences happened when I stumbled upon a particularly handsome man playing his saxophone with a band in San Marcos Square in Venice, Italy. It was a pretty romantic scene, truth be told. What’s not to love about Venice? Add in a pretty man winking and smiling and making googly eyes and then playing Somewhere Over the Rainbow to me, and it just doesn’t get much more Hollywoodesque. And you know the really nice thing about it? My train left for Budapest shortly thereafter and I never talked to the guy. Never saw him again. And do you know why that’s the perfect ending? Because the moment is frozen in time, just as it was. I have no idea what faults the man possessed. He could have had a voice that sounded like an Italian Tweety Bird. He could have had breath so terrible it would have dropped a moose at forty paces. He could have had a foul temper or a narcissistic obsession with the bottom of wine bottles. The point is, there was nothing between us but a Hallmark moment. Beautiful? Absolutely. Flimsy, transparent and without substance? That, too.

The concept of love has been under assault for a long time. But our global culture of instant satisfaction and life lived on our own terms has upped the ante in the game of “Love Defined As…” Because the commercialism of Valentine’s Day isn’t the thing that really skews our understanding of what love is. We’re smarter than that, aren’t we? It’s the continuous onslaught on love that’s a little bit broken, a little bit abusive, and a little bit distasteful. It could be okay because it’s sort of love, but there’s always a catch. Know what I mean? How about Fifty Shades of Gray (which I have not read for obvious reasons, not the least of which is my understanding that the writing would make me cry). How about the reports on the news nearly every night of parents inflicting harm on their children? Or the marriage of long-time friends that dissolves due to apathy or unexpected infidelity? We live in a world that is distorted and love, as it turns out, is a commodity. Something to be bought and sold in pretty colors and flashy words, or even worse, something to be subdued and twisted into offensive and defensive weapons. In this world of negative news, love is not valiant and all-inclusive. It is cheap and weak. This love doesn’t save. It abuses. And if that’s all you ever know of love, what’s the point?

The point is there’s more.

William Shakespeare’s 116th Sonnet:
Let me not to the marriage of true minds
Admit impediments; love is not love
Which alters when it alteration finds,
Or bends with the remover to remove.
O no, it is an ever-fixed mark
That looks on tempests and is never shaken;
It is the star to every wand’ring bark,
Whose worth’s unknown, although his highth be taken.
Love’s not Time’s fool, though rosy lips and cheeks
Within his bending sickle’s compass come,
Love alters not with his brief hours and weeks,
But bears it out even to the edge of doom.
If this be error and upon me proved,
I never writ, nor no man ever loved.

Love doesn’t change with circumstances. It doesn’t get better or worse if there is more or less money, if there is a prettier person in the room, or a better offer on the table. Love is stable, unshaken.

And those are nice thoughts. But what does it look like when LOVE, real love, is walked out in day to day living?
Love looks like different people to me. It takes the forms of different moments in my life. When I was toddling around my grandmother Hofmann’s house, love looked her racing up the steps like a flash when she played Hide & Seek with me. It looked like her mother, bent with arthritis, getting down in the floor to play ball with me or carefully cutting out paper dolls in an amazing string of clasped paper hands. When I was a teenager, it looked like my dad drawing a picture of a beautiful tree for me (the only thing I ever remember him drawing) and giving it to a very moody, hormonal me; an olive branch. When I was in college, it sounded like my mother’s voice calling me from across the Atlantic Ocean, as I sat in my host family’s dining room and tried to describe my new life in Sevilla. Eventually love took on the shape of my husband’s hand when it holds mine, and the belly laughs I hear from our children. It smells like lavender baby lotion and it feels like warm arms squeezing my neck.

Love. Is it always that simple? Nope. Sometimes it looks like boundaries. Sometimes love looks like placing distance between yourself and a person who brings out the worst in you, who encourages you to make bad decisions, or whose own love for you, while real and burgeoning, is broken and unhealthy. Love, like the people who wield it, is messy.

So how do we balance the two extremes? How do we measure love as good or bad, as healthy or unhealthy?

1 Corinthians 13
“If I speak with human eloquence and angelic ecstasy but don’t love, I’m nothing but the creaking of a rusty gate. If I speak Gods Word with power, revealing all his mysteries and making everything plain as day, and if I have faith that says to a mountain, ‘Jump,’ and it jumps, but I don’t love, I’m nothing. If I give everything I own to the poor and even go to the stake to be burned as a martyr, but I don’t love, I’ve gotten nowhere. So, no matter what I say, what I believe, and what I do, I’m bankrupt without love.
Love never gives up. Love cares more for others than for self. Love doesn’t want what it doesn’t have. Love doesn’t strut, doesn’t have a swelled head, doesn’t force itself on others, isn’t always ‘me first,’ doesn’t fly off the handle, doesn’t keep score of the sins of others, doesn’t revel when others grovel, takes pleasure in the flowering of truth, puts up with anything, trusts God always, always looks for the best, never looks back, but keeps going to the end…
…We don’t yet see things clearly. We’re squinting in a fog, peering through a mist. But it won’t be long before the weather clears and the sun shines bright! We’ll see it all then, see it all as clearly as God sees us, knowing him directly just as he knows us! But for right now, until that completeness, we have three things to do to lead us toward that consummation: Trust steadily in God, hope unswervingly, love extravagantly. And the best of the three is love.”

If the love in your life attempts to hold you to a standard that you cannot possibly meet, it’s not God’s best love for you.

If the love in your life continually reminds you of your faults, brings back to your attention past arguments, and will not let you move past previous bad decisions, it’s not God’s best love for you.

If the love in your life degrades you, hurts you, misuses you, makes you doubt yourself, makes you feel unworthy or invaluable, it’s not God’s best love for you.

If the love in your life breaks you down, changes who you want to be, or brings out the worst in you, it’s not God’s best love for you.

It doesn’t matter how many chocolate-filled, heart-shaped boxes you receive or how many sugar-coated words you hear. Love doesn’t look like those things. Love looks like you, whole, secure, and healthy. Anything less is a watered-down, cheapened imitation. And you deserve better. You deserve love as God meant you to be loved.

Luke 8: 2-11
“At dawn he appeared again in the temple courts, where all the people gathered around him, and he sat down to teach them. The teachers of the law and the Pharisees brought in a woman caught in adultery. They made her stand before the group and said to Jesus, “Teacher, this woman was caught in the act of adultery. In the Law Moses commanded us to stone such woman. Now what do you say?’ They were using this question as a trap in order to have a basis for accusing him.
But Jesus bent down and started to write on the ground with his finger. When they kept on questioning him, he straightened up and said to them, ‘If any one of you is without sin, let him be the first to throw a stone at her.’ Again he stooped down and wrote on the ground.
At this, those who heard began to go away one at a time, the older ones first, until only Jesus was left with the woman still standing there. Jesus straightened up and asked her, ‘Woman, where are they? Has no one condemned you?’
‘No one, sir,’ she said.
‘Then neither do I condemn you,’ Jesus declared. ‘Go now and leave your life of sin.’”

On Valentine’s Day of 1998 I was at a conference with Student Christian Fellowship from the University of Evansville. At the conference, they held a special wedding service. All who wanted to “marry” Jesus, came forward. I went forward. I said my vows. And in my mind’s eye, where God flares my imagination and controls my vision, I saw His face. I saw his eyes. And do you know what I saw in them? Unconditional acceptance suspended in the most powerful force of love I’ve ever encountered. He did not hold back the rush of affection He held for me. He let me feel it, bathe in it, be renewed by it. It was a life-changing moment for me, that wedding day in 1998. The uninhibited power of Jesus’ love has brought me back from the brink of depression several times, has stilled the onslaught of fear and steadied my mind, and has been a beacon of guidance when there was nothing else to guide me. And even when my love for Him is stilted, imperfect, and even broken, His does not waver. He is not shaken. His love doesn’t come in candy boxes lined with red tissue paper. It comes in the form of a gruesome, tortured death meant for a criminal and the subsequent shredding of the universal laws as we know them when He came back from the dead to take his life back up and stake his claim on us. He did it out of love and He did it for you. Don’t settle for watered-down imitations that give you a taste and leave you wanting. There’s more. He is more. Because he is Love.