Ling longed to have a complete Bible of her own so she could study it and help other believers understand it. So when she heard that a woman only four miles away had Bibles available, she couldn't get there fast enough. It turned out a woman had a few Bibles that had washed ashore after members of a Christian mission group had been forced to throw them overboard while attempting to smuggle them into China at night. Some believers along the shoreline had recovered the Bibles, and this woman had carefully dried the pages one by one in the sunlight.
When Ling asked her for one of the Bibles, explaining how God had called her to preach the gospel, the woman became alarmed. "No, no, no!" she answered. "These Bibles are very valuable. Do you know how hard it is to get a Bible? And how do I know you are even a believer?"
Ling persisted in her pleadings, but was unsuccessful. The woman would not part with a single one of her Bibles. Poor Ling looked so crestfallen the woman told her that if she could recite the Lord's Prayer without a single mistake, she would reconsider.
Ling left, encouraged that there still might be hope. She traveled back to a village where she knew there was a Bible in the home of an elderly believer. The brother cherished the Bible with a holy reverence, and when Ling saw it, she understood why. The old man's Bible was completely handwritten. In fact, the brother's hands were now permanently twisted from the thousands and thousands of hours he had spent carefully copying each verse character by character.
Hearts of Fire: Eight Women in the Underground Church and Their Stories of Costly Faith, page 204-205
Today Johnie and I send our six hundredth Bible overseas. I have so many emotions.
A little more than ten years ago, just a few months after we were married, we bought our first home and moved in. I felt completely overwhelmed by home ownership. I worried that a small leak would require a complete roof reconstruction that would surely bankrupt us. We argued about whether or not to install lawn sprinklers. They're very common in Kansas, but I grew up in Kentucky (where the rain takes care of the ground) and am pretty cheap to boot. I could not fathom spending time and money to pour perfectly good water out on the grass, even if it was brown. What a waste.
I was homesick. I was struggling to love this big dull city I had landed in the middle of. I felt vulnerable without mountains and lifelong friends and family around me.
I didn't know what to do with my time. Should I work? Should I volunteer? Should I have a baby? (No. But was I wrong to feel that way?)
It was during this time that my eyes were opened to modern-day Christian persecution. I didn't realize our brothers and sisters were being tortured and martyred in other parts of the world. I heard some of their testimonies. I read Tortured for Christ by Richard Wurmbrand. And I bought a book that would forever change my life: Hearts of Fire: Eight Women in the Underground Church and Their Stories of Costly Faith.
These were eight unimaginable stories of women living and breathing on the same earth I was living and breathing on. They were ripped from their families. Tortured. Faced with unthinkable circumstances and still praised the Lord.
The roof. The sprinklers. The skyscrapers and one way streets. The distance between me and my family. They all faded away. I saw how insignificant all of those things actually were and just how significant faith and service to God are.
I was convicted anew of a love for the Holy Word when I read the story of Ling, a woman in China who became a Christian as a young girl and would walk from village and village to read and copy and memorize snippets of the Bible. She worked toward getting her own copy of the full Bible for many years before she finally secured it. And then she dedicated her life to sharing it with others. She eventually began smuggling Bibles to churches in China and faced several prison sentences and was tortured for those efforts. Still she persevered and never gave up on her mission. Each time she was released from prison, she continued to share the Word.
I read this story from the comfort of my climate controlled living room couch. With multiple copies of the Bible on my bookshelf. Days and weeks would sometimes pass without me even opening one. And while I relaxed in apathy, she risked her life and well being for that same book.
I read her story in 2007. It ended:
Ling now has a vision for the International Olympics, which is coming to Beijing in 2008. She believes this will be an incredible opportunity for the house churches to grow and flourish. Back to work...
I am one of the least evangelic Christians around. After I outgrew a horribly embarrassing vocal and ugly (and wrong) condemnation of others phase in my teenage years, I don't really feel compelled to share scriptures or verses or sermons. I usually live out my Christianity in other ways, and thank God for those who are called to evangelism. (I think its part of the beauty of a body with each member serving their own function.) But I wanted to help Ling distribute Bibles. If people were literally dying for a copy of this precious book, the least I could do was help them.
The same organization that published the Hearts of Fire book had a program called Bibles Unbound. For $30 a month, they ship five Bibles to people in the underground church who request them. The Bibles are translated into their native language and packaged in such a way to look like a non-religious book.
At the time Johnie and I didn't really have any disposable income to speak of. We would have to cut something out to take part in this program. Giving up a meal out each month seemed like a small sacrifice in the face of a sister who was giving up her freedom. So we signed up.
I was given the names of the Bible recipients each month, and in those first few months I actually packaged the Bibles up myself to mail out. I would hang the names on my refrigerator and pray over those people.
Month after month ticked by. Johnie got a promotion and I got a full-time job and we no longer even felt that monthly donation for the Bibles. Eventually, I opted for the organization to send the Bibles on my behalf in an effort to help expedite the process and cut down on overall shipping costs.
I signed up for the "where most needed" option and was given a ministry page. It felt uncomfortable. The header: "Mission Page of Mrs. Amy Rose Karr." I'm not 90. (I was uncomfortable with "Mrs." and "Karr" at that point in my life but I've grown into them over the years.) And how was a small monthly donation a "mission?" It felt too grandiose for my little contribution.
But over the years, my "mission page" has grown. Bibles I sponsored have been sent to North Korea, Indonesia, Vietnam, Hmong, China, Nepal, Sri Lanka, India, Pakistan, Iran, Egypt, Ethiopia, Nigeria, Columbia, Cuba and Chiapas, Mexico. And now there are nearly 600 names to scroll through (a few dozen Bibles were given covertly, so I only know the name of the field worker who distributed them).
When Johnie and I sponsored those first five Bibles, we weren't sure if we'd sponsor any more. There have been times when we haven't missed the money as it left our account. And other times when we have scrounged up the funds for that month's donation knowing we might not have one the following month.
But, by the grace of God, the story of a young girl in China reached a young, self-absorbed girl in Kansas. And even though she didn't really appreciate or share the Bible as she should, she was motivated to take a small step to send out a few Bibles to unknown Christians overseas. How beautiful is the work of the Lord.
I share this because I grapple, like many, with things like my purpose and my calling and God's will for my life day-to-day. Should we buy this house or this car or this bar of chocolate? Do I really need a smartphone or a TV? How many toys should a two year old have? Should I lay in bed and pray or push through and get out and get some work done? Or just watch TV? Is this vacation too much? How do I honor the Sabbath? To what, specifically, should I give my time and my money and my attention? How in the world do I make things different? When should I speak up? When should I step back? What, for the love of God, should I even do?
I've made a lot of mistakes and I've gotten a lot of things wrong.
Once when I was listening to a radio story a few years ago about a child just coincidentally meeting their sponsor after they grew up, I began dreaming of how beautiful that would be in my own life. I was driving around Kansas back in those days training nurses on a parent education program to reduce stress (and abuse) related to early infant crying. Those early mornings and late nights on the road I often asked God, "What have I prevented? Will I ever know if any lives were actually saved or bettered from all of this?"
And as I began to imagine one day, possibly from Heaven, getting to see the actual reach of my God-blessed efforts, I realized that it would pale in comparison to all of the people I have passed by and not helped. If the Lord ever showed me the extent of the damage I have caused or allowed to occur because of my actions and inactions, I don't think I could bear it.
It was a crushing thought to me then, but I feel like I have gained a better perspective over the years. The Lord can fix my ignorance and my disobedience. His grace covers me. And it covers my shortcomings.
For a long time I focused on all the things I didn't do well enough. There's plenty there to keep a mind busy. But I have decided instead to focus on the things I am getting right. Though $30 is a meager offering from a comfortable middle class American, the Lord can bless it and multiply it over and over and over again. And if you keep offering up your "little" service, eventually five Bibles become 600 spread all over the world.
This is a time of year when we consider generosity and resolutions and changes in our lives and our habits. It is also a time when we get bogged down in grief from the past or anxiety for the future or dissatisfaction for the day. Turn instead to the little pieces of good you can do. Plant the seeds. The Lord will provide the growth. It may be awhile, or even a very long while, before you see any fruit, but it is there. Give your offering, whatever it is. The Lord will make it more than enough.
Showing posts with label vulnerability. Show all posts
Showing posts with label vulnerability. Show all posts
Friday, December 1, 2017
Sunday, December 20, 2015
The Birth Story
Can't you feel it ever closer?We breathe it in and then we exhale.
We touch both sides and now eternal
standing closer to the veil.
-All Saints' Day, by Carrie Newcomer
I've been anxious to write the birth story. Actually, I've written and rewritten it over and over again in my head and on paper these last seven weeks. In truth, I feel like I have multiple birth stories and wasn't sure which one I wanted to tell.
My water broke while I was simmering a big pot of soup and baking pumpkin rolls one Saturday afternoon when Matthias was just shy of 37 weeks gestation. Right at thirteen hours later I was holding him in my arms. I only felt contractions about six of those hours. No epidural. The world watched its first triple crown winner since Secretariat race as I lay in bed that evening waiting for real labor to start. There was an influx of laboring women and my midwife joked she was having her own Breeder's Cup that night. She said I was her American Pharaoh.
Matthias was healthy and a couple weeks later I had made a near complete recovery.
Sounds lovely (and obnoxious), doesn't it?
Told another way, I went into pre-term labor one weekend after a long, hard pregnancy that had me pretty sick and mostly in bed for 18 out of 37 weeks. I chose to take Cytotec after having no progress and no real contractions for several hours after my water broke. I can't really find words to describe the pain. I would have had an epidural if there had been more time. I required stitches and Matthias suffered a broken collar bone. While I delivered him quickly, the final stage of labor (after the baby) sort of stalled. I then received a dose of Pitocin. I continued to bleed and no one was sure why or where specifically it was coming from. My midwife had to be careful in choosing medications to help stop the bleeding because I was also at risk for blood clotting due to other complications of the pregnancy. I passed out five times in the next twelve hours. I eventually received a blood transfusion. The IV line quickly failed and leaked blood into my ever swelling arm for a little more than an hour before anyone actually thought to check it as I complained of throbbing from what I understood should have been a relatively painless process. I had three back-to-back migraines. In some ways I feel cheated of my son's first week of life.
That's really more drama than I care for.
The birth story I really want to tell (while being honest about the good, the bad and the ugly) is one of God's grace.
I was not interested in having biological children. I was actively and diligently trying to prevent them.
I felt what I would learn eight days later was my very first pregnancy pain and symptom while I was singing Turn my heart, O Lord. These waters were slow to turn. Because when I did see those two little lines I immediately began praying for it not to be so.
Even when I realized the Lord was asking me to be pregnant. Even after I had prayed for years for Him to make clear to me what He wanted me to do -- and expressed my willingness to do anything. This was an assignment I didn't want to take.
Though my heart and my attitude were ungrateful and rotten, He was sweet to me throughout. It isn't hard for me to believe that every baby ever born is appointed by God, but I felt especially aware that Matthias was so.
I received a card from a local ministry with a very specific prayer and scripture they were praying for me that spoke directly to some of my fears and anxiety. Before they even knew I was pregnant.
Once, about midway through the pregnancy, I was feeling especially burdened. I began to worry I would always think of Matthias as a burden. And I began to feel sorry for him. I worried he would always feel like a burden to me, and I didn't want him to carry that load. I wanted him to be confident that he brought joy to my life. And I prayed that one day -- even if it would take years -- I could tell him with complete honesty how joy-filled his life was to me.
While I was praying, my husband was out having lunch with a friend. Randomly and off the topic of their conversation, this friend felt moved to tell my husband he knew that Matthias would bring us so much joy in the years to come. It seemed odd to Johnie, but he came home and told me about it. It didn't seem odd to me.
Due to lupus and antiphospholipid antibodies, Matthias and I were at risk for a whole laundry list of complications and significant health issues. Miraculously, we escaped them all (save for what was technically a pre-term delivery). That didn't stop me from worrying and praying about them. As I poured out my heart to a trusted spiritual director in the early weeks of my pregnancy, she beautifully prayed for grace to surround my womb. It became a prayer I continued to offer.
How poignant, then, that some of the first words out of my midwife's mouth when she saw me in labor were, "You're going to have a baby tomorrow. I love Sunday babies. Sunday's child is full of grace."
Beyond that, I had prayed and prayed for an early November birth. My due date was smack dab in the middle of the eight day span between the anniversaries of my grandparents' deaths. I didn't want to have a baby during that time and wasn't sure I could bear my child being born on the same date I lost my precious grandmother. The Lord answered those prayers beautifully.
Just for fun and to show just how well He knows me and loves me, the Lord more specifically timed Matthias' birth at precisely one minute prior to the end of Daylight Savings Time. My good friends know the day we get our hour back from the government is my all-time favorite day of the year. The first hour I spent with Matthias was that redeemed hour. Plus, we think it's pretty cool that his medical record says he was born at 1:59 a.m. but received his first shots, his first diaper and began nursing in the minutes leading up to that.
In the weeks following, as I prayed about a positive screen for a possible genetic defect, I would realize his birthday is also All Saints' Day.
I felt like God was telling me during those weeks of not knowing about my son's health that Matthias belonged to Him and I could trust Him. I know well that God doesn't protect us from all infirmities, but was relieved to learn the Lord spared him and the positive screen was the result of a (relatively minor) deficiency in my own body.
While I initially had some complications after his birth, a couple weeks later I recovered almost completely. Seemingly overnight. I and many others had prayed for my health throughout the pregnancy and the days following the delivery. It was like a miracle. I feel like the Lord healed me. My midwife admitted at my follow-up appointment that there was no medical explanation for me to be doing as well as I was so quickly.
I trusted that the Lord would answer my prayer for joy in time, but I was surprised with how quickly it came. Newborn babies are my absolute favorite people. But I was quite ill on Matthias' first day. I was passing out and struggling through a migraine. Our sweet friends were visiting throughout the day (I welcomed them), but each time Matthias would be wheeled into our room to meet people I would tense up at having to manage this squirmy little stranger.
Johnie was instantly enamored. I wasn't. When he asked me if I thought Matthias was cute I said, "I don't know." (That was also the moment -- I kid you not -- Matthias chose to give me the stink eye for the very first time. I still wasn't sure how I felt about his looks, but that at least made me chuckle.)
It was in the early minutes of November 2nd when I fell in love. A nurse brought him into the room so I could feed him. But he was sleeping so soundly and I didn't feel like wrestling to get him to nurse. So I just laid his little body against mine and felt the rise and fall of his breaths. I rubbed my hand up and down the little back I had felt inside me just days before. I looked up at the clock and realized Matthias had one more hour left of his very first day of life. And he and I spent it alone in the dark and quiet. I wept and thanked God for the miracle of his life. And the joy I have felt has only increased from there.
I have always defended motherhood as a high calling. But I didn't think it was for me (and still know it isn't for everyone). I didn't realize how much fulfillment one can find in changing diapers and cleaning spit up. The joy in fighting through bleary-eyed exhaustion to hold a sleeping baby and drink in that precious peaceful face for just a few more minutes. Sure, it has its hard moments. I have times of anxiety and frustration and sadness and every other emotion conceivable. But some cliches have merit. The rewards truly are immeasurable for me.
Boy, how those rivers turned. And they flow with joy and contentment I have never felt before.
Yet still, as warm and fuzzy as that sounds, my very first words to my newborn son will forever and forever be: Oh baby... You almost killed your mama. And if I had to sum the whole thing up in one sentence, that'd probably be it. I would only add but for the grace of God.
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Thursday, October 16, 2014
A year with the lupus.
A chronic illness diagnosis is not a death sentence. It is a junction in your journey through life that takes you on a different direction than you desire or anticipated. There's no doubt that your chronic illness has wounded you. But a wounded warrior gets up, in spite of the wounds, and moves forward again, and again, and again.
-Richard Cheu, Living well with chronic illness: A practical and spiritual guideIt was one year ago when I was told I have lupus. It hasn't been the easiest. In fact, I am just starting to accept that I might actually have lupus, like lifelong lupus. Some days. Some days, I still can't help but think this is just a phase I'm going through. That I'll look back on this as those years I was really sick and we thought it was lupus. I have trouble imagining that I may feel this way for decades.
There are days when I feel so defeated. When I think my sickness stole my future. When I think of all I've given up, all that has been taken away. When I feel so crummy and don't even have anything to show for it.
But then there are days like October 4th. When I have the strength and the freedom to say yes to hiking with friends. And when those friends actually mean rock climbing when they say hiking.

See that mountain. I climbed it. Without any special equipment.
That's not as stupid as it sounds. Well, maybe it is. (But we didn't start at the bottom... If that makes it better.)
I've been on a hike coordinated by this friend before. It didn't involve clinging for my life to a rock several hundred feet above the actual ground. It's just that on this occasion I didn't figure out he expected us to scale a rockface until I was already on my way up. (Sometimes I'm slow and naive, you know.)
We stopped for lunch on the first (and easiest) ledge and my brain started putting some little details together: (1) The hike we were on was a loop. We weren't going to backtrack. (2) I saw no way off the ledge but to backtrack.
Already, I had been informed the hardest part of the hike was over. So I asked, "Jeff, you said we make a loop, so where do we go from here?"
"Up."
I looked up but didn't see the top and wasn't going to lean out to try. There were a few more ledges between the top and where I was, and each time I was told: (1) This one is the hardest in whatever way. (2) It is easier to go up than down.
We passed people along the way who had reached their own summit. And our group ended up splitting into two. Some chose the harder way back down.
I stood on the last ledge before the top and didn't know if I could make it. But I didn't know when I'd get another chance to try. Foothold, then handhold. One after the other. Inch by inch I ascended. Or more specifically, crawled. And prayed. And at one point screamed for help. (That really got a response!)
And I made it to the top and I felt so accomplished. I felt even more accomplished when I looked back later in the hike to see what I had actually climbed. I never would have believed I was capable of that. If I would have known how big that mountain was before I started, I never would have even tried.
As I told my husband on the way home that night, I have felt defeated so many times this year that victories like that become even more meaningful.
And there was so much about climbing that mountain that metaphorically mirrors my own journey with sickness. I never would have thought I could handle it. I never would have thought I could be sick and mostly joyful. Grateful. Hopeful. By the grace of God, I have.
Within hours I started feeling the effects of the day's conquest. Ibuprofen, extra herbs, a soak in epsom salts and essential oils, a heating pad and at the beginning of those three days with painfully sore muscles I could only feel angry and frustrated.
I'm too young to feel this bad.
The old Amy could have recovered from that in less than a day. Ironically, the old Amy is a few years younger than the new Amy and is in much better health. I compare myself to her sometimes.
But the old Amy lived life with more fear. The old Amy took fewer chances. I knew the old Amy pretty well and I'm putting my money (well, you know, if I was actually earning money these days) on she wouldn't have even tried.
And long before the pain eased, the anger melted.
I am weaker now. But in ways I am getting stronger.
And how many people in the world never even get the chance to try something like that for fun? And how many people couldn't even do it at all even if they did try?
I am blessed. With health and strength and much larger margins to rest than most people. (And so much more.)
A few days after the climb I was reading a list I made shortly after my diagnosis of important things I wanted to hang on to. On it: Continue to hike the mountains of my home.
And so far -- thankfully -- I still am able to do that and almost everything else on the list.
I don't know what the next years hold for me, but I am so grateful for the blessings of this one. And I know whatever I may face ahead, I will make it triumphantly (praise the Lord!) to the top in the end.
There's a peace I've come to know
though my heart and flesh may fail.
There's an anchor for my soul.
I can say, "It is well."
-Chris Tomlin, I will rise
Friday, March 21, 2014
An open letter to my critics
Dear Critic,
All of my life you have kept me in chains. Even before I knew what to call you, you kept me silent. On the sidelines.
I listened to you. I believed you.
I labeled you truth and anything else a lie. I don't understand why. But I did. And still sometimes do.
You said I was not good enough. Never would be. You said there was no use in trying. That failure was guaranteed. I agreed.
You said I was stupid. I was awkward and boring. I was ugly and fat and unfixable. Sub-par.
You said my ideas were dumb. My dreams were invalid. My words were best unwritten.
I thought you were right. And so I didn't write them. When I did pick up the pen, it was with a shaky, unsure hand.
You have judged me harshly without even knowing me. You claim to understand, but you have no idea. You don't care about me, truly, even when you say you do. You're much more insecure than I am and you won't even admit it. You think the only way to build yourself up is to tear me down. And that's sad. I'm not going to play along.
I have tried to make you happy. Sacrificing my own joy in trying. With no reward. (Why am I surprised?) It must be impossible to please you.
I am learning that you cannot be trusted. And I am timid and I am still scared of you, but I do not value your opinion of me like I used to.
I have let you hold me back, but now I am breaking free. You will not defeat me. If I fail, it will not be because of you or your accusations or your predictions. And when I am wrong, that still does not mean that you are right.
Even if I sometimes stumble, even if my words fall flat, even if a dream is unrealized, you still are mistaken about me.
Despite what you say, there is not fault in boldness, in authenticity, in courage, in kindness -- even hard kindness, in persistence and perseverance and patience.
Others know better than you about me. You do not, but others accept me for who I am. I am loved. And I am turning my ear to the voice of love. That is truth. I am clinging now to love and truth and justice and security and validity.
And as we part, I hope you seek a better way.
Best,
Amy
I do the very best I know how - the very best I can; and I mean to keep doing so until the end. If the end brings me out all right, what is said against me won't amount to anything. If the end brings me out wrong, ten angels swearing I was right would make no difference.
-Abraham Lincoln
All of my life you have kept me in chains. Even before I knew what to call you, you kept me silent. On the sidelines.
I listened to you. I believed you.
I labeled you truth and anything else a lie. I don't understand why. But I did. And still sometimes do.
You said I was not good enough. Never would be. You said there was no use in trying. That failure was guaranteed. I agreed.
You said I was stupid. I was awkward and boring. I was ugly and fat and unfixable. Sub-par.
You said my ideas were dumb. My dreams were invalid. My words were best unwritten.
I thought you were right. And so I didn't write them. When I did pick up the pen, it was with a shaky, unsure hand.
You have judged me harshly without even knowing me. You claim to understand, but you have no idea. You don't care about me, truly, even when you say you do. You're much more insecure than I am and you won't even admit it. You think the only way to build yourself up is to tear me down. And that's sad. I'm not going to play along.
I have tried to make you happy. Sacrificing my own joy in trying. With no reward. (Why am I surprised?) It must be impossible to please you.
I am learning that you cannot be trusted. And I am timid and I am still scared of you, but I do not value your opinion of me like I used to.
I have let you hold me back, but now I am breaking free. You will not defeat me. If I fail, it will not be because of you or your accusations or your predictions. And when I am wrong, that still does not mean that you are right.
Even if I sometimes stumble, even if my words fall flat, even if a dream is unrealized, you still are mistaken about me.
Despite what you say, there is not fault in boldness, in authenticity, in courage, in kindness -- even hard kindness, in persistence and perseverance and patience.
Others know better than you about me. You do not, but others accept me for who I am. I am loved. And I am turning my ear to the voice of love. That is truth. I am clinging now to love and truth and justice and security and validity.
And as we part, I hope you seek a better way.
Best,
Amy
I do the very best I know how - the very best I can; and I mean to keep doing so until the end. If the end brings me out all right, what is said against me won't amount to anything. If the end brings me out wrong, ten angels swearing I was right would make no difference.
-Abraham Lincoln
Wednesday, March 5, 2014
Criticism reframe
Asking a working writer what he thinks about critics is like asking a lamppost what it feels about dogs.
-John Osborne
I may be the last person in America to know about Divergent. I mean, I've seen random posts from friends about the book series and Veronica Roth. But I didn't really know what they were about and didn't take the time to investigate. I've been a bit pre-occupied these last few months.
I was watching live television Tuesday night and couldn't fast-forward through a movie preview about a girl trying to break free from a society of factions. I was intrigued. The movie: Divergent. The pieces came together. That's what people have been talking about.
I decided to check out the book series on Amazon. I wasn't sure if I would like it or not. Though not a hard and fast rule, I usually don't L-O-V-E love other-worldly-ish science-fiction-y books (which this looked to be).
I decided to scroll through some reader reviews and came across this one:
...The real reason I give this book one star is because the book, as a whole, was awful. I'm sorry, but this is one of the most shoddily written books I've ever read in my entire life. And I say this as someone who absolutely adored the first two books in this series. I say this as someone who read Fifty Shades of Grey ... and Allegiant has officially taken that book's place as the worst book I've ever read. And I debated somewhat on that, but I decided that Allegiant wins because, while Fifty Shades was an affront to literature indeed, I don't actually wish I could go back in time and unread it. I wish to the heavens that I had never read Allegiant. ...
I don't know much about these books, their writer or this reader. But words like that paralyze me.
They make me think: If a best-selling, publisher-contracted author whose words have been catapulted to the big screen gets reviews like that, then what would people say about the words I write if they read them?
We've been talking about obstacles in the (in)courage writers' group I'm blessed to be a part of and one of my biggest is fear of criticism. Before I click publish, I begin to imagine how my words might be criticized. I have more than two dozen un-published drafts in my blog queue. Many of them stalled out of fear at how they might be received. For style or for content.
This fear is why I stay silent more than I speak up. Imagine my struggle when I learned that silence is also criticized! What can a girl do to banish the critics?!?!
Well, while I do wish we lived in a world where people are nicer to one another. And I do think we have become an overly-critical people. (Wait... I'm being critical... This is so hard.) The truth is, there will always be critics. Criticism is inevitable. Even Jesus -- especially Jesus -- was criticized.
And sometimes criticism can be a good thing. What if Dr. Martin Luther King, Jr. had not been critical?
Maybe the best way is not to avoid criticism, but to work through it. To work despite it. To be grounded in my value and my worth (as Alia Boston Hagenbach reminded our writers' group) and my own personal truth and to share those with the world in love.
Maybe the best way is not to avoid criticizing, but to do so with respect and thoughtfulness. To work to build up and improve, not tear down and destroy.
To remember that the best way to move forward together is to keep a dialogue open to every voice, every side, every ideology.
And to remember when words boomerang back harshly at me that even best-selling, publisher-contracted authors whose words are played out on-screen have their critics.
Just like a harsh judgment doesn't make her any less than, it doesn't make me less than either.
-John Osborne
I may be the last person in America to know about Divergent. I mean, I've seen random posts from friends about the book series and Veronica Roth. But I didn't really know what they were about and didn't take the time to investigate. I've been a bit pre-occupied these last few months.
I was watching live television Tuesday night and couldn't fast-forward through a movie preview about a girl trying to break free from a society of factions. I was intrigued. The movie: Divergent. The pieces came together. That's what people have been talking about.
I decided to check out the book series on Amazon. I wasn't sure if I would like it or not. Though not a hard and fast rule, I usually don't L-O-V-E love other-worldly-ish science-fiction-y books (which this looked to be).
I decided to scroll through some reader reviews and came across this one:
...The real reason I give this book one star is because the book, as a whole, was awful. I'm sorry, but this is one of the most shoddily written books I've ever read in my entire life. And I say this as someone who absolutely adored the first two books in this series. I say this as someone who read Fifty Shades of Grey ... and Allegiant has officially taken that book's place as the worst book I've ever read. And I debated somewhat on that, but I decided that Allegiant wins because, while Fifty Shades was an affront to literature indeed, I don't actually wish I could go back in time and unread it. I wish to the heavens that I had never read Allegiant. ...
I don't know much about these books, their writer or this reader. But words like that paralyze me.
They make me think: If a best-selling, publisher-contracted author whose words have been catapulted to the big screen gets reviews like that, then what would people say about the words I write if they read them?
We've been talking about obstacles in the (in)courage writers' group I'm blessed to be a part of and one of my biggest is fear of criticism. Before I click publish, I begin to imagine how my words might be criticized. I have more than two dozen un-published drafts in my blog queue. Many of them stalled out of fear at how they might be received. For style or for content.
This fear is why I stay silent more than I speak up. Imagine my struggle when I learned that silence is also criticized! What can a girl do to banish the critics?!?!
Well, while I do wish we lived in a world where people are nicer to one another. And I do think we have become an overly-critical people. (Wait... I'm being critical... This is so hard.) The truth is, there will always be critics. Criticism is inevitable. Even Jesus -- especially Jesus -- was criticized.
And sometimes criticism can be a good thing. What if Dr. Martin Luther King, Jr. had not been critical?
Maybe the best way is not to avoid criticism, but to work through it. To work despite it. To be grounded in my value and my worth (as Alia Boston Hagenbach reminded our writers' group) and my own personal truth and to share those with the world in love.
Maybe the best way is not to avoid criticizing, but to do so with respect and thoughtfulness. To work to build up and improve, not tear down and destroy.
To remember that the best way to move forward together is to keep a dialogue open to every voice, every side, every ideology.
And to remember when words boomerang back harshly at me that even best-selling, publisher-contracted authors whose words are played out on-screen have their critics.
Just like a harsh judgment doesn't make her any less than, it doesn't make me less than either.
Monday, February 17, 2014
On feeling accepted
So... what was your high school superlative?
-Grad school friend
We were sitting around a table at a restaurant just off campus. Somehow the conversation turned to high school superlatives. One friend had been voted Most Likely to Succeed, another Most Popular. I laughed at jokes and stayed quiet until they asked me and I couldn't think of anything but the truth. The gig was up. They would know I'm a loser.
I wasn't voted anything.
Shocked faces. And one friend said, "Not even class clown?" I appreciated the sentiment, but no.
I never really had very many friends in school. I never had to use more than three fingers to count them all, actually. Everyone else was either mostly indifferent toward me or showed an open disdain. They made fun of my glasses and made fun of my asthma and made fun of my clothes and made fun of my grades. To the point that I didn't want to go to school anymore. To the point that sometimes I didn't even want to live anymore. To the point that I appreciated the people who just ignored me and I tried to stay ignored by as many people as I could as much as possible. Things like high school superlatives were just another reminder that I was not in.
I thought the problem was me. That I was unlikeable. A loser. It was a truth I accepted. Until my sophomore year of college, when I made it to a departmental assembly early, signed in and retreated to a corner. And a popular and beautiful classmate came over and began chatting. Genuinely chatting. My eyes darted around the room and I figured maybe I was better than no one to talk to. But as the room filled up, and her friends filled out a circle that included me, she -- and the others -- were still acting friendly toward me. Genuinely engaging me in conversation. Genuinely including me. And that was the beginning. It was in the Department of Communication at Eastern Kentucky University that I felt accepted by my peers for the first time in my life.
I never let them in on the secret that I was an imposter -- that an uncool kid had infiltrated their fraternity and sorority and athletic ranks.
In grad school, I was afraid my loser status would be more obvious. But for all their smarts, my classmates never picked up on it. Until that fateful day when I had to confess: My school days had been completely different than theirs. But they liked me anyway. It was like a whole new world -- people knowing I'm not cool -- never had been even close -- and being friends with me anyway!
Out of school, I approached each new group of people with that same timidity I had as a child. Expecting rejection, being surprised by acceptance. Work friends, church friends. I even scored an extremely hot husband, against all odds.
I didn't realize until well into my adulthood that I wasn't a loser. I was just bullied by a few misguided classmates. The problem wasn't me, it was them. And while I still carry around some scars from those days, I'm getting more and more comfortable -- less shocked and surprised -- by the blessing of acceptance among friends.
Since moving back to Kentucky God has bonded me with a precious and beautiful group of women who have transcended friendship into sisterhood. Last summer half of us were pregnant and those without a baby bump got an aunt-to-be shirt as a consolation prize. Well, everyone but me. Mine said, "I'm the cool aunt." And it wasn't even a cruel joke. If the eight-year-old Amy who sat crying at her birthday party because no one showed up could have only known this would happen. That she'd have more friends and relationships than she felt like she could maintain. That those friends would bestow on her such a coveted adjective. That she really wasn't a loser after all. I think it would have made those hard years easier.
And so, to all the other girls out there who sit alone and cry alone -- who don't have the right clothes or the right looks or the right social status. To the girls (and boys) who have been made to believe you are not good enough: I can tell you that they're wrong about you. You actually are the cool kid yourself. And someday you'll feel loved and you'll feel accepted and you'll even have the t-shirt to prove it.
-Grad school friend
We were sitting around a table at a restaurant just off campus. Somehow the conversation turned to high school superlatives. One friend had been voted Most Likely to Succeed, another Most Popular. I laughed at jokes and stayed quiet until they asked me and I couldn't think of anything but the truth. The gig was up. They would know I'm a loser.
I wasn't voted anything.
Shocked faces. And one friend said, "Not even class clown?" I appreciated the sentiment, but no.
I never really had very many friends in school. I never had to use more than three fingers to count them all, actually. Everyone else was either mostly indifferent toward me or showed an open disdain. They made fun of my glasses and made fun of my asthma and made fun of my clothes and made fun of my grades. To the point that I didn't want to go to school anymore. To the point that sometimes I didn't even want to live anymore. To the point that I appreciated the people who just ignored me and I tried to stay ignored by as many people as I could as much as possible. Things like high school superlatives were just another reminder that I was not in.
I thought the problem was me. That I was unlikeable. A loser. It was a truth I accepted. Until my sophomore year of college, when I made it to a departmental assembly early, signed in and retreated to a corner. And a popular and beautiful classmate came over and began chatting. Genuinely chatting. My eyes darted around the room and I figured maybe I was better than no one to talk to. But as the room filled up, and her friends filled out a circle that included me, she -- and the others -- were still acting friendly toward me. Genuinely engaging me in conversation. Genuinely including me. And that was the beginning. It was in the Department of Communication at Eastern Kentucky University that I felt accepted by my peers for the first time in my life.
I never let them in on the secret that I was an imposter -- that an uncool kid had infiltrated their fraternity and sorority and athletic ranks.
In grad school, I was afraid my loser status would be more obvious. But for all their smarts, my classmates never picked up on it. Until that fateful day when I had to confess: My school days had been completely different than theirs. But they liked me anyway. It was like a whole new world -- people knowing I'm not cool -- never had been even close -- and being friends with me anyway!
Out of school, I approached each new group of people with that same timidity I had as a child. Expecting rejection, being surprised by acceptance. Work friends, church friends. I even scored an extremely hot husband, against all odds.
I didn't realize until well into my adulthood that I wasn't a loser. I was just bullied by a few misguided classmates. The problem wasn't me, it was them. And while I still carry around some scars from those days, I'm getting more and more comfortable -- less shocked and surprised -- by the blessing of acceptance among friends.
Since moving back to Kentucky God has bonded me with a precious and beautiful group of women who have transcended friendship into sisterhood. Last summer half of us were pregnant and those without a baby bump got an aunt-to-be shirt as a consolation prize. Well, everyone but me. Mine said, "I'm the cool aunt." And it wasn't even a cruel joke. If the eight-year-old Amy who sat crying at her birthday party because no one showed up could have only known this would happen. That she'd have more friends and relationships than she felt like she could maintain. That those friends would bestow on her such a coveted adjective. That she really wasn't a loser after all. I think it would have made those hard years easier.
And so, to all the other girls out there who sit alone and cry alone -- who don't have the right clothes or the right looks or the right social status. To the girls (and boys) who have been made to believe you are not good enough: I can tell you that they're wrong about you. You actually are the cool kid yourself. And someday you'll feel loved and you'll feel accepted and you'll even have the t-shirt to prove it.
Labels:
authenticity,
community,
friends,
hope,
love,
openness,
vulnerability
Saturday, November 30, 2013
Thankfulness Project: Wrap Up
Can you see the holiness in those things you take for granted -- a paved road or a washing machine? If you concentrate on finding what is good in every situation, you will discover that your life will suddenly be filled with gratitude, a feeling that nurtures the soul.
-Rabbi Harold Kushner
In the last ten days, as I've wondered what I would write about being thankful for if I could get any kind of internet connection or signal from my phone, or as I've taken care of my mom as she was sick, or as I've laid in bed sick myself, my mind has been flooded with possibilities.
I am not trying to sugar coat things or put on a brave face. I'm being honest. There was only one day when being thankful didn't come natural or easy. I don't remember which day that was. But as I lay in bed exhausted I thought, "I don't even know what I would write about. I don't even feel thankful." I had to think for several minutes to come up with something. That day feeling thankful was a chore. And what I came up with was those things we are always thankful for. Platitudes. Like God and His promises. That was about all the thankfulness I could muster that day.
I said before that I wouldn't have taken this project on if I would have known everything that would happen this month. Not because it was hard to feel thankful, but because it was hard to find the time and clear-headedness to write about it in the midst of it all.
But in these final ten days of November, I've felt especially thankful and at peace that my grandparents are back together again.
You should know my grandparents raised me. My grandmother cared for me straight from the hospital where I was born until I was 16 and she went into the hospital herself unable to care for me or others any longer. She taught me and raised me up. She gave me advice that I follow still today. She believed in me and pushed me and guided me and corrected me and loved me like no one else.
Losing her is still the hardest thing I have ever been through.
And since the day she died there has been a void in my life. She passed away 13 years ago, on November 27th. I have been able to adjust to minutes and hours and days and weeks and months and years without her. But never Thanksgiving. She left and it became a restless holiday for me.
I loved and cherished my grandfather. I was sad to lose him. I miss him. I started missing him before he even actually breathed his last breath. I started missing him the day he couldn't talk back to me when I called him on the phone. And I thought that losing him would feel like losing my grandmother all over again.
But it didn't. It felt like they were finally back together again. It felt peaceful. It felt like a wrong in the world had been righted. And while I couldn't sit at the feet of these precious grandparents I loved, I knew they were together. As they should be. I knew that when I would see them again, it would be both of them together. As it should be. And more than anything, I was more thankful than I can express for them to finally be with one another again. The world knocked off kilter by her death was balanced out again.
And for the first time since I've been without granny, Thanksgiving didn't feel horrible. I imagined their Thanksgiving reunion in paradise and I was thankful to be able to enjoy the day and enjoy the time. I was thankful to just relax and not feel like everything was all wrong and there was nothing I could do to fix it.
In these last days of November, I've felt thankful for my mom and for my husband. For my brother. For family and for friends. For sweet, sweet memories. For grace and mercy. For the Lord's provision. I've been thankful for rest and relaxation. For comfortable beds and comfortable chairs and comfortable clothes. For medicine. For understanding, sympathetic co-workers. For food and for medicine. For Coca-Cola. For turkey. For words and books and writing. For snow and for rain and for sunshine. For transportation and phones and texts. For access to technology and no access to technology. For air to breathe. For cabins and vacations and seclusion. For hot tubs. For prayer. For a break from responsibility and people who understand that I had to let the ball drop and will come back sometime later to pick it up again. I'm thankful they're holding it for me until I feel ready.
I feel exposed and vulnerable without my grandfather. I feel lost without his advice and guidance. I've never spent more time in my life with anyone than I spent with him. I could write a whole post about everything that frustrated me about him, but I could write even more about how smart and resourceful he was. How he worked for my 29 years fixing all the broken things in my life. I'm thankful for him and all that he was in my life. And I'm thankful to know that he is finally getting to rest now.
I'm thankful for his influence, and my granny's. I'm thankful they gave me the strength to live life without them. And I'm thankful for all the blessings from them and from the Lord. I am thankful. More thankful than words or blogs or actions.
My mom said we should thank the Lord 800 million times. I told her I probably wouldn't be able to do that. She said I should ask for help then because she wasn't sure even that would be enough. So as I feel thankful -- as we feel thankful -- I hope you can join us too. And thanks.
-Rabbi Harold Kushner
In the last ten days, as I've wondered what I would write about being thankful for if I could get any kind of internet connection or signal from my phone, or as I've taken care of my mom as she was sick, or as I've laid in bed sick myself, my mind has been flooded with possibilities.
I am not trying to sugar coat things or put on a brave face. I'm being honest. There was only one day when being thankful didn't come natural or easy. I don't remember which day that was. But as I lay in bed exhausted I thought, "I don't even know what I would write about. I don't even feel thankful." I had to think for several minutes to come up with something. That day feeling thankful was a chore. And what I came up with was those things we are always thankful for. Platitudes. Like God and His promises. That was about all the thankfulness I could muster that day.
I said before that I wouldn't have taken this project on if I would have known everything that would happen this month. Not because it was hard to feel thankful, but because it was hard to find the time and clear-headedness to write about it in the midst of it all.
But in these final ten days of November, I've felt especially thankful and at peace that my grandparents are back together again.
You should know my grandparents raised me. My grandmother cared for me straight from the hospital where I was born until I was 16 and she went into the hospital herself unable to care for me or others any longer. She taught me and raised me up. She gave me advice that I follow still today. She believed in me and pushed me and guided me and corrected me and loved me like no one else.
Losing her is still the hardest thing I have ever been through.
And since the day she died there has been a void in my life. She passed away 13 years ago, on November 27th. I have been able to adjust to minutes and hours and days and weeks and months and years without her. But never Thanksgiving. She left and it became a restless holiday for me.
I loved and cherished my grandfather. I was sad to lose him. I miss him. I started missing him before he even actually breathed his last breath. I started missing him the day he couldn't talk back to me when I called him on the phone. And I thought that losing him would feel like losing my grandmother all over again.
But it didn't. It felt like they were finally back together again. It felt peaceful. It felt like a wrong in the world had been righted. And while I couldn't sit at the feet of these precious grandparents I loved, I knew they were together. As they should be. I knew that when I would see them again, it would be both of them together. As it should be. And more than anything, I was more thankful than I can express for them to finally be with one another again. The world knocked off kilter by her death was balanced out again.
And for the first time since I've been without granny, Thanksgiving didn't feel horrible. I imagined their Thanksgiving reunion in paradise and I was thankful to be able to enjoy the day and enjoy the time. I was thankful to just relax and not feel like everything was all wrong and there was nothing I could do to fix it.
In these last days of November, I've felt thankful for my mom and for my husband. For my brother. For family and for friends. For sweet, sweet memories. For grace and mercy. For the Lord's provision. I've been thankful for rest and relaxation. For comfortable beds and comfortable chairs and comfortable clothes. For medicine. For understanding, sympathetic co-workers. For food and for medicine. For Coca-Cola. For turkey. For words and books and writing. For snow and for rain and for sunshine. For transportation and phones and texts. For access to technology and no access to technology. For air to breathe. For cabins and vacations and seclusion. For hot tubs. For prayer. For a break from responsibility and people who understand that I had to let the ball drop and will come back sometime later to pick it up again. I'm thankful they're holding it for me until I feel ready.
I feel exposed and vulnerable without my grandfather. I feel lost without his advice and guidance. I've never spent more time in my life with anyone than I spent with him. I could write a whole post about everything that frustrated me about him, but I could write even more about how smart and resourceful he was. How he worked for my 29 years fixing all the broken things in my life. I'm thankful for him and all that he was in my life. And I'm thankful to know that he is finally getting to rest now.
I'm thankful for his influence, and my granny's. I'm thankful they gave me the strength to live life without them. And I'm thankful for all the blessings from them and from the Lord. I am thankful. More thankful than words or blogs or actions.
My mom said we should thank the Lord 800 million times. I told her I probably wouldn't be able to do that. She said I should ask for help then because she wasn't sure even that would be enough. So as I feel thankful -- as we feel thankful -- I hope you can join us too. And thanks.
Labels:
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hope,
love,
mercy,
prayer,
simple pleasures,
thankfulness,
vulnerability
Thursday, November 14, 2013
Thankfulness Project: Day 14
A writer is someone for whom writing is more difficult than it is for other people.
-Thomas Mann
Today I am thankful. I am thankful for quiet moments in the morning. To wake up and have energy. For a hug from my husband. For my husband. For our sweet pup who is always so excited to see me. For my car and my job and where I live. For my friends. For my family. For Jesus and salvation and the hope of heaven. For prayer.
I am thankful for Chinese food and blue skies and absolutely brilliant red leaves. I'm thankful for my burnt orange pea coat and my comfortable black pants. I'm thankful for caffeine and for chocolate. I'm thankful for cell phones and computers. I'm thankful for comedies. And for mistletoe.
I even felt thankful for words. I am always thankful for words. And for getting to write them.
Today I felt thankful all day long. Really I did. I just never felt like telling you about it.
These last few months have been a strain for my introverted soul. I've been around more people than normal and under more stress than normal. I've had to share more than normal. More than I'm comfortable with. I'm stretched online and at work and at home and at doctors' appointments and on the phone. It feels like I am stretched -- pushed, pulled, shoved -- everywhere.
And I committed to letting words go every single day.
So I'm pounding out posts I'm not proud of at the end of a day when I'm tired and trying to achieve a month of daily blog posts. I'm starting to think this wasn't the best idea.
I feel thankful but I need more time. I need more thought. My writing needs more work before I let people see it.
I feel exposed.
And when I feel exposed, the doubts start to creep in. This has been when I've ripped up pages of effort. This has been when I've let the phone ring and ring without answering. When I feel like I'm not good enough and worry I'll never be good enough.
I crawled into bed last night and wanted to pull the covers over my head. This is when I contemplate signing off of social media. This is when I think about deleting the blog. This is when I fantasize about being a hermit. This is when I want to disappear.
You aren't exposed when you're invisible. But you're not known either. That's the trade-off.
And I know it isn't worth making. I know this is just the vulnerability hangover. I've written about it before.
I do feel thankful, but today writing about it is hard.
I am thankful this feeling doesn't last forever. And that I only committed to 16 more days of daily blog posts.
-Thomas Mann
Today I am thankful. I am thankful for quiet moments in the morning. To wake up and have energy. For a hug from my husband. For my husband. For our sweet pup who is always so excited to see me. For my car and my job and where I live. For my friends. For my family. For Jesus and salvation and the hope of heaven. For prayer.
I am thankful for Chinese food and blue skies and absolutely brilliant red leaves. I'm thankful for my burnt orange pea coat and my comfortable black pants. I'm thankful for caffeine and for chocolate. I'm thankful for cell phones and computers. I'm thankful for comedies. And for mistletoe.
I even felt thankful for words. I am always thankful for words. And for getting to write them.
Today I felt thankful all day long. Really I did. I just never felt like telling you about it.
These last few months have been a strain for my introverted soul. I've been around more people than normal and under more stress than normal. I've had to share more than normal. More than I'm comfortable with. I'm stretched online and at work and at home and at doctors' appointments and on the phone. It feels like I am stretched -- pushed, pulled, shoved -- everywhere.
And I committed to letting words go every single day.
So I'm pounding out posts I'm not proud of at the end of a day when I'm tired and trying to achieve a month of daily blog posts. I'm starting to think this wasn't the best idea.
I feel thankful but I need more time. I need more thought. My writing needs more work before I let people see it.
I feel exposed.
And when I feel exposed, the doubts start to creep in. This has been when I've ripped up pages of effort. This has been when I've let the phone ring and ring without answering. When I feel like I'm not good enough and worry I'll never be good enough.
I crawled into bed last night and wanted to pull the covers over my head. This is when I contemplate signing off of social media. This is when I think about deleting the blog. This is when I fantasize about being a hermit. This is when I want to disappear.
You aren't exposed when you're invisible. But you're not known either. That's the trade-off.
And I know it isn't worth making. I know this is just the vulnerability hangover. I've written about it before.
I do feel thankful, but today writing about it is hard.
I am thankful this feeling doesn't last forever. And that I only committed to 16 more days of daily blog posts.
Tuesday, November 5, 2013
Thankfulness Project: Day 5
...it's lupus...
-Dr. Lewis
There are moments in life that feel surreal.
I remember the weekend I met Johnie. When our eyes locked and I felt electricity in my veins and something inside me knew this was something special. That my life could be changing forever. More than seven years later I still remember that feeling and still wonder if it actually happened or if I dreamed it. Or at the very least have over-dramatized it.
Unfortunately not all the unbelievable moments in life are that amazing.
It was October 16th. I think it was raining. My grandfather -- who raised me (read: like a father) -- was in the hospital and we weren't sure when or if he'd get out alive. I had already missed too much work and cancelled two doctor's appointments that week. Physically, I felt okay. Given the circumstances. I had felt at least okay for weeks. And I wanted to cancel the third appointment.
But I had been waiting for months. I had already paid out my deductible this year on several other doctors and had a doubly-confirmed set of abnormal lab results. After a year and a half of illness and frustration and confusion over what was going on I wanted this expert's opinion. And I didn't want to wait any longer.
So I took more time from work and left my family to drive an hour and a half on winding Kentucky highways to the only rheumatologist in the world who came recommended by a friend and nurse. (For full disclosure, I didn't realize he was that far away when I took the recommendation. And as I told him, I was hoping my first appointment would also be my last at his office.)
Like a dog on a bone -- unwilling to stop -- I visited doctors and specialists all year who didn't listen or who dismissed what I was saying. Who refused to do the lab work I asked them all for. Who gave me treatments that turned out to be ineffective. Or suggested medicines to mask certain symptoms at the price of exacerbating others. As time wore on, my conviction only grew. I must have some sort of hormonal imbalance. Some type of thyroid issue at worst.
Finally, 14 months and five doctors in, one finally agreed to do part of the lab work I had been asking for. He made sure to tell me that he was fairly certain that all my seemingly random health problems stemmed from depression. And before drawing my blood, he asked me to make a game plan for when the results came back normal. "Because they will," he said. "You just need to figure out what to do to make yourself happy."
I thought I was happy and would be especially so if I felt better physically, but he was sure it was the other way around.
I got a letter the next week saying my lab work was normal and no further testing would be needed.
Except by now I was so fed up with modern western medicine that I began seeking out alternatives. When I got that letter I already had an appointment with an internationally-respected herbalist who I hoped would actually listen to my concerns about a potential imbalance and offer me something other than hormonal birth control.
I requested a copy of the results to take to my appointment and noticed there were some things out of range. My super smart medical scientist friend assured me those out-of-range results were not normal and should be retested.
At my very last visit in the office of the most disrespectful doctor I have ever met, I got an apology about the letter being sent prematurely and more blood drawn. The second round of lab work confirmed the abnormal results were still abnormal.
In the arrogance of his premature diagnosis he at least had the forethought to test for something I hadn't requested. An autoimmune disorder I had never heard of, Sjogren's Syndrome. That test came back fine but was part of a panel of tested antibodies. Three others were abnormally high.
For all I love about my herbalist, he is reluctant to label diseases. He is adamant that he treats people and not diseases. His holistic treatment has made me feel like a normal person again both in and out of his office. But I still wanted an answer clearer than the one he offered.
I recounted this whole 18-month-long story to Dr. Lewis through tears. And was comforted by sarcasm, laughs, sympathy, concern and outrage at all the right junctions.
"Your symptoms and your lab work, they all indicate lupus. I'm sure you were expecting me to say that word," he said.
All of my searching on the internet and in books and conversation linked my lab results with various autoimmune disorders. The anti double-stranded DNA antibody -- more than ten times higher than normal for me -- was linked almost exclusively with lupus in everything I read and heard.
I knew about lupus. I have family members with lupus. I have friends with lupus. I've advocated for lupus research. I've written about lupus. I did not have lupus.
The surest sign of my disbelief found in my now dried up tear ducts. Fully composed, my voice was steady.
"Yes. I know that my lab results are typical for someone who has lupus. And I know that a lot of my symptoms are experienced by people with lupus, but I don't think I have it. I don't have the pain people with lupus have. My joints are okay. I thought you could tell me what is going on."
He gently explained to me "the thing about lupus" and how I still fit the criteria for diagnosis even absent of joint involvement.
"But I was thinking maybe the lab work was just a fluke."
"We've proven it's not a fluke."
I continued to argue. He continued to persist. I realized I wasn't going to convince him I definitely did not have lupus and gave up. I asked questions and he answered them. Then he ordered more lab work and scheduled my next appointment.
"I'm sorry, but this won't be your last time, unfortunately. There's not a one-shot cure for lupus."
"You should really get on that before my next appointment."
Laughter and then seriously, "People are working on it."
With everything finished I walked outside and sat in my car. I had been in there for a while. The work day would be nearly over by the time I made it back and I knew I wouldn't get anything done at the office anyway. I needed to make that call. What would I say?
Wait a minute. Did the doctor say I have lupus? He didn't say he thought I might have it. Or that I could develop it. Or that we needed to run more tests to confirm it.
Suddenly the months of waiting came to a screeching halt. And it felt like I had been given my answer too soon.
The tests were to measure kidney functions... to see how the lupus might be affecting my kidneys. The follow-up appointment was to monitor the activity of the lupus. Were the doctor's exact words 'it's lupus?'
I reached for the door handle. I needed to go back and make sure. But I couldn't think of a graceful way to approach the receptionist and say, "Excuse me. I was just in here ten minutes ago. I thought the doctor said I had lupus, but that can't be right. Can you tell me again what he said?"
I stared at my phone, work number dialed in and couldn't hit send. I didn't know what words would come out of my mouth and I couldn't tell my co-workers this unacceptable diagnosis first. So I called Johnie.
We chatted. He gave me an update on my grandfather and his day. Then, "How was the appointment?"
What should I say? "It was good. I really like the doctor."
"That's good."
I should say it. "He thinks I have lupus."
I heard a word -- or maybe it was just a sound -- catch in his throat. Then sobs. And finally, "That's not what I wanted to hear."
I don't think I've ever felt further away from him nor have I ever wanted to close the gap between us faster.
The drive home was twice as long as I kept trying to figure out how I had dreamed or misheard the news. As I tried to figure out how to break the news to this person and to that one. And in the days that followed, the struggle continued.
For all my training and obsession with communication, I felt entirely incompetent this time. In what order should I tell people? And in what medium? And when? Just the telling felt overwhelming.
I am sure that there are some of you reading this who know me and are dear to me. There are friends and family who I haven't told yet and you may be one of them. I'm sorry. You don't deserve to hear this news in a blog post. I am blessed to know and be close to such an amazing group of people who cross geographic and ethnic and economic and social and religious borders. I don't know how I could find the energy to tell them all (you, if you are reading this) individually.
As I come to terms with this diagnosis and what it may mean for me, I just felt like it was time to go ahead and throw it out there so I can begin the process of moving forward. I hope you understand.
Just as I did in the months before the diagnosis, in the three weeks since I've still been trying to link this or that symptom to this or that cause. Sans lupus.
I'm tired because I'm stressed. It's normal for people to get headaches sometimes. That dizzy spell was just a fluke. Some people just have myriad skin problems that don't respond to medicine. I don't know why I've been nauseous all day. Or all week. I just have bad eyes. This is nothing. That is nothing. No big deal. It'll go away. I just need to get things balanced out.
I'm starting to realize it's all probably the lupus. Putting the pieces together has been bittersweet. That random short swatch of hair I've worked to hide every morning these past few months. Probably lupus. Being unable to walk three miles one day, but up to a ten-mile jaunt on another. Probably lupus. Mouth sores. Probably lupus. Absolutely no weight loss despite weeks of dedicated effort and then sudden, unexplained weight loss. Lupus. Lupus. Lupus. Stupid lupus.
And still -- don't laugh -- I think maybe not.
I got a call on Friday with those latest lab results. Thank God, my kidney functions were normal. The lupus has not affected my kidneys. The nature of the disease requires me to tack on an obligatory "yet" here. But there's no denying this is wonderful news any way you look at it.
The nurse added, "The rest of your labs show minimal lupus activity right now. Unless you have a flare, we'll see you for your follow-up in January."
You mean he thinks I have lupus?
Obviously I haven't fully come to terms with this myself. I don't know when or if I'll ever be comfortable claiming I'm having "a flare."
And I can't help myself. I just can't help but wonder if some day, sooner or later, I'll have to rescind this post and tell everyone I don't actually have lupus after all, by way of misdiagnosis or misinformation or misunderstanding or miracle.
If after all these words you're still confused about what lupus is, I can tell you that I'm (obviously) confused, too. The Lupus Foundation of America has the most reliable information if you'd like to learn more. (I guess, ironically, I plastered their banner ad to this blog there on the right when I had lupus and just didn't know it yet.)
And because lupus is so different for every person and over the course of the disorder, I can only tell you how it has affected me so far. It is relatively mild for me right now. My hope is (if I do, in fact, have it, of course) that it will stay that way. And I should live as long as I would if I didn't have it, especially with no kidney involvement.
I'm trying to build more rest and sleep into my schedule. And against every natural tendency I possess, I'm trying to actually listen to my body and rest when the most minor of lupus symptoms arise. Instead of pushing myself until I crash for a week. Or a month. Or longer. Other than that, I'm making no lifestyle changes at the moment.
My rheumatologist agreed that since I am responding so well to the treatment that my herbalist is providing, I don't even need any other medicine right now. And bonus: Since beginning the herbal treatment, not only has my health improved but I have stopped all five of the medications I had been prescribed to take on a regular, ongoing basis.
Which leaves me needing to answer one final question: How in the world is this a post about thankfulness?
The answer: Because I feel thankful.
This has been a rough year. A few months and a few problems ago, I felt overwhelmed just juggling a couple things. But right now, these last few weeks, I've honestly just felt overwhelmingly blessed and thankful.
I am thankful to be as healthy as I am. I am thankful that even though the Lord -- apparently -- did not spare me from this disease, He has blessed me in so many sweet and profound ways through it. He has been with me and next to me and I am thankful for that. And I am thankful that I can trust Him ultimately with my health and my life. I don't know how to say that without it sounding like a flimsy cliché. I just can't seem to do Him justice with words. Or actions. Or at all. So I'll leave it at that.
I am also thankful for the days and the times when I feel good. And I'm thankful that I don't take that for granted. I am thankful to have found two wonderful doctors who are compassionate and sympathetic. Who I feel comfortable with helping me make decisions about my health. And with no political intentions, I am thankful to have financial access to health care and treatments.
And the reason why I have shared all of this today -- now -- is because as I continually reflect each day on what I am thankful for during this month-long project, I could no longer wait to express my deep, deep thankfulness to the family members and friends who have stood with me, in front of me, behind me, beside me, around me as I have gone through these struggles and ultimately received this diagnosis.
I have felt overwhelmed and humbled and undeserving of their love.
It has truly been a blessing and a joy to feel their love in their reaction and response to this news. We've prayed together and cried together and laughed together and been angry together. There have been hugs and jokes and concerned questions and reassurances. Sometimes I think more for their own benefit than for mine, though I have surely benefited.
And though I am sick -- and may be for the rest of my life here -- I can rest in the sweet love of an amazing group of people who rally and support and have my back no matter what tomorrow holds. One of the sweetest blessings of God.
For that, I am so very thankful.
-Dr. Lewis
There are moments in life that feel surreal.
I remember the weekend I met Johnie. When our eyes locked and I felt electricity in my veins and something inside me knew this was something special. That my life could be changing forever. More than seven years later I still remember that feeling and still wonder if it actually happened or if I dreamed it. Or at the very least have over-dramatized it.
Unfortunately not all the unbelievable moments in life are that amazing.
It was October 16th. I think it was raining. My grandfather -- who raised me (read: like a father) -- was in the hospital and we weren't sure when or if he'd get out alive. I had already missed too much work and cancelled two doctor's appointments that week. Physically, I felt okay. Given the circumstances. I had felt at least okay for weeks. And I wanted to cancel the third appointment.
But I had been waiting for months. I had already paid out my deductible this year on several other doctors and had a doubly-confirmed set of abnormal lab results. After a year and a half of illness and frustration and confusion over what was going on I wanted this expert's opinion. And I didn't want to wait any longer.
So I took more time from work and left my family to drive an hour and a half on winding Kentucky highways to the only rheumatologist in the world who came recommended by a friend and nurse. (For full disclosure, I didn't realize he was that far away when I took the recommendation. And as I told him, I was hoping my first appointment would also be my last at his office.)
Like a dog on a bone -- unwilling to stop -- I visited doctors and specialists all year who didn't listen or who dismissed what I was saying. Who refused to do the lab work I asked them all for. Who gave me treatments that turned out to be ineffective. Or suggested medicines to mask certain symptoms at the price of exacerbating others. As time wore on, my conviction only grew. I must have some sort of hormonal imbalance. Some type of thyroid issue at worst.
Finally, 14 months and five doctors in, one finally agreed to do part of the lab work I had been asking for. He made sure to tell me that he was fairly certain that all my seemingly random health problems stemmed from depression. And before drawing my blood, he asked me to make a game plan for when the results came back normal. "Because they will," he said. "You just need to figure out what to do to make yourself happy."
I thought I was happy and would be especially so if I felt better physically, but he was sure it was the other way around.
I got a letter the next week saying my lab work was normal and no further testing would be needed.
Except by now I was so fed up with modern western medicine that I began seeking out alternatives. When I got that letter I already had an appointment with an internationally-respected herbalist who I hoped would actually listen to my concerns about a potential imbalance and offer me something other than hormonal birth control.
I requested a copy of the results to take to my appointment and noticed there were some things out of range. My super smart medical scientist friend assured me those out-of-range results were not normal and should be retested.
At my very last visit in the office of the most disrespectful doctor I have ever met, I got an apology about the letter being sent prematurely and more blood drawn. The second round of lab work confirmed the abnormal results were still abnormal.
In the arrogance of his premature diagnosis he at least had the forethought to test for something I hadn't requested. An autoimmune disorder I had never heard of, Sjogren's Syndrome. That test came back fine but was part of a panel of tested antibodies. Three others were abnormally high.
For all I love about my herbalist, he is reluctant to label diseases. He is adamant that he treats people and not diseases. His holistic treatment has made me feel like a normal person again both in and out of his office. But I still wanted an answer clearer than the one he offered.
I recounted this whole 18-month-long story to Dr. Lewis through tears. And was comforted by sarcasm, laughs, sympathy, concern and outrage at all the right junctions.
"Your symptoms and your lab work, they all indicate lupus. I'm sure you were expecting me to say that word," he said.
All of my searching on the internet and in books and conversation linked my lab results with various autoimmune disorders. The anti double-stranded DNA antibody -- more than ten times higher than normal for me -- was linked almost exclusively with lupus in everything I read and heard.
I knew about lupus. I have family members with lupus. I have friends with lupus. I've advocated for lupus research. I've written about lupus. I did not have lupus.
The surest sign of my disbelief found in my now dried up tear ducts. Fully composed, my voice was steady.
"Yes. I know that my lab results are typical for someone who has lupus. And I know that a lot of my symptoms are experienced by people with lupus, but I don't think I have it. I don't have the pain people with lupus have. My joints are okay. I thought you could tell me what is going on."
He gently explained to me "the thing about lupus" and how I still fit the criteria for diagnosis even absent of joint involvement.
"But I was thinking maybe the lab work was just a fluke."
"We've proven it's not a fluke."
I continued to argue. He continued to persist. I realized I wasn't going to convince him I definitely did not have lupus and gave up. I asked questions and he answered them. Then he ordered more lab work and scheduled my next appointment.
"I'm sorry, but this won't be your last time, unfortunately. There's not a one-shot cure for lupus."
"You should really get on that before my next appointment."
Laughter and then seriously, "People are working on it."
With everything finished I walked outside and sat in my car. I had been in there for a while. The work day would be nearly over by the time I made it back and I knew I wouldn't get anything done at the office anyway. I needed to make that call. What would I say?
Wait a minute. Did the doctor say I have lupus? He didn't say he thought I might have it. Or that I could develop it. Or that we needed to run more tests to confirm it.
Suddenly the months of waiting came to a screeching halt. And it felt like I had been given my answer too soon.
The tests were to measure kidney functions... to see how the lupus might be affecting my kidneys. The follow-up appointment was to monitor the activity of the lupus. Were the doctor's exact words 'it's lupus?'
I reached for the door handle. I needed to go back and make sure. But I couldn't think of a graceful way to approach the receptionist and say, "Excuse me. I was just in here ten minutes ago. I thought the doctor said I had lupus, but that can't be right. Can you tell me again what he said?"
I stared at my phone, work number dialed in and couldn't hit send. I didn't know what words would come out of my mouth and I couldn't tell my co-workers this unacceptable diagnosis first. So I called Johnie.
We chatted. He gave me an update on my grandfather and his day. Then, "How was the appointment?"
What should I say? "It was good. I really like the doctor."
"That's good."
I should say it. "He thinks I have lupus."
I heard a word -- or maybe it was just a sound -- catch in his throat. Then sobs. And finally, "That's not what I wanted to hear."
I don't think I've ever felt further away from him nor have I ever wanted to close the gap between us faster.
The drive home was twice as long as I kept trying to figure out how I had dreamed or misheard the news. As I tried to figure out how to break the news to this person and to that one. And in the days that followed, the struggle continued.
For all my training and obsession with communication, I felt entirely incompetent this time. In what order should I tell people? And in what medium? And when? Just the telling felt overwhelming.
I am sure that there are some of you reading this who know me and are dear to me. There are friends and family who I haven't told yet and you may be one of them. I'm sorry. You don't deserve to hear this news in a blog post. I am blessed to know and be close to such an amazing group of people who cross geographic and ethnic and economic and social and religious borders. I don't know how I could find the energy to tell them all (you, if you are reading this) individually.
As I come to terms with this diagnosis and what it may mean for me, I just felt like it was time to go ahead and throw it out there so I can begin the process of moving forward. I hope you understand.
Just as I did in the months before the diagnosis, in the three weeks since I've still been trying to link this or that symptom to this or that cause. Sans lupus.
I'm tired because I'm stressed. It's normal for people to get headaches sometimes. That dizzy spell was just a fluke. Some people just have myriad skin problems that don't respond to medicine. I don't know why I've been nauseous all day. Or all week. I just have bad eyes. This is nothing. That is nothing. No big deal. It'll go away. I just need to get things balanced out.
I'm starting to realize it's all probably the lupus. Putting the pieces together has been bittersweet. That random short swatch of hair I've worked to hide every morning these past few months. Probably lupus. Being unable to walk three miles one day, but up to a ten-mile jaunt on another. Probably lupus. Mouth sores. Probably lupus. Absolutely no weight loss despite weeks of dedicated effort and then sudden, unexplained weight loss. Lupus. Lupus. Lupus. Stupid lupus.
And still -- don't laugh -- I think maybe not.
I got a call on Friday with those latest lab results. Thank God, my kidney functions were normal. The lupus has not affected my kidneys. The nature of the disease requires me to tack on an obligatory "yet" here. But there's no denying this is wonderful news any way you look at it.
The nurse added, "The rest of your labs show minimal lupus activity right now. Unless you have a flare, we'll see you for your follow-up in January."
You mean he thinks I have lupus?
Obviously I haven't fully come to terms with this myself. I don't know when or if I'll ever be comfortable claiming I'm having "a flare."
And I can't help myself. I just can't help but wonder if some day, sooner or later, I'll have to rescind this post and tell everyone I don't actually have lupus after all, by way of misdiagnosis or misinformation or misunderstanding or miracle.
If after all these words you're still confused about what lupus is, I can tell you that I'm (obviously) confused, too. The Lupus Foundation of America has the most reliable information if you'd like to learn more. (I guess, ironically, I plastered their banner ad to this blog there on the right when I had lupus and just didn't know it yet.)
And because lupus is so different for every person and over the course of the disorder, I can only tell you how it has affected me so far. It is relatively mild for me right now. My hope is (if I do, in fact, have it, of course) that it will stay that way. And I should live as long as I would if I didn't have it, especially with no kidney involvement.
I'm trying to build more rest and sleep into my schedule. And against every natural tendency I possess, I'm trying to actually listen to my body and rest when the most minor of lupus symptoms arise. Instead of pushing myself until I crash for a week. Or a month. Or longer. Other than that, I'm making no lifestyle changes at the moment.
My rheumatologist agreed that since I am responding so well to the treatment that my herbalist is providing, I don't even need any other medicine right now. And bonus: Since beginning the herbal treatment, not only has my health improved but I have stopped all five of the medications I had been prescribed to take on a regular, ongoing basis.
Which leaves me needing to answer one final question: How in the world is this a post about thankfulness?
The answer: Because I feel thankful.
This has been a rough year. A few months and a few problems ago, I felt overwhelmed just juggling a couple things. But right now, these last few weeks, I've honestly just felt overwhelmingly blessed and thankful.
I am thankful to be as healthy as I am. I am thankful that even though the Lord -- apparently -- did not spare me from this disease, He has blessed me in so many sweet and profound ways through it. He has been with me and next to me and I am thankful for that. And I am thankful that I can trust Him ultimately with my health and my life. I don't know how to say that without it sounding like a flimsy cliché. I just can't seem to do Him justice with words. Or actions. Or at all. So I'll leave it at that.
I am also thankful for the days and the times when I feel good. And I'm thankful that I don't take that for granted. I am thankful to have found two wonderful doctors who are compassionate and sympathetic. Who I feel comfortable with helping me make decisions about my health. And with no political intentions, I am thankful to have financial access to health care and treatments.
And the reason why I have shared all of this today -- now -- is because as I continually reflect each day on what I am thankful for during this month-long project, I could no longer wait to express my deep, deep thankfulness to the family members and friends who have stood with me, in front of me, behind me, beside me, around me as I have gone through these struggles and ultimately received this diagnosis.
I have felt overwhelmed and humbled and undeserving of their love.
It has truly been a blessing and a joy to feel their love in their reaction and response to this news. We've prayed together and cried together and laughed together and been angry together. There have been hugs and jokes and concerned questions and reassurances. Sometimes I think more for their own benefit than for mine, though I have surely benefited.
And though I am sick -- and may be for the rest of my life here -- I can rest in the sweet love of an amazing group of people who rally and support and have my back no matter what tomorrow holds. One of the sweetest blessings of God.
For that, I am so very thankful.
Thursday, September 12, 2013
I choose authenticity.
Vulnerability sounds like truth and feels like courage. Truth and courage aren't always comfortable, but they're never weakness.
-Brene Brown, Daring Greatly
I feel like I need to come clean. I haven't been completely open with this blog. I've been holding back. I've been too scared to say what I really wanted to say because I was (and am) afraid. Even more afraid than I initially realized when I told all my friends how reluctant I was to start this kind of blog. Of people reading. Of people not reading. What they may think or not think. Do or not do.
And there's more: Right now I don't know when -- or even if -- I'll find the courage to say what I really think and feel. I'm not even sure if blogging is even right for me.
I've been struggling with being more open, more real, more vulnerable in my personal life and in that process I've realized that I haven't been truly authentic in this blog either. I think I'm going to try to do better here, but it's still much too early to know whether or not I'll chicken out.
But at least being open about not being open is more open than I have been. If only barely.
Because of my private nature, many of my friends and family members throughout the weeks and months and years have encouraged me in their own various ways to be more open, more authentic. A few weeks ago, when discussing this blog with a friend, she mentioned the work of Brene Brown.
It was a hectic time for me, but I mentally filed the name away, deciding to google her TED talk later. Later never came. The following week I was doing a completely unrelated internet search on a topic for my husband, clicked on a blog related to that search and saw in the sidebar the picture above. I choose authenticity. Intrigued, I clicked. It was Brene Brown's website. I decided I should probably listen up.
In one of her TED talks (which you can find on her blog), Brene asks her audience if they feel like admitting their struggles and failures is weakness. Hands go up all around. (Mine would have too.) Then she asks if they viewed the others on the stage before her during that event who admitted their failures and vulnerabilities as courageous. More hands in the air. (Mine would have gone up higher.)
But still, recognizing the connection between vulnerability and courage doesn't necessarily make it easier in practice. I thought back to times in my own life when I've taken leaps of vulnerability and what Brene calls "the vulnerability hangover."
Some of my more open friends talk about the relief that comes from talking and sharing. The feeling of a burden being lifted. For me, after I let someone in -- no matter how much or how little -- it's brutal. I contemplate running away. Physically running away, cutting all my ties, changing my name and starting a new life. Seriously. And I never want to see that person who now "knows" ever again. Ever. It takes weeks and months for me to feel comfortable again. The vulnerability hangover.
But I can say that there is healing in being open, even if it takes years.
When I thought back over blog-related vulnerability, I couldn't help but recall writing my marriage proposal story. It took me four years to work up the courage to tell any other living person the details of Johnie's proposal(s) to me. Whenever people would ask, I would say, "Oh, it was low-key." If they pressed, I would say, "It was private and we decided not to talk about it." If they were too close for me to keep things private from them, I would say, "It was a little disappointing and so I just don't want to talk about it."
In truth, it was very disappointing and embarrassing to me. And I was afraid that if people knew all the lackluster details they would think I had failed somehow in my husband-picking efforts. That they would judge me, my husband and our marriage as somehow less than. And during those four years, any time marriage proposals would come up in conversation, my heart would sputter and my mind would race for what I could say when eyes turned to me. During those four years, thoughts of my proposal would regularly bring me to tears.
I began writing the story of our relationship still deciding how I would handle the proposal story. I didn't think I would have a big audience, but when the day came I had an uncomfortable number of eyes on the story. I knew I couldn't just skip the proposal and I didn't want to lie. I thought about making the proposal a couple sentences at the end or beginning of an unrelated post: After a low-key, private proposal, wedding plans began in earnest...
But that was cheating the story. So I took the plunge and told it. And then fought waves of nausea. Hovered my mouse over "delete" and resisted the urge to click.
I received more feedback from that blog post than any other I have ever written. Private messages from girls also embarrassed and disappointed by their proposal. I had unknowingly created a secret sisterhood without even trying.
It didn't happen overnight, but several years after being open about my painful proposal I've healed from it. I laugh at it. It really doesn't bother me anymore. I think it is a beautiful, quirky part of our story. I went back and re-read the account I had written a few years ago and realized I add in even more details when I re-tell the story these days. I have some trouble remembering why I thought it was that bad for so long.
So even though I fully recognize the pay-offs of vulnerability, I still can't find the strength to make the jump yet. But maybe tiny steps of boldness are better than being fearfully frozen still.
And maybe you can join me in the scary, daunting, but very-much-worth-it quest toward living openly, wholeheartedly.
It is not the critic who counts; not the man who points out how the strong man stumbles or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly. -Theodore Roosevelt
www.brenebrown.com
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