Monday, December 21, 2015

darkness is as light with you

Last week, a trusted friend told me that he does not believe God authored my disease. Immediately upon hearing this my heart became tense. God's presence in all things has formed the basis of my faith for as far back as I can remember. I grew up in a beautiful church where we were not afraid to admit there is pain in the world or claim the original cause as our own depravity. At some point, I heard that God used suffering to bring us closer to him - to get our attention. And not only used, but caused. Authored. But I am staring to wonder if that's the God that loved us before the foundation of the world - the God that is coming in four days to save us. I think at some point I misunderstood.

Maybe my disease was caused by a wrinkle in my timeline a few generations back, a blip that went unnoticed and grew silently over time, undiscovered. Years later, it surfaced in my body and when it did it grieved the Lord. He knew it was coming but he didn't author it. He didn't select me to hurt in this way to strengthen me, or bring souls to Himself, or show His glory by the way I react to pain. I think this view makes Him no less sovereign.

My friend's comment has bothered me all week but not in the way I expected. It is bringing everything to light. I think a while back my theology veered off track. I leaned half a degree off course and now, a couple years later, I'm a thousand miles away. Alone in a desert that is dry and hot and without shelter and the Lord isn't here. My misdirection started because I was afraid of creating a God in my own image - a God that hates disease as much as I do. The fear of getting Him wrong left me with a God that is hard and without compassion. A God that tells me to suck it up, to get my shit together, to stop crying. A God in whom I can't confide. But I know the real God rescues.

If God did not author the pain, it changes everything. It changes the depth at which I am free to grieve. It releases gratitude in my heart without having to reason it into release. It alters the way I see my medication, from a sign of human brokenness to a sign of God's mercy.

I fight off a constant wave of shame each day when I take my medicine - specifically my pain medication. I feel like a failure. Like I should be able to improve my health in a more sustainable way - yoga, diets, holistic medicine. Pain meds don't require anything from me and as the dose creeps up over time I get scared that I am too reliant, or that somehow a part of me is being lost in them. But today, when I considered that God may not have caused this illness the shame over the drugs suddenly flipped into joy and gratitude. The medication became a mercy that He set apart for me as an avenue for joy and peace. This isa profound  compassion I had not been able to understand before now.

I thought that when a fundamental belief is questioned everything around it shakes and breaks down; Faith becomes brittle and we lose our sense of self. But nothing broke. Instead, mysteries have started sorting out and a weight has lifted from my soul. Something inside is healing. Light is outweighing darkness. Maybe this life is not as treacherously long as it feels.

Whether I ever figure out God's role in sickness or not, there is hope today in the thought that I have so much more to learn about love and mercy. And lately hope has been hard to come by.

Monday, April 27, 2015

anywhere I would have followed you

I often think about when I will be able to go running again. I imagine waking up at 6 am, tying on my shoes and heading down the gravel alley behind my house towards Oakland Cemetery. Mid run, I stop on the west side of the cemetery where the city skyline is visible, breathing in the quiet. When I thought about this today, Kylie Myers came to mind -- Kylie singing in heaven with a strong voice, laughing and making a scene (every 12-year-old's right), hugging her friends in the big, all-encompassing way that I've heard was her style. She couldn't always do that here -- she was limited by what her body would allow.

If I were to make Kylie Myers a body, it would be very different from the one God made for her.  Hers didn't reflect the unstoppable and energetic girl I've heard about from my mom. If I made her a body, it would be strong and whole and still here. But I can't, and I have to believe that the one she had was best. Maybe the cancer was part of making her into the girl I've heard described. A girl that comforted her parents during her treatment and that didn't give up hoping. It all leaves me wondering how much the state of our bodies determines our personhood.

My mom called me a liar today. She was right. I was in severe pain -- struggling to bend my wrists and knees. I shuffled into my doctor's office and my mom took a seat in the waiting room while I signed in. After a couple exchanges, the receptionist asked me if I was okay. I forced a smile, "Just really tired." The second after I responded to her, I heard my mom hollering across the room, "You're lying! Tell her the truth. That's a lie!" I gave my mom a nervous laugh and quickly finished signing in, silent and awkward.

I believe in honesty. Not the kind of honesty that has me trampling on people with every one of my thoughts and feelings. But the kind of honesty that stops eluding personal questions, volunteers information about myself, and dares to ask friends the questions that crack their souls open. Unfortunately, believing in honesty does not mean that I'm good at it. I could get an award for being able to change the subject flawlessly when a friend asks me a personal question that I don't want to answer. And yet, I believe that I'd be a healthier person if I would tell the truth. But I don't understand how to be sick and to be me. No matter how much I want to believe it is part of my story, I separate the two.

We call chronic and terminal disease 'evil' and 'foreign'. We run 5k's and wear rubber bracelets and dump ice water on our heads to raise awareness and fight against them. We make disease into the enemy and believe that if we were to eradicate it completely, we would be more whole. And at the same time, it is commonplace to believe that trials make us strong, beautifully wise, and faithfully persevering. Resilience earns respect. We trust someone more when we know that he or she has hurt deeply. So should I remember Kylie with the cancer or without it? Can the two be separated if they were together at the end, and is that even what Kylie would want?  If the hardest, darkest, scariest things are also the birthplace of the most beautiful things, for what then do we pray?

If we continue to see diseases as evil, are we making God smaller?  I'm having trouble getting behind the aim to rid the world of evils like cancer because I want to believe that there is good in it -- that it was somehow intentional. Maybe then the possibility of another painful day tomorrow won't overwhelm me. Maybe then there would be something okay in Kylie missing her Broadway debut and Barbara not standing by for Norah's birth.

My disease is literally a part of me. My body is attacking itself from the inside out. It is my flesh and blood that are out of control. A year ago, I wrote that there must be a reason that Barbara died, but that I don't need to know it. I forgot to add that there must be a reason that I'm in pain, too. I guess I want to know if it's okay to mourn my loss when it's so much of who I am now. My mistake could be assuming that 'strength' looks like not letting the pain get into my spirit, when really that is the entire point. Because the latest, arthritic, nonathletic version of myself actually cares for people. She cries when she sees someone in physical pain. She understands anxiety and how it can close the world in around a person. She has patience for anger, and is committed to helping people grieve injustice.

Maybe there aren't 'versions' of us. And maybe grieving looks like honesty -- actually telling receptionists I feel poorly when I do. And not pretending like it doesn't hurt to walk, when it does. I wonder sometimes if life is a progression of us growing in our desperation. I don't understand it, but there is hope woven into admitting when our hearts are breaking. I want to get to a point where I'm not talking out of both sides of my mouth -- where I'm not praising trials for the character and bravery they build, but then cursing them for the pain. I want them to only be one thing, no longer both good and bad.

I don't want to be ashamed when my body limits me. I don't want to feel like something inside me is broken all the time. Because shouldn't hope heal it all? I think I finally get what we mean when we say that God heals all our diseases. It isn't literal. Obviously, disease has taken people that we love away and it won't stop while we're here. But we are healed because somehow it has been made good. Honestly, I don't yet see how with Barbara, and definitely not with Kylie, but I do with myself some days. And for now, that will have to be enough.

I know there is mystery. That the world isn't black and white and that cancer can create pain and beauty, together. I know. I know that I can hate disease and be thankful for it at the same time. But I'm not sure I can fight alongside the masses for the cure. I don't want to feel the damage all the time and I don't want to expect this world to be whole. I think it's too hard for my heart. I would rather trust that the good that comes from it will sustain us. And that the hope will get us through this world into the next one.
Kylie on Broadway.

Tuesday, September 23, 2014

decide what to be and go be it.

I've been thinking about purpose lately and I've found myself wondering what I want my purpose to be - because, in a lot of ways, I think we choose.

On a walk to the farmer's market a month ago, I asked Liz what she finds herself questioning most, four months after her mom's death. She told me she worried she wouldn't change because in her head, growing in a significant way would give purpose to the loss of her mom. Her response punched deep in my gut but all I could think to say was that it sounded like a stifling amount of pressure. So I awkwardly assured her that she's already changed - I do see a different sort of gentleness and compassion in her. But I hated saying it. The last thing I want is for Liz to put any sort of pressure on herself and it felt like by affirming the change I was confirming that she could make her mom's death worth something. 

I thought about our conversation every day for weeks, taking entirely too long to realize that I face the same kind of fears for myself. Since I live with chronic pain, I feel like I should be helping people with the same story. There is a crushing pressure that I'm supposed to use my specific circumstances in a certain way. I constantly weigh quitting my job as a restaurant designer against working in healthcare design: committed to helping people who are sick find healing and know hope. Or focusing on humanitarian architecture centered around people with disabilities.  Or quitting design entirely and trying counseling - something less first-world than design.

But I have to believe this isn't all a riddle. Even after all my weighing and wondering, I am not meant to sit around and piece together my life experiences to solve the puzzle that will lead to my purpose. I'm incredibly unsure of this, but I'm starting to believe my purpose is simply to know my friends and family in the most ordinary ways. I know that seems small when reading about ISIS, Syria, and Ebola, but I need to believe that living a life without a mom or with a swollen and arthritic body, and still caring to know and love the people around us can be a purpose that is worth something. Because that is the story Liz and I were given, and what are we without them? I know that if I was anywhere else in the world last April when Liz lost her mom, no matter how selfless or adventurous or purpose-filled my job seemed, the only place I'd have wanted to be was outside Barbara's hospital room holding Liz's hand. Anywhere else would have been wrong. That has to mean something.

Lately, a purpose-filled weekend looks like Jess and I spending three hours Saturday morning on the couch, coffee in hand, updating each other about our work week. When Abby and I make breakfast for dinner and scheme about beach trips down to the Keys and train rides up the coast to Maine. When Liz and I go shopping because we have a coupon and not because we need anything. Those moments are never just about work stories, vacations, or shopping. They are filled with laughter, honesty, the courage to admit pain, and the healing that comes from being heard. They're my favorite days. They aren't about giving and getting advice. They're about assuring each other we are loved by hearing each other. I think we are here to know each other and I think that may be all. 

It all makes me wonder how often, when I think of God, I see him smiling at me? Since April, when Liz's mom died and my body started getting worse, I've been aching for Him to come down here - if only for an hour - to help me breathe deeply again. To tell me what to do with the sadness. If He came I wouldn't want to ask him anything. I'd just want to sit and maybe hold His hand, memorizing what it's like to be beside Him and not feel like I'm messing up, disappointing Him, or not doing enough. I wouldn't want Him to explain my pain or the decision to take Liz's mom away. I think if He did He'd seem smaller, because I hope it's not an easy explanation. And either way I don't need it.

I think we'd just sit together and my world would feel whole again. 

Sunday, May 11, 2014

a letter

Last week, Liz asked if she could write about her mom here, in a place that is permanent and safe, to share what she has been feeling and choosing to believe over the last month. Her words are a raw and courageous picture of God's nearness in the dark. I'm honored and excited to share them here.

To my mom on Mother's Day:
If I could have had the courage and strength to stand up at your funeral and say something, it would have gone something like this- 

My mom was kind, welcoming, and loving.  She was smart, silly, stubborn, and practical.  She thought through everything she did before she did it, sometimes over-thinking things.  She was a lot more creative than she gave herself credit, and she was the best cook I've ever known.  My friends in high school would always joke that there was never any snack food at my house, but there were always ingredients to make a gourmet meal.  And it was true.  My mom never did anything halfway.  I'm a lot more similar to her than I thought, but I see it more everyday.  She wasn't the perfect mom and I wasn't the perfect daughter, but she loved me so well and I tried to love her back the same.

There are so many things that I'll never forget from these past few weeks of her being sick, but two that I want to share right now.  I will always remember the attitude that my mom had in accepting the sovereignty of The Lord.  It was all summed up in one look that she gave my dad.  She was sitting in her hospital bed watching her blood pressure was drop and knowing it wasn't getting better. And she gave him this look that said this wasn't what she wanted, she didn't understand, but she trusted The Lord and knew He was sovereign.  It wasn't a helpless look, it was actually a look of assurance.  It seems strange to get all that from one look, but it was there.

The other memory is that before my mom passed, while I was sitting next to her bed in the ICU, she told me how proud she was of me and that there had never been a day in my life that she had been disappointed in me.  I will cherish that conversation forever.  

While I did believe her that night, there was still a part of me that wasn't sure it was really true - That she had never been disappointed. It wasn't until after she passed that I was going through one of her drawers at home and found her prayer journal.  I started flipping through it, and saw it was from 3-3 1/2 years ago- right around the time I started dating Will, got engaged, and prepared for our wedding.
As I read through I realized a few things.  First, that my mom relied, leaned on, and trusted in The Lord more than I had even realized.  She always came across like she had everything together, but I realized that all her strength had come from The Lord- which I greatly admired.  Secondly, I saw how much she prayed and cared about our family and her friends. (A lot of you at the funeral were mentioned for prayer or thanking God for your friendship.) She trusted God for the future of her family, whether it was with my dad's job, or mine and Tim's life decisions.  Lastly, I realized that what she had told me in the hospital was true.  I got to read through her excitement over my engagement, wedding dress shopping, and wedding planning.  I kept looking for places where she would complain to God about how I hurt her feelings in the process or wasn't appreciating her help, because I remembered acting that way at time, but it wasn't there.  There wasn't one word written that showed her disappointment in me.  I couldn't believe it.  I couldn't believe how much she really loved and cared for me, even though I had seen it and felt it everyday of my life.

So mom, if you were still here, I would tell you thank you, for the millionth time, for being my mom. I wish I could say it a million more times.  It breaks my heart every time I think about you not being here anymore because I still need you so much.  You have given me so much guidance, like how to love my own family well by the way you showed Tim, dad, and I unconditional Godly love for the time you were our mom on earth.  There are so many more things beyond that, but the most important was you being obedient to The Lord and raising us up to know our Savior, Jesus.  The last thing you ever gave to me was a verse from II Cor 4:16-18.  I will cling to that not only because it's the last gift I have from you, but because it contains the promises from God that will hold me through this life.

But I still hurt.  I hurt for my dad - that he has to continue living this life without you as his best friend.  I hurt for my brother - that he lost his mom before he even turned 30.  I hurt that my nephew Caleb, at only one years old, will only have pictures to remember his Nana.  I hurt that my kids will never know you. I hurt that at 26 I don't have my mom anymore that I need so badly.

But through that hurt, I am thankful for the 26 years I did have with you. I was not promised to have a mom who would die in her 80's or 90's, and I also wasn't promised a loving, caring mom that blessed my life and brought me joy and laughter.  But that's the kind of mom I received, and I will rejoice that The Lord gives good gifts to His children.  I will choose to delight in what The Lord has done for me. He has always been faithful to me and never let me down - even in times like this when I'm sad and confused.

I love you, mom.  I will miss you every day. And I rejoice each day knowing I will see you again in Heaven.

Come quickly, Lord Jesus, come.

- Liz J. Mott 

Sunday, April 13, 2014

when oceans rise

I have a huge family. 
After a week of tears, that is one thing I want to remember.

I am the youngest in my family, with an older brother and sister. My sister, Jessica, is my best friend, my roommate, my accomplice, my wingman.

But I have more than one sister. 

Mary Beth, Liz and I have known each other for every life milestone. The first day of middle school. The last day of eight grade. Every first date and every breakup. The panic of public high school and the joy of college acceptance letters. Lizzy and I were college roommates for four years. As long as I can remember, we've been each other's first call in times of crisis and celebration. 

After graduating from college, the three of us met for dinner as often as we could - planning Lizzy's wedding, toasting new jobs, and somehow surviving the awkward transition from college to "real life" together. That summer, we went from store to store across Atlanta to pick out Lizzy's wedding dress. But last Sunday, Mary and I helped pick out the dress and shoes Liz wore in the receiving line at her mother's funeral. I think this is what Jesus meant by family. 

A part of the world broke on April 4th, close to 7am, when Liz's mom left this world for a far more beautiful one. I had the privilege of holding her hand for a moment the night before she left us. What I think I'll always remember is that she was concerned about me in that brief moment. I'm not sure there was ever a time that she wasn't taking care of me.

I was truly raised by a village. My village is a small Christian school my Dad had a large part in building. And that's where I found my family. But the thing about it is that it's not just friends that become sisters and brothers. It's parents that become aunts and uncles. Parents that I love in the same way that I love my own mom and dad.

Barbara Dennis was lovely and kind. Her confidence was contagious, and she raised a strong, brave woman that I don't want to live without. I've lived enough to know that somehow we'll survive this,  but I want to protect Liz from this pain - to take the blow for her. When Barbara was diagnosed with cancer three weeks ago, I started planning how we'd beat it. I wanted to drop everything to be available to Liz. My plans were probably unrealistic, but I wasn't going to stand by without doing something. 

But instead, all I could do was stand in the hospital hallway beside Mary Beth on Friday morning and hold Liz's hand, in silence, because there are no words on this day. 

I've wrestled with this post for a week now. I didn't want to publish it, but there is an ache in me that requires I acknowledged this loss - even in this tiny blog that only my family and a couple close friends read. If I've learned anything from growing up it is to acknowledge the pain in the world. To call it out and to mourn openly because otherwise it can swallow us.

I am heartbroken for Lizzy.

I wonder why it is that we are always surprised by pain. We are somehow wired to be hopeful. I think it creates deeper wounds, but it must also make us more brave.  But this time, I don't want more bravery. I just want my best friend's mom back.

Tuesday, January 14, 2014

feminism part 1: a redemptive movement

About 6 months ago I started calling myself a feminist. Everyone is this year - Miley, Beyonce, John Legend, Amy Pohler. It is all around me at work, in my church, and all over the media. My reaction has been so passionate and unrestrained that it's taken me by surprise.  I've found myself in departmental meetings fist pumping for new female hires, not sure if I even agree with my reaction. And in the last couple months I'm finally understanding why.

I don't want to be a girl that tries to make men and women the same. To say that we are equally talented at all things. We just aren't - my coed flag football team alone proves that. I don't want to be a girl that is waiting to pounce on anything discriminatory or unfair. I don't want those things to fester until I'm the victim and the world owes me something. But I also don't want to be the girl I was a year ago, heartbroken by my strengths I was told I wasn't created to use, and confused by the God that gave them to me.

Feminism started for me in February, sitting across from one of the most gentle men I've known as he counseled me through deep anxiety and doubt. We'd talk and then he'd ask me to write. I would stare at the blank paper knowing I'd have to read it aloud, and I'd panic thinking it had to be beautiful - the perfectly sound words of God. But in my desperation I wrote. First, sentences. Then pages filled with words that are unmistakably His, just for me.  Words that are gentle and kind. Empowering. True. Words that are teaching me to trust myself and forgive myself for the ways I thought I wasn't measuring up. Words I wish every woman could hear.

Feminism for me is about knowing that I am loved as the person I am in this exact moment. It is about believing that I am strong, capable, and gentle. It is about knowing my opinions of theology, business, and the world are valuable, and trusting that what I desire matters. It is about paying close attention to the shoulds and not letting them own me.

More tactically, it is believing my commitment to a career I am passionate about does not make me less of a Christian woman. And that my disinterest in motherhood does not mean I am damaged. Because although I'm single, these expectations have released a huge amount of pain and fear inside of me. Dating has filled me with crippling anxiety as the desires of my heart don't align with who I hear I should be as a godly woman. I see a list of requirements I know I can't live up to and still be myself. I fear I'll disappear - because I've let that happen once before.

I started reading a book last week on feminism and Christianity. It provides biblical basis for some of the things I've heard God whisper to me over the last year - things that I've wept over in the past because I couldn't find them in scripture. The author refers to feminism as a redemptive movement. She argues that any movement bringing more justice and human flourishing into the world is part of the Kingdom of God moving on earth. All of me agrees.

I am a feminist. But I am nothing if not His.

"But you are a chosen race, a royal priesthood, a holy nation, a people for his own possession, that you may proclaim the excellencies of him who called you out of darkness into his marvelous light."
1 Peter 2:9

He has called all of us, alike.

Thursday, November 28, 2013

We are all full of the color that has not been dreamed.

Ducking out of the 8 degree weather last night into the subway-level tunnels at Mayo, Mom and I started making a "thankful for" list. At first we were kidding, but somewhere after "last nights pizza calzone" I realized how much I needed the list. In theory, Mayo is a hopeful place with a lot of answers. But it was a dark place for me and mom. Everyone was sick, all around us. We spent over 10 hours waiting on an appointment we weren't sure we'd get. Every time I passed someone underweight or tired I wanted to ask if there was hope for them, and in turn, for me. It was lonely - like you're set apart from the rest of the world because of your illness.

I joke when I say it reminds of District 13, but I really do wonder if the author of the Hunger Games ever spent any time at Mayo. It always felt like we were underground because it was too cold to venture outside and all the buildings are connected by underground tunnels. Although parts of the building are beautiful, it is still sterile. They give you a schedule of your week with a barcode on it, and every time you check in for an appointment you scan it.

But there were also good parts - like the pianos scattered throughout the hospital campus and the large windows in the waiting rooms that overlooked the city. And I left with a lot of what I'd hoped for - a doctor who is on my side and series of tests that may provide some answers.

So here's the list.
1. Doctors that are listening and aren't afraid of a case that isn't textbook. And the hope that some day soon I'll have a diagnosis that makes sense and is manageable in the long term.
2. Taking turns with mom on who the sick one is (so I don't feel so broken) and watching her shuffle down the hallway at a ridiculously slow speed, faking a cough, when it's her turn. She's always been a good actress.
3. Telling my nurse as she removes my IV that the process always makes me think of the tree in Avatar. And seeing the confused look in her eyes right before she bursts out laughing - telling me she'll think of that every time from now on.
4. Sitting down on the marble steps in the lobby Tuesday evening beside my mom, listening to a woman play the piano.
5. Scoring a consultation with a Rheumatologist after 10 hours in the waiting room.
6. My sweet nurse rubbing my hand through my entire liver biopsy - she made me feel safe in a very foreign place.
7. Looking my Rheumatologist in the eyes (who the receptionist insisted looked like Sean Connery) as he explains that none of my symptoms surprise him and yes, even without a solid diagnosis, he's confident he can put my symptoms in remission.
8. "I'm not here to give you drugs that will make you live 10 days longer, I'm here to give you a good life." - Dr. de Groen
9. Finishing the tests and appointments two days earlier than expected, and Dad's amazing skills of persuasion to change our fight plans from Saturday to Thursday to get us home for Thanksgiving.
10. Sitting around the Thanksgiving table tonight at the Brawner's house, sandwiched between my parents, with the sweet reminder that even though we aren't related, the people around me are my family. And I'm home.