The Pager

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I have heard he is a Muslim man, but we never spoke about his faith. Muhammad is his middle name. I was captivated by his beauty. The most gentle voice. The purest eyes. He was a joy to work for. He was a patient teacher with our patients and with me. We had one particularly difficult patient. All of the attending physicians previously leading the service had spent as little time in her room as possible. She had been back and forth between the main hospital and the fourth floor long-term care facility for close to a year. She was frequently emotional and became offended easily with our attempts to care for her. Every day brought a fresh complaint. Other staff had softly muttered before entering her room, “Get in, get out” or simply passed her by during rounds altogether, saying “I’ll see her alone later.” He and I spent twenty minutes in her room every day at least, and once forty-five when she became particularly distressed. He was on his knees at her bedside for most of that time, holding her left hand with both of his. He did mutter softly before entering her room. “We must be as patient as Jesus Christ,” he had said, and then again as he caught my eyes and used them as a portal to my soul–“As patient as Jesus Christ.” He inspired the best in me, and he saw only the best in me, even when I failed him despite all my efforts to please him with my work as his resident. I was just so weak.

Hello, friends. Hello, readers who call yourselves friends but tear me apart (I just re-read the comment threads under my more recent posts–ouch). I have missed you all. I haven’t written in close to 21 months. The last time I wrote, I was not yet a mother of three, not yet a physician, not yet a disappointment to my parents. Much has changed in my absence. My third daughter was born healthy after a rather precipitous delivery in February 2016. Soon after her birth, I “matched” to my first choice residency program, where I am now a second-year resident in a three-year program. I’m thriving at work, and it is a privilege to be commanded with the duty of telling my patients’ stories as accurately and completely as possible. I am learning to marry the fear of making a mistake with the confidence that I have earned this position and am good at what I do. Both are necessary. I have learned much, and I have much to learn.

Both of these truths were solidified when I started my second year in our most difficult rotation, called “1909.” That’s the extension of the medical ICU phone, carried by the ICU upper-level resident, who happened to be me in July. For those of you who don’t know, July is the month when new doctors start their residency training, and the month when current residents advance to a new year with new responsibilities. In other words, stay out of the hospital in July. My nights went extraordinarily well, but they tested the limits of my knowledge and stamina. I’ve never been more proud of my work. I’ve also never utilized internet searches to the extent that I did during the nights of those two weeks. I know how to treat hypernatremia with carefully calculated fluid administration, and I know how to treat volume overload with cautious removal of fluid through diuresis. But wait–the two of them together in the same patient? That can be complicated at 3 am. Somehow, I left every morning exhilarated by the strong work I had done, and I was even complimented at the end of my weeks by the day-time attending physicians who noticed my carefully planned work-up, my well-justified orders, and my thorough documentation.

We rotated on an internal medicine day-time consult service in the week between our two weeks of ICU nights. When I started that service, I was almost half-way through a three-week stretch without a day off. After working nights, I struggled with night-time insomnia for that interim week of days. For some reason, the only time my body gave into sleep was when I was driving home from work every day. How convenient. I met him on Wednesday of that week, and he recognized my fatigue. “Do you want to round later in the morning?” he would ask in response to yawns he noticed from behind the arm of my white coat. I declined his offer, not wanting to delay patient care and hoping that my body would snap out of this soon. It did not, and he noticed my gradual decline. Blood-shot eyes with dark circles. Opting for the elevator when I always take the stairs. Coffee with lunch instead of water. Tears in my eyes when my pager went off with the tenth consult of the day.

We were rounding late one afternoon when my body defied my will over it, and I fell asleep during a patient presentation outside of a hospital room. I caught myself after what must have been only moments and tried to recover gracefully, but there was no elegant return from that. He had noticed, and I found myself apologizing profusely and fighting back tears, imagining what he would write on my evaluation for the rotation. It seemed like the height of unprofessionalism, to be so unengaged with rounds that I could fall asleep while discussing my own patient. His response shocked me. “When do you have a day off?” he asked. I told him that it would be after my next week of nights in the ICU–that I was in a three-week stretch without time off. His next words have been imprinted on my heart forever. “Roll your pager into mine. Go home, and don’t come back tomorrow. I will see all of your patients and all of the new consults.”

Roll your pager into mine.

I was on nights again the next week, but my day of rest had been healing, and I was ready. Again I worked carefully and wholeheartedly and was recognized for excellence. This second week was in the ICU at our VA hospital, and the hours were longer. The 15-hour work shifts and 1-hour of commute time (to and from combined) required that I sleep immediately upon arrival home and awaken as late as possible before getting ready for work. That afforded no time at all for my children, and I suggested that my husband and daughters visit my parents for the weekend. My sister and her children were planning to be there as well. It was Saturday night when I got the text from my sister. “Remind your husband to not engage dad when it comes to global warming,” it said, with the eye-roll emoji. My heart rate heightened. I could sense where this conversation was going, and I wasn’t there to reign it in. As more text messages unfolded, it was confirmed that an attack had been launched by my parents against my husband, and I wasn’t there to defend him. They blamed him for making me “liberal.” They accused him of pulling me onto “the bandwagon” that held the gay-loving tree-huggers. They told him they were disappointed that I had strayed from my upbringing as a result of our marriage. My dad had given an abusive and high-volume harangue, and I couldn’t let him have the final word.

My husband came home the next day and told me in his words how the conversation had gone, and I was devastated. I collapsed into his chest, and my daughters saw me cry for the first time. I eventually locked myself in my bathroom and called my mom. “It wasn’t him,” I said. “My beliefs are my own.” She had asked how I could worry about global warming or condone homosexuality when a literal interpretation of the Bible shows us that the former is not necessary and the latter is not acceptable in the eyes of God. “I don’t have a literal interpretation of the Bible,” I confessed. I’m not sure what she said after that. Her sobs overcame her words, and they were unrecognizable. The only one I recognized was “disappointed.” I told her that I loved her and that I wished she and Dad could be proud of me and accept me and agree to disagree. And then I had to leave for work.

In the days that have followed, I have had too many text messages from my dad to count. It’s an assault, bathed in dispensational “truth” and providing all the reasons why his faith is the only legitimate faith. I told him after the first series of texts that I loved him, but didn’t have the time to read them or respond, and that any free time I did have would be spent with my husband and daughters. Still he sends them. I finally had to put my thread with him on “do not disturb” mode because of the anxiety I had every time my phone vibrated in my white coat pocket. I am the mission failure, and the engineers are disappointed in their product and frantically seeking a solution. And they don’t even know a fraction of my journey or anything of what I have written about here. This severe reaction comes because I believe the scientific consensus on climate change. Because I believe there was a big bang. Because I don’t believe in a global flood. Because I believe that a loving God would not condemn someone for loving who they want to love. What if they knew I had denied his existence–or worse–cursed his name and affirmed over and over my hatred of him? Launching deadly attacks from cannons called Disappointment, through a fog called Dogmatism, into enemy territory–My Broken Heart. My husband and children the collateral damage. My own defenses swept away by a poorly timed storm called Exhaustion. We used to be allies. I was already fragile. Now I’m shattered. No will to fight. Barely a will to live. My phone alerting me like a pager in the night in an intensive care unit or on a busy consult service, except this time I have no answers. You’re living a lie. You’re a disappointment. No daughter of mine…

Roll your pager into mine.

Roll your pager into mine.

Those eyes that had compassion on me in my weakness. That voice that gently called my attention back to him when fatigue overtook me. Those words. Those precious, precious words that keep coming back to me now that my weakness has turned to brokenness.

Come to me, all who are weary and heavy laden, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.

Cast your burden on the Lord, and he will sustain you; he will never permit the righteous to be moved.

Roll your pager into mine. The modern day medical field version of Matthew 11 and Psalm 55. I saw Jesus in a Muslim man. The man who spent most of his time among the least of these. The man who found me in my weakness and spoke grace to me when I failed him. He bore my burdens that day, and his words have remained with me and been my only hope as I have fallen under the weight of the burdens that followed. He has no idea that being near him was the closest I’ve felt to God in many years. He left me with this serenity, this assurance that I do not walk alone.

Friends, I’m here, after nearly two years of absence, to ask you for that same assurance. I need you to bear my burdens with me, to shield me from these attacks, to remind me of who I am and what I’m fighting for, to carry me to higher ground. I am at the end of myself.

May I roll my pager into yours?

-J

 

 

Image credit: By Dme motorola.jpg: Starwhooperderivative work: VT98Fan – This file was derived fromDme motorola.jpg:, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=32400448

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Dear Dr. Robert Jeffress,

Below is my dear friend’s response to Dr. Robert Jeffress (specifically, to the sermon I referenced in my last post). Pascal’s faith is steadfast, and we likely disagree on many points we could discuss. This is NOT one of those, and I would happily add my name to the bottom of this letter.

Pascal—thank you, brother.

-J

russell & pascal

Dear Russell & Friends,

I’ve cc:ed you on my open letter to Dr. Robert Jeffress, pastor of First Baptist Church Dallas, Texas.  For point of reference, I’m responding to his sermon here:

Dear Dr. Jeffress,

My name is Pascal and I am a follower of Christ.  I have done so since I was a child, trained by imperfect but godly parents who loved me and taught me to to love scripture.  I had not heard your name or seen your face before you chose to address the world in the guise of addressing your congregation.  My first impression was that you must be a Republican politician.  Red tie.  Dark suit.  Dour expression with forced smiles.  When I searched your name, most posts were from Fox News.  First impressions can be illuminating.  Malcolm Gladwell would call it a blink.  That was type 1 thinking – – a heuristic reflex that recoiled…

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If Such a Thing as Grace Exists

 

 

I thought it was just my parents and a few others, at first. Then as public opinion rolled in on Twitter and Facebook, I realized it was most Republicans I knew. Then a few days ago, I saw the map of states whose governors are refusing to accept refugees—now a majority. I’ve read the posts that say we are at war with Islam itself, not with “radical” Islam or simply terrorism. I’ve heard the sermon clips that reference Acts 17:26 and describe closed borders to refugees as “God’s idea” and an act of obedience to the Bible—I heard Dr. Robert Jeffress say “It is impossible to defeat an enemy you are unwilling to identify.” And almost all of this, at least in my circle, is coming from those who call themselves followers of Christ who will be identified as His disciples by their love.

And I just don’t get it. I’m disgusted with Christians. At the same time, I’ve never been more eager to follow the example of the Jesus I read about in scripture. For my entire life, the gospel has been believed by Christians to be worth dying for. Jim Elliot was honored as a hero of the faith, best known for the words, “He is no fool who gives what he cannot keep to gain that which he cannot lose.” Christians have always offered prayer for countries whose borders were closed to them, and even found ways to serve there in spite of such restrictions—there are so many who have committed to take any road at any cost for the advancement of the gospel. To die making known the name of Christ—there could be no greater honor.

Suddenly, the ones they have prayed for and gone to great lengths to reach are knocking at the door. Christians don’t have to go anywhere; they need not leave their jobs and uproot their families and learn a language. They need not write monthly newsletters and sell all of their possessions and raise support. The very ones they struggled to approach are asking to come to them—and they are met with a resounding “No,” because Christians are afraid of dying. Let us pretend that refugees aren’t fleeing the same terror we fear, and let us say for a moment that these fears about their presence in our nation are fully justified. Will you only die to follow Christ and make Him known if it’s on your terms? My response to Dr. Robert Jeffress is this: It is impossible to reach a mission field you are unwilling to identify.

I do not know if there is a God who loves us. I do not know if there’s a Savior who died for me or if I will ever have another moment of consciousness after my death. But in the words of Avalon from their song “Orphans of God,” if such a thing as grace exists, grace was made for lives like this. Grace that tells us to love the stranger—because we were once strangers. Grace that helps us find the face of Jesus in “the least of these.” Grace that explains what pure and undefiled religion is (hint: it has nothing to do with the Republican party or Starbucks coffee cups or boycotting every company that supports gay marriage and Planned Parenthood). Grace that gave us the example of Christ; grace that gave us Ephesians 2. Have we forgotten?

11-13 “It was only yesterday that you outsiders to God’s ways had no idea of any of this, didn’t know the first thing about the way God works, hadn’t the faintest idea of Christ. You knew nothing of that rich history of God’s covenants and promises in Israel, hadn’t a clue about what God was doing in the world at large. Now because of Christ—dying that death, shedding that blood—you who were once out of it altogether are in on everything.- from Ephesians 2, the Message

Regardless of what we believe about Christ, we know as humans what is right. In this case, following Christ or following our consciences to love our fellow man lead us to the same conclusion—we must let them in. If the worst fears somehow become a reality and my life ends as a result…let it be. Some things are worth dying for. Jesus thought we were when we were strangers, as the story goes.

My ultimate prayer tonight is not for the security of our borders or the salvation of Muslims or the domination of one political party over another. My prayer tonight is for those who follow Christ—for an undivided heart, a new spirit, and a heart of flesh instead of stone—that through their obedience there may truly be no orphans of God.

Come ye unwanted, and find affection

Come all ye weary, Come and lay down your head

Come ye unworthy, you are my brother

If such a thing as grace exists, then grace was made for lives like this.

-Avalon, “Orphans of God”

 

 

 

A Letter to my Daughter

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My last post was on “being well.” The lapse of time between then and now is because I have been. I’m finished with all required clinical hours for medical school and currently at the beginning of a required vacation time for interview season. This winter, I will continue doing rotations simply for further education before my third daughter is born. Until then, I’m just a wife and mom who occasionally travels for an interview, and I am well. I am reading and writing a lot–you just haven’t seen most of it here. I’m approaching a more contemplative time of year for me as daylight hours become fewer and the air chills, and I have a feeling you’ll find me here more often. After all, I’m spending my days with a great source of inspiration–my husband and children.

One of those children turned two this weekend. Today marks two years from the day that she become very ill, and I feared for her life–it’s so hard to believe when I look at her now. She is unbridled joy in human form. She is the comic relief to her sister’s intensity. Time spent with her gives my heart rest, but never my body. I wrote a letter to her one year ago on her birthday (you’ll find it below), and I don’t really have much to add to it this year, except to say that this year with her brought me even more joy than her first.

A few details about her NICU stay remain seared in my mind. One is watching her nurses perform “neuro checks,” which included assessing her response to pain. There wasn’t one for a time. As a parent, it seems natural to feel relief when your child doesn’t wince and cry in response to a painful stimulus. As someone with medical knowledge, it is terrifying. I remember crying tears of joy the first time she pulled her ankle back in response to the discomfort of a blood draw–she was coming back to me.

My journey with faith has been painful…but pain usually has a purpose. Sometimes it is to warn us of danger or pathology. At other times, pain can be a comforting reminder that we are still alive enough to feel. And–as in labor and childbirth, which are only 14 or so weeks away for me–pain is sometimes necessary to bring forth something completely new and miraculous. Then comes the different, less intense but longer-lasting pain of adjusting to the newness and grafting it into your life. I think there are times when the purpose of pain does not justify its intensity, and in those times I am thankful for that there are limits to our lives on earth.

My heart still feels pain on this journey, and I’m not sure what kind of pain it is or what stage of the journey I’m in. I am only sure that the pain has a purpose, and my precious daughter’s life reminds me of that.

Dear EK,

We’ve been waiting to celebrate your first birthday for so much longer than a year. I remember when I discovered that you existed. I cried, and they weren’t tears of joy. They were tears of fear and of grief over losing you. Two years of hope and then loss and then more hope and more loss had taught me that sorrow follows swiftly behind joy–so I skipped the joy altogether and went straight to grief over a loss that hadn’t even happened yet. “The numbers” didn’t look good at first, and they told me to wait through the weekend and check again Monday. I don’t remember anything about that weekend except praying for you and wanting you. Monday came, and the numbers were perfect.

A six week ultrasound showed us a beating heart, and I was moved from the care of my infertility specialist to the regular clinic. Another ultrasound at 9 weeks showed a growing child–reassuring, because my only symptom of pregnancy was a daily nosebleed. At 16 weeks, we discovered that your daddy was outnumbered 3:1, and that EM would have a sister. From that point on, you had a name. From that point on, EK, I allowed myself to believe that this day would come.

We still had a long way to go, but the rest of the pregnancy was uneventful. I only knew you were there because of your movements, 35 extra pounds of weight (twice what I gained with your sister–I craved oranges with her and hot dogs with you), and the daily nosebleeds. One year ago yesterday, we decorated the Christmas tree, not knowing that it was my final act of “nesting.” I went into labor 2 hours later and it continued with perfect steadiness until you were born 13 hours after it started–at exactly midnight on November 7th. You weren’t even a minute late to your birthday. You were 7 lbs, 4 oz and 19.25 in long, born at exactly 38 weeks. When they held you up to let me see you for the first time, your eyes were wide open–and they stayed that way all night long. I had declined all forms of pain medication during labor so I could have a more alert baby for early nursing–by morning, I questioned the wisdom of that.

Your sister met you later on that day. EK, she was enthralled with you. She still is. She stayed home sick from school this week, and you went. I found her in bed snuggled up with your stacking cups yesterday morning. “I miss EK,” she said, “and these remind me of her. They’re her favorite things.” I know you feel the same way about her, because of how you squeal and smile when she comes into your room with me every morning. May it always be so.

Over the next day we had visitors and vitals checks and videos about not shaking the baby we had been wanting for two and a half years. And then they set us free as a family of four, and we went home.

And then you got sick. I went from feeling relief that you were a “good” baby to feeling paralyzing fear that you were “too good.” No healthy breast-fed baby sleeps 12 hours straight on her third night of life. An ER visit turned into a week in the NICU, and for the first half of it, we didn’t know if there would be a celebration of your first week of life, let alone your first year. I lost all sense of time during that week. It could have been hours; it could have been years. I don’t remember eating a single meal other than crackers and cheese in the parents’ lounge–although I’m certain I actually did. You wouldn’t even respond to pain for days. The day you finally did is the day they said the words I’ll never forget: “She will pull through. You’ll bring her home.”

And you did pull through. And we did bring you home. And you continued to be “too good”–but with time, my nerves calmed down, and it brought me joy instead of fear. There have been mornings when your unbridled enthusiasm over seeing me has brought me to tears. It would be enough for you to just be alive, but you are so much more than that. That smile, that laugh, those squinty eyes, those out-of-control squeals when you see someone you love. The way you patiently sit while I clip all twenty nails. The way you smile and wave when I drop you off at daycare, as if you’re the one reassuring me that it will all be okay, and that I will be back soon. All of these things compel me to adore you. All of these things go so far beyond what I require of you–which is simply that your heart beats, that your skin is warm, that your body grows.

One of my favorite things about you is that you’re not in a hurry. You didn’t sit until 8 months old. You didn’t crawl until 2 weeks ago. You have still never rolled over, although now I suspect that your body type prevents it. You eat and eat and eat, sometimes half an hour after the rest of us have finished, even after the meal has been cleaned up. You nap a total of 6 hours every weekend day when we have you at home. You enjoy life more than anyone I’ve ever known.

There’s one thing you did too fast–you turned one year old today. I wasn’t ready for that. But isn’t it what I wanted? Didn’t I pray next to the isolette of the most beautiful baby in the NICU, begging your Creator for a first birthday? And here we are. And although I wish I could slow down your growth, I am so thankful that you are healthy and growing. I am so thankful that we now celebrate every year that passes, instead of every breath you take. And although I wish I could keep you from all pain, I’m so thankful that you are alive enough to feel bonked heads and bug bites–and that you are no longer familiar with deeper pain.

We finally made it to a year–a milestone we’ve anticipated for your first twelve months of life, for the pregnancy preceding them, and for the two years prior to that when we waited in hope for you. A milestone we feared we might never see during the days when your number of respirations mattered so much more than your number of days. For so long we waited for this baby who is never in a hurry–yet somehow you still reached one year too quickly.

And one year has never meant more to me. You are worth it all–worth thousands of dollars in hospital bills, worth anxiety and tears, worth delaying my graduation by a full year for more time with you in the early days. You were worth the wait.

So now we move on to year two. Some days the time will pass quickly, and some days I’ll feel like we’ll be stuck in this stage of life forever. So on the days when we’re stuck, I’ll take the time to know you, to memorize you at that age. And on the days when time laps me over and over, I’ll be thankful that you are growing as a healthy child should, and that my NICU prayers are being answered–prayers for the celebration of years instead of breaths.

Happy birthday, EK. You were worth everything it took to get us to one year. I pray for many more years of the joy of knowing you. Whether they come quickly or slowly, with the peace of easy days or with the triumph of overcoming great difficulty and with pain that reminds us that we are alive–my prayer is simply that they come.

[Image courtesy of Wikimedia Commons.]

On being well

  

The doctor had walked out of the room to make a phone call. He was irritated because the middle-aged patient with Parkinson’s Disease had come from the nursing home without a medication list. On top of that, the patient had been given his morning meds, which were supposed to have been withheld for the sake of his neurological exam that morning—our goal was to assess the patient’s function off all meds, then administer them and reassess to determine their efficacy in relieving symptoms. I knew that the actual visit time would be limited because of the doctor’s time on the phone with the nursing home staff, and I felt bad that the patient was being shorted for reasons he couldn’t control. Up to this point, he had been limited in vocal interaction, giving only one or two-word answers to the doctor’s and nurse’s questions. I engaged him in conversation, listening to the content of his response and observing the evidence of the physical manifestations of his disease as he sat and spoke. 

I asked which facility he lives in and was relieved to recognize the name of it as one of the better ones. I asked if he was happy with his care there, and he said he was—that it was much better than living in his disabled sister’s bug-infested home where no one could prepare meals for him or help him up when he fell. She was his only living family member. I noticed a mild resting tremor in his right hand as he spoke in a weak voice, as well as writhing movements of his entire body, most pronounced in his legs. The tremor and soft speech were from his disease itself, and the writhing movements, termed “dyskinesias,” were from the treatment. Controlling the tremor and the “frozen” spells of Parkinson’s Disease sometimes means moving too far in the other direction. I asked him what bothered him most—his tremor and freezing spells without his medication or his dyskinesias with them. He, as most of these patients do, confirmed that the tremor and freezing were the most frustrating symptoms. The dyskinesias didn’t really bother him, even though the instability they caused required him to use a walker or wheelchair. Many patients would rather move too much with uncontrollable writhing than be statues or limited by a severe tremor. 

I asked him what he did for work before his diagnosis. He had worked in construction until the loss of dexterity in his hands made the work impossible. “I’m still an artist, though,” he said, continuing with a weak voice but now also with a light in his eyes and the hint of a smile—a rare sight in a patient with Parkinson’s. He proudly described his latest paintings, which are on display in his facility. “Sometimes they take an unexpected twist when my hand moves the wrong way, but I just roll with it, you know?” He felt that his disease had made him more creative as he incorporated unplanned strokes into the design—more of an artist than he had been before. 

I was already so moved by getting to know this patient and by his outlook on a life that many would say had been wrecked by disease. Nothing could have prepared me for what he did next.

I crossed the room and sat next to him at the doctor’s desk. I sensed that I had gained his trust and felt the freedom to continue with aspects of the exam that the doctor would not likely have time for. I passed over a piece of paper and a pen, asking him to draw spirals for me. He complied, and his drawings were characterized by the classic sinusoidal wave of a Parkinson’s tremor. I then asked him if he would write a sentence for me, intending to speak the sentence aloud and use his written version as a test of memory and an assessment of his handwriting. Before I had time to speak the sentence, I noticed that he had already begun to write. I remained silent, more curious about the sentence he already had in mind than I was about his ability to recall the words I was planning to assign. He finished his short sentence and passed the paper to me. On it were four tiny words:

“I will be well.”

Was it hope? Was it a prediction? I don’t think it was either. I think it was a decision—a choice he had made. It was too much for me, being halfway through a pregnancy that has affected my emotions significantly more than it has affected my body. I hoped he couldn’t see the tears that threatened to betray my heart. It’s not that I felt sorry for him, although his story could provoke tears for that reason. I was simply overwhelmed by the privilege of being in the presence of greatness. It doesn’t seem fair that I will soon be paid to learn more from some of my patients about what it means to be human than they will ever learn from me about a disease process they can google at home. 

This artist had mastered the art of living—and his life is a masterpiece I could stand in front of for hours. When I examine my own life, I am far less impressed. What have I done with the unexpected strokes—the ones that smeared across the images I had painted of God and of my marriage? Why do I now stand frozen in front of the canvas, thinking and feeling and weeping, but unable to express or create—even unable to write more often than once in a month?

Do I have hope—can I predict that things will drastically change? Honestly, I sometimes can’t see it. It’s hard to imagine that my faith and my marriage (even as love-filled as it is) can ever be what I thought they might be. But there is an art to living, and what I have failed to deeply, creatively explore is the possibility that there may be something magnificent that comes from the aspects of my life that did not go as expected. What this patient reminded me of is that whether I incorporate aberrant brushstrokes into a masterpiece or scrap the entire canvas is completely up to me. 

I choose to be well—more later on what that means for me.

Image: Vilhelm Hammershøi, Interior with the Artist’s Easel, 1910.jpg, Wikimedia commons, public domain

The Act

circus elephant

I went to a circus two weeks ago with my brother and sister-in-law. I’m staying with them while I do a rotation in a city two hours away from home, and I felt that I owed them at least part of my day off in exchange for their hospitality. They felt the need to entertain me, so to the circus we went—“The greatest show on earth.” I hated it. Of course I was gracious and thanked my siblings for the invitation—they had no idea how I felt. Ironically, by not expressing my true feelings, I was acting out the very thing I despised about the circus.

What kind of person hates the circus? It was the clowns that haunted me the most. Yes, I know—clowns haunt many people. I was terrified of them as a child after accidentally walking into the living room one night while my older brothers watched Poltergeist. I’ve outgrown that fear, and these clowns struck me for a different reason. From the second row of the audience, I could see past their makeup. From the second row, I could see the pained expressions behind painted-on smiles. Most of the clowns seemed born to perform. Their talent was remarkable, and they stayed in full character—their true expressions matching the spirit of the circus. The few who did not were the ones I couldn’t tear my eyes from.

Were they bored? Exhausted? Or worse—were they empty? Was this not the life they envisioned? Why do they do this if it’s not who they are? Are they stuck?

My discomfort was not due to an inability to relate. Rather, it was because what I saw before me was all too familiar. So much of my life has been spent as a circus clown—masking my heart with makeup. And my thoughts turned to my daughter, who would really start learning “the act” in two weeks as a kindergartener.

I saw the first glimpses of it today as I took my 5-year-old to her kindergarten classroom for her first day of school. Of course, I contributed to the act. I bought her the new backpack and lunchbox and all the new clothes. I packed her lunch and put a note in her lunchbox, fed her a healthy breakfast, and walked her into her classroom with a gift for her teacher in hand. I felt like a fraud—this is not the mother I am, although it’s the mother I would love to be. The fact is, I left the city right after I dropped her off, and I won’t pack her lunch or take her to school again until November. I won’t even live at home again until October. Our little family that went through all the motions so perfectly today is hurting.

Even my daughter is learning the act. When it was time for her to take her seat, she turned around suddenly and hugged me tightly. When she finally pulled away, I saw big tears in both of her eyes. I knelt down to her level. “Are you going to cry?” I asked. “No, I’m fine,” she said, avoiding my gaze. “I just got something in my eye.” She quickly found her seat and began to color. I was astonished at her façade. She is our emotional child and had never fought tears before. Crying was suddenly off-limits in her mind.

Her teacher introduced her to the morning activity and pointed out the location of the books so she could “practice reading” when she finished it. From another table, a little girl haughtily informed us, “I already know how to read,” and proceeded to name off several other skills she has already mastered. I jokingly muttered the word “gunner” under my breath to my husband—a term frequently used to describe medical students who are overly competitive and ambitious, and might even seek recognition from superiors at the expense of classmates or colleagues. I actually saw myself in that little girl—although failure over the years has humbled me significantly. Her mother later told us that she doesn’t know how to read—she has simply memorized parts of books they have read to her. This child was already part of the act—exerting dominance, seeking praise. My daughter actually does know how to read and said nothing to her classmate in defense of her own skills—keeping peace like her father might do.

I am only just now learning as an adult that I’m better off without the act. This blog and my support network here have helped immensely with that. So why have I been silent for almost two months? I’ll be honest—after a time of intense encouragement that came with my brother’s recovery and my family’s healing, the reality of normal life hit hard:

In response to my own journey, I heard hatred from believers louder than I heard love. Many of you were supportive and encouraging, but it takes ten times as much of that to overcome one hate-filled comment. Even still, thank you for being there.

After my brother became more and more himself again, I realized that he’s still the same person who didn’t acknowledge my marriage or the birth of my children. Yes, we talk on the phone weekly now—something we never did before. No, I don’t enjoy it. I’m still not sure he loves me at all, and the connection we had started to build before he became sick has dwindled to nothing. Still, I persist. This will not fail for lack of effort.

And—this is the hardest thing to write—after all of my words about love winning, I realized last month for the first time how my heart is prone to wander. No, I did not have an Ashley Madison account and never would. Attacks on my heart are less obvious than that—and thus perhaps more dangerous. They are unexpected, not sought. They come in the subtle form of gentle words and thoughtful questions and humble praise of my beauty and confidence and competence. For the first time in nine years, I had strong feelings for someone who wasn’t my husband. We worked together for a month, and nothing happened between us beyond his expression of feelings for me (on my last day of the rotation) that he insisted he would never act on and my confession that I shared them—then the mutual recommitment to protect our hearts for our spouses. He was only in my area of work for a brief time, and we will not work together again. I told my husband everything that same day, and his graciousness to me was overwhelming. My feelings had been present for weeks, but I had refused to acknowledge them until my colleague put them into words—I’m glad he did, because it shook me awake. I finally, finally understand why some people are so cautious with things like this. I have finally seen the danger of what my heart is capable of and been terrified enough to draw the line a mile from the edge of the cliff. The danger will remain and perhaps increase as my confidence and competence grow—but I will be prepared.

In the mean time, I am deeply feeling the distance from my husband while I work here and grieving the way my heart failed him. He is the one who has been there for nine years. He is the one who has done most of the work in raising our two daughters. He is the father of the child that draws flesh inside of me right now. He is the one who has loved me through every blog post I have written and walked my heart through the season that surrounded each one. He knew me—every flaw, every failure—and loved me anyway. He made me into the woman that other men fall in love with. How is that fair? He took me out on two date nights in a row this weekend, and the conversation was precious and healing. Russell, my heart is yours only for the rest of our lives.

So, readers, how is this for wiping off the painted face and ending the act? It’s probably more than you ever wanted to know in explanation for my silence. But I need you. With tears pouring down my face—tears that I will not begin to fight—please understand that I need you. My silence is because of a stunned spirit. The magic of June faded into the reality of July. Many believers rank highly on the list of the meanest people I know. My brother came back from a brush with death, and he is still a narcissistic jerk. And my heart that was so moved by love is capable of the worst imaginable things. I…am…broken. And I feel like God is silent. This is why I haven’t written. I’ve been afraid of what I would write. Afraid of what you would write in response. I am a master of the act, but I’m so sick of performing it.

So this is the kind of person who hates the circus. A disenchanted member of it. And as I dropped my daughter off at kindergarten, I wanted something better for her. I don’t ever want her to wear a mask that fails to synchronize with the status of her heart. I want her to be more concerned about her heart than about her backpack or her clothes or any aspect of her appearance. I want her to be humble and honest about her talents and abilities, but I also want her to be strong enough to defend them. I never want her to hold back tears when she needs others to see them and walk beside her the way I need you right now. I want her to feel the freedom to not be anonymous the way I am—to be wildly who she is instead of captive like an elephant that can stand on its head or balance on a stool. If my kindergartener can walk through the coming years without succumbing to the rigidity of the act—something I didn’t learn until adulthood—she could be so much more thrilling to watch than the greatest show on earth.

#LoveWins, #GodWins: From a Christian who celebrates with you

rainbow cross

#LoveWins. You’ve seen the hashtag everywhere lately, and for such a joyous reason. With my heart returning to Jesus, where do I stand on this issue? I’ve read one too many blog posts titled something like “Open Letter to the Homosexual Community from a Christian.” They all start off the same way—they suck you in with an apology for how Christians have wronged gay people. It’s true…we do owe gay people an apology. The problem with these blog posts is that they’re apologizing for the wrong thing. They apologize for hating gay people instead of just hating their “sin,” and they try to cultivate comaraderie by saying they’re just like them with sins of their own. What they fail to understand is that gay people would probably rather be hated than told, “I love you, but…” What they fail to understand is that comparing another person’s sexuality to their own lust, pride, greed, anger—is not loving them at all.

I’ve seen other posts reprimanding so-called Christians who put the rainbow filter over their facebook profile pictures or Christians who have congratulated their gay loved ones on social media. They quote Romans 1:32 and tell these believers that they are succumbing to worldly pressures—or that they are even following a road to apostasy. #GodWins is their hashtag of choice.

So how will my post be different? Will I love the “sinner” and hate the “sin”? Will I warn fellow Christians who might be blinded by the schemes of the devil? Will I be for gay marriage, or will I be for God?

I will be for both. I’m sure such a blog post is out there, but I haven’t seen it—I don’t have friends like me on facebook, so these kinds of posts aren’t shared. I will love gay people the same way I love people who aren’t gay, and I won’t call their sexual orientation a sin. I will warn fellow Christians of losing sight of God, but not in the way you think.

Love brought me back. I just spent fifty-four minutes on the phone with a brother I hadn’t spoken to since childhood until the past few weeks. At the end of the conversation, he said “I’m sorry I’ve told you that I love you no less than fifteen times in the past hour—I guess I’m just making up for lost time.” Oh, my heart has ached for that. Love softened my heart and my brothers’ hearts toward me. Love came on a Wednesday three weeks ago and changed everything. Love came in the least expected situation to the least deserving people. I’m not satisfied with neurochemistry as an explanation for it, although I’ve tried to convince myself that I was for a while.

And that love is really what my faith is all about—it’s the thesis of scripture. Love came down in the most unexpected way so we could see just how far it could reach. It came in the least expected situation to the least deserving people—and yet, we forget that God IS love. We dilute the thesis of scripture with our own interpretations of the details, even when our interpretations contradict the love of God. I treasure so much of scripture—but it does not have authority in my life. It is useful and inspired, but there is more to my God than ancient words and cultures, and his love is bigger than anything human writers with biases are capable of. If you’re not a believer, you disagree. If you are a believer, you probably disagree. My world is still lonely.

When I see Christians rage against the rainbow with the words #GodWins, I see a lot of noisy gongs and clanging cymbals. I see a lot of claims to understanding and knowledge and faith, but I don’t see love. I see a lot of nothing. But when I see the celebration of an elderly gay couple who have spent a lifetime together, I see love that is patient and kind, not arrogant or rude. I see love that does not insist on its own way and is not irritable or resentful—love that rejoices with the truth. I see love that hopes. I see love that endures. Love is not defined by its object, but by these qualities.

We always stop reading 1 Corinthians 13 at “Love never fails.” But there’s more. Prophecies and knowledge will pass away. Tongues will cease. We only know in part, like children. In other words, we might be wrong. Someday we will see more clearly—and I think we’ll find that love indeed wins. These words are not a threat—they are the very foundation that my faith rests upon.

What if we stopped filtering the world around us through our own interpretations of scripture? What if we filtered it instead through a love that knows no boundaries? If God is love, would we be that far off from truth? If God is love, then #LoveWins and #GodWins are one and the same.

“This is my commandment, that you love one another as I have loved you.” John 15:12

It is so ordered.

[image © Majivecka | Dreamstime.com – Vector Silhouette Of A Cross. Photo]

When Dead Things Live Again

heart monitor

“Happy families are all alike; every unhappy family is unhappy in its own way.” – Tolstoy, Anna Karenina

I probably need the debriefing more than you need the update. Many things were laid to rest last week, but my brother was not one of them. I did say goodbye, but not for forever. The cause of my brother’s coma was reversible—due to toxins that built up in his body as a consequence of liver disease. His ammonia level was higher than his doctor had ever seen in decades of practice. His coma was deeper and longer than the ones that we realistically hope people can wake from, and his was also in the setting of septic shock, massive blood loss from intestinal veins, and acute respiratory failure from a life-threatening infection. We were called to say goodbye.

So we gathered there together—siblings and half-siblings, parents and step-parents, spouses and exes. Of the ten other members of my brother’s immediate family present, I only had three of their phone numbers in my cell phone—my sister and my parents. Of the eleven of us crying around his bed, not one of us knew about his chronic disease before that dreaded phone call. Happy families are all alike—but my family is like no other.

I’ll explain the relationships as well as I can. My father was first married to my brothers’ mother—together they had three sons. After their divorce, my father married a fellow drug addict, and they would literally lock my brothers out of the house to get high. That marriage dissolved quickly, and my father married my mother (who had her own son from a previous marriage)—and together they had me and my sister. Meanwhile, my father’s first wife remarried (and later divorced) a man who was a good father to her sons. For whatever reason, my dad had a significant share of the custody of his sons, despite his history of addiction. They were with us often when I was younger, and we were often unsupervised—the youngest is ten years older than I am.

My brothers knew pain that I did not know, and it affected them; thus, it affected me. They were hurt deeply, and then they hurt me—one more than the other two. What must have happened to them that they would hate their father’s daughter? What evil had the youngest known that he would cause me harm and call it love? What was wrong with me if I preferred the pain to the silence? Not one of them came to my wedding or even RSVP’d with regrets. Not one of them called to congratulate me when I gave birth to their first niece. Not one birthday phone call or one “I love you” from any of these three—my whole life long. I can count on my fingers the number of times I’ve seen them in the past eighteen years, and I’ve been trying to replace them the entire time. Yet here we were all together in a room with our father—and our mothers, and their ex-step-father. Their wives were there, too. My brother who was facing death had recently divorced—so his ex-wife joined us as well. They never had children. Halves, steps, and exes—unhappy in our own way.

But all unhappy together, for the first time ever.

When we arrived at our hotel on the west coast, it was too early to check in. We sat with our bags at a table, waiting for the youngest of my dad’s sons to arrive with his mother. They had been at my ill brother’s hotel trying to gather his belongings and trace his steps leading up to hospitalization. They were a block and a half away, but they struggled to navigate the unfamiliar city. What should have been a five-minute journey to us took more than an hour, despite texted locations and dropped pins and exasperated phone calls. When my brother and my dad’s first wife finally arrived, it was easy to see why. They were broken, with red faces and swollen eyes—even walking was too much to ask. I was moved by their vulnerability, and it seemed natural to embrace a brother who betrayed my trust many years ago and the woman my father was once married to. That day, we were all the same.

We discussed what we knew so far. My brother had flown to this city two days before on business and checked into the hospital, short of breath but stable. The next morning, he was found in his room in a coma and struggling to breathe—and he was emergently intubated. He had stayed at this hospital prior to his divorce and given his wife’s number as an emergency contact—so the hospital called her when they found him obtunded, and she called the family. The youngest of my dad’s three sons and their mother arrived first and went straight to the hospital. In my brother’s belongings bag, they found a hotel key and went straight to the hotel to find answers about what events led up to my brother’s decline in health. They went to the front desk and gave my brother’s name, asking if the receptionists knew anything. They were met with shocked expressions—“That guest checked in at this desk, then disappeared two days ago while we delivered his bags to his room at his request. He left his wallet on the lobby floor, and an Uber driver returned his phone hours later. We’ve been worried about him ever since. He looked terribly ill.”

The hospital had given us more details—he had been hospitalized there before and was told he had a cirrhotic liver four months before. He had actually quit drinking nine months before on his own, worried about the fact that he couldn’t write without a drink and refusing to be dependent on anything other than his own genius. But the damage had been done. He would need a new liver, and until he got it, he would have to deal with the complications of the one he destroyed.

We had some answers as we sat around a table, a most unlikely family—but we had many more questions. Does he have a living will? Life insurance? Health insurance? Who has his dog? When are his bills due? Should we call his employer?

Other questions were specifically for me. J, is this survivable? What will he be like if he wakes up? Can a bad liver really cause a coma? Potentially, I don’t know, and Yes. My answers were worthless, but they were enough for my brother’s mother. “J, will you be medical power of attorney? He didn’t name anyone, and I don’t trust myself to know what to do.” I wanted to argue since she was his mother, but I knew it made sense. Although I couldn’t officially hold “Medical Power of Attorney” without my brother having named me prior to becoming incapacitated, I could make medical decisions on his behalf if his parents delegated that responsibility to me. My brother’s providers could be more efficient if they communicated with me, allowing me to interpret their findings and decisions in words my family could understand. “Yes,” I finally answered. I hoped that if the time came for compassionate withdrawal of life support, I could help her understand and agree to it.

I did not wish to advertise my medical knowledge. I know how threatened a medical team can feel here in Texas when the sibling from California suddenly flies in to run things. We literally joke about that at our hospital—“the sibling from California.” And here I was in California—the sibling from Texas who flew in as medical decision-maker. At least they don’t have to know that I’m in the medical field and wonder if I’m there to suggest better ways to do things. My subtlety lasted five seconds. “Who’s our medical decision-maker?” the neurologist asked when we arrived at the hospital room. “I am,” I said. “I’m his sister.” “She’s a doctor,” added my brother’s mother.

Cover blown.

“I’m a fourth year medical student,” I clarified. “How is my brother?” He took me into the room alone, and I was glad we had caught him while he was there. “I can spin this in a hopeful way—because we can always find reason to hope—or I can spin this in a realistic way. Which do you prefer?” “I want your expert opinion,” I said—understanding the implication that the realistic interpretation was hopeless. “You’re speaking more like a medical student than a sister,” he answered. I shrugged. I hadn’t ever been much of a sister. He examined my brother and then explained his condition in many words, likely dumbed down to a fourth year medical student’s level. I understood every one of them, but one sentence stood out. “I don’t think he’ll ever wake up.” He elaborated, “In fact, with this requirement of pressor support, I’m not sure he’ll make it until the rest of the family can arrive to discuss withdrawing care. If anyone wants to see him alive, they need to get here today.”

I was honest with the family about what the doctor had said, and I made a phone call to another brother I hadn’t spoken to since my childhood. Suddenly everyone was willing to pick up the phone. We spoke for thirty minutes, and he booked his flight, understanding the seriousness of his brother’s condition. When I returned to the room, my dad and his ex-wife were collapsed into chairs that had been pulled up to the bedside. My dad looked pale and sat quietly. My brothers’ mother looked frantic, and she rocked back and forth saying “I don’t know what to do” over and over again. These hours were the worst, and I spent most of them answering questions. What are pressors? What is anoxic brain injury? What does it mean to have high ammonia levels? I was thankful for the distraction.

Late in the day, another doctor came in with a different perspective. She wasn’t certain that my brother had gone long enough without oxygen to his brain to cause such a profound coma. She had never seen an ammonia level this high, but she had seen plenty of patients with liver disease wake from comas this deep once the toxins were removed from the body with medication. She wanted to give him more time before she lost hope. “I think this is reversible,” she offered, “so don’t give up yet.”

Hours and days passed. I kept the extended family updated via text message. I translated the doctors’ and nurses’ reports to the immediate family in the hospital room and waiting room several times each day. I asked questions of the doctors that no one in the family knew to ask. My purpose was not to interfere with my brother’s excellent medical care, but to explain his condition and the care he received to the people who loved him the most. The pathology behind his condition was complicated and multifactorial, and I would have been completely lost four years ago. My brother had never given me the opportunity to love him. He had never needed anything from me, until now. I felt useful as I served his family. My family. Our family.

The ammonia level eventually dropped. After over 48 hours of deep coma without any medically-induced sedation, my brother began moving enough to require sedatives so that he wouldn’t remove his breathing tube. In brief intervals of less sedation, he would sometimes even respond to commands. He opened his eyes; he squeezed my hand. We were hopeful. After 72 hours, his critical care doctor told me that she wanted to try to wake him up the following day and do a trial to see how he could do on his own if his ventilator settings were reduced to allow him to do the work of breathing. I couldn’t believe it—I had come to say goodbye, and to consent to removal of that ventilator support so my brother could die. Now they were talking about removing it so he could breathe on his own.

Later that afternoon, I was told that my brother was being transferred to a more specialized facility with a liver transplant center as soon as a bed became available. I asked if extubation (removing the breathing tube) would still be a possibility before transfer, and the nurse told me that it wouldn’t. “Your doctor is crazy—he won’t survive that,” he said. The afternoon and evening were also complicated by a GI bleed with an unidentifiable source, and I understood the reality that my brother could decompensate at any moment.

I decided to stay the night at the hospital in case the transfer happened in the middle of the night. I wanted to be there to offer any missing information at the new facility and meet the team. The rest of the family left at around 5:30 to get food and rest. At 8 pm, the food I had ordered arrived, and I ate it in the cafeteria while I called my husband. At just before nine, my youngest brother texted me to let me know that he and my other brother and their wives and mother were coming to say goodnight to my older brother. He wanted to see if I needed anything for my night at the hospital. I told him I was fine and that I would let him know if we were transferred overnight. Before they left the hospital, my brothers found me in the cafeteria. “You look tired,” the youngest said as he knelt in front of me and took my hand. “I love you so much. You’ve been amazing, and I don’t know what we’d do without you. Is there anything I can do for you?” he asked.

It would have been too much for me even at my peak of energy and health and rest. But that night I was too tired, too afraid, too vulnerable—I couldn’t hold myself together. “That’s all I need,” I said. “Just love me.” And I cried in my brother’s arms for the first time ever. His wife embraced me next, followed by my other brother. “I love you, little sister,” he said for the first time, “and I’m so glad you’re here.” More embraces and words of gratitude and love came from his wife and my brothers’ mother, and I laughed after they left about the fact that I had just told my dad’s ex-wife that I loved her—and meant it. This tragedy had brought my family together over shared grief, shared hope, shared fear, shared meals, and shared spaces. My first real experience of my brothers’ love gave me energy for a long night ahead.

It was indeed a long night. A bed opened up at the more specialized facility, so my brother had a room. “A bed opened up” is a euphemism for “Someone died,” and that harsh reality was never out of my mind throughout the transfer. I was glad I had stayed despite my parents’ insistence that I sleep and let the transfer happen without me if it was going to happen at all—it involved a great deal of paperwork, and the nurses told me they would have called me in anyway if I hadn’t been there. I signed my brother out at a little after 1 am and took an Uber to the hospital, hoping to beat the ambulance there.

I did beat the ambulance there by more than an hour, and I ended up making small talk with a bipolar woman in a manic episode—the only other person in the lobby at that hour. Anything to keep me awake. She didn’t seem to need sleep, and after she wandered around the lobby taking deep breaths and commenting about the oxygen level at various parts of the large room, I began to wonder if she was a locked unit escapee. My heart went out to her—she was broken and didn’t even know it…like so many of us.

Two hours after my arrival, I was able to see my brother. Nurses were asking for a medical history I couldn’t provide—he had lied about his health, and I knew very little. I did provide our family history and the course of his stay at the facility we came from. I did confirm that he had not traveled to West Africa in the past three weeks or had contact with anyone suspected or confirmed to have Ebola. They checked his hemoglobin, which showed that his bleeding had not progressed, and they told me to be back by 9:00 am to see the hepatologist. I crawled into bed at 4:15 after a text message to the family giving the details of our new location and telling them that I would be at the hospital by 9:00.

When I arrived the next morning, the hepatologist wasn’t there, but a respiratory therapist was. They disagreed with the nurse from the other hospital and were planning to attempt to remove my brother’s breathing tube. “We’ve been weaning his sedation and we’re starting a breathing trial, but no response yet,” she said, and then asked, “Who are you?” As I introduced myself to his nurse, my brother’s eyes flew open. He looked terrified, as if he knew that my presence meant that something had gone terribly wrong. I asked if he could hear me, and he nodded. I asked if he knew where he was, and he shook his head. I asked if he remembered getting on a plane on Monday, and he shook his head. I asked if he remembered planning a trip for work, and he nodded. We had a starting point, and from there I walked him through the events as we had pieced them together from the time he got off the plane until that moment, pausing often to check for his understanding. He was still intubated and unable to speak, but his face spoke volumes. I had never seen my brother cry before, but he cried that day. “Are you overwhelmed?” I asked. He nodded. “Do you want me to stop talking?” He shook his head. “Do you want to know more about what made you sick?” He nodded. I told him everything, in words that he could understand—and I knew that he would not likely remember anything I told him in the shadows of sedation. “We all know about your liver now—you don’t have to hide it anymore. We love you, and we’re going to help you get through this.” He shook his head and cried again. I ran through the list of who was with us in the city—all of the immediate family members except my sister, who had left a few days before, as well as his ex-wife and his best friend. I asked if he wanted to see one of our brothers, and he nodded. I texted him, realizing that no one else in the family downstairs even knew he was awake and breathing well with his ventilator all but turned off. I knew it wasn’t time yet for his mother to see him, but he was closer to his brother than to anyone else, and I wanted him to have that support in the moments to come. My brothers were reunited, with tears mingling on tightly clasped hands. As brothers do, they quickly overcame their tears with humor. “We’re glad to have you back, Mr. President,” my healthy brother said. “The country has been waiting for you.” I played along when I saw my brother’s smile—“Your children would like to see you. Should we bring them in?” His tubed smile broadened at our teasing. He was back.

The respiratory therapist asked us to step out for a moment—they needed to move some equipment around the room in preparation for extubation, and they needed room around the bed to do it. As we walked out of my brother’s room and into the hallway, my other brother pulled me to his chest and sobbed. After what seemed like minutes, he finally said “He smiled, J.”

The respiratory therapist invited us back into the room. “We’re ready to extubate,” she said—“just waiting on the doctor’s orders.” I asked my brother if he wanted his mom to come in, and he shook his head. I didn’t dare ask if he wanted our dad. I moved on and asked if he wanted his best friend, and he nodded. His friend joined us, and the three of us were at bedside in awe of my brother’s smile when the extubation orders came in and a team of nurses filled the room. We stepped out, and the curtain was drawn—a two-inch gap left in the center.

This was the moment we had come for. On Tuesday, we were told that we might soon need to make a decision as a family about when to remove my brother’s breathing tube—so he could die. Just days before, he hadn’t had brainstem reflexes—much less a smile. Extubation was supposed to be the ultimate defeat—and here it was the greatest victory I’ve ever been a part of.

I watched through my gap in the curtain through flooding eyes. I had seen this done too many times to count—and it had never made me weep. Within seconds, the tube was out; he was suctioned; he was cleaned. He was fine. I collapsed into my brother’s arms in the hallway, and he wept too. Our brother was alive and communicating. Our family was alive and communicating.

We were invited back into the room, now cleared except one nurse. My brother’s first words were profound: “That sucked.” His second words shocked me. “Mom and Dad.” Surely not. “Your step-dad?” I asked. He shook his head. “Mom and Dad.” I still couldn’t believe it. “Your mom and our dad?” I specified, not wanting to bring his worst enemy into the room uninvited. He nodded. “Mom and Dad. Have they been good?”

We assured him that they had been perfect, and it wasn’t a lie at all. My dad and his ex-wife had supported each other gracefully during the deepest heartache either of them had ever known. The whole family had. For this week, my brothers had been what brothers should be, and their wives had been like sisters. For this week, my mother had taken it upon herself to serve and uplift her husband’s ex-wife—she could imagine the pain of losing a child, and she sought to lessen that pain for the least likely friend. My mom provided every meal for my brother’s mother, ordered every Uber ride, went on every errand for an incidental forgotten item. My mom even took her shopping for warmer clothes (she had barely packed at all, and what she packed was for Texas summers), kept her phone charged, and gave her a shoulder to cry on whenever she needed it. I have never loved my mother more. My brother’s mother also had the support of her second ex-husband, the step-dad who was deeply involved in my brothers’ lives. It seemed that they forgot they were divorced—they have both remained single for decades, and I caught them kissing one night after dinner. Even my brother’s ex-wife was included as part of the family. We all knew that a painful divorce probably left them with regrets and a need for closure. She knew him better than any of us after eighteen years of marriage—even though she still didn’t really know him. We honored her desire to be present and to have another chance to say goodbye to him after she thought she had lost that chance forever. She was not the ultimate enemy of the family anyway—my dad was. But you never would have guessed it. I watched my brothers seek out my dad time and time again during these dark days. I watched the embraces and confessions of love and the formulation of plans for the future. I watched walls crumble.

So yes, dear brother—they’ve been good. We’ve all been good.

My brother’s mom and our dad came up to see him—my other brother and I stood in the corner, arms linked. I watched my brother cry as he took our dad’s hand. “You look good, Dad,” he said hoarsely. “I love you.” His mom turned to my brother and me, shocked and ecstatic. She has always wanted her boys to have a relationship with their dad, but she told me later she hadn’t thought her son would even ask for his father. I could tell that my dad was overwhelmed—he is rarely a man of few words. “I love you too, son. I know everything, and I love you anyway.” My brother shut his eyes. “I’m a mess. I need you.” “I’m here,” my dad assured him.

He later asked for his step-father and our other brother. Then he needed rest, and he recommended an Italian restaurant for lunch. We went there while he slept, our appetites suddenly returning in full force. When we returned, he awoke and asked for both of my parents. “I haven’t let you be a big part of my past,” he began, “but you’ll be a part of my future.”

He saw his brothers again with their wives, and he finally asked for his ex-wife. When she returned from his bedside, she wore a content and relieved smile. “That went well,” she whispered to me later. “We have closure.”

That night, we had another large family dinner with our family of halves, steps, and exes. Before the margaritas even arrived, my brother nudged me and pointed across the table. My mother and his mother were taking a “selfie” together. Our dad and his step-dad took the cue and leaned in for their own selfie. Two women once married to the same man. Two men once married to the same woman. Friends, bound by their mutual love of one hurting person. One of my brothers popped his head into the camera field behind our dad and his step-dad. Next to my dad, and smiling. My brother kissed my cheek and whispered in my ear, “Did we just get our family back?”

Yes, we did—and that’s the miracle I’m stuck on. My brother was all but dead, and he came back to life. And my family was all but dead—and now it lives, too. Do you remember my sadness in my post about saying goodbye—do you remember the facebook message devoid of the words I longed to hear? All three of these brothers told me they loved me this week. All three made a promise to never walk out of my life again. I have spoken to at least one of them every day since I returned home, and every conversation ends with those precious words. All of my siblings are coming to my parents’ house in a few weekends, just to be a family for two nights. That hasn’t happened since I was too young to remember. Life stirs where I thought it was lost.

And my dormant heart stirs and awakens to life. What heartache have I known? Betrayal by one brother, and rejection by others. The lies of my father. The distance of a God I longed for. All of these…redeemed. I am struggling to find the words I need here. None of you could possibly understand what happened in my heart—it exceeds my talents and vocabulary, as well as your attention span. To put it simply, I found safety and comfort in the arms I once feared, and each of my brothers affirmed their love for me. The lies of my dying brother were no different than the lies of my father—none of us knew what he struggled with. When the truth came out, we all survived. My brother leaned on my dad, knowing that he’s been through shame like this before. I found peace in my prayers and in the prayers others offered, even in the darkest of moments. I felt that God was near and that this tragedy was for his glory and our good.

I know that there are medical explanations for my brother’s recovery. I know that there are psychological and sociological and hormonal explanations for what happened in my family. I know that this story does not need Jesus.

But I know that I do.

Maybe it’s because my personality type is ENFJ. Maybe it’s because this is a coping mechanism for a tragedy. Maybe Jesus is a lie. But my life has been marked by lies, and this feels different. Lies from my brothers, lies from my dad, lies to my family about where I stand in belief. I’ve known so many lies that I struggle to identify truth, and I will never claim with certainty to hold it. But if there’s one thing I do know, it’s this:

Me without Jesus is the greatest lie of all—and I’m finished with it.

Image:

Saying Goodbye

  
How do you pack for your brother’s death?

I stood in my closet last night looking at a row of hanging clothes and feeling as if the most trivial thing in the world was my wardrobe in coming hours and days. My husband started to give a practical answer to the question I had asked aloud, then thought better of it. “Maybe you didn’t actually want an answer,” he finally said. 

I received the call soon after I walked in the door at 6:20 yesterday evening. It’s one of those calls where you’ll remember exactly where you were sitting and what you were wearing when you received it. Brown sofa. Blue scrubs. No power to affect the situation. What did the call tell me? My brother is on the west coast in a coma and on life support after becoming critically ill during a work-related trip. We were first told that he wasn’t expected to live through the night, but we learned a few hours later that he would likely survive with full medical support long enough for family members to arrive to withdraw it. 

The hours since then have been a blur. A frenzied online search for tickets with my vision impaired by tear-filled eyes. A struggle to think about my own needs long enough to pack. Phone calls from family members wanting a medical opinion I feel ill-equipped to provide—I haven’t even seen my brother once this year, let alone since he became critically ill yesterday. A five-year-old who understands what’s happening and recounts every memory she has of her uncle, starting at age two and a half—and a picture of him that she creates with crayons, asking “Will you give it to him before he dies?” A text to my upper-level in the ICU I’m working in. His sensitive phone call in return—he has lost a little sister and a son. An hour-long drive to the city of my departure—an autopilot drive I have no memory of until I pulled into my best friend’s apartment complex. I only remember that because my car had black smoke pouring from the hood and smelled like burning rubber when I arrived—no time to deal with that now. We napped for a few hours before we left for the airport, and I write now from a plane that will take me to the city where my brother will die. 

Or perhaps it won’t. I’ve been trying to hold myself together. I made small talk with the friendly flight attendant who seemed unaware that people might travel for tragedy and not care to hear about how “crazy” her morning has been. I wasn’t offended—if anything, I was thankful for the distraction of her light-hearted way of speaking, and I didn’t let on that my heart is breaking…until the announcement came on over the loud-speaker 20 minutes into the flight. “Ladies and Gentlemen, you may have noticed that we have leveled out and are hovering over the departure city. We are experiencing an equipment malfunction and must return to the airport at this time. We fully anticipate a safe landing and will work to provide you with travel arrangements upon our arrival at the gate.”

A flight attendant noticed the stream of tears that poured down my face as if they had been building up pressure all morning. She rushed to reassure me, assuming that I was overwhelmed with fear. I was, but it was a different kind of fear. Would I get there in time? I explained where I was going and why, and that every minute counts. She assured me that agents would be available to assist me with travel plans as soon as we disembarked. I didn’t trust her—I’ve had difficult travel days before. 

I just boarded my second plane of the morning. I was savvy enough to know that if I wanted to get out of this city, I had to do it myself and before anyone else had a chance. I had my finger on the airplane mode switch on my phone as we made our final descent, and I switched into full service and googled the number for the airline the moment we landed. I called and went through many verbal menu lists, saying “other options” every time until I was finally able to speak to a human. The agent gave me the last seat on the flight before I even had time to deplane and arrive at the gate counter. A crowd from my first plane had already gathered there by the time I arrived, and more passengers quickly filled in the space behind me. A woman at the counter made an announcement: “Unless you are the passenger who just made a reservation by phone, I cannot help you. Our plane is full.” I stepped up. “That’s me.” “Smart girl,” she said as she printed my new boarding pass. Not so much smart as driven. I want to hold my brother’s hand while he still has a pulse. 

So now I write from the plane that will take me to the city where my brother will die. This morning I scrolled through Facebook messages between my brother and me. We are kindred spirits—both writers and identical as children except for his bright red hair and freckles. He is also an atheist, and I had recently shared my doubts with him for the first time in writing. We wrote about faith and living without it. We wrote about the tumultuous family life we both knew, even though at 43 he is 15 years older than I am. We wrote about forgiving those who hurt us. We wrote about writing and our projects and aspirations. He is a professional writer and a wealth of insight for me, and I am so proud of him for his accomplishments. 

In a later exchange, he told me that because of the deep connection he had felt with me in our written words before, he wanted to share something with me that I was to keep secret. His marriage of 18 years had fallen apart. I promised to keep the secret (and did until he openly announced it weeks later), and I wrote back with love and support. He received my supportive words with gratitude, but he didn’t say “I love you” back. Now that I think about it, I don’t think he ever did. It never bothered me at the time, but now that I am almost certain he will never speak again, I would give so much to have those words. The whole reason I opened our messages was to see if they were there.

Now I’m being selfish. I told him that I loved him, but I failed him in a way I will never forgive myself for. He’s a bit of a narcissist, and he often posts attention-getting statuses on Facebook or on his blog. We share dramatic tendencies, but I try to keep mine hidden. He doesn’t, so I was not surprised to read a social media update from him two months ago saying that he was in the hospital. Many of his “fans” (he’s a celebrity in some geek circles) commented with their concern, and he assured them that it was not a major issue—that he would be fine. I was curious, but I decided not to pry. I figured that he would tell me if he wanted to tell me, and I didn’t want to feed his ego by begging him to expound on his vague updates. I knew about his divorce before almost anyone else did—he wouldn’t keep big secrets from me.

Shame on me. He did keep a secret. He was dying, and he knew it. Why didn’t he tell? I may never know, but I suspect it was because the disease he has is strongly associated with lifestyle choices. He needed a liver. He found out four months ago, and he told his doctor that he hasn’t had a drink since then. His doctor believes him—but the damage has been done. In two more months he would have been eligible for a liver transplant. His hospitalization in April was due to complications from his chronic disease. He came into the emergency department the night before last with yet another complication, and at some point yesterday he was “found down” by nursing staff, with dangerously low levels of oxygen for an unknown period of time. He is not medically sedated, but he remains in a coma on a ventilator, his pupils fixed and dilated. That is all I know, and I’m not sure that I can trust it. The doctor spoke with my other brothers who spoke to my father who spoke to me—so what I tell you is fourth-hand at best. He had been living with his wife again for the past three weeks for “logistical reasons,” and even she knew nothing about his disease. His five brothers and sisters didn’t know. His parents didn’t know. He could have died alone.

What if I had asked? Would he have told me if he thought I cared? Could I have helped him find the courage to reach out and ask for help and support from the people who love him unconditionally? I’ll never know, because I never tried. I can’t stop thinking about his last moments of awareness being spent alone in a hospital room in a distant city. I can’t stop blaming myself—the sister with the deep connection. I should have known—and when I didn’t know, I should have asked. 

I am painfully aware of my mortality. And I haven’t given much thought to heaven or hell. And I think that’s the way it should be. My brother will not die alone, but he was alone when he slipped into oblivion. If he hadn’t been alone, he might not have gone there at all. He was alone because we all thought he had half a lifetime left to live—I saw him twice a year at most. He was alone because he didn’t tell anyone that he was sick—perhaps he felt he couldn’t. He was alone because I didn’t see deeply enough to know without being told, and I didn’t care deeply enough to ask when I didn’t know. 

I’m not sure if I believe in heaven. I know that I don’t believe in hell—that’s a choice I’m making to get through this day. But eternity, if we exist in it at all, is in the future. Eternity is dimly lit from here and viewed through a foggy glass. Since I cannot prove it, eternity is not a promise—and every moment we spend dwelling on it is a moment taken away from the precious promises in front of our eyes. 

I can promise that people often die before they’re ready—don’t assume you have 80 years to be involved in the lives of your loved ones. I can promise that someone in your life has a secret that they fear they cannot share—assure them of your unconditional acceptance. I can promise that you don’t know everything about everyone you love—so never stop asking questions. I can promise that people die alone every day in rooms full of people who love them—alone because they were never truly known. That is my greatest fear. 

So the pain goes both ways. My heart hurts because my brother didn’t return my affection before he might have run out of chances. And it hurts more because I didn’t invest in knowing his secrets, even if he thought they could never be known. 

Readers, do you have secrets? Share them here—do not die alone because you fear the consequences of being known. Is there anyone you love who needs to hear those three words from you? Tell them now—don’t break their hearts or leave them questioning your love if you suddenly run out of chances to tell them. 

I covet your thoughts, your prayers, and your words. I am alone for a few more hours, but not lonely. I have not known grief like this—thank you for being with me on the journey.

Photo copyright lcsnaps “Sunset Sadness” Dreamstime.com

Who Jesus is to Me

night blindness

“Who is Jesus to you?”

It’s a good question. It has to be—Jesus himself asked it of his disciples in Mark 8. That chapter is one I have kept coming back to over the past few years, and I returned to it again as I prepared to answer this question from a reader on my About page. It was difficult to read—it always is, because I see myself in Mark 8.

I’m there from the very beginning. I’m there with the disciples who are perplexed about food only two chapters after Jesus had fed the five thousand with five loaves and two fish—do they not have reason to trust? I’m there with the Pharisees who ask for a sign from heaven—is what they have already seen not enough? I’m there again with the disciples once more concerned about loaves of bread, and I can deeply sense Jesus’ frustration in his words to them—“Don’t you remember what you’ve seen me do? Are you really this dense?” (my own paraphrase). I’m there with the blind man whose friends brought him to Jesus when he couldn’t (or perhaps wouldn’t) go there himself—my friends have remained beside me even in my darkness, and my healing has also been gradual.

And I’m there when Jesus asks the ultimate question—the question that has left my steady faith in a tailspin. “Who do you say that I am?”

Who is Jesus to me?

There was once a time when I answered the question the way Peter did—he is the Christ, the Messiah. Will I ever again have a one-line answer to this question? I currently do not, and that is why this is a post instead of a comment under my reader’s question.

Dear reader, I cannot say with confidence that Jesus is the Christ. What I can say is that I place my hope in something far greater than I am—my brother would call it “the universe.” I think I would call it “God,” even though I have not yet heard a well-established God-claim that I can believe in. And although I don’t know exactly who Jesus is to me or even who he should be to me, I feel that it is through Jesus that I am able to better understand who God is. Did he exist? I think so, although I believe that some of the claims that he did not are thoughtful and worth considering. Was he somehow both God and man? I do not know—but the idea that he was paints a picture of a God who made a way for me to know him. Did he give his life for me? I do not know, but I’m not offended by the example he provides and his call to come and die—there is so much in me that needs to die. And does he live today? I do not know—but if He is alive then the Word is alive, and I am not bound to the scriptural interpretations of other people from another world that sometimes point me to a God I could never worship. Like the blind man in Mark 8 who encountered Jesus, I see something—it’s just not quite clear.

A believing friend who knows of my struggle told me several weeks ago to not be lukewarm like the Church in Laodicea in Revelation 3—it is better to either accept Christ or reject him. I disagree with the unspoken conclusion my friend had come to—that my undecided heart is lukewarm. I was too emotionally exhausted to argue that night. A lukewarm heart is complacent. Although I am undecided about who Jesus is to me, I am not complacent. That’s why I’m here—it’s why I write. My heart burns within me; it is zealous, and its door is wide open even before the knock that I wait for. I pass through it to love the unlovely, and I allow in even those who hurt me. I listen for the voice of Jesus and often think I sense it…and then I’m reminded to fact-check with scripture, and I just don’t know any more. The letter to the Church in Laodicea ends with the words “He who has an ear, let him hear what the Spirit says to the churches.”

We see similar wording back in Mark 8: “Having eyes do you not see, and having ears do you not hear?”

Having eyes do you not see…

I told you that I see myself in the blind man in Mark 8. In Mark 10, I find myself again—this time in Bartimaeus, a blind beggar. He cried out to Jesus, begging for mercy—oh, I’m there. Some rebuked him—and I’ve felt that, too. But he wasn’t lukewarm, and their rebuke made his fire burn hotter as he begged for mercy again. Finally he heard the precious words, “Take heart. Get up; he is calling you.” Just typing that made me cry.

And then came the question—that glorious question. This same incarnate God had asked two chapters before, “Who do you say that I am?” And knowing who he was—knowing the full extent of the impact of this collision between the greatest of great and the lowest of low—he humbly asks this man a different question.

“What do you want me to do for you?”

I saw myself in a blind man whose healing didn’t come all at once—who could see something, but only dimly at first.

I saw myself in disciples who faced the question, “Who do you say that I am?”—a question that came after they demonstrated their own form of blindness and failure to remember what Christ had done.

I saw myself in a blind man who lacked sight, but not fervor—a man who begged for mercy until Jesus called for him and asked, “What do you want me to do for you?”

And oh, I see myself in his answer to that question as my heart echoes these words:

“Rabbi, let me recover my sight.”

So who is Jesus to me, dear reader? I can’t quite see clearly enough to tell you—I see something, but I’m waiting for more. In the mean time, I respond to your question from Mark 8 with the hope of Mark 10. Until my eyes can see, my ears are waiting to hear the words “Take heart. Get up; he is calling you.” My ears are longing to hear the question, “What do you want me to do for you?” I have my answer ready: Rabbi, I want to see.

Jesus, Son of David, have mercy on me.

For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known. 1 Corinthians 13:12

Image © Dirkkoebernik | Dreamstime.com – Blurred Lights From Road Traffic Photo