YOUNG SUFFERING CLUB: Lisa and Eric Barlow {THE STORY}

YOUNG SUFFERING CLUB: Lisa and Eric Barlow {THE STORY}

We first met Lisa and Eric Barlow while we were all in brain rehab at Casa Colina about a year after Katherine's stroke. They were the only other couple our age in the program. We've commiserated in ways only fellow young sufferers can about the horrors of brain rehab, the burden of disabilities, and the unknown future ahead for us all. And yet we've also shared great joys made all the more precious in light of the pain that proceeded them. We both wept when we heard Lisa was pregnant, and when we met newborn Eva in the Summer of 2014, Lisa said with her characteristic New York grit, "Well, what are you guys waiting for. If we can have a baby, you sure can too!" And we took her advice to heart. The story of this family will forever be woven with ours, imprinted on our hearts.

This is their story of suffering. What yours?

{ERIC} We met in college, brought together by our common calling to a simpler life among the urban poor.  We were married while both teaching in Brooklyn then made our way to Los Angeles for an internship in urban community development, looking for more training, community, and guidance for the future, with a dream to one day open a school together.

Six months into the internship, with Lisa barely 5 weeks pregnant, we moved into an apartment in South Los Angeles with the intention of building relationships with our neighbors and starting a Bible study group.  A week later, Lisa started having some back and neck pain.  That night, she woke with acute pain in her neck and loss of feeling in her fingers.  We drove to the hospital.  Lisa got out of the car and walked into the emergency room.  It was the last time she walked.

Over the next few hours, Lisa progressively lost feeling and then movement in her toes, her feet, her fingers and hands, then her legs and arms.  Unknown to us, she was suffering from transverse myelitis - inflammation of the outside layer of her spinal cord - in the 4th vertebra in her neck.  Her brain was losing the ability to communicate with her body below that point.  She was unable to sit up, unable to turn over.  Her breathing became increasingly labored.

Doctors began to consult.  Had she experienced any illness or fever lately?  Had she received any vaccinations?  Had she travelled anywhere exotic?  An MRI confirmed the myelitis but the cause was not apparent. 

After hours in the emergency room, Lisa was moved to a bed in the ICU.  Unable to breath on her own, she was intubated, sedated, and placed on a ventilator.  She would remain in the ICU for over a week.

After several days, strength returned to her lungs, she was taken off the ventilator, and we began to have hope that she would recover.  She was able to breathe on her own again but still could not move a single muscle below her neck.  Another MRI confirmed swelling had subsided but the cause remained a mystery.  Dozens of doctors saw her, each with a new theory but no answers.  She underwent numerous procedures, biopsies, and treatments.  When one approach didn't work, sometimes the opposite was attempted.  The doctors were grasping at straws, trying everything, but nothing seemed to have the hoped for effect.

It was during this time that we learned she had lost the baby, but it wasn't until much later that we truly felt the pain.  We were focused on her recovery, though it seemed slow in coming.  We were grasping for answers as well - why had this happened, and why had God allowed it?  What was the next step, and what did this mean for our future?

After several weeks we began to fight a battle against the insurance company.  The health plan wanted to move her to a different hospital, but we had not gotten the answers we were looking for.  We delayed it by several days, but eventually Lisa was transferred to neurological rehab without ever learning the cause of her illness.  It remains unknown to this day.

We still had hope that Lisa would recover, however, and this was bolstered by the doctors who saw her in rehab.  80% chance, they said, that she would walk again.  She started a regimen of physical and occupational therapy, which was incredibly painful and humiliating, and showed some initial signs of return.  The progress soon stalled, however, and we began to get frustrated. Why was she still unable to move her hands, legs, or feet, even a little?  Our hope began to fade.

We felt lied to.  We felt lied to by the doctors and nurses and family members who said she would get better.  We felt lied to by God.  Other believers we knew and some we did not told us they had received words from God that Lisa would be healed, but where was that healing?  Why had He given us callings for future work that we could not do in places we could not go?  What was the point of continuing to strive and suffer?  We began to feel the pain of all that we had lost and it was unbearable. 

We felt so utterly alone - isolated from each other by these limitations we could not overcome; isolated from our friends and family who could not understand; isolated from the God who seemed so uncaring and cold and distant.

We received much help and support during this time: pastors and leaders in the church prayed and wept with us; a group of friends was constantly praying at the hospital for the 6 weeks Lisa was there.  Family came from the East Coast so we wouldn't be alone and took turns cooking and cleaning for us for over a year.  God provided many necessities: a new apartment close to the rehab facility, an affordable wheelchair, jobs and supervisors who were understanding and continued to pay us even though Lisa couldn't work at all and Eric worked at best half the time.

Eventually, with this support and provision, we began to fathom a life with disability.  We got a car and began to travel.  We started thinking about the future.  We started looking for a house back in our old neighborhood, believing - though we couldn't see how - that God's work for us was not finished there.

Every day since then has been a struggle.  We have cried much.  But though Lisa has not recovered physically, God has been healing us in other ways.  We bought a house and made it accessible.  We began to get to know neighbors and develop friendships.  Lisa enrolled in graduate school and obtained a second masters degree.  Eric was promoted at work.  We found things we could do for fun and ways that Lisa could gain small measures of independence.  Lisa finished her studies and found a new full-time job which allowed her to work with children again. 

And most recently and blessedly, God gave us the gift of our beautiful daughter.  We named her Eva because of the life God brought into our lives through her birth.  Through all these things God has been healing our hearts, showing his faithfulness and goodness despite the great suffering we experience.

We do not know what the future holds for our family, but we trust God to provide.

{READ THE BARLOW'S INSIGHTS ON SUFFERING, HERE...}


YOUNG SUFFERING CLUB: Lisa and Eric Barlow {THE ANSWERS}

YOUNG SUFFERING CLUB: Lisa and Eric Barlow {THE ANSWERS}

* What was something that others did do that made you feel less alone as you were going through the season of suffering?

{LISA} - They were present. I had two really good friends who were able to sit with me in my grief and listen to my darkest thoughts, fears, and feelings without judging me or being overcome needed those spaces.

-They helped me find ways to do the things I love. At first the boredom and uselessness were unbearable. People invested a lot of time and money in helping me figure out how to read independently, building the box that lets me eat by myself, or repurposing a soapdish to hold my paints.

- They indicated that they still wanted to be in relationship. It now takes more work to be my friend. In fact, at some point, we were told to hold onto the friends that we had before I got sick because we weren't going to be able to make any new ones. However, God has really blessed us with wonderful friends both before and after I got sick. It is been a huge blessing and a sign of God's love whenever people have gone out of their way to make their lives accessible. Whenever somebody purposely rents a first floor apartment, put a ramp on their house, or has a party at my house it reminds me of Jesus's incarnation.

- They allowed us to serve. One of the hardest parts of my disability is becoming a taker of help and not having ways to give. For example, our church moved Sunday school to the first floor so that I could be a teacher and my mom came out to help with cooking and cleaning so that Eric and I could be foster parents.   

- They took care of Eric. Especially the beginning, I wasn't in any place to support Eric emotionally, but many people stepped into the gap with prayer, meals, friendship.

 * What is the best thing to come out of your pain?

{ERIC} The best thing to come out of my pain has been perseverance in the knowledge that God has not forgotten or abandoned us.  Even in the very darkest times when we were struggling with the will to go on living, God would meet me in a quiet moment by myself and remind me that he is always there and that he loves me.  God has continually provided for us what we have needed - a wheelchair, a car, a house, jobs - and even given us great joys - each other, our daughter.  I am all the more thankful for these blessings because of the pain we have endured.  "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything." James 1:2-4


* How has your suffering shaped your image of who God is?

{LISA} I think before I got sick I felt like God was near to me. While there was a wonderful intimacy, I think sometimes I failed to see the bigger picture. Through the course of my illness and disability I think I've been able to see the longer view. I understand what Martin Luther King meant when he said the arc of history it was long and it bends towards justice. God's work in the world is a big and long story and I play a small part. I relate now more to the power and majesty of God. My faith is one of willful obedience, not the youthful exuberance that I once had. I choose to honor God and I choose to follow him on days when he feels close, in seasons where he feels far, when I feel safe, protected, and cared for, as well as when I feel angry and struggle to understand His purpose. I don't want to trade the ways that the suffering has matured my faith but I hope for the day when God feels as intimately close as he used to.

* Is there a verse or lyric, token or visual that has daily helped you make it through each moment?

{LISA} "Thus says the Lord of hosts, the God of Israel, to all the exiles whom I have sent into exile from Jerusalem to Babylon: Build houses and live in them; plant gardens and eat their produce. Take wives and have sons and daughters; take wives for your sons, and give your daughters in marriage, that they may bear sons and daughters; multiply there, and do not decrease. But seek the welfare of the city where I have sent you into exile, and pray to the Lord on its behalf, for in its welfare you will find your welfare." (Jer 29:4)

This word is sent to the Israelites when they're in a low and dark place. They've been dragged from their home, watched those they love die and suffer, they have been humiliated. They have been exiled to a strange place when they thought all that God had for them was in Jerusalem. I identify with that. Everything about my illness and disability was humiliating. I was brought so low. The most private things in life became public and messy. The kind of deep hurts that you want to grieve and suffer privately were shared widely. We had come to Los Angeles temporarily thinking we would either go back to New York or go to the mission field in two years time. I didn't like it here. The Israelites had heard from a false prophet that their suffering was soon to be over and that they would be restored and brought back home. But through Jeremiah, God told them a really hard truth. Everything was not going back to the way it was, they were not going home anytime soon, and that God's purpose for them was to remain in exile. God was going to restore his people eventually, but not in the lifetime of his hearers.

This is the truth for Eric and I as well. God has chosen not to heal my body right now. God has chosen not to send us overseas or back where we came from. God's purpose for us is to remain in Los Angeles. God wanted the Israelites to live in that reality, to build houses, plant gardens, have children, to move forward even if this isn't how they envisioned their lives. After I got sick I really wanted just to say, okay, I will sit in this chair until I die. God you have stripped my life of purpose and meaning and I will sit here and wait to meet you. But God doesn't have the Israelites just to sit and endure their captivity, he calls them to live. I've met a lot of people who respond to their illnesses and disabilities by giving up. It's tempting to me every day to say I will serve God when I can walk, when I can use my handS. Someone else should serve God because it's easy for them to do so. Instead God calls me to make a home, make a family, and to keep living, regardless of how difficult it may be for me to do so or how easily it could have been done by someone else.

The problem for the Israelites is hidden in a calling. God tells them that they need to seek the peace and welfare of Babylon, of the place where they are in exile, of the place. They absolutely do not want to be. God promises that they will find welfare, peace, well-being, when they seek it for their neighbors. There are many things that have been suggested to me that would help improve my welfare, that would put me at peace. People have suggested relaxing, resting, taking more pain medication, to make me feel better. But God's calling is different, he says that if I hope for well-being and peace I need to work for the well-being and peace of others, even during my own period of exile.

* Was there a turning point moment when you recognized and moved from the agony into hope? What helped this shift occur or is a more of a daily rhythm of choosing?

{LISA} After about a year of intensive rehab it was clear to me that I wasn't improving in a way that I was going to be able to return to to the way things were. I think that was the darkest moment because I felt like God placed this calling on our lives and then took away our ability to do that, or really anything. I had sought counseling basically from the moment I woke up in the ICU, but did not have a positive experience with what the hospital provided. Eric and I decided that it was worth it to pay for private counseling. I was recommended a Christian woman with a PhD in psychology, not only did she meet all the requirements, but she had lived with a disability  her whole life. She helped me process my grief and return to God.

She told me two things that made all the difference. First, God had not changed our calling. Just because it seemed impossible didn't mean we weren't supposed to step forward in faith. This truth took deep root in us and lead us to move back to South LA. Our return brought many challenges, but also physical, emotional, and spiritual healing.  As we pursue God's purpose for our lives, He provides what we need to meet the challenge. Doctor Gail also taught me to embrace the bittersweet. Even when wonderful things happen, it's never going to be like I have dreamt. I have to choose to willingly face the sorrow that allows me to experience the joy. If we never had our daughter, I wouldn't have to fully experience the heartache of what I can't do for her, but I would miss all the blessings as well.        

* What are the most important traits to develop as a caregiver?

{ERIC} A caregiver and the one receiving care have a paradoxical relationship.  While they are for each other the one person in the world who understands the other best, they will also never be able to truly understand the other's life.  While they both experience and participate in the same routine of care every day, they will never be able to trade places.  The caregiver can never really know what it is like to depend on the care of another - to be unable to provide for oneself.  The caregiver only knows the things asked for, not the things unasked.  The one receiving care can never really know what it is like to bear the burden of providing the care.  Becoming a caregiver means doing what is required with love, compassion, and patience in spite of that tension.


* What would you tell someone who is about to face that same (or similar) challenges?  OR If you could go back and tell yourself one piece of advice (or give yourself one bit of encouragement) before this all began, what would you say?

{LISA} Life isn't over. It took me some time to figure that out, and there were moments when I had wished it was. Looking at it now, I realize that we have been able to fulfill so many of our dreams, it has just looked different than we had planned. In my wheelchair I have completed a masters degree, been in five weddings, traveled for work, traveled for fun, built relationships with my neighbors, taught children to read, been a Sunday school teacher, planned events, coached a robotics team, been a foster parent, witnessed my niece's birth, returned to teaching public school, flown in a helicopter and hot air balloon, led parent trainings, bought a house, rode my bike on the beach path, and conceived, birthed, fed, and carried my daughter. There hasn't yet been anything that we really wanted to do, that was important to us, that couldn't be figured out. It's easy to focus on the things that God has not given, especially when it includes use of most of my body, but life is better when we focus on what we have been called to do, and the blessings that come out of it.


Lately (2 Months After John)...

Lately (2 Months After John)...

As of late, we've posted less on this blog and more mini-updates and lessons learned on Instagram and Facebook. For those of you who don't engage those social medias, here's a few updates in the life of the Wolf family...

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"Here is the world. Beautiful and terrible things will happen. Don't be afraid. I am with you." (- Frederick Buechner)

John Wolf, after one week of life in this joy and sorrow-filled place, may you never forget, your whole life through, that you are not alone. We are with you; He is with you.


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Perhaps these brothers , James and John, might also be "sons of thunder" like their Biblical namesakes, and we pray their fervor would be fueled by hope, their passions would be grounded in grace, and their truth would always be tempered by love.


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After nearly 3 weeks of life with John, pondering the miracle of his life and the rather extraordinary details of his birth, we wanted to record for ourselves and share with you the story of the day he came into this world so we might all remember to find God in the details of our stories, so we might not be afraid. {READ JOHN'S BIRTH STORY BLOG....}


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This experience of new parenthood must be some reflection of how God feels about us, smiling over our sleeping faces, waiting with giddy anticipation for us to wake up into a new day with Him, a day He has made for us. But to be fair, just like new parenthood, there must be some times when God smiles even bigger when we finally go back to sleep again.


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In the midst of James' rather chaotic childhood, one place of stability has always been our nighttime prayers, a mix of spontaneous requests and rote recitations, both spoken and sung, sometimes through yawns and sometimes through tears for seven straight years. And now, perhaps as an answer of sorts to all those prayers, James no longer rolls over in feigned sleep when his turn comes, but rather, he belts out his blessings over the little brother he loves and they mean something new to him and to us too, and we all say Amen and goodnight...


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A brainstem stroke affects the most basic, involuntary systems that give life and function to the human body, and we wondered how my lack of fine motor skills and impaired coordination and balance would affect life with John. As it sweetly turns out, perhaps the only primal instincts that run deeper than those lost in my stroke are those gained through motherhood. John, you are the best medicine.


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"If it is life, not death, which motivates us to flourish, and if love and sacrifice are at the heart of our humanity, rather than choice, then we must desire life, pray for life, manifest life and choose life for every other human on this planet, and in so doing, we all might know grace more." {READ 'CHOOSING LIFE' BLOG POST...}


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"Sometimes I need only to stand wherever I am to be blessed." (- Mary Oliver)

Living with disabilities is hard.
Living with a spouse is hard.
Living with a newborn is hard.

It seems we all spend a lot of time looking for different lives, ones we think we are owed, ones that aren't so hard. But then sometimes, we're reminded that the best life and the greatest gifts are already right in front of us.


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Finishing some final edits on the "Hope Heals" book (coming April 2016, published by Zondervan). It's one thing to occasionally remember what God has done in our lives, but what a huge gift for us to have a tangible reminder, in black and white, of God's hope and healing in the midst of our deepest hurts. We are already praying it gets into the hands of those most who most need that same reminder too.


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Like an old newspaper, John's "1 Month" onesie is already obsolete. 6 weeks with a newborn is nothing if not a reminder that life blooms at an unexpected and breathtaking pace, which of course is exactly what makes it so beautiful. Thus the task at hand is learning how to love well whatever and whoever is in front of us for however long they are there.


Today started off perfectly. John had slept 9 hours and was still going, and we woke feeling so refreshed. Jay even went on an early jog and brought home coffee which we shared over slices of camp toast so thick two eggs fit inside them. The dining room was calm and quiet as the sun rose, and it was just the two of us.

Then, as life sometimes goes, we found ourselves taking an unexpected detour to the hospital as I accidentally lacerated my eyeball by poking it with my no-fine-motor-coordination right fingernail (I wish I was joking). Nothing quite kills a lovely moment around the breakfast table like a bleeding eye!

Sweet friends came over to watch the boys. On the way to the hospital, I almost cried feeling I had yet again ruined a perfectly good moment with my persistent health issues. Then Jay comforted me in the wise way he does, "I'm just glad we didn't have to make this hospital run with a newborn, after a sleepless night and a chaotic morning. We can do this. It's OK." I dried my (bloody) tears. He was right.

Thankfully, after a few hours at good old home away from home UCLA Hospital, it was determined the cut wasn't too deep and my eye will be fine.

Sometimes life's "easy moments" are a sweet gift--relish them--and sometimes they're a preparatory grace--recognize them. Either way, give thanks for them because God knows you needed them.


"Cease endlessly striving for what you would like to do and learn to love what must be done." (- Goethe)

Anticipating, dreaming, and hoping all give us life, yet the space between those expectations and reality is often the place most ripe for discontentment, so that even the sweetest circumstances can be discolored by what is not.

I haven't really left the house but a handful of times in nearly 2 months because it's just easier not to. Breastfeeding has been 10x harder than I remembered. James is asserting a newfound, pre-teen hyper-activity that makes patience with him a near-impossibility. And Jay and I are often stressed and annoyed and too tired to love each other well. And yet because of all this, the need to practice contentment is more important than ever.

Contentment is an evolving work of the Spirit, one that takes longer than we think--maybe our whole lives--and costs more than we want to pay--maybe our whole pride. Yet this work unveils the life we have as the life we really want, not because it's what we thought it would be but because it is ours to learn to love anew every day.


As James popped out of his room for the first day of 2nd grade sporting his "Big Brother James" t-shirt, Katherine and I looked at each other with a mix of wide-eyed terror and amusement. Should we intervene with a subtle outfit change before our not-so-little-boy's earnest but childlike proclamation makes him the target of playground bullies? But as we prayed with James before he left it was clear, we'd rather he unabashedly display love than be muffled by shame and fear; we'd rather he be courageous than live a comfortable and easy life. And we sent him off into a new year, with one foot in childhood and one foot in boyhood, knowing by his last day of school that will likely change but praying the good stuff growing inside won't. And everyone at school actually loved knowing James had finally become what he'd always wanted to be...a big brother.