Survival Guide: Lisa & Eric Barlow
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.
Is there a mantra, verse, or symbol that has helped you persevere day in and day out?
"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." (Jeremiah 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 when your outlook switched from despair to hope, or is it more of a daily rhythm of choosing?
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?
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 similar challenges as you have?
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.
