It's uncommon to hear a customer sing out a hymn in the middle of the bustling lunch rush at a Marriott hotel in suburban Chicago. But then again, Joni Eareckson Tada is no common customer.
As Joni and I finish our chat over salads at the hotel's restaurant, she surprises me by asking if we could sing my favorite hymn, Martin Luther's "A Mighty Fortress Is Our God," before we say good-bye. Joni's in town with her husband of 22 years, Ken, for a fundraising event for Joni and Friends (JAF), her organization that ministers to the disabled community worldwide. As we join voices over the hum of the noontime lunch crowdJoni's ringing out clearly and confidentlythe unintended poignancy of the lyric, "Our helper he amid the flood of mortal ills prevailing," almost moves me to tears.
That's because if anyone should know about mortal ills prevailing, it's Joni, 54. At 17, Joni, an athletic, horse-loving teen, dove into shallow water, hit a rock, and became paralyzed from the neck down. For the last 37 years she has endured the physical consequences of quadriplegia: the daily pain; the frail bones weakened by lack of use; the ever-looming danger of bladder infections; the potential for pressure sores or a collapsed lung; and total dependence on caregivers for the most intimate of bodily functions. Yet despite unremitting paralysis, Joni has transcended the limitations of her life in a wheelchair to become an acclaimed artist and singer, author of more than 30 books (including her recent autobiography, The God I Love, with Zondervan), sought-after speaker, radio host of a nationally broadcast five-minute radio program, passionate disabilities advocate, and world traveler. As we speak, Joni's gearing up for a trip this fall to connect with ministry partners in Ethiopia, Thailand, and India.
According to Joni, 49 million people in the U.S. today are affected by disabilitiesand only 5 percent of them attend church. Joni created Joni and Friends in 1979 to provide encouragement and resources for this largely unreached people group. JAF, which celebrates its 25th anniversary this year, offers five-day Family Retreats at regional camps to provide a much-needed break for those grappling with the demands of emotional, physical, and mental disabilities. Field offices seek to increase disability awareness within the local church through speakers and tailor-made materials. And JAF's international outreach, Wheels for the World, refurbishes discarded wheelchairs, ships them to Third World countries, and delivers them to those who never could afford the precious gift of mobility on their own.
In addition, Joni has become an outspoken advocate for life. The credibility granted her through her personal experience and her faith enables her to address key bioethical concerns that impact the rights of the disabled and our society at large. Here Joni talks to TCW about life in a wheelchair, the purpose of suffering, the need for community, and the challenge for Christian women to engage our culture.
I'm amazed by all you accomplish. How's your health today? I feel so comfortable right now. No bladder infection, no pressure sores to deal with. I've got lots of lungpower, so I can even sing. Oh boy, I'm happy!
Many people feel they never could respond to being in a wheelchair with the kind of faith you have. But they could.
I'm no expert at being disabled. It's hard. It's always inconvenient. Every morning when my girlfriend comes in with a cheery hello to get me up, I take a deep breath and think, Here we go again. Then I pray, "OK, Lord, show up big time. I need you, Jesus, very much today." It's a daily, hard-fought-for, desperate pulling down of grace from heaven.
If you were in a situation such as mine, you'd wake up each morning wondering how you were going to make it till noon. But then you'd turn to God and say, "I can do all things only through you if you strengthen me. So show up and strengthen menot just for the morning, but every minute, every second."
I've had to learn to lean hard on God. And anybody can do that.
It sounds as though you have great friends who help you. My friendships go way beyond talking about what was on television yesterday. They have to, because my girlfriends apply my lip liner. They clean my catheter. They empty out the leg bag that collects my urine. I could not do what I do without my girlfriends.
But what about girlfriend fun? Oh, you have to do that girlfriend-lunch thing, too. One of my girlfriends recently told me we needed to check out the makeup counter at Nordstrom's to see what's new. So when I'm back home we'll probably do that.
Does this take some of the care-giving pressure off your husband? Big time. I fight hard not to turn my husband, Ken, into my caregiver. I want him to be my husband. When it comes time for Ken to help me each eveninghe gets up and turns me over in the middle of the night to avoid pressure soresI don't want him to think, Oh boy, one more thing. My friends give Ken a chance to break free of the male-attendant mode. That makes me feel good, and it binds us together in a common bond of love and trust.
How do you express that affection? That's a challenge. Human touch feels so good, and it's something I can't experience easily like most people. The truth is, I have no sensation in most of my body.
I don't want to make it sound as though Ken and I never touch. We do. But Ken's touch often has to be purposeful: getting me undressed and into bed, tucking the pillows in around me, massaging my neck, asking me if I'm OK. I can't grab his hand and kiss or hug him. I can't just lie down in front of a fire and snuggle with him under an afghan, as other husbands and wives can. That's when it's hardest for uswhen we see other couples cuddling. I miss that kind of spontaneous intimacy so muchand so does Ken. There's that sense of deprivation.
You've said you believe God allowed your accident. That's hard for some people to accept. That's because God is the author of every good thing, and people wonder, How could quadriplegia be good?
Too often we try to figure out how God might fit our circumstances into his plan for good, which we think will result in a new job, healing, somebody's salvation, or a husband coming to repentance. But God's driving desire is to rescue us from sin. His goal is to aid us in rooting out everything that separates us from our ultimate happinessbecoming more like Christ. We think happiness is found in purchasing that tennis bracelet, getting that second car, redecorating that back bedroom, or losing those extra pounds. Yet Jesus constantly tells us, "Be holy as I am holy." We sing about his holiness on Sunday, but on Monday, how many of us say "no" to our prideful choices and "yes" to his way?
Even if his way is incredibly hard? Oh, I have the easy way.
How can you say that, being confined to a wheelchair? Sometimes I look at some of my friends who are struggling with obeying God, and I thank him that because of my disability, I don't have a lot of options. I can't reach for that pleasure, or grasp at that thing I think might give me happiness. I have no choice but to look to God to meet all my needs.
In his book A Shepherd Looks at Psalm 23, Philip Keller, a former shepherd, explains that sometimes a shepherd needs to take his rod and splinter a certain lamb's shin so it can't keep wandering off.
Before my accident, I was that wayward lamb. I was going to purchase my birth control pills, go off to college, sleep with my boyfriend, and do my own thing. Then God took his rod and splintered my shin so I would have to be carried in his arms. The cracking of my shin is a severe mercy. But look where it's landed mein God's lap! And that's a pretty nice place to be.
I don't follow a capricious God who's caught off guard by things such as my diving accident. There's no monkey wrench in God's planand that encourages me.
Often Christians give pat answers to suffering. [Sighs.] You have no idea what it feels like to be with people who are quick to give you 16 biblical reasons why you're suffering.
The reality is, God wants to give us his joy, but he shares his joy on his terms. Some of those terms call for us to suffer, as his Son did. God's goal is to make us more like him.
I'm not saying suffering's a really neat thing. Lamentations 3:33 says, "For he [God] does not willingly bring affliction or grief to the children of men." Our suffering doesn't bring God pleasure.
But author Thomas Merton once said that if you want to be able to endure affliction, think of the One who suffered the greatest. It was the Father's plan to have Jesus go to the cross, which involved torture, murder, injustice, and treason. I don't understand it. But I do know that it means my diving injury has potential to become a blessing. While it may have been Satan's intent to shipwreck my faith, it was God's intent to accomplish something marvelous, something grand, through it.
What would you tell a mom of a disabled child? I wish my friend Ruthie Brubaker could answer that for me. Her five-year-old son, little Benjamin, has undergone eight surgeries for spina bifida. Too many moms tell me how isolated they feel. God never intended us to suffer alone. That's why he created koinonia, or community. It's a wonderful thing when mothers get together with other mothers and talk about what it's like to raise a child with a disability. That's why JAF offers Family Retreats. There's such healing in having others understand what you're going through; it helps you go the next mile. If you haven't found that community, pick up the phone and call us. Take the initiative. Don't go it alone.
How can others help? When I was first injured, my mother had so many people tell her, "Here's my number. Call me if you need anything." That doesn't work. But there were some women who phoned her to say, "I'm heading over to the grocery store. Just give me a quick shopping list. I'll be happy to pick some things up for you." Or, "Got any stuff I can take to the dry cleaner for you? Let me drop it off."
It means so much when women roll up their sleeves and break through the fear factor.
Why is there a fear factor? None of us wants to be in that position where we're trying to help but we get embarrassed, say something stupid, or do something not only wrong but also dangerous. All those things are completely understandable. But all it might really take to be a true help is to sit down with your girlfriend and say, "Look, I've seen you with your five-year-old. I'd love to stay with Scottie for the afternoon while you get your nails done and run some errands. What would that involve? I want to do this."
What would you say to someone who's tempted to end her suffering? When I wrote the book When Is It Right to Die?, I said, "Yeah, you might want people to pull your plug. But don't think you make decisions in a vacuum." No man's an island. Your decisions affect everybody around youthe oncologist and his family, the nurses, the cafeteria workers, the people in the hallway of the hospital, the staff, the aides, your colleagues, your neighbors back home, your husband's coworkers.
Everyone will hear about your decision, and it will either help push our culture in one direction or the other. Newsweek columnist George Will once compared culture to this giant slab of molasses moving at glacial speed. Here we are at the base of this massive slab, our decisions like little arrows that nudge it this way or that. But it requires tens of thousands of little decisions to make culture change its course.
That makes change seem nearly impossible! But we can influence culture in ways as simple as what we say to the woman who's filing and polishing our nails. It doesn't have to be a letter to the editor. It doesn't have to be politicized. Share your views with your hairstylist, your manicurist, your fellow PTA members, or with your girlfriends at Starbucks. Speak about your concerns over issues that impact the sanctity of life, or our culture's emphasis on the "me first" thinking that's unraveling our society and eliminating moral absolutes.
If you feel called to take bigger steps, become a patient's advocate in your local nursing home, someone who's concerned about elder abuse. Or join a bioethics committee at a nearby hospital.
So Christian women need to be more alert to what's happening culturally? Oh my goodness, yes. Most of us can read up on the issues. Dr. Nigel Cameron of the Center for Culture and Bioethics and I are writing a book called How to Be a Christian in the Brave New World. Its whole purpose is to provide a handbook for the average layperson who's clueless about issues such as euthanasia or genetic stem-cell research. We want to address how these issues impact the average soccer mom.
What do we need to know about stem-cell research? That all the promising medical therapies for Parkinson's, multiple sclerosis, or liver disease that have resulted from stem-cell research have been harvested from adult tissue. Despite the current movement to use human embryos for this research, no successful therapy has yet been developed from stem cells derived from fertilized or cloned embryos. Embryos are programmed to grow, so the greatest problem researchers are having is controlling that propensity, which could cause tumor growth. Because of that, no embryonic stem-cell treatment is being used in human experimentation right now; it's too dangerous.
One of the greatest opportunities a woman can make use of now is to have her child's umbilical cord frozen and stored so his tissue will be available one day if he needs it. There's no tissue-rejection factor, because it's his DNA. There's no possibility of tumor formation. It's cost effective. It's everything good. Right now it's new and expensive. But in the future, I see it becoming standard hospital procedure.
How do you encourage those in despair over their disability? I first talk to their friends and their family and ask them to gather around this person. Prayer is essential. We wrestle against the powers and principalities that want to use an injury or disease to cut a life short through suicide.
What helped me most after my accident, when I was in such despair, were the people who kept me committed to reality. One day my friend Jackie, who'd just gotten a yellow Camaro, visited me and said, "I'm taking you out of the hospital today for a picnic." She and my friend Connie wheeled me outside, and we went to Taco Bell. Something small like that got me reconnected to reality.
If a person's looking for a Dr. Kevorkian to end her suffering, the real answer is to mobilize community around her. Pray and then keep her connected to reality. One day becomes another day, and hope buildsand hope springs eternal.
Does hope spring eternal for you? I keep a pair of size-9 red high-top shoes in my art studio as a reminder of that hope. They're my "dancing shoes." I can fit into them, and they're pretty snazzy looking!
I love to dance! At a recent family camp in Texas, I was on the dance floor one night swinging and swaying in my wheelchair with all the other families and their kids to the song "Celebrate." At another JAF camp, a group of moms had gone to Wal-Mart, bought the high tops for me, and had all the families autograph them. They presented them to me that night as dancing shoes for heaven, when I have my new bodyone that won't be paralyzed.
Isaiah 35:3-5 says: "Strengthen the feeble hands, steady the knees that give way Your God will come Then will the eyes of the blind be opened and the ears of the deaf unstopped. Then will the lame leap like a deer, and the mute tongue shout for joy." While I can't wait to get that new body in heaven, what I want most is the new heart.
I want to be used by God to remind women to take heart, your God will come; he'll rescue you. We only have a little bit further to go, and five minutes of heaven will far outweigh the momentary afflictions of this life.
For more information on the ministries of Joni and Friends, check out Joni's website at www.joniandfriends.org.
Copyright Â© 2004 by the author or Christianity Today/Today's Christian Woman magazine.
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