“Well, I can understand,” she said. “And, oh, Ken, if I were you, I would feel exactly the same way.” Ken wiped his eyes and nodded again. She continued. “And I don’t blame you one bit. I don’t know what I would do if I were married to me. I just … don’t know what I’d do about it.”
Suddenly it felt as though someone had released the steam from a pressure cooker. The whole room felt lighter. For both of them. They both realized nothing “new” could be said about quadriplegia and marriage; it was what it was, and there was no bright lightbulb that suddenly flicked on. But just saying these words out loud, just voicing the truth without pointing fingers or casting blame, well … it was exactly what had been needed in the moment.
Finally, Ken spoke, saying typical Ken words.
“I think we should pray,” he said softly.
And so they did.
This sentiment of “I understand” and “thank you for understanding” turned into a litany that would be repeated from time to time through those years. Not much was ever added to it, and more words never seemed to be needed. And it was enough.
Until the day came when they discovered there was something worse in the world than the relentless tedium of paralysis, something that would make the boredom of daily quadriplegia routines seem like the good old days.
It was paralysis shot through with hellish pain.
SATURDAY, FEBRUARY 1998
“So, how is Judy doing?”
Ken prodded the fire with a poker, coaxing a reluctant flame between two lengths of oak.
“She sounded terrible,” Joni replied. “She would have come … but thought she’d better keep her virus to herself.”
“Good idea.”
Ken poked at the logs again, sending a few desultory sparks up the chimney.
“You wanted to go to Burbank today, didn’t you? To help with your dad.”
He shrugged. “It’s OK.”
“I’m sorry you have to stay around here all day with me.”
“No, it’s all right. Mom wasn’t really expecting me. Anyway, I have some papers to grade.”
It wasn’t the answer she had wanted to hear. She wished he would have said, “Of course I want to be with you today. There’s nowhere else I would rather be.” But that wasn’t how things stood these days. Spending full weekends together just didn’t happen much anymore. Fantasizing about what she wished he would say went precisely nowhere, like all the other empty fantasies she had entertained through the years. If wishes were horses, then beggars would ride. And Joni would walk. And Ken would have a normal wife.
She had been trying to give him extra space on the weekends. Stay out of his way a little. Lighten the load a bit. She had developed these skills in the early years of quadriplegia, trying hard to keep family and friends on board with her and not wear them out or drive them away. So, on many a Saturday afternoon, as well as on Sundays after church, she would take off with Judy somewhere … anywhere. She might go to her studio at the office to paint, or check out the mall. After church, she might have a long lunch with Judy or catch a movie with some girlfriends.
Back at home, Ken would be napping, reading a book, or cleaning his rods and reels. If she had to be home on the weekend, she tried to limit her intake of water so she wouldn’t have to rouse him from a nap to empty her leg bag.
But now Judy was sick and here she was, at home with Ken all weekend.
“Together” used to sound fun. In moments like this, it didn’t.
Neither of them spoke for a while.
“How’s the pain?” he finally asked. “Can I get you anything? Pain pill?”
“Not at the moment, thanks. It’s tolerable today. I think the massage sessions with Paulette might be helping some.”
“Good. Maybe I’ll have to try her sometime.”
Silence descended again. The atmosphere in the room felt heavy. Joni looked out through the patio doors at an overcast February sky. She knew she had a radio devotional to craft, and then … there was that book deadline out there. But she didn’t feel like crafting anything, let alone writing a book. Ken pulled a batch of student papers out of his briefcase, settled into his recliner, and began methodically reading and marking. He’s in his world, she thought. The world where he feels most comfortable. The world where things make sense.
The fire had dwindled again to a few sullen flames, and began to smolder. Maybe that last batch of oak hadn’t been properly seasoned. She remembered the dancing flames of a cherry wood fire back in the old Eareckson homestead in Maryland. Her sisters. Her dad and mom. The laughter. But that was long ago and far away. This fire wasn’t dancing at all. It was about to go out, and Ken was so preoccupied that he probably wouldn’t even notice.
He’s depressed. Again. He doesn’t want to be here. He doesn’t want to be tied down today. But that’s what I do … I tie him down. I’ve tied him down for years. And it’s so quiet. We don’t even talk anymore. Here we are, with a Saturday together, just the two of us for a change. And we don’t have anything to say. How sad.
The pain in her left hip was edging close to unbearable. She wanted to ask Ken for help, but these days, nothing anyone did seemed to help. Lift her hip a little. Loosen her corset. Pull up her corset. Tighten her corset. Joni glanced over at Ken, engrossed in his papers. A pang of regret gripped her. But she wouldn’t let herself cry. That would mean he’d have to get up to help her blow her nose. I’m wearing him out. I’m wearing everybody out. Ken. Judy. Francie. All the women who help me. This pain has become almost chronic. Daily. Never ending. It’s gone on and on; no one can figure out what’s causing it, and I don’t know what to do. Is my life beginning to unravel? Have I reached a limit in what I can endure? Have my friends and coworkers … and my husband … reached a limit in what THEY can endure for my sake? How much longer can we go on like this?
Her morning routines had become increasingly difficult. Now when her friends began her exercises, it involved at least an extra thirty minutes of stretching and pulling her muscles. She would say, “Oh, could you please pull on my back muscle? I mean, angle your hand toward the headboard and … that’s it. Now kind of rake up my back with your fingers. Gee … I can’t quite feel that. Can you dig in harder?” Yesterday it seemed to Joni that the two women had given each other quick little glances, as if to say, Can you believe this? Mornings used to be fun. They would all laugh and sing and say things like, “We get to go to work for Jesus today!”
But not so much anymore.
Not since the pain had swallowed up everything.
It wasn’t just “nagging pain,” the kind you could shove into the background or paper over with busyness. She remembered the feeling as a teen of hiking in Colorado and having a tiny sharp rock in one of her boots. It would have felt better, of course, to stop, take off the boot, shake out the pebble, and continue on her way. But that would be too much trouble and bother, and her sisters would say, “Are you coming, slowpoke? Let’s go!” Besides, the hike was so exciting and the mountains were so magnificent that she didn’t want to take the time. She would rather keep on keeping on with a little discomfort than have to stop the whole marvelous expedition, even for one minute.
She had tried the same technique when the pain burst into her life that year. Hiking with a rock in her shoe. She had tried to forge ahead, to limp along, to keep up her smile, and stay on her schedule. But she couldn’t. This was no pebble in the boot; this was jagged, twisted, razor-edged agony, the stuff of nightmares, that sent her good intentions and her normal priorities into spinning chaos.
All the activities she used to enjoy had become incredibly more complicated. Not long ago, she had been sitting in her studio, recording her Joni and Friends weekly radio program, something she had done for decades. On this occasion, however, she found herself confronted with a troubling choice. She could have Judy cinch her corset tighter, enabling her to breathe properly in order to talk but unleashing sharper pain in the process. Or she could loosen the corse
t, dialing back her pain a little. But then it would be a struggle to get enough breath to record.
Eventually, she did both. She read a page or two, stopped to tighten the corset, then read some more, stopping again to loosen it. She had finished the session, but it all seemed so very slow and took way too long to accomplish. And the end result — well, it wasn’t what it used to be. Everyone looked beat at the end of it.
If quadriplegia made marriage difficult, chronic pain made it almost untenable. Joni could easily understand why Ken had pulled back in their relationship, why he let others handle more of her care and worry about her pain management issues. He was maxed out! Of course he was. Physically and emotionally drained from waking up three or four times every night to help her. Tired of all the endless routines just to keep her going. It was too much, and he had stepped back a bit, delegating more and more of her care, for the sake of sheer survival. It wouldn’t help anyone if he slipped back into depression.
Years later, in retrospect, they would describe “negotiated spaces” and “demilitarized zones” in their relationship: issues they wouldn’t talk about, subjects they would never bring up, and emotional bruises they would keep hidden from one another.
Ken needed more breaks. Many more breaks from being with her, caring for her. He needed to be out on the ocean trolling for tuna, needed to grade his papers, needed to relax with a diet soda — his feet up and a really good TV program like “Top Ten Infantry Fighting Vehicles” on the Military Channel. He needed his quiet weekends. Of course he did. It was understandable, given the fact that life had become so very intense.
Even so …
Joni couldn’t help but feel she’d been abandoned. It was like that time when she was five years old, at the beach. Her parents had left her alone on a beach blanket and went back into the tent. Other adults were all around her, but she remembered thinking to herself that Mommy and Daddy shouldn’t have done that. Shouldn’t have left her alone under that wide summer sky on that long, lonely beach with the crying gulls circling overhead. Something about that wasn’t right.
Ken wouldn’t have described it as abandonment. From his perspective, it was more like “total frustration.” In the last year, they had sought out so many doctors and explored so many avenues to try to determine the source of the pain. Joni, of course, could never identify a source or a location — it was just deep and inside, somewhere above her left hip and she just hurt, and hurt like she had never hurt before. And it kept getting worse! Rather than alleviating and giving either of them a little space, it kept eating away at more and more of their lives.
Ken hated to see his wife suffer, but he didn’t know what to do, where to go, or where to turn. It was like a math problem in quantum physics for a first-year algebra student. What in the world was he supposed to do? It made him want to throw up his hands; it made him want to hide from the interminable reality of it, if only for a little while.
And now, Ken wasn’t the only one dealing with depression.
The constant pain was eating away at Joni’s otherwise happy countenance. She’d always been upbeat about her life in a wheelchair and had been able to lean into God’s grace and find the silver lining in the clouds. But this pain had begun to blanket over her bright spirits. For the first time since those dark days in the hospital when she was first injured, she was depressed.
The day was etched in her mind — the day when, for the first time, the pain had really ambushed her, shaken her like a slipper in the needle-sharp teeth of a terrier. For someone who supposedly “had no feeling,” the sheer intensity of it had been shocking. Frightening.
And yes, it had changed everything.
AUGUST 10, 1997
She remembered the very day when the pain began.
Ironically, the setting had been picture-perfect, and the company delightful. After all, it was Holland. And Joni, Ken, and Judy were in the home of their Dutch friend.
If it had all been a painting, she would have certainly painted herself at that table, with those people, savoring that moment. But there could be no pretending on that evening. Idyllic as it may have been, she knew she couldn’t remain in that picture one more minute. It was either call for help, cry out in agony, or burst into tears.
Right at that moment, interrupting that relaxed, mellow conversation was a hateful thing to her. Finally she blurted it out. “I am so sorry, but I have to leave the table. I must lie down.” Her voice had sounded much sharper than she intended, and it had the effect of a piece of china shattering on a tile floor. The dining room fell suddenly quiet. She could hear a clock ticking on a mantel somewhere, and the coffeemaker sighing in the kitchen. No one knew what to say. No one really understood. “Please,” she anxiously whispered to Ken and Judy, “I have to lie down.”
She had to take her mind somewhere else, somewhere away from that driving pain. She thought of the dining room and the scene outside that window, just before she wheeled out of the room. Even in the pain and panic of that moment, her artist’s eye had taken it all in: A setting sun casting a soft pink haze over the Dutch countryside. The image remained in Joni’s mind, like a half-developed photo, as Ken and Judy found a couch in a side room, laid her down, unbuckled her corset, and propped pillows under her back. Maybe she would come back and paint that scene someday. So lovely! An outline of windmills, venerable willow trees, and cows grazing in the distance. And swans, gliding down the crimson canal, with white herons delicately picking their way along the banks. Their hosts had set a beautiful table, with candles, heirloom china, and tulips — yellow and red — in glass vases.
She hoped the dinner conversation could go on without her, but whether it would or not, she had to get away … or really create a scene. How could she even describe it to anyone without sounding melodramatic? An ice pick between her shoulder blades. She had held it at bay through dinner, willing it to go away, trying so hard to enter into the lighthearted conversation, wanting so very much to hold that beautiful picture just a little longer, hoping against hope that the agony would fade. But it hadn’t, and somewhere between dinner and dessert, it had become unbearable.
Judy tried to make her feel as comfortable as possible, as the aroma of fresh coffee drifted from the kitchen. And boterkoek! They were having freshly baked Dutch butter cake with their coffee. She listened to the conversation in the next room, much more subdued now, along with the clink of cups on saucers.
Well.
It couldn’t be helped.
This attack — this was a first. Not the first instance of the distressing pain, but the first time it had absolutely overtaken her, putting her on her back. Over the last few months, she had done her best to smile through it and to push ahead with her tasks and her schedule. But not anymore. Uncomfortable had morphed into unmanageable.
She heard laughter through the wall. Was her life, as she had come to enjoy it, slipping away from her? Was it all a beautiful picture she could no longer hold on to? Would the pain swallow her up completely?
Joni had certainly known discomfort before. No one was ever really “comfortable” with paralysis. Quadriplegia was an unnatural life to begin with, as the body sought to compensate for and cope with the innumerable domino effects of being physically immobilized. In that year, however, thirty years after the shallow-water dive that broke her neck, Joni found herself facing a new adversary, one seemingly as vicious and unrelenting as her disability.
Back from the Netherlands, Ken declared all-out war on this frightening new attack on his wife, consulting doctor after doctor. What was it? What had happened to her? Was it arthritis? A broken bone? Was it organ related? They did blood panels, bone scans, and MRIs, trying to track down the source. At one point, they became convinced it was Joni’s gallbladder, which, if true, would have presented an easy solution. But her gallbladder had checked out just fine, and it was evident there wasn’t going to be an easy solution. During the flurry of medical evaluations, their depression had lifted a little — lifted because
they were doing something, or at least trying to do something. It had become almost a welcome distraction from the dull, daily routines of her disability.
But when no answers came, when no causes presented themselves, when the pain kept grinding on and on, both of them were crestfallen.
As the weeks and months slipped by, everyone around Joni realized she had entered some incomprehensible new phase of disability. She twitched and squirmed more in her chair, abruptly excused herself in the middle of meetings, and went suddenly pale in conversations, needing to retreat to her inner office where Judy and one of her coworkers could help her lie down or bring her a pain pill.
Raising funds for disability ministry at the Cal State track
We’re engaged.
Doors swing open, and she’s ready to wheel down the aisle.
Presenting Mr. and Mrs. Ken Tada!
Kyoko, Ken’s mom … Takeo, his dad
A warm wedding-day moment with Ken’s dad
Our wedding day — a day of celebration and thanksgiving!
Champagne-custard cake — a favorite
Lindy and John, parents of the bride
Prayers for freedom go up as the Berlin Wall comes down.
Touring Red Square before Billy Graham’s crusade
After Joni shared her testimony, thousands surged forward in response to Mr. Graham’s invitation to receive Jesus (10,000 were standing outside the Lenin Stadium, unable to get in).
Speaking in a Russian church? Wear a babushka!
Judy Butler positions Joni at an interview for Billy Graham’s Moscow crusade.
The first quadriplegic to ever crest the Great Wall of China? Why not?!
Joni & Ken Page 9