The Grief Club: The Secret to Getting
Through All Kinds of Change
by Melody Beattie.
Courtesy of Hazelden Publishing
Changing Bad into Betterment:
When We Lose Our Health
Have you ever had a problem sneak up on you, sneak up on you so subtly and insidiously that you honestly did not see until months or even years after the problem started that it was ruling, dominating, and ruining your life? Not only your life—the problem was affecting your entire family, and you didn’t see that either? How can that happen? Easy. Perhaps you wake up each day thinking, Today is the day I’m going to feel better. Or, Today is the day I’m going to the doctor, and he’s going to cure me. He’ll solve this problem, and I’ll get my life back, just like it used to be. Only you don’t. You wake up, and day after day, then month after month, you find yourself living in pain. The pain gets worse. You explore one option after another until the lights finally go on and you see—I haven’t been myself, had a pain-free day, for months or years! Where did my life go, and how did this happen? You look around and see other people living their lives and going merrily on their way, and you’re not. You may be confined to your home, bed, couch, or wheelchair. Maybe you’re still out there trying to live your life, but it’s not easy.
While this may not be much comfort, you aren’t alone. Please listen. You may feel frustrated—even outraged—but you aren’t being punished by God. There is within you a still, small voice that you can trust. It will guide you through this. You can trust what you’re going through even if it looks and feels like you can’t.
Most of us have heard about the wounded healer theory. We get a horrible problem. We don’t know why it’s happening to us and not to some jerk that deserves it (not us). Then we struggle through the problem and find some answers, and just as subtly as the problem sneaked up and ruined our lives, we find ourselves being organically used by life to help others, and we’re able to give this help because we had the problem. While it looked like we were being (unjustly) tortured, we were actually in school. Life was preparing us to be of service in ways that we couldn’t imagine when we were lying on our couch, begging God to take us out if He couldn’t or wouldn’t heal us.
Years ago, I attended a weekend writer’s conference. It was only two days (and only during daytime hours) that I was entrusting the care of my children to their father. I worried the entire time. Was he drinking? Was he actually taking care of them? Well, at least they were old enough to fend for themselves. And he was a chemical dependency counselor! Me? I couldn’t get a job as a counselor. He was being written up in the newspapers, being bowed to and revered, and the man was a great counselor. He just couldn’t stop drinking.
While I’m at this writing workshop, the teacher is telling us to write what we know, and I’m obsessing—I cannot stop thinking about my husband and his drinking. I’m scrawling in my notebook that I can’t stand this. Is he drinking? I cannot take this marriage any longer. God what am I supposed to do? Simultaneously, I was wondering what the instructor was talking about when he said, “Write what you know.” I was too close—the proverbial so close to the trees I could not see the forest. I was so close to this mess of a life I was living that I couldn’t see the story in it, see the value in it, or see that I would come out the other end and this bad thing I was going through would someday not only be resolved, it would be used for the betterment of humankind. Maybe it was good that I couldn’t see that. When we know or even think we know an outcome, we start controlling, trying to make it happen. Then we botch things. We start thinking we have to make the success of our work happen or that we made it happen in the first place instead of realizing that life is doing its work through us, and all we need to do is relax, be present, keep our intentions pure, get out of the way, let life have its way with us, and things will work out fine.
Some of us may use our pain to help others vocationally, some as unpaid service workers. Some of us may be used as unsuspecting examples. After my son died, I watched people open their hearts and value the moments they had with their children so much more because they realized what gifts these moments are. I’ve also run into people who aren’t out of the woods with their problem yet and are proclaiming how they’ve got to write a book or write a movie and they know it’s God’s will, and usually that’s when life doesn’t unfold the way people expect. It’s usually the unsuspecting culprits who get sucker-punched by life—who barely know what hit them—who find themselves, to their surprise and the astonishment of families and friends, not only coming through the problem but having the problem turned into their new vocation—one that genuinely helps other people who are where they’ve been. We become paid or voluntary workers who welcome people to the club, show them they’re not alone, calm their fears, and help them find their way around this new terrain.
That’s what this story is about.
You can tell a lot about someone by the pictures in his home. A walk through Mark’s house shows a six-foot, two-and-a-half-inch man freefalling from a hot-air balloon, arms outstretched, with a huge smile on his face. Mark skydived. He played basketball, tennis, volleyball, and soccer. He rock climbed. He ran a computer consulting business that made him as much as twelve grand a month and allowed his wife, Diane, to be a stay-at-home mom for eighteen years. Mark wasn’t smiling only because he was exhilarated from jumping out of a hot-air balloon on a gorgeous day in California’s Temecula Valley. He smiled because he had a loving wife, had three wonderful children, and was living life the way it should be lived—to the fullest.
Occasionally he’d be slowed by being “twisted up.” Many people have a favorite phrase to describe a back problem. “My back went out,” they might say. It’s not technical, but it describes how it feels. In the early eighties, Mark might have been twisted up after Sunday volleyball, but he’d be standing tall by Tuesday tennis. By the late eighties, he didn’t untwist as quickly. He went to a doctor and got bad news. Two discs in his lower back had moderate bulges. “No more sports,” the doctor said. “Give it all up.”
What Mark heard was, “Life in prison with no possibility of parole.” So Mark did what any passionate skydiving, rock-climbing, soccer- and basketball-playing enthusiast would. He fired his doctor. Then he hired another doctor, an orthopedic surgeon, who skydived. “You can stop doing everything, and your discs will still go bad,” his orthopedic surgeon said. “Go live your life, but be smart. If what you’re doing is causing problems, stop. Stay fit. Enjoy life. None of us knows what the future will bring, so go live!”
Jumping sports like basketball and volleyball hurt, so Mark eliminated them. For the next ten years, he lived smart. Until the day he was exiting the 405. Until the day the two underinsured kids in the Acura didn’t know that the cars in the right lane on the exit ramp weren’t moving and came roaring around blindly from the left at forty miles per hour—ramming into the back of Mark’s BMW and slamming him into the car in front of him. Mark got out and assessed the damage. Minimal, he thought. His back felt stiff. The dented left fender scraped the tire, but he could still drive away from the accident scene. What Mark didn’t understand until three body shops and two back surgeries later was that the frame on his car had been irreparably damaged, and so had his back. Many days fade unnoticed, but some we remember. The day Mark (Mr. Active) Mintzer remembers is August 19, 1997—the day the accident he thought was minor totaled his car and his life.
Mark went from taking an occasional pain pill to being a full-time pain management patient. He went from being twisted up a few times a year to having his tall frame contorted like the grotesquely twisted purple monster figure in the kids’ toy chest. He stopped working. His income dropped to a $1,100 a month disability check. Sunday soccer with the children eventually disappeared. Mark tried skydiving twice after the accident, but it hurt so much he stopped. Mark thought he was doing right by playing soccer whenever he could. It was the only activity he could do at least sometimes without pain. What he didn’t know was that following the advice to live smart and stay active would be partially why Mark lost hundreds of thousands of dollars in his accident lawsuit.
The judge awarded Mark $25,000, enough to pay attorney’s fees but not enough to touch medical bills or compensate for lost income. A picture of Mark playing soccer with the children—doesn’t that prove he’s not in pain? Testimony that Mark was a skydiver—can those crazy skydivers be trusted? A form where Mark listed a neighbor as an emergency contact was even twisted to present Mark as a crazy skydiver who would do anything for a thrill including have an affair with a neighbor. At arbitration Mark testified for thirty minutes. The insurance company’s attorney grilled Mark for six hours, warping his testimony and presenting lies as fact. Mark thought he’d have a chance to set the record straight when his attorney examined him, but Mark’s attorney responded by asking Mark only one question. That’s it? Mark thought. “Why didn’t you do something?” Mark demanded on the way out the door. “Why didn’t you make sure the judge understood my case?” His attorney responded, “Not enough time. I’ve got to be in court first thing tomorrow. Got a ton of work to do. Bye.”
Mark simmered, even wrote a letter to the judge, but the judge didn’t respond. Nothing’s fair. Easy to say to someone else. It feels different when it happens to us.
Over the years following the accident, a problem Mark thought was minor gradually dominated his life. As Mark became housebound, his wife, Diane, dusted off her nursing degree and went back to work. Years later, when Mark discovered a letter Diane wrote to their sixteen-year-old daughter, he learned how frightened his brave wife really felt. She had reached her breaking point and didn’t know how much more she could take. Mark wasn’t the only one in pain. His entire family was suffering too.
“I’m burned out and tired,” Diane wrote. “It’s not easy to take care of sick people for twelve hours and then come home to someone in pain. I wish you would decide to get along with Dad. You need to show him some respect and compassion. . . . He loves you. He would love to teach you to drive. We need another driver. I don’t know how much longer he’ll be able to drive. (Don’t tell him I said that.) He’s still holding on to dreams of playing soccer, but I think he’ll be lucky if he walks again. . . . I’m sorry I’m grouchy and tired, but I am. Work is stressful. At least it’s an escape to a different world. I’m too busy dealing with other people’s problems to dwell on my own. I can imagine how Dad feels not being able to support his family. When I realized that Dad wasn’t going to be able to return to work, I had an awful feeling. How can I support us? Will anyone hire me? Do I still have enough knowledge to be a nurse? I have learned and grown through all of this. Even if Dad could go back to work today, I would continue to work. I never want to feel like I can’t support myself again. I have given you my love and support for years and have many beautiful memories…I need your love and support now.”
It’s eye- and heart-opening to see how each family member is affected when one person gets sick. Each person’s life becomes altered. Everyone may feel alone and misunderstood. The non-ill family members need support systems too.
Many people don’t believe in back problems until they happen to them. Many people believe that they can take a medical problem to a doctor and the doctor will reach into his bag of tricks and fix it. You’re sick, you go to the doctor, the doctor does something, and you get better. Right? Two surgeries fixed Mark’s leg pain but didn’t touch the lower back pain. Damage to his discs escalated from moderate to severe. One doctor refused to do fusion surgery, saying that the success rate was only fifty-fifty. Another doctor guaranteed Mark a 90 percent success rate from fusion surgery, claiming he never made anyone worse. Mark’s plumber was lying on Mark’s kitchen floor working under the sink when Mark told him that he’d finally found a doctor who could fix him. The plumber asked the doctor’s name. When Mark told him, the plumber sat up so fast he nearly clunked his head.
“That’s the doctor who ruined my wife’s back!” the plumber said.
That’s when Mark saw the light. “We think doctors are all-knowing. We think they have something special and they’re going to fix us,” he said in one interview. “We have to do our homework and take responsibility for our bodies and the course of our medical care. Doctors can’t always tell us all our options. One doctor has a hammer, so everything looks like a nail. The next one has a screwdriver, so everything looks like a screw. If your problem is like a lock, you need a doctor with a key.”
We shouldn’t hand our lives over to someone else. We need to take charge and understand for ourselves. We can consult specialists, but ultimately we live with the choices we make. We deserve to be fully informed and make decisions that are right for us.
Mark walked away from the accident until he couldn’t walk anymore. He walked straight into spinal hell. Nobody—not the doctors, his friends, the judge, his attorney, even his loving wife—understood. Mark was about to learn that while life isn’t always fair, it has a plan. He began doing research on the Internet. On a forum he met other people living in spinal hell. They shared information—which doctors to see, whom to avoid, the latest technology, possible complications. Most important, the people in the Internet spine community understood. Mark got welcomed to the I’ve Lost My Life Because My Back Doesn’t Work and My Doctor Can’t Fix Me Club.
First Mark talked to the Internet gurus. Then he became one. Although he didn’t know it yet, he was being groomed for his next career—walking other people through the spinal hell that he walked through alone. Mark heard about a new surgery called ADR (artificial disc replacement). Damaged discs are removed instead of fused, and artificial discs are inserted in their place. While fusion leaves people stiff, the artificial discs restore mobility. They work similar to artificial hips or knees. Although long-term findings aren’t available, the probability of success with ADR is higher than with fusion. Doctors have been performing ADR in Germany since 1989. In 2002, the surgery was still under clinical study in the United States on its way to becoming FDA approved.
Mark heard about ADR surgery two years before he underwent it. Because he heard bad reports, Mark first dismissed it as an option. A woman who was supposedly an Internet guru said they were putting in the discs in Germany and taking them out in France. But when Mark pressed her for details about why the discs weren’t a good choice, the woman couldn’t back up her story. Mark began aggressively researching ADR, and what he discovered excited him. It didn’t match what the woman said. They were putting in the discs in Germany, and many patients who had been in wheelchairs were walking from the surgery room to the recovery room—some of them walking for the first time in years. Mark learned his second lesson: distinguish rumor from fact.
The advantages of the Internet are many, but don’t take everything people say as fact. Make them say who, what, where, when, how, and why, then check out their answers. Investigate. Sometimes our money is at stake. Sometimes it’s our lives. Often when pushed for sources, people either say they don’t know or they heard it from someone who heard it from someone else. Spreading rumors is an easy way to hurt other people and ourselves.
Mark wanted to know everything about his options, this surgery, the discs, what could go right, what could go wrong. He made e-mail contact with leading international ADR surgeons. Despite the risks, Mark decided ADR was for him. Because the FDA allowed U.S. surgeons to replace only one disc and Mark needed two, Mark and Diane flew overseas. Insurance wouldn’t pay, so Mark refinanced his California home to pay for his new back. In September 2002 in Munich, a doctor put two artificial discs in Mark’s lower back. But Mark wasn’t one of the people who walked from surgery to the recovery room. “My recovery was hard,” Mark said. “I hurt.”
Two days before surgery, Mark watched what he describes as an unbelievable UEFA soccer game at Munich’s Olympic Stadium. A self-proclaimed goalkeeper junkie, Mark bought the goalie’s jersey and put it on. Watching the last half of the game, he wondered, Is this a sign? Is it possible that someday I’ll play soccer again? He hadn’t completely lost hope, and now hope was close to becoming real. But a week later, after the surgery and back at the hotel, Mark collapsed into Diane’s arms. “Will I ever know a day without pain?” he asked. Three years later, he still chokes remembering how he felt.
But six weeks after surgery, Mark was off all pain medication for the first time in three years. Three weeks later, he took his last antidepressant. Mark didn’t look back. “I could feel the life sucking back into me,” Mark said. He’s surprised he didn’t become addicted to opiates after taking them so long. He says he undermedicated himself, and Diane vouches for that. Leading pain-management and addiction specialists insist that even when high doses of opiates are used properly to treat intractable pain, opiates aren’t the enemy. “Chronic pain damages organs and the body. Pain is the enemy,” says Dr. Forest Tennant. “Medication is the friend.”
A few months later, Mark began doing more than playing soccer again. He got a new life. Besides becoming physically active, Mark found himself in the midst of doctors and the world of ADR. He became a cause célèbre at one spine convention. Instead of data beamed from an overhead projector, here was a walking, talking, scuba-diving, skiing, soccer-playing, pain-free human being who had successfully undergone a two-level ADR. Mark (Mr. Active) Mintzer was back untwisted. The discs worked. The physicians wanted to hear what he had to say. So did the people still trapped in spinal hell.
Mark first met Melanie from Canada on the Internet forums. After five failed spine surgeries and nineteen years of pain medication, she was diagnosed as hopeless with “failed back surgery syndrome.” The doctors told her to go home, take her pain pills, and deal with it as best she could. Melanie had frequent bouts of urinary incontinence and difficulty walking. She was housebound, in unrelenting pain. The medical system said there was nothing more any doctor could do, but Mark wasn’t willing to give up. He wanted to help. Mark began badgering doctors on Melanie’s behalf. At first the American spine doctors wouldn’t see her, but with Mark’s persistence, Melanie got an appointment and a new diagnosis. It turned out she wasn’t hopeless. To her and the medical community’s astonishment, Melanie was treatable. Melanie became Mark’s first client. Eighteen months after meeting Mark, Melanie finally underwent ADR. Instead of getting diapers and a wheelchair, she got a new life. She’s now medication-free, working, running, lifting, and stooping, even dancing the Irish jig. She says it’s thanks to her surgeon and Mark’s persistent, knowledgeable help.
Eventually, assisting spine patients became so time-consuming that Mark had to either find a way to make a living doing it or stop. In 2004, Mark formed Global Patient Network in Fountain Valley, California. Since then, he’s helped 250 spine clients. He puts X-rays, MRIs, and medical profiles in a secure site online at www.globalpatientnetwork.com. This allows people to shop for doctors internationally and domestically, for not much money.
“Every day I’m contacted by people who are confused and frightened,” Mark says. “Many of them don’t understand what they’re facing. They either can’t work or are barely functioning. Their sex life is gone. Their friends, families, co-workers, and often their medical teams don’t understand what they’re going through. They get conflicting opinions from doctors they trust. Sometimes they’re not told all their options or the information they receive is incorrect.”
Mark helps people manage their situations and make informed decisions. He arranges spine symposiums where patients meet doctors. Mark has a direct line to top spine surgeons around the world. Sometimes he accompanies people to appointments and surgeries, especially overseas surgeries, so they don’t have to go alone.
It’s not uncommon for Mark to hang up the phone after talking to a spine patient, then sit and cry. Sometimes it’s because he knows—often before the patient—that they have few options and little hope. Sometimes it’s because he just heard, “Thank you. I can pick up my grandchild without even thinking about it.” “Thank you. I just went out on my husband’s boat for the first time.” “I can tie my own shoelaces.” Or “I’m off medication for the first time in nineteen years.”
It’s not the shoelaces, the activities, or the pain meds that bring tears to his eyes. The difference between having a life and not having a life is what a wounded healer understands.
It’s not easy to have faith when we’re burning in the fire. We’re not all going to get our miracles. More times than not, the miracle we get is life as-is and no guarantees. Plain faith, the kind most of us have been schooled in, applies to tomorrow. It says, Things are going to be okay—if and when we get our happy ending. When we talk to someone who has been where we are, we get the courage to have radical faith—the extraordinary kind. It’s powerful when somebody looks us in the eye and tells us we can do it and we are okay, because he or she has been where we’re at. Our bodies respond right down to our cells. There’s enough disaster and pain in our world. Make a contribution. Give people some hope.
Annually, the lives of Americans are disrupted by
40 million headaches
36 million back pains
24 million muscle pains
20 million neck pains
1,038 million workdays are lost to back pain.
638 million workdays are lost to headaches.
34 million Americans suffer annually from intractable pain.
31 million Americans have back pain at any given time.
One-half of all working Americans admit to back symptoms each year.
One-third of all Americans over 18 sought professional help for a back problem over a five-year period.
The cost of this back care is an estimated $50 billion annually.
Sources: American Medical Association, National Foundation for the Treatment of Pain, and American Chiropractic Association
1. Are you going through a problem now and delegating the responsibility for solving that problem to someone else? Yes, we do need to trust the wisdom of physicians and other skilled personnel. But we also need to learn to gather information, sort through it, and then take responsibility for ourselves. Few problems magically become solved from outside of ourselves; life requires our cooperation and participation, even when that involves healing our bodies. Minimally, we need to participate in any decision affecting our lives. If the problem is too technical or beyond our comprehension, then we need to locate an advocate, someone to help us understand. We have a right to know, and we have the right to ask.
When I was diagnosed with degenerative disc disease, I didn’t know I had any options. My doctor hadn’t heard of ADR. Essentially I was told that it sucks to be me—by no means a technical prognosis, but an accurate one according to my physician. I researched and discovered the surgery that ultimately fixed the problem. Then I researched resources with the help of Mark Mintzer and Global Patient Network. Turn your problem into a research project. There are many resources. We can use the Internet—but remember to check facts. Don’t forget about the library. The books are free, and most librarians are happy to help. Don’t overlook all the magazines at the library too—including back issues. (Many of these magazines and newspapers are also archived online.)We can find groups for almost every problem that exists. Look in the yellow pages. Look on the bulletin board at your hospital. Pick up newsletters. Once I begin a dedicated search, I usually find that information begins coming to me. The mystery begins unraveling. Search for information, but be careful whom you trust. Ask for references, then check them. Bounce your information off people as a way of confirming that you’re on track. Often by talking to other people about what we’re learning, we help integrate information so that we really understand. Research until you become well informed. Participate in your life.
2. What problem is bothering or hurting you most right now? Have you found your community of peers—your club? Make it a project to find three people who have been where you are. Ask them if they’ll talk to you and share their experience and hope. Or, if you’re on the other side of your problem, find three people who are now where you’ve been and share your experience and hope with them.
A friend and colleague was at an airport waiting for a flight when she got a phone call from a woman she’d met on the Internet. My friend is a bereaved parent. Her daughter died after a brave struggle with illness. She watched her daughter get sick; she watched her daughter’s death. The woman calling asked my friend to describe in detail how her daughter died and what the last few hours were like so she’d know what to expect, because her child was dying soon. “I sat down at the airport and went through the whole thing with this woman,” my friend said. “I was crying the entire time. I know she had no idea how painful this was for me, but I did it,” she said. “When the woman called me days later, after her child died, she thanked me and said how enormously helpful our conversation had been. ”My friend knows how important it is to be with people who really get us. She wants to be there for people the way people were there for her.
People who haven’t been through what we’re going through don’t understand. They try to generalize, and it’s not the same. “We can model for people that they can have this problem and still keep going,” my friend said. That’s what wounded healers do. It will happen naturally. We’ll be going about the business of our lives and someone will pop into our path—someone who’s going through a problem we had. Or we’ll wake up one day and discover that we’re working in a field where we’re using what we’ve gone through to help other people; we’re working to make this a better world. Don’t worry about how it will happen. It will. All we need to do is be open, aware, and respond with a yes when life puts that person or opportunity in our path.
3. Are you going through a problem and not opening your eyes and heart to how the people you love are being affected? Acknowledging what our loved ones are going through and that they are being affected—saying thanks and how much we appreciate their support—can go a long way. Sometimes family members can’t be there for us. We need to figure out what we’d like from them. Then ask. It makes life easier if we don’t lock in and expect specific things from certain people if they don’t have it to give. Some of us have a hard time letting people take care of us. Maybe it’s not an imposition; helping us might make them feel good. We won’t know unless we ask.
4. Are you in unrelenting, intractable pain? You don’t have to suffer. Contact the National Foundation for the Treatment of Pain at www.paincare.org or 713-862-9332.
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