The Constant Distraction: Living with Chronic Pain
The Constant Distraction
Living with Chronic Pain
Everyone suffers. While it comes in different ways and forms, we all suffer sometime. Like a splinter we cannot remove, pain screams for our attention, often bringing life to a halt and demanding our complete attention. It is the constant distraction.
Pain is produced by countless injuries. Broken bones, broken relationships, lost love, divorce, cancer, children who break our hearts, children with diseases, depression, lawsuits, injustices, abuse, neglect, loneliness, death of a loved one, death of a dream, violent encounters—any kind of loss can be a “pain generator.”
I am amazed by others who deal with pain in remarkable ways. One precious friend deals with trigeminal nerve pain that leaves her in such intractable agony that she cannot get out of bed. Simple routines, such as moving to and from the bathroom, leave her with excruciating pain. Light, sound, or touch can amplify her already incomprehensible pain levels. Excellent physicians have thrown every form of analgesic, neuropathic, opioid, and other medication at her. Nothing helps. So she lives in a darkened room, occasionally tapping out emails and other messages as she can. She never complains. Her compassion drips off the screen. Her love for Christ permeates her words. Her outlook is nothing short of otherworldly.
Years ago, my wife Cindy and I were able to take this woman and her husband to dinner. It was the first time she had been out for several months. I asked her, “How do you do it?” She replied, “I am in a dark tunnel with three things: pain, God, and me. I do not want to be any place else.”
As much as I want to be like her, I am not.
It has taken me several years to understand that we all deal with pain differently. A former mentor and retired psychologist once said to me, “You know, everyone’s fingerprints are unique. Even all our ten digits are unique. So why do we try so hard to find some uniformity in how unique people respond to anything?” Perhaps the key in the midst of this horrible, wonderful journey is knowing who Christ is and who we are and not pretending to be super-spiritual saints. I give you permission to not be a “super Christian.”
Candidly, I hate being defined by pain. Close friends and well-intentioned acquaintances greet me by asking, “How’s your back?” Having come up with a variety of responses, I say things like, “It’s there,” or “As ornery as this old depraved person.” If time permits—and if I’m in good form—I may tell a favorite anecdote of mine about a celebrity who when asked what it was like to turn eighty retorted, “I’m decomposing.” And another dear man commented on his ninety-second birthday by observing, “What doesn’t hurt, doesn’t work.” These responses, of course, can be deflecting and insincere—but perhaps there is a time for them. Most of the time, I simply do not want to talk about my pain.
We must appreciate and acknowledge people who are concerned about us. Still, we would often prefer to talk about the sunrise, our children or grandchildren, a great restaurant, or a current event. But the constant distraction never rests.
To provide some context, I developed sharp hip pain in 1999. Prior to that time, I had been an active forty-something, a fine specimen of the male species who played racquetball, was an obsessive yard work perfectionist, had immaculately detailed cars, and could do most any car, home, or appliance repair. There was a certain sense of self-sufficiency, even pride, in being “that man” who could do it all. As petty as it sounds, I am no longer “that man” and feel as if I’ve lost a big piece of who I was. It is still sad.
It took about six months of tests to learn that my pain stemmed from lower back issues. For the uninitiated, back pain falls into two general categories: musculoskeletal and/or nerve pain. It is difficult to diagnose accurately the precise causes of chronic back pain. Physicians have their own diagnostic routines for the everyday, ordinary “I threw out my back” patient. When those do not work, they send you for tests. Lots of tests. It takes time to get those tests. It takes more time for the tests to be read and then for you to follow up with your primary doctor—and all the while, you are in agony. In my case, I was finally diagnosed with degenerative disc disease, a broad diagnosis for a myriad of spine, nerve, and disc-related problems.
Treatments for this condition vary widely, and results are complicated. Since 1999 and four back surgeries later, my days are filled with constant pain. Mind you, I am completely thankful for the doctors and neurosurgeons who have helped me. But in my world, “degenerative” is the operative word. For over two years, I took massive doses of opioids, muscle relaxants, and neuropathic medications and was treated with dozens of spinal injections. For two years I was not permitted to drive. I lost weight. My communication could be confusing. I lived in a medicated fog and in chronic pain (I often call pain medications “diversion therapy”). In God’s great kindness, I did not abuse these powerful medications but came to a point where my mental ability was so affected—and they were not helping reduce pain anyway—that I had to get off them. However, getting off is a slow and difficult process. Again in God’s great kindness, I had the care of a remarkable physician who knew how to wean me off the narcotics. I can now function with a cocktail of non-narcotic medications each day. While I still hate taking the drugs, I’ve conceded that this is my lot.
Forgive the oversimplification, but it seems that those of us who are disabled, live with chronic pain, fight a debilitating disease, or struggle with depression or emotional pain generally fall into two categories: overly needy or loners. Both are understandable but also undesirable. As much as we might prefer to cling to or withdraw from other people, we have to work hard to move out of an “all about me” orientation and learn how to make other people’s concerns our own. This hard work cannot be done in our own strength.
Any of us who teach or speak publicly find ourselves in a quandary. “Authenticity” and “transparency” are highly valued these days. If you want to be heard, you have to be real. The knife-edge balance is being transparent without being naked, being authentic without being egotistical. So you will die a little in telling about yourself. If you choose to do so, it opens you up to an endless stream of people who want to help and others who need help. And then there are the well-intentioned folks who “have a friend,” “read an article,” or “saw something on the Internet” that is sure to “fix” your problem. In my “holy cynicism,” I now call these snake-oil remedies: “This ‘thing’ cured my friend’s back problems and now he’s running triathlons!” Early on in people’s journeys through disability and pain, it is common to try lots of alternative treatments.
Practical Steps
While there are a whole host of potential remedies on offer, there is no single medication, treatment, or therapy that addresses every person’s experience of pain. However, there are some basic, general things that are helpful. Let me suggest some very pragmatic steps to living with chronic pain, a disability, or an illness:
• Begin dealing with your Savior. Maturity is being willing to sift our hearts and confess our sins. This is not some spiritual hat trick—the idea that if we confess, then Jesus will automatically heal. Yet does it not make good spiritual sense to at least ask, “Dear Lord, what sin have I failed to confess, own, acknowledge, and (if need be) make restitution for?” Own your sin. Confess it. Restore fellowship. Mending your relationship with Jesus and others is a great healing, even while experiencing pain.
• Become your own advocate. This can be hard whether you tend to be needy or a loner. If there is one broken-record message I tell myself and others, it is “just do the next thing.” Most every morning I have to tell myself, “Michael, get out of bed. Get both feet squarely on the floor. Go take a shower. Shave.” It can be overwhelming for me, as mornings are often the hardest. For you, perhaps the “next thing” is to call the doctor. Make the appointment. Try a new therapy. Change doctors. Do a chore. Do another one. Call the insurance company. Dealing with healthcare providers can be a full-time job. Many of us have a file cabinet of medical paperwork, MRIs, X-rays, CT scans, and the never-ending insurance claim issues. It gives me cold sweats just thinking about calling my health insurance provider. But here’s hard truth: No one can help you if you do not take the initiative.
• Be the nicest patient your health care provider has seen that day. I’ve created my own health care plan. It’s called “being a Christian patient.” It is being the nicest patient of the day. Take two dozen donuts or some flowers to the doctor’s office. Learn the names of the staff. Dress nicely for the appointment. Smile. Look the staff in their eyes. Ask about their day, their family, or if it’s been a hard week. Thank them for taking your vitals. The staff teams who check you in, take your vitals, update your records, and ask the same questions again and again are real people with their own hurts and disappointments. If they seem short, uncaring, or don’t seem to be listening, some compassion may go a long way. Importantly, this does not mean you should ignore poor care or stay with a healthcare provider who is not helping you. There is no nobility in staying with a doctor who is not helping. It does mean, however, that we should make an effort to intentionally put ourselves “in their shoes.” We may be surprised at what we find.
• Become a student of health in the areas that affect you. With the advent of the Internet, we have no excuse for not learning about our conditions. Of course, you must find reliable sites that offer good information, but then read, read, and read some more. Write down questions for your doctor, and don’t let yourself be intimidated by big medical words. Do the work to make sure you understand things as clearly as possible. I marvel at patients who will undergo major procedures or even surgery when the first doctor they visit recommends something. You live with the results—not the doctor. I often tell my physicians, “I know you are the expert, and I’m not, but what do you think about “blank” procedure? What if I wait? Are there other things to consider?” Again, you want to continue being the nicest person, but you can ask the tough questions in a nice way. In my experience, my health care providers appreciate the fact that I want to learn. In fact, one doctor told me, “You’re the ‘one-percent’ patient I love to see!”
• Try one treatment at a time. Perhaps not only one, but the point here is that too many of us dive into multiple treatments, multiple medications, and multiple therapies, with no idea what the contraindications could be. Patients who are on traditional medications under a physician’s care may mix acupuncture, chiropractic, physical therapy, alternative supplements, and non-traditional medicine, and can actually confuse their bodies into a mess. In my research into pharmacological interactions, I’ve concluded that if a given medication does not help within a certain time frame, it is not one day “magically” going to work. Eliminating one medication at a time for a period of time, with your primary doctor’s supervision, is good medicine.
• Be willing to try different medications. It is common for patients to either be unwilling to try certain medications or, at the other extreme, to try every available medication. Be careful how many medications and supplements you are taking simultaneously, but in general, if one pain medication is not working, try something else. Many people have a hard time taking certain medications. Remember, health care providers have a “toolbox” of go-to prescriptions that most of their patients tolerate. I’ve seen patients react to medications the first few times they tried it and then find benefit, while others simply cannot tolerate some drugs at all. Again, learn about these medicines. Take them properly: with food, without food, at bedtime, in the morning; find out which medications can or cannot be broken in half. You must be your own advocate.
Spiritual Lessons
Moving from the practical to the theological, let me offer some spiritual lessons I am still learning. One caveat I have embraced is that learning a spiritual lesson is not somehow the “cure-all” for our pain, disease, hurt, or disability. That said, perhaps these spiritual lessons will cure us, though not in our mortal flesh. With apologies to Luther for the paraphrase, “We don’t have to get better to be well.”
• God remains sovereign. Cindy and I are blessed with four remarkable children. In God’s matchless grace, Cindy has been there and never faltered. She took the “for better, for worse, in sickness and in health” part of our marriage vows seriously. I am no longer the man she married. Our children are adults now, but the two older children had a very different father than the two younger ones. My two older children had a dad who could do any physical activity, was on the sidelines of their sports events and in the audience for their musicals, tried to “play catch” and horse around with them. But sadly, my two younger children did not know that dad. They knew the “daddy is in pain” and “daddy cannot come to your game” and “don’t jump on daddy, you’ll hurt him!” dad. And, bless their hearts, it wounded them deeply. The older children had a much “better” daddy than the younger ones. Or did they? From my vantage point, and from that of the older children, the “better daddy” was all we knew. But, from the younger children’s perspective, the “in pain daddy” was all they knew too. Certainly, I wish I could have been the active, engaged, “all-in” daddy for all of my kids, but here’s the question: Was God still sovereign? This is not meant to dodge the issue, but rather to be a recalibration of my theology. I have come to the conclusion that my children’s stories and experiences of me are just different, not better or worse. In some way I cannot explain, God’s kind, sovereign hand was involved in their lives, even the younger ones who missed the “all-in” daddy. And, as I remind myself often, God loves them far more than I do.
• God is still using you. How are we useful in our disability or pain? What if I am limited to using a wheelchair or am even bedridden? What if I lose my sight? What if my pain never goes away? How could God use me? If we can embrace the view that we are not defined by our disability, pain, or disease, we can minister to others. A major turning point is not only refusing to be defined by our situation, but also seeing others with hearts of compassion and knowing that we can encourage them because of our pain. I call it “imperceptible influence.” You and I have no idea how we are being used by Christ. Simply pressing on, staying in the Word, choosing not to whine, learning to have a healthy sense of humor in the midst of trials, affirming others in their gifting, and trying to encourage those who struggle in similar situations are ways Christ works through us. Your faithfulness to him and your compassion for others may never be graded in this life, but don’t underestimate the possibility that God is using you and that you have that imperceptible influence. It seems to me that this is much like faith: “the evidence of things we cannot see” ().
• Linger long in God’s presence. If there is one major benefit of a disability, disease, or chronic illness that keeps us from functioning in a full-time world, it is that we have been given time to linger long in God’s presence. The grand reality is that we are walking close to Christ in our struggles. Many of us drift out of fellowship with God and others when we are hurting. I understand that temptation. In some twisted way, we think, God has not done well by me, so I’ll take my toys and go home. But we have nowhere to go. It reminds me of Peter’s words in : “Lord, to whom would we go? You have the words that give eternal life.” Boiling down the Christian life to its essentials, it seems to me we need three things to live for him: God’s Word, God’s Spirit, and God’s people. The authority and confidence of truth is found only in Scripture. One of my mentors called the Bible “the mind of God in print.” We cannot know what we have not read. Quite simply, there is no growth apart from a constant diet of his Word. God’s Spirit seems either to be overlooked or over-credited. Many believers would do well to study and learn about the person of the Holy Spirit, what he does and does not do. It is equally wrong to either completely ignore him or attribute everything to him (under the guise of “God led me” or “God told me” language). Lastly, God’s people—a community of authentic, growing believers—is also needed for us to grow. We were meant to be part of the body of Christ. You and I need one another.
A Theology of Pain, Disappointment, and Disability
Finally, develop your own theology of pain, disappointment, and disability. One passage that has carried me along the way is , where Paul tells us that we are comforted by God “in all our troubles so that we can comfort others.” This rates as one of the most helpful biblical texts for me. And while I do not comprehend it all, I relish the progression of Paul’s language. It tells me there can be a point to our suffering. Add to this Paul’s listing of some of the forms of suffering he endured () and you, like me, may have a change of heart and perspective.
First Peter is addressed to believers who were suffering for Christ’s sake. Caution is called for here in that we cannot assume that our suffering is always for Christ’s sake, but sometimes we may indeed suffer for Christ. In this case, we might typically think of a persecuted or martyred missionary. But a careful study of 1 Peter also reveals that our suffering can be self-inflicted due to sin. Ultimately, whether suffering comes our way as a consequence of our own sin, as the consequence of being fallen creatures in a fallen context, or for other, unknown reasons, Peter makes it clear that the most important thing is that we live by faith in and through suffering. For example, we’re told in that God called us to do good even if we suffer, just as Christ suffered for us.
Moving Beyond the Distraction
As you and I follow Jesus, we are not promised exemption from the wilderness (), the fire (), the storm (), or the pain. But Jesus has promised to be with us. And in the end, that is the focus that promises to move us beyond the distraction.