The Courage to Live

“I am not afraid to die; I am afraid to live.” A strange sentiment for a Christian.

Christians can face death confidently knowing the reality of enjoying God’s presence once they pass from this life. This theological truth produces great peace. For some, death is a gracious deliverance from terrible suffering. But where is comfort for sufferers of chronic pain if death is not imminent? How does one hang on through suffering, when letting go is not an option? What do people do when they wake each morning not afraid to die, but afraid to live?

A disease of pain

In the fall of 2010 I was diagnosed with trigeminal neuralgia. Trigeminal neuralgia, or TN, is a nerve disorder, characterized by episodes of intense pain. It is a chronic pain condition that causes extreme burning or, in my case, searing electrical shocks predominantly to the left side of my face. However, I am part of the rare class who also experience TN on the right. The excruciating jolts seldom last for more than a few seconds, but a person with TN may suffer scores of intense episodes within minutes. In the past three years I have not experienced a day, not even an hour, without pain—even with medication.

Currently few medical options treat TN. Only one offers a complete cure, microvascular decompression, which is an invasive brain procedure. In this operation the neurosurgeon enters the skull and separates the offending blood vessels from the trigeminal nerve. It is believed a compression of a blood vessel against the nerve causes the condition. While the technique boasts better than a 90 percent success rate, I awoke from surgery on the wrong side of the medical statistics, not once but three times! So I still struggle with a nerve disease triggered by the slightest touch, a breeze, or even a kiss from my wife.

A disease of fear

While there is no prize for having the greatest pain, the contractions of childbirth and kidney stones hurt less than the excruciating jolts of TN. Many have dubbed TN “the suicide disease,” for while the disease can be debilitating, it is not fatal. There is the rub: TN will not kill you; but there are times that you wish. . . . However, it does not. Like Rod, I am not afraid to die: my eternal destiny is secure. But there are times I am afraid to live. At the present moment it is not a consuming fear. However, at times fear is a close companion.

I fear the pain. Other than cluster headaches, TN is the worst pain known to medical science. My experience has proven the researchers correct. People with the affiction find it difficult to describe the pain. No metaphors or similes communicate it accurately. It hurts so bad that all one can say, through tears, is, “It hurts!” I smile when asked by medical staff at a hospital or doctor’s office, “On a scale of 1 to 10, how would you rate your pain level?” I want to say, “Are you serious? Do you understand this disease?” But I refrain, and reply, “Your chart does not go that high.”

One fears not only the intensity of the jolts, but also the seemingly randomness of them hitting. Their unpredictability does not allow the sufferer to prepare the body for the next onslaught. Once the jolt has passed, the fear is, When will the next one occur? You know the next one will come (there is always another), and you fear that the subsequent one will be as bad and maybe worse. Then there is the emotional pain: the overwhelming sense of profound sadness that this is your new normal and the realization that agonizing pain is your life.

I fear unfulfilled expectations. My life is not the same. Before, lofty dreams and expectations of an unlimited future stretched before my wife, Joy, and me. We are close to being empty nesters. Our youngest is a junior at Baptist Bible College. We looked expectantly to a new chapter in our lives. Three years ago we entered a new chapter we did not expect. Now in every decision we must factor in TN. Some activities worsen the pain: a concert, a movie, even music in a Sunday morning church service. All trigger TN—even watching TV can increase the jolts.

The expectation of a quiet night in front of the fireplace with music playing brings the concern of causing more anguish. A kiss, a certain touch can kill the promise of an intimate evening. My wife hoped that we could travel as our freedom increased. But we are tentative. “What if the TN is so terrible, and we are so far away?” “What happens if the TN worsens, and we cannot get home right away?” I have been offered a few opportunities to teach overseas, and in the past we expected to be open to those ministries. Now our dreams and expectations get filtered through the lens of TN. We realize sadly not every dream will be fulfilled.

I fear being a burden to others. I have new students who wonder why their prof cringes for a few seconds during class. Or I have to stop the lesson and explain why I cry out. I fear they will remember the painful episode they witnessed rather than Hebrew nouns! Others who witness my pain simply do not know what to say or do to bring comfort. They are uncomfortable in their impotency. I immensely dislike causing such feelings. Along with this, I fear disappointing people. Sometimes I make plans and have to cancel at the last minute because TN is simply too agonizing. I hate disappointing people, but TN gives me no choice. This, too, becomes a burden.As a husband and father, you never want to be a burden to your wife and family. Although my family has continually reassured me that this is not the case, I know my condition weighs heavily on their hearts. I reason that they have enough burdens in this world; they certainly do not need another—as a father, I should come alongside and uplift them, not add more weight to their lives.

I fear the future. There are times I fear the prospect of a future with more pain. “When will the next jolt hit?” “How severe will it be?” “Is this my future?” Although I find it difficult to grasp, there is always the chance the pain will increase. While not offering much, if any, pain relief at the moment, the medication that I am on may become less effective, or the pain may simply blow through it. The fear of the future multiplies all the rest. I fear losing any possible normalcy for the future with the present pain level. I fear losing more of myself to share with my family and friends due to the struggle. This daily fight to endure exhausts one physically and emotionally. I fear losing the freedom I have enjoyed in the past. I fear losing the ministry of teaching that I love.

Above all, I fear being unfaithful. I fear that one day God may eliminate this terrible ordeal and mercifully grant healing this side of Heaven. I fear I may look back and realize that I had been unfaithful with the trial. I would be sorrowful that if I had endured just one more minute, one more hour, one more day by His grace, I would have glorified God for the power He granted (2 Corinthians 12). Instead He may have found me accusing Him of wrongdoing, injustice, and demanding He give an account of His violent treatment toward me (Job 31:35). This is my greatest fear.

The God of strength

To deal with this torment, I have taken the words of Asaph and Paul to heart. I rehearse with Asaph that no matter the suffering, “my flesh and my heart fail; but God is the strength of my heart and my portion forever” (Psalm 73:26). Like Paul, I count on God’s power (2 Corinthians 12:9). I attempt to commit each jolt to Him and trust He will give grace to endure. While other TN sufferers trust different remedies, this is truly the only one for believers who suffer fear. God’s ministry to my heart does not take away the pain. But it chases away the fears. This does not mean there are no more tears—there are plenty of these. Our tear-soaked pillows and my wife’s damp shoulder attest to that fact. But through the sadness we experience grace, the power to endure one more day, or one more hour or even one more minute.

You will notice my article is longer than Rod’s.That is appropriate. Even the length of our articles quietly whispers our individual messages. Barring a miracle for Rod, he will, by his own admission, experience deliverance from his suffering much sooner than I will. He will be cancer free. (Although we pray that God will continue to be merciful to him and to those who love him and grant him a long and productive life and ministry.) Barring a miracle for me (and not being hit by the proverbial truck), I will suffer on with pain and occasionally fear.

For those who tread a similar path whether emotionally or physically, we make Asaph’s and Paul’s words our own: “My flesh and my heart fail; but God is the strength of my heart and my portion forever” (Psalm 73:26) and “My grace is sufficient for you, for My strength is made perfect in weakness” (2 Corinthians 12:9).

Mark McGinniss (PhD, Baptist Bible Seminary) is associate professor of Old Testament literature, languages, and exegesis at Baptist Bible Seminary; his specialty is Song of Solomon. He blogs at http://outsidemydoor.wordpress.com.

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