Conversations with Job: suffering, accusations, and integrity

This past week, I've been reading the book of Job, a Biblical account of a good man who lost everything, including his health. Job's life turns upside down overnight, a riches to rags story.

When I consider Job's tremendous suffering, I think about people who are dealing with trigeminal neuralgia. Many have told me they relate to Job's situation because the pain from TN is so tremendous. I remember feeling the same way, years ago.

Facial pain can steal the things we cherish. People who are at the top of their game turn to focus on finding relief: an accurate diagnosis, a medication, or a procedure to erase pain.

In spite of the provisions the government has made for people with disabilities, individuals who have trigeminal neuralgia and other types of face pain sometimes lose their jobs. It's couched as "restructuring," or blamed on "this economy." After all, corporate America must abide by the Americans With Disabilities Act.

Friends and family sometimes expect us to "get over it" and get on with our lives. When we can't, many of them retreat. Some of Job's friends, if they can be called that, accused him. They told him that his misfortune was caused by his own actions.  Zophar tells him to leave his sins behind and to confess them to God. In other words, get over it and get well, Job.

When I got sick with trigeminal neuralgia, some of my friends looked for a spiritual cause. Was I dabbling in something I shouldn't? Was my husband in business with someone immoral? Did we live in a house with a violent history? The possibilities seemed endless. Maybe someone has intimated that you are somehow responsible for your pain.

Handling accusations of this nature is tricky. We don't want to be deserted or alone. Yet critical rhetoric can make the anguish of pain even more intense. How can we respond? With his body practically decaying while he was alive, Job blamed no one, not himself or God.

Job's buddies missed his money, his prestige. But Job's integrity remained intact. He stated that we can't take it with us and refused to dwell on his material loss. But his health was another matter. Physical suffering cannot be denied. It's the ultimate thief. And it was the most difficult loss for Job.

Later Job's health and wealth were restored. You may have suffered so long that you no longer believe you will have a life again. Have faith that you will get better. If you need counseling to help you regain hope, find a practitioner who is experienced in counseling people with chronic pain.

Without hope, it's difficult for people to overcome pain. Don't blame yourself for disability. It's not your fault.

For more information about The Americans with Disabilities Act and facial pain, please see "disability and loss" on my website.

Like a green olive tree

But I am like a green olive tree in the house of God: I trust in the mercy of God for ever and ever. Psalm 52:8.

To understand why this verse might be significant for a person who experiences so much pain, it is necessary to know the characteristics of a green olive tree. This robust tree can live for centuries, even in dry, barren, and rocky places. To harvest the olives in Biblical times, the green olive tree would be beaten with sticks to knock the fruit from its branches. In spite of that, the tree would continue to produce new fruit. The strength of this tree comes from its roots, which go deep into the earth. The green olive tree’s roots are so deep and so strong that they survive even if the trunk is burned or cut down. The roots will send up new shoots, and they will bear fruit. The green olive tree knows how to survive and thrive even in the harshest of environments.

If you live with trigeminal neuralgia or other types of face pain, you have experienced a hostile environment. Years ago I felt that my body had become my own prison. By God’s grace, I was released from the pain. I went back to a “normal life,” and was teaching a Bible study for the ladies’ group at my church. In the course of the study, we discussed Psalm 52:8 and another verse about an olive tree, Deuteronomy 24:20. When thou beatest thine olive tree, thou shalt not go over the boughs again: it shall be for the stranger, for the fatherless, and for the widow.

I cautioned the ladies to preserve some of the fruit that they bear for people that God will send to them. It’s so easy to get depleted, to have every piece of fruit (or every bit of energy) taken from us. Today’s demands are heavy: careers, children, aging parents, ministries, volunteer activities, and church functions. The list is endless, and our heavy obligations can leave us with no time or energy to help someone that the Lord puts in our path. At the time I wasn’t working, but a few months later I returned to the work force.

Last March, I went on a business trip to meet with a group of people who were experiencing facial pain. A couple of hours before I departed, I was gripped with terrible pain. It radiated from my jaws and into my face. The pain left during the last leg of the flight, but when I arrived at my destination I was exhausted. I enjoyed the visit, and it was soon time to return home to Florida. I was on a tight schedule, with an appointment the day after my return.

I learned that my schedule was going to be much tighter than I expected. The weather caused flights to Florida to be cancelled for the day. I left the airport and went to a nearby hotel. The first thing I did when I walked into my room was take the Gideon’s Bible from the desk. I don’t ordinarily open the Bible and read it where it falls, but on this day I was desperate. I wanted a word to calm my frustration. I looked at the open page and began to read Deuteronomy 24:20. Tears fell down my cheeks as I realized that I had ceased to bear fruit. I had nothing left to give to strangers, to the fatherless, or to widows. In fact, I had nothing to give to my family. I was always in need of their strength and support.

I surveyed my life that day and realized that my roots had not found the nourishment they so desperately needed. In Gainesville I had not found a church that I could call “home.” I was living away from my family and saw my husband only on the weekends. I missed him terribly. My noisy neighbors got home from work every morning at 3:00 a.m., and sleeping through the night was difficult. Worst of all, my own pain continued to increase.

Had I forgotten about God? No. I still read my Bible each morning. I was sad because life had become so difficult. I wondered why I was having so much pain in my jaws and neck, and I longed for home. I faced this fact: circumstances had beaten me down.

That day in the airport hotel, I asked God to restore me. Because I had experienced trigeminal neuralgia, I knew that that the current pain was very different. It wasn’t long before I began to notice some things that pointed to the root of my facial pain. For example, my teeth, which had always been straight, had become crowded and crooked.

In the diagnostic process, the facial pain and jaw dysfunction grew worse. I could not continue working, but I had answers about the root of the pain. Having a diagnosis gave me some relief, but it did not make the pain stop. It was clearly caused by my jaws, which were often locking shut. I resigned from my job and stayed home. Several months went by before I began to feel better. My body rebelled if I moved around a lot, so I stayed still. Very still.

Sometimes the Lord wants us to be still, to wait for Him. Sometimes we have no choice. It was while I stayed still that I could really focus on Jesus. My roots began to receive the nourishment they needed. Jesus is my source of strength, the One who helps me grow.

Although I was overwhelmed and beaten, my roots had not died. Your roots are still alive. You can also experience growth and restoration. We are like green olive trees, and the Lord wants us to bear fruit. We will be able to help the widow, the fatherless, and the stranger once again… with God’s help.

Have you read With Great Mercy?   A follow-up post to the green olive tree is available.

Loss Part 3: Identity

Do you ever feel as though you are sitting on the sidelines of your own life? It's not unusual for people who experience pain and disability to feel as though they have somehow lost themselves. I remember not wanting to believe that I had changed, but I had. Many of my strengths had turned into weaknesses. Some of my abilities had become disabilities. I was in the middle of my life and didn't know where to go or what to do next. All I knew was that I didn't want to stop but had to. I loved teaching drama, but I had to let it go.

Quick wit, the ability to concentrate, and physical prowess can seem to evaporate if the pain comes to stay. Medications to help facial pain can cloud our concentration, obscure our ability to respond quickly, and cause physical issues such as balance and sluggishness. Career and volunteer activities may become a drain instead of a challenge.

If we have trigeminal neuralgia, neuropathic, or orofacial face pain, we may begin to experience social isolation. This can be spurred by the environmental barriers that are unique to people with face pain: breezes that cause electrocution-type pains and noise or vibration that causes the pain to strike. Isolation and loneliness can also be caused self-consciousness. Some individuals gain weight with face pain, especially because of some of the medications' side-effects. Others may be unable to brush their teeth or receive dental care on a regular basis.

Things that seemed so intrinsic - like a beautiful smile- now seem to escape us, things like a career or a desire to grow a family. The losses caused by pain can be distressing, but there is hope. Hold onto it. Don't let go.

Finding the best treatment takes a while because of the idiopathic nature of the pain. What works for one person doesn't work for another. Medications that seem to turn us into "zombies" also require a period of adjustment. Ten years ago, when I started taking an anti-seizure med, the trigeminal neuralgia pain left. I slept like crazy for three months. Then the feeling of sleepiness left, and the pain stayed away. (Can I tell everyone how disappointed I was when I developed an allergy to this medication?)Another thing that takes time is prayer. We normally don't get answers overnight. A period of waiting is almost always involved. Hold onto hope. Hold onto your faith. Continue to wait.

Waiting is one of the most difficult things we can do. Being in limbo places even more pressure on an individual who has experienced so much loss. It is important to remember this: we have changed but we have not lost ourselves. We have not become someone else.


The challenge we face is learning how to make the best of our lives after we have experienced losses associated with facial pain. There are many ways to do that. One way is to address career concerns. Every state in the U.S. has a vocational rehabilitation program that receives federal funds. It's there to provide education or training for people who have disabilities. People with face pain qualify. Because trigeminal and neuropathic facial pain are rare, you might want to prepare information for the rehabilitation counselor who will interview you. Make a list of things that cause you pain, such as talking, sitting in air conditioning, or being in a noisy environment. If you are having issues caused by medication, list those also. If you are employed and want to stay with your company, the Job Accommodation Network (JAN) can help you and your employer make arrangements to help you stay where you are. JAN is part of the US Department of Labor. They have a website and a toll-free number.

One important thing to focus on is what you can do, not what you cannot do. I've been in situations that were overwhelming. It's hard to recognize the need to make a change. Letting go doesn't mean losing. It can mean that we are going to find a new and better way.

Call me crazy, but I think the world would be a better place if everyone were to experience trigeminal neuralgia for just one day. We'd live on a more compassionate environment. We'd have more empathy for others. People with face pain have learned how precious life is. It's something we can teach others. Even in the midst of our pain, we can help make the world a better place.

I want to thank the Lord for answering so many of my prayers. When I lose one thing, He always gives me something better. It takes me a long time to recognize the blessing, but it is always there.

Experiencing and Recognizing Loss -Disability

Let's talk about loss. Depending on who we are and what we have lost, the definition of it can change somewhat. If we are talking about a personal loss, we're trying to help someone truly understand our plight. That's when it becomes necessary for us to accurately portray what the loss involves. This is where the dilemma arises. Do we depart from our efforts to "think on the sunny side of life" and expose our inner bellies of pain and grief to someone else? We wonder if the other person can be trusted with our reality. It's a risk when we invite someone in to really hear the truth about the loss that is so personal to us.

I'd like to digress a little bit and address the word loss. In school we learn not to use the same word over and over again in a paragraph or even in an essay. I like to ignore that rule in my blog. If we want to deal with something, how can we do so if we call it by another name? Why sugarcoat it? It's not just an issue, is it? It's loss. Something we once had is gone. Period. We want it back, but it eludes us.

Because loss is such huge subject, I want to write about it for a while. Today I'll try to tackle one of it's sub-topics: disability. It's a topic I can really get fired up about.

Disability benefits are necessary for some people with facial pain. This is true for people with trigeminal neuralgia, orofacial pain, neuropathic facial pain, and face pain that has been named something else. I don't have to tell my readers why their pain causes dsyfunction and disability. They already know. Let's talk about what happens when we are forced to explain it to someone who has not experienced it.

No one - absolutely no one - wants to have facial pain. I have talked to hundreds and hundreds of people. They're all interested in one thing: "How do I get rid of this?" So if you are going through a disability application process, whether private or through Social Security - you'll be asked to explain how your pain affects your ability to work. It's a fair question. But the answer isn't fair.

Most people with facial pain do everything they can to make their lives as normal as possible, as enjoyable as possible. Those of us who understand that a mind-body connection (and that's MOST of us) exists want to think about things that encourage us to keep going. We want to think about the wonderful things we still have, even if the wonderful thing boils down to the fact that we are still alive.

So what happens with the time comes to explain the pain to people who review disability claims? We have to reach into our minds and think about the loss, the things we cannot do but would like to do. We have to remember that once we identified highly with our jobs and our ability to perform. Whether we are in the business world, teaching a class, or counseling others, work is all about fulfilling expectations. To walk away from something that fuels our self-esteem and bolsters our identity is devastating. We lose a part of ourselves. We also lose income.

I have spoken with many people who have lost their jobs, their homes, their medical benefits, their spouses, their self-worth. The list of losses goes on and on. Let's get even more personal: they've lost their ability to kiss, to speak, to chew, to swallow, to concentrate, to remember important things, to brush their teeth. It's difficult to stop naming the losses.

If people are trying to cope with everyday life, chances are their losses don't live on the tips of their tongues. People who have pain are either trying to maintain their ability just to get through the day or trying to move on with their lives. Why bring up the losses that cannot be changed? Because we have a valid claim that we must substantiate.

The thing I hate about the disability benefit process is that we have to justify being sick. It's much healthier for us not to think about it and to focus on the good things in life. But to get the money - which we deserve - we have to think of our worst case scenarios and expose our vulnerabilities. It's just not good for us.
We're putting ourselves out there to be judged. It's frustrating and causes feelings of guilt and helplessness. We've already experienced these feelings because of the pain. Now here they come again as we try to justify our needs. With the explanation emerges the feelings we try so hard to suppress.

We feel so alone, like failures. But we aren't either one of those things. We are coping with something many people are afraid to understand. They don't want to let it sink in. After all, could it happen to them? Will they take the chance to identify with your situation? Probably not. You already know this, don't you?

There's a time and place for everything, something else you already know. The time to make the loss and the pain clear is during the disability application process. It's not fun to share the pain. It's going to feel crummy, but you're surviving the pain, and you'll survive this process.

I'd love to hear from you, about your losses. It may help others if you post them here on this blog entry, too. God bless you and may you regain what you have lost.

For more information on loss and disability issues, please visit my website: www.withgreatmercy.com