We wait. It is a part of life that can be terribly unpleasant. A popular theme, fiction, non-fiction, and plays have wait in their titles. Tom Petty, whose band Mudcrutch played at my high school dances and events, sings about how “The Waiting is the Hardest Part.” He’s right, and I love his song. The scriptures contain plenty of verses about waiting. A favorite comes from Isaiah 40:31. But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. I want to mount up with wings as eagles, but I do not want to wait. I have grown weary. Frustrated. Exasperated. Somewhat confused. This morning I was listening to Jeremy Camp’s song, “Dead Man Walking.” Most of us are familiar with the expression and how it refers to death row, a convicted person walking to his or her appointment with execution. I thought of all the times I begged God to let me die. I wanted to wake in His arms in Heaven, to be relieved of suffering. I had trigeminal neuralgia, and sometimes it was difficult to live through the next minute. I was a dead person living, barely able to walk and not able to talk. Long after the Lord healed me, I began to experience terrible pain from glossopharyngeal neuralgia. I had learned too much to pray for death. From my previous experience, I knew that God would not leave me in such terrible pain. I saw the present suffering as temporary. I had assurance of God’s love, and I was well acquainted with Hebrews Eleven. Now faith is confidence in what we hope for and assurance about what we do not see, states the chapter’s first verse. It happens to be the following verses, however, that fill me with faith. By faith, Noah built an ark and saved his family and himself from the great flood. By faith, Abraham, whose body was as good as dead, had a child with his aging wife, Sarah. Abraham became the father of the world’s largest nations. By faith, Abraham offered his son as a sacrifice, and the Lord honored his obedience by providing an alternative. By faith, Moses’ mother hid him, and he became part of the Pharaoh’s family. By faith, Moses led the Jews of out of Egypt’s bondage. By faith, the wall of Jericho fell, and the Lord’s people gained control of the city. Kingdoms have been conquered and the mouths of lions have been shut by faith. We recover by faith. We win by faith. Sometimes all we can do is thank God for an answer that hasn’t come yet, by faith. Whatever you and I need today might require waiting. Perhaps we will be used and abused in the process. I feel weary, and you might, too. But by faith, we are more than conquerors. By faith, we ask for more strength. By faith, we walk, not to death but to life.

Trigeminal neuralgia: Is it really the suicide disease?

Several years ago a blog post popped up, stating that 26 percent of all individuals who have trigeminal neuralgia (TN) commit suicide. I was working for TNA, The Facial Pain Association at the time, as the Director of Patient Services. What this means, basically, is that I communicated more with people who have TN (and their families) than most people did.

The people who contacted me were upset about the statement were upset. The link to the blog was forwarded to me, and I sent an email or wrote a comment to the author. I asked him or her to reconsider the post because it had alarmed people. I also told the author that we at TNA knew nothing of such a statistic. I never heard from the blogger.

I have no statistics for you, but I have my own experience and anecdotal knowledge. I am hoping it will reassure everyone who reads this.

For two semesters, I did a twenty hour a week internship with TNA to finish my master's degree in rehabilitation counseling. I took a break and later went to work for the organization. I became ill with glossopharyngeal neuralgia shortly after I went back to work, so I was employed just a little over a year. During the course of my internship and my employment, which was approximately two years, I was not informed of anyone who committed suicide during that time. I suspected one person might have taken his own life, but the cause of his death was not shared.

This statistic, 26 percent of all people having TN committing suicide, is completely false to the best of my knowledge. Recently this assertion has gained momentum. The thought of so many people succumbing to this choice is downright scary: almost seductive on a really bad day.

It is not unusual for people who have TN to sometimes consider suicide. It happens in the midst of the horrifying pain. I remember the first time I voiced what I had been thinking for months: "They've been too hard on Dr. Kevorkian. Some people might really need him." Dr. Kevorkian was sitting in prison at the time for assisting someone who wanted to end his or her life. I had joined the ranks of those people who considered bringing my pain to an end. As a counselor who has experienced this type of suffering, I want to encourage you to not be alarmed about fleeting thoughts that occur in the midst of and immediately after the pain strikes.

How did TN get the label? It was explained to me that years ago, before medications and surgeries, that suicides were more prevalent. This is anecdotal information. I cannot say that it is factual. 

Here are a few things we can do to help us deal with the urge to end it all:

Have a network of support. If you have joined an online group, find two or three people in it who are usually positive and supportive. Find ways to contact them that do not require talking, such as text message or email. Be available for them when they need you.

Tell a trusted family member or friend. This is more easily said than done, but don't give up on finding someone to trust. Share with this person that you want to live, that you want to get well. Make it clear that, at times, the pain makes it difficult to want to continue.

Make of list of reasons to live. Make this list as vibrant as you can, including pictures of people you love. Write their words of love to you and things they have said that make you laugh.

Eat properly. Protein shakes can be a great way of keeping one's body sugars stabilized. They do not require a person to chew or cook.

Tap into your spiritual strength. Mine comes from Jesus Christ. Music, scripture, and prayer sustained me during my illness. For a long time I prayed to die. Then I began to ask the Lord to help me live, to live well. He answered that prayer. With Great Mercy: read it and know that even on the worst of days, you are not alone. You can buy a copy of my memoir on Amazon or Barnes and Noble or from me. I will sign it and write a personal message to you.

Please post your own suggestions on my blog for others. We really do want to live.

Have you visited my website?

Night terrors and trigeminal neuralgia: a spiritual approach to fear

If one has trigeminal neuralgia, terror can rule the night. I was married when I had pain so horrific that my spouse sometimes awakened me, explaining that he could not sleep because I was screaming. I was amazed by the fact that I could slumber in spite of my physical distress.

I am aware that I am not the only one who has slept through his or her nocturnal pain, but I do not know who shares this experience. When I began my internship for TNA, The Facial Pain Association, I heard that Dr. Joanna M. Zakrzewska would be studying this phenomenon. Although I got an email from her regarding the proposed research topic, I did not hear more about it. I was comforted, however, by knowing I was not the only person with this bizarre story.

Knowing we are not alone in our suffering is part of the validation process. I have taken many calls from individuals who felt they had to explain the pain to me. When they discovered that I had also endured it, I would always hear a sigh of relief. The caller could move onto the questions he or she had for me with assurance that I "got it."

When night falls and people who have TN try to sleep, pain and fear can heighten. One reason is that trigeminal neuralgia, glossopharyngeal neuralgia, and other types of neuropathic facial issues, often get worse when an individual lies down. Also when we are not distracted by the business of the day, pain comes to the forefront of our consciousness. In a future post, I will feature a guest who will address these issues further.

In the night our mind, spirit, and body connection seems to increase. Consider the dreams you have had on occasion, how they revealed your unspoken desires, your deepest fears.

Fear is the enemy of anyone who has trigeminal neuralgia. We are frightened by the electrocution-type pains and wonder how we can endure more of them. After all, anyone who knows that he or she will get struck by lightening in the future has a right to be afraid.

We cannot control the pain, but we can try to reign in the trepidation. How we benefit from the mind, spirit, and body connection? By saying a prayer, we involve all three aspects of our being. Will you read this prayer with me? It is the 23^rd Psalm.

The Lord is my shepherd; I shall not want. He makes me to lie down in green pastures; He leads me beside the still waters. He restores my soul; He leads me in the paths of righteousness For His name’s sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil; For You are with me; Your rod and Your staff, they comfort me. You prepare a table before me in the presence of my enemies; You anoint my head with oil; My cup runs over. Surely goodness and mercy shall follow me All the days of my life; And I will dwell in the house of the Lord Forever.

By reading the prayer, we use both mind and body even if we read silently. And if saying the 23^rd Psalm is done in hopes of having a better night, an individual has employed faith. Prayer could a be the vehicle that helps you begin to mend. 

Faith is like a muscle. If we do not use it, it shrinks to nothing. Pump up! Believe you can get better. 

Opening the prison door

Pain can be a prison. It holds us captive, rendering us unable to overcome circumstances and to live a full life, and powerless to reclaim the freedom we once knew. Once trigeminal neuralgia or other forms of neuropathic facial pain strike, we may realize that we didn't fully appreciate our lives prior to the onset of the disability.

We look for answers, proclaim ourselves not guilty, and know we wouldn't wish this type of torment on anyone, even our worst enemy. We call for a guard, and he or she comes, but they do not unlock the door for us. Medications, procedures, and alternate treatments don't always work. We're trapped.

Maybe you've begun to fear that you have received a life sentence, that the pain will never leave. Hope becomes elusive. Without hope, we cannot go free.

Don't give up. Make your release a goal. Don't accept a life - or a death - sentence.

Coaches and teachers have teach their students to "keep an eye on the prize." I believe it is appropriate to adopt this way of thinking. Picture yourself living a normal life. Don't lose sight of it. Step by step, visualize yourself in better health. Hold tightly to things that you cherish.

I held onto my belief that the Lord would not "leave me" in such terrible pain; receiving a miracle was my goal. By the time my prayer was answered, I had  experienced quite a bit of isolation. I didn't really know how to relate well to people any longer. I was grateful. I asked what could I do to help someone else, something I could do from home.

Soon I became involved with Prison Fellowship Ministries. I started as a penpal, and the experience mushroomed. As years went by, I volunteered to teach classes at a prison.

My original penpal and I have been writing four years now. In fact, he has become like a son to us. When I first wrote him, I explained trigeminal neuralgia and how it was like being in prison. I sent him a copy of With Great Mercy. When he read it, he understood that prison comes in many forms.

We are experiencing some glitches in our visitation recently. There is nothing we can do about it, but we understand that God knows no limits. If you'd like to offer a prayer on our behalf,  we'd appreciate your support.

Most of all, I'd like you to know that my prayers are with you, that your release date will come soon.  

Not guilty: that's you.

Have you visited my website?

It's flying time again...

Ray Charles, please forgive me for stealing your line, well almost: "It's crying time again." Simply stated, flying often causes additional pain, stress, and tears to those who have facial pain. The pressure changes in the cabin, the noise of the plane and its passengers, and the stress created by airport security issues seem to be enough to give a healthy person a headache. If you're reading this blog, chances are you experience pain that defies definition.

The causes of facial pain vary from one individual to another, and often the cause or diagnosis is difficult to pinpoint. If you have concerns about flying exacerbating your pain, a discussion with your physician or health care practitioner may be beneficial.

Some physicians will recommend that their patients clear their sinuses with a decongestant before flying. They may prescribe medication to help deal with the noise, stress, or other issues related to being a passenger on aircraft.

Because some individuals pain is triggered by noise, two products worth mentioning are Earplanes, earplugs that are made specifically for flying. You can find them online, drug stores, and airport shops. Another option more expensive: noise cancelling earphones or headsets. Although these tools can be helpful, passengers are asked to refrain from using them until the flight instructions have been given and the plane has begun it's flight. They must also be removed just before the end of the journey so information from the flight crew will be heard. You may want to check with the airline to find the current policy is about when the acoustic headphones can and cannot be used.

For those of us whose pain is caused by the jaw or neck, a tiny pillow to give added support can help quite a bit. It's one more thing to carry, but the number of these items are often limited on the plane. Unless one is flying business class, a pillow may not be available.

Fear of flying embraces a new meaning for those who have experienced trigeminal neuralgia, TMJD, or other types of facial pain. Have you heard the expression of living on a wing and a prayer. I think it really fits this situation. How about you?

Happy traveling. May your journey be full of the Lord's mercies.

Have you visited my website?

Believe: no pain, no fear

Can you imagine your life without facial neuralgias or TMD? After pain has been around a long time, it becomes difficult to remember what it is like to “live a normal life.”

I remember when my bed became my home. Hope was gone, and I was preoccupied with why God would not let me die. I wanted to escape the pain, so I prayed constantly to die. Visualizing myself as a well person was a difficult thing to do. Sometimes the seconds seemed like eternity as the pain “electrocuted” the right side of my face and my right eye. During these times, I visualized Jesus. It wasn’t long before my prayer changed.

As the Lord began to pour out His tender mercies, I gained the courage to say another prayer. “Lord help me live. Let me be free from this pain so that I can help others.” Hope returned, and I knew that better days were ahead. It was still difficult for me to picture myself as a healthy person, but my relationship with Jesus Christ had grown. I thought more about Him than I thought about me.

Faith is a wonderful thing. It transcends pain and sorrow. It gives one the courage to believe. I believed that trigeminal neuralgia would leave me. Through God’s grace, I fought the fear of the pain itself. Every day I felt that I was closer to being free of trigeminal neuralgia.

Then one day as my mother and close friends gathered around me, the pain left. The fear was gone. The Lord had intervened.

Since then, I have had plenty of challenges. My jaws have caused more facial pain, but I am thrilled to say that I am doing so much better. Six months ago, it was difficult to imagine myself doing 50 minutes of cardio, but now this is a reality. I can chew and talk, things that seemed impossible just six months ago.

The Lord gives each of us a measure of faith. It might be dormant in your life, but it is there. Don’t be afraid to visualize yourself as a well person. You have nothing to lose but fear and pain. God bless you.

Cold weather and trigeminal neuralgia

As cold weather blasts through many parts of the country, my friends with trigeminal neuralgia are having episodes of facial pain. My prayers are with everyone who is currently having this experience.

I remember last year at this time. I was hearing from so many people whose pain had been triggered by the cold weather. In fact, three months of cold weather had left many people both exasperated and exhausted. Because I know first-hand the excruciating pain of trigeminal neuralgia and glossopharyngeal neuralgia, I have great empathy for anyone who is suffering with these disabilities.

Last year I was working for TNA, The Facial Pain Association when the cold weather blanketed the country. To communicate with so many people who had facial pain was very humbling. If you talked to me or emailed me during that time, please know that your story – your plight – touched me. I may not know your name, your face, or even your voice, but I know your struggle.

The severity of this pain can transcend the physical body and permeate the human spirit. It can cause a person to lose hope, to feel alone, and to wonder how he or she can keep going.

Last year I was experiencing excruciating pain of my own. I had nerve pain in my face, but it was caused by my jaws. What triggered it the most was talking, and talking was part of my job. I don’t talk so much these days, and I am experiencing a season of quietness. The quiet is like a good night, soft and comforting. It leaves me feeling rested and refreshed.

Don’t neglect your spirit while you weather the storm. My prayer is that everyone with facial pain will find relief from the pain and will be rejuvenated. I found strength when I searched the Bible for a way to cope with the pain.

To those of you who are reading With Great Mercy, I hope you will be blessed.

Healing and Prayer

A good friend of mine recently sent me a book that I've enjoyed reading. I don't agree with everything the author says, but that's o.k. Maybe he's right; maybe I'm right. Maybe neither one of us are right. Overall, I think he has some really valid points.

One of the things he mentions is how in some Christian circles it is a disgrace to have an illness. He's right. Some Christians believe in "divine health." This is a phrase that perplexes me. Our bodies are made of flesh. Doesn't this mean that they are going to break down? Wear and tear, accidents, congenital issues, and so many other things cause sickness.

Not everyone believes that God still heals us today, but I do. I have experienced His healing, and I am so thankful for His mercies. I don't know why God has healed me and not some others. Do I think that faith is an element of healing? Yes, but so many people have been told that they are not healed because they lack faith. How discouraging for someone who is already suffering. This tactic is a form of "blaming the victim." I don't consider people with disabilities to be victims, but the mentality of the accuser is the same. We just aren't going to get through life without sorrow, loss, and pain.

Other people believe that "praying harder" does not move the Lord to heal, only that He heals when He chooses. Of course I believe that God is sovereign, but I also believe that He hears our prayers. If we believe James 5:16, that the prayer of a righteous person is powerful and effective, then why wouldn't God hear our prayers for healing?

I offer up my opinion about healing in a world where so many have spoken their opinions on this topic. In fact, most of us are familiar with the tactic of asking people who have an illness to make a donation if they want to have a prayer answered. They want our "seeds" of faith.

Because I am no expert on the topic of healing, I don't want to say too much here. I hope I can reassure those who have been treated like second class Christians because of illness or disability that they have been unjustly accused. I want to encourage you to have faith in Jesus, who healed people because it is His nature. He understands pain.

Don't give up. The Lord hears our prayers.

The Zilla Zone

It's been really great to hear from so many people about your being able to relate to the Facezilla episodes or just plain old trying to eat out. It's so good to know that we do not walk the journey by ourselves. I'm not discounting the times that we feel alone or the times when everyone leaves us to be alone with the pain for a while.

Wouldn't it be nice if we could create a pain-free zone? And while we are doing it, let's include all types of pain: physical, (yes! no pain anywhere) mental (no PhD for me!), emotional (How do you mend a broken heart? Ask the Bee Gees)or financial (Bailed out and debts cancelled).

Let's think about this: day after day without any type of pain in us or around us. That's the kind of life that I would love to have, but let's face it: pain is part of life. All we can do is deal with it the best we can and try to make decisions about tomorrow to the best of our ability. The decisions can seem endless, overwhelming, gut-wrenching.

For people who have face pain, whether it is oral or trigeminal or neuropathic: can you get a second opinion? If you have a procedure and the statistics say 5% of people will experience numbness, are you willing to find out what facial numbness entails? How long it might last? Are you prepared to be one of the 5 percent?

Are we willing to pay out of pocket for procedures that might actually make the pain worse? It happens often. It happened with my jaw. By the grace of God, I'm not angry about it. Someone tried to help me, but it didn't work.

OK so I have written a book. I have a website and a tiny faith-based forum where Believers pray for one another. I am a certified rehabilitation counselor, and I have been the director of patient services for tna, the facial pain association. But none of it gives me my money back, erases the pain, or guarantees me that tomorrow I'll live in a no pain of any kind zone. None of it makes me a giant, who can tower above these experiences just because I have insight into them. I'm someone who makes a lot of mistakes, someone who still needs more energy than I currently have. I'm someone who depends on God to get me through the day. Any day.

I thank God that I have no pain today, and I whisper a prayer for everyone who is experiencing facial pain. No one deserves it. Definitely not you. Please be kind to yourself.

Flossing

People with neuropathic facial pain, trigeminal neuralgia, and jaw joint issues such as TMJ know how difficult it can be to floss or to brush one's teeth. When I think of flossing or going to the dentist, I have a lot of anxiety. But when I look at my gums, I have even more.

There are so many days when I absolutely cannot floss. In fact, they are most days. I also have days when I cannot brush my teeth. I struggle with those days. There is something about the mechanism of moving my jaw around to floss that causes terrible pain. So on my good days, I floss. Flossing aggravates the situation and often causes pain, pain, pain. Have I said pain enough? Here's the good news: I've been able to floss twice this week.

I am thankful for mouthwash and for toothpastes that help fight bacteria yet cause less stinging. Most of all, I am thankful for God's grace. He sees me through the difficult times and gives me rest when I feel that I cannot tolerate another day of being in this situation. He gives me hope for tomorrow. I remember years ago, experiencing the pain of trigeminal neuralgia: I did not want to see the next day. It was during those desperate days that I realized that Jesus was my best friend. I had been a Christian most of my life, but I had never realized how desperately I needed God.

Most of all, I am thankful for the rest and peace that I have at this point in my life. I'm not afraid. I'm content. I'm resting in God's wonderful love.

Trigeminal Neuralgia, a crisis

The pain of trigeminal neuralgia and other types of neuropathic pain creates a physical crisis. Our bodies and minds don't know what to do with pain so intense that it seems to separate us from reality while it occurs. Although we are strong and have successfully coped with other challenging situations, violent face pain leaves us with few clues about how we can manage it.

Regardless of all the years that we have been in the driver's seat of our own lives, the random pains take the wheel. They drive us to look for relief from the pain, the cause of the pain, and for understanding. Now we are in the back seat of a taxi with a driver who doesn't speak our language and who cannot be trusted.

In this journey, we pick up some other passengers: medication and treatment (as well as their possible side-effects); financial strain (treatment costs and loss of wages); employability issues (What? you can't take phone calls?); and the ghosts of friends and family (somehow they seem to fade away). We aren't sure where we are headed, and we are desperate to pick up a passenger who knows the directions.

At the very core of our journey is heartbreak. When the people we love don't understand the rapid and dynamic changes that have erupted in our faces and our lives, we feel so alone. Skeptical expressions cross the faces of our co-workers, our employers as well as our clients, students, and our patrons. Our distress and inability to function as before is often attributed to having issues. What people don't understand is that the pain and dysfunction cause the issues.

Have you ever been told that you are just making excuses to get out of something you don't want to do? Has someone expected an overnight miracle to take place in your life? Do people think you should have a tooth pulled or have another root canal? They cannot relate to your experience. And lets face it. How could we have imagined this terror if we had not experienced it ourselves.

This is the time to remember that you know more about your situation than the frenzied taxi driver and the passengers in the cab. It's not time to jump across the seat to grab the wheel. But it is still your life, so you can place demands on the villain that has commandeered your vehicle. You are going to invite some people into the taxi with you, and you may decide to drop some of the ones who are occupying the seat next to you.

Some useful passengers to pick up are books. Don't depend on the Internet. Buy some books about face pain and trigeminal neuralgia. You can take them anywhere, read selected portions again and again. You can share them with others.

Another useful passenger is a support group or a telephone support contact. Several organizations have support groups, including but not limited to TNA, the Facial Pain Association. Other groups, such as the American Chronic Pain Association, may have a group nearby. Rest Ministries, a Christian organization, also has support groups for people who have pain. Although there are many good organizations, there is no substitute for talking with or meeting someone who has experienced facial pain or trigeminal neuralgia. This person is key to helping you reach your desired destination.

Along the way, you may want to pick up someone who looks totally boring. It's the American with Disabilities Act. You'll find that he might be boring, but he's powerful. He'll help you get through some issues on the job. If you need accommodations on the job, he knows how to help you attain them. He's on your side, and you can trust him with the driving until you are ready to take the wheel.

As the new passengers reassure you, hope emerges. Don't let go of it, even during your toughest moments. Abandon the taxi and climb into your own car. Sit in front, but select drivers from the new passengers. You may want to look for a counselor who specializes in chronic pain issues. Take a look at the supportive people in your family and ask them to ride along with you. Don't worry about the size of your vehicle. The bigger it is, the more fuel efficient it is. Your passengers are providing energy, not taking it.

The most challenging passengers to find may be your health care providers. If you aren't satisfied with your first physician, go to another one. Sometimes it takes visiting several before you can find a good fit. It's important to remember that your health care providers are passengers. Don't let them drive or make decisions for you. It's your body. You may also want to consult with your other passengers, those books, support groups, and family members before you decide to have a procedure.

It's important to remember that your mind, body, and spirit are connected. Don't forget your spirit. Feed them with faith in God and prayer. They'll help you know when you are ready to drive again. And you will be back in the driver's seat. You will.

If you would like to contact me, you'll see my website listed, and you can send me an email from there. I'll be happy to ride along with you on your journey. I've been on one similar to yours.

Now I'm looking for some passengers who know about a unique problem I have with my TMJ area. I have some wonderful passengers in my car, but my journey can be enriched by adding more.

Kathy (Gilbert) Taylor