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.

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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.

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