Why I abandoned blogging about facial pain

Although I have not posted a new entry to my blog in several years, I still hear from people who have recently found it. That news is always a double-edged sword. The entries have helped someone. I rejoice in that. One more person is suffering, though, and my heart breaks again.

On more than one occasion, someone has let me know that my entries have been stolen. I go to the site of the blog that has copied my experience verbatim. I contact the thief and receive no response. 

Plagiarism fails students. It ruins careers. But these nameless Internet entities get away with it.

I keep my blog free from advertisements. If I were to open the door to Google ads, a procedure I do not endorse might appear on the pages of my musings. Helping someone is more important than gaining a little bit of cash.

Privacy is another issue. I have kept links to my blog public on Facebook. I want people to be able to share them. Support is gained by sharing the universality of pain, the common denominator of knowing others have felt exactly as we feel. Although anyone can read my blog, it is intended for those who are suffering.

With trigeminal neuralgia awareness day approaching, helping others cope with facial pain is on my mind. I’ll be posting again soon.

One more thing: my last name has changed. I won't mention it here, but many of you know it. I remarried after finding a cherished friend of mine on Facebook.

Hold onto hope. Love is stronger than pain.

When a road ends

Trigeminal and glossopharyngeal neuralgias can obstruct love. Like most roadblocks, the obstacles present challenges for those trying to navigate around them.

If you are reading this, then you have probably experienced many of them: physical distress upon being kissed; feeling rejected because your partner does not understand the intensity of your pain; and having plain old bad breath because it hurts to brush your teeth. These are just a few effects of some cranial nerve disorders.

My marriage almost fell apart when I was ill. How frightening it was, the thought of losing my health insurance and the stress of enduring a divorce. There were times I wanted to buy an AirStream trailer and hit the road, an illogical notion because most of the time I was not able to drive. How desperately I wanted to escape.

My ex-husband did not leave me, never asked for a divorce. I thank God for sparing me from that situation. But my spouse withdrew, and I never got him back. Meanwhile, I changed and became much different from the woman he had recently married. The onset of trigeminal neuralgia came a mere two and half years after we said “I do.”

One thing I can honestly say is this: I feel certain the marriage would not have survived even if I had remained healthy. That is the most important thing I have to share with you.

Like anyone who experiences a divorce, I noticed that some of my friends disappeared into thin air. I was not surprised. Watching a marriage end, especially when one partner has a history of facial pain, can strike fear in the hearts of others who share the same disability. I understand this, and it is why I feel it may be beneficial to offer an explanation.

Illness does not destroy a marriage, just as roadblocks do not destroy a street. Sickness increases pre-existing marital stress.

On any extended road trip, detours are likely to occur. We may hit potholes as we try to find our way back to a more suitable route. As long as two people stay in the same vehicle, they stay on the same path. Staying together can be accomplished if they refuse to lose sight of each other.

Love is stronger than pain. I still believe it.

When dying seems preferable to living

Those of us who have experienced the torment of trigeminal neuralgia know there are worse things than dying. Intense and unrelenting suffering can cause a person to lose hope in living, but we must hold onto it.

When I was ill with trigeminal neuralgia, I longed for death. My own suffering caused me to think about the violent death of Jesus and how His pain surpassed mine. If anyone understood that no one really understood, it was He. By "no one understanding," I refer to how our friends and family may think that we can overcome the pain if we want to, if we try, if we think positively. All those things can help, but they don't stop the pain. The stings, strikes, and electrocution-type pains simply wear people down.

Let's shift our focus back to Jesus and think about someone whom He loved, Lazarus. Lazarus was dead, in a tomb, and stinking when Jesus showed up. And we see in John 11, that Martha (brother of the deceased) was not happy with Jesus because He had not been around to heal His friend. But Jesus told her, “I am the resurrection and the life. A moment later, Jesus called for Lazarus, and he came out of the tomb: alive again.


After suffering so long, I remember changing my mind about wanting to die even when pain had spiraled out of control. My mother prayed for me and comforted me and through prayer, I got close enough to Jesus to "hear" Him calling my name. Like never before, I believed in His resurrection power. I began to ask Him to help me live.


Jesus gave me my life back. That was six and a half years ago. I've endured pain from another cranial nerve since then, and I have had some terrible neuropathic facial pain because of a jaw procedure that has gone awry. But Jesus has helped me through it all, helped me reclaim my life each time.


I am not ashamed of the gospel of Jesus Christ. I owe my life, my health, and every good thing that is within me to Him.


Happy Easter. 


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Memorializing Cherry

A week ago, my friend Cherry died. She had been ill for a few weeks, but she seemed to be getting better. Then she suddenly died. My mother knew Cherry since they were in elementary school.

Cherry lifted me up and supported me while trigeminal neuralgia seemed to be winning in a war it had launched against me. Although she had not experienced facial pain, she never doubted the intensity of my suffering. There were times when she put her needs on hold to stop and pray for me. One day when my speech was painful and distorted, someone laughed at me. Cherry spoke up because it made her angry. She was the type of friend who could be counted on in times of trouble.

Cherry was a blossom who didn't fade but continually bloomed. I'll always miss her.

Years ago, I wasn't able to go to funerals or stand outside because of having trigeminal neuralgia. Monday I was able to do both, celebrating her life and acknowledging Cherry's passing. Although I am relieved that she is no longer having pain and is with the Lord, I will always miss her.

At the cemetery, the wicked wind chilled the mourners. It slapped my face, reminding me of the electrocution-type pains it would have caused me years ago. I thank the Lord for the opportunity to live a "normal" life again.

Thank you, Cherry, for your prayers, your love, and your laughter.

Loss Part 2: Initmacy

I can’t think of anything that affects intimacy as profoundly as face pain, especially when it affects the mouth. If someone can't practice good oral hygiene, romance or being close to someone may be one of the first things that go out the window.

So many times I have covered my mouth when someone has entered my home to speak with me. I try to be prepared, but surprise visits can make the Boy Scout's guide impractical. To get myself ready for planned encounters with others, I’ve used plenty of Biotene mouth wash. It’s made without alcohol, and it never bothered me to use it. Recently I tried Crest's alcohol-free mouthwash, and I was impressed. It costs much less than Biotene. The pain, though, was not nearly as acute when I tried the Listerine, so it’s not actually comparing oranges to oranges. There’s nothing, though, that compares to the old-fashioned practice of tooth-brushing and flossing. I have had months on end that my mouth never ever felt clean. I thank God that I am able once again to brush my teeth and floss.

The pain caused by jaw problems, trigeminal neuralgia, and neuropathic facial pain can stop physical intimacy dead in its tracks. In my opinion, there is nothing more romantic than a kiss from my husband.

How do you kiss someone who has trigeminal neuralgia? Very gently. If the pain is on one side of the face, approach from the other side. Talk about it if you are uneasy. If the person you loved has winced when you attempted a kiss, don’t take it personally. Your love interest may have looked as though he or she is a deer caught in the headlights. The thought of kissing can be downright scary for a person with facial pain. With conversation and tenderness, a way to share yourself with someone else is possible.

Nighttime caresses can also be challenging. I remember using a separate sheet and blanket. When my husband tugged on a sheet that we shared, it would sometimes brush up against my face. That’s all it took, brushing lightly against my face to cause the electrocution-type pains. The sensitivity to the pain and its intensity is almost impossible for others to understand, and that is a threat to intimacy of any kind: the loss of trust.

If someone doesn’t accept the plight of a person with facial pain, trust can diminish or even dissolve very quickly. I’ve never talked at length to anyone with trigeminal neuralgia who has not experienced fear of the pain. It’s important to talk about the fear and to be someone who can be trusted.

Sometimes people with trigeminal neuralgia have eye pain. It’s terrible. I remember feeling as though my eye would pop out. I didn’t want anyone or anything near my face. I didn’t want a hug, but I wanted to be close. My husband’s arm around my waist meant everything. A friend who put her hand on my back or shoulder instead of hugging me was cherished.

What do you do if there have been misunderstandings about trying to get close? One way to rebuild trust and intimacy is to practice touching with your friend, family member, or spouse. Another way is to communicate in writing if the person has difficulty talking. Send an email, write a note, use text messaging. No one wants to feel alone. Don’t let the pain win. Be close in spite of it.

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Families and pain

What do we live for, if not to make the world less difficult for each other? - George Eliot

So much has been written about caregiver support and the stress of caring for someone who has a disability or illness. I am thankful to have a supportive family. My mom will drop everything to help me when the jaw and face pain is so terrible. She did the same thing when I was having pain from trigeminal neuralgia. Life would be so much more difficult without her, my husband, and my daughter.

It is not unusual for us to hear about the toll that an illness takes on a family, but I want to look at this from another angle. Let's think about the stress - stress that triggers more pain - that can arise from family situations. So many of my friends still have children in their teens or away at college. The process of individuation causes stress not only for the child who is anxious to leave childhood behind but also for the parents and siblings.

We hear so often that trigeminal neuralgia is a disorder that normally occurs at or after the age 50. Yet I hear more and more younger people with it, especially mothers with children at home. These mothers are charged with caring for their children, but this tremendous pain is difficult to understand. Consider how difficult it is for most teens to put themselves in their parents shoes. Is it possible for a teen to have empathy for a parent who has a mysterious and totally debilitating pain? I think it is possible. We all want to have our needs met, but what happens when the mother or father's needs have become so great?

Communication is the key to learning how to meet one another's needs. This issue is also at the core of successfully navigating through the individuation process. Growing up isn't easy, but having pain isn't easy either. Parentification occurs when children take on too much responsibility for meeting their parents needs. It can rob childhood.

Loss caused by pain not only affects the individuals who have but also has a great impact on those who love the person who has the disability. Discuss needs that have been created by disability as well as needs that are no longer being met. It can lead to a greater understanding of one another and acceptance of the changes. Solutions arise when people determine to find them, when they advocate for the family member who is ill and when they look for constructive ways to meet their own needs.  

There are no easy answers, but I really believe that love covers a multitude of sins. Speak love, even if it has to be written or put into a text message. Love is what I live for. It is stronger than pain.

How has love helped you through an illness?

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