Monday, June 28, 2021
Back then, Facebook and Twitter did not exist. The Trigeminal Neuralgia Association had a skeleton website with very few features. Most of the time, I couldn’t talk, so there was no way I could call. I had no idea that one day I would become the director of patient services for this organization, which is now known as TNA, the Facial Pain Association.
Because of the Internet, living with pain has changed. We have groups on social media where we can post our thoughts to be read by the masses. Sometimes we meet someone with whom we click, forming bonds with a friend we have never met. These bonds become exceptionally important, and without knowing it, we might be someone’s temporary lifeline. Here are some things we can do to encourage others, even when we are still in pain.
Check in often with your friends. A direct message or a tag helps, simply asking how the individual is. It might be something like my pain is a level five today. How is yours?
Write about hope. You don’t need to write something original. Quotations and scriptures are quite helpful. The Psalms have an abundance of helpful verses. Philosophers from around the world have offered their wisdom. It’s okay to do an Internet search for a quotation about hope or healing.
Post about remedies that help you. We know about how differently we all respond to treatments, how what works for one doesn’t work for another person. So, if something helps you, please share it with others.
Provide updates when you feel better. If you have reached out on a really bad day, put a note on the original post when you are doing better. It lets a new reader know that you got through that episode of pain.
Be kind to everyone. Pain, medication, and disability can make each one of us sensitive. Tread lightly when disagreeing.
Let someone know you are going to say a prayer for him or her. It doesn’t have to sound fancy. Just ask the good Lord to help that individual.
Send something. If you have the person’s email address, a card with good wishes is helpful. Complimentary copies of With Great Mercy are available. Contact Kathy if you would like her to mail one.
Wednesday, April 21, 2021
Until mid-February, some time had passed since I received an email from someone who has read With Great Mercy, someone I don’t know. As readers, we have no way of knowing what is happening in the lives of writers. It is always good to know that we have helped, inspired, or entertained someone, depending on the nature of our subject. Although I have been writing fiction for a while, I still blog about cranial nerve disorders now and then. I stopped suddenly when I realized someone was stealing posts from my blog and refused to stop. My new website has gained some internet attention, so I will post new material on occasion.
Friday, March 12, 2021
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.
Monday, April 6, 2020
I know, I know, I quit blogging because someone is stealing my posts and using them as his or her own. Perhaps this entry will also be stolen. I have come to realize that if people are helped by what I write, then that is the real purpose of my reflections.
More than ten years ago, I began to write about my experience with trigeminal neuralgia and working on behalf of others who have it. I wrote, among other things, about social isolation. At the time, many people were not familiar with that phrase. I received quite a bit of feedback about it, the aloneness that facial pain can cause. People who have trigeminal neuralgia, glossopharyngeal issues, and other types of facial pain are well versed in loss. They often lose their jobs, their spouses, their homes, and their ability to speak clearly.
Now, with the corona virus, social isolation has become a common phrase, a way of living each day. People have lost their jobs and financial security. Some have relatives and close friends who have died.
When I worked at the TNA, the Facial Pain Association, people who were suffering told me how they would not wish their type of pain on their worst enemy. I often told them that perhaps the world be a better place if everyone had experienced this for just one day. They agreed. The intensity of despair that is created by being “electrocuted” throughout the face, the jaw, the eyes, and sometimes the neck- it causes one to change priorities and realize what really is important. It gives one empathy for others.
My world, in spite of the disability, became a better place because I realized how important love is. Most of all, I became aware of how I had taken things for granted. The woman who taught drama, English, and journalism- she couldn’t talk much of the time. She had to stay home, out of the wind (even a breeze) and away from a ceiling fan. She could not chew, wash her face, or brush her teeth. Social isolation and aloneness were part of each day.
Now that so many individuals in our country face social isolation, people will understand it better, what it is like to experience the aloneness. That doesn’t mean they will understand the intensity of the pain that cranial nerve disorders cause. I have a feeling, though, that this pandemic will give plenty of people more empathy for those who battle facial pain.
We all hope these days will pass. For many people who have trigeminal or glossopharyngeal neuralgia, it will not. I thank God for taking my pain from me, for healing me. Years after the TN pain left, I began to experience glossopharyngeal issues. It’s been almost two years now since my “glossy nerve” has caused me a problem. I’m thankful.
Although I am well, I’m staying home. No matter what, I still believe that love is stronger than pain.
Monday, October 1, 2018
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.
Thursday, June 11, 2015
My glossopharyngeal nerve sometimes causes stabs and jabs in my jaw. It can cause me to “jerk,” suddenly as though I have put my finger in a light socket. The pain sometimes expands to the tongue, and even a little bit of movement of it can trigger “electrocution” type pains. “Lightning bolts” strike through my ear, down my jaw and tongue, and into my throat. Swallowing is difficult and quite painful. When the pains hit my ear, I get extremely dizzy and can lose my balance.
The first time I experienced glossopharyngeal neuralgia, I thought I had a virus. My ear and throat burned, and they felt worse when I swallowed. I quickly made an appointment with my primary care physician, and he examined me. The doctor was already aware of my battle with trigeminal neuralgia.
“Your throat and ear look good,” he said. Then he noted that the pain followed the course of my carotid artery. He diagnosed me with carotidynia.
Carotidynia? I wondered what could go wrong next. And as the hours passed, moving my head became more difficult and the pain in my neck became more severe. I lay in bed, thinking I might actually have meningitis. It made sense: an outbreak of it had recently occurred in the school where I taught.
Being confined to bed with an illness is an invitation for the mind to wander into the darkest of places. So many of us have experienced hopelessness. What I tell you next is not to frighten you or to be morbid. I ask you to find humor in it with me. I secretly welcomed meningitis. Maybe it will kill me, I thought. I will go to Heaven and finally be free of this pain.
I didn’t have meningitis, and in a few days I was back at work and feeling well. I told my teacher friends about my short-lived death wish, and we laughed. Later, my neurologist discussed the carotidynia diagnosis with me and explained that I actually had glossopharyngeal neuralgia.
Dwelling on bleak thoughts is easy but destructive. Finding hope is a challenge for people who have cranial nerve disorders. For me, hope is my faith in Jesus Christ. I will discuss the reality of glossopharyngeal neuralgia and my faith in a future entry. The Lord remains faithful, and it is well.
Thursday, September 26, 2013
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?
- ► 2010 (42)
- ► 2011 (20)