The Drawstring

When I was a child, I had a Chatty Kathy doll. I'll never forget when the dolls became available. Not only did this doll have my name, but she also had my hair, my face, and my freckles. Being the loquacious child that I was, it was fun to have a partner who would talk with me. I just had to pull her drawstring, and I did so often.

It wasn't long before Chatty Kathy's drawstring broke from overuse. It wasn't abuse, just my enthusiastic desire to talk with her. I kept the doll long after she was mute. I wish I still had her today because I cherish the memory of her.

Now I would be content just to hold this cherished item for a few seconds. I've learned that it isn't the spoken word that is so important. With my jaw so often dysfunctional, I rely on touch, typed words, and eye contact. They've become more meaningful to me than spoken words. Back in the day, I could talk all I wanted, even if my doll could not. Now I understand her so much better.

Chatty Kathy's value was limited once the drawstring broke, but not so for humans who cannot speak. Having a disability does not mean that we are worth less. Our value holds. Not everyone will see this about you, but it is true. As individuals with disabilities, we must believe in ourselves. We must know that although our abilities have changed, our value has not. It is the core - the melding of heart, spirit, and mind - that forms the essence of an individual. We don't have to allow ourselves to be discarded like a child's broken doll.

One of the best ways to overcome depression that can be secondary to an illness is to network with others who have similar experiences. Not only will you have the opportunity to be supported, but you will find yourself able to support others. Our strings might be broken, but our spirits can be revived.

Barometric pressure and neuropathic pain

It's been great to have some rest and to be able to control my environment. That means no more than 15 minutes at a time for my computer sessions, very little talking, and almost no chewing. There are other things on the list, but these seem to be the most important. Today my neurologist and I had a talk about how being able to control my environment and the ability to get better.

I mentioned that the one thing I could not control was the barometric pressure, and it seems to trigger the pain as much, if not more, than anything. During the times when the conditions are just right (should I say just wrong?), the nerve pain hits my mouth, jaw, and my neck. The foreboding sky, the one that looks like nighttime during the day, seems to rock my world.

After my doctor's visit today, I ran into the grocery store for just a couple of things. I live in a small town, and people are friendly here. The minute I walked in, a lady whom I had never met wanted to engage me in conversation about food. I knew better than to open my mouth. I had to get in and get out of the store and to let my jaw rest completely. There's no need to explain it to someone. They'll think I am crazy. Plus, if I am going to talk, I might as well talk to her about what she wants to talk about. After all, a zap is a zap regardless of the reason for having it.

When I was a kid, I remember a song called Silence is Golden. I didn't get it. As a loquacious individual, I have preferred a life filled with conversation laughter. Forget about interruptions, the more spontaneous, the better. That sometimes seems like another life, another person. I am thankful for my quiet times, and they far exceed the times that I spend talking to others. I'm still grateful to communicate, but I am even happier that I don't have to.

Grateful and thankful I remain, even in the midst of the storm.

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?

Have you visited my website?

The Valley Called Trigeminal Neuralgia

This entry is also from my With Great Mercy blog and website.

November 3, 2008

Then the LORD took hold of me and said, “Get up and go out into the valley, and I will speak to you there.” So I got up and went, and there I saw the glory of the LORD… Ezekiel 3:22-23.

After reading my last blog entry, several people have asked me how a valley of tears could become a place of refreshing. It doesn’t make sense if we trust only our senses and our logic. Through our faith in the Lord, though, we learn how a personal valley can become a place to witness God’s glory.

Ezekiel – the prophet whom God chose to be watchman for Israel – had no choice but to warn the Israelites about God’s upcoming wrath. No one wants to hear gloom and doom, and this made Ezekiel’s task a painful and dangerous one. Yet he wanted to be obedient, and he was. It was in the midst of this obedience that God led Ezekiel into a valley.

The valley represents a place of loss, of weeping, and of mourning. No one wants to be there. Let’s face it: feeling good feels good. Feeling low, sick, bad, unloved, grieved, or feeling pain doesn’t feel good. Our flesh has a disdain for the valley. But sometimes our spirit cries out for it.

We’ve heard the adage about being down so low that there is no place to look but up. I think that adage has a lot to do with valleys. Down so low, we’re usually there all alone. That’s when we really long for understanding. No matter who we are or what we need, God understands. In our aloneness, we have the chance to focus on what we can gain from the situation and to ask how we can walk out of the valley and back onto the mountain top.

Before we can ascend again, we need to see the beauty of the glory that shines down into the valley. When we’re on the mountaintop, the glory makes it difficult to see anything but ourselves and what is directly around us. But in the valley, the glory becomes so profound. We can see more of God’s creation, and in our solace we can also have a greater experience with Him.

When Ezekiel was in the valley, the Lord gave him some instructions. They were not easy to follow, but Ezekiel knew they were from God. He knew because he had just experienced God’s glory. A personal experience with God helps us while we remain in the place of lowness. Having an intimate experience with the Creator fosters spiritual renewal. Our circumstances may not change, but our spirits are revived by the glory.

Pain: winning

This entry is also from my With Great Mercy blog and website.



November 3, 2008

Then the LORD took hold of me and said, “Get up and go out into the valley, and I will speak to you there.” So I got up and went, and there I saw the glory of the LORD… Ezekiel 3:22-23.

After reading my last blog entry, several people have asked me how a valley of tears could become a place of refreshing. It doesn’t make sense if we trust only our senses and our logic. Through our faith in the Lord, though, we learn how a personal valley can become a place to witness God’s glory.

Ezekiel – the prophet whom God chose to be watchman for Israel – had no choice but to warn the Israelites about God’s upcoming wrath. No one wants to hear gloom and doom, and this made Ezekiel’s task a painful and dangerous one. Yet he wanted to be obedient, and he was. It was in the midst of this obedience that God led Ezekiel into a valley.

The valley represents a place of loss, of weeping, and of mourning. No one wants to be there. Let’s face it: feeling good feels good. Feeling low, sick, bad, unloved, grieved, or feeling pain doesn’t feel good. Our flesh has a disdain for the valley. But sometimes our spirit cries out for it.

We’ve heard the adage about being down so low that there is no place to look but up. I think that adage has a lot to do with valleys. Down so low, we’re usually there all alone. That’s when we really long for understanding. No matter who we are or what we need, God understands. In our aloneness, we have the chance to focus on what we can gain from the situation and to ask how we can walk out of the valley and back onto the mountain top.

Before we can ascend again, we need to see the beauty of the glory that shines down into the valley. When we’re on the mountaintop, the glory makes it difficult to see anything but ourselves and what is directly around us. But in the valley, the glory becomes so profound. We can see more of God’s creation, and in our solace we can also have a greater experience with Him.

When Ezekiel was in the valley, the Lord gave him some instructions. They were not easy to follow, but Ezekiel knew they were from God. He knew because he had just experienced God’s glory. A personal experience with God helps us while we remain in the place of lowness. Having an intimate experience with the Creator fosters spiritual renewal. Our circumstances may not change, but our spirits can be revived by the glory.

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

Emotions and face pain

As someone who has counseled people with facial pain, I understand that it is not uncommon for someone's emotions to reach a nadir. It doesn't matter if it's my pain or the pain that belongs to someone else. So I am always concerned when I hear that someone with facial pain has emotional issues. Of course we do. What others take for granted in every day life has been taken from us, and no one seems to understand the intensity of the pain. Except the people who have it...

I wish that I could explain to the world what it is like to be unable to communicate orally with others and to not know sign language. E-mails and text messages are some of my best friends, but not everyone has email or text-messaging. Fax machines are temperamental. Just like fax machines, sometimes we can communicate orally and other times we cannot. We aren't dependable, regardless of how much we would like to be.

Pain of any type can bear on our emotions. Face pain can cause a person to have bad breath and poor dental hygiene (no brushing for days on end sometimes), robs a person of the ability to share a kiss, and going out to eat is just unthinkable. When people experience this much isolation, pain, and disability... well he or she just may get emotional.

Why some people think that the emotional issues cause the pain, I'll never know. Perhaps it's because they have never experienced these issues. I've always thought that the world would be a more compassionate place if people could experience trigeminal neuralgia or other types of face pain - just for a day.

Several types of medical issues cause face pain. It could be trigeminal neuralgia, myofascial pain, neuropathic pain, or a jaw problem. These things travel along the trigeminal pathway, and they have a life of their own. We don't know when the pain will come or go. We just know that we are out of commission until it settles down.

Recently I had to make an important decision. I knew I was too ill to think rationally. I tried to explain this, but I was pushed to make the decision. My response was emotional because my pain level was high. Now the decision is made, and I am glad it is behind me. I get emotional when I cannot speak, brush my teeth, open my mouth, or stop the pain.

If you get emotional because of facial pain, let me reassure you that it's normal. Take good care of yourself. If you are able to talk, you may want to see a counselor. But you may not be able to talk...

What I really like about prayer is that I can talk to God without saying a word. He understands why I am emotional in times of pain. I am thankful for my faith in God.

Unfinished business

Have you ever had to return to a place you once loved? It's happened to most all of us, having a relationship or situation come to a close. We leave part of ourselves behind forever, the intangible investments we made. Today I have to retrieve my tangible items. Things - tangible as well as intangible - can deter us in our paths.

Last week, I had to go to Jacksonville for a medical appointment. The purpose of the visit was to have my MRIs read and the diagnosis made. My husband and I were almost ten miles down the road when I remembered that the MRIs were on my kitchen counter. We had to turn around to retrieve them.

The MRIs represented terrible pain. I had to hold something in my mouth and bite down on it 7 minutes. Well, it was so huge that biting down was my only option. I had just come through 1.5 weeks of muscle spasms that were caused by the exam. The day after the MRI, I felt worse than ever. My jaw locked again, and the discomfort was ferocious.

Today I will have some pain as I turn back around to get some things that I can hold in my hand. I'd love to keep traveling and not look back, but I need the things I left behind.

I think it is going to be alright, though. I had so much pain yesterday from the barometric pressure, but today is much better. So it is time to resume the good fight, to finish this course. I thank God for watching over me.

Valley of Refreshing Springs

I posted this entry on my website October 2006, and I would like to share it with you.

When they walk through the Valley of Weeping, it will become a place of refreshing springs, The autumn rains will clothe it with blessings. Psalm 84:6


Have you ever noticed how much better you can feel after having a few good cries? Sometimes it seems that one cry just is not enough. I've been pondering why we sometimes go through a valley of tears instead of traipsing through a mere puddle.

Pain builds up, the dam breaks, and the tears fall onto the ground until they wash out a portion of earth. Then we stand in the valley, waiting, not sure which direction we should go. Even worse, we might not feel as though we can go in any direction. We’re stuck right where we are.

Nobody gets out of a valley without walking uphill. It isn't easy, but we have the Lord to hold our hands. He’s not going to yank us out of the valley, though. Maybe we can get motivated to walk out of the valley if we remember the tears that got us there, the tears that helped wash away some of the hurt, the tears that cleansed our broken hearts.

We can't undo the tears or the valleys, but we can choose to make that uphill walk. We can choose to hold tightly to the Lord’s hand.

Sometimes I have to think about the good things that came from the tears. My tears that hit the ground fed the plants and other beautiful living things. My pain and tears gave life to something else. I am confident that God does not let our pain go unnoticed. I'm still climbing upward, and Jesus is holding my hand.

Missing my friends

Back in the old days - before blogs, twitter, google, facebook, and email - people could fade into the distance or fall off the face of the earth. We wondered what happened. Closure seemed as impossible as continuing the friendship. The old days had some good points, but modern times have so many advantages. Recently I left a place of employment, and I had "met" so many wonderful people along the way. These individuals either had or loved someone with trigeminal neuralgia, glossopharyngeal neuralgia, or other types of face pain.

I miss these wonderful people.

One of the marvelous things about computers is that we can get so much accomplished without speaking. I'm having a very difficult time speaking these days, but I would still like to voice my care for people with face pain.

Most of us have been to a point where we know we could no longer continue, where we had to step back and take care of ourselves. I am there now, but I miss you.

Claire Patterson, the founder of the Trigeminal Neuralgia Association, says that only the nicest people get face pain. Claire speaks the truth. I will always be grateful to her for raising a banner to fight face pain and to help those who have it.

So this is just one more blog that will let googlers and other Internet users know that they aren't alone. Don't give up. Hold onto hope.