The leap

This past week I purchased an Xbox Kinect in hopes of taking off a few pounds off via the Biggest Loser game. Why an Xbox and not the gym?

The closest gym (well, a clean and well lighted place) is approximately 30 miles from me. I've done the trek before, but the cost of gas and the time factors are more than I can afford at this time. So I decided to work out at home. For the past week, I've lunged, kicked, and squatted with Bob the Trainer. It's been no fun at all, but I could tell I was getting a good workout.

If you follow my blog, then you may know that I recently lost my aunt, Julia Mae Patterson. (She liked to be called Judy. When I was a child, she told me it took me all day to say Julia Mae. Our family's first language is Southernese.) Since Judy's death, I have felt almost immobilized at times, paralyzed in grief's thick fog. I want to call her so I can tell her I miss her, that I don't know what I'm going to do without her, and to laugh with her about something humorous that happened in her ICU room the day before she died.

I've asked myself how I could blog about facial pain or help anyone when I was drowning in my own sorrow. Unable to move through my sadness, I was determined to exercise. But why couldn't Bob the trainer cut me a little slack? Maybe I really can't get my form better right now. He was downright annoying at times, and I gained a new respect for the contestants on the show. They are not whining, after all.

After a week with the Biggest Loser, I opened the adventure game that was included with the XBox. The moment it cued, I transformed. Adventure was what I had been craving. I slapped rally balls against the wall with my hands, my knees, my feet, and my body. And when the game was over, it flashed pictures it had taken of me as I played. There I was, leaping into the air, smiling. And it gave me the incentive to hop into the games river raft, the underwater aquarium, and through an obstacle course.

What shut me down? Perhaps I haven't fully recovered from the last time I reached for the gold. I didn't get a prize, but I got injured. Landing was painful, and healing has been slow.

So often in life, we take steps of faith. We reach out to someone, donate time or money, or help a friend with a project. But how often do we jump into the middle of the action? I've learned to be careful.

Caution has been holding me back, and I wonder about my friends with facial pain and other issues. Can you say the same? We protect ourselves, accepting stringent limits and finding more and more things to be out of our grasp.

It's time for me to risk again, to leap into action. I'm not sure what will end up in my hand, but the exercise will benefit me. And someone else, I hope.

Thank you for your emails, your posts on Facebook, your calls and cards. You remain in my prayers, and I thank God for you.

Have you visited my website?

My aunt

I have an aunt, my mother's younger sister, who is in ICU. Her prognosis is not good. I'm praying for a miracle, but I have confidence that the Lord knows best.

I won't be writing anything new in my blog for a while, but feel free to contact me. I'll get back to you as soon as possible.

I'll post updates in the comments below. Thanks for your prayers, your support, and your love.

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.

Decisions that can't be undone: focusing on good things. Part 3

The blame game makes it difficult for us to move forward. It's unhealthy, physically, mentally, and emotionally. We cannot turn back time, cannot undo our decisions, cannot snap our fingers and make the situation go away.

The key to having a good life in spite of the pain is to recognize and focus on good things. I'm continually amazed by my friends who have trigeminal neuralgia and how well they cope. Most of them have had procedures but still have pain. And my friends who have neuropathic facial pain also give me a reason to smile. Many of them don't know the cause of their pain, but they manage as best as they can and find pleasure in their lives.

Happiness can be found if we look for it. Most days, we understand that things can be worse, and some days, it takes every ounce of strength we have just to endure the pain.

Although I struggle with difficulties related to my jaw joint, I remember the terrible days of trigeminal neuralgia, the electrocution-type pains, the inability to brush my teeth, to wash my face, to speak, to walk out of the house, or to sit under a ceiling fan. The discomfort I feel now cannot compare to the suffering related to TN.

One of the challenges that people who have trigeminal neuralgia face is that others don't understand the intensity of the pain, which is believed to be the worst pain known to humans. It's discouraging and isolating, but we can support one another and know what the other person is experiencing. We can offer prayers, write emails, become friends on Facebook, or tweet with one another. You may also leave comments here to comfort and support individuals who read my blog.

Those of us who have been involved with supporting others have held the hands of hundreds, maybe thousands, of people we have never touched. We help one another overcome the fear of the pain.

Life may never return to what it was before we had the pain, but we can continue to find its beauty. One of my favorite poems is Wordsworth's "Ode: Intimations of Immortality." I fell in love with this passage when I was a teenager, not old enough to understand how important it's message is. But today, I comprehend it much more fully.

Though nothing can bring back the hour
Of splendor in the grass, of glory in the flower;
We will grieve not, rather find
Strength in what remains behind...


We're not as young as we once were, but we have more wisdom, more compassion, and more endurance. Let's find strength, not only in what remains behind but also in what lies ahead.

Have you visited my website?

Experiencing and Recognizing Loss -Disability

Let's talk about loss. Depending on who we are and what we have lost, the definition of it can change somewhat. If we are talking about a personal loss, we're trying to help someone truly understand our plight. That's when it becomes necessary for us to accurately portray what the loss involves. This is where the dilemma arises. Do we depart from our efforts to "think on the sunny side of life" and expose our inner bellies of pain and grief to someone else? We wonder if the other person can be trusted with our reality. It's a risk when we invite someone in to really hear the truth about the loss that is so personal to us.

I'd like to digress a little bit and address the word loss. In school we learn not to use the same word over and over again in a paragraph or even in an essay. I like to ignore that rule in my blog. If we want to deal with something, how can we do so if we call it by another name? Why sugarcoat it? It's not just an issue, is it? It's loss. Something we once had is gone. Period. We want it back, but it eludes us.

Because loss is such huge subject, I want to write about it for a while. Today I'll try to tackle one of it's sub-topics: disability. It's a topic I can really get fired up about.

Disability benefits are necessary for some people with facial pain. This is true for people with trigeminal neuralgia, orofacial pain, neuropathic facial pain, and face pain that has been named something else. I don't have to tell my readers why their pain causes dsyfunction and disability. They already know. Let's talk about what happens when we are forced to explain it to someone who has not experienced it.

No one - absolutely no one - wants to have facial pain. I have talked to hundreds and hundreds of people. They're all interested in one thing: "How do I get rid of this?" So if you are going through a disability application process, whether private or through Social Security - you'll be asked to explain how your pain affects your ability to work. It's a fair question. But the answer isn't fair.

Most people with facial pain do everything they can to make their lives as normal as possible, as enjoyable as possible. Those of us who understand that a mind-body connection (and that's MOST of us) exists want to think about things that encourage us to keep going. We want to think about the wonderful things we still have, even if the wonderful thing boils down to the fact that we are still alive.

So what happens with the time comes to explain the pain to people who review disability claims? We have to reach into our minds and think about the loss, the things we cannot do but would like to do. We have to remember that once we identified highly with our jobs and our ability to perform. Whether we are in the business world, teaching a class, or counseling others, work is all about fulfilling expectations. To walk away from something that fuels our self-esteem and bolsters our identity is devastating. We lose a part of ourselves. We also lose income.

I have spoken with many people who have lost their jobs, their homes, their medical benefits, their spouses, their self-worth. The list of losses goes on and on. Let's get even more personal: they've lost their ability to kiss, to speak, to chew, to swallow, to concentrate, to remember important things, to brush their teeth. It's difficult to stop naming the losses.

If people are trying to cope with everyday life, chances are their losses don't live on the tips of their tongues. People who have pain are either trying to maintain their ability just to get through the day or trying to move on with their lives. Why bring up the losses that cannot be changed? Because we have a valid claim that we must substantiate.

The thing I hate about the disability benefit process is that we have to justify being sick. It's much healthier for us not to think about it and to focus on the good things in life. But to get the money - which we deserve - we have to think of our worst case scenarios and expose our vulnerabilities. It's just not good for us.
We're putting ourselves out there to be judged. It's frustrating and causes feelings of guilt and helplessness. We've already experienced these feelings because of the pain. Now here they come again as we try to justify our needs. With the explanation emerges the feelings we try so hard to suppress.

We feel so alone, like failures. But we aren't either one of those things. We are coping with something many people are afraid to understand. They don't want to let it sink in. After all, could it happen to them? Will they take the chance to identify with your situation? Probably not. You already know this, don't you?

There's a time and place for everything, something else you already know. The time to make the loss and the pain clear is during the disability application process. It's not fun to share the pain. It's going to feel crummy, but you're surviving the pain, and you'll survive this process.

I'd love to hear from you, about your losses. It may help others if you post them here on this blog entry, too. God bless you and may you regain what you have lost.

For more information on loss and disability issues, please visit my website: www.withgreatmercy.com

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.