Social Isolation: we aren't alone anymore

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.

Trigeminal neuralgia, face pain, and emotions

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 have been some of my best friends, but not everyone has email or text-messaging. Fax machines are temperamental. Just like fax machines, sometimes we humans with facial pain can communicate orally but 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 disability. 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.


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...

God bless you.

Nutritious no-fat smoothie with fiber

Most of us have tried a smoothie, but they often contain things that aren't too healthy. Here's a simple recipe for a thick "shake."

2/3 cup nonfat plain Greek yogurt
1/3 cup frozen or fresh berries
1 teaspoon ground flax seed
2 ounces cold water (if using frozen berries)
  or 1/4 crushed ice if using fresh berries
Sweetener (I use 1/2 teaspoon of Stevia)

If you are looking for another way to get more protein and fiber, summer is a great time to incorporate smoothies into your diet. They can be made in a way that they aren't too high in sugar, and they are simple to make. I put mine in a Shake and Take, but a smoothie can be made with a full-size blender or a hand blender.

The ground flax seed gives a smoothie more body. According to the Mayo clinic, it is also an excellent way to get fiber and mega-3 fatty acids. Flax seed improves digestion. Flax seed is sometimes used to help reduce total blood cholesterol and low-density lipoprotein (LDL, or "bad") cholesterol levels and, as a result, it may help reduce the risk of heart disease.  Click to read more of what Mayo clinic says about flax seed

Flax seed has a 4.5 grams of fat in two tablespoons, but only half a gram of saturated fat. This recipe has less than a gram of fat.

You can find other no-chew or easy-chew recipes if you search my blog. Hope you feel better soon!

If you would like to share a no or easy-chew recipe with us, please let me know. I'd love to feature you and your recipe.

Have you visited my website? Click here

The Americans with Disabilities Act

Thank you for your comments and emails about how fighting the pain caused by wind. Yes, trigeminal neuralgia and other facial pain conditions are disabilities. It's important to know why. I'm going to provide a link where I pulled the information for this entry. Let's take a look at how the Americans with Disabilities Act (ADA) defines disability:  

"Disability means, with respect to an individual, a physical or mental impairment that substantially limits one or more of the major life activities of such individual; a record of such an impairment; or being regarded as having such an impairment."

Knowing what the ADA means by impairment is essential to understanding what a disability is.

"(1) The phrase physical or mental impairment means --

(i) Any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genitourinary; hemic and lymphatic; skin; and endocrine."

Trigeminal neuralgia is a neurological disorder, mentioned above: "anatomical loss affecting one or more of the following systems: neurological."

If we back up to look at how the ADA defines a disability, we see that the impairment must substantially limit a major life activity. Here is the definition for a "major life activity:"

 "(2) The phrase major life activities means functions such as caring for one's self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working."

Do you often have difficulty caring for yourself (cooking, brushing your teeth, entering an environment because of the wind)? Speaking? Working? 

Invisible disabilities, such as trigeminal neuralgia, are valid. Here's the link to the portion of the ADA quoted. Scroll down to Sec.36.104 Definitions Americans with Disabilities Act

Take good care!

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Loss Part 3: Identity

Do you ever feel as though you are sitting on the sidelines of your own life? It's not unusual for people who experience pain and disability to feel as though they have somehow lost themselves. I remember not wanting to believe that I had changed, but I had. Many of my strengths had turned into weaknesses. Some of my abilities had become disabilities. I was in the middle of my life and didn't know where to go or what to do next. All I knew was that I didn't want to stop but had to. I loved teaching drama, but I had to let it go.

Quick wit, the ability to concentrate, and physical prowess can seem to evaporate if the pain comes to stay. Medications to help facial pain can cloud our concentration, obscure our ability to respond quickly, and cause physical issues such as balance and sluggishness. Career and volunteer activities may become a drain instead of a challenge.

If we have trigeminal neuralgia, neuropathic, or orofacial face pain, we may begin to experience social isolation. This can be spurred by the environmental barriers that are unique to people with face pain: breezes that cause electrocution-type pains and noise or vibration that causes the pain to strike. Isolation and loneliness can also be caused self-consciousness. Some individuals gain weight with face pain, especially because of some of the medications' side-effects. Others may be unable to brush their teeth or receive dental care on a regular basis.

Things that seemed so intrinsic - like a beautiful smile- now seem to escape us, things like a career or a desire to grow a family. The losses caused by pain can be distressing, but there is hope. Hold onto it. Don't let go.

Finding the best treatment takes a while because of the idiopathic nature of the pain. What works for one person doesn't work for another. Medications that seem to turn us into "zombies" also require a period of adjustment. Ten years ago, when I started taking an anti-seizure med, the trigeminal neuralgia pain left. I slept like crazy for three months. Then the feeling of sleepiness left, and the pain stayed away. (Can I tell everyone how disappointed I was when I developed an allergy to this medication?)Another thing that takes time is prayer. We normally don't get answers overnight. A period of waiting is almost always involved. Hold onto hope. Hold onto your faith. Continue to wait.

Waiting is one of the most difficult things we can do. Being in limbo places even more pressure on an individual who has experienced so much loss. It is important to remember this: we have changed but we have not lost ourselves. We have not become someone else.


The challenge we face is learning how to make the best of our lives after we have experienced losses associated with facial pain. There are many ways to do that. One way is to address career concerns. Every state in the U.S. has a vocational rehabilitation program that receives federal funds. It's there to provide education or training for people who have disabilities. People with face pain qualify. Because trigeminal and neuropathic facial pain are rare, you might want to prepare information for the rehabilitation counselor who will interview you. Make a list of things that cause you pain, such as talking, sitting in air conditioning, or being in a noisy environment. If you are having issues caused by medication, list those also. If you are employed and want to stay with your company, the Job Accommodation Network (JAN) can help you and your employer make arrangements to help you stay where you are. JAN is part of the US Department of Labor. They have a website and a toll-free number.

One important thing to focus on is what you can do, not what you cannot do. I've been in situations that were overwhelming. It's hard to recognize the need to make a change. Letting go doesn't mean losing. It can mean that we are going to find a new and better way.

Call me crazy, but I think the world would be a better place if everyone were to experience trigeminal neuralgia for just one day. We'd live on a more compassionate environment. We'd have more empathy for others. People with face pain have learned how precious life is. It's something we can teach others. Even in the midst of our pain, we can help make the world a better place.

I want to thank the Lord for answering so many of my prayers. When I lose one thing, He always gives me something better. It takes me a long time to recognize the blessing, but it is always there.

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