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.

Making Mother's Day special for someone who experiences facial pain

Celebrating Mother's Day with a mom who has trigeminal neuralgia or neuropathic facial pain can be complicated. But I remember a wonderful Mother's Day that occurred when I was ill. It was fabulous in spite of the pain, my inability to chew, and the fact that I was experiencing extreme social isolation.

My daughter and her husband came to my home. I didn't have to concern myself with facing the world, about applying cosmetics, or accomplishing oral hygiene. Dan, my son-in-law, brought food with him and prepared a meal for me. At the time I had not developed an allergy to eggs, and he brought "Pour a Quiche," which he baked in my oven. No chewing was necessary because I avoided the crust. I cannot remember the side dishes or the dessert, but I recall the meal was delicious.

After brunch, the family and I settled into the living room and watched a movie. I fell asleep while they were here, comforted by their presence. Comfort may be the best gift someone can give a mother who is experiencing unrelenting pain. It might mean letting go of a traditional Mother's Day and designing one to suit a mother's needs.

Simple things can be most important to someone who has lost much. If you would like to prepare a meal for a special lady you can find some "no-chew" recipes if you go up to the Google search bar at the top of this page.

Giving Mom a reprieve from social isolation is another way to bring comfort to her life. Although she may not be able to talk much, she can listen. You might want to read to her, a favorite poem, a passage from the Bible, or a written memory of a special moment you've shared.

Because people who have trigeminal neuralgia often depend greatly on their computers and the Internet, you may want to ask Mom if hers is in good working order. If not, taking care of maintenance is an excellent gift.

Most of all, don't underrate the power of touch. She'll like it if you gently squeeze her hand. If she has a side of her face that doesn't have pain, you can place your cheek next to hers. Many people who have trigeminal neuralgia crave touch, but they fear being touched in a manner that evokes pain. Quiet comfort is best. Too much noise, whether it's loud conversation, music, or television can create further neurological distress.

Invest time into finding the best card you can. It will linger long after your visit, giving Mom a reminder of your visit.

I'll always remember the tough years and how my family made the day special, tailored to my needs. My mother made the day about me, forfeiting her own desires. I love you, Mama.


Love is stronger than pain.

We'd love it if you share your desires or gift ideas with us.

 Have you visited my website?

Cold, Christmas, and Comfort

For people who have trigeminal neuralgia, Christmastime can deliver a double whammy. The pain caused by the cold can be paralyzing, making work and social interaction burdensome. Sometimes just surviving the pain is the best one can do.

Just when we're expected to enjoy "Walking in the Winter Wonderland," we are forced to retreat. The best time of year sometimes becomes the cruelest. And this is true for many, not just for people who have facial pain. The pressure of expectations weighs heavily on our minds, hearts, and spirits.

We're not going to be perfect, our friends and family aren't going to be, and perhaps the holiday will be less than idyllic. And that's okay. The key to surviving the imperfection is to find solace.

Finding comfort in one's situation can seem impossible, but it is doable. One way to start is to trim our list of activities. If you've gone to the neighbor's Christmas party and taken your special homemade divinity every year, it may have become an expectation. Expectations equal pressure. When we decline an invitation to a gathering, we often hear and sense others' disappointment. But we can get past it.

We must take care of ourselves. People tell one another to do this all the time, but often the phrase is uttered without considering its meaning. This Christmas, let's embrace the message.

Take care of yourself.

To fend off depression that can result from facial pain and as well as holiday stress, make a plan. Take a mental inventory of things, tangible and intangible, you find comforting. Write them down. Find them if you don't know where they are. Be prepared to spend a few hours alone when the rest of your family is socializing.

Need some suggestions? Make a list of music for your I-Pod especially for this time, a list that may include anything from tear-jerking songs to happy holiday tunes. You've experienced a full gamut of emotions in your life, and it is acceptable to feel them now. Believe you will have better times, less pain in the future. Unless we believe things will get better, they won't.

Put your favorite DVDs by the player. Brew a pot of your favorite tea or coffee. Peruse your favorite photo album. Prepare an online list of the funniest videos you've seen on YouTube, and have them ready to make you laugh.  Have something to read that's easy and brings you comfort.

Now is the time to schedule ways to connect with people we love. If your family or friends are distant, make a date to text them if it is painful to talk. If not, make a date to Skype or call someone special.

Recognizing our limitations also helps us let ourselves off the "expectation hook.' Sometimes getting out or pushing through can help us feel better, but sometimes it makes pain worse. No one can make these decisions for you. You are the best judge, the best predictor of the outcome. It's important to resist the pressure of going along with everyone else if you believe the activity will trigger more pain. Stand your ground: take care of yourself.

As individuals, we find solace in different ways. What brings you comfort? Your comment may help someone else.

Have you visited my website? www.withgreatmercy.com

Eye: the first division of the trigeminal nerve

Years ago, when I was new to the world of trigeminal neuralgia, I was visiting my neurologist at the Mayo Clinic in Jacksonville. He asked me if I had eye pain, and I was shocked, thinking he could read my mind. I didn't realize that he asked because eye pain is so problematic for people who have trigeminal neuralgia. And until then, I thought the "discomfort" was my imagination or just referred pain from my jaw and cheek.

 Sure, I had seen diagrams of the trigeminal nerve and noticed that one of it's divisions is located in the eye area. But I didn't want to face the reality that my eye might be affected. As time progressed and the pain became worse, my eye bothered me more.

Sometimes I felt as though my eye would pop out. The pressure and the pain were terrible and it made reading difficult, stealing one more ability from me. And isolation spread itself through my life like a cancer that refused to be arrested.

This is where my story of hope begins, hope that someway somehow God would intervene and take trigeminal neuralgia from me. I prayed that I'd have the courage to move forward with a surgery or that the pain would stop. I knew all about TN going into remission, and I asked please Lord. Let it go into remission forever.  In October 2004, the pain left.

I still have jaw joint pain, but I am thankful it's not trigeminal neuralgia. And it was great to begin life again. Socially, it's been difficult. I live in a small town. People had never heard of trigeminal neuralgia, and they thought I was being a drama queen. After all I had been a drama teacher. They never understood the validity of my disability.

Yesterday, I was prescribed contact lenses. Today, unlike yesterday, I've been successful at putting them in and taking them out. This process is easy for some, but I've always been a little nervous about putting eye drops in or getting close to my eye.

After several attempts yesterday to put in my new contacts, I thought I wouldn't be able to stop my strong reflex to blink. But today I got them in just fine. I put one inside out and had to take it out and put it back in again. I know I can do this.

The entire time I struggled with the simple procedure, I kept thinking if I can get through trigeminal neuralgia I can learn to do something simple like put in contact lenses. It gave me the incentive to persist.


The disability known as trigeminal neuralgia causes us all to learn that we are stronger than we imagined. How has the pain helped you recognize your strength? I'd love to hear your thoughts. Comments are welcome.


Have you visited my website? www.withgreatmercy.com

No chew recipe: reduced fat macaroni and cheese (Gluten-free)

3 cups brown rice pasta, overcooked
1 1/4 cup reduced fat (2% or less) shredded cheddar cheese
2/3 cup nonfat plain Greek yogurt
1 egg white
1 tablespoon grated parmesan cheese
1 tablespoon ground flax seed
1/2 teaspoon sea salt
Nonstick cooking spray

Overcook the pasta until it's very soft and drain well. Let it cool. You can put it in a food processor or blender to chop it into fine pieces or you can use your hands to break the pasta into small pieces. I used my hands because I wanted one less item to clean-important if one is not feeling well.


After the pasta is finely chopped or shredded, add 3/4 cup of cheese and all the other ingredients. Mix well (You can add more cheese if you like, but I used this portion in an effort to control the fat content of the recipe.) 

Spray casserole dish with nonstick cooking spray. I didn't want to heat the oven too long (it's so hot!) so I divided my mixture into two smaller baking dishes (holding two cups each), requiring less cooking time.

If you've divided your items as I did, cook them at 350 degrees for 20 minutes, pull them out of the oven and top with the remaining cheddar cheese.

If you've put your mac and cheese mixture into one casserole dish, you'll need to let it cook 25 to 28 minutes before you top with the cheese.

In less than five minutes (when the cheese melts), your mac and cheese is ready to be taken from the oven. Let it cool for five minutes before serving. Four portions.

I'm eating mine today with tomato wedges because it's a "good chew" day. Although I no longer have pain from trigeminal neuralgia, I still have a temperamental jaw that sometimes does not allow me to chew.


You may notice that I often use ingredients like ground flax seed and nonfat plain Greek yogurt. They're easy to keep on hand and simplify shopping. I like to use brown rice pasta because it is gluten-free, and it has more fiber and texture than white enriched pasta. It's a little more expensive, too. You can also substitute your favorite pasta.

To learn why I prefer Greek yogurt, see a comparison here http://kathytaylortrigeminalneuralgia.blogspot.com/2010/07/yogurt-whats-difference.html  . According to the Mayo clinic, ground flax seed 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.

You can find other no-chew recipes on my blog by using the Google search tool at the top of this page. I am hoping you will feel better soon. Take good care and may God bless you.

Have you visited my website? www.withgreatmercy.com

Hospital Zone, respite, and answered prayers

In the past week, my Mom has needed emergency care twice. Yesterday my daughter had major surgery, and she had a procedure that lasted several hours. I hugged her at 10:30 a.m. and did not get to see her again until about 5:00 pm.. Last night, I slept in a chair in her hospital room.

Today I came back home ( a 1.5 hour drive) only to learn that my Mother needed to go back to the same area I just left so she could get treatment for her own emergent medical situation. Because I had very little sleep last night, I called my uncle, and took my mom back part of the way, not far from his home. He took my mom to the opthamologist, and I came back home to rest. Although I offered to pick my mother back up at his house, my uncle gladly brought her back home after her treatment was accomplished.

The good news is that both my Mom and daughter will both be fine, and I appreciate everyone's prayers. I'll be blogging about trigeminal neuralgia and facial pain soon but I'm going to take a couple of days to get some rest. A caretaker's stress can be high, and I remember the days when people took care of me. I'm glad I have a chance to give back a little caregiving in return.

We all have limits, and it's important to recognize them. Today I knew I was not the best candidate to take my Mom for treatment. It's not easy to let go, but one person cannot carry all the weight. If you are caring for someone who has trigeminal neuralgia or an extended illness, get support for yourself. You will need a respite, a chance to rest or take care of yourself. Emergent situations shouldn't overlap, but sometimes they do.

Thanks again for your thoughts and prayers. A big shout of thanks I give to my friend who put me up for then night preceding my daughter's surgery. As Claire Patterson, the founder of the Trigeminal Neuraglia Association has been known to say: only the nicest people have facial pain. It's not a direct quote, but she's right.

Surviving the dark places

Pain often brings isolation, and it is no one's fault. The person who has an illness doesn't feel like talking, socializing, or maybe even getting dressed. You have to cope with the stress that wreaks your body. And others don't know what to do.

Even if you, in all your pain, reach out for others, you may still experience social isolation. One reason is that people do not want to get to close to suffering. It's frightening to think about illness and how it could happen to them. Their lives are already stressful, and they withdraw from you.

You feel alone, wondering how God could allow you to suffer. Has he left you?

No, God has not left you in your time of distress. Perhaps the pain seems bigger than God, but it is not. Be assured that He is with you. If you need assurance, take a look at Psalm 138:


⁸ If I go up to the heavens, you are there;
       if I make my bed in the depths, you are there.
    ⁹ If I rise on the wings of the dawn,
       if I settle on the far side of the sea,
    ¹⁰ even there your hand will guide me,
       your right hand will hold me fast.
    ¹¹ If I say, "Surely the darkness will hide me
       and the light become night around me,"
    ¹² even the darkness will not be dark to you;
       the night will shine like the day,
       for darkness is as light to you. 

In your pain and aloneness, cling to things and people important to you. They may feel as though they are part of your past, but consider them part of your future.  Fight the good fight of faith: worship God, talk to Him, and focus on God's ability to bring you through this. Be prepared to be lifted up by the Lord, to rise on the wings of the dawn.

Loss Part 4: Social Isolation

Everyone has times of loneliness; it's part of the human condition. We can be lonely in the midst of a crowd or as part of a family. Social isolation is much more than loneliness. It takes hold of us when venturing outside our homes or allowing someone in our dwelling becomes threatening. Sometimes people with facial pain and other disabilities are isolated because an illness prevents them from getting out of the house or from interacting with others.

Isolation can occur for a number of reasons. Because of the disability, we lose confidence in being able to interact successfully with others. Sometimes exhaustion plays a role in becoming isolated. Other times, we experience rejection from family members or other individuals who mean a great deal to us. Ridicule from co-workers or fellow students can also be a factor. After all, why would someone cover his or her face with a scarf on a day with wonderful cool breezes? Sometimes its the way that strangers react to us that can cause us to become discouraged.

Social isolation can be overcome, step by step. One of the things that we can do is to join a support group for people who have pain. If there is not one in your area for facial pain, you may want to contact pain organizations such as the American Chronic Pain Association, The American Pain Foundation, or Rest Ministries. There are also on-line groups for people who are not yet ready to venture from home.

If you are looking for a way to get out of the house, you may want to volunteer for an organization. Find one that will be really flexible with your schedule, and make sure that the activities don't trigger your pain. You can do more solitary activities like shelve books in a library or you can choose something more social such as volunteering at a church or school. I recommend that you ease into activities like this, working no more than two to four hours a week until you are confident that you can handle more. You may also want to avoid volunteering for one-on-one scheduled activities. If you are having pain at the time of the appointment, you may feel pressure to meet the schedule - not wanting to let the other person down - rather than taking care of your own medical needs.

Pets can help us overcome isolation. Look for a group of owners who share your interests. You can usually do this through www.meetup.com or through your local ASPCA or Humane Society chapter.

There's nothing I recommend more for someone who is socially isolated than becoming involved in a friendly church. For people with facial pain, this can be difficult - downright impossible. When I lived in Gainesville and was attending a new church, people would come to shake hands with me, smile, and chat. Sometimes It caused me a lot of pain to smile or to talk. I wanted to embrace the friendliness, but I couldn't. One nice woman asked me to go to lunch, but I didn't want to try to eat in public. Having lunch with someone involved two painful things: chewing and talking. If you are interested in going to church, you may want to see if the church has a visitation pastor or volunteer. You can meet one-on-one with this person to explain your situation, and they can facilitate your needs. At a small church, you may not find someone with this role, and this means you will need to contact the pastor.

Whether it is volunteering, going to church, or finding a support group, write out your special needs - how to avoid your triggers. Make copies. Take them with you so that you won't have to explain it time after time to the new people you meet. If your first effort doesn't feel right, you have the opportunity to try again or to move on to another choice.

Everyone needs support. These are just a few ways to overcome isolation. Tiny steps are usually the safest way to begin your journey back into the community. I am wishing you the most success. It may not be easy, but you are worth the investment.

Will you share your experience with us? Your success in overcoming social isolation? Your needs? You may comment anonymously.

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.