Sometimes we need to use words


I will be the first person to raise my hand and plead guilty, so please don’t picture me with my nose in the air touting greatness. Instead, picture me clicking “Like” to a social media post instead of taking the time to say a few words. (That is, ‘like’ or ‘+1” or ‘*’.depending on the social media site)

Social media is a powerful tool in our world today. Because of it, we are connected to more people than ever. We connect with old friends, delighted to catch up after sometimes many years. It’s a wonderful way to share family news across the miles. Other times we connect with people who are also experiencing a life event. Topics vary tremendously, including beliefs, travel, parenthood, hobbies, or shared life stages. Other events are traumatic to ourselves and close ones like illness, tragedy, or financial needs. We can now communicate in a truly global way with many despite the fact that we are sitting in a chair, possibly alone in our homes.

Myself — I have connections with friends, family, casual acquaintances. We all have things to share and laugh about. A steady stream of videos fills my feed of crazy and cute. Thought provoking posts help me see things from varying perspectives. I’ve made friends in faraway places and feel like we live next door.

However, what I do find interesting, and a bit disappointing (see finger pointing at myself also), is when people pour their hearts out in a post that we often read, click acknowledgement of, and move to the next post. Especially in closed groups, individuals are reaching out to others who are experiencing things that nobody in their direct daily life can understand. We, fellow members of those groups, are sometimes the only ones who can grasp the severity of what that individual is living – today. Often, we don’t take the opportunity to share our words to let them know they aren’t alone in this world. We don’t take the time to carefully craft a response that really shows that we understand, have answers, or can provide encouragement.

Now, not to be too hard on myself and the rest of us – it does take all of us (no, I’m not going to say a village.)  There are days when I don’t login to any of my social media accounts. I disappear for weeks at a time and am not one to post that I just made toast (although I did once post that I made hot chocolate – lol). Sometimes I browse my news feeds just as a nurse calls me into an appointment, not allowing for a wordy response. I cannot, nor can anyone, take the responsibility of always commenting, but we can do our part.

In the acoustic neuroma world, there are new diagnoses every day. I recognize, and clearly remember, the specific shocked state that one goes into when hearing a brain tumor diagnosis. We want to know that we are the exception to the assumption that a brain tumor changes you for life, or ends our long thought out life plans. We learn that it does change everyone, at least emotionally, while retaining goodness and joy regardless of our physical outcome. There is laughter and camaraderie despite being changed physically – some more than others. We do not have all the answers, but we can be there for each other. We can encourage. We can speak and share.

So, in the season of beginnings, let’s think about actually taking the time to let others know that we have heard them. I thank those who have encouraged and commented as I’ve written this blog. It is that encouragement that keeps me writing. Thank you.

The Store is Open – Need Gift Ideas for Christmas?

Picture from Recent Trade Show

Picture from Recent Trade Show

My Online shop is now stocked with:

Original encaustic art

Canvas and poster Prints of encaustic art

Calendars – both art and photography

Book Art – by Kayla Rudy (my daughter)  very cool

Books – Smiling Again as well as two other anthologies that I have chapters in.

Please stop by!   Online shop

Brains That Share Space With Brain Tumors

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So many reasons to live, so we do. So many reasons to give up, but we don’t. Sharing space in your head with a brain tumor – even if it’s been removed – changes who we are.

Getting the diagnosis that there is an alien inside what we perceived as an solid body part that’s already filled to capacity begins the change. Living through treatment that penetrates that impenetrable cranium tests our will to live in ways that we never imagined. Living through treatment is what is implied – living and not dying.

Recovering from treatment tests our longevity and patience. There are no quick answers. Healing may be stunted by limitations of our bodies to regenerate parts that were not meant to regenerate. Parts that were slowly damaged, unknown to us, by that selfish alien. A tumor that doesn’t care what it pushes around or damages to find space as it grows – until it demands to be recognized.

Fatigue can be overwhelming. Our minds are foggy until the sleep that our brains demand is paid in ransom – regardless of how we wanted to spend a day. Fatigue helps us prioritize and give effort to only what is important.

Depression can come – and go – in an instant. As suddenly as a balloon flying high and free and then popped, deflated and fallen to earth. The culprit could be a new diagnosis, a new drug that doesn’t work, or a hope that is dashed. When depression lets up, even for a short time, joy is more joyful and fun is more fun.

Balance is a challenge. While the opposite side typically takes over, it requires more time to catch our bodies when tilted or turned. Balance teaches us to know our body and be deliberate in our movements.

Pain may be constant, unrelenting. Not a welcome giggly friend, but a constant companion. The lack of pain can provide a gleeful relief that is recognized and savored.

Single-sided deafness is puzzling. How can noisy settings be louder when only one ear works? Single sided deafness – good ear down – shuts out the world for a period of time leaving only the frustrating yet fascinating sounds of tinnitus.

Facial paralysis is something we learn is a journey, not a point in time when it ends. As we learn to accept our inability to express ourselves, our faces either stay flaccid or morph and feel pain. Facial paralysis is something that teaches us the value of relationships and the value of what’s inside.

With the miracles of today’s medical science, it slowly dawns on us that while we look for a fix, the medical world can only search for a band aid to cover ongoing, long-term issues. With the miracles of today’s medical science, we recognize we are alive and survived.

We are like leaves. Some of us are strong and survive growing, blowing, and falling from trees. Some even stay pristine as fall leaves being walked on. We absorb whatever life throws at us. Others are brittle and crumble despite all attempts to hang on. We don’t know what type of leaf we are until we fall or get blown down.

Life is life and we cherish it. Each day when we touch nature or another person emotionally, or with a big hug – it is another day we live, love, and breathe. Even as brains share space with the unknown, our hearts share living.

 

Acoustic Neuroma – Common misconceptions about facial paralysis

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I will start with a disclaimer. Some people recover fully from short term facial paralysis and return to a fully functioning face. However, there are many of “us” who continue to have issues. This is for us.

I thought I’d spend some time addressing common misconceptions about facial paralysis.

“Facial Paralysis Goes Away” – it doesn’t in many cases. There is some improvement at times, but not always. There are degrees of improvement and each person is different.

“Healing is a one-time thing” – Faces that have some recovery commonly continue to change for years.

“Facial Therapy is like lifting weights” – No. It isn’t. Facial therapy focuses on tiny movements. You can “bully” your biceps into being bigger by lifting weights, but there is no such thing with the face. Trying to smile when your face is paralyzed is not going to help. (Although it won’t stop us from trying when we look in the mirror)  What is good is to focus on how the normal side feels and try to emulate that feeling and movement. (focus on what is working rather than what is not)

“It just comes back” – well, that is true for some people, and that is wonderful. However, for many it either doesn’t return to normal or returns partially with abnormalities (see next point)

“When it comes back, it will be back to the good old days” – No. While the brain is doing everything possible to get the face to move, commonly the fibers heal wrong. That causes Synkinesis, which is the result of mis-wiring. Picture a cable with many wires in it. If you cut it and then put it back together, think about how difficult it would be to line up each wire perfectly and match it with its prior other half. The odds are not good.

“Botox paralyses muscles, why would you do that to what little has healed?” – Botox can be very helpful to those with Synkinesis. Full paralysis of the face is more relaxed because there is no communication between the brain and the facial muscles. However, as the face begins to heal – the result of regeneration of the nerve from the point of injury to the ends – the brain is confused by Synkinesis. Spasms, tightness, and improper movements can be quite uncomfortable. (Heat also helps)

“Botox is a crutch” – for me, Botox was a reward of relief after months and months – years – of working through everything possible to figure out what was working, what was tightened in spasm, and what truly wasn’t working.

“Botox will retrain the brain” – Botox can do one of three things to your brain (or a combination).

1 – Allow the brain to take a break and forget improper movements. Ideally, it forgets and when the Botox wears off, the face is functioning more normally. (that is a lucky person).

2 – The brain is given a break, and over time will forget some improper movements because they haven’t been happening while deadened. (it does happen).

3 – I believe most commonly, (my opinion and experience) Botox will become a normal part of life. The location of each shot (many at a time) will change over time, but will continue to make significant improvement and relief.

“Anyone can do your Botox” – Botox should be done by a professional who is well trained in facial paralysis issues. It is not a beauty treatment. The goal is not to immobilize the good side of the face to match the placid side. It is to help the damaged side gain a balance between using what has healed correctly and minimizing what has healed incorrectly.

“At least you have no pain” – facial paralysis frequently included tightness, spasms, facial pain, and increased head pain.

“We don’t want pictures!”  We do want to participate in capturing life’s precious moments. However, we want advance warning so we can position our face to avoid very odd snapshots that do happen.

I’ve gotten used to my crooked smile. No, I don’t like it, but it has helped me prioritize what is important in life. Because our faces typically move minimally in normal life, it isn’t always as noticeable as we see in our minds. The exception to that is the exaggerated huge smile that everyone has in pictures that we can no longer do. And that’s ok. Life is imperfect, right?  Everyone has something. Facial paralysis just happens to be one of the more emotionally and socially difficult.

Go crooked smiles. . . and remember. . . When we smile internally, the beam is noticeable on the outside – Twinkling eyes, happy body language, half a smile that draws the eye. Facial paralysis is sometimes about what is working instead of what’s not.

Synkinesis is the result from miswiring of nerves after trauma. This result is manifested through involuntary muscular movements accompanying voluntary movements. For example, voluntary smiling will induce an involuntary contraction of the eye muscles causing the eye to squint when the subject smiles. (https://en.wikipedia.org/wiki/Synkinesis)

Acoustic Neuromas – Sleep is no longer a luxury

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I remember being a kid on Christmas Eve, unable to sleep and waking early with excitement. Why did my parents want to sleep in?

I remember being a teenager and sleeping all day if I had nothing to do. Noon would come and go. One PM might come and go. It was shocking when I got a job and had to actually set an alarm.

I remember being a mother of young children and appreciating any sleep I could get. I remember wishing that they would sleep just a little longer on Christmas Day.

I remember getting up before the roosters to head to work.  Yawning as I drove in to work, I longed for just a little more sleep.

I remember traveling to different time zones and going from wide awake at night to falling asleep when most inconvenient.

I remember the luxury of laying in bed on vacation  when I didn’t have to get up.  I think stretching helps to appreciate the unusual lack of urgency. I also remember appreciating silence.

And then I learned that I had an acoustic neuroma brain tumor.  For a while following surgery, I was tired but couldn’t sleep because of the pain. I longed for sleep to escape pain. Then I learnedto go to sleep with loud buzzing in my head. I’m now used to waking up and thinking a radio is playing when the house is actually silent. What does silence sound like, I try to remember. . .

Now, the new me, even after years, demands sleep. I need to sleep well at night. I need naps. I need breaks from busy days. Sometimes my head demands that I lay still and rest. Sometimes my eye demands that it be closed for awhile.

Fatigue is very common in the AN world. Our brains are working overtime to compensate to the permanent/long term injury resulting from the alien in our heads.

What is helpful is for family and friends to understand that and support sleep. Knowing that we aren’t being lazy, but we just need more rest than we used to. Encourage that nap for your loved one. Offer to sit for a few minutes while out shopping. Don’t be offended if your loved one closes their eyes when talking to you – and possibly drifts off. Understand if a quiet setting is preferred – noisy ones drain us – and frustrate us (and those who are trying to talk to us.)

And ANers out there – Don’t feel guilty about getting the rest that you need. Take naps.

Gotta go. It’s naptime. . .

The Unpredictability of the Acoustic Neuroma World

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Sunrise or sunset?  Does it matter?

So. . . I took a bit of a break from blogging. That was the point. Sometimes we need to step away from experiences in order to grow from them. Being a part of the AN World is a challenge and a blessing. I don’t say challenge in a whiny voice, but a determined one. We need each other for information sharing, encouragement, and understanding.

The AN world is (Me is a general term here, not me specifically)

  • Unpredictable – each outcome is unique.
  • Unrelenting – it doesn’t go away by itself, and treatment can leave one with “issues”; watch and wait involved many hours of not knowing the future.
  • Puzzling – Why me? Why didn’t my treatment go smoothly?  Why did others go smoothly?  Am I a wimp or was I missing something about it being the best kind of brain tumor.
  • Supportive –With today’s technology we are able to connect globally, which is amazing. It can also be frustrating when we read comments from people we don’t understand or don’t understand us. Sometimes we don’t need a solution for something that has no answer, but just an understanding. “Yep, me too. . .in my corner of the world get what you are saying from your corner.”
  • Confusing – I’m alive, but I still feel so conflicted. I’m grateful but exhausted, depressed, and trying to figure out who the “new me” is.
  • Exhausting – Fatigue just is in the AN world — for many. Fatigue that is not merely being tired. The brain is working overtime to compensate for damage that was done to eradicate the alien.
  • Ground hog day – For those with less than ideal outcomes, it can become redundant to deal with issues, some of which may have only so much room for improvement. For watch and wait, it’s waking up every day knowing that there’s an unpredictable alien in our head.

This AN world contains a set population of people with varied outcomes following treatment, blended with new people looking for an encouraging and positive prediction about their newly diagnosed life change. They are scared. We need to encourage and be realistic while not being “Debbie downer.” It’s a dance that sometimes causes friction. Both within each life and relationships and within each support group.

Do I tell a new person that it is no big deal?  As we’ve all been told “It’s the best kind of brain tumor you can get.” “Who needs two functioning ears when one will work?”

Do I scare the heck out of the newly diagnosed when it is a possibility that they will skate through and say “That was no big deal. I have no residual effects!”

When they wake up from surgery, or complete a treatment will they understand what they are experiencing?

We all dance around, “For me, it was xyz, but we can’t predict. . . “

I felt blindsided by my experience. I had received very encouraging predictions about how it would go. I closed my mind to other options. I was told that it would be terrible for a few days, but then all predictions were of a full recovery. I struggled as I scrambled to put my old self back together. It was only when I found peace with the fact that the old me had passed, just as youth does, that I was able to embrace my new life. I was able to see blessings through struggle, and learned perseverance of managing chronic pain. I found new interests, and refused to pull the covers over my head and die. I do allow myself to pull the covers over my head and let my body rest without guilt that a day was not productive. Eventually, I always get up and take that first step.

Would I do it any differently?  Probably not. However, it is important to support people wherever they are and accept their experiences and individual journeys. It is important to recognize the extremely broad and unpredictable range of outcomes.

No rhyme or reason, young or old, male or female, large or small tumor, or treatment type. Each journey is individual. Each smile is unique. What we each hear is unique. But we are all in this together.  Camaraderie and understanding is priceless.

ANAwareness – Acoustic Neuroma – Laughter

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Here is one of my last two contributions to ANAwareness week.

I wrote about laughter. . . how I choose to laugh instead of cry. . . (admittedly not ALL the time)

https://www.anausa.org/patient-ambassador

For quite some time following surgery, I took everything seriously. I still had a sense of humor, but was overwhelmed by the new me and deeply encased by a cocoon of self-pity. However, over time, my embarrassment with facial paralysis and awkwardness of single sided deafness gave way to acceptance. I saw, through my friends’ eyes, that I had a choice to laugh instead of cry.

I learned to walk carefully as I recalibrated my confused vestibular system. Despite my caution, sometimes I randomly veered to the left. One day at the grocery store, Kayla and I had two bags and a jug of milk. So when we headed out to the car, Kayla grabbed the bags and made a suggestion. If I carried the milk jug with my right hand, it might balance me and I wouldn’t veer left randomly as much. Well, it worked. We laughed at the uniqueness of the “balance tool.” We agreed the lesson for the day was “Sometimes you need to get a new tool or find a new use for an old one.”

Four months following surgery, I visited a friend for a few days. Nancy met me at the airport and took me home to a well-equipped guest room, complete with a heating pad for my head and face. Ever the observant friend, she quickly learned my new pain patterns and triggers. Whenever I got up, I would take one or two steps and have to stop for an overwhelming brain freeze to subside. She and her husband learned to stop and wait for me, continuing our conversation without a break.

Once, I bent down to plug in my ever-present heating pad and fell over, my balance still very compromised. Her husband simply stood up, walked over, offered me a hand, and after seeing me vertical again, returned to his chair and television program as if nothing of dramatic importance had occurred. They learned to walk between me and the street in case I veered left unexpectedly, and they didn’t want me to get run over. We learned to laugh about it and they just knew what would happen and anticipated it – always with a smile or a chuckle.

At about six months after the surgery, I went on vacation with another Nancy friend and her family. They had an extra seat and bed for spring break and I had nothing better to do. My days were filled with getting up, being in pain, and going to bed. I decided that it couldn’t be much worse while sitting by the ocean. We walked on the beach, and with limited stamina I would have to turn back much sooner than they typically would.  I offered to head back alone so they could continue their walk.

Nancy said firmly, “No.  We are going back with you.  I am not going to be the one to call your family and tell them that you veered into the ocean on my watch!” And we would turn around and head back – with someone between me and the ocean.

Of course, cameras are a big part of vacations and we wanted pictures. I really didn’t want my dour looking face to be captured though. So Nancy suggested that if we BOTH held the corners of our mouths in a smiling pose that nobody would be able to tell what was paralyzed. I still smile when I see the picture of the two of us holding smiles in place. We laughed so hard we had trouble holding our faces.

The favorite story that she loves to retell from that trip is the French fry story. For some reason, I don’t like asking people to repeat themselves when I don’t hear what they say. So I make an assumption about what I think they said and answer that question. It has caused some puzzled looks, apologies, and chuckles. On this particular adventure, we approached the pool bar with loud music blasting. I ordered a cheeseburger for lunch. The waitress was entering it on the computer and asked me a question that I heard none of. Making an assumption, I said, “I’ll put it on my charge card.”

Nancy started to laugh.  I mean really laugh, “She asked you if you wanted fries with that!”

“Oh, oops.”  I started to feel embarrassed, but with her laughter, I couldn’t help but see the humor. The feeling that I had inside transformed from embarrassment to acceptance and humor. That was the instant that my attitude began to change.

Going out to lunch or dinner with friends can be challenging. I always position myself in the chair that allows me to best hear the conversation. My friends joke about how they can tell who I’m most interested in listening to by where I sit at the table and who is on my right side.

We tend to lean to the left when we greet or part with a hug. My friends will often give me a hug and whisper something like “good to see you”, or “keep in touch.” This is frustrating to me, because being deaf in the right ear means I always miss those endearing little comments. I’ve learned to let them know that they are definitely the more “challenged” ones by hugging back and whispering into their ear, “If you want me to know what you are saying to me, that’s the wrong ear to whisper in.”  We then laugh and they correct themselves.

When together, my daughters have learned to walk on my left side. They frequently tell me after spending time with me, they’ll unconsciously do the same with their friends who aren’t deaf in one ear. “Oh yea,” they’ll realize, “I don’t have to walk your left side!”  Which always brings puzzled looks from their friends.

I was in a hotel one day and called the front desk but the line was dead. I hung up twice before I realized I was holding the phone to my right ear. I called again and apologized for hanging up on the poor lady twice. I laughed, and said, “Did I just hang up on you twice?”

“Yes,” she answered tentatively.

“Sorry, I am still getting used to being deaf in one ear. I wondered why the line was dead.”  I laughed, and she did too.

We have a choice many times to laugh or cry. While I do both, when I have a moment to choose, I choose laughter.