Category Archives: Uncategorized

Loss Means You Are Alive

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I must admit that I am not organized. Yes, shocking, but I do not have everything in its place. I plan to get everything in order someday, but it is only Tuesday. I lose things.

I have a gadget on my car keys so I can find them from my phone. The challenge is that I’m deaf in one ear, which disables the ability to determine where sound comes from. I estimate that it takes triple the amount of time that a fully hearing person would take to find keys. I can tell you with full confidence that when I find my keys, I make all kinds of promises about the future. I will no longer leave car keys in a random pocket. However, I do not follow through. I guess it is a loss that isn’t meaningful enough to change me.

What I’ll call real loss is not fun. Loss is unpredictable. We never have time for loss which is undeniably a part of life. Loss can be great or small. Losing my keys is probably one of the smallest of losses. I typically don’t hug them when reunited. Other losses are significant and make my heart hurt physically.

Loss of a loved one is probably at the top of my personal list of life’s losses. The loss of someone who will no longer be in your life, no matter how that loss happens, feels wrong. My mother died after a battle with Alzheimer’s. It was simply wrong that a delightful woman who frequently thought of others more than herself had to go out in a manic, out of her mind manner. I learned a lot about the cycles of grief both before and after her passing. Grieving the loss of a dementia patient starts before death.

I lost a friend to a very sudden death. We shared many experiences over a few short years. I wish I’d known then how short our friendship would be. She really knew me and had a way of accepting who I am. We had a LOT of fun. Her sudden, too early, death showed me another angle to the stages of grief. Following a sudden unexpected death, grief takes on a more acute, rapid cycle.

The loss of people robs us of stories that can no longer be shared with direct memory of an experience. Each person I have lost has known me in different ways. Those parts of me now fluctuate between being closed off or occasionally taken out gently to be treasured. I have lost too many people.

I don’t think I can adequately capture the loss I’ve felt with lost friendships. It’s a different, sometimes sharper pain than losses through death. So many friends have moved to different places in their lives, both literally and figuratively. The loss is gradual until we don’t really feel the connection or freedom to reach out just to share simple things in daily life.

Shall I talk about the loss of a pet? Loss of pets shows us the disparity of life spans. It’s not fair that dogs and cats live so much shorter lives than we do. The loss of a cold wet nose in my hand, or a content purr on my lap are forever. I do bridge those losses with the acquisition of a new pet, but still hold closely those who have passed after sharing chapters of my life. Owning the decision to let a pet go allows us to gain the beauty of life as it slips away. Being with a dying pet is both beautiful and painful. Through loss and letting go an understanding is gained regarding life and the end of life.

Loss also includes inevitable clichés of life. Youth is lost while wisdom is gained. Health is lost unexpectedly as we don’t plan for it. When projecting our lives from a youthful perspective we don’t build loss into it. We “know” that hardships will come, but we are never prepared.

The loss of invincibility came to me when I got a brain tumor diagnosis. After much research, I knew everything would be back to normal after a quick check in to Mayo Clinic for brain surgery. I could not comprehend the loss of my life. While I did not lose my life itself, I lost my lifestyle. As I slowly adjusted to my “new normal”, I experienced life in a different way. I lost my career and many friendships. I lost a shared path in life as I had to forge a new  and unique one. I lost my smile, my hearing in one ear, and the privilege of living pain free.

I gained the skill of taking things slower. I gained the appreciation of a couple of good hours, and then days. I gained the appreciation of my family and how they were always there for me. And by that I mean always – while puking, unable to move due to pain, or searching for answers in the following years.

Loss of pain free living allows us to know that while hurting we are still alive. When my head doubles in density with pain, I have learned to focus on being still and breathing. Not trying to get anything done. Not counting the losses of the day. Knowing that another day will come. I have gained the knowledge that productivity isn’t always getting stuff done.

For me, loss of hearing has been strange. Some settings seem the same and I think it’ll be ok. Layer on a noisy background and it gets more difficult. Then if adding a conversation in public, I don’t hear what the person in front of me is saying but hear the entire conversation between others to my left. It is confusing and hard to clarify for anyone you are trying to talk to. The loss has made me appreciative of my good ear and the sound of ocean waves that drown out constant tinnitus. Life has now introduced the challenge of understanding people who talk to me with masks.

Covid-19 is global loss leaving many questions that have no answer in this world. Answers that will evade us until we slip into the next dimension. Answers that we reach for and theorize on. Answers that we ask in a loop that repeats indefinitely. Given the wisdom gain from many previous losses in life, I am taking it a day at a time. At some point we’ll look back and realize that we made it and that we’re ok.

Loss changes things. Loss has allowed me to gain perspective on myself and life. Loss gives us the knowledge that we are alive and can feel. We are here to feel pain, to carry on, and to figure things out. While I make promises to my lost keys that I never keep, I strive to appreciate all I have and to accept ongoing losses yet to come.

Acceptance

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I am not happy about the brain surgery I had. I tolerated it. I’ve dealt with lingering post-issues. However, have I accepted any of it?  I was recently told that the path to dealing with life events, failure, and disappointment is acceptance. What does that mean?  I recently dug into the dictionary of Google and found myself stuck between tolerance and acceptance. I learned a new perspective.

I drilled down through layers of web pages and definitions. I dug from high-level headlines to a detailed analysis of terms and descriptive words. Acceptance comes from the word accept which means that you consent to receive, believe or recognize. Yea, okay. Consent is not implying that I welcome, without trying to rewrite. I’ve often recited the obvious — you can’t have highs without lows, but I haven’t been past tolerance with the lows. I pondered as I looked out the window at trees and life.

We all quickly accept things that go our way in life. We accept without questioning desirable life events such as passing a test, enjoying a day with family, or finding a new pleasure in the form of food, book, or activity. We don’t obsess about decisions that we made that went well regarding career choice, friends made, or journeys traveled. However, when things are bad, which they factually are at times, we ask why?  We do not want to recognize or accept that life can be really rough.

I pondered that something can be tolerated but not accepted. However, one cannot accept without tolerance. After thinking really hard, and digging further, I started to understand the difference. Acceptance is moving our hearts and minds toward being okay with something.

Tinnitus is ringing in the ear. If you don’t have tinnitus, it probably sounds pretty benign. However, if you have it you know what crazy is. It doesn’t go away. It gets worse in some settings, but it’s always there. My tinnitus roars at times after being in a noisy setting. It changes with the movement of my eyes. However, if I don’t think about it, I tune it out. I forget about it for a while, even though it is still making the same sound to my brain. I know that there is nothing I can do about it, so I have accepted it.

Single-sided deafness is odd. It can range from unnoticeable in a quiet setting to frustrating when a grandson whispers something in my deaf ear. Shortly after becoming deaf in one ear, I was still adjusting. I was at a hotel and picked up the phone to call the front desk. I was holding the phone to my deaf ear. All I heard was silence. I hung up, looked at the phone, and tried again. Nothing. After three tries, I recognized I had been holding the phone to the wrong ear.

I switched ears and called a confused front desk person. At that moment, I could have been frustrated and depressed. However, for some reason, I chose acceptance. I laughed and apologized to the confused lady on the phone, explaining I had recently lost my hearing. I believe this was an example of acceptance – not just tolerance. It is a fact that I am totally deaf on one side. All frustrations aside, it is a funny story.

I haven’t been as gracious to myself about other things I should accept. I still question why I have not been able to will my body to heal faster or more fully. I am still limited in cognitive and physical stamina. I continually tolerate those limitations but haven’t fully accepted them. I get stuck between giving up and moving forward between tolerating with frustration and accepting by making new plans. I want to blame myself when I should accept that this is the journey I am on. I am not going to wake up one day to a different reality.

I’ve tried in spurts. I confidently find a new direction in life in my continual attempt at adding value to the world. However, when things don’t go as envisioned, I find myself pouting about how hard life is. I find myself bemoaning the old days. I don’t accept that I won’t get an honor badge for tolerating brain surgery. I won’t get a free pass for future endeavors. In fact, I’ll frequently pay a higher price to play in life. I don’t like that. But can I accept rather than tolerate? Am I missing new opportunities that may be very rewarding because I’m too busy looking back?

I’ve lived in many houses throughout my life in several different towns. I accept that I lived in one house as a child and a different one now – with many more in between. Sometimes the movement from house to house was my choice, and other times not. However, the moves happened, and my daily view was different. While I miss the view from previous houses, I love the view I have now of trees and space. Even when the trees are bare and brown in the winter, I know they’ll be green again in spring.

I can rearrange my current living room. However, it’s futile to try to fit things into a room in my house exactly as they fit into a previous house. I need to focus on the house I am currently living in. Maybe now I will try to view my mind and body similarly.

I constantly chaff at the changes in my life post-craniotomy. However, maybe if I focus more on what has happened rather than on what could have been I would feel more at peace with where I am in life. If – scratch that — WHEN we encounter a valley in life, the only way to get back on top of the mountain is to climb it. The pursuit of a full life is through trial and error, accepting that success isn’t guaranteed. Bumps and switchbacks are part of the journey. Can we embrace acceptance?

Acoustic Neuroma – Depression and Timelines

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Depression and Acoustic Neuromas are definitely linked – in my non-professional, experiential opinion. The same sentiment has been expressed by many others throughout the acoustic neuroma world. I don’t know if it’s because our brains have been invaded or because our lives are too often turned upside down. Regardless of the reason, I can state that depression for our world, and the world of anyone recovering from a major medical crisis, is real.

When I was in the hospital, my family and I learned that “hospital time” is often very different from “clock time.”  Frequently, the time given for appointments, procedures, and hospital releases are truly more of an estimate or recommendation than an actual time that is met.

In defense of the medical profession, there are valid reasons for delays. Critical cases pop up. Our bodies heal slower than we (and the professionals) predicted. And when a doctor spends some extra time answering my questions, I always appreciate it and think about that when delayed – perhaps someone really needed an answer and I’m happy to think my doctor took the time to answer rather than abruptly leave the room in order to be punctual.

Therefore, it shouldn’t be a surprise to us that we each have our own “acoustic neuroma recovery” timeline. Each tumor grows at a different rate – though all within a somewhat common range. Each tumor causes different symptoms – all within a family of symptoms. And each recovery from treatment takes a unique path – somewhat within the guidelines (not strict rules) of the acoustic neuroma rules of nature.

Depression is one of those paths that each person takes – ranging from mildly set-back to debilitating and clinical. We are depressed that we got a brain tumor – but grateful to be alive. We are depressed to lose our old selves and each take our own time to return to ourselves – or more commonly come to terms and acceptance of a new self. One with different limitations wrapped into an old self who remembers.

Depression is not just a feeling, but a chemical imbalance in the brain that we need to really work at to change. Again, each person has their own path – some use therapy or pharmaceuticals. Others use natural holistic approaches. It is not often that we can just think our way out of depression. It’s like getting out of a well pit without a ladder – kind of hard to impossible on our own. One misconception about depression is that we want to stay there. We really don’t.

What is helpful from those around us is acceptance and grounding. Acceptance that we are going through a rough process that nobody can shortcut for us. Acceptance that we are still the same inside but fighting a new dragon. Grounding that we aren’t being judged for having our own path. Grounding that those who surround us are walking beside us.

It took time for the brain tumor to grow. It took time for our bodies to heal and adapt. It will definitely take time for our emotions and brain chemistry to adjust. Most importantly, it sometimes takes a long time to adjust our sense of value to the world and to redefine our individual comfort zones.

Acoustic Neuromas – Sleep is no longer a luxury

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max sleeping

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. . .

Facial Paralysis and Pictures

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Pictures capture the memories of life – both significant and small. For Acoustic Neuroma survivors, it also causes serious stress and angst. We WANT to be in pictures, people in our lives encourage us, we cooperate, and are then frequently horrified by the results.

First, the facts.

Smiling intentionally and smiling spontaneously are two different things. How often do you walk around with a smile like in pictures? Our cheeks would ache and we would appear insincere. We move our mouths normally all day with minimal movement, and then say “CHEESE” with huge movement when a camera appears. So if you think about it, you’ll start to notice the distinct change in others’ faces at that moment that the camera appears.

The mechanics of smiling

Our Eyes – We smile with our eyes as much, or even more than our mouths. Technically, the twinkle in the eyes of someone who is genuinely happy is caused by tear layer being compressed with slightly squinted eyes, which causes more reflection in the thicker layer of fluid.

Our Cheeks – We smile with our cheeks. A spontaneous smile originates when our cheeks lift our lips.

What?  – There’s two ways to smile if you really think about it. Try it in front of a mirror. If we force a smile, it is using the muscles around our mouth. Those muscles are frequently suffering from a combination of paralysis and synkinesis following brain surgery. However, If we try to ignore our mouths and think happy thoughts and let our eyes smile, our cheeks pull up our lips. Subtle, but worth thinking about.

When the pictures come – We are accustomed to seeing ourselves in a mirror. Pictures show us as others see us, which is different. We might think we look okay in a mirror only to be horrified when we see a picture. The more symmetrical one’s face is, the more familiar their face will be in pictures. Since paralysis and synkinesis causes asymmetry, we then look very different to ourselves in a picture. So, when the pictures come, or someone hands you their camera phone, hold it up to a mirror and look at it in the mirror. You might be surprised. It doesn’t change the picture, but it lets you see yourself in the way that you are accustomed to.

Positioning – Huge life moments happen that we want to remember, but we cringe about having our picture taken.  That’s where positioning comes in. In a formal picture setting, quietly mention to the photographer that you have a legitimate issue with your face and could they keep that in mind when positioning. I did that at my daughter’s wedding and was very pleased with the outcome. I’m turned so that the good side of my smile shows, and the “bad” side is turned away from the camera.

kendra sally

Kendra’s wedding

If you are in a candid setting, don’t lose the moment! Turn your face a bit to the side, or hold something in front of your bad side. I have a picture with my grandson where he is holding a balloon. You can only see the top half of his face and one side of mine. It is very cute with us peeking around the balloon. I’ve held a wine glass up (cheers) to cover half my face or the corner of my mouth.  When my face was fully paralyzed on the right side, I turned totally sideways in front of the ocean. You see my profile with wind blowing my hair over the good side of my face. I love the picture. For me, it captures my pleasure at surviving, walking, and breathing ocean air. Call it art if you don’t consider it to be a portrait. . .

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Ocean Air and Wind

Smile small – I hate it when I pose for a picture and someone I don’t know says “smile bigger!” I just say, “This is all you’re going to get.” A small, pleasant smile can minimize the two sides and look quite nice.

Makeup – Here’s a bonus for the ladies: A couple of things that can be done to help symmetry is to part our hair so that it draws the eye to the “normal” side of our face. Contrary to what you would think, you want the part of your hair on the paralysis side. Also, if you put lower eyeliner above the lashes on your larger looking eye, and under the lashes on the smaller looking eye, they will look better. On your lips, put lipstick on, but then add a touch of shiny gloss on the skinnier side of your upper lip. That will cause a slight optical illusion.

SO. . .

Even with these tips, there are times when you need to forget facial issues and “just” smile, let a picture be taken, and embrace that we are unique. It’s okay.  There’s much more to us than our faces.  There are many ways to show love, pleasure, or acceptance beyond a facial expression.

 

Smiling and Facial paralysis

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Asymmetrical flower

Asymmetrical flower

One of the things that people with full or partial facial paralysis will tell you is how much they miss their smile.  I had the same reaction, and still do even though much of my face has movement again.  It just isn’t the same – and that’s by factoring in parts that didn’t regain movement and Synkinesis (explained below). By going to facial therapy every few months for the past four years, I have learned some interesting things that are helpful. First and foremost – A smile is not just a smile.

Our Eyes – We smile with our eyes as much, or even more than our mouths. Technically, the twinkle in the eyes of someone who is genuinely happy is caused by tear layer being compressed with slightly squinted eyes, which causes more reflection in the thicker layer of fluid.

Our Cheeks – We smile with our cheeks.  If you hold a paper in front of your mouth and smile at someone, they will know without seeing your lips if you are smiling or frowning.

Symmetry – Beauty according to the modeling world and scientists of natural selection perceive a symmetrical face to be ideal.  However if you start to study faces, few are symmetrical.  We love people in our lives regardless of their natural symmetry.  We love actors in movies sometimes because of asymmetry — Harrison Ford being one example. Brian Williams is a news anchor with asymmetry. I, personally, watch NBC nightly news because of his wit mixed in with the drama of the day, not because of his symmetry or asymmetry.

So we’re asymmetrical.  Okay. Acoustic Neuroma survivors even more so than we were prior to brain surgery.  Some parts don’t move and some move wrong.  That’s because of a couple things that I will explain in such simple English that doctors and therapists will groan (and be reminded that I’m not a doctor):

Nerve Healing – Nerves heal at the rate of about an inch a month.  BUT WAIT, there’s more! What I didn’t get is that the nerve doesn’t just heal at the little section that was damaged, but from that point out to the end.  Take me for example – my facial nerve was damaged at the time of surgery.  Obviously that damage was inside my skull.  The healing required for my mouth to start smiling again was about 6-7 inches.  So, the corner of my mouth turned up at seven months, which was about right. Some nerve fibers way out at the end of several branches will just never get movement back.  Because of the distance, the forehead almost never comes back, I have been told.  (Some facial nerves are severed and never come back, for which there are surgeries available)

Synkinesis – I was told by one doctor that once the nerve heals, it heals.  My face would just start moving again.  What he didn’t mention was Synkinesis.  When the nerve is damaged, that means that some fibers within the nerve were broken.  If you can image a rope being frayed, and then (use your imagination) it becoming whole again, it is easy to see that not all fibers would heal to their previous partner.  That is Synkinesis.  The improper movement of the face due to improper healing.  For instance, when I try to raise my right eyebrow, it just sits there.  However, when I do certain other movements with my face, it lifts like a little soldier.  Gee, where were you when I asked you to raise?  When I drink through a straw or pucker, my eye closes or squints.  Synkinesis is determined by the amount of damage compounded with the length of time a nerve is paralyzed.

Neuromuscular facial retraining – Once the face starts moving again, it becomes locked up because our brains were trying so hard for so long to move those muscles that as soon as they healed, they froze.  So we often think that movement hasn’t returned when it has.  Facial massage, focusing on painful knots that we feel, will loosen those muscles and make us more comfortable.  Retraining, which I haven’t mastered, is possible by making tiny movements and stopping when it stops matching the movement on the normal side.  With time, our brains can remember how to better move. (this should be done with a trained therapist)

There is no magic bullet, and no point when many of our faces will ever be normal again.  However, if we understand the mechanics, we’ll understand what our bodies are doing.  Knowledge is power.

My next post will be about Pictures and Facial Paralysis. . .