Tag Archives: humor

The Holidays – Two Sides of a Coin

half and half

Yep, here I am I am on the holiday bandwagon saying THANKS. As an acoustic neuroma recipient, there are also things that I admittedly am NOT thankful for and willingly admit it. So, in the spirit of making lemonade out of lemons (forgive ALL my intentional clichés), let me see how many things I can turn around.

  • I am NOT thankful for getting a brain tumor, but I AM grateful for many lessons I’ve learned since my diagnosis.
  • I am not thankful for daily headaches, but they have helped me learn to live fully on days that are less painful. I have learned to observe more and appreciate non-participation at times from my quiet corner of a noisy room when my head is screaming.
  • I am not thankful for facial paralysis and synkinesis, but it has helped me focus on people instead of their appearance. I understand what it is to feel different on the inside than what I can express on the outside. I’ve learned that body language is much, much broader than a smile.
  • I am not thankful for losing the hearing in one ear. I am thankful for the hearing that I do have. I have learned to let go of control in some situations (yes, I have been known to be a control freak). I now enjoy seeing others lead and find it relaxing to let others communicate. I’ve learned to trust the people in my life to let me know when I didn’t hear something important, casually and without making it awkward by gently repeating what was said.
  • I am not thankful for having a dent in my head. I have, over time, learned to chill more and relax tense muscles. Inhaling and exhaling are underrated. I pull my shoulders down and back, releasing tension that builds on itself in my body. I’m amazed at the difference I feel almost instantly upon a posture change.
  • I am not thankful for tinnitus. It isn’t fun to have nonstop buzzing in my head that varies with eye movement. It is not fun to have roaring in my head after braving a concert, movie, or noisy restaurant. I have learned to be thankful for things that peacefully block the noise somewhat. Natural sounds of waves bring peace and solitude. Birds and rustling in the woods is pleasantly distracting. I find it interesting that the best sounds for blocking tinnitus are sounds in nature.
  • I am not thankful for the independence that I lost. I appreciate regaining what I have and value freedom. Conversely, I’ve learned that dependence is sometimes a gift for both parties. I’ve learned to better appreciate relationships and people in my life.
  • I am not thankful for the emotional upheaval and depression that I’ve had to fight through. While deep in despair, I remembered what happiness felt like and fought to find and embrace joy again. I treasure smiles, giggles, and laughing.
  • I found nothing about a brain tumor to be funny despite nonstop jokes that I made when diagnosed. However, I’ve learned to laugh at myself and not take things so seriously. Really, not hearing someone is no reason for humiliation or embarrassment. I’ve learned to not pretend to hear what I didn’t and simply ask for a repeat of the question.
  • I was not at all thankful to end my career early despite years of wishing (like most people) for early retirement. Brain surgery is not a good way to get out early. I did learn though that I have a passion for writing and it is something that I can do when able, and think about when disabled by pain or fatigue. I can connect with people in ways that bring community and mutual benefit. Even though I don’t do what I used to, I have been able to find a new place in life.

I could go on and on, but won’t. Overall, I’m recognizing that life truly is a gift with no guarantees. While issues following brain surgery are real, I’m alive to experience more joy and human connection than sorrow, discomfort, and isolation.

Facial Paralysis: The Day I got My Sniff Back

Diagram of Facial Muscles

The first time I visited my facial therapist, Jackie, I learned a lot about facial muscles. Some pull up, and some pull down. Some are rather large, while others are narrow yet long, or short and wide. It had been almost a year since my surgery and the side of my face was just starting to move a bit. Jackie gave me the above diagram and explained to me that while my face was initially paralyzed on the right side, it was now a combination of paralyzed and frozen. While some movement had returned, it immediately had been frozen by muscles that quickly went into spasm. (She also explained Synkinesis, or the mis-wiring of the healing nerve, but I’ll address that another time) What?

Simply put, the brain had been trying to use those paralyzed muscles for so long that it tried too hard. So, when movement returned, the brain kept up with an intensity that was more than needed – causing Charlie Horses in my facial muscles. “But it doesn’t hurt. . .” I protested.

She explained that facial muscles experience Charlie Horse spasms just like your leg muscle in the middle of the night. Except, unlike leg muscles, facial muscles aren’t connected to bone at each end. “What?” She talked me through massaging, stretching, and squeezing various facial muscles until they did hurt. Releasing a facial spasm involves a combination of no pain but a lump, followed by intense sharp pain, and then a quick flash of more pain before it gives up and relaxes, now pain free and lump free. Allowing the muscle to now move as much as it can at this point – possible quite a bit and possible very little.

Acoustic Neuroma patients often have a characteristic look in the face. The lip comes up a bit with a flat motionless nostril. (Looking at the diagram you can see that several muscles come together in that lip/nose area.) In the summer of 2010, during a visit almost two years after my surgery, Jackie asked me to focus on the muscles in my nose. After having me push the very corners of my nose up like a pig snout, I laughed, but felt and saw a change. However, when she asked me to put my thumb in my nose and squeeze the side of my nose between my fingers, I looked at her. “Trust me,” she said.

“Well, ok.”  So, I put my thumb into my nostril and squeezed my first finger and thumb together. (Just fyi, there’s lots a sanitizer involved in facial therapy sessions.)

“Just hold it.” And I did for probably a minute or two. “Now let go.”

I looked in the mirror on her desk and sniffed. The side of my nostril moved for the first time since surgery. My eyes got big and I grinned. “Did you see that?  I got my sniff back.” And I sniffed again. And again.

And just one more time. “sniff”


Lessons Learned – I just wanted a soda


There’s a time when caramel colored, sweet, tangy, syrupy, carbonated beverages really hit the spot for me.

A couple days following my brain surgery, I desired a cola. I had been given jello and juice, but nothing tasted right. I wanted to taste something familiar. So, the nurse brought me a cup of ice and a can of Pepsi. I salivated as I watched the caramel liquid flow and bubble over ice. I savored the bubbles as they rose and fell in the white Styrofoam cup. I almost shook with excitement as I drew the drink and straw to my mouth.

By this point, I had learned how to drink again. I held the droopy side of my mouth closed and I drank through a straw held between my still functioning side’s lips.

I almost closed my eyes in delight at this little pleasure and return to normalcy that I anticipated with my first sip of Pepsi. I slowly drew liquid through the straw and onto my tongue as if it were a fine wine I was tasting.

Almost spitting but instead gulping awkwardly, I said, “NO! It tastes wrong,” I opened my eyes widely. “Something must be wrong with this can.” But then it hit me, just as each loss I had encountered since waking up. The nerve that managed my sense of taste had been bruised and made soda taste metallic, tasteless, and wrong. Everything had been bland and tasteless so far, but I hadn’t expected soda to taste worse!

So, I pushed the cup and can away and returned to water and ice. Ice that was as crushed as my heart.

Over time, my taste returned to normal, but there are still times when a metallic taste returns just long enough to remind me of that first Pepsi after surgery. I now savor flavors — and an occasional soda.

Caregiver Tip – Time is the Ultimate Gift


I love spending time with my friends and family.  Yesterday, I spent time with Kayla and smiled after leaving.  I talked to Kendra on the phone and felt warm and connected even though she’s across the ocean living in Europe.  Sometimes after being with the people in my life I don’t recall the conversation, but always remember the time spent.  It gives me strength.

One of my friends laughs most at a line in my book where I describe my brother as “giddy.”  He normally isn’t, but was after a short phone call to me in the hospital right after my brain surgery.  I could hear in his voice that he was relieved that his sister was going to be OK.  It was short phone call, but encouraging and meaningful.  I found strength in his uncharacteristic giddiness.

I recall my friends visiting me right after getting home.  They were each there for only a few minutes, but they were moments – not just time.  Margie helped me feel understood in my terror.  Nancy pushed me forward, “You’ll be fine” in a confident tone.  Time given as a gift to me was like fuel to my spirit, building strength to move forward.

As a caregiver, the ultimate gift is time.  Just sitting with someone is very important and helpful.  When someone is facing a medical crisis or recovery, you are most likely not going to have an answer or solution.  There is a time to do research to help educate and evaluate treatment options, but there is also a time when you just need to sit. Together.

God tells us to be still at times and loves to have us spend quiet time listening to Him. Speaking to Him. Being together.  Pulling strength from that relationship.

We only have so much time in our day, our weeks, and ultimately our lives.  Sharing it with others is the ultimate gift.

Brain Surgery – Recovery takes time


Yes, recovery from brain surgery is an uphill climb that’s exhausting, but it’s worth the trip. For those of us who have experienced having a brain tumor, life is precious. Each life event that we experience post-treatment is a gift. When I found out I had a brain tumor, it wasn’t my past that passed before my eyes but my future. Would I be here for my daughter’s wedding. Would I meet my grandchildren?

Our brains are vulnerable. Our brains map who we are. Having it invaded is very personal. Recovery is a steep climb for every one – a hike up a hill for some and a mountain climb for others. All we can do is take it a day at a time, experiencing progress in some areas and setbacks in others.

There are incredible support systems with people who are happy to share information. While our families step in to provide immeasurable support, we also benefit from one another. There are amazing communities of people in local support groups, on Facebook, and in forums that have a unique sense of humor and compassion. We have learned to laugh at life even as we are in pain. We can make jokes about the awkwardness of not hearing many things. We share tips for keeping a dry eye healthy or a compromised balance system functioning.

What I learned as I’ve healed is that, as in anything, the future “you” is still undefined. Recovery takes time and patience. We are in a society that expects instant results. I expect instant results. Instead I’ve frequently felt like a human pin cushion. I’ve had more needles in me in the past five years than a porcupine has twills. Through it all though, I’ve connected with family and friends in ways that I otherwise would not have.

It is my journey of LIFE, but I’ve got great company.

Traumatic Brain Injury – Invisible Disability


IMG_6026 c

Brain surgery was the easy part. I slept through it. The moment I woke in incredible pain is when got difficult. Despite the intricate skills of two brain surgeons, I was now suffering from a Traumatic Brain Injury (TBI). I didn’t recognize at the time that I was entering the “in-between.” I was stuck between who I had been and someone I didn’t know yet.

Brain surgery left me with the recognition that I’m not who I used to be. I do know that I am far from alone. TBI effects brain tumor patients, accident victims, and soldiers fighting for our country.  With advances in the medical community, more people are surviving traumatic medical events than ever before.  A mystery to the medical field, TBI leaves many unanswered questions.

I struggle with my desire to deny disability’s grasp on my life while continually having to adapt to its grip. Chronic, oppressive head pain is disabling, but it can’t be seen – or proven. Navigating the “in-between” is a new reality.  I am fortunate to have my mental faculties, but am exhausted by head pain, hearing issues, and facial therapy. Yes, exhausted by the extra effort my brain requires to sort desired from undesired sensory input.

Adrenaline gets us through what we need to live but then our brains demand down time.My “Job” is now seeking answers, treatment, and relief. Everyone has their own journey through the forest of the unknown.

Once trauma happens to the brain, remnants cling for years or life. However, it needs to be noted that “living with TBI” includes the word “living.” I had heard there would be a “new me” but I wasn’t done with the old one. In pursuit of contentment, I eventually accepted that the old me was gone and acknowledged the new one. To my surprise, I found joy. I wish I had known before I fought change so hard that there are things to cling to and others to let go of. I wish I had known to accept, grow, and live. For me it was the loss of a career yet the gain of writing. The loss of speed yet the advantage of measured observation.

The experience of having an Acoustic Neuroma(AN) and resulting traumatic brain injury is very individual even as we seek camaraderie with others.  Common threads that I’ve seen in AN people are the choice of life, a decision to share humor, and nonstop perseverance. That strong common thread compels us to move forward without being dragged back any more than we have to be.  We continue to laugh and love.  Even in this new dimension.


Lessons Learned from Brain Surgery – Humor


A sense of humor will give you a better temperament than frustration. Learn to laugh at yourself. It will help you to feel less self-conscious.

My family is always joking around about things and it was no different with brain surgery.  We laughed about pretty much everything that we could to help lighten the heavy burden that we were living.  When I say “we”, it did not escape me that even though I was the one in bed bandaged and tangled with medical equipment, “they” were tasked with keeping my spirits up.

When I was home, we laughed when my brother had to push me up the stairs because I didn’t have the energy to make it by myself.  We laughed that I used a ski pole to navigate before I got a cane.

In Florida, when I listed to the right while walking on the beach, my friends were always between me and the ocean. “No way. I’m not going to tell your family I let you walk alone and you veered into the ocean.”

When I give the wrong answer to a waiter’s question because I’m trying to fake that I actually heard, it’s humorous to see their expression when saying that I’ll pay my bill with “French fries, not chips.”

I always strive to be a “Pleasant Miserable” Person when I’m having a bad day.  I strive to find laughter and joy from a vantage point that is, simply, ridiculous.  A Brain tumor?  Deaf in one ear?  Unable to smile normally?  Unable to move because of head pain more often than I want to acknowledge?  Yea, you gotta laugh. . . once you stop crying.

Life Lessons from the PETS – Sometimes you need a thick skin

     Gabby kitten

Sometimes you need a thick skin (From Gabby) – “I’m here! Let me lie on top of you with my whiskers in your face. OH, sorry, I know you didn’t MEAN to push me off the bed. Here I am again in your face.”

(Gabby is now 15 – this picture is when she was a bitty kitten)

Life Lessons From Pets – Life Can Change In An Instant

singing paulo

While recovering from brain surgery, I had a lot of time to watch my pets.  One day, I decided to capture the lessons I had learned from them.  Here’s one of them:

Gina and Paulo, my Italian Greyhounds, taught me:

Be Optimistic, Life can change in an instant!

“Let me outside! Really, it is important! Maybe it was snowing 5 minutes ago, but it MIGHT be spring now. Really, I promise! If you get up off the couch and walk over here I’ll go outside THIS time.”