ANAwareness – Acoustic Neuroma – Laughter

sallynancy

 

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.

Acoustic Neuroma – Facing the Un-Face-Able

Red flower

My latest ANA Ambassador contribution about facing disability is now up at

https://www.anausa.org/patient-ambassador/47-menu-articles/9/485-sally-stap

Here it is directly:

I had been told to expect a few miserable days after brain surgery, but it would get better. When I woke, all my energy was immediately sucked up by survival and pain management. It was a full time effort to keep my sanity (which is still up for debate) as I dealt with pain, new single sided deafness, a face that was half immobile, an eye that wouldn’t close without assistance, and balance that required a cane and supervision on stairs. Brain surgery recovery, for me, was much more than I had allowed myself to anticipate.

What I learned, when my body veered sharply from the expected and ideal recovery path, is that I had to become my own advocate. It was only I who could speak up for what I needed. Nobody was there to tell me how I felt. Nobody could tell me when I would feel better. Only I could determine what my body was capable of.

I had arranged to take three months off from work. The doctors had predicted that I could return to work part time after six weeks, but I pushed for a longer recovery because I had a job that required weekly travel and 120% presence. I was relieved when the doctor agreed on 3 months. I felt that I would feel normal in six weeks, and have six more to really heal and feel rested and healthy before returning to work.

My surgery was November 3, 2008. I spent 8 days in the hospital and then had family living with me for a few weeks. I was self-conscious of my half paralyzed face, but knew that I would find the inner strength to get past interacting with people. In my home, single sided deafness was reasonable until my first trip out in public where I learned about the challenges of SSD in a noisy setting.

The most challenging issue was my head. Day and night I had excruciating head pain. At two months out, I had put all of my energy into healing. I had rested for ridiculous lengths of time. However, I had to acknowledge I was not following the predicted timeline. I was still struggling to survive. I was not able to get through even one day without total exhaustion. I was not going to be able to return to work. Just acknowledging that fact to myself was difficult. Initially, it was like holding in a secret that was inevitably going to explode if I didn’t speak up. It was not enough to follow familiar patterns of the past by pushing past obstacles to get what I wanted. If I were to deny that I could work, it would be painful and embarrassing. I had failed to fulfil my supporters’ predictions of success!

As I pondered, felt sorry for myself, and tried to work around the biggest obstacle I had ever faced, I realized that I could not will it to happen. I could not force my body to return to normal nor think my headaches away. With physical pain, exhaustion and depression, I knew that I wouldn’t be able to focus on work and successfully return to my career.

So I started to say it out loud to family, friends, and then my colleagues. It was difficult to say the words, “I am not going to be able to return to work.” I had to lift my hands and admit defeat. That was not who I was. I met my deadlines regardless of what it took. Now, for the first time in my life I was having to admit that I wasn’t able to overcome an obstacle.

I told myself I wasn’t giving up, but just taking some extra time. I filed for long term disability, believing I merely needed a few additional months to allow my body to rest and heal. One of the disability company’s requirements was that I file for social security disability, which I laughed at. There was NO way that I was THAT disabled. I compliantly followed the process, convinced that it was going to be wasted effort because by the time my application was processed and rejected I would be back to normal.

There was something in my heart that cracked the day that I found out I was disabled enough to qualify. My application was approved the first time, which I had heard was rare. I had to find the energy to demonstrate disability when I was having trouble fighting to get through each day. Head pain is hard to prove, but it is also hard to disprove. It is an unmeasurable and miserable state. I dug deep and did what I had to do to take care of myself.

Well, months turned into years and I am still dealing with head pain. However, somewhere along the way, I found peace with the new me. I feel compassion that I didn’t know before. I have been given insights and respect for living in chronic pain while staying pleasant and present. While searching for meaning for all of this, I discovered I could still contribute to the world – just in a different way. I could write about my experiences, feelings, and hope. I could connect with people who felt misunderstood. I could express myself in painting where it didn’t matter if my hand has a tremor, or if I had to quit mid-project for a nap. I could find joy in my connection with others.

It all started with knowing my body and being my own advocate. Only we can take care of our precious selves. Only we can speak up for what we need.

 

Life is Finite

Beaver Island

Beaver Island, Michigan

 

Do you ever stop for a just a moment and think about the specific point in time that you are living? Maybe it’s soundless; or piercingly jarring. Maybe the air is filled with the fresh scent of spring flowers, or dampened with rain. Maybe the air is filled with smells that we would prefer to escape. We may be cold and curled up under a blanket; or hot and peeling off layers until we can breathe again. Maybe we are distraught, or dancing with delight. Our mood may be right at the very narrow ledge of slipping down or up. However, wherever we are right now, we are alive.

I don’t know what the absence of sound is anymore since I have roaring tinnitus. I don’t know the absence of pain since my brain surgery — but I am alive. I am here. The people in my life allow me to stand with the strength of others instead of struggling alone.

I lost a friend recently. Tragically and senselessly. A friend who was younger than me. Healthier than me. Someone who I would have BET would outlive me and hopefully stop to remember me for a moment after I passed. But that is not fate. That is not the world we live in. That is not the world that my friend just left.

My heart hurts even as I laugh at memories of delight. We worked together and played together. I respected him immensely. I admired his incredible intelligence along with an amazing and unique mix of personality. We had so many stories that when we got together, we would revisit memories until we were almost falling out of our chairs in fits of laughter. And then we would add one more adventure to the beautiful portfolio of stories. A portfolio that ended too soon.

We often spin the gears in our brain trying to figure out why life is the way it is. We complain about the unfairness of it. We pout because doors have been closed to us.

But we are alive to pout. We are alive to complain. I prefer to be alive reaching for joy. Alive to reminisce even as I move forward. Alive to feel joy and treasure friendships that allow us to feel pain when the door to their lives close. Because to feel, to cry, and to laugh is to live. To feel heaviness in our hearts is to acknowledge that we experienced love, friendship, and camaraderie in this journey we call life. Life brings beauty, even in storm clouds.

ANAwareness – Fear and Acoustic Neuroma Diagnosis

OLYMPUS DIGITAL CAMERA

I was asked to be an ANAwareness Week Ambassador this year by the Acoustic Neuroma Association.  May is Brain Tumor Awareness month, and May 10-16.

This week I contributed a post on Acoustic Neuroma’s and Fear which has been posted on ANA’s Facebook page.

ANAUSA

If you can’t access Facebook or are on a mobile device, here’s the article: 

When I was fifty-one, in the midst of a very busy life, I was rudely interrupted by a brain tumor diagnosis. I didn’t have time for a medical crisis, let alone the horror of anyone entering my skull to treat it. However, through fear and an inevitable journey I learned that I was capable of surviving and growing. I would not only live, but learn to appreciate living in a way that I had never tasted before.

Life takes us where we sometimes don’t want or plan to go. Just like falling off the hay wagon in the middle of a hayride, we find ourselves flailing and reaching for something to steady our falling selves. Pain allows us to better appreciate a lack of pain. Despair allows us to recognize joy when it returns. Compassion received breeds the ability to be compassionate.

I had little fear when I went to an audiologist to measure a distinguishable decrease of hearing in my right ear. I wondered, somewhat casually, if anything could be done to correct an inner ear problem. After administering the test, the audiologist sent me to an ENT because he said my hearing loss was not normal, and possibly as bad as a brain tumor.

That was my first moment of fear, although quickly dismissed. I believe that anyone going through a medical crisis experiences fear. There’s an initial moment when the world changes. Fear and apprehension fills our minds when we get a hint that something is wrong.

Fear means we aren’t fully in control of our reactions, and each have our own unique ways of dealing with, denying, or sharing fear. It might be dry humor, prayer, or meditation. Some will curl up in a ball while others will scream. For me, fear was held closely to my heart, with casual sharing of potentially alarming information. “By the way, I might have a brain tumor.” For me, fear was externally silent or lighthearted; but very loud internally.

Fear began to germinate with the first use of “brain tumor.” Initially it was a seed deep inside pushing up as I pushed down. Unable to wrap my mind around actually having a brain tumor, I fit an MRI into my schedule. I went alone to my appointment to hear the news, willing it to be minimal. However, within a few minutes of seeing a large white blob on a computerized image of my brain, I learned what an acoustic neuroma brain tumor was specifically for Sally Stap — a benign, large growth that required immediate treatment. Fear sprouted and quickly grew from my stomach and branched to fill my heart and lungs. The word benign had deflated my worst assumptions but added confusion to the mix of emotions. I would live through this?

I spent all my energy attempting to control my involuntary reaction. Fearful not of the tumor, but fearful of breaking down in front of people. Isn’t that silly? I tried to not shake, or cry, or stammer. I wanted to speak, but words would not come. My mind raced with questions but my mouth quivered. Everyone is different, but we all fight that balance of voluntary and involuntary when we hear the word officially. Telling family and friends felt surreal, as did all planning for treatment. Fear ranged from controlled worry and fascination, to the desire to escape my body.

Always independent and private, each step of the journey required me to expose more of myself. First I could only say there was an abnormality. Eventually I was able to verbalize the words “brain tumor.” I could no longer keep fear contained in my imagination when the diagnosis became real. Fear taught me that it’s okay to depend on other people.

I was referred to Mayo Clinic and had to wait a couple weeks for an appointment. During that time, I did a lot of internet research. ANA forums allowed me to hear from people directly to understand how broad each outcome is and what I may or may not encounter. Knowledge is power so I learned what I could but then walked in the woods to abate my fears and calm my soul.

When I met the doctors at Mayo Clinic any discussion of treatment options was cut short as I was told surgery would be required. My tumor was large, I was displaying symptoms, and the tumor was pressing on my brain stem. What was important is that I was fully confident in the team I chose for treatment. I spent a month prior to surgery breathing, praying, and walking in the woods a lot. I talked to family, and had lunch with friends. Fear allowed me to depend on others and accept help.

On surgery day, sitting on a gurney in pre-op brought restlessness. I prayed. I wanted to be unconscious. As each medical professional did their part to prep me, surgery and its outcome was creeping nearer and slower. Having my doctor’s initials scribbled behind my ear raised the hair on the back my head. Entering the operating room was cold and noisy. I heard metal on metal as the instruments were prepared. I felt peace. It was time. I put myself in God’s hands and went to sleep, fear put aside for the moment.

Waking up brought new challenges. The inability to escape pain brought fear that I had no energy to acknowledge. Each unpredictable step of recovery with few definitive answers was terrifying for a “black or white” person like me. Only when I learned to accept that I’m living “only in the moment that I’m in” was I able to gain the gift of living and not fearing. Only when I learned to manage my reaction to pain and adversity by relaxing and breathing was I able to find joy in my new and different self.

 

Acoustic Neuroma Life – Some days are up yet others. . .

My day hasn’t been all sunshine and roses. Oops. I’m determined to not use cliches in this blog entry. I want to find new ways to describe how it feels when “the bottom falls out”, or you “get that queasy feeling in the PIT of your stomach”, or “are blindsided” by emotion or circumstance. The bottom of life falls out and you go into a sinkhole?  What is a stomach pit?  Learning something unexpected leaves us feeling like we were plowed into a snowbank while walking along a sunny, summer path.

Can you tell I’ve been having a bad day?  I will be candid and say that out loud. It doesn’t matter why, because it isn’t the first or last. What matters is how I process it.

The day I’ve been having is heavy. It’s one of those days when I am not a cheerleader for anything. I feel lousy. My heart has become over weighted by “stuff’, which is pushing down on my abdomen (technically not my stomach) to cause crowded sensation and a squirmy feeling. A feeling that I don’t like. A feeling that I want to step away from.

Sometimes we push so hard to keep moving forward in life – and that is for everyone, not only acoustic neuroma patients – that we don’t take time to breathe and regroup before the next push. Attending a noisy party where we look straight into someone’s eyes to find that it wasn’t their voice we heard. A push to compartmentalize head pain, convincing everyone and ourselves that we’re just fine when we aren’t. It’s a fact that sometimes pain wins. Sometimes that next push is just getting up in the morning with a wonky head and buzzing in our ears. Sometimes it’s reaching deep for a sense of humor when all we really want to do is cry.

Well, today I had thoughts flowing through my head about moments lost, memories forgotten, regret for what could have been. I belabored lost opportunities in my life and things I cannot do. I failed to acknowledge successes by minimizing them because I’ve had a hot, soaking immersion in self-pity.

Life is not fair. I don’t get it. I don’t like it.

Well, what did I do about it?  First I took a nap. Then I went for a walk in the very cold Michigan spring air. I inhaled and exhaled. I gave myself time to wallow, but reminded myself of the reasons I prefer to keep going. I reminded myself that I can breathe. I can find pleasure in new things. Yes, kicking and screaming at the things left behind, but new and pleasurable nonetheless. If we lived our lives based on losses, we’d still be missing our first favorite t-shirt. Like the navy blue Adidas t-shirt that I had when I was twenty. (not that I remember how comfortable it was or wonder when I let it slip away. . .)

I love life. Unfair, stinky, painful life. I recognize that some of the toughest times that I’ve experienced left me feeling stronger or closer to someone in my life. I love joy and the feeling that inflates my heart with warmth instead of weighing it down with stuff. Today I had to take it back a couple steps from my usual fervor. I stopped looking at the pile of stuff that needs to be addressed and focused on the next minute, and then the next hour. I sent my pouting mind to a happy place. A place where I am alive, taking things a day at a time, knowing that a bad days will be followed by good ones. And knowing that really bad days allow me to recognize and appreciate the joy of a spectacular day.

Thanks. I feel better.  Time to go play with my new puppy.

Acoustic Neuromas and New Beginnings

Maxwell

Maxwell

Sometimes we need new beginnings. Sometimes new beginning are thrust upon us.

Have you ever pondered how many new beginnings you’ve had in life? We frequently focus on losses, and uninvited change. However, each of these events have also provided new beginnings. Each event starts with a feeling in the pit of our stomachs that tell us we can’t but then we do.

I have had many pets in life, and have loved them all. They delighted and frustrated me. But they have all passed on. Today I am in the midst of a new beginning with Maxwell, my new pup. I could have gotten a breed that I had previously had, but chose to get a mixture different from anything in the past.

Maxwell and I plan to have many happy years together. That may or may not happen, but I can live today and enjoy where we are now. I am still sad about the loss of each and every one of my previous pets, but I’m delighted to be at a new beginning, again.

My career spanned many years and included delightful successes as well as frustrating changes or lost opportunities. When I look back, each of those organizational or company changes brought new beginnings. I met people who I would not have known. I missed some (admittedly not all) coworkers, but made new acquaintances and lifelong friends.

I never, ever, ever would have chosen to have a brain tumor. However, going through this experience has given me gifts that I would not have received otherwise (yea, in addition to unwelcome gifts of headaches, constant ringing in my ears, single sided deafness and facial paralysis issues). I’ve seen some common threads among people who have struggled with the unthinkable and survived; even if survival meant a new life.

Compassion – I appreciate the medical community more now because I have experienced the commitment and caring that is consistently provided to people in their most vulnerable states. At times I had admittedly been frustrated by a lack of answers, but the compassion that people are capable of is humbling. The way that the Acoustic Neuroma world circles newbies into the fold with support and answers is inspiring.

Humor – Through my writing, social media groups, and speaking with people, I’ve developed a much better appreciation for not only what we endure in life but how humor always seems to keep us from going over the edge. We are happiest when we learn to laugh at ourselves and circumstances.

People – I have wonderful people in my life now who I would not have met if I hadn’t endured what I did. Friends, acquaintances on social media, and readers of my book. I’m feel blessed with the people in my life. Even as I’ve grieved the loss of people who have moved away in their lives.

New Opportunities – Each person can identify a way that their lives has been redirected. For me, I have discovered the love of writing and hearing that my words connected with a reader. Writing is something that I can do even while in pain. Perhaps lying motionless, my mind can divert to thinking of ways to describe things in words. Maybe the pain of the moment. Maybe with thoughts of where I’d rather be and how it would feel.

Courage – I have been humbled by the common thread of courage in the Acoustic Neuroma world. I think having to face an unthinkable obstacle gives us courage. I found the courage to write and blog. Sometimes I only am able to find the courage to get out of bed, but I do. Others have faced physical challenges just to show that they can. Running, skydiving, rock climbing, and biking have been wonderful progress markers for people following treatment. Graduating from walker to cane and then just plain walking takes courage for others. Courage keeps us moving forward.

Again, I address the glass half full or half empty. I, Sally Stap, choose half full and capable of holding even more. I choose to see the world as a collection of individuals seeking joy in life and not giving up.

Myths About Acoustic Neuroma Brain Tumors

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“Oh no. You have a brain tumor. Cancer stinks.”

Yes, cancer is a terrible thing, but not all brain tumors are cancerous. Acoustic neuromas, as well as many other types, are almost always benign.

“When is your surgery?”

Treatment is not always surgery. Many patients are put into a “watch and wait” category, which means they are doing their best to continue day to day life with a mass in their brain. If there is not much growth or side effects, the tumor is left alone for years or forever.

Radiation is a second form of treatment. The tumor is radiated and dies, leaving the dead tissue inside. Radiation avoids the challenges of surgery, but can also bring the side effects of hearing loss or facial nerve damage.

There are many tumors that require surgery though, and some cannot be fully removed leaving patients at risk of regrowth. Many times a balance has to be made between retaining facial, balance, and/or hearing function with complete removal. This decision is usually made in the operating room. Doctor’s always strive to remove as much as possible.

Which leads us to the biggest myth:

“Benign is not harmful”

Benign is not malignant and that is a good thing. However, Benign does not mean that radiation or surgery was a simple in and out procedure. It doesn’t mean that you didn’t have damage to your body.

“You’re the same person, right?”

Well, actually, no. Even though an acoustic neuroma is at the cerebellum and brain stem and not in the frontal memory part of your brain, we have been changed. Maybe we have the same personality, but possibly muted. A thoughtful person in the past may now be much more appreciative. Individuals who were pain free in the past and unaware of what a migraine headache is are now learning to live with chronic pain. Perhaps without balance issues prior to treatment, that person is now careful to not turn too quickly – or may need a cane. Sometimes a person is now less tolerant of some things and more forgiving of others.

After AN diagnosis, many of us have an admittedly better lifestyle. We are more aware of our mortality and the importance of eating, sleeping, and exercising well – and consistently. We are more aware of relationships and milestones in life.

Many have shifted from living with a bundle of non-stop energy to now being fatigued by the extra work our brains have to do constantly. We learn that taking naps is a normal part of life and not something to feel guilty about. Our brains demand extra sleep to cope with pain, tinnitus, and balance challenges.

While many AN patients now have a better appreciation for life, they now battle depression – a physical reality as part of recovery. It’s a tricky combination to acknowledge and battle depression even while grateful for life itself.

Many of our friends and family take a while to recognize that the life of the party before is now unable to be in loud settings. An extroverted, life loving person is now perhaps more withdrawn in loud settings.

Not a myth – We are still here.

We are happy to see things that we may have missed given different circumstances. We want to push past our new realities and are a tenacious bunch. Everyone is changed by significant life events, and an acoustic neuroma brain tumor fits nicely into that category of “significant” – even though it’s benign. . .

FYI, here’s the definition of Benign and Malignant:

Benign Tumors

Benign tumors are typically slow-growing and rarely spread to other areas of the body. They often have well-defined borders, so surgical removal can be an effective treatment. However, the location of a benign brain tumor can have a significant impact on treatment options and be as serious and life-threatening as a malignant tumor. Benign brain tumors can be considered malignant if they are located in areas of the brain that control vital functions like breathing

Malignant Tumors

Unlike benign tumors, the cell structure of a “malignant” brain tumor is significantly different than that of “normal” brain cells. Malignant tumors tend to grow faster and can be more invasive than benign tumors.  Malignant tumors are life threatening. Sometimes malignant brain tumors are referred to as “brain cancer,” though they do not share all of the characteristics of cancer. Most notably, cancer is characterized by the ability to spread from one organ to another. It is very rare for a primary brain tumor to spread beyond the brain or spine.

Source: http://www.abta.org/brain-tumor-information/diagnosis/malignant-benign-brain-tumors.html

 

Acoustic Neuroma Life – It’s a New Year

Fortune

Fortune

 

Welcome to 2015!

Years ago when I was too lazy to cook, my family established a holiday tradition of Chinese Food for our gatherings around the New Year. This year we added ice cream sundaes, which I have to say was a great pairing. We got together at 11:00 am to accommodate naptime for my grandsons, and celebrated that we were all able to get together at the same time with the exception of a nephew who had something more fun to do. Well, to clarify – everyone who lives in the USA (miss you Kendra & Adam).

I think fortune cookies are silly. But I am the first one to break them out after dinner. I always anticipate my “fortune”, which will be a prediction, stupid quote, or sappy “feel good” line. Yes, despite many disappointing fortunes, I love opening the little cookie and squinting, then searching for reading glasses, to read the tiny message. This year mine said:

“You will have good luck and overcome many hardships.”

Okay. . . that was contradictory – and true. In just reviewing the last year, I can see both.  Of course, we have to look back to brain surgery six years ago to see the biggest hardship that I’ve faced. Six years of chronic pain has not been fun. However, I recall loving life in 2014 and being present. I wake up in the morning, even with a now familiar groan of head pain, grateful for the opportunity to live another day. Every day that I live I appreciate in ways that I never took the time to do before.

I look back fondly at 2014. I gained a new grandson and my toddler grandson continued to become cuter all the time. (yea, hard to believe) I had some great interactions with other writers. I’ve had amazing encouragement and feedback from readers of my blog and book. I took up encaustic painting and also snapped a few pictures of our amazing world. I feel that I’ve had good luck. (oh, let’s not forget the amazing stick art that I’ve mastered for this blog)

Oh, yes, the hardships came too. I had a 12 day hospitalization for head pain and a brief return to Mayo for skull surgery with no answers for my headaches. And if that wasn’t enough, I broke my kneecap in Germany — BEFORE we make it to the Chocolate Museum (yes, really). In 2014 I lost my two “last” pets that saw me through some rough times – Gina the Italian Greyhound and Gabby the noisy cat.

I had the good luck to experience feelings.  Even though I don’t appreciate spending days in bed with a pillow over my head, it helps me feel lucky on days that allow me to enjoy life. I’ve learned to inhale and exhale.

2015 is starting out fresh. My knee is healed and I am delighted to be walking again. Every time I bend my leg, I smile.  Last year at this time I took my knee for granted. I have an empty house and fondly remember many pets throughout in my life. I find myself eager to get the next one despite an uncountable number of groans at cleaning up messes and being woken up to go outside in the midst of winter. Those pet headaches and groans have been far outnumbered by the number of looks, nudges, walks, and naps that I’ve had with wonderful four legged companions. While I grieve the loss of two more, I rub my hands together in anticipation of who will be next.

Yes, 2015 will bring good luck. . . and because it is LIFE I know there will be hardships that I will overcome.

Happy New Year!!

 

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.