Tag Archives: life lessons

Invisible Disability and Trying to Explain It

 

It’s been awhile since I posted. Not intentionally, but sometimes it’s hard to get started again. What to say, what to discuss, what to say that’s new.

However, I was recently talking to my friend Mary, who is suffering from atypical trigeminal neuralgia. It has been frustrating to adjust to the world of disability. Let alone the paperwork that is expected – all while in pain. None of us think that our lives will ever been disrupted by a physical brick wall. But it happens. While her disease is not AN related, the parallels are strong.

Mary has going through the process of filing for disability insurance and wrote a letter attempting to explain why disability cannot always be measured by traditional definitions and measurements. The impact goes beyond simple questions related to sitting, reaching, and lifting. She was kind enough to share her letter with me and gave me permission to share on my blog. I think many will relate to her journey and the impact that disability had on her life

So, maybe I didn’t get writing again – yet –  but here’s Mary’s guest blog contribution. Thank  you, Mary, for your willingness to share with such honesty and openness.

 

Dear Disability Insurer:

I am happy to fill out these forms regarding my daily living and work history for my disability insurance application. However, I don’t feel that many of the questions are pertinent to my disability and my situation.

I have atypical trigeminal neuralgia (ATN). The Wikipedia explanation is pretty good: “ATN pain can be described as heavy, aching, stabbing, and burning. Some sufferers have a constant migraine-like headache. Others may experience intense pain in one or in all three trigeminal nerve branches, affecting teeth, ears, sinuses, cheeks, forehead, upper and lower jaws, behind the eyes, and scalp. In addition, those with ATN may also experience the shocks or stabs found in type 1 TN.”

My pain feels like a horrible toothache (like an abscessed tooth) coupled with a headache with nausea. I have constant GI issues due to the medications and have to be close to a bathroom at all times. Any movement, including walking, driving in a car, etc. can intensify the pain. The pain also increases as the day goes on and it requires Opioid medications to keep it in check.

The pain is the worst at night. Sometimes, as last night, I have an incredible urge to yank out bridges that are in my mouth due to the pain. I have to quell the desire to do so. If I am maxed out on my pain meds, I lay very quiet. Eventually, I take an Ambien and hope for relief through sleep.

I have been to more than a dozen doctors since 2014, including neurosurgeons, neurologists and specialists to seek a diagnosis and help with my complex illness. I spent more than a year searching for a diagnosis alone. Once diagnosed with ATN, the neurosurgeon, told me I wasn’t a candidate for surgery and there is nothing he can do for me. After three years of trying different meds my neurologist said he didn’t have any other ideas of meds that could potentially help me. The meds I have tried have side effects that can be as difficult as the illness. I can be ravenously hungry on one, and nauseous from another. They make me tired and lightheaded.

Dealing with constant, daily pain (practically every waking hour for me) is draining and exhausting. The constant pain interacts with my activity level, my energy and with my thinking and memory. It is debilitating.

The form asked me to describe what I do from the time I wake up until I go to bed. Right now I am able to live independently though with help from friends and family. As you also ask, I can bathe, dress myself, cook a nutritious meal, etc. However, I have learned that if I use the stove I have to set a timer. If you want to know what happens if you boil eggs and you forget to turn off the burner, I can tell you. There is a distinct popping noise…..I can make my way to the grocery store 2 blocks away and to water aerobics at the rec center a few mornings a week. I have learned that I always must park in the same spot when going to the grocery store, rec center or Target. Prior to doing so, I have thought my car had been stolen only to learn I forgot where I parked it. I have to accommodate my disability on a daily basis. Even writing this and filling out the forms required me to get help from two friends. I am well aware that my disability may require me to move to a situation where I have more support.

Most mornings, however, come midmorning, the true and only goal for the day is to ward off pain. In fact, before my disease was diagnosed, my dentists and I thought it was solely toothache pain and I went through root canals and eventual extractions of both upper incisors. I tried to have a crown placed on one of them, but it incited too much pain. So I am missing a bunch of teeth which impacts what I can eat. I can’t smile otherwise I reveal that I have lots of gaps in my mouth.

You ask how well I follow spoken and written instructions. I have word and name recall issues. I am very forgetful. I often miss appointments, which is very humiliating to me. I have a checklist of things to remember before going to bed at night, such as locking doors and windows, and making sure the burners on the stove are off. I require help to fill out the numerous disability forms I’ve faced with both the private insurance company and the government.

The form asks: Do you have any problems getting along with friends, family and neighbors? While once I was “easy going” and mild mannered, my family would probably describe me as being irritable, and irritating. Small things bother me.

As you asked, I have a pet dog, Fiona. She is my service, aka emotional support dog. She is an energetic 5-year-old pup who loves to chase balls. She is my companion in the truest sense. I sometimes worry that I neglect her when I don’t feel well. I do care for her, but quite honestly, I sometimes forget to feed her and other times I feed her twice. I have neighbors and friends who take care of her when I’m not feeling well so she’s not totally ignored. I sometimes think I live for this dog’s humor, love and companionship.

As I write this section, today is Memorial Day. In my prior, pre-ATN life, I would have enjoyed this May holiday on a bike ride or hike or playing golf or tennis or going to a barbecue or whatever. Now I’m just home for the day. I hope to plant a few flowers in pots and maybe make a phone call to my sister. Hopefully walk Fiona two blocks to the park.

You asked about my work history. In 2000 I started with a financial services company as a part time reporter. Over the years I was promoted to a fulltime reporter, then an editor and then to senior editor, a top-level position at my company. I had a thriving career. I was engaged with smart, energetic colleagues. I talked to sources that provided the intelligence for my financial analyst reports. Once per quarter I travelled to visit clients in San Francisco, Chicago, New York and Boston. There I met with our clients, portfolio managers, who were all incredibly smart and our meetings required me to be at my sharpest best.

It was during these meetings after the onset of my illness that I clearly demonstrated my weaknesses: I couldn’t come up with names/statistics etc. and looked to my colleague to help me out. When my work started to decline and I had more issues with recall, memory, etc. my boss asked me to apply for partial disability (originally through my company’s private insurance policy). My employer was accommodating and I worked part-time for a year. But even with the fewer hours and reduced work load and with no more travel, I was unable to complete my job functions successfully. So I eventually left work altogether in June, 2016.

The meds, and the pain, make it difficult to concentrate and read (I have to limit computer time). Dealing with daily chronic pain has wreaked havoc on the skills that allowed me to perform at my job. It has impacted my cognitive abilities that allow me to think clearly, read and travel.

The employment section asks me questions I’ve been asked on numerous disability forms. How many total hours did I walk, stand, sit, climb, crawl, reach? How much did I lift and carry? What’s the heaviest weight lifted? “Check the weight I frequently lifted….” It seems these forms are intended for physical laborers, and not someone whose job is like mine. My disability involves the brain and the mind.

Like many with this disease, I battle depression and isolation. Whereas I was highly social and “on the go,” prior to onset, I am mostly alone now. Some friends have been great, but many, well, I just don’t hear from them anymore. I go to a therapist every two weeks. I’m trying to figure out how to best live my life given my situation.

So now I trod on trying to make it through my day. I try to have a touch of purpose, whether it’s sweeping the floor or washing a load of laundry. I know a good chunk of the day will spent lying on a couch. TV and radio can be too noisy. So I sit, quiet. I hope I can get through the day with an ounce of grace.

Sincerely,

 

Mary

Disability and the Stages of Grief

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stones in the sand

I’ve talked to several people who have gone from an active full time career/life to long term disability due to acoustic neuroma or other medical reasons. Through those discussions, I’ve noticed a consistent pattern. It is grief – and I’ll get to that in a minute.

Becoming fully disabled feels like giving up. It feels like failure. We accept too much responsibility and blame our “selves” for physical weakness and brokenness.

I am here to tell you that disability is not for the weak. Strength is required for acknowledgement of real limitations and to speak up for what we know we need. Perseverance is called upon to fight a tougher battle than “before.” It takes tenacity to continue to fight for goodness in life and a grateful attitude when we face long term adversity.

Disability:

  • Is not death. Disability frequently stirs a desire for ability, life, and not giving up.
  • Is a process that doesn’t end often enough with a return to ability.
  • Requires bouncing between pushing our bodies to function as fully as possible while documenting our physical limitations.
  • Brings a new appreciation for life and relationships.

Living life with a disability brings a continuing cycle of grief. Everyone has a different timetable. The actual disability and grief are not cookie-cutter experiences but bond those who live it.  Each stage takes varying lengths of time as it is repeated in various forms.

Triggers can quickly springboard us from progressing to stepping back into grief. Perhaps we inadvertently are reminded of something we used to love to do that is no longer possible. Other times we may get a glimpse, through memories, how relationships have been affected by changes in health.

I decided to “map” the well documented generic grief process to disability, and here’s my take:

 Stage One: Denial and Isolation, or “this is not happening”

  • “I just need a little more time, and I’ll beat this.  Enough already – please.”
  • “I’m embarrassed and really can’t face the world. How will I ever be in a social setting?”
  • “If I just think good thoughts a little harder my body will heal.”

Stage Two: Anger, or “stomping my foot”

  • “This is not fair!  I don’t deserve this. Stupid (fill in the blank)”
  • “I’m not comfortable with vulnerability.  I do not want to ask anyone for help!”
  • “The world is continuing without me in my prior role. I wasn’t indispensable. Really?”

Stage Three: Bargaining, or as I affectionately call it – “If Only” stage

  • “If only I ate better, my body would recover.”
  • “If only there was something I could do to make this go away.”
  • “It must be my fault, and I will be stronger from now on.”
  • “The medical world can cure anything, can’t they?  Isn’t it a science that understands everything about our bodies? If only I could find a doctor who understood my case.”

Stage Four: Depression, or “I’ll just be under this rock over here if you need me, but I’m guessing you won’t”

  • “I’m exhausted. I’ve tried everything. It’s a lost cause. Why even try to be happy?”
  • “Why continue to look for answers in the medical community to mitigate pain, tinnitus, or limitations.”

Stage Five: Acceptance, or “inhale, exhale”

  • Life sucks but I have things to do. I’ll manage my disability so that I am still aware of the joys of life.
  • “I love life and will squeeze every bit out of it that I can. I will pay to play.”

As time goes on, we appreciate being in the acceptance phase and learn to recognize it.  We’ve learned not to just cope by treading water but have adapted to living life beyond breathing.  We will have triggers that pull us back into earlier stages of the grieving process but learn to claw back to acceptance again — as quickly as we can

Disability is not giving up but the beginning of a new journey.

 

 

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 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.

Acoustic Neuroma brain tumors and Fatigue

1977 - I thought I was tired then. . .

1977 – I thought I was tired then. . .

I would have written this post sooner, but I was too tired.

Merriam defines fatigue as “the state of being very tired: extreme weariness.”  If you ask an acoustic neuroma survivor about fatigue there is a good chance that they will share a new appreciation for the word. We’ve all been exhausted in life, but there is something about a craniotomy that takes strength that is hard to regain. Yet it also brings out a strength we didn’t know we had.

Fatigue is a very familiar word for anyone who has had treatment for a brain tumor. We need naps. It’s hard to explain the feeling of such fatigue coming over you in the middle of the day that you HAVE to take a nap. Sometimes it is emphasized by a dry eye that will not be satisfied with artificial tears. Closing it is the only way to regain comfort for the remainder of the day. Sometimes it is a dizziness from overtaxing our vestibular (balance) system. Other times it is a matter of just being sick of that darn ringing in our ears and needing to escape it for a short time while unconscious. What used to be a ten minute cat nap is now an hour or two.

Fatigue is a recognized symptom of an AN, but not always discussed. There is an assumption that fatigue is caused by the surgery and recovery process but will go away when “healed.”  However, it is frequently a long term or permanent state. It is intensified by drugs that often are required for lingering issues after treatment – pain and depression as examples. It is also caused by the extra work that the brain has to do to compensate for balance or hearing.

There are synonyms for fatigue. Burnout is one that is usually associated with burning the candle at both ends. Burnout for a brain tumor survivor may be from continually treading water and trying to regain one’s old self. It may be from trying to return to work or life having to adjust to new challenges.

Frazzle is another synonym, implying out of control or mentally scattered. That is also accurate for AN survivors as we attempt to sort out sounds if left single sided deaf. Where did a sound come from?  Or what is the person in front of us saying when there is background music or noise. We can feel frazzled and feeling unbalanced from excessive movement.

Prostration is a word that I totally get now. Being powerless over the way that your body has removed control over when a good day will come or when you find yourself flat out on the ground either face down (prostrate) or face up with arms flailed to as if we are making a snow angel. Exhale. . . .

Antonyms exist for fatigue also. We do have days when we feel refreshed, and we appreciate them. We look at the puffy clouds against fall colors and inhale with a love for life and the people in our lives. We feel revitalized when we realize how little we now care about things that may have been enormous in our prior lives. We feel rested when we have a good night’s sleep without being awakened by a headache.

We have learned to live minute to minute. We have learned to take one step at a time. We have learned to live with fatigue and know when we have precious moments of rest and peace.

A common statement that I hear is “I don’t know how you do it.”  Well, like with anything, one step at a time. One obstacle at a time that is overcome or adapted to. Although we have fatigue we also have a strong desire to squeeze every moment out of life.

Reference – http://www.merriam-webster.com/dictionary/fatigue

The Good Side of Surviving An Acoustic Neuroma Brain Tumor

IMG_5452 cI have to tell you that I still kind of bristle when someone says, “Hasn’t this turned out to be a blessing in your life?”  Well, no. I still would prefer to have NOT had a brain tumor. I’m still working on the “be thankful in all things” part of my experience. I just have to say.

However, given that I did have one (without my vote), there are good things that followed the experience. I have a new appreciation for:

  • Life — At times, because depression is a big part of Acoustic Neuroma recovery that is frequently unspoken or acknowledged, I felt guilty for a long time when I thought death would be better. I was in pain and my life was upside down and I just didn’t see the point. However, with a lot of work, I do now see the value of life and treasure it.
  • Family and friends – see above. If it wasn’t for the people in my life I wouldn’t have had a life preserver to hold while I regained my bearings.
  • The medical profession – not that I wasn’t impressed with doctors and nurses – but when you go to sleep not knowing if you will wake up, you pay more attention.
  • Modern medicine – Having access to modern medicine and state of the art equipment made a huge difference in my outcome. Even though I do still have “issues”, it sure turned out better than it would have in the pioneer days.
  • Research – Even as advanced as medicine and disease understanding has come, there is more that we don’t know than we do know. Advancements are still needed. Research into the cause of disease and the cause of side effects is lacking.
  • Little moments – Sometimes just having one good moment or experience is worth a day of pain in payment. That moment is savored more and replayed in my mind as I distract myself from pain.
  • Big moments – I just, perhaps arrogantly, expected to be here for my daughters’ weddings and the birth of grandchildren. I now appreciate those moments and acknowledge what I would have missed if I hadn’t had survived a brain tumor.
  • Playing through pain – Sometimes a precious moment happens to coincide with an incredible headache. Sometimes I find it possible to push the pain back enough to be in the moment that will never come again.
  • Dog intuition – my dogs showed incredible insight as they slept when I slept and played when I played. They kept me grounded by reminding me that life does go on and they needed food, walks, and to go outside. They are now gone but I have wonderful memories of their emotional support when I needed them.
  • Cat indifference – My cat is always there to curl up for a nap, but has few other demands. She has no use for my complaints and just flicks her tail in response. She helps me recognize that I am not the center of the universe. There are bigger issues, like catching a mouse.
  • Sight – even though I can’t see as well as I used to and struggle with a dry eye, I appreciate what I can see. I appreciate colors and variation in shades. I appreciate sunny blue skies as well as the darkness of ominous snow clouds.
  • Hearing – single sided hearing reminds me that I can hear. Not optimally, as nature intended, but I still hear my grandson’s laugh and adorable voice – even if I can’t figure out where it is coming from. I can still hear my daughters when they say “Mom.”
  • Silence – I no longer have silence due to the ringing in my head, but I can appreciate how the ringing can calm down in quiet, tranquil settings.

The list could go on.  So, bottom line – I don’t recommend having a brain tumor, but it does help us grow in our appreciation of life. It does help us prioritize what is important and what is

Life is worth living

Life is worth living

insignificant. It is something that we want to hold tight. We know that life is short.

 

Acoustic Neuromas – Alive. . . AND. . .living

Sally Stap

Having an acoustic neuroma brain tumor gives us a new view of life, relationships, and priorities.  While we each have lived a unique although shared journey with our outcomes, the word “LIVED” needs emphasis.  Even as we seek understanding and self-acceptance, we are alive and want to squeeze every drop of pleasure possible from each day.

Despite all or any issues that we deal with daily, there are times when we just do what we want to do.  We spend a day shopping too long until we are drop-dead tired with a head that says stop.  We go to a concert despite the tinnitus that will be louder afterward. We swing at the playground with our grandchildren, or children, even though we’ll feel woozy when we get off.  It’s the price we are willing to pay for fun with our families and loved ones.

This past weekend was just that for me.  My family has been going up to Mackinac Island, at the top of Michigan’s mitten, for more years than I can remember.  Not every year, but at least every few years so we can enjoy the island’s traditions – ferry’s that go back and forth to the mainland, horses and bicycles only, fudge in every other store, and unpredictability in weather. Sometimes it’s hot, hot, hot.  Other times it’s impossible to cut the wind with seemingly endless layers.  This time it was pleasant but foggy.  My best laid plans to take a ferry ride under the Mackinac Bridge were thwarted by thick fog.

I know that wind and too much activity is a problem for my head.  However, this weekend I lived life.  I rode on top of a ferry to the island with my sweatshirt pulled tight over my ears.  I closed my eyes and absorbed as much of the wind and air and life that I could.  I overindulged in Fudge (basically a requirement on the island).  I saw my grandson touch a horsey for the first time.  I saw the awe in his eyes at the strange sights of horses and bicycles crossing paths.  I saw my daughter manage to not scream when a butterfly landed on her head.  The love for her child gave her a brave, but guarded smile as she showed how lovely the experience was.

I made sure that our family all wore matching t-shirts, which I know is absolutely dorky.  But we lived and loved another weekend away on our “Stap-inaw Mackinaw 2014” adventure.  Of course, that included asking a stranger to take a picture of twelve people in matching t-shirts waiting to head in different directions for the day’s activities.

Today I’m at home again, and accept without guilt that I slept all morning after rising to take some medication.  Disabled isn’t dead.  Disabled is adapting to life by giving in to our less than perfect body while pushing it to live life.

Yes, acoustic neuromas bring many challenges, but they also bring appreciation for normalcy.  They emphasize that life is as delicate as a butterfly’s wings.  They remind us that, even with one ear, we can hear the clip clop of horses hooves.  We are alive. . . AND living.

Acoustic Neuromas – Alive, but. . .

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Acoustic Neuroma survivors are just that. We have survived. We are alive. We are grateful to have days and moments with our families that we would not have had without intervention.

I was able to walk my daughter down the aisle at her wedding. I have been able to hug, kiss, and adore my grandsons who I might not have ever met. I’ve loved every minute with family that is spent laughing, sharing, or even crying. I’ve truly appreciated the friends in my life who I can travel, play computer games, or have lunch with. I have been enriched by meeting people in my life who I wouldn’t have meet prior to a left turn in life caused by brain surgery.

Other AN survivors would say the same thing. We know that life is a gift not to be wasted. We know that memories are being made that might not have been.

But. . .

It’s OK to have a down day. Like any loss in life, the absence of something is felt in our changed hearts. So, it’s OK when we have a day to say “Yikes, just let me exhale and feel sorry for just a minute.” It’s good to adapt to life’s changes; even as it’s OK to feel disappointment. It takes energy to move forward, which means we have to tuck into ourselves at times to reach our spiritual reserves.

Acoustic Neuroma brain tumors leave each with unique check marks on a menu of outcomes or ongoing issues:

For those impacted by facial paralysis, full or partial, we miss our smiles. Faces are the first thing that people see. We don’t think we’re adequately expressing what we’re feeling when part of our face is frozen, experiencing Synkinesis, or tied up in knots. Yes, I reread the blog post that I myself wrote about smiling and pictures after squirming in front of a camera recently for friends who sincerely want me in their memories. Those around us see into the moment, not the expression captured in a picture. We have to continually remind ourselves of that.

For those with trigeminal nerve damage it means a loss of sensation on the face; or a change in the taste of food.

For those with single sided deafness – yes, we are also single sided hearing. But we miss being able to discern the source of sound. We feel apologetic to anyone sitting on the deaf side in a noisy restaurant after we’ve said “what?” for the tenth time. We feel bad for people who think we were indifferent when, actually, we didn’t even know we were being talked to.

For those experiencing nonstop tinnitus, we miss silence. There’s nothing like the silence of a summer night dotted with crickets chirping and frog croaking. We remember that sound of nothing, but live with ringing in our ears which varying from annoying to downright irritating.

For those with head pain – Post-craniotomy head pain is not merely a headache. Finding energy to compartmentalize pain and continue with life can be exhausting. Medicating to the point of less pain leaves us exhausted or downright unconscious.

For those with dizziness or balance issues – We miss window shopping as we can’t walk forward looking sideways anymore. We find ourselves in an awkward pile on the floor more often than in the past. We laugh it off, but it can be scary.

Recovery is an ongoing process with ups and downs. For anyone for whom those swings have not stopped, support and encouragement from other ANers in support groups is priceless. Acceptance and love from people in our lives is immeasurable. We delight in normalcy. Thank you to the people in our lives for listening. Not trying to fix the unfix-able but for providing constancy. Thank you for letting us feel sorry for ourselves on occasion and then pushing us to see the good in our lives. Thank you for reaching back as we reach out.