Loss Means You Are Alive

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Acoustic Neuroma – How I Face My Face

I’m hard on myself, always pushing for progress. Critical of myself and always falling short of my own expectations. Not acknowledging that perhaps some things are beyond my control. One simple example being facial paralysis. I consistently fuss over of how much I have not healed – or ever will – rather than how far I’ve come.

Facial paralysis is hard. The first few months were the worst. It’s hard to watch nothing happen. It’s painful to wait for a healing rate of 1 mm per day. I was told that it would be at least seven to eight months before I could expect any healing and much longer before I’d know my “final” healing rate. At the beginning of that seven months it could have been twenty years.

However, I was given hope. I know that many people have to swallow the tough news that their facial nerve was completely severed and there will be no healing. There are possible surgical options in those cases, but that is a different path than I traveled.

Since the initial trauma during brain surgery, I’ve had a lot of improvement. People tell me they can’t tell, which is an emotional dilemma of its own. I fully accept their perception and appreciate their encouragement but am screaming internally that it is NOT ME! I wonder if they are truly looking at my face because it still looks incredibly abnormal to me. It’s such a contrast to process the difference between what I see in the mirror versus what I’m told by others. I recognize that they are seeing a face in motion that frequently smiles where I am studying a motionless direct glare of disappointment. I do appreciate that each person in my life does not stare at my face in a medical analysis mode.

Regardless of my frustration, I see improvement if I consistently focus on small changes. Improvement that some people would dance in the streets with delight about – and others see and are reminded of their more advanced outcome.

I have learned more about facial paralysis than I even thought possible. I am not a medical professional but as a person living it, I’d like to share a bit of what I’ve learned. I am just a girl, standing in front of a mirror, wishing I had my old smile back. (yes, that was a corny reword from the movie Notting Hill but I think you’ll get it and maybe smile a bit.)

First, while you are waiting for the facial nerve to heal from the brain at, prior to healing showing, here are some things that may be helpful:

– Regular use of a heating pad on the effected side of your face on a daily basis helps blood flowing for optimal healing.
– Gently brushing your cheeks with your fingers reminds your brain that your face is still there.

As healing begins what I didn’t know is that my muscles seized as the nerve healed. So, I had the characteristic look of a raised lip – my cheek muscles were pulling up as they seized. Through facial therapy, I learned that there was a lot of stretching that would help.

However, my fingers got tired and I couldn’t stretch things well inside my mouth. So, I experimented a bit and discovered the value of using a baby teether. This tool helped me significantly. (If traveling without, a spoon will do if you are gentle with yourself.)

In hindsight, I should have been stretching immediately after surgery. I know that many before and after me have found their own methods, but here’s my “wish” list:

1 – trail fingers on cheek
2 – pull cheeks together with mouth open
3 – push bottom of nose up. (like a pig – very attractive)
4 – Press between eye and nose
5 – massage cheek vertically and horizontally.
6 – pinch along jawline

I was told somewhere that a stretch doesn’t count if not held for 30 seconds and have strived to honor that minimum. I believe it does help your body parts relax and release into the stretch.
If a spot on my face hurts I hold that position until it stops hurting. I don’t know how to describe this so let me know if you’ve experienced it. After holding a painful spot (spasm) there is almost an instant – very short – where it hurts amore than then releases. It’s almost like the muscle is making one last attempt to hang on before giving up.

If you’ve had a Charlie horse – or cramp – in your leg, you know it hurts. Did you know that a facial muscle spasm is the same? Your leg muscles are connected to bone, so the pain is immediate and intense. You immediately stand to release it and it typically releases and feels better.

Facial muscles are not attached to bone, so we don’t have the same intense pain. The down side is that we then aren’t aware of the cramping and think its paralysis. Since you can’t stand to release,  you must turn to other methods.

I continue to work with my face. To me, it still looks strange. Partly because I’m not 21 anymore (grin). But if I follow my routine, it does make a difference in looks and comfort.

I know I’m not alone in this journey…

Pictures that may help are below.  PLEASE NOTE that if your face is really tight you will say this is impossible. However, with continued stretching, you will be able to.






This is “the lip” before stretching

This is “the lip” after stretching. I am able to close my lips.



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

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

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

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

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

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

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

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

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

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

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

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

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.




SURVIVAL of Holiday Festivities – The Acoustic Neuroma World

Hi everybody!  I’m here, just haven’t had anything to share for awhile.  However, that changed with the season. For some, this will be the first holiday since a craniotomy or radiation. Or perhaps the first season of watch and wait after finally learning the source of symptoms. I thought I’d share my personal tips for survival.

Holidays are a challenge for those of us who have: (check those that apply)

– Head hurts (no further explanation needed)
– Tinnitus (loud, not just ringing, but buzzing, radio station sounds, ringing that gets worse in noisy settings)
– Single-sided deafness (doesn’t just cut hearing in half but confuses brain signals which amplifies background and side noises while ignoring voices that are right in front)
– Full or partial facial paralysis (making eye dry and/or self-conscious about smiling or eating)

PRIOR to Festivities, if possible:

– Take a nap
– Pack eye drops & tissue
– Pack as much humor as you can
– Think about packing one earplug
– Pack pain medication

DURING – Once you are “there”, wherever that might be, consider the following:

– Be calm. No need to scurry or move. Keep your head calm.
– Find the most comfortable chair (one high enough to have a headrest is heaven).
– Sit as far from speakers as possible.
– If possible set with your deaf ear toward a wall so you won’t have to strain your neck to hear (which may make your head worse) — and you won’t inadvertently miss someone approaching you and talking with you being aware. “What?” being our too familiar response to that jolt of awareness. (ears being on the side of the head doesn’t help single sided deafness, but that’s another discussion)
– Smile with your eyes. Sparkly eyes pull the viewers eye away from the mouth.
– Don’t stress about not hearing. Seriously, don’t get stressed.
– People watch – really study people around the room. It’s fun to watch mannerisms. I saw a play in a foreign language once so hearing didn’t matter – I got the story through physical movements of the cast)
– Focus on what you have — not what you’ve lost. Perspective is a good thing. Loss is real, but only living can bring joy.
– Once in a while close your eyes. Inhale, exhale and identify holiday smells.
– Focus your hearing on laughter and joy.
– Take mental snapshots. (Maybe phone pics too) but the idea of a deliberate mental snapshot is more likely to be saved in your memory for later retrieval (see below for your first opportunity)
– Laugh a bit.
– Take a walk or step outside for some air and silence (depending on weather where you are – here in Michigan you may freeze in place)
– Drink a lot – of water (alcohol at a minimum as you know your ability to handle, but it usually doesn’t help any of our issues)

AFTER – Once you’ve survived and gotten through a night of loud noises in your head, ponder these ideas if you can:

– Plan for morning after hangover and if possible stay in bed.
– Accept this opportunity to be still and rest
– Close your eyes and think past head pain to go through your mental snapshots. (see above). Remember the funny, the adorable, the cringe worthy. . .
– Go for a walk. Sometimes I have to start really slow, but the rhythm of walking seems to be calming to the head and the relative quietness of outdoors (if possible) are calming.
– Drink a lot of water.

I’m sure many warriors have other ideas for surviving, but here are a few of mine.

Happy Holidays!

Journey from Hopeless to Hope

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At times, I feel hopeless. Does acknowledging disappointment mean that I’ve given up?  Does it mean I’m a realist or a defeatist? When dealing with life as it is presented, is there a recommended ratio of hope to realism? Of optimism to acceptance? For me, I’ve found that changing expectations allows for an increase in hope that leads in new and realistic directions.

Hope is a feeling of expectation and desire for something to happen. It can be a short term hope – “I hope the weather is good,” or a long term hope – “I hope my chronic pain goes away.” Hope for things we know are not possible in this broken world can bring depression, which brings isolation and fatigue. It leads to hopelessness.

To be hopeless is to feel despair and disappointment that something hasn’t happened: an emotion frequently labeled pessimistic or defeatist. When our bodies fail, should we hope?  Or cope? I hate the word cope. I know that hating a simple word is rather severe.  However, I’ve heard the word cope too many times while living with head pain. I cheerfully and kiddingly correct anyone using the word cope by advising that adapting is the preferred word – for me. Coping is treading water while adapting is finding a way to move forward.

Futile is a word that pops up when I find myself hoping for things that are not probable. Yes, I know that God is capable of touching and healing. However, He is also capable of nurturing a deeper faith as we learn to accept and not fight.  Sometimes, I feel overwhelmed and torn between deliberate optimism and honest feelings that demand to be acknowledged.  I don’t know how to reconcile my public mask of “positive, strong, and resilient; pleasant, miserable person” with one who opens up vulnerably to connect with the people in my life.  I worry I’ll make people uncomfortable with something they can’t fix. It can’t be talked through.  My head pain can’t be overcome.  It demands perseverance when I don’t really want to be a strong, persevering person. What’s important to share?  What is rambling? I’ve always had a desire to be concise – fix it and move on. However, life has brought me unfixable challenges following brain surgery. At least so far. . .

At times, I can’t breathe.  I feel stifled by life.  I start in one direction and stall.  I start in another direction but stall again. Feeling stuck and immobilized, I can’t move.  Pain.  Constant pain.  Recurring pain.  Exhausting pain.  Inescapable pain.  Pain that doctors have given up on but I live with every day, in every moment.

Given the hopelessness and futility of wishing for life to be different, I still feel surges of hope urging me forward.  I see little – and big – miracles in life that bring joy. I experience things that make me want to get up for another day.

Despite being deaf in one ear, the other one delights in the song of my grandsons’ laughter. They’re just too darn cute.  To hear them say “Grandma” melts my heart, and I have to suppress laughter at their young declarations of independence, “Don’t want to!”.

Although my vision is far from perfect due to genetically poor vision, a dry eye from facial paralysis and skewed vision from nerve damage, I love to take in our world’s vast horizon with spectacular sunrises and sunsets. I see beauty in nature that allows me to forget my head pain for a moment. The world that challenges me also calms me.

I love the feel of working with melted wax to create encaustic paintings. I lose myself as I focus on getting a detail right. I smell the heated wax and feel stickiness as the wax cools and takes shape.  Sometimes smooth, and other times textured by objects that I embed in the wax – all to create unique pictures.

Writing provides a way to express what I’m living in a way that connects with other hurting people. When I take a break from writing, which I need to do at times, I always feel liberated when words start to flow again.  I find myself smiling, even if crooked, at the feedback that I helped even one person’s day.

Each of these respite diverts my focus bringing me back to experiencing joy. I feel gently led from hopelessness to hope.  I become filled with hope for living and finding a way through the brambles of life.

Community Service Announcement

If you’re getting this in your email that means that you signed up to receive updates on my blog, SmilingAgainBook.com.

First, thank you.

Second, I also blog at www.sallystap.com about photography, encaustic art, and life.  If you want to get updates on that blog also, please visit and subscribe to that site also – if you haven’t already.

I won’t bug you again but wanted to make sure you are receiving my updates if interested.

Have a great day!

Acoustic Neuroma – Depression and Timelines


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

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

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

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

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

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

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

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


yippeeI’ve gotten great feedback on my blog and have put together a kindle book containing many of my posts, categorized by topic – such as diagnosis, single-sided deafness, eye care, etc.

It’s all in one place as a resource for anyone who’s struggling with AN recovery or wants to better understand our journey.


Disability and the Stages of Grief


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.


  • 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.