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

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.

Announcing!

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

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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.

 

 

What’s In a Smile?

cheesecake

Recently, I was dining in a buffet setting. People were coming and going between all the food options. The dessert table was particularly busy. As I approached, I saw what appeared to be a bit of a commotion. Not a fight or a brawl. What I saw was joy. I experienced a man living in the moment.

An employee serving cheesecake had facial palsy that immobilized one side of his face. Something that I would not have noticed or understood in the past. However, knowing what I know about living without the full use of facial muscle, I tuned into the picture before me.

I was captivated because he showed no sign of being self-conscious. He was not feeling sorry for himself. His infectious smile took over his face. His eyes, laugh, and broad “half” smile were pulling customers in.

On each side of him, servers dished up other desserts. The servers were pleasant (and the desserts too), but I don’t remember them as individuals. They weren’t pulling people in with a contagious enthusiasm for one particular dessert. Their smiles paled in comparison to his.

People responded to this one man. They chose his dessert over others – not for a lack of choices but due to his inviting nature. He was delighted to interact with each person and proudly dished out what I would define as oversized portions. It wasn’t about whatever he had gone through to become facially paralyzed. It was about the moment he lived in and the joy of interaction.

I won’t soon forget the power of one man’s smile.

Sometimes we need to use words


I will be the first person to raise my hand and plead guilty, so please don’t picture me with my nose in the air touting greatness. Instead, picture me clicking “Like” to a social media post instead of taking the time to say a few words. (That is, ‘like’ or ‘+1” or ‘*’.depending on the social media site)

Social media is a powerful tool in our world today. Because of it, we are connected to more people than ever. We connect with old friends, delighted to catch up after sometimes many years. It’s a wonderful way to share family news across the miles. Other times we connect with people who are also experiencing a life event. Topics vary tremendously, including beliefs, travel, parenthood, hobbies, or shared life stages. Other events are traumatic to ourselves and close ones like illness, tragedy, or financial needs. We can now communicate in a truly global way with many despite the fact that we are sitting in a chair, possibly alone in our homes.

Myself — I have connections with friends, family, casual acquaintances. We all have things to share and laugh about. A steady stream of videos fills my feed of crazy and cute. Thought provoking posts help me see things from varying perspectives. I’ve made friends in faraway places and feel like we live next door.

However, what I do find interesting, and a bit disappointing (see finger pointing at myself also), is when people pour their hearts out in a post that we often read, click acknowledgement of, and move to the next post. Especially in closed groups, individuals are reaching out to others who are experiencing things that nobody in their direct daily life can understand. We, fellow members of those groups, are sometimes the only ones who can grasp the severity of what that individual is living – today. Often, we don’t take the opportunity to share our words to let them know they aren’t alone in this world. We don’t take the time to carefully craft a response that really shows that we understand, have answers, or can provide encouragement.

Now, not to be too hard on myself and the rest of us – it does take all of us (no, I’m not going to say a village.)  There are days when I don’t login to any of my social media accounts. I disappear for weeks at a time and am not one to post that I just made toast (although I did once post that I made hot chocolate – lol). Sometimes I browse my news feeds just as a nurse calls me into an appointment, not allowing for a wordy response. I cannot, nor can anyone, take the responsibility of always commenting, but we can do our part.

In the acoustic neuroma world, there are new diagnoses every day. I recognize, and clearly remember, the specific shocked state that one goes into when hearing a brain tumor diagnosis. We want to know that we are the exception to the assumption that a brain tumor changes you for life, or ends our long thought out life plans. We learn that it does change everyone, at least emotionally, while retaining goodness and joy regardless of our physical outcome. There is laughter and camaraderie despite being changed physically – some more than others. We do not have all the answers, but we can be there for each other. We can encourage. We can speak and share.

So, in the season of beginnings, let’s think about actually taking the time to let others know that we have heard them. I thank those who have encouraged and commented as I’ve written this blog. It is that encouragement that keeps me writing. Thank you.