Tag Archives: recovery

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.

 

 

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, 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.

Acoustic Neuroma Lessons – Eye Health #2

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Initial Treatment

In the hospital immediately following surgery, nurses taped a plastic bubble over my eye, providing a greenhouse effect.  Moisture built up in the bubble and kept my eye from drying out.  They also put lubricant in my eye that was a messy gel that liquefied and coated my eye.

The surgeon suggested putting a gold weight in, which I learned was actually titanium.  Having it sewn into my eyelid was good news because I had learned that a small weight would help the lid close more effectively.  The bad news is that you don’t get a gold weight if your face movement will return quickly.  It was a reminder of the long road ahead.

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Different samples were taped to my eyelid to get the correct weight – just enough to close my eye but not too heavy or I wouldn’t be able to open it. After going back and forth, a decision was made. The appropriate weight was heavier than ideal but necessary due to the extent of my paralysis. The weight had links in it like a watch so it would curve with my eyelid. (the picture shows the size, a little over a half-inch.)

Having the platinum weight sewn into my eyelid was a short procedure done while awake with local anesthetic.  Well, short according to the doctors.  It felt like the longest 40 minutes of my life.  It was very strange to have someone cut into my eyelid and insert a foreign object.  Then they stitched me up and sent me back to my room. My procedure was done while I was still in the hospital, but frequently they are added several weeks or months later.

I continued to use the bubble only at night and then with time I was able to only use nighttime gel.  Some doctors recommend scotch taping the eye shut or the use of an eye patch.  My doctor didn’t want me to do those things as he felt that I could scratch my cornea.  As with anything in medicine there are different opinions on treatment and its whatever a doctor and patient agree to. Mine preferred bubbles.

I’m not very knowledgeable about other options but I’ll list them for info.  Googling any of them will provide more detail.

– A procedure called a Tarsorrhaphy partially sews the eyelids partially closed until movement returns.

– Eyelid Palpebral Spring surgery is another option, which assists with blinking.

– Lateral Canthoplasty is a procedure done by shortening the lower eyelid to keep the lower eyelid from falling from the eye.

Anyway, back to my journey. I now had a black eye to add to my existing appearance issues – a row of 29 staples behind my ear from brain surgery and a motionless right face. I’ll never forget the self-consciousness as I was wheeled out of the hospital and crawled into my waiting car. I couldn’t believe what I was living but the pain reminded me that I was indeed alive.

In Part Three I’ll talk about recovery and how things have changed — or not — over time.

Note: Pictured above is a NitEye Dry Eye Comforter Eye Bandage. They aren’t on google but can be found here: NitEye

Caregiver Tip – Time is the Ultimate Gift

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

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

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

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

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

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

Brain Surgery – Recovery takes time

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

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

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

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

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

Traumatic Brain Injury – Invisible Disability

 

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

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

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

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

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

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

 

Polar Vortex and Acoustic Neuroma? Do I give up yet?

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I’ve always found it difficult to navigate the tricky line between giving up and pushing on. I do know and will even acknowledge there is a time for both. I learned today what a polar vortex and acoustic neuroma brain tumor have in common.

Today I had to be in Grand Rapids, about an hour north, for a doctor’s appointment. The news said to stay off the roads. Google Maps said traffic was fine. My look out the window said “so-so.” My head complained. I had to make a decision once the appropriate departure time came – after calculating travel time with extra bad weather minutes added in. Always one to push things to the limit, I headed out. 

It was blowing with spots of snow as I headed out on the north-south highway. I could see the wind gusts whirling across the road because each picked up stray snow from banks along the side of the road. I drove carefully — my hands at ten o’clock and two o’clock and the speedometer below the speed limit. I always ensured a good bit of distance between me and other cars because I know that, as in life, it isn’t always our direct action that brings accidents, drama, and unwanted events.

Suddenly, though not surprisingly, traffic stopped ahead of me. We all crept along, blinking tail-lights for those behind us as a warning to slow down. When we reached an exit, some very yellow firemen had the road blocked off with their very green emergency vehicle with red flashing lights. We were all forced to exit the highway. It was shut down.

I didn’t have a option to continue on the same path.  I also didn’t have an option to just stop and give up.  I DID have a choice to to go north or south once I was off the highway.  Should I head home or keep moving, via an alternate route, to my appointment?  I had input.  I called Kayla (hands free) and asked her to check the map. Her input?  “Mom, just go home.” I called the doctor’s office to tell them that I didn’t think I could make it. His input was that he didn’t see anything on the internet map, but I could change my appointment. It was up to me. I could ask God for His direction, but it was me who had to turn right or left. I had to turn when I reached a T in the road (or annoy a lot of cars behind me).

For once in my life, I gave up. I reluctantly, but very carefully headed south. However, I was now on a country road and found myself in a complete white-out. I turned on my emergency flashers and carefully watched ahead as well as behind for other vehicles. Even though I had acknowledged that my day had changed, the battle wasn’t over.

Eventually, I found myself out of the snow and safely home. I still wasn’t happy about relinquishing control to mother nature, but it was clear that I made the right decision when I heard that the swirling storm had closed multiple roads. I accepted getting safely home to rest up and reschedule for another day.  I am hearing whistling, violent wind and watching trees wiggle and bend even as I type this.

Acoustic Neuroma brain tumors are like that. We don’t ask for the storm that they bring. We try to keep going. Each person encounter’s their own version of the storm. Someone was in a vehicle ahead of me in the accident that closed the highway. They were “worse off than me.” Someone took the detour and kept going. They eventually reached their destination – or encountered more delays. It may have only been a bump in the road for them. Those folks were “better off than me.” However, everyone on the road today was effected by the storm. Everyone in the Acoustic Neuroma world, including family members of AN recipients, is effected by the storm.

I’d never heard of a polar vortex until this winter. I had never heard of an Acoustic Neuroma before learning that one was camped out in my head. It didn’t mean they didn’t exist. It only means that they hadn’t been drawn to my attention on my journey.  

When do we give up on finding treatment for head pain, or dry eye, or facial paralysis issues? How do we adjust to and find ourselves apologizing for our single-sided deafness in noisy settings? When do we turn around and go home for a while? When do we head out again on our life’s journey? I don’t have a precise answer – only that we have to keep moving forward at whatever pace is right for us individually.

Lessons Learned – Brain Surgery is a Unique Experience

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Each body, tumor, and outcome is unique. Each scar following surgery is different. Some are a lovely “C” circling the ear. Some leave a creative “S” trailing down into the neck. Mine is a cornered two sided triangle, which I thought was appropriate for my scientific background. Some have a scar above the ear, or none if the surgeons went into the ear directly. It’s all in the surgical approach as well as the approach of the surgeon.  I recall the residents talking about incisions and how they are the recognizable signature of surgeons.

As with our scars – or lack of scars – each aspect of our experiences are different. We like to say that we are as unique as snowflakes.

Some people skate through the experience of Acoustic Neuroma diagnosis and treatment. It is a stop on their journey rather than a radical branch in life’s road. Others are debilitated and their life is changed forever. Many of those who were changed band together in support groups to share and encourage. I have seen a unique strength and humor in each person, whether in the status of Watch-and-wait, post-radiation, or post-surgery.

Symptoms prior to an AN diagnosis vary a lot. I found out that I had a brain tumor growing in my head for ten to fifteen years. It had grown to the size of a ping pong ball, just short of 3 cm. I had no bothersome symptoms, although in hindsight I recognized signs.

For example, my facial nerve was flattened like a ribbon across the growing tumor, and I started to experience mysterious symptoms. The size of my eyes was different in pictures. Very odd, but how would one link that to a brain tumor?  I had a strange sensation on my face. My right eye was watering excessively. I felt like I was drooling on one side, but felt nothing when I would check the corner of my mouth.

Balance is a common issue that can lead to a diagnosis when one finds them self dizzy and possible falling. However, for me, the tumor grew slowly and my left side was able to take over my body’s balance issues. I have had some issues after surgery, but the doctors were surprised that I had not experienced issues prior given the tumor size.

Hearing loss and tinnitus is what brought me to the doctor, while for some it isn’t an issue. It depends on how much of the tumor is in the skull pushing on the brain and brain-stem versus how much is growing into the ear canal. I was expecting a “nothing can be done about it” diagnosis of aging, but had learned of Meniere’s Disease and had heard of issues with inner-ear bones. I was shocked to hear brain tumor.

And then there’s the journey after diagnosis and treatment. I’ll continue to address each of those areas as they each warrant a complete post.

Unique is the word of the day.  That is what brings each of our stories into color. . .