Thanks For Following HOPE TBI

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Hurtin’ for Certain

pain

 

Events are typically considered traumatic when they threaten the life or bodily integrity of the individual who experiences them. After experiencing a trauma people tend to develop certain predictable reactions.   Examples are the following:

  • Persistent and unwanted thoughts, memories, or dreams of the event

[while I have no memory of the wreck I was in, since I started dreaming again, I dream of being in wrecks, of my kids or family members dying in wrecks, and am consumed with many unwanted thoughts and various levels of anxiety when in a vehicle that varies from day to day.  On my worst days this creates a lot of fear and anxiety]

  • Heightened physiological arousal, such as tension, nervousness, irritability, startling easily, poor concentration, or poor sleep

[I can attest to all of this. This is one of the largest part of my recovery that I continue to work on and that gives me the most challenging hurdles to overcome and deal with]

  • Avoidance of places or things or events that are reminiscent of the traumatic event

[ I can’t say that all of this necessarily applies to me. I do like to avoid driving in bad weather, as it makes me quite nervous and fearful.  Stop and go traffic heightens my traffic anxiousness, and I have a lot of other challenges while riding as a passenger now…especially]

So, that being said, the wreck I was in was absolutely a traumatic experience.

I always felt I had a high pain tolerance before the wreck. I may have, I did give birth twice after all. Yet now I believe I was mistaken.  Childbirth Labor does not compare to multiple fractures and the chronic pain that never goes away from multi-system traumas.  At least with childbirth, eventually the pain stops and repeating that process is a choice.

My tolerance for pain has grown ten-fold.  What I would have gone to the hospital for before, I wouldn’t even blink at for a Tylenol now.  That being said, I have sunk into a new acceptance of this chronic pain filled body I live in now.  I accept it as my new normal.  My new cloak of pain I have become accustomed to.  Chronic pain that some days holds me hostage from accomplishing what I desire.  That is, until it raises its ugly head to show me it can still get worse with white hot nerve pain, muscle spasms, and a debilitating wave of continual sharp anchors that drag me down.

I have always had an intuitive relationship with my body.  A polytrauma screws all that intuitiveness up.  Some days it’s hard to know what is up or down or sideways with where that chronic pain is located.  Some days I can point right to its origin. Other times it feels like it is all over me and I can barely walk or pick up my feet.

I have been hurting a lot since I got off of the pain pills on my own.  My back aches, my feet intermittently get pins and needles.  My right knee doesn’t want to cooperate with that left foot that tends to drag by the end of the day.  My neck feels puffy, tight, and just hurts and acts like it has a little storm in there shooting electric lightening bolts down my arm to my fingers and up to my ear now and again.  My ribs that are plated, like to play musical ribs for the spasms and often include the right lung and back in their spasm just for fun.  My head throbs and I feel such intense exhaustion. Most days, it is a struggle to just get moving. Add that on top of the random high pitched dog whistle sound in my ear/head at inconsistent times.  Makes things quite interesting.

I am driving more now too…so that means no muscle relaxers or pain medication while on the road or doing errands. I am strictly diligent about this.  Of course, the trade-off  to taking on more responsibility is being more irritable, hurting more,  having more intense muscle spasms, shooting nerve pain, and dragging myself around literally days and weeks at a time without being able to get on top of the pain and discomfort.

joint pain

I am a whining mess as I type this as I so get tired of hurting and aching.  Here is the irony though.  I love being alive so much, and value life so much, that the value of living is worth more than the miserable pain that continues to come in waves.

I got news for ya’ ….Chronic pain threatens body integrity as well.  Any new flares that are not the new normal are seriously emotionally and physically exacerbating.  It’s like “seriously how much must I take”.  So the trauma continues and I remain….Hurtin’ for certain.

Emotional Lability – Web Page Update

Check out our latest Website Page – updated with additional relevant information.
You can find this under the “Rehabilitation Journey” Tab.  Then click the dropdown for “Emotional Lability”.
or go directly to page here:  Pseudobulbar Affect – Emotional Lability

 

 

 

Please consider leaving a comment under the article on our web page after you have read it.  We like to hear your feedback about what we are posting.  Thanks.

7 Mysteries of Polytrauma Exposed

 

mysteriesbrain

  1. Hermitdom – In the beginning, not only did I NOT want to leave my house to venture out into the outside world, I often was absolutely content to remain in my bedroom where I knew what to expect and it was somewhat controlled and felt safe and comfortable. This was my safe space.  Safe from the bright sunlight, safe from too many people talking at once, safe from the general noise of the world outside the room, safe from traffic, safe from having to explain what was wrong with me, safe from having my daily emotional breakdowns in front of others, safe from trying to stay awake, safe from being looked on with judgement or pity, safe from healthcare providers appointments, safe from additional pain from moving broken limbs across the room and down the stairs to face the reality I did not seem to fit in any more.anxiety

As time progressed, as my healing progressed, as I was forced out of the room due to sheer necessity to survive my pain, to attend numerous therapies and medical appointments, and to be a parent – I began to adjust to new tolerances.  I also learned rather quickly most of what triggers to avoid so I didn’t end up in a full blown panic and puking my guts up from the dizziness, headaches, and a bouncy massively overstimulating environment.

Getting out of the house is a solid accomplishment.  There is a lot of planning that goes into getting out and about.  There are things to consider that I took for granted before the Polytrauma.  Checklists are my friend.  If I deviate from this process we have established, things do not go well at all.

Some days I do better than others.  I find I am able to be out longer and more often than even a year ago.  However, I recognize that I do not have the same comfort level I used to before the polytrauma and I value getting back home as soon as possible.  Some days I still have to force myself to leave my room or go downstairs to the main living area of our home. Some days I feel ready to face the world, get outside, something happens that I didn’t expect and NOPE…back home I go.

Trips away from home, the longer the day, the busier the activity, the longer the recovery time afterwards.  A one day trip could take several days to recover from.   A day of appointments could take a week to level out from again.  If you have back to back appointments or requirements, it becomes a vicious cycle of feeling overwhelmed, incompetent, and beyond exhausted – just weary and pummeled.

So planning in advance, if possible, become a requirement.  Having someone help you organize your schedule, your time frames, your goals is imperative to attaining those small victories.

Having things to help you cope in moments you can’t be home is imperative.

  1. Brain Time – I created this term with my family. I wanted desperately to spend time with my kids, my husband, our friends, and people in general.  I wanted desperately for things at home to be normal.  Since the polytrauma I would feel emotionally and mentally….well…..flooded.  Like I was standing in the ocean and wave after wave was hitting me in the face and taking my breath away.  In my case though, sometimes their voices all at once, their walking, their questions, their playing, their presence is enough to overwhelm me.  It is like there are too many sounds to sort out or too many thoughts to try and think at once.  I would become irritable, frustrated, nauseas, and when I wanted it to stop…. it literally had to stop NOW, or I would puke, have an emotional crying meltdown, or just freak out.  So we came to an agreement that if I said “Brain Time”  all things ceased no matter where we were.

Reset-ButtonIn the beginning  I was at the point when I couldn’t easily reset myself, so I would say “BRAIN TIME”, go in my room (or they would have to leave my room), and I would stay there until things settled down in my head.  No interruptions, no calls,  no questions, door shut. Sometimes this was moments, sometimes minutes, often hours, or occasionally days.  I needed absolute silence, a dark room, a warm heavy blanket and to lay down perfectly still.  I slept a TON.

As time has passed and I am now three and a half years out from my trauma, I still call BRAIN TIME now and again, yet it is less often that it used to be and I have employed other coping mechanisms to help me reset myself.

However, once my brain has decided it has had enough for that moment, or that day. It’s like it’s done “now” and not even I can control the shut down process.  I am learning to pace myself still and manage this more effectively.  This does not make for a great social life though, I will say that.

  1. Directional Instability – Okay I gotta say I have always been the type of person to have a pretty decent sense of direction. I never had a problem getting “lost” when I went into a building, when I drove, or when I was walking somewhere.  I was always quite proud of this “inner compass” and it served me well in marching band when I was a teenager, in college and in my work life, when driving an emergency vehicle, when locating items others seemed to struggle finding, and when driving my personal vehicle.

After the polytrauma, it was like someone took that inner compass and smashed it. When I tried to lift my head, the room would spin like just got off a tilt-a-whirl on the Gravitron from a carnival.  When they would sit me (and eventually after I sat up on my own) I would be so enormously dizzy that sometimes that labyrinth of puking was unavoidable.  No to mention the throbbing headaches that seemed to be everywhere and made my forehead feel like it was 50lbs all by itself pulling me forward.  The back of my neck ached and I would often have a “belly ache in my neck” if that makes any sense. Looking up and left exacerbated EVERYTHING and so I learned to avoid looking that way.

redTwo and a half years after the trauma I started to return to driving. I would learn my inner compass was missing/broken.  I was horrified to find myself LOST after taking my kids to school.  In fact, I couldn’t remember how to get there….a trip I had made hundreds of times before.  I used a GPS because it was like I had never been there before.  Now THAT made me feel coo-koo….I didn’t understand.  Then I got lost heading home.  I literally ended up 20 minutes in the opposite direction because I couldn’t remember what to do or how to get where I needed.  GPS became an absolute crutch.  As time has gone on, I have gotten better about figuring out my routes.  Often times I could think of where I needed to go…yet applying it to real life outside my head was a different reality entirely.

It is a horrific and scary feeling to feel LOST.  I called my husband in tears a few times telling him I didn’t know where I was or how to get home (when phone died and I didn’t have access to GPS).  Most times he would answer the phone, sometimes  he didn’t hear it and I would be out there in a full blown panic.  I would feel scared and the noise around me seemed to get magnified to a level that felt like it was trying to kill me.  I could feel myself slipping into this dark space of isolation and I literally couldn’t think of how to fix it.  I do not remember how I made it home in those elevated panic times.  What I do remember is deciding I couldn’t drive yet and that I didn’t feel safe outside of my house, let alone my room.  It has been a massive process to get back to driving again.

Now I am driving more often and the short local routes I do really well at.  If I forget I just turn on the GPS.  We purchased a charger for the vehicle so I never have to worry about my phone dying (unless the bill doesn’t get paid – GPS doesn’t work then by the way).  So the phone is as important as the mortgage for me as far as financial priorities.

Buildings I have been to a lot I still get turned around in since my Trauma.  Oddly enough sometimes I get lost in my own neighborhood or kids’ schools.  If I survive an outing without getting lost, having a panic attack, or struggling to survive the experience – I consider that a WIN!

  1. Peat and Repeat Languaging – the way I communicated became annoying and complicated.  I not only would have to read numerous times a sentence or a paragraph to catch it all, I would also have to listen to a voicemail like 4-5 times to get it all because remembering the number or message seemed suddenly impossible.  When people would talk to me I had to have them look at me to hear them.  I found myself reading lips to understand what I was hearing, or thought I was hearing. Speech Bubble Indicates Speak Dialogue And Speaking If they turned their backs to me I would ask them to turn around and repeat what they said.  Some folks are super accommodating, some act put out by this.  Often times folks think you aren’t interested in listening or you do not care about what they said.  It wasn’t that, I just couldn’t process what they were saying.  Sometimes the words didn’t make sense. It’s like I was listening to a foreign language sometimes.  Sometimes it was like I could see their mouth moving, hear noise coming out, yet couldn’t make out the words.  This was maddening.   Oh!  if I was doing something and all my focus was on it (like typing or reading), forget about me hearing you..it just didn’t happen.

This has gotten better for me in a lot of ways through my rehabilitation journey,  not better in other ways – however, I keep learning ways to cope with it despite its abounding annoyance.  I am a lot better about being vocal about it though with who I am speaking to now.  Once you get used to functioning at a certain level it just becomes your new normal and you accept it as what is.

  1. Where’s the Word?… Doh! – Okay, I have always been a talker. I started talking early as a baby and I haven’t quit since.  I love words, their meanings, and expressing myself in a creative fashion.  I won spelling bees in my younger years and have always been a semanticist and quite loquacious.

However after the trauma, that seemed to also have changed.  I couldn’t remember how to spell basic words.  I find myself misspelling things often and missing the same specific letters when I type. I would look at say……a couch.  I could see the word in my head, I knew what it was, yet all I could get to come out my mouth was “that thing there that we sit on”.  I have become accustomed to calling things differently than what I am thinking now or what they actually are. Sometimes I come up with some pretty creative descriptions.

  1. Bon Appetit No More – Food has been my friend for years. My family has always celebrated with food, rewarded with food, and used meal times as a social gathering time to express our love while being able to share something we all enjoyed….cooking, talking, and spending time together.  I could always tell when I was hungry, when I was full, and when I was snacky.

 

bonAfter the polytrauma I seemed to lose the ability to feel hunger or fullness.  For some bizarre and I am sure possibly scientific reason I lost my appetite or desire for food in general.  No more interests, no more favorites, no more “cravings”, and no more enjoying the things I used to enjoy before.  My sense of taste and smell had changed.  Some of the things I enjoyed before now repulsed me.  Smelling certain types of food cooking was enough to turn me “green” (sick). Just looking at certain types of food was repulsive. The connection with food emotionally seemed to go on vacation.  In fact, if I wasn’t brought my meals in those early months and sometimes  still…I just wouldn’t eat because I would just forget to eat or have no interest in it.

As time has progressed, every once in a while I go from no appetite to suddenly HANGRY (angry rage filled hunger – almost a desperate hunger); HANGRY is rare though.   More often than not, I forget to eat or have no interest in eating.

I do like some textures or flavors of some things that I never liked before.  My family and I equally find this as quite bizarre.

  1. What Temperature Is it Anyway? I remember a few specific things during my recovery process that stood out and I still wrestle with. Chronic pain I have written about in other Blog posts and will probably write about again….however what I am referring to here now is TEMPERATURE.  More specifically FREEZING MY TUCHUS OFF!!!  I was always cold.  I couldn’t get warm, not even in the Summer months.  People would be sweating and I would be freezing and covered up with  my electric blanket and shaking from being so cold.  I gotta tell you that being so cold that you are shaking and having multiple fractures does not a good combination make!

jamaprintI have come to realize that my thyroid-pituitary-hypothalmus axis was way off.  My hormones were all over the place and apparently I rattled that temperature control  center of my brain pretty good.

I still have some great hurdles to overcome when controlling my comfort regarding temperature.  At least now I can feel warmth eventually and not be as  cold.  Sometimes, I even get hot flashes occasionally and naked isn’t naked enough to cool down.  More often than not though, I still get cold.  Brrrrr’kin is what the kids call it.

So what temperature is it anyway?  I am probably not the most reliable person to                ask.  You might want to check outside…..then let me know.

 

There are many more nuances that go along with recovering from a polytrauma and these “7 exposed mysteries” are not an exhaustive list, not even for my experiences.

However, they are some of the things that are not necessarily visible changes to anyone who isn’t experiencing them directly and I felt they were worth mentioning.  If you are experiencing these things, you are not alone.  What you are experiencing is real.

Hopefully, understanding that this is now your new normal will help you accept yourself as you evolve towards your plateau in search for treatment and healing.

 

 

Michigan No-Fault Insurance – Is It Worth the Fight?

The answer to that questions is quite simple for me.  it is a resounding and emphatic YES!!!

I am so eternally grateful for the No-Fault system. I sustained a Polytrauma which included multiple orthopedic fractures (5 in my spine alone, ribs, wrist, pelvis, scapula/shoulder, soft tissue injuries, nerve damage, and a traumatic brain injury).

Thanks to Auto No Fault I was able to have the necessary MULTIPLE xrays, CT Scans and lifesaving surgeries to help me survive. I had to go out of State to save the use of my arm due to a shattered scapula as we have no Trauma surgeons in Michigan who were trained to do that repair. Michigan No Fault made it possible for me not to lose all of the function in my right arm. My whole scapula and shoulder had to be rebuilt.

Medicaid and Medicare would NOT have covered this. We would have been stuck in months of pre-authorizations and appeals and I would have died.

I would have left behind my husband (who is also my provider so I could remain at home and not in a nursing home) 6 children, a mother, a brother, a
nephew, and other family. I would have lost the ability to advocate for others and to function at the level I currently function at.

My story would have ended tragically. My story, while yes, tragic and traumatic continues to be HOPEFUL due to Michigan Auto No Fault.

I WILL need surgeries in the future. It isnt IF….its WHEN. Auto No Fault provides me with the medical security to still be here for my children, and hopefully some day….their children.

Please, I implore all voting members to vote

NO ON HB5013

YES on the Fair and Affordable No Fault Reform Plan

You are literally investing in Michigan’s future and survival by voting to save lives and protect the communities you are pledged and voted in by your constituents to serve.

What do you want your legacy to be as a politician, as a fellow human being leaving their mark on this world???

Someone who saved lives and cuts costs by holding insurance companies accountable, or someone who sentenced thousands of men, women, and children to death and financial ruin?

You can be the implement of positive change. You can be a hero. You can be a HOPE’ster.

NO ON HB5013

YES on the Fair and Affordable No Fault Reform Plan

Thank you.

https://hopetbi.com/2017/05/29/be-a-hopester/

 

UPDATE: 11/2/2017

HB 5013 did not have enough votes to pass. This is great news for the whole State, but especially for the recipients of No-Fault benefits.

The Latest and Greatest

Check out our Updated “How You Can Help” page.

Don’t worry. This is not a fundraiser or request for funds page.

https://hopetbi.com/about-our-site/how-you-can-help/

Sound of Silence

Much like the Simon and Garfunkel song…well, back to that in a minute.

Image result for sound of silence lyrics

So I have always been proud of my muti-tasking abilities throughout my life.  Being able to focus in many directions at once and deal with any level of noise without issues.  In fact, when I was much younger I used to go dancing and I loved bopping away and really enjoyed the techno beat of the music.  I used to be in marching band years ago, Jazz Band, Choir, Show Choir (kinda like Glee for those who have never heard of it) and let me tell you….you just get used to moving, spinning, dancing, and lots of noise.  I have always been a lover of music in almost all forms and preferred to listen to music almost all the time.

I loved going to football games, Image result for marching band competitionsporting events, and Pep Rally’s are an amazing memory.  As I grew into an older adult some of my music interests changed, yet I still held on to that love of music (which my parents would have probably argued on some days was noise to them).  When I worked in Emergency Medicine, I love the sound of the sirens, the pager going off, the squelch on the CB or radios, the multiple directions and decisions that had to be made to save a life.  I knew by their sounds whether it was “go time” or not.

When I met my husband I loved that he played the guitar.  My dad used to play all the time and we were a musical family growing up and I was quite ecstatic that I didn’t lose that with marriage.  When I became a mother I loved the sounds of my children.  All their sounds. From that first cry, to their first words, to their first debate/argument (yes – abhorred and loved at the same time too).  I was pretty good about being able to sort and filter out what I wanted to hear and didn’t want to hear merely by choosing…then remembering to finish what it was I was working on (which seemed to be everything all at once).  I could talk to more than one kid at a time, answer the phone, stir the dinner I was cooking, with music playing in the background….though admittedly it was often more than one type of music from more than one kid at a time as they listened to their “stuff”.  I loved my jobs.  I loved working and the business of it all and the multiple directions needed.  I was always felt I flourished in tight deadline and crisis situations in the workplace.  A lot of times, admittedly – in my younger years, my colleagues found me to be a little “too happy and cheerful”.  I heard that a lot.  What can I say……I really loved doing whatever it was I was doing at that time.

Image result for Studio 28 theater

 

There was also nothing more spectacular than going to a movie theater with the whole family and listening to the loud blaring beginning of that giant picture on the screen with each thunderous sound from one scene to another.  Now that is relaxing!

That is…..until the wreck.

I came out of that wreck different in a lot of ways I still continue to discover.   Some things about my personality became enhanced, some disappeared altogether, some new things cropped up that I have been unable to explain.  Some things about my tolerance, patience, general mood, ability to withstand hearing things in the same way and do things in the same way changed dramatically.  The way I thought about things, processed things, felt things, literally EVERYTHING became like I was experiencing them for the first time……or even worse, not at all. I do not dance anymore.  I do not multi-task like I used to, and I do not hear like I used to.Image result for noise

I honestly could not stand noise in any form for a while.  Literally, nothing.  Just the sound of the nurse’s feet walking in the room and the scuffing of their shoes was overwhelming.  The door opening and closing, the beeping and whirring sound of the blood pressure cuff, the constant talking in the hallway, the toilet flushing, people always asking me questions I couldn’t understand or I would answer quickly in the hopes they would soon just be quiet.  My memories of the hospital are in and out.  I remember voices and feelings more than I remember faces, names, or the day to day stuff that went on.  I remember pain.  Lots of pain.  I was dizzy, head a constant headache, and nope….no music thank you.  I also noticed I had a problem with how horribly bright it was everywhere.  When they would turn down the lights it was delicious and relieving.  Even the red lights from the monitor would hurt my eyes.  Those little night lights built into the wall at hospitals….nope, not my friend.

Then I went home.  Things were so different.  The house looked different as we pulled in the driveway.  The sound of the van door shutting, the leaves blowing, the clunk of the wheelchair, the shushing of the adults to the kids as I made my way inside.  The days that followed brought lots of appointments and a constant assault on my head, my eyes,  and my ears.  On top of it all I could “hear” the crunching of my shattered scapula moving with each therapeutic effort.  I could hear a high pitch tone that never seemed to go away for the longest time.  It almost sounded like a dog whistle or a fine squealing.  It was awful.  I noticed that while I had this going on, it sounded kind of muffled at the same time and it became difficult for me to focus on words, sounds, and more than one noise, or more than one person talking at a time was enough to send me into tears.

As time passed I noticed it helped if I read Image result for reading lipspeople’s lips to understand what they were saying.  Sometimes still I will see lips moving, know they are talking, yet understand NOTHING. I have learned to ask for repetition a lot.  Sometimes I just act like I know what they said….nod….and smile.  I learned little tricks, like wearing earplugs, sunglasses, carrying a blanket to cover my head with, lots of those types of things to cocoon myself from the auditory assaults of whatever environment I was in.

Eventually it just became easier to be at home where it was supposed to be peaceful.  However, we are a big noisy family. So that was not to be for me.  My family tried….hard in fact, to keep things quiet.  It seemed unfair to them.  However I was grateful for their attempts to cater to my newfound love of absolute quiet.  My bedroom became my safe zone.

Time has passed. Things keep changing.  Some though remain the same. Things are a bit better now.  I can stand being in outside more often than not. I can handle the lights in the grocery store on most days.   I do notice that my intolerance for noise seems to increase along with my intolerance for light. I startle quite easily some days, not so much on others….which causes ridiculous amounts of anxiety which can trigger some really unique reactions.

Nowadays, I am listening to music more often.  I still am not able to listen to it every day and some days not at all as it is too much to process if I am doing something else….like ohhhh sayyyyy….driving!  Just this week I was travelling down the highway and it was nice out so I thought I would roll down my window.  Just the sound of that gush of wind was too much for my brain to handle. I couldn’t roll up the window fast enough.  Other days I can have it down without incident.

I notice that when I am feeling flooded or overwhelmedImage result for fatigue or in the throws of a very neuro fatiguing day or situation (driving can be very neuro fatiguing by the way) – just having the window down and the wind in my ear seems like it is TOO MUCH.  Those are the days I just cannot seem to wait to get home.

Now 3.5 years later here I am.  Hearing loss in my left ear due to the damage from the traumatic brain injury.  Progressing with my vision therapy which has helped in more ways than I can begin to mention here.  Still reading lips, and an overcast day is a breath of fresh air for my eyes as it is not so bright.  Though I try to avoid driving too much at night as there are more lights than I remember being aware of before….there are a few things that everyone who knows me well….knows for sure – talk to me one person at a time; one task at a time; if I didn’t answer you chances are I didn’t hear you; if I tell you I need quiet and I cannot take any more I really mean that; and if I am having a rough brain day and need that beautiful bit of immediate solitude….

Ah yes, where I started this post from; like the lines from that Simon and Garfunkel song …..”No one dare disturb the Sound of Silence”

Image result for dare disturb the sound of silence