LIVING WITH MENIERE’S
photo by A.E. Redeker
This is dedicated to the many thousands of people with Meniere’s and Tinnitus who hear more than they need to hear. To the families that do try to understand and gives them hope to go on day after day, and to those who help to heal the pain that comes from having this problem. To the people that keep searching for an answer. To the people that try to bring awareness to this disease to help find a cure for all. May God bless you!
By: Gloria S.Castor
Copyright©1997 Gloria S. Castor
When the night is dark and no one’s around
Why is my head so full of sound
As I lay down for a good nights sleep
I know this night will be a repeat
A hum, a roar and buzzing as well
To me a nightmare, a living hell
No way to stop the sounds I hear
For what I have they call “Meniere’s”
And sounds deep within my ears
I use to pray most all the time
For God to clear this head of mine
So many years have passed on by
And many days and nights I’d cry
But still the sounds lives in my head
At times you wish that you were dead
The Doctor’s give you pills to take
But most the time you lay awake
I pray to God my soul to take
Now I lay me down to sleep
But most the time I lay and weep
No one knows what it is like
Because I always look so right
I try to do the best I can
But most folks just don’t understand
Some can’t understand what they cannot see
And at times this causes pain for me
But I can’t give up, it’s my life you see
Now the early morning hours are here
And the sounds are here within my ears
But I will go and try to sleep
And pray my Lord my soul to keep
Maybe soon it will go away
Who knows? Is what the Doctor’s say
I’ll always thank the Lord above
For “He” understands and gives me love
I get my strength from up above
Only a person who lives with Meniere’s
Or Tinnitus, the pain, the fears and tears
Can really know of what I speak
And a cure for these people is what I seek.
Poet - Paul K. Smith
The possibility of vertigo is always here.
It is imbedded in my memory and my now.
When the attack comes I invite it closer
where I can embrace it and thereby defeat it.
It attacks my total self in a fruitless effort
to knock me down forever.
Through the vomit and the shit and the sticky sweat
and the tears I remain myself.
No mere disease is good enough to change me permanently.
I adapt as necessary and push and ram myself
through life as though I was dying and
had just a few more things to accomplish.
After this hell is gone and I have triumphed once again
I cannot help but smile.
—Paul K. Smith
Today I had a breakdown, and I don’t mean a flat tire
My heart and soul exploded, it was like it was on fire.
Suddenly my mind it whirled, my heart beat like a drum
Took me by surprise, where was this coming from.
My coping it just stopped, like broken hands of time
A numbness washed all over me, my body wasn’t mine
I was in the hands of something else, with a grip of solid steel
If it wasn’t for my breath, I would swear it wasn’t real.
Then I heard a voice speak softly and gently call my name
And another and another, whispering the same
They offered kindness and compassion, I could feel them all around
But me, I could not rise, I felt weighted to the ground.
Did you ever play that game at school of lifting another up
Where you take the feet and legs, and the head another cups
Usually it’s giggles, made for fun and just a game
But after today, I don’t see it quite the same.
There is a metaphor within that game, about sharing with another
The weight of all my sorrows and trusting my own brother
About surrendering my burdens to strength I cannot see
About knowing and accepting that others care for me.
— written by one who suffers
i hate you
‘i hate you…you cruel selfish bastard,’ she whispered, ‘you took my soul…my dreams.’ She is reminded of a man who once stole her innocence, trust, and childhood…but this bastard is not a man…it’s worse…a man you can fight…you can strike out and try to defend yourself…but this beast cannot be hurt, cannot be tamed…it is not tangible…it is…
She looks into the mirror and glares at the woman who stares back at her. Life and joy use to gleam from her dark eyes…now all she sees is fear and dare i say…hate. Hatred over this cruel and relentless beast that ravishes her body as a cougar devours a wounded deer, anger that runs so deep that it fills the marrow of her bones…
‘No,’ she screams, ‘you will not own me…you may have control of my body but not my mind.’ She is reminded again of the man who stole her childhood…who stole her innocence…but this intruder is not made of flesh and bone this perpetrator is a demon…a beast…a black stain…a crimson letter M…
Confusion sets in, she begins to feel lightheaded, her stomach convulses, her heart quickens, bile rises as it burns her throat, another convulsion, the room spins and twist, she expels her food. ‘i hate you…you bastard,’ she cries as she collapses on the cold hard tile…’i hate you,’ She closes her eyes and lays helplessly as ‘he’ once again ravishes and invades her body…leaving her helpless and defenseless until ‘he’ is finished, until ‘he’ is satisfied…however this intruder will not leave her body once ‘he’ is finished…his satisfaction does not end…’he’ will remain inside her hidden in her dark and secret labyrinths…laying in wait for another time to strike…another time to take…or shall i say steal…and destroy. There is no escaping this intruder…there is no place to run…no place to hide…’he’ finds her…’he’ lays in wait and strikes without warning…there is no satisfying ‘his’ hunger or lust…’he’ covets her mind…’he’ intrudes upon her body and tries to invade her soul…
Hours pass…night has come…the darkness inside mirrors the darkness in her heart…she slowly lifts herself from the tile…she looks around. She is alone…she is okay…she has made it thru another attack. But the mirror reflects the truth…she is not alone…’he’ is now dormant inside her…’he’ has infiltrated her marrow…’he’ will attack again…but when…’he’ will bide his time striking when it’s least expected striking when she’s vulnerable…’he’ knows she can not leave him…to destroy ‘him’ would be to destroy herself…
She hits the mirror shattering her image…shattering the truth…she takes her finger tip and writes with her own crimson blood the letter ‘M’
She can not bring herself to write the word Menieres…the mere mention of the word causes bile to rise…she vows to destroy this intruder one day…but for now she hangs her head and cries…
- by Matthew
I’m just an organic computer…
A pulsating mass,
of organized cells…
When it’s working, I couldn’t be cuter;
When it’s broken, I can be living hell.
Evolution is smarter than Bill Gates…
My countless neurons,
have Intel’s chips beat…
Now if only I had some Symantec,
I’d be protected from virus discrete!
Now it seems some ‘vestibularitis’…
A viral hacker,
cooked up in his lair…
Has infected my inner ear membrane,
And my system’s become quite impaired.
So quite broken, I called the support line,
“well you know, your model’s quite old”
“Seems your warranty period’s over”
“Try this bottle of pills…”, I was told.
But I’ve since learned my system’s self fixing!
The way that it works,
is really a hoot!
You just bang your head onto your keyboard…
‘Till your vestibular system reboots!
What Living With Meniere’s Disease Is Like
It is a feeling of being in a fog trying to make my way at times to my room, any room and feeling relieved to be there. Musical instruments that make various beautiful sounds that create lovely songs can be for me at times very engulfing to my ears. I feel like I am in the middle of the players and want to shout, “Stop playing”! I hear all sounds, various sounds in my ears every day, all the time.
Many many years ago, I enjoyed going to the amusement part even when my
children were grown, I enjoyed the merry-go-round and the ferris wheel, the excitement and feeling of the ride, going round and round, no more rides, those days are gone, the feeling is just like those amusement rides in my head when I do get vertigo, it is horrific feeling!
As I walk, I’m sure many times, people have looked at me thinking that I have had too much to drink, because as I am walking, I veer a little to the left or right because meniere’s affects my balance. So, I am careful.
My life has changed because of this disease. I never know from one day to the next what will happen, however, I do not dwell on what if’s. I choose what I can do and can’t. It hasn’t affected my love for my family or friendships, and life. It is a journey for me, I am enjoying my journey of life as best I can, however, I dislike intensely having this disease, but, hope, faith, courage, and inner strength is within me to deal with this every day of my life.
(This composition by Ruth was selected as the winner of our 2010 Poetry Contest and was printed in the Fall 2010 Meniere’s Resources e-newsletter and was included in our 2011 Calendar)