Month: October 2012

Soil

Good soil

Inhaling freedom

Exhaling devastation

A notion in its own

Our soil

Kissing a line drawn eastward

Prevailing a country, united

American soil

Hold me close, sweet America

A land not a land

A home twice a home

 

*I wrote this on 3.20.2003 to send to the troops. 

Pointless

Dancing, playing, fucking

Life is a joke for you.

Snarling, writhing, vomiting

Being a rebel never felt so good. 

Bleeding, acting, snapping

Your childish games have to end sometime.

Believing, relishing, committing

Choke on my name when you speak it.

Barking, chasing, judging

I wouldn’t breathe life into you.

Smiling, spewing, yearning

Be the captain of your own fucking ship.

Convienance

I am not a doormat.

I am not replaceable.

Nor expendable.

Be careful.

No one in this fucking world will love you as

fast, as 

hard, as

I do. 

I am not some silly toy for you to 

take off a shelf, play with

and leave to get dusty. 

I will not be convenient for you.

It Counts

I count on you 

to understand.

To make promises and

keep them.

I believe in you

despite it all. 

There are times when 

I need you.

When I need dedication

to go both ways.

I only take what

I give. 

I only ask for

what you receive.

Reciprocity is not just

a notion.

Fantasy.

I have studied it.

Know it.

Acknowledge it.

Reciprocity.

It counts. 

You

You are all I have

I am 

Eviscerated

Without you. 

My will to live

is defined

by you. 

My pain

Your pain

One in the same. 

I would be a shell 

Without you.

Your hands I know

Best. 

Your mind I have

Memorized.

I hang on every word 

That escapes your lips.

Your joy becomes mine

The enormity of what

We have is made clear.

Purity.

Passion.

Pain.

Joy.

What I set out to do…

When I created this blog a couple of months ago I had the intentions of speaking out about Meniere’s Disease. I wanted to educate the world on what Meniere’s Disease is and be a resource. I feel I have done that as best I can and while I have the intentions to continue forward towards this mission, I have learned something in the last few days. 

Writing gives my disease a voice, it gives me a voice. Poetry is an outlet I have always enjoyed. Some of what I have posted here are poems I wrote almost a decade ago – some are poems I wrote last night. My readers are responding to what I have to say. My poetry, my writing, gives my inner warrior a voice. I feel less angry, less frustrated, and certainly less alone in my fight. Every time someones likes something I post here I look through their work. I have been stunned and left breathless several times reading what you all write. I think you understand my need, my yearning for writing better than anyone else I know. 

I am going to continue to educate everyone on Meniere’s Disease. Knowledge is power and more people need to know about this evasive, chronic disease, but I am also going to strip down, and put my poetry here. Whatever words fall out my face, the good and bad I am going to share it here with you. 

It is what I have to offer. My writing and poetry is a manifestation of what I am feeling and thinking and I hope you all enjoy it. 

To each of you have responded to what I am doing here, thank you. I don’t know many of you, but I feel as if we are connected. 

Cruelty

She could smell the heat

Sweat

Trickling

She could taste the blood

In her mouth

Like copper

She could feel him move

Her body betrayed her

He betrayed her

She could hear her breath

Even though her mind

Told her body to shut down

She could feel dirt beneath her

Controlled

Over-powered

A slave

Door

Blue door.

It beckons me.

Shrouded in moonlight.

Reaching for the handle

My hand is cold.

I can’t face it.

What waits beyond 

The

Blue Door. 

Terrified.

Opening it has repercussions.

Looking into the eye,

The abyss,

Knowing the secrets.

Blue Door.

A Women’s Strength

A few years ago Matt’s mom was diagnosed with Endometrial cancer. He had tears in his eyes and told me he had to tell me something. “My mom has cancer.” My whole body tensed, cancer. Cancer. It’s one of those words that you hear all the time but never, ever think it could happen to someone you love. When you love someone, your feelings are wound together – I could suddenly feel this pain that I can only imagine she was feeling. My first thought was, Amanda, you cannot fall apart, you have to comfort Matt right now. He needs you. My second thought was, Matt’s mother, hopefully my future mother in-law has cancer. Is she going to survive this? My third was, damn it, comfort him. I could feel the tears in my eyes, my body started quaking, he motioned for me to come sit on his lap and we hugged each other. He was comforting me, that’s just who he is. We discussed what he had found out so far. She had an amazing staff of physicians and surgeons handling all of the scheduling and details. 

She was going to have a hysterectomy, she assured me she was going to be ok and she never waivered. I know now the thoughts that were flying through her head. She is always a mother first and thought of what this could potentially do to her children, to her husband. This is one family of incredibly strong people. When I saw her in person after we found out about the cancer I remember thinking, she looks normal, like herself, how is she smiling? How is she reassuring me that everything is going to be ok? Shouldn’t I be doing that for her, she is always a mother first. 

At this same time Matt’s dad was very, very sick. Someone that knows Matt’s parents well asked if they were trying to one up each other – how they kept laughing through everything I am still unsure about. I did what I knew best, I bought inspirational buttons, shirts, and bags for everyone. I planned to take work off and spend time at their house taking care of whatever needed to be taken care of after her surgery and when his dad was home from the hospital, I planned meals, it never felt like enough. His parents were just telling us to do what we wanted to do, if we wanted to be there we could be, they said they knew we had things going on and didn’t want us to neglect our own lives. 

She kept smiling. She kept positive. She was going to beat this damn thing and come out on top. I am sure inside she was reeling, begging for a positive outcome from everything. Again, you must understand, she is a mother first and reassured her three boys things were going to be fine. She would be fine. She kept smiling, I don’t think I saw her cry once. Things happened really fast, which was a blessing. 

She had her surgery and prognosis was good. I felt like the weight of the world had been lifted. Matt smiled, I cried. I couldn’t wait to see her, to know that there was a good chance there was no evasive cancer in her body. She was up walking around when we got to her house. She was smiling. That beautiful smile. I think I cried a little but wanted to mirror her strong smile. I wanted to smile for her. I wanted her joy to flow through me, and mine through her. She kicked cancers ass. 

Years later she is still cancer free. She is still smiling. She has taken care of me so much these last few months, always smiling, telling me that I would beat this. She has supported me, my fear, my anger, she knows how it feels to have something inside of you that is not right. She has kept me positive. She is one of the strongest women I know. She is always a mother, just like mine. A mama bear who does all she can do to keep her children happy, positive, strong. 

If cancer can’t bring her down, I don’t think there is anything that could. I am blessed to have her in my life. To remind me to smile. 

Lost

Lost

Lost in a deep dark forest

Walking slowly over

The brush and brambles

 

I halted and heard

Rustling.

Nervousness flew up my spine.

 

I started to walk east

Looking for anything

A clearing, a road, a way from this hell.

 

I saw a tower

Which meant people…

I ran.

 

Waking from my dream

I was restless

I wasn’t lost at all. 

Captor

Captor

You make me breathless,

stunned, awakened.

You pursue me,

tracking my movements.

I am wounded, harmed

breaking the earth as I run.

I am cold, anxious, 

panicked, but alive.

You smell my fear,

my blood, my quickened pulse.

I grow lifeless, limp

turning to watch my captor take me.

I find I am only chasing

myself. 

My Demon Inside

My Demon Inside

It calls.

Beckoning.

Rearing it’s head.

It’s fingers, brittle, cold as stone.

This demon knows my soul.

It has penetrated my inside.

It calls. 

Beckoning.

Never stopping, never quiet.

I beg for silence, it does not allow it.

My demon is angry, abrasive.

My demon inside me. 

The plight of women…

With all of this election stuff going on I am noticing how little women’s right are brought up and discussed. This excerpt is from The L-Word, which really focuses on women’s rights. I think it’s beautiful. 

Jenny, “It’s not my job to make you a better man, and I don’t give a shift if I have made you a better man. It’s not a fucking women’s job to be consumed, invaded, and spat out, so that some fucking man can evolve.”

Jenny to male roommate, “What I want is for you to write ‘fuck me’ on your chest. Write it! Do it! And then I want you to walk out that door and I want you to walk down that street. And anybody that wants to fuck you, you say, sure, sure – no problem and when they do you have to say, thank you very, very much and make sure you have a smile on your face. And then, you stupid fucking coward, you’re going to know what it’s like to be a women.”

To me, this is powerful. 

A Dizzy Girl Copes With Stress

I can relate to everything you said here. Thank you for sharing.

My So Called Dizzy Life

Stress.  We’ve all been faced with it.  Stress affects our bodies and can pretty much make any illness worse.  Start with a little tickle in your throat, add in some stress and suddenly you have a full-blown cold.  Start with a little headache, add in some stress and suddenly it feels like someone is taking a sledgehammer to your head.  Start with a dizzy girl who has balance issues, add in some stress and suddenly the dizziness & disequilibrium are worse.  Yes folks, stress can exacerbate the symptoms of a balance disorder.

It is how we cope with stress that makes the difference.

In the past, I’ve been known as a stress magnet.  I have been doing my best in the past 4 months to keep my stress levels down.  I made a conscious choice to change my outlook and how I react to things.  I may have no control over some of the things that…

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Did the earth move for you? – Dizziness and Balance Week

Burning Pine Ltd

ms-logo-flat-transparentThis week is Dizziness and Balance Awareness Week in the UK.  More info is available from the Meniere’s Society on Facebook, website or Twitter (@MenieresSociety).

I thought I would celebrate by sharing this study: Morbidity in Meniere’s Disease by Anne Charlotte Hessen Soderman.

A fellow trustee, David Riches, pointed me towards it and it’s an excellent summary of all that’s known – and still unknown –about the condition (as at 2002).

 

Technorati Tags: Meniere’s Disease,Meniere’s Society,Anne Charlotte Hessen Soderman

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Forgiveness – it can mean forgiving yourself too…

Forgiveness means ‘allowing room for error or weakness’ or ‘to forgive’. 

It’s complicated.

It’s not always easy.

It’s a big step because I’ve never honestly forgiven a lot of people for things they have done. 

Even if what they did doesn’t directly affect me.

When you hurt someone I love, you hurt me.

And I never wanted to forgive you for that.

And I never wanted to forgive you for what you did directly to me.

But…

I’ve decided that carrying around a grudge sucks…

And I forgive you

And you

And you

And anyone that has hurt me in the past

And I hope that you can forgive me too

Because I know I’ve directly and indirectly hurt you too.

I can’t carry around a grudge anymore

Forgiveness is for the strong

Holding grudges is for the weak.

I’m sick of being weak…

Forgiveness

Sometimes

Sometimes

October 7, 2007

Sometimes I don’t hear you,
It’s not that I’m stupid or don’t understand,
So I’m sorry, just please speak louder.

Sometimes I can’t look you in the eyes,
Because when I focus I may get dizzy,
So I’m sorry, just please don’t look away.

Sometimes I may stumble or fall down,
Because my balance is always off,
So I’m sorry, just please don’t make fun of me.

Sometimes I may lose things easily or drop things,
Because my coordination is always off,
So I’m sorry, just please ignore it because I can’t help it.

Sometimes I may be frustrated or upset,
Because taking every step with your disease wears down on you,
So I’m sorry, just please be patient along the way.

Sometimes I may withdraw from you,
Because you may not understand,
So I’m sorry, I will always come around.

Sometimes life is worth fighting for,
Because someday, somehow, I will be ok.

HERS, a survivor’s story

HERS; Speaking of the Unspeakable

BY ALICE SEBOLD; Alice Sebold is a writer who is working on a first novel, ”Jericho.”
Published: February 26, 1989

IN 1981, ON THE LAST day of my freshman year in college, I was raped in a park near my dorm. In this country, nearly three out of every four women could be the victim of a violent crime during their lifetime. What is unusual in my case is that the rapist is now serving a maximum sentence of 25 years in prison. When I was raped I lost my virginity and almost lost my life. I also discarded certain assumptions I had held about how the world worked and about how safe I was.

The rapist attacked me from behind. He and I fought in the open. I screamed. I punched and scratched him with my nails, but he eventually got me on the ground. With a knife in one hand and the other so tight around my throat I couldn’t breathe, he made it clear that he would kill me if I didn’t cooperate. He dragged me into an abandoned tunnel. He stripped me and repeatedly raped me on top of broken beer bottles. He kept me prisoner for two hours. He urinated on me, he called me every obscenity, and he forced me to perform oral sex.

I did what women in rape prevention classes are taught to do: I saved my life. I pretended to pity him. I told him he was strong. That was what he wanted to hear. I told him that I was so ashamed of what was happening to me that I would never tell anyone. He had knocked off my glasses when he jumped me so I told him I was almost blind without them. But in fact, I committed every feature on his face to permanent memory. I know I did everything right. I survived.

I am alive but eight years later, I can still see and smell that tunnel. And eight years later, it remains true that no one wants to know what happened. The wall of silence and assumptions that surround the crime are one of the most painful results of rape. It is a sad fact that despite increased attention to the issue, opinion is still shaped by a dark collection of stereotypes.

Shame and pressure to forget are the most common reactions, not only for the victim but for the victim’s family. The majority of rape cases go unreported. Women seek counseling from rape crisis centers years, sometimes 20 years, after the crime. As a result of my rape becoming public knowledge in my community, a 45-year-old woman, the mother of a friend of mine, told her two teen-age sons that she had been raped when she was 18. My friend later told me that his mother had faced the window, doing dishes, as she described the attack to them and the effect it had had on her. She had never told anyone.

After the rapist let me go, I made my way back to my dorm. The desk guard put me inside his glass box of a station until the police arrived. Slowly, as news spread through the halls of my coed dorm, students began surrounding the glass-walled room where I was now, in another way, held prisoner. My fellow students stared at me as if I were a girl on a TV screen. When they looked at me, what they saw under the blood and matted leaves was what I had become for them – a rape victim. In the following years, throughout the trial, which ended in 1982, many remained unable to do more than stare.

Ignorance hurts. In the beginning, even my own father, who has spent his life working with young people, confessed to me that he did not understand how I could have been raped if I didn’t ”want to” be. In Pennsylvania recently, Stephen Freind, the Delaware County Representative to the State Legislature, repeatedly stated that rape victims rarely got pregnant because women under stress have difficulty conceiving. This misinformation supported anti-abortionists in their position that rape should not be part of the abortion controversy.

In New York recently, my gym opted to give studio space to a course called Dirty Dancing instead of to a self-defense course for women. Self-defense is seen as out of style while Dirty Dancing is hip. Unfortunately, rape is not a craze but a constant. So is our need to protect ourselves and those we love by listening to articulate victims.

In the college classrooms where I teach English, I hear naive assertions about rape. What it’s like; who rapes; who gets raped. This willingness to type the victim or the attacker is dangerous. It separates us from the reality of rape’s threat in our own lives. Stereotypes are attractive because if we don’t fit the stereotype we create, we conclude it is impossible for us to be victims. The ”it-can’t-happen-to-me” mentality affects women of every class. Women disassociate themselves from rape because the vast majority of people still believe that a woman who has been raped is filthy, better off dead, irrational, or got what she was looking for.

Rape can happen to anyone and it does. Currently, an average of 90,000 rapes are reported in the United States yearly. According to rape crisis center intake reports, 60 to 70 percent of these are acquaintance rapes. We cannot afford to remove ourselves from facts as clear as these.

We must hear, not assume, the experience of rape victims because our best and only defense is knowledge. A current issue of my university’s campus guide, under the description of the park where I was raped, a park heavily frequented by students, says more or less what it said in 1981. After a lengthy description of park ball fields and basketball courts, the last line reads ”watch out after dark; scary things have been known to happen.” Rape is a nasty word. It is easier to avoid it. This degree of denial and prettification is dangerous.

In my senior year at college, a rapist began attacking women in campus sorority houses. The university was forced to deal with the issue, and claimed that these incidents were extraordinarily rare. It blamed the rapes on carelessness, on a lack of security being observed within those houses where rapes had taken place. In a certain sense, therefore, the school blamed the victims. Small voices revolted and sidewalk graffiti appeared. YOUR DAUGHTER WAS RAPED HERE shouted up from the pavement at prospective students touring the quad with their parents.

The voices of rape victims and their families can be powerful. They can be heard. As a result of a rape and murder on the campus of Lehigh University, the State Legislature passed a ruling on May 26,1988, that requires all colleges in Pennsylvania to publish crime statistics and make them available to prospective students. It was due to the advocacy of the victim’s family that the ruling was passed.

These are voices we must heed. Outrage and clear thinking and political action can work together to dispel the shame and ignorance that surround the crime of rape.

 

To my mother, always…

My dearest Mom,

A mother’s love is a profound phenomenon. It is the most complex type of love, because it is truly unwavering and an undying love. It is impossible to comprehend the love a mother feels for her children, to anyone who is not a mother. There are thousands of stories of a mother’s love being able to conquer all things, even though those things seem impossible. It is a pure love, one with no strings, with no terms and conditions.

There are millions of children in this world who will not be able to experience the love of their mother. Yet, a mother’s heart has the ability to love other children, as if they were her own. Only a mother’s heart has the capacity to feel this kind of love for a child that isn’t her own. This makes a mother’s heart the most precious.

Even though I have done things that I am not proud of. You have never stopped loving me for a second. The only way I feel I can pay this love forward, is to love my children the same way you have loved me. There is not anyone else in the world that would fight for me as hard as you have and continue to do. There has never been anything that you have told me I could not do if I put my mind to it. You have never let me down and have always had my back. There are so little people in this world I can truly say those words about, but you love me with no expectation of anything, but love in return.

I do not say it enough, but to me, you are the strongest woman I have ever met. We are two souls, bound together by the love a mother has for her daughter, and the love a daughter has for her mother. We have faced the same struggles, the same insecurities, and the same success of becoming two women who know exactly who they are, and love the people that surround them with everything they have. There is no one else that I have learned how to love better from than you, because you are my mother.

You have taught me to love deeply and passionately and to love and appreciate all living things. You have taught me that it is better to die fighting for something that I believe in, then sit quietly and watch the injustices of the world pass me by. My heart bursts with love and appreciation for you. I will never be able to pay you back for all of the things you have done for me, however, when I am able to experience this special love that only a mother can feel, I will instill these things that you have taught me into my children and tell them about how strong their grandmother was and how only a mother’s heart can understand the love for her children.

I love you.

Words on Paper

Words on Paper

My hand is sore but

I cannot stop, writing is my soul

My voice is loud, within my head

From head to toes I crumble.

My words bind together

My heart stands clear

My head is jumbled with rhymes.

 

The sun is clear

My arm is tense

The words fall from my face

My thoughts are made of these. 

My friend Kara

Meet my friend Kara. Beautiful, headstrong, hilarious, honest (brutally so), stubborn, hardworking, methodical, organized, a cynic, and dedicated. I will never forget the first time I met her. Sophomore year at college, brand new school, no friends, Matt moved me in and left – I had no roommate and spent the majority of my first day alone, crying, feeling stupid and alone, feeling stupid for being alone, being alone and feeling stupid. Her roommate invited me to join all the girls (who obviously knew each other before sophomore year) outside and the first thing I did was call my boyfriend. “Matt they want me to go outside”. Dead pause. Silence. “So go out there he says.” “What if they don’t like me?” I responded. Terrified, like I had never done this before. Making friends has never come easy for me. “Amanda, go out there and meet new people.” I hung up the phone, pulled up my pride and walked outside.

There are few things I remember vividly about that first meeting, because I had met my new family. It was as if I had known these women all my life and was a piece of the strangest jigsaw puzzle of women. For the first time in my life I felt like I belonged. Kara was among these women I met. After we hung around and got some food we went to play some drinking games in Kara’s dorm. I don’t drink. My anxiety peaked, shit they are going to think I am a freak. A few of these women questioned why I didn’t drink, Kara never even batted an eye. She taught me the drinking game and told me to just drink my Mountain Dew – I felt like an idiot, but played along and had fun. Some put on some pressure to drink, this isn’t to be negative to these women, it was playful, just do it, just drink a beer, it wasn’t mean, but Kara told all them to shut up and I could drink my Dew. She felt like a big sister. The relationship that formed between Kara and I was slow at first. She is a hard one to read. She can be moody. The first thing I learned about Kara is she takes naps, long ones, 5, 6, 7, 8 hour naps and you musn’t wake her from these naps. I am not familiar with napping. I always assumed toddlers, cats, and the elderly napped so the first time I woke Kara from her nap was quite an experience. ha ha the look on her face was nothing short of murderous.

I am the type of person who if I sense someone is upset, I had an uncanny way of making whatever is troubling them, my fault. I did something to piss them off and whatever I have done must be remedied, immediately. Kara would come back from class, go to her room, and shut her door. Our doors faced each other and mine was always open. She wouldn’t say a word to me and I would panic, ehhh what did I do? I learned quickly that Kara needs her space. I began to envy this about her. She has no shame is being pissed off and needing time by herself. My door was always open, if I was pissed off people would come in and I would smile and fake it. Kara. Never. Fakes. It. She is always honest and always willing to tell you if she is pissed off, if she is pissed off at you, and let’s you know exactly what you did/said/didn’t do/didn’t say. I envied her honesty, her ability to put herself first – in the most selfless way. This sounds like an oxymoron, but we all have that one person in our lives who is fearless about being exactly who they are and we envy that part of them. Kara lives her life with the attitude of, I am who I am and if you don’t like it, that’s fine, but don’t try to change me in the process. She has no problem slamming the door in your face if she needs time for herself. I want to possess these qualities in this women who I love and look up to so much. I want to be able to tell the world I need a break, I need a minute to be who I am. I need a minute to be pissed – sometimes for no reason.

I also quickly learned that Kara is one of those people who will do just about anything, for anyone. While she had this uncanny ability to shut out the world and take time for herself, she has found the perfect equation for taking care of herself and others. Kara is the one who I could go with any and all problems. She will never tell a secret. She will never kiss you on the cheek and turn around to stab you in the back. She believes in wholeheartedly in loyalty and brutal honesty. I struggled with a very close friend of mine the last few years of college. I don’t do well with change, I don’t do well with watching the people I love move on. I remember being best friends with my cousin growing up. We just far enough apart in age where there was a point where I was playing with my barbies and she was playing with her Easy Bake Oven and I remembered thinking, she is going to grow up and abandon me. I don’t know why I have such issues with this. An unrequited fear of being left behind.

One of my best friends was moving on, and I was losing control. Kara would tell me to shut the hell up and get on with it. People and circumstances change and you either have to change with it or let it go. Kara and I have never talked about it outright, but I know she has had some sadness in her life. She was always there, supporting me. I remember the day she told me she was going to move to the cities and go to a different school. Abandonment. I felt that sick feeling in your stomach. I wanted to cry, I think I did cry. She promised me we would stay close no matter what happens. I didn’t believe her. Everyone who leaves, leaves for good – I am no fool. She kept her promise. We still managed to see each other at least twice a month. Our couch was her second bed, any excuse we had to get together we took advantage. She would find a mouse in her apartment and would come over. Nothing changed except for proximity to each other.

We all graduated from college the same year, I stayed in the town we went to school in and Kara moved home which is hours away from me. We still kept in touch, she would drive the hours to come see me whenever she had the chance. That is dedication. It is not a convenient friendship. Kara was offered an internship in Denver, CO last summer and I think I cried for three days. Selfishly, because she was leaving, but I was also happy for her. She wants to travel, wants to stretch herself every way she can. She has little tying her down, she can pick up, pack up and go. I envy her for that too. She is independent. We talked at least once a week on the phone and she flew home for a friends wedding. I got sick when she was in Denver. She was calling and texting me almost everyday wanting an update. She would tell me she would have been at the hospital with me if she could have and I believe her. I know she would have. She would have made me laugh despite the situation. She and a friend sent me flowers when I got home from the hospital. When she moved home I was one of the first places she came to. We drank grape soda, ate candy, and laughed until we cried. She helped me clean out my closet and dresser and took about 10 days and clothes to donate/sell for me.

She still asks me how I am. She lets me be pissed off at my disease. She never sugarcoats. She lets me be sad. She lets me vent and never judges. She never tells me that everything will be sunshine and roses because she is real. She is raw and I need her for that. I am not writing about her right now to toot her horn or get something from her. I am writing about her because I think that it is crucial to find someone who fills the spaces in your heart where no one else can reach to. Kara and I rarely get ooey gooey with each other. Touchy feely really isn’t our relationship, but I think our hearts are full of nooks and crannies that few people can touch, and it’s not just the touchy feely friends that can reach there. It is the real, raw, loyalty, unchanging, unwavering, selfless friendship that reaches those places. I am also writing this because I don’t think enough people tell Kara how special she really is. Not to say she is not confident, she is. But inside of us we are all questioning exactly what we mean to people and we perceive ourselves based on how other perceive us. All I have to give her is this, a blog post about what she has taught and given to me. She lives hours away from me now (closer than Denver thank goodness), but oceans couldn’t take what we have. This is what I can offer her. What she has given to me, loyalty, honesty, and love.

I have so many wonderful friends who I could write post after post about. I have been blessed to have a group of women in my life who have changed the way I look at myself. Many of them have moved on with their lives and are starting their own families and traditions. I am so excited for them to start their lives, but I miss them all the same.

I miss the days when life seemed so difficult but was really so simple. To my friend Kara, who reminds me every day to stand a little straighter, shine a little brighter, never be afraid to close the door and take a minute to be 100% yourself, and that people our age do in fact… nap.

The Oak Tree

I received a beautiful card from Matt’s mom a few weeks ago and I really wanted to share it all because I pull it out and read it on a rough day and it reminds me that we all have roots that are too deep to destroy. 

A mighty wind blew night and day, 

It stole the oak tree’s leaves away, 

Then snapped is boughs and pulled its bark

Until the oak was tired and stark.

But still the oak tree held its ground

While other tress feel all around. 

The weary wind gave up and spoke, 

“How can you still be standing, Oak?”

The oak tree said, “I know that you

Can break each branch of mine in two,

Carry every leaf away,

Shake my limbs, and make me sway.

But I have roots stretched in the earth,

Growing stronger since my birth,

You’ll never touch them, for you see, 

They are the deepest part of me.

Until today, I wasn’t sure

Of just how much I could endure.

But now I’ve found, with thanks to you, 

I’m stronger than I ever knew.”

Half the Sky

This post does not pertain to Meniere’s Disease, however I feel so compelled to speak out about it, I would be remiss if I didn’t. My grandmother bought me a copy of Half the Sky a few years ago and it was a book that was difficult, yet captivating to read. The stories of women and girls who are bought and sold for sex slavery, forced to sell themselves for meager amounts of money and beaten if they do not make enough money, girls who are mutilated to control their sex drive, who die during childbirth and have gaping fistulas after being mutilated are horrific, terrifying, but a cruel reality of the world in which we live. I have never been subjected to this type of violence. I am a small town girl, corn fed in the Midwest in a country that is rich, where sex slavery happens but is hidden, swept under the rug. Half the Sky recently made a documentary that aired on PBS. Every single person should read the book and watch the film. I find myself reeling inside for these women. These women who ride above the oppression and are paving the way for a safer world for their sisters to live in. 

It makes my current situation seem so small. I have had the honor of working with victims of sexual assault and the pain on their faces is the same pain. All pain is the same. It is the emotion that so deeply connects us as human beings. I encourage everyone to watch the film, read the book and if we all do one thing, large or small, we can begin to change this world for these women and girls. 

Keep On

I am getting better. Recovery isn’t going as fast as I want and need it to, but nonetheless it is happening! I got a second opinion from a different ENT who didn’t have a whole lot of insight into what was happening. Dr. Paparella wants me to try out Scopolamine patches but there is a snafu with my insurance so we are waiting to be able to fill it and give it a whirl… so to speak. It is prescribed to sailors and aviation employees for motion sickness. I am ready to try something new.

I am still doing physical therapy which helps a lot as far as being comfortable since I have to sit in a pretty weird position as well as sleep in a weird position in a recliner. It is really amazing what my physical therapist does. Sometimes it seems like she isn’t doing anything because she is targeting specific muscles and using her hands to manipulate tendons and muscles. This last visit she had one finger in my mouth (it felt like she was wiggling my eye, which ironically enough she was working an orbital tendon), and then had one finger on a muscle near my temple. It was intense, white pain – blinding, it was so sore but I am able to wear my glasses full time again with no pain and can track with my eyeballs much better since the visit.  Going through PT is like finding out what never hurt before, having it hurt like hell, and then suddenly having relief you never knew you needed.

I continue to see my care team often. My GP is on maternity leave until the end of October so I am following up with a fellow doc who is also wonderful. I continue to see my surgeon every once and a while and am constantly making phone calls and setting up appointments for various visits, blood draws, injections and so on. I am a human pin cushion. You would think I would be a pro at getting blood drawn but I still get shaky knees and a fluttering in my heart when they poke you.

I still am using a walker and am actually excited because next week I am getting my own walker rather than a loaner from the hospital. I use it primarily out of the house, but still do need it more times than not.

The worst part about Meniere’s is the unpredictability of it. That and the fear. Sometimes I will be thinking about something other than Meniere’s, focused on a TV show or movie, or in the middle of chopping an onion and suddenly that fear creeps into my mind. Am I ok? Am I going to get dizzy? Can I finish this task? Then it becomes a snowball. Am I ever going to be ok? Will I ever not have to feel this? Should I sit down? Will I ever be able to travel? Have children? I know it sounds ridiculousness but this is how my mind works, it goes so quickly from one thing to another. In a split second I have asked myself a million questions that I can never seem to answer.

I know anxiety only makes things worse, but on top of everything else I am having a hard time with money right now. I filed for disability but won’t have a decision until the earliest January and chances are high I will be turned down. I lost my unemployment because I am not able to work right now. So I am bringing in nothing and most of the financial burden falls on Matt. It is so unfair. My family is helping as much as they can. Everyone is struggling. I am calling organizations begging for emergency funds and they are forced to treat me like a criminal because so many people take advantage. I hope Ellen reads this! ha ha

Life is so messy. It’s a sticky glob of trying to balance yourself, your heath, your sanity, and then the health, and sanity of those you love the most. I consider myself to be pretty selfless. If I can put you in front of myself to help you out I will. It has gotten me in trouble a lot throughout my life, but has also given me the opportunity to volunteer and help those who need someone selfless in their lives. But when it comes to my recovery I am horrible at putting my recovery first. Matt reminds me all the time that I need to be selfish and put myself first. It’s so hard to do that. My pain and sadness is also my mother, father, my families, Matt’s sadness. We are all woven together so deeply that each one of us feels what the other is feeling. How can I ignore all of that and focus on myself? I need to smile, I need to be strong on the outside for them. They would die for me, for my health, for my happiness, how can I not offer the same sacrifice? If I was someone else I would tell myself to shut up and buck up and get my health under control. But taking your own advice is never easy.

I am trying to keep my head above water. I credit myself for coming this far. I must keep focused. I have to work hard, challenge myself. Get out of my chair. Clean the kitchen. Do the dishes. Clean the liter boxes. Dust. Chop onions. Smile.

 

Meniere’s Disease and Pregnancy Stories

Meniere’s Disease and Pregnancy Stories

This is a few postings about Meniere’s Disease and pregnancy I found, well disheartening, but informative. Please share any stories or experiences here. I do not plan to have children anytime soon, but hope to someday so I want to make sure to share something out it here. Feel free to share any experiences you have had here.

Guess who?

I have decided to continue on with my blog. After a timely hiatus, and some much needed reflection time I have decided to continue on and put my thoughts, feelings, and struggles out into the world. I began this blog with the intentions on education about Meniere’s Disease and try to not things get personal. However, after my surgery and the complications I have been struggling with, things got very personal, very fast. Some would say I have become negative, dark, morbid. I disagree because anyone who has had experience with Meniere’s Disease knows that there are good moments and bad moments. Expressing both are healthy and necessary for me.

I chose a song by a local artist group (Atmosphere) to post here. I love all of Atmosphere’s work actually. They have a huge cult following and I was introduced to them when I moved to Mankato, MN for my first year of college. While the song is not super happy and chipper, parts of the song have such deep meaning for me. For those of you who may have read it and not understood why I posted it, I would like the chance to explain a bit.

Been payin dues for a decade plus,
Before that i was just another face on the bus
Tappin my foot, to the beat on the radio

I have had Meniere’s Disease since 2006. I have been paying my dues, putting my energy, my life into this disease for so long. Before this disease, I was just another face on the bus, tapping my way through growing up. I had a normal childhood with the trappings of a bratty teenage girl. I starve for normal, average, typical.

The world keeps a balance, through mathematics
Defined by whatever youve added and subtracted
Im pushin on the hammer, to trigger the brain
Embrace how i live it, god loves ugly

The first few words of this snipit are so true for me. Everything is a balance, what you add to this life and what you take away. Through all of what I have been through I have the understanding that I have to find a way to embrace how I live my life, and what that entails. God loves everyone, even the ugliness that we ALL possess. My ugly is my Meniere’s Disease.

Nobody sees tears when youre standing in a storm
Abandoning the norm, and handling the harvest
Measuring the worth by the depth of the hardships
I welcome all the hatred you can aim at my name
I held on to the sacred ways of how to play the game
When the soldiers started runnin short on rations
I began tappin the egg, to spark the hatchin
Make it happen
And take this captain to the gallows
I keep steerin us into an area thats shallow
Talkin to my shadow, he advised me not to worry
He said i should plant my tree and let it rise out of the fury

This whole piece of the song really touches me. Nobody sees tears when you’re standing in a storm. Since my surgery, everyone including myself has been so caught up in this storm that we have been through. My tears, my mothers tears, my fathers tears, those tears are hard to see when everyone else is caught up in the moment of everything else. Everyone has struggles, some more intense than others, and on one level people are judged and their worth is measured by what they have been through. I want my worth to be measured by how I get through and survive this. When I think of what I am going through I think of a wildfire, burning and destroying everything in it’s path. When the fire settles, and that first green bud of life pokes through the scared ground, that is me. That is me after this experience. I have planted my tree and am going to let it rise from the fury.

Why scream, when you can lose yourself inside the wide-screen
Let life be a bowl of melted ice cream
Or be the deer thats caught in my high beams
Im rollin with the lights on, scared stiff
Reality is just too much to bear with

This last piece is really where I am today. My life is a bowl of melted ice cream – and I have to let it be that way for now. I’m walking around terrified, scared, never knowing what each day is going to bring. Reality is so much to bear right now.

I am the first person to understand that everyone interprets things differently. Music is a difficult one because you never know why someone enjoys a particular song. I try not to jump to conclusions because there is some music that I listen to that a majority of the people that know me best wouldn’t understand why I like it. Often there are pieces of a song that I connect to and the rest are just words.

Music and writing have always been a way for me to escape, to express. The only thing I want from this life is to be free, free from Meniere’s Disease, free to express myself, free to comfortable in my own skin. From now until this blog stops being cathartic for me – I am going to be real. I am going to tell you all how it feels to live with Meniere’s Disease. I will share the highs and the lows, because it would be silly for me to pretend that everyday is filled with lollipops, rainbows, and roses. Some days are – some are not. I have moments of pure joy and happiness. I made THREE meals this past weekend by myself without needing help. I played with my cats, I kissed Matt, Kara made me laugh so hard I cried… those are the moments that define my happiness. It is difficult for me to talk about the good times for some reason. Some would say I have an easier time expressing negative feelings. Maybe that’s true – but I don’t think so. I think we connect best about our struggles. We find solace in knowing that other people are going through what we are going through. If I come across a blog or someone who says that Meniere’s Disease is an enjoyable way to live your life I leave the site or stop the conversation. Why? Because it isn’t real. I can’t relate to that because I struggle. I hate this disease. Anyone who says they don’t are entitled to feel that way and actually I am jealous because I can’t find it in myself to roll over and let it own me. I own my disease, it doesn’t own me. But that surely doesn’t mean I don’t struggle with it and have moments of utter fear. My posts speak to the fact that I won’t and can’t give up. I have never let any struggle in my life beat me. No one owns me. I am head strong and stubborn and Meniere’s Disease will never take that away from me. This blog may not be for everyone. If expressing myself the way I do it offends someone, I am so sorry for that but you are welcome to move on. I won’t be upset with you for it.

I recently found a brilliant website called DizzyDad.com he blogs about his experiences with Meniere’s Disease. He is not afraid to talk about how crappy things can be and how findings those pure happiness moments are possible too. It is so real and raw for me and I can relate to it. I hope you check it out and that you stayed tuned in here. I will do my best to keep a balance. I love each and every one of you who visit this site and can relate to what I am saying. Please feel free to comment about anything. If you love or hate what I have to say I would enjoy hearing it.