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Archive for the ‘A place where I can bid my heart be still’ Category

BAW_lockup_colorIt’s almost vestibular awareness week.  I share these dates, I share the VeDA site this time every year, but I never really explain why or what it is.  To a certain extent I am afraid to do, to have people understand some of what I deal with…what my chronic illness is like because it can seem scary if you don’t understand, if you don’t know how careful and how aware I am of my body and what is happening at all times.

So, what is Vestibular?  Do you know?  Until 8 years ago I didn’t know that word.  By the way it is the balance functions of the inner ear.  Did you know that your inner ear is responsible for balance, had you ever thought about the fact that there is a part of the body that works for this?  I didn’t not really.  I knew that my grandma Helen had a balance disorder and that as a kid I thought she was kinda boring and I hated that she couldn’t do so many things, but I didn’t get it and I certainly never thought about it. I often wish I could go back in time and tell that little girl to be kind, to ask questions, to appreciate all that Grandma did considering that battle she was fighting.  No one really thinks about the idea of balance and the body until it affects them.  This is where my story begins and the reason why I share VEDA every year.  Oh, yes VeDA is the Vestibular Disorders Association.  There are lots of vestibular conditions, most are little known and even less understood, and I have one.

Here is my Story:

My story began in mid June of 2010.  I woke up as normal one day and discovered that my left ear was stuffy and my balance was off.  My only real thought being ‘great another ear infection’.  I guess in some ways my story began before that June day, all my life I’d dealt with ear infections and in my late teens I’d had some dizzy issues that had been attributed to sinus congestion and ear infections.  I dealt with the fullness in my ears and the slight balance issues for a few days before going to the Dr and sure enough I had an infection.  A few days later the dizzies were worse they had escalated to full on tilt-a-whirl moments and I couldn’t hear anything in my left ear.  When I went back the Dr, my concern being the dizzy, they referred me to an ENT they weren’t worried about the dizzy but the hearing loss.

A week later I had my first hearing test since I was a child and was told that I had a profound, at the time 80% loss, in my left ear.  At that appointment my new Dr. told me that she thought I had a tumor pressing on my auditory nerve.  Que utter terror!!!, also I wanted to know when the world would stop spinning, they were not concerned.  I was told it would fix itself but would likely be a few weeks.  A week later I had my first Head MRI…lots of fun for claustrophobe and someone who now got dizzy when laying in any position other than on her right side with her head tucked in.  I few days later the doc called and told me the MRI showed nothing but now she wanted to do a Head CT to check some bone.  Scheduled that…guess what…NOTHING!!!  At this point is had been months, I had had all these tests including having my hearing checked again and it only got worse.  I was missing at least one day a week of work due to the dizziness.  I’d even had to be practically carried from my room as it turned into a tea-cup ride one afternoon.

Finally, I had another face to face meeting with the Dr.  The conversations at home had been about Grandma Helen.  See she had Meniere’s Disease, she had a vestibular condition, and what I was experiencing was her life.

In Late August/Early September I finally got the Dr. to take the Dizzy part of all this serious.  Yes, loss of hearing bad, but ya know what loss of balance bad too and it was not getting better, it was getting worse.  In late September I had what I refer to as the ‘spin around and make you puke test’.  No actual physical spinning involved, just lots of tricking your body into feeling like it’s spinning.  At the end of the test I had a diagnosis, I had a Meniere’s.  There is no cure, there are sort of treatments, and at 29 years old I was young for the onset of the condition.  I will add that I was lucky most people wait years for a diagnosis of Meniere’s.  It is generally a diagnosis of elimination in which you spend years doing one test after another to eliminate causes and more common conditions, because of my familial history I had people who were knowledgeable and who pushed to find out if this was it, there is also believed to be a genetic component.

At 29 years old I was positive that my life was over.  My dreams where done.  I was a preschool teacher who couldn’t spin, couldn’t bend over, couldn’t guarantee that the word wasn’t going to become a merry-go-round at any moment.  I tried, I struggled, and I fought for normalcy.  For a little over a year I continued what I was doing before realizing it wasn’t working anymore.  I was terrified, I was miserable, my co-workers were rightly frustrated, I was seriously depressed, and angry at the world.  Putting on a happy face for families and for my amazing kiddos was wearing and that exhaustion just made things worse.

I left a job that I loved and tried to figure out what my new normal was, what my new dream was, what I was going to do with my life now that I fully believed I couldn’t do what I loved.

I spent many years after my diagnosis, and really the onset of symptoms, terrified.  Living in a world where your body can betray you at any moment is scary.  There is a reason so many with Vestibular conditions have PTSD.  Eventually you figure it out though, for me it took about 3 years of despair and giving up before I figured out that I wasn’t willing to give up my dreams and I was going to figure this life with Meniere’s out.

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It has been just over 8 years since the onset of my Meniere’s.   And it has been 5 years since I decided I wasn’t going to give up on what I loved, working with kids.  I returned to teaching 3 years ago and I teach without fear most days.  I know what my triggers are, I know how to deal when things get off balance, and I have less of those whirligig moments.

I still have moments when I reach out for the wall.  I am careful about getting over tired.  I occasionally have those ‘drunk’ moments.  I have lost 90% of the hearing in my left ear.

BUT, I am blest!  I watch the people in my support groups who are still where I was…even years later, I worry about when those bad bad days will return but I try, so very hard to not let them rule my life.  I don’t physically spin about anymore, and I think about how I move but my life is MINE and I get to do what I love!  I fought and continue to fight for my dreams…I pray that I will never lose them.

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Consider helping VeDa by donating here.

LEarn more about VeDA and vestibular conditions at their website vestibular.org

 

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33572afbc6659890d6628f81a19ab2bc--miss-you-daddy-i-miss-uAs anyone whose spent much time in my Blog know this is a place I come to talk about many things, especially feelings, and try and quiet my mind.  Also, as many know I lost my father in January.  It’s been a rough year…hell it’s been a rough couple of years going back to his being sick and on through his death and the processing of that.

I’ve thought a lot about the process of losing a loved one this year.  I’m not sure, hell I know, that I haven’t done this well and certainly haven’t done this gracefully.  I miss my father so much, and as the holidays approach (and pass as this has been the growing feeling since Halloween), as the anniversary of his death comes near I feel like I am failing at my life.  I am so on edge emotionally, I feel like I am going to break to pieces on a daily basis.  I have to hold myself together…people tell me it’s ok, it’s ok to feel it, to be kind to myself, to be gentle with myself, but I don’t know how.  I don’t know how to do all that has to be done and allow myself to fall apart at the sometime.  I have to hold on, I have to push through…put I’m not doing that well.  The smile is breaking, the façade is crumbling, the mask is gone and all that’s left is me and my sorrow and my pain.  Holding back the tears with the broken strands that are left…and more and more are breaking through.

I’m failing at faking it…I’m failing at a lot of things right now.   So if you have to deal with my in the real world give me a little bit of grace cause I really am trying…trying so very hard.

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A little over a month ago I asked the Priest-in-Charge at my church if I could talk to the congregation about the importance of children in our church and the need for people to work with them.  His response was that he wanted me to give a sermon…I figured he’d finally lost his mind.  Some weeks later I got an email from our associate priest about a Sermon class she was offering.  I signed up.  What follows is the sermon I wound up writing.  My goal was a sermon about the importance of children but what was impressed upon my heart as I wrote was the importance of God’s love for ALL humankind and how we adults need to see that love with the purity, innocence, and awe of childhood.


Christ children4

Mark 10:13-16

13 People were bringing little children to him in order that he might touch them; and the disciples spoke sternly to them. 14 But when Jesus saw this, he was indignant and said to them, “Let the little children come to me; do not stop them; for it is to such as these that the kingdom of God belongs. 15 Truly I tell you, whoever does not receive the kingdom of God as a little child will never enter it.” 16 And he took them up in his arms, laid his hands on them, and blessed them.

Have you ever told a small child that God or Jesus loves them?  Have you watched their face as they take in these words?  Their reaction, is truly enchanting.  One might think that this would be true of telling them that anyone loves them but it’s not the same when they are told that their families love them or that their teachers, or friends love them.  There’s almost this sense of ‘well no duh’ from most of them at these revelations.  But when you tell them that GOD LOVES them the joy and amazement is almost palpable.

At the school where I teach we have chapel every Wednesday morning where we talk about our school’s virtues and about God and Jesus.   My co-teacher and I continue these themes throughout our days learning.  We read stories about God’s love, talk about our school virtues which are the fruits of the spirit, and sing songs like Jesus loves me.  At the end of our circle time we go around the room telling each child individually that Jesus LOVES them.  As well as their mommies and daddies, brothers and sisters, teachers and friends, that God loves EVERYONE.  The first few times we do this the look of amazement on their faces is touching.  That amazement turns to an effervescent Joy as the year progresses…but it is always there.   No matter how many times we tell them that Jesus or God LOVES them there is an expression and feeling of awe, wonder, amazement, and utter joy in their faces and countenance.

In the book of Mark, Mark writes of Jesus saying “Let the little children come to me; do not stop them; for it is to such as these that the kingdom of God belongs. 15 Truly I tell you, whoever does not receive the kingdom of God as a little child will never enter it.”  I was thinking about this sense of Awe that the children seem to have when told that God and Jesus loves them as I read this scripture the other day.

The church seems to use this scripture a lot for advocating the presence of children in church.  Having them in the service, having education ministries for them, having faith based activities for them so that they can ‘come’ and so on.  Children are important!  Let me say that again CHILDREN ARE IMPORTANT!  Having ministries for them and ways for them to be present and part of the church is important.  Ways for them to learn about, and come to know and love God and Christ are vitally important to them and us as adults but I wonder if that was truly what Jesus was saying.

Again, I think of the innocence and the awe at which my students take the information that they are loved by God.  That they are LOVED by Jesus.  They don’t try and quantify it, they don’t try and negotiate it … they don’t say God will love me if I such and such happens … or if I do blah  … they just accept it with the innocence that comes with Childhood.  With the raw faith and acceptance that comes with being a child.  In the scripture Jesus says “Truly I tell you, whoever does not receive the kingdom of God as a little child will never enter it”.

I remember in my youth having a conversation with someone who was convinced that this meant that you could only enter the kingdom if you came to God as a child, that you could only be a true Christian, you could only go to Heaven if you came to believe when you were a child. Taking the words exactly as written, word for word but not as I think they were intended.   I remember thinking that that made no sense whatsoever and certainly did not jive with the loving God that I had always been taught about.

Part of the joy of being adults is having greater an understanding of things but sometimes, that deeper understanding, that desire to know more, and question things makes it harder to just accept.  We need to take in the knowledge and love of God as a child would.  Not try and argue it, not try and quantify or qualify it, just accept it.  Feel it as a child would.  Know it and see the awe in it.  Accept that we are beloved by God no matter who we are, no matter where we are in our life or our walk with Him, and no matter our faults and flaws.

Jesus loves you.  Take that in… God loves you …don’t think about it feel the childlike joy of knowing that you are truly and utterly loved.

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You ever wonder why it is so hard for people to be honest?  Honest with themselves, honest with others…just all around honest?  We lie through half-truths, through ‘little white lies’, we tell ourselves it is for the better, but is it?  Does it ever truly make things better?

Why do we lie to those we love, those we hate, those we don’t even know?  Why do boys and girls (or girls and girls, boys and boys, whatever) who like each other lie to each other?  Why do we lie about our feelings?  Why do we lead people on?  Why do we pretend that people mean more or less to us than they do?  Why?

What are we trying to achieve through these types of lies?  Why do we lead people on, saying we don’t know when we do?  Saying we don’t care when we do?  Saying we do care when we don’t? Do we think that it’s better this way…and if so for who?  For us?  For them?  Who is it really better for? 

I think no one.  I think we lie because we are scared.  We lie because we are unsure.  We lie to not damage a friendship…because that always works so well <sarcasm>.  We lie to not loose someone.  We lie cause it’s ‘easier’…but is it?  Lies come out.  The truth wins and in the case of lies the truth may win but everyone else loses.  Friendships are damaged…friendships are lost.  Relationships are ruined…or damned from the beginning because they started with a lie.   

It’s hard but wouldn’t it just be better to be honest to say hey I like you or not.  To say we’re confused.  To say yup I messed up and I’m sorry.  To say let’s move on, to not drag something that’s broken on because you don’t want to let go, because you don’t want to be truthful.

How do we know when somethings a lie?  How do we know when it’s a lie versus us just miss reading the situation?  How do we know the truth?  What is the truth?  They say that two people witnessing the same scenario will see it differently…does that mean one is lying and one is being honest?  How do we know what is real?  What is true?  What makes a lie a lie?  What makes the truth the truth? 

So many questions in this world and so few answers.  So few absolutes. 

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I have spent a lot of time over the past couple of years considering writing this and due to the realities of our world I don’t. I feel the fear that comes with the stigmatization of mental health. I started fighting that fear a few years ago. I finally accepted my own anxiety issues and began admitting them not only to the outside world but more importantly to myself.
You see for a large part of my life as I was growing up my dad tried to get me to admit and seek help. This always caused a battle between us, as my words often offended him as his offended and scared me. He’d label me as depressed, or manic, or he didn’t know what but he saw the struggles. He saw his child who hid from people in a large setting, saw his child who was up and down emotionally, who had a temper that was explosive and got her in trouble. I don’t think he saw the child who was just hurting because of the words she heard from the people in her world.
He didn’t see the child who was effected negatively by always being the new kid. By being the one who didn’t fit in and who was teased mercilessly by the other kids. Whose own friends occasionally got in on the action because that’s the life of a teenager.
As I was growing I heard, accepted, and internalized the wicked and hurtful things that were said to and about me. Those voices, those words became my internal voice. Nearly two decades after those evil words have mostly stopped I still hear them. I hear them in every unanswered text or message. I hear them in the seemingly ignored posts. I hear them when spending time with friends…thinking thinking thinking, second guessing everything I say and do. Wondering if they really want me around or if they’re just pitying me.
Even when being told that I am amazing, that I am loved…I hear the voices telling me this can’t be true. That those saying that just want something from me. A part knows that’s not true but the voices from the past can be so much louder than the ones in the present.
Those voice cause me to be anxious in a crowd. They cause me to be anxious whenever doing anything new. They make me afraid of new people, and old friends, afraid of what they are truly thinking.
They cause issues of depression. They cause me to think that I am worthless and unloved. They cause me to feel like everyone would be better off with out me (a piece of my brain always kicks in right here screaming that the voices lie, it’s quite a battle between the heart and the head). When I make mistakes it’s like I’ve ruined everything and made things 100 times worse than even humanly possible.
I am learning to love myself, I am learning to ignore the voices of my past, the voices that LIE to me. I know that in the moments that the voices are screaming myself doubt becomes trying, but know that I am trying. I am fighting it with all that I have and am and I will win.

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This is a topic I’ve thought a great deal about over the last few years. It’s interesting how this term has seemed to change since I was in school. I was wicked picked on but at the time would never have considered myself bullied because bullying was only seen as physical when I was in school. Looking back today I would apply it and would say that how we treat people has a lifelong, lasting effect on how a person grows and who they become.
Growing up I was perpetually the new kid. I went to five elementary schools from kindergarten through 5th grade moving mid-year in first and third grade. I was lucky to attend only one junior high but went to five high schools. Again moving midyear in my freshman, sophomore, and senior years. As a kid and teen I was heavy, wore glasses, had braces for a number of years and was just as much an introvert then as now. I also had a temper and wore my heart on my sleeve so I was fun to pick on. It was easy to get me to react and even when I tried not to it only lasted so long before the explosion was even more glorious than before. I went home many a night feeling like I was useless, stupid, and hated by all. Like there was no point in my existing in the world if my only purpose was to be a punching bag. I learned to slink into the shadows and do everything in my power to be as invisible as possible. I was angry and distrustful of people’s actions. I could go into details of friends mooing at me, people saying things just cause they knew it would hurt me or piss me off, of the teasing and tears but that’s not the point. So what is?
A few months ago I saw a meme, sadly I can’t seem to find it again, talking about how we all need to just pull up our big kid pants and realize that bullying was just part of life and not that big a deal. I’ve been unable to get this idea and how wrong it is out of my mind.
A few weeks ago I was at a company event and at the end all my co-workers were dancing and having a grand old time I sat back smiling and enjoying watching. Wanting to join in but also fighting the terror of what people would think if I did, fighting the terror of drawing attention to myself. One of my coworkers came over and pulled me out, I made numerous excuses and fought against that tugging hand. At the same time I appreciated it. I appreciated being allowed to be part of the group and realizing that it was ok.
As I thought about this and my reaction I wondered if I would be the socially anxious and scared person I am.  Always afraid of what people will think, saying the wrong thing, and what will happen if I’m brought to others attention.  I am fighting to break out of the protective box I created for myself but it’s hard work.  I don’t want any child, any human being to feel the way I felt growing up.  To struggle to find their own self worth.

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My father died 11 days ago.  That is such a weird sentence to write.  I always knew that I would lose him and it likely wouldn’t be in his 80’s or 90’s but never thought it would be at only 67.  My father spent the last decade and a half of his life battling various health issues some due to genetics, some due to his weight, and some just to the luck of the draw.

Almost a year ago we found out that he had liver cancer and after much testing that in his case it was terminal…there was a lot of time spent on what does this mean.  Will he die tomorrow; in years, weeks, months…what?  After conversations we resigned ourselves to the idea that he would most likely be gone by Thanksgiving maybe Christmas; he would not see 2017.  He did he saw 14 days of it.

Over the nearly a year that he battled cancer the greatest sign of him being sick for many many months was that he lost weight and strength.  In the last months of his life his brain went from being a slightly leaky pot to a severely leaky sieve.   He lost track of time, forgot how to do many of the normal things in life, he forgot much.  He never forgot his family and he never forgot that we loved him and he loved us.

The last time I saw my Dad he could not carry on a conversation but he knew who I was and responded to my ‘I love you Papa’ with ‘oh, love you to kiddo, bunches’ in a quiet voice.

Many years ago on the night before my Dad was ordained to the transitional deaconate my sister and I gave him a father’s day/ordination present that was a small white beanie baby bear.  The bear was made as an honorific to the late John Paul II.  Its tag read:

“Teacher, Writer, Father, Friend

Your Love for us will never end

Throughout your life a light did shine

On acts of kindness to all mankind”

To us it was the perfect gift for our father who had always been those things in our life.  As I look back on his life and listen to people who knew him talk I realize how much those words apply to his relationship with others as well.  He never truly knew how beloved he was or how highly many thought of him.

My sister and I often talked about how our Dad had changed when he went to seminary.  My dad was ALWAYS an amazing father and a good person but he was a little (okay a lot) more rough around the edges when we were growing up.  You could see more of the man who spent six years in the Navy living on a ship with a bunch of rowdy sailors, causing trouble and getting away with it because he was GOOD at what he did, at least as he always told it. 🙂

Growing up my Dad would always go to bat for my sister and I with our teachers.  God forbid a teacher did something he found unjust and sent a note home for him to sign.  I loved it!  I remember once a teacher gave the whole class detention because a handful were being disrespectful and rude to a sub, her reasoning being that we should have made them stop.  When she handed the notes out telling us to give them to our moms to sign (mom traveled and was away) I walked up and asked if I could give it to me Dad.  (Yes, I was and am a smartass) She said yes and I remember grinning and she looked at me questioningly and I remember basically saying that this should be fun, and that he won’t like this.  When I gave him the form he signed it, not on the designated line but after a paragraph explaining that I wouldn’t be staying and what he thought of her teaching methods.

My dad adored my sister and I and we were both pretty good at getting what we wanted from him, he hated to say ‘No’ to us when we were little and he hated when we were upset.  If we wanted something at the store generally a simple “look, Daddy, that’s neat” or a “Can I have this Daaaaddy, Please” got us what we wanted with mom shaking her head in the background.

I remember styling his hair with our clips and hair ties; he would just sit there and let us, a small smile on his face.  I remember asking him once if he ever wished my sister and I had been boys and him telling me he wouldn’t trade us for the world.

I remember being goofy with him, I remember the first time I made him laugh with a joke I made up on the spot, I was so proud of myself as I shouted “I made a funny” which made him laugh even harder.

I remember him making fun of the people getting out of their cars to watch the mudslide as we sat on the highway stuck.  The running commentary, the voices as he pretended to be them had my sister and I rolling in the backseat and my mother wondering about all of our sanity.  She often seemed to be wondering about his sanity in the sillier moments.

I remember when my Dad would ground me it never lasted for more than a few hours, at most a day and that was rare.  A simple “I’m sorry Daddy” with a smile and a hug rectified everything…unless of course you were lying than you were in more trouble.

My Dad taught me to play chess with the pieces he made and the board my Grandpa Don made as a wedding gift for him.  I loved that time with him.  He NEVER let me win and therefore to this day I’ve never won a game of chess against him but oh how I loved that time with him.

As I grew older I loved to just sit and talk with him, politics, history, and religion were some of the best things to debate, discuss, and learn about with him.  I remember in high school we were talking about something that I had recently learned in history class and was arguing with him, RUDELY, and he got frustrated that I wouldn’t just Shut-up and listen and threw the couches decorative pillow at my head.  Mom wasn’t too happy when it grazed me and hit the lamp…let’s be clear she was upset about the lamp, me I was being a Shit and deserved it.  I often teased him in my adult years about the time he threw a pillow at my head.

I learned a lot just talking to my Dad, he knew a little about a lot; as well as a lot about a lot of various things.  He had a thirst for knowledge and was always reading and seeking out knowledge.  I learned to not just go with what everyone else says from him but to formulate my own opinion.  I’ve learned about a lot of odd things and read many a book that I wouldn’t usually read because I didn’t want to just jump on the hate bandwagon but formulate my own opinion and ideas as he taught me.

This idea of knowing what you think especially applied to faith.  Dad and I would spend hours discussing religion and faith, he often played devil’s advocate challenging me to not just say ‘yup I believe _____’ because others did but to understand and know.  We did not always agree and I know he, generally, respected the fact that I didn’t just spout back his beliefs any more than I would someone else’s.

I miss him, I would give anything for one more conversations, one more Chess game, one more hug, and especially one more Je t’aime!   Je t’aime is I Love you in French.  Growing up Dad would speak to us in French sometimes, just to be silly mostly but it made me want to learn French so I took a couple years in high school, my French is at about a 2/3 year olds level I would guess.  When I learned that Papa was basically the French equivalent of Daddy he became Papa.  When I was an adult and my folks and I were in a shared household for a number of years due to his health issues a tradition emerged.  Every night I would knock on his door and say “Je t’aime Papa.  Bonne nuit.” on my way to bed.  He responded with “Bonne nuit, je t’aime aussi … beaucoup” or some variation thereof.

I could go on and on talking about the amazing man that I called Dad, Daddy, & Papa.  He had his flaws like all people but he was also a good man and a great father.  I consider myself blessed to have been raised by him.  To have learned from him and been shaped by him into the person I am today.  As a child he was my hero and in many ways my closest allie in this crazy world, as I grew older I saw more of his tarnish and flaws but still was often awed by him.

Je t’aime et bonne nuit Papa.

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