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Vestibular: What’s that?

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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Below is the Sermon I preached on Sunday February 11th at St. John’s Episcopal Church in Kirkland, Wa.  This was the first time I’ve ever done this and it was an amazing experience.

My Sermon is based on the following Gospel reading from this mornings lectionary.

Six days later, Jesus took with him Peter and James and John, and led them up a high mountain apart, by themselves. And he was transfigured before them, and his clothes became dazzling white, such as no one[a]on earth could bleach them. And there appeared to them Elijah with Moses, who were talking with Jesus. Then Peter said to Jesus, “Rabbi, it is good for us to be here; let us make three dwellings,[b] one for you, one for Moses, and one for Elijah.” He did not know what to say, for they were terrified. Then a cloud overshadowed them, and from the cloud there came a voice, “This is my Son, the Beloved;[c] listen to him!” Suddenly when they looked around, they saw no one with them any more, but only Jesus.

As they were coming down the mountain, he ordered them to tell no one about what they had seen, until after the Son of Man had risen from the dead.

Mark 9:2-9 New Revised Standard Version

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There were two things that stood out to me as I read through this mornings gospel.  Firstly, the idea that Peter, James, and John were TERRIFIED by the transfiguration of Jesus and secondly the words from on high saying ‘This is my son, the beloved, LISTEN TO HIM!’

As I read through the scripture this week, did my subsequent research, and pondered it’s meaning there was one thought that kept coming back to me … the idea of stepping out of our comfort zones.

Peter would have been most content to stay there on that mountain top with Jesus and his friends.  To build dwellings for Christ, Moses, and Elijah and stay put.  He would have loved to not have to come down from the mountain and do the DIFFICULT work that was to come next.   As much as he was frightened in that moment I believe he was more afraid of what was to come.  It was more comfortable there, doing what they had been doing, all this time with Jesus.

Comfort zones are great!  We like them, I love them.  We know what to expect and how to behave but nothing changes, nothing grows, nothing gets better.  Instead it often gets stagnant and stale.

Obviously, I will be the first to admit that the comfort zone is nice, but I also realize that I would not be the person I am today if I wasn’t shoved out of it, usually kicking and screaming, more than once in my life.

When I went to Covenant Players, when I take on new challenges, and leadership roles in every environment of my life, every time I’ve had to get up in front of a group of people to speak  – It’s been uncomfortable, but it’s also been this amazing time of growth, stretching me, as a person, as well as my faith.  This need to stretch, and grow is not just for people individually but communities as well, one’s personal growth can also help grow the communities around them and vise-versa.

Thinking back to three years ago, when I decided to go back to teaching, I promptly messaged my old boss to come in a talk with her.  I had planned to go back to what I knew, what was comfortable no stretching, no growth, no discomfort required.  I think about what I would have missed out on had I not listened to God as he pointed me in another direction.  I would not be at the amazing school I am, with a staff that supports and challenges me and each other every day.  I would not have met a little boy who desperately needed someone in his life to love him unconditionally and guide him, or at least would not have been able to steer his family towards our school and the environment he desperately needed; an environment I needed.   It was challenging, it still is, and it was hard, and it was hugely uncomfortable, but it was what was needed and what I was told to do.

Here I come to the second part of the scripture that stands out ‘LISTEN TO HIM’.  ‘This is my son, the beloved. Listen to him’. I get that this is hard.  I am a 2 x 4 to the head kinda person when it comes to hearing, and following what Jesus is telling me to do.  The idea, the instructions, will come and I will have to watch as everything slowly falls apart on my way in the opposite direction before the 2 x 4 hits me smack across the head and I go ‘OH, that’s what I am supposed to do’ or ‘Ok, I’ll listen’.  Usually the latter, as like Jonah I am usually running away.  I’m working hard to listen before the 2 x 4 or giant fish moments.

As I contemplated all this I kept thinking about St. John’s and all the change we’ve been through over the past few years and all the change that is coming.  Over the past few months we’ve had staff changes, we’ve had program changes, and so many other changes all of this takes us out of the comfort zone.  We are being lead into the new and the unknown which can be amazing but terrifying.

I think that we are being pushed out of our comfort zones to grow, and change, and be something new as a community of faith.  As we stretch to meet the changing needs of the community around us we have to do things in a new way, which can be exciting but new is often uncomfortable.

We are heading into a huge time of change as we look for a new rector.  This is a time of uncertainty.  This is a time to ‘Listen to Him’ and to do all that we can to hear what God is telling us.

As we head into Lent, a time of change, I challenge us to keep this scripture in mind.  Lent is a time of heading from comfort into uncertainty for the disciples and for us. I would challenge us all to look to what we are being called to do.  To ‘Listen to Him’ and step out of our comfort zones, where we will be stretched, and we will find growth.

Too many feelings

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.

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.

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. 

This is another one of those things I’ve contemplated writing a couple of times over the past few years.  Started, stopped, and deleted more times than I can count.  It’s another one of those things that the fear of reactions and stigma keeps me from doing.

Many of the people in my life know that I have Meniere’s disease; many do not for fear of misunderstanding of what it means.  When you tell people you struggle with balance they either laugh and make a crack about being drunk or worry about how safe you are doing what you love.  They also look at me and out come the ‘you don’t look sick’ thoughts, when you say you have a chronic illness they expect you not to be able to do things.  I work a full schedule, heck I work around 50 hours a week, I volunteer, and recently returned to school.  7 years ago I could barely get out of bed.  I thought my world, my dreams, my ‘everything’ was over.  I was 29 years old and I thought I would never live a ‘normal’ life again.

As I’ve watched my Facebook memories be inundated with the beginning of my journey with Meniere’s I’ve marveled at how much things have changed.

At this time seven years ago I didn’t know what was wrong with me other than yet another ear infection that seemed to be causing sever vertigo and dizziness and that I was quickly losing my hearing in my left ear.   If it hadn’t been for the hearing loss I would have been sent home with a ‘yup, being dizzy sucks but it’ll get better. It may take weeks though’.  I was basically told this but when I commented again on the feeling that I couldn’t hear anything out of my left ear hearing test happened, one after another as my hearing got worse and worse, going from an 8% loss to an 80% loss in a couple weeks.  A loss that has never returned, it occasionally fluctuates to slightly better and slightly worse but has not and will not return.  I spent the next few months of my life getting tests.  The original thought was a tumor…when my MRI and CT scans were all normal we talked with my doctor.  The first words out of my families mouth was “is this Meniere’s, Grandma has Meniere’s”.  The problem with Meniere’s is it’s usually a diagnosis of elimination.  They test for EVERYTHING else first, but luckily these words led to testing and a diagnosis, a diagnosis that takes most years only took me months.

Of course knowing what was wrong didn’t make it all better.  It meant medications to help manage but it also meant constant light dizziness and at least weekly ‘teacup moments’ as I began to internal refer to the days that felt like a teacup ride.  There’s nothing like nearly falling over cause the room is spinning so fast around you as you just stand there.  I’ll always remember my bosses kindness at first that turned to frustration, my co-workers disgust as I have to leave early, again, clinging to my mom and just praying to get to the car, my room, and my bed…praying that I don’t puke or pass out in the process.  Some of the people I worked with were amazing, compassionate and caring; most thought I was faking it because in general I didn’t look sick or they didn’t understand the idea of chronic illness.  I fought so hard to hide it, for normalcy, but also Meniere’s doesn’t always look like clinging to someone desperately as I pray the room will stop spinning.  Often it looks like a steadying hand on a wall, a slower movement, stiffer body as I strive to move my head as little as possible not wanting to wake the lightly sleeping dragon that can destroy the world.  This was my life seven years ago and for many years after.

I woke every morning terrified about what would happen when I sat up, when I opened my eyes.  I lived in fear of the dizziness and in utter terror of the vertigo (there are totally different things!)  I was positive that my ability to work with kids was over, that my life was over, and that at 29 I was done.  I spent a lot of time curled up in my bed waiting for the world to stop spinning, laying in the dark in tears as my life passed me by.  But things got better.  Meds that worked were figured out, I figured out what movements were ok and which would power up the tilt-a-whirl.  You will never see me spinning around, or lying on the ground looking up at the sky, you won’t find me looking up period, not looking down from a height.  I close my eyes a lot when watching movies, especially in the theatre, now a days as the popular rapid movements are my undoing.  Flashing lights, especially strobes, are EVIL!  I know these things and I avoid them but unlike seven years ago they don’t send me into an immediate tail spin anymore.

The thing is I still have a chronic illness, there are still days where I wake up and the room is spinning around me.  I take appropriate meds and when I can curl up until it goes away.  I occasionally have to back out on extra activities but have not had it affect my ability to go to work, to do my job in YEARS now.  There are those times when the people who know me and have gone through this journey with me watch as my hand slides along the wall and they check in but usually I’m ok, I’m struggling for a straight line but that’s unusually all.  All of this has made me think about what it means to have a chronic illness.  I will forever have Meniere’s, unless a miracle cure is developed but since they still aren’t 100% sure what causes it I don’t see this happening in my life time, I will forever have off days, and will forever have things that I can’t do, or at least have to think about like when I went on the rides at Disney with my niece and nephew or showed a little girl how to do a pirouette.  It will always be a part of my life but it won’t end my life.  It won’t take away my ability to do what I love, and what I do well.  I refuse to live in fear of the bad days; I refuse to live in fear of what might happen.  I may have Meniere’s but I am fighting for it not to have me.

PS: As so often happens this went in a different direction than originally planned.  This whole things came to mind again of the FB memories but also because of another blog I read about being Chronically ill entitled “Too functional to be Chronically ill but too sick to be healthy”.  It made me start thinking about my own illness and how much things have changed over the past few years.  I’m not 100% healthy and there are things that I am limited on but at the same time I’m doing pretty stinkin’ awesome most days.  I have jobs that I love and am living my life but I also have days when I need a down day.  I need a day where I’m not expected to do anything and times when I need to remind myself to not overdue it.

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.