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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.

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Grief isn’t logical. Yesterday was three months since my dad passed, yesterday was also Good Friday. My uncle died, 5? years ago, on Good Friday. Jesus died on Good Friday and came back to life. I’ve been teaching my class about this great miracle all week, repeating the words Jesus loved us so much that he died for us but then God brought him back. He spent time with his friends and then went to heaven.


There’s this voice in the back of my head that says it’s not fair. Why can’t my Dad come back so I can hug him one more time, tell him I love him one more time. Why can’t my uncle come back so we can say all the things that we’re left unsaid.

As I said grief is illogical. I know these thoughts are silly and don’t make sense. I know that comparing the situations is dumb but your brain does it’s thing in and in my grief I just want that moment more with the people I love and miss so much.

I thought I understood grief after loosing all my grandparents, even after loosing my uncle with unfinished business but I knew nothing. My dad and I have nothing left unfinished except that he’s my dad and I wasn’t and am not ready for him to leave me yet. There are things he supposed to be here for, little moments like silly conversations and big moments, life moments.

Grief is illogical and it sucks!

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“Light up your face with gladness

Hide every trace of sadness

Although a tear may be ever so near

That’s the time you must keep on trying

Smile, what’s the use of crying?”

WHY? Why do we tell ourselves this? Why can’t we just embrace and feel the sorrow instead of putting on a happy face? I don’t understand it.

I teach my students to understand and identify their emotions, that it’s ok to feel what they feel and yet as adults we have to put on a smile and only ‘feel’ (i.e. Show) happiness. You must answer the question “how are you” with GOOD or great. I’m ok isn’t enough and God forbid you’re “fine”. It’s bull&@$t!

We were given all the feelings, we’re allowed to feel them, to process them, and maybe we’d be able to do the later better if we weren’t always forced to pretend.

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Why do people have to be so hateful?  If you spend any time on social media these days is mostly someone b$%#@ing about what someone else does or doesn’t believe.  If you’re a Christian than you are a mean nasty person who believes that everyone who doesn’t live the way you do is going to hell.  Then there’s the whole right wing /left wing christen thing where they all seem to think the other side is going to hell.

Supposedly to all Christians non-Christians are evil, wrong, and damned.  Of course to all non-Christians Christians are hypocritical sh@#s who don’t care about anything but convincing them that they must change and be like them.

I watch all this crap.  I watch as friends (Christian, Pagan, agnostic alike) all have moments when the bash on someone else’s beliefs and just want to shout “Can’t we be friends”.  I hate it when I read something a friend writes in attack of a stereotypical Christian belief, a belief that isn’t actually all that accurate, a belief that I don’t actually know a single Christian who actually believes that way.  I feel the same frustration when I see other beliefs attacked, when I see post about how Wicca is devil worship or other Evils that are perceived of Pagan faiths.  Evil believed of any religion or faith that is not founded in fact frustrates me.  So often if you do a modicum of research (I don’t mean searching Meme’s or Wikipedia but actual research) you find that much of what the world is fighting over is bunk, it’s misunderstood, misinterpreted beliefs.  It’s the junk that the minority of people spews as fact but is actually made up garbage to insight fighting for God knows what reason.

I wish we as a people could just find a way to go out into the world in love and caring, instead of judgment and hate.  I am a Christian and there are times when I want to run from that word because of what it has come to represent for so many.  Instead of representing a loving caring God and people it seems to represent so much hate and anger.

I try so hard to live my life by two simple rules, “loving God” and “loving people”.  I’m not perfect (so so far from it) and I fail sometimes (ok a lot)  but the reality is in my mind the latter is what the world needs most.  It needs people who will just show love and kindness to one another regardless of our differences or similarities.

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Yesterday a friend in a group on Facebook posted about a video that was posted by a Comedian named Nicole Arbour entitled Dear Fat People. I was saddened by the fact that this persons attempt to be funny had hurt someone I cared about but thought nothing more of it. Throughout the day I saw the same reply post shared by many of my friends. A reply that was well thought out, honest, and mostly kind to those of us who fight with our bodies and body image as larger people. At this time I also came across Ms. Arbour’s video and my only thought was “Wow, what a Bitch” and “She really doesn’t get it!”

Fast forward to today when another friend shared yet another video in rebuttal to the original, shaming Nicole as well as Fat people. Where the original video had little effect on me, this one did. It left me in a huddle mess sobbing and feeling like a useless bundle of fat. As anyone who knows me knows I have battled with my weight my entire life, I have always hatted my weight but rarely hated myself because of it. I hate that a stranger talking to an anonymous audience had this effect on me.

All this emotion has led to this posting, one I need to express how I feel so that it doesn’t fester and grow into something else, and two I want to say that appearance has nothing to do with who you are inside. I hate that we live in a society that puts so much emphasis on how we like. Telling girls, and guys, that if you aren’t a specific size, if you don’t have a six pack…if if if … then you aren’t worth anything. This is BULL SHIT!!! A person’s worth has nothing to do with outward appearance and everything to do with the kind of person they are. So please remember that whether you are a size 0 or a size 20. You are important in this world and what you do, who you are, and how you treat people is more important than anything else!

Now to work on getting myself to remember and believe these words. Do as I say not as I do…for now.

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The following started as an e-mail explaining ‘Always Keep Fighting’ to someone I love and in reviewing it I realized that it’s a good explanation to all who’ve asked the question of me as well.  So as a step in helping to remove some of my own fear of the stigma surrounding my own mental health issues and to educate those in my life here goes.  Some of me open to the world…be kind!

I’m writing this in hopes of helping you understand the ‘Always Keep Fighting’ stuff and why it’s so important to me. First, I know that many of my friends and family don’t understand my enjoyment and fascination with the show Supernatural and that’s ok but my interest in “Always Keep Fighting” has nothing to do with my interest in Supernatural. AKF just happens to have been started by one of the stars of the show and was therefore put in my purview. I do find it interesting that my resurgence of interest in the show and entrance into Fandom happened just as the campaign started, I wouldn’t have known about it otherwise. But again, the two have nothing to do with each other, other than SPN bringing AKF to light for me.

So what is ‘Always Keep Fighting’ really about? It’s about bringing awareness, and acceptance to the reality of mental health issues, removing the stigma that makes people hide in the corner and not seek help. It’s also become about creating a support network for people who live each day with these battles. Where the campaign started to raise awareness and funding for charity it has turned into a support group and a family of sorts.

As for why it’s important to me… all my life I’ve been told that I was depressed, or manic, or whatever and all my life I’ve fought the people who’ve told me that for so many reasons that I can’t really explain anymore. Long about the time that this campaign began I began to realize that Yes, I do have some issues. At this time I also started to do some true soul searching as to who I am. I am, at my worst, an anxiety ridden mess who can see the worst in any situation. An introvert, who’s shy and extremely unsure of herself, and who has severe social anxiety just to round out the ‘I don’t like people” (not literally) trifecta. Meeting others in this crazy fandom and through the Always Keep Fighting campaign, the AKF Family as it’s lovingly referred, has helped me to accept my own issues and realize that I need to fight through them. It’s also helped me to realize that I am far from alone in these struggles.  And for me that’s not only fighting with the anxiety and mild depression that comes with the Meniere’s, but the Meniere’s itself, and all my other quirks. I’m worth fighting for! When I was little my Dad would strive to comfort my self-hatred by telling me that ‘God don’t make Junk’ and this ‘thing’, this support network, this family had helped me to start believing those words for myself.  They’re there when I’m scared, sad, or panicing necessarily  and unnecessarily.  They help me to remember that I am not alone, I am enough, and to always keep fighting.

If you’re part of my family or my friends and you really don’t understand it that’s fine but please don’t poke fun and please try to accept the AKF idea, because for me as it’s something that is helping me to accept myself, faults and all.  I would also encourage you to ask me more about it, this ‘campaign’ has quickly become and important and formative part of who I am and my work to become a better and more confident version of me.

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