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Archive for the ‘The Girl I Mean to Be’ Category

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.

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As of late I have found myself explaining, defending, not sure what word I want to use here, a growing interest in the show Supernatural and its fandom. I’ve been a ‘closet’ fan of the show since it first aired ten year ago. I instantly fell in love with Sam and Dean, not just because they are insanely hot, but because of their desire to do the right thing even when it truly sucked to do so. After Angels and God came into the show in a disagreeable manner to many Christians I continued to watch the show but spent much time explaining to my Father, a priest, why it was a good show and why I liked it. After a few seasons of this I watched in seclusion enjoying my fictional fix of insanity, hunkyness :-), and most of all the continued struggle to do what is right in the face of harrowing odds.

About a month ago I came across a convention video for the show that intrigued me, then an interview with Misha Collins about his not for profit Random Acts (http://randomacts.org) and GISHWHES – Greatest International Scavenger Hunt The World Has Ever Seen (https://gishwhes.com) and was amazed by the heart this man has and how he strives to do something so good and kind in the messy screwy world we live in. Not long after this I started joining fanpages and the two main actors on the show Jensen Ackles and Jarred Padalecki joined facebook, as any blithery ‘fangirl’ might, I quickly followed them. Curious not only about the characters I had come to love but the men who portrayed them. Throughout the fandom they are represented as kind, down to earth, and genuinely grateful and caring of their fanbase. (From all that I’ve seen thus far, this is true)

As I found myself more and more entrenched in the fandom and more and more intrigued by the men behind the characters, Jared launched a campaign (https://represent.com/jared) to raise awareness for depression and mental issues. Striving to not only raise monies for a worthy charity but also to remove some of the stigma that surrounds those who are depressed or any of the myriad of other mental issues that are stigmatized. As someone who has dealt with anxiety issues most of my life, unadmitted to all but my nearest and dearest until this moment, I felt drawn to the campaign. I have known many who fought depression, cutting, and suicidal thoughts in my life. People who like me hid what was happening to them, afraid of what others would think, do, or say in response to them not being ‘bug free’ as my Dad often put it in his fight to have me acknowledge my own issues. Recently Jensen joined Jarred in this endeavor (https://represent.com/jaredjensen) and I am again awed and inspired by what these men are doing with their fame and the fandom that rocks and rules over all others.

Throughout all this I’ve become even more entrenched in the Supernatural fandom, a group of practical strangers with one definitive thing in common, the love of Lucifer and the King of Hell and the understanding that some Angels are Dicks. (It’s a show people not reality, no I don’t literally love Lucifer, nor do I believe that God is actually a bad writer named Chuck, my faith hasn’t changed, my beliefs haven’t change due to the enjoyment of a wonderful and entertaining work of fiction). As I watched Con footage I was intrigued by the constant referral to the Supernatural fanbase as a family. One of the tenants of the show is that “family doesn’t end with blood”. I’ve been floored, touched, and astonished by the support of these people, these strangers, as they strive to support one another, lift each other up when they are down, and now like the actors that they love to watch, encourage each other to Always Keep Fighting!

Jensen Ackles, Jared Padalecki, & Misha Collins

This show, this fandom, and these men, Misha included even though he’s talked about the least here, have reminded me of the importance of fighting for life. Fighting to see the good and the kindness in our world. They’ve reminded me that even though life may not be perfect and blissful at all times it is always worth fighting for. There are truly amazing, kind, and loving people throughout this world and your life can be enriched by them if you just take off the blinders and look around. In many ways I am at one of the best places in my life, mentally and emotionally, because of the realizations that came from a TV show, it’s inspiring stars, and wonderful fandom.

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Every year I watch and read as so many of the people in my life post a daily list of the things that they are thankful for throughout the month of November leading up to thanksgiving.  Every year I think what a cool idea, I should do that.  And every year I get too ‘busy’ doing other less important things.  This year I strove to do this daily, sometimes I managed, sometimes I posted many at once, but I basically accomplished my goal.

Here is the whole list just for the fun of it.  Don’t forget to give thanks for the many wonders of this life.

  1. I am thankful for all of my family.  I am thankful that I have been lucky enough to have a family that genuinely likes each other.  Holidays were never a matter of bouncing between houses, or seeing one half one year and the other the next.  They were always just a matter of who’s hosting and everyone whose local gathering.
  2. My Grandma Helen was an unusual lady, who I adored.  I had no idea what a strong woman she was until a few years ago.  I am thankful every day for the years I had with her and the opportunity to get to know her as a child as well as an adult.
  3. My Grandpa Hap was larger than life.  One of my favorite people.  So many of my childhood memories involve him; working in his ceramics shop, building doll houses, taking us to the ‘beash’ (aka Beach), showing Jess and I off to his ‘old cronies’ at coffee when we visited, trips to the Lock’s or just hanging out being silly.  He was the kind of grandpa everyone wants
  4. My Grandpa Don was awe-inspiring in a lot of ways.  He probably was one of the smartest most educated men to never go to college except some secretarial school.  He was clever, always inviting something to make life easier.  He challenged me to think, speak right using just the right word whenever possible, and be curious about the world.
  5. My Grandma Evelyn is my last living Grandparent.  She’s nuts, she’s funny, she kind and has one of the largest hearts of anyone I know.  She occasionally drives me nuts but I wouldn’t trade her for anything in the world.
  6. Today I am thankful for my Aunts and Uncles, especially my Uncle Steve.   He was a funny guy.  He had his problems but he always made me laugh and let me just be me.  When I was 12 my Grandfather had open heart surgery and I was terrified, so was he, but he but so much effort into making it Ok for me.  This is just one of the many many reasons I am thankful for having had him in my life.
  7. I have many cousins.  Some are children of aunts and uncles and some are there children, I am thankful for all of them.  The funny memories from the children as they have grown up and the caring hearts of the adult ones.  So many aspects of my adult life were better because of my cousins Shannon and Sandy, and my ‘honorary’ cousin Joe (Sandy’s Husband).
  8. I am thankful for my beautiful niece and handsome nephew.  They amaze me on a daily basis as I read stories of their latest accomplishments.  They are super smart, funny, and amazing little people.
  9. I don’t know what I would do without my big sister Jessi.  As we grown-up she has gone from being my favorite verbal sparring partner to my best friend.  She has and is my confidant, the one person who can always break me out of a funk with an inappropriate joke to make me laugh.  We can talk for hours about the nothing and everything.   I love you Jess!
  10. I am beyond lucky to have the mom I have.  Even when I am at my worst, I know she loves me.  She lets me ramble on about the most random of things, working out situations as I talk, listening, and offering her sound advice when needed or just quietly listening.  I know she has to occasionally wish I would just stop talking.  She is always ready for a needed hug and comforting words.
  11. I am thankful for all of the people who fight and have fought for the safety of our country.  My Great Uncle Byron served in the Army during the Korean War, My Grandpa Hap De Shaw was in the Army in Okinawa during WWII, and my Dad ‘played with missiles’ (my silly phraseology for the serious work he did) in the Navy during Vietnam.  My Brother-in-law Brandon is currently serving in the Air force stationed in Japan.
  12. My Papa is the best Daddy in the world.  We don’t always see eye to eye and we don’t always agree with one another but I always know that he loves me and is glad that I am one of his daughters.  I love that we can have random serious conversations about random topics; he takes me seriously when I ask him for his opinion or information about something.  Bonne nuit et je t’aime, Papa.
  13. I think often about the opportunities for learning that are open to me, and I am thankful that I live in the day and age that I do.  I am thankful for all the years of education that I was lucky enough to have.  I am thankful for the opportunities and options to further my education and do whatever I want to in my life.
  14. To go along with yesterdays thanksgiving for educational opportunities I am thankful for the many superb teachers that I have.  The teachers that bring to mind allusions to ‘great’ movie teachers such as Mr. Keating and Mr. Holland.  There are many that fall under this heading but the one at the top of the list, the one who shaped so much of who I am, is my Junior High Music teacher Mr. Joe Beneschan.  He challenged me as a musician, a Christian, and especially as a person.
  15. As a dorky book worm I am thankful all the marvelous books that are out there to explore.  All the worlds to lose yourself in, the amazing characters to meet and stories to delve into.
  16. I have moved more times than I feel like counting, but it’s around 30.  I occasionally wonder what it would have been like to stay in the same place but as I have gotten older, I have learned to be thankful for the life experience I have had due to these moves.  I have had to opportunity to meet some truly amazing people, to live in some great places, and learn things that I would not have without all these moves and the changes and challenges that came with them.
  17. I am thankful for all the amazing people that I have met, for the people I still know and am in touch with and the people I am not.  I am thankful for the friends of the past and the friends of today.  When I was little, I disliked the song “Make new friends” because I misunderstood the lyrics thinking that they put emphasis on one kind of friendship over the other, not understanding that all friendships are equally as precious regardless of how long they have lasted.
  18. I am thankful for all of the people I met during my time at Ballard High.  All of the experiences that this time in my life, these people, brought to my life have helped shape who I am and I am thankful for each and every one of these people
  19. In the moving I did in my life I stayed for the longest time in Murrieta California.  I am thankful on a daily basis for the people I met there.  For Jeff, Chris, Amanda, and so many others.  I have the faith that I have, both in myself and in my God, because of these people.
  20. I am thankful for the year and a half I spent in Covenant Players.  I learned so much about myself and my faith.  My thanks for this time in my life would not be complete without mentioning my thanks for my Unit Leaders Karlie, Elizabeth, Betty and Matt, as well as all the amazing people I met during this time.  This listing the things I am thankful for has made me realize how important the people who we meet are, how everyone who touches our lives shapes who we are.  Everyone I met during this short time in my life, from Unit Members, to hosts, to people I just got to know during training have helped shape the person I am today!
  21. Yesterday I posted that I was thankful for my time in CP, today’s thanks is linked to this. I am thankful for Kristi. T and I met in CP and we were joined at the hip. Even though we now go long periods without talking due to the craziness of life she’s still my best friend and I know that no matter how much time passes I can turn to her when I need. I also know that no matter how much time passes we always seem to pick up right where we left off. Love ya T.
  22. I am thankful for the nearly seven years I spent working at Bright Horizons, if my desire to finish my education among other things hadn’t surfaced I would still be happily working there.  I loved teaching all the little ones I did in that time.  I met some truly amazing kiddos, so super parents and got to learn from some excellent teachers.
  23. I am thankful for all the children in the world the ones I have had the honor and privilege of knowing as well as the ones I have not.  As the saying goes Children are our future.  The world would be a boring and less interesting place without children to make us laugh, smile, and learn new things on a daily basis.
  24. In this day and age where so many people are unemployed I am thankful that I am employed.  I am also thankful that no only am I employed I am doing something that I love, I generally look forward to going to work every day.  I am thankful for all the amazing learning moments I get to experience with both girls, sleepy cuddles, and little laughs.
  25. I am thankful for my girls, my dogs that is.  Ginger has been a part of our family for 12 years now and is 16 years old.  She’s our sweet, loving, blind, deaf, and slightly senile old girl and I wouldn’t trade her for a million other dogs.  She’s saved my father’s life on a couple of occasions and my sanity more times than I can count.  She was an amazing companion to my grandma Helen when my Grandpa was sick.  She’s an amazing dog who I will miss greatly when she is gone.   Sissy has also been in the family, starting with Jessi and co as a pup, for many years.  She recently joined my household and became my dog.  I love the way she lays her head on my lap when I get home from work.  The fact that anywhere between 7:30 and 8:00 she will decide it’s bed time and go curl up in the middle of my bed, looking at me with a look that says where are you going to sleep when I come into the room.  She is a comfort when I am sick and stole my heart the moment I met her and again when she became mine.  I did not claim her,  she claimed me, and then we claimed each other.
  26. I am thankful that I am allowed to believe what I want.  True there is some persecution in this country but nothing like some areas of the world.  I don’t go out in fear of being shot for carrying my bible or wearing my cross.  Some people may not agree with my beliefs, some people may be offended by them but I am still free to believe them.
  27. Fifteen years ago the church I was attending began using a great curriculum, I went to a training and quickly fell in love with the ideas behind the program.  A few months ago, after talking about the material for years with our then director of Christian ed., my church implemented Godly Play.  I am thankful that St. John’s is using this curriculum and I am thankful that I get to join in the fun.  I love being in the Godly Play room during the Sunday service and when I can for a preschool class.  I am thankful whenever I get to say that I am ‘Godly Playing’, it seems like such appropriate wording since it feels like Play not school.
  28. I am thankful l for my church home, St. John’s Episcopal Church.  I often find it odd that I spent years working just down the street but didn’t visit except for an occasional Ash Wednesday service.  I am thankful for the amazing people I have had the privilege of getting to know during the past five (?) years at St. John’s.  I am thankful for the Sunday school classes I have taught, my time working with the youth and so many other things.  St. John’s isn’t just a place I go to worship, it is home and a part of my family!
  29. I am thankful for the faith that I have.  I am thankful that I had a family that guided me when I was growing up toward my belief.  I am thankful that I was never told to believe something ‘just because’ it’s was right but was allowed to question, wonder and understand.  I know what I why I believe because of this.  I am willing and able to question by own as well as others beliefs because of this.  I am able to explain and defend my believe because I was encouraged to understand it.
  30. God, that there is a God, that I believe in him, that I know he loves me regardless of the stupid things I do.  So many things fall under this thanksgiving and I can’t seem to find the right words to express what I am thinking and feeling here.

In all the chaos and craziness of life it is imperative to remember all that we are thankful for!

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Over the past few months, I have been forced to take a hard look at myself.  Like anyone, I have some remarkable personal qualities and some downright terrible ones.  I have this wonderful ability to push people away by needing to do things myself, having that ‘If you want it done right you have to do it yourself’ mentality.  I have sadly hurt some truly amazing people, and missed some great opportunities because of this.  I think this ‘perfectionism’ and my ability to say things in the harshest possible ways are by two greatest flaws as a person.  I have been lucky that I have had remarkable people come across my path over the past seven and a half years who regardless of the issues saw the good and challenged me to better myself.  Unfortunately, as much as I was aware of these issues it took living in a very small place with two people whose opinions mean the most to me, and some remarks from a third, that made me realize as much as I have grown there is a long way to go.  If I am going to follow my heart and achieve my goals of guiding and helping the next generation in achieving greatness, I need to first figure out how to guide myself towards being the person I wish to be.

Once again the song ‘The Girl I Mean to Be’ from the Secret Garden comes to mind.  At one time in my life I was very much the image of Mary Lennox, quite contrary, and I have grown and changed in my life but there is still a long way to go before I can be like the happy and healthy girl, in my case woman, at the end of the story.

Part of becoming ‘The Girl I Mean to Be’ is becoming a healthier me.  I have struggled with my weight and body image all my life.  When I was young, I had some I looked up to tell me repeatedly I was fat and ugly and I believed it, and if I was already fat, and ugly, what did it matter.  It has taken me a long time to accept and love myself as I am, but as much as I do not look in the mirror and see the fat, ugly little girl I do see a young woman who need to take better care of herself.  I have attempted many a diet in my life without much effect and I think if part of it was that I kept it a secret, there was no one to hold me accountable.  So that’s what this is, my way of shouting it from the roof tops, I plan to be more active, to eat better and allow everyone and anyone who wishes to help me stay accountable to these goals.  I have a long road ahead of me, heck it is a mountain but I will make it to the top.

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