Guess who?

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

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

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

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

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

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

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

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

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

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

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

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

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

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