I should be dead. I SHOULD BE DEAD! But I’m still hear and still kicking and screaming and fighting with every single thing I have!
I know in previous blogs I’ve expressed my affinity for the band Halestorm and I’ve quoted Lzzy Hale on more than a few occasions. I’ve failed to go into the importance of their music and music, in general. Without both, I know for certain, I would have given up my fight a long time ago.
It was April 3rd, 2014…The day I got my diagnosis that took me well over a decade to get. Lyme Borreliosis Complex and Bartonella (with suspected Babesia – later confirmed with the addition of extremely high Mycoplasma levels.) I was told that without medical intervention that I would be DEAD in a 10-12 month time period.
The worst part is that I was so thrilled to know what was finally wrong with me that I didn’t even acknowledge the fact that I was that sick and that close to dying! It was my doctor and my mom who seemed more concerned with that. But it set in later. And its been on my mind a lot lately. I feel like I’m living past my expiration date and it feels fucking fantastic!
I have been to Hell and back so many times, I think I’ve earned dual residency there. Its been an insane roller coaster in every way. I’ve been tested and pushed beyond my limits. I’ve been suicidal. I’ve been near death. I’ve gained my faith in God and found my spirituality. I’ve gained the ability to love and to be loved. I’ve lost most of the bitterness and coldness.
Without my mom, I could have never done this! She took care of me and shouldered most of the financial burden. She was every thing that I could ask for and then some. She earned her wings – some of what I put her through mentally I wouldn’t wish on my worst enemy! Thank you to all those who donated any money or time or well wishes. It all helped!!
But there’s been a secret to my recovery that I haven’t talked about much – its the music!
Everyone needs something to get them through treatment. You HAVE to want to live and you HAVE to have something to live for! We all need hope and what gives that to us will come in all shapes and forms. I had my mom and my family and friends and the hopes of marriage and babies and love! But when you’re down there in the trenches and you have that moment of “aloneness”, you NEED something. Compare it to the men and woman in the armed forces being in combat – they might carry a picture of a loved one, or a scripture, or a lucky item-anything! Fighting for your heath is similiar, in that “moment” we need the same thing. For me, it was and still remains, MUSIC.
Over the last several months (well really since my mom went back to work in September) I’ve had so much alone time. Everyone thinks “wow that would be so great!” Well its not. Its not great to STILL be fighting for your retirement. Its not great to be sick. Its not great when you can’t drive, when you can’t walk up/down a flight of stairs, when you can’t even get out of bed. NONE of it is great except for the fact that I don’t have to work through treatment, that’s something I can’t even begin to imagine!
With all the “aloneness” that I have, MUSIC has been my saving grace! When I sat with a loaded gun in my hand and came up with ways to kill myself (after I gave my gun to a friend to hold onto for safe keeping), when I was right on the edge of breaking and no one was around, I could hear lyrics. I think my guardian angel knew how to reach me.
I can remember one day when I was breaking and I called my mom. She couldn’t be here at the very moment I needed her. She told me to pray The Rosary. I did because I promised her I would. I could feel it start to calm me as I prayed. About 1/2 the way through The Rosary, I wanted my music. Being the Virgo that I am, I couldn’t NOT finish what I had started. I don’t think I have ever prayed that hard and fast in my life. As soon as I was done, on went the music and I came back to planet Earth and back to the fight I charged.
There were days where I would just put my ear buds in turn up as loud as it would go. “She turns up the music to drown out here life.” I have a very eclectic taste in music. I would go from Halestorm to Bach to Tool to Nelly to Tim McGraw (ok, you get the point.) But mostly over the course of the last year, its been Halestorm (and anything with Lzzy Hale) with a little Ed Sheeran and a lot of Five Finger Death Punch. There were days that all I did was listen to music (those are the days that went by the fastest for me.)
I used to be musically inclined but my fear of failing at if forced me to quit before I ever really got off the ground with it. I sing ALL…THE…TIME! I think that’s some cruel joke, because even though I know I can’t sing, everyone around mes get the joy of hearing me. If I can’t find the words (especially with all my brain damage and healing) bet your ass I will find a song! I gave everyone in my family songs for Christmas. Some had songs that I knew they’d enjoy, but most had songs that I thought they’d enjoy AND they had some kind of meaning to me. If I listen to them, I can say “well this is how I secretly feel but couldn’t say” or I could tell you the story about why that song means something to me or “every time I hear this song it makes me think of you” etc. I saved copies on my playlists. Since then I’ll play them and think to myself “I wonder if “we’re” listening to this at the same time” or “I wonder if they like it” or “I wonder how it makes them feel.”
I’ve talked about my darker moments. How when no one or nothing else could reach me, music did. It was like a golden hand, illuminating the darkness. I think the right song can do wonders for your soul. It can change your mood. It can be an expression of yourself. I have music for every new emotion I’m learning and experiencing. Music is my tool in learning my emotions and how to handle them.
THIS IS A TRUE STORY! A couple weeks ago, I was going through a very rough period mentally and emotionally. I was very down and despondent. It was not a good time for me at all. I woke up one morning and I had this song stuck in my head that I didn’t know. I remembered hearing it my dream. I rolled over to look at the clock (my phone) and saw that Halestorm had released a new song off their album that I pre-ordered and that it had been downloaded. I immediately went in and listened to the song and sang along with it-first time hearing it. It was the song from my dream! No kidding! I called my mom because I was so freaking amazed. The song is called “I am the fire” and its become my personal anthem. Divine intervention!
Halestorm’s new album – A-MAZ-ING! Sometime I swear Lzzy Hale is inside my head. Halestorm had been releasing new songs on iTunes (pre-orders) and each song was just what I needed at the moment. I highly recommend this album – especially to my fellow Lymies (must check out “Sick Individual” / “I Am the Fire” / “The Reckoning” / “Unapologetic”/ “Amen”)
The following is from “Sick Individual”:
“Well you think that you know what I am, but you don’t / Cuz I say what you can’t and I do what you won’t/ I like I loud, wear it proud, like a crown upon my head / I’ll always be this way till the day that I’m dead…Cuz I’m a sick individual and I’m doing this thing called whatever the fuck I wa wa want / I’m unusual, ain’t taking no shit!/ Gonna drink this sip sip till its gone gone gone / I’m living it up NOT giving a what / I’m living it up not giving a what / Sick individual and I’m doing this thing called whatever the fuck I want!”
Living again. Getting your second shot at life. Living past your expiration date. Going through treatment. These things readjust your perspectives. They make you better. They make you a better person. You’ve learned how to fight and survive and face your fears and so you get to live life in a way that few can. You’ll still hear “well you didn’t have it that bad, especially compared to “such and such” disease.” Truth is unless you’ve been through both you’ll never know. Just like no one will ever know your full story. I speak for what I’ve been through. I know what its like to feel like you’re dying, to want to die; to be sick for years on end and suffer misdiagnosis after misdiagnosis; to be judge without mercy; to have had so many complications…I speak about my own journey. Unfortunately, because tick borne diseases are not talked about and so often misdiagnosed and is the “HIV/AIDS” of today, most people are not going to understand.
This is why we fight! For education! For health insurance to cover to cover our treatment! TO SAVE OTHERS!
So find whatever it is you NEED to survive! For me its the music! For you…the possibilities are endless…
One of my biggest dreams (after the above mentioned, being a wife and mother) is to meet the band Halestorm and personally thank them for all that they don’t know they’ve done for me. The music saved me! I have a quote from Lzzy Hale on my bedroom door that I read every single day! I’m doing everything I know how to do to make this dream a reality (within my financial means.) I am asking a favor…if anyone has any suggestions or can help me with this dream, I would be eternally grateful! Lzzy, Arejay, Josh, Joe – keep rockin out and keep putting out music!