Monday, June 15, 2015

I LIVED







I was sitting in my room on top of my bed with my legs folded Indian style and my face weighing into the palms of my two hands. Tears were leaking through the cracks in between my fingers and dripping down into my lap.

It was one of those frustrated cries. One of those way too familiar cries. A cry that I had had over and over again over the past two years. It was a cry I didn't want to be having. In fact it was a cry I couldn't believe I was having. After all this time my cheeks should have been dry.

I had decided in May of 2014, after I had received my diagnosis for lyme disease, that I wanted to be cured in time for the standard dance audition season the following year. Up to that point illness had robbed me of two years of my dancing dreams, and although doctors were uncertain, I was itching to get back onto a stage again. Now that I knew what I was fighting, my sheer grit and stubborn personality was going to pull me out of this lyme debacle in no time. I was sure I was going to be the dancer who was cured from lyme disease.

Except here I was. Late February of 2015. Sitting in that defeated position on my bed with my head throbbing in my ears. Exhaustion weighed down on my skull, my eyelids, my shoulders, my chest, my knees, my feet, my bones. I was still very sick. I had decided in May that my first audition back would be for Season 12 of So You Think You Can Dance. Unfortunately the tour dates were getting closer and closer and I just wasn't any better. Not only did I lack energy and strength to dance, but lyme hindered my brain's ability to pick up and retain choreography, I hadn't been training consistently in over two years, AND I didn't have a solo prepared. There was no way I was going to be able to follow through with my plans anymore.

I was offended really.

I tend to think I am an excellent planner with brilliant ideas. A healthy Haley seemed reasonable to me, but for some reason the determination that had pulled me through so many other tight squeezes was just not getting the job done anymore.

I told my roommates the news and expressed my frustration to them as I often do. After listening to me for a bit my roommate Lucy turned to me and said, "Haley, you keep trying to be the girl who was cured from lyme disease, and then got to live her dreams. Instead you should try to be the girl who LIVED with lyme disease."

I couldn't believe it! She was challenging me to audition for the show as sick as I was! She told me to stop waiting for my cure, and to start living as best I could now. Of course I wasn't going to be my optimal self, but I was going to be doing something and there was power in that.

So I accepted her challenge.

It took courage. 

For all of the reasons I mentioned above, and then some!

Each morning when I wake up, my body groans and begs me to stay cemented to my warm bed. I always win a small victory by rolling over onto my knees and saying a prayer to my Father in Heaven that he will give me the strength to do whatever it is that he needs me to do that day. Each day, this is where I first decide to live. Whatever I might attempt, as small or as big as it may be, that prayer follows me all of the way along. Some days it is all I can do to lie there and sleep all day. Other days I am able to walk up to campus and sit through a little bit of lectures. On days that I really feel like fighting hard, I get myself to battle exhaustion, and to teach dance. While everything I do seems to be difficult right now, He gives me the strength to make it back to my bed on my knees with gratitude by the end of the day.

The morning I auditioned for the show was no different than any other sick day for me. Except instead of praying for strength to endure shots in my spine and IV antibiotics that made my head throb, I was praying to do something that seemed impossible for me.

Anyone who has been through the So You Think You Can Dance audition process knows that those days are LONG. You wait and wait and wait! Every normally functioning dancer is exhausted by the end of the night. Now imagine them doing all of that after running a marathon and you might understand what it was like for me.

Miraculously though I was sustained.

I prayed each time I danced, that if for some reason it was the Lord's will for me to make it past that round, He would improve my skills and give me the strength to perform. I asked Him to help me enjoy it, because it had been so long since I had gotten to dance for an audience.

Let me tell you. Performing on that stage for the audience and judges was an unbelievable gift. I cannot adequately express to you what it felt like to tell my story in such a personal way to me. I had spent so much time off of the stage, it was brilliant to finally get in front of the lights and feel the joy only performing can bring me.

That day I had a giant victory over lyme disease. Over chronic illness. Over what I can and cannot do. I got to make it to Vegas!!!! That was a beautiful tender mercy for me. Despite pain and frustration and fear, I got to LIVE that day, in a big way.

I don't know why I couldn't be cured in time for my audition that day. I don't know why it is that I am still the girl who lives with lyme.

I don't know why some of us will continue carrying our burdens for a long time, or why some of us will have freedom from our challenges very soon. I don't know which of you will have lives that will fall in line with your dreams, or which of you will have to accept that things will not always be as you had hoped. But I do know that we are all learning lessons that will develop us into who we need to be. I know that we are each strong, powerful and capable. I have faith that life will be what we need, no matter how hard or how wonderful our days may seem. I know that in the middle of where you are; be it before, during, or after hard trials... we can live. Everything we can do to help and to serve.... means that we are living.

I know many of you out there are dealing with various debilitating life experiences as well. I am so inspired by how brave so many of you are. It takes courage to wage battles in the body, in the mind, and in the world.

Whatever it is that gives you strength in times of trial, cling to it. For me personally, I have come to learn that I am not capable of living on my own. I have found that my own merits will bring me up short of finding happiness during struggles every time. Because my Savior walked a lonely path and atoned for my sins, I can pray for strength to overcome every obstacle in this world. Through my Saviors love I will be whole again one day. And through my Saviors love, I can find a way to live in the mean time.

To be honest, mostly I just feel small. But today instead of giving into that...I will live. 

Here is a rehearsal of the piece I auditioned with for the show about living with lyme:


"Therefore, dearly beloved brethren [and sisters, when we are in even the most troubling of times], let us cheerfully do all things that lie in our power; and then may we stand still, with the utmost assurance, to see the salvation of God, and for his arm to be revealed." [D&C 123:17; emphasis added]

As Stephanie Nielson once said, "Humans are strong, but mostly God is good."

I love you, and I know God loves you,

xoxo
Hay




#howtheylive Campaign:


Please post a picture on Facebook or Instagram of you living in spite of the challenges you are experiencing. Hashtag it, #howtheylive and share a bit of inspiration with the world! Lets get this ball rolling with goodness! Each week I will be highlighting people who live their life in beautiful ways beyond their struggles. If you or anyone you know exemplifies this, please email me at howtheyliveinquiries@gmail.com so I can highlight them here on the blog!

Look at my How They Live page up top for more info!

Thank you to Kati and Ian Elis for all of their help with getting my blog whipped into shape and for being incredible supports to me throughout this challenge. A thank you to all of my friends and family for all that they do for me and the strength they give me daily! And of course a giant thank you to my angel mother for never giving up on getting me healthy. You are the biggest blessing in my life and I don't think there is ever a way that I could repay you for all of the love and hope you have given me. You are everything I hope to be.

Links to follow:
lds.org
ilads.org
tiredoflyme.com

Lyme Life as seen through my iPhone:


                                      





(SHOTS!)



(getting my pic in at the hospital)













(Each time I have treatment I get shots in my head and down my back... oh and one in the bum)




It will be ok.... It will be alright. 

6 comments:

  1. Amazing post, amazing dance, amazing hair, amazing influence, amazing story, amazing human.

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  2. Im in awe. You're incredible, Haley! Thank you so much for sharing.

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  3. Oh sweet sweet neice Haley. This is beautiful. I am so proud of you. I love you and pray for you everyday of your life. You know I am always here for you. God is good and knows our pain and sorrows. Muah.

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  4. I too believe that " it will be ok...and you will be alright" .. You have God and you have your Mom... they are both fighting for you.. but most of all you have an amazing spirit that will turn this nightmare into a blessing in someones life some how... I am so proud of my little name sake.... Hey....Lee...Ann.... you have my love my admiration and my prayers

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  5. You are really an inspiration. A lot of people have problems they need to work through and looking at them would think "oh if I could just get through this I could follow my dreams, or I could do this" but I've never thought of following your dreams regardless of your problems, fighting through them and pushing yourself to the limits. You are honestly amazing, and I hope you go very far.

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  6. You work girl. Sending love and support your way ❤️

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