Wednesday, September 18, 2013

If My Heart Was A House, You'd Be Home

 Well. I just have to blog about the best man, best time, best love, best experience, best memories, best everything, best day ever. I just have to. Because it's just the best ever.

Throughout the years, I know that my illness has played a profound role in how others see me. Sometimes, in a not so good way. That can be hard and painful. If you have ever felt that, please know that you are not alone. Growing up, I worried so much that I would not ever be able to find someone that could accept that part of me. My illness is a part of me that is often times still hard for me to swallow, let alone another person. I always worried that I would never find someone who would love that part of me. There have been points of my illness where I have felt real loneliness, a real loneliness in my physical pain and struggle. I have had real experiences in the past where as soon as a boy found out about my illness, I never hear from him again. That created a lot of heartache, and I put up lots of walls. Then one day, someone walked into my life that could help me take those walls down, and heal that heartache and loneliness. And it was in a way that I never even dreamed or ever expected.

Once upon a time, I wanted with all my heart to serve a mission. I am a member of the Church of Jesus Christ of Latter Day Saints, and ever since I was a little girl, I dreamed of serving as a missionary. I grew up watching missionaries teach people in my family's home about Jesus Christ and His Gospel. I saw the way that it brought light, hope and healing into their lives and I wanted to share that same light, hope and healing that had entered my own life because of the Gospel of Jesus Christ. When I turned old enough to begin the application process, I had just come out of a very difficult year and a half of my illness. The chronic pain and other issues were still an everyday concern, but I was so determined to go and serve. I wanted it more than any other goal or dream at that time. When I applied at first, the Church asked me to do a three month trial mission before the officially sent me out. They wanted to make sure I could physically handle the schedule and rigors of missionary work, because it is real work. My illness was a concern, but I was more concerned about accomplishing my dream and serving the Lord.

I met Adam my first day as a missionary. He was serving as a missionary in the Missouri Independence mission. Time went on, and eventually he found out about my illness. When he found out about it, he came up to me at a meeting one day and said, "Sister Graves, I know that it is possible for you to serve a mission despite your illness, because I have a chronic illness too and the Lord helps me do it everyday." Needless to say, his example inspired me. For the first time in my life I didn't feel so alone. There was someone who could really understand what it is like being sick everyday. I mean, truly, completely understand. He gave me a lot of strength during that time, and helped me understand that with God, all things are possible. I was able to receive an official mission call to the Washington Seattle Mission, and treasured every moment I had live my dream and serve a mission. It was the hardest, most soul stretching experience, yet it is a sacred treasure in my heart because the growth I felt spiritually, the miracles I saw everyday, the people I met that were able to draw closer to Jesus Christ. I will always treasure the helping hands from heaven that I felt each day that carried me, guided me, and pushed me along when I lacked the physical strength. Some of the greatest blessings of my life are a direct result from my mission, and Adam is one of them. 

Adam's illness began when he was a young teenager, like me. He has battled his illness so bravely for a little over ten years. I stand amazed everyday at his strength, his determination and his courage. Never once have I heard him complain about his illness. He has an illness called eosinophilic esophagitis. It is an inflammatory disease of the esophagus, and causes severe nausea, vomiting, stomach spasms, and dysphagia (swallowing problems). He is my hero in every way. You would never know the battle that he fights everyday just by looking at him, because he is so full of light, strength, consideration for others and pure kindness. Despite his illness, he is constantly looking out for others and serving them. He has a special kindness and pure spiritual and mental strength that permeate his every action. He is steady and true, and he has captured my heart. He picked it up off the ground and has mended the cracks I thought could never be healed. It's as if he knows what my heart sounds like from the inside. He fills my soul to bursting with joy and hope.
 We quickly became best of friends after our missions.

When we first started dating, I was very ill. My pain was high everyday. My back, arms, legs and neck ached constantly and my stomach was in severe pain as well. I had just moved back to Utah after living in Missouri with my family for a time, recovering from my mission. I was still in a hard place physically. These were the first moments we were spending together, and they were spent with him coming to sit with me day after day to take care of me. He would bring me food, watch Disney movies with me, listen to music with me, talk with me, make me laugh, and he would just sit there and hold me if I needed to just cry and breathe through the pain. He would wipe away my tears and just love me the way I was. He would and still is helping me love myself just the way I am. Chronic pain and all.

Falling in love and having the blessing to marry this choice man has been the most beautiful spiritual and physical experience of my life. He brings me closer to heaven. We have had our ups and downs with Adam's health as well. There are some days where all I can do is hold him and pray that he can feel better soon. It is a continual learning process to be able to cope with his illness, and my own. Adam is learning the same thing. It is beautiful strengthening process. We need to rely on each other each day, and through the hard nights. Adam is always there for me. Even when he is sicker, and I'm the one struggling, he reaches out to me and is my safe haven. I have seen God's hand in our relationship from the beginning, and I know that His hand will always be in it.

If you have a loved one who has a chronic illness, I know it is so hard to watch them suffer. You are not alone. It is heart wrenching at times. Also know that your love and care means more to them than words can express. Please, be patient with them, for they are fighting a hard battle. Also, know that your love can be enough.

If you are battling a chronic illness, be patient with your loved ones, for they are fighting a hard battle having to see you suffer. They feel it deeply, and no matter how alone you feel, you are loved. Please remember that. You don't have to battle your illness alone. You are still good, beautiful, strong and amazing even with your illness. You are loved more than you know.

I feel so blessed to have Adam. One who truly understands what my illness and pain can do. I'm not fighting my illness alone, and never will have to fight it alone. Not only does he come to my rescue, but we can fight the battles together. Even among these challenging times of dealing with our individual illnesses, we can have pure joy, happiness, laughter and hope! He will never be fighting alone either, because guaranteed I will be there at his side.To quote one of my favorite bands Mae, "All that I've wanted is standing in front of me, all that I need that's for sure. You came to my room when I was sick and you made me yours. All you could need or expect it will come from me, no one will ever love you more. You're in my world for good and our love will always be the cure."

 Photography by: The amazing Amanda Castleberry!

Friday, May 24, 2013

Lights and Angels Will Guide You Home

This is a very special post. There is so much in my heart, and so much I feel so deeply and so much I want to share! First, I must begin with a miracle that happened just last night. This miracle needs to be shared.

First, I know that there are angels hiding in the motions, actions, thoughts, and love of humans. Especially the humans that love us the most. To quote one of my favorite songs, "There are angels hiding in the bones of humans...helping all these miracles along."

I received one most beautiful and touching gifts ever given yesterday by my dear angel friend and sister, Emily Dance Fish. She choreographed a dance that tells the story of my illness and pain. She and her amazing angel dancers kept it a secret from me until the performance last night! When I found out I began to cry. My heart was bursting. When the dance started, it was like I had entered a dream. It was so surreal and beautiful. I wept tears of healing and hope. Dance is a very special part of my heart and who I am. It has been a grieving process for me as I have felt my body weaken and to feel pain when I am moving and dancing, doing something that I love most in this world. When I watched that dance it was as if my spirit was dancing with them. It didn't matter that I was in pain, because I felt free. There are moments and movements in this dance that tap into my spirit and heart so deeply that it takes my breath away. This dance is one of the most beautiful things I have ever seen. I feel like that if someone hooked up a projector to my heart, the movement from this dance is what I would see. It also is to a song that is so special to me, I have no words to describe the inspiration it gives. The song is "Fix You" by Coldplay.

Sometimes I feel like there are certain songs or lyrics that have been pulled straight out of my heart and played from it's strings. This song is one of those songs. These lyrics are perfect for all who struggle with chronic illness. They are perfect for anyone who has struggle. That's all of us.

There are two versions, one from another competition they performed it at and the performance last night. I wanted to show both, because one shows off the choreography better and one shows the lighting better.  Click here for one that shows a better quality of the choreography. :)

Emily later explained to me that the two dancers in red represent the illness. They are not portrayed as evil or bad. Rather an aching, but necessary part of my journey and who I am. My illness causes pain, not only in my hands, legs, back, stomach and arms, but also in my heart. They dance and move with me, but they are not who I really am. That is true for all of us. I want to make that clear. Our trials and pain, whatever forms or shapes or hardness they come in do not have to be evil, nor do they have to overwhelm our entire life. They can be tools for us to grow. As much grief as my illness has caused me, it also has been one of the greatest means for me to see the true beauties in life, and see what is truly important. In that sense, I am grateful for my illness. That can be true for all of us. There can be a balance of working through the challenge, yet still being truly happy, laughing and loving and experiencing true joy and peace. Yes, there are days when the burdens can be so heavy that they drag and push us down, but we have the strength within us to stand up again. They can reach us to our deepest parts and shake us to our very core, but we have angels and help to protect us and guide us through. We have angels around us to help heal us and stand up again. We have angels to help us when we are weak and feel we can't take one more step. They can lift us up and help us focus our gaze towards hope, light and heaven.

We may be marked in some way by the challenges we deal with. The red sash in the dance represents that. But, in the end, we can carry on while carrying the very things that hurt us. Our challenges can be the very thing that make us the best we can be. I believe and know that the hurt and problems we deal with will not last forever because of the reality and hope of Jesus Christ and because no matter what challenges we face, we can be happy and dance after our dreams. I must remember that.

Sometimes it may feel like we are constantly being pushed and pulled, tossed, turned and too bruised and broken to be fixed anymore. I know that we are made out of much deeper stuff than illness, and the struggles that come our way. Yet, it is our struggles that pull that deep stuff out of us for us to see and learn and grow from. It is an amazing process. I have so much to learn, and I am so grateful for the little and big experiences that give me some healing and help me try again tomorrow.

Awhile ago someone asked me what it was like to have to give up on my dreams of dancing and singing because of my illness. I told her that I had not given them up and that there was no way I was ever going to give up on those dreams. I feel so weak and worthless sometimes, and this dance has renewed my hope and fight to keep chasing after my dreams, goals and the quality of life that I want to live. I hope that it does the same for you.

There are lights to guide us home. There are those around us who yearn to fix us, and we yearn to fix them. I think that is one of the main reasons for challenges in our lives, so that we can learn how to help fix one another and be lights to each other. As the song sings, "Tears stream, down your face, when you lose something you cannot replace. Tears stream, down your face, and I will try to fix you."

I hope that we all can take the time to thank the "angels" in our lives that help us and lift us up beyond our struggles.

Thank you to these dancing angels. Emily, Shaunie, Brighton, Aisha, Aimee, Janessa, Magaly and Dulcee, you have given me a priceless gift. I want you to know that I will always, always treasure you and this dance. When I am hurting, I will remember this, and it will help me keep going. I hope that it does the same for you. What a bright and beautiful light you have brought into my life. There are no words to express. Keep dancing and inspiring. Each of you are amazing, graceful, and beyond sweet. You are all exquisite. Thank you for touching my heart. Know that I am thanking God for you in my prayers I know that He will bless you. I love you all with all my heart!

Ems, you have given me a most precious and beautiful gift. Your work and heart are amazing. You are my angel. From the beginning, you have brought joy, love, hope and peace into my life. Thank you for carrying me, and for always helping me see myself past my illness. I just don't have the words to express just how much this means to me. I love you forever.

Thank you to all my family, friends and angels who continuously love and carry me. I weep tears of gratitude as I write this for you. Thank you for being my lights and for helping me experience true joy and love on our journeys together. You all continue to amaze and inspire me.

I am filled to the brim and overflowing still. Sending you all my love.

Tuesday, February 19, 2013

Confessions Of A Chronic Pain Sufferer

1. My Savior, Jesus Christ is literally who carries me through each day. Not only carries me, but gives me such merciful amounts peace, healing and mercy. I must confess just how difficult it is to share these experiences and feelings. My illness and pain have always been something I have kept locked up inside of me, not wanting anyone to know. But, this is my small, little girl attempt to make a difference in the lives of others who have chronic illnesses, health problems, or physical disabilities.  I am determined to share my knowledge that you can have joy, peace and happiness even amongst the deepest pain. 

2. The pain that I have is in my muscles and joints, therefore any sort of activity or movement hurts. The greatest pain centers for me are my neck, shoulders, back, hands and legs. It is no secret that have a great love for life though and all of the joys it brings! Life is amazing, and it full of so many more beautiful and significant things besides the pain.

3. Sometimes my stomach feels so sick that I want to cry. So, sometimes I find something to make me laugh. Sometimes the pain feels like knives in my muscles, or someone is twisting them into a knot. I just try to take some deep breathes and focus on what I can do that day. One day at a time.

4. Music is my life force and my escape. It is how I cope. It is the place I go to find relief. Sometimes, all I need is to put on my headphones, turn on a little Owl City, Ingrid Michaelson, Mindy Gledhill, Relient K, Mae, Joshua Radin, Yellowcard, Jillian Edwards, Aaron Espe, Coldplay, Nickel Creek, Sarah McLachlan or Sky Sailing and fly away! I close my eyes, take a deep breath and let the music and lyrics heal my mind and spirit. It is in music where all of the deepest feelings in my heart are put into song. It will play on my heart strings, and give me some hope to keep moving forward. Speaking of lyrics that melt away the hurt, this one is from Relient K.

5. I will never forget this one day. When I first started getting sick, and my body was increasingly in pain and I was only 15. After a time being sick at home I returned to school. I had to walk up some stairs to get to a class. I couldn't do it. After five steps, I had to sit down and rest. It took me 10 minutes to get up those stairs. I was late for class. I realized as I sat there, that my life would never be the same again. I felt a weight come on my shoulders that day, and even though that weight is still there, and often feels heavier than ever, it will never have the power to knock me down. 

6. Disney makes everything better. Dreams really do come true, and happily ever afters are completely realistic. I believe that will all my heart.

7. My family and friends have pulled me through. It has been their love that tells me I can keep going. I can face the next day. It is their love that reminds me that I still have worth, importance and value. They teach me that I am more than my pain, and that I will be loved no matter what. I want all who suffer to know that. You have so much worth. There is so much greatness and awesomeness inside of you! Don't let your illness bury that. Rise above it. 

8. Sometimes, my pain and illness really scare me. I have been in a place where I can't even mentally or emotionally function because of how sick I am. Sometimes my pain is so high I go into a state of shock and my body starts rejecting everything. I can't move, and just my clothes on my skin are painful. Being in that place really scares me, so when I feel myself getting sicker I fight really hard to keep fear away. If you are ever in that place with your illness, find what takes your fear away. For me, it is knowing that God will take care of me, that He is with me, watching over me, and will never abandon me. Find what keeps you from being scared or afraid and hold onto it everyday. Let it be your light when it seems like all is dark. 

9. I made a promise to myself and to God that I would never give up. I promised that I would hold on and move forward no matter what. Because of that I hold myself accountable to see the light, and the beautiful things in my life, and what I am grateful for, no matter how sick I am, how hard things are, or how far away my dreams seem. I can spend a good time crying and hurting, but I always need to chose to move pass that and see the light behind the clouds and the light that is able to enter my heart because of the cracks in it.

10. My name is Caitie Graves, and I am not my body.

Thursday, January 17, 2013

New Start, Fresh Start, Running Start, Heart Start, Love Start, Hard Start, Brave Start

Sometimes, all you need to do is take your deepest breath and walk down the steps. Sometimes, walls come up, and you need to knock them down by just pushing forward. It's when the impossible clouds everything up, and it is so hard to see your way forward, but you take that step ahead anyway. I think it's called having a brave start.

That is what I am striving to do right now. I am striving to surrender my fear and to be brave with my life.

It has been eight years since my chronic pain and illness began. When it began, it was so confusing, and there were no answers or relief to be found. Eight years later, sometimes it feels the exact same way. Every morning when I wake up, my heart gets broken all over again because of the pain. Whenever I walk or take a step, there are shooting pains that run up my legs and back. My muscles constantly ache, and in turn my spirit aches because of the things I yearn to do, and the dreams I yearn to chase. It is difficult to feel strong, important and worth something when you are in bed everyday. It is hard to feel strong when something as simple as writing, walking, getting ready for the day and picking something up become intimidating tasks. But, that is what I am striving to fight right now. I am fighting back at the destructive thought that I cannot control my health, my life or my dreams. I want everyone who deals with chronic illness to know that is simply not true. Your illness and trials may be a part of you, but they do not define you. The choices you make everyday define who you are, and what you do. The last year I have spent the majority of it in bed, and so sick, sometimes it truly scares me more than I can express. But, I have made the choice to move forward with my life. To push and knock down those walls that come with years of being sick. I have such a long way to go. I have so much to learn. But, all I know right now is that I need to try. I need to try and fight to get my life back. Right now, I am doing just a little bit at a time. Taking a class, living on my own, continuing my physical and water therapy (more on that in future posts), continuing to search for healing, physically and emotionally. It has been a huge step for me. It is a huge jump, but I sure am willing to leap, and hope that I can fly. I would much rather leap and take a chance then continue to be barred up and confined by the walls of pain.

I can say that I know that I am not alone. First, I know that God is with me, and He carries me everyday. Second, I know that there are so many others who deal with these "silent" chronic illnesses. I want them to know that they are not alone either, and there is always hope. I don't care how dark your world may seem, or what you deal with. There is always hope. Period. Choose to see it, choose to fight for it, choose to have a brave, new start. I know that it will all be worth it. We must begin, leap and take flight. 

Don't be afraid of your walls, just take a deep breath and walk forward. Take a leap. Sometimes we may be missing a wing, but that doesn't mean we can't leap and learn how to fly. We just have to adjust the wings we have been given.