I see all of these articles about how being chronically Ill is life altering, continuously frustrating, and a full time job that you can’t quit. And all of these articles are true. I also think that even though they convey the brutal truth about our lives, they don’t always show how chronic illness can change some one into a beautiful person. Most of the best people I know have chronic illnesses. I’ll tell you why. When you are laying in bed and every joint hurts, every time you sit up you can’t see straight, and your legs are too weak to move, all you want to do are the simple things. The things that able bodied people take advantage of, like take a long hot shower, styling your hair, or even eat at the table with your family. Slowly you start to enjoy the moments that you are allowed to have. You also appreciate the people that haven’t left your life. Trust me, if someone is constantly being cancelled on or having to accommodate someone who can’t do this or that, they get frustrated. So to the people who put in the effort and stick around, you are truly appreciated. And because we can’t go skydiving or spend hours walking around the mall, we really really like talking to people. Well at least I do. I can talk your ears off and I really hope you will do the same. Deep conversations are longed for. We want to be able to open up and not just say “I’m fine! How are you?” And because we know true pain a lot of us will never try to hurt you. For me I start panicking when I think I’ve hurt someone I truly care about. It’s nice to have a community that will love you even if it’s the 3rd time canceling. It’s not ideal but it definitely happens to the best of us. Remember we are in a constant battle with ourselves. We don’t ever get a day of no symptoms. It’s frustrating when doctors won’t help because they think we are addicts, people try to give us miracle cures, family and friends are frustrated with us, insurance companies won’t cover needed doctors or procedures, and medication gives its own swing of side effects. But We try to see the world differently. We see that people have more going on then what they let the world see. Instead of their actions, We see people trying to survive. We love stronger and judge less. We see pain and don’t want to cause more of it. But this is often one sided. So most chronically ill people find others on the internet or through hospital stays. Even then we find people that wallow in their illness/es. But we understand and love them and try to show them a better more beautiful side to our predicament. I know many amazing people with chronic illness or pain that prove all this to be true. One person who showed and continues to show an amazing example of beauty despite pain is the one and only Claire Strawman. I had the amazing privilege to get to know her and her parents at Mayo Clinic in 2015. We were learning different skills so that we could be sick and also have a good life. She had her bad days but she never failed to bring her sass and smiles. As the time went on she started looking better and talking more. I remember one day we put on music and we all started to dance. Claire was in a wheelchair and was too weak to dance at the time but she didn’t let that stop her. She stood up and put her hands into fists. She put them at her stomach and started twisting her shoulders and hips in opposite directions to the beat. We laughed and followed her lead. I remember that moment because she made me forget that we were all there because we were sick. I also remember when we all went to mall of America. Both of us loved this guy from the show pretty little liars. His name was Keegan Allen. He happened to be there signing autographs for his new book. We get there and the line is so long that we don’t even know where it begins. Since she was in a wheelchair at the time and I could barely walk around for 30 seconds, standing in that line was a no go. But we did get some shopping done and I let Keegan know that he lost the best opportunity to meet her that day by posting a picture of Claire on instagram and tagging him multiple times. As I ended my time there I saw her get much stronger then the first day I met her. And I was blessed to have met such a beautiful girl. Sadly she passed away this year on March 11th. December 2 was her 16 birthday. She showed me that even though we are sick, we are special because of it. Even though we are sick, it isn’t who we are. We are made different because of it and it’s our choice to look at the pain and suffering or the beauty and love that it can bring us.
I also met Michaela Ours. Trust me, the love emanating off of this beautiful young lady can make you melt. Her pain has only made her smile grow even bigger. I remember her laugh and her cozy socks. Only because she always had her feet on the table. She reminds me of hope. That you should always have hope. When she would show love to you she would also show you that there was always something to look forward to. I am so thankful and so blessed to have met her.
Now my first impression of Sydney Hensley was that this girl was super cool. And I was terrified of her. But as time passed it grew into respect. She is the picture of bravery. She faced her fears and pain with continuous perseverance. And I hope to be half the woman she is. Fierce, brave, and independent.
Audrey freaking Watson. The gorgeous woman I was graced with by her mere presence is a truth telling wizard. She knows the meaning of life. I live for each facebook post. Her smiling face can change a whole rooms mood. God created her for a reason and I am so happy that he did.
DJ Alex McCraw is on SoundCloud.(look him up) He is also the king of memes. At Mayo Clinic, his first day was one full of girls bombarding him trying to get him to sit next to them. He knew he was a stud. But deep down he’s really full of love. He shows love through his creativity. His music is a door straight to his heart. He’s not one for vulnerability. But he has the most creative and colorful mind of anyone I know. He also helped me conquer my fear of heights. Meeting him has inspired me to follow my passions and I hope he knows how unbelievably special he is.
Beloved Bre Alsobrook. The young lady that is unimaginably smart. I met her and I thought wow she’s shy, she’s just like me. And I was right, she is just like me because we can talk about anything and everything. Except she is actually educated on everything she talks about. Not only is she smart, she is also gorgeous. On the inside and outside. She reminds me that sickness is not excuse for not following your dreams. I was so happy to be able to talk with her and get to know her.
Connor Nelson is never afraid to be himself. As the oldest of us all he was also the wisest. He taught me how to ballroom dance. He also taught me not to be afraid of my pain. He and I learned that perfection isn’t always attainable. I’m blessed with knowing him and the fact that he showed us all how to be our goofy selves despite our illnesses or our surroundings. I hope he never changes because he has helped me in so many ways.
The Emma Dimeo, the girl who conquered. She rolled in on a wheelchair and walked out in vans. She showed me willpower. Even though she got frustrated, she made it. She showed me that sometimes we need encouragement. That it’s okay to stop and rest as long as you get back up and try again. I really hope she is tearing up the treads on those shoes. She has a beautiful heart and she is so lovely. I can’t wait to see where life is going to take her.
Lily Hedtke is a hard working woman. She was very tired but she knew how to make a joke. And her love for fidgets is the real deal. Speaking of the real deal, she is now engaged to be married and I am so excited for her! She just keeps reminding me that we deserve love and a happy life. And I wish both of those thing for her and her husband to be!
Ms. Macy Woolf is a God fearing woman. She always looks on point and she never lets her illness get in the way of having people in her life. She is extremely humble and friendly. Seeing her be with others and seeing how she cares for them is a heart warming experience. I aim to be as selfless as she is.
Last but definitely not least, Payton Allen. Bubbly and full of life, she makes you feel wanted and loved. She has a smile that is contagious and a heart bigger than Texas. So naturally she would have to live there. She is encouraging and positive. She helped me conquer my fears. She has such beauty in her. I hope life has great things in store for her.
I know that this is very long but I hope you read it and know that we are all just human. That we don’t always see the bright side but we are shown the beauty in things that normally would be looked over. That we see things that others don’t. We are all different, with different pain and different experiences and different expressions of love. And I hope you see that we are trying our best to be the people we are, not the sickness that haunts us.