When Chronic Illness Takes Away Your Favorite Things

When Chronic Illness Takes Away Your Favorite Things

It will hurt every time, but you will survive this
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It hurts the most the first time. That hurt never goes away though. It happens again and again as you lose more and more of your past life to your illness. Sometimes the hobbies and activities that you always assumed that you would keep are lost as well; that is one of the worst pains of them all.

My first loss was cheerleading. After two torn shoulders and surgeries from Ehlers-Danlos Syndrome, it became clear that I would not return to this sport. I've always found a way though. While I may not be able to cheer personally, I have continued to coach 3rd graders on how to compete in the sport I love.

After the loss of this hobby, I began to choose hobbies that I could do despite my illness. I started coaching, writing, learning sign language, and I became involved in politics and special education. I have become an advocate for disabled rights. I have surprised myself with how much good I have made out of the bad. After picking up this series of hobbies that I could do despite my illnesses, I never anticipated losing another activity I loved.

Two days I realized I am truly losing the ability to play my instrument. At my autonomic testing, I blew into a mouthpiece, and my BP went so low that it almost zeroed out. I had noticed for a while that something was wrong. I knew that I could not make it through warm-ups without a break which was not typical. I also had begun adjusting to breathing more often in my pieces. I did not expect for it to get to the point where simply playing a note causes me to pass out or become incredibly nauseous.

It is devastating to lose something you love, especially when it happens over and over again. This is the sad truth of being chronically ill though; you will lose major pieces of your life and identity along the way. This was not the first passion I lost, and I am sure it will not be the last. It does not mean that it did not hurt any less though. You don't "get used to" feeling sick every day of your life. You don't "get used to" losing friend after friend, passion after passion. You never "get used to" the loss that chronic illness overwhelms you with.

I know that I will get past this as I do with every loss. I am constantly losing abilities and parts of my life, but I am also constantly gaining. I gain new spoonies. I gain new forms of advocacy. I gain a better understanding of life.

To any other spoonie experiencing this, it will be okay. You will find new passions. You will find new people. You will find a new purpose in life. It will just take some time. Enjoy what you have while you have it; you never know when it will be taken from you.




Cover Image Credit: Aidan Meyer

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30 Things I'd Rather Be Than 'Pretty'

Because "pretty" is so overrated.
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Nowadays, we put so much emphasis on our looks. We focus so much on the outside that we forget to really focus on what matters. I was inspired by a list that I found online of "Things I Would Rather Be Called Instead Of Pretty," so I made my own version. Here is a list of things that I would rather be than "pretty."

1. Captivating

I want one glance at me to completely steal your breath away.

2. Magnetic

I want people to feel drawn to me. I want something to be different about me that people recognize at first glance.

3. Raw

I want to be real. Vulnerable. Completely, genuinely myself.

4. Intoxicating

..and I want you addicted.

5. Humble

I want to recognize my abilities, but not be boastful or proud.

6. Exemplary

I want to stand out.

7. Loyal

I want to pride myself on sticking out the storm.

8. Fascinating

I want you to be hanging on every word I say.

9. Empathetic

I want to be able to feel your pain, so that I can help you heal.

10. Vivacious

I want to be the life of the party.

11. Reckless

I want to be crazy. Thrilling. Unpredictable. I want to keep you guessing, keep your heart pounding, and your blood rushing.

12. Philanthropic

I want to give.

13. Philosophical

I want to ask the tough questions that get you thinking about the purpose of our beating hearts.

14. Loving

When my name is spoken, I want my tenderness to come to mind.

15. Quaintrelle

I want my passion to ooze out of me.

16. Belesprit

I want to be quick. Witty. Always on my toes.

17. Conscientious

I want to always be thinking of others.

18. Passionate

...and I want people to know what my passions are.

19. Alluring

I want to be a woman who draws people in.

20. Kind

Simply put, I want to be pleasant and kind.

21. Selcouth

Even if you've known me your whole life, I want strange, yet marvelous. Rare and wondrous.

22. Pierian

From the way I move to the way I speak, I want to be poetic.

23. Esoteric

Do not mistake this. I do not want to be misunderstood. But rather I'd like to keep my circle small and close. I don't want to be an average, everyday person.

24. Authentic

I don't want anyone to ever question whether I am being genuine or telling the truth.

25. Novaturient

..about my own life. I never want to settle for good enough. Instead I always want to seek to make a positive change.

26. Observant

I want to take all of life in.

27. Peart

I want to be honestly in good spirits at all times.

28. Romantic

Sure, I want to be a little old school in this sense.

29. Elysian

I want to give you the same feeling that you get in paradise.

30. Curious

And I never want to stop searching for answers.
Cover Image Credit: Favim

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I Found My Voice When I Was Diagnosed With Muscular Dystrophy

How I became a writer

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I have always had a love and passion for writing since I was little. Probably as early as third grade. I would always write makeup stories about monsters and typical third-grade stuff. My third-grade teacher, Mrs. Strobbe saw my potential. Her class was hard but it pushed me to become a better writer. Rarely anyone got an A in her class and I had received an A in that class. Then as time went on, I pushed away from writing just because I didn't think I could make way with a career of writing - obviously I was wrong.

I began on the teaching path the rest of my elementary years. (Yes, I've had an idea of what I wanted to do when I was just in elementary, call me crazy.) In 6th grade, I still thought teaching was the way to go. At the time was going through a rough patch- getting spinal fusion and getting diagnosed with MD. It was a lot for a 12 or 13-year-old to handle. I had a lot of thoughts and feelings.

My mom had encouraged me to write again whether in a blog or writing in a journal. I had decided to write in a blog and it felt really good to write again. I only talked about my surgery because I wasn't quite ready to share the whole MD ordeal yet to the whole world. Close family knew but my friends had no clue.

I got into high school and students even teachers would ask me "Why are you riding the elevator?" Why this and that. I didn't really share much because I was afraid people would think differently of me. But I was tired of people asking me. I then wrote a piece on social media and put my story out there for the world and it felt amazing. I finally found my voice and I was loving writing more than ever. It was because I had the courage to speak up and stop hiding. I needed to share what I have been through and teach people to learn to embrace what they've got no matter who you are. I wanted to be the person to make a positive impact on people who have diseases and those who don't understand what it's like having a disability through the power of writing. I wanted to have the power to tell people's unique stories who may be afraid to speak up for themselves or share their story.

My goal when I write is to hopefully make a difference in someone's life or just someone that can be relatable. In high school, I am also highly involved in publications ie being Co-Editor-In-Chief for the Magazine for the last four years and it was a huge game changer as well, I never thought that I could make a living and realistically have a job In the journalism field. Being in publications was an eye-opener. It lead me to so many opportunities- writing for Newsboys, going to Mizzou for Journalism field trips etc. It made me fall in love with writing even more than I had. For me, writing is everything to me and I know I wouldn't be the same person or even the writer I am today without sharing my story.

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