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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8 Reasons Why My Dad Is the Most Important Man In My Life

Forever my number one guy.
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Growing up, there's been one consistent man I can always count on, my father. In any aspect of my life, my dad has always been there, showing me unconditional love and respect every day. No matter what, I know that my dad will always be the most important man in my life for many reasons.

1. He has always been there.

Literally. From the day I was born until today, I have never not been able to count on my dad to be there for me, uplift me and be the best dad he can be.

2. He learned to adapt and suffer through girly trends to make me happy.

I'm sure when my dad was younger and pictured his future, he didn't think about the Barbie pretend pageants, dressing up as a princess, perfecting my pigtails and enduring other countless girly events. My dad never turned me down when I wanted to play a game, no matter what and was always willing to help me pick out cute outfits and do my hair before preschool.

3. He sends the cutest texts.

Random text messages since I have gotten my own cell phone have always come my way from my dad. Those randoms "I love you so much" and "I am so proud of you" never fail to make me smile, and I can always count on my dad for an adorable text message when I'm feeling down.

4. He taught me how to be brave.

When I needed to learn how to swim, he threw me in the pool. When I needed to learn how to ride a bike, he went alongside me and made sure I didn't fall too badly. When I needed to learn how to drive, he was there next to me, making sure I didn't crash.

5. He encourages me to best the best I can be.

My dad sees the best in me, no matter how much I fail. He's always there to support me and turn my failures into successes. He can sit on the phone with me for hours, talking future career stuff and listening to me lay out my future plans and goals. He wants the absolute best for me, and no is never an option, he is always willing to do whatever it takes to get me where I need to be.

6. He gets sentimental way too often, but it's cute.

Whether you're sitting down at the kitchen table, reminiscing about your childhood, or that one song comes on that your dad insists you will dance to together on your wedding day, your dad's emotions often come out in the cutest possible way, forever reminding you how loved you are.


7. He supports you, emotionally and financially.

Need to vent about a guy in your life that isn't treating you well? My dad is there. Need some extra cash to help fund spring break? He's there for that, too.

8. He shows me how I should be treated.

Yes, my dad treats me like a princess, and I don't expect every guy I meet to wait on me hand and foot, but I do expect respect, and that's exactly what my dad showed I deserve. From the way he loves, admires, and respects me, he shows me that there are guys out there who will one day come along and treat me like that. My dad always advises me to not put up with less than I deserve and assures me that the right guy will come along one day.

For these reasons and more, my dad will forever be my No. 1 man. I love you!

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The Problem(s) With 'Autism Speaks'

As much as I would like to believe that this organization means well, I have to face the facts.

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Just about everyone has heard of Autism Speaks, a supposed "autism advocacy organization." Their familiar blue puzzle piece icon is often recalled by many. Just by looking at the name, you can tell it's a fantastic company with a great mission. Or is it?

I never really knew that much about Autism Speaks until I read an article one of my Facebook friends had shared. I was alarmed to see all the ways that they don't practice what they preach. OK, so yes, they do donate to the families of those with autism. However, the amount donated is less than two to four percent. A whopping 40-plus percent of the budget goes to advertising.

Another issue that really sparked my attention was the type of people they employ. A while back, Autism Speaks was run by a board that contained exactly zero individuals with autism or disability. They recently received a lot of criticism for this. One man, John Elder Robinson, who has autism, joined the board but quickly resigned because he discovered that the board had no respect for those with autism.

Another big red flag I discovered was the way they use that big profit to advertise autism: they don't really promote awareness, they promote fear. One mom labeled their marketing techniques as "disgusting," and I couldn't agree more. One commercial titled "I Am Autism" explains it all. It shows like a horror movie including lines like "I know where you live," and "If you're happily married, I will make sure that your marriage fails," and "You are scared, and you should be." There are also many other commercials and clips by Autism Speaks that solidify this opinion. One that really ices the cake is one where a mother states "she contemplated driving off a bridge with her child with autism, but only didn't because she also had a neurotypical child." Sickening.

As much as I love to support those with disorders such as autism, I will never support Autism Speaks. Their mission is definitely not one I could get behind. They are looking for a cure, which is not what the world needs. We need to better the lives of those who have autism instead of trying to "fix" them. Autistic individuals are still human beings, so @AutismSpeaks, please stop treating and advertising them like anything less.

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