You deserve an apology for my absence. As you know, I have a lot of medical complications and for the last few weeks, I’ve really been struggling. So I am extremely sorry about that! Also thank you to Tay’s Life Unscripted who reached out to me! She is such a lovely lady with an amazing blog 🙂
Understanding the life of someone with a chronic illness can be extremely hard. My job is to help people understand!
What is Ehlers-Danlos (EDS)? EDS is when you wake up in the morning and cannot move. EDS is going through you day and trying the hardest you possibly can to ignore the excruciating pain all over your body. EDS is slamming your shoulder against a locker or wall to get it back in the socket. EDS is the never ending feeling of your joints moving around and you can do nothing to help or stop it. EDS is having so many doctors you cannot count them on your fingers anymore. EDS is having to stay awake all night holding a joint in place. EDS is screaming until your lungs can’t bear it, because you can’t live in this much pain anymore. EDS is having to miss everything a normal teenager does because you have another doctors appointment or have to go to the emergency room. EDS is hell. But EDS is me.
“No one can see the story in my eyes the hurt in my voice or the hunger in my body. All they can see is someone who is happy, quite frankly that’s not me..”
Ehlers-Danlos Syndrome is a ligament condition that makes all my joints loose. Therefore, it’s easy for them to dislocate. It hurts a ton when joints come out. First, you hear a crack or pop. Then I feel shooting pain, then that limb goes numb. No one can image the pain I’ve been through. No one can imagine how strong you have to be to do what I do on a daily basis. So basically, EDS is a pain in my derriere.
When I got diagnosed, a lot of people thought that I would become suddenly afraid of EDS or something. But I was only afraid of the information I didn’t know yet. Because EDS isn’t very well known, I hadn’t heard nearly any information about it. EDS affects every 1 in 20-40,000. I wasn’t that afraid when I got officially diagnosed because doctors had mentioned it before. So the diagnosis just clarified what we already knew… I have Ehlers-Danlos.
I got many different reactions from other people. My friends were confused. My grandparents were worried. My aunts and uncles were sad. My parents were sad, worried and confused. And Maria was very confused. All of my family and friends reactions made me feel so guilty. Because they all have their own problems and I just felt like a burden on them and I felt like they saw me as a mess. But all of them offered their sympathy, more than anything. Nevertheless, I don’t want sympathy. I want to be treated like a normal 14-year-old freshman. But I like to educate others about Ehlers-Danlos, because it’s not very well known.
I felt like a burden on my family. With all the p.t. and the medical bills, appointments and surgeries. I felt so guilty that my mom would have to drive me everywhere. And I felt so bad that Maria had to be dragged all over the place, and miss out on some things that she wanted to do.
I was confused about how easily my joints could dislocate. I could be elbowed the wrong way and a shoulder or rib could pop out. I could be getting out of a chair wrong and a hip or knee could pop out. Or I could just be walking on un-even ground and an ankle could pop out.
I avoided my disease at first because I just wanted to be normal. But then I learned that I couldn’t spend my life wishing for something else! Therefore, I learned to accept my disease, and embrace it. I accepted it because I knew I had to. There is no cure and I will have it my whole life, so I’d better get used to it!
I was angry, sad and disappointed because I had to stop many sports. In addition, I had to give up doing some things with my friends. Like going uptown on early release days, ice skating and going to parties. I had to stop swimming. I had to stop lacrosse, and I had to stop ballet. And I loved all of those things!
Even though I can’t do everything I was still included as part of the group, and I loved that. All of my friends have said that they have a “deeper respect” for me and that I “inspire” them. I think that means that I actually am strong for dealing with this and I do work hard to look for the positives in EDS. All of my friends and family have been terrific with their support for me!
I admit it; I’m a control freak so I liked the aspect of EDS that lets me take control. Like my thinking about it, it’s mental affect on me and my physical therapy exercises. I own my Ehlers-Danlos… It doesn’t own me! With every new problem, I have an opportunity to learn about it, and in case it happens again, I will know what to do.
When I was in school on a wheelchair, walker or crutches, people would stare. I looked weak; I had lost weight, gotten pale, and looked broken. But I began to be confident in myself and kept my head up and smiled at the people who would stare. I would educate my peers, through phone, email, talking and facebook. And eventually I got the word out there that I was not weak, I was not broken. But sill, it was hard for me to express my feelings because I’m not one of those people who can easily ask for help.
I like to use humor to get through hard times. One day when I was walking home from school, I fell and couldn’t get back up. So, I decided to crawl, with a big trumpet in its heavy case and my backpack. I started to crawl home pushing my case. Push, push, crawl was how I moved. Push, push, crawl. Push, push crawl. Meanwhile, people would just walk by and stare. Not even offering to help. After a little bit some guys came along and laughed at me, then started to make fun of me. So me, being who I am, kicked them in the knee’s and as they were trying to leave I yelled, “Ya! Look whose crawling now, ha ha!”
I also use humor when going shopping with my friends.I was shopping one day with friends sales people noticed I was in a wheelchair, most of them just starred. Nevertheless, when we got into Delia’s, a sales lady walked up to me and asked me to tell her what happened. I hate it when sales people are nosey so I told her, “My grandma ran me over with her Harley!” Well that shut her up! And it looked like she even believed it! I love making up things and seeing people’s reactions.
I believe that if you have EDS, you are crazy not to have hope. Because, with this condition I have very low lows, but I can also have good times. People with EDS benefit with doing some activities. For example, it’s very good physical therapy to play a sting instrument. Therefore, I’ve decided to learn to play the guitar. This will help my wrists and fingers to get strong.
My mom calls me the master of distraction. Because when I’m having a rough time, I can pick a distraction at the drop of a hat, and they work too. Some of my favorites are; TV, listening to music and reading a good book.
On a different note, many people say that handicapped people can’t have fun. Well I’m here to tell you… that’s not true! Just because we are handicapped doesn’t mean we can’t have fun too! Like over the summer I went to the Taylor Swift concert, in a wheelchair with friends and we had a great time!
Positive thinking plays a big part in being able to benefit from my experiences. In order for me to cope well, I have to be a person willing to grow and work out a balance for my body, soul, and mind. I try to look for beauty in everything. Even when it rains, I look for rainbows!
I hoped this help to understand… even a little bit!