Often times in our childhood, we are blessed with experiences that we don't fully understand. Precious moments, and memories that Gods graces us with even when we don't fully deserve or understand it's significance. My childhood miracle was not something I truly appreciated until I got Cataplexy (Greek for "suddenly struck down"). Today, I am honored to have the opportunity to write about the one person who taught me at a very young age that I was NOT special.
When I was 8 years old, my mom introduced to me to a new ASL (American Sign Language) missionary named Philip Van Curen. I didn't understand the impact he would have until much later. Elder Van Curen was serving a mission for our church while dealing with a rare and often fatal disease called NF2. But I was 8, and quite frankly, would not comprehend the severity of his disease until I was much older. And unlike most missionaries that my family met and fed, Elder Van Curen would be more than a missionary. In fact, I would be privileged to call him my "family" at the age of 10 when he returned to Arlington, Texas to live with my family while receiving treatment and surgery for his NF2. I didn't fully understand it then, but the minute I met Philip, his body was rapidly deteriorating. NF2 was a vicious and fierce disease that would allow tumors to grow all over Philip, which included his brain, his arms, and his legs. I innocently touched the tumors on his arm, and pushed them with my finger. I was fascinated by the brace on his leg, and the large lumps( tumors) on his forehead. I was surprised when we went out in public and people stared at him. He would tell stories about little kids who cried when we waved to them. My little 10 year old mind could not comprehend the cruelty of the world, and I truly didn't understand why people thought he was so different.
Perhaps the most burned in my memory was the surgeries and how each time he came home from a surgery, his face was more paralyzed, his lips more slanted, and his eyes more drooping. Perhaps I was shielded the most because I was young, or because Philip shielded me from the changes with his amazing attitude and spontaneous dance parties.
Philip was full of life!! He was funny, and goofy, but most of all, he loved to dance! Even though he was profoundly deaf at the age of 12, he still cherished music and his love for dancing. My love for dancing, and my lack of inhibition often came from watching Philip carelessly dance, while using his left hand to pull up his right arm, and singing YMCA at the top of his lungs. He danced at home, at the park, at the parades, and the single dances. I loved him.
Years later, Philip's disease became increasing worse and he had the privilege of moving on. When he passed, I had mixed emotions. I was happy for him, and overwhelmed with my grief. But I struggled to understand the impact he would have in my life.
Then in 2010, one week before my cataplexy set in, I found myself thinking about him as I prepared a lesson for the primary kids at church about the resurrection. I presented the lesson with mixed emotions as I re-processed my grief.
And then Cataplexy (Greek for suddenly struck down) hit one week later. And when I finally realized what I had, I knew that my only choice was to keep moving forward. But to keep moving forward meant to keep living. And to keep living meant that I needed to enjoy life. And in order to enjoy life, I needed to leave my home. My safety net. I had to be vulnerable. And then I remembered Phillip.
I anticipated my first time out in public.
What would people think?
Who's going to tell them that I'm not drunk and passed out?
Who is going to prevent them from calling an ambulance?
What will people say?
And perhaps what scared me the most is:
How am I going to feel about myself?
Going out in the world to me meant opening myself up for feedback. It meant announcing to the world that I have a disease that I don't fully understand and that I have no control over. It meant facing some terrible lies that I started believing immediately after I was diagnosed:
1. You are awkward
Intense diseases or any type of mental or physical trial will quickly teach you that you are different than anyone else. It also lies and tells you that everyone else is normal and that somehow everything you do will be noticeable to them. It tells you that your pain goes out to them and everyone else feels it too.
2. You're going to embarrass yourself
You should be ashamed of who you are. What if you laugh and fall over? What will people think? What if your shirt comes up in the back when you slump over and those stupid low ride jeans you bought on sale expose your butt crack? Don't risk it. Life is so much safer at home.
3. People will feel sorry for you
People will feel bad around you. They are going to feel pity which will ruin their day and yours. They will think you are strange. We don't want them to feel that burden.
4. You look funny when you go out.
Your face droops and you slobber. No one needs to see that. When people see me slobber, they won't know what to say. They wont know how to react. I mean can you imagine having a conversation with someone who is slobbering?
And then I thought of Philip. Everyone could see his disability. Perhaps he was in my life because I needed a close example of courage. I needed an inspiration, and I needed to suppress this fear that was eating me alive inside and allowing my disease to teach me these terrible fears. Even if they are true, they can not be the center of my focus. I had to be like Phillip. I had to dance, "braces, tumors, deafness" and all. I was no longer a bi-standard admiring his courage. I had to find courage. And I believe my courage came from PRACTICING these principles:
1. You are NOT special
Everyone has problems. Stop thinking about yourself! Think about them. Find out what principles they're learning. My guess is, it is very similar to yours. And my guess is, you'll choose cataplexy over their trials.
2. You can control 80% of peoples attitude towards you by controlling your own attitude
Most people are looking for direction when they see someone with a disability. I have the gift and ability to communicate. My attitude can influence their attitude. If I'm sad, bent over, and looking for pity, I'll find it. If I am happy, that has power to influence others too. Yes, people can be cruel, but most of the time, they are ignorant and unsure how to react, so they guess. If I can be an example, it may help.
3. Ask for Gods approval and no one else's
I had to redefine myself daily. It wasn't a one time process. Somedays, I could get ready, and maybe even go to the store with a friend. Most days, I was in bed, unable to physically function. I needed lots of help, and eventually I set up a lifestyle that is different than what any of friends were living.
4. Remember, practice, practice, practice...
Practice may not make it perfect, but if you treat life like a constant practice, every experience doesn't have to work out right. Your experiences are not meant to be perfect. We are here to learn.
So I did it. I went to a restaurant and twenty minutes into eating, I went Cataplectic. The waitress came to our table and asked if I was okay. I listened as my family fumbled and tried to explain my sleeping disorder. We were new at explaining it to strangers. But I was moved and surprised when she said something unexpected.
"I was in a car accident a while back," she said
A great reminder to me that other people experience pain.
"It was hard because I hurt my wrist and it's made it hard to be a waitress." She continued.
A reminder that other people have set backs in their daily life.
"And I need the money in order to make ends meet." Her voice saddened. "Its very stressful. I am in physical therapy and I am hoping to be better soon."
A reminder to me that other people are on this journey. That other people wake up everyday, imperfect, driven by hope.
"I hope she can get help soon," and she walked away to help other tables.
A reminder that other people can make room in their life for compassion even when they have set backs.
This was life changing because I could see the world in a different light. One filled with pain, triumph, compassion and hope.
It was awesome. I didn't have to hide in my home.
I wasn't special after all!!
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