This past week, you may have noticed I did not post a blog. I know I know, it killed me too. But there was a reason. I had a different project come out into the world not too long before. I am going to tell you the story of why I decided to do this and why it was one of the scariest things I’ve ever done.
Please first, take a watch:
Yep. I created a video that was a letter to others who are suffering from Complex Regional Pain Syndrome. Why would I do something like this? I’ve been through every judgment in the book and then I turn around and post something that exposes me even more. Why? I sat right where I am now asking myself the same question. I finally found the answer. To show that there is still life in me. Per usual, let me tell you a story.
When I was 17, I would stay up late trying to find others like me. I wanted to see any sign of hope that it is possible to live the life you want even while having CRPS. Now, a cure is what I wanted, but even knowing I could live while I was waiting for a cure could save me. I remember sitting on my bed typing in Youtube every version of the same sentence:
- “My life with crps”
- “Living with crps”
- “Journey with crps”
- “CRPS vlog”
- “Inspiration crps”
That list can go on and on. I hardly found any results and even when I did, they were all centered around the pain. Even then I knew that was not helpful to me. I couldn’t bare to listen to someone else talk about it. Even while having the pain, I knew that it was something no human should go through. Suddenly one night, while I was doing my typical search for hope, I came across a video titled: “What it’s Like Being in a Coma”. Now I’ve never been in a coma, so just like every other person, I clicked it out of curiosity. Things we don’t know about are always the most interesting to us. It was a girl talking about what it was like for her while being in a coma (self explanatory, I know- but I want you to keep up). There was something about her that I really liked. The way she talked was so interesting to me. Naturally, I clicked her channel and noticed she talks about all sorts of stuff. Her name? Claire Wineland.
If you don’t know who she is, please- stop reading and go watch one of her videos. Anyways, I stayed up so late just binging every one of her videos. She was just what I was looking for. The only difference? Her condition was Cystic Fibrosis. Nothing like Complex Regional Pain Syndrome, but that didn’t matter to me. She was someone going through something painful and life changing and still living and happier than ever. As I was binging, I came across the video entitled “Don’t Wait to be Healed to Start Serving Humanity”. It was one of the many Ted Talks done by Claire. As I was watching, I felt completely different. This video was speaking to me much more than other of her other videos. It wasn’t until closer to the end that she said something that would change my life. She said “I became the person that little me would have been inspired by”. I want to take a moment and let that sink in. Currently I am already tearing up. That’s how much those few words meant to me.
So, in that moment, I wiped the tears away and finished the video. I then pulled up google and searched Claire Wineland. I wanted to see if there was a way for me to contact her or even go to one of her talks. The minute I clicked search, I see that bar of news come up. The article I clicked on read that Claire had passed away the night before. A week after undergoing a lung transplant. There aren’t words to describe how fast I broke down. I was covered in head to toes in chills (like I am right now). It was one of the most surreal experiences I have ever had. I remember thinking that night that the quote Claire reached me with- I would live by. I would eventually be the person that my younger self would have been inspired by. I knew it would take a while because I was so deep in pain and suffering, but I didn’t care. Claire didn’t care and she lived her life to the fullest.
I have wanted to create the video above for years. I wasn’t in the place and didn’t have enough knowledge to create it. If you know me, you know I am a very real person. I don’t like to pretend to be something I’m not. Anytime I would start working on the video, I would put it away because I simply could not show the world that you can live with pain because I didn’t believe that. Up until about a year ago, I believed that CRPS needed to stop in order for me to live the life I want. That just wasn’t the message I wanted to send.
About 2-3 months ago I tried to start the video again. As soon as I started I realized that this would be the time I completed it. I worked so hard making sure it was the video that my 17 year old self needed. I knew I would have to be honest because at 17, I was never going to believe some story about once you accept the torture it’s all rainbows and sunshines. I trusted in my past self, and it paid off.
That’s why. That’s why I made the decision to show the world just glimpses of my suffering and pain. All that I have been hiding is now out. So many people didn’t know that I had to relearn how to eat and zip jackets and cook. Even my closest friends were shocked to see footage of me in treatment. It’s just what I never wanted people to see, until now.
I’d be lying if I asked some people not to watch it because I am afraid of judgment. I have had people un-add me on social media immediately after the video came out. I’m sure you are thinking that’s not a correlation, but sadly it most likely is. I’ve had some people (some as in 1) tell me that they won’t ditch me just because I show just how “bad” my disability got and for that I am forever grateful.
It’s just worth it to me now. I know I will be able to help more people by sharing more of my story and what my life ACTUALLY looks like. In some points, this blog just isn’t enough. I know this blog wouldn’t be enough for 17 year old me. I need to see it to believe it. Well followers, here it freakin is. All my pain, suffering, tremors, fears, relearning, and so much more is out on the table. So pick to learn from me or not-it’s not about me. It is about that 17 year old me out there today searching for their Claire. I can never do the incredible things Claire did, but I can sure as hell try.
Please consider donating to the Claire’s Place Foundation. Help others that Claire wanted to help. ❤️