(This was posted Feb 16, 2024 - but I thought it was such a great topic that I wanted to repost it.) Please don't judge me based on my good days. Looks can be deceiving for someone with a chronic illness. What looks like a good day might actually be a good day. Or it might be a good few hours. Or it could be someone doing their best to function through the pain. You don't honestly know what someone is going through, especially when they have lived with the pain for a long time. You'd be surprised how much pain people can learn to smile through. Read the full article at psoriatic-arthritis.com
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Embrace the Imperfect
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Originally I had another post planned, but last night a friend shared this video from YouTube and I had to share it. I feel that it's very important to not only those who are chronically ill, but everyone.
I know some of you won't take the time to stop and watch- I don't blame you, I have tons of things to work on too and don't always have the time or ability (ex. Whilst using a mobile device) to watch. Thus, I'll tell you.
A man named Phil Hansen wanted to become an artist and went to art school. Unfortunately for him, he was unable to draw a straight line. Phil's hands would constantly shake. He kept trying though, and would clutch the pen tighter and tighter to attempt to steady his hand. It didn't work, and caused him a lot of pain. Phil would drop out of art school and gave up on his dream of being an artist. Later, he would see a neurologist and was diagnosed with nerve problems, making it obvious why he could only draw bendy lines. When he told his doctor this, his doctor said,
"Why not embrace the shake?"
That's what he did. Phil made wonderful pictures with squiggly lines and odd shapes. Later he found different ways entirely of making art: Using his feet, doing karate chops, and all sorts of great ideas. Phil found a way to do what he loves despite his obstacles. He doesn't want to be perfect: He wants to embrace the imperfection.
It's because of people like Phil that I have confidence in doing art despite my obstacles. I hope you never give up on your dream despite your obstacles.
Wow! Thanks for posting that video, it's definitely worth the few minutes it takes. His artwork is amazing and it's inspiring that his own limitations inspired it!
On a much smaller scale, I've allowed my chronic illness to touch my writing. When I first became sick, I searched for novels featuring young characters who had a form of arthritis, but you know what I found? Nothing. Not one book. This inspired me to spread awareness in my own writing and now all of my books include at least one character who has an autoimmune disease of some kind.
I also used to make beaded jewelry, but when the pain went to my hands, it was a hobby I had to give up, much to my frustration. It was something I was good at and something I loved doing, so having to box up my supplies, knowing I may never use them again, was depressing. But then I found a new form of art, one that didn't cause me pain, and it's called quilling (a paper craft). It's something I never would've discovered if I hadn't had hand pain! :)
I enjoyed it as well, and immediately wanted to share!
Haha, I've been doing that in my fiction writing as well. I think it would be interesting for a change to read about a person who has an autoimmune disease or something, and especially from their point of view.
Although it's not an arthritis book, but rather a cancer story, I highly recommend The Fault in Our Stars by John Green. It doesn't always feel like a cancer book, it's more like a patient book. I laughed, cried and related probably more than I should've. I know tons of [healthy] people who read this and loved it. It's an amazing read.
That sounds great! Any arthritis friendly hobby is a good one: I'll have to look up quiling. Since my hands weren't affected with pain, I really began picking up independent things during my diagnosis and early treatment: I learned guitar and began drawing for studies. That's taken me very far. :)
thanks elizabeth for this awesome blog post as usual :) the video wasn't working for me so i looked it up and it is AMAZING!!!! Hi Arianna!!! That is so funny, when I was first diagnosed I looked for books with arthritic characters too!!! It has always been a dream of mine to write a novel too! Well I had a lot I trouble finding books as well and then I remembered a book I read in grade 5. I remember thinking " what a terrible disease to have " as I read the book. I guess fate has a sense of humour as 4 years later I now have that " terrible disease ". The book is called Jodie's Journey by Colin Thiele! I actually really enjoyed it, though I cried a little so keep tissues handy!!! :) good luck ~ Eryn
I'm going to have to check out the book too! I'm a huge reader, haha. I've found a book called The Fault in Our Stars by John Green is oddly relatable despite the character having cancer. It's funny how these things tie in together sometimes. Oh, and thank you! :)
I've had a wide variety of physical therapists in my time. My first was a young woman. I had to go to Physical therapy for a few weeks to recover from a flare when I was eight. She was very nice, and I don't remember too much actual 'work,' because mostly it seemed like we played games and such. :) My next physical therapist came when I was about twelve. She was an older woman who always started out sessions by loosening my hip. She was very nice indeed, though she did not tolerate when I started giving up the last few minutes of the session: I had to be giving way more than humanly possible at ALL times. Sometimes I wondered if this was like military training. I had another physical therapist around that same time. He was an older man and very kind. I remember we had a lot of laughs. After he taped my feet so I wouldn't be so flat footed, he informed me I could stop walking like a robot. I only saw him a handful of times, though I did like when I got him. ...
I've been doing a lot of writing on this blog about why the past few months were so difficult for me. But this is, by far, the most significant thing that happened to me. While I'd like to say this is something that is 'over and done with,', I can't: This is still something I'm dealing with. I'm actually nervous to share this post so publicly because I'm scared of the responses I'll receive. Please try to understand. Fall semester was supposed to be amazing. I was going to hang out in all my favorite places with all my favorite people. But instead, it ended with me afraid to leave my room and almost completely isolated. My perfect semester was interrupted by him . I don't know if he likes me or is obsessed with me, but regardless, I find he likes to be in my company. Often, without my knowledge. He's walked behind me and followed me home. Sometimes, he sees me approaching my apartment building, sprints to the entrance and waits for me...
Ironically, for someone who shares my medical experiences online, I am a very private person in real life. There are some details about myself I'm quick to share, like being a crochet enthusiast! But there are several things I keep private, one of them being that I have psoriatic arthritis (PsA). Click here to read the full article at Psoriatic-Arthritis.com.
Wow! Thanks for posting that video, it's definitely worth the few minutes it takes. His artwork is amazing and it's inspiring that his own limitations inspired it!
ReplyDeleteOn a much smaller scale, I've allowed my chronic illness to touch my writing. When I first became sick, I searched for novels featuring young characters who had a form of arthritis, but you know what I found? Nothing. Not one book. This inspired me to spread awareness in my own writing and now all of my books include at least one character who has an autoimmune disease of some kind.
I also used to make beaded jewelry, but when the pain went to my hands, it was a hobby I had to give up, much to my frustration. It was something I was good at and something I loved doing, so having to box up my supplies, knowing I may never use them again, was depressing. But then I found a new form of art, one that didn't cause me pain, and it's called quilling (a paper craft). It's something I never would've discovered if I hadn't had hand pain! :)
I enjoyed it as well, and immediately wanted to share!
DeleteHaha, I've been doing that in my fiction writing as well. I think it would be interesting for a change to read about a person who has an autoimmune disease or something, and especially from their point of view.
Although it's not an arthritis book, but rather a cancer story, I highly recommend The Fault in Our Stars by John Green. It doesn't always feel like a cancer book, it's more like a patient book. I laughed, cried and related probably more than I should've. I know tons of [healthy] people who read this and loved it. It's an amazing read.
That sounds great! Any arthritis friendly hobby is a good one: I'll have to look up quiling. Since my hands weren't affected with pain, I really began picking up independent things during my diagnosis and early treatment: I learned guitar and began drawing for studies. That's taken me very far. :)
thanks elizabeth for this awesome blog post as usual :) the video wasn't working for me so i looked it up and it is AMAZING!!!! Hi Arianna!!! That is so funny, when I was first diagnosed I looked for books with arthritic characters too!!! It has always been a dream of mine to write a novel too! Well I had a lot I trouble finding books as well and then I remembered a book I read in grade 5. I remember thinking " what a terrible disease to have " as I read the book. I guess fate has a sense of humour as 4 years later I now have that " terrible disease ". The book is called Jodie's Journey by Colin Thiele! I actually really enjoyed it, though I cried a little so keep tissues handy!!! :) good luck ~ Eryn
ReplyDeleteI'm going to have to check out the book too! I'm a huge reader, haha. I've found a book called The Fault in Our Stars by John Green is oddly relatable despite the character having cancer. It's funny how these things tie in together sometimes.
DeleteOh, and thank you! :)