Today I share a lovely comment, and look at future ideas. Oh and another recipe!
Featured Image – Sunset, sat on a bench in our village park, just round the corner from our home, so even though it takes me about 20 minutes to get there, it is close enough to give me a nice walk some evenings.
Title Song – The Eagles – Hotel California. This one is for Lindsey (yeah the one from yesterdays blog) Everytime I hear this song I think of her, I can’t really recall why I associate it with her so much, other than the obvious singing along when it was on a jukebox!
A Lovely Comment
So I may be partial to a little bit of ranting, especially when it comes to being ignored and forgotten.
On Tuesday I posted Conceal, Don’t Feel, Don’t Let Them Know, Well Now They Know.
I received this amazing response.
Wow! Lots of emotions! I laughed, I got angry, I laughed again! I said goodbye to two of my “friends” because they thought that my husband was boring, because he is not physically able to walk long distances, he doesn’t like to stay out all night drinking, etc.. I realized they weren’t really my friends. They were only there because I was convenient, once I married a disabled man, that convenience went away. Their loss though, Neil is the furthest thing from boring. He’s super funny, and so cool to hang with, and he makes an effort. It might take all of his energy, but he goes on adventures once in a while. Oh, he’s also a master chef (not really), but he could be!! I’m so blessed to have married a fantastic cook! I wrote a blog post to raise awareness about his condition, you can read that here.
As you mentioned, the able-bodied need to be the ones to step up and raise awareness. To do everything we can to brighten other people’s day! I try to put myself in your shoes. I have this great ability to genuinely feel things on a deep level, so when I read about how much you struggle, my heart physically hurts, and I hate that I can’t do anything about it (I have this uncontrollable urge to fix things, and I understand I’m not the person who can find a cure, and even if I had that capability I couldn’t physically find a cure for every disease, it just isn’t possible, but I still don’t have to like it) I don’t understand how people can be so insensitive.
Yes, you should not have to ask for kindness, kindness should just be handed to you. And not just because you have a disability, but just because your Ben! This nice, funny, well-rounded individual! I wish every person had a heart of gold, but unfortunately that isn’t the case, and I just can’t wrap my brain around it!
I guess I need to learn to “Let it Go” and continue to support the people who I can! I actually read up on CRPS and all that it entails when I first discovered your blog! The only way we can raise awareness, is by learning. I hope more of your followers take that same initiative. I hope you have a fantabulous day!! Hugs to you, friend!
Now I could easily talk about the things mentioned in this response for days. There is so much to reflect on, and I have had to read it a few times to really consume the kindness within its words.
However I just want to use this post to highlight one amazing thing. People! For so many years I hid from people, I was frustrated by people and their voices and views, would irritate and annoy me. I realised that although I did find it hard to understand some people’s views and opinions, the real reason I pulled away was my own fear of being seen as less than able. Fear of judgement and fear of negative reaction.
This reply from Kristian was one of many she has shared over the past few weeks. It really showed me how beautiful and caring people of the world could be. Its scary and hard for me to admit a lot of the things I share in this blog. Every like, every reader is so important to me as it is a sign of acceptance. This message though, this is the bravery of the able. Standing up and supporting someone, telling them that not only are being heard, but being cared for. Taking time out of their own life, to care for a relative stranger. If only the world were made of this kind of people!
I can’t thank the people who have made this public blog so worthwhile to do. It is not only a therapeutic method, but also a sign of hope and future for me. People like Kristian are the types of people who take you from having a bad and difficult time, to feeling cared for and happy.
Every small gesture is amplified 10 fold for me. I sit here, trapped in my body, wishing I could do more, eagerly awaiting every notification that pops up. To receive such heartfelt messages like these are phenomenal. Neil, her husband, and I have a lot in common, both of similar ages and lives irreversibly damaged by disability. To have people like this in the world, makes waking up worth it.
I don’t highlight this message specifically to single it out and devalue the care and love I get from others, but the nature of such kindness from around the globe, is fantastic. It makes me wish more people could be so generous with their love. If everyone was this kind, the world sure would be a better place.
So a massive thank you!
Ideas are flowing, I am writing, I am reading, listening to music and podcasts, learning from the world around me.
I have things I want to do:
- Write a novel
- Write a screenplay
- Record a podcast
- Create a Vlog
The one thing I do realise is that I really want to help others feel comfortable talking about invisible illnesses, I want people to know there is treatment and care available. I want to show what I have learned and hope it can have a positive knock on effect to others.
I am very hyper aware of my limitations however. I don’t have much scope for doing things because of my disability, which also impacts my financial ability to make things a reality. I do have my mind, and a lot of time. So this is a request to anyone who would like to collaborate and work together on any of these things. I understand many people have many different ways of communicating these days so here is some ways you can get in contact with me and we can discuss working together. Also please feel free to use these contacts if you just prefer to chat and discuss anything else you have read.
- Facebook (This will also give access to Facebook Messenger)
I often find myself lacking for motivation, and sometimes we just need another person to help us, plus it can be immensely fun talking about and sharing ideas.
I do prefer text chat conversation, simply because it’s the medium I am most comfortable with. I am becoming more social, so voice chats and video chats are definitely something I hope to be able to do also.
Recipe II – Return of the Slow Cooker
But this time in pictorial form, here is how I ‘Fauxroast’ a chicken:
Then remove and eat in any which way you see fit. Most of the time I cannot cook because of pain or brain fog. So this is great for me, throw it all in and leave it. Then there is most of a meal in the evening ready and It helps me feel like I contributed. Oh yeah and when it is done, you will be left with a crock full of amazing chicken stock, perfect for the most amazing gravies!
It’s actually Lindseys son, Jacobs, last day of primary school today. Off to big school next! So ends one chapter for them, but a new one just begins and they get to see what kind of man their son will grow up to become. So this song needs to be sung, as loud as possible, and if you are capable, i suggest lots of air guitar during the solo. I have however chosen the acoustic live version. When napster was first a thing I downloaded Hotel California to copy onto my minidisc player (I know right, what kind of ancient wizard am I?) I downloaded this version by accident and fell in love with it, I especially love the excitement from the crowd when they realise what song is playing. Enjoy!