Special thanks to @KarenDScotland and @AManWithFibro who made this iteration of the book possible.
I am on iteration 4 of the book. Right now I am awaiting the official MS notes from my editor. But she did send me some more notes in an email. Right now my job is to:
Beef up word count (sitting around 20,000 words which is a bit short after gutting the book)
Make the book more hopeful and peppier
The book’s job is to serve:
the mobility impaired (meaning wheelchair users, cane users, walker users, anything that helps you move, etc)
those who suffer from chronic pain
those who have chronic illness (this is a huge range – and includes those with epilepsy)
I’ve taken a break for a week or two from writing because of various stressors in life and I’m going to take advantage of a calm day of chaos to get back in the saddle again. Thank you to those who have helped me with my interviews and surveys, you are invaluable and amazing.
If you should wish to contribute to the project, email me at firstname.lastname@example.org. The more research the better!
Today, I had to take steroids. For the third time this week I ended up walking around the house using my wedding cane. It was terrible but the steroids helped and I’m keeping my legs elevated.
Another thing about today and the other days of the week I’ve used a mobility aid, whether I’ve left the house or not, I’ve done a full hair and makeup getup, and worn a pretty dress. Yesterday I tried the Pinterest listerine pedicure, which exfoliated my feet but turned them blue, and painted my nails red. I’ll probably stick to Korean feet masks.
Every time I make myself pretty, I take a selfie because of all the extra effort that went into it, especially if it was on a bad day. I am proud of the work it took to doll myself up, whether it’s a pedicure, skincare, an outfit, my hair, my makeup, or a mix.
Going back to being a child, I have found strength in my femininity. Many people denounce selfies as vain, but after my illness, it’s simply me saying, “hey, I did it!”
I’m not looking for attention or accolades. Just the fact that I did it for myself and have something to look back on is enough to help me fight my battle against chronic illness.
Few things have saddened me more in recent days than the unjust murder of George Floyd. First is his death, and second is the response certain Americans have given to the type of protest seen in Minnesota, including the mocking of it.
“It was wrong for him to die but it was also wrong of THEM to riot and burn a Target,” some Americans say.
Who are these THEM? Why are we devolving into US vs THEM language again?
Because it’s about control.
The African American community has been ushered into oppression for hundreds of years. No matter what form of protest they attempt, it’s seen as wrong – taking a knee during sporting events, to now riots. How are they to be heard?
Most people I see denouncing the riots claim to be Christians. I came across this tweet on my Facebook timeline this morning and it makes a solid point:
As someone who is a Christian and familiar with this specific text, I wanted to take a closer look at it, because having some theological background really hits this tweet home.
Jesus Clears the Temple Courts
13 When it was almost time for the Jewish Passover, Jesus went up to Jerusalem. 14 In the temple courts he found people selling cattle, sheep and doves, and others sitting at tables exchanging money. 15 So he made a whip out of cords, and drove all from the temple courts, both sheep and cattle; he scattered the coins of the money changers and overturned their tables. 16 To those who sold doves he said, “Get these out of here! Stop turning my Father’s house into a market!” 17 His disciples remembered that it is written: “Zeal for your house will consume me.”[c]
18 The Jews then responded to him, “What sign can you show us to prove your authority to do all this?”
19 Jesus answered them, “Destroy this temple, and I will raise it again in three days.”
20 They replied, “It has taken forty-six years to build this temple, and you are going to raise it in three days?” 21 But the temple he had spoken of was his body. 22 After he was raised from the dead, his disciples recalled what he had said. Then they believed the scripture and the words that Jesus had spoken.
23 Now while he was in Jerusalem at the Passover Festival, many people saw the signs he was performing and believed in his name.[d]24 But Jesus would not entrust himself to them, for he knew all people. 25 He did not need any testimony about mankind, for he knew what was in each person.
Okay, why are you reading this?
Well, let’s examine what exactly these temple courts might have been. Some theologians, such as the biblical historian Ray Vander Laan, speculate that the temple courts mentioned were the Gentile Courts, where the Gentiles were allowed to worship JHVH in the temple.
Jesus was enraged not only by God’s house being used as a market, but also by the specific place where the money changers were conducting business – the Gentiles could not worship God there in peace. This was ethnic injustice.
So, what did Jesus do? He rioted. Literally.
You could be wrong about the Gentile thing.
But even if I’m not, Jesus did literally do that whole riot thing. He turned over money changing tables. Cash was lost. Is that theft? What is that? Is that looting?
You are thinking in a worldly, not heavenly mindset.
Yes, Jesus alludes to raising Himself from the dead and us all having eternal life through Him. But that didn’t stop Him from action while He was on Earth, as we should not waste our time here.
I think it’s also important to note that nobody understood Jesus when he said, “Destroy this temple, and I will raise it again in three days.” We often misunderstand each other. These gross misunderstandings and exploitations of them are contributing factors of injustice.
You are saying controversial, ungodly things and people will unfollow you.
Yes, I am. But I’m saying them in one of the few ways I know how. And I must say something.
On zoom a very good friend of mine and I have a bible study for just the two of us almost every day. It’s a good way to keep connected, learn more about ourselves, each other, and Jesus.
Right now we are studying Philippians and one of the last questions for the study yesterday was something along the lines of how you learned where you needed to improve and how you could implement it.
I struggle with being joyful, and I told my friend that perhaps being reminded of the joy I have in the Lord would help me. Maybe I could have visual reminders?
Next I recounted an anecdote about Stephen Colbert and how he supposedly kept Hebrews 1:3 on his computer monitor.
The Son is the radiance of God’s glory and the exact representation of his being, sustaining all things by his powerful word. After he provided purification for sins, he sat down at the right hand of majesty in heaven.
Hebrews 1:3 NIV
I could try sticky notes around my office space. Then my friend texted me the verse.
Hebrews 1:3 is pretty deep. It reminds me of the sun and moon, how the sun nourishes all living things and we can walk by night by the moon’s reflection of the sun. And both of these heavenly bodies are, well, in heaven. I know it doesn’t mean that at all most likely and means more than that, but this is an allegory that comes to mind.
Jesus is powerful, and he loves you tenderly. Have a little joy in your heart from that! I’ll try to have some in mine.
My wedding planning book is going through a few iterations right now. I hope to still work with my editor after doing something really really stupid (in a pain flare I should never email people at night). The plan is to focus on mobility aid users and the chronically ill. It casts a wide net. There are many conditions specifically included, but a few from the categories can be chosen to apply to someone whose condition is not specifically listed.
I’m a bit nervous about the rewrite as it’s a blow to my ego, but I have to remember the point is to help people.
I do think this book could be a game changer if I work hard enough on it.
I’d also appreciate comments on whether or not excluding sight and hearing still makes the book marketable, and how much you like the new title.
If you’re interested in helping, email me at email@example.com.
I am back in the saddle again with my book, The Disability-Friendly Wedding Planner, and I’m telling you, it’s gonna be a long road.
The book’s purpose is to help disabled and chronically ill individuals plan their weddings, but I’m not entirely sure it’s doing that right now. I’m talking to one agent who hasn’t gotten back to me yet after submitting my manuscript, and I nervously await the next steps.
Additionally, or not additionally rather, the book has been slashed a bit. It no longer covers as wide a net of disabilities as I had once liked to. Now it only covers mobility, chronic illness, and chronic pain, which when you think about it is pretty huge. There are lots of chronic illnesses and chronic pain conditions out there, and lots of varying degrees of mobility.
I have lots lots lots of research to do, and if you’d like to help, email me.
There’s been a lot of talk about neurodiversity in the media at large in the past few years. 99% of neurodiversity talk has been aimed at the autism spectrum and how autism is basically just fine and spiffy, just different.
While this is good and I’m happy for any positive representation a group is getting, what if I told you there were different ways of being neurodivergent?
Just as autism exists on a spectrum, there’s a spectrum for pretty much everything, from gender to sex to fibromyalgia. And when it comes to neurodiversity, I’d like to introduce you to the horror film of spectrums: the schizophrenias.
If you’ve ever been in a group mental health setting, you’ll quickly realize something: the people with depression quickly achieve “most normal” high status, followed by those with anxiety, then those with a mix of depression and anxiety. I know those with depression and anxiety have rallied for years for representation and less marginalization, and I’m telling y’all, you basically have it in an IOP, therapist’s office, or mental hospital. Then, most people hate bipolar people because they have a fucked up mom or kid who can’t do jack shit. This is in the mental health facility. Still in the facility, the descending rung is borderline personality disorder, because those people WILL fuck you up and run off with your wife or something? Give you heroin? And way down, low in the mud, not even on the ladder, are the folks on the schizophrenia spectrum.
Yes, tumblr, I hate to tell you that there are disorders more than anxiety and depression. I would love to tell you that there isn’t prejudice and privilege within the mental health community. But as within any community, from the disabled to mental health, there is.
You have high functioning and low functioning, moderate to severe. People who are guaranteed to fuck you up. I’m not saying moderate depression or high functioning anxiety are cake walks but they’re walks in the park compared to the schizophrenias. This is due in part to representation. People who are “more capable” have the tools to have more of a voice and gain more respect from their communities. Stigma is generated for other mental health groups due to lack of resources to advocate for themselves.
Typically speaking, if you have time to advocate for yourself, you aren’t working. Which leads to scrutiny from society at large. Unless you can make it your job to be an activist, mental health of any kind gets swept under the rug.
Consider all the spectrums. You’re on one. I’m on several. We’re 15 billion different colors of rainbows. Let’s coexist.
Lately I’ve been getting up at 11pm, 1am, or most recently, 2am, and despite my best efforts, have been unable to fall back asleep. I’ve tried everything from meditation, medication, to alcohol, and I still can’t nod off. Unfortunately I tend to do stupid and impulsive things at night, especially just before dawn. I’ve compiled a list of things for my fellow insomniacs to do while they’re up in the early morning.
1. Read a happy book.
Don’t read anything scary. Not a thriller. Not a mystery novel. A book. A happy book.
2. Try one night cap a week.
I take a shot of whisky when I get really, really desperate. Just one. If you struggle with alcohol I’m sorry I wrote this part and please don’t do this. It doesn’t put me to sleep but it calms my nerves and I actually don’t do stupid things due to my anxiety and rumination.
3. Write something.
I work on my book, The Disability-Friendly Wedding Planner, blog posts, and my 27 memoirs, as well as my running diary.
4. Listen to binaural beats.
These have never in my life put me to sleep but they help with pain and anxiety.
5. Hop on Twitter and make friends.
Twitter is my favorite social media platform. I can spend hours on there discovering new things.
6. Daydream on Pinterest, but only a little.
Pinterest can be triggering for me, so I tend to stay off of it. But sometimes it can be fun.
7. Virtually volunteer.
I virtually volunteer at a few places and get my work done overnight, because I’m going to feel horrible during the day anyway.
8. Play with the doggy.
This is the best part about early mornings. I have an elderly dog, and she’s only active in the mornings and evenings. She sits in my lap, dances around, and acts cute. Unfortunately the affection ends after I feed her at 6am. Gee, I wonder why!
I hope this helps some of you. Insomnia can be a real bear. I haven’t figured out the cure for it yet. We’re all in this together!