by Missy O | Sep 21, 2022 | Broken But Good, Personal Updates
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Living with a disability that involves possible seizures, paralysis, and tremors forced me to become conscientious about the records I keep as figuring out my triggers, keeping track of my medication, and keeping track of my seizures have required me to spend a lot of time keeping good records. Through spending a lot of time on YouTube, exploring the bullet journal community, and reading many books over the past year have led me to use my current planner system. Living with ADHD, I find I need to change it up every few months. Today, I want to share with you how I use my planner (which you can check out here) to make my life easier while still keeping track of all the aspects of my health that help me be able to do more with my life.
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by Missy O | Sep 14, 2022 | Broken But Good, Personal Updates
After spending a whole post about how it’s okay to label yourself as disabled, I feel like it’s only fair to give you a glimpse into my life as a disabled writer. This week, I’m going to give you a glimpse into how a typical day goes and ways I’m working to protect my health every day. I want to do this to show the power that allowing yourself to identify as disabled can have and to help others who live with disabilities feel less alone in measures they need to take to take care of themselves.
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by Missy O | Sep 7, 2022 | Advocacy, Broken But Good, Challenging Beliefs, Community
This morning I woke up to find Twitter abuzz with excerpts of JK Rowling’s latest book, The Ink Black Heart. In this book she makes harmful and sweeping generalizations not only about trans people but also about disabled people. Some of that is existing in Britain where access to healthcare is more available than it is to the average American but some of it was blatantly harmful views being spewed from a highly revered platform. I wanted to take a bit of time to use this platform, not to signal boost her hateful rhetoric but to provide you real talk from an actual disabled person about the power of accepting that you are disabled and what allowing yourself to accept that label can unlock in your life.
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by Missy O | Aug 31, 2022 | Challenging Beliefs, Community
I have been really struggling the last week with my disability, so this post may look a little different from normal. After the writing conference I went to, I could feel some strain injuries in my shoulders and pectoral muscles. When my monthly seizure window joined the party, I really avoided writing or doing much besides listening. I watched YouTube videos ranging from many creators complaining about double standards to tarot card readings from some of my favorite readers to listening to therapists talk about how to improve your life.
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by Missy O | Aug 24, 2022 | Accessibility, Advocacy, Broken But Good, Community
In my last blog I talked about preparing for a writing conference. Now, I’ve come back from that writing conference which was centered on the idea of using writing to change the world. While I enjoyed the conference and will probably share insights I learned in coming weeks, I realize that being able to go to the conference took a lot of effort to overcome the issues my disability provided. I ended up making choices multiple times between taking part with everyone else and taking care of my health. Because of that, I wanted to cover ways we can overcome the barriers our disability creates so we can take part in more things that matter to us.
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by Missy O | Aug 17, 2022 | Advocacy, Community
Self-care is a booming industry, especially as many people are facing burn out. While many of the things that first come to mind with self-care are expensive, there is self-care that is inexpensive and helps us to care for our needs. This is especially true when you live with less energy available to you. That act of self care is learning to set boundaries. Most people aren’t taught how to set boundaries and may even view it as a selfish move that moves them away from others. However, when you set good boundaries, you can actually allow yourself to be closer to others without sacrificing yourself.
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by Missy O | Aug 10, 2022 | Broken But Good
I love tabletop role-playing games for two reasons: the fun game mechanics and collaborative storytelling. At the table, the dice determine how well you do. It creates moments where a character made to be brilliant can fail while the person who threw a roll for the hell of it can succeed. In life, like at the table, we have setbacks. When you live with a disability, those setbacks can have a bigger impact.
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by Missy O | Aug 3, 2022 | Advocacy, Challenging Beliefs
Many people with chronic illness have stories about doctors who dismiss health concerns, chalk everything up to their chronic illness, or are told their illness is all in their head. When you just receive a diagnosis or are trying to get a problem diagnosed, it’s easy to forget about the power that you have in your medical journey. While doctors are experts in their field, you are an expert in your own body. The best working relationships come when the doctor and the patient work as a team. The quality of the doctor you find is all a matter of luck, but you can take some action to protect your health when you are struggling to find a supportive medical provider.
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by Missy O | May 25, 2022 | Challenging Beliefs
Living with a disability is hard. Often, disabilities are invisible or misunderstood by people that don’t experience them. Pulling together my experiences, here are 5 things I’ve found about disability that most people don’t understand.
1) Someone Else Has It Worse
This is probably my biggest pet peeve with my disability. People will tell me that I don’t have it that bad or that someone else has it worse. Neither of these are helpful to anyone at all. Just because someone may have it worse doesn’t mean that I am struggling any less. Someone else being fully paralyzed does not erase the difficulties I have with my hand becoming paralyzed for an hour. Life is not a contest. Stop trying to make it one.
2) Oh but this (other task I see as similar) was fine
If you have a disabled person in your life, you may find that you think they are okay to do something when, in reality, that thing is an enormous struggle. A good example is that for a recent family trip, the idea of going to the zoo and the idea of going to a farm were both tossed out. Most people won’t see a difference between these two tasks. You are going to do stuff with animals and maybe plants and have lots of outdoor activities. But when I look at the tasks, the zoo seems doable, and the farm seems like it would be extremely challenging. I would venture that I couldn’t do the farm without help. Why? Because the zoo takes more measures to be friendly to people with disabilities. They have more paved roads instead of gravel paths. This can make a difference to people who walk with help or people who use wheelchairs as gravel is just harder to manage than a paved road.
Different days can also play a factor. For instance, someone may have a therapy appointment on Tuesday and need a break after where Wednesday, they would be perfectly fine to go out. Different events take up our limited energy and sometimes just how the week gets to us can play an impact. If you are looking to spend time with someone with a disability, be willing to listen and accommodate their needs.
3) Why can’t you just eat this?
I get this belief. I ask myself this belief every time I want to have fries. Here, I’d rather destroy the fact than the belief but since I can’t, I want to destroy the belief that I should just be able to eat something. I can’t do peppers, eggplants, tomatoes, or potatoes without paying for it in pain. Combing through the menu to find something I can eat at a restaurant is a pain. When I ask for alterations that aren’t hard to make and the restaurant doesn’t honor them, it can destroy my ability to eat a meal. Trying to force ketchup on my hamburger makes it so I can’t eat it. Neither of us enjoys that fact, so don’t be the asshole who tries to force things on someone else. Sometimes there is an excellent reason that they aren’t eating what you are making.
4) Oh You Just Did (Insert Particular Activity Here), I Guess You Aren’t Actually Disabled
I hate disability policing. Yes, there are a few people in the world who abuse the system and ignore disabled needs. But more often than not, disability policing hurts disabled people more than it helps. When people question our disability, it’s exhausting to add proving our disability (especially if it’s hard to see) to whatever task we have set out to do. If we have a wheelchair, it is an expensive tool we likely paid for on our own. If we stand up from a wheelchair, that doesn’t mean we are faking it. I use a wheelchair when I go out for day trips although I can technically walk. The reason I have the wheelchair is that I have more strength in my arms than my legs. When I get tired, I have strong tremors in the fatigued body part or seizures. Using my arms to get around instead of my legs makes it so I can do something that requires a lot of walking without getting as tired. I paid a good amount of money for a wheelchair so I could go out and do things with my family and for my work. I don’t need you scoffing at me because I stood up to look at a trinket in the gift shop before settling back in my chair and wheeling off to the next event. It’s none of your business what I use to make life accessible for me. Stop judging!
5) Oh You Don’t Need (Insert Accessibility Device or Technique Here)
This ties back into my last point. With my wheelchair, I can go to writing conferences and do day trips with my family. With my earplugs, I can go to soccer games and rowdy family gatherings without having a seizure. Having little things that help us handle a situation can make or break if we can do it at all. Without my earplugs, I wouldn’t be able to handle the soccer game or the yelling kids that are my nieces and nephews. Without my wheelchair, I wouldn’t be able to go to conferences unless they were virtual or spend time with my family when they are going out to interesting places. The simple little things we add to our lives allow us to be present and enjoy these events. If you really want to do something with a disabled person, look into ways that you may accommodate them taking part. Some activities aren’t possible anymore, but you can have more options when things are accessible.
6) You Are So Strong/Brave/Admirable For Doing (Insert Normal Thing Here) With Your Disability
Remember how telling me that other people having it worse doesn’t change that my struggle is a struggle? This is the other side of that extreme. People love to tell me I’m so brave for building a writing career while dealing with my disability. For me, it was the next logical conclusion. I wasn’t able to go back to working with kids as I had done before my disability and I suddenly had time that needed something to fill it. When I was a child, I wanted to be a writer, and I had things I needed to say and teach. I started writing to get those things out of my head. I joined a writer’s group so I could talk to people outside of my family and feel less isolated. The writer’s group provided business advice and publishing opportunities. I decided after I got published in a few of those that I could make some money by putting my effort in the right places. With that, my writing career was born. It felt perfect as I could work when I felt good and I could take it easy when my symptoms were flaring up. My computer and notebook also don’t care if I have a seizure in front of them where a small child or their parent may be terrified. People think your life stops when you become disabled. But the truth is it just changes your life. You may need to do things differently, but disability doesn’t have to stop your life from having meaning. Don’t praise people for having a life. We can lift each other up in better ways.
7) Well, since you can do it, I can do it
Forbes Magazine did an entire piece about inspiration porn, the idea behind this point. Check it out if you want to see more specifics of what inspiration porn is. I’m going to assume you know what it is if you are still reading. Just because I adapted and have a life, doesn’t mean that an able-bodied person should take it as a reason that they can do whatever they want. Their struggles are still a real problem for them. Hmm, sounds like my first point about competition. Trying to use my disability to motivate yourself is just hurtful unless you are trying to make life with my disability better or easier. I’m a real person with skills, thoughts, feelings, and struggles of my own. Boiling my life down to my struggles with my disability is demeaning and exploitive. Stop it!
