I love my beta readers. Without them The Disability-Friendly Wedding Planner would not exist. Most of them are my family, so I owe them my life. However, I struggle with my beta readers from an ideological standpoint. This is something very real.
Before the book changed its name and content, my beta readers were great. They still are great, but with much crappery.
When the book transitioned to The Disability-Friendly Wedding Planner, things changed between me and my beta readers. I told my beta readers I wanted to include men, they responded men weren’t to do any wedding planning. Then, when I said I wanted to include genderqueer people, they responded with, “But they already have wedding books. Everything is already about them. You see them everywhere.”
Them. Them should be a curse word, unless you’re referring to gender-neutral pronouns.
We live in an Us vs. Them world, where many people see themselves as an US, while everyone else is a THEM. Thems are subhuman, immoral, and undeserving of what US have. Us are kind, intelligent, noble, moral, and good. Us deserves their rights and protection.
Ultimately, Us does not understand Them.
There is a way to be a Them on multiple levels, an Us on multiple levels, or partially an Us and partially a Them. This is called intersectionality – the blend of a person’s social identities that either brings them a cocktail of power and/or submission.
For queer disabled folx, they have many blends of social identities that make them a big ol’ THEM to the white, cisgender, Christian folks that have been volunteering to read my book.
Not everyone like that THEMS folx, but a few do. I hope with my book, the thems of the world are exposed as US to somebody – a lot of somebodies – and eventually everyone.
If you are a good person, hit me up in the comments. Please help me with my project. Please please please. Even if you aren’t queer, if you have chronic illness or a disability, this project can help you. This book is a traditional wedding planner for everybody – and I mean every BODY. A disabled body is an every BODY. People never realize it, but in the blink of an eye, the progression of age, anyone and everyone eventually becomes disabled. Just think of your 80 year old grandma, or how I went to athletic and active to occasionally using a mobility aid and unable to walk my dog.
A disabled body is an every BODY, so the book includes everybody.
This month is National Mental Health Awareness Month, and I’ll most likely be posting quite a bit about mental health, as I typically do.
I entered the mental health world when I was 12 – I was being bullied at school and my parents didn’t believe me. Eventually I developed trichitillomania because I was being bullied for my hair, which I grew to hate.
Trichitillomania is compulsive hair pulling. My self-hatred and misery led to a golf ball sized bald spot on the back of my head that I covered by gathering what I had left into a ponytail.
I never particularly cared that I was depressed, angry at my parents, or that I had trichitillomania – I just wanted someone to do something about the bullying. My boomer parents expected me to punch somebody in the face and be done with it. If I had done that, I would have gotten into a melee with the entire school. Besides, it wasn’t in my nature to throw hands.
My mom noticed the pile of hair by my bed growing ever higher, and took me to the GP one afternoon. He promptly referred me to a childhood psychiatrist, who barred me from therapy until I was on stable medications.
I just wanted someone to talk to. I didn’t perceive any of my so-called friends at the time understood what I was going through, and if they did (they most likely could but were unable to articulate, this is middle school here) and would have happily opened up to a therapist. But Dr. Whatserface? No.
Over the course of two years I would come to take 13 different pills a day… all for my mental health. Within four years I would receive a bipolar diagnosis.
Ten years later I developed chronic pain, which has been linked to bipolar meds I can’t get off of for the sake of my functionality.
Eventually the docs would tell me that all the chemical grief I went through as a child and teenager was unnecessary, but hindsight is 20/20. You live with what you are and what you become. Own it.
I hope this article helps a teenager or parent before hauling off their moody but normal kid to the psychiatrist.
The whole point of The Differently Abled Bride Guide is to help people. I want to help people by letting them know they are not alone, provide practical advice and inspiration, and ultimately show the world we exist. We are here, we are loved, and need to be treated fairly.
While I’ve been promoting and asking for research for grooms, a kind fellow member of the Chronic Illness Network informed me that Differently Abled is a slur. When I was in University, before I became disabled, I learned that Differently Abled was how to refer to a disabled person.
I admit that I grapple with the term disabled, as I assume many do, which led to the original title of the book. Usually I rejected the term because of able-bodied friends throwing shade at me or they could not believe that the high achieving, hyperactive, goal-oriented girl who wanted to save the world couldn’t go to the grocery store without a mobility aid because…. she had some Whiner McBabypants fake disease like fibromyalgia. People with fibromyalgia weren’t “supposed to have this problem.” I had something else, it was my husband, I should be a better vegan… You know, I’m sure, if you’re reading this, how it goes.
Honestly I wanted to be able to catch those with invisible disabilities who didn’t have the image of disabled in their heads in this book as they are covered as well. The book also covers wheelchair users, paraplegia, the blind, the Deaf, and other classically-thought-of nomenclatures of disability.
The project is renamed The Disability-Friendly Wedding Planner and will cover brides, grooms, and non-binary folx who are disabled. I need people to interview, so please consider contributing to the project.
If you would like to help my project, email me or comment on this blog.
Experiencing bodily discomfort can be scary, especially if it’s new. At first, you may have no clue what to do. You start out talking to family and friends. Eventually, you consider a doctor. The first visit is more confusing and angering than you expected. Aren’t doctors supposed to be like vending machines? You get the sniffles, you go in and out comes an antibiotic or nasal spray? Why is this so complicated?
That’s because the journey to a diagnosis is a long, hard one. If you’re reading this I can guess you’ve been on WebMD self-diagnosing yourself with everything from leprosy to cancer. You may have even come across fibromyalgia by this point, and you might want to ask your doctor to test you for that. Don’t do that. Fibromyalgia is a diagnosis of exclusion, to be explored in later blog posts, as this is a somewhat controversial statement depending on where you live. It’s basically what you end up with after about a year of tests for everything but fibromyalgia. But there is a way to streamline your diagnosis journey.
For example, I have a severe form of fibromyalgia. It developed over a series of 3 years. There is, honestly, no use in me railing against the medical neglect I received that led to the lack of catching it before it progressed so far. Who knows what might have happened if doctors had seen the tan, fit, blonde pretty twentysomething with a mental health record’s complaints as valid back in 2016? I may have ended up just as severe as I am now. What I do want to do is give you a short regimen for gathering data should you find yourself in a similar predicament.
Know what pain is.
I honestly didn’t know what pain felt like. As a small child, if I fell down and scraped my knee, my mother did not come over, pick me up, and kiss my booboos. Even when I developed endometriosis at age 14 I thought I was just sick to my stomach, light headed, and bleeding like crazy. I could describe what was going on poetically: “Something is clamping on me,” “this burns,” but I never thought of it as pain, because I was taught to ignore, belittle, and never admit pain from a young age. If you can describe what you feel in metaphors, think about people in movies or books experiencing similar situations and if they were described as being painful. If painful doesn’t work for you, think of “this hurts!” Answer “yes” when the doctor asks you if you are in pain if you can pass the metaphor, movie, or hurt test.
2. Keep a log of symptoms.
Buy a little pocket journal. When you get up every morning, write the date. Whenever you experience a symptom – nausea, vomiting, tingling, bowel movements – write the time and the symptom next to it under the date. Repeat. The point of the log is both for you to show the doctor and for you to learn patterns.
Track your exercise in your symptom journal. Do you feel dizzy or lightheaded? How long are you able to exercise? What type of exercise are you doing? Even if you’ve never exercised before in your life, do this anyway. It will give you a more accurate depiction of your endurance. You can even start off just walking at your local mall or around your neighborhood.
Log what you eat, when you eat, in your symptom journal. Your symptom journal should be written chronologically.
When you write your date in your journal, record what clothes you are wearing and when. Make sure you write down the fabric type of the clothing. This can be found on the tags inside your clothes. This can help you see if there is a pattern between what you’re wearing and whether that triggers a symptom. Numbers 2, 3, and 4 are good things to do post-diagnosis as well.
This 5 step list is great for any diagnosis journey, no matter what the diagnosis may be. Remember to be patient and kind to yourself, because most diagnoses take quite some time. It’s okay, many people have been there before, and get off of WebMD!
When you’re stuck in a pain flare, it’s hard to envision the light at the end of the tunnel. Here are some small (albeit unorthodox) ways you can keep your head above the pain for perhaps a little while.
I’m keeping this list short due to the nature of pain flares. Some of you might be frustrated with all the multitudes of things you think you have to try to get out of a pain flare. I will tell you that some of these might help for only some of you, but these are generally good practices. There are no magic wands to make pain flares go away, but there are ways to make us feel more comfortable.
Why I’m Using Spiritual and Psychological Techniques
Generally, pain flares affect your mood, and your mood affects your pain flare. It’s like a dog chasing its tail that catches it and devours itself. Without cultivating positivity, escaping your pain flare is postponed.
Using Your Mind and Spirit to Escape a Pain Flare
Write down (or tell Siri) 3 things your grateful for.
Each day you’re in a pain flare, take out your journal, your phone’s notepad app, a video or voice recording app, or if you can’t move, tell Alexa, Siri, or Google Assistant 3 things you’re grateful for. Pain flares are tiring, and 3 is all you need right now. No need for pages of gratitude to cultivate it.
2. Read your favorite book with a character you relate to the most. Let yourself cry.
If you relate the most to Jane Eyre and her suffering, read it. Relate to how tragic her life is. Throw a pity party and sob. You need the emotional release, but above all else, you need to relate to someone on an intimate, internal, mental level. Your friends may not understand, but you can make a fictional character understand.
3. Connect to a higher power.
This can be your version of God, the Buddha, Jesus, or the Universe. Connect with the energy around you with meditation, prayer, bed yoga (you can find videos on YouTube), coloring mandalas on your phone, or reading holy texts. Knowing there is something bigger than you gives you the peace that you are taken care of and that the pain flare will go away.
This is a little list, and I wanted to keep it small – pain flares can be overwhelming, and someone on the internet screaming at you to do 12 things might make you upset because you can’t get out of bed. You’re most likely phone surfing from your bed. But pain is cyclical, and this too will pass. Hugs to you.
In the past, I was an art student studying graphic design. It was my dream to create beautiful things for others. But then I dated some jerk who told me I was too fragile to spend time in the studio without him, and I switched to the liberal arts.
It was the greatest regret of my life. I vowed that I would never let anyone or anything keep me from achieving my goals.
As some of you may know, I’m in the process of being published. I will be talking about this a lot for more than one reason, namely because it’s an emotional rollercoaster, and anyone who reads this blog knows I am pure emotion. I am 100% F in the INFP.
My post yesterday revealed the staggering amount of rejections I received in a month as well as someone attempting to con me. I’m not giving up, but I do need self-encouragement on my journey.
A weird thing I like to do is go back to my art roots and design dummy covers. Every morning I design about 6 and choose one to three that I like best. I choose my favorite to be my wallpaper on my phone and computer, and the grand slam of the week is printed out and taped to my desk. It helps me imagine a book on the shelf.
I have a creative vision of what the book will look like: delicate, cute watercolors. Because the book covers so many different types of conditions, I wanted a classy way to be inclusive. No bodies will be represented with images. No mobility aid depicted in a pictorial form. Just symbolic representations of what it means to traipse along the wedding planning process in a whimsical way. The book is full of whimsy.
The book needs to communicate that the differently abled, disabled, and chronically ill are people who are loved. People love us. The world needs to know that.
And with my pep talk, I hope you are looking forward to the weekend, and have a happy Thursday.
When I first shared my covers on Twitter, there seemed to be some confusion about “the brides different ability.” This discouraged me a bit about my communication skills. I think this is partially because I am keeping this project a little bit under wraps.
The Differently Abled Bride Guide is a wedding planner book for women with chronic illnesses and disabilities. Differently Abled is the PC term for those conditions, as either of those groups can define themselves as disabled, not disabled, or differently abled.
I am trying to create a one-stop wedding planning resource for women with conditions ranging from fibromyalgia to paraplegia and everything in between. This is why I have been conducting so much research. I want accurate and inoffensive information.
Yesterday, I had some discouragement. I was approached by a publisher who asked me for $20,000 dollars to publish my book.
I’ve never even spent that much on a car. That is a fancy car to me.
This came immediately after my favorite publisher rejected me. So far I have 12 rejections in a month.
I know what I am doing is risky and out of the ordinary. My friends were so encouraging. But I’ll stick to it.
Don’t give up y’all. Some day we’re all gonna change the world. We’re gonna help people.
You live in a black and white world except for four colors: red, green, yellow, and blue. As you look around in your periphery you see patches of green, yellow, and blue if you don’t have trauma. If you do have trauma, you may sometimes see a spot of red that engulfs your vision. When that happens, you collapse backwards.
Every day of your life you wake up a new person. For every past day of your life you have been a different person tainted with the different colors of that day. Each time you wake, you are a grey, blank slate ready for the day. Your past selves wake too and follow you in a line in chronological order. Let’s say you and your past selves get on a yellow bus with mostly blue passengers, but you pass a red building. Suddenly, you collapse backward to the person who saw red in that building on one particular day. Your present day self is gone, and you begin to shake.
This can happen for other memories too – perhaps autumn leaves make you see green, and you acquire green for that day and all your past selves with green autumn leaves collapse backwards and you collectively enjoy the leaves together.
See, I always thought people were always more than just who they are when you meet them or greet them for the day. They are moments upon moments of themselves. This is how I’ve tried explaining PTSD to my husband. I think it’s working.
I notice a trend in my life, in other blogger’s lives, and in human beings in general. It’s of helplessness and hopelessness: being a victim of who you are and your circumstances.
I created this blog to take the stones thrown at me by life and create a castle out of them. For now, it’s what serves me – telling my story not to inspire others, but so that others in similar situations don’t feel so alone, that they may find strength in solidarity.
Oftentimes in the chronically ill community it is said that you have to cut out negativity in your life, and this includes friends. I recently did this with a particularly demeaning and diminutive friend.
She had always struck me as a snaggle-toothed, mousy girl who was kind-hearted but self-absorbed. Day and night she would text me her problems, but didn’t have time for mine. She belittled my diagnoses and insulted my wedding dress.
Eventually she turned out to be racist, sexist, and homophobic. This led me to the ethical questions of being so close to her. Was it wise to be associated with someone who thought such hateful thoughts and assumed they were mine as well when I couldn’t be more different? Is it okay to let yourself be friends with people who are so prejudiced? Does that mean you condone that line of thinking?
Ultimately, a racist statement and her general selfish mannerisms led me to cut ties.
She lived her life thinking she was a victim – always a problem, never having the power to solve it. While demeaning socialism she was a job hopper on minimum wages living with her parents and had a bachelor’s degree from a supposedly reputable private school.
Everything always happened to her. This was how she went from being a newspaper journalist to working at a Goodwill. She didn’t take back her power before power took her.
As for me, I admit I fall into the power trap as we all do at times. Sometimes I curse my pain and how I have no control. We may not have a say in the hands we’re dealt, but we can learn how to play them.
The following is an excerpt from my memoir draft. I was trying to be funny but I think it came out sad. You should let me know.
Nobody ever told me this, but I had the notion I was a fool child.
My parents both had two hour commutes one-way. I grew up in an industrial oil town and was quite literally born in a hospital overlooking a bayou. As I grew up, I would come to play baseball in swamps, and do other generally dangerous things even by 1990s parents standards. There were even a few times I was stopped by police for playing, but I’m getting ahead of myself. Let’s get back to this one point in time, when I was three years old.
Because my parents had two hour commutes one-way, I almost never saw them. I woke up at 3am every day with my father, who I spent the most time with and therefore liked the most. My father had a calm, gentle voice and worked at NASA Mission Control. Sometimes when he worked weekends, which he very often did, he would take me with him. I felt like my own version of a scientist sending rockets to the moon. Now that I’m older, all I remember were the Florida pink walls and the potted palm trees inside the building up the flight of stairs before you made it inside security clearance. It was supposed to make the place look unassuming.
This morning was not a NASA morning. Today I was going to daycare, and I did not want to spend more than 12 hours alone with a group of kids that hated me.
Ever since I could remember at daycare, the other kids were mean. My three year old brain couldn’t register it, but they didn’t understand me and I didn’t understand them. They came from blue-collar working class backgrounds compared to my highly educated parents. My father had a Master’s degree in Computer Science and my mother graduated second in her engineering class from Louisiana Tech with a degree in Mechanical Engineering. This was almost unheard of in the South at her time, the 1970s. I sensed some sort of class difference the day I proclaimed my family was rich because I could see with my two eyeballs that our house was the biggest house in our neighborhood. The kids responded that if I was, I wouldn’t be at this daycare. I had no comebacks. When I told my mother, she chastised me, saying it was never good to flaunt your wealth. Honestly, I just wanted the kids to finally like me, I explained. Mom said that you get people to like you by talking about things they like, but I wasn’t allowed to like anything they liked.
My classmates liked the Spice Girls. I once faked knowledge and attempted to play along. They sassed me, proclaiming that I was Scary Spice. I had no idea who that was, but it sounded bad. Defensive, I explained I was not Scary Spice. I was Princess Spice (who I would in seconds learn did not exist). The girls explained I was Scary Spice because of my ugly curly hair and my mean personality. No, I said. My hair is not ugly and I am not mean. Yes, you are, they proclaimed. Go away.
I was not intentionally mean. I did not know what I did wrong. What was mean? Who was Scary Spice? I needed to investigate.
That evening my parents went to Walmart. I begged to go to the toy section, and they obliged. I saw a set of Spice Girl barbie dolls. Scary Spice was the darker skinned, dressed in black, curly haired doll. I was appalled, but I knew I needed these dolls for science. As soon as I picked up the dolls, my mother shrieked, “Put those down! Those dolls are bad girls. If you get those dolls you will become a bad girl!”
“But my friends want them!” I said boldly.
Now my father joined in, bellowing in his former 1980s preacher voice, “Meara, you have bad friends! They will only hurt you with those dolls! We don’t want you to be a girl like the Spice Girls so you must put them down!”
“How do you know that the spice girls will make me bad?” I sassed a little with my tone.
My father turned red and snatched the dolls from my arms while my mother dragged me out of the store. I was promptly spanked in the parking lot.
The next day, my father woke me up at 3am per usual, but I was numb. A strange liquid formed under my newly grown exoskeleton that appeared overnight. I wasn’t sure what it was, but the whole world knew when he dropped me off at daycare. It was an emotional bomb.
As my father walked me inside the window paned doors, I clung to the doorknob and sobbed. “Don’t go,” I wept defeatedly. “Don’t go, please don’t leave me here.” I slumped to the floor and bawled. “DON’T LEAVE ME HERE. I DON’T WANT TO BE HERE.”
My shot of negativity into the universe was duly answered when playtime came around that day.
It was clean-up, and I was sassing the “Everybody do your share” song as was my custom, when four little tykes ambushed me, put me in the toy box, and sat on it. I banged against the top. My meager three-year-old arms were not strong enough for four other toddlers. I screamed and cried. Eventually, the box moved, and in front of me stood another nemesis: a teacher.
I didn’t like the teachers, but I had to tell on these kids. But I hadn’t seen who they were. It did happen, though.
“What got you crying today Miss Glum?” the teacher queried. She didn’t use my name. I liked my name. And she used that kid voice my parents never used.
“The kids put me in the toy box,” I whined.
“That’s not possible. Quit lying.”
Quit lying. The story of my life already. My daycare teachers thought I was a liar. So did my Sunday School teachers and my parents. I couldn’t gauge my grandparents but I think I had them perplexed.
This is where I began to die a little inside. Where the darkness crept in. The princess wanted to be rescued, but she was mistaken for the dragon.
It’s dramatic, it’s not horrible, but it’s my life.