Excerpt from The Double-Delight Rose

My mock amateur cover for inspiration

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.

Rating: 5 out of 5.

Give me a rating and a comment below!

Blessings Keep Falling in My Lap

Another experimental cover.

Today I was asked to send in my resume for a writing internship. I listed all of the writing I had done, and I felt a warmth inside me.

While checking my publications at the Mighty, I discovered one article that received over 400 likes. This is a milestone, as only a few before mine broke one hundred.

I haven’t told the husband yet as he watches John Oliver on his iPad, as is his morning ritual, but I am quite excited. Maybe one day I’ll be a thousandaire in the likes.

In addition, yesterday I was told by Offbeat Bride that I had two more articles I was going to be published by them. As a longtime fan of the website (seriously… I was thirteen) I can’t wait to say I’ll have three articles with them and be part of their bride tribe.

Then there is, of course, my experimental poetry book, It’s Okay, Magic Happens.

My book, It’s Okay, Magic Happens written under my old pseudonym and available for $0.99 or free with Kindle Unlimited.

It’s experimental mainly for the fact that it was my coping mechanism for PTSD over 9 years and I only took the good stuff, stuffed it into Scrivener, and wanted to see if I could make a book. I wanted to see if I could learn a new technology. Friends who had read my poetry for years told me to self-publish for about three of the nine years the poems collected static on my computer.

Right now I am working on a bridal book I hope to get traditionally published. Email me for more info.

I am hoping this internship leads me closer to becoming a paid, full-time writer. But I am still blessed even if I don’t get the job.

BIG Project Reveal: The Differently Abled Bride Guide

Those of you that follow this blog closely know that I have been hinting at something big. Something huge that I’ve undertaken, a research project that I hope will change the world.

It’s called The Differently Abled Bride Guide.

I came up with The Differently Abled Bride Guide after mourning my own wedding planning experience and still grieving my diagnoses. What I wanted to do was use these two strange experiences to help other women.

In the media, the female disabled body is never portrayed, and when if it is, it is pitiful or evil. There is a lack of understanding from the outside in, and ultimately a lack of representation. More specifically, there is absolutely ZERO representation of disabled women in the bridal industry.

I decided I would write a book about this phenomenon. I’m almost there. All I’m doing is waiting for permission from the people I need it from and to get in contact with an editor.

This book I intend to go the traditionally published route after I was inspired by friends and professional book people in my circle to do so. I had originally planned a KDP book, but after I shared the idea in real life and was met with high praise, I decided to learn how traditional publishing works. As a result I am now a member of my state’s premier literary society.

It’s been a wild ride, and if you’re interested in learning more or helping out with the research, you can email me.

As always, I designed an amateur book cover using a commissioned watercolor used in the book by redlittleberry who, authors, if you need illustrations is fabulous. My book covers are always meant to be motivational for myself. I think these 4 book covers turned out pretty well. However, I could use a little sensitivity. What do you think? Offensive?
The last thing I want to do is hurt someone, so please give me feedback. Note: this book is an all-inclusive look at people with chronic illnesses and varying abilities.

My 1/3 Anniversary

Yesterday, on 4/20 (I did that intentionally) I had my third of a year anniversary.

My marriage has been a fairytale. But not the easy Disney kind. More like the Brothers Grimm kind or the Central Europe kind, where people become disfigured or disabled in the quest for true love. What I’m saying is, you get your magical happily ever after, but magic takes manna and happiness requires danger.

Bear and I have been through a lot over the past four months. Most of it has been because of my untreated PTSD that I’m just now getting treated. I sought help throughout my life, but because I had it buried so deep within me it exploded on my wedding night.

Today I performed a literal song and dance number to express to Bear my feelings about our situation. Then I decided he just needed to hear that he was a good husband, to keep trying, as I would keep trying.

On the day of our anniversary I went into our back yard and picked two of our roses. I put them in the cup we painted together on our first valentines day. I hoped the effect was special enough to override any of the bad juju we’d been through.

When I picked the roses, I noticed how soft and velveteen they felt. I grew up in a literal rose garden. My mother’s yellow roses and my grandfather’s red heirloom roses climbed the walls of my childhood home.
Whenever I see a rose, I am reminded of childhood play, happiness, and my mother’s love.

I had quite a garden as a child, and I grew up exploring the plants and little critters that came with it. But there were always the roses climbing the walls and flower beds.

Bear isn’t giving me a rose garden, but he is giving me a pergola covered with climbing roses once the coronapocalypse is over. We’re going on a road trip to the best rose seller in the state, and I will pick out my favorites. I’lll most likely be a kid in a candy store.

Anyways, Bear, life may not be a rose garden, but it will be a rose pergola with you. Happy one third of an anniversary!

How My Relationship With My Husband Changed After Chronic Illness: Assorted Roses, Assorted Feelings

Typically I try to paint as positive a light as possible of my husband and I’s relationship on this blog. This is partially because I try to do my part to build up our fledgling marriage, but I need to talk about something some of the recently diagnosed may be experiencing by their romantic partner:

Infantilization.

Your parter is now the parent and you are now the child in the relationship. The equality you once sought and enjoyed is gone.

At first you may have fell into the parent/child relationship out of need or heaven forbid, preference. But you quickly realize that the unequal power ratio is unhealthy and you seek ways to make your partner value you for who you are despite your meager bringings to the capitalist table.

You may be completely disabled. So you go online for activism, community, and to see if you can make a buck that way. Or perhaps you can work part time. But before, you had a job job. And your partner has a fancy job job and multiple degrees.

Distraught by the bullying, mockery, and name calling, you wonder why they fell in love with you in the first place. In your mind it certainly wasn’t your soul and ability to make a vegan gluten free jambalaya from scratch. Otherwise, they’d treat you better.

But your partner is power tripping, and you don’t know what to do other than leave and find someone in the underworld like you.

If you can relate to this, you aren’t alone, and I’m still figuring it out too. Take heart.

I’m Going to DisneyWorld?

My husband and I promised each other when we got married we would do a vow renewal each year and spend our anniversary on a trip together. I always envisioned us going to a beach, sneaking off to a part of the sand, and whispering our vows into each other’s ears.

Yesterday, my husband declared he had loftier intentions.

As I’ve written in previous posts, my dream since I was a preteen was to get married at DisneyWorld. I wanted to be a princess on my wedding day, and most of all, have a full package at my favorite giant corporation’s dollar. But I developed various autoimmune disorders a month after I got engaged to my husband, and had to stay near home.

Husband told me he wanted to take me to DisneyWorld for a vow renewal.

Excited, we went to disneyweddings.com and tried to get our date basically a year from now (December, not April). I know, silly. We should wait for our 50th. But we’ve had a hard year, starting with my engagement. He wanted to give me what I couldn’t have and we deserved to celebrate.

What’s your miracle of the week?

Writer’s Block and Chronic Pain

For the past three weeks, I have been writing and revising a book. During this time the book was all I cared about. I didn’t eat or sleep – I could even ignore pain. Did I hurt like hell? Yes I did. But I put in 12 hour days working on my book in search of the holy grail of literary perfection.

I even hired an editor, who I start with in a week or so. But now the creative flow has ended, and my pain has hit me like a drunken bus driver with a load full of bricks. The stop sign was open, but he kept on driving straight into my measly Honda.

OUCH!

There’s nerves about the book. This time around I’m seeking to be professionally published. I want to know I can do it and there’s no guarantees. This is the bus full of bricks.

I also want my medical leave to be successful and I can go back to school when it’s appropriate – that is, when I have more answers and can manage my pain better – and also write this book to its polished shininess. AAAND this is the bus full of bricks slamming my Honda.

But if there’s one thing Disney movies have taught me is I can have it all, I just have to align the pieces in the balance of life. I don’t doubt Disney, y’all.

Metaphors for Marriage When You Have Chronic and Mental Illness

I once heard a foolish preacher tell a bunch of teenagers, of all people, at a youth rally that marriage is like a fragile baby bird. Maybe this is true if the couple is neurotypical and teenagers, but the analogies that come to my mind are a bit more dramatic and dangerous. My husband is on the spectrum, and I have PTSD, among other issues on top of my chronic pain. Everyday life in our marriage feels more like an action movie sometimes than sweet little delicate birds.

With that information, here are my metaphors for marriage:

1. Marriage is a trip to Mordor  and each of you takes turns being Frodo or Sam.

2. Marriage is a trip to get the soul stone but you figure out a way that neither of you dies (because love) and you both agree to enchant some regular rock there to bring back to the Avengers ( because one of you has magic powers and one of you is a rogue).

3. Marriage is that 80’s song The Promise. Everyday. And you’re in the closing Napoleon Dynamite scene with the tetherball that features that song.

Can anyone else think of other analogies?


After all, love is a battlefield.

Trauma Therapy: Beginnings

My marriage counselor has been urging me to begin trauma therapy for PTSD for about a month now. I’ve been afraid to because Bear and I have been doing so well and I don’t want to have another meltdown. Then COVID happened, and I was even more afraid.

It turns out trauma therapy is not that hard to begin, but I suggest anyone reading this doesn’t do this alone. Please consult your friendly neighborhood psychologist.

Every Sunday, I write in a journal one traumatic memory. Then the rest of the days of the week, I read the memory aloud. On Saturday I read and process the memory with my counselor and my husband.

I’ve only been doing this for two days now and chose a relatively mild memory to start out with as I’m going through a medication change. I need to come up with a list of things for my husband to watch out for. So far, here’s what I’ve got:

  • Sudden lack of communication
  • Catatonia
  • Not wanting to cook
  • Sudden willfulness in my attitude against him
  • Sudden negative talk about our marriage
  • Use of the ‘D’ word (no, not the body part…)
  • Staying in bed all the time

Although, parts of these do sound like a pain flare, honestly. But parts of these sound like my version of a nervous breakdown.

Overall I’m glad I took the plunge while my husband is working from home so I can be monitored. I’ve been told that doing trauma work could possibly cure my pain, along with switching off of my psych med.

It’s gonna be a wild ride!

Real Spoonie Weddings: Interview With the Reluctant Spoonie’s Katherine! Postural Orthostatic Tachycardia Syndrome (POTS)

All wedding images, except for this cover image, are Katherine’s.

Katherine gave me a wonderful love story in her wedding interview – virtual interview Q + A. It was amazing to hear what her husband and she went through to be together. That’s the stuff books are made of ( and I do believe Katherine does have a book – please check out her blog, it’s lovely and very informative).

Katherine was one of my first followers on this blog when it was a wee zygote, and my blog is still in it’s embryo stages. On my last Spoonie Bride post I talked about collaboration. Collaboration can be as simple as supporting someone’s work. So, thanks Katherine!

Now, on to the interview.

Q1. Tell me everything there is to know about your condition & how it specifically relates to you.
I have Postural Orthostatic Tachycardia Syndrome (POTS) which is a condition that causes dizzy spells, chronic fatigue and a fast heart rate. These symptoms mainly occur when you are standing up (hence the postural part) and those with POTS fall onto a spectrum with regards to the severity of their condition. I have a very severe form of POTS that left me bedridden for several years. 


Q2. What is your wedding story?
My husband and I met in our first year and he proposed after just 6 months (he was 18, I was 19). My husband was on a three-year course and I was on a four-year course. We had always planned to get married the year after I graduated from university. However, I developed POTS in my final year and became bedridden almost instantly, so we decided to postpone our wedding until I was well again. When I found out that I had a long-term chronic illness, we had to make a decision on when and how we would like to get married. We decided that we didn’t want to wait any longer as we had been engaged for almost 5 years at that point. We scaled down our wedding plans and I started physiotherapy so that I would be able to walk down the aisle. I planned our wedding in the space of 6 months and made sure that we still had all the little details that we’d originally planned such as themed ring boxes and a chocolate fudge wedding cake. 


Q.3 What was your venue, how many did you look at, and what factors did you consider in looking at a venue?

As we only had a short space of time to plan our wedding, we didn’t have a huge amount of venue options for our wedding reception. We ended up booking the venue next-door to the registry office who catered for wedding parties and had a dedicated wedding planner to organise these events. Everything was going smoothly until I disclosed my illness and requirements to the wedding planner 2 months before my big day. Communications were sporadic after that and they didn’t even show up on the actual day! My Maid of Honour even had to take over and organise the cake.

Q.4 Did you require any special catering?
Because of my POTS, I am not able to drink alcohol so I arranged for a non-alcoholic alternative for myself. Unfortunately, I was still given a glass of champagne when I arrived. I can’t manage large meals, so we chose to have an afternoon tea style wedding reception instead of the standard 3-course meal so that I could enjoy the food without fear of overloading my stomach. 
Q.5 Did you have any symptoms on your wedding day? If so, how did you manage?
I planned the day to minimise symptoms. I arranged to have the ceremony at 2 pm, a time when I am most alert and my morning meds have kicked in. I also sat down for my vows which I thought would ruin the photos, but they turned out great! 
Q. 6 How big was your guest list and wedding party?
We only had 20 people attend our wedding which included close friends and family. I had 3 bridesmaids and 1 brides-man. My husband had 3 groomsmen. 

Q. 7 What was your dress like, where did you find it, and was it a certain way to accommodate you?
I wore a vintage 50’s style tea-dress which I had altered to fit me. I had a coloured petticoat added so that it would look nice when I was sitting down to give a pop of colour. 
Q. 8 What are 3 things you would like a wedding vendor to know?
1. Not everyone is able to have a big wedding. Small weddings deserve your full attention as well. 2. Accessibility and accommodations are not optional and are requirements for everyone to enjoy the day.
3.  Be professional. Educate yourself on your client’s disability or illness to better understand their needs. 

Want more Real Spoonie Weddings?

Read about Jess’ and Jenny’s! If you’d like to be featured, email me at spoonielifestyle@gmail.com.