I understand I’ve been missing these past few months. I’ve been struggling to find a way to be useful and not self-destructive with this blog while suffering from difficult emotions, and I have to say that while my posting regularity may not be up to speed yet, I’m happy to interact with people again.
I am working with an editor on the book, Wedding Planning for Spoonies, and an old family friend with a degree in design is working on my final book cover. Both iterations of the project should be done by January and I hope to release the book six months from that time (with preorders!).
I’ve also created a Facebook page for the book if you’d like to give it a like and a share.
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 email@example.com. The more research the better!
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.
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 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.
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.
Jess was kind enough to go over her heartwarming wedding experience with me today. During these troubling times I know it’s hard to carve out space for collaboration, so I am doubly thankful for her getting back to me with my standard 8 questions.
I am hoping the Spoonie Bride Project will be a great collaborative project where all of us Spoonie gals come together for a bigger goal: turning the bridal industry upside-down. After joining the Chronic Illness Bloggers Network, I am thankful for the ability to connect with other bloggers trying to make a difference – most in more nobler ways than I do – and putting me in communication to better realize my loftier goals.
So, thank you, Jess, let’s get on with the interview. Check out her blog please and thank you!
Question #2 was omitted per request.
Q1. Tell me everything there is to know about your condition & how it specifically relates to you.
I have hypermobile Ehlers-Danlos Syndrome. For me, it means that I manage a lot of leg, hip, and neck pain and my ribs and vertebrae subluxate frequently (less frequently after a year of physical therapy!). I’m fortunate in that I don’t dislocate at all and have done enough strength training that I do not require bracing of any joints. My hEDS really affects my gut, which affects my skin a lot, so I am constantly watching my diet to avoid trigger foods that could cause gut issues and acne/eczema. Stress management is crucial for me too because any stressors (good or bad) will trigger pain, gut and skin flares.
Q.3 What was your venue, how many did you look at, and what factors did you consider in looking at a venue?
Our backyard was our venue. I looked at probably 5 other venues but they were all so expensive and many of them had minimum guest requirements. We never wanted a very big wedding and even inviting everyone we would have liked to have there, we wouldn’t have met the minimums. Plus when we realized that the venue money would be better spent doing a lot of the landscaping we already wanted to do to our backyard, we decided that was the way to go. And the whole stress of planning a wedding at an actual venue was too much for me.
Q.4 Did you require any special catering?
We took our wedding party out to dinner at our favorite local New Mexican restaurant. I was able to special order my food so I could (sort of) stay in compliance with my elimination diet, but I didn’t make too many dietary concessions because I just wanted to enjoy my wedding dinner! I paid for it a little over the next few days, but not too bad.
Q.5 Did you have any symptoms on your wedding day? If so, how did you manage?
I was still having some head cold symptoms and a fair amount of fatigue but didn’t have any gut, skin, or pain flares thank goodness! Everyone was really helpful and all I had to do was ask for help if I needed it. We had already communicated well with everyone about how we wanted to keep things relaxed and enjoyable and everyone really stepped up to make that happen.
Q. 6 How big was your guest list and wedding party?
We had 9 people total, not including my husband and I. And we didn’t really define a wedding party.
Q. 7 What was your dress like, where did you find it, and was it a certain way to accommodate you?
I got my wedding dress from JuneBridals.com. It was the only place I could find the wedding dress I wanted – none of the bridal stores in town had the bohemian/fairy tale style I wanted, or if they had it, it was WAY too expensive. I found a beautiful dress that I love for $200 from JuneBridals.com. It didn’t fit perfectly (even though I put in my measurements prior to placing the order), but it worked out really well. My mom had to modify it a little in the shoulders to make it fit a bit better – I have very slight shoulders which makes it hard to find dresses that fit anyway. Not sure if that’s from the hEDS or just my skeleton!
Q. 8 What are 3 things you would like a wedding vendor to know?
I would love wedding vendors to know how to work with a couple to create a calm, small, intimate ceremony. I didn’t get the impression that I could have that with any of the vendors we looked at. There were too many details, the guest minimums were huge and it all felt too commercialized.
So I guess the 3 things I’d like vendors to know is that not all brides want everything 1. overanalyzed and over-planned, 2. HUGE, and 3. Commercial. I just wanted a beautiful space where someone else took care of the decorations, and I could show up in my pretty dress, commit my vows to my husband, and then kick back and enjoy celebrating with a small group of people whom I love.
The Spoonie Bride Project, my largest social media project to date, has not reached a road bump or a stopping place. I am in the process of interviewing 3 Spoonie brides and will hopefully have their info by the end of the week.
I am very excited about all of this. Wedding planning can feel so lonely – especially when you have a chronic illness or disability – and I hope the Spoonie Bride Project helps alleviate that.
Part of the project is to help vendors understand the needs of this base of their clientele. The 8 questions include the final, “What would you want a vendor to know?”
Today please enjoy Holly’s wedding story on Pink Fortitude. She shared it with me and it is a beautiful story. Do enjoy.
Want to be part of the Spoonie Bride project?
Contact me at firstname.lastname@example.org with the title “Spoonie Bride Project [insert your condition here]” and we’ll get the ball rolling with your interview!