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.
As some of you may know, I am conducting interviews on brides who have chronic illnesses. This is because when I was planning my wedding, I felt extremely alone. Everywhere I looked, there was no information for someone like me. I knew there must be other girls in my shoes who felt the same way.
My goal is to be as inclusive as possible – it doesn’t matter what makes you differently abled, chronically ill, or disabled, however you may identify – this blog post series aims to shine a light on an underserved group by the wedding industry.
Yesterday, I had the pleasure of interviewing Jenny from Life’s a Polyp. Jenny has two rare diseases stemming from childhood – Familial Adenomatous Polyposis and Short Bowel Syndrome. They give her chronic pain and diarrhea, which can be life-threatening.
Now, let’s go on to the interview!
This interview was lightly edited for clarity and formatting.
Q1. Tell me everything there is to know about your condition & how it specifically relates to you.
Familial Adenomatous Polyposis is a rare hereditary genetic mutation that predisposes an individual to colon cancer due to hundreds to thousands of precancerous polyps developing in the colon at an early age. Those with FAP develop significantly more polyps and at an earlier age than those without FAP. If the FAP polyps are not treated, the individual will inevitably develop colon cancer. Due to the dominant hereditary nature of FAP, the offspring of an affected individual has a 50% chance of inheriting FAP.
There are associated manifestations of FAP as well. These include:
Congenital hypertrophy of retinal pigment epithelium (CHRPE)
Osteomas, supernumerary teeth, odontomas
Desmoids, epidermoid cysts
Duodenal and other small bowel adenomas
Gastric fundic gland polyps
Increased Risk for Gastric Cancers and cancers of the Thyroid, Pancreas, Liver, Central Nervous System, and Bile Ducts
Short Bowel Syndrome is a rare disease that is caused by the removal of or dysfunction of part or all of the small intestine and/or large intestine. Severe diarrhea is common resulting in malabsorption of nutrients and water. This can cause life threatening malnutrition and dehydration.
At age 9, I underwent a total colectomy under the recommendations of specialists due to precancerous FAP polyps beginning to turn cancerous in order to prevent full development of colon cancer. The plan was to have a temporary ileostomy that would later be “taken down” after recovery ending with a jpouch. However, I suffered several surgery complications resulting in the removal of the majority of my small intestine and a permanent ileostomy. During the span of this year, I underwent 5 surgeries and experienced several near-death experiences.
At age 16, I came under the care of a different surgeon and with consultation of my GI specialist, I underwent a 6th surgery to take down the ileostomy and was given a straight pull-thru. The following year, my health unexpectedly began to rapidly decline and I again was not expected to live. After repeated, extensive testing I underwent my final surgery to remove excess scar tissue that was causing a stricture around my intestine. Over the next 5 years, I continued to struggle with my health with frequent hospitalizations and ongoing medical treatments to re-establish my health. I have chronic abdominal pain and nausea due to adhesions, the levels of both issues vary from moment to moment but are worsened by ingestion of food or drink.
Due to the removal of my colon and part of my small intestine, I was diagnosed with Short Bowel Syndrome. This has also been challenging throughout the years as I experience 20+ bowel movements a day that cause my to be able to have quick restroom access as needed. This limits my activities to a degree and is a constant concern. I have medicine to help slow my bowel but it can cause increased pain and even intestinal obstructions so I try to limit its use. I am in a constant state of dehydration in spite of drinking more than 64 ounces a day and require multiple medications in an effort to maintain appropriate electrolyte balance. Years of malnutrition caused degeneration in my neck resulting in permanent neck pain and limited range of mobility.
Q2. What is your wedding story?
I wanted a fun, short ceremony so we had a Blues Brothers themed wedding. The men dressed as the Blues Brothers, the ring bearer had a briefcase handcuffed to him and wore Converse shoes (like in Blues Brothers 2). Everyone danced down the aisle to Blues Brothers music instead of walking down the aisle. My then husband and I were handcuffed to each other when we were pronounced married.
Q.3 What was your venue, how many did you look at, and what factors did you consider in looking at a venue?
I researched online probably at least 50 venues comparing prices and the look of the venue. I only went in person to see two venues – one for ceremony and one for reception. The ceremony was held at the Fort Reno Chapel that was a wooden chapel built by German POWs during WWII that we discovered while participating in an annual ghost tour at the Fort. It was a really beautiful building. It was very cheap as an added plus but that was where my then husband wanted. I chose the reception area a few miles away at an event center that didn’t require much of any decorating and had in house catering, cake and DJ so that I wouldn’t have to mess with additional vendors. I was able to pay for a package that I found within my budget so it was a very easy process. I wanted an easy process within my budget and a beautiful venue that wouldn’t require a lot of decorating to keep stress, money and effort to as little as possible.
Q.4 Did you require any special catering?
No. We didn’t have any diet restrictions. We chose finger foods and cake.
Q.5 Did you have any symptoms on your wedding day? If so, how did you manage?
I have chronic diarrhea and pain when I eat so I took prescription strength anti-diarrhea medication to the full dose and I avoided all food and drink until the reception.
Q. 6 How big was your guest list and wedding party?
We invited about 100 people and had 9 in our party. That included flower girls and ring bearer.
Q. 7 What was your dress like, where did you find it, and was it a certain way to accommodate you?
I didn’t require any accommodations. I had it made from my grandmother’s dress. My seamstress made it into a form fitting mermaid pattern without a train. She kept some of the original features of the dress while adding additional embellishments. I wore jewelry that belonged to the same grandmother and my great aunt to compliment the dress. My mother in law made a mantilla veil for me to wear.
Q. 8 What are 3 things you would like a wedding vendor to know?
One would be if there were diet restrictions that needed to be accommodated.
It would be good for them to know about any mobility issues that may need to be considered for those involved or invited.
Lastly, flexibility where possible such as on timing or ability to take a break from the events to allow for a rest period.
Interested in having your real spoonie wedding featured?
I am working on a top-secret super spy project that involves interviewing brides with different chronic illnesses. Anywhere from AFO wearers, the blind, to Crohns, and everything else, I need info about your wedding.
Email me here to get the ball rolling with the subject line “Wedding Info [your condition].”