Conducting Research: THE DISABILITY-FRIENDLY WEDDING PLANNER

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.

Gasping for Air

Many times I wake up at 2 or 3 AM gasping for air. It takes me a few minutes to catch my breath. The whole time this is going on, my husband is fast asleep beside me, oblivious to the world.

I don’t know what a marriage is, other than it’s a struggle. Sometimes huge explosions happen in a seemingly innocent manner after dinner to be repaired in the kitchen in the morning. There are those times when the explosions last for weeks. Usually that’s because I can hold a pretty hefty grudge.

I don’t want to put myself down. I don’t wanna put anybody down. But it’s down to yourself to get up out of the muck and mire.

Jesus said, “Pick up your mat and walk!” If you want it, you have to receive it.

Those are my thoughts of the day.

These thoughts are echoed in my book, It’s Okay, Magic Happens, available in print and as an e-book.

Real Spoonie Weddings: Interview With Life’s a Polyp’s Jenny

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?

Email me below!

spoonielifestyle@gmail.com