I distinctly remember several people huddled around me, thinking I was mostly unconscious, commenting on how devastated they felt that I would no longer be able to live a full life and likely not get married or find love. I know it was not meant to be hurtful as they were just intensely concerned for how my life would turn out, but I recall thinking at that exact moment the romantic part of my life was finished.
Surprisingly, I was not devastated at the thought of being alone the rest of my life. I had experienced such a full life for 27 years and been deviously mischievous in my romantic endeavors from the age of 14 years to 27 years old. I figured I’d had my fun and I would find amusements in life elsewhere.
I spent the next 5 ½ years building up an impenetrable psychological wall in my head as I dealt with one medical disaster after another year in and year out. About four years into my accident I truly accepted a life of being alone.
While this may sound depressing I was neither sad nor happy, but rather indifferent to the concept of love. I didn’t particularly have very healthy relationships prior to my accident because I was always fluttering around the world, and didn’t have a keen interest on settling down with anyone to begin with.
Prior to my accident I enjoyed being promiscuous (I know I’m not supposed to admit that openly, but hey, it’s the truth!). I had never experienced intimacy in my life before and I figured I was not about to start after my accident.
I truly believed from the bottom of my heart that no man would want to take part in everything that embodied dealing with spinal cord injury. I accepted this idea as part of life and therefore became more, and more closed off to the concept of love as a years rolled on.
To top it off, when I was injured I gained quite a lot of weight for a few years, had pressure sores all over my body, multiple spinal surgeries, was confined to bed half of the time, and was so intensely focused on trying to build a career that nothing else seemed to matter. What I didn’t realize was that I was starting to lose the concept of compassion for myself and for others.
About 5 ½ years into my accident I woke up one morning and just randomly decided to start dating. I know some folks after spinal cord injury jump right back into it, but it took me such a long time to be comfortable in my own body.
Now, I wasn’t actually medically stable at this point as I was in the beginning stages of another major pressure sore that would leave me in bed for a further year because of multiple surgeries. I didn’t really care though as I would take a few hours here and there to go on dates, dated a nice guy for about seven months, but once they left my immediate purview I would forget about them. I’m not sure if this was a blessing or curse, but I had never been extremely emotionally attached when it came to men.
Once I did learn that I was headed in for what was hopefully my last major surgery on my buttocks for a pressure sore I figured I was either going to be in bed for at least another six months or two years depending on a worst-case scenario. Well, frankly, worst-case scenario probably would’ve been death 😉 Regardless, I decided I wanted to go out with a bang if it was going to be my last several months on this earth.
I’m not going to go into the details of my dating escapades as I’ve written about them before, but suffice to say I had multiple gentleman callers to help me explore my handicap sexuality, and my fiance was amongst them.
Despite my best efforts to try and break up with my fiance before heading under the knife, he refused, and told me how much he enjoyed spending time with me regardless of my condition. I really didn’t think men like that existed in the modern age that we live in, but I hesitantly agreed not knowing what the heck would happen to me.
I was literally trapped in a highly specialized bed within the four walls of my bedroom for the first five months of our relationship. It was actually quite a good thing because for the first time in my life I couldn’t use sex as a tool in my arsenal to get close to a man. I actually had to get to know my fiance the old-fashioned way … By talking! What a novel concept that was to me.
Once I started to recover and could get out & about we started to get to know each other on an entirely different level, both sexually and emotionally as well as through fun adventures. For those that know me they are likely to tell you I am the queen of random spontaneous miscellaneous adventures when I am not working my derrière off with exercise, and trying to make a living.
Our relationship progressed very slowly and I don’t even think we said I love you until about six months into the relationship. I did of course mean it when I sent I loved him too, but I still wasn’t quite sure what love meant to me at that point.
It took me an entire year to get comfortable with him to even let him into my room to teach him how I got dressed, dealt with bathroom issues, catheter issues, etc. Basically, all the spinal cord injury issues that are extremely “not” sexy 😉
He was so cool about it and said that everyone has their own unique set of challenges, and mine just happened be physical. He was particularly happy that my issues were not psychological in nature! Well, we’ll see what he says in 10 years!
The point of complete comfort, love, intimacy, and trust came for me when he saw everything I physically had to deal with on a daily basis. I always joke, but up until I met my fiance I would never go out in public or let a man see me without mascara and eyeliner on … Seriously! One day I decided to not wear any makeup and he told me how utterly beautiful I looked, and that he actually preferred me without makeup. It was at that moment I knew I had a keeper; okay maybe there are a few other things that made me know he was a keeper, but that was definitely a big one for me.
I am not your typical traditional female with respect to growing up having these idealized fairytale images in my head of the perfect family, perfect marriage, white dress, etc. I think I am more practical, but I’m not quite sure why I never had those butterfly feelings in my stomach. However, I’m sure glad I didn’t because there is nothing conventional about me, our relationship, or our future plans.
About a year and a half into our relationship we did start talking about marriage and what we both wanted in our lives. Over the next few months we decided we definitely wanted to get married, and by our two year anniversary this past April we started to purchase engagement rings to try on for my little paralyzed fingers, which can so easily get “smushed” if not carefully attended to.
I know many women love the concept of a beautiful expensive diamond engagement ring, but I did not. I personally believe the most important part is landing the man and I don’t need an expensive piece of jewelry to show that off. Now, I’m not knocking engagement rings, but they are just not for my type of lifestyle.
I found these really cool silicone rubber wedding rings that all the active folks these days are wearing, and I absolutely fell in love. We ordered a bunch online, tried different sizes, and found the ones that we liked the best. I also quite like to accessorize my outfits, so I thought having an array of colors would probably be a great idea.
The next piece of the puzzle was to figure out when we were actually going to get engaged. I told my fiance there were three requirements to propose:
- He could not be drunk when he asked
- We could not be at a bar
- We could not be naked or having sex
Other than those three specifications I requested, he could ask me whenever. My fiance is also traditional with respect to family, so I know he wanted to make sure to ask my father, which he did, and be around family when it happened.
In the beginning of August I planned to go to Carolina Beach, North Carolina to a handicap surf event hosted by a very cool nonprofit organization called Life Rolls On. I went last year and it was such a blast. This year, however, both my parents were going to come see me surf, and my fiance’s parents were also going to be there.
We’ve been dating for almost 2 ½ years and it’s hard to believe that our parents had not met yet. We planned a very nice dinner and I had an inclination he might propose, but I did not have any kind of definite confirmation.
After dinner the whole family strolled to the boardwalk, gathered around the two of us, and my fiance got down on one knee, and proposed. I don’t recall the particular details except that he said that we knew each other for 800 and something days, he didn’t want to spend another one without me, and would I marry him?
It was literally the picture-perfect engagement on a boardwalk by the beach at sunset surrounded by people we love the most. Of course we had an hour-long photo shoot, but I love having the pictures for all the memories!
I always think of little fairytale rhymes when coming up with things to write and this is what the two of us concocted for our Facebook announcement post:
“Once upon a time on a boardwalk by a beach …
Where sun was setting with a salty breeze …
An intensely adoring man gathered the family to propose to a delightfully euphoric woman …
To which she happily, blissfully, graciously, and joyfully exclaimed:
” YES !!!”
While we have not made any final decisions we are leaning towards not having a wedding for several reasons. Most importantly, I suffer from severe nerve pain that ramps up at the end of the day, and I have skin more sensitive than a baby’s bottom.
I would be the one likely to plan the wedding as I am the organizer, which I don’t have a strong inclination to do. I’m pretty sure by the end of a wedding day all I would be thinking about would be if I developed any pressure sores during the day & pain levels. I certainly don’t want to spend the day like that! Also, most of my family lives around the world, so it would be difficult for everyone to fly in for just the day.
Therefore, we are thinking of doing something a little bit more unconventional and just walking into a garden with immediate family, getting married, and then spending several weeks in Europe on a kick ass honeymoon. Of course these are just ideas that are floating through our heads at the moment, but definitely in the direction we are leaning towards.
Hope is an extremely important word to me. I have lost hope multiple times over the last eight years and I don’t think there is anything more detrimental to one’s mental health than losing that. I know many folks that are newly injured who want to find love but feel discouraged for a multitude of reasons as I did, and it can feel hopeless. I get it, I really do!
When we do go through these periods of darkness it can be tremendously beneficial to find folks who are more positive at the time than we are. I offer myself as a resource to all those injured to chat, listen, offer advice, or simply just have regular phone chats! Helping folks is one of my ultimate passions in life, and it’s just good karma 😉
- The Fight for Survival – Health Insurance Battle for Medically Necessary Wheelchair Seat Elevator – Final Decision - July 1, 2020
- The Fight for Survival – Health Insurance Battle Tactics for Medically Necessary Services – Part 2 - June 22, 2020
- The Art of Health Insurance Appeals: My Battle for a Power Wheelchair Seat Lift - May 12, 2020
- Aquatic Therapy – The Story of a Paralyzed Mermaid - February 13, 2020
- Intimacy and Romance After Marriage – “Newlywed Life” - January 31, 2020
- The Downfall of Our Healthcare System: A Harsh Reality - January 24, 2020
- Adaptive Technology Life Hacks - August 20, 2019
- BEHIND THE SCENES: From the ICU to Walking Down the Aisle - June 20, 2019
- Affordable Home SCI Exercise Program – Something for Everyone - April 14, 2019
- Wedding Bells & Wheelchairs - February 15, 2019