ROMANCE RE-DEFINED

Aaron and I are getting married next Saturday, May 18.  We’ve invited 70 of our close friends and family.  Originally we started with only 30 guests, but somehow we’ve ended up with 70 guests 🙂 It’s going to be such a magical day as there are so many family friends I have not seen in over a decade.  We have a weekend full of events to celebrate. We are very excited and scrambling to finalize last-minute details.

Unfortunately, I’ve developed bronchitis at the most inopportune time and have been battling it for the last several weeks.  I have one week to go before the wedding and I am doing everything in my power to get well quickly.

It’s been a challenging several weeks as bronchitis for quadriplegics can be immensely difficult since we do not have abdominal muscles to help us cough up that nasty phlegm associated with bronchitis.  It’s not a pretty sight!  However, dealing with any kind of illness as a quadriplegic requires help from caregivers, family members, and loved ones.  I’ve had a team of people helping me over the last several weeks for which I am extremely grateful.

I have locked myself down in my house for the last 3 weeks and have had many hours to rest, read, and recuperate.  I came across this article written by the New Yorker on the topic of “What Romance really means after 10 years of Marriage.”  The basic premise of the article addressed how the definition of a romance and sexiness changes after a decade of marriage.  This really resonated with me because from the perspective of dating a person with a disability I find that Aaron and I have transformed our definition of romance in just a few short years, which I suspect takes many couples a decade to achieve.

Let me explain.  In the traditional sense I’ve always associated keeping romance alive with making that effort to go on dates together, making sure we maintain an active sex life, keeping the spontaneity fresh, buying flowers for one another, still having the desire to tear each other’s clothes off, and so much more.  This version of romance is all about the thrilling moments to keep the butterflies alive and the passion high.  While it is important, it’s certainly not everything.

I suppose after a decade of marriage many couples don’t need any more proof that they are meant to be together because they have been through so much already.  I am just about to get married and have been with Aaron for three years, and while I still have the desire to tear his clothes off on a regular basis I think we’ve reached a point in our relationship where it feels like we have been together for decades.

You see when you are paralyzed and need help from dressing to bathing to going to the bathroom, etc. both partners have to become comfortable very quickly with all bodily functions that go along with the relationship.  When we first started dating I kept much of what was involved in my care in a separate box.  I only wanted to show Aaron the sexy side of me and to make sure that we got to know one another before throwing in the mix of what is truly involved in being together with someone with a disability in the long-term.

For Example –  

About nine months into our relationship I purchased this really sexy lingerie, decorated the whole house with flowers & candles with one of my friends, and surprised Aaron for a night of true sexy romance.  It was unbelievable, exciting, surprising, and fun.

After about a year of dating we both agreed that he needed to dive into every aspect of my life if we were going to have a meaningful long-term relationship.

And now I’m going to tell you the most romantic story of all

Over the last several weeks while battling bronchitis I have been a complete mess.  There was one night in particular where every 20 minutes I had to get up, put my head in between my legs and cough up some pretty gnarly phlegm.

I can’t do this alone, so Aaron lovingly and kindly sat me up and down, hitting my back, wiping my face, and tending to me for hours on end late at night.

He then quietly stroked my hair as I went to sleep gasping for air.  Throughout the night anytime I coughed or wheezed he was up in an instant.

We were exhausted, but he didn’t complain once, he quietly cared for me and did what needed to be done.

This is the definition of sexy, too! 

A Funny Romance Story

Whenever I wear shirts I were the sticky little boob cups instead of bras.  It’s much more comfortable for me because I have hypersensitivity on my shoulders.

Well, one night at a bar they simply popped off.  I snuck into the ladies restroom with Aaron and we tried desperately to fiddle with the little guys to get them stuck back on my boobs properly – all while having ladies banging on the door to try and get in.

We were laughing, drinking, and I was just thinking about the absurdity of having another man in a public women’s restroom trying get her breasts back in place!

I don’t think many couples getting married have such intimate experiences with one another with dealing what we have to on a regular basis until years after they are married.

Laughing at how beaten down you are sometimes in your tireless quest to survive – that’s romance.  It’s sexy to feel less than totally sexy and still feel like you’re sexy to one person, no matter what.

It’s one thing to have a night of passionate sex, which is essential, but I think it’s true love when it’s 10 PM and you crawl into bed like two old people, tell each other about the weird things you did that day, laugh, tell stupid jokes & giggle, watch a silly show, and fall asleep together.

In three short years Aaron I have grown more than I have ever grown with another human being to a place where I feel like we have been married for decades.  And yet, we are just starting what can only be an incredible adventure together.

Aaron, if you are reading this – I love you, I can’t wait to be your wife in just over a week, and take on the world together!

Wedding Bells & Wheelchairs

My fiancé and I have finally set a date for our wedding — Saturday, May 18!  We got engaged back in August of 2017 and simply cannot wait to be married to one other.

I had envisioned getting married in a bikini with a giant barbecue on the beach and having a big soirée with family and friends while we frolicked about in the water.  Clearly, I’ve had to adjust my expectations as I’m not quite sure a bikini would be very flattering these days in a wheelchair nor would getting stuck in the sand with my wheels 😉

I’ve been thinking critically over the last several months on what I want to do for my special day.  I came to the conclusion that I want my fiancé.  Plain and simple.  I just want to be married to this man who loves me dearly, and I him!  Frankly, I wouldn’t say I don’t care about the wedding, but I’ve never been the type of girl to throw a giant wedding with all the bells and whistles.  Honestly, I rather save up all that money spent on a wedding for a wonderful honeymoon and adventures traveling with my main squeeze.

Read the rest on Push living Magazine: https://pushliving.com/wedding-bells-wheelchairs/?mc_cid=984e329e09&mc_eid=ab8a053cfc

 

LOVE in a “DISABLED” World

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Last week I was on one of my spinal cord injury Facebook groups and I was reading a post where a gentleman was commenting on how he was in love, but he just felt so incredibly lucky that someone could love him with everything that comes along with dealing with spinal cord injury.

The endless comments that followed really resonated with me as folks told him stories about how they had been married for decades whether both the couples were injured themselves or whether they were with an able-bodied person.

This post really struck a chord as it got me thinking about the concept of love and what we as human beings can look past in order find the beauty within another individual.

Read the rest on Push Living Magazine: https://pushliving.com/love-in-a-disabled-world/?fbclid=IwAR1r3Cw3DfWrFQlRaP_GWIJ5JYiw-twhvBNUCWr8WIjCagasvJ8aEl-ZNK4

 

LESSONS LEARNED FROM MY “LIFE BREAK” IN MIAMI

For the past two years I’ve taken several weeks a year to head down to Miami from my home in Raleigh, North Carolina for a “Life Break.”  I used to live in Miami for about 12 years and am fortunate enough to have a place to stay when I go down there.  I was feeling overwhelmed and lost in life, so spending several weeks in the sunshine was a very welcome break indeed.  I just returned from Miami several days ago with something more valuable than a few weeks of fun in the sun so to speak.

I went down to Miami with the intention of spending time with my fiancé swimming, getting together with some of my great friends, frolicking about on different adventures, reading, and just relaxing.  However, what I returned to Raleigh with was something much more powerful than just recharging my batteries.

I’ve been trying to figure out for some time why I have not quite felt at home in Raleigh since I moved here three years ago.  I have met some wonderful people who I get to see on the weekends with my fiancé, but I am lacking something extremely essential in my life.  Community.  I usually go about my day waking up, exercising, working, and dealing with whatever caregiver headaches pop up my way as I just can’t seem to keep a steady one. The best part of my day is when my honey comes home to me at the end of the day.  On the weekends we usually pop around town a bit to meet up with some friends if they are around, but my happy place is truly in the water or near the water.

I’ve always underestimated the concept of community until recently.  My whole life I’ve kind of been a loner you could say popping around the world, moving from home to home, and while I have good friends around the world I’ve never really stayed put anywhere long enough to build a real sense of community except for in Miami.  I’m not sure if it is being paralyzed or the fact that I am in my mid-30s, but I want to build a life in an environment that makes me happy with people around me who have known me for a very long time.  I’m not going to have children, so Aaron and I need to find where we fit in this world to build a strong community of people around us.  I don’t think Raleigh fits the bill in the long run for me particularly because as I get older the nerve pain I suffer from gets very severe during the cold winter months.  So, I am pondering the idea of moving back down to Miami in the next few years. Continue reading

An Engagement to Remember

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… I was staring at a blank page while thinking how to write the perfect article on how I got engaged this past weekend. My mind kept wandering back to when I was first injured in 2010 laying in my ICU bed with tubes coming out of every orifice of my body, a neck brace immobilizing my head, and copious amounts of morphine coursing through my veins.

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 …

… 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 fiancé 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 …

Read the rest on Push Living Magazine: https://pushliving.com/an-engagement-to-remember/

 

 

 

Wheelchair Air Travel – “Quad” Style

 

…If only air travel for a complete C6 quadriplegic paralyzed from the chest down were so easy!  Since my accident nearly 8 years ago I have flown a handful of times.  Most of my flying expeditions consisted of me moving across the world to China back in 2013, which involved flying an aircraft for over 15 hours at a time.  Back then flying seemed incredibly daunting, but I always had a village of the family to help me along the way.  I had never flown with just one other person before…

… I read many reviews on different airlines and I decided upon Delta Airlines.  I was looking at prices and I knew I wanted to fly economy because if I wanted to travel in the future saving money for business class would take away from money I could spend on adventures to wherever we would be flying to.  However, I decided to take baby steps.  I sprung for an extra $100-$200 and upgraded to Delta Comfort.  Delta Comfort Class is essentially Economy Plus.  This gives you a few extra inches of legroom, which I thought for our first mission would be appropriate considering that I needed the extra room for my knees because I am so tall. …

Read the rest on Push Living Magazine:

https://pushliving.com/wheelchair-air-travel-quad-style/

Cruise Ship Adventures & Wheelchairs – Lessons Learned

Several months ago my boyfriend and I were set to celebrate our two-year anniversary of being together. We wanted to take our first solo vacation somewhere tropical and most importantly we wanted to do it alone. Needless-to-say I was quite nervous at the prospect of having my partner take care of me with respect to all aspects of caregiving, and travel. He is such a phenomenal individual in that he has always been interested in making sure that he could take care of me by helping me dressed, showering me, taking care of my bathroom needs, and, most importantly, ferociously loving me! It took us quite a while to get to the point where I was comfortable showing a man those intimate details of my care, and all of the “not so sexy stuff” that comes along with dating a woman in a wheelchair.  The point is we finally got there over the last several years, so I thought it only natural to take the next step to see if we could really take our relationship to the next level, and travel alone together.

After countless hours of exploring our options, I decided that a cruise was probably our best bet. It was cost-efficient, I could take as many bags as I needed on the ship, and I could easily take both my wheelchairs. I live in Raleigh, North Carolina, so I knew I could drive 9 to 12 hours down to Florida in my van with all of my gear. One thing the two of us love to do is swim together, sit by the ocean, and go on adventures. I thought starting out with a seven day vacation down to the Western Caribbean would give us enough time to enjoy ourselves, but not too long in case things went sideways.

I posted a detailed account of our journey day by day on my personal blog if you are interested in every step of our journey. For the purposes of this article, I want to summarize some of the pros and cons of cruising as a handicap passenger.

Read the rest on Push Living Magazine: https://pushliving.com/cruise-ship-adventures-wheelchairs/

 

 

Long-Term Relationship Physical & Emotional Intimacy with Spinal Cord Injury

Who knew that my first serious long-term adult relationship would be after my spinal cord injury? I certainly did not! I was always the type of girl to have 1 foot in a relationship and 1 foot out in my 20’s. When I would break up with the guy I would usually move cities or countries. Truth be told after my accident I figured I had my shot at relationships and I would likely be single the rest of my life, which I was surprisingly okay with for many years. When I first started dating in a wheelchair I had an array of gentleman callers in order to explore my sexuality years after my accident. I’ve written about my dating adventures in multiple blogs, but I’ve never really touched on the subject of how my current boyfriend and I have grown to fall deeply, and madly in love.

It was not until this past year that I really started to understand what emotional intimacy meant and how one really has to work at it keep a relationship alive. In my opinion, emotional intimacy is the glue which holds a long-term relationship together. Even if you have a super strong connection initially, the more time you spend with someone and the better you get to know them, the deeper your connection can become — and emotional intimacy in a long-term relationship is so much different than emotional intimacy in a brand-new relationship.

In new relationships we can reflectively listen, spend quality time with our partner without distraction, and make thoughtful gestures to build closeness.

At the time I didn’t realize what this meant, but approaching relationships from a slightly different angle with spinal cord injury has made me appreciate what this means. When I first started dating my boyfriend I spent the first year actively keeping him out of every aspect of my spinal cord injured life with respect to caregiving. I wanted to take the time to get to know him as a person, and, more importantly, I truly believed that keeping the “paralyzed” part of our relationship was the best way for us to grow. Looking back, I am happy with the results, but I probably could’ve shared all of me sooner as opposed to just part of me. Continue reading

ROYAL CARIBBEAN CRUISE ADVENTURE (Part 2)

Continuing on with our Royal Caribbean Cruise Adventures …

We spent the first night, Sunday night, on the ship a little later than we planned dancing the night away. On Monday morning we docked in Key West, Florida for our first day’s adventure.

DAY 2 – Key West, Florida

We docked right in the center of the city of the island of Key West. For those of you not familiar with Key West, it is the coolest little funky island, and is the farthest South Island on the chain of the Florida Keys. It takes about 3 ½ hours to drive there on one road from Miami, Florida. It is filled with eclectic bars, unique restaurants with their own personalities, 1 million little shops with fabulous trinkets, and a group of folks who are so unbelievably laid-back. Most of the locals on Key West are the kind of people you just want to hang out with with the beer by the water, and hear their life adventures.

“The Port of Key West”

I’ve been to Key West many times before as I previously lived in Miami for about 10 years. On one of my adventures down to Key West with one of my great friends from college we ventured down to the island for something called Fantasy Fest. Fantasy Fest is kind of like a Mardi Gras down in the keys. Thousands of folks drive down, dress up in the most wonderfully outrageous costumes, walk the streets, and party the night away. When I was 21 we headed down to Key West, but we forgot to book a hotel. So, we took my sisters truck and decided we would find a parking lot, and sleep in the back cab.

I was unbelievably surprised at the copious amounts of folks strolling around in giant penis costumes, body paint, and a ridiculous amount of other fun filled costumes. Of course we got ourselves into all kinds of devious trouble, met cute boys, partied the night away, and by 3 AM in the morning we ventured back to a church parking lot where we paid $70 to park our car for the night. When we woke up in the morning we were sleeping in the back of the pickup truck with our little feet hanging out the back side. We woke up to some strange folks tickling our feet… I’m not kidding. It was disturbing and hilarious all at the same time.

Anyway, I had the opportunity to take my power chair off the ship as Key West is relatively accessible. There is this one fabulous restaurant I’d remembered from years prior called Blue Heaven that was wildly eclectic with the best pancakes I’ve ever eaten, and a laid-back atmosphere that made you want to just sit in a hammock with the Corona, and drink the day away. Unfortunately, we only had a few hours to dive into Key West, so I had to make a strict itinerary so we could see a few things before we headed back to the ship. We met one of Aaron’s long-term family friends who had retired in Key West for lunch at Blue Heaven. We laughed, drank, ate delicious food, and then strolled around the little eclectic streets of Key West for hours. Key West doesn’t have many hotels, but rather these old colonial Bed & Breakfasts, which are just precious historical gems I would recommend if you head down that way. Now, they are not particularly handicap accessible, but if you’ve a strong man who can carry you up the stairs … Go for it!

“This sign display had been up for the last 15 years… I had been dying to take a picture and pay someone to watch them shower for a while ;-)”

 

We ended the afternoon at a Tiki hut bar, my absolute favorite, right on the ocean with some reggae music watching the boats sail by, and enjoying the 80° weather while sipping on some lovely alcoholic beverages.

As the day ended we boarded our ship and we were met by our fabulous concierge, Ligia. Continue reading

ROYAL CARIBBEAN CRUISE ADVENTURE (PART 1)

Sorry for the hiatus in my blog writing over the last several weeks, but, as many of you know, I was off on an international adventure with my boyfriend on a Royal Caribbean seven-day cruise to the Western Caribbean. My boyfriend and I have been together for about two years now and we wanted to do something exciting with just the two of us to see how we would be able to handle 10 days alone with no help.

I did a copious amount of research on accessible vacations and I decided on taking a cruise as I read so much about how cruise ships are accessible. We decided on a seven-day cruise leaving out of the Port of Tampa, Florida going to Key West, then to Cozumel, Mexico, then to Belize, and then to Costa Maya, Mexico. I have so many stories so I will split this adventure up into several blogs, so you don’t have to read a novel all at once!

Needless-to-say I was pretty nervous at the prospect of going alone with one person on a vacation who would be responsible for all of my care. I wanted to plan a trip where I could stay in one location and take mini adventures from day-to-day. I’m going to save my conclusions of my overall experience after I dive into all of the exciting, challenging, and fun excursions we embarked on for the last blog.

I prepared for this trip for weeks. I created a document with an extensive packing list for everything I might need in case I got stuck in a foreign country for whatever reason. Considering I’m mildly neurotic about making sure I don’t forget anything, I think I packed the kitchen sink, and then some. As the old saying goes “I rather have it and not need it, then need it and not have it!” Most of my suitcases were dedicated to medical supplies and just a few items to clothing. I also decided to bring a big egg crate because I have the most sensitive skin in the world, and I was unsure of the mattress surfaces on the ship beds.  I also brought along my manual chair for excursions in foreign countries as I was fairly confident a power wheelchair would not get me far in countries where ADA compliance is not quite as strict.

Our cruise was set to depart on Sunday, April 15 from Tampa, Florida. We decided to leave on that Friday and drive 9 ½ hours from Raleigh to Tampa in order to have a day exploring downtown Tampa, and meeting up with a longtime friend whom I had not seen in about four years. I’m sure I could’ve flown down to Tampa had it not been for not with the ridiculous amount of gear we were carrying with us. The drive went pretty smoothly and we checked into a hotel in downtown Tampa. Before meeting up with a friend for the afternoon to go play, drink, and frolic about we first needed to give me a shower, and wash my hair before heading onto the ship. This was quite an endeavor because at home I usually do a type of bed bath and then stick my head in the sink to wash my hair. This was clearly not an option, and while we did get a roll in shower I did not bring a shower chair with me because I just couldn’t fit anymore gear into the car.

In the typical roll-in showers in hotels they usually have a small pulldown shower seat, which is quite dangerous, but it is all we had to work with at the time. Aaron put many towels on the shower seat for padding, picked me up like a princess, and strategically sat me down on the shower bench while I held on for dear life. He got in the shower with me while I wrapped my arms around his body as he washed my hair and body. It was dangerously comical, but we made it work. I definitely don’t suggest this method unless you have a very strong man who can lift you up and make sure you don’t fall flat on the floor 🙂 We were testing out this shower method as the ship had a similar set up for a roll-in shower, and I needed to make sure we were capable of getting me semi-clean every few days on the ship.

When we headed to downtown Tampa to meet up with one of my great friends Jill. We absolutely fell in love with the town. We went to a famous area called Ybor city that has a Cuban influence where we watched cigars being rolled, smoked cigars, bounced around from one cool Cuban spot to another, and reminisced the night away with Jill. We decided that Tampa was worth a trip in and of itself one day as there are so many little gems the city has to offer in addition to the entire West Coast of Florida. I spent over 12 years in Miami, but somehow never managed to get out West.

On Sunday morning we packed up our gear at 5 AM in the morning in order to arrive down to the port of Tampa to board our Royal Caribbean ship, Rhapsody of Seas. Continue reading