An Engagement to Remember

by Before the Accident, Family, Lessons Learned, Misc, Sex + Dating, Spinal Cord Injury •

… 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

by Funnies, Lessons Learned, Medical, Sex + Dating, Spinal Cord Injury, Uncategorized •

 

…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/

Life’s Sacrifices & Choices with Spinal Cord Injury

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by Before the Accident, Family, Lessons Learned, Medical, Spinal Cord Injury, Uncategorized •

 

 

 

When we are growing up we are faced with all kinds of choices a consequences and as children that we are blissfully unaware of.  Do we want a cookie or a doughnut?  If we finish our vegetables then we get dessert; if we go to bed early than mommy will read us a bedtime story, etc.  At a young age we don’t really associate making a choice with sacrificing one thing for another either.  It’s only as we develop into young adults that many of us come to the realization that everything in life is a choice, sacrifice, or compromise.

Choices and compromises become exceedingly more complicated as we grow into adults.  If we want a family, then we have to save to have a baby; we can’t go on that family vacation because we are trying to save money to buy a house; if we keep eating donuts every day then we run the risk of becoming obese; the list goes on.

I was thinking about sacrifices and choices the other day as it relates to spinal cord injury, and more specifically, the compromises I have had to make and continue to make as a C6 quadriplegic.  As I was pondering some of these choices lately I was surprised at how many things I have had and will have to give up in my life.  I was having a challenging day, so of course this was a glass half empty point of view, but after waking up the next morning feeling more like myself I made a list of the things that I have gained, and given up over the last 8 years since my accident in 2010.

Living with spinal cord injury presents such a unique set of challenges that many folks, unless you are the one injured or know someone who is, may not think of on a daily basis.  I often play this game with myself because while I know that I am faced with seemingly insurmountable challenges at times, there is always someone who is dealing with A LOT more than I am.  This is not to say that we should go around comparing ourselves to other people, but I do find pausing on certain days to take stock of what you have in your life is a quality many of us lack.  This age-old saying may seem outdated and redundant, but I personally find that it rings true when the proverbial “ship hits the fan” in people’s lives … “You don’t know what you have, until you’ve lost it.”

Here are a few of my choices over the years: Continue reading →

Cruise Ship Adventures & Wheelchairs – Lessons Learned

by Funnies, Lessons Learned, Misc, Sex + Dating, Spinal Cord Injury •

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

by Funnies, Lessons Learned, Medical, Misc, Sex + Dating, Spinal Cord Injury, Uncategorized •

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 →

Caregiver Neglect and Abuse – The Legal Side – My Recent Story

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by Family, Lessons Learned, Medical, Misc, Spinal Cord Injury, Uncategorized •

Over the years I have spoken with dozens and dozens of fellow quadriplegics who seem to share in the story of having their caregivers leave without notice, emotionally abuse them, physically abuse them, and so many other horrifying tales. If you know me or have read some of my blog posts you will know that I, too, have had more than my fair share of horrifying incidents with caregivers. This blog is not to recount what has happened to me, but rather shed some light on interesting facts I have discovered over the last month due to a recent caregiver leaving me with no notice, no phone call, no text, etc. I have learned some useful tidbits of information and also picked up on some tips & tricks for the hiring of future caregivers, which I hope will help some.

Six weeks ago I was on the hunt for a new live-in caregiver several days a week and after interviewing several my entire household agreed they liked this one particular lady. I don’t use caregiving agencies because they are too expensive and cannot cover the hours I generally need, so I usually look to care.com and Craigslist as so many other quads in my situation do as well.

I think my caregiver radar is broken, so I like to have other people’s opinions to help me choose my caregivers these days. She did really well, was pleasant, a fast learner, and told me repeatedly how much she loved working with me. I was thrilled as I thought perhaps, this time, just maybe we would find one who would stick around for a while.

Anyway, things were going swimmingly, in my opinion, and two weeks ago after one month of employment she simply did not show up the night she was supposed to come into work. She left all of her belongings at my house and we were all completely dumbfounded. I called her multiple times, texted her, but to no avail. Naturally, my first thought was that she was in some sort of accident and was in the hospital. I was worried. Normally, when caregivers leave they take their stuff (secretly I might add) and just don’t come back. When this happens I usually just let it go because I am in such a rush to find someone new that I don’t have time or energy to follow up.

This time seemed different. Continue reading →

ASSISTED SUICIDE

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by Lessons Learned, Medical, Misc, Spinal Cord Injury, Uncategorized •

First … A happy picture to make you smile before diving into the heavy stuff!


Assisted Suicide – No doubt a highly controversial topic in our society today, especially if one is religious! I am going to approach this topic from my personal perspective. I realize this blog may spark some intense feelings just like religion, sex or politics may, but I think it is a topic that needs to be addressed from an ethical, moral, personal, and societal standpoint. I am going to leave the religious argument out of this blog for the time being as I am not personally religious, but spiritual in some sort of sense.

I would be remiss not to start out by talking a little bit about my feelings regarding death as a whole. Before my accident I was terrified of death whether that be because I was in my young 20’s, was super healthy, did not live in pain, etc. The only certain thing in life is that we are all going to die, but in my younger years I just could not bring myself to think about it.

After my accident I was actually killed by several medical professionals and brought back to life as so many other spinal cord injury patients can relate to. Over the course of the last 8 years or so I have not only become comfortable with the idea of death, but actually find a strange comfort in it. This is not meant to sound like a doom and gloom statement, but it gives me peace. In my particular situation and the myriad of medical nightmares I have endured both physically and mentally over the years I have personally been in situations where I wanted to die. Continue reading →

ROYAL CARIBBEAN CRUISE ADVENTURE (Part 3)

by Funnies, Lessons Learned, Misc, Spinal Cord Injury, Uncategorized •

Continuing on with our Royal Caribbean Cruise Adventures …

Day 5 – Belize Mayan Ruins

5 AM on Thursday … As the alarm clock started ringing Aaron and I groggily looked over on each other debating whether we should go explore some Mayan ruins in Belize or take the day to sleep. Cruises can be exhausting if you are always on the hop with different shore excursions. However, you must keep in mind that this was my first real vacation in 8 years without any of my family or caregivers. So, while we might’ve squeezed a few too many adventures into our 7 days, Aaron popped out of bed and made quick work of getting me ready to go explore thousands of years of history!

We arrived in Belize City early that morning, but were anchored offshore. We were anchored at what is called a tendered port. Essentially, you have to take small little dinghies seating anywhere between 50 to 80 people from the cruise ship over to the port of Belize. These little tendered ports are not for the faint of heart, especially in a wheelchair, because with the rocking ocean and trying to lift my manual chair onto this little boat presented its own unique set of challenges. Fortunately, the weather was quite calm so we were able to physically leave the ship, but there are days when they will not allow a wheelchair to maneuver onto the small vessels.

Ligia, our concierge attendant on Royal Caribbean, escorted us to the tendered boat as we skipped all the lines 🙂 I was decked out in sneakers, sports cloths, my manual chair, and ready to get bounced around! It took us about 30 minutes of rocking around on this boat, but we made it to the dock. I’d been to Belize nearly 10 years ago and from what I had recalled, which turned out to be exactly correct, Belize City is no joke from a dangerous perspective. It is not a city you want to go roaming around in alone as a tourist … and certainly not with an expensive wheelchair! It has a very high crime rate, poor infrastructure due to a hurricane hitting the city years prior, and not a very friendly crowd. When we arrived at the docks there was a small little area for tourists and tour guides to meet up with one another, make haste of getting into a van, and getting the heck out of the city!

Since I hired a private accessible tour company who partners with local tour companies who claim to be handicap accessible, and who would be able to show us the Belize Zoo in addition to some Mayan Ruins – I was pretty excited! We did have quite a bit of bother trying to find our tour guide due to many miscommunications, but we did eventually find him.  We were running behind schedule though. I wasn’t quite sure how far away our excursions were, but we literally had to be back to the boat in five hours.

Our tour guide, Ricky from Roam Belize Tour Company, greeted us with a smile and proceeded to show us the way to our “accessible” handicap van. Well, there was a van, and there was a ramp that you had to take out of the van to attach to the rear of the vehicle to push me up. I would say it was accessible, but not particularly accessible friendly if you know what I mean 🙂 Once I was loaded into the back of the van I was looking for straps to lock in my wheelchair. Ricky informed us that there were no straps as they were a tour company that was just getting up and running with providing accessible tours to folks in wheelchairs. The way the van seats were laid out, unless I was a paraplegic and could transfer my own, was not going to work to transfer me onto an actual van seat because Aaron could not lift me up with a height of the van.

I did call the company to confirm and I filled out many forms saying that I was paralyzed from the chest down, and that needed to stay in my wheelchair, but being a foreign country things get lost in translation sometimes. No big deal we thought!

Continue reading →

ROYAL CARIBBEAN CRUISE ADVENTURE (Part 2)

by Funnies, Lessons Learned, Misc, Sex + Dating, Spinal Cord Injury, Uncategorized •

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)

by Lessons Learned, Misc, Sex + Dating, Spinal Cord Injury, Uncategorized •

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 →