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.

You see when we first started dating I wanted to make sure that he didn’t feel overwhelmed by my spinal cord injury and everything that came with it. Honestly, when I think of spinal cord injury I get overwhelmed and I am the one who is injured! There are so many things to look out for on a daily basis with respect to bowel issues, bladder care, dressing, pressure sores, infections, etc. The list is endless and when I started becoming truly intimate with another person I wanted them to really get to know me as a person, and not just the injury. This is pretty silly because a big part of me is my injury, and while it is not my personality, dealing with it ins and outs of daily life with respect to my care cannot be ignored.

Regardless, I chose to keep half of me locked away for the better part of the year in order to let our sexual relationship flourish in addition to just having fun. I spent so many years in misery with a myriad of medical nightmares that I just wanted to leave that part of me locked away for a time.  My boyfriend was beyond understanding and while I think he wanted to get to know all of me more quickly I was quite reserved with respect to my care. Ultimately, I think I made the right choice, but I was convinced that I would be able to spend the rest of my life with a man, and not have him involved with my care. I was so wrong on so many levels.

The longer two people spend together, the longer they have to explore each other’s inner worlds. With time we can become highly attuned with one another be able to understand our partner’s motivations instead of misinterpreting their actions. Communication can become clear and hopefully with time we feel safer to share vulnerable parts of ourselves.

About a year into our relationship my boyfriend gently communicated to me that he needed more. He wanted to know all of me and I realized that the time had come to share what I consider the most terrifying part of a relationship – combining intimacy and care giving.

It took many months, but I slowly taught him how I got dressed, how I showered, how I washed my hair, how I went to the bathroom, how I changed my catheter, etc. I truly believed that that showing another man these aspects of my life would diminish our sexual relationship on many levels. Again, I was wrong in magnanimous ways. Not only did he handle all aspects of my spinal cord injury care with such tenderness, but we actually grew closer together. I’m not quite sure how this happened, but perhaps it is because I decided to let another person truly into my life other than my family.

While we learned to better communicate with one another we still have moments when we want to kill each other. However, it is in those moments if you still feel that you want to spend your life with someone even when they drive you bananas you have truly found something special!

Not only did we build a stronger relationship based on trust, communication, and compromise, but we are now able to finally take trips on our own without the help of family or caregivers. This propelled our relationship to new heights, and, for the first time in my life, this helped me understand what emotional intimacy really meant. Sexual intimacy has always been very easy for me as I never really placed much weight on sex itself. Sex has always been just an act for me, but emotional commitment seemed incredibly daunting throughout my life. I didn’t realize until recently that I had never really trusted another man before my current boyfriend.  When you learn to trust someone you start to see love through a different prism. With respect to spinal cord injury, he has been the only other person in my life, other than my immediate family, who I trust 100% with making sure that I do not get injured and I am cared for. It’s hard to say, but I would probably trade walking again in my life in order to have what I have now.

“Adventures in Mexico together!”

OUR RELATIONSHIP TECHNIQUES

  1. Physical Intimacy

In my humble opinion I think the defining line between friendship and a relationship is physical intimacy. Whether you define physical intimacy as sex, oral sex, snuggling, kissing, etc. is up to you, but there needs to be some sort of connection that you do not feel with other people. The physical connection in whatever form it takes causes the brain to release oxytocin to feel good, which through neurotransmitters impacts emotional responses and promotes relaxation, trust, and psychological stability. Emotional and physical intimacy may not be one and the same, but there’s a lot of overlap between the two – and couples with a strong sense of shared physical intimacy, in my opinion, are likely to also be attuned to each other emotionally.

How do we keep up our physical intimacy in order to promote our emotional intimacy?

My boyfriend and I share an extremely strong physical connection with one another. With that said, over time, and anyone who is or has been in a long-term relationship can tell you, the physical act of sex has a tendency of dwindling as the years roll on. I think this is perfectly natural, but in order not to lose the emotional intimacy you feel towards one another the physical intimacy needs to be tended to, just like a garden.

I love spontaneous unplanned sex just like the next person, and while we still make this happen on a semi-regular basis, but as you get older & life gets in the way this is not always particularly feasible. So, just as you have to make a plan every week to keep going to the gym to stay in shape – you also have to plan for sex.

PLANNED SEX NIGHTS

This may not seem very sexy and lacks complete spontaneity, but planning certain nights for sex, in my opinion, still can be very sexy & arousing. We plan to have sex at least 3 times a week at minimum, and more if we have time. We are both super busy as many of us are when we get older, but taking a few hours a week to really focus on one another is an absolute essential part of our relationship. Sex, for us, is not just about the physical act, but rather a time to giggle, laugh, act like children, roll around naked, and be extremely present with just the two of us.

With my spinal cord injury planned sex nights are not very challenging for me because I have to plan most of my day on a regular basis. With respect to sex itself I have to rely on my man to have the energy and strength to throw me around 😉 Once you get in the mood this never seems to be a problem – I think for anybody!

What about when two people are just exhausted on a regular basis?

Many of us come home from work, the gym, life, etc. and are just flat out exhausted. We just want to be left alone, watch a TV show, read, etc. or just zone out. While this may be a great coping strategy for yourself, I don’t think it is a great strategy for the long-term health of a relationship. I think you really need to make a plan for sex or intimate time together for the sake of your relationship.

Specifically with spinal cord injury, I am usually in bed pretty early during the week after a long workday, exercise program, and other things I have to tend to. Sometimes it makes things challenging because I want to be up in my chair when my baby comes home from work around 6:30 at night, but the nerve pain in my body is usually higher than I would like, so I have to make allowances. The biggest factor in my life is the ramping up nerve pain at the end of the day. This does not necessarily put me in the mood to have sex and conversely my love is also exhausted from his long days. So, as mechanical as this may sound I think two people have to sometimes “force” themselves to have that intimate time together. I cannot think of many people that would say once they are aroused they are too tired to keep going, but it is the act of putting each other in an aroused mood that can take much effort just as saying “No” to donuts when you are trying to watch your weight.

Some years ago, an Australian sex therapist and dating coach, Bettina Arndt, controversially wrote that women (I also think men) who felt low sexual desire in the relationships should “just do it.” What she meant was this – even if women (or men) felt low libido, having sex anyway might encourage feelings of desire and sexual responsiveness. Despite the controversy, her idea had finally been supported by a scientific study, which basically found the same thing to be true in 2015. The study was published in Social Psychology and Personality Science, and it showed that when the partner who feels low sexual desire indulges in their partner’s sexual needs regardless, they strengthen the relationship.

Sex doesn’t always have to be desired to have the desired effect of intimacy. I couldn’t agree more!

So, regardless of your circumstance – if you are having a dry spell in your sexual relationship … Take a page out of Nike’s playbook and “Just Do It!”

  1. Alone Time

In my particular situation it can be challenging to find alone time with my man being a C6 quadriplegic paralyzed from the chest down and always having caregivers, and my mom constantly around. So, we have to actively work at finding time to spend together. When he gets home from work at 6:30 PM or so every night we usually close the door and have “us” time until we go to bed a few hours later. This is a time where we can catch up on our day, read to each other, watch a show together, have sex, giggle together, etc.

Do not get me wrong – there are some nights when he comes home and we’re both just truly exhausted, and we just lie next to one another so we can “zone” out. While we may not be entirely present and speaking to each other we are still physically in the same room lying next to one other. When he comes home from work I’m always in bed during the week nights to relax from the pain I feel, so if he wants to hang out with me he has to come to bed! I realize that many couples can go to different rooms and do their own things, but in one regard spinal cord injury brings us closer on weeknights!

  1. Date Nights

I am sure if we had children this point would not be as applicable, but since we don’t, we make sure that every Saturday afternoon we go out to do something fun whether that is meeting up with friends or having a private date night together. I always make sure to look up random and spontaneous adventures within the city that will create fond memories, we can laugh about in months or years to come.

This may sound easy, but sometimes I really have to search for random events around the city. When I cannot find something we literally go to different parts of town to speak with random strangers. Since we both work so hard during the weekdays I like to make sure we get out on the weekends, and experience something weird and unusual. You never know who you are going to meet, what connections you’re going to make or what fun/trouble you might run into. Even if you have to plan spontaneity … I know an oxymoron … I find it a critical part of making sure we have random adventures to laugh about in the future together.

  1. A Final Few

There are so many things that we do to keep our relationship alive, but one that I absolutely love is when we are stressed out or having a really bad day we always call one another to say how much we appreciate the other in our life. When you get caught up in the stresses of life it can be easy to take out your frustrations on the people that love you most. I find it crucial to make sure to tell the people I love how appreciated they are on a weekly, and usually daily basis. I believe at the end of our lives we’re not going to look back on how hard we worked, but on the relationships we formed with other people. I want to remember how intensely I loved, not how many hours I put into a workday!

We also have an extremely funny habit of making very random animal noises to one another. Yes, I know it sounds childish, but it keeps the playfulness alive in our relationship! Sometimes I think we sound like a bunch of kitties “meowing” to each other. I’m sure my boyfriend will love that I just disclosed that 😉

CONCLUSION

While I’m a constant work in progress (as we all are) I am humbled to finally understand what emotional intimacy means and what it feels like. It is a rare gift to find another partner who you truly want to spend your life with, but it is not without work. Just because you find love doesn’t mean you’re going to keep it if you don’t put in the time and effort just as you do toward your career, exercise program, diet, etc.

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

2

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

3

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)

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)

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

Moving Mountains Paralyzed: An Insurance Battle to Remember!

When I think of Moving Mountains Paralyzed Insurance Companies the analogy of a Goat herder comes to mind. The Goatherder will watch out for its flock as long as it produces enough fur for the season for the goat herder to line his financial pockets. The moment the goat gets out of line or stops growing fur, the herder will slaughter the goat, and eat it for dinner.

Similarly to insurance companies … As long as you pay your premium and don’t step out of line an insurance company will offer you basic protection. However, if you start creating a commotion, appealing everything, and asking for more — insurance companies will find some way to slap you with financial bills that seem unimaginable.
Since my accident 7 ½ years ago I’ve been a goat that has been slaughtered by insurance companies and I have also been a goat that has managed to break free. Navigating the waters of insurance companies to get what you need, especially when you are paralyzed, requires voracious tenacity, extreme dedication, a lot of hard work, patience, and knowledge of how to work within grey areas.

Read the rest on Push living magazine at:

https://pushliving.com/moving-mountains-paralyzed-quirky-quad-guide-winning-w-insurance/

SEX & MEDITATION

3

I will preface this blog by saying for family and friends who do not want to know too much about my intimate sexual life you may want to skip the second half of this blog 😉

However, considering my blog is about Sex, sass and Spinal Cord Injury Adventures … I would be remiss not stay true to topic!

A majority of folks who sustain a spinal cord injury suffer from extreme chronic pain in many forms after their accident. Before I broke my neck I would look at somebody in a wheelchair and wonder what they felt? … I thought they couldn’t feel their legs or their stomach, etc. Boy was I wrong on so many accounts!

Many of us suffer from something called Neuropathic Pain. Essentially, it is nerve pain that manifests itself in different ways throughout the body 24/7. It’s almost like a cruel joke to be paralyzed and feel pain from the inside out. Regardless, this pain can result in feelings of pins and needles, burning fire, glass cutting you from the inside out, etc. It is different for every person.

Regardless, this chronic pain never goes away and can affect our daily lives with respect to productivity, quality of life, focus, and so much more. I find being paralyzed quite easy at this point in my SCI career, but you never quite get used to the chronic pain.

Personally, I suffer from 4 serious chronic pains at the same time, which can completely throw me off my game on certain days.

  1. Neuropathic Pain from the chest down and in my arms – feels like burning pins and needles day and night
  2. Hypersensitivity on my hands and forearms – feels like little shards of glass cutting me at all times
  3. Neck Pain – from multiple surgeries I have scar tissue damage that prevents me from sitting up in my chair too long, and feels like someone is slowly cutting me with a butter knife on the back of my neck
  4. Shoulder Pain – I suppose due to overuse it is a combination of nerve damage, musculoskeletal damage, myofascial pain, and soft tissue damage

Since my accident 7 ½ years ago I have always been on the mission to reduce my pain as opposed to finding a cure with respect to stem cell therapy for walking. I have tried so many techniques, of which two I find to be the most successful. However, the pain is always with me no matter what I do – although pain is just a signal from the brain, so I am convinced that if I keep trying I will be able to reduce it greatly on a permanent level one day!

I have tried:

  1. Opioids – definitely not recommended as opioids just make you drown out life and they don’t actually work on the right receptors in the brain for nerve pain
  2. Acupuncture
  3. Electrical Stimulation Acupuncture
  4. Neural Muscular Massage
  5. Meditation/Hypnosis
  6. Physical Therapy
  7. Lithium Protocol – this one nearly killed me as it can be very dangerous
  8. Sex
  9. Distraction
  10. Cold Laser Therapy

I’m sure there are few more I am forgetting, but I’m constantly trying to find new ways to reduce pain. The two most successful methods I’ve found in my life are Meditation/Hypnosis and Sex. I will dive into these two a little bit further.

 

MEDITATION / HYPNOSIS

Considering pain is just a signal from the brain hypnosis and meditation can be very effective, but only if you practice regularly, and are disciplined in your efforts.

I worked with a hypnosis instructor who helped me for over a year creating guided visualizations for me to listen to at 30 minute increments. Meditation is more challenging for me because when I sit quietly all of the feelings of pain are in the forefront of my mind. With hypnosis I find with gentle music in the background and guided instructions I use my mind to enter a world I created to reduce pain. It is kind of like a special room where enter through a red door and inside that room is a beautiful lake and ocean with clouds, beaches, and floaty toys.  I’ve taught myself to look down at my body and leave my pain floating above. I know it sounds peculiar, but with years of practice it really helps reduce the pain on the days where the pain just seems unbearable.

Admittedly, I should practice every day, which I don’t do religiously anymore, but it is one of my 2018 resolutions to continue to rigorously get back into it.

I go into a dark closet, tilt my chair back, and listen to the recording. The burning feeling of pins and needles changes to a cool and relaxing feeling. It is hard to describe unless you practice this on your own, and it may be hard to believe that this actually works.

In the beginning I could barely sit still for five minutes, but that’s how you have to start. Try meditation or hypnosis for one minute, then work up to two, then three, etc. There are so many recordings online that you can download for free, and you have to find a voice that is soothing to you, which can relax you.

 

SEXUAL INTERCOURSE

The second most effective technique for reducing my pain, if you can believe it, is
SEX.  Sex is a natural pain reliever — Sex causes increased production of oxytocin, which is often referred to as the “love hormone.” Before orgasm, oxytocin, released from the brain, surges and is accompanied by the release of endorphins, our natural pain-killing hormones.

When you are paralyzed from the chest down the feeling of sex is quite different than what used to be … It is not “Normal” in the sense of the way things feel. While I cannot orgasm in the traditional sense I still have my own type of feeling from sexual intercourse. Continue reading

“SCI” SUPER MOM’S – An Endangered Species!

1

 

A little over 10 years ago BBC produced a television mini-series called “Planet Earth.” They spent five years filming unique exotic environments, plants, and animals all over the world. There was one episode where the film crew spent months in subzero Himalayan temperatures trying to film the endangered snow leopard. After many failed attempts they finally caught the snow leopard on camera for the first time. These leopards are so unique and not many exist, that we know of, in the world today.

An “SCI” (Spinal Cord Injury) Mom is an endangered species of human being, like that of the snow leopard, that are far and few between throughout the world. In general, the bond between a mother and child is so unique and unbreakable. When a child has a severe injury, such as breaking their neck, a mom goes into protection mode in order to provide the safest, best, and happiest environment for their child. However, not all moms are cut out to be SCI moms.

An SCI mom goes above and beyond, dedicates her life to her child, puts their needs above their own life, and puts up with more heartache than perhaps even the child going through the injury themselves. Generally a child starts fleeing the nest in their 20’s, starts their own life, and the parents move on to other adventures in their life because while their job is never done, the daily nitty-gritty caring aspect for their child is complete. With a spinal cord injury the reverse happens.

   

A dedicated and loving family member puts their life on hold once again to care for their injured child as if they were a baby, but it never ends. Continue reading