“THE RIGHT CIRCUMSTANCES”

Aaron and I just got back from our honeymoon the other week where we drove several hours from Raleigh, North Carolina to Asheville, North Carolina. I had been wanting to see Asheville for the past 15 years and Aaron had attended University in that neck of the woods. People fly all over the world to visit this lush and scenic city, and I can’t believe I had lived in Raleigh for the last several years and not made a trip over there. We decided to forgo an international honeymoon to save on plane tickets in order to have a five-star honeymoon in Asheville.

We embarked on so many adventures, stayed in extravagant resort hotels, explored several of the hundreds of breweries, went on a waterfall adventure, partook in some hand glassblowing, joined in on the Friday night drum circles in the heart of downtown Ashville, and so much more. At the end of this blog you’ll see a myriad of fun photos from our adventures.

While we were having a lazy morning in bed one day a topic of conversation arose with respect to all of the circumstances in life that had to play out accordingly in order for us to be where we are today. There are folks in life where the puzzle pieces just seem to fall where they may and life works out smoothly. For most of us, this is not really the case. We have to work hard, throw in some blood sweat and tears, push through challenging hardships, and go through our personal journeys in order to achieve where we are in life today.

This is no exception for the two of us. I cannot speak for Aaron, but as for myself, there are so many factors being paralyzed I had to overcome to have that lazy morning with my husband on the most romantic honeymoon.

Fast forwarding through all of my medical challenges for the first six years of my injury and speaking directly to my dating life in a wheelchair, things were hard and I’m not quite sure I would’ve been able to overcome them without the emotional and financial support of my immediate inner circle of family and friends.

You see, when I first started my dating adventures I was facing a surgery for a pressure sore on my bum that was, best case scenario going to leave me in bed for the next six months, and worst-case scenario another two years. I felt as though I didn’t have any time to waste, which is why I went on my “dating spree,” as so many of you know. What I don’t usually divulge is the Herculean effort it took to even date, not only in a wheelchair from a confidence perspective, but the physical logistics of making it happen.

Dating is hard enough without having to wear your disability on the outside because, let’s face it, not everyone is equipped to handle what comes along with dating a person in a wheelchair. Many of us wear our disability on the inside and much of that does not come out until months or years after dating a person, which, often times ends in a divorce or the end of a relationship. I don’t get to wear my disability on the inside and while it’s a beautiful fantasy to think a person should love you for you, I don’t personally believe that’s the reality when you begin dating anybody.

When you first start dating someone there has to be a physical attraction there. If there’s an attraction then two people usually go through a honeymoon phase of their relationship involving eating, drinking, lots of sex, exploring each other’s character, etc. With respect to a physical disability one has to add on multiple layers of complexity to a new relationship. If you divulge too much you might scare off your partner, and if you don’t show them enough; down the road you may run into issues when they realize they may have gotten themselves in over their head. It’s a very tricky balance. I’m sure many of my other wheelchair friends can attest to this. Of course there are exceptions, but I’m talking about a majority of us.

For me personally, I wanted to make sure that Aaron and I had the ability to explore each other sexually, intellectually, and not have too much of the caregiving aspect of my life intrude upon our relationship. However, I believe I was in a unique situation where I was able to do this, but so many folks are not.

Let me explain. I had the resources to have live-in caregivers and have a beyond overly supportive mom who helped me along the way. When I would invite a gentleman caller up to my bedroom I would, with the help of my caregivers and mom, be laid out in beautiful lingerie with my catheter taped my leg so as not to intimidate them with a bag flailing about on my leg, I would be out of my wheelchair so the guys wouldn’t have to see the “not so pretty” process I go through with getting in bed, taking off my pants, my catheter, my socks, etc.

I was afforded the opportunity to allow a man to get to know me first and slowly introduce them to the ins and outs of the “ugly,” for lack of a better word, of spinal cord injury. I am a naturally curious and outgoing person, and most people who meet me are always seemingly amazed at how confident and determined I am. What they don’t realize is I spent five years completely shut in from the idea of romance, overweight, had no self-confidence in my appearance anymore as I used to get any guy wanted before the accident, and I’ve given up on even trying. I’m not quite sure what changed five years later to push me to say “screw it!”

Over time, and I mean very slowly over time, I introduced him to the catheter, the bowel program, dressing me, etc. Honestly, he didn’t think it was a big deal because he learned to love me for me and realized that it was just part of my life he was going to have to deal with if he wanted to be with me. I was mortified and embarrassed because I didn’t want a man that I was intimate with help me go to the bathroom, roll me in bed, make sure I didn’t have pressure sores on my butt, etc. As I’ve written about before, our romance transformed over time, but a lot of things at the fall in the place before this could happen.

I brought this point up to Aaron and he agreed that he felt very comfortable in the beginning because he had the opportunity to understand my mind and that my body was just something we had to deal with later on. However, the conversation “got real” when I asked him what he thought it might be like if I had to introduce him to all of my care early on. He very honestly admitted he didn’t know. I mean none of us can really know the past, but we realistically talked about how it might have been too much for him if I had not had the caregivers and my mom to “hide” the full extent of my care from him. I was not trying to deceive him, but we are all human and physical disabilities are the exception compared to the billions of able-bodied people in the world.

Most folks who start a new relationship don’t have to deal with what folks in wheelchairs have to. That’s just a fact. If Aaron and I would have been dating and I did not have the help for my care and he would’ve told me it was too much for him, I honestly would’ve understood. I would not have faulted him. I dated a few men before him who told me the wheelchair was just too much for them. I don’t think that makes a person a bad human being, but it just makes you realize that it takes an extra bit of character in a person to date another in a wheelchair.

I know that sounds horrible, but in my opinion, it’s the truth. There are some men and women who don’t want to date people who are 600 pounds, too tall, too skinny, etc. Different strokes for different folks as they say. However, it’s called discrimination if you say these candid things out loud, but you can’t judge who a person is attracted to and how they feel about certain situations. It’s just a fact of life.

If you are different in any way shape or form compared to the societal norm, things are naturally going to be more challenging for you. This is not to say you can’t overcome any challenge in your way or that anything is impossible, but you do have to work harder and put more effort into achieving what you want. Of course this is unfair. Life’s not fair. Life has never been fair for thousands of years, but somehow we muddle through as human beings and overcome the obstacles presented in front of us regardless of our situations. There will always be the “complainers” in life who prefer to just voice their frustrations as human beings rather than take action. That’s okay too, but I doubt they’ll find joy in much of their life.

I have friends in wheelchairs who I help with dating and many of them are often discouraged when the first guy or second guy they go on a date with tell them it’s just too much for them, and they can’t handle the wheelchair. It doesn’t make that person a bad person, just not the right one.

I honestly can’t imagine if I did not have the help in the beginning of our dating career where I would be today. It was certainly a hard conversation for me to have knowing that the man I now call my husband might’ve thought everything I go through too much to deal with if he had to take it all on in the beginning. However, it’s a reality I’ve had to deal with. I love the idea that Aaron would’ve loved me for me right off the bat, but that may not have been the case. Fortunately, I didn’t have to find out 🙂

This blog is not meant to deter anyone who has any kind of disability or upward struggle in life away from dating or anything else they are trying in life, but I merely want to point out that whatever your struggle is you might have to work harder than your neighbor, your friend, or family member to get what you want. We live in a modern-day society in the United States that is supposed to be based on equality, and while I think it is important for each and every one of us to fight for this, it’s also important to realize that life is usually not equal for people whether that be your race, gender, disability, body type, etc. Knowing this, those of us who are “different” in any way are likely going to have to be more determined than the rest to get what we want.

For example, last winter there was a lady that parked in the white stripes of the handicap spot and I waited outside in the freezing cold for over an hour with Aaron until the police came to write her a ticket. Being in a wheelchair those white stripe lines are very important for us so our ramp can come down, and we can get out of our cars safely. However, if I was not disabled I probably wouldn’t have had to stand out in the cold and freeze my butt off to make a point. This is just a small example of having to take that extra step when your situation in life is fraught with more obstacles than most.

I do find those who have had to struggle more than others in life to also be extremely grateful for all the small things that many of us take for granted. One of the happiest places in the world for me is swimming. When I post pictures on Facebook of me swimming many always comment how amazing it is that I am in the water. However, what most folks don’t realize is that it takes quite a great deal of effort to get my suit on, put me in my wheelchair, carry me in the water, get me out of the water, shower me, wash my hair etc., which can take several hours after swimming alone. Swimming usually takes up my entire day.

It doesn’t matter to me though because when I am there that simple feeling of the weightlessness of the water is one I never forget even when I lay in bed at night time. It’s also important to note that if I didn’t have a support system of a fabulous mother, great husband, awesome sister, and caregivers … I probably would not be able to swim regularly.

I’d be remiss not to mention that I fought for months in my early years of my accident to learn how to swim with a fabulous swim instructor. I nearly drowned several times, cried, and resented those who could just walk into the pool and take a casual swim, but I didn’t give up. I kept at it and eventually I learned how to swim. Swimming, for most, is a seamless act of throwing on a suit and walking into the water, but for me, even with what it takes to get me in the water, is a place of pure ecstasy and happiness 🙂

Life is all about perspective. We all have our own perceptions of reality, which cause our own internal struggles on a daily basis, but I think it’s pertinent to take a moment here and there to figure out in an unforgiving world what brings us moments of joy.

Now, onto some of the fun honeymoon photos!
Grove Park Inn

This gorgeous mountain like Château in the mountains of Asheville where we wined and dined, splashed around in these underground spa pools, and enjoyed the magnificent scenery.


Downtown Asheville

We participated in Friday night drum circles, explored the coolest breweries with private tours, poked around in booksztores, had a private glassblowing session, pranced around rooftop bars, and poked around the coolest and artsy city I’ve been to in a long time


Biltmore Estates

This estate built in the 1800s… A tourist attraction for sure. However, we found quiet little nooks to explore. Also, a very cool winery with underground tunnels we got to explore.


Waterfall Adventure

I spent hours researching handicap accessible waterfalls and found a great website, so I thought, that said I could roll behind the waterfall. What the gentleman who created this website neglected to inform us of was that there were hundreds of winding steps to get down 🙂 We met a lovely (strong) pastor and his son, and with Aaron, they carried me down the entire way! There are some great humans left in the world!

BEHIND THE SCENES: From the ICU to the Walking Down the Aisle

 

They say it takes a village to raise a well-rounded child. While this may not be the case in the modern times we live in, in the past, an entire community would watch out for a child while their parents went out to work to provide for their children.

I think similar parallels can be drawn today when a person has a traumatic injury, disease, or disability. If you are on your own with no support or help when you break your neck, for example, life can be infinitely more challenging with an extremely bleak outlook for life without the support of family, friends or community.

I can personally attest that I would not be where I am today without a Herculean effort from my family and closest friends. This article is dedicated to more people than I will be able to thank personally in helping me survive the ICU in the early days 9 years ago to walking down the aisle just a few weeks ago.

Read the rest on PUSH LIVING MAGAZINE:

https://pushliving.com/behind-the-scenes-from-the-icu-to-t…/

 

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. Continue reading

Home Exercise Program for people with Spinal Cord Injury (SCI)

Since I was 13 years old exercise, working out, and sports have always been a centerpiece in my life.  Whether I was having a bad day, stressed out, simply wanted to stay in shape to fit in a bikini or just generally tried to be healthy I was always able to exercise.

When I was exercising I would enter this Zen like state where I was in my own space and no one else could bother me.  After my accident I simply didn’t know how I was going to continue to exercise as a C6 quadriplegic, paralyzed from the chest down with some arm movement, and no hand function.

THE CHALLENGE I WAS PRESENTED WITH WAS:

  1. How could I create a workout routine at home that would require minimal help from caregivers other than helping to set me up?
  2. What kind of equipment could I use that was not outrageously expensive so I could share it with fellow quadriplegics?
  3. How could I create a program that was sustainable in the long run just like going to the gym or working out to a DVD at home when you’re able-bodied?

Over the years I’ve perfected my own exercise routine based on my needs and what I can physically do.  Many of the suggestions and equipment I mention below apply to all spinal cord injury folks, but more specifically to quadriplegics who have limited use of their hands and arms.  Exercise is even more important for those of us who have very limited mobility, but it is possible, doable, and I can prove it

Read the rest on Push Living Magazine:  https://pushliving.com/spinal-cord-injury-exercise-program/

“BEING HAPPY vs. BEING HAPPY ENOUGH”

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I was lying awake last night battling my arch nemesis “Ms. Insomnia” and she engaged me in a fight of a lifetime.  I couldn’t move, but my mind was running through a jungle fighting for my life as she tried to attack every fiber of my positivity.  She ran me up a tree at an alarmingly pace and as I clung to the tree branches for dear life, and tried not to let her get the best of me, she managed to claw me back down to the ground.  While I was being mauled by this insidious monster I laid there completely paralyzed unable to move as she had had her way with me.  By the time she had had her fill she left me battled and bruised.  As I was lying on my back gasping to breathe I decided to give in and just sit with my swirling thoughts.

I was trapped in my bed wide awake, angry, and frustrated that she had gotten the best of me as she so often does.  Many folks with spinal cord injury share the same fate night after night as I do whether that be from stress, anxiety, intense nerve pain, involuntary muscle spasms, etc.  I couldn’t help but think about the concept of happiness in life as I laid awake for two hours struggling to desperately get myself back to sleep.

I kept pondering what is this idea of happiness anyway?  I feel like it’s always wanting more, which makes me lose perspective and mentally spiral out of control on a regular basis.  This idea of happiness coupled with creating hopes, goals, and dreams — when not fulfilled — can end up leading to endless suffering for many folks from all walks of life.

The question I kept asking myself is “Am I happy?”  Continue reading

“Dear Cat Island, My Home – A Story of a Broken Heart & Forgiveness”

“Fernandez Bay Village (Home) – Half the homes are part of a resort and half the homes are private homes”

 

Several years ago I reached a point where I finally made the best peace one could make with breaking my neck and having my life change forever.  I spent so much time constantly pushing forward and not thinking about my accident through sheer determination of will.  This worked for a time, but eventually I had to find a way to dig deep in order to find some resemblance of happiness in my life and search for the best way I knew how to live a full life despite my circumstances.

Through quite a fair bit of soul-searching I arrived to where I am presently living the most fulfilled life I know how with work, finding love, getting married, spending time with friends & family, and traveling when able.

For the last six months Cat Island, Bahamas (my home) has been on my mind.  My family has had a home in the Bahamas for the last 40 or so years and it is a place so magical words simply cannot do it justice.  It is a beautiful out Island in the Eastern Bahamas spanning 60 miles long and 2 miles wide with a population of roughly 2,000 people.

The airport runway to the island is so short that no large commercial airlines are able land on the runway giving it its unique, and rustic charm because only those who know about it know how to get there.

I grew up on this island and made my first trip down when I was only several months’ old back in 1983.  I have lived in so many countries around the world that Cat Island has always been my home base, my center, my world, my escape, and my favorite place in the entire world.

I spent my time on the island with family and friends spearfishing, scuba diving, exploring caves in the middle of the island, taking Robinson Caruso style boat trips with my family to unnamed deserted islands, jumping off rocks into the ocean, picnicking on deserted beaches, kayaking through crystal clear lagoon waters, taking long walks on the beach, building bonfires with family, and countless other surreal adventures. Continue reading

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

 

HOW EXPENSIVE IS IT TO BE PARALYZED ANYWAY?

 

Talk about a loaded question!  By the time you’re done reading this article you will likely understand why I choose not to go get manicures or pedicures, spend money on wild vacations, go shopping often, and have tremendous respect for all fellow disabled folks trying to make it from day-to-day.

As if breaking your neck were not insult enough having to deal with being paralyzed from the chest down, having bowel and bladder issues, pressure sores, respiratory infections, caregivers full-time, etc.; the financial burdens associated with any type of disability really can be more debilitating than the disability itself!

When one is newly injured there are pretty much two ways you can go with respect to finances. 

The first is if a family does not have the financial resources to support the endless costs of being paralyzed.  If this is the case then you have to rely on government support ranging from Social Security Disability to Medicaid/Medicare, and various other government assistance programs.

The second option for newly injured patients is if they do have the financial resources to support themselves whether that be comfortably or just barely able to get by.  Fortunately, I have a family that has been able to help support me and provide what I needed while I was getting back on my feet and working, but not without having to budget everything down to the dollar on a daily basis.

Read the rest on Push Living Magazine: https://pushliving.com/how-expensive-is-it-to-be-paralyzed/

 

A Change in Life Perspective – My Personal Metamorphosis

 

First off, Happy New Year to you! 

 

Coming into the New Year I thought it only fitting to discuss the concept of perspective.  I was asked by a fellow reader if I could touch upon the topic of how my mental perspective has changed over the last eight years since breaking my neck as opposed to just how my physical life has changed with being paralyzed.  I will start off by saying my life perspective has changed drastically and I can’t be entirely sure if this is due to my accident or the fact that I’m also getting older.  I suspect it is probably a little bit of both.

In general a change in perspective in life is quite gradual in my opinion, takes many years, and is usually preceded by many hardships along the way, which affect one’s opinions on many topics.  When I broke my neck my world got turned upside down, which violently shifted my perspective on a lot of things in life very quickly, but more from a physical standpoint.  I was so engulfed in trying to figure out how to live a life with a body 80% paralyzed that I didn’t have the presence of mind to think about how my mental health was going to change.

For the most part my perspective change has been for the positive, but there have definitely been some dark changes that I would be amiss not to dive into as well in light of always being open with my writing, and my life even though I run the risk of exposing myself further 😉

The old saying “we only have one life to live,” no matter how cliché it may be, means more to me now than it did prior to my accident merely due to the fact that I suffered a life altering event.  I see so many folks who live simple (and I don’t mean that in a bad way), but happy lives, and go about their business not realizing how easily life can change on a dime.  While it is easy to say that we will change our lives when something drastic happens – it is a lot easier said than done to take actionable steps each day to change.  However, these small steps are not only key, but they can take very long time to see the effects of as they require determination, and will over a long period of time. Continue reading

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