ROMANCE RE-DEFINED

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

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

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

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

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

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

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

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

For Example –  

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

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

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

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

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

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

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

This is the definition of sexy, too! 

A Funny Romance Story –

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

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

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

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

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

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

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

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

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

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

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

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”

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

“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

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

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?

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

 

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

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

 

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

 

The “Off Limit” Social Topic

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

The other week I was watching my fiancé wake up in the morning to get ready for a trip he was preparing to embark on.  As I watched him bright and early in the morning I thought how seamlessly he could get ready as compared to myself.  When he felt the need to go to the bathroom, he simply went; when he wanted to brush his teeth he just grabbed a toothbrush and started brushing; when he was ready to put his clothes on he picked up both his legs, put them in his pants, and zipped up his fly.  These may seem like trivial things, but I was watching in complete amazement because these are things that I need help with on a daily basis, and will continue to need help with for the rest of my life.

There is a topic, however, whether you are paralyzed or not, that is just kind of taboo to talk about in society.  Bowel and Bladder.  Going to the bathroom is such a natural function that we all go through every single day and many of us do not give it a second thought.  When you feel the need to pee you sit down on the toilet and go.  When you have to poop you sit down on the toilet, push, nature takes its course, and you’re done.  These are not things you generally want to think about as many couples who have been married for decades still close the door when they go to the bathroom.  I, on the other hand, need help with these functions all day long.

You see, when one sustains a spinal cord injury the nerves that control how you go to the bathroom are wrapped around the coccyx area of the spinal cord.  This means that no matter what level of spinal cord injury you sustain whether you are a quadriplegic or paraplegic, your bathroom functions will be impaired — No matter what!  However, there are some folks with spinal cord injury who do have some control, but if you are a quadriplegic like myself, it is likely that you have pretty minimal control of going to the bathroom on your own, feeling when you need to go to the bathroom, or are able to do it by yourself.

What does this actually mean? Continue reading →

LESSONS LEARNED FROM MY “LIFE BREAK” IN MIAMI

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

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

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

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

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