ROMANCE RE-DEFINED

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

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

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

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

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

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

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

For Example –  

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

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

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

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

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

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

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

This is the definition of sexy, too! 

A Funny Romance Story

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

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

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

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

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

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

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

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

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/

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/

 

The “Off Limit” Social Topic

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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

INTERNAL HURRICANES

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(Before I get started on this heavy blog… I will preface by saying I’m posting photos that are not even a little bit related to what I will be writing about below. However, these photos represent moments of pure Happiness in my life! … And, let’s face it, we all need to keep that happy place in the forefront of our minds at all times.)

Over the course of the past month I’ve pretty much been on a hiatus from life, work, writing, posting blogs, going out, and enjoying life.  For the first time in my spinal cord injury career I developed a severe case of Bronchitis.  As I’ve previously mentioned time and time again being physically paralyzed can pale in comparison to the secondary complications we face with spinal cord injury.  For example, pressure sores, respiratory infections, sepsis, urinary tract infections, etc. are just a few of the major culprits that can take many of us out for the count for weeks, and months on end.

Generally folks with spinal cord injury suffer from just a few secondary complications on a regular basis.  I have always been Princess and the Pee when it comes to severe skin issues with pressure sores and osteoporosis.  Knock on wood I have not suffered from many infections, respiratory issues, urinary tract infections, etc.  However, this past month I was surrounded by a myriad of sick individuals in my household, which finally did me in.  I started with a small cold that developed into bronchitis.

I have many spinal cord injury friends who suffer from upper respiratory infections all the time and I could always sympathize with what they were going through, but I could not empathize because I did not know what it felt like.  I do now!  The challenge with spinal cord injury, especially when you are a quadriplegic with paralyzed abdominal muscles and use your diaphragm to breathe, is that coughing, breathing, blowing your nose, etc. are tremendously challenging.  You don’t have the core strength to bring up all of that nasty phlegm that gets stuck inside your lungs.

So, when you’re stuck with mountains of dark green phlegm in your lungs you literally have to have someone push on your stomach, lean forward, and hack up what feels like all of your internal organs coming out at the same time.  It’s quite a process and extremely exhausting to cough to get the phlegm up & out.  There are, of course, machines that can help with this, but they can come at a pretty hefty price.

“Being an Aunt is the Best”

Continue reading

Wheelchair Air Travel – “Quad” Style

 

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

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

Read the rest on Push Living Magazine:

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

Life’s Sacrifices & Choices with Spinal Cord Injury

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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

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

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

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

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

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

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

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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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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