Taking a Life Time-Out

Hi Folks,

I will be taking a time-out from life over the next month and I will be back in November.  I am headed down to Miami for a little bit of rest and relaxation.  I’m sure I will have many adventures ahead of me, which I will share with you all upon my return.

2018 has thus far been a wild and busy year for me and I just need a little bit of personal time for reflection, relaxation, meditation, and to assess next steps in my life.  Look forward to sharing my endeavors with you when I returned back in the next month 🙂

I’ll be updating my Facebook page with some of my adventures!

Stay Tuned …

 

 

 

 

 

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”

I have been so fortunate to have my mother and my fiancé help me over the last few weeks on a regular basis every few hours to help me cough and get through the sheer misery of bronchitis.  As many of you know who have suffered from upper respiratory infections, whether you are paralyzed or not, bronchitis is a beast because it can take weeks to clear itself up – if not months.  I opted for a natural route of garlic nebulizers, inhalers, natural remedies, but eventually I had to suck it up and take antibiotics, which I’m not a big fan of.  Slowly, but surely I recovered and life is slowly returning to normal.

What I found really interesting about the past month is how I almost forgot what life was like with constant medical problems.  For almost 6 ½ straight years I was in and out of hospitals, surgeries, and was dealing with some sort of challenging medical predicament.  However, over the last 2 years I’ve pretty much been the pinnacle of “paralyzed health” as I say 🙂 I try and remind myself every day to be humble and realize that anything can happen at any moment in life, but especially with spinal cord injury.  I am always grateful when I wake up healthy, but I was very much surprised to find myself starting to subconsciously take for granted the new normal I had become accustomed to over the last 2 years of being healthy on a regular basis.  It’s an interesting psychological phenomena how the brain can so quickly forget or rather repress traumatic experiences for survival!

I must say last month I felt helpless all over again as if I had just broken my neck 8 years ago.  I couldn’t believe the rush of emotions that were overcoming my psyche on a daily basis.  I felt as though so much of the mental progress I had made over the last several years to find an equilibrium of happiness had just flown out the door as I was coughing, crying, and cursing at the world for weeks on end.  I just couldn’t stop thinking how unfair it was to be paralyzed.  Seriously!  I’m not sure if I was in shock when I first broke my neck, but I never went through any kind of grieving or depression after my accident.  I was a girl on the go working towards recovery and survival, which did not leave much room for mental healing.

“Yes, yes… Being fed a delicious salad by a loving mother in the pool… Definitely a spoiled moment :-)”

Years after my accident I had regressed to a point where I just didn’t want to go on anymore because I had completely skipped over the phase of grieving for the fact that I had broken my neck those many years ago.  I worked very hard at trying to deal with my feelings and eventually I thought I had healed.    For the most part I wake up pretty happy every day, appreciate that my circumstances could be way worse, and really don’t complain about much of anything.  Many compliment me on my positive attitude, my perseverance, my determination, etc.  While I appreciate so many of these compliments more than words could do justice, this past month I realized something quite profound with the help of my therapist.  By the way, I think everybody in the world should have a therapist. … We all need help in some way on a regular basis 🙂

REALIZATION

As I was being tended to day and night over the past month I started to develop a slight feeling of anger.  I am completely physically dependent, especially in times of medical issues, on others.  I always say please and thank you a thousand times, tell those helping me how much I appreciate it, profusely show my gratitude to everyone in my life, etc.  I couldn’t figure out why I was and am still to an extent having these feelings of anger, sadness, and helplessness after eight years of the accident.

I even find myself creating self-sabotaging behaviors in my life, work, etc., and I just could not figure out why.  It’s something that’s been on my mind for a while, but I usually just push down the feelings, push through my day with a smile on my face, and go about my business.

I was recently at a therapy session and explained to my therapist how I felt.  For the past year I have even put on a brave face for my own therapist, which is so contradictory because they are the ones that you are supposed to be completely open about your feelings to.  I finally broke down and told her how I was feeling, and she looked at me with a heartened glance.  It’s as if I was having an “Ah-Ha” moment in my life all these years later.

I have read so many psychology books for work, my personal life, life, etc.  I love the study of psychology as I am intimately familiar that we generally use about 5% of our conscious mind on a regular basis, leaving 95% of our subconscious mind to create all kinds of menacing unconscious thoughts, feelings, etc.  Basically, we have two brains – an analytical one and an emotional one.  This is no surprise, no breakthrough, and I’ve always been acutely aware of these facts.  However, this is precisely my problem with so many things in life.  I like to work with facts of life. I acknowledge that emotions are important, but I have always tried to keep them at bay for a multitude of reasons in order to live a mentally balanced life.  It’s almost as if, for the first time in my life, I acknowledged, what many in psychology call the “Shadow Self.”

THE SHADOW SELF

For those of you unfamiliar with this concept… A brief Wikipedia excerpt:

“In Jungian psychology, the “shadow“, “Id“, or “shadow aspect/archetype” may refer to (1) an unconscious aspect of the personality which the conscious ego does not identify in itself, or (2) the entirety of the unconscious, i.e., everything of which a person is not fully conscious. In short, the shadow is the “dark side”.

Because one tends to reject or remain ignorant of the least desirable aspects of one’s personality, the shadow is largely negative. There are, however, positive aspects that may also remain hidden in one’s shadow (especially in people with low self-esteem, anxieties, and false beliefs).”

I’ve always been aware of my shadow self, which I really thought I was in tune with, but I was trying to have my conscious mind control my unconscious one.  This is such a silly concept now that I think about it because it’s like a lion tamer thinking that they can actually tame a lion, when in reality the lion can come up and tear you to shreds any time it chooses.  If you feed it just enough it won’t attack you, but if you keep ignoring it and not feeding it – no matter how experienced you are at taming a wild beast – it will attack you none-the-less.

“I just want to nibble my little niece up every moment of the day!”

I sobbed to my therapist that I couldn’t understand why I was having feelings of anger in life or towards some people that were trying to help me or why was I sabotaging myself and some of my work endeavors when I 90% felt happy in life.  I am so grateful for everything I have.  She explained to me that there is an unconscious part inside me like a little child, very common in psychology, which had been repressed, and pushed down for so many years that she was trying to be heard in any way possible.  Often times, many folks give the unconscious part of their psyche a name.  I named my Panther just yesterday.

My therapist then explained to me that Panther never gets to come out to tell anyone how she feels.  I was really fighting my therapist on this because I could not understand why Panther should be upset when she has everything she needs in life?  Again, my therapist pointed out that I may have everything “I” need in my life, but she certainly does not.  She never had the chance to grieve over the accident, she always has to put a smile on for those helping her no matter what otherwise the fear of people leaving her when she needs help terrifies her to death, she never gets to cry, I am always telling her to be quiet and shut up, and she is constantly being bullied by me.

We went into a role-play scenario next where I was going through a self-talk exercise when I mess something up with work or I don’t do something as perfectly as I would like, etc.  At first I thought it was kind of silly, but the way in which I spoke to myself when I don’t do something up to my standards is completely appalling.  I was telling myself how much of a failure I am, I’m not going to be successful in this or that, I should never complain about anything because I am so lucky, I am worthless, etc.  I would honestly never talk to my worst enemy in this way, yet I was talking to myself like this on a regular basis?  “What the hell” I thought to myself!

My therapist was telling me that I am literally repressing an internal part of myself on a regular basis and she is starting to fight back after all these years.  She wants to be heard and her subtle ways of trying to come out as I try to rope her down is to sabotage me and my feelings, emotions, and personal behaviors.  No one else in the world can see it … In fact, most people think I am the type of person who has everything completely together.  Truthfully, I feel like I am too, but clearly I am ignoring a very large part of my unconscious being who is just not standing for it anymore!

” Sisterly Love”

My therapist told me that it is okay to still grieve for the fact that I broke my neck, to be angry, to have bad days, and most importantly to vocalize it to myself.  I honestly thought at this point nobody wants to hear about the way I am feeling because breaking my neck is pretty much old news in my book, but clearly an internal part of me still grieves for the fact that I can’t do anything alone, I need help all the time, and it’s like she’s angry at me for taking that damn dive, and ruining her life!  Again, I must reiterate the “conscious” part of me does not feel this way, but apparently the “subconscious” part of me still does even though I am not in tune with her yet.

What I find incredibly fascinating is that I’ve always been aware of this concept in psychology, but clearly I was not making a connection in my personal life.  Sure I may have had the first part of my breakthrough with my therapist recently, but the work has barely begun.  I now have to start listening to “Panther.”  I have to pay attention to what she’s trying to tell me, when she is angry, when she is sad, and literally just sit with those feelings.  I hesitantly told my therapist that I did not want to listen to her because she’s constantly trying to sabotage me, so why would I want to be friends with her?  She told me that I don’t have to adopt her behaviors, but that we have to find a way to live together.

Honestly, I have no idea what this actually means.  I have been having overwhelming emotions recently by just listening to her, which makes me terribly uncomfortable because I am a smiley happy person, and this exercise completely drains me.  I’m not quite sure how I will create a new mental roadmap for myself in the future, but the journey has definitely begun.  This blog goes out to Panther 😉

“No words… Priceless”

CONCLUSION

I started out with developing a simple, yet annoying, case of bronchitis and have ended up with a realization that life is this constant struggle, and mostly a struggle with yourself!  I wish I could say I felt better, but I know the hard work is just about to begin.  However, every fiber of my being just wants to experience happiness, but you cannot have the Ying without the Yang!  After reading this blog and thinking critically about your own subconscious being … What is he/she telling you?  What are you repressing on a regular baasis to just survive?  What is your childlike version of yourself screaming about?  A lot of interesting points to ponder in your own life 🙂

Let the self-exploration and discovery begin!

An Engagement to Remember

… I was staring at a blank page while thinking how to write the perfect article on how I got engaged this past weekend. My mind kept wandering back to when I was first injured in 2010 laying in my ICU bed with tubes coming out of every orifice of my body, a neck brace immobilizing my head, and copious amounts of morphine coursing through my veins.

I distinctly remember several people huddled around me, thinking I was mostly unconscious, commenting on how devastated they felt that I would no longer be able to live a full life and likely not get married or find love. I know it was not meant to be hurtful as they were just intensely concerned for how my life would turn out, but I recall thinking at that exact moment the romantic part of my life was finished …

… The point of complete comfort, love, intimacy, and trust came for me when he saw everything I physically had to deal with on a daily basis. I always joke, but up until I met my fiancé I would never go out in public or let a man see me without mascara and eyeliner on … Seriously! One day I decided to not wear any makeup and he told me how utterly beautiful I looked, and that he actually preferred me without makeup. It was at that moment I knew I had a keeper; okay maybe there are a few other things that made me know he was a keeper, but that was definitely a big one for me …

Read the rest on Push Living Magazine: https://pushliving.com/an-engagement-to-remember/

 

 

 

Wheelchair Air Travel – “Quad” Style

 

…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

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. 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

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