LESSONS LEARNED FROM MY “LIFE BREAK” IN MIAMI

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.

In Miami I have people I have known since before the accident and after who are always offer to help me, be there for me, go on adventures with me, etc.  Also, I have a great friend down to Miami, Sabrina, who runs the Sabrina Cohen Foundation.  When I was first injured eight years ago she came into my ICU room and basically taught me that there is life after spinal cord injury, and helped me along the way.  She has created this phenomenal adaptive beach program and is working on building an adaptive recreation center for handicapped folks for swimming, yoga, health and nutrition, etc.  This is such an incredible undertaking and there is nothing like it in the country that would allow handicapped folks to have access to the beach year-round as well as other services provided to live a more accessible life.  I am so passionate about this because the happiest place in the world for me is being in the water.  Working on a project like this would give me some real purpose on the ground and get me out of the house more to 🙂 when I’m in the water I feel free, I don’t have the weight of the wheelchair, my pain levels dissipate, and my mental state changes to one of being completely free.  It’s kind of hard to describe, but other than being surrounded by my loved ones it is the second most wonderful feeling I have in the world.

When I was down in Miami I felt like I had a sense of purpose, which I lack here in Raleigh.  I think Raleigh is a gorgeous place because my sister lives here and I would come back to visit all the time, but if you have the ability – I think it is important to listen to your heart.  Being paralyzed many of us are always constantly fighting adversity from a physical and mental standpoint, and if there is anything that can bring just a little bit more happiness to our lives I say go for it!

ADVENTURES

Now, onto the lighter side of life for a moment.  Aaron and I spent three wonderful weeks in Miami really living it up as we knew when we returned to Raleigh we would be coming home to temperatures around 40 or 50° as opposed to Miami sunny 80° weather in October.

We spent 1/3 of our time swimming in the pool, sunbathing on floating mats, cracking open coconuts to drink the fresh coconut water, taking an overnight trip to go check out Key Largo, visiting alligators, catching up with good friends, taking sunset boat rides on the Miami River, etc.  I could go into all the details, but I think pictures are worth a thousand words!

Key Largo

Aaron and I drove an hour and ½ down to Key Largo to explore what the northern Florida Keys had to offer.  We sipped piña colada’s, fed the fish, explored hidden dive bars, and had some very silly adventures.  On the way back we even stopped at this exotic fresh fruit and vegetable stand started by a guy named Robert in the 1970’s and then took a spontaneous adventure to go check out an alligator farm.  I must admit in all my 12 years of living in Miami I had never taken the time to go see the alligators despite how touristy it might have been 😉 Next year I think we might head down to Key West for a few days and explore the keys as I used to do in my 20’s.

Friends

We went out to countless meals with some incredible friends I met before and after the accident… These people are what make this city so special for me!

Shake-a-Leg

Shake-a-Leg is a nonprofit organization here in Miami that makes boats, sailboats, kayaking, and so many other water sports available to handicapped folks.  I used to live across the street from it in 2010 before I moved to China in 2013 after my injury, and I must say I am in love with everything they offer.  It allows me to get on the water in so many different ways.

We were fortunate enough to have a great captain, Craig, who took Aaron, my friend Johnny, and my mom out to go see Stiltsville, which are a small collection of houses built in shallow water off the coast of Miami in the 1920’s.  90% of these houses were wiped out in the 1926 hurricane, but a few still stand!  There are absolutely breathtaking and privately owned.  We went fishing, cruising, and had a picnic on a boat prepared by my fantastic mother.  To feel the wind in my hair and bouncing around the ocean is a truly indescribable feeling.

We spent another night with Capt. Craig and one of my great friends, Deborah Davis, who runs Push Living Magazine, for a sunset cruise down the Miami River.  We pulled right up to the restaurant on the water and the staff were phenomenal as they brought dinner to us right on the boat!  This may have been one of my favorite nights in Miami other than swimming!  We ate incredible seafood, drank wine, smoked cigars, and let life’s worries melt away for a few hours.

Wynwood Art district

When I was living in Miami there was a new hip and upcoming area called Wynwood.  I would call it kind of grungy, but very chic and artsy.  Apparently this area is blowing up, but they have a space where many artists have the ability to put their art on these giant walls, create these giant statues, and it is free to the public.  I wouldn’t say it is particularly my scene, but definitely an interesting day for sure 🙂

Mini-Adventures

I spent much of my misspent youth prancing around in South Beach, Miami, Coconut Grove, etc.  I took Aaron or to several of my favorite spots for lunch, dinner, exploration, etc.  The food… Oh the food, there really is nothing like it!  There may be an overabundance of octopus pictures because I’m totally and utterly obsessed with this food 🙂

SWIMMING

Of course this was one of my favorite aspects of the trip.  I think we spent 9 of our 21 days swimming in the pool, cracking open coconuts, drinking wine, reading to one another, and lounging about like lizards.  I just can never seem to soak up enough sun and get tan enough 😉

Thank you to friends and family, and Miami for making our vacation so memorable!

 

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”

Continue reading

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