INSPIRATION WHERE YOU CAN’T SEE IT – FINDING YOUR LEPRECHAUN

The other day I was reading an article on how traveling on airlines are far from “accessibly” friendly to those in wheelchairs. In this article the story started out by featuring a wheelchair user in his mid-twenties named, and you may know him, Shane Burcaw.

If you have not heard of Shane before he suffers from muscular dystrophy and has been in a wheelchair since he was a child. Due to multiple contortions of his body he has to fly in a very intentional manner. His only weighs about 65 lbs., so he has to take a child’s car seat on the plane with him. He then experimented with multiple iterations of high-quality foam, which he spent nearly $8,000 on, to fit on the left and right of him in order to avoid pressure points. He actually did a video with his now fiancé on how he does this.

He’s marvelously funny and very articulate. He started a blog nearly a decade ago and is now a public speaker as well as having a very successful YouTube channel with his fiancé where they talk about relationships, and daily dating life. I highly recommend you check it out, but that’s not the point of this story.

The article sparked me to think about ‘inspirational” disabled people and those wonderful stories you read about those overcoming the greatest of odds in the face of the most adverse situations. Where do we hear most of the stories? Why on social media of course – Twitter, Instagram, Facebook, YouTube, you name it, and the stories are out there.

The stories which seem to receive the majority of likes and praise appear to be ones where incomplete quadriplegics or paraplegics have gained enough muscle function to take their first step, wiggle their toe, etc. I think that’s great and creates a lot of hope for people, but there are people who are also incredible inspirations who you never even hear about – it’s likely you never will either.

There are so many folks I know with disabilities who face adversity head-on just like Sisyphus rolling the boulder up the hill only to have it fall down again, and then roll it right back up. It’s like Groundhog Day with a giant rock up a mountain. It’s frustrating but it’s often times the “norm” in life when living with a disability. You battle one medical challenge and recover from it only to have another one bite you in the ass. However, these folks just keep going and going and going and going … picture the Energizer Bunny on steroids. Yup, these are the folks I want to highlight today and a few of their stories because while I oftentimes receive praise for my positive attitude, dark humor, and quirky disposition – I accredit it to so many others.

You see, despite my medical challenges, care giving roadblocks, and endless pain – I am fortunate enough to have an incredible family surround me, am financially stable, and am  blessed with a father who taught me how to express myself through writing.

Countless folks I know don’t have the time, money, resources, energy or the ability to express themselves in a public way because they’re having to deal with so many challenges being thrown their way simultaneously.

I spend quite a fair amount of time on my Facebook spinal cord groups because these folks understand me and what I’ve been through, dealt with many similar challenges, and been to hell and back – all while gritting their teeth and coming back stronger on the other side.

I don’t care who you are or what your obstacles are – whether you be a single mom trying to feed multiple children on minimum wage, a cancer survivor, suffering from a mental illness, disabled or anything else. My point is that whatever you face in a day may seem small or giant to someone else, but you faced it, dealt with it, and came out the other side.  You may be a little worse for wear and the problems may come back, but you made it through a day. Sometimes that’s all we can do, make it through the day no matter what the issue is.

I want to commend those, especially those in wheelchairs, since that is my world, who you don’t read about in the newspapers getting a new exoskeleton to walk, but those who have been through hell and back several times, and still manage to shoot you a smile or words of encouragement after they’ve had a rough day.

In statistics there are always outliers – “a person or thing differing from all other members of a particular group or set.”

Many of the stories I read on social media of these incredibly inspirational folks who are disabled and who have managed to climb Mount Kilimanjaro on the back of someone, start a national dance group, take a 2000 mile bike ride across the United States, and so many more wild stories are, indeed, outliers. I call them the inspirational “Wow” people.

These “Wow” people are not the norm and I am always amazed at what they accomplish. I know they have dedicated their lives to working extremely hard and it took an incredible amount of blood, sweat, and tears to get where they are today. Many of us should continue to strive to be our own version of “wow” people, but the definition of being “wow” in your own life can be as simple as finally putting on your pants for the first time in bed or getting in your wheelchair alone, making dinner, cleaning the house, holding the door for a stranger, etc.

The point is the “wow” moments in your life can be so small and while we all crave attention as human beings for our accomplishments; I feel we get discouraged sometimes when we don’t live up to our fellow man to accomplish something 10 times as “Wow” according to public opinion.

My Inspirations

I gather much of my inspiration from many of the folks I mentor, many from my spinal cord Facebook groups, and the people I meet on a weekly basis.

When I was dealing with my pressure sore several years ago, which left me in bed for a year, and two major surgeries later to fix it, I was feeling sorry for myself. I did my best to meditate, read, work, but the fact of the matter is I was staring at four walls for a very long time. This should have be enough to drive even the most determined person bat shit bananas. Admittedly, there were moments where I found myself talking to myself when one of my caregivers walked in and asked me what the heck I was doing?

Anyway, this is when I started to join the spinal cord Facebook groups. I met a lady who had been through what I had x20 and not in a fun happy kind of way. She, too, suffered from a pressure sore on her behind, but she had been through multiple surgeries, wound vacuums, oxygen Chambers, and had been cooped up in her room for 2 1/2 … Yikes !!!

After the end of her 2 1/2 year nightmare something as simple as getting up in her chair everyday was her own inspiration. She didn’t write about it or share it with the world because she was in a constant self-contained warzone. By the end of her war she just wanted a little bit of peace and the happiness of simply getting up each day, which was consolation enough for her.

We need those folks on social media creating the public inspiration stories, but I would be remiss not to recognize those like her who most will ever hear about, the battle she overcame, and, who knows, perhaps she drew inspiration to keep going from a story she read online?

The point is inspiration lurks in the most unlikely of places if you look for it. When I was going through my own personal hell and I spoke with this woman she was my inspiration. She got me through the worst of the nights and she probably doesn’t even know it! I tried to reach back out to her, but never received a response. However, she changed my life behind the scenes.

There was another lady who made an interesting comment on one of my Facebook groups and she was from Africa. She couldn’t understand why many of the people on the group were talking about handicap parking issues, medical challenges, relationship problems, etc. She is from Africa and grew up in a society where the disabled are not even viewed as basic citizens or even humans for that matter.

She didn’t have a wheelchair, peopled carry her on their backs, and she was only allowed to go outside if someone was kind enough to take her. She was a prisoner in her home, her world, and her life.  I couldn’t blame her why she didn’t understand why we were talking about silly things (to her) like relationships when she could barely get outside her house.

I am very much against comparing oneself to another. I know we all do it and it’s human nature, but as I’ve said time and time again, one person’s tragedy may be a walk in the park to another person based on their circumstances. We all have our own challenges no matter if others think they are small or large. Of course I think about the fact that I am not starving in Africa and how lucky I am, but I also realize that my problems are real, and so are yours!

While this woman may have been complaining about us Americans and what a great life we live … from her perspective she’s not wrong, but many of our perspectives, here in the United States, the issue of handicap parking, for example, is a big deal.

What this woman didn’t realize is that she provided inspiration to me that day. I was inspired with how she got to a computer and joined in the group. Despite her comments she clearly longed-for community, and while she may not know it, I was sitting back thinking about all the incredible people in this country who have fought for disabled rights.

Conclusion

Suffering has always been part of the human condition, but so has hope.  Life can seem like an endless series of disappointments if we are not open-minded to look for the glimmer of sunshine, rainbows, and leprechauns at the end of it.

There may be days, try as you might where you just can’t find hope hiding around the corner … those little leprechauns are sure tricky to find sometimes!

I find it useful on those days to take a breath and find something that inspires me in an unlikely place.  It may be small such as appreciating that while I don’t have the use of my fingers I can bend my wrist upwards to hold my cell phone.  When I do have those days where I keep chasing a leprechaun and he keeps getting away for me, sometimes I do retreat, but if you look for it, that little inspirational leprechaun, whatever form he may take, is always there waiting for you.

PARALYZED MERMAID Sighted in the OCEAN – TRANQUIL ADVENTURES in Key Largo

The last five weeks have been a world wind of adventure and new beginnings for my husband and me.  We went down to Miami for three weeks in the middle of October for our annual relaxation and recharge trip to see friends, family, and explore new handicap accessible adventures.

We returned back to Raleigh, North Carolina to quickly close on our first condo home together!  It’s been nonstop the last two weeks working with contractors to make my bathroom accessible before we move into our new home in the New Year.  So many wonderful changes, but we’ve been busy.  So, I apologize for the Quirky Quad hiatusJ

While we were in Miami we were surrounded by friends and family on so many adventures, relaxing at Tiki hut bars, having piña colada’s at sunset, taking accessible boat rides at Shake-a-Leg sailing school, and so much more.

However, this year I really wanted to be able to get into the ocean, snorkel, and go on new adventures.  I looked far and wide, but I could not find any accessible boats that had a seat to lower me into the ocean so I could go snorkeling with my husband.

I broke my neck in the Bahamas 9 years ago at my home and other than a brief dalliance in the ocean on a cruise in Mexico two years ago, I’ve been unable to get back into the beautiful waters of the ocean.  I’d like to head back to the Bahamas in the next year or so, but I wanted practice to make sure I could swim as well in the ocean as I am able to in the pool.

On our trip to Miami last year many of my wheelchair friends told me about this gentleman named Captain (Capt.) Mick who runs a nonprofit organization called Tranquil Adventures in Key Largo (https://activedisabledamericans.org/).  Somehow time got away from us last year, but this year I was determined to make it happen. Continue reading

DISABLED ENTREPRENEURS – THE POWER OF CHANGE

The obstacles many of us face with disabilities on a daily basis are challenging enough without having to constantly fight the uphill battle for basic medical supplies we need with insurance companies, durable medical suppliers, and the labyrinth of government assistance.  Many of us strive to create and live our lives to the fullest, but we are, oftentimes, faced with one roadblock after another.  The sheer determination and will of living with a disability is commendable enough, but there are so many people with disabilities who take that extra step to break the barriers within the business community in order to help their fellow disabled live a more independent life.

Read on Push living Magazine: https://pushliving.com/disabled-entrepreneurs-the-power-of-change/

 

THE “DEVILISH” RASCAL WITHIN – CHRONIC PAIN

Writing is a therapeutic activity for me as it helps calm my mind, reduces my pain levels, and allows me to try and help others from afar.  Over the last two weeks I repeatedly opened a new word document to write my next article only to find myself closing the program down after a few sentences.  This process repeated over and over again, and I chalked it up to writers block.

The other day as I was sitting on my computer thinking more critically about why I could not put words on paper as I kept fidgeting in every direction in my wheelchair unable to find a comfortable position.  I started to notice the pain in my neck has slowly been increasing over the last several weeks for no immediately obvious reason.  I had not changed anything in my routine, my diet, my exercise program, etc., but the piercing feeling of knives running down the scar on the back of my neck from one of my surgeries continued to persist.  This new pain has prevented me from maintaining my laser focus as I am usually accustomed to.

This prompted me to think about chronic pain more critically.  I scrolled back through many of my articles over the last several years and realized I have never taken the time to describe what chronic pain means to me and likely for the millions who suffer from it too.

Pain stems from inflammation in the body because inflammation is part of the immune system’s response to danger.  It’s a hugely complicated process to prepare our body to fight off hostile forces.  There are two main types of pain in our body – Acute Pain and Chronic Pain.

Acute pain usually comes on suddenly and is caused by something specific.  Acute pain does not last longer than six months and goes away when there’s no longer an underlying cause for the pain such as surgery, broken bones, dental work, burns or cuts, etc.

Chronic pain is ongoing and usually last longer than six months.  This type of pain can continue even after the injury or illness that caused it has healed or gone away.  Pain signals remain active in the nervous system for weeks, months, or years.  Chronic pain can include headaches, nerve pain, cancer, arthritis, fibromyalgia, etc.

A majority of folks who sustain a spinal cord injury suffer from extreme chronic pain in many forms after their accident. Before I broke my neck I would look at somebody in a wheelchair and wonder what they felt? … I thought they couldn’t feel their legs or their stomach, etc. I was epically wrong! Continue reading

Adaptive Technology Life Hacks

One of the first things we tend do in the morning is head to the computer to check emails, read the news, browse social media, etc. Many of these tasks are automatic, as we push the power button on our computer, move our mouse to the right icon to open the internet, and use the dexterity in our fingers to type the keys so seamlessly. Fortunately, touchscreen technology has made these things much more convenient. However, while some people are able to do everything on their touchscreen, some need complex software to be able to go about their daily lives at work.

A challenge faced by many who are quadriplegic and don’t have the use of our hands or arms, is how to automate many of these processes to make technology less intimidating, since many of us depend on “devices” in this day and age.

I need the full computing power of a laptop every day to work as a day trader, editor, writer, and to interact with the world, as I am home most of the time throughout the week. While I have a caregiver to help with my physical needs, the one area of privacy I need in my life is when I enter the digital world. I want to be as independent as possible.

Over the years, I’ve experimented with different adaptive technology equipment and software.  I’ve gathered input from many of my fellow spinal cord injury friends on what they use to interact in the digital world.  For many whose jobs don’t require constant use of a laptop or desktop, a tablet is sufficient for them, and they can use their paralyzed fingers to do all of their typing.  However, my needs are different and I’ve put together a list of adapted technologies with videos and links to show you how I work around some of the physical challenges I face.

 

Read the rest on Push Living Magazine: https://pushliving.com/adaptive-technology-life-hacks/

 

 

To Be or Not To Be an “INSPIRATION PORN STAR?”

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“Inspiration Porn” is a term I have been reading about lately in many articles across different forums.  At first I was confused as to what was behind the meaning, but from my understanding, it’s when people who don’t know you see you in a wheelchair, approach you, and tell you what an inspiration you are.  Mind you they don’t have any back story on who you may be except that they see a person in a wheelchair or with a disability.  They then proceed to tell you what an inspiration you and I assume it is meant for simply being in a wheelchair.

There appears to be much controversy over this as many folks, whom I have spoken with, are not necessarily offended, but frustrated at the fact that able-bodied people see them as an inspiration for just having a disability.  You may be a lazy person with no ambition, but simply because you are in a wheelchair you are an inspiration to them.  I can certainly understand why this would aggravate many because people with disabilities since they just want to be seen as “normal” people who are complemented on being inspiration for what they do; not just for the fact that they are in a wheelchair.

However, I have a slightly different outlook and perhaps my dark sense of humor might contribute to this, but when someone calls me an inspiration even when I am just sitting quietly in a corner I always seem to find myself chuckling in amusement.  Also, I love to be different and my wheelchair is just one part of my life that sets me apart from many others.

The way I look at it is this – Continue reading

“THE RIGHT CIRCUMSTANCES”

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

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

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

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

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

 

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

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

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

Read the rest on PUSH LIVING MAGAZINE:

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

 

ROMANCE RE-DEFINED

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

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

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

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

Let me explain. Continue reading