NAVIGATING THE CORONA PANDEMIC – A DIFFERENT PERSPECTIVE

Today is the first quiet moment I have had in over six weeks and I realized I had not engaged in one of my favorite activities – Writing!  Life has been a fast-paced world wind of excitement, chaos, joy, and hustle recently.  This doesn’t even include the elephant in the room at the moment of our current Pandemic of the Coronavirus!

In November my husband and I purchased our first home, started renovations, packed up our old apartment, and made the Herculean effort of moving a quadriplegic to a new home all before the race of the Coronavirus.  It has been nonstop for me and I’m elated to find a quiet moment today to get back to what I love.

We are finally moved into our beautiful new home, getting settled in, and trying to make our home finally feel like a home.  In short, we have been “Adulting!”  I had a singular mission of trying to move into our home, but on the tail end of moving the Coronavirus started moving at accelerated rate – although not before we were able to physically get into our new condo.  Thankfully, at present, we are quarantined at home and are both still busy working while still having endless To-Do projects.

My husband, Aaron, has been working tirelessly for the past 9 months and we have barely had time to spend together, so it’s a treat to be able to be locked in the house together.  When we don’t feel like it’s such a treat to be locked in together 24/7 — then we have wine 😉

Over the last 10 years I’ve never really been able to take a real shower and having my newly renovated bathroom is a dream come true.  Last week I had my ceiling lift installed, which was so fun as I was swinging like a monkey.

Now, I don’t have a shower chair yet as things have pretty much come to a stop from a retail standpoint with the pandemic, but looking at my shower at the moment is equally as gratifying.  I’m sure once I take a real shower I will have a different take on it.

The last several weeks have not been without their challenges though as millions of Americans are presently feeling.  I lost a caregiver, found a great new one, but am unable to physically work with him yet as we have “stay at home” orders directed by the state of North Carolina. Bringing someone into your home during a pandemic is probably not a brilliant idea considering I have a compromised immune system and less lung function than most.

I’ve spoken to dozens of friends who are disabled and able-bodied, and life generally is not looking rosy for most folks right now.  I don’t even know what this country will look like when we are done with this, how we will rebuild, how the financial system is going to recover after a $2 trillion stimulus, but there is one thing I do know.  The only way we are going to get through this is if we stick together and not trample thy neighbor for a roll of toilet paper.

I was chatting with one of my best friends the other day who lives in China and she was saying that they were on a very strict lock down, which would likely not work in a country such as ours, but no one was fighting over toilet paper – fighting over N95 masks, yes, but the basic supplies seemed to be readily available in the grocery stores.  However, China physically locked down their citizens in their homes and only one member of the family was allowed to go out every several days to get supplies.  Now, in Europe, well, I can’t say anything about the toilet paper, but I do know that Bidet’s are much more plentiful 😉

Joking aside, many people I know are going crazy in their homes with their spouses or their children, etc.  From a financial standpoint I understand how many people are seriously suffering and being locked inside with the fear of uncertainty certainly does not help mental sanity any.

I, however, being disabled for the last 10 years and going through medical hell, have a slightly different perspective on being trapped at home.  When you have a disability, degenerative disease, or any other serious medical issue in your life the tendency to live in fear can become the norm.  I lived in fear for many years, but it was consuming me alive and I eventually had to find a different way to live.  The point came for me about five years ago when I developed a major pressure sore on my tailbone, spent almost an entire year in bed, underwent multiple surgeries, and didn’t actually know if I would survive past the year.

I started meditating every day and creating a structured schedule of working, reading fun books, the news, educational articles, etc.  Even though I was trapped inside my bedroom with four white walls at the time I woke up every day in the morning, performed my duties with my caregivers, worked, meditated, exercised my arms as best I could, and created a world inside my head for survival.  At first it was torture and challenging to do the same thing every day, day in and day out, but over time I learned to enjoy my own company.  I had to figure out for myself that even if I was not paralyzed I could be just as miserable walking around in a beautiful park on a sunny day as I could be trapped inside a room with four walls.

2015 Trapped in Bed – Still had flowers in the Hair!

Many of us know that happiness does not come from what we have, but from inside ourselves.  Naturally, this is easier said than done, but just as if you want to start getting in shape you have to start somewhere by going to the gym even when it’s painful.  Baby steps.

So, while being quarantined is certainly disrupting life for us, I have to remind myself when I feel antsy inside my home that I’m still physically able to get up in the my wheelchair, roll around the house, have the mental capacity to read a book or have a conversation with someone, etc.  Don’t misunderstand me, I still love my “Netflix and Chill” time with my husband, but we are not glued to the television either.

Life is all about perspective and I’m sure we will each gain quite a lot of it at the tail end of this pandemic and for years to come, but while we are in the eye of the storm at the moment I find it important to take stock of what we actually do have right now.

On that note … I’m looking over in the kitchen at my husband as I write this article and he is preparing me a Chicken Satay lunch on this beautiful Saturday in Raleigh, North Carolina.  Just yesterday afternoon we were able to go outside and walk around our little small condo community with not a soul in sight & of course a glass of wine as we rolled around!

Until next time folks …

 

Aquatic Therapy – The Story of a Paralyzed Mermaid

 

Thinking back to my childhood I recall playing the “what do you want to be when you grow up” game with other kids.  My answer was always a resounding “mermaid.”  The water has always been such a central part of my life having grown up in the Bahamas.  When I broke my neck nearly 10 years ago, I couldn’t imagine how life would continue if I was unable to get back to the aquatic lifestyle I had become accustomed to.

When I was in the ICU and inpatient rehab the first few months after my accident, I was also battling a stage III pressure sore on my sacrum.   I could not wrap my head around how I would ever get back into the water.  I saw many other SCI folks start to dive back into activities in rehab, but I was not as fortunate. I was confined to bed rest all day, except for several hours of rehab, due to the raging pressure sore I had sustained during transport from the Bahamas to Miami after the accident.

While I stayed focused in rehab, worked on my computer, and made the best of my situation, I started to give up hope that I would ever get back into the water again.  Once I was released from rehab and sent home, I kept asking my caregivers and my mom every day if my pressure sore was healing, and I kept asking wound nurses how long it would take.  I didn’t know if I going to be able to get back in the water, but my family and I kept researching swim instructors anyway.  Somehow, I held onto a glimmer of hope despite the mounting medical challenges I was facing.

Read the rest on Push Living Magazine:  https://pushliving.com/aquatic-therapy-a-story-of-a-paralyzed-mermaid/

 

INTIMACY AND ROMANCE AFTER MARRIAGE – “NEWLYWED LIFE”

If you get married in your early 20’s I’m sure life after marriage, especially newlywed life, is comprised of sex, unicorns, and rainbows!  However, I think when you get married in your mid 30’s or later the concept of romance and intimacy after marriage profoundly changes.  So many television shows and movies over the last century have romanticized newlywed life for so many.

In several months I’m coming up on my one year anniversary of marrying my one and only, my main squeeze, and my partner in crime.  I can only share with you what I’ve learned thus far and I’m sure the life lessons will continue to roll in as the year’s progress.

Being a newlywed comes with so many new adventures, challenges, and compromises.  I think we were unique as a couple respect to understanding the intimacies of daily life because of my situation with spinal cord injury.  My “now” husband had to intimately understand everything that comes along with my care, my life, and issues I face.  I find so many couples don’t really get to know one another until years after marriage, but there are advantages to having a disability as you really need to show your partner your whole self because they need to know what they are getting into if they want to be with you for life.

Read the Rest on Push Living Magazine: https://pushliving.com/intimacy-and-romance-after-marriage-newlywed-life/

 

The Downfall of Our Healthcare System: A Harsh Reality

The battle I was fighting today was one of in-network providers. I need to give you little context as to how healthcare has changed over the last several years. While I understand Obama Care has many faults, several years ago the system was much more amenable to those in need than it is today. Frankly none of the systems we have work for healthcare today, but things have gotten MUCH worse over the last few years.

While I do work, this is really a fraction of what I do in my day. Many days are spent on hold for hours on end fighting with insurance companies, figuring out why a new part of my body has developed pain, driving around town to endless doctor’s appointments, handling the anxiety of hoping a caregiver will show up for work, and enduring the grueling process every single morning of having people put their fingers in my body just to go to the bathroom, and so much more – all at 36 years of age. This is not what I had envisioned my life to be no matter how much I make light of the situation I am in.

Today, however, my tears grew to rage as I finally got a human being on the phone from Blue Cross and Blue Shield. The fact that I have to fight for every detail to try and get covered by my health insurance is borderline criminal. Is it not enough to have to deal with the injury alone? I know I am not alone in this fight as so many of my other friends with spinal cord injuries are in a constant never ending war with bureaucracy trying to survive.

“A STORY OF THE GIGGLING UTERUS”

It all started with two little pills – one from above and one from below …

There are not often medical stories in my life that end up in giggles, smiles, and rainbows, but I am proud to say this one did!

In my adolescent years of spinal cord injury I developed several pulmonary embolism’s causing me to take blood thinners for several years.  As a result, high levels of estrogen in my blood (found in many contraceptive pills), which have the tendency to cause blood clots, would forever leave me in a situation where estrogen could quite literally kill me.  This posed a challenge for me as I became sexually active several years following my accident.

In my particular case, becoming pregnant would very likely result in my untimely demise.  Needless-to-say after being killed by several medical professionals years earlier due to a cockup with a certain medication; I was not particularly keen to repeat this experience nor have a little bun in my oven of my own. Continue reading

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.

Continue reading

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