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

ROYAL CARIBBEAN CRUISE ADVENTURE (Part 2)

Continuing on with our Royal Caribbean Cruise Adventures …

We spent the first night, Sunday night, on the ship a little later than we planned dancing the night away. On Monday morning we docked in Key West, Florida for our first day’s adventure.

DAY 2 – Key West, Florida

We docked right in the center of the city of the island of Key West. For those of you not familiar with Key West, it is the coolest little funky island, and is the farthest South Island on the chain of the Florida Keys. It takes about 3 ½ hours to drive there on one road from Miami, Florida. It is filled with eclectic bars, unique restaurants with their own personalities, 1 million little shops with fabulous trinkets, and a group of folks who are so unbelievably laid-back. Most of the locals on Key West are the kind of people you just want to hang out with with the beer by the water, and hear their life adventures.

“The Port of Key West”

I’ve been to Key West many times before as I previously lived in Miami for about 10 years. On one of my adventures down to Key West with one of my great friends from college we ventured down to the island for something called Fantasy Fest. Fantasy Fest is kind of like a Mardi Gras down in the keys. Thousands of folks drive down, dress up in the most wonderfully outrageous costumes, walk the streets, and party the night away. When I was 21 we headed down to Key West, but we forgot to book a hotel. So, we took my sisters truck and decided we would find a parking lot, and sleep in the back cab.

I was unbelievably surprised at the copious amounts of folks strolling around in giant penis costumes, body paint, and a ridiculous amount of other fun filled costumes. Of course we got ourselves into all kinds of devious trouble, met cute boys, partied the night away, and by 3 AM in the morning we ventured back to a church parking lot where we paid $70 to park our car for the night. When we woke up in the morning we were sleeping in the back of the pickup truck with our little feet hanging out the back side. We woke up to some strange folks tickling our feet… I’m not kidding. It was disturbing and hilarious all at the same time.

Anyway, I had the opportunity to take my power chair off the ship as Key West is relatively accessible. There is this one fabulous restaurant I’d remembered from years prior called Blue Heaven that was wildly eclectic with the best pancakes I’ve ever eaten, and a laid-back atmosphere that made you want to just sit in a hammock with the Corona, and drink the day away. Unfortunately, we only had a few hours to dive into Key West, so I had to make a strict itinerary so we could see a few things before we headed back to the ship. We met one of Aaron’s long-term family friends who had retired in Key West for lunch at Blue Heaven. We laughed, drank, ate delicious food, and then strolled around the little eclectic streets of Key West for hours. Key West doesn’t have many hotels, but rather these old colonial Bed & Breakfasts, which are just precious historical gems I would recommend if you head down that way. Now, they are not particularly handicap accessible, but if you’ve a strong man who can carry you up the stairs … Go for it!

“This sign display had been up for the last 15 years… I had been dying to take a picture and pay someone to watch them shower for a while ;-)”

 

We ended the afternoon at a Tiki hut bar, my absolute favorite, right on the ocean with some reggae music watching the boats sail by, and enjoying the 80° weather while sipping on some lovely alcoholic beverages.

As the day ended we boarded our ship and we were met by our fabulous concierge, Ligia. Continue reading

ROYAL CARIBBEAN CRUISE ADVENTURE (PART 1)

Sorry for the hiatus in my blog writing over the last several weeks, but, as many of you know, I was off on an international adventure with my boyfriend on a Royal Caribbean seven-day cruise to the Western Caribbean. My boyfriend and I have been together for about two years now and we wanted to do something exciting with just the two of us to see how we would be able to handle 10 days alone with no help.

I did a copious amount of research on accessible vacations and I decided on taking a cruise as I read so much about how cruise ships are accessible. We decided on a seven-day cruise leaving out of the Port of Tampa, Florida going to Key West, then to Cozumel, Mexico, then to Belize, and then to Costa Maya, Mexico. I have so many stories so I will split this adventure up into several blogs, so you don’t have to read a novel all at once!

Needless-to-say I was pretty nervous at the prospect of going alone with one person on a vacation who would be responsible for all of my care. I wanted to plan a trip where I could stay in one location and take mini adventures from day-to-day. I’m going to save my conclusions of my overall experience after I dive into all of the exciting, challenging, and fun excursions we embarked on for the last blog.

I prepared for this trip for weeks. I created a document with an extensive packing list for everything I might need in case I got stuck in a foreign country for whatever reason. Considering I’m mildly neurotic about making sure I don’t forget anything, I think I packed the kitchen sink, and then some. As the old saying goes “I rather have it and not need it, then need it and not have it!” Most of my suitcases were dedicated to medical supplies and just a few items to clothing. I also decided to bring a big egg crate because I have the most sensitive skin in the world, and I was unsure of the mattress surfaces on the ship beds.  I also brought along my manual chair for excursions in foreign countries as I was fairly confident a power wheelchair would not get me far in countries where ADA compliance is not quite as strict.

Our cruise was set to depart on Sunday, April 15 from Tampa, Florida. We decided to leave on that Friday and drive 9 ½ hours from Raleigh to Tampa in order to have a day exploring downtown Tampa, and meeting up with a longtime friend whom I had not seen in about four years. I’m sure I could’ve flown down to Tampa had it not been for not with the ridiculous amount of gear we were carrying with us. The drive went pretty smoothly and we checked into a hotel in downtown Tampa. Before meeting up with a friend for the afternoon to go play, drink, and frolic about we first needed to give me a shower, and wash my hair before heading onto the ship. This was quite an endeavor because at home I usually do a type of bed bath and then stick my head in the sink to wash my hair. This was clearly not an option, and while we did get a roll in shower I did not bring a shower chair with me because I just couldn’t fit anymore gear into the car.

In the typical roll-in showers in hotels they usually have a small pulldown shower seat, which is quite dangerous, but it is all we had to work with at the time. Aaron put many towels on the shower seat for padding, picked me up like a princess, and strategically sat me down on the shower bench while I held on for dear life. He got in the shower with me while I wrapped my arms around his body as he washed my hair and body. It was dangerously comical, but we made it work. I definitely don’t suggest this method unless you have a very strong man who can lift you up and make sure you don’t fall flat on the floor 🙂 We were testing out this shower method as the ship had a similar set up for a roll-in shower, and I needed to make sure we were capable of getting me semi-clean every few days on the ship.

When we headed to downtown Tampa to meet up with one of my great friends Jill. We absolutely fell in love with the town. We went to a famous area called Ybor city that has a Cuban influence where we watched cigars being rolled, smoked cigars, bounced around from one cool Cuban spot to another, and reminisced the night away with Jill. We decided that Tampa was worth a trip in and of itself one day as there are so many little gems the city has to offer in addition to the entire West Coast of Florida. I spent over 12 years in Miami, but somehow never managed to get out West.

On Sunday morning we packed up our gear at 5 AM in the morning in order to arrive down to the port of Tampa to board our Royal Caribbean ship, Rhapsody of Seas. Continue reading

Let’s Talk about Sex Baby

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I mean really, who doesn’t love sex? I suppose it is one of those taboo topics that you don’t talk about at the dinner table like politics or money, but it is such a natural act – I’m not quite sure why we are so weary to talk about the subject publicly.

Before my accident I thoroughly enjoyed sex, exploring my sexuality, and engaging in as much sex as I could 🙂 Admittedly, I probably had sex too young, but as the saying goes “curiosity killed the cat,” “curiosity killed my virginity.” I was a young teenager and I simply had to know what all the fuss was about. I even let a guy convince me that I could not go to high school a virgin because I would be the odd man out. How gullible we are as young teenagers!

For several years I couldn’t understand what all the fuss was about as I don’t think I was doing it quite right … Not that many teenagers, in my opinion, know how to enjoy sex anyway. I finally met a guy when I was living in the Bahamas one summer who was several years older than I was and he really taught me about the enjoyment of sex. I mean we literally had sex classes on a daily basis with respect to experimenting with what felt good to me, what felt good to him, trying different positions, oral sex, etc. It was also new and exciting to me, and by the time our lessons had completed at the end of the summer I felt like I had earned a degree in sexual pleasure … Probably not something most parents want to learn about their children as teenagers 😉

“Partying in my young 20’s with my sister”

Over the next 10 years before my accident I had multiple partners and I was not ashamed of it either. Naturally, I think I was called several “not so nice names” by women around me, but I simply didn’t care. I was a completely free spirit and enjoyed sex just as much as I did hiking in the wilderness. I wanted to keep a diary for the future of all of my “Sexcapades” because in my mind I thought one day I would always write a book about sex. At that time Chelsea Lately was one of my role models and she had a brilliant book called “One Night Stands.” While I did have some more thoughtful and influential mentors, she was definitely my sex mentor. I decided to keep a little black book with all of the men I had slept with over the years. Honestly, sometimes I couldn’t remember their names, but I remembered where I met them, what they were wearing, what they looked like, what we did, etc. I will spare you the hot and juicy details, but after my accident I completely forgot about this book.

When I broke my neck the concept of sex completely flew out the window for me. I considered myself “A sexual” at that time and figured sex was behind me, which did not make me very sad because I certainly had my fair share of fun for 27 years before my accident in 2010. However, years later amongst all of my things I found multiple pieces of paper stapled together with all of my sexual exploits in a box. I must admit I was laughing my ass off because I had forgotten about many of these gentlemen. I decided to take the time and type several pages of stapled paper into a digital black book of sorts. I still have it to this day and I think that is what probably prompted me to finally start dating five years after my accident. A funny inspiration, but my personal story none-the-less.

Post-Accident Sex Continue reading

New Zealand Wilderness Survival Trip (Part 2)

The Viking Adventure

As I wrote about in my previous blog our instructors did not let us know what adventure we would be partaking in until several hours before we headed out on an adventure. One of our first endeavors was taking a several day trip in these large wooden old-fashioned sailboats called Cutters.

Think of those old primitive wooden boats with giant oars that the Vikings used to row with. Well, somehow Outward Bound had constructed some of these boats with a very primitive sail. We packed up a minimal amount of gear and food into some dry bags, and were told to swim with our gear fully loaded to get out to the boat. I didn’t think this was a particularly brilliant idea because we were going to be soaking wet and freezing to start our adventure. I suppose this not only tested our physical endurance, but mental as well. We hoisted our shivering bodies into this old boat and listened to our instructors as they taught us how to navigate the waters in front of us. Fortunately I knew how to sail, so I was eager help my teammates learn how to how to a sail, understand wind direction, and navigate the oceans.

What we did not count on was no wind at all. We were not moving anywhere – we were simply drifting out to sea.  Continue reading

New Zealand Wilderness Survival Trip (Part 1)

After receiving a slew of emails regarding my last blog on my wilderness survival trip in Australia I was asked to write another blog on one of my many wild wilderness adventures. So, today I will diving into my Outward Bound wilderness survival trip in New Zealand in 2000. My recollection of this trip came back to me when one of my old teachers from high school sent me a 5 page email I sent him and the family after my voyage giving a detailed account of all of my adventures. It was wild to read something I had written 18 years ago. Quite frankly I was appalled at my grammar, lack of spelling, misuse of commas, and poor grasp of the English language. 🙂

Regardless, after reading the email it took me back to this trip like I was there yesterday. There was only one surviving photograph from my trip 18 years ago (see below) … The rest of the photos I found pretty similar photos from other folks who participated in this New Zealand Outward Bound Trip over the years.

“The 17-year-old “Ali” with a look of utter joy upon completion of the trip”

Growing up in Europe and then transferring to school in the United States I ended up graduating early from high school. I decided to take some time off before heading to Occidental College in Pasadena, Los Angeles. I decided to embark on a life-changing experience to Beijing, China. However, when I graduated I had several months to spare before heading over to Asia and I couldn’t quite figure out what to do with my summer. I had been on previous adventure trips in my early teens, but none of them really offered me a test of my endurance and will.

I rigorously started researching different outdoor survival programs and came across Outward Bound. Outward Bound was originally founded to help troubled teenagers using trips into the wilderness to teach them responsibility, leadership, accountability, etc. Initially I had hesitations as I did not consider myself conventionally troubled, but I really liked the idea of a challenge. I went on their website, but you must remember in 2000 websites were still quite primitive, so I did not have that much information to go on, but I signed up for a trip as far away as I could possibly go. New Zealand was the winner!

When I graduated high school I went back home to the Bahamas for several weeks to start training because I read that there was a physical fitness test one had to pass upon arriving in New Zealand. Every morning the Bahamas I would wake up at the crack of dawn, run several miles in 90° heat, stripped down to my bathing suit into the crystal-clear Bahamian waters and swim for hours, do an ungodly amount of sit ups, push-ups, and whatever else I could think of. I was 17 years old and the time had come to fly 27 hours to the other side of the world. I wasn’t quite sure what gear I had to pack, so I packed light, and I was told what I needed would be provided for me when I reached my destination. Continue reading

AUSTRALIAN WILDERNESS SURVIVAL ADVENTURE

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I’m often asked what keeps me going during those dark times, seemingly insurmountable challenges I constantly face with spinal cord injury, and how I remain determined to try and live a life that does not consume me with anger for everything I have been through. I must admit there are times when I do feel like giving up, but there’s something inside me that keeps telling me to push forward just a little bit more each day. I’m sure everyone who has dealt with tragedy in their life have their own coping techniques, but I attribute much of what I’ve accomplished to who I was before the accident.

You must remember I had 27 years of my life before I broke my neck and only 7 ½ years of being paralyzed. My parents raised me to always be curious, challenge the unknown, explore life beyond your comfort zone, and above all be kind to others. I was an extremely mischievous teenager, to say the least, but somehow I always managed to get myself out of uniquely perplexing situations before things went south. I like to think that I was “Responsibly Irresponsible.” I would plan out an adventure, write down all of the things that could possibly go wrong, how I would fix them, and then hope for the best.

To understand a little bit more about my nature I’d like to tell you a tale of one of my many adventures that would always bring me back to a path of serenity and focus when things were not going my way in life. I’ve always traveled around the world, much of it on my own, and I would find myself getting bogged down in life’s drama, people, the stresses of self-expectations I would constantly put on myself with respect to what I was hoping to accomplish by what age, etc. With this in mind, I started embarking on wilderness survival adventures around the world as a young teenager. As the years progressed I would find different wilderness adventure companies that challenged me physically, mentally, and really tested my strength of will in the wilderness for months on end.

At 23 years old I had just graduated from the University of Miami, could not find a job because, frankly, I was much too cocky for my own good, I started to get into drugs, and I just could not see a way out of life. Eventually, I made a decision to sign up for a very intense several month wilderness survival course in Western Australia, specifically the Kimberly Mountains.

On this trip I would be accompanied by 10 to 12 fellow hikers and one instructor. On these trips you learn to navigate the rough terrains of the Australian outback in degrees sweltering over 100° per day, carrying a 60-80lb pack on your back, hiking from water source to water source, sometimes killing your own food, navigating topographical maps with only a compass and no GPS, building leadership skills, and running into whatever dangers might be headed your way that day. I had already been on several wilderness adventures, but this was going to be by far the most challenging for me mentally and physically.

I purchased all of my necessary gear, did my research, and flew over 25 hours to reach my destination in Boone, Australia, which was located on the West Coast of the continent. I didn’t know what I was in for at that time, but I was eager to get my head on straight so I could find some clarity in life at 23 years old. I might’ve been having a midlife crisis of 23… Who knows 🙂 I arrived at a hostile the night before I was set to meet my team, and wrote in my journal about how I was feeling at that moment. I was feeling like a failure, low, curious as to how I was going to get my life going, I just broken up with a very serious boyfriend, and I had no idea where life was about to lead me.

 

Our Group on Day 1 before the Adventures Begin

I woke up bright and early at the crack of dawn the next morning, and met my team at the designated location at 6 AM in the morning. We went through a several hour orientation, were ordered to get rid of most of the things we had prepared to bring, and instructed to only pack what we were comfortable to carry for over eight hours a day. The packs normally ranged between 60 to 80lbs. There were, of course, a few items I stuck in my pack because I simply could not do without them. I was wearing contact lenses at the time, so I clearly needed to bring my contact solution, a little mirror, and antibacterial solution for my fingers. I refused to wear glasses … I don’t know why. I also snuck in a couple extra pairs of clean socks and underwear, and biodegradable baby wipes. We were supposed to dig holes in the wilderness when we had to use the bathroom and wipe our bums with leaves. I had done this on one of my prior wilderness survival trips, and let me tell you the amount of poison ivy I got in places where the sun does not shine was no joke! So, I stuck these little babies in when no one was looking 🙂 Continue reading

Moving Mountains Paralyzed: An Insurance Battle to Remember!

When I think of Moving Mountains Paralyzed Insurance Companies the analogy of a Goat herder comes to mind. The Goatherder will watch out for its flock as long as it produces enough fur for the season for the goat herder to line his financial pockets. The moment the goat gets out of line or stops growing fur, the herder will slaughter the goat, and eat it for dinner.

Similarly to insurance companies … As long as you pay your premium and don’t step out of line an insurance company will offer you basic protection. However, if you start creating a commotion, appealing everything, and asking for more — insurance companies will find some way to slap you with financial bills that seem unimaginable.
Since my accident 7 ½ years ago I’ve been a goat that has been slaughtered by insurance companies and I have also been a goat that has managed to break free. Navigating the waters of insurance companies to get what you need, especially when you are paralyzed, requires voracious tenacity, extreme dedication, a lot of hard work, patience, and knowledge of how to work within grey areas.

Read the rest on Push living magazine at:

https://pushliving.com/moving-mountains-paralyzed-quirky-quad-guide-winning-w-insurance/