Tag: positive thinking

Alive Day

Alive Day

Alive day

August 23, 2014 is the kind of day you don’t forget. Like a birthday, wedding anniversary, high school graduation, and the birth of a child you do not forget the traumatic events that change the course of your life, without consent, forever changing how you live. On my Alive Day, several years ago a seemingly innocent dive from the bow of my boat altered my life forever. But this is more of a telling of what came afterwards and not a call for pity.

Since my alive day I have:

  • Cheated death several times during my hospitalization.
  • Come to the realization that the VA healthcare system is superior to any civilian run spinal cord facility.
  • Realized the depth that my friends and family care for me.
  • Made many great new friends.
  • Used my personal experience to raise awareness for people living with spinal cord injuries.
  • Continue to be a partner to my fiancé and father to my three girls.
  • Received assistance from all types of sources. Including: Paralyzed Veterans of America, Chive Charities, Department of the VA, Stack-Up, The Internet
  • Renewed my faith in family, particularly my parents who have been more helpful than I could’ve imagined.

My Alive Day

Besides advocating for people and doing the charitable work that I do I have not changed that much. My fiancé Tina may disagree with that; but my mental character and capacities seem to be the same. It’s very important to understand that catastrophic injuries do not have to alter the type of individual you are, or the type of life you live. It definitely should not stop anyone from getting up every morning and facing the day just like anyone else. I’m no more an inspiration or hero then the person who works and takes care of the family. I just do it without hands.

Make sure every day that you meet your potential, hug your loved ones, and don’t put off anything that means anything. Life can change literally in the blink of an eye. #Charliestrong

Alive Day Video

[embedyt] https://www.youtube.com/watch?v=UZhHReD4j8g[/embedyt]

Clinical trials

Would You Trust This Guy? Mistrust Leads to Lack of Participation in Clinical Trials.

| Charles Merritt

PARTICIPATION IN CLINICAL STUDIES. OR LACK THEREOF.

As I sit here staring at the rain falling outside my bedroom window I noticed that as quickly as it began it has gone away and the sun is shining. I am sure there is a specific meteorological reasons for this which I have no idea about but it makes me think that as quickly as an injury or ailment comes with the right settings it can be made to go away.

This article is meant as an update to my current participation in local trials here in the United States. Also motivated by recent conversation I had with the Miami Project to Cure Paralysis concerning a clinical trial that I am eligible for through their program. Curiously enough I wondered how many people affected with spinal cord injury are participating in the studies and decided to do some research online. Unfortunately with spinal cord injury research there is not a lot online as far as statistical data to analyze the percentage of participation occurring. I did however find interesting statistics concerning cancer and the participation in clinical trials.

Specifically it showed that a higher percentage of adolescents are participating in clinical trials for cancers and with only a 3 to 5 % participation 10 million adults affected with cancer. I would assume that parents of children with cancer are more likely to attempt experimental trials to save their children as opposed to adults with cancer being willing to subject themselves to the same trials. With research showing that all treatments and breakthroughs we have found were birthed from clinical trials why are more people affected with these diseases contributing their time to assist in finding new treatments? From my own personal experience over the course of the last year and in speaking with other spinal cord injured individuals I’ve come up with some conclusions.

TRUST OR LACK THEREOF

Distrust of the medical system in general seems to be one of the major concerns of individuals with incurable diseases and participation in clinical trials. Mistrust: According to a review conducted by the Agency for Healthcare Research and Quality mistrust of research and the medical system is a frequently reported barrier to participating in clinical trials.

Most U.S. adults agree that clinical research participants are making a significant contribution to science. However, 49% also feel that clinical trial participants are gambling with their health and are treated like “guinea pigs.” (Counsel)

What leads to these feelings of mistrust from my perspective is lack of knowledge and ignorance of the clinical trial process specifically here in the United States which is governed by the Federal Department of Agriculture “FDA” and heavily scrutinized and is a process that has been proven to provide treatments and output successfully providing specific treatment goals for a spectrum of diseases and injuries. Specifically a majority of these clinical trials are done by private organizations, universities, and are not run by government scientists looking to squeeze information out of our brains. For the most part the government just regulates trials they do not become involved in them.

LACK OF AWARENESS

A national survey of cancer patients found that 85% of respondents were unaware that participating in a clinical trial was a treatment option for them. (Counsel)

With clinical trials regarding spinal cord injury it is almost as if you only hear about them in whispers and or the possibility or I saw this on the Internet or I watch this video etc. it’s difficult to know what trials are available for from the onset of a spinal cord injury because of the traumatic experience. The University of Miami conducts trials for individuals within nine hours of injury but if you’re not in Miami you don’t know about this if you are Miami you may not know about this. The most popular would be the Christopher and Dana Reeve’s Foundation that is thrust upon anyone with a spinal cord injury but for my own personal experience has not offered anything besides a free book.

So how do we go about raising awareness putting this information in the faces and hands of the people affected by these types of injuries to ensure that they know where to go, what to do, what the requirements are, and how they can become involved with clinical trials?

First and foremost people like me and others with spinal cord injury have to help each other. This is a new form of brotherhood that unless we band together will continue to be an incurable one. We must spread the word however we can to others affected by paralysis to ensure they receive correct information and encouragement to participate in trials. Individually we must be prepared to ask for help, ask for donations, put ourselves in uncomfortable situations that allow for us to put together the logistical and economic parts of being a part of these trials.

I implore everyone who knows someone affected with spinal cord injury to encourage them to seek out clinical trials which can be found here: WWW.CLINICALTRIALS.GOV

I’ve noticed a trend in areas that are heavy in spinal cord trials one being the University of California Los Angeles, Ohio, Miami, and for veterans the Bronx VA and James Haley VA in Tampa.

WWW.MIAMIPROJECT.MIAMI.EDU is a great resource as well and allows for walk-ins which I was over a month ago and immediately I was able to become part of the trials going on there.

I plan on going through every one of these trials that I possibly can and with the help of family friends and complete strangers and some blessings from God I will get to them.

To donate to my cause go to:

GET A T-SHIRT: www.booster.com/cure-paralysis

This fundraiser runs until October 2 so get your T-shirt while supplies last.

MAKE A CASH DONATION: www.gofundme.com/strongman-Charlie

You can also donate through PayPal www.Quadcapable.com/donate

 

Thank you for your interest in my article to connect with me:

Facebook.com/quadcapable

Twitter @Quadcapable

Check out other articles www.Quadcapable.com/quadblog

counsel http://iccnetwork.org/cancerfacts/ICC-CFS11.pdf

 

A day in the life

Three Things Not to Do As a Quadriplegic

| Charles Merritt

There are many hurdles living life as a quadriplegic for the most part a lot of them are similar to your average everyday ambulatory person. Obviously relationships, money, and day-to-day tasks etc. for the void that is our 24 hours a day life. There are certain things I found to be helpful when it comes to living life as a quadriplegic and in general. These aren’t specific to my injury but my situation is a great example of how to stay positive and always look forward.

1. Stop looking at the world as what you cannot do and start focusing on what you can do.

If there’s one thing I’ve learned through this injury despite my therapist’s persistence that I can do everything I did before is that I cannot. Understanding that simple fact has lead me to a greater acceptance of my limitations but also an increased motivation to improve on what I can do. I’m not saying to not strive for the unknown or for the impossible don’t stop shooting for the stars because you can wind up on the moon what I am saying is to not dwell on the negatives but focus improving positives.

2. Stop being so proud and allow people to help you.

So many people walk through life, no pun intended, feeling as if they are alone for no better reason than being too proud or afraid to ask for the help that they need. There are so many things we can do as human beings if we group together there is power in many but steps need to be taken by the individual to build upon the community. If I was told a year ago that I would be asking for help or donations for myself I would’ve laughed in your face but I realize now that it is not about that, it is about being a part of something bigger than yourself. That in itself is very powerful.

3. Don’t take your frustrations out on those people.

Probably the most important thing because of the situation you find yourself in as a quadriplegic you may feel like lashing out. I’m sure a lot of us feel this way without adding to it the frustration of not being able to use your arms and legs. When I feel frustrated I attempt to put myself into a meditative state of retrospection in hopes to find resolution to the current problem. For me that usually means asking others for help whether it be the people in my immediate circle, groups am involved with, or my network of friends and family. But what I do not do is blame others for my issues for my problems for my handicaps I do not treat them like any of this is their fault and I make sure I own my decisions whether good or bad.

Funny thing is while writing this I was served an eviction because my landlord didn’t pay her mortgage so bad things come and is not about the hurdles put in your way or the walls that life throw up it’s your ability to run and jump to move around to find answers and keep moving forward that defines you. So stop dwelling on what you cannot do and start working on and proving the things that you can.

A day in the life

How I Became a Quadriplegic

| Charles Merritt

THE START

There is nothing better than cruising on your new boat in the Gulf of Mexico enjoying the sun the surf and your beautiful wife (fiancé).  That’s exactly how my day was going on August 23, 2014, and how I became a Quadriplegic. Started off early that morning at my house in Central Florida where we packed up our boat sunscreen everything else we needed and headed to Anclote River Park to put our boat in the water. After a three-hour drive and a stop at Publix to pick up the usual boating drinks, we finally got the boat backed into the ramp.

THE RAMP

The ramp was something we hadn’t experienced before. There was a strong current from the river and when I put the boat in we had our first issue of the day. Once we released the boat from the trailer our mooring line came loose and the boat drifted to the ramp next to us. I jumped in to tried to push the boat as I swam, which wasn’t the smartest move, and our neighboring boaters helped out as well.  Finally, after 20 minutes of struggle, we got her secured to the dock.  Put the cooler in then backed out. We then started moving through the channel to rendezvous with our friends in their boats.

THE MEETUP

Originally, the plans were to meet on the eastern side of Anclote Key. When we arrived at the designated spot there was no one to be seen. Calling one of our friends we found that they were on the western side of the island, the Gulf side. Meeting them in the channel and following him and his wife to the other side of the key.

Anclote Key click update
We have arrived!

THE FUN

It only took us about an hour and three people to get anchored. But is well worth the effort if you see from the picture above just how beautiful it was that day. And yes that is my beautiful fiancée Tina floating in 5 to 6 feet of water enjoying the sun.  Shortly after arriving and a couple dives off the boat later I made one final dive into the water that changed my and my family’s life forever.

THEN IT HAPPENED

I finally accepted my fate.  I couldn’t swim.  I couldn’t breathe. I just floated.

Upon diving into the water I blacked out and then woke up floating several feet from the bow of my boat at that moment I knew something was wrong.   Gasping for air I yelled for Tina who thought I was joking. So I floated there until I finally accepted my fate.  I couldn’t swim.  I couldn’t breathe. I just floated. I was going to drown and die right then.  Thankfully, at that moment our friends noticed me and swam over. They began to pull me to the shore.  Where I could breathe again.  But nothing below my neck was working.  I was paralyzed.

At that point, I called for Tina again and she came to the beach with the rest of us and dialed 911. Shortly after, fish and wildlife, The Sheriff’s Department, Coast Guard, and then the Bay flight rescue helicopter picked me up and flew me to the hospital. After being put on and off two different boats the helicopter was chosen to be the best choice.

THE REST

A lot of the hospital stay was chronicled through my dad’s Facebook page and a fan page set up on Facebook as well. I plan on occupying a lot of this blog with a lot of those posts. Some were very moving.