advocacy, Current events, disability, Disability Employment, Motivation, SCI awareness, spinal cord disorder, spinal cord injury

Virtual Abilities Experience 2020

The Abilities Expo is an event that I have wanted to attend forever but travel and time always came into play. This year has been different in so many ways and I was finally able to attend because like many other aspects of our lives… it was virtual. I had a great experience with the Abilities Virtual Experience that was held November 20-22, 2020. It was organized in a way that allowed early access to the exhibit hall, workshops, events, product demonstrations, speakers, and live host schedule so I could plan ahead of time and save everything to my personal agenda.

David Korse- Abilities Expo CEO

I spent a majority of my time in the exhibit hall, which was extremely informative, fun, and very easy to navigate. I already knew some specific companies that I wanted to visit, but it also allowed an option to search the exhibit hall by means of keywords, categories, and an alphabetical directory. An aspect of the exhibit hall that I found extremely beneficial was all of the resources that were available after you selected any of the companies or organizations. Many of them offered brochures, a video library, a listing of the staff, and an option to chat with a representative from that specific booth. I was impressed and I did not leave any of the booths at the exhibit hall feeling like I could not find information that I was looking for.

I also spent some time on the live host channel, which was hosted by Paul Amadeus Lane, who is a radio personality, tech vlogger, and an Abilities Expo ambassador. I watched a great interview with the President of Permobil, Chuck Witkowski. It was a very informative session where new product launches and upcoming technologies were discussed. The live host channel also had various dance performances, comedy routines, and musical numbers.

Paul Amadeus Lane- Abilities Virtual Experience live host

Last but not least, another great aspect of this event is that everything was still available to access until December 13. I have taken advantage of this option and I revisited the Abilities Virtual website to watch events that I was unable to watch live. Overall, the entire experience was fun, interactive, and extremely informative. Also, it is an event that I would not have been able to attend unless it was offered virtually. All of these great resources were available right at my fingertips! One of the many things that I have learned about this amazing community of people who have a SCI/D, is that we know how to adapt to an ever changing and challenging world, and I am extremely proud to be a part of that community. The Virtual Abilities Expo reiterates this because they adapted and created an event that could reach an even wider audience. My suggestion for anyone that attends any future Virtual Abilities Expos such as this is to register as soon as you can, watch the walk-through video, and check everything out ahead of time in order to create a schedule specific to what you are looking for… and have fun!

Click HERE to see dates for upcoming Abilities Expos!

advocacy, black lives matter, Current events, Death, discrimination, Family, inequality, Life, Loss, Love, racism

I Write…

When I am hurting, or mad, or confused… I write.

When I have something important to say… I write.

When my heart is broken… I write. 

When I want to help, but I feel helpless… I write. 

I write. It is what I do. 

This time it is different. I have been sitting back and taking it all in, struggling to find the right words. I wanted to understand before I shared my words with the world, but I have realized that I will never fully understand. I have decided that I cannot just sit in the background being fearful that my words will not matter. So, it is time for me to do what I do… I write.

The driving force that has given me the courage to express my feelings, my fears, and my disappointment in my fellow human beings is my brother, Eric… my sister-in-law, Monica, and my nephew, Kobe. They are my family.

I have been blessed with a life in which the color of my skin does not cause others to assume I am lesser than, judge my actions or abilities, or bring a feeling of fear or danger… but I have witnessed it. I have witnessed my brother, who was bi-racial, struggle in a world that did not treat him fairly. From the moment I saw Eric at the adoption agency, I knew he was my brother. I did not see color. I saw a beautiful little human who gave me the title of big sister… a title I did not take lightly. Eric grew up under the same roof as me and our older brother. Eric had the same last name as me and our older brother. Eric was loved and cared for just as my brother and I were, but Eric was treated differently by the outside world simply because of the color of his skin. Many people were blinded by color and they were unwilling and unable to see the Eric I knew, that was tucked away under a hard exterior that he was forced to build for protection and self preservation.

    The Eric I knew, still at the age of 26, loved hugs from our Mom. The Eric I knew had the biggest heart. The Eric I knew was an amazing father. The Eric I knew was a hard worker. The Eric I knew hung his conference metal that he won in track over my hospital bed while I was in the ICU just so I would know he was with me. The Eric I knew loved family. The Eric I knew taught me about life, love, and acceptance. The Eric I knew would have given me the world if I needed him to. The Eric I knew made mistakes, but guess what… So have I! I feel sorry for everyone that did not get to know this Eric. 

I feel really sorry for those who had tunnel vision and all they saw of Eric was that his skin was a different color. You missed out on knowing a loving and strong human being. His life mattered to me, and his death feels like a missing piece of our family puzzle. I cannot help but to feel like I could have been better for him, or stood up for him more while he was here. So, this is why I have decided that I cannot hide back in a corner, behind my white skin, and be afraid of what others may think or feel after reading my words. I strive to do right for Eric… for Monica… for Kobe… for anyone who has to live in fear and go to battle every day because of the color of his or her skin, anyone who is unfairly misjudged, and anyone who has been directly affected by racism. I will NEVER say that I know how it feels, because I do not know. All I can do is stand in solidarity, I can listen, and I can offer my continual support in any possible way that I can.

Kobe, Eric, and Monica

I pray for George Floyd’s family, and all of the families who have gone through and are going through unexplainable losses. 

I pray for our police officers who wear their badges for the right reasons, and who are willing to give their lives for those who they do not know. 

I pray that human beings start seeing each other as human beings no matter skin color, culture, gender, or sexual orientation. 

I pray that my nephew can grow up in a world that gives him a fighting chance. 

I pray that Eric knows that I am so proud of him and that I wish I could have done so much more for him. 

I pray that people realize that nobody is going to fix this for us. It starts with each and every one of us and our responsibility to be there for one another. 

I pray that the peaceful protesters continue to be supported and that they are heard loud and clear.

Our country and our world is a mess right now.

Our country and our world has lost its morals.

I ask that you find what it is that you can do to start making a change.

I cannot fix the world, but I can try… I can write.

advocacy, Current events, disability, Home healthcare, Life, Motivation, SCI awareness, spinal cord disorder, spinal cord injury

HEROES Act…

I have not had the hiccups for 15 years… Not once! This is the absolute truth, but there is so much more to this blog than my ability to eat spicy food and drink a carbonated anything without a single hiccup.

I know… I get it… Not another write up about COVID-19. I am asking you to give this one a chance, because this one is different. So, if you are still with me… Thank you.

Right now it is common knowledge that the risk factors for catching this virus are much higher for those who are 60 years of age and over, and also for those who or immunosuppressed. Along with these risk factor groups, I want to talk about the population of people with spinal cord injuries/disabilities (SCI/D). If we look just at the United States, the estimated number of people with SCI is approximately 294,000. That is equivalent to about 54 cases per 1 million people (“Spinal Cord Injuries,” 2020).

I am passionate about the SCI/D population, because I am one of those 294,000, and I have a voice to help, to be an advocate, and to raise awareness. COVID-19 is a virus that affects the lungs, which makes it extremely dangerous for those with spinal cord injuries, especially when the level of injury is higher at the cervical level. My level of injury is diagnosed as C5 incomplete. I am not on a ventilator, and I consider myself lucky, but my specific injury has affected my body from my chest and down.

Now, to answer the question of why this makes people with SCI/D more susceptible…

I have been navigating through life in my wheelchair, without hiccupping, for 15 years. I see the lack of having to deal with hiccups as a silver lining, but it also means that I do not have the capability to cough or clear my lungs without assistance due to the partial paralysis of my diaphragm and core muscles. In order to have the full potential to breathe and cough, it takes the combined teamwork of three muscle “groups” in your body… The intercostal muscles (between ribs), the abdominal muscles, and the diaphragm which takes on most of the work. So, this inability to have full respirations or powerful and effective coughs is a major cause of immunosuppression in anyone who has a SCI/D. Some of the other causes of immunosuppression that are common complications that go along with spinal cord injuries are diabetes, urinary tract infections, and open pressure injuries. All of these provide an open invitation for viruses and bacteria to enter the body. As a C5 quadriplegic, I have dealt and still deal with some of these complications, and it by no means is a quick fix. Now I am sharing this information not only to raise awareness, but I will be the first to admit that I knew nothing about SCI/D before my diving accident. I want the level of awareness to change and I am passionate about finding ways to make that change.

 

united spinal logo

 

This brings me to the topic of how you can TAKE ACTION, and help bring change. The United Spinal Association is an amazing organization that is one of the major leaders in fighting to protect the health and safety of disabled veterans, wheelchair users, and anyone with a spinal cord injury or disorder. The support and resources they provide are extremely important during times like now, and there are various ways that you can reach out for support or get your hands on some valuable resources.

United Spinal Cord Resource Center:

(800) 962-9629

www.unitedspinal.org/ask-us/

One very simple way that you can take action is by visiting the online United Spinal Action Center and offer your support for the important provisions of the Health and Economic Recovery Omnibus Emergency Solutions Act (HEROES Act). Even though it is unlikely that this bill will pass through the Senate, it is extremely important that your Representatives and Senators are aware of the provisions that the United Spinal Association supports in future consideration of this legislation that can directly affect those with SCI/D, their families, and their caretakers.

You can visit the action center and truly help make a difference by a few simple clicks of the mouse, sharing this information with others, and offering your support in any way possible…

  1. Drop in at www.unitedspinal.org/action-center/
  2. Scroll down to COVID-19 Action Alerts
  3. Click on “Act Now” under “Support Important Provisions of the HEROES Act.”
  4. Take a few minutes to read through the six provisions that United Spinal supports, fill out your information, and click “Send Message.”
  5. Smile… because you are making a difference.

 

IMG_7295

 

Information that is found in this blog and important information related to COVID-19 and SCI/D can be found at the following locations:

 

United Spinal Association / COVID-19 Advocacy Resources & Guidance  

https://unitedspinal.org/covid-19-advocacy-resources-and-guidance/

 

Christopher & Dana Reeve Foundation / Posts in COVID-19

https://www.christopherreeve.org/blog/tags/covid-19

 

National Spinal Cord Injury Statistical Center / Spinal Cord Injury Facts and Figures at a Glance

https://www.nscisc.uab.edu/Public/Facts%20and%20Figures%202020.pdf

 

Data Source:

National Spinal Cord Injury Statistical Center. (2020). Spinal cord injury facts and figures 

      at a glance. https://www.nscisc.uab.edu/Public/Facts%20and%20Figures%202020.pdf

Current events, Entrepreneur, Family, Life, Literacy, Reading

Making A Difference 

           Ever since high school I have made it a habit to watch the news. I have always wanted to keep up on my current events, but let’s face it.. the news is depressing. It always seems to be focused on the negative of any situation. I believe it is nearly impossible to watch the news without having to hear stories of death, hatred, and war. It is the world that we live in, and there is no denying that. Every once in a while though, there is a bright spot in the news that gives us all hope that there is still good in this world. Those are the stories I love to watch, those are the stories I love to share, and those are the stories that make us reflect on ourselves and hopefully make us strive to do better and be better. I saw one of those stories the other day when I turned on the nightly news, which I do every day after work. I would like to share that story with you in hopes of brightening your day.

         Monday evening, I was watching the NBC nightly news and doing my usual routine of decompressing after work. I am a fan of the nightly news on NBC because they always end their news program with an uplifting story. That night was no different, and I found myself smiling as I was watching a story about an 11-year-old entrepreneur named Sydney Keys III. It caught my interest right away, because I remember thinking…. “I don’t think I could even spell entrepreneur when I was 11 years old!” Sydney has a love for reading, but unfortunately he realized that boys in his age group, especially African-American boys statistically stop reading. In order to fight this stereotype, Sydney created a club called Books n Bros in order to make reading more fun for boys around the ages of 8-12-years-old. “Books n Bros is not only encouraging literacy within the Black Culture and African-American literature, but also Entrepreneurship, Financial Literacy, and Endless Possibilities!”


        

        Sydney has been featured on numerous news programs and outlets. On his website you can browse through featured collections of books that all have strong African American characters and stories of African American leaders and history. So, take a break from all of the negative news, and visit Books n Bros to see how Sydney is making a difference by simply doing something that he loves. I have always held strong to the belief that we can learn so much from kids, and this is a prime example of that. Here is a shoutout to Sydney for seeing that changes needed to be made, and for taking the initiative to be that change!  

You can follow and learn more about Books n Bros at www.booksnbros.com or on Instagram at http://instagram.com/booksnbrosllc.