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.

 

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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

Autobiography, Coping, disability, Life, Love, Motivation, SCI awareness, spinal cord injury

What I Now Know

September is Spinal Cord Injury Awareness month and the Christopher & Dana Reeve Foundation has asked us to write a letter to ourselves pre-injury. Not only is it an amazing way to reflect on how far we each have come, but it also is an excellent way to share our stories and to help inspire one another. The theme is What I Now Know, and this is my letter…

Dear Annie,

I’m going to start by being brutally honest. It is not going to be easy, you are going to be scared, you are not going to even understand at first why this even happened to you. The second your feet leave the pavement and you dive into that pool like you have done hundreds of times before, you will not know that this time is different. This time it will completely turn your world upside down. It’s not going to hurt, you are not going to feel a thing, and that will be the scariest part of it all because you are not going to know anything is wrong until you try to stand up out of the water to breathe. Even almost 15 years after this night, you are not going to really understand how it happened because you never hit the bottom, and you will think of it often, and you will replay it in your head. It is a freak accident, Annie, and it is going to happen to you. It is going to affect everyone in your life that loves and cares for you, but please trust me when I say you are going to be ok… you are going to make it.

I will tell you this, and it may take quite a while for you to understand, but this freak accident is going to happen to you because you are strong enough to survive. You have a fight in you that you do not even know is there. You will wake up in a hospital bed with a body that was once yours, but now it is a body that is not going to respond or listen to anything that you want it to do. So, from that moment you open your eyes you are going to have to start all over. You are going to have to work so hard to do things that you once took advantage of and did not even have to think twice about doing.

Your first year in the wheelchair is going to be one of the most difficult and trying times of your life. You are going to feel uncomfortable when people look at you, and you are going to feel discouraged at how some people treat you. That first year will pass and you are going to start feeling more comfortable with who you are as each year goes by. Some people in your life may fade away, not because they don’t love you or they don’t care for you, but because they are not sure how to handle what happened to you. On the other hand, there will be people that stay by your side day in and day out. I want you to wrap your arms around those people, and wrap your arms around your family, because these people are your support system, your number one fans, and the ones that will pick you up when life gets heavy.

I know you had big plans for after college, and you had it all mapped out. I know how hard you worked for your degree. You will quickly learn that the only thing you can truly plan for is the unexpected. You are going to meet people and do things that you never would have if you hadn’t dove in that pool. You are going to become a strong and confident woman, and realize you have talents buried down deep that will find their way to the surface. These are talents that you do not even know you have, and you will do things that begin to help you understand why you were sent down this life’s path. Your life and your experiences are going to help others, and you have to truly believe that.

Before I end this letter, I will give you a few more important pointers….

– You will experience love and heartbreak… Being in a wheelchair does not make you immune to that, and just because you are in a wheelchair does not mean you won’t find love and a partner to take on life with.

– You have to allow yourself to feel vulnerable, or frustrated, or just plain mad, because you are human.

– Don’t give up… whether it is on life, love, or the Chicago Cubs.

– Truly and deeply hang onto the memories of things you love… like playing softball, feeling the sand between your toes, holding onto a warm cup of coffee, or dancing face-to-face with someone you love, because even though one day you may not be able to do all of these things, you will always remember how they made you feel, and nobody or nothing can take that away.

– Do it. Even if it scares you. Do it. Life is short.

– Your spinal cord injury does not define you.

This is your life Annie, and it is the only one you’ve been given. Giving up is not an option. It never has been, and it never will be. Take a deep breathe and put your seatbelt on…. it’s going to be a crazy ride. This life of yours will be a life full of love, support, happiness, and laughter with a few ups and downs.

You are strong… You are beautiful… You have a purpose, and the wheels are just how you get from one adventure to the next.

Keep on pushing forward and you are going to be just fine… I promise.

Love,

The Future You