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.
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.
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!
It’s kind of ironic because that exact question is one of the most popular, but coming in at a close second…
How fast does your chair go?
The question I want to talk about today is…
What does it feel like?
My official diagnosis is that I am an incomplete C5 quadriplegic. An incomplete spinal cord injury means that the ability of the spinal cord to send messages from the brain is not completely lost. This is compared to a complete spinal cord injury, where there is no function at all below the level of injury. Now knowing this, it is important for me to tell you that how my body functions, and what I feel can be completely different from somebody else who has the same level of injury as I do. That is the thing about spinal cord injuries. Each one is so different, and the amount of return after the injury varies for each person.
I know, there is a lot going on in this picture. This is not one of those popular “leg” photos that people always seem to take by a body of water. Well, it is… but for a different reason. I wanted you all to see it because this is my view. There is a beautiful lake, because I am sitting at my favorite spot at the end of our dock which is where I do quite a bit of my writing. I have my favorite sandals and some bright pink toenails. Please do not let those pink toenails or pink shorts fool you though… I love fishing, football, and I do not mind getting my hands dirty. There also layers upon layers of scars. Each scar has its own story, and some of my favorite include softball wins and stolen bases.
Here they are… these legs of mine. They look like they should work, right!?
After 15 years of being in this wheelchair, I can honestly say that every day, at least once a day I still look down at these legs and think to myself, “Man… you really look like you should work…” This thought goes through my head because, these legs of mine look like they always have. Yeah, they are a little smaller due to some muscle atrophy, but besides that, I often feel like I should be able to hop out of this chair and go for a walk. I am not sure if that thought will ever go away, because spinal cord injuries are just really confusing and hard to understand, and sometimes even harder to grasp… Even after 15 years.
So, I will do my best to answer the question, “What does it feel like?”
Many times people think that I can not feel anything at all. Others may not realize that I have even lost feeling below my injury. Listen, it is OK. I will be the first to admit that I knew nothing about spinal cord injuries until I actually had one.
With my level of injury, I have complete feeling and sensation from my chest/mid-bicep and up. I have complete movement of my shoulders and biceps. My triceps are stubborn and kick in on a good day. For me, this is a blessing, because I still have the ability to hug, to hold babies, to wave, to pet puppies, and to use a headlock when needed. It is a collection of little things that add up to a whole bunch… especially when they are things I was very close to losing the ability to do in a split second. They are all things that I used to be able to do without thinking twice about it.
Now, all the complicated stuff is the rest of my body below that level. Internally, I can feel almost everything… every muscle spasm, muscle cramp, nerve pain, and these strange zings that shoot down my legs when someone scares the crap out of me. Weird, right? Externally it is a completely different story. The best way to describe it is, if someone would come up and pinch my leg I would be able to tell you where that person pinched me, but I would not feel the pain of the pinch. Granted, my leg might involuntarily jump and kick that person in the shin, because that is how my body reacts to any pain below my chest, and let’s be real here… that person deserves it! The same goes for my sensation of feeling anything hot or cold on my skin. There has been a number of instances where I have looked down at my arms or hands and I have a burn blister, and I was clueless because I did not feel it at all. So, plates at Mexican restaurants are my nemesis… Those suckers are en fuego!
Here is the crazy thing… my nerves are all connected still. This means that anytime I attempt to move a body part such as my toe, I feel every signal down to the tip of that toe. Actually, if I close my eyes and try to move my toe, I would bet you money that it is moving. That goes for any part of my body below my level of injury that is paralyzed. I can try and try until I am blue in the face, which I have done before. So, even though I feel every signal going down, I just can not get those muscles to fire. A spinal cord injury is similar to the broken electrical cord that is pictured below. You can do everything humanly possible to jam that cord back together, but all the internal wires will not connect. You may get lucky and some of those wires will find a pathway, and you may have some return.
My mom simply says that I am “wired” funny, and you know… I really can’t argue with her.
I know explaining what I feel may somewhat answer your questions, but I also am very aware that it does not fully demonstrate my specific experiences. So, I have found something that you can do as a way of somewhat feeling what I feel. I can not remember where I found this or who came up with it, but kudos to whoever you are! Check out the picture below to help, but before you do I am putting a disclaimer that at first glance it will look like I am flipping you off… I am not!
All I need you to do is to make a fist then put your fist down on the table… Palm side down. Next, I want you to put your ring finger out straight, so it is the only finger sticking out and it should be touching the table also. Now, without lifting your hand off the table I want you to try and lift that ring finger up off the table… without moving anything else except that finger. I bet you can feel every signal going down to the tip of the finger, and some of you may even get it to twitch or wiggle a little, but it refuses to do what your brain is telling it to do.
You can grunt. You can cuss. You can hold your breath and squeeze your eyes shut. You can stare at it trying to will it to move. You can turn 100 shades of red on your face. It just will not budge.
That is it. That is what I feel.
Oh, and by the way, to answer that other popular question… 6 mph. My wheelchair tops out at 6 mph. It does not sound fast, but trust me… 6 mph down the aisles at a grocery store is fast.
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.
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.
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…
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…
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.