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!
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.
Now, I know everyone has his or her place they go to get away, to find some peace and quiet, and to have just a little time to be away from everyone and everything. It may be a big cozy chair in the corner of a room where the sun shines in with a good book in your hands, a park bench that is off the beaten path, a little coffee shop on the corner, in your car driving through the country with the top down, riding a bike through those beautiful tree tunnels that make you feel like there is a completely different world waiting for you at the other end, going to the batting cages until you have used every last available quarter you can find in a 20 mile radius, floating on kayak at dusk when the water is like glass, sitting in the sand letting all your senses take in everything that the ocean can give, or laying in a hammock while the breeze rocks you to sleep. These all were my getaways before the wheelchair. My spot now… my momentary timeout from life is rolling down the road in big figure 8 around this beautiful lake that I call home. On a day when I need a little extra time, when things are weighing on my mind, or I want to escape and listen to a few more songs and my charge on the chair is still on green, I buzz right by our driveway and go twice. Everyone around here knows this as my “roll,” and I have met so many people over the years just by waving and saying hello. As long as the sun is shining and the weather permits, it is a daily event for me. I make sure my seatbelt is secure, I hook my mirror up so I do not have any surprises sneaking up behind me, I put my chair up to rabbit speed, the headphones go on, and the music goes up. The sun, the wind, the water, and the music relax me and somehow ignite my creativity all at the same time. It is on my rolls where I come up with the best ideas for writing, and it is also my place where I try to let go of worries, cry over the loss of people I love, smile at random memories that my music brings back to life, vent my frustrations, talk to my little brother whose presence I feel every moment I am by that water, sing my heart out along with the music flowing in my ears, and cope with things that I do not like to speak of. I have had a few people ask me if I get bored of rolling and seeing the same sights every day, and the first time I responded to that I remember exactly what I said….. “It is so pretty here, and I see a different kind of pretty every day.” Every day I roll around the lakes, no matter what kind of day I have had, I can honestly say that I see at least one thing that makes me stop and just look. Today was no different, and it was a day where I had all sorts of thoughts bouncing off of each other while I navigated my figure 8. This is what my roll stirred up…
I once heard the saying, “If you are lucky enough to live on a lake, then you are lucky enough.” As I sit here on the dock and look out at the water as the sun is going down I really do know how lucky I am. For many of you that know me, you know that my permanent home is now on the lake, and a beautiful lake at that. Now, if I had to make this change five or so years ago, I know I would not have appreciated it as much as I do now. I would not have been ready to leave my friends, leave my home and everything that was familiar to me, leave the faster pace of life. Now that I’m in my “northern” 30s my mindset is completely different, and I have realized how much can change over just a few years. I know what has brought this change in me; it is a combination of things…
First is that I fell in love. A strong love. An honest love. I could feel my priorities in life completely shift when love showed up like it did… unexpected but at the perfect time. The lakes allowed me to be closer to that love, and that love washed away any doubts that were lingering about moving away from what was familiar to me. Love is a powerful thing and it made me feel safe. The second is pretty simple… I grew up. I have developed amazing friendships that have an unspoken mutual understanding that being an adult is not for sissies and life sometimes can keep us apart for a significant amount of time, but we truly cherish every moment that we now have together. Yes, I miss them every day, but at this age I have been blessed with such a solid foundation of true friends… friends that are constant no matter what life deals out. Third, I enjoy the slower pace of life here, and every single time I say it I shake my head and smile, because I hear my 70 year old neighbor say the same exact thing. I love the little bar on the corner where “everyone knows your name,” knowing that I can look up at night and see so many stars that are not faded by the lights of a busy city, having friends visit so they can relax, living near a one stop light town that still celebrates its settlement days with a beer tent and live music, cooking dessert over a campfire, and losing track of time with friends out on the water. The last significant piece to all of this is my little brother. He continues to teach me things about life, even after he passed away a little over two years ago. This lake is his final resting place, and the feeling of being close to him makes me feel more at home than anything else. It has brought a new calmness to this beautiful body of water that I wake up to every morning. It is a calm that I did not feel before, but it is real and I know Eric would want that for me… he would want that for all of us.
I have come to realize that it is the people, the love, your frame of mind, it is life, it is loss, and it is the experiences… however large or small that make a house your home, and each spot where we land is like a stepping stone through life. The stone I am on right now is a good one and the view is not too shabby. So, for right now I’m going to keep rolling my figure 8, and waving at people that I have yet to meet, and singing along with my music, and writing about my life… and always trying to find that “different kind of pretty” every single day.
When I was a little girl, I had my life all planned out. I was going to be a monkey trainer, married, two kids, and riding horses in the mountains with the gobs and gobs of free time I would have because my personal cook would have dinner ready every evening, and my responsible children would finish their homework every day without being asked, and they would have a weird obsession of picking up after every mess they made.
It did not work out that way… At all. What can I say? This flashback to my little girl dreams getting crushed, brings me to my next topic…. “Life goes on.”
“Life goes on…..” You know, it was a phrase that I never really liked. Yes, it is the truth, but it seems so insincere, so blunt, and so lacking of any emotion or empathy. Now, at the ripe age of 35, I am sitting here in my wheelchair, at the end of the dock, writing down my thoughts, looking across a gorgeous lake, and watching “life go on.” I have come to accept that phrase.
I am not heartbroken about those dreams I had as a little girl not working out. There have been many points throughout my life where I thought I had it all planned out, but the forces that be shook their heads and thought otherwise. Every single time my plans completely got thrown into the blender in regards to how I thought my life was supposed to be, there was always one thing that was guaranteed… Life goes on.
There are so many things that can turn your world upside down. Whether it is the death of someone you love, a traumatic event, a broken heart… Life does not stop and wait for you to catch your breath. The sun still rises and sets, deadlines do not disappear, bills arrive just on schedule, traffic still piles up at rush hour, and you come in contact with strangers who are completely unaware of the pain you carry inside. At times it does not seem fair that the world keeps going with complete disregard to your own feelings of loss and defeat, but maybe that is what helps us heal. Think about it, if life stopped every single time you faced a detour, it would be kind of like trying to watch a YouTube video with really slow Internet. We all know how annoying that is… Nobody likes “buffering.”
Maybe you just need to coast on that detour, just for a little bit. I have learned to look at the detours of life from the perspective of relating them to real “detours.” Yes, some detours absolutely throw you for a loop, and get you so lost that you have to use every lifeline necessary to find your way. Sometimes though, there are detours that may in fact make it a longer ride to reach that final destination, but if you truly open your eyes, that ride is more beautiful, and it would have been something that you never would have experienced otherwise. It may be a blessing in disguise, it may scare the crap out of you, it may open doors to amazing opportunities, it may shut doors that you never thought would close, you may meet the love of your life, you may lose the love of your life, but it is life, and it is yours, and it is unpredictable.
I by no means claim that I have it all figured out. So, until it is my turn to see the ones I have lost throughout this journey of life again, I will put my seatbelt on every morning and keep rolling with life as it “goes on,” doing my best to embrace the detours and wherever they lead me to, and holding on to the belief that hearts that are meant to be together will always find their way.
Also, monkey training is never out of the picture…
As many of you know, I am a children’s book author, but I have always wanted to write a book about my story. I have worked on this on and off for about four or five years now, and it is nowhere near completion. It is a project that I work on when the writer’s block fog dissipates and ideas come rolling in. It may take four or five more years to complete it, but I enjoy putting my story down on a piece of paper. It challenges me to find a way to truly describe all the emotions, experiences, and challenges since I dove into that pool almost 12 years ago.
Below is an excerpt from the beginning of my book. My whole goal for this section is to help the reader, whether they know me or they are a complete stranger, picture those hours before my accident. I can play the events of that day over and over in my mind with such vivid images, and I want the reader to also be able to be there with me. So, I would love for you to take a few minutes to read through these few paragraphs. Your input, comments, and ideas are what can help me make my story so much better. Sharing my story is very therapeutic, but in the end I am writing this for you.
CHAPTER 1 – GO BACK WITH ME
It’s still so hard to go back, but I go there often. I have learned that it is impossible to erase the memory of a split second in my past that had the power to change my entire future. The thoughts, the feelings, the “whys,” and the “what ifs” are a constant battle. It is a battle, that at times is numbingly overwhelming, but it is also a battle that I passionately feel I can beat. I want to share my story about the past 12 years of my life… not for sympathy, but for the simple fact that I know there are others that sit where I sit. This is the one life that was given to me, so I am going to fight for it. So, go back with me to that day where I had to learn how to live all over again.
May 7, 2005
Let me introduce myself. I am not famous and I am not a hero. I am a twenty something young woman who is just hours away from graduating college with a fresh Interior Design degree and a new job at a design firm with a promising future. I am to start my new career in two days as a Project Designer. After five years of pop quizzes, pulling all nighters, cramming for tests, and presentations, I am excited to start this new phase of my life that I have worked so hard to reach. No more homework and finals. I am going to finally have the opportunity to put my talents and abilities to use for others.
It is hot day today, even in the morning, as I am driving in my convertible to meet my friend Darcy I can feel the stickiness of the Indiana summer heat. The top is down, but even the breeze rushing over the windshield can not cool the black leather seats from the blistering sun. As I arrive at her house near campus and walk inside carrying my cap and gown, everyone is running around franticly trying to adjust their graduation caps just right, fix their make-up, and figure out who is riding with whom. I feel a little under dressed as I look down at my favorite flip flops I decided to wear. Then I notice the bright red nail polish on my toes, and as I am wiggling my toes and admiring their shine, Darcy wraps her arm around my neck for a quick picture before we head out the door. We all stuff ourselves into a couple cars and head to the North Quad on campus, where the ceremonies will begin in less then two hours.
As we walk to our designated spots near the Quad in the center of campus, there is a sea of black caps and gowns with a splash of red tassels. Darcy and I hug, then I make my way over to my group of Interior Design friends that I have worked side by side with for the past four years. We snap pictures and talk about if we have found a job, have a job, or even want a job. It feels so rewarding to talk about my new position I was hired into after a semester of rush hour commuting, hard work, and dedication as a design intern. My new job as a Project Designer will entail me to work with clients who trust me to take what they are picturing in their head, lay it out in a series of sketches, plans, and presentation boards, and finally make it real after hours upon hours of meetings, deadlines, phone calls, and presentations. It is going to be stressful at times and long hours, but I love it and I am good at it. I am so eager to begin this new phase of my life. In the midst of all the excitement and chatter, the time finally arrives where we are asked to line up in preparation to walk to our seats. The feeling of the sun beating down on my black gown is already making my skin tingle, but there could not be a more beautiful day for an outdoor graduation ceremony.
After the commencement speeches and the acknowledgement of the graduates, we split up again to head to our different locations on campus to receive our diplomas. Before we sit down for this final ceremony, I scan the growing crowd trying to spot my family and best friend, Stacy. It means so much to have them here, and it makes everything sink in and feel so real. In about an hour, I am going to turn from a “college student” to an “adult.” I cannot tell if that thought is causing the instant rise in temperature in my body, or if it is my gown and the stiff hot air.
The final ceremony is a blur in my mind. I remember hearing my name and walking across the stage to receive my diploma, then flashing a smile at my family as I make my way back to my seat. As the other graduates take their turn and the speeches are being made, I cannot help but unzip my gown to release some heat. The rush of cool air feels so refreshing on my skin, and my idea must have caught on because the spuratic sound of zippers can be heard through the rest of the ceremony. As everything comes to a close, I am more than ready to celebrate with my family and friends. I am a college graduate, and I have a little under two days to let this sink in before I start my life working in the real world.
Mom and Dad join me at my favorite restaurant on campus for lunch before I head back to my apartment to get ready to meet up with friends. The restaurant is packed with beaming college graduates and family members. It is a typical college pub with glowing neon signs, and beer taps as far as you can see. I have frequented here quite often through my college years. I had grown fond of the college atmosphere, and deep down I know I am going to miss the spontaneous dinner dates with friends, the late nights out, the weekends starting on Thursday afternoon, and the hot dog man at three in the morning. Little do I know there is a surprise party back at my apartment that Stacy has put together. I finish eating with my mom and dad, and make my way back to meet Stacy. I am flying high and so happy, but clueless to the apartment full of friends. As I open the door, I am welcomed by hugs and congratulations, and I am so excited Stacy did this for me. She is a true best friend that I will forever be thankful for. I am ready to have a great time with my friends and celebrate my survival of college.
Throughout the evening friends are coming and going. My apartment has a pool, so of course the idea of going for a swim comes up later in the evening with a small group of friends. I make up my mind to join them, so we all walk down to the pool. The pool is shallow and I am well aware of it, and even tell others it is. I stand at the edge and dip my toes in, while talking with my friends. The water feels cool compared to the air, but I was always one to jump in and not torture myself with the slow agonizing walk into the water where goosebumps slowly travel up your body. This time is no different than any other except for the end result. My feet lightly push from the cement and I do a shallow dive, where my body barely skims under the water. The split second the water rushes over my head, something feels different…
I have spoken to many groups ranging from kindergartners to adults about my journey over the past 12 years of being in this wheelchair. Sharing my story and my experiences is something I truly love to do. Over the years of talking to so many different groups, I have learned that no matter what the age is that I’m speaking to, I get asked some of the same questions. One of those questions that I love to answer is, “Annie, if you regained all your movement and strength, what would you want to do first?” It is so hard for me to just pick one thing, so I will break it down into my top five.
1. SOFTBALL! I would grab my batting gloves and my favorite bat, and I would go to the batting cage and hit softballs until I couldn’t lift my arms anymore. I love softball! I played four years of varsity softball in high school, and after high school I played as much as I could fit into my schedule. The sound of hitting that softball just right… in that “sweet” spot… It is a sound that I will never forget, and it is a feeling I miss so much!
2. DANCE! I am by no means a good dancer. Actually, I’m awful at it… but I do remember how great it feels to just lose yourself on the dance floor. Now don’t get me wrong, I still can do a pretty wicked shoulder shimmy, but it just does not compare to dancing the night away.
3. COOK! I’m Italian, so cooking is an inherited trait that has been passed down through my family. Cooking was something I used to do all the time before my accident, and it was also something that I never thought I would miss. Whether it is cooking for myself, or surprising the one I love with a big plate of homemade spaghetti… I miss it!
4. RUN! Yes, you read that correctly…. I said, “RUN!” Back in the day I was never a distance runner, but if there is one important lesson I have learned with being confined to a wheelchair, it is…. “Where there is a will, there is away.” So, you can bet that I would work at it… and I would run… and run… and run.
5. PLAY CATCH! It could be a football, a softball, a frisbee… I’m not picky. I love the feeling of throwing the perfect spiral with a football, the “smack” of a softball being caught in a leather glove, or seeing a frisbee glide through the air. It is so simple, but so satisfying.
So, that is my list. As I was writing it, I realized that every single one was something I took for granted. I never thought that the last time I did each of them that it would actually be my last time. I do not think many people look at the “simple” things in life that way. That is one of the most important reasons why I love sharing my story… I want to help you to embrace the little things. I am a true example of the saying, “You will not miss it until it is gone.” So, never forget what is important… never forget that life throws curveballs… never forget how very precious life is… and never forget that you get this one chance at life. So, hit the ball, shake your booty, embrace your inner chef, run the marathon, and celebrate that perfect spiral.