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.
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.
For the past 12 years I have relied on the help of home health nurses, and home health aides to start my day. The mornings of simply rolling out of bed, and throwing on some comfy clothes have gone by the wayside. My mornings now begin with a specific routine that takes up to the span of three hours. My nurse comes every morning and assists me with getting up, showering, stretching, getting dressed, and getting situated in my wheelchair for the day. I have been with various home health agencies, and I have had many nurses over the time that I have been in my chair. I have a current nurse that has been with me for close to four years, and we have our routine. We have spent many hours together, and she has become a very important part of my life, and I know I am one of the lucky few that has been blessed with nurses that truly care for me.
I feel that I am in a position that allows me to be the voice for those in my similar situation that do not have the same support system as I do. I am currently with my fourth home health agency, and I am completely aware of the decline of home health care in Indiana. It is by no means the fault of the clients that require care at home, I truly believe the fault lies within the home healthcare agencies themselves. I was with an agency for 10 years, and I was released because the agency stated that they did not have enough nurses to cover my hours. Since I was released from that company almost a year ago, I have contacted a nearly 14 page list of home health care nursing agencies, and I received the same answer almost every time…. “We currently do not have enough nurses to take on any more clients at this time.” I fortunately have a nurse that has stuck by my side and she has hired on to every company that I have been forced to skip around to.
Recently, there was an article written by Suzette Hackney in the Indianapolis Star about a woman by the name of Karen Vaughn that hit very close to home with me, and I am sure with many other people in similar situations. Karen is a quadriplegic and a disabilities advocate. She relies fully on constant skilled nursing (20.5 hours every day) because she has no movement below her neck, and she breathes with the aide of a ventilator at night. Vaughn was hospitalized for pneumonia, but when it was time for her to return to her apartment she could not because the home health agency that had been providing her around the clock care would not take her back on because they did have enough staff or nurses. As a result, Vaughn had to stay at IU Health Methodist Hospital. The cost per day was $2,200. After her 11 month stay at the hospital, she had no choice but to go to a nursing home. Not only has Vaughn’s mental state been negatively affected by the stress of being in a nursing home, the level of care that she receives has diminished compared to the care she received at her own home. For Karen, there are so many things at stake along with her health and mental state. She is at risk of losing her apartment, she is at risk of losing the small amount of independence that she still has… she is at risk of losing so many things that others take for granted.
Vaughn is just one of the many who are in this unfortunate situation. It is a problem that is becoming all to familiar, but it somehow continues to be overlooked. This is also a problem that is not going to go away anytime soon. Along with the many people who have disabilities that require home health care, we are a country full of baby boomers and wounded veterans that will need care. The demand is rising, and it is rising at a rapid rate. The number of people that require home health care just in the state of Indiana has gone up 60% over the past three years. There are nurses out there, and I know this because I have been dealing with home health agencies for almost 12 years now. I also know, that a majority of home health nurses are being overworked and not compensated for it. Maybe one of the first steps begins with these agencies taking care of their nurses with better pay, better benefits, better organization, better incentives. At times, acknowledgement and a sincere “thank you” to a nurse that has given up his or her personal time with his or her family to pick up a shift or help a client can mean so much. Although, I know there is no amount of “thank you’s” that I can extend to my nurses that even comes close to showing the level of appreciation for the sacrifices and care they have given me.
Something has to change, and creating awareness can be the beginning of that change.
I am a hard-working and determined 34-year-old woman just trying to live life like everyone else. I will not pass up any opportunity to be an advocate for those with disabilities, or to be an advocate for anything I wholeheartedly support. Everyone has a purpose… and I truly believe this is mine.
Top 30 Cities for Home Health and Personal Care Aides (Website)
1 Milwaukee, WI
2 Waterbury, CT
3 Peabody, MA
4 Duluth, MN-WI
5 Rochester, MN
6 Minneapolis-St.Paul, MN
7 New Bedford, MA
8 St. Cloud. MN
9 Tacoma, WA
10 Fargo, ND-MN
11 Columbus, OH
12 Poughkeepsie-Newburgh, NY
13 Albany-Schenectady-Troy, NY
14 Ithaca, NY
15 Worcester, MA-CT
16 Rochester, NY
17 Grand Forks, ND-MN
18 Mankato-North Mankato, MN
19 Barnstable Town, MA
20 Monroe, MI
21 Pittsfield, MA
22 Racine, WI
23 Tucson, AZ
24 Nassau-Suffolk, NY
25 Kalamazoo-Portage, MI
26 Boston, MA
27 Providence-Fall River, RI-MA
28 New Haven, CT
29 Lancaster, PA
30 Chicago, IL
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.