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!
No, it is not how many years my parents have been married.
No, it is not my lucky number.
Yes, it is the number of job applications I have filled out over a period of two months.
October is National Disability Employment Awareness Month (NDEAM), and I wanted to share some of my employment journey experiences in order to raise awareness and help others see that there is a light at the end of the tunnel for those of us with a disability to find employment. I just recently started my position at the United Spinal Association as the Grassroots Advocacy Manager. It is a perfect fit for me. It is something I am passionate about. I get to work from my fully accessible home office, and I feel like I am truly helping others and making a difference. I strongly believe that this opportunity was presented to me due to the culmination of many factors.
Working at United Spinal was not even in my radar a year ago as I was clicking my way through multiple job sites, writing cover letters, tweaking my resume, and doing everything I could to get it past that first step and actually into the hands of an employer. I used career counseling, job placement companies, networking, and career services through my college. I was struggling with finding employment not because I did not have the proper education, work ethic, or skills. I was struggling because I am a C5 quadriplegic and at the time of my search for employment, working from home was considered to be a burden for many companies.
I know it is a difficult task for anyone to find and get hired into his or her desired career, because I have experienced the process pre- and post-wheelchair. Both are challenging, stressful, frustrating, but in the end hopefully rewarding. I quickly learned that as a C5 quadriplegic, I had a few more hurdles to jump over despite the fact that my education and work experience qualifications did not change. Besides finding a career that was a good fit, I had to now consider transportation, nursing for any of my needs throughout the day, accessibility in regards to equipment for work, assistance with typical duties, avoiding health issues such as pressure sores from sitting in one position for an entire work day, all the way down to who would help me eat my lunch! The best option for me was part-time remote work from my home office.
After starting my work at United Spinal Association, I quickly found out about all of the incredible resources that are available for those with disabilities who are seeking employment. United Spinal’s Pathways to Employment (PTE) offers webinars, podcasts, various resources specific to people with spinal cord injuries and disorders (SCI/D), and a video series that covers various aspects of finding and landing a job that is a great fit for you. The Pathways to Employment program also provides guidance for employers in order to ensure that people with disabilities are properly represented in their workforce.
Another key resource is the Office of Disability Employment Policy (ODEP) where you can find employment assistance and resources. There you can also find the link to the Campaign for Disability Employment titled What can YOU do? This initiative highlights what people with disabilities can do if they are simply given the opportunity. The “Working Works” PSA Campaign is part of this initiative, and United Spinal Association is represented in that PSA by one of our own members, Chanelle Wimbish of Maryland..
The United Spinal family is a community that is truly passionate about helping those with disabilities find employment or return to work after an injury or illness. This is a community that has given me the opportunity to work in a field that I am truly passionate about. This is a community that I am extremely proud to have joined. I want those with a disability to know that there are opportunities out there for you to meaningfully use your talents and skills. I was offered my position at United Spinal by sticking to what I am passionate about… writing, speaking, and being a voice for those who do not have one. If you continue to use all the resources available to you, continue networking, continue working hard, and continue believing in yourself and everything you are capable of, you will find those opportunities. This world is starting to understand the importance of hiring people with disabilities, the skills we bring to the table, and the unique insight we can provide to improve outreach and accessibility to the working world.
That is the light at the end of the tunnel for me, and as we all keep pushing forward that light will continue to get brighter.
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.
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…