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…
Ever since high school I have made it a habit to watch the news. I have always wanted to keep up on my current events, but let’s face it.. the news is depressing. It always seems to be focused on the negative of any situation. I believe it is nearly impossible to watch the news without having to hear stories of death, hatred, and war. It is the world that we live in, and there is no denying that. Every once in a while though, there is a bright spot in the news that gives us all hope that there is still good in this world. Those are the stories I love to watch, those are the stories I love to share, and those are the stories that make us reflect on ourselves and hopefully make us strive to do better and be better. I saw one of those stories the other day when I turned on the nightly news, which I do every day after work. I would like to share that story with you in hopes of brightening your day.
Monday evening, I was watching the NBC nightly news and doing my usual routine of decompressing after work. I am a fan of the nightly news on NBC because they always end their news program with an uplifting story. That night was no different, and I found myself smiling as I was watching a story about an 11-year-old entrepreneur named Sydney Keys III. It caught my interest right away, because I remember thinking…. “I don’t think I could even spell entrepreneur when I was 11 years old!” Sydney has a love for reading, but unfortunately he realized that boys in his age group, especially African-American boys statistically stop reading. In order to fight this stereotype, Sydney created a club called Books n Bros in order to make reading more fun for boys around the ages of 8-12-years-old. “Books n Bros is not only encouraging literacy within the Black Culture and African-American literature, but also Entrepreneurship, Financial Literacy, and Endless Possibilities!”
Sydney has been featured on numerous news programs and outlets. On his website you can browse through featured collections of books that all have strong African American characters and stories of African American leaders and history. So, take a break from all of the negative news, and visit Books n Bros to see how Sydney is making a difference by simply doing something that he loves. I have always held strong to the belief that we can learn so much from kids, and this is a prime example of that. Here is a shoutout to Sydney for seeing that changes needed to be made, and for taking the initiative to be that change!
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…
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.