Autobiography, Coping, disability, Life, Love, Motivation, SCI awareness, spinal cord injury

What I Now Know

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…

Dear Annie,

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.

Love,

The Future You

Coping, disability, Family, growing up, Life, Loss, Love, Motivation

Figure 8

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.

Coping, Death, Family

I Love You Little Brother

Summer is quickly approaching… and I, like many others, am ready for sun, shorts, and flip flops! Along with the coming of summer is also the one year anniversary of the loss of my younger brother. We lost Eric on May 9, 2016, when he was only 26 years old. It was the hardest and most devastating thing that I have ever experienced. Death is a part of life, but when death happens unexpectedly to someone so close to you and so young, it makes such a deeper impact… it takes a piece of you. Throughout Eric’s 26 short years, he had taught me so much about life… the good, the bad, and the ugly. Even though he is no longer here, he is still teaching me and I can honestly say that I can feel him smiling down. I would like to share some of the things I have learned and experienced about coping with the devastating loss of my little brother.

1. Gone but never forgotten…

Not a day goes by that I do not think of Eric. Just like it states in one of my favorite poems by E.E. Cummings, “ I carry your heart with me. I carry it in my heart. I am never without it.” Those words have so much more meaning to me since the loss of my little brother. He will always be a permanent part of me.

2. Everyone has his or her own way of coping.

Everyone has their own way of coping with anything traumatic that has happened, and I have mine. This right here… writing down my thoughts… it is extremely therapeutic, and it allows me to express my feelings and struggles in ways that may not only help me, but it may also help anyone that happens to read this.

3. It’s ok to cry…. And also to laugh…

There are days that I think about him and tears come to my eyes, but there are some days that I think of him and I smile. Most of the times these feelings come rushing in completely unexpectedly, and I am still learning how to take a deep breath and accept all these emotions. I understand now that the emotions that I feel will never change, but the way I handled them will. It will take practice and time, just like so many other things in life.

  4. It is important to keep his memory alive. 

Eric’s pictures are up in the house, we speak of him often, and we share memories and stories about him. His son, Kobe, speaks so highly of his dad, but I know over time that his memories may fade because Kobe was so young when Eric passed away. Eric’s poster of him playing basketball in high school hangs above Kobe’s bed, and I will never stop answering Kobe’s questions about his father and sharing how much Eric loved him.

5. Maybe it’s a penny… a butterfly… a mustang passing me on the highway…

I do believe he is up there watching over all of us, and I do believe that there is truth behind signs that he somehow is present. My brother loved playing jokes and he had such a good sense of humor… and last summer when I was rolling around the lake and a butterfly smashed right into my forehead, I truly felt like it was Eric. I closed my eyes, and I swear I could hear him laughing. Maybe it’s coincidence… maybe it is not…

6. Eric was “too unique” for this world.

Eric’s other half and mother of his child, Monica, stated it better than anyone ever could. She said, “Eric was an extremely unique person, and this world just could not handle him.” That has stuck with me, and I could not agree with her more. The tattoo on his arm stated the word “untamed,” and that is exactly how he lived his life. The big sister in me always worried about him, but I also highly respected his ability to not waiver from what he believed in even if it was not the popular and accepted approach.

7. Sometimes I forget he is gone, and that will never go away.

There are so many times that I see a picture of Eric, and hits me all over again that he is gone. Sometimes I feel like he has just been on a long vacation, or busy… I feel like I should just be able to call him up or shoot him a text. I’m sure this will take time, and just like an open wound, I have to give myself time to heal.

8. Always say “I love you,” and always be present.

It is as simple as that. The last words Eric and I said to each other were, “I love you.” The night before Eric passed away, the whole family was together celebrating Mother’s Day. There is no other word to describe that day besides, “perfect.” It was the first time in almost a year that the entire family was able to get together, and I am so incredibly thankful that we had that day together. It was a perfect ending for Eric… he truly loved family.

9. He is happy… He is free…

It is hard too describe the feeling that swept over me as we scattered Eric’s ashes at the lake. The best way to describe it was that I felt at peace. I knew he was finally laid to rest at his absolute favorite place. I feel close to him when I sit at the edge of the dock and look out over the water, and when I miss him that is where I want to be… that is where I feel him the most.

10. I am a big sister, and I will always be a big sister because of Eric.

I am many things…. A daughter, an aunt, a granddaughter… but I loved being a big sister. From the day I walked into the nursery at the adoption agency and I met my little brother for the first time, I was so proud. I remember beaming from ear to ear when Mom brought him in to my second grade classroom because I wanted him to be my “show and tell” for that week. I will always have those memories, and I will be forever grateful for the 26 years I had with him.

Rest in peace little brother… I love you…. 💚