I was so touched by a reader’s e-mail last week, I’ve asked her if I can share it. This young woman is such a brilliant example of confidence and tenacity, and she’s brought such beautiful clarity to some of my own challenges. I hope she inspires you too.
My name is Sarah and I am one of your mystery readers. I feel like I am in AA and making a confession. I stumbled on your blog after receiving a link to another blog from a friend. Your blog was listed on the side under “blogs I read”. I was quickly drawn to the title and started reading. Little did I know, I would be reading your blog over the next several weeks, searching for every undiscovered, unread post. I immersed myself in your life, holding on to every word and every picture. I would sit for hours just reading and sobbing. Sobbing sometimes because of the sadness, but mostly because of the joy you exude in the most difficult situations. You take darkness and turn it into light.
Twelve years ago, when I was just twenty one years old, I was involved in a horseback riding accident that left me paralyzed from the waist down. Immediately, my life changed and everyone around me changed. Nothing was the same anymore and I was faced with not only the cluelessness of my twenties, but the overwhelmingly difficult challenge of doing this while newly paralyzed. After waking up in the ICU and learning my fate, I decided I would jump in with fervor and gusto. I was going to be the toughest, strongest, coolest paraplegic there ever was. I powered through therapy and insisted on covering my enormous back brace with chic pieces like a sweater around the neck or a scarf. I returned to college, after only missing a semester to recover. I was living as if I was going to beat the prognosis. As time went on, I learned this idea was not going to work. I began to have a tremendous amount of difficulty with the insurance company and obtaining what I needed, wheeling across a college campus seemed like so much work and took so much time. I started getting sick more and more often and was spending more and more time alone in my dorm room. I didn’t want to go places because I didn’t want people to see my wheelchair. I would have people over and insist I had to stay in bed just so I didn’t have to sit in the chair. I was losing and changing friends so rapidly because I had no idea who I was and anger and resentment were taking permanent residence in my mind.
I left Miami University, started a new job, and moved in with a high school friend. I continued to have higher and higher fevers every single day. I was vomiting every day, sometimes three or four times a day. I was trying to do my job as a tutor for children with autism and give them my presence and devotion and the attention they deserved, but I was slowly slipping away. My health problems increased and so did my insurance problems. My wheelchair was repossessed because of my insurance company’s failure to make payment! The issues went on and on and I fell deeper and darker into depression.
The doctors finally discovered that I was carrying a blood infection for at least nine years. I had to fight a number of doctors until I found one that actually felt there was something huge going on and didn’t dismiss my symptoms as just a UTI or a stomach bug. I had three years of treatments, of various kinds, to heal this infection.
I am now recovering rapidly and look forward to a future. Last year, when I discovered your blog, I was having a particularly difficult time in my life. I was terrified about moving forward, wasn’t all the way healed, and was just generally frightened about life. When I started reading your words, reading the fear you have, seeing how you keep going despite wanting to shut down, and feeling the positive energy that exudes from your blog, I started believing that I may have the life I’ve always wanted after all. Your honesty about wanting to hide the disability spoke volumes to me. I was always trying to live in spite of my injury instead of embracing it and living with it. I wanted to hide from everyone. I check your blog constantly because a simple picture of your girls or a story of a moment you’ve had, good or bad, can make my day seem bearable or better. Your stories, love of life, parties, simplicity, courage to just be present are all addicting. I want to create the feeling that comes through your blog in my life.
I, like you, always had a baby on my hip or kids in my life. I was the super nanny of my neighborhood and babysat all through high school and college until my accident. I can not wait to have a husband and babies. I can taste it, it is so real for me. I began thinking my dream life wasn’t possible because I couldn’t picture myself caring for my children they way I babysat. Water parks, ocean visits, hikes, and even playgrounds seemed impossible. I thought my children would be the unluckiest children and wish their mom could do something besides play scrabble. But then I found your blog. I see that Nella’s life is Nella’s life. Whatever modifications or changes have to be made, in comparison to Laney’s life, are made seamlessly. No one is suffering from a lack of anything. A disability does not mean dreams are over or are even comprimised. Working hard and making life what we want it to be is what we all have to do. Nella and I may have to work a bit harder, but we will still can have the life we desire.
Thank you for inspiring me to live the life I want and for making it look possible. I am plowing full steam ahead to grab what I want and to quote someone I admire, “suck the marrow out of life.”
Some people like to tell me that my injury, my paralysis, my illness, they are all a part of a plan, particularly God’s plan. That everything in my life has a reason and only He knows why. Well, I tend to find that a ridiculous thing to say. I find it very difficult to believe that hurt, pain, rape, murder, disability, war, and many other awful things are all a part of a plan. As far as I know and understand, God is love. Whenever love is present, so is God. God is inside of us all. When our hearts expand and more love blossoms, we are finding and experiencing God. When something tragic happens instead of being a part of a master plan, I believe it is just one more way we can expand our hearts. We are all a part of the human experience and with this experience comes many, many things we can not control…some good and some bad. Instead of analyzing them and figuring out why they occur, we would be much better off expanding our hearts and realizing all of the other people who share similar circumstances. We would be better off being a little bit easier on people we are frustrated with because who knows what he or she is going through or has been through. We must become more gentle and less tough. You have mastered this idea of opening your heart and sharing love.
Every child has known God-Not the God of names-Not the God of don’ts-Not the God who never does anything weird-But the God who knows only four words and keeps repeating them, saying: “Come Dance with Me.” Hafiz
Our life is a dance and we are the choreographers. You have taught me this through your blog and book and I am forever grateful. Because of you, I am starting my own blog to try to reach out to people who are suffering and in a similar condition or situation to mine. I hope it helps everyone, but want to focus on the disabled. A friend’s son jumped into a pool and is now paralyzed. He is at the beginning of the journey and I want to help him with my honesty, just as you have helped me with yours. If I reach out to only one person, it is worth it. I also need a place to tell these ridicouls stories that have happened throughout this journey! Please know I think of you often and am touched by your words constantly.
You can read more from Sarah’s new blog, Sarah Sitting Down.
Sarah, thank you so much for sharing your story.
I’ll be back tomorrow with a regular post and the Mark Poulin giveaway winner.