I Give Up – The lie.
“I Give Up” — every person has thought this at some point in their life. Life has challenges, and everyone hates not being able to see the light in the darkest of days. “I give up” is so much easier than “I can do this.” I have had people ask me how I can be so happy and smile all the time. I tell them why not? They ask how I can live on my own. I tell them why not? I never gave up on independence… even when my mother asked if I wanted to live in an assisted living. Sure, that would be easier, but I wouldn’t be happy.
My mother and father could have let me die. They could have taken the doctor’s advice and let infection set in and let me die. This is one of the reasons why I can’t give up. My parents believed that their oldest daughter would be someone. They taught me how to be independent, how to speak up for myself (that one took a while to learn), how to just be a decent person.
I was born with Spina Bifida. Spina Bifida literally means “split spine”. It’s a defect where the backbone and the membranes around the spinal cord don’t close all the way. Most commonly the location is in the lower back. Depending on the severity, some don’t even know they have it until they’re much older (for example, Hank Williams, Sr.)
Spina Bifida isn’t who I am… that’s like someone with a severe peanut allergy isn’t who they are. They can’t have peanuts, I can’t walk. That’s it. We adapt to our surroundings and get by with what we can’t have. In all honesty, I don’t care that I can’t walk. I never knew how, so I can’t miss something I never had. My favorite thing is when people ask me how it is to not walk and I say “Like normal.”
I credit a lot to my parents. I wasn’t something they thought would break if I went outside to be a kid. They taught me I could do everything…. Besides walk… but walking is so overrated. I can play basketball, play in the sandbox, and swim better than my siblings. I grew up in northern Wisconsin where there’s snow for 8 months of the year, so my father taught me how to downhill ski in an adapted ski. My father took me fishing, kayaking, camping just like he took my brothers. I did more than my siblings did. I think because my parents didn’t know if I would make it to young adulthood.
I did, and all that my parents have done for me has taught me that giving up would make their work in teaching me how to be an adult pointless. There have been plenty of lows and many more high points in my life. I’ve seen a few too many days in the hospital. It’s been over ten years since I last had to stay for an extended period of time and for that I am grateful. During that hospital stay, my great grandfather visited and he said to me, “You are 12 years old; that is only one-eighth of your lifetime. You have plenty more years to live. So you can never give up.”
I think I got lucky in my school years. I never felt bullied. I never had someone make fun of me because I was in a wheelchair. I’m sure that people made fun of me without me hearing, but I never cared enough to think about it. Looking back, I know I was excluded from parties and some “friends” just tolerated me. I only talk to one or two people from my high school still, and a few more from my elementary school days.
I was a smart child (I’m not bragging, it’s true. I was answering high school test questions in 2nd grade). In 1997, 7 years after the Americans with Disabilities Act was passed, my elementary school did everything to make sure I was just a kindergartener. By fifth grade, I was talking to the kindergarteners about being in a wheelchair. She was one of the first people who let me publicly speak up for myself. There are so many times where I’m thankful for teachers I had, for the times I spent learning how to open a door by myself, learning how to hold a tray and get to a lunch table, learning how to play soccer when my legs don’t kick. I didn’t give up.
Being an adult with a disability is obviously harder. I’ve tried many things that have not worked out, but it doesn’t mean I’ve failed or I’ve given up. I’m learning just as every 20-something learns. My entire life I knew I wouldn’t live in Wisconsin longer than necessary. I always wanted to live where the climate is warmer (snow is NOT accessible at all), and I finally just MOVED the day after I turned 23 years old.
I now live over 700 miles away from my mother, almost 800 miles away from my father. As difficult as it has been, I did the right thing. This is the happiest I’ve been in my life. I have a great “Tennessee” family as we call it. I’m in a place where everyone is different and nothing matters except having a good time with good friends that will be there for you when you need them. I’m finding out that my disability doesn’t matter to those who do matter. This is how life should be, a network of knowing that you’ll always be surrounded by people who enjoy your company and friendship.