Cerebral Palsy Awareness

Since March is Cerebral Palsy Awareness Month, I thought I would tell you more about myself. I have spastic quadriplegic cerebral palsy. I have had over 150 orthopedic surgeries since the age of five. All except ten of the surgeries were performed at Shriners Hospital for Children in Chicago, IL. I have several other conditions. One is colon dysfunction; the food does not travel through my colon but rather stays there. I have irritable bowel syndrome, I have chronic anemia and I also have an absorption problem, where my body doesn’t absorb the nutrients from the food I eat.

I also suffer from a migraine disorder that causes 4-5 migraines per week. I receive 32 Botox injections in my head, neck, and shoulders every three months to help with this. I get iron infusions every three months along with B12 shots every two weeks. I need Lovenox shots every day for the rest of my life. I also suffer from a rare kidney stone disease, that no matter what, I constantly produce kidney stones, so I have surgery 1-2 times per year. During this procedure they take the kidney stones out through my back. Unfortunately, there is no medication that can help with this. Recently, I was also diagnosed with skin cancer on my face and belly. I will be undergoing surgery to remove this.

I am not telling you all of this to complain or to make you to feel bad for me. I believe that I am truly blessed. Growing up, before I started going to Shriners Hospital, doctors told my mom I would never be able to walk, talk, live independently, or really do anything. Shriners believed in me and thanks to them, as well as support from my mom, siblings, and friends, I live on my own in an apartment, work a fulltime job as a special education teacher, and have a social life. My life is not always easy, but it’s definitely always interesting. 

With my new Quantum Edge® 3 electric wheelchair with iLevel® technology, life has been much easier! I can drive my wheelchair and have a drink with me, thanks to my fancy cupholder, to help reduce kidney stones. My wheelchair reclines so that I am able to wash my hair easily, especially during this self-quarantine time. The LED lights on my electric wheelchair are extremely helpful when I go for a walk in the evening, because it allows people to see me better. I do not have to worry about my cell phone dying, because I use the USB charger to keep it charged. This allows me to stay in constant contact with my friends, family, doctors, and students. This is especially helpful with my parents and students, since we moved to online learning due to the current COVID-19 pandemic.

My wheelchair elevates at iLevel, as I shared with you in an earlier blog. It helps me to do complete activities around the classroom, as well as at home. I can now look in my freezer without having to ask my friends to tell me what is in there. I can get things out of the refrigerator if they are not too heavy. I can get things out of the dishwasher and the kitchen drawers. It also allows me to transition easily into my big comfy bed, which I love to do after a long day! 

Everyone has reasons for why life can be difficult and challenging, but what I want to tell you that life is also a blessing. I have been able to do so many amazing things in my life and met tons of amazing people. I would not be the person I am if I hadn’t been through so many struggles throughout life. I often get asked if I would change the fact that I am in a wheelchair and my response is no! My wheelchair is not who I am but rather how I get around. My motto is, “It’s not who you think you are that holds you back, it’s who you think you’re not.”

About Amy Bleile: Amy is a former Ms. Wheelchair Wisconsin and special education teacher. She resides in Whitewater, WI, and participates in wheelchair basketball. Amy also enjoys attending concerts and experiencing everything that the world has to offer. Click here to learn more about Amy.