This Is My 'Normal' as a Person With Spina Bifida

Everyone’s definition of a normal life is different, so what is normal, anyway?

My normal is waking up in too much pain to get up right away.

My normal is having to set multiple alarms in order to wake up at a reasonable hour.

My normal is sitting on the side of the bed trying to gather the strength to get into my wheelchair.

My normal is only being able to shower in the actual tub once or twice a week when I get my pressure sore bandages changed.

My normal is staring at my myriad pill and supplement bottles, trying to remember if I took them yet today.

My normal is microwave meals or sandwiches for any meal that my boyfriend, Philip, can’t cook for me.

My normal is praying I don’t spill my water or my coffee on my bandages because that means Dad has to help me change them.

My normal is waiting to clean the guinea pig cage until I have the energy to do so or being frustrated when I miss my window of opportunity.

My normal is forgetting what it feels like to be a zero on the pain scale.

My normal is falling asleep sitting up several times a day.

My normal is struggling to remember to write a to-do list, let alone do the things on my to-do list.

My normal is relying on other people to drive me where I need to go.

My normal is only leaving my apartment to go to my doctor appointments, see my family, or go to church.

My normal is struggling to push my wheelchair in my apartment due to the carpet.

My normal is avoiding starting the dryer because it means standing up and standing up is hard.

My normal is doctor appointments every Friday morning.

My normal is forgetting to go to the bathroom until it’s an emergency due to my neurogenic bladder and bowel refusing to give me signals that I have to go.

My normal is having to wash my laundry more than everyone else for the same reason.

My normal is watching my niece and nephew play in the yard at my parents’ house from the screened porch instead of getting to play with them.

My normal is missing chunks of television shows and movies because I fell asleep.

My normal is laughing so hard that I get a Chiari headache, and then laughing some more because I’m just that happy when I’m with my friends and family.

My normal is getting to give my niece and nephew rides on my wheelchair even though they’re both getting so big.

My normal is knowing Philip always has my back… he literally always has my back because he pushes my wheelchair everywhere when we’re together.

My normal is inventing new and unusual ways to do chores and stuff from my wheelchair.

My normal is getting asked by random passersby why I’m in a wheelchair and chuckling when their kids tell me how they want to use a wheelchair too.

My normal is giving my wheelchairs names like “The Sunflower” and “BlueBelle.”

My normal is knowing incredibly cool people with spina bifida all over the country because I “met” them in support groups.

My normal is stubbornly refusing to take no for an answer when I have a goal in mind.

My normal is my body reminding me that it has limits, even if I don’t want to admit it.

My normal is learning to listen when my body says, “No, Janie. Not today.”

My normal is complicated.

My normal is messy.

My normal is stressful.

My normal can be lots of fun.

My normal is not your normal, but really, what is “normal” anyway?