A Disease by any other name…

What’s in a Name?

We all know what’s next, “a rose by any other name, would smell as sweet.” The line from Romeo’s soliloquy, and a little tidbit I identified with, in freshman English class from my chameleon-like array of names.  I mentioned in my first blog, that my blog title, and screenname, is both inspired by my MS, and my wide array of names. Bits, half of the lips of sounds my toddler, big brother being unable to pronounce Elizabeth, and it behind heard as Little Bits.  Then came, Infrabit, Littles, Bits, Little Pippy Pie, and one my person favorites, Itzy, the name my beautiful, kind, blond bombshell, Aunt Elaine calls me.  

When I was five years old, I had a conversation with my mom, on my identity. I was called so many names, I wasn’t sure of how to introduce myself to my peers. I was starting preschool, what name would be on my cubby? She smiled, and must have felt a tear at her curly locked baby growing up, and told me my name was Elizabeth Rhianna. Elizabeth was my first name, and Rhianna my middle name. I told her I wanted to be known as Rhianna, as it sounded like the name of a princess. Ironically, I should have factually chosen my other name, to become a Queen, but I think I cherished the difference of the name.

My five year old self with my two older brothers, at a Union battlefield demonstration.

Eventually, the difference not only set me apart as a person with a unique name, it also made my introductions a bit cumbersome.  Rhiaaaana?  Brianna?  Long A? No, short a? Rhianna…  There was no famous singer yet, with that name.  It was an oddity.  It was a thing I had to spell.  Coupled with my last name, having to spell everything all the time.  Having to not just spell but name each letter, R- Romeo, H- Hotel, I- India… and so on.  Over and over.

When I went to college, things were so new and different anyway. I was a Mormon, an oddity, growing up in North Carolina, bible belt, Southern Baptist country. Now I was returning to the land of my ancestors. The place where my grandma called me Elizabeth. A place where I would have to explain, or switch names back and forth in the one hour distance from Salt Lake City to Provo. Explain to each professor my name, the spelling, the pronunciation. It was just easier to switch. I am now Elizabeth. I grew up; I took the name of my birth and my ancestors. I assimilated in a way, away from the name I chose, and the one my Mom chose for me. My middle name, Rhianna. Returning to the obscure.

Best Friend, Dorothy and me, Rhianna at high school graduation.

Today is my day off.  Homeschool starts again tomorrow.  I should have been working on my blog, but I was tired.  I slept in and made myself a second cup of coffee, and watched the rebirth of a self indulgent show, the Sex in the City revamp, what’s it called again?  And Just Like That…

In Well, just like that, while Miranda and her professor were awaiting a dinner reservation, my son’s middle name was called. Just like that. I amperson with a name, that has to carefully choose a name to give for dinner reservations. My husband uses a different name, or has me give my name, because why would you want to hear someone struggling to say your name when you are called. Add cog fog and MS to the mix, and names sometimes swirled in my head. Often leaving me unclear on which name, to give when.

Back to the show, Just like that, clear as a bell, the middle name I chose for my son. Satish. Rolling off someone’s tongue. I paused. I stopped watching as that moment rolled over me. A change. My kids have unique names, but they are now in a sea of uniqueness. Uniqueness is more common than it was when my husband and I grew up. Maybe they won’t stick out like us. Maybe they won’t have to explain their names so much. Maybe they can just be them. The gratitude that thought gives rolled over me, randomly, on my afternoon off. In the pause before the year starts rolling.

Any other name, just as sweet. As Multiple Sclerosis, by any other name, sucks just as bad. But maybe it doesn’t completely. My changing names and my changing disease, has also become more common, more mainstream. I’ve gone from a person having to explain her obscure name, then her obscure disease, to a woman whose disease is shared by Selma Blair, Montel Williams, Christina Applegate. I’m in the company of 2.8 million others, suffering with the same disease. (I was diagnosed with MS in 2004, after turning 20 years old. There were 200,000 diagnosed with MS then in the US.)

Curly haired me, trekking five years into MS diagnosis, to a waterfall that feeds into Cane Creek.

Sometimes my life moves like Cane Creek, that flows through my hometown in North Carolina, rutted, ever changing aside a stony back road. Traversed only by 4×4, ATV, mountain bike or foot. Pebble strewn creek of rushing water, picking up leaves and redepositing them downstream. Let us go into 2022 with the acceptance that life is always changing. Bringing good, and bad, but hopefully more good. Names can change, diseases can. Obscure can become commonplace, and devastating and tragic can become manageable. People who fight MS, no longer seen as sad, or “you poor girl,” but can be self identifying warriors that stumble and keep going. That poor girl, transforms that sexy babe with a cane. Or that bad a$$ that still can bench press more than his cohorts though he stumbles sometimes. Or that person celebrating chair transfers, progress in physical therapy, or just opening their eyes another day, and looking forward, towards tomorrow. We are overcoming our chronic diseases in all the ways that matter. Beautiful, handsome, strong, and unique YOU. You, regardless of your name, or the name of your disease; you are a unique warrior.

Comments are so welcome.  About your 2021, what you look forward to in 2022.  I would love to hear! 

Happy 2022! May God be with you til we meet again…

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