The Chronic Illness Files

Chronic Illness Files: Why I Named my Body

She is selfish. She is unreliable. She is particular about darn near everything. She doesn’t like exercise. She doesn’t like it when it’s too cold, or when it’s too hot, oh or too humid. She doesn’t like the sun, but she also doesn’t like it when it rains. She enjoys long naps. She can’t handle stress. She does what she wants when she wants to and there really isn’t anything anyone can do about it, because she throws outrageous temper tantrums. She is heavy. She doesn’t like to go outside. She doesn’t like to stick to a schedule or plan.

She isn’t someone you would want to be friends with.

Her name is Lucy, and she is my body.

Why I Named My Body

When I started to become more symptomatic with periodic paralysis and fainting (due to my Dysautonomia/POTS), I noticed that I felt as though I was living inside of a toddler. A toddler wouldn’t just go along with the normal activities of a woman in her twenties. The toddler would want a snack or nap in the middle of running errands and may just throw themselves on the ground in the center of a crowded Target when their demands were not met. That was me, the 25-year-old toddler laying on the ground at Target.

With worsening and unpredictable symptoms, I still live with my mom and dad. Along with working a full time job, dealing with her own health problems, singlehandedly taking care of the house, preparing all meals, doing daily chores, and so much more, my mom has taken on the role of caregiver. My mom now drives me around the city to countless doctor appointments, helps me with personal hygiene needs, handles all of my medication (because sometimes I am hella suicidal and shouldn’t be around so many pills that could kill me. I’m just keeping it real.), and just about everything. My mom is a saint. She does everything for me. I love her so much.

Unfortunately, all of this is stressful. When I faint, my mom is the one there holding my legs up in the air until I wake up. She holds all of this weight on her; sometimes literally. I always think that Jesus suffered on the cross, but it was Mary who felt the most pain. To see your child go through something so terrible and then have to stand on the sideline knowing there is nothing you can do to help them; that is a pain that I can’t even imagine.

Sometimes when I faint, I gain the ability to hear before I can speak or move. So, there were many times when I would start to wake up from fainting and my mom would be there to help and she would say things like: ‘Really? Again?’ or ‘What are you doing on the floor?’ or ‘Are you kidding me?’. She didn’t know it, but I could hear what she was saying.

I kept thinking she was saying those bitter phrases to me, as if the situation was my fault. I kept thinking that my mom was like so many others in my life, thinking I was faking this for attention. I came to the conclusion that my mom resented me, but unlike others who said things to my face, she just hid it until she thought I couldn’t hear her. (Again, my internal dialogue isn’t always filled with uplifting thoughts.)

One day I decided to tell her how I felt. I told her that I could hear all of the horrible things that she was saying and that I just wanted to die because I thought she didn’t love me. My mom immediately stood up and held me as I had my mental breakdown. She assured me that her outbursts of anger or annoyance during those moments weren’t toward me at all. My mom told me that those comments were toward God, the situation itself, or even my body for failing me.

It was then that we came up with a solution. We would name my body.

I chose the name Lucy.

It is freeing to differentiate myself from my body. I am a highly responsible Summa Cum Laude college graduate who just so happens to live inside of a body that has a completely different lifestyle than I do… did.

Now my mom, or others who are in the loop, use Lucy as a separate entity when talking about my symptoms.

Think of the difference between hearing “It’s always hard to make plans with you.” vs “Lucy is so crazy, it’s hard to make plans around her.” For me, the difference is HUGE!

The small disassociation allows me to know that it is not my fault if I can’t make it to a planned meeting AND just as importantly, that the person using “Lucy” to describe my body’s inability to show up tells me that they understand that the situation is out of my control.

I am Samantha. I live inside of Lucy. Sometimes we get along fine and other times she’s a psychotic bitch who overpowers me until I am completely at her mercy.

We just take things one day at a time.

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