“You’re so vulnerable! How are you OK with that? It’s such an open way to live life. It’s beautiful.”
Firstly, this is a weird thing for someone to say. I don’t know how to respond to it. So, my response often is along the lines of, “Um …,” or, “I guess so?”
I’m going to respond here because I’ve always been better at explaining things through the written word.
I’m physically vulnerable, yes. I will not deny this part of myself. I rely solely on another person to take care of me, from basic survival to my wants.
This is not something that suddenly changed one day. This aspect of my life has stayed the same, and always will.
My physical vulnerability looks like this: Throughout the day, I have caregivers. Currently, I have two that I’m very comfortable with. But like all jobs, someone has to be trained. Meaning that they were once strangers.
Many strangers have seen me naked.
Strangers have wiped my butt.
That’s what vulnerability is for me. That’s what it looks like.
I know that this is different for those who don’t live this life. But you need to understand that I don’t feel different than you.
This physical vulnerability does not mean that I’m mentally vulnerable. Emotional vulnerability? Yes, though I would call it “sensitivity” and not “vulnerability.” Vulnerability implies that I’m susceptible to attack. Which, physically, yes I am. In any other sense, no I am not. I am only emotionally vulnerable around those who I’m very close with, not everyone I come in contact with.
I have no choice but to be OK with my physical vulnerability. It’s as normal and natural to me as your big toe is to your body. It is so ingrained in me that it might as well be built into my DNA.
I don’t go throwing around my vulnerability like it’s daydreams and glitter.
You just see it, because it’s physically written on me. You see me, and you think I live my life more openly than anyone else. And I don’t — not really. Emotionally, I have the same types of attachments that everyone else does. But I don’t become easily attached to people. I don’t overshare.
I’m glad that you think my life is beautiful. I do, too. But not specifically because of my vulnerability.
Please understand that this is just me, living my life, with the cards that I’ve been given.
This is not some sort of spiritual awakening.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.