My mom inspired me this week. She inspires me all the time, but that’s not the point. She gave you a Halloween Top 5, so I’m going to give you one, too. But this time it’s from the patient’s point of view and you get more than just a list. It may even make me change how I want to dress up tomorrow! 

5 Ways I Feel Like Frankenstein

1. I’ve been continually poked, prodded, and cut into. How would that not make me feel like Frankenstein? I’ve had doctors, physical therapists, nurses, medical assistants, medical technicians of every kind (think dozens of MRIs, CTs, X-rays, etc.) and so many more people poke, prod, and cut into me. Not a few. Hundreds. Of course they had my consent, but it’s not like I wanted it. It’s not like I want to be turned into the real-life Frankenstein. This leads into reason #2.

2. Rare conditions and experimental surgeries. I have felt like a medical experiment for as long as I can remember. I was passed from doctor to doctor for them to run test after test, just to have them tell me I was crazy or making it up. Or tell me they can’t help me because they don’t know what’s wrong with me. For them to give up on me. Finally I found my current doctor that has helped and continues to help with all of my diagnoses.

Even he is oddly fascinated by me, though. As well as people like me. He’s told me multiple times that I am a medical miracle and a medical mystery. That he’s going to be writing medical journals and papers on me. Which I actually think is really cool, and I’m looking forward to reading them. But the fact that I AM a medical mystery, makes me feel more like Frankenstein than ever. I’m a freak of medical nature. I know that. I have to count the number of rare conditions I have on TWO hands. I’m thinking soon I’ll have to start counting with my toes as well. On the first 2 surgeries I had, I was the second person in the state to get those surgeries. The SECOND. I’m a human guinea pig. I’m a human Frankenstein. I’m what feels like a monster. 

3. Frankenstein’s boot. Imagine being a tiny, skinny, 5’11” 120-pound 9th grader with a huge chunky boot on for almost a year. The whole year and part of the summer even. I was also on crutches for most, if not all, of that time. Imagine the stares I got. The big chunky boot that stood out if I wore anything other than black skinny jeans. Even then, I’m sure it was still noticeable. How do you not notice one leg being 2x the size of the other, clomping around ungracefully and bumping into things? 

4. Scars, bruises, and physical abnormalities. Frankenstein is an odd color. He’s green. That’s partially what makes him a monster, as well as his scars and bolts. Well guess what, I’ve had bolts too.

Traction 1
Traction 2

I have a massive titanium zipper-looking contraption and screws connecting my spine to my skull. We have a cool video of it after they installed it and before they closed me up, but I didn’t want to make anyone queasy. I have a large titanium plate on the front of my brain and head. My legs and arms have been blue/purple/red and had white splotches for as long as I can remember. I don’t WANT these odd contraptions, colors and scars. I’ve already done a post about my scars. I love my scars, don’t get me wrong. My scars are beautiful and my scars show the many many unnatural and scary things I’ve survived. My scars do add on to making me feel like a monster, though. Frankenstein had scars. Lots of them. I do, too. Although my scars are beautiful in my eyes, I know others see them as ugly. Which contributes to my feeling like a monster.

MALS Scar
Craniotomy scar
Auto transplant incision
Healed auto transplant scar
Spinal Fusion Scar

5. Pure Rage. Frankenstein is famous for his rages and howls. I bet he didn’t even know he was doing it. He didn’t know how else to communicate. I’ve done that, too. My poor family has had to deal with my coming completely unhinged and even having anger blackouts where I would brutally lash out without even knowing that I did. Even subconsciously I had rages. Whether it was before or after my coma, I can’t and don’t care to remember which, I unconsciously ripped out my IVs. Not just took them out. RIPPED them out. 

IV bruising
IV bruising

Unconsciously I knew I was hooked up to machines and IVs and I didn’t want to be there. Even unconsciously, I didn’t want to be a monster.

Well, bonus! You get one more! All of these things kinda culminate in one overall theme:

6. People staring. Of course most people don’t stare to be rude. They are just curious. Curious because I was bald, curious because of my neck brace or boot, curious as to why I wore “ballet tights” under my pants, curious because I use handicap parking sometimes but physically to a stranger’s eye, at times it looks like nothings wrong with me. Curiosity killed the cat. Curiosity killed my confidence. Curiosity made Frankenstein the monster.

I understand why people would be curious, I really do. I’m a curious person as well. But please don’t stare. Please don’t make someone who already feels like a monster, think that everyone else thinks they’re a monster as well. Have you ever wondered how Frankenstein felt when everyone stared at him? He didn’t look the way he did because he wanted to. He didn’t have the choice. He couldn’t stop the stares. He couldn’t escape how they made him feel. 

So tomorrow night, if and when you are watching adorable children dressed up in all kinds of costumes, go ahead — stare. Laugh at the intended grossness of some of their outfits. But on Sunday when you wake up: STOP! Think about how your stares — and your words — impact people who may already be at their lowest low. Please don’t make us feel like more of a monster than we already do!

Becca Signature
Jen

Jen

3 Comments

  • calvin ferguson says:

    I love you !! grampa F

  • Kristina says:

    Thank you Jen, thank you for putting into words some of the things I have felt but couldn’t describe. I am an adult but went in for a routine surgery that destroyed my body. 3 1/2 years later I’m still trying to recover. Your story touched me, because of your inspiration I am going to sponsor a monster in hopes it brings a child some comfort.

    Thank you for sharing your story and wanting to bring comfort and love to others.

    • Jen says:

      Hi Kristina. We’re very sorry to hear that you’ve had such a bad experience. You’re not alone. We’ve suffered traumatically from hospital mishaps ourselves.

      If you feel comfortable doing so, we invite you to send us your story through our website so we can share it with others on our Monster Monday feature and hopefully help someone else who needs to hear what you have to share.

Leave a Reply