Pointless Perfectionism

You would think that when you are diagnosed with a terminal illness you are immune from the impossible standards society places on women. Certainly there are more pressing issues for me to stress over like my respiratory function and figuring out my end of life wishes, yet, I still fall victim to a pattern of thought I didn’t know I had such a tight grip on. I didn't realize how self critical I was of my body until I had ALS. I'm pretty sure every woman has made an unspoken routine out of criticizing their bodies. And let me tell you, one could really have a field day picking apart a body with ALS. Let me take you on a journey of my body and mind.

To truly understand my damaged mindset, you first need to know who I was before ALS. I was an active person, played sports my whole life, and was passionate about staying fit. I'm 5' 4", weighed 120 pounds and wore a size 2. I exercised 5 days a week at least. I loved cardio, weight lifting, HIIT workouts, yoga, kickboxing, pilates, spin, you name it. My husband is even more into exercise–it's not uncommon for random people to approach him and ask how much he can bench. It’s a passion and a lifestyle we shared. I took a lot of pride in how I looked, yet was never quite satisfied. I chased an unobtainable appearance without really knowing it. Not unlike how I approached everything else - work harder than anyone you know and tell yourself it's still not good enough. Ah, the American dream. But I digress.  

Even with ALS, I manage to scan and criticize my body. I'll start with my feet. They're often swollen and red and thanks to foot drop they basically flop downwards and look like dead fish. I have no movement in my ankles or toes,so I question if they're even part of me anymore. Then there's my legs. I've always had skinny calves, but now they're the size of popsicle sticks. The muscle atrophy came with an ice cream scooper to everywhere my muscles used to be. I won't claim to ever have had a booty, but pancake butt isn't even the right description. It's just not even there. My arms are also stripped of muscle, my wrists are the circumference of a toddler's. My fingers are stuck in a permanent claw and my arms are so stiff they look glued to my body. 

With all this talk of skin and bones you would assume it at least comes with a flat stomach, right? Nope! Somehow all of my body fat has nestled in my mid section. And since my abdominal muscles are weak, everything just hangs out. For the first time in my life I have a belly and I hate it. The one part of me that has stayed intact is my boobs which my husband is very happy about. I'll take the win! My facial muscles are also weak. I can't smile voluntarily so I'm stuck with an emotionless stare unless something really cracks me up, and my mouth sort of hangs open, it drives me nuts! It can be hard to feel like me. Without my defining features I feel like a shell of the person I used to be. I wish I could wear a disclaimer that explains I wasn’t always like this. What does that say about me?

It's embarrassing to admit I even have these thoughts. I'm battling a disease that paralyzes me bit by bit, trapping me in my body and I'm concerned about looking attractive while it’s happening? It's ridiculous. But you can't just switch off negative self-talk. You don't automatically evolve as a person because you're disabled or dying. But I have made a lot of progress since being faced with the extremely challenging circumstances that come with ALS. All of this has taught me how silly and pointless it is to waste energy judging your body, something you have no control over. I have tried to shift my focus on what my body does for me. 

Thank you, neck, for holding my head up. 

I'm so grateful my legs can support my weight, so I can stand assisted giving my butt a nice break from sitting. 

Thank you, diaphragm and lungs, for helping me breathe unassisted 4.5 years after my diagnosis. 

Hey boobs - keep doing you. 

I hope all women can learn to not only stop criticizing their bodies, but start to praise them. It might not be the body of your dreams, but it's the only one you're going to get. When you take a look in the mirror next time maybe you'll see it's actually not half bad. Look at you, taking body image advice from a skinny bitch.