I am not ALS.
I’m not even a PALS. And not just because I hate that cutesy-ass word for us.
I am a person who happens to have been diagnosed with ALS.
I am very clear about this particularity, because I am terrified of becoming my diagnosis. To get to a point where that is all there is to me. I’ve seen what that is, and how miserable it is to be around, and I can’t even imagine how miserable it must be to live that way. To get to a point in your life where all there is to you is a terrible disease. Where you feel there is nothing more interesting about you, nothing more important about you, than a medical diagnosis.
I know several people who are their disease. Fibromyalgia in most cases, Crohn’s disease or MS in another. And these are horrible things to have, their suffering is very real, do not misunderstand, and I sympathize with them completely. But every single conversation with them somehow comes around to their disease.
“It’s a beautiful day!”
“Yeah I’d do gardening if I wasn’t sure it’d cause a flareup.”
“I had the most delicious cheese the other day.”
“I can’t have cheese, it wrecks my guts.”
“Today is my birthday. This statement is all about me.”
“…I have Crohns disease you know.”
It becomes tiresome. Quickly. You stop hanging out with these people because every single thing always comes back to their disease. And they might be lovely people, and their struggle is very real. …Usually. It’s been my unfortunate conclusion that most people who complain the most are the ones suffering the least. The girl I know with Crohns is the major exception; she’s been through a lot of surgeries, had a lot of her guts removed, and her pain and suffering is a very real thing. But still. That’s all she ever talks about. Even when she posts about something pretty she’d like to buy, it inevitably includes a wistful comment that she can’t afford it because she can’t work because SHE HAS A DISEASE YOU KNOW.
It’s the same as people who are nothing but their sexuality – be they HETERO MAN or LESBIAN or whatever, wearing that one little piece of identity like a badge and an explanation. “Describe yourself. ” “I’m a gay man.” “…okay but what else? Do you like pasta? Where are you from? What kind of hobbies do you have? What information can you give me besides your preferred gender for sexual contact? THERE IS SURELY MORE TO YOU.” Or their job. GOD. THAT one. “I’m a lawyer.” “Okay, but for the OTHER hours of your life, who are you?” “…I don’t know what you mean.”
“My name is Ella and I have fibromyalgia.”
BZZZZZZZZZZZZZZZZT. THANK YOU FOR PLAYING, WE HAVE SOME LOVELY PARTING GIFTS FOR YOU INCLUDING ME NEVER STARTING A CONVERSATION WITH YOU AGAIN.
These people are MISERABLE to be around. They suck the joy out of every conversation with each reminder of their sickness. They dampen the mood, they darken the tone, they blight your soul a little bit. Speaking to them is an effort, and you have to mentally brace yourself for each encounter. And even worse – they harden your heart. It gets to a point where each facebook post makes you care less. When they post about wasting an entire day because they just couldn’t get out of bed for the pain, you get to a point where you just keep scrolling instead of replying “Oh my god! I’m so sorry! What can I do to help?” because…that’s the third time this week, and there’s nothing else to their feed. It becomes old hat. Typical. And I hate that you make me feel that way. And when “typical” for you is some variance of “I have a disease” then maybe you need to reevaluate some things.
This disease is a facet of me. It’s a very real part. And a very important part. But it is just that – a PART. Just like my gender, the color of my eyes, my weight, my sexuality, my hair color, my preference for apple juice over orange.
Every new development in my progression pushes me closer to the “I am my diagnosis” line. Every new prescription makes me feel like I am getting closer to being THE GIRL WHO TAKES ALL THESE PILLS BECAUSE SHE HAS A DISEASE. I refuse to hide the braces when I wear skirts, because fuck that noise, but it is an advertisement that I HAVE SOMETHING WRONG WITH ME EVERYBODY. Every missed hour of work due to a doctor appointment I have to make, every concession to my lifestyle I need to make, every time I ask to be dropped off at the curb so I don’t have to walk allllllll the way across a quarter mile of parking lot, choosing the bathroom stall with the handrails because it’s just easier, makes me feel like I’m becoming more of That Girl. That Girl with ALS.
It’s a hard line to walk. I’ve become aware that I talk about my situation freely – it’s nothing I’m ashamed of, nothing that I’ve done wrong, and so it’s nothing to hide – but I need to be careful that I don’t mention it in EVERY conversation. I talk a lot about it because it’s new. I want to be completely upfront about it, and I know people are curious but afraid to ask for fear of offending me somehow. So I’m blunt. But that’s not all I talk about. This blog is “All ALS, All the Time”, because that’s the POINT of this space, but in my journal, my facebook timeline, my day to day conversations, there’s so much other stuff going on. So many happier things. So many better things to talk about. There’s so much other interesting shit going on out there. ALS is depressing and boring, stickers are awesome. Japanese tea ceremonies are fascinating. Horchata is the fuel of the gods. Today’s Google homepage has a Rubik’s Cube you can solve!
There is so much LIFE out there. So much life in ME. So much more in there than just a shitty disease.
Yes, I have ALS. And grey eyes. And O+ blood. And several tattoos. And a mole above my lip like a beauty mark. And eyebrows so blonde they’re transparent so I have to draw them on every day. And two piercings in my nostril. Any of these things are just as valid a description of me than any other, and they’re not even the most interesting descriptions. They’re just descriptions of my body. Which, I like my body, but it’s not the best part of me. My kindness, my love, my fondness for petite swiss fruits candy, my mouse-like sneezes, my sarcasm, these things are more important. They’re WHO I am, not WHAT I am. And the WHO will always outweigh the WHAT.
Which is why it’s a fucking shame when you make the WHAT your WHO.