Dear real life people,
Lately I have been addicted to Jane the Virgin. I’m definitely one of those people who upon becoming enthralled with a book, show, movie or album, begins to envision their life in the same style of whatever has them so enchanted. I’ve always had a wild imagination and it’s one trait I’m (mostly) thankful for, as it makes my mind far more intriguing than what I imagine it would be with a tamer processing system.
So of course, I’ve been fantasizing about my life as much as Jane herself does in the show. Part of the show is about Jane’s journey to become a writer, and that part I don’t have to imagine at all, because I’m on the same one…though it’s currently taken a back seat to my Netflix addiction. Oops.
That’s not the point of the post. What is the point of this, you ask? Well hold onto your butts, real life people who are definitely not television characters, because I’m about to tell you.
Being chronically ill and disabled is, for lack of a better phrase, a clusterfuck. It’s a full time job with no pay and endless suffering. Not to mention people like me never had a say in whether or not we actually wanted the job to begin with. We were kind of just launched into the messy world of hospitals and illness, the world said, “good luck, bitches!” and that was about it. For some people, they were launched into this world in their 40’s or 50’s. If they’re extremely lucky like my grandmother, they are fortunate enough to not have to deal with it until their late 80’s. If a person is extremely unfortunate like myself, the minute we took our first breath of air, it hurt, because we were already sick and our body had to start fighting for us the very second it came to life.
As I’ve said a bazillion times before, I have been unwell starting from the first day of my existence, which would be July 4th, 1990 at 6:25am, in case you were wondering, which you most likely weren’t. From there it only got worse and despite my grandmother’s relentlessly hopeful words such as, “you’ll grow out of it,” and, “it won’t last forever,” she was wrong. Instead I grew more into my illnesses and collected more along the way.
Some of my illnesses I was not diagnosed with until my teens, though I had felt the symptoms of them for most of my life. I just often lacked the descriptors needed to explain what exactly what wrong with me. One of the illnesses I’ve have for just about forever is Osteoarthritis. Though I was not officially diagnosed until I was in my early 20’s, I’ve felt the pain of it since I was about 7 years old.
Flashback time! The first time I ever felt spinal pain I was 7 years old, waiting at my elementary school in a SINGLE. FILED. LINE. (remember how our teachers were so demanding of that?) My grandmother had just left because my teacher had come out, and one by one, the tiny humans in front of me marched into the classroom. I made the move to follow, but was suddenly paralyzed with pain. A searing feeling flowed into my back, along my spine, and up into my neck. I felt like I couldn’t breathe let alone walk, but I had to. I was terrified yet couldn’t describe it to my teacher, and for some reason remember feeling as if even if I did, she wouldn’t believe me. Finally I sat in the hard plastic seat at my desk, which was spinal kryptonite. I went halfway through the day before the pain finally allowed me to function a bit more, but I was still scared. I never told anyone.
As life continued on my spinal pain only got worse.. I’m not sure why I never told anyone. Maybe it was because I was abused, maybe it was because my young mind couldn’t articulate it. It wasn’t until I was 16 and I got my periods that I finally spoke up, because the periods had made the spinal pain so much worse that not only did my back hurt, but my legs would give out so I couldn’t walk, and I began to pass out nearly every time I had my periods as they were triggering my Vasovgal Syncope.
Flash forward to when I was 25. I found out after I had my hysterectomy that while I had arthritis in my neck and spine, I also had endometriosis on a nerve cluster in my spine that made the arthritis as well as my entire existence so, so much worse. The endometriosis was removed along with my uterus, and I was incredibly relieved. However, after I recovered from my surgery my relief turned into disappointment. While I was liberated from my horrific periods, my spinal pain continued to increase, because I still had arthritis and there is just nothing to be done about that.
I work at a salon where all kinds of people come in. There are especially a lot of older women that come into my salon, and the majority of them are absolutely lovely and friendly as can be. However, regardless of how kind they are, I hear this phrase over and over that frankly, makes my fucking skin crawl: “enjoy it while you’re young, just wait till you get older.” I realize that these women know nothing about me. I realize that it’s a harmless cliche phrase that people have been saying to their younger generations for forever. But you know what? It still makes me angry. Like “Hulk Smash!” angry.
They don’t understand that for people such as myself who have been chronically ill from the very start, this phrase is incredibly insulting. To start, the phrase, “enjoy it while you’re young,” is insinuating that I haven’t experienced health issues, pain, suffering, or loss, when in reality I’ve most likely experienced more of every one of those than some people three times my age. I’m well aware that 26 is young, but I have lived a life that has been nothing but struggle. I’ve met people far older than me who have never been hospitalized, never been in an ambulance, or have never been diagnosed with a major illness, and while I think that’s wonderful because I certainly don’t wish my misery on anyone, it’s absolutely mind blowing to me that a person’s life could not contain those things.
To me, while I know my life is not an “average” one, it is normal to me because it’s all I’ve ever known. I’ve never been able to enjoy being young because instead of throwing parties, I was hospitalized. Instead of drinking and experimenting, I was double checking that I had enough Advil and my Epi-Pen to get me through a school day. I never got to enjoy being young, because my health issues have always come first. Now in my late 20’s I often feel like I’ve been robbed of my teenage years, and sometimes I hope for a redo. My sister says that it is possible that I’m aging backwards; I can only hope she is right.
Furthermore, I don’t really have to “wait until I’m older,” to experience my body failing me. I’ve been living with it since I was a child, and I will be the rest of my life. I mean for fuck’s sake, I’ve had arthritis since my childhood. Just the other day, my “adoptive mother” Rose told me as I was cracking my knuckles, “don’t do that! You’ll get arthritis!” my immediate reply was, “I already have it.”
Here is my plea to everyone, but especially those who are older than 30: please, for the love of every god I can think of including Cthulhu and the Flying Spaghetti Monster:
STOP ASSUMING SOMEONE’S LIFE IS EASY JUST BECAUSE THEY ARE YOUNG. IT’S DUMB. IT’S RUDE. IT’S ANNOYING.
It’s true that my life isn’t harder than everyone’s, regardless of age. I know there are billions of people who have suffered just as much as I if not worse. But that’s exactly my point. I don’t go around assuming that my life is worse and that no one could possibly understand what it’s like. I don’t tell people, “just wait till you’re 26 and get diagnosed with Chronic Fatigue Syndrome,” or, “just wait until you’re hospitalized for the 150th time, you basically know as much as the nurses do and can read their minds.” That would be ignorant and I’m almost certain most people would find that strange. So if that’s unacceptable, the phrase, “just wait till your older,” should be as well.
For those who may think I’m being overly sensitive and that my generation is way to “politically correct” or “touchy”, I’d like to remind them of the fact that people used to (and often still get insulted) when words like vagina, fuck and penis are used in the media. People used to be appalled at the thought of black children going to school with white children. People used to be threatened by the idea of a woman working a full time job. So believe me when I tell you that my generation is NOT the sensitive one.
On the contrary, I am thankful to be a dirty rotten “millennial” (god I hate that word) because our generation is slowly but surely working to become more accepting of so many things, and that includes beginning to understand disabled people like me.I want to be a part of a world that is more empathetic and understanding, even if my itty-bitty contribution is this blog.
I hope more than anything that I get old, because I have been through so many events in my life which nearly ended before it ever had the chance to start. I look forward to my wrinkles and my grey hair because they will mean I’ve survived every single one of my diagnoses.
Here’s to your life my dear reader, however long it’s been so far, and however much pain it has contained.
I hope that it continues on in the most wondrous ways.
I’ve never so adored you, I’m twisting allegories now.
I want to complicate you, don’t let me do this to myself.
I’m chasing roller coasters, I’ve got to have you closer now.
Endless romantic stories, you never could control me.