When I heard the name of my condition, Charcot, I was relieved it at least sounded like the name of a romantic poet rather than a bone destroying autoimmune condition. And then I learned Charcot is actually the name of the doctor in the late 1800's who discovered the deforming disease due to the multitudes of men coming to him with tertiary symptoms of syphilis. That's right, turns out the dreaded STD not only affects your peter, and your brain, but your feet fall apart right along with the rest of you. Let me be clear, not all people who have Charcot have syphilis. I do not have syphilis.
Learning this fun fact about Charcot was a revelation for my still-all-there (for the most part) brain. I realized not all fairy tales lead to epic love poems. Sometimes, they take you on a journey of loss, STD symptoms, and a lot of butt soreness from falling on the ground and having to scoot on your glutes to pick yourself up and find your happy ending (and not the kind of happy ending that leads to STD symptoms).
I've always believed my prince is waiting out there for me. I've already shared in a previous post how I would sing my sweet, lovesick song to the river god on the back of my family's ski boat awaiting to be captured and taken away to be his lake princess (I also grew up next to a 200 acre wood and would sing mournfully out my window as I cleaned my bedroom Cinderella style hoping either woodland animal friends or a prince charming would come to my aid. I can still sing my melancholic melody for you to this day.). But that's only the beginning of my pining for princes and romantic neurotic notions.
In the 5th grade, at a classmate's birthday party, I purposefully tangled myself in rusty barbed wire during a Texas' coyote packed dark night while playing flashlight hide and seek. I awaited patiently for my long time crush to happen upon my plight where I then planned on feigning distress and having him valiantly free me and carry me off into the moonlight. I pictured the passionate embrace, his inability to stop himself from noticing how beautiful my eyes gleamed in the light of our flashlights, and then the profession of his undying love for me that could only match my own passion for him. Sadly, it was not my handsome savior who happened upon me but the birthday girl's father who heard my yowls for assistance and came to my aid. I had done a damn good job of tangling myself up in the rusty barbed wire and in the end of the crowd attracting de-tangling my jeans had to be cut off. I was left standing, mortified, amidst my entire class of fellow 12 year olds, standing in my Disney Little Mermaid panties.
Then there was that time at summer camp when I was knocked in the head with a jousting stick and fell flat on my face. Out of sheer embarrassment I began to blubber. Not wanting to be perceived as a pansy I feigned injury as well as a Brazilian soccer player during the World Cup and was whisked off to the the makeshift camp ER. I laid in bed feverishly calling out my camp crush's name as if I had been cast in the movie Love in the Time of Cholera. He came running to my aid and held my hand all afternoon while I lay there stifling sniffles and from time to time gulping down General Hospital sized tears. For the rest of the camp term my 14 year old vein self paid dearly by being stuck in a neck brace that prevented me from turning my neck in any direction.
Or the other time when I was 13, where my first kiss was ruined by a portly blonde boy. I always had imagined my first kiss would be upon the back of a pegasus while flying through the sky with fairy sparkles and meadow flowers dancing around me and my one true love while he clutched me to his chest never to let me go.
Instead, the blonde boy flipped our canoe over in the middle of the stagnant camp lake and demanded I kiss him if I wanted to not drown. After returning to shore, with forearm pressed to forehead, I tore across the pier sobbing and spitting out the taste of Cheetos and the sweaty peck the brute had left on my lips. I couldn't BARE to share what had happened with anyone except the one girl who I knew would share the dastardly act with everyone immediately. And oh, did the news spread like wild fire. And oh, didn't the one boy I wanted more than anything, the most handsome, desired, camp's best hockey player, hear. And oh, did he make things RIGHT that afternoon when it was time for the all camp afternoon swimming. He made things SO right when he dunked me under the water amongst the throngs of teaming, rowdy campers and kissed me full on French style. Braces and teeth clanked together like a Jamaican steel drum band as I learned my first lesson from the hockey player on tonsil hockey. He left for home the next day due to a family emergency but I told myself he had defied the camp counselors refusing to admit to our passionate kiss and sacrificed his remaining camp days to protect my honor.
Then there was that time the coastguard was called due to one of my romantic forays. We had met swimming in the seaweed brown waters of Port Aransas. My mom had taken me that morning to buy my first bikini so I was feeling like pretty hot stuff. So hot in fact when he asked me my name I responded humbly with, "I'm Ali and I'm a lifeguard model from Hawaii and I'm 17." I was 13. As the sun set we made plans to meet the next morning outside of my hotel room door before sunrise and take a romantic beach stroll. Well, that morning stroll lasted a few hours longer than expected. As we trudged back to the hotel we looked up at the sky noting the multitudes of squawking seagulls and numerous circling helicopters. Our little walk had ended up being more of a survival training escaping from being eaten alive by horse flies, jellyfish infested waters washing at our feet, and the sun frying our backsides. Not only were our shoulders as red as lobsters when we arrived back but our parent's faces who stood awaiting our return at the end of the hotel boardwalk glowed the same hue. My beach boy had missed his flight home to Oklahoma and his parents were sure he had been swept away by a riptide in the early morning hours. We never spoke to one another again. However, I did earn the title, "Hot dog Lips" when the next morning my bottom lip swelled to the size of an overcooked hot dog due to some pretty intense lip sucking that had happened on one of those sand dunes. I swore to the end it was just a sunburn making my lips pucker to ten times their size.
There was my long time crush from elementary school who had my heart from hello in the third grade. I even lopped off my long blonde locks to a cut similar to Ellen and demanded my mother help me throw out everything in my wardrobe pink and only buy flannels from the boys department at Mervyn's. I was determined to win his attention by joining his club, the Pitty Witty club, a club only for boys and the most Tom boys of them all. Even after being pushed out of trees, nicknamed "Squatting Squaw", breaking out in bacne from all of the sweaty sports playing, and missing recess daily for refusing to sing soprano in choir, Ian deemed I was still too girly to be accepted by his club.
I have a laundry list of lost loves and stories such as these. Like Ben who my mom accidentally brought home his schoolwork at the end of the year because all of his writing practice notebooks were titled, "Ali the Dragon" wherein the plot consisted of Ben and Ali the dragos flying away to dragon island and making dragon babies together.
But the most impactful relationship of my life would probably be Mikey, my first grade crush.
My best friend at the time, Felicia, who was known for her super cool purple cat jumpsuit fashion and amazing crayon drawing skills, was the prettiest most talented girl in our entire class. She made sure to tell me every day on the bus ride home just how pretty and talented she was. One day in particular she prodded me to share my deepest, darkest secret, and I couldn't contain myself. I shared with her my special dream I had had about Mikey where we were cuddled in bed together with my head lying on his shoulder and my arm draped over his chest. This, to me, was so secret and such a scandal being that is how I believed people "did it" as in, the dirty deed. That very afternoon, during arts and crafts, to my dismay and utter horror I watched as Felicia and Mikey sat at the end of the arts and crafts table and Felicia whispered my secret into Mikey's ear. I stood up and wailed, "HOW COULD YOOOOOU, FELICIA?!" The bewildered teacher ushered me outside as quickly as she could as tears streamed down my face. She prodded me to share what was so devastating. I couldn't bring myself to say the words. My deepest, darkest secret had been exposed and I was mortified. Instead, I chose a much less embarrasing story to tell my teacher and explained Felicia had told Mikey my dream about Mikey and I walking through a field of butterflies together, because obviously that's the other way you make love.
The next day, resolved to my new reality, I asked my mother to dress me in my most fancy blue lace dress. Obligingly she did. I approached Mikey at recess with a lump in my throat and my heart thudding. He was playing alone in the sandbox. I gingerly tapped him on the shoulder and asked if I could join him. He nodded his head and my heart leapt from my chest. He loved me too! I plopped down next to him and cooed we were going to have so much fun making a sand castle to play house in together. With that he turned towards me, looked into my eyes, and proceeded to pour his full bucket of sand directly onto my face. I screamed in pain as the grains gritted against my eyes with every blink. Every teacher within earshot came running to my aid and whisked me off to the bathroom to wash my eyes out. From that day on I avoided the sand box at all costs.
Mikey, in the end, really gave me a great gift. He gave me the perfect metaphor for relationships and love. Don't go all in too fast or else your face will get dumped all over. It's taken me years, and years, to finally accept this lesson. My parents, my grandparents, and my great grandparents all have epic romance first sight type love stories and I always assumed I would experience the same. I assumed so much that even the first boy who ever made eyes at me from a distance at Disney World was "the one". It only lasted a minute, but it was the minute of a lifetime. I spent the entire afternoon sulking at the fact I would never be reunited with the one who I was meant to be with forever. My mom even asked why I look like I had lost my best friend. On the inside I said, "You will never know, mom, you will never know..."
However, I've learned my first sight love story is not to be with a man, but the first person I look at in the morning everyday in the mirror, myself. It wasn't dawning my most beautiful blue lace dress, or becoming a lifeguard model in Hawaii, or even my tonsil hockey skills that made me fall in love with myself. It was when I was at my lowest, sickest, most broken, where the only person in the room with me, was me. The only person I could depend on rally my strength to survive, to nurture my aching limbs, and to be patient with my weeping, was me. Love is a choice, an action, and it can be hard to always show love. Growing up my dad would sometimes say, " I love you, Ali, but i sure don't like you right now." It can be easy to be hard on ourselves, to dislike certain things about ourselves, and to be so critical of ourselves. The hard part is finding ways to love ourselves even when we're not in the mood to like ourselves. My sister shared a wise notion with me, "See yourself like you are five years old again, and love on that self like a parent would,"
As a person with T1D and its many complications it's easy to look at myself and think, "Who could ever love me? Who wants this burden? Who could I ever be good enough for?" A good friend of mine says to me often, "This Charcot of ours weeds out the weak." and that is precisely what all of our not-so-perfect attributes do. And yes, everything about you is an attribute, there are no faults. They not only weed out the weak, but give us the opportunity to scoop ourselves up and carry ourselves to our own happy ending.
There is a dating app called Settle for Love. I am dying to try it out just so I can read everyone's profiles. I really loathe the name of the app. I think it should be called "Accepting Adoration" or "Real Romance". Supposedly it's just like a typical dating site i.e. Match.com or eharmony but what makes this app unique is you include all of the bat shit crazy stuff no one usually learns about you until after you've moved in together and slept in the same bed post Mexican food binge.
I totally know how I'd fill my profile out... and it would be completely in my favorite language, GIF.
First let's start with actual footage of my redemption first kiss with Ricky Hill.
I like to think I play it cool and hide my emotions well. However I always wear my heart on my sleeve.
If you're going to introduce yourself to me, be prepared to go ahead and put a ring on it.
I'm not the type of woman who will offer to split the bill. Not because I don't want to. But because I have absolutely no budgeting skills.
Because of above noted budgeting skills be prepared to spend a lot of money in food and ubers on me if you want to get laid.
In the beginning of a relationship I have absolutely no self control. Wise Men Say Only Fools Rush In is a song I need to learn the lyrics to.
Like, absolutely no self control.
And when I eventually sleep with a man, which is usually way too soon, this is literally me the morning after.
I attribute my fast falling ways to genetics I am the great granddaughter of one of Hollywood's first Western heroine movie stars, Beth Marion. My great grandpa was the original Ben Hur stunt double and personally trained and directed John Wayne in his biggest films. He was the baddest, fiercest, most spirited man in Hollywood and it was my great grandma who tamed and brought him to his knees at first sight.
Being Hollywood royalty I totally believe I deserve to be treated like a queen at all times.
Many men find my need for attention and lavish praise demanding. But if you want me to keep breathing you will do what is necessary..
Lack of attention makes me existential.
And you can bet my phone is filled with "Why hasn't he replied within 60 seconds" selfies.
However if I start getting TOO much attention this happens.
My love for you most likely burns as hot as the sun which means you should be orbiting me at all times. If you're not, I'm crushing inwardly like a black hole.
I wish I could be one of those cool girlfriends who doesn't mind being left at home alone. But if I'm not invited along you'll find me pretending to be asleep when you get home, secretly moping curled up under the sheets, assuming it's the end of everything.
Just don't flirt on social media. I am the daughter of two private investigators and will obsessively stalk any woman's account who is liking your photos or vice versa.
Dramatic spelled backwards is Ali,
And you better be prepared for all of the stories I will have to share with you at the end of the day because I am all about that gossip pillow talk.
If I feel wronged I'll get my teacher voice and finger wagging on.
However, if anyone ever speaks with even a slightly stern tone I retreat like a kindergarten class pet turtle.
But I'm easily subdued with words of affirmation, lots of hugs and touching, and food, lots of food. In the end, I may be a handful, but the bigger the tomato the juicier the splash when it comes to throwing it all out there in the name of love.