Over the past eight months, life hasn’t exactly panned out the way I thought or hoped. I know I’ve posted on social media little things here and there, but it’s all been rather cryptic, and for that I’m sorry.
For the sake of full disclosure; I never imagined things dragging out this long, or the issues that arose affecting my life as much as they have. I wasn’t waiting to make a grandiose announcement of something going on, or trying to garner any suspense or attention (trust me. If I wanted the attention I’d do something much more interesting like get married, or move back to New York, or even create the perfect little black dress). In reality, I was hoping that whatever this illness was…is…would become obsolete, so insignificant, and no longer a part of my life. But, here I am eight months later, ready to talk about what has been going on in my life.
I don’t know if I’m writing this to explain myself, if I’m writing it to try and document this time in my life, or if it’s just all part of some kind of catharsis. Either way…. here I go, laying it all out on the table:
Eight months ago if you would have asked me what I’d be doing today, I probably would have told you that I recently came home from Spain, had this whole new outlook on life, was finishing up college and working, and maybe even hoping to throw in a vacation or two.
No one would have guessed this would be the life I’m living. Clearly not the life one should live at any age, but particularly a seemingly healthy young woman in her early 20’s who was working two jobs, balancing school and a social life, and making it to the gym daily.
To say I was in my prime was an understatement; I was living the life I’d always wanted.
Basically, this illness hit me like a truck.
I could have never imagined that a few weeks after returning from the trip of a lifetime (okay, the best trip of 2017), that I would come down with this debilitating abdominal pain. It wouldn’t have crossed my mind that I would be left with severe nausea and a lack of appetite, and that it would have me sleeping an upwards of 12 hours a day… yet here I was.
After being convinced by my parents and best friend to see the doctor, I did. You know, it’s never reassuring when they call you to come in for more testing and blood work the following day.
In that moment, I knew there was some sort of a journey ahead.
To save you from the extensive details; I spent the following months with many diagnosis– from cancer to liver failure, and everything in between, being thrown around.
Let me tell you, there’s nothing worse than something being so wrong with your health that they can’t identify it. When the doctors tell you that they could write studies in medical journals about you, if only they could figure out what was wrong…It’s not reassuring.
In the past eight months I’ve had awful IVs put in, countless tests, emergency surgeries and procedures, and long hospital stays. It’s comical in some ways, but you know it’s bad when the nurses and doctors become your friends.
I think this is supposed to be the part of the story where I tell you what actually has been wrong… believe me, I so wish I could. As of right now, we still don’t know. All we know is that there is a lot going on, which is causing me to be very ill and my body to fight back with vigor. All we know is that another day awake and out of the hospital is a better day than the last.
So maybe this explains a bit as to why I’ve said so little these past months. How are you able to express to others that there’s something going on in your life when not even you knows what’s going on?
I write this all, and still feel like there’s things left unsaid. I write this and somehow feel like this weight is off of my shoulders, because finally I have an outlet for what’s going on and I’m not just crying into the void (well… It’s a blog so maybe I am, who knows).
I don’t ask for sympathy or even empathy, really that’s not why I’m putting any of this out there. I’m writing this because being being really sick is scary, and lonely, and sometimes it feels like there’s no light at the end of the tunnel. I’m writing this because there’s only so much kvetching my parents and best friends can put up with (thanks for everything guys 😙). And I’m writing this because putting my experience down may help someone else feel less alone.
But also, if I am actually going to be an advocate for Turner Syndrome, and really try to spread awareness, I have to show this part too. The raw unedited part that is sick and hasn’t been able to attend school the past two semesters. The part that breaks down terrified of what tomorrow holds. It’s not all strength and fearlessness, sometimes it really is faking it to do what you have to.
I’ve learned a lot these past eight months; most of it being that those who matter stick around with you in the face of adversity– Family, friends, and faith can be the largest pillars of strength. Beyond that, I’ve also learned that sometimes, when you feel like you have nothing worth fighting for, you have to create that will and continue to fight with all your might.
So, here’s what I can leave you with–
To every person who has dealt with or is dealing with a chronic illness: I see you. You’re fears and pain are valid, and you are stronger than you know, but it’s okay to be as weak as you feel.
To every parent who has advocated for their ill child: you are valued more than you know. Whether we can say it or not, we appreciate your sacrifices and the strength and persistence you have to show on our behalf.
To all the family and friends that stay by our side: Thank you. You’re what actually gets us through.
To everyone who needs to hear this: There can be a beacon of hope and something to keep you going if you want it hard enough. Never give up the fight.
Here’s to another tomorrow.
Oh sweet, honest, articulate, courageous girl ! I read, then reread, then took a deep breath and sent love and energy in your direction. Knowing you and your story adds another layer of affection and admiration for the “kid” you are and the woman you’re becoming.
Hang in there sweetheart, there is an answer, I just believe it to be so!
Love you so
Thank you Aunt Linda, not only for making me smile, but always being a huge support and pillar of strength. I love you!
Oh, my love. I’m so sorry you have been going through this. I’m so sorry I haven’t been in touch because of my own issues. Please know you can text or call or message me anytime, but also don’t feel pressure to do so, because I know sometimes it just seems incredibly overwhelming to be social on top of everything else. I love you, little sister, no matter how much we do or don’t talk. Always <3
Big Sib!!! You truly are the greatest. We’re both going to win these fights and come out on top. Love you dearly and always here for you!
WOW. This really moved me…. And is also my worst nightmare. I have 2 children with cronic illnesses (Crohn’s disease). It’s exhausting to always be advocating for them, worrying about them, and of course supporting them and keep up a strong front.
I have friends and family who seem to live full and happy lives with this disease but I still WORRY.
Thanks for sharing. I hope you get answers and feel better REALLY SOON!!!!
If I’ve learned anything watching my mother deal with me, worry as a parent never seems to end. Just know, as kids, we appreciate it and need you.
I’m always here for you guys if you need anything, and thank you for being here for me!