My only goal as a writer has only ever been to tell the truth. To be as vulnerable as possible with whatever audience I ever reached - even if that audience was only myself. It was never my goal to write for the sake of entertaining, or to make up insane stories, or even to exaggerate my own story. I don't see a purpose in that. That is not me putting down fiction authors or creative minds of any kind. Those people and their crafts are needed. That's just not my style as a writer, blogger, author, word artist, whatever you want to call what I do.
I find great joy and even greater peace in writing. It is something that has been there for me from my earliest years, and it never required much money or a huge tub of supplies. It's always been my brain and I, and occasionally pen and paper. I've been able to write for the duration of family road trips, and about each individual heartbreak I experienced through my teenage years and even into my adult life. When my parents divorced, I wrote more than I ever had before. When I moved out on my own for the first time, I buried myself in notebooks and colored pens and writing workshops. I felt less alone that way and beyond that, I felt understood. Even if that wasn't the case in reality.
And I've written since May 2022, when I was taken to Urgent Care for the first time after throwing up blood for several hours on end. I've journaled alllllllllllllllllll the ups and downs since then and believe me, there's been a lot of them both. When my doctor first uttered the words, "chronic illness" in my first appointment with him in far too long... I knew I needed to write a book. Right then, right there. And surprise, dear reader, that is exactly what I am doing now.
I am writing a book that will not be easy to read. Sometimes the truth is the hardest thing to write, and reading it won't be any easier. I can promise you a whirlwind of emotions as I take you through the journey I've been on (and still am on), and one of the most notable is joy. Joy is what I've chosen to focus on through the hospital stays, blood draws, surgeries, sleepless nights, lab tests, radiation, CT scans, cardiology appointments, ER admissions, trips to KU Med, etc.
Why? Because being sick, or at least being chronically ill, is more than a full-time job and it can so easily crush your spirit. In my case, it stole some of what is supposed to be the best years of my life -- my mid 20's. And while I do feel robbed of that, I also am more grateful than I have ever been. So many friends, family members, friends of family members, family members of friends, teachers, doctors, donors, you name it... have shown up for me every single day. I will likely not be able to ever repay them, so the least I can do is thank them in a book, written with care, by the version of me that they wanted to see stay alive and well.
If you are suffering with chronic illness of any kind, or you've ever had it happen to someone close to you, I want you to know a few things. The first and most important is that it absolutely does not have to rule your life. It doesn't dictate how strong or brave you are, and crying is more than okay. The effect that physical ailments can have on the brain is so extreme, and let's just be honest here... CHRONIC ILLNESS IS SO. FREAKING. HARD.
It's horrible to wake up and have to stick yourself with needles every day. It's horrible to have to spend hours on the phone collecting fax numbers, asking about record requests, asking endless questions, waiting for callbacks, trying to manage prescriptions, having to constantly check emails and voicemails for results, etc.
For me, one of the hardest parts has been not being able to go to work. I was put on medical leave, by choice, in the beginning of May of 2023. The number of hours I was starting to have to miss because of doctor visits and surgeries became a problem that my company couldn't keep allowing and I can't blame them. And I'm not sure you've ever been in a position where you needed to take six months off of work for your own health and safety but if you have... you know it's not the vacation that so many people see it as. Countless times, as I would tell people that I was on medical leave for six months, they'd look at me with jealousy. "Hey," they'd joke. "Look on the bright side! You get a six month vacation! I wish I could get that!" and every time those words, in any form, were spoken... I wished harder that I could just punch those people in the face.
Has it been nice to have six months to focus on nothing but healing my own body? Absolutely. Not having the added stress of full-time employment in addition to my chronic illness has saved my life multiple times by now. But in all honesty, I'm making a little under half of my normal pay and that's a hard hit to take when your (almost) daily appointments cost $20-$50 a trip and you have to drop about $25,000 for a hospital stay that didn't even help you towards a diagnosis. Plus travel, to clinics that the doctors SWEAR will help you... only to get there and hear those doctors tell you that they have no clue what to do. Plus medication, so an average cost there of about $200 every 2-3 weeks.
You guys. I promise you, this is no vacation. My mental health has dropped because I can't go to my job. I can't wake up everyday and clock in to start helping people. I don't get to see my coworkers, and I miss the conversations we'd have and the jokes we'd share to pass the hours. I don't get out into the world every day the way I did when I was working, and I miss that routine so deeply. I miss work emails. I miss creating spreadsheets. I miss hard-earned paychecks and weekends of relaxation. I genuinely love what I do, and I guess the price I'm paying now for that is that I have to take care of myself before I can get back to helping others.
Real talk, chronic illness is the worst thing that has ever happened to me and I wouldn't wish it on my worst enemy. It's hard on the person suffering. It's hard on their families, friends, coworkers, caretakers, employers, doctors, nurses, care teams, pharmacies, you name it. It's hard emotionally, physically, financially, spiritually, and it has definitely taken parts of me that I wish I could get back. I know I will, someday, because even if it isn't for several years I know that somebody somewhere will have what it takes to get me back to being my normal self. The waiting is just... rough. Especially because as I said, I'm in my mid-20's and can't help but be angry that I'm spending these years in hospitals and care centers and living as if I'm 90 instead of 25.
That will change. That's the joy, creeping in again when I need it the most. The important thing is to focus on the idea that someday, this will be a story from my past instead of part of my daily existence.
I can't wait to share my entire story with you sooner or later, in my book when it comes out and I am full of hope that you will allow me to send you a copy or two. I think beyond sharing just what has happened to me, what really drove me to write the book was the idea that I could help people by writing it. I could write the words that save somebody from the monsters of anxiety and depression when they find themselves in hospital gowns and ambulances and never getting any answers. My hope is that this book will instill hope in patients who are at the end of their rope, and provide some insight for caretakers and families of those patients who find themselves lost and confused in the disaster that chronic illness is. To be able to help people through my writing is a dream, and I guess I feel like that's the best way I can help myself right now, too.
Stay tuned, the book will be here soon. I love you, please don't forget your power.
The book is to be released soon.
Thank you to, (and this list is inconclusive):
Wesley Medical Center
Wesley Infusion Center
Kansas Gastroenterology, Doctors Estephan Zayat, Winnie Sheu, Lauren Zogleman, Heather Lappin
Wichita Family Medicine Specialists, Doctors Constance and Steven Davis
University of Kansas Health Systems: Doctor Naziir Talaat, Christopher Sirridge, Kimberly Liang, Zachary Collins
Cancer Center of Kansas: Dr. Pavan Reddy
Arthritis and Rheumatology Clinic of Kansas: Dr. Melanie Rohr
Heartland Cardiology: Dr. Shilpa Kshatriya
AFC Urgent Care Team
My parents, step-parents, siblings, coworkers, bosses, friends, dogs, cats, yes I've turned into someone who thanks her cats. Judge me.
Jokes aside, thank you. I can't wait to share this part of myself with you.
xox
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