It’s the last Friday of the month, and our last Champion Patient of awareness month. This week, we feature Dalia Chokr. While Dalia is no longer with us to share her story in her own words, some of us who had the honor to call her a friend have gathered some thoughts and stories to share.
I haven’t been able to find the words to truly emphasize what she meant to me, and to so many of us. When I found out Dalia was gone, I did the only thing I could think to do. I ran. I ran on this cold, damp day with tears falling fast. Not long ago you and I were talking about life, illness, and you were encouraging me to keep running. Today, I ran for you. Tomorrow, I will run for you. I will continue to run for you. No matter how tired I am, how tough it gets, how much it hurts, I will continue to fight because you never gave up.
There isn’t any amount of consoling that can make this better. Death is final, and words just feel empty. A selfless, beautiful soul has been taken from the world WAY before her time.
In the online community of those dealing with chronic illness, you were the center. You were the glue that held us all together. No matter what you were dealing with, you always went out of your way to help others. I will forever remember our chats, your advice, and what a FEARLESS WARRIOR you were. The world may have lost a valuable voice, but we all gained an amazing guardian angel. This year has been great with loss in our communities, and I encourage each and every one of you out there to hug your loved ones tighter tonight. Tomorrow isn’t promised to any of us.
Fly high, soul sister. I’m still running for you, and I will continue to for as long as I can.
I don’t have the time or the vocabulary to accurately describe who Dal was to me. In short, she was one of the best friends I have ever had.
We helped each other through a lot from the day we met.
A couple months after the first fundraiser I attended, the day we finally got to meet and connect in person, she was running late and I was sitting in the corner of baggage claim at the Detroit airport. I was so nervous, it was like first date jitters. I briefly considered ditching and flying somewhere completely random.
I kept thinking, “what the hell am I doing? I’m almost 20 years old, sick as a dog, going to stay in a house for a week where I’ve only met the people over facetime and briefly at an event a few months prior.”
But the minute she saw me, something clicked. From that moment on, she became my big sister. Now, I have an older and younger brother, and also a younger sister, but I don’t have an older sister. And I don’t have anyone in my family who can personally understand what being chronically ill is like. And although I had my best friends at home, something about this was different. I didn’t know it yet, but her strength would help me survive so much more than just physical health issues in the next 3 years.
I would go into detail about all the times we spent together over those next few years. My 20th birthday, starting Vials of Love, making and selling shirts, spontaneous road trips to Chicago, countless ER visits and planning fundraisers, but like I said, I really don’t have that kind of time.
I want to share with you two specific memories I have with Dal that I like to revisit when the going gets tough. The first was the week of my 20th birthday. We had just started our business and were headed to a conference of medical professionals to educate about the importance of rare illness. Dal liked to say “when you hear hoof beats, don’t just think horses; sometimes it’s zebras.”
That night, at the hotel, we celebrated a conference well done by taking to the dance floor. At this point in our lives, we were both completely fed by IV’s and had a very difficult time remaining upright for long periods of time, but we danced the night away without a care in the world. That whole time I kept thinking, “this is where I belong. I’ve found my place, I’ve found my family.”
That summer, our best friend Sarah and I road tripped back to Detroit for another fundraiser. I don’t remember much of the first few days because I started having seizures that week, but I do know those girls saved my life. I spent some time in the hospital up there and the second I got out we hit the road to Chicago. That was the thing about the 3 of us. If we wanted it, nothing was going to hold us back. We walked around that city for hours and I don’t remember feeling tired or sore at all, although I’m sure we did the next day!
Something about her will, her strength, her ability to know what limits could and should be pushed was something I admired most. She often liked to say that she was determined to LIVE, not just survive, and I sure as hell think she accomplished that.
Of course, I miss my best friend every day, but her memory, her zeal, her strength beats inside me forever.
When Tori and I visited Dalia in Michigan it was a trip of non stop laughter. Even though that trip also consisted of a few hospital visits, the three of us connected that week still over hooking up our TPN together at the same time, filling our meds together, and joking all while doing it. We took a spontaneous trip to Chicago for which I’ll always be grateful for. The three of us walked around that amazing city, visited a firehouse from one of my favorite TV shows, and saw all the sights. Dalia, she was an amazing advocate for Gastroparesis, and did what she could to raise awareness. She was always there for others even when she didn’t feel good because that’s just the kind of person she was.
Dalia was the very first person I met with the same chronic illnesses as me. I remember posting in an online support group and she befriended me right away. She was with me through every step of my journey. From helping me adjust to life as a gastroparesis warrior, to encouraging me to push myself and overcome hurdles I couldn’t have gotten over on my own. Dalia was there ‘round the clock through text messages and phone calls when I got my feeding tube. She walked me through it all. But our friendship didn’t stop at health related things. We bonded over a mutual love for the lead character of a short lived show called Twisted. We put together care packages for each other usually in themes of green or blue, the colors for gastroparesis and dysautonomia (two illnesses she advocated fiercely for). She was there full of love and support when I came out as a lesbian to all of my friends and family and she was among the first to tell me my girlfriend was a keeper. She cheered me on as I went back to college to finish my degree, something no one ever thought I’d be able to do. Dalia was one of those friends who would be admitted to the hospital, sick as can be and still send you a text to see how you were doing.
If you ask anyone who knew Dalia what type of person she was, they’d tell you she was the glue that held us all together- individually and as a group. She created this family of warriors. Not a family by blood, but a family by strength. She was a mentor, a friend, and a big sister to not only me, but to all of us in the chronic illness community. In every way she supported me, she also supported tons of other young women and men battling the same illnesses as her. I always joked she was an “en-sick-lopedia” because she had an answer to every question when it came to chronic illness. She touched so many lives.
Dalia and I met by chance; connecting over shared illness but more importantly, our interests. Suddenly the dark road I was walking alone became much brighter; no matter how dark I felt things around me, her glow always surpassed it. More than our dreams, we were incredibly realistic people; we didn’t sugar coat our bad days and frustrations, we sat with each other in our pain, day or night, simply knowing we weren’t alone.
Dalia fought tirelessly for what she believed in regardless of what she was facing. Impossible was not in her vocabulary and she challenged herself daily to not only do better but be better . Daily her body failed her but she never failed us. Even now, that still rings true. She chose to fight, to educate, to advocate, to find joy regardless of the pain and never ever give up. She choose to live, and my gosh did she ever. To sum her up is near impossible; she was a sister, daughter , godmother, friend, Tia, advocate, educator, artist… none of these, while all so very true, can capture her contagious laugh, her wit and blunt nature; her gentleness with her godchildren, how caring and supportive she was of others starting this difficult journey, how she’d scold me for not bugging her when I was struggling because as she’d say “we’re sisters, it doesn’t matter”, her deep admiration and love of her very best friend, her mother. Gastroparesis drastically affected her life and its quality . Tube feeds, visceral hypersensitivity, TPN, PICC lines and ports…it goes on and on. Each hurdle that came, Dalia faced.
I still cannot describe the immense loss and heart break her passing brought. I didn’t know if I could even do this and write about her. Above all else, she’d tell me to be brave and she’d be right there if I needed her. Everyday I carry her with me; her heart in my heart, my fight is now also her fight. Together we are stronger, we always were.
If you haven’t already, there’s still time to sign up for our virtual race honoring the memory of this young woman. Go to http://www.moremilesraces.com to sign up today!