Where do I even start with Elise? I'm so grateful for this girl. When I emailed friends during the summer to let them know I was starting this blog, Elise was the first one to reply back to me and volunteer to share her story. We didn't know each other that well, but she spent two hours on the phone with me talking about everything from Jimmy Fallon to Jesus. She is one of the strongest, most courageous people I know, and I know her story will touch many. Thanks for sharing your heart, Elise. — M
I moved to New York City from Texas about three years ago and fell in love with it. I had visited all throughout high school and knew the city like the back of my hand. I knew it was dirty and messy and hard. I knew what I was getting myself into, but I wanted to invest in this place. I found a great group of friends, really plugged into a church, and I was in a really good spot with the Lord.
I remember thinking that I never wanted this season to end because it was so wonderful. I worked 10-hour days, would go on a 4-mile run after work, and then meet up with friends, no problem. I lived a very New York lifestyle. I was literally living the dream.
And then life changed drastically.
It was April 2013, the first day after a long winter that it hit about 55 degrees. I went to Central Park, laid my towel down in Sheep Meadow, and read. It was wonderful.
After this, I noticed something on my leg, and I honestly thought it was just an ingrown hair. It stayed there for a while, so I assumed it was a spider bite. Almost two months later, that bite was still there. My mom, a nurse, also thought it was a bad spider bite.
By June, though, I felt very sick and very tired all the time. I honestly thought I was burning the candle at both ends. Oh, I'm just doing too much. I need to rest more.
I visited my primary care doctor to test for vitamin D deficiency. The test came back clear. The doctor patted me on my back and sent me away. Each week, new symptoms kept appearing. Every Friday I could tell a difference between my last Friday. I would get numbness and tingling in my hands and feet. The next week I would have trouble walking in a straight line. Sometimes I would walk down the street, veering left and right, like I was walking on a cruise ship. I would have this thing called air hunger—trouble breathing and having a full breath—and that’s when doctors started getting worried.
So I saw a neurologist in Texas, who conducted a bunch of different tests. They thought it was MS for a long time. After four or five months of not knowing what was wrong with me, I began praying I had MS. When my MRI came back clear, I broke down in tears. I simply wanted to know what was going on with me.
Every doctor said I was the picture of health. But fall of 2013 was a blur of different ER and doctor’s visits. A pulmonologist. A cardiologist. A rheumatologist. No one could figure it out. I felt helpless.
At this point, I was angry with The Lord. What is happening to me, God. November rolls around, and I am a hot mess. Tired all the time. I can barely finish a full day of work. Yet I could throw myself onto the subway, put on makeup, and people thought I was okay. A lot of doctors said I must have anxiety or be too busy. I assured them it takes a lot to stress me out. I was always known for having it all-together. But this time, I was falling apart.
I went home to Dallas that Thanksgiving. While riding in the car with my mom at one point, everything went dark. Like a bolt of lightening hit me. I suffered a seizure or a mini stroke. The best of the best doctors in NYC and Texas still didn’t know what was going on. They thought it was psychosomatic.
When I flew back to New York City, I almost passed out on the plane. An ambulance had to get me in the middle of Newark Airport. It was terrifying. That’s when my mom flew up. Our last-stitch effort was to visit an infectious disease expert. I had all these blood tests done, and the doctor said it looked like my body was fighting off something but it was gone now. He sent me to a psychiatrist. My doctors were passing me along to one another because they had no idea what was going on.
“I remember walking around the Upper West Side, taking in the New York City Christmas scene and thinking this was going to be my last Christmas.”
By Christmas, I decided I needed to move back to Texas, attempt to figure out what is going on. I remember walking around the Upper West Side, taking in the New York City Christmas scene and thinking this was going to be my last Christmas. I am really thankful for my 24 years. It’s been a fun ride. Now it’s time to exit this season in peace.
I remember walking and almost thinking I was going to be hit by a car, so it would be quick. It’s such flawed thinking as I look back. But I was so sick. Everything felt so hard, and I didn’t think I could do it anymore.
Once I moved home to Texas, I was determined to get answers. I researched and narrowed down my symptoms to MS and lyme disease—and I already knew it wasn’t MS. I thought of that bug bite I got back in April. And the more I read, the more I learned how lyme disease testing isn’t reliable. The guidelines for testing haven’t been reviewed in years, insurance companies don’t want to pay for it, other companies are lobbying the CDC. There are all sorts of investigations and politics at play. I thought, Whoa I don’t want to do this. What am I getting myself into?
I felt like the Holy Spirit was telling me, This is my way, walk in it. I had this very clear, quiet sense of knowing what to do next.
I saw a chronic disease doctor in Dallas and told her my whole story. She believed it was lyme disease. By this point, I had lost 10 or 15 pounds in three months. This doctor just looked at me and said, “You’re too young. I will be at your wedding day. I refuse to let this take you.” She prayed for me; she wouldn’t give up on me. She was a godsend.
“The Holy Spirit was telling me, This is my way, walk in it.”
This was when I decided to start long-term antibiotics. In terms of treatment, antibiotics are controversial. My own family was divided about what my next steps in treatment should be. But I knew I had to try antibiotics to survive.
I felt so alone, like I had this mystery disease and no one really knew how to treat it. I felt abandoned in a way. A lot of my friends didn’t know how to handle it, and it’s my fault, too, because I didn’t know how sick I was. I thought I would go to Dallas, fly under the radar, and not let people into this really scary and controversial part of my life.
But I needed community and joined a women’s group at my church in Dallas. These girls faithfully prayed with me through everything. I kept thinking, God where are you? Yet His hand was in all of this.
My body was too sick to handle the antibiotics, and I went on a natural protocol. That spring was like a spring of my soul; slowly, I started to improve. At the same time, I found myself in the middle of this heated medical debate: Insurance companies like to say lyme disease doesn’t exist, and doctors get in trouble for prescribing long-term antibiotics for a disease that a small percentage of people think don’t exist.
I thought, Okay, Lord, if I can get even an ounce better, I want to use this energy and this story to speak for those who can’t speak for themselves.
With that in mind, I returned to NYC in May of 2014. I began sharing my story and got involved with the biggest lyme nonprofit in the world. I was really scared about being vulnerable and people thinking I'm crazy. The Lord has been so faithful in that, helping me to use my story to glorify Him and His people, to fight for the rights of the marginalized.
I’m finding beauty in trusting that my identity is in the Lord. I want to do whatever He’s given me with excellence. I’m used to being a New Yorker, where life revolves around what I do and getting crap done. And as a Texan, the mantra is pull yourself up by your bootstraps and get it together, which is so not the gospel. We women think we’re supposed to have it all together. To be educated, stylish, fit, and have great careers. We value strength and independence and achievement.
I began antibiotic treatment that October. I really wanted to make New York work, to a fault. I am stubborn. Come May of 2015, in the midst of heart palpitations and passing out on the street, I knew I needed to be somewhere else in order to heal. I returned to Texas.
People will tell me that I seem so joyful, so I must feel great. But really it’s because I have a source of joy that’s greater than me—the one constant in life I know I can rely on. Jesus is the same yesterday, today, and forever. Even when friends or family or doctors fail me, I can turn to the one who has never failed me and will never fail me.
This is my portion that has been given to me. I am constantly saying, Okay, Lord, how can I fight this well and with courage?
“I have a source of joy that’s greater than me.”
It’s okay to not be okay. It’s okay to cry and be vulnerable. We don’t have to have it all together. Let’s have grace with ourselves. God has been showing me what I consider to be good and what He considers to be good. I understand now that what really matters is who I am in Him and trusting God with the rest.
With the Lord, there are ups and downs. Like any relationship that is worth fighting for, you are going to have those moments when you’re angry and frustrated. I have felt a lot of anger toward Him. For the longest time, I would just run away. Now I know that instead of disengaging, I have to constantly wrestle with Him. The best people we’ve known throughout history have experienced loss, suffering, and defeat.
Currently I am home in Dallas. Doctors say it could be 6 to 18 months until I’m in remission—or longer. I've realized I can’t do this on my own. I need Him. God is sovereign, and He sees the big picture. He is the one who gives me joy and strength. He has got this.