“When I was 18, I had my whole life ahead of me. I was a freshman at my dream college, making friends, and discovering myself. I was very active and always played multiple sports. I was strong and healthy.
One afternoon, I went to work out at the student center gym. I did a quick 20 minutes on the elliptical, nothing I hadn’t done hundreds of times before. I walked back to my dorm and sat down at my desk to get some studying done. After some time, I stood up to walk. Only I didn’t. Instead, I fell to the ground with incredible pain in my back. I knew something was terribly wrong.
I called my mom and she came and took me to the hospital. I didn’t have a clue what was happening, and looking back, I’m not sure what I thought it was. An MRI showed I had herniated the T12/L1 disc in my spine and it was compressing 60% of my spinal cord. My doctor explained it was a rare occurrence to happen to someone that young and in that location of the spine without direct trauma. It was a freak incident. The pain was unbearable, it was a constant burning ache in my spine. I then began to lose function of my legs, so I had to have surgery repair the injury.
Initially, the surgery was successful. But after two weeks, I was again one of the exceptions to the norm. There was a complication, and I contracted bacterial meningitis, which only occurs in a minuscule 1% of spinal surgery patients. The evening after my two-week post op check-up, I got the worst headache you could possibly imagine and I began leaking spinal fluid out of my surgical incision; it soaked through my sheets.
We called the doctor and were told it wasn’t concerning, but it was. I went to sleep. When I woke in the morning, I was very ill. I couldn’t lift my head, my body was weak and my vision was so fuzzy. My neck and head hurt so badly; I was crying and confused. I just remember this moment where my mom just went into action. It was the moment when she knew how serious it was. She calmly called 911 and within minutes the ambulance arrived. She explained everything to me and for me. She spoke for me when I couldn’t. If she hadn’t had her training as a nurse and recognized the symptoms of meningitis, I probably wouldn’t be alive today.
I don’t remember a lot from the month and half I stayed in the hospital, other than the indescribable pain and suffering. I was in and out of consciousness. I was confused, angry, and screaming in pain when I was awake. There were nights my doctors didn’t think I’d make it through, and my parents were told they needed to prepare themselves to lose me. I was leaking spinal fluid everywhere and the surgeries to attempt to repair the leak were unsuccessful. I laid in the dark with my head no higher than 10 degrees for weeks, in pain that was beyond excruciating.
I don’t remember a particular feeling of hopelessness necessarily. I just remember the urge to fight. I was literally angry and irritable at points, but I think it was all of my excess will overflowing out of me, desperately trying to keep fighting off what was trying to kill me. My mom and dad barely left my side for weeks. My brother celebrated his 12th birthday in my hospital room. Family flew in to help my parents with my siblings. I’ll never understand what those weeks meant to my family, and what they went through, watching me.
Eventually, the leak stopped and I beat the infection. I began to recover and a few weeks later I was discharged from the hospital with in-home nursing care and physical therapy. We didn’t know if or what permanent damage remained yet. Within months, I pushed myself to return to school full-time. I was determined to finish my degree and move on with my life. It was hard to adjust back to life afterwards. Everything and everyone carries on and your world has stopped. I knew how close I was to losing my life and I found it hard to relate to a lot of my peers. I knew my life and my body would never be the same.
I then transferred to the College of Charleston and tried to live the carefree college beach life. I enjoyed school, completed internships, and worked for a local non-profit arts organization. I was well on my way again when the back pain returned. I required a spinal fusion mere months before I was scheduled to finally graduate. I had no choice as my spine was bending in half at my injury site. It was another setback, and not a small one.
I needed eight titanium screws and two rods implanted in my spine, but I was determined to not let it stop me. I had several friends come see me in the hospital; they were mostly shocked at how grueling the recovery was. In the weeks afterwards, a group of my fellow artist friends checked in on me often, sending me mail and calling. Once I was back at work, the support was amazing and I was so glad to be back with the people that cared so much about me.
This time, things were different. I woke up from the fusion surgery crying in relief from the pain I had been experiencing. I again recovered quickly, spending my time creating art, exercising, and taking care of myself inside and out. I went back to class, and by the end of the year, I walked across the stage to finally receive my college diploma.
Around that time I also met my husband while I was wearing my huge TLSO back brace, no less! The back brace was a custom-made clamshell contraption that went from the bottom of my neck down to my hips. I would strap the plastic back onto the front and quite literally felt like a turtle. We got married, started a business, and a family.
During these years, we began to identify just how much damage had been left behind from the injury and infection. My symptoms weren’t always visible. It was tough to look normal on the outside but feel so awful on the inside. Daily migraines, dizziness, fatigue, nausea, pain, weakness, not to mention the anxiety and depression that came along with all of that. I developed tremors and problems with my gait and balance. Every week seemed like another trip to specialist, physical therapist or some sort of testing.
I feel like invisible illnesses are out of the minds of so many people, that it’s hard to imagine someone suffering in such a way when they otherwise look normal. For a long time I didn’t discuss my illness because of the lack of understanding from other people. My main sources of support were my family and care team. It wasn’t until I started opening up and sharing what I went through and still deal with health-wise that I really started to feel understood. Others have come to me and thanked me for being so bold, because surprisingly, a lot of people have chronic illness and sadly don’t feel comfortable or supported in talking about it.
I was eventually diagnosed with an additional motion disorder and vestibular migraines, along with more than a dozen other symptoms and conditions. Now, with the help of medications, physical therapy, mobility aids, and a lot of doctor’s appointments, I optimistically joke my health is a never ending wave I just have to ride.
I’m now in my early 30s. I’ve become a mom, wife, author, artist, and so much more than I ever thought I could be in spite of my illnesses. I’m proud of and grateful for who I am and what I’ve been through. My experiences have helped me learn so many things about myself, other people, and the world at such a young age. My journey has taught me I am strongest when I embrace myself, and rely on my inner strength in knowing just who I really am, and what I’m capable of.
My health has also shown me I want to help others feel less alone in their journey through life too. I want to help change the perception around what it means to be a modern woman with a chronic illness and cultivate empowerment, education, accessibility, compassion and understanding for all. Living with chronic and mental illness can be incredibly isolating, and sometimes just knowing someone else understands can help. I use my skills as a writer and marketing professional to help create opportunities for other remarkable people to share their stories, and as an artist, I express my own personal experiences through my work in hopes it resonates with this message, loud and clear: everyone is valuable and deserving of love, no matter their journey.”
This story was submitted to Love What Matters by Katie Thompson. You can follow her on Instagram here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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