Nursing student shares journey to wellness : “The Impossible Made Me Who I Am”


Jenna at Garden of The Gods, July 20th, 2019

Jenna Agan , Photographer

Pick up the leg. Put it down. Bear weight on the leg. Bend the knee. Start to pick the leg up. First bend the toes, then the ankle, then the knee. Swing the hip of the other leg ahead of the other. Then repeat. 

Most people do not have to think about the mechanics of walking; it occurs naturally. This easy process of locomotion became arduous when I was forced to learn to walk again. I had lost my ability to walk due to Complex Regional Pain Syndrome (CRPS), which is a rare nervous system disorder that has caused me to have chronic pain in my left knee. My own struggles of relearning how to walk have taught me to be a better person and impacted all of my life decisions.

Jenna at Garden of The Gods, July 20th, 2019

One small moment that has had a lasting impact on my life is the first time I started walking on my own again in August of 2019, when I was 16 years old. It was amongst the breathtaking scenery of Garden of The Gods State park that I was able to take my first timid steps on my own, with no assistive devices like crutches or a cane to help me with my CRPS. This was the first time I had walked on my own for a prolonged period of time in almost two years.

During this period of my life, I had to think through each step of walking just to get myself to get one foot in front of the other. I had to focus and think about each movement. Slowly, I could think less about my body mechanics of walking and it became more natural to do it on my own. Each step I took on my own gave me more power, and self confidence that I could now achieve anything. 

Jenna and her sister at a restaurant in downtown Chicago after Jenna’s physical therapy, July 2018

As the feelings of pride engulfed me, I gazed at the breathtaking beauty of the park, ready to step out and explore it. I felt so free, not having to worry about the constraints that my assistive devices and pain had brought me. I stepped onto the reddish orange colored trail, hearing the crunch of the gravel under my feet. The beauty was so picturesque it was almost unreal. I was no longer chained to the pain and assistive devices that had held me back from my life. With no assistive devices, I did not have to worry about the ground being even enough for me to be able to tread upon it with my crutches. 

As I walked along the trail winding through the massive rock formations, I was able to actually hike and enjoy the beauty up close instead of having to admire it from some distant overlook that was handicap accessible. The cement-gray sky with puffy popcorn clouds spat raindrops onto my face as I stood in the wind. Small rays of sunshine beamed through like pillars reaching down to give the earth the sun’s power. As the rain storm waned and the thunder grumbled farther away in the distance, my sense of elation grew and blossomed. I was so profoundly proud of myself; I was finally walking on my own. For me, the passing storm and triumphant sun’s rays I experienced served as a metaphor for what I had gone through in my struggle to walk again. 

I walked further along the path, breathing in the damp earthy smell of soil. As I breathed, I was overcome with a sense of calm and peace. My chronic pain from the CRPS was dulled by my excitement. 

Walking with a newfound sense of power, I started to climb some low rock formations. I set my sights on a five-foot-tall ledge, which I wanted to perch upon. I cautiously took the climb one step at a time, grabbing onto the rock protrusions and crevices. I could hear my boots scuffing against the rough gritty rocks like sandpaper against wood. My mom cautioned me to be careful because she was scared I would fall. I managed to clamber up onto the ledge and stopped to pose for a photo. The CRPS– which had caused me to lose my ability to walk and consumed my life– could not ruin this moment. In that moment at the Garden of the Gods, walking on my own for the first time, I was able to seize my life back from this disease that I had battled with so hard. 

Believing in my own abilities and walking with a newfound sense of power had a tremendous impact on my life decisions going forward. During the past few years, I had lost my ability to walk, I had lost friends, fallen behind in school, and my illness was starting to strain my family. I had to push through challenges I never thought I would encounter. In March 2018 when I had just turned 15 years old, I started to feel like my left knee was badly bruised and wasn’t getting any better. Little did I know that this was only the beginning of a lifelong illness, a rare nervous system condition.

After many doctor appointments, I was finally diagnosed with a rare nervous system disorder called Complex Regional Pain Syndrome (CRPS). The Mayo Clinic defines this disease as, “a form of chronic pain that usually affects an arm or a leg. CRPS typically develops after an injury, a surgery, a stroke or a heart attack. The pain is out of proportion to the severity of the initial injury. CRPS is uncommon, and its cause isn’t clearly understood.” (Mayo Clinic 2020). There is no cure for CRPS. Even though CRPS has taken a toll on me, it has also changed my life for the better. 

Jenna at Garden of The Gods, July 20th, 2019

The chronic pain in my knee caused by the CRPS can get to be so excruciatingly painful that I am unable to do much of anything. The pain feels like the ache of a broken bone and there is a sharp stabbing pain going through my knee like someone is driving a knife all the way through it to the other side. This happens while my knee feels like it is burning. The burning feels like I am on fire with the flames engulfing my knee. According to the National Institute of Neurological Disorders and Stroke, “People with CRPS have changing combinations of spontaneous pain or excess pain that is much greater than normal following something as mild as a touch. Other symptoms include changes in skin color, temperature, and/or swelling on the arm or leg below the site of injury. Although CRPS improves over time, eventually going away in most people, the rare severe or prolonged cases are profoundly disabling.” Although the pain from this condition was absolutely crippling at first, I have learned ways to cope with the pain. The pain is constant but will fluctuate and get worse if I overuse my knee, or sometimes it can get worse from something as little as something brushing my knee. I have gotten better at dealing with this condition over time, but there is still no cure. 

I went through months of intensive physical therapy, occupational therapy, and other doctors appointments. This was three times a week for the whole day. I was constantly at doctor’s appointments and exhausted from the pain, so I had to do home school and had little energy to interact with my friends. Most of my friends did not understand what had happened to me and thought I had just “disappeared”. I ended up losing a lot of friendships during that time because my friends thought that I was ghosting them. This impact on my social life followed me throughout high school. Losing my friendships in high school forced me to develop my social skills at a higher level, and to seek out healthy friendships and cherish the friends who stuck by my side.

Before my illness, I had wanted to become a photographer. After being at all those doctors appointments, however, I spend a lot of time with medical professionals. I always loved how nice and helpful everyone was, but I noticed the hard work of the nurses in particular. One of the nurses called me by my nickname Little Bird, which caused me to realize that I wanted to make an impact on people’s lives, which led me to the nursing field. Without the help of my treatment team at the Shirley Ryan Ability Lab, I may have never walked again; I have always been independent and hesitant to seek help, but now I know it is okay to reach out. I still have days when the pain is worse than others, but I don’t let anything hold me back.

Jenna in her O.C.C student N.A. Uniform, October 2021

I will always remember and cherish the empowering moment of walking on my own again amongst the breathtakingly beautiful landscape of Garden Of the Gods and the positive trajectory it has put my life on. I am now in the thick of my second year at Oakton, studying down the path to becoming a nurse. 

 I have taken the Basic Nursing Assistant Training class at Oakton and I am absolutely in love with the nursing profession. I love getting to know the people that I care for and getting to help them and really make a difference in their lives just like the nurses who cared for me. Walking is something I will never take for granted. Overcoming my Complex Regional Pain syndrome has shown me that I can do anything I put my mind to and that I can help others by being a nurse. My hope is that by sharing my story with others, I can help to inspire them to do anything they set their minds to. Dealing with difficulties may seem impossible, but with the help of others we can get through tough times and accomplish the impossible.