Walk a Mile in My Shoes

To me this is a no-brainer: when a person has a chronic medical condition that they manage every single day, it does NOT mean they are supposed to stay in bed for the rest of their lives. At the same time, it also doesn’t mean they should extend themselves to the point that they are just making their condition worse by pushing thru pain to be “tough” or “brave.”  Some conditions will get progressively worse if you don’t adjust your lifestyle and take preventative measures.

I speak from experience. I have lymphedema in both of my lower extremities. Most recently, I have been battling what we think is neuropathy. The latter is much more painful to me than the lymphedema, but I’m not even sure what is what when it comes to the pain. All I know is that it hurts terribly.

I enjoy walking. That is one of my favorite stress relievers and a way that I stay physically fit. Gaining weight is very bad for my lymphedema so I try to stay moving, even if they are short now because of pain. Still, I do many things to keep myself smiling and positive because if you don’t have your mental health at the end of the day, what do you have?

Anyone that battles lymphedema or neuropathy knows it is a constant balance between sitting and standing. When I’m having a “bad day” my medical paperwork says I’m supposed to only work for four hours a day, three days a week. If I’m having a “really bad flare up,” I am supposed to keep my legs elevated all day. We all know that’s not feasible when you are trying to work every day and show up for your employer. It’s very stressful constantly trying to play catch-up and run out the door for another doctor’s appointment.

Someone made a comment to me the other day that really hurt my feelings (I cried). In short, they questioned how I could be out and about and yet still be so “sick.”  I have since processed it, and I realize that anyone that questions my pause from teaching does not know my struggles or my story. They do not know medically what is going on with me. For them to assume that I am “supposed to” stay in bed and not go on a walk or do anything fun, well that would also be detrimental to my mental health.

They are not in my shoes. They probably couldn’t even find my shoes on the shelf. If they could, they would know this:

I am constantly worried that I might have an accident because that’s what now happens sometimes because of the radiation to my bowels. It is very common among women like me who have withstood grueling treatments for cervical cancer. It’s a nasty side effect. God Bless Imodium!  Fellow Cervivors and I jokingly say that we need our own diaper bags. We can laugh about things such as bodily functions, but it doesn’t mean it’s fun or funny. It never goes away. We are just lucky to have a sense of humor about it because at the end of the day, what else can we do?

When you ask me to go boating or out to dinner, I worry that I will ruin the fun because my feet/legs will hurt and I won’t be able to even focus on the conversations around me. The pain can make me nauseous and I feel like I want to throw up. Sometimes my eyes will randomly tear up just because I’m so tired of the gig. But the gig is my life so I can’t take a vacation from myself.

When I’m trying to get to work on time, I may seem frazzled when I arrive, It’s not because I’m not trying my best. Some mornings the thought of standing hurts before I even get out of bed because I know what it’s going to feel like when I do. Sometimes I’m changing my clothes at the last minute because I had an accident as I was walking out the door. Such fun! At any random time that you are with me, I’m probably fantasizing about taking a hot bath. There’s something about chronic pain, stress, and physical exhaustion. Bad recipe.

Before you judge me (or anyone!) and try to critique me based on your idea of what a “sick person” does with their lives, try to put yourself in my shoes. You truly don’t know, unless you have lived it. Take a walk with me and let’s see what happens!  Remember, you don’t know my reality until you have actually walked a mile or two with me or next to me. This post isn’t just for my own situation, but it’s for all of us cervical cancer survivors and those with chronic pain or chronic illness who have dealt with the judgement of others.

I’m posting about this, because I’m trying to create awareness and empathy. People are beating cancer much more than they did decades ago. Yet with surviving comes long-term side effects that sometimes become progressively worse with time. Our bodies know the score. When discussing taking a break from work, a coworker said to me, “your body already made the decision for you.” She’s right. It did. And I had to take something off my plate so I could feel better physically/emotionally. I’m taking a knee right now for myself. And no, I will not be staying home in bed in a dark hole every moment of my life. I will keep on living and enjoying this life that I have fought so hard to enjoy. I am a real person and this is my life. Thank you if you are someone that understands. I love you. If you are part of my amazing tribe and you don’t feel you understand, please just ask in a supportive and loving way.

Shawna Christy, 46, was diagnosed with cervical cancer in 2005. Treatment included removal of her cervix, uterus, 1/3 of her vagina and more. Though surgery and radiation helped her beat cancer, “the hard parts came later” – like chronic pain together with PTSD and the emotional, hormonal and spiritual challenges of being a cancer survivor. Shawna plugged into Cervivor for community and support. In 2016 she attended Cervivor School and became a Cervivor Ambassador who uses her voice and her experiences to open conversations and “change the narrative.” She lives in Ottumwa, is a proud mother of daughter (Korynn, 18) and son (Kyler, 16). She is grateful for time with her besties and husband, Allen. This year she is taking time off from teaching first grade to focus on her health to better manage her pain.

Read Shawna’s Cervivor Story or her previous blog “Cerviving with Lymphedema”

See other Cervivor blog posts about lymphedema: “My Under Armor: Do you know about lymphedema?” by Heather Banks

My Social Work Story

Morgan and her closest friends during a “night out.”

My social work story began in 2014 with a decision to go back to school. Little did I know, I was to be diagnosed with cervical cancer during my second semester. The diagnosis disrupted my life and turned it upside down. I was your typical “social” 24-year-old who loved going out with her best friends; a young professional working full-time as a dental assistant; and an ambitious nontraditional student attending school full-time.

Looking back, I really don’t know how I managed it all but in reality, I think it’s what kept me going.  I had something to look forward to in the future and helping people was my reward. Unfortunately, my cancer story didn’t end there. Nearly a year after my initial diagnosis, I was given a second cancer diagnosis. This time it was metastatic recurrent cervical cancer in my lungs. Even though the chemo was heavier and my body was impacted more, I did not quit.

Morgan cuddled up to her dog, Sassy, after a long day of classes.

I finished my treatments and graduated with my Associates in Liberal Arts just two weeks shy of entering the bachelor’s program at the University of Iowa School of Social work. I was terrified that I wasn’t going to be able to retain the information, but I proved myself wrong rather quickly. In the program, we were trained rigorously. We dove deep into the biopsychosocial aspects of humans. We were required to have a deeper knowledge in cultural competence and were faced to see our own implicit biases. After, we would process through as a cohort to understand why and have the opportunity to learn from each other.

Morgan posing with Herky on the University of Iowa Campus in Iowa City, IA.

After two years of a fast-paced program, I graduated with my Bachelor’s in Social Work. Then I immediately entered the Master’s program with the University of Iowa School of Social Work. When I started the program, I had the passion to be a medical oncology social worker. I wanted the opportunity to work with cancer patients and their families. I wanted to give back after getting through my own experience, however, after being in a macro-level program, it shifted my mindset on how I could still work with the population of my choice while advocating and creating change in the cancer community.

            It’s no secret that I fell in love with advocacy and what it is on a day-to-day basis. You see, I found Cervivor and attended a Cervivor School in the summer of 2017. I learned how to use my voice as a patient advocate and it only amplified as I became an educated social worker. It led me to becoming the 2018 Cervivor Champion Award Recipient, the 2019 Advocate of the Year for the Iowa American Cancer Society Cancer Action Network, and the 2020 Advocate of the Year for Above and Beyond Cancer.

After accepting the Cervivor Champion Award at the 2018 Cervivor School in Cape Copd, MA.
Volunteers with the American Cancer Society Cancer Action Network during the Iowa Day at the Hill event in 2019.
Dr. Richard Deming and Morgan filming the award segment for Above and Beyond Cancer in 2020.

My love for advocacy, cancer prevention, and macro-level social work falls right into place within the nonprofit world. We know nonprofits are vital to communities and often help build resiliency skills, raise awareness to specific issues, and make change happen. Social workers are a common thread amongst nonprofits and are community-based professionals. We assess the needs of the communities we serve, identify existing barriers, and develop sustainable programs or resources.

As I am stepping into the Community Engagement Liaison role for the organization, I look forward to serving our community. I intend to emphasize the importance of the word community and what it means to us as a whole. To listen to the needs of our community and bring support, resources, and programming to fulfill those needs. And last, but certainly not least, to continue raising awareness about our greater mission: “Ending cervical cancer is within our reach.”

Morgan is a metastatic cervical cancer survivor, Cervivor Ambassador, and a 3x award winning patient advocate. She lives in Iowa and is currently in the last two months of finishing her Masters in Social Work with the University of Iowa. She continues to advocate tirelessly in hopes her story can help others.