Braille Monitor                         November 2020

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A Note to Motivate Myself and Clarify My Path

by Maureen Nietfeld

Maureen NietfeldFrom the Editor: People who remember the scholarship class of 2019 will remember Maureen Nietfeld. She faces more obstacles each day than many of us will face in a lifetime, yet she does not complain. What follows is a diary and a motivational talk she gave to herself. When a friend saw it, Maureen was encouraged to send it to the Monitor to see if there was anything worth publishing. She did, we did, and now you can benefit. When I read this, I think of the number of pity parties I’ve attended on my behalf and how often I’ve seriously considered giving up. Whatever Maureen may have considered, giving up was not what she did. Enjoy!

I let blindness and many medical problems act as a barrier to my ultimate dream of getting my degree, so in January of 2017, I made the decision that I would no longer let this be. I started going to school at Metropolitan State University of Denver and set my goal to pursue a bachelor’s degree in lifestyle medicine with a minor in pre-healthcare. It was also in January 2017 that a repeat MRI of my brain indicated that I would ultimately need another brain surgery and a treatment of stereotactic radiation. It seemed that my never-ending cycle of barriers was beginning again. I had said to myself that I was going to finish this degree no matter what challenge would meet me in the years to come. My journey began, and the challenges over the next three years were definitely not in short supply.

In February 2017 I had my first round of stereotactic radiation. The doctors assured me that there would be no side effects, and I could go about my life the very next day. Unfortunately, I fell in the 1 percent, and within one hour after radiation my brain began to swell. I had to begin a regimen of high doses of steroids to combat the brain swelling, and for the next two years, due to the brain pressure, I would throw up pretty much every single day. I continued to make it through my first semester. After discussing the need for a very dangerous brain stem surgery, we decided to schedule it in May so I could finish my semester. My plan was to recover over the break and begin summer classes in June.

Around this time, I was also notified that I was selected as one of the thirty finalists in the NFB national scholarship process. This meant that I would be going to national convention in July. I figured that having surgery in May would allow me plenty of time to begin school in June and attend the convention in July.

The surgery was definitely more complicated than anyone anticipated, and my recovery was nothing like I had ever experienced in the thirty-plus surgeries prior to this one. The surgery caused severe damage to my right side, and I was left with the inability to use my right hand and arm. Ultimately the function and feeling in my right hand would never return, and I am left with increased balance issues and pain. I attended the national convention in July with the assistance of my mother and a wheelchair. I was awarded the top scholarship that year. To say that I was elated would be an understatement. My colleagues in the organized blind movement supported me again with not only this unbelievable honor but funding that would help me pursue my academic and vocational goals. I was more than elated. But I really had no earthly idea how I would finish my degree. How would I be able to finish school not being able to use a computer anymore, having to relearn so much, and living in this awful pain? I knew that the National Federation of the Blind believed in me, and therefore I had to find the strength to continue to believe in myself. My friends and loved ones rose up to support me as well, and I knew that together we would find a way.

Learning to type one-handed was not an option because I had already been doing that. Due to a stroke when I was twenty-five, I had limited feeling in my left hand. I had been one-handed typing all these years using my right hand, and now that was taken away as well. I ultimately learned to be left-handed. Through the use of an iPhone, readers, and scribes, I continued with school. One of my dearest and best friends, Erin Daley, has worked tirelessly as my reader scribe. We developed a fantastic way of working together, and I was filled with promise that, with these modifications, I had found a solution. I was able to complete the summer courses that year and continued with the fall semester. I was also able to return to work as a home management instructor at the Colorado Center for the Blind. I continued to just slowly figure out my world with this additional disability. Travel became a major struggle, having to use my left hand and dealing with all of the balance issues, but I was able to receive a guide dog. Reilly has been an amazing addition to my life and my family’s life.

Nine months later I was continuing a slow recovery but ultimately felt like I was regaining my life. In February we received the biggest shock of my life—I was pregnant! I was always told that pregnancy would be too risky for me. Pregnancy can cause a progression in my disease and ultimately more tumors could grow. I also have a kidney transplant, and pregnancy could cause my transplanted organ to fail. There were so many fears, but the joy of this amazing miracle stifled all of them.

I continued to go to work, school, and adjust to my new normal. I was a new guide dog handler, a person with a multiple disability, and soon I would be a mom. On August 13, 2018, we went to the hospital, and I was in labor. Logan wouldn’t actually arrive until August 15 due to some major complications. I had become preeclamptic, my brain was swelling, and my kidney was failing. The physicians and nurses worked tirelessly around the clock to keep me stable, and Logan and I pulled through. The next seventeen days were the hardest of my life. Logan had to stay in the NICU because he was only thirty-four weeks. I was sicker than I think I ever had been in my life and was struggling every day. Eventually, after what seemed like an eternity, that nightmare ended, and we were able to bring Logan home. We had decided that I would leave my job at the Colorado Center for the Blind and stay home to be with Logan. I continued to attend school and was able to find employment that allowed me to work part-time from home.

Once again, I was adjusting to my new normal. I was no longer a home management teacher at the Colorado Center for the Blind, but I was more than thrilled to be a mom. I loved every minute I got to be with Logan, and I continued to recover and took that fall semester off to adjust to our new life. I returned to school that January, and soon after the terrible headaches began again. It was the summer of 2019. The convention of the National Federation of the Blind was in Las Vegas, and of course David and I attended. It really became evident to me that something was very wrong that week. I constantly had terrible headaches, dizziness, and just knew something was wrong. When we got home, I made an appointment for my routine MRI of my brain. It showed that an existing brain tumor had gotten significantly larger, and we would need to operate. They wanted to operate that September, but I opted to deal with the side effects I was experiencing until December so I could complete another semester of school. On December 5, 2019, I had to get another brain surgery. This would make my thirty-fifth surgery. I was able to work with my teachers that semester and finished two weeks early. I was able to submit all my work in advance and took my finals early. I then had forty days to recover until the next semester.

The semester of spring 2020 I took eighteen credits, meaning I only had five credits to complete in summer of 2020. August 13 has been an amazing day in my life. That day nine years ago David and I were married, two years ago I went into labor with Logan, and I received an email from my university that my bachelors of science in lifestyle medicine with a minor in pre-healthcare had been awarded.

Three years, two brain surgeries, brain radiation, and a baby later I am finally a college graduate!! I wrote this down as a reminder to myself and one day to Logan that dreams can become reality. No matter what challenges lie ahead, we all have the strength to rise up and face them.

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