[Ohio-Talk] Braille Monitor November 2020 (A Note to Motivate Myself and Clarify My Path)

[Andra Stover]

I loved reading this story. Thank you so much for sharing :-)

On Sun, Nov 22, 2020 at 8:28 PM Suzanne Turner via Ohio-Talk <
ohio-talk at nfbnet.org> wrote:

> Grab tissues while reading this!
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> It is such a Thanksgiving story!
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> Suzanne
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> ///
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> Braille Monitor                         November 2020
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>
> A Note to Motivate Myself and Clarify My Path
>
>
> by Maureen Nietfeld
>
> From 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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