[Central-MD-Chapter] Article by Maureen Nietfeld

[Sharon Maneki]

Hello All,

At our June meeting, we heard the article entitled "A Note to Motivate
Myself and Clarify my Path". It was taken from the Braille Monitor of
November 2020. I am pasting it below just in case you want to hear it
again. Enjoy!


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 theMonitor 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.


*Sharon Maneki, Director of Legislation and Advocacy*
National Federation of the Blind of Maryland
410-715-9596

The National Federation of the Blind of Maryland knows that blindness is
not the characteristic that defines you or your future. Everyday we raise
the expectations of blind people, because low expectations create obstacles
between blind people and our dreams. You can live the life you want;
blindness is not what holds you back.
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