Breaking Blind

Breaking Blind

American Action Fund for Blind Children and Adults
Future Reflections Convention 2017 NFB GENERAL SESSIONS
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Breaking Blind
Staying Fit with a Dose of Federation Love, Hope, and Determination
by Maureen Nietfeld
Introduction by Mark Riccobono: Our next presenter is a home management instructor at the Colorado Center for the Blind. She is also an NFB Scholarship finalist this year. This will be a first of its kind presentation at this convention. It's a virtually live presentation. Here to give this presentation is a friend and colleague of ours, Maureen Nietfeld.
Hello, fellow Federationists! After sitting in the audience for nine inspiring conventions, it is an immense honor to be here on this stage today. Due to my recent brain surgery and other health complications, President Riccobono has graciously allowed me to record my presentation for you, my Federation family. I hope that you all enjoy it.
I was a very active child, and had a typical childhood. I played a lot of sports, and I went to public school. I was not born blind. I did know that I had the disease that would later cause my blindness, von Hippel-Lindau syndrome. This disease causes benign and malignant (noncancerous and cancerous) tumors in all of my organs.
When I was seventeen years old I became totally blind. This changed my life very dramatically. I absolutely wanted no part of being a blind person. I did not want to learn Braille, I did not want to use a cane, I didn't want to look blind, and I didn't want other people to know I was blind. I felt a lot of shame about being a blind person. I remember thinking I would rather have a hundred more brain surgeries if I could just have my vision back.
I didn't know anything about blindness, and I didn't know any blind people. Though I was able to finish high school and start college, I didn't have any confidence in myself as a blind person. Being active had always been a big part of my life, and I did maintain being active and exercising, but I depended on other people all the time to be able to accomplish the things I wanted to do.
Later, after ten years of being totally blind, I finally realized that I needed to accept my blindness in a different way. I went to the Colorado Center for the Blind, and I received nine months of training there. I learned all of the blindness skills that I needed to be successful and to do things independently. I also received the message of the National Federation of the Blind. I immediately became involved in the NFB when I was a student at the center, and it empowered me to do the things that I wanted to do. Later I became a staff member at the Colorado Center for the Blind, and currently I teach home management there.
Throughout my life von Hippel-Lindau syndrome (VHL) has caused many health problems. As of today I've had thirty-four surgeries. I need to maintain a healthy weight, stay active, and keep my heart and lungs strong, because I never know when I'm going to have to endure another operation. I've had a kidney transplant. I've had thirteen-hour procedures. So maintaining a healthy body has always been important to me. Three-and-a-half years ago I had spinal surgery, and wellness and maintaining a healthy lifestyle took on a completely new meaning for me.
Before my spinal-cord surgery I was exercising a lot. I was probably the healthiest I had been in a lot of years. I was doing a ton of exercise in the gym, and I was doing aqua aerobics. My very dear friend Jessica Beecham had started running, and I thought I would become a runner, too. I am definitely not an athlete, but I thought maybe I would like to become one.
But every time I ran I got a headache, and my right arm would hurt. I remember one particular time I was at the gym with Jessica and another friend of ours, training on the treadmills and running. I asked them if their heads hurt afterward, because my head really hurt badly. They each said, "No, my head doesn't hurt."
I was in more and more pain, with a very strange pain in my right arm. Finally one night I couldn't sleep because I was in so much pain. I went to the emergency room, and they found that I had two spinal tumors at C-5 and C-6. A week later I went in for spinal-cord surgery. They had to break my neck at C-4, 5, 6, and 7 and put titanium in there to put my neck back together.
After that surgery I couldn't dress myself. For a while I couldn't walk; I had to use a walker. We didn't know how much of my mobility I would get back. It was an extremely scary time for me. I knew that I needed to push myself and get some exercise.
As I began to feel stronger I would exercise, but then I would have days and days of pain. If I exercised once, I would have two weeks of terrible neck and back pain.
That is when I found yoga. A teacher was coming to the center to teach yoga classes, and I decided to try it. With yoga, instead of having more pain, I had less. I started on my journey to find exercise and nutrition that would allow me to be in less pain and to become stronger.
I started working privately with the yoga instructor and doing lots of strengthening exercises. I went back to my neurosurgeon and had my repeat scans, and everything looked really good. My neurosurgeon said there was no way I could be at that point if I hadn't started doing yoga and all the strengthening exercises. I had made the right choice for my life.
You don't have to be an athlete to be healthy. You don't need to run a 5K or even walk a 5K. I really started to embrace this philosophy for my life.
I really wanted to spread this message, and I was honored to become president of our NFB Sports and Recreation Division in Colorado. As I became stronger, I got back to where I was before the surgery. I was exercising and swimming again. I was able to do a lot of walking and weightlifting. But my doctors didn't want me to go back to running because they wanted me to protect my spinal cord.
Every time I went to the gym I heard Zumba music playing, and I really wanted to take a Zumba class. I love that kind of high-energy exercise! But the way Zumba is taught is completely nonverbal. An instructor stands at the front of the room doing all the moves, and everybody else follows. So I was never able to take a Zumba class. I thought about it for a while, and finally I decided that if I could become a Zumba instructor, I could modify my Zumba classes so that blind people could take them.
I looked for certifying classes in my area of Colorado. I found a class and reached out to the instructors. They were completely onboard with working with me.
When I went to the class I was very nervous, because I hadn't done anything like it before. But ever since I got my training at the Colorado Center for the Blind, it's been important to me to challenge myself in new ways. I really wanted to do this, to prove to myself that I could do it. So I took an eight-hour Zumba certification course, having never taken a Zumba class in my life.
That day was one of the most difficult days I ever spent. It was so hard! I really, really pushed myself! They provided me with half a day of one-on-one instruction to show me all the moves that the teacher would be doing. Then I had another person with me for the second half of the day, doing the same thing. At times they told me that most of the class was sitting down, while I was still able to push through. Though I was struggling, so was the rest of the class. That's what I always try to remember when I'm exercising or when I want to try a new class at a gym. I'm not going to be the only one struggling. I remind myself that I'm working to better myself, and it doesn't matter where I am at that moment and how much I can do. What matters is that I'm pushing myself to do it, and I know why I'm pushing myself.
After I completed my Zumba certification, I started to think more about what I could do to challenge myself. Getting my certification gave me the spark to go back to school and finish my degree. I decided to pursue a degree in human nutrition and dietetics. I felt passionate about going back to school and getting this degree. I want to empower others to do what they want through wellness and nutrition. Also, this degree will make me a stronger teacher for my students at the Colorado Center for the Blind.
Recently I had major brain surgery that has been one of the toughest things I've gone through in a really long time. It started in February, when I began stereotactic radiation for two of the brain tumors I had. Since then I've had to deal with a lot of nausea and vomiting and headaches. I continued to go to work and go to school because that is what fulfills me and makes me happy. I also continued to try to exercise during this time. If you can only do twenty squats one day because you don't feel well, that's okay. I had to keep telling that to myself.
It was very difficult to start at a time in my life when I felt my healthiest and experience a steady decline. Some days I would do twenty squats, twenty push-ups, and twenty sit-ups, that's all. It felt really good to me, that I could accomplish that in a day. If I could do that, and attend a class, and go to work, then I felt really good!
On May 17 I went in and had my brain surgery. The doctors told me it was going to be a very difficult procedure. The tumor was in my brain stem, a horrible area to operate on. When they went in, they found that one of the tumors was wrapping around my cervical spine at C-1, so the surgery was even more difficult than they anticipated. I woke up with central paralysis in my right arm. I have numbness in my right leg, in my foot, in my face and neck and chest. My right arm is not usable to do anything.
The support of my family and the friends I've made through the NFB really makes a difference, and the message of the NFB really resonates with me. I know that I'm able to come back from this as well. Four weeks after my surgery I started going back into the pool and being able to walk and move there. I started doing five squats a day and going up and down the stairs in my house. I started to rebuild my strength and to keep that message alive for myself. I know that I have to push myself to be able to be strong again. This message that we have through the NFB is going to extend to all areas of my life. This isn't going to stop me. It isn't going to define me. It isn't going to keep me from living the life I want.
I know that I'm going to get strong again. I know that I'm going to be a Zumba teacher. I know that I'm going to go to school this fall. I'm going to be able to do everything that I want to do despite my blindness, despite the VHL, despite every barrier that may be there or may come my way. Simply having the message of the National Federation of the Blind and knowing that I can live the life that I want. I truly believe that I can live the life I want, and that I will return to the life I had prior to this surgery. I will continue to meet new challenges and have more accomplishments in my life.
Each and every one of us is capable of making big changes for ourselves and for those around us. With love, hope, and determination, let's defy expectations and turn our dreams into reality.

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