Thriving with NMO: The Tools in My Bag
A peer once told me that I was the busiest person they'd ever seen in a wheelchair, which raised my eyebrows. Just because you are living with NMO, if you're in a wheelchair, if you become disabled, early in life or later, it doesn’t mean that your dreams and aspirations have to end! It can actually be the beginning of reaching into the bag God provided, which holds everything you need to succeed!
Finding my tools pre and post NMO diagnosis
Looking back, it feels like God gave me a talent for caring for others, speaking up, and being an advocate!
Tool #1: My passion for speaking out
My major in high school was communications. I loved coming up with TV show ideas, and I always had my box camera on me, taking pictures wherever I went. Even as a child, I took different classes at summer camp. I learned how to make a camera and develop my photos in a dark room.
During my junior and senior years in school, we had to write for the school newspaper. I used to tell my teacher that I didn’t like writing. I wanted to be in front of the camera or behind it!
Between 18 and 23, I worked for Radio One in Cincinnati, where I live, as a promotion assistant, and I really enjoyed it!
Tool #2: My passion for caring
When my daughter was born with a rare disease called Pompe, I remember thinking, "I know nothing about the medical field, but I know I'll provide the best care for my baby girl Amariyah, whatever that looked like!!" I researched day and night! This was in 2008 and 2009 before social media and hashtags made things easy to find like they do today.
I was always complimented on how well of a job I took care of my baby. I asked the right questions at her doctor's appointments and when she was in the hospital. I wanted to make sure that everyone could leave the room with an understanding of the plan for whatever concerned my baby girl.
When she passed, I decided to go into the medical field. A month after she passed away, I started college to pursue whatever I needed to do. I enjoyed my experience of taking care of my baby.
Tool #3: My passion for cosmetology
Today. I am a licensed cosmetologist. I was walking when I enrolled in cosmetology school in August 2011. I couldn't complete school right away after taking multiple breaks because of my NMO. Later, I completed the rest of my cosmetology schooling and went to the state board to take my test. I passed it while in my wheelchair and obtained my license in January 2016. Now, I have a stand-up wheelchair that I use to help me style my clients.
It’s not about how long it took or whether I didn’t finish the same way I started. I had no clue I would be wheeling out with my license. It's the fact that I pushed through and finished, and I was able to complete my end goal!
My goals and dreams haven't wavered
Before my NMO diagnosis, I remember a friend telling me, "you don’t know what you want to do! Are you going to have a TV show about doing hair and putting band-aids on people?!"
My exact answer was, "yuppp!!! Look out for me!" I wasn't disabled at this time, but I feel that God was helping me fill my bag with tools: my experiences I could reach in and grab whenever I needed them or when the time was right.
I have always been a strong, driven woman
I laughed at my friend's comment, but I also knew that I had the drive to do whatever I wanted to do in life. I will always pursue the necessary steps to get the job done! I wasn’t aware of the obstacles I'd face after my NMO diagnosis - or the magnitude of and what kind of obstacles - that I would have to push and pray through!
Reaching in my bag after my NMO diagnosis
Today, I am a speaker. I’m a freelance writer. I’m an advocate, first and foremost, for myself, and I have become an advocate for many others living with NMO. I speak up for people who are in wheelchairs and those who are living with disabilities. I advocate for people in hospitals, physical therapy, and nursing homes.
I’ve been interviewed by news outlets and television shows. I’ve always wanted to be on TV but didn’t know that my God would present everything I dreamed of in this way. I am so proud that I'm known by so many people all around the world.
I feel that God was preparing me
Reflecting now, after living with NMO for some time, I believe that God was helping me fill my bag. Inside are the tools I can reach in and grab whenever I need them or when the time is right to use them for the benefit of my life.
I’ve been walking by faith and not by sight. Every tool that God has put in my bag is being used. Everything I’ve learned and the talents I've crafted and worked towards since childhood is prevalent. It molded me to be the young woman I am today.
There's room in my bag for so much more!
I became disabled in a wheelchair at 29 because of my NMO. I went to sleep and woke up paralyzed. I'm constantly learning how to maneuver around what my life looks like for me in the present moment.
Being diagnosed with NMO, I've definitely used all the tools God gave me. Some were all the way at the bottom, there since I was a child, just waiting to be used.
I have so much more in store that I’m excited to pull out of my bag and use. We all have one life to live. All we can do is try to make the best out of the life we're blessed to have.
Were you misdiagnosed, prior to being diagnosed with NMOSD?