Between my grandparents and my stubbornness, I had being disabled in the bag. My confidence was at an all-time high. I’d be the first to volunteer and lead the pack. The word “no” and the distance or challenge of any kind were nonexistent.
After I was born, I had many surgeries to assist with straightening my joints and allow better mobility. Entering grade school, and heading into young adulthood (18-19), my grandparents and I took the recommended steps from doctors that included different surgery options, the wearing of braces on the legs, splints for my hands, attending both occupational and physical therapy sessions, as well as routine follow-up appointments with doctors and specialists. By the time I reached college, it was all up to me. I was no longer a patient at Shriner’s Hospital for Children, and I was now completely in charge of my own health and treatment.
In 2016, I started my education journey at Lander University. Because Lander was a bigger university than the one I previously attended, getting around campus became a concern. Thanks to the help of Vocational Rehabilitation, I was provided a scooter to ease those concerns. After I graduated from Lander in 2019, I worked 3 jobs. Two of them were in retail, which kept me busy and constantly moving and on my feet.
In January of 2020, I moved away from retail and started my career in customer service. If you remember, 2020 is also the year COVID shut us down. Luckily, my job allowed us to work from home, which I know is a blessing because I know everyone wasn’t as lucky.
Fast forward almost 5 years later, between the scooter, breaking my arm before graduation (look at related posts), and being stagnant at home working, I’m struggling to face my new reality.
Outside of the external factors, I have to take accountability. Ever heard that saying, “use it or lose it”? Yeahhhh, I’m a prime example. I’m guilty. I’m not as consistent as I should be with my exercising and dieting. But it’s a work in progress. In fact, I challenge you to reach out for an update or check in….
It’s said that arthrogryposis (AMC) doesn’t worsen over time. However, as one ages with AMC, joints can stiffen, energy level reduces, arthritis and scoliosis can develop, and there’s a reduction in mobility. Unfortunately, arthritis is the only effect that’s not happening right now.
In high school, my senior year, I’d spend a lot of time roaming the halls to avoid class time. During the summer, my friends would come over, park their cars, and we’d start our trek downtown since it was walking distance from our home. My Nanny and I would use many Saturdays to walk around the flea market. Or on a good day, while visiting our favorites; JC Penny, Macys or Belk’s, I could talk her into walking around the mall. And during my years at Spartanburg Methodist College, it wasn’t out of the ordinary to spot me walking across campus, rather than to attend class or to a meeting.
Lately, I’m barely able to walk 10 minutes without getting worn out. I’m not able to stand up past 7 minutes, 5 on a good day, without my legs buckling. Breaking my arm at the time I did was hard, but I had just graduated, was not working yet, and was still living with my grandparents. Nonetheless, today I’m deep in adulthood with countless bills. Just the thought of breaking any kind of bone at this stage of life gives me anxiety. Steps have always been a challenge; still, I never minded using them as long as the stairs/stairwell met my physical needs. Now, it’s a talk back with myself because I’d rather avoid them, but I know they’re necessary for exercise and motor skills.
The turn my mobility is taking has been a slap in the face. I wasn’t prepared for this. If I’m being totally transparent, it has affected some of my quality of life.
Currently, I’m in the process of getting a wheelchair. In the beginning, I struggled with the idea of it. However, I had a wheelchair with me when I went to Florida and the opening weekend for Avatar 3: Fire and Ash. When I went to the Beyoncé concert, I rented a scooter for the day. Those events alone helped with my acceptance. I was able to enjoy and take in the moments better without much discomfort and my energy/strength being too depleted.
I’m still wrapping my head around what my new mobility will look like. I look forward to having that extra mobility support to start enjoying more of life again. Stay tuned for the updates…..
#stillRising
#stillRising 