NMOSD Made Me Say Goodbye to High Heels

Every time I’m asked at a physical therapy consult, “What’s your goal?” my answer is almost always to walk - in high heels.

Before my neuromyelitis optica spectrum disorder (NMOSD) diagnosis, I had a series of symptoms not visible to others (but obvious to myself). For example, my out-of-control bladder and suffering from incontinence, or a tingling sensation in my legs like ants were crawling under my skin. Or vision loss and feeling like the room was getting darker, or feeling off-balance even when I’m sitting down.

My most visible NMOSD symptom

But none were so obvious as the symptom of my walking. My walking was one of my first visible symptoms to those around me. My family and friends thought I was faking my limp in the beginning, even judging me for wearing high heels all the time. My mom even told me that my age was catching up to me and my legs were feeling it. Mind you, I was only 26 years old at the time.

Those around me also knew my fashion style and knew I loved to wear high heels. I could handle walking on any level of high heel, from 2 inches to 8 inches. A high heel to me meant adding elegance to my look. It meant adding power to my womanhood and stomping on my fears. So, when NMOSD continued to progress so did the progression of my symptoms - especially my walking.

Giving up a part of me

After much denial of brushing off that this wasn’t my life, my refusal to give up high heels was as enormous as my big ego. The limp and my locked knees made me realize that this was my new reality and I had to hop off my high heels. I went on to buy cute flats and lifestyle sneakers. I kept my high heels in my closet collecting dust, and with time I realized that wearing heels for me was not only unsafe but also not viable at that time in my disease.

Knowing I was making the correct decision, it was with a heavy heart I knew I had to give away my high heels. One night I cleaned out my closet and placed them all in a bag for donation. As I was grabbing each pair, I would remember the night I wore them with corresponding outfits. It felt like a funeral for me. I was so sad because I was letting go of a part of me that for a very long time defined me. I felt like I was giving up a part of what was supposed to be my womanhood. My confidence was being torn apart like a piece of paper.

It was truly sad for on a personal level. NMOSD was taking away from me something that defined me for so many years. Over the course of one year, NMOSD was stripping me from things I enjoyed, like wearing my heels.

Grieving the old me

I started hating NMOSD. I often questioned why me? Why do I have such an obvious disease? Why couldn’t I just get something that wasn't as visible? This was a difficult grieving stage for me, and getting rid of my high heels made it even harder.

Nonetheless I donated my high heels. I slowly shopped for comfortable flat shoes that would allow me to walk better, so I thought. But as the years passed my progression grew. Now I currently ambulate on a wheelchair and hardly wear any sort of shoes. Nowadays I’m mostly wearing compression socks and slip-on sneakers for speed and ease. With time I’ve become more grateful for where I’m at now with my diagnosis, in the sense that I still get to live my life in other shoes that are not high heels.