MS and mobility devices: A little bit about my journey

One evening, upon arriving home after leaving my graduate school internship, I desperately needed a nap, and so I lay down. When I woke up, I could not move my left leg! It just would not move. I remained calm on the surface, but deep down, I was nervous as I made the call to 911. I took an ambulance to New York Presbyterian on Main Street in Queens, NY, and spent the next 14 days in the hospital. While there, I continued to prepare for graduation, surrounded by my textbooks, laptop, pens, and post-its.

One morning, while in the hospital, the doctor walks in my room with a group of about seven medical students. Everyone had a pen, a pad, and very serious expressions. I sat up in the bed and closed my laptop, and looked around at the grave faces surrounding me. I said to them, “You all look so serious, like you have some bad news to share. But before you start, I need each of you to know that my future is so bright all of you are going to need sunglasses,” and instantly, the room erupted in laughter. It was exactly what I felt that moment called for, a break in the tension and severity that had threatened to suffocate the room. But once the doctor and students left, I locked myself in that tiny hospital bathroom and gave myself an uninterrupted 30 minutes to cry, spit, curse, and pray.  I had released everything, and I can tell you honestly that I have not cried that hard about my diagnosis since. And while I allow myself moments to grieve my former self and the things I'm no longer able to do, I remind myself often that there is so much more to me than my MS diagnosis. I am a daughter, a sister, a wife, a friend, an auntie, a great-aunt, and a pet mommy to my two adorable fur babies.

Now, my experience with mobility aids. After falling, like 10 times (no injuries, except maybe to my pride), I started walking with a cane, which I will confess was a huge adjustment for me. From the cane, I later transitioned to a rollator, and most recently, I was assessed and approved for a wheelchair. My chair is a lovely gunmetal and black, sleek and fashionable. I often tell people that "MS will always look different on me" because it's important to me that I don’t lose myself or my style to MS. My mobility devices keep me safe and out of the emergency room, which is, of course, the most important thing. But I think it's also important that, whenever possible, my mobility aids still function as an extension and expression of my Self.  It took lots of time, research, and plenty of patience to find a mobility device that works for me and my style, but it has been so worth it.

Another important aspect to take into account when considering mobility devices is your support system. I cannot stress enough the value of surrounding yourself with people who love, respect, and affirm you. To illustrate:  I once had someone pull me aside in the weeks leading up to my wedding. She had tears in her eyes as she said to me, “Shander, I’m so excited and happy for you, and I can’t wait for your wedding. I hope you don’t have to use your cane on your wedding day."  When I just looked at her and then asked,  "Why?" she, of course, had no response. I asked her if she was embarrassed because I certainly was not; I was happy and secure knowing that I would not have to worry about falling on my wedding day. I don't believe she was being intentionally insensitive. Still, her inability to see me as a whole, complete being because I needed the cane was telling -- though it spoke more about her mindset than it did about me as a person living (and thriviing!) with MS.  So be sure to have a community around you that will celebrate, embrace, and champion you no matter what!! (Sidebar: my amazing husband purchased a Swarovski cane for my fabulous wedding day.