When I was discharged from my first emergency spinal surgery in April 2018 , I was able to move my limbs, and my doctors were thrilled with whatever mobility I had at the time. But once I started chemotherapy, I didnt receive physical therapy like I should have. While I was on the chemo floor, with nurses and the oncologist, my spinal cord injury and paralysis were not even addressed.
Right away, my mobility declined and my muscles atrophied. I wasnt able to move my right foot or left arm. By the time I received PT, I wasnt able to walk or even put a bra on properly.
The only solution? Get used to a chair until I can move on my own again.
Now that Im out of the hospital and using an electric wheelchair, Ive lost my flexibility, too. My quad muscles have shortened from sitting for 16 hours a day. Ive gained back the weight I lost before having surgery.
Right now, I have to use a catheter because it takes way too long to move from my chair to a regular toilet. People always think the worst part of being in a wheelchair is not being able to walk or ride a bike, but for me, its just the process of using the bathroom.
The physical challenges are awful, but humanity disappoints me even more.
When youre in a wheelchair, youre invisible to people. Picture this: When Im driving down the sidewalk, people walk right into me and trip over my chair. Youre not at eye-level, so people dont notice you. Luckily, I can adjust my chair to make myself much taller, and I do that before meetings or teaching a class. I like to come into the room in a regal position. Thats my style.
That is, if I can get into the room. Ive learned that the blue handicap sticker is a farce. So many places that say theyre handicap-friendly are far from it. I've already put one airline on blast for the poor service they offered to someone in a chair who needed helpand I could name a whole list of others that need to get it together.
Case in point: I recently stayed at a hotel abroad that was a wheelchair users nightmare. I was told the only way I could get in was through a lift that was outside and down an alley, and I also needed a key to use it. Of course, the key was inside (how convenient!), so I had to call them when I arrived to have someone come out and give it to me.
When youre in a wheelchair, youre invisible to people.
The hassle didn't stop there. The lift was actually part of another building that was attached to the hotel, so I was passed off to them to get the key. I had to make my way through four different doorways, then up an elevator, only to pound on the door of the hotel to finally get inside. All of this was *after* they claimed to be handicap accessibleand I paid $600 a night to be there.
The accessibility issues I've faced stretch even further than that. The lift chairs in hotel or public pools and hot tubs are almost always dead, and the chairs in showers are always too low, which makes it nearly impossible to get back into my chair when Im wet. Its incredibly frustrating.
Until these accessibility issues change, I guess its on me to get my mobility back.
My goal is to walk again. I know Ill probably never walk around Disney World or the airport, but Im hopeful I can walk for short distances and get some normalcy back in the future. I want to be able to use the ladies' room like everyone else.
My doctors and therapists believe Ill walk again, and I just went through knee surgery to fix my right knee, which will hopefully help get me up and moving eventually. Ive been working with several PTs to stretch and do resistance training in the pool by marching against the jets current. My physical therapists help keep me pliable, and Im getting stronger every day.
The good news is that being in a wheelchair hasnt stopped me from instructing. I raised and trained my dancers to know their terminology, so they dont need me to show them every move and pose. Thats why I wanted to do the current season of Dance Moms, to prove that I can still teach. Im not giving upand Im not going anywhere.
As told to Kristin Canning