Abby Lee Miller, 53, star of the reality TV show “Dance Moms” and owner of the Abby Lee Dance Company, says she feels invisible to people because of her wheelchair, and is setting small goals for getting back on her feet.
“When you’re in a wheelchair, you’re invisible to people. Picture this: When I’m driving down the sidewalk, people walk right into me and trip over my chair. You’re not at eye-level, so people don’t notice you” Miller said in a new interview with Women’s Health.READ MORE
Last year, Miller underwent an emergency surgery on her spine, which revealed she had a cancer called Burkitt lymphoma, a type of non-Hodgkin lymphoma. The surgery also left her unable to walk, and she has been confined to a wheelchair since.
“The past year for me was a blur of spinal surgeries, treatments, and 10 rounds of chemotherapy to treat my Burkitt lymphoma, a form of non-Hodgkin’s lymphoma that impacts immune cells. Now, I’m cancer-free,” she said in the interview.
But even after being declared cancer free, Miller is still recovering from her treatments, and learning how to adjust to life in a wheelchair, “I’m still struggling with the aftermath of my illness and the surgeries that came along with it. A huge challenge I’m still facing every single day? My seriously limited mobility, thanks to how the cancer and surgeries impacted parts of my body, and the electric wheelchair I currently rely on as a result.”
At first, she said, she had a little bit more ability to move her body, “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 after some of the treatments she needed for cancer, she doesn’t feel that her mobility got the attention is deserved, “But once I started chemotherapy, I didn’t 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.”
So she started to lose some of that ability to move her muscles, “Right away, my mobility declined and my muscles atrophied. I wasn’t able to move my right foot or left arm. By the time I received PT, I wasn’t able to walk or even put a bra on properly.”
Since that time, she’s lost a lot of her range of motion as well, “Now that I’m out of the hospital and using an electric wheelchair, I’ve lost my flexibility, too. My quad muscles have shortened from sitting for 16 hours a day. I’ve gained back the weight I lost before having surgery.”
And she isn’t mobile enough to go to the bathroom on her own, “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, it’s just the process of using the bathroom,” Miller told Women’s Health in a new interview.
She also said that a lot of places that claim to be handicap accessible really aren’t, “That is, if I can get into the room. I’ve learned that the blue handicap sticker is a farce. So many places that say they’re 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 help—and I could name a whole list of others that need to get it together.”
And that it can be really hard to get the attention required when you are in a wheelchair, “I recently stayed at a hotel abroad that was a wheelchair user’s 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.”
In terms of her prospects for walking int he future, Miller seems to be cautiously optimistic, and says she’s working hard to get back her mobility, “My doctors and therapists believe I’ll walk again, and I just went through knee surgery to fix my right knee, which will hopefully help get me up and moving eventually. I’ve 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 I’m getting stronger every day.”
In the mean time, she’s able to do what she loves most — teach dancing — from her chair,”The good news is that being in a wheelchair hasn’t stopped me from instructing. I raised and trained my dancers to know their terminology, so they don’t need me to show them every move and pose. That’s why I wanted to do the current season of Dance Moms, to prove that I can still teach. I’m not giving up—and I’m not going anywhere.”
Abby Lee Miller and advocating for yourself to your doctor
In a prior interview, Miller told Women’s Health that women should record what their doctors are telling them about their bodies, and if they won’t let you record the information, get a new doctor. She also talked a lot about how to advocate for yourself, and make sure you are getting hte care you need.
She explained that to her, sitting in the doctor’s office isn’t when she feels calm, and she wants to make sure she can listen to their advice again when she’s more comfortable. “You want that information, you wan to be able to go home and process it, and listen to it over and over and hear exactly what they said because let’s face it if you’re in the emergency room, or you’re in the doctors office, you’re upset, you’re worked up, you’re in pain, and you might not hear everything clearly. That’s my advice. When you know something’s wrong, get to the bottom of it.”
Dr. Scott Strobe, Chair, Department of Otorhinolaryngology Head & Neck Surgery University of Maryland on what you should expect from your doctor
Miller drew on her own experience as a woman and working with women, to sketch out what she sees as one of the main problems with the way women respond to illness: they take care of everyone else, and forget about themselves. “I think you need to be an advocate for your own body. And I work with so many women because their daughters take dance from me. And I know that woman all over the world take care of their children,” Miller said. “They twist their ankle, they have a cough, they have spots all over them, you are at the doctor immediately. You also take care of your husband. When he’s sick it’s like the whole world is coming to an end. And you also take care of your own parents. You become the caregiver. And you put yourself last.”
She even admitted that was how she had always acted, taking care of others’ health before her own, “That’s what I always did.”
But when the pain is really bad, Miller said, you have to take care of yourself too, “But when you know that there’s a pain that is so significant, that is so traumatic, you have to do something about it. You have to find the answers.”