The View From Here (24-02)

black and white headshot of justine smiling at the camera

By: Justine Chichester

“It’s important that we share our experiences with other people. Your story will heal you and your story will heal somebody else. When you tell your story, you free yourself and give other people permission to acknowledge their own story.” – Iyanla Vanzant

Recently, I was at a restaurant having dinner with a friend. When I got up to go to the restroom, I grabbed my backpack to bring it with me. My friend jokingly said to me, “Do you always have to bring your luggage with you to the bathroom?” I realized at that moment that even my closest friends really have no clue what those of us with disabilities have to deal with on a day-to-day or even a moment-to-moment basis.

My friend’s innocent joke during dinner just shed light on the fact that I dress all of this up in a package that I present to the world as if there’s nothing wrong. While yes, I am walking again, and I’ve made tremendous progress since my fall in 2014, I suffer greatly from a bladder that remains partially paralyzed. And it makes life truly difficult for me. If you’ve suffered a spinal cord injury, you know what I’m talking about…the catheters, the UTI’s, the constant accidents, the list goes on and on. And I never shared any of this with anyone. Even my closest friends.

There is a saying, “Just because I carry it so well, doesn’t mean it isn’t heavy.” But I think this “carrying it well” goes for most of us, doesn’t it? While you may not suffer from a disability or have to deal with the types of challenges those of us who are disabled do, most of us have things in our lives that we just don’t discuss. Things that we hide away to just get through the day, so we don’t have to share it with anyone. We put the makeup on, or the business suit, we take and post the glamorous selfie, when, in fact, behind the scenes, our lives aren’t exactly what we dress them up to be. We present an image we think the world wants to see, instead of sharing the difficulties we deal with day-to-day, when it’s the sharing that may actually be the thing that helps others.

Last year, on December 5th, I had an e-coin nerve stimulator surgically implanted into my right ankle after many months of appointments and tests with urologists at the University of Miami, addressing my bladder issues since suffering paralysis in 2014. You see, while I was fortunate enough for my legs and the rest of my body to respond to intensive physical therapy after my injury, and I am walking again using a walker and a cane, my bladder and my kidneys still weren’t functioning properly, and it was severely impeding my quality of life. My physicians decided the e-coin nerve stimulator, which is new technology, would be the best option for me. My urologist placed the e-coin implant, about the size of a nickel, right under my skin at the ankle. Here, the device can stimulate the tibial nerve, which helps with bladder control. It is the same nerve acupuncturists use to treat an overactive bladder.

So far, since the surgery, I am very happy to report, it is helping. But it’s early on in the therapy and my condition continues to change for the better. I thought it was important to share this, even though it’s not easy for me to discuss and isn’t the pretty picture I always try to put out there. Sometimes we have to bring to light the stuff we keep hidden in the dark. That way, hopefully others can learn and benefit from our experiences, as difficult as they may be to discuss or reveal to everyone.

So, you may still see me bringing my “luggage” to the bathroom while I’m out and about. The good news, though? Now I just don’t need it as often. And, hopefully, soon I won’t need it at all.