My name is Bailey Anne Vincent (sometimes hyphenated to be Vincent-LaBarbera for my Italian man-spouse). I grew up in South Florida in Boca Raton, the “Beverly Hills of the sunshine state,” but relocated to the mountains of rural Virginia when my parents had a mid-life crisis and determined cows made better companions.
From the outside, my life looks perfectly normal. I’m a wife and mother to two lovely girls. But upon further inspection, you’d learn that I’m just a little bit different. For one, I’m profoundly deaf. Growing up, we didn’t actually realize I was progressively hard of hearing, even though in hindsight, my Mom could see all the warning signs. I was always the “flibbertygibbit” of the family, and no one ever realized that the problem wasn’t my intellect, but my hearing. I spent a lot of time feeling silly and idiotic, even though I was actually honing skills that I’d need for a lifetime.
Although being deaf isn’t easy (I can’t make my own phone calls or get hired at a variety of places,) the positives have always outweighed the negatives, simply by using perspective. I mean, come on guys: I can talk with my mouth full! How is that not AMAZING?!? Also, I recently married a former speech therapist. Who says this can’t work in your favor?
The other thing you might not know just by looking at me is that I’ve been battling a chronic illness for years. I was a super late diagnosis for Cystic Fibrosis, with Primary Cilliary Dyskensia later playing a central role. It was a tricky diagnostic process, which is sometimes more arduous than anything else. As a teenager, I would get pneumonia every few months, but because I was a ballerina I would grab some antibiotics and sweep it under the rug; whatever it took to not get left behind in the dance studio. For me, constant infections just seemed normal. But the disease has truly taken a lot out of my body: both my pregnancies took a tremendous toll on my health, and looking back my doctors think it’s a miracle both my girls were perfectly healthy in the end. Pregnancy is not impossible, but it’s certainly more difficult with lung disease of any kind.
Motherhood while dealing with a chronic illness is challenging, but I don’t think of myself as some kind of a superhero. Don’t let the culture of mother martyrdom ever make you feel less than. My girls motivate and drive me, and I love them more than anything on this planet… but it also takes a physical toll, and that’s just a reality. If I’m being blunt, dealing with physical and mental health concerns is a lot more complicated when your priority is not yourself, and when you can rarely find a second to sit or think, it can feel impossible. Add hours of treatments or medicines to that scenario, and it can feel incredibly complex.
That said, my kiddos definitely motivate me more than anything else, but I think the trick to battling through tough physical times with a chronic illness is finding something about which you are infinitely passionate. Lately, for me, that’s been re-entering the professional world of dance. Instead of battling my body to avoid feeling like I’ve been hit by a bus, I’m focused on something larger than my aches and pains, like my flexibility, my feet, and my passion. It helps me free my mind and my spirit, however briefly, from the encasing which causes most of my grief.
In terms of carving out time for mental peace, my days revolve around the babes, and it’s all I can do to keep up until I crash out late at night. Ideally? I’d say that training for dance is my solace right now. As most people with chronic diseases will know, you can never predict how you’re going to feel on any given day, and you can’t control what’s going to happen from one week to the next. So you have to be mentally prepared to roll with the punches: you have to rest when you need it, but you also have to steel yourself to push through an “okay” day. I almost always have some legitimate, clinical reason to not do anything on any given day, but if I always used those reasons, I’d never get out of bed! So, you just have to constantly evaluate what feels best, and occasionally totally let yourself off the hook.
I also turn to a lot of Buddhist spiritualism whenever I can, and find tiny escapes in things like a lengthy face-wash session or playing with body lotion. Seriously, little bits of silly happiness and escapism are everything. Thinking back on when I was at my worst, I used to daydream about the trips I would take once I was cleared to fly, or the adventures I’d someday experience in the world. Daydreaming about travel is another favorite past-time.
One negative that isn’t discussed enough is the mental health toll of dealing with shifts in diagnosis over the years. Those with chronic conditions normally get diagnosed with a variety of things that are later changed or amended until doctors hit on the “right one.” We so rarely talk about the impact that has on the person diagnosed psychologically, and it’s more common than you might think. The labels placed on us are not within our control or power, yet we feel responsible if medicine doesn’t know what to make of us.
My label has changed a couple of times in the past, and I no longer worry too much about it. As long as I’m healing, on top of my treatments, getting appropriate care, and living my life, I don’t really care anymore. I still advocate for CF patients, projects and friends, and am treated at a clinic in parallel, but honestly? I’m really just a rogue lung sicko, and that’s okay, because that’s my life. A dear friend said, “We are all mutants. All of us. We don’t care”… After that, I stopped caring too. It took a lot of time and a lot of tears, but friends like that can make all the difference. NO ONE fits into this weird, messy, ever-evolving, ever-changing world of medicine, really. Doctors are constantly discovering new things, so stop worrying about a community or a label; just focus on what you CAN control, like surrounding yourself with good friends and keeping a positive, great perspective. Stay curious, ask a lot of questions, and don’t be afraid to be brave. I’ve just been the recipient of a new experimental stem cell procedure, and it seems to be working. Fingers crossed. You can never give up hope.
I will never be “normal.” Every day brings new challenges, and there is no day off from staying on top of my health. I have tons of treatments, complicated medicine routines, and am constantly terrified of new germs or bacteria that could set me back. There are tons of things I can’t do, sure. I can’t swim in rivers or lakes that harbor infections. I can’t eat raw fish or carbonated beverages, since my body can no longer throw up. I should wear my protective mask more in public to avoid bugs from others. I am always wary of my portacath, my defibrillator, my GJ tube, and all my other robot parts that need protecting.
But guess what? There are tons of things I CAN do too. Like wake up and breathe, in even its shallowest of forms. I can be alive. I can be here to experience my husband and my girls. My body is here, and my mind is present. Quite frankly? That’s pretty damn awesome.