Hi. It's Nice To Meet You!

Start Here, maybe sorta?

This is an unfolding memoir.

I write every weekday.

But who am I and why read this?

I am a Deaf and disabled choreographer, dancer, director, and journalist…

And I write about ‘so much more than sickness’… that it’s as if it’s a sickness.

I tend to hate being someone who lists things like this (my many near misses with death listed below) and have avoided it for most of my career but, as I thank YOU for supporting this work, and in sharing the meaning that finding Substack at exactly the worst time in my life- 2 surgeries in 1 week over Christmas, leaving me on a forced pause my work as a professional dancer and choreographer- It’s maybe nice to know why your care of this cat with 9 lives (me) means so damn much?

• I am someone who worries that writing things in bullets will make people take my writing less seriously. In fact, I normally make a whole practice of non-bullet writing.

If you want a synopsis of what’s below: “My life is trying to stay alive, trying to make things to put into the world, trying to not be a douche bag, and raising my girls as a full-time momma.”

SICKNESS (Insert Eye Roll Here)

• I have Cystic Fibrosis, but it was actually diagnosed later in life, and I’ve spent as much time as possible trying to advocate against stereotypes of CF. For example, it can run like a spectrum with variations… It is more than just a lung disease (can impact many organs, bones and more)… And there are a decent number of CF people who are deaf like me (not all are Deaf) and have issues with their heart and spine (joints).

• If I talk about my sickness too much, my eyes roll…. but I keep doing so (here is a long running column, for example) after all of these years because I know how many times I’ve tried to search for someone who’s going through something I am, and I find silence instead. “Be the voice” and all that crap. You get it.

• I have had a smattering of the following, not including procedures and all the sh*t I’m about to forget… in no particular order what-so-ever:

  • Sinus surgeries (CF be a b*tch that way)

  • Nissan Fundoplication and hiatal hernia repair (improved my lung function exponentially)

  • Experimental stem cell transplant (also improved my lung function exponentially)

  • ICD placement under my chest muscle because of a genetic heart condition mentioned below (see “Bonus Facts”)

  • Internal hernia repair down there (right after my dance company was honored at the Kennedy Center and it was one of the most painful recoveries I’ve ever had because it felt like having a baby again except this time twins)

  • 1 to 2 pancreatitis rounds per year, at minimum (sometimes with hospitalizations, sometimes I stay home) for the last decade or so

  • 1 acute kidney failure (dodged that bullet) and an odd kidney stone or 2

  • 2 discectomies on my lumbar spine

  • 2 full disc replacements (one cervical and one lumbar)

  • 1 accidental CSF leak from a test gone wrong. 1 blood patch gone right.

  • 10 to 12 (likely more, being honest) lumbar puncture type procedures (for context for those who don’t know, picture an epidural) because my spine is my worst nemesis of all. Not CF: my spine

  • A few rounds of CF exacerbation (my ranking system: sick enough to need home health antibiotics through my portacath for a month or more, after a week or so of being in hospital and then able to return home), but very few compared to most of my friends as my digestive system is much more impacted for me, versus lungs and sinuses

  • 2 failed SI joint fusions on my highly compromised left side (and dancing on a small hip fracture for a time)

  • My left foot has completely stopped moving 3 times in the last 5 years of my dance career, and I’ve somehow gotten back en pointe each time (let’s not jinx me though)

  • A cage around a disc in my spine and a cage around my left SI joint

  • 1 gastric pacemaker placed and a plyoroplasty to try to help my stomach dysfunction (it helped a lot!)

  • 1 sacroplexy, which included a hysterectomy (this was for a prolapsing uterus and colon, though the colon shut down all the more after this and later needed to be removed. I was upset about the hysterectomy but… organs are supposed to stay in the body, I’m told)

  • 1 partial colectomy to remove almost all of my colon and all of my large intestine (to prevent the increasing risk of bowel perforation and DIOS… It gave me this part of my life back!). We have discussed a future ostomy for various quality-of-life reasons and even put an operation on the books, but I cancelled it years ago because of dance and… well, mostly fear

  • Gallbladder and appendix removal (anything impacted with mucus can get sick or inflamed in CF or CF variant patients, and mine was causing terrible attacks)

  • 4 feeding tube surgeries (long story but I only have 2 actual tubes: a G and a J)

  • 2 defibrillator “attacks” (because yeah, you get to call them that if you know what it feels like to go off inside your damn body)

  • More steroid shots into joints and nerves than I could ever pretend to count (let’s just guess multiple per year?), including a multi-week work up for a nerve ablation that I then was no longer permitted to have (because of my heart). Steroid and numbing injections have never worked- not once- but healthcare still makes you go through it and I always get optimistic before each one

  • 4 screws (bolts?) through a few lower vertebrae fusing them all together

  • A giant bolt (screw?) through my SI and pelvis to try to finally fuse the damn evil left side (third times the charm?)

  • A second smaller screw on my right SI joint (she worked perfectly)

DEAFNESS (My Culture, My Truth)

• I am a Deaf woman who was raised in a hearing family, lost her hearing slowly over time, and didn't find ASL until (unfortunately) slightly later in life.

• I prefer ASL if given the choice, but I am an accent-study and lip-reading psycho (it’s a weird sport). I am great at pretending I understood you when I didn’t (context clues help me find my way eventually)… though I suck at advocating for myself unless through writing.

• I didn’t use my voice a lot for a couple of years until I became a professional dancer, and then haven’t turned it off since because of the demand of the field (or so it felt)… but I miss the days of being fully voice off. I am married to a hearing person, and I have one hearing daughter and one hard-of-hearing daughter.

• I get asked, “But how do you hear the music?” at least three times per day on my other writing (okay maybe not that much but at least once a day), and it really is its own science of how I break-down music in my own way… BUT most Deaf people love music, wear headphones, etc (Watching Deaf U is a decent place to start). Although my methods are very particular to me and my obsession is my own, there are many Deaf dancers in the world, and it’s honestly no different than hearing people: Some of you’s have rhythm and some of you’s most definitely don’t.

DANCE AND DIRECTING AND WRITING AND SUCH

• I have spent the last 8 years running a company called Company 360 (now Company Dance Theatre) on the east coast: the first body neutral, large scale, professional dance theater company in the US.

• Each Company Dance Theatre show was an original story and score, with an accompanying novella I wrote to go along with, as well as a cinematic dance film for those who can’t fiscally or physically access live theatre. We called ourselves “dance theater” a niche that blends highly athletic classical and contemporary dance, body language, acting, and some sign language woven in.

• We successfully staged 10 shows in total before going on pause in early 2024 due to my health, though I have 11 more original narratives and soundtracks fully planned out.

• World building and directing were my favorite parts of Company, outside of the obvious (friends and dancing with them). For each show, I’d create the ‘book’, makeup/costume design, music assembly, personal audio description, copy and marketing, and base lighting design for the (roughly) 2-hour productions, even though we had next-to-no time, support or resources to make them (but our dancers always seemed to pave the way anyways).

• I’ve worked as a journalist on-and-off since my first long running, Sunday Op-Ed for Gannett at the age of 14 or so, but I also self publish novellas, worked for companies like xojane, American Greetings, Livestrong, Walmart, and more, as well as had my own blog in the days of blogs (Makeover Momma)… which feels like another lifetime. I loved writing about beauty, style and lifestyle in particular (still do, as you’ll see), and especially covering New York Fashion Week for a time, before becoming more focused on dance as a whole.

• I danced professionally in a myriad of ways (like working with BalletNext, being in a Kelly Clarkson music video, and co-directing an episode of My Last Days for the CW Network) and other such resume-like things, but since I feel like listing more than the above borders on being braggadocios:

  You can skim a work-related bio at the WHY? page if you’re interested. (Thank you so!)

BONUS FACTS YOU DIDN’T ASK FOR

• I am the proud mother of two girls who I have primarily homeschooled, and used to be a single mother for a period of time before meeting my now partner, who has raised my girls for much of their memory. My Dear Daughter pieces are some of the largest reasons “why” to keep writing, and I hope you like them too.

• I am addicted to coffee and my eldest daughter is addicted to tea and it’s constant war.

• We are a bi-lingual family - my girls understand sign language more than they use it, but we float in and out- and my girls have almost always gone to work with me, or traveled with for journalism or dance. We call our life a “circus life” and we love books, chaos and animals (especially cats!)

• If I had become anything else in life - other than a Music Supervisor or Film Director- it would have been something with animals. I have hermit crabs, for example, whom I can tell apart with tender-loving-care, while the rest of my kin thinks I’m insane. All our pets have ballet themed names, as well.

• If I can live near water or live in the mountains, I’m happy… even if it means driving hours to get to work (and often has meant that). Artistic work resides in cities… but I need wide open spaces like The Chicks don’t need more bangers that we all believe we can sing (just me?)

• Despite that comment, I love alternative rock, punk and ska (all thanks to my big sister), though our dance theater shows were a much more eclectic mix to set the scene. I say that “a cello resides in my heart”, and dabble in all the styles of music (well… most).

• I am the baby of 5 children and my parents have been married for 60 years. They were high school sweethearts, and had my older 3 siblings first, and then didn’t have my older sister and I until a long pause later, which made it feel like I was raised in a family of 2 siblings, with 3 additional bossy (but loving) bonus parents. My eldest brother is 21 years older than me.

• I didn’t know I was dysgraphic until a few years ago… I just thought I was really, really, really bad at math, and felt shame about it my entire life. I still feel shame about it, but now the reasons why my hard work never “made it click” at least make more sense to me.

• My grandmother worked for the CIA and the FBI at various points in her life (is there a redacted graphic on here?) and raised my Dad and his brother as an autonomous woman- after the love of her life died- in an era when most were expected simply to marry. My youngest daughter, Follin, is named after her.

• My father’s father once played for the Red Socks, was Attorney General of something-something in Washington DC, and much more before he died prematurely from his heart in his early 40s. My Dad was just 5 years old…. But my the stories, achievements and wild tales my father has since experience as a man of many are trades are so Big Fish they seem false (but whenever my siblings and I fact check, they all turn out to be true). Examples: I once sat on Pelé’s lap as a child because of my Dad’s involvement in football… He has met Nelson Mandela (?)… and has been to most countries in the world.

• Speaking of hearts, my father has a genetic heart condition and so (seemingly) did his Dad, and thus we only assume that my heart issue (Brugade) that nearly wiped me out as a surprise in 2015 - putting me in the ICU and earning me an ICD and a lot of meds- runs in the family. That being said, considering its primary symptom is “sudden death”… I’m incredibly lucky we found it when we did.

• We also can assume hearing loss runs in my family, as my Dad has been deaf in one ear since childhood, and my older brother doesn’t have perfect range either. I like to imagine that I was standing on a genetic cliff of sorts, unsure what would happen- and then frequent Cystic Fibrosis-ear-and-sinus-infections, as well as problematic meds, pushed me over the edge… but I was already standing there thanks to genes. (Science?)

That’s just a little bit (a lot?) about my 9 Lives and the reasons why I keep fighting to make things in a world that often simply takes things.

Thank you for caring about another person. Thank you for your empathy. Thank you for (hopefully) finding this evolving memoir- with articles and interviews about boss women, music playlists and lifestyle recommendations sprinkled in- your cup of tea except…

Well, tea is just for suckers who can’t handle coffee, you know?

Forever Yours + With Gratitude,

Bailey