Antonia Faizah Sinibaldi
Hi! I have been paralyzed due to a spinal cord injury that I have had since I was two years old. I have lived 20 years with this injury. I have laughed, cried, and died due to this injury.
I sing, I dance, I act, and much more with this injury. It’s been a bumpy ride, but I manage with it through music, faith and family, as well as helping other people with paralysis. I am 100% a disability activist. I wrote my book, I write for SPINALpedia, and I do so much more.
The Antonia Faizah Sinibaldi Story
Strength, Hope and Perseverance
“What’s the future going to be like for me?”
“Will it ever change?”
After asking those questions and more for a long time, I understand that while I may never find all the answers, I have learned a bit from the experiences that I have been through. While I have not, and may never, reach a state of full acceptance of what’s happened, I have resolved to make the best of my situation by sharing my story in the hope that it might help others dealing with injuries, mental illness, and other challenges.
I do this as much for me as I do for others. I devoutly wish to be understood. I need to be heard. That’s why I write in my own voice, not in fancy, flowery language. I want you to know the real me.
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|Real America||2020 Census, Print Campaign||Spike Selby/Michael Jones Photo Studios|
|This||Marrel||Marymount Manhattan College|
|You’re a…Charlie Brown||Lucy||Inside Broadway/Weehawken HS|
|The Music Man||Ethel Toffelmier||Inside Broadway/Weehawken HS|
|Anything Goes||Grandmother/Ensemble||Inside Broadway/Weehawken HS|
|Annie||Lieutenant Ward||Inside Broadway/Weehawken HS|
|The Wiz||Munchkin/Ensemble||Inside Broadway/Weehawken HS|
|Cinderella||Ensemble||Inside Broadway/Weehawken HS|
|Side Note||Acapella Group||Marymount Manhattan College||2016 – Present|
|Express Yourself||Charity Performance||ArtWorks Foundation||2015|
|A Moment Like This||Vocal Competition||NJ Fame Game||2008|
|The Antonia Faizah Sinibaldi Story…||The Donning Company||2017|
Marymount Manhattan College: Theatre Dept. 2016-present
Elefante School of Music: Musical Theatre Summer Conservatory 2013
Private Acting/Singing Coaching: Lauren Lorentz, Phillip Hernandez 2016-present
A Class Act NY: Voice Over 2015
Actors Launchpad: 2015- present
I am rare as are people that rely on ventilators. What makes me even more rare is that I sing and that I survived a spinal cord injury at levels that are still very hard to find today. I survived 20 years with it, and this still shocks me and everyone around me.
I don’t mind speaking about spinal cord injury, drunk driving accidents, and disability. I love singing because I am the only person on a vent that can sing. It is this unique combination that informs why I love talking about disability so much.
I don’t have the use of my body, but I have the use of my mouth, my voice and my mind.. I have sung for Bergen County Special Services, Holiday Express at the Count Basie Theatre, Nikhll Badlani Foundation, and the NJ Fame Game. With that being said, if anyone wants me to speak, wherever I go singing follows. Get in touch!
In the last year, my life has changed tremendously. I finally discovered I’m part of a huge spinal cord injury community. Both in New York and New Jersey, as well as online. I thank Tiffiny and the rest of the SPINALpedia squad for letting me write. I’ve been paralyzed almost all my life and there are not that many pediatric-trach vent patients due to spinal cord injury. So far I’ve met three other people that have been paralyzed under the age of 10 that are either on a vent or once on a vent. One thing I wish someone informed us is what a neurogenic bladder is. I am sure that most people are aware, but if not, I’ll say it again and again. I might as well tattoo it to my body. Just joking! I am way too sensitive to get a tattoo.
My bladder started off as the first type of neurogenic bladder when it just empties. I did have control of it for the first 4 to 7 years. Not full control, but I could tell when I was leaking. Then, around twelve years old I got overactive bladder. I would get UTIs monthly. Now is not as frequent, but I still get them. I took so many cranberry capsules starting from the age of 13 to present, nothing worked. The urologist at the time stopped contacting us from a New York City hospital. Then I turned 16, and started going to Kessler. Now I have a neurogenic bladder that makes me need Botox every three months and for the last four years of my life I have a suprapubic catheter. We had to learn the hard way, and by “we” I mean my mom and I. My main caretaker and confidant.
My mom and I have a very close and unique relationship. If you guys read my book, I am also sensitive to caffeine, so I don’t drink coffee or soda, I drink certain teas specifically for the bladder and kidneys. All of this pain leads to severe depression. After 20 years it has become a lot of BLAH BLAH BLAH. I can’t believe my body keeps changing. For a while the depression with the help of God it has gotten better. I was on antidepressants and now I use CBD, but it is still not enough. I am falling back in my old ways, the depression came back because of the pain. The spasticity is as if it was when I was 9 and 10 years old. Most of my spasticity is cause by …. MY BLADDER! It is a disaster. I thank Spinalpedia for putting up with me, but I ask all of you readers is there anything I can do for neurogenic bladder.
I live in New Jersey and a specialist in my area keeps telling me that I am a very dangerous case. There is an obscene amount of information on the internet, yet it seems like nobody knows what to do with me. I am currently 22 and I keep getting bounced around from one doctor to another doctor like crazy. My life is not as bad as it feels. Readers count your blessings because we are all blessed in our own way. I complain all the time and I make mistakes all the time, but I am trying my hardest to understand what is going on with my body. Spinalpedia is accurate and most of the members who write whether is short or long writings, we know our bodies the most.
That’s why we need the spinal cord injury community to come together, to speak, to fight, to advocate, to study, etc, etc. There is more I want to say, but as for the future. Right now I need someone to tell me what to do for this neurogenic bladder. The autonomic dysreflexia is getting out of control, any updates??? And I am just curious whoever reads this if this happens to you? Has anyone spasmed for an hour? and if you had, how do you control it? Another question for my fellow vent-trach posse does the spasticity affect your breathing? That’s the reason why weaning has been difficult before the pacemaker and after the pacemaker. All the doctors look at me as if I am speaking a foreign language. These are just some of the issues that make the depression worse.
Only my mother and a few of my friends understand. God has been good to me and He has been good to all of us. Feel free to contact me on social media or through my work email which is listed on social media. I am a singer who is on a vent. I love singing and performing always have. Singing is what helps me heal and express, but I also always been a science geek and highly interested in science and the medical field. For which, one of my goals is to be a research doctor. I would love that someone to let me into research. Thank you guys for reading this, I hope I helped you as you are helping me.
The following is a monologue that I authored and performed:
Disabled, yes that’s me. I have been paralyzed for most of my life. All I remember is paralysis. Yes, I cannot move my body the way I want to. I cannot breath without assistance. I am dealing with it. I may not have my health, but I am dealing with it and I am getting stronger. I may have been paralyzed for most of my life, but I am adjusting it. I will fight for disability. I will fight for disability in terms of sex, love, academic, healthcare, and performing arts. I ask you guys and I ask society are we the ones fully paralyzed or are we paralyzed because society limits us?
I am fortunate that I live in the New York, New Jersey area, I ask for improvements. It’s not great but it could be better and it could be worse. I want every state to be handicapped and wheelchair accessible. Presently I am a student, and I’m going to be honest, it’s hasn’t been great but it could be better. I ask society not to limit us. Strengthen the disability not ignoring it. I am leaving here today hoping there will be changes. Keep in mind I am paralyzed because of spinal cord injury or because society not prepared for me. Well too bad, you’re stuck with me. And I am just getting started.
The following was written on the blog of my financial guru, Wade Martin. I’m always thankful for everything he does for me! We also put together a great video you have to watch!
Antonia Sinibaldi was only two when she became a quadriplegic. But she’s always been determined to express herself creatively. See how Morgan Stanley works with her and her family to develop financial plans around their needs.
When Antonia Sinibaldi was two years old, a drunk driver hit her family’s car, changing their lives forever. Antonia became a quadriplegic after the crash, but lives life to the fullest every day. At twenty-one, Antonia is a singer, actress, and author. She has an inextinguishable creative spark. The Martin-Rizzo Group at Morgan Stanley is honored to help Antonia and her family turn her dreams into reality. We know that wealth management is not a simple formula —everyone’s situation is different, which is why we are committed to working one-on-one with clients like Antonia at every step of the way.
[this is republished from my article on Spinalpedia]
The first word that comes to mind about singing while on a ventilator is FRUSTRATION! It is frustrating because I have been paralyzed for most of my life. I’ve been singing since I was five years old but my voice has gone through constant changes. I think I finally understand my voice and what I need to do to sing properly and healthier.
In order to sing to the best of my ability, I need to adjust some of the settings on my ventilator, mainly the tidal volume and the pressure support. Sometimes I even need to use oxygen from the oxygen tank. I know what some of you are thinking, all this sounds like blah, blah, blah but sometimes it sounds like that to me too. Back to explaining, tidal volume is the force of air that goes into my lungs, my pressure support is how much work my ventilator is doing for me. When I increase the pressure support I can hold the notes longer. When I increase the tidal volume, I can belt better and it feels like there is less strain on my vocal cords.
Last summer I had a diaphragmatic pacemaker implanted surgically into my diaphragm. Hopefully, this can help me one day get off this vent. I’m no where near coming off the vent but singing with the diaphragmatic pacemaker with a certain ventilator mode used for weaning makes singing a lot easier. I don’t have full use of my diaphragm but the pacemaker inside stimulates the nerves so I can belt and hold the notes longer without having to adjust vent settings. I’m in more control when I sing with the pacemaker and it feels so good. All of these things is what I need to do to sing without straining my vocal cords.
I sing all the time to escape and express myself. I have done my research and I have met doctors that have never seen a person sing on a ventilator. I feel very fortunate, happy and blessed to be able to have the ability and gift of singing. Singing makes me feel FREE!
It is that time of year again. Fall is here, but for me I’m still in Summer. This past summer I made so many memories. I got in touch with one of my best childhood friends who is like a sister to me, I turned 21, and most importantly, I had a life-changing procedure.
Most of you that know me, are aware that I have a spinal cord injury, and for those of you who don’t know I have been paralyzed since I was two years old. I wrote a book of how it was like to grow up with my injury (you should read my book and learn what it was like to be me). One of the topics in my autobiography that I mentioned is to one day be off my vent and be able to breath on my own. This is where the life changing procedure comes in.
I was asked to write a blog post about what it is like to be able to sing on a ventilator.
That may be a future post. The truth is, I had a surgery called the diaphragmatic pacemaker. The title is self explanatory but because I’m such a saint I will explain what it is.
The diaphragm is the main muscle in the human body for the use of breathing. The diaphragm helps pull and push air in and out of the lungs. Due to my injury my diaphragm doesn’t receive the correct signals. Now I have wires connected to the inside and a plug to the outside of my diaphragm, where I connect a small machine that sends the signals to the diaphragm in order to make the muscle move. It has been one HELL of a process and still is a process relearning to breathe. On a lesser note I tell everybody I’m part cyborg (hint: to everyone who is “A Fault In Our Stars’’ fan, my favorite book!)
Now flash forward to the present. I am still training my body and getting adjusted to this pacemaker. I am exhausted and I hate to say it but I need to take my time with whatever I am doing. This is so annoying!!!! My mind is on speed but my body is like slow it down girl!!!! This is why I am writing this piece. I can’t do as much as I would like to but for now writing can help myself and hopefully others
Note: this is a repost of my article from SPINALpedia.
If you are or know someone that is new to SPINALpedia or new to spinal cord injury, this article may answer some of your questions. One amazing thing that comes with having a spinal cord injury is nerve pain. For those of you who do not suffer from any type of neuropathy, you’re missing out on a huge party. And the party gets hotter depending on how severe your injury is. Not everybody can be invited. You have to be a VIP.
Here are it’s definitions:
– Neuropathy is a disease or dysfunction of one or more peripheral nerves, typically causing numbness or weakness.
– Neuralgia is intense, typically intermittent pain along the course of a nerve, especially in the head or face.
– Peripheral neuropathy is weakness, numbness, and pain from nerve damage, usually in the hands and feet.
I had my accident when I was 2 years old. All I’ve ever known is life with this injury. One thing I notice is that my nerve pain, which causes spasticity, gets worse the older I get. I am not just sensitive to touch, I am also very sensitive to vibration. Vibration bothers me when I am driving in my van more so than at a party or an outing. One way I can describe to you what it is like living with pain and sensitivity is, imagine your body feels like it has ants all over it and those ants have prickles like porcupines. The body is confused and the problem with spinal cord injuries are that the signals in the body are not properly working or being received.
Some people explain this nerve pain as stabbing. There is not just one symptom, or medication to this issue. There is not just one resolution to the problem either. It’s a plethora of options. Exercise is very important for people with spinal cord injury. Think about it this way, the body is trying to move but the signal is not allowing that to happen in the proper way. That’s why exercise is so important. The human body needs to move no matter what. Exercise for me is a double edged sword. When I exercise I spasm and when I don’t exercise I spasm. However spasming after exercising feels better than when I do not exercise. It feels good to move and stretch.
The signal from the nerve pain does not feel as bad after exercising. That is not just me, there are other people with spinal cord injury that have similar results with exercise. Aside from exercise, there are other ways to manage pain. Diet and medication are important for pain management too. There’s food that is good for the nervous system. Trust me, I’ve done my research. I know what I’m talking about. Over exerting the body can increase pain; nerve pain, spasticity, clonus, and rigidity.
I know that the thought of “I can’t do this anymore” comes to mind often when you have a spinal cord injury. No matter how long you have had the injury, it is nearly impossible not to have that thought sometimes. That’s why I am writing about it now. It is not easy to find writings from the patient’s point of view, it is usually the doctors documenting about spinal cord injury.
That is why SPINALpedia is fantastic! All the writings are from people with injuries or close caregivers. It is helpful to hear and read other people’s stories. It really does get better over time.
Note: This is a repost of my first article on SPINALpedia, available here.
Imagine your life is reliant on a single machine that is reliant on a three prong outlet that is attached to an even bulkier power pack, sound good so far? Let’s dive in a bit here..take a moment, close your eyes and picture an unimaginably annoying machine that sounds like an awkward vacuum from the early 90’s, now open your eyes to this awkward long tube of life that is secured by an elastic band that feels like sand paper rubbing against my neck.
If the sand paper feeling rubbing up against your neck didn’t make the hair on your arms stand up, then as always, I like to save the best for last.
To top off the metaphorical cherry on the ice cream sundae, not only is the vent a hefty 30+ pounds but it has has two traveling companions, let me introduce them; thing 1 and thing 2 (queue the musical score from the original cinematic adventure Jaws). Thing 1, being the evil car size battery required to power the vent on the go and last but certainly not least thing 2, where most woman my age have a Louis Vuitton with them at all times, I have this magical cylindrical device known as an oxygen tank which is the perfect addition to every young woman’s entourage.
I am dependent on a ventilator 24 hours a day. Life is difficult for everybody, but being paralyzed from the neck down tends to make things a bit more difficult than usual. The difference between my life and most others is that people can breathe on their own. The ventilator helps me but it is not part of me. Everywhere I go it is on the back of my chair. Ever since I was a little girl I always felt somewhat out of place but with the help of God, he has given me a good life and provided me with purpose.
I have an amazing mother who is my world, my main caretaker, along with family members and nurses. All I have ever known is my injury; I love, I cry, I dance, I sing with my injury. It’s hard to imagine a life without it.
Yes, this vent travels everywhere with me wherever I go but I am not afraid of it and I never let it slow me down. I live life to the fullest. Even though there are moments where I am terrified to be away from “thing 1” a.k.a. the battery bag I never let fear dictate my actions, always pushing ahead. Along with thing 1 and thing 2, my metaphorical Louis Vuitton, I also have an Ambu, “the mascara” that I must keep with me at all times in the off chance that I start arching/spasming.
I can’t pull in the vent when I am spasming so I need the help of Ambu and an oxygen tank.
Life is difficult but it is also a lot of fun. I may be on a vent but I sing and go out to see a lot of shows. Musical theater productions are my favorite. I also love going to concerts. No matter where I go and what I do, I know I always need to be careful but that I also have to continue pushing myself and pushing others around me. Regardless of my “condition” there is nothing that will stop me from being who I am.
Who am I?
Who am I?
Who am I?
Depending on who you ask, the answer will change.
Who am I?
I sometimes don’t even know the answer myself.
Who am I?
What am I?
The answer changes with the situation that I am in.
If I listen to my heart instead of my mind,
I know exactly who I am.
I am a lover, a fighter, a friend, a cousin, a daughter, a sister, a niece, a writer, an author, a singer, an actress, and a dancer…who happens to be paralyzed.
My pain, my body makes me feel so out of place.
All of those parts of my life and my personality are just small portions of who I am.
I am a lover, a fighter, a friend, a cousin, a daughter, a sister, a niece, a writer, an author, a singer, an actress, and a dancer.
But most of all I am A DAMN GOOD SINGER!
All of these pieces make up who I am.
And paralysis is not who I am.
We are shockingly almost done with this spring semester and I can’t believe that I have been at Marymount for almost two years! When I first came, I thought that I did not belong in college or in the outside world. I let my disability get to my head. Having a spinal cord injury has definitely limited me. My injury has left me paralyzed from the neck down. As far as I can remember, I felt like that was all I am – a paralyzed girl. Now, I no longer feel that way.
Right now I am a drama therapy and music minor and a proud member of Marymount’s a cappella group, On a Side Note. On the 19thof February, I had the opportunity to visit the dormitory at Cooper Square and perform with the members of On a Side Note. Though I did not see the whole dorm, what I saw reiterated my feelings of disability inclusivity on the Marymount campus. I am happy to announce that this Friday the 20thof April, I am performing with On a Side Note at Marymount’s Melanin Festival. The Melanin Festival is a celebration of diversity and inclusivity, and our group definitely embodies that diversity!
In my experience, I have found the MMC community to be very welcoming towards those with disabilities. By having a staff member in a wheelchair, and a student in a power chair, Marymount has had to accommodate.
I am grateful that I am at Marymount, where my disability does not define or separate me, but I do wish that more places shared Marymount’s acceptance. According to the Bureau of Labor Statistics, for students age 25 and older, those with a disability and those without attended college in equal numbers, yet those with a disability were significantly less likely to complete college and earn a Bachelor’s degree. Why is it still that students with disabilities are less likely to finish a degree than their able-bodied peers? While it could be due to the limitations of one’s disability, I suspect that it is more the result of a lack of support, image, resources, and encouragement at many universities. For me, I have found that Marymount has encouraged and supported me in a way that will help me to beat this statistic.
I would love to see more colleges and activities adopt the disability inclusivity that Marymount has, and for Marymount to continue to expand and grow their programs and resources for students with disabilities and different abilities, even after my graduation.
This past year has been a wonderful and fun, sometimes exhausting roller coaster. If you read my book, I wrote that I wanted to apply to college, but got rejected by quite a few. Finally this past year I got accepted and have been taking classes at Marymount Manhattan College. Not only am I part of MMC, but I am also a member of the A Capella team On a Side Note. My group and I are a fun, talented family full of youthful energy, making music with our voices. It’s great to be on a team and at a school where you feel wanted. If you want On a Side Note to perform, please contact us on our Facebook page. If you want me to speak or sing at an event or school, please contact me through my Facebook page or my Twitter page, as well as the website. Have a great holiday season!
Welcome to my new website! I am excited to have another place to share my thoughts and interact with others. In the future, look for updates about speaking engagements, events, and some of my musings on life.
I’m excited to announce that my book is complete and being printed! This is a project that I have been pursuing for quite some time, and I am thrilled to share it with you. In it, I reflect on my life up until now – my family, my friends, my education and my outlook, as well as of course the accident, my recovery, and my ongoing struggles. I am excited to share my story, and can’t wait to hear your reactions.
I’ll keep you updated, and you’ll be able to buy it right here, as well as on Amazon.