Meet Luci Capo Rome

Alright – so today we’ve got the honor of introducing you to Luci Capo Rome. We think you’ll enjoy our conversation, we’ve shared it below.

Luci , thanks so much for taking the time to share your insights and lessons with us today. We’re particularly interested in hearing about how you became such a resilient person. Where do you get your resilience from?

I got my resilience from being born with craniofacial difference.

Having craniofacial difference, I have learned to survive many challenges since my birth which have led to my buoyancy throughout my life journey and I never gave up! Embracing myself at every turning point. Which was not always easy.

I am an older adult woman who was born with a bilateral cleft lip and palate. This included the absence of my hard and soft palates and missing bone where our front teeth are inserted and a distorted nose. My upper lip was totally open on both sides. Craniofacial involves the skull and the face. Facial involves the face.
My face does not define who I am as a person. I enjoy being and looking different. Feeling attractive in my own way.
I learned to be resilient when I endured the many surgeries, speech therapy, procedures and specialized dental work. By the way, the specialized dental care continues, today. As a child and young adult, I went along with what it took to increase my quality of life, to eat, drink and breathe better. I attended speech therapy every week from ages five to ten when I was told that I didn’t need it anymore. That felt so good! I felt so proud of myself.
The psychosocial part of my story started when I was growing up in the 1950’s and sixty’s. My shocking birth brought shame, guilt and embarrassment to my family. No one talked about it as if it wasn’t there. There were many secrets back then. Mental health issues were connected to weakness of character. I was told that I had a “hare” lip,” a term based on superstition and ignorance and is considered derogatory, today. Imagine a woman with facial difference who has learned to persist in the world. I walked down the street with my head down, feeling shame and guilt for my appearance.
Teachers and other adults told me I couldn’t make it to be a professional nurse. I proved them wrong. I excelled and became a family practice, internal medicine and psychiatric mental health nurse practitioner and a nursing instructor. My service in the health care arena lasted for over 47 years until my retirement.
During my early thirty’s I pursued professional counseling and was questioned by my mother. Despite her negative comments, the counseling continued and helped me to open my world. I have searched out those persons who believed in me and knew that I had the guts to pursue what I desired. Learning to love, accept and respect myself. The work paid off!

Thanks for sharing that. So, before we get any further into our conversation, can you tell our readers a bit about yourself and what you’re working on?

I am a successful and compassionate, retired nurse practitioner who is cleft affected and delighted to reach out to other mature/older adults affected by craniofacial/facial difference with an informative article or video. Letting them know they do not deserve to be alone and isolated from the community. Providing valuable information to benefit them; a means to connect as we share our stories and celebrate who we are! I am an advocate for this special group of individuals. My passion is to improve their quality of life. Letting them know that they need to be seen and heard.
My history includes thirty-four surgeries from birth to age 51, speech therapy, intensive dental care that included oral, maxillofacial and prosthodontic procedures. The needed care for those affected by cleft lip and or cleft palate is ongoing throughout one’s lifespan. Due to the lack of upper, front jaw bone, scar tissue and lack of front teeth, I must wear a prosthetic bridge for the rest of my life that must be replaced about every 14 years. It assists with my eating, drinking, speaking and my self-esteem. Due to the psycho-social issues of anxiety, melancholy, bullying and lack of support during my growing up, I attended counseling for many years. My published memoir called Lucia’s Story: My Imperfect Beauty by my pen name, Bella Lucia proclaims my inspiring and triumphant tale over having facial difference.
My mission is to assist this community to receive support from the community and beyond. I have been doing research and found only one article from “The Cleft Palate-Craniofacial Journal” published in 2015. A qualitative study that was done on cleft lip/cleft palate affected adults from age 57-82. The article centered around feeling isolated at times and having little contact with other people with a cleft. In addition, it was mentioned that healthcare could be more considerate to the needs of older persons with a cleft, particularly around dental care and providing information about it. Many participants in the study felt ignored because of their age. I also pursued more articles that emphasize other issues such as altered hearing that is ongoing for those with cleft lip and palate and during aging. My concern is that isolation may lead to depression and anxiety.
I am a member of Smile Train’s Cleft Community Advisory Council and their Leadership Board. Smile Train is the largest cleft-focused, charitable organization providing many procedures and necessary care in 90 plus countries and domestically. I will be speaking at their Cleft Con in July, 2024. Check out their website: www.smiletrain.org. I am also involved with My Face, another organization that supports the craniofacial/facial community. Their website is www.myface.org.
I am also an advocate for the “Ensuring Lasting Smiles Act.” A bill needing to be passed by Congress and the Senate in order for all health insurances to cover the necessary care for those with congenital anomalies. I will be returning to advocate in Washington, DC, on “The Hill” with many others from around the US.

Looking back, what do you think were the three qualities, skills, or areas of knowledge that were most impactful in your journey? What advice do you have for folks who are early in their journey in terms of how they can best develop or improve on these?

Three qualities most impactful on my journey were:

1. Believing in myself with the support of others who believed in me and what I was capable of achieving. My advice is to gravitate toward people that you feel good being with and that you feel support and accept you for who you are.
2. Being an inquisitive learner is what got me into nursing and medicine. I was always ready to learn new things and was never afraid to get my hands dirty. I enjoyed observing my first autopsy as a nursing student which I will never forget. I love being a lifelong learner! My advice is to never stop learning new information. Learning is fun!
3. Embrace yourself and hold on tight! When I think of embracing myself, I am being kind to myself, recognizing I have much to share with others through my advocacy of the older adult with craniofacial difference. My advice to embrace yourself, remembering that you are a gift to others when you are kind to yourself. Then your kindness expands into the universe. Be involved in activities that give you joy. Mine are dance, writing, yoga, fitness, being in nature and travel.

Awesome, really appreciate you opening up with us today and before we close maybe you can share a book recommendation with us. Has there been a book that’s been impactful in your growth and development?

The Four Agreements by Don Miguel Ruiz has played an important role in my life over the years. In fact, I keep them written down in the front of my daily journal for quick reference. One of the agreements, “Don’t make assumptions” is so good as it reminds me to stay in the present and ask for what I want which can be my challenge. Another agreement is “Always do your best” which is my motto to be my best self.
The next one for me is “Don’t take anything personally.’ To me this is a ticket for freedom. Knowing what others say or do has nothing to do with me. Lastly, “Be impeccable with your word.” For me, this one is about being truthful with my word as I speak with sincerity.

Contact Info:

Image Credits

Those in my photos are myself, my husband, Dick Rome, also known as Ricky and our dog, Gracie, also known as Zoe..

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