Tell me about yourself! Where are you from? What are your favorite hobbies, music, colors, or food?

A: My name is Aliyah, which is an Arabic name that means rising, ascending, exalted, supreme (it also has Hebrew origins). I was born in 1989 and diagnosed with Cystic Fibrosis after complications at birth. I live just outside of Philadelphia, PA, where both my mom and dad’s families have lived in and around Philadelphia for three generations! I am half Italian and half Jewish, but my parents were yearning for some deeper understanding and love and community (hippies) and found a spiritual teacher who spoke about the universal truths within all religions. They found themselves back in Philadelphia, got married, and raised my brother and I here. My brother does not have CF.

I have a BFA in Dance from Temple University and a Master of Social Work from the University of Pennsylvania. In a private group practice where I’m working towards my LCSW and registered play therapy credential, I see children ages 4-14 for therapy. I have been married for 5 years, and we have a cat and a dog.

I love southern Indian foods, and enjoy learning Ceylanese curries and dishes. Favorite colors are Carribean blues and fall hughes. Gardening is my most favorite hobby these days - we harvested a huge amount of sweet potatoes in an experimental garden bed along our back alley! I am also very into landscaping with flowers and plantings that provide year round interest, designing groupings for flower pots too. I play mahjong with my mom and the most fun gals a couple times a month. We kibbitz and nosh (yiddish) on snacks and laugh a lot. I’ve been listening to a 90’s pop rock playlist on Spotify lately. Some favorite songs: Dream by The Cranberries, Kiss Me by Sixpence None the Richer, She’s so High by Tal Bachman, basically like the entire soundtrack to Clueless and 10 Things I Hate About You lol.

How did you discover Breathe Bravely? What value have you found in the community and how is that community connection important to you?

A: I think I discovered Breathe Bravely from the list of Impact Grant recipients on the CFF site back in like 2016. I was taking some time off from grad school to recover from a bad case of pneumonia. I started taking singing lessons with Maren. Singing with Maren became a light in my weeks of IV medications and pulmonary rehab. I spent most of my life dancing ballet, and there was something about learning the technique of singing that connected me to that artistic muscle again. In my therapeutic practice, I started learning about polyvagal theory. “Polyvagal Theory emphasizes the role the autonomic nervous system - especially the vagus nerve - plays in regulating our health and behavior” (https://www.polyvagalinstitute.org/whatispolyvagaltheory). By applying this theory to my life, I started to understand how safety, co-regulation, and connection are essential to a healthy human experience. I learned and experienced how singing is a tool that actually stimulates the vagus nerves. “Vagal tone can be improved naturally through stimulation with techniques that can be done at home. Working to strengthen your vagal tone will help with mood, digestion, and overall well being” (https://theholisticpsychologist.com/vagus_nerve_a_path-to-healing/).

I then joined sINgSPIRE and that was the first time I was with other people with CF. I’ve since participated in 5 virtual choir projects with Ashley and through other spaces like FIKA, so I’m starting to really find community with others who have CF from all over the world. It’s been really meaningful and singing is a healing modality I never really knew I needed!

Did you always have a love of music/singing or did that blossom after participating in sINgSPIRE?

A: I loved being in school plays growing up and wish I continued with musical theater past 6th grade. One of my closest friends would always bring me along to Broadway shows in the family packs her parents would get. Although I didn’t get to see Rent on Broadway, the soundtrack was my absolute favorite. As my lung disease started to progress, I found myself withdrawing and growing quieter. Singing gave me a sense of freedom and lightness, even if only for just a minute.

You’re working on building a new community with your Wellness Collective! Tell me about how that idea got started and what inspired you to pursue it.

A: I was struggling with my mental health after I started Trikafta back in 2020. The symptom relief and stability was miraculous and yet I was more unstable than ever emotionally. Transitions have always been difficult for me, but this one shifted me into a different space entirely. I grew up with the trauma of a looming uncertainty that is the reality of having a fatal disease diagnosis from birth. The fear and anxiety was conditioned from birth. My parents developed a hypervigilance and I did too. I was coached from a young age to take care of my symptoms and illness to survive. Every decision was weighed carefully, and CF was always invited to the table. So now fast forward to this cure-like dream and I was spinning out feeling out of control and stuck, uncertain and disoriented, like I didn’t plan for this, now what? The newness of Trikafta scared me. I think I was worried that all of the experiences with this disease were the pieces that gave my sense of self meaning and I felt my worth would be forgotten somehow. I began to find my footing on a low dose of Lexapro and learning new ways of managing. My process of individuation was evolving, I found new ways to stretch my window of tolerance, as I worked with children who were learning new ways to regulate their emotions.

Through this new collective, I want to create an opening for people with CF to find connection, creativity, and go deeper. I know we are a deeply feeling community, and I want to embrace the richness and complexity of our lived experiences with this illness while supporting each other as we try to navigate this new shift.

What do you want people to get out of this group for adults with CF?

A: Emotional humility, maybe a reframe or two, maybe picking up a new way of coping or a new approach, a sense of more community, and connection.

What fuels your soul and gives you joy?

A: Working with kiddos in therapy gives me so much joy. We laugh together and with the trust of their parents create a safe place for them to just be and witness the mystery and beauty of their transformations. My brother is hilarious and there is nothing better than being with his generous and loving heart. Gardening, cuddling with my husband and Sammy with Boots perched somewhere in the same room, going for walks, nature, prayer and meditation, spending time with my parents, swimming in the ocean, bike riding down the shore - all of these activities are restorative to my soul and bring me great joy.

Random question: What is one place you have always wanted to visit and why?

A: Turkey! Istanbul to see the Hagia Sophia. Cappadocia to see the hot air balloons (won’t fly in one though!). I want to swim in the clear waters of the Aegean Sea and be immersed in a different language with a rich culture and delicious foods.

Finally, tell me a message you want to leave with those reading this right now.

A: One of my favorite poems:

“This place where you are right now, God circled on a map for you. Wherever your eyes and arms and heart can move against the earth and the sky, The Beloved has bowed there - knowing you were coming.” - Hafiz

*Today’s Breathing Room content brought to you by Elena Goodrow in conversation with Aliyah Novelli.

CF Wellbeing Collective INFO

The program is designed for young adults (ages 18-35) living with CF and on modulators, and focuses on:

Learning and applying mindfulness skills
Increasing emotional wellbeing
Exploring identity, especially the impact of CF and the introduction of modulators on identity
Clarifying values and goals
Protecting and maintaining your wellbeing through boundaries and self-compassion
Connecting with others managing the demands of adulthood and life with CF

The program runs on a monthly basis from January 2024 through June 2024 and includes six 90-minute sessions via Zoom, with time to check-in and support one another as well as weekly topics and skills handpicked for the unique challenges of life with CF.

If you are interested or know anyone who is, the next step would be to complete this brief form or email us directly at cfwellbeingcollective@gmail.com.

Interview Series with Aliyah Novelli, creator of CF Wellbeing Collective