I had the pleasure of having Brielle Izabelle join myself and co-host, Brooke Alisha on the podcast to discuss her lived experience as a young adult living with Tuberous Sclerosis Complex. Brielle is from New Jersey, is a college student at Fairleigh Dickinson and just launched a YouTube channel. This is the description she includes on her YouTube channel, linked below: “hey everyone! My names brielle Isabelle and I would love if you could join the bbsquad! Here I hope to talk about my disease Tuberous Sclerosis and raise awareness! I also want to make my channel super personal with Q&A’s, make up videos , pranks and more. CATCH UP ON SOME VIDEOS LIKE COMMENT AND MOST IMPORTANTLY SUBSCRIBE AND SHARE!”

My co-host for this episode was Brooke Alisha, Brooke is our TSC Talks YouTube Vlogger and is an adult and parent living with TSC. She is also a TSC Advocate, Adult Regional Coordinator for Adult Support Region 5, LeVel Promotor. She has quite a story of challenges and hurdles, traumatic events, and heartache but also MUCH resilience, inner fortitude, a heart of love and hope and I was grateful to have her jump right in and contribute to this interview with her own insights and understanding of TSC related challenges and add another valuable perspective to our discussion.

As a parent of three offspring with TSC who has been through quite a sampling of the TSC experience in terms of encountering ranges of manifestations, treatments, surgeries, medications, and interfacing with systems of care, I am always learning what I don’t know about another’s personal experience, and grateful to gain yet another glimpse of how others navigate and come through their own personal crises and come to understand and put in place a framework for moving forward and accepting the diagnosis without letting it define them. This was yet one more “schooling” I received on the many colors and faces of this complicated diagnosis.

I am sharing some pertinent quotes that help illustrate the content we discussed. Brielle discussed her greatest challenges growing up with a TSC diagnosis, those being educational and mental health challenges. “You know, I've dealt with school situations, like bullying because of how intense it really was for me, I did struggle. But the school system that I was involved in, they were amazing. And I was able to be super successful in school. I went to my dream college, and education is the biggest way that this has impacted me. And now as an adult, or young adult, I think that it really affected me with my mental health, which is something that I had no idea it would. I think that since my whole life has been relatively stable, I didn't realize that okay, you know, there's other things that aren’t, which has been my mental health, anxiety and depression and things like that. So, I think my whole life, it's really just been my education. But now that I'm an adult, and I'm more in charge of my education, it's definitely my mental health and mental health awareness. So that's the biggest thing and it's affected me a lot to be honest with you”
Brooke also shared her perspective on what Brielle mentions, also tying in TAND, which stands for Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders; “I know like 80% of people deal with a mental illness and you know, sometimes you deal with it worse at different ages. I honestly didn't really pay attention to it when I was younger, because I didn't know, but watching my daughter struggle with the bullying and the IEP s and the learning and the therapists and all that stuff. It is very traumatic for someone to go through at any level. You talk very well, and you are very educated. Whoever has worked with you has done an amazing job. And I think that's incredible growth for you”

Brielle underwent brain surgery at age 8 and states, “So I think that brain surgery was one of those things where I was sort of like, this is happening, you know, what is going to happen after this? How am I going to be impacted, I wasn't educated. All I knew was that, you know, one of my tumors in my brain needed to come out and it needed to come out as soon as possible. So, I think that being who I am today, as well, I could say that if I didn't have brain surgery, I wouldn't know who I was, either. Because that was like my, my greatest achievement, you know, to survive something so traumatic like that. A lot of people don't come out of that. So I'm so blessed. And I think that going through that and now being so healthy today, is something that is just amazing, something that I had to do something that I had to face, I couldn't go around it, I can wait a year for it to be done”

Brooke added, “I'm really thankful you talked about the brain surgery. My daughter had it when she was three, but like, that's what she lives off of…” this happened to me.” I always tell her it does not define you. But it is so hard to get that out of their head when they go through so much stuff and like you said, you blocked things out.” I also would acknowledge how important it is to not let these major medical events that are outside of one’s control define, but give one a sense of passion and purpose having gone through something most people never experience, living through it, and owning the courage and bravery it takes to reorient and not let memory of these traumatic events hold one hostage.

Brooke elaborates on her own challenges with the mental health aspects of TSC, “Nobody understood my mental illness, you know, they were supportive and they kept me going, but until I got older and really dealt with it, I was in my home and wouldn't leave, and it was a really bad place. I was alone, it was devastating to my life. So to see you at 21, just, you know, I know that there still rough days, but you're glowing, you're doing incredible. And I am so thankful that you're reaching out to these other girls. I know that's been a huge support for my daughter, having her camp friends that all had TSC to talk to because you do get very lonely, nobody understands you, they don't even know what to say to you. So they say nothing and then you're left in a hole, you know. So I'm really thankful to hear your story and to hear you rise up from all this. I think it's great. I know there's going to be tough days, like you said, there's no cure, but you have to like rise above that and you're doing very well. You're doing a really good job.”

I would echo that statement and will wrap up with this quote from Brielle on how she came to use journaling and ultimately vlogging to help her process her experiences and cope, “Something that I was actually very opposed to doing because I was so in denial that it would help me is journaling. I had an empty journal in my room that my dad gave me, and I put it all the way in the back of the drawer. And I refused to even write my name. I didn’t even want to draw in it. I did not want to even think about putting my feelings down. And one day I was feeling so terrible. And I said, I just want to get this out, even if this is the first and last time that I write in it, and ever since that day, I have not stopped writing in it every single night. Just like Brooke said, I will write, “you got this now, tomorrow's gonna be better.” You know, ask yourself the question, like, let me know how tomorrow goes and then tomorrow I'll write down today. Especially now that I can't see my therapist, I need a means of releasing how I've been feeling and I actually made a video about anxiety and depression as well. Writing in the journal and giving yourself motivational words, you know, it doesn't have to be something cliche or something that someone else told you. It’s something that is individualized to you. So yeah, I write like 15 pages written ..or I'll write like three pages a day of just thoughts and thoughts. And sometimes my hand will cramp up and I'll say, wow, you know, today was a rough day. Just go for something. Because sometimes it's just, very hard”

Both these two women are powerful examples of coping with some off the beaten path challenges that few will encounter in their lifetimes and both have chosen to accept the fact that they have this condition, are not letting it define them but remain grateful for being able to be here now and find joy, meaning despite the daily roller coaster of circumstance. Tools mentioned for coping are journaling, vlogging, connecting with others that can relate and a lot of self-love, self-compassion and reminders on the mirror of just how awesome they are. Because it is so true. I was inspired and moved listening to both of these women and am glad to share this episode with my own daughters, as well as many others within and without the TSC community, who have dealt with and are dealing with similar issues related to self-esteem, mental health, and staying positive in this crazy world we live in.

This episode is dedicated to my friend Paul Collins who passed away recently. Paul was a unique and inspirational individual I met in the local 12 step program when I had hit a personal bottom dealing with addiction and mental health stressors that led to a serious psychotic break. Paul inspired me to live the wisdom of the saying, “you’re only as sick as your secrets” which in part inspired the creation and evolution of this podcast. Thanks for listening!

Brielle’s links:
YouTube: https://www.youtube.com/channel/UCfFMGjj9KrOFG-k1d-MKXjQ
Facebook: https://www.facebook.com/brielle.izabelle

Brooke’s links:
Instagram: https://www.instagram.com/_brookealisha_/
Facebook: https://www.facebook.com/brookey21
Twitter: @BrookeAlisha