TSC TALKS GUEST BROOKE ALISHA
I had the extreme honor of interviewing Brooke Alisha, TSC Advocate, Parent, Adult living with Tuberous Sclerosis Complex, Adult Regional Coordinator for Adult Support Region 5, LeVel Promoter. 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.
Diagnosed with Tuberous Sclerosis Complex (TSC is a condition that causes benign tumors to grow in different organs of the body) at the age of 18, Brooke gives us a picture, “I was very active. I was a cheerleader. I was in a precision ice skating team. I was very active in my church. I was in a traveling singing group. We had so many things. So for me, my life was.. always on the go and involved in something, a part of something and suddenly, I was on Darvocet and it literally brought me to my knees. I was in the middle of hair school. I had just started after I graduated. And I missed three months. I had to take medical leave because I couldn’t get up. I was afraid to hurt my kidneys and the stent and that whole thing and then on top of it being on that medication. That was the start of everything really for me.”
She talks of the utter devastation that followed post-diagnosis, “you looked at Google, you know, or Web MD or something. And it was like, awful. And I’m like, how can my life go from this to this? How am I supposed to (go on) and that it just made it worse”?
After moving in with her boyfriend and withdrawing, there was more challenging news, “And so when I went to go see about the cysts on my ovaries, I actually found out I was two months pregnant with my daughter. So I did have this on my ovaries, but they’re like, um, you’re pregnant, and we’re going to put you on Prozac because we don’t know if you’ll handle the baby or if you’ll keep it or anything”
To make things more challenging, she now had doctors weighing in, “She told me she advised an abortion and I wasn’t okay with that. It wasn’t how I grew up personally. And I thought, there’s a reason I’m having her. So, I’m going to just have her and I’m going to get through it. And if I lose her, then it’s meant to be I had to live with myself personally.”
Her baby daughter started having infantile spasms at 4 months and was diagnosed with TSC. She gives us a look at the inner experience of these circumstances and more challenges, “I guess I was so young, you know, I was scared to death of what was to come and she had just got diagnosed with Tuberous sclerosis complex, she has the seizures and they started to get more intense. And they were up to about 10 to 12 times a day, we started to have to digest that. Then I found out I was pregnant with my son, so it was a lot.”
Listening to Brooke and reflecting on my own experience, “I can relate to some of that, you know, I was getting pregnant and finding out at while I had other kids with TSC, and you know, I think back on those times that I don’t remember the details. It’s like talking to you, I just kind of remembered that craziness. You know, it was always like kind of living through at the moment and getting through the day and, you know, putting out brush fires one thing after the other, so I don’t know if it was like that for you, but I didn’t have a lot of like time to really reflect on what was happening and how I was. It was just so much action-reaction.”
Brooke shares more of her experience with her daughter, “she had brain surgery, a lot of people know the intensity of that, it’s a six-month thing. To get tested and all of this stuff done and, you know, it kind of all becomes a blur and then you spend about a month in the hospital because they’ve got to do two surgeries. And we did get social security disability income for that month that I was off, but it was exhausting. I had a son at home. She wasn’t going to the bathroom by herself. They told me about the social regression, they removed her right frontal lobe of the brain, all the executive decision making”
She also discusses waking up to an understanding of TAND, Tuberous Sclerosis Associated Neuropsychiatric Condition, both personally and with her daughter. 80-90% of individuals with a diagnosis of TSC will have some degree of TAND, manifesting in a myriad of different ways, encompassing the entire mental health diagnostic umbrella!
“And you just fix it and you figure it out. But you know, for the longest time, everything would defeat me. Because, you know, for me, 80% of people with TSC have a mental illness, TAND is something I didn’t even know what it was, and I feel like it’s not talked about enough. It’s not expressed enough. It’s not shown to families like okay your child might have TSC but look out for TAND, they need to be prewarned for this because you have no idea it will come hit you like a bus.”
Here’s an excruciating narrative outlining a TAND incident, “It seems like with these medications, so for her anti-psychotics make her psychotic. And we were like afraid to drive home. We were hoping a cop saw us and said let me take her from you. I have never been that mom that wishes anything on my children ever, ever ever in my life. I know I talked previously about not dreaming of being that mother or that Betty Crocker person, but I definitely am a person that when I have something, I go all out and I go all in. If I’m going to take care of something, I’m going to take care of it the way it needs to be taken care of. How do you take care of that? I didn’t know how to take care of that situation. That moment. Everybody’s lives are in danger. My son was being choked from the back. It was very traumatic.”
So clearly, Brooke is a survivor, with resilience like no other. She narrates example after example of circumstances that are unimaginable and yet she continues to rise.
“And you know, for the longest time I lived as that victim like …victim, victim victim and I decided I wasn’t going to live there anymore. And once you decide that you must be at a really big place where you’re like, you know, I’m ready. Because you’re going to get tested and you’re going to get tried, and it’s going to try to break you, but you have to just rise up really. But you have to be at that place, and I can’t tell you how to get there other than feeding your mind with happy things and good things. I started working out. So I started to try to do things that would help my mental health I went seek counseling. I just I started to really like being a hairstylist too, you’re also a therapist. So, you need to have an out. I needed a healthy out for sure.”
Brooke uses premium nutrition, continues to consult with her doctors, and this system has worked for her, Thrive, “a premium lifestyle plan to help individuals experience and reach peak physical and mental levels” and has great results. She continues to promote this product as a side business to supplement her work as a hairstylist/beautician and focuses on helping people feel beautiful inside and out. Having the opportunity to give her clients a little bit more in terms of offering a product she has had success with and believes in has been a wonderful way of infusing her work with her own lived experience and positive energy.
This episode is chock full of inspiration and hope despite multiple and ongoing challenges. I’ll leave you with this final quote, and encourage you to listen and share this incredible testimony to the power of the human spirit, faith and deep passion and love for her family, friends, committed to doing her best to push the needle of knowledge, education, and support for those living with TSC forward daily!
“I mean, there’s been lots of like little miracles, you know, like as you go on, like, Oh, she can read now. And for me, my tumors went from four and a half centimeters down to nothing. So yes, so that’s been amazing, but just the miracle of being 36 now and being told at 30 I’d be in a wheelchair like that’s a miracle. And when people see me and do that stuff, I want them to know that it’s never too late. You still have a life to live!” Bravo Brooke!
Brooke’s links:
Instagram: https://www.instagram.com/_brookealisha_/
Facebook: https://www.facebook.com/brookey21
Twitter: @BrookeAlisha
Adult Regional Coordinator-FB group: https://www.facebook.com/TsAllianceOfOhio/
TS Alliance Regional Coordinators: https://www.tsalliance.org/individuals-families/adults/adult-regional-coordinators/
Brook’s hair services: https://www.facebook.com/brookesbliss13hair/
https://www.facebook.com/thecolourpalettesalon/
Thrive/Le-Vel: https://brooke2330.le-vel.com/
Thank you for listening. All of our podcasts can be found at www.tsctalks.com/podcast/