Show notes
I had the extreme honor of interviewing Brooke Alisha, TSC Advocate, Parent, Adult Living with TSC, 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.
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 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...
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 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...
