10: Olivia Lewis
Join me for an interview with Olivia Lewis, who survived a brainstem strokes and locked-in syndrome when she was in college at 21. She reframed a devastating event with grace and transparency. Olivia’s advocacy work hopes to help others understand what it felt like to be locked-in without anyone being able to understand you while cognitively she could understand everyone else.
The human spirit is very strong and Olivia is a wonderful example of embodying that spirit.
“I couldn’t move, couldn’t breathe, couldn’t swallow, I couldn’t speak on my own. I felt like I was buried alive. Locked-in syndrome is a rare neurological condition that paralyzing every muscle in the body except for movement of the eyes. But it leaves cognition fully in tact.”
“My thoughts were racing. I was able to process. I wanted to scream so badly, but I was unable to express myself in any way. I was silently screaming in my head.”
“I was given a very bleak prognosis. After 3 months in rehab I was able to maneurver my wheelchair with my index finger.”
“After 6 months more I was able to walk out on crutches.”
“Before my stroke I saw the world in black and white; so fixed. I had to start learning to lean into the gray area. If I wanted to make this recovery happen, I couldn’t look at it as black or white. There where periods of time where I plateaued, when I didn’t make progress, and times when I progressed.”
“I was studying advertising in college. I wanted to be a copy editor with some graphic design. I think all of the skills I learned in advertising have really benefitied me in my life now. I’ve worked on my own personal brand. I’ve put videos & images into the world about my story and recovery journey and that’s the way I connect to other individuals going through traumatic events.”
Tell me of a moment where you were able to communicate - the first brief glimpse of being able to communicate & how that felt having somebody understand how you felt?
“My family had done their own resource through a letter board to my hospital room. For the first time with that first sentence I felt like I found my voice. All the thoughts and emotions I was able to communicate. Many sentences were from the night of her stroke which I remember to the minute. No one knew what had happened to me including the doctors. I was filling in all the blanks on what happened.”
Did you find yourself editing things down because it was so tedious?
“I had so many long drawn out things I wanted to say, so a lot of things I wanted to express I didn’t. It would take so much time.
After 6 months I could use my phone. My OT had a sling to the ceiling to put my arm and dangle my arm over the sling. Dangle my arm over the keys to type out my message.
I have all my journal entries from that time in my notes app. I got very fast and type out all these thoughts and feelings.”
Tell me about your book?
“For the book I’ve gone back to get pieces of information. The book is a much harder process. If I ever recover from the stroke I’ll write a book. I tracked akward conversations which there were a lot. I banked all of them to include in the book. I really want to share all that I was thinking at that time. You’re on tik tok and instagram. I think it’s very important for people to visually see where I was. I think you hear it and don’t really understand. It’s very important to put images and photos from that time so people understand.”
“I documented with my followers: today I walked X feet, or I put my shirt on by myself.”
“I didn’t want to have photos or videos of me at that time, but my Grandfather was instrumental in my recovery. He was in mental health and rehabilitation health therapy. He’d shown patients video on their progress to help motivate them. He took all those photos and videos and I’m so glad that he did. I’ve shared them and connected with people all over the world.”
What advice would you give to somebody who just had brain injury? My advice would be to trust the process.
“I really believe you have to understand recovery is not going to be a straight line. That was really hard for me to understand. I wanted to speed through it, but that’s not how it works. I had to trust it would all work out and it did. I got through the worst of it and am in a much better space in my life. When you want to give up, that’s when you need to keep going.”
What advice would you have for caregivers and family?
“I would say to really be patient and they are giving all that they can give. You need to be patient with your loved ones and also with yourself as a caregiver patience as well.”
If you could go back in time to your younger self before the stroke?
“I would say know that it’s going to be ok. Life’s going to be ok. There are going to be obstacles. The future is so ambiguous. I was scared there was so much ambiguity. You need to reassure yourself that it’s all going to work out, it’s going to be ok.”
“Before my stroke I saw the world in black and white; so fixed. I had to start learning to lean into the gray area. If I wanted to make this recovery happen, I couldn’t look at it as black or white. There where periods of time where I plateaued, when I didn’t make progress, and times when I progressed.”
— Olivia Lewis
To learn more about Alison: website youtube
Available on Apple Podcasts and Spotify. Thanks for listening! Please leave a comment below.
Music for the thought echoes podcast created by Andy Dovey of Brain Attack Music. Thank you Andy!