Introduction: A personal note from the writer
In March, I had the wonderful opportunity to interview Utako Kawakami about her experience speaking at the TEDxICU Bloom 2022 event in early January 2023. After attending the TEDxICU event, I felt inspired by all of the speakers’ talks, especially Utako-san’s.
The TEDxICU event was well-known in the ICU community and amongst those who follow their Instagram account. However, it was a shame that people outside the community might not have been aware of the event or could not attend.
What captivated me the most about Utako-san’s speech was her powerful message about overcoming obstacles in life and her courage in being vulnerable to share her personal experiences.
Her story inspired me, and I hope this interview article inspires others. Please check out Utako-san’s and the other speakers’ talks!
TEDxICU website (all previous TEDxICU talks are uploaded on their website!)
— To start, please introduce yourself and tell me about your background.
My name is Utako Kawakami. I am a junior student going on to my senior year in April at ICU. I’m double majoring in Law and Sociology. I am currently the co-representative of a student organization, Map the Better, which used to go by Voice Up Japan ICU.
I was born in Germany but only stayed there for less than a year, then moved to many places. So, I lived almost half of my life abroad and half in Japan. I have lived in Canada, the US, and Brazil, then returned to Japan for high school, where I attended ICU High.
I have lived in the US since I was two or three years old and attended public schools there, where I learned to speak English fluently. And because my whole family also spent their childhood abroad, we mix Japanese and English within the household. Because of this, my Japanese and English speaking levels are about the same.
— What prompted you to become a speaker at the TEDxICU 2022 Bloom Event?
A friend of mine recommended me because of my background and story and also considering the period when the event would have been held was when I was supposed to study abroad, but I couldn’t. I have this background and story but never told it to a large audience, and I wanted the chance to do that.
I used to be a TEDxICU member and was recommended while still being active in that student organization. But because members are not allowed to be speakers, there was quite a lot of discussion about what I should do. After leaving TEDxICU, I went through the screening process and became a speaker.
— How did you feel during and after the TEDxICU event?
It was honestly really incredible. I knew that a lot of the people that are close to me listened to me. I guess it feels great to tell your own story, which you don’t have a lot of chances to do, so it felt refreshing. It also felt like I finally had closure on this hardship.
At some points, I got nervous, like when I noticed that it was my first time talking to such a large audience face to face and because I had to remember this 15-minute speech, which I had never done before.
But all in all, I could get through my speech without any big mistakes because the TED team supported me well, and I had many opportunities to rehearse on campus. The TED team is like a second home to me, considering I was a member a year ago, so I felt at ease.
I got a little emotional during the speech considering that I was speaking to people close to me when I was diagnosed. I held in my tears and emotions and finished my speech.
“A blocked path can lead to new possibilities.”
Utako Kawakami, TEDxICU Bloom 2022, January 2023.
— Your TED talk mentioned how “a blocked path can lead to new possibilities.” How did you overcome the initial challenges of being diagnosed with Takayasu arteritis, and how did you realize this motto?
Initially, I was going through daily life without being overly conscious about overcoming the difficulties with my symptoms.
One of my biggest motivations and motto was not to let this illness define who I am. I have kept that in my heart ever since I was diagnosed. So that’s what pushed me to accomplish challenging things. For example, even though my symptoms mainly involved leg pain and fatigue, I would try to perform at the school festival in the dance club. It was really painful, but I still wanted to do it. This applies to all cases, like studying hard and trying new things. I didn’t want to be this girl with this disease; I wanted to be recognized and known for what I do.
A few years later, looking back, I realized I had come further than I would have without this disease. Strangely, my frustration fueled my motivation to challenge myself. That’s when I realized that dealing with the disease made me overcome obstacles and that a blocked path can lead to new possibilities. Ever since then, I made that my new motto.
“My frustration fueled my motivation to challenge myself.”
Utako Kawakami, TEDxICU Bloom 2022, January 2023.
— Did you ever want other people to understand your situation? To open up and get more people to understand and help support you? How open were you with your diagnosis?
During high school and my first year of university, I didn’t like opening up about my disease because I didn’t want it to define who I was. I felt like revealing that I have a condition would change the impression of who I am, or that would be what people remembered me by.
But there was a turning point when I published an article on HCICU, commemorating the Japanese National Nanbyo (incurable disease) Day. I wrote about incurable diseases and the fact that not all conditions can be seen, and people with conditions go through daily life hiding their pain, and I also wrote about my experiences.
I received messages from 5-6 people saying they were encouraged by my writing and appreciated my opening up. One person said they had never told anyone about their disease because they didn’t want people to know. Still, because of my article, she realized that having a condition was not embarrassing and wanted to start opening up about it. That is when I realized the significance of sharing my story.
I don’t go around babbling about my disease to people, but I would tell them honestly when asked about it. During class discussions, I occasionally share my experiences with having a condition to make a point. It’s not like I want people to help me, but I started opening up because it’s not embarrassing; it’s part of who I am.
I was liberated from my initial motto, which suffocated me because it made me feel I shouldn’t tell people. Now I realize that opening up might be helpful depending on the occasion.
— Is there any message that you would like to share with the readers?
While preparing this speech, I was concerned about whether my story and message would come across as arrogant because some people have a harder time than me. My TED talk is based on my hardships, but some people’s hardships stop them from achieving things.
What I wanted the significance of my message to be wasn’t that “even if something bad happens, everything will be okay” or “ you need hardships to grow”; I wanted my talk to be an inspiring moment for people to feel free to be vulnerable and proud of the difficult experiences they had in life, and realize that no matter how it has affected them, I hope my words encourage them to look back on their life and acknowledge their hardships and to comfort themselves for going through them.
— Now that you have completed the speech, what is your next step?
My first goal is to start up a new organization. Voice Up Japan ICU was an essential platform for many ICU students to learn and express their opinions and struggles. We are currently in the process of rebranding the organization as Map The Better.
I also plan to become a journalist once I graduate to deliver people’s smaller voices to the world, providing a platform for people who can’t get up on a stage and tell their stories as I did. And not just people’s stories but about societal issues and maybe happy news.
Now that I have shared my story, I want to help others share their unique experiences.