Like most things in our friendship after college, this comes late, drenched in procrastination. Like how you almost never replied to my e-mails despite being an advisor to Able Community (the non-profit housing cooperative we were starting together), even though I know you read every word I wrote.
Amber, Carmen, and I on Skype for an Able Community meeting. Photo Description: A screenshot of a video chat between 3 young women in power wheelchairs from 3 different locations.
It was so easy in college, when we lived in the same dorm. We could talk while we ate about the most random things (like how you named each of your boobs) and I could barge in your room to ask you something whenever.
We talked on AIM after we both graduated, commiserating in our mutual miseries—my hatred of law school and the challenges of having to depend on my mom for my personal care again, and your frustrations of having to live with your parents because you couldn’t find enough personal care assistants in Chicago for grad school. I guess we both got busy and I stopped using AIM, so our contact dwindled.
With the exception of one year in fifth grade when we moved to a new neighborhood and everyone in my new class wanted to be my friend (don’t ask me why), I was never in with the cool kids. Even in college when I lived in a dorm with a majority of students with disabilities needing personal care and a few live in personal care assistants students, I never quite fit in or was popular.
You never made me feel excluded or that I wasn’t cool enough to be around you, although you were a grade younger than I was and one of the cool kids of the dorm. I would go watch movies in your room after you got into bed and asked if you needed anything as I wheeled out. When I said that I wanted to smoke pot before graduating, you agreed and made it happen.
I was surprised at the connections to “the good stuff” that we already had in the dorm and that I was able to inhale from the pipe, as a group of us took turns inhaling from it outside on the patio of our dorm. I’ll always remember that one of the personal care assistants helping us answered her phone, saying “I’m helping the gimpies smoke pot.”
I was surprised that you talked about our first time smoking together in front of your mom years later when we went to a mutual friend’s house for a party; somehow it felt like the years we didn’t see each other vanished and we just continued where we left off. My parents would still kill me if they knew about this; they even oppose medical marijuana. Good thing they don’t read my blog.
I can’t believe that it’s been almost 2 years since I was on my way to see you because you were in the hospital for pneumonia when your sister e-mailed me not to come; it was too late. I got that e-mail the day before I was going to visit you with flowers, right before my meeting in Springfield. I really regretted waiting to visit you when I was conveniently in the area for my Springfield committee meeting to see you; I still do.
I didn’t think it was that serious and even jokingly e-mailed you weeks earlier that I thought I was dying when I had pneumonia, but that I was sure you’d pull through; I shouldn’t have joked like that. Honestly, when I met a group of our college friends I saw when I visited Chicago, we’d go over a list of our friends who we were concerned about health-wise and your name was never on the list. Even though we knew that you had muscular dystrophy (MD), a genetic disability that’s progressive and can result in an early death, you seemed strong. You were healthier than I was in undergrad, I was always getting colds and what have you while you never seemed sick wearing a college hoodie instead of a coat in the winner.
When I decided not to write another blog post or edit another video until I posted yours, I had no idea that it would take me so long. Part of it was probably unconsciously choosing to delay dealing with the finality of your death, and part of it was wanting to caption your video so it would be accessible to everyone. When I finally decided to post it for your family without the captions, I lost my Macbook battery power charger that had the video on it and my Youtube password. I finally bought a new charger and found the password… I sent it to your family a week ago and I finally figured out the captions!
Here’s the link to the video: https://youtu.be/CTnulPHgMVM.
Watching this video interview we did the last time I saw you a year before you passed away made me regret not asking you more important questions, not just promoting Able Community… like about your Ph.D. dissertation, your work in DC, your everyday life. But somehow, this video, despite all of this, seemed to immensely touch your family. In my Korean culture, a friend’s family becomes my family. So in that tradition, I’ll consider your family like my own. In fact, your sister is helping me go to Springfield because my sister cannot.
Your mom wanted to collect what everyone said at your memorial into a book. Here’s what I wrote for your memorial:
I remember the good times I had with Amber in our undergrad dorm, Beckwith Hall, when I would go watch movies with her late at night after she was in bed, our liberal talks, and scheming to go to Korea together. We were one of the few students at our dorm and at the campus at large who adamantly opposed Chief Illiniwek, as a racist Native American mascot.
Although Amber was a grade younger than I was, she was a cool person I wanted to hang out with more. I remember when we were both in undergrad, she invited me to see a young state senator she had a crush on. I wanted to go, but I didn’t because I had too much homework. I’ve always regretted not going to see the politician, who would later become our first African American President. Amber was always ahead of her time.
During my senior year, when students took to the streets after the basketball team lost to University of Michigan, Amber and I joined them. We rolled towards Wright Street, as hundreds of Illinois students were walking in the street, angrily chanting obscenities at Michigan. We saw the mob congregated at the alma matter, which some students were climbing. And headed back to our dorm, where my night personal assistant was annoyed that we were late, but it was so crowded we couldn’t have gotten back any faster.
Before graduating, Amber joked that she would follow me to grad school in California, where I was going to law school, and steal all of my personal assistants. We both had difficulties upon graduating undergrad. Amber returned home from starting grad school at UIC with challenges finding personal assistants while I had problems with accessible housing and personal care. Amber and I commiserated with each other over AOL instant messenger during this time.
I last hung out with her last year when I visited campus. She was always great about being interviewed for my various video projects, so I interviewed her for the second time in her Daniels dorm room. Before the interview, she expressed some annoyance at me that the video from the first time I interviewed her was still being shown in disability studies classes. Apparently, someone recognized her as the angry radical in the documentary we made in undergrad. I don’t agree with the angry part, but she was a great progressive advocate for social justice across the board.
She led such an amazing and bold life. I was in awe of everything she accomplished, her values, and international travels. I appreciated that she believed in disability rights and independence so much that she wanted to help with Able Community, a housing cooperative for people of all abilities that we are starting. Amber was on our advisory board. I’ve just been appointed to the Illinois Statewide Independent Living Council, and told Amber I was going to nominate her to the Council since she was so perfect for it. She was extremely excited about it. Amber is someone I immensely respected. I will and do really miss her. I will remember her whenever I visit the university and continue our disability work.
I still miss you, Amber.