Editor’s Note: Portraits of Resilience is a photography and narrative series by Prof. Daniel Jackson. Each installment consists of a portrait and a story, told in the subject’s own words, of how they found resilience and meaning in their life.
I had started the second semester of my sophomore year, and it was going fine. I had all of the test dates in my calendar. Then on February 22, 2014, I was running with a friend and I had a cardiac arrest. Bystanders called 911.
It took them six minutes to get there. Nobody did CPR on the scene, which would have made a huge difference. It took eighteen minutes of CPR for my heart to start beating on its own. I’ve heard the brain can actually survive four minutes without oxygen, so any kind of CPR would have really been useful. That’s why I’m a big advocate of CPR.
I was ambulanced to MGH. My Glasgow Coma Scale was three, which is the lowest possible. It’s based on basic signs of consciousness, like whether or not your pupils dilate when they shine light in your eyes. Because of that, I was eligible for this experimental procedure where they cool your body down. They took an MRI that day and it was normal, because the damage had not hit yet. Then they took it after the cooling procedure, and there was extensive damage in the basal ganglia and the occipital lobe. The damage to the occipital lobe makes it difficult for me to read, even today.
I was at MGH for five weeks. I don’t remember that period at all. Apparently I was what they call “storming,” which means my eyes were open, and I was flailing my arms and legs around. My prognosis was Persistent Vegetative State. Doctors like to give you medication to try to stop the storming, but my dad disagrees with all of that. He found the best way to calm me down was to give me massages and play music to me.
They transferred me to Craig Hospital in Colorado. Craig was really an amazing place. That was when I became aware. The sense of loss had not hit me yet. I was kind of just, like, “Okay, this is what I have to deal with.”
Craig is a rehab hospital. There are three major disciplines — speech, physical, and occupational — and I experienced them in that order. At first, I would stick out my tongue for “yes” and close my eyes for “no.” I wasn’t able to move my arms at all or my legs at all. I remember my face used to itch so much. I would close my eyes and say, “You know, if you tell yourself it doesn’t itch, it will stop itching.” Vision fell under occupational therapy. I described it as rain falling on your car window — things were blurry and moving.
When I first started eating, I didn’t like it. I thought, “Just keep going with the G-tube. I’m fine with that,” because it was a lot of work to chew. My big goal after I got to talk and eat was to walk. I incorrectly believed that if I could only walk, everything would be better. I remember when I first stood on my legs for the first time, my hamstrings hurt so bad. My goal was to walk out of Craig, but when I left, I needed a walker and my physical therapist to help me.
I went back to L.A. where I’m from. At first I went to Rancho Los Amigos, which is really well-known in the business. The problem is that the wait lines are forever — it’s like going to the post office. One of the reasons I got in so quickly was that one of the higher-ups was an MIT alum. I think she pulled some strings. I went to Rancho twice a week for two and a half months.
By September, I could walk and I could go to the bathroom by myself, which was a big deal. I wanted to move along faster, so I made the decision to stop going to Rancho and start going to this other place called CNS, the Center for Neuro Skills. CNS was for-profit, so that’s kind of iffy. Less quality but more quantity. I went there for five days a week, six hours a day.
Then I started at Santa Monica College. They have a brain injury program, and they’re very good with the accommodations. I took two classes. One of the classes was training me on technology. I have a program on my computer that reads to me. The other one was kind of a joke class. It was very easy, but in the beginning it was good just to have to go there on my own, sit in class, and do these things independently.
I came back to MIT last fall. Living on my own was a big adjustment. I do need help still, but my roommate helps out a lot. In the bathroom, I have squeeze bottles for shampoo and soap, and she refills them for me.
Last semester, I started with two courses and I had to drop one. Two was a heavy load, but one was a little bit too light. I’m also going to occupational and physical therapy. I don’t go to speech therapy anymore. I still have dysarthria, but it will get better with practice. I do that everyday, all the time.
My vision used to be a really big, sensitive issue for me. I knew my motor skills were going to improve, but the vision, I didn’t know. Now it’s improved so much, so it’s not a worry.
I’ve put all my aspirations on hold. I prioritize a lot, so I had to walk, and then I had to feed myself, and then dress myself. I cry a lot when I get frustrated. Usually it’s something a ten-year-old or even a five-year-old could do. If I go to a dinner, I’m thinking “Is it going to be an issue?” I cannot really cut meat yet. So I get upset but I think it’s justifiable, and I don’t stay upset.
It’s hard to make new friends. Partly, it’s that I feel I cannot make any kind of relationship with a person if they don’t know this about me. It’s a big part of my life, especially right now. Maybe in ten years it will be a side note.
I’ve not really looked ahead too far because I’m so focused on getting through each day. I want to finish the semester with two classes and hopefully get an acceptable grade in both. I think that will be a really big accomplishment.
Life gets better if you work at it. If you don’t, if you sit on the couch all day, it doesn’t get better. But if you work hard, you can make anything happen.
Taylor Shaw is member of the Class of 2016.
This project is supported by the Undergraduate Association’s Committee on Student Support and Wellness, chaired by Tamar Weseley ’17 and Alice Zielinski ’16. To participate in the project, or to learn more, contact ResilienceProject@mit.edu.
There are many ways to find help. Members of the MIT community can access support resources at together.mit.edu. To access support through MIT Medical’s Mental Health & Counseling Service, please call (617) 253-2916 or visit medical.mit.edu.
Image and text copyright Daniel Jackson, 2016.