About Me

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I have lived with chronic illness for six and a half years now. To write that is halting. And it’s less a feeling of “Wow, look how much I have endured” and more like, “Shit, I’ve lost that many years?”

 

Why do I say “lost”? It’s not like I was doing nothing for all that time. In fact, I completed my Bachelor’s of the Arts in Mathematics at the University of Chicago, co-authored a systematic review, published an academic paper through my school’s REU apprentice program, became a core leader at my school’s chapter of Chicago Student Action, and founded and co-led a campus campaign called Students for Disability Justice that pushed for better student disability services and campus accessibility.

 

Yet during all of this there was a sense of barely hanging on. I would complete my school and activist duties and lack the energy or mental capacity to do much else. I often physically struggled to complete basic self-care or household tasks, or would do them and be worse off for it in terms of pain and fatigue. By 2014, cooking was so hard for me due to orthostatic intolerance and my physical difficulty with grocery shopping, I often didn’t get enough to eat. And yet I could not function at all without enough food, and would pay for these constant lapses by having to walk out of classes or meetings, weak and confused, and desperately choke down some chips or candy from a vending machine.

 

I wanted badly to challenge myself academically and find new interests, but there was a strong feeling of only being able to do a fraction. Even though I technically passed some serious computer science courses like Networks and Computing Systems, it was by the skin of my teeth. I had skipped entire long-term projects. Wanting to delve into learning but not being able to was tough. In order to avoid getting kicked out, I realized I had to take the easiest credits that would allow me to graduate and not rock the boat.

 

I wanted to go to parties or social gatherings on weekends, but when I would try I frequently found that my brain fog and hypotension made it hard to carry on a conversation, particularly if I had to stand up. I would nod a lot while retaining very little of what was said. All the while I felt an invisible countdown over my head (like in that Nickelback video) to when I would go past my threshold and have to go home in order to start recovering. This would be the point where the dizziness, lightheadedness, and chest pain had finally surpassed my ability to compensate by shifting my posture or downing glasses of water, and my staying would only prolong recovery and not allow me participate meaningfully in the event. Sometimes it happened pretty early on.

 

I found myself quietly undermining my activism by avoiding commitments. On some level, I believed that if I talked to more people or initiated more projects I would be growing my base beyond a level I could physically keep up with; and I think I was right. I was failing or withdrawing from classes. This all should have been a red flag to stop or slow down, but I deluded myself for quite some time, thinking if I just tried a little harder things would come together. I officially left my organizing positions in early 2017.

 

What I’m trying to paint here is a sense that I was doing everything halfway or less. The last 6 years were about survival. It’s incredibly disheartening (and yet also liberating) to say this, but in college I didn’t feel I had the full opportunity to learn about who I was, what I wanted to do or liked, or who my “people” were. I want to be clear that it might not have all been because of my illnesses – I’m still working all of this out – but it’s hard to deny the disadvantage. So I thought of my college years as “lost” – in fact, when I was living them, I often referred to them in my head as “the dead years.” But maybe the real loss I feel is loss of meaning. Having to constantly care for and monitor your body is extremely mundane, isolating work. What if I can now make all that work mean something? What if I can transform it creatively?

 

Now I find myself wishing that I had blogged my experiences in real time from the beginning, since I forget easily. I’ve retained some of the emotions from past struggles, but most of the details are gone. My symptom picture changes so much that what I’m going through now probably looks very different from what I went through a year ago, or 3 years ago, or 6. It is so chaotic that I tend to even forget what symptoms I experienced in the past week, sometimes even asking my parents to remind me what symptoms I’ve been having! How does one form a meaningful narrative out of something they may not even be reporting accurately? Yet I feel I have to try. I also hope to share how my experiences, both as a patient and a research associate, have shaped my views on industrial medicine and the capacity (or lack thereof?) for patients, providers, researchers, and alternative practitioners to work as a team rather than as adversaries. Hopefully some of it can be of interest to you.

 

Welcome.