I apologize that I have not updated you in a month. I was hoping to have something more concrete to say, something certain for better or worse. I’ve been drafting this email since then, adding and subtracting things that you might want to know. In short, I am currently well, though I say that cautiously. I’ve divided this email into a few sections, because it will be quite lengthy. This way you can skip the medical particulars if you wish.

Aplastic Anemia, LGL-Leukemia, Cyclic Neutropenia, Primary Immunodeficiency

The nature of my illness/condition is difficult to explain as it is rather different in presentation to most severe diseases. Allow me to briefly explain, as this is the question most ask. When I was in the hospital for nearly three weeks, I had extremely low blood cell counts, which is a condition called anemia. The cells in our blood do various things. Our red blood cells utilize a protein called hemoglobin to carry oxygen throughout the body. Since my time in Oman in February I have been exhausted all the time due to low red blood cell counts and low hemoglobin. I have still not recovered to normal levels in either. Our white blood cells defend our bodies against diseases. Of those, the vast majority are neutrophils and lymphocytes. Neutrophils swallow invading pathogens. Lymphocytes regulate the immune system by killing errant cells (such as tumors/cancers) and generating antibodies. In my case, I had seven days without any neutrophils at all, and low numbers across the board. Because of this, the doctors ordered a bone marrow biopsy, and I was diagnosed with severe aplastic anemia.

Having reduced red blood cells means that I have less energy. Having fewer platelets means that any bleeding won’t be stopped (internally or externally). Having no white blood cells means that any disease or even allergy can kill you – something as simple and normally inconsequential as a mold infection, a mild cold, or even the naturally occurring bacteria in your gastrointestinal system can be fatal. At the time that I had no neutrophils and low counts, I had an active infection from a fistula and a rash which looked to be viral in origin. I received the most powerful intravenous antibiotics available for 12 hours every day to try and control that situation, as well as antifungals and antiviral oral and injection medicines. Left unchecked by these antibiotics, it is likely that I would not be writing you this email. 

This is where my case diverges. Aplastic anemia is a very rare disease affecting approximately two in every million people. I am now part of a support group for people with that disease. Everyone in this support group, as well as the vast majority of people with aplastic anemia generally, did not recover without the aid of powerful drugs, and their recovery periods span months and even years, slowly recovering the marrow’s ability to create blood cells. Generally speaking, rogue lymphocytes clone themselves in great numbers and those lymphocytes kill all the other blood cells. The treatment is meant to remove those lymphocytes and retrain the marrow make ones that function correctly. This is a long process and involves techniques that were developed only very recently. As recently as twenty-odd years ago, this disease was 100% fatal. My marrow, on the other hand, suddenly switches back on, and my recovery has been much, much quicker. I saw switches and not switched because this is not the first episode of crisis for me. I had no neutrophils in Russia in June 2018, in Kyrgyzstan (right after Botswana) in September 2021, in Mexico in November 2021, and in Oman in February 2023. I recovered after each of these episodes – the first three times seeming to be independent events until the doctors in Oman were able to see the pattern and link it all together as a larger, systemic immune problem. 

Worried family members: Adrian, Brent, Mom, QQ

Many of you have been concerned that I am in pain. Since leaving the hospital I have not been in much pain at all. The main adverse effects come from the medicine prescribed to me, cyclosporine, which causes many primarily neurological effects. The greater burden is a mental one. I do not know when or even if my marrow will turn off again. I do not know how long that will last. I do not know how I would survive another episode. And most worryingly, there is no established precedent for my particular clinical presentation, meaning that there are no doctors who know any of this either. At this point it is prudent to expect a return of acute symptoms as the cyclical nature is quite evident from the multiple episodes. It is also dubious that cyclosporine is the correct medicine for my case. The header of this section lists other possible diseases which have non-perfect correlations with my history. We simply hope that cyclosporine does something to keep the bad lymphocytes in check and that the National Institute of Health can provide some answers.

Medical Regimen & Data

Along with the cyclosporine that I am taking every day, I am getting my blood drawn three times a week at the hospital. I’ve collected all the data from every complete blood cell count in a color-coded spreadsheet here. There are charts on the far right tab, as well as a more-or-less complete list of all my illnesses (created in an effort to nail down the cyclical nature of my problem) to the left of the charts. I’ve actually built a website to help anyone with the disease track their own numbers and keep abreast of others’. This site has more simplified numbers and easier to read charts.

I will be going to the National Institute of Health under Hematology for an outpatient consult on August 8 (a very auspicious date in Chinese). This consists of a bunch of blood draws, a clinical visit, and a bone marrow biopsy all in the same morning. I’ve also been accepted into an inpatient study with the National Institute of Health under Immunology, although the details and timeline for that have been frustratingly sparse.

Daily Life

I count it such a blessing that I can plan things now, if only for the next few days or weeks. All of this time I have is simply a bonus. It’s fascinating how quickly life reverts to the mundane, and how quickly I am nudged to take things for granted. Last week I started seeing more friends and family again. If nothing else, my illness and that of my wife brought our families closely together, and that is such a gift. The opportunity to connect with all of you, too, has been overwhelmingly positive. I have not had the energy to respond to each of you individually, and for that I apologize, though I know you are all quite understanding.

QQ, 非白, Jimmy, and Brent playing Sifu

Some things have changed. A few pillars of my life are now largely inaccessible. I cannot travel in good conscience. I hoped to travel to 100 places on the century club list, but it looks like I’ll have to be content with 99. I cannot climb, as I lack the energy. Playing music is similarly difficult to fathom, especially in a venue setting. I cannot be a teacher until things are sorted out. Most frustratingly for me, right now, I can’t draw in the way that I’ve taken for granted these past many years. One side effect of the cyclosporine is that my hands are extremely shaky. This has also made it difficult to cook – the other day I burnt a lot of maduros because of how arduous it was to flip each one with chopsticks.

Not that I’ve stopped drawing entirely. I’m trying to sort out how to work with the shake (mostly I’m just drawing in the hour before and after taking my dosage, when the effects are the least prominent). I’m also turning my artistic intentions to archival and presentation purposes. My mind is slower than it has been due to the medicine and the lower red blood cells. Also, I cannot be in sunlight anymore, as my skin is now extremely susceptible to sunlight and skin cancer. I got sunburnt on my arm from the Florida sun hitting it through the window on a fifteen minute drive home from the hospital.

Projects

I am rarely idle. I am spending my time on a number of small projects. I’ve updated my personal website with images from Oman, and most significantly by preserving the curriculum I was a part of at all the places that I’ve taught so that my students can retain access despite losing their learning management accounts. I intend to keep working on this website by shoring up the tagging for the 14,330 images and fixing broken image links. I also want to add my music more directly into the website. I’m collecting my drawings together to make more books – books for my own teachers and friends relevant to their areas of interest (such as a book of drawings of Islamic Architecture for my professor at Yale). I am hoping to find a way to release these drawings to a wider audience. I once thought that to do so was self-aggrandizing. Now I am beginning to see sharing my artistic endeavours as another way to positively inspire others now that I cannot teach directly. I will hopefully be releasing my albums in a physical form as well, replete with liner notes (my goal was originally to create stop motion animations with my stuffed animals to accompany each song, and then to possibly write children’s books for them). I am also slowly responding to your wonderful emails and messages.

I have been assisting others with Aplastic anemia by building the website and spreadsheet resource (above), and I hope to have the time and energy to chronicle my medical experiences more broadly for the benefit of all on a blog that my wife has cleverly named A Canary Abroad. I’m copying this email (or a version of it) there as well.

Aplastic Anemia Support group – Tessa & Robert, Wayne, Stefania, Sessy, Dani, Jitesh, and Ciara

To pass the time in the many times when I have less energy, I have been reading a lot of graphic novels and historical fiction. This has inspired me to offer my library of drawings to accompany authors. In reading The Turtle of Oman and The Thing I’m Most Afraid Of, I thought both books would have been greatly enriched with illustrations inset between chapters. I will be contacting authors to see if my over 10,000 drawings could be of interest to them. Say the author of The Thing I’m Most Afraid Of writes about Malaysia next. Perhaps I could collaborate.

I have been watching the lecture series of my favorite history professor on The Making of Modern Ukraine. I’ve also just resumed language practice, with lessons to maintain my Russian, Thai, and Greek. I practice Mandarin and Cantonese regularly with my wife’s family and my family respectively, and I intend to add practice for Spanish and Turkish. I have also been playing copious amounts of The Legend of Zelda: Tears of the Kingdom after completing Metroid Dread.

Requests

Many of you ask me what you can do for me. Update me. Inspire me. Share your artwork, your lifework, your projects, your museum visits, your applications of learnings from my classes and others with me. Send me your albums, your books, your graphic novels, your papers. Tell me about the classes you are taking in uni, about your dreams for life after uni. At Yale I was mostly an installation sculptor and performance artist. When I graduated, I decided that teaching would be my life’s performance art, and curriculum would be my installations. All of you are, in my own estimation, works of art that I have been honored to aid. You are ultimately my life’s greatest artwork (thought obviously not mine alone) and I am proud of that work.

Finally, I would love for my drawings, photos, and music to reach more people. Any help in publishing my forthcoming books of drawings and albums would be lovely. Share them from my new Instagram and Spotify. Point people to my website. If you know publishers of any sort, send them my work. If you know any authors, particularly those for YA fiction who are writing about any of these places on this map, please connect them with me.

These are the two books and two albums I created recently:

• TGS Drawings 2021-2022
• TGS Drawings 2022-2023
• Angibles – Album of original children’s music (except the bonus track, a cover)
• Appropriate – Album of songs in various languages

That’s all for now.

Terrence

P.S. Here’s a profile that my local PBS station did on me: