The Inertia of Grieving during my PhD

On November 19 of 2021 my maternal grandmother, which was practically my second mother, a big friend, soulmate and my biggest cheerleader passed away after twenty-one years of graciously swerving an aggressive cancer. All doctors involved in her treatments spoke on how much of a miracle her treatment journey was, and the high quality of life she experienced.

Despite her “medical success” being out of the norm, none of the medical practitioners focused on that upon her death, the thing I heard the most was about how positive my grandma has been for all this time. She was always kind to the nurses, never refused treatments, and even during painful procedures she would exclaim “I want to live! I will do whatever it takes for me to live!“.

Earlier this year mum reluctantly told me about this new cancer that showed up. “We are watching it and doing treatments” – She’d say in a reassuring voice. But we both knew something was not right. The Covid situation was horrible back in Brazil, and I feared not only for my health but for my parents and my grandma’s.

In a text message, her oncologist told me “If I were you, I’d come tomorrow”. I stuffed all my fears down my gut and bought a ticket to go see her, help my mom, my grandpa, my family. The day before my flight an uncle I loved very much died of Covid in the ICU and a panic attack washed over me. I simply couldn’t go, all that fear I had swallowed, consumed me, and all I could think of was “what if I kill her?“. So I stared at all my suitcases, cried my eyes out, and ashamed of it all, asked my husband to tell people I had backed out of my trip.

The next month was pure agony. The days merged together and the nights dragged along – A slow-motion disaster scene where I sat right in the middle trying to shield my grandma but being way too far to protect or distract her from this unavoidable disgrace. Finally, she got her booster shot, and I got an immense boost of confidence, bought the plane tickets and flew to Brazil four days after.

I quarantined for her safety, and I told myself, “I am here now. I just need to wait, so I should do as much work as possible so I can focus on her once the negative tests come through at the end of my quarantine”. In that hotel room, I sat typing empty words, and the only boxes I ticked on my planner were the days that passed. I was a prisoner of my own mind and anticipated grief.

The feeling I experienced on the Friday I drove to her home to see her again, was like opening a gift next to the Christmas tree. The butterflies soared from my stomach and freed from the anticipation they danced around my face putting the biggest smile on both our faces. When I looked at her there was nothing I wanted to do more than just fluff her pillows, get her favourite foods, warm her feet, listen to her voice, drive her to doctor appointments, advocate for her, do my best to help her heal.

And from that day onwards I had a sense of deep purpose and managed to do bits of work whilst she managed to rest after a difficult morning of pain and no appetite. Her radiotherapy specialist gave me positive news, it seemed like we could potentially get her back home and give her more quality of life, and so I planned to fly back to Canada, to focus on doing work, see my husband and fly back for Christmas.

On the day we said goodbye, she could not kiss me because of the breathing machine she had to use several times a day to help her breathe better. That was the only day we both silently cried and held one another, I made her promise me no funny business while I was gone. And we swore to meet again for Christmas. She knew I would keep my word, but the tears that streamed down her face told me she thought she could not keep hers. She said “you give me so much life, I love you”, I blew many kisses back through the air as I closed the hospital door behind me. My dad held my hand firmly like he never did before and I let out the most painful cry, but I tried to keep it together for my little sister watching me break like this.

Isabel LeΓ£o – minha rainha

I didn’t learn anything from the previous months, flying back would not enable me to do any work. Being in Brazil was hard work, but it gave me short windows of inspiration and motivation. Her presence washed me with a tsunami of optimism, happiness and hope, and I truly believed I’d come back on Christmas without the weight of my deadlines allowing me to focus on her. Unfortunately, as my plane rapidly moved through the ground, I gasped for air and my eyes overflowed before the plane was in the air. That’s when I knew I had made a big mistake.

Four is a number disliked in Chinese culture because it sounds like ‘death’. And exactly four days after I left her in Brazil, on the 19th of November she left this earth as I whispered to her through facetime that I loved her, and that I did not want to see her suffer, thanked her for the immeasurable love and the amazing life we had together, she took her last breath while my sister and little cousin held her hands.

Since that Friday I live in the inertia of my grief. My mind and heart usually roads with permanent flowing traffic, now troubling me with their emptiness. My body feels like an empty shell occupied by my mangled soul that crawled and manage to squeeze itself entirely in the pit of my stomach.

Although I have failed miserably until now, I will keep trying my hardest to embody her happiness, her willingness to live and all the magic things that make her so alive inside of me. Love songs, emotional movies and romantic books are filled with persons with so much love for each other that they are willing to die for one another. The days that followed that Friday taught me that to be willing to die is not how I will honour her story and everything I learned from her in these miraculous thirty-something years. To be willing to live is more important, and so I have put all my energy into staying alive, while I ride the inertia of my grief. Irritated at the lack of ability to produce work, but alive to tell her life story another day.

The PhD Pandemic

I proudly installed my blog system in the beginning of my PhD journey, this was May of 2020.

I intended to keep a record of my days, nights, work, thoughts and everything I am going through. The PhD has been a lifelong dream and I wanted to be able to remember every single memory of it. But then the Pandemic hit for much longer than anyone anticipated.

One of the books I have been carrying around with me. Andy Field is my favourite, but I didn’t take a picture of it, meh. πŸ˜’

Projects I wasn’t fully invested in came through on the Lab and I simply had to get through them, I signed up to classes and realised some of them were out of my reach, others ended up being a disappointment. And the ones I loved, I either had to give it up due to external factors, or wasn’t able to fully enjoy them because of the state of complete and total mess I am. Overwhelmed is an understatement.

The pandemic dragged so many parts of my life to a deep, hollow dark space that I had a hard time finding words to express my feelings or even my experience in the past year. From an invasive surgery, to deaths upon deaths, illnesses to absolute loneliness that Nick and I are going through in Toronto, all these factors took the words away from me. I simply lost the ability to absorb information and communicate the most basic things going through me. Until now words fail me, but I feel like I should at least try to come here and write about what I am going through.

I have my own dream project, the foundations of it have been pretty set for many years and although everyone thinks it’s a great idea, I do not have the funding for it yet. And there are a few things I focused on for the past months: Applying for scholarships, funding, getting grades above 85% and trying to get material for a paper to be published.

So the past year I have been working really hard on my grades, which is no easy feat in the Computer Science department, my bachelor and masters degree are not CS heavy at all, so I have a ton to catch up on. The brilliant side of it is, I am enjoying it a lot! πŸ˜€
During school I wasn’t a fan of maths and always excelled in writing, words or anything that worked with storytelling. But now numbers comfort me, in a strange way if I study hard enough I will be able to explain its nuances easier. So statistics has been something I have been reading and working on my own with so much grit and happiness! That doesn’t mean I am great at it, I still have long way to go, but am working on it.

I have also put a grant together for a partnership with a company that has a joint lab opportunity with University of Waterloo’s CS Department, this process was so enlightening and I learned so much from my supervisors. I had a very special time with Dan, where he coached me and did a lot of the work closely with me. Was an amazing learning opportunity. He’s such an amazing mentor!

So the past 10 months have been a lot, and I did my best to keep moving forward. Slowly but surely, the best of me given my emotional state, my health issues and the plague that affected the world.

I am now crossing all my fingers and toes and hoping to get the funding, so I can fulfil my dream of doing for many kids what my mom did for me, all on her own. Let’s hope this is possible, I know I am not the most qualified person, smartest or best person to throw funding at, but I know for sure, that if I get this funding I will do the best work possible to help kids with oculomotor diseases. Fingers crossed they think I am worth the shot!

My first fall term

It’s October and even though I have been trying to write down my experience since my second week of the term, I simply couldn’t.

I have spent my spring term learning the research assistant work, teacher assistant work and system, working on a MITACs project that ultimately pays for my funding and trying to find the direction of my PhD project. So the new addition of the fall term were my classes.

The Maths faculty in the University of Waterloo recommended me to take one class maximum per term, however I though that maybe I could handle two classes, and signed up for an approved class of Advanced Experimental Design in Statistics and a Seminar Class with the topic of Surveillance and Privacy. Well, that was a mistake!

Although I was getting really high marks (90% +) on the statistics quizzes I was playing hard catch up by studying 25 to 30 hours per week to achieve that. And my seminar class papers were pilling up, so I was writing my reviews the day before my class and crying daily because I knew I couldn’t do it.

The classes, RA, TA and my PhD project were breaking me. I worried constantly because I could learn enough to get grades on my quizzes but ultimately I didn’t understand the subject fully, and that got to me as I felt like it wasn’t good enough to keep it going the way I was doing it. The horrible part was that I spoke to my stats professor and he is just great, I loved his teaching methodology and I didn’t want to drop the class. But I need my grades to be above 85% so Waterloo will consider me for scholarships and fellowships. So I feared my future with the subject. Although I am still in touch with the professor, I formally dropped the class and I miss it every time I have to read a new surveillance paper and write a review. It felt so much more rewarding to figure out the math problems I was given, than to feel like I am endlessly reading security papers with so much sociology behind it that I my brain is melting.

Don’t get me wrong I find the class intriguing and very interesting, I just have a much easier time reading the Computer Science papers compared to the Sociology ones. I just do not feel like my brain is good enough to process the long papers with so many terms that I don’t understand, and when I Google them I end up with more questions than answers. ooof, it is hard.

The positive side is that my surveillance class has a kind and very knowledgeable professor that I lookup to very much. I look forward to listening to her points and reading her messages, as she teaches me so much in the limited time I have with her.

I guess I hit the professor lottery this term, I wish I had hit the funding one too, so I could have dropped my RA and kept up with both classes. But if there’s something I have learned to accept in the past year is that if I achieve half of what I am aiming for, it should be enough, I do not possess the same steam I did a couple years ago and I got to slow down.

For my own sake, I need to aim for longevity and learn my limits within the boundaries of my newly discovered disabilities. And it fucking sucks!

Purpose


In May of this year a big break and blessing happened to me. I received the feedback that I had gotten the opportunity to start my PhD, something I had planned to do later in life, not now, but life has thrown a few curve balls at me and I decided to choose purpose over money.

It has been challenging to leave a life of comfort behind, and dive into purpose given a bunch of personal circumstances I have faced in the past two years. Buying nice things, going for pain management treatment and hours of therapy were my way of coping with a bad life whilst holding “glamorous jobs”. So I have decided to put my purpose and passion ahead, and see if that heals my pains and problems instead of numbing it momentarily.

I have a lot to learn and to catch up to in order to get myself to the best speed possible taking into account my limitations.

I intend to write about my PhD story here, so I will pour my feelings, tell about my experiences and throw some pieces of science in the same space. My objective is to be able to look back onto my PhD journey by having it documented here. I am an old school internet child and blogs have been my safe space and diaries since I was 11, nothing more fitting than going back to it at 32.