Terminal Degree...Terminal Illness?

My mantra, or personal tagline since my first semester of my doc program has been “I’m killing this PhD,” and almost simultaneously feeling like “this PhD is killing me.”

You really can’t fully explain or imagine what it means to get a PhD. If you do it correctly, it changes you. It stretches you and tests you in the most trying ways. Adding to the complexity of the doctoral journey, life outside of academia continues to impact how we experience the doctoral journey. This is particularly true for women. I have known a few women that had one or two babies during their program. Others who decided to take another route, some who got married, and another who battled and beat breast cancer all while writing her dissertation.

What I didn’t know was that during my journey to this terminal degree, I, albeit indirectly, would also be confronted by a terminal illness. 

On May 8, 2020, my little brother’s 29th birthday, we urged him to go to the emergency room after experiencing some digestive issues, and a couple of headaches. I’ll spare you the details, and how painstakingly slow the next six days went by. On May 14th he was diagnosed with cancer and my life changed forever. Not just cancer, but Stage IV Colorectal Cancer with Mets. While colon cancer is pretty common in the United States, Stage IV with Mets in a 29 year old otherwise healthy person is very rare. My brother was diagnosed with the same affliction that took the lives of Chadwick Boseman and Natalie Desselle this past year. That week was the worst week of my entire life, and I wasn’t even the patient.  I just felt like a piece of heart had broken, and couldn’t be fixed. How could he, the youngest, and by far the healthiest out of all of us, be facing such a serious condition, and during the global punishment where none of us were able to accompany him in the lonely hours of a hospital stay. Fortunately, my parents somehow managed to persuade the hospital to allow them to wait in the waiting room for "our" baby. For that week I couldn’t do anything but worry. Cry. Repeat. Google everything. Sleep. Repeat. That was the first week, (many more to come) that this fucking PhD didn’t matter. It’s in these moments that you take care of yourself and your family first, and get a rude reminder of life priorities, and that cancer doesn’t play fair.  

May 24th I flew home. My mom and dad flew me first class (it was during a pandemic so it was mad cheap) to get home. I wore the finest hazmat suit and couldn’t partake in the pre-Corona champagne fanciness that one thinks of in first class.  

I arrived in my hometown, was tested for COVID19 on Monday and went to visit my little brother on Saturday. His head was shaved, a decade of locks and his young adult look was gone, and so was some of his happy relationship weight. But my brother was there, and I was so grateful to see him. It was so hard to see him in his current state of being. He moved super slowly, sometimes with a cane, and moved from laying in the bed to laying on the couch. It tore me up inside, but I knew I had to show up as Big Sister Reka for him, and as “the happy child” for my parents. So on top of taking a 4-unit accelerated pace summer course, teaching a new prep Master’s level course, working my summer Graduate Assistant hours, on top of working on two research projects with my professor-friends, I also visited my brother twice a week, filled in when his girlfriend - now fiancée - needed to run out, organized his hospital bills and other logistical tasks, made dinner a few nights a week for my parents, all while trying to completely take in the gut-punch that summer 2020 had offered me. Oh, and trying to be present to a growing relationship with my partner who was now 3000 miles away. And the civil unrest that resulted after George Floyd’s and Breonna Taylor’s death (ARREST THE COPS THAT KILLED BREONNA TAYLOR), and the dismal numbers of coronavirus cases in the United States. Let’s just say it was intense. And I also started a small business called The Scholarly Sewist too. 

Where is this peace that God promises? 

October 4th I flew back home. A month before my mom and I’s previous agreement for me to return in November. So I packed up and went home for the holidays. There were some great moments and some hard ones. Due to my brother’s inability to work, he lost his government contract job, and by Thanksgiving he and his fiance moved into my parents home. While it was great being able to see my brother daily, not having to worry about him from afar, it also meant I now had a front? row seat to his good days and bad days, and everything in between. On Thanksgiving I witnessed him not being able to enjoy his favorite foods, and even on Christmas day having to take a break in the fun to nap. On another day, I had to pick my brother up off the floor after he had fallen while he was simply just trying to reach for something. But we also had great conversations about future business and travel, whether or not aliens are real, and whether segregation was actually better for Black people, and him schooling me on Tulsa and other facets of Black excellence. Even as his body was again rapidly, and failing him on many occasions, his mind was still there. It was the intellectual connection that we have always shared that bonded us the most. 

On Monday January 25th I got a call saying my brother was going to the ER. Three hours later I received a call saying he is going to have emergency surgery. SURGERY? EMERGENCY? All while I am 3000 miles away. The past week had been the worst week of my entire life, and I wasn’t even the patient. I found this feeling settling in again, and I just don’t know if I have the bandwidth to keep having the WORST WEEK EVER. And then the sentiments of melodramatic, selfishness, guilt, emptiness, loneliness, extreme sadness, apathy, anger, confusion, etc. sunk in. I felt like I experienced every possible emotion a human body could handle except for happiness.

So who do you talk to about this? I can’t talk to my mom. I mean sure, I can call her, and cry, and put my load on her, but that seems selfish, as she has to serve as the primary caregiver for my brother. So I pour myself into my work, which thank goodness is somewhat flexible as a doc student. I can’t talk to my boyfriend. Yes, he is great, but when I don’t even know how to show up for myself, I don't know how to show up as a girlfriend. I feel like my resilience and productivity make people think that I am okay. I am not okay. I am falling apart. Unraveling and no one sees it. Two days ago I attended a meeting as a thought partner on a seal of biliteracy initiative at the higher ed level, first of its kind. Yesterday I presented at a Dual Language Conference with my coauthors. Today I cried ALL day long and only left my bed to go to the bathroom and get water. I am not okay. 

February 19th began as a normal day. I woke up early, taught my literacy methods course, and then met a friend for a beach walk. I arrived home and received this text from my mom.

“Call me later, around 8pm my time, not before I am busy.” So of course, I called her immediately and after inquiring on why I am so hard-headed, she asked if I had spoken to my brother lately. I speak to him daily, mostly through texts so the flooding overwhelm and fear begin to set in. All while my superhero mother is just cool, calm and collected. I’m like “just tell me.  TELL ME NOW.” So she explains to me that the conversation of hospice has come up (again) and Greg is in agreement. I broke down immediately, for 2 mins and then gathered myself. I was not sure if I was in agreement, until later that evening while FaceTiming my brother I was able to get a glimpse of his intermittent pain. I, big sister, waited helplessly as my FaceTime view of my brother’s face quickly switched to the ceiling as he screamed for help. I could only offer words, “I am here, Greg I am still here.” Press your call button. It felt like forever until the nurse finally came to offer him some relief. In that moment I knew I was 100% behind any decision my brother made to relieve himself from months of pain. Although I was behind him and his decision, I knew I was unprepared and distraught as I faced what we all knew was coming.  

I was mad, angry, furious, and indignant at God. Why Lord? Why my brother? The only person on the face of the Earth that doesn’t annoy me? Why my only brother? The only person who truly understands and accepts me, and is so easy to talk to because we are so similar?

Still looking, where is this peace that God promises?  

So on February 21, I flew back home. My partner came over the night before, washed a load of laundry, and helped me pack and prepare for my flight. It was a restless night as we stayed up late and I had to be at the airport at 5 am. As he pulled up to the departure curb and put the car in park, I lost my shit. My entire body began convulsing, and I started a screaming/crying remix. It was awful. Three minutes later I gathered myself and took the long flight-with-a-layover home. The only time I felt good was when I was asleep. Each wake-up on the plane reminded me where I was going.  I was going to watch my brother die. My favorite person in the world. He and his fiancée were supposed to move to San Diego next year. We were supposed to start investing in stocks and real estate together. I was supposed to plan their wedding at Joshua Tree, and we were supposed to visit Greece as I tagged along on the second leg of their honeymoon, and we were planning on traveling to Australia together for my PhD graduation trip. How can I be peaceful when my life plans are forever changed? And then I walked into his room, after an almost irate encounter with the front desk security. He was frail and almost hard to find in the big hospital bed. He had tubes and IVs attached in multiple places. But there he was, my brother, and I was so happy to be by his side. My mom said he hadn’t said more than a few words that day or the day before as they try to figure out the cocktail of drugs to keep him comfortable. But he saw me and his eyes lit up.  

My heart skipped a beat, I thought I had missed my opportunity to let him know that I was here. 

I am your sister.  
Nuh unh. 
Open your eyes Greg.  (I took off my mask.)  You believe me now?
(He opened his eyes wider and cracked a smile.)
Why are you here? I told you, you didn’t have to come.
I know, did you think I was going to listen? I told you I’d be right here by your side. 

So we have yet to see what this intermission means for the completion of my terminal degree. In the meantime, I will be here with my family, celebrating life. And while all of this definitely surpasses my understanding, there is a peace that is found when you lean into God during these times.