Author Interview: Jessica Buss
Jessica Buss joins me today to talk to us about her writing and her new book, Gray Matters. She got the inspiration for the book from her own experience with a brain tumor. Happy Release Day, Jessica! I'm so happy that you are here with me.
What were the first signs you noticed that something was off? How were you evaluated? Tell us about the moment when your world changed, if you want.
JB: I had suffered from migraines for years when everything came to a head. Yes, I totally meant that pun. My first indication that something wasn’t right was on October 31, 2009. Yes, I remember the day. I was halfway through my second pregnancy and woke up feeling strange. I was really dizzy, and my balance was off. It was very disconcerting. I called my sister, who’s an OBGYN, and told her what was going on. She told me it was probably vertigo and that it was a common symptom in pregnancy and nothing to worry about. Later that day, when we got our kids together in their Halloween costumes, she checked me out. Her diagnosis was still vertigo. That same feeling and many other symptoms lasted throughout the remainder of my pregnancy. I saw an ENT to see if he could alleviate the vertigo, but the maneuver he advised only made me throw up.
As my pregnancy continued, the symptoms persisted. I was exhausted beyond normal expectations, didn’t trust myself to drive, and also suffered from migraines again, which had been absent during my first pregnancy and half of my second. My sister and doctor insisted it would all subside after delivery. Because of my health and the fact that my husband broke his leg in two places, requiring surgery only a month and a half before my due date, my doctor decided to induce my labor. My dad dropped us off at the hospital on February 3, 2010. Labor went fine, but every time I bore down to push, it felt like my head was going to explode. The pain in my head was agonizing; it made it difficult to embrace the moment my son arrived healthy. Following delivery, I was still dizzy, and my head throbbed constantly. My husband was home to help for two weeks, and I struggled the entire time. Every time I tried to nurse, the act of bending my head forward sent crippling, sharp pain racing through my head. We ended up having to supplement him with formula, which was devastating to me because I was in too much pain. I was still off balance, and I didn’t trust myself to hold my newborn unless I was sitting. When I needed to move him, I would scoot around on my butt until I got to where I needed to be, then I would carefully stand up, using whatever was near me as a brace. My mother-in-law came to help me for about a week when my husband went back to work, and I was grateful for her help, but I felt horrible that I couldn’t care for my children on my own.
That feeling ate at me, especially because I didn’t understand what was wrong with me.
During that time, I turned 30 and had the worst migraine of my life. My OBGYN doctor had already ordered a referral to a neurologist at my two-week checkup, and when I went in for that, I passed every test she gave me except that I couldn’t walk a straight line. She ordered an MRI for me for Friday, February 27th.
On February 25th, when my son was three weeks old, I started the day with what had become my normal. I got my 2 ½ year old ready for the day. I packed a bag with things I might need throughout the day, tossed it over my shoulder, and took my 3-week-old son from his bassinet and scooted over to the stairs. With him in my arms, I scooted down the stairs, through the house, and to our living room. Once I got him into his infant chair, I got my eldest son breakfast and made my way back to the couch. I turned on the television to Sesame Street and tried to nurse. Again, pain ripped through my skull. I knew I needed to make a bottle because I couldn’t nurse him. When I went to stand up, I couldn’t feel my legs. Panic raced through my body as my 2 ½ year old danced to some song on the television. Questions filled my mind. What was I going to do? Was I dying? I knew I needed help, but this was years before I had my cellphone within reach all the time. It was actually in my diaper bag, hanging in our mudroom. I knew I needed to call my husband, but I didn’t know how. I remember asking my son to “go get Mommy’s diaper bag,” and like the true helper he’s always been, he tried his best. I tried not to let him see my fear. Finally, after the fourth time, he dragged back his brother’s infant car seat. It broke my heart. I couldn’t control my tears after that. Knowing I had to figure out a way to call for help, I set my youngest on the couch next to me; I slid to the ground and then reached for him to put him up, resting on his Boppy pillow. By this time, he was screaming because he was hungry. I gave him a pacifier, but at only three weeks, he didn’t know how to use it well. I showed my oldest how to hold it for him and then dragged myself across the living room to the kitchen where we had a phone. Reaching up the cabinets to the counter, I struggled to grab the phone. When I finally got it, I dialed my husband and said, “Something’s not right. You need to come home now. I think I need to go to the ER.” He hung up and called his mom while racing out to his truck. He arrived minutes before she did. When he got home, I told him to call an ambulance because I still couldn’t walk. He did. They arrived right after my mother-in-law, who’d already gotten a bottle for my newborn, and ushered them both out of the living room while I was being assessed. Due to my high blood pressure, the horrific migraine, my loss of feeling in my legs, and that I’d only given birth three weeks before, they agreed I should visit the ER. By the time that was decided, I had feeling back in my legs. I was weak and wobbly, but they got me in the back of the ambulance for transport. There were no lights or sirens as we drove through town, and I second-guessed if I was being dramatic. I apologized to the EMT in the back with me, and he told me he’d feel better if I were checked out. Then he floored me when he asked if my husband had broken his leg a few months earlier in a men’s hockey game. Yes. Apparently, he was on that call too. When we arrived at the ER, I remember one asking me how I felt, and I told him not well. Then had a five - minute-long grand mal seizure. That earned me a CT scan, revealing a mass. The neurosurgeon on call ordered an MRI. I had another seizure, and those images showed a brain tumor, cyst, and hydrocephalus. I don’t remember any of that, but my family was told I needed emergent surgery. I was taken to the ICU, and the next day I underwent a 5-hour-long craniotomy. My surgeon informed my family that everything went well and I’d be going home in 3-5 days. Then I woke up from surgery, and here’s where my memory begins. I felt panicked because I couldn’t swallow. I felt like I was drowning. Not long after that, it was understood that I could no longer swallow, talk, or walk. The days-only timeline was shut down immediately as my family went into crisis mode. Over the next six weeks, I lived at the hospital, more than half of that in the ICU, fighting. While there, I suffered a massive DVT (from the bend in my elbow to my shoulder) resulting from a medical error while attempting to put in a PICC line. I narrowly avoided receiving a tracheotomy. The temporary feeding tube up my nose was replaced by a permanent one in my abdomen because I had ripped it out one of the few times I slept. I began learning to walk again. Once I was more stable, using a walker and able to do transfers without assistance, I was moved to the rehab unit for the remainder of my stay. I had therapies, OT, ST, and PT twice a day. I developed pneumonia and had my first vocal fold injection to assist with my paralyzed vocal cord. I learned I had double vision and was fitted with prisms on my glasses. Throughout my stay in the hospital, my heart rate and blood pressure were irregular, leaving me with fainting spells if I stood too quickly. When I was finally discharged, I was sent home with medications, a walker, all the gear to accommodate eating through a tube, and many more medical tools and interventions. I continued all my therapies, eventually graduating from them. Months after discharge, I graduated from the walker, was cleared of seizures, and over a year later, I finally had my feeding tube removed. Even 16 years later, I still have issues with my vision, my swallowing, my speech, and my gait. My entire world changed, but with two small children, and a husband I adore. I didn’t have any other choice but to pivot. I wanted to be active in their lives, and I have fought to do that. It hasn’t been easy, and some days, I still struggle. But I’m alive and a true miracle. God isn’t finished with me yet.
Radiation, chemotherapy, Surgery?
JB: I had a hemangioblastoma, a noncancerous tumor. It was located on my brainstem. The treatment was total resection (craniotomy). I had to go through genetic testing a few months after discharge to make sure I didn’t have a condition (Von Hippel-Lindau - VHL) that is commonly associated with my tumor type. Thankfully, I don’t. I didn’t have to do radiation or chemotherapy. I just had regular MRIs, and after 15 years of clean images, I’m considered stable and was released by my neurosurgeon.
JB: You ask what was going through my mind; the answer is simple: everything you could imagine. I had many dark days where I was convinced I wasn’t going to survive. It was the hardest thing I have ever had to face. I was lucky to be surrounded by an incredible, selfless husband and a supportive, loving, and encouraging family.
JB: Even though my tumor was benign, and I didn’t have to deal with radiation or chemotherapy, I had numerous deficits I have had to overcome and several that I will always have. My entire life changed. Initially, I learned how to face each moment as it came. As time passed, that became easier, and I was able to look at the day, then the week, month, and year. Now I dream about the future.
Who were your supporters during this new journey?
JB: My biggest supporters were my husband and my family. I didn’t want other people to see me so vulnerable, so I didn’t welcome visitors. My mom and middle sister initiated prayer chains around the world, and they kept friends, family, and colleagues apprised of what was happening in real time. I have a copy of their correspondence, and even today, it’s hard for me to read. I was covered by so many prayers and love.
JB: Advice for someone who was just diagnosed–First, breathe. Second, feel your feelings. Third, gather information and ask questions. Fourth, ask for help. Fifth is the motto I adopted for myself: keep pushing. I won’t tell you it’ll be easy. Each person’s experience is different, but surround yourself with a tribe that will encourage you, support you, love you, and most importantly, be real with you. If you need to mope or feel bad for yourself, set a time limit for that, then move forward. YOU are the reason for how your story turns out.
JB: My experience inspired Gray Matters. It isn’t my story, but some of the emotion within it is certainly something I experienced. Afterward, I was a different person. I was incredibly vulnerable, asking those around me to love this new version of me. It was much like beginning a new relationship, seeking acceptance from those whom I cared for. This book was a test for me to see if I could talk about brain tumors. I’m working on my memoir, and this was a way for me to deal with some of the emotion of what I endured and figure out what I want to say, what to share.
play in the plot?
JB: I’ve heard: write something you know. So I did. The story flowed naturally.
Were there scenes or moments you wrote that felt especially difficult to create?
JB: I wouldn’t say anything was particularly hard to write. The emotion in the first chapters, when she’s learning about her diagnosis and then dealing with surgery, was one that I took my time with and channeled what I remember feeling. Unfortunately, I had to rely on memories that occurred after my surgery, but it was with the same surprise and fear I’m sure I would have felt if I had been more aware the day before my operation.
JB: The theme I’d like the reader to embrace is: sometimes stepping outside of your safe zone can lead you to things you never imagined.
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