Dec. 26, 2021
Eve After Eden: Relentless, Resilient and Resolute
By Jemi Lassiter
“There are two dates that stick in my head. December 31, the day my first child would have been born and Super Bowl Sunday, the day I had a stroke,” said Kassandra Johnson, a preschool teacher and former yoga instructor. “Right now, [my relationship with God] is interesting.”
Johnson did not leave Eden by choice.
I met with Kassandra Johnson in her home one Saturday afternoon in December.
She and her husband were busy dressing their two children for a day of fun in Prince George’s County, Maryland. While she welcomed me in, she also assured me that everyone would be gone in just a moment.
Then, she and I could speak.
Kassandra Johnson did not leave Eden by choice. An undiagnosed brain tumor caused the wife and mother of two to have a stroke that upended her life.
Her husband Brandon said a quick hello to me as he pulled coats from the hall closet.
Their two-year-old daughter Aminah stared at me from the top of their split level house just long enough to size me up. (There is nothing quite like a three year old questioning your purpose, determining if they could “take” you, and deciding if they want to share their parents with you. This little girl’s resting face is on another level.)
Their five-year-old son Eli paid me no mind and happily put his shoes on the wrong feet before heading to the front door.
In the blink of an eye, the hurried husband of two and elementary school principal is out the front door and the house is quiet.
We settled into the Johnson Family’s overstuffed sofa for a three hour conversation about womanhood, wifehood, and motherhood. I was curious to know Kassandra’s story of recovery and self-discovery after a stroke upended her life.
She wasted no time filling me in.
“Backstory, I had been pregnant before Eli,” said Johnson. “We lost the baby before Eli. That was really, really hard.”
The baby had no heartbeat and was not growing but her body’s hormones continued to react as if she were pregnant. Initially, her obstetrician/gynecologist (OB/GYN) assured her that the baby would be naturally expelled. That day never came and she was prescribed pills to cause a miscarriage. After two attempts, the pills failed to expel the baby as well. Now distraught from feeling pregnant but no longer expecting a baby, Johnson agreed to a dilation and curettage procedure which surgically removes the lining of the uterus and all of its contents. She recovered at home.
“December 31 is always a thing for me because that was my first due date. It didn’t happen,” said Johnson.
She questioned why God would do this to her. She felt she had a calling on her life to be a mother and even began to revere women who had become mothers. A failed pregnancy momentarily shook her faith.
“I realize the lesson from the miscarriage. I was placing motherhood on a pedestal. It was becoming an idol to me and God removed it,” explained Johnson.
Three months later, she was pregnant again.
“With Eli, I was just like ‘God, please just let this baby stay’. I want him to be safe. There was a lot of anxiety,” said Johnson.
In July 2018, she gave birth to a healthy baby boy.
“It was hard,” said Johnson. “I quit my job because I wanted to be there for him. He never had [store bought] jar food. He was vegan for the first two years of his life. I cooked and blended everything he ate. I breastfed him whenever he wanted and I pumped. So, Eli had breastmilk stored in the freezer. He was a healthy boy.”
Eli’s pediatrician agreed with Johnson at his five month appointment. At 20 pounds, Eli was in the 95th weight percentile.
Brandon and Kassandra Johnson celebrate at their gender reveal party with their son Eli.
Nearly two years later, Johnson and her husband were expecting a baby girl but throughout her pregnancy she felt odd sensations in her right hand.
“I remember my thumb nail on my right hand went numb,” said Johnson. The numbness spread to her fingers then her hand and wrist.
“My hand felt like when your foot falls asleep.”
She shared her concerns with her husband and doctor but her symptoms were dismissed as pregnancy-related.
Although doubtful, Johnson trusted the feedback of her OB/GYN. She began to work more with her left hand in hopes that her right hand would get back to normal later on. Regular visits to a chiropractor for adjustments were scheduled and Johnson practiced maternal yoga in hopes that some of her symptoms would be alleviated. After all, everyone agreed her symptoms were just because the baby was laying in an odd position.
In the midst of her unexpected self-care routine of yoga, adjustments, and prenatal appointments, Johnson decided to be present in the moments of Aminah’s life rather than plan them like she had for Eli. She would nurse on demand but not store breastmilk. She would blend food as she made the family’s dinner rather than cook and blend in advance for her daughter.
The big day came in January 2019. Johnson went into labor at home and Aminah arrived three hours later. Life seemed picturesque but the moment was short lived.
While the details of her life before came easily to her during our interview, here, she is careful to say everything she remembers and feathers in what she has been told by trusted family and friends.
“It was ten days [after Aminah was born],” said Johnson. “I was happy. I just had headaches everyday. I was drinking water, taking ibuprofen, emailing my doctor [about the headaches]. Nothing was working. That Monday I was scheduled to see the chiropractor. I didn’t make it because Sunday night I had the stroke.”
“I’m talking to my mom and I say, ‘Mom, my head is really hurting’. She tries different things like rubbing my feet but I’m like this is a migraine. She is talking to me and I’m like, ‘Mom, I need the ibuprofen’. As she’s getting up to get it from out of her purse, I say something to her and I was like ‘I’m having a stroke’. I could feel my face droop and hear the way I was talking. I was like, ‘Oh, I know what this is’,” said an expressive Johnson.
Just over a year before, Johnson’s grandmother was visiting them in their home when she had a transient ischemic attack, a brief stroke-like attack that resolves itself within hours but still requires medical attention. Her grandmother survived. Now, Johnson’s symptoms looked almost identical to her grandmother’s.
“I knew I was having a stroke. I was still thinking very rationally at this point,” said Johnson.
She asked her mother to call 911 and then asked her to call Kofi Essel, a pediatrician and the Johnson’s housemate who was home at the time.
Essel’s connections were instrumental in getting Johnson the care she needed. He called a friend working in the emergency room of George Washington University in Washington, DC and explained Johnson’s condition.
Johnson walked to the passenger side of Essel’s SUV under her own power. Her husband, who was away for the first time since their daughter was born, ran back home and met them in the driveway.
Her head hurt beyond words and half her body started to go numb, more than just her right hand. Fully aware of all that was happening, it was only the thought of her children that brought her to tears in that moment and today as she retells the story to me.
“I started crying and saying, ‘My babies’,” said Johnson. “I didn’t pump this time. There’s no milk. There’s no bottles. I had just been nursing her. What was going to happen to her? She’s newborn. She needs me.”
When they arrived at George Washington University Hospital, Johnson was fully conscious but no longer able to move her body. Her husband carried her into the hospital. Thanks to Essel, the medical staff was prepared for her case.
Once admitted to the hospital, she was taken for an MRI to scan her brain. Scared and in pain, the noise from the machine was so loud that Johnson pressed the panic button to stop the first scan.
“They pulled me out and I remember crying and someone holding me trying to comfort me,” said Johnson.
That is the last thing she remembered from her first 48 hours in the hospital’s intensive care unit. Johnson would spend a total of 24 days in the hospital.
From the MRI, Johnson’s medical team learned that she had a tumor on the left side of her brain. It grew rapidly during her pregnancy, ran out of space, and imploded.
“They think the pregnancy hormones are what caused it to grow so fast,” she said.
Despite the tragedy of this moment in their lives, the tumor imploding instead of exploding was a blessing. Had it exploded, Johnson may have suffered a brain bleed that would have caused more damage and severely decreased her chances of survival. Instead, the tumor bled into itself which caused the stroke but also saved her life.
(Left) Kassandra Johnson spent a total of 24 days in the hospital. (Right) Johnson holds her newborn daughter after waking from heavy sedation.
The next 72 hours were a blur for Brandon, Johnson’s husband. He ate, slept, and lived at the hospital while his wife’s condition was assessed, treated, and monitored. Close friends, family, and the couple’s pastor visited the hospital to support them.
“My eyes were not open but I do remember, my pastor has a very distinct voice, and I do remember hearing him pray over me,” said Johnson.
She had surgery to remove the tumor and medicated to treat the residual effects of the tumor and stroke.
Johnson does not remember seeing her best friend and hugging her shortly after waking up. She does not remember giving her husband a big hug or when her eyes opened.
“One thing I do appreciate is there was a nurse who had me pumping the entire time,” said Johnson. “I really, really wanted to breastfeed my daughter. I was pumping but I had to pump-and-dump,” explained Johnson. The amount and types of medication she was on made her milk unusable. She pumped in the hospital strictly to maintain her milk supply, not to feed her daughter.
Two other women, mothers themselves and close friends with Johnson, made sure Aminah was well-fed according to her mother’s wishes.
Essel’s wife, Candace, who had just welcomed her second child, shared her breastmilk with the Johnson Family.
Another friend who had an older child but was a “super producer” brought her breastmilk to the couple’s home in milk storage bags to make sure the couple’s newborn daughter had more than enough to sustain her while Johnson remained hospitalized.
“Formula never crossed their mind. Brandon and Candace shut down anyone who mentioned formula because they knew that wasn’t what I wanted,” said Johnson.
She is grateful that so many people supported her decision enough to defend it and to provide for her daughter.
The severity of Johnson’s stroke and undiagnosed tumor became clear once she opened her eyes.
“They asked me to wiggle my toes. I could do that. They asked me to sit up and I could do that but I think I needed help,” said Johnson.
Her next mobility test was to get out of bed. With help she was able to not only get out of bed but move across the room.
“I made it to the bathroom using the IV pole, my friend LaToya, and two nurses. When I saw myself, I was like ‘Oh, my God’! My head shaved.
Kassandra Johnson used text messages to communicate until she was able to regain her ability to speak.
Staples. I can’t remember if the bandage is still on or not. There’s some kind of port. I was [thinking], ‘What the hell happened?’,” said Johnson.
The brain tumor. The surgery. The stroke. The symptoms she had experienced throughout her pregnancy and shortly thereafter now made sense.
“I was kind of upset. I knew something was wrong with my brain. I said that several times. Something’s off. I need my head check. But also, when you’re pregnant [doctors] are not going to do an MRI,” said Johnson. “I was angry at first but also, no one would think [the symptoms I was experiencing] were that. Like, it was just random. It was not cancerous. It was just a tumor that broke that caused a stroke.”
Johnson could no longer speak. She made sounds but words were impossible for her to form shortly after she awoke. Her right side was partially paralyzed and doctors did not know if she would regain full functionality.
She had to re-learn how to speak and walk on her own. Intense occupational (OT), physical (PT), and speech therapy began immediately in the hospital after she woke up.
“It was hard but it was also the more we do now the better chances of you recovering,” she explained.
Moving her right arm was painful for Johnson which made physical therapy for her upper body excruciating.
“My arm was still. I couldn’t move it at all,” said Johnson of her right side.
Moving her right leg was awkward but possible. Her team pushed her to become stable and in control of both legs.
“During my therapy in the hospital, I did use yoga to help me regain balance and strength. I was determined to leave the hospital without a cane,” she said.
And, she did.
Once home, Johnson continued taking therapy three times a week until she was nearly able to jog.
Regaining her speech was much harder. She texted with her left hand to communicate until her speech returned but even that was problematic. Johnson struggled to maintain the thought she wanted to share while trying to spell it correctly on her phone using her non-dominant hand.
“It was a lot,” she said. “Even ordering food. I’m pointing at the menu saying this but not that or this but texting ‘no cheese’. So, that was really hard. My sister was really good at understanding what I was trying to say.”
Johnson credits her younger sister, Olivia, with making the next phase of her recovery possible. When Johnson could not speak and only made sounds, it was her sister who understood the intonations in her voice and conveyed her thoughts.
She fought through physical and emotional pain.
As a mother, she could no longer hold her daughter while feeding her. She had to do one or the other: either hold her or position her on pillows and bottle feed her. She couldn’t change her daughter’s diaper, nurse her, or soothe her when she cried. Johnson struggled to forgive herself for not being who she wanted to be for her daughter.
As a wife, she felt like a burden on her husband. She needed his help for so many things around the house and with their children. On top of that, her personality had changed.
“I don’t know if people realize how radiation or a brain injury can change your personality. A stroke can do that, too,” said Johnson. “I was more easily angered. I cried a lot, a lot, a lot. There was depression like I never felt before. I literally called the suicide prevention hotline. I didn’t know what was going on and for this time, I did go on medication.”
She hadn’t been that way before the stroke and pinpointing what triggered her depression was a challenge.
In the first five months of 2019, Johnson had a baby, suffered a stroke, survived a brain tumor, recovered from brain surgery, and completed radiation to make sure the tumor was completely gone.
Kassandra Johnson opted to cut off half her hair during radiation treatments to make sure the brain tumor that caused her stroke was completely gone.
As a woman, she did not know what was next, when her ordeal would be over, or who she would be after this. Her body no longer followed her commands like it once did when she was a yoga instructor. Radiation to ensure the tumor was completely gone, took the vestiges of Johnson’s hair on the left side and she was beginning to experience seizures.
“I was really, really depressed. I had in my mind that this would be the time I would focus on my baby and it shifted to ‘I have to fix myself or focus on myself’. That’s not what I wanted to do,” said Johnson. “My mind was set to be in baby mode and I couldn’t really do that.”
Despite the hardships of her first year post-stroke, Johnson made great progress. She was determined to get better and she pushed herself to get life back to normal for her family. Things were definitely improving by all accounts. The couple bought a new house.
Johnson returned to teaching preschool and OT/PT was no longer required.
When Brandon Johnson reminisced about that first year after her stroke, he was grateful.
“I love her,” he said. “I’m proud of the fact that she has not stopped fighting and not given up on herself. She has shown up in some amazing ways. I’m inspired by her.”
Three years after her stroke, Johnson is a contemplative and resolute woman. Now 33, she knows there are aspects of her life that have changed. She works daily to come to terms with her new life in her new body and acknowledge her limits.
Johnson returned to yoga after her stroke both as a student and an instructor at two studios in the Greater Washington-Metropolitan Area.
She takes anti-seizure medications to stave off future episodes. Low dose anti-depressants help her regulate her emotions.
Over the years, she has sought therapy to talk through some of the personal and marital issues she has faced.
“My wife, while able to do a lot of things, is partially disabled. She is emotionally traumatized. But, my wife has established more confidence in herself to not only physically do the things but actually manage the things,” said Brandon Johnson of his wife’s increasing mental and emotional capacity.
Her children are thriving and, on the surface, all looks well but Johnson has no intention of letting me leave with that impression.
Brandon and Kassandra Johnson two years after her stroke.
Her family made sacrifices to see her through a compounded crisis that took place over a five month span of time. She wants to give them back some semblance of what they had. That starts with her coming to terms with who she is now.
“I thought I knew myself before kids,” said Johnson. “I thought when I had Eli I would just be ‘Kass with a Kid’ and that’s not what happened. Then, after having Aminah, I was different but I had respect for what my body has done. I’m proud of myself and I was getting to a place of acceptance. Then, the stroke happened,” Johnson paused. “I’m really not the same person. It’s a different kind of mourning [for] myself.”
She gives herself credit for the things she can do but still experiences frustration.
“Being a woman and not being able to put my hair in a ponytail is frustrating. When you think about it, you need two hands to do that. I still have heels in my closet that I know I need to give away because I can’t feel my right foot good enough to walk in them.”
Then, there is the woman in the mirror. The face she had grown to love was now different. Her left side aged faster than her right. Her smile was uneven and her speech still was not what it had been. She mourns the loss of those pieces of herself.
“It’s been really hard to recognize who I am, how I am but, I do see the miracle that I lived,” said Johnson.
“I feel like the Phoenix. I could have left this world. I could have been paralyzed from the waist down. I can empathize with people that have gone through adversity because I get it. I can feel it,” she said.
Her stroke and recovery have shaken her faith in God. Their relationship is not as strong as it once was and she is slowly trying to get back to trusting Him.
So much has changed and so much has yet to be discovered but Johnson is ready to push forward. This part of her life’s story reads like a cross between the poem Invictus and James 1:12. She is bloodied but unbowed and, after all that she has endured, one can only imagine the crown that awaits her.
* "Eve After Eden: Relentless, Resilient, and Resolute was originally published December 26, 2021 on Medium.com.