In the fall of 2019, Tuesdays at 8:15 a.m. would find the former junior Joanna Buoniconti unhooking from the non-invasive ventilator attached to her body overnight and unhinging from her feeding tube, which pumps half of her caloric intake into her body while she sleeps.
Begrudgingly, Joanna greets the morning.
“I hate having nurses right in my face,” she admitted to me over the phone with the straightforward attitude that characterizes many of her written responses to me.
With the help of her Tuesday morning nurse Julia, Joanna’s morning continues.
In her fuchsia-colored room, The Kardashians play in the background as a respiratory treatment is underway. The chest PT vest Joanna wears is shaking her petite body. Loosening and thinning mucus, the vest rattles and vibrates at a vomit-inducing frequency to those not accustomed. After it is removed, another machine that induces coughing is put on.
Julia transfers Joanna to her open layout bathroom — a spacious room with a sink and brightly lit mirror. Hookups to various parts of Joanna’s daily equipment sit on the sink counter. Sanitizer, which is placed throughout the house, sits on one side of the sink.
The shower is in the back right corner of the room. The wall transitions into grey and white tiles and a shower with a movable head hangs from the wall. There’s a flat white shower bed for Joanna to lie on as a nurse (or her mother if a nurse isn’t there) gives her a shower. Unable to swallow on her own, lying on the shower bed causes Joanna’s secretions begin to collect in her throat. Her throat is suctioned to avoid aspiration before she gets up.
Near the entrance of the bathroom, Joanna is put on her custom-made Rifton toilet. The toilet is tall and elevated. Padded with black air bladders, it’s made for Joanna to sit comfortably on her dislocated hip.
The final step in the routine ends in a spritz of sweet-smelling Victoria’s Secret or Bath and Body Works spray after Joanna is dressed in the clothes she’s picked out in advance.
Joanna rushes down the hallway to make it back to her study room in time for her 10 a.m. class at UMass.
For me, that same Tuesday at 8:15 a.m. would find me working on getting out of bed after a long night of studying. There is no non-invasive ventilator, no feeding tube, no nurse aiding my sluggish moves as I depart from the mattress. I move freely and finish my morning routine independently. I walk out into the crisp air, head to my car, warm it up, and drive off to UMass from Hadley for my 11:30 a.m. class.
I don’t live with Spinal Muscular Atrophy Type 2 (SMA Type II,) like Joanna does.
On a dark night in November of the same year, I paid a visit to Joanna’s house. I travelled from Amherst to Springfield, driving up a dimly lit street past rows of pretty houses and wide driveways. Even from the outside I could tell Joanna’s house was spacious, neat, and quiet.
I rang the doorbell.
A petite, wispy blonde-haired woman approached the glass door with a smile. She opened it with a friendly, “Hi, are you Desire’?” and then laughingly picked up a package waiting at the door between the two of us. The woman, Anna Swiader, is Joanna’s mother, and while she was hospitable, she was focused on keeping a sanitized home.
Joanna, who I’d never met in person before then, was waiting behind her mother toward the entrance of the kitchen. She looked just like she did in a picture she sent me of her working at her desk, her comfortable yet stylish clothing matched her bright pink nails and shoulder length balayage hair. As I came closer with an excited, “Hi, Joanna!” I immediately noticed the silver-brown eyeshadow underneath her leopard print rimmed glasses.
At the request of Anna, I took off my shoes and coat at the door. We both walked into the kitchen, joining Joanna. As typical introductory conversation began to flow, Anna kindly asked me to wash my hands. The house and the hands inside it had to keep clean because of Joanna’s condition. Joanna can’t even visit UMass most times during the year because she’s easily susceptible to sickness.
In the kitchen, Anna and I sat opposite of each other at a table near a window, and Joanna sat in her 600-pound wheelchair between her mother and me.
I talked to Joanna in a slightly indirect way. The delay in our conversation didn’t prevent her straightforward, bold personality from coloring the answers Anna relayed to me. I made out the words in Joanna’s tone, her throat muffling their definition. Anna would repeat them to me for clarity. It doesn’t take Anna much, her mother seems to understand every word her daughter speaks with fluidity.
The sweet nature of the two made way for an oddly intimate conversation to flow between us. It could have been the fact that I felt so privileged to enter their home, but we began talking about family and the certain complexities that come with them.
We talked about Anna’s family.
Anna is from Western Massachusetts. She beamed with pride when she talked about her Polish immigrant parents, who established a family she described as hardworking and honest. Anna said they “worked for everything they’ve got.”
She told me they’re the reason why Joanna’s so persistent and driven. Anna’s upbringing and the commitment to never giving up was passed on to Joanna. It shaped her determined response to life’s challenges.
When speaking of her “brave, perseverant, strong, motivated, and happy-spirited” daughter, Anna got teary eyed, emotion slightly cracking her words.
“Joanna has had such a difficult, such a challenging life psychically,” she said.
I choked up too.
Joanna has been this way, but not exactly this way, since she was a baby.
Anna suspected that something was wrong when baby Joanna was around seven months old. Her daughter couldn’t crawl or sit without support. Even though Anna had no experience with children, as a psychical therapist she was aware of the progress Joanna should have been making.
“I expressed concern to her physician at about six months,” said Anna. “Then he said that it was because of what I did for a living. He said that I was expecting her to be textbook and that all children develop at their own pace.”
After Joanna’s physician advised letting things run their course, Anna waited it out three more months.
Still no progress.
She brought the issue to her daughter’s physician again, who then suggested Joanna see a neurologist in Springfield.
The visit to the neurologist was an eye opener.
Among the tests done on baby Joanna, one struck Anna and sticks with her to this day as something she should have done on her own.
The neurologist laid Joanna on her stomach. Holding the baby around her trunk, Joanna’s body fell limp and plopped right over her mother. A child’s normal response is to instinctively stretch out their arms to catch themselves.
Watching the result of the test left Anna stunned.
“Oh, my goodness…this is serious. This is very serious,” she thought.
After the exercises to assess Joanna’s condition were completed, the mother and child made their way to the waiting room to check out. As they neared their destination, Anna saw something startling.
“I saw her computer screen and I saw what was on it … and it was SMA. She was thinking that it was SMA,” Anna recalled, her words filling the tranquil silence in the half-lit kitchen and living room.
The doctor also thought Joanna might have Pompeii’s Disease, “which was devastating enough,” Anna said. “Equally or more so at that time.”
Anna and Joanna had not made it out of the waiting room when the neurologist came running after them.
“I just want to see one more thing,” the doctor said when she reached them.
That doctor wanted to see blood work. Joanna and Anna were sent a couple of floors down to the lab.
After the blood work, the neurologist came running to the pair again.
“I need to see a couple more things,” the doctor said.
She was looking for a major sign of SMA, tongue fasciculation, which shows up as a quiver, indicating a glitch in neuron function.
At 10-months-old, Joanna was diagnosed with SMA Type II.
According to the National Center for Advancing Translational Sciences’ Genetic Information and Disease Information Center, SMA Type II is defined as “a genetic neuromuscular disorder that affects the nerve cells that control voluntary muscles (motor neurons.)” Their website says the symptoms begin to show from ages six to nine months.
Before the effects of SMA began to further set in, little Joanna loved stuffed shells, hot dogs, and buttered toast cut up into little pieces. She could also feed herself those foods because she had a full range of motion.
Because SMA causes individuals to lose certain functions overtime, Joanna can’t walk, and she has trouble swallowing and talking. She’s lost the ability to lift her arms since her freshman year of college. Anna said these functions may or may not ever come back.
“We’re hoping that it’s gonna come back because she’s on this new Spinraza treatment and she’s getting stronger,” Anna said.
Joanna was not a candidate for Spinraza when it was first approved by the FDA in December 2016. Because of her spinal fusion, the medication could not be administered between the spaces of her vertebrae as it usually is.
“It was nothing shy of devastating to hear that news,” Joanna wrote to me. “Children who receive the medicine shortly after birth are walking and exhibiting no symptoms of SMA.”
Having a solution at hand with no way to apply it made her angry.
“It’s frustrating and maddening to watch your body deteriorate before your eyes and knowing that there is nothing that can be done to stop it can put you in a dark place really easily,” she wrote. “Those were a couple of really hard years.”
By some miracle, during a yearly visit to the neurologist back in 2018, someone suggested a CAT scan to find a point of entry for the medicine, and they found one in her spine.
Getting Spinraza drilled into her spine is not a pleasant experience for Joanna. The benefits of the medication, however, make up for the pain.
“I attribute Spinraza as the reason why I’m able to pursue intense double majors and have so many extracurricular activities,” she wrote. “A year ago, due to the weakness in my hand, it would take me three days to write a 1000-word article. Now I can do it in like, six hours.”
Because of the treatment and the strength it gives her, Joanna’s life expectancy can now exceed the 30 years originally prescribed to her.
As of December 2020, she has regained the ability to lift up her left arm, and she can apply her own makeup.
I was searching for a respectful way to get a little deeper into the family’s world. I knew I’d need to visit Joanna’s study room and see how she operated in it to get the full picture. It felt a little too impersonal to jump into the question after the heavy conversation we just had.
But Joanna quickly offered. She knew the ropes of journalism and understood the kind of access I would need to write a good profile.
Her openness surprised me. Since I first met her, I don’t think I ever stopped marveling over the fact that she let me, a stranger, into her home, life, and story.
I followed Joanna and Anna out of the kitchen and down a dimly lit hallway. The hallway was tastefully decorated with paintings that complemented the large golden vase of flowers toward the front door.
Joanna rolled to her desk and began to set up, showing me how she does her work.
“This is where the magic happens,” she said with a smile.
After a little help positioning her hands on her computer mouse and logging into her MacBook Pro, Joanna is free to type on her own, using a trackball and an on-screen keyboard to do homework assignments, answer emails and, of course, write articles.
Joanna has a school room because she likes her space. Her wheelchair fits perfectly beneath her downward angled desk. Her laptop sits on the surface, with a silver mouse, dotted with a large red scroll button. Next to Joanna’s laptop are various books and papers, attesting to her studious nature.
During that semester, Joanna was taking four classes along with writing music reviews and articles about social justice. Joanna worked about six to seven hours a day; her only break would be a nap and an occasional five-minute video break to watch Halsey, Taylor Swift, or makeup tutorials.
Although this format of learning is a good fit for Joanna, it still comes with a lot of struggle. UMass is a social campus. With 22,660 undergrads, there are seas of people to meet and interact with. I wondered if Joanna felt left out at any point so far in her college career.
“I more miss the social slash making friends aspect,” Ruth told me, reading Joanna’s written replies to me over the phone.
Joanna has a friend named Dominick who has the same type of SMA that she does. He studies in California and they talk all the time.
Not being actively on campus created a sense of loneliness under the business Joanna kept up.
Joanna’s persistent attitude bore a negative side. “These past two semesters, I’ve been investing so much time into establishing my career and writing skills that it hasn’t really hit me yet,” she said.
“It’s hard making friends at the campus,” Joanna explained. “It’s hard getting to know people when you’re not really there.”
In a sense, Joanna can be on campus through UMass’ classroom assistance through the Disability Resource Department. With their assistance, Joanna could electronically attend class with the help of two volunteer students, a notetaker and another in charge of managing Zoom.
Despite the more artificial connection to campus, Joanna was able to establish something a bit more hands-on. She felt more enabled to own her identity as a student when she joined the student-run newspaper The Massachusetts Daily Collegian.
“Writing at the Collegian was the first organization that I joined and has really helped me in that respect because it has, I think, helped me to make a name for myself within the campus community without being there,” she said.
Now a senior, she’s using the remainder of her time as an undergrad to set herself up for post-grad life. Joanna is full steam ahead to her goal of landing a job in journalism. She completed an internship at a local newspaper called the Daily Hampshire Gazette (where she’s now a columnist), and is serving managing editor at student-run publication the Amherst Wire.
Although it may look like a streak of success for the English and journalism double major, college has come with many hardships, even beginning before attending college.
A year before Joanna applied to UMass, she toured colleges with her mother. Joanna loved the concept of Mount Holyoke College, but after visiting on Veteran’s Day, she found it wasn’t a good fit because of the outdated structure of the campus. The disability counselor told them the Wi-Fi wouldn’t be ideal and the buildings were outdated. Because Mount Holyoke is a private college, they would also have to hire a private assistant which would have been a huge commitment for the two.
Joanna and Anna constantly hit the wall of inaccessibility during their college touring.
Amherst College was another campus not well equipped for students with disabilities.
“So, we went on the tour and quickly realized she couldn’t even get everywhere the tour was going because their landscape is like this,” Anna said, motioning with her hands to hint at the hilly landscape and spaced-out nature of Amherst College’s buildings.
Joanna was accepted to Emerson College, but she couldn’t attend because commuting to Boston just wasn’t feasible for her, and neither was living in a dorm.
“It was just a real journey learning what the different schools offered in terms of their disability resource department,” Anna said.
This issue of inaccessibility on college campuses is a lot bigger than it seems. According to 2016 report from National Center for Special Education Research, students with disabilities don’t feel equipped or supported enough to thrive in college.
Fifty-five percent of those interviewed went on to post-secondary education. The data, based on graduates who had been out of high school for up to six years, also said they were less likely to enroll in post-secondary education than 62% of their peers.
With limited wheelchair accessibility and minimal consideration to the full spectrum of disabled college students, it’s easy to not want to jump over the continuous hurdles.
Joanna, ever aware of the challenges set before her, seems to plow through the limitations inaccessible campuses tried to place on her.
In 2021, she will graduate, and hopefully with job offers. If not, she plans to pursue a master’s degree in English.
In an ideal world, on that sunny day in May, she’ll wear the traditional long, black silky gown. It will flow down her legs and settle into the creases of her legs against her wheelchair.
Underneath the gown would, of course, be a dress. Joanna’s hair will be shoulder length, curled by her grandmother, and possibly dyed red, as she was on a continuous kick about the color.
“But I’ll probably have it my natural color during my graduation because every time I dye my hair, I miss my natural color,” Joanna wrote.
The traditional black cap would also be accounted for, the mustard yellow tassel on top just waiting to be flipped left.
A loud and somewhat echoey “Joanna Buoniconti” would sound over the microphone to the thousands in attendance at McGuirk Stadium. Joanna’s cousins from Texas, who she hopes will attend, will be cheering in the crowd.
Joanna will move across the stage to receive the product of years of hard work and determination, feeling the whole journey culminate in that one emotional moment.
“I hope that I feel accomplished and proud of myself, because I have a tendency to be very critical of myself,” she wrote. “I hope to close this chapter in my life with hope and gratitude in my heart.”
Diploma in hand, the smile on Joanna’s face will be mirrored on the faces of her mother and the others in attendance.
The years of assignments, long hours, and virtual classes will be over, but the hard work will not end.
“Because of my disability, people always assume that I will never be able to amount to anything productive in society and I’ve worked hard to never have to accept that fate because I want to be successful,” she wrote. “I want to have my own apartment and house one day. I want to have a family one day. More importantly, I want to be seen by others for what I can do, not for what I can’t.”