From patient to practitioner

Traumatic event survivors often experience a phenomenon known as “time dilation” when describing their thoughts as they wait for the arrival of first responders. The cognitive portion of the brain seems to render the event in slow motion so it can adequately inventory details. On a dark night in June 2020, Julia Gangemi opened her eyes to find herself lying on the ground, unable to stand, recognizing she had just been thrown from a boat run aground and into heavy brush near the Westport River in Massachusetts.  

She clearly remembers waiting for the ambulance to arrive, somehow confident help was on the way, and thinking about what was next. “I was thinking this is bad, but I just have to hold on till the ambulance gets here. The doctors will know how to fix it. 

“But the longer I laid there, I knew enough to realize that’s the problem with paralysis and spinal cord injuries – doctors don't know how to fix it. This isn't something they're going to be able to fix, and I'm gonna have a long road ahead of me in recovery. But I’m gonna figure this out.”

Just days shy of her 21st birthday, Gangemi was med-flighted to Rhode Island Hospital’s Trauma Center where doctors confirmed her back was broken, the spinal cord at the T4 vertebra level completely severed. The loss of all feeling and motor control below the severed vertebra was immediate. She faced an extensive recovery in the hospital, followed by both inpatient and outpatient stints at rehab facilities. As a fourth year computer engineering student at Northeastern with an undefined vision of future work with medical devices and time to think, this is when her journey as patient to future practitioner started to come into view. 

“I had a pretty good grasp of what could be done with technology,” she said. “And I just remember thinking from that hospital bed of so many little things that could make life easier. They would come in to draw my blood, but the person would push the rolling table with my water away, and then hours later I would still not be able to drink water, because it was across the room and I couldn't reach it. I was thinking they could put these tables on motors, or they could have some sort of control system so I could move the things in my room. I’m conscious, I’m alert, I’m aware of my hands, thank God! I know there are gaps that technology could fix, and we have all the technology. 

“Which then led my thoughts to people who work on brain computer interfaces, and they know how to translate those signals into useful signals. Why has nobody bridged the gap between the brain control that we know how to measure, and then put it to some sort of assistive device? Whether it’s an exoskeleton, or even a functional neuromuscular electric stimulator. So I started reading, and realized people are doing this. People are working on it all over the world. And that’s sort of how I realized that all this work was being done, but it’s just still very much in the research stages.”

Her perseverance and resilience rarely wavered during those initial phases of recovery, and she was able to return to a co-op opportunity through Northeastern the following summer at its BCIPY Lab, working on brain computer interfaces in python. She considers this her first foot in the door with research, although she missed three weeks of working there when her physician at Spaulding Rehabilitation, Dr. Ryan Solinsky, suggested she consider serving as a research trial participant with a program out of Brown University, known as the Intelligent Spinal Interface.

“He actually said, ‘Just so you know, fair warning, it’s very invasive. It’s a big commitment, but you fit all the inclusion criteria, and I think you’d be a really good fit for the study.’ I was happy to do that. I was so interested in research at that point, both conducting research, but also being a participant, because I know that they are equally as important. You need participants to keep research going. And that is how I met Dr. (David) Borton and the team. I was actually the first participant in the ISI (Brown’s DARPA-funded Intelligent Spinal Interface study) back in 2021.

“I enrolled in the study and was implanted with two epidural electrodes, one above my spinal cord injury, and one below, and then I stayed inpatient in Rhode Island Hospital for two weeks, testing every day from 8 to 5 with them, and I thought it was the coolest thing ever.

“Professor Borton’s study was doing almost exactly the thing that I had thought I had come up with on my own a year ago in the hospital room,” she laughed. 

“The second they implanted the device for the study, and stimulated the lower electrode, my legs moved. It wasn’t a useful movement, but they moved. They could modulate the signals enough to evoke activity. They stimulated the upper electrode, and I could feel the stimulation within my upper back and chest. I could feel all the different patterns of the parameters. I couldn’t tell where my legs were in space, but I could feel the stimulation. From the second they implanted me, I just could see all the potential: if we could map that stimulation in a meaningful way, it could become useful sensory feedback, something I could learn to interpret.”

Even now, Gangemi’s excitement suppresses the reality of the intrusive and painful nature of the study itself. “I was in a lot of pain, it’s a huge surgery. And I had these wires routed out of my back, plugged into a computer. It was really hard on my body. But I just remember the whole time, I was dropping hints like ‘I would love to work on this. Are you guys hiring? And they were like, if you want to come back, you can always get your Ph.D.’ And I think they were maybe a little half joking, and maybe I was too, but after finishing at Northeastern and then two more years working at the Inspire Lab at Spaulding, I decided there was nothing else I’d rather be working on right now than this.”

Five years after the accident, and now in the second year of her Ph.D. program as part of the Borton Lab at Brown Engineering, Gangemi awakes every morning with the mindset of a new door opening, rather than closing. However, that does not mean there aren’t challenges every day. 

Managing life with a spinal cord injury is a 24/7 job that involves planning for proper physical health decisions, accessibility and mobility issues, self-care needs, emotional well-being, and continuing physical therapy practice routines. Earning a Ph.D. is also a large time commitment, and there is a lot of competition in Gangemi’s day to meet her needs for both during regular business hours. 

“The work I’m doing here is exciting enough to me,” she said of the effort it takes to keep going. “The people here are amazing, and I even got to work with the last participant in our ISI trial at the beginning of the semester this year. That was really cool to come full circle. As a participant, I was on one side of it, and now, being on the researcher side, and being able to be that support for the participant – to talk to her and answer her questions. From my point of view it was really rewarding. So you just keep pushing … A lot of things in life are hard.”

Although the five-year grant for the ISI clinical trial has ended, it remains the main focus of Gangemi’s research. “We had three participants in the study, and I was participant number one. There was a second participant before I joined the lab, and our third and final participant was just this past February.

“Going forward, we’re designing a take home version of this study. The drawbacks in the original version were that the electrodes were hardwired, with the wires drawn out of their back sewed against the skin and then physically plugged into a computer. That made it so that they weren’t able to leave the clinic. They had to stay inpatient because they had open wounds with wires coming out of their back, which shortened the testing window, limiting the data we could collect. 

“What I will focus my doctoral thesis work on is a more mobile version of this study, where the electrodes will be fully implanted, closed off and sealed. Those electrodes are already safely on the market, and FDA approved. We plan on having a much longer study, maybe two years, where we follow the participant in their home and throughout their normal daily life. The data will be more complete, as it comes from a natural setting and reflects real-world experiences.”

Whether Gangemi follows this career path into industry or academia in the future is still unknown, but for now she is gladly serving as an unofficial ambassador of hope for her community of friends with spinal cord injuries. “They have no idea that any of this is going on,” she said. “Every time I bring something up to them, they’re surprised by the possibilities or that people are working on that. So not only is it rewarding just to be here myself and learn about all these technologies, but it’s really been exciting to share it with my friends, who are not necessarily in the field, but dealing with the same struggles that I am every day, and to be able to transfer that hope to them, too.

“I know the doctors keep telling patients 5 to 10 years, and that’s been going on for more than 15 years, but truly, it’s coming. It's one thing to say to someone, ‘research is so cool’, but to actually share with them the details of who is doing what and where is really fun – seeing their face light up the same way that my face lights up and watching their mind take off. And they have ideas I didn't even think of yet!

“Hope is the one thing that keeps you going forward with a spinal cord injury, and honestly, it’s the first thing that they take away from you when you break your back or your neck. Doctors are quick to tell you you’ll never walk again. This is the rest of your life, and I get that. You know I’m a scientist. I can appreciate the numbers. I understand that by the numbers that is the truth right now. But that’s really not what you want to hear. 

“What you’d rather hear is maybe right now, this is something that you’re going to have to learn to live with. But there are so many exciting things happening. There are so many people working on this. Because having some sort of hope that things are going to get better is a really big deal to a lot of people.

“I know that we’re still far away,” she said. “We need more data, better algorithms, and there’s just a lot of work to be done to map out the human body. We’ve learned so much through research, but there is still a lot we don’t know.  But we’re getting there, and we’ve shown things are really promising. So it is just really exciting to me to be a part of this study and sort of open my eyes to what’s possible.”