The night before the anniversary of a routine chiropractor visit that left her daughter with a brain injury, Darlene Jensen sat up watching videos taken in the months immediately following the fateful day last June that would forever change both their lives.
Her daughter, 28-year-old Caitlin, had been fit and healthy, looking forward to working in the science field after graduating with a degree in chemistry and biology, when she arrived at the Georgia chiropractor’s office on 16 June 2022. Within 20 minutes, her future would be hanging precariously; Caitlin suffered a vertebral artery dissection, which causes stroke – cutting off blood flow to the brain.
Ms Jensen, now 50, arrived at the chiropractor’s office after being told on the phone that something was amiss, and Caitlin was already in an ambulance — but her mother never could have fathomed that the trip to the ER would be the very beginning of a long, arduous and ongoing journey through hospitals and rehabilitation centres.
Emotional and exhausted as she speaks on the anniversary of that day, Ms Jensen tells The Independent that watching footage from last summer reminded her of just how far Caitlin has come — though much progress remains to be made. She’s seen a major difference in “her eyes, especially”.
“I forget how, when her injury first occurred, her eyes were turned inward, both of them, like toward each other — and she had very little vision,” Ms Jensen says. “And we didn’t know if that was going to be permanent. I mean, looking at the videos, it almost looks like she is blind — and she was, kind of, for a little bit, because they were turned inward, so it was difficult for her to see with both eyes.”
Now, however, Caitlin “can focus better — she can look more directly at you,” her mother says. “Her left eye is not turned inwardly at all; her right eye is barely turned inward, if at all — and, most importantly, through therapy and doing her exercises, her eyes are finally beginning to work together again. And that’s a really big milestone.”
The past year has been filled with small triumphs and setbacks, therapy and tests, and a veritable mental and emotional rollercoaster ride.
“What Caitlin says is, ‘The best therapy is time,’” her mother tells The Independent. “And she’s right … the best therapy has been time, and that’s what they told us at the beginning — that it was going to be a long road, it’s going to take a long time, but that you can make progress, but that you can make progress, and that has proven to be the case.”
According to a 2021 piece published in Stroke: Vascular and Interventional Neurology, vertebral arterial dissection “can result from trauma of varying severities ‐ from sports, motor vehicle accidents, and chiropractor neck manipulations to violent coughing/sneezing.
“It is estimated that 1 in 20,000 spinal manipulation results in vertebral artery aneurysm/dissection. In the United States, patients who have multiple chronic conditions are reporting higher use of complementary or alternative medicine, including chiropractic manipulation,” the report states.
“Education about the association of VAD and chiropractor maneuvers can be beneficial to the public as these are preventable acute ischemic strokes. In addition, vertebral artery dissection symptoms can be subtle and patients presenting to chiropractors may have distracting pain masking their deficits.”
Chiropractors argue that dissection itself can be the cause of the pain leading patients to seek care — claiming their own adjustments were ancillary to a larger problem in many cases.
Caitlin and her mother had no idea there were risks associated with chiropractor adjustments, her mother tells The Independent — but have been horrified to hear from other families similarly impacted. It has become something of a mission for Ms Jensen to raise awareness about the dangers.
“There have been many people that have contacted me, and I would like to sit down and make a list of everyone and kind of bring everybody together with this, because there have been a lot of people that have contacted me,” Ms Jensen says. “I got a message this week from another lady that had the exact same thing happen to her … It makes me sad when I get a message like that, because I don’t like that there are so many people out there that have had this happen to them.
“But at the same time, I think Caitlin’s story can get out there and stay out there, that maybe it will help save other people.”
She says that, “from the time this happened … every doctor that we’ve had has, unfortunately, seen these injuries before and are very well aware.”
The general public, however, remains largely ignorant, in her experience.
“People are pretty bold in saying, ‘Well, what happened to her?’” Ms Jensen says, explaining how she’ll get approached in elevators and all manner of locations by strangers querying her wheelchair-bound daughter’s condition. “And I’ll tell them, and their eyes will get wide — and I haven’t had a single person that’s like, ‘Oh yeah, I’ve heard of that happening.’
She says: “I will tell anybody that will listen, what happens if they will then take that and tell someone else and just get the awareness out there.”
Family, friends and the wider community have rallied around the Jensens. In February, they moved into a specially-outfitted three-bedroom ranch home, complete with ramps and full wheelchair access. Their neighbours include a paramedic and nurse practitioner — which proved hugely fortuitous when disaster struck, yet again, just days after the family took up residence in the new home.
Caitlin suffered a fall when her wheelchair tipped over, and Darlene can barely get the words out, months later, to describe the terror she felt.
“I panicked, which also upsets me – that I even allowed myself to panic – but I just started screaming ‘Help!’” she says. “The neighbors were so fast; they ran right over. It turns out the man that was out there had been a paramedic for many years … and they were really fantastic and helped get her just kind of stable. I put a pillow under her while we’re waiting for the ambulance to get there, which was very, very fast.
“That was one of the deciding factors in choosing this home … the proximity to our local EMS station is less than half a mile away,” she says.
The accident sent Caitlin back to the ICU with a brain bleed, her mother posting a photo of her in the hospital bad with a caption that began: “This is not the homecoming update that I had planned to share tonight.”
Following scans, staples, blood thinners and treatments, Caitlin eventually returned home as the community that had organized to prepare the home now turned their talents to setting up a meal train.
“You know, I’ve heard of meal trains and that type of thing, but I’ve never really paid much attention to them,” Ms Jensen says. “But let me tell you, a meal train for someone that is in this kind of situation is so meaningful and helpful. On a practical level, people would drop off meals, and with a little note or a little flower, that kind of thing. And it was really wonderful.”
Caitlin’s brother, Caleb, is now home for the summer from Georgia Southern University, where he will soon graduate with a degree in manufacturing engineering, his mother proudly says. He’s helping out, as are other friends and family; Ms Jensen is continuing to navigate a new normal of caregiving while braving bureaucratic red tape. She has been unable to return to the job she loved as office manager for a transmission shop.
Neither her life — nor Caitlin’s — looks anything like what they would have expected on this same morning last year.
“I miss my job, and they need me there, but I just can’t do that right now,” Ms Jensen says. “So that has been difficult for me on a personal level to just adjust to going from, you know, looking at future plans to travel and have my empty nest, to being a full-time caregiver — and an unpaid caregiver, at that. It’s a lot.”
A GoFundMe has raised nearly $180,000, Ms Jensen has finally been able to set up government disability benefits for Caitlin, and the family received an insurance payout from the chiropractor — but practitioners within the field “are simply generally very underinsured,” Ms Jensen says.
“And so the insurance settlement that we did receive from the chiropractors insurance company was very small, and certainly not enough to care for her life expenses — and that has to go into trust to be held for her in the future as well, in order for her to be able to qualify for” other benefits.
“The whole process has been very frustrating … because not only is the small amount of money she has in a trust, but then you have to pay people to then take care of the trust,” Ms Jensen says. “And that is taking more money than you would make in interest on the trust.”
She continues: “Everybody wants a little piece of it, including the insurance companies … now Caitlin’s legal team has to fight both of these insurance companies, which then of course creates more legal fees for us. So then there’s more money being taken. It kind of makes you wonder what the point of insurance is, when they pay claims and then turn around and want it all back … the amount of money that most people receive, including Caitlin, is so small that it will never be enough to care for her throughout her lifetime.”
Now — at a time when Caitlin had hoped to be researching microplastics in wastewater and the environment — her mother is instead fighting to get insurance to pay for a frame that “allows her to stand as long as she can tolerate it to help rebuild muscles and get those neurons firing.”
During the few snatches of unscheduled time she has, Ms Jensen is researching therapies and specialists not just for her daughter but for the rest of the family. While Caitlin was being treated in Atlanta, she said, they had access to a neuropsychologist “because they are very great at having an all-encompassing program … your mind and body are very deeply connected,” she says.
A similarly qualified professional in the Savannah area would greatly benefit the Jensens, but the list of needs following the out-of-the-blue tragedy remains long.
“I’m always looking for new tools, new therapy, new research,” Ms Jensen says. “I read a lot at night about ways I can [help]. I mean, I lay in bed reading reading articles, there’s like research being done, 11 electrodes being placed in your head to help with cognitive abilities. And so I think, well, maybe that could be used for neuro regeneration process, that type of thing.”
A year later, though, she’s trying to manager her expectations and not “really look super far out, as far as like, well, in one year, I want her to be walking.”
“We learned that very quickly,” Ms Jensen says. “She had made a goal for herself that she wanted to be able to have Thanksgiving dinner. And then you know, as Thanksgiving got here, we realised that there was no way she was going to be able to do that. And that was very difficult for her. So we try not to make like big grand goals like that and just take it day by day — and just get up every day and do the absolute best that we can for that day.
“And then, when you look back over time, you see that the gains add up.”
The difference in Caitlin’s gaze and vision — exhibited by videos from last summer — is one example of that.
“We do exercises with her eyes; she wears glasses that help correct it with tape that goes over the most effective side that kind of forces the eye to try to look out and around the tape, and that has worked very well, Ms Jensen says, adding that it has “made a tremendous difference.”
The attitude of her daughter — still smiling and determined as she struggles to reclaim basic tasks — bolsters Ms Jensen through the hardest of days. And there are many of them, she admits.
Caitlin “is what keeps me motivated to keep going, because she is so motivated,” her mother says. “She has such an incredible strength and determination to get her life back, and she she gets up every day with a smile on her face and ready to get to work.
“That doesn’t mean that she doesn’t have hard times; she certainly does. I mean, we had a swallow study [at the beginning of] this week … that didn’t give us the results that we had been hoping for,” she says. “But there were so many good things in it as well. And just the fact that she’s far enough along to get the swallow study was a big deal, but it was very hard, and she and I both cried.
“When she gets upset, it’s hard for me, because I just deeply feel her feelings.”
The pair will listen to podcasts or watch home improvement shows on television, but Ms Jensen tries to monitor content and “keep it light” because Caitlin’s “emotions are just at the forefront at all times … I try not to add anything to her life that is going to emotional,” she says,
“Me, too; I mean, the smallest thing can set me off,” she adds. “I’m in tears, especially in the last couple of weeks with this one year mark coming up. I mean, this tiniest thing can cause me to start crying.”
In the meantime, mother and daughter are persevering as best they can, striving for those small gains as Ms Jensen steels herself for the ongoing bureaucratic and logistical struggle.
“It is very frustrating,” she says. “I get extremely angry at this system that we have and the lobbyists that keep it in place, because there are a lot of people making a lot of money off it … if I could get her in front of the executives or the legislators, we will do it in a heartbeat.”
Still, she is committed to keeping the spotlight on her daughter’s story — not least in the hopes that it will save someone else from suffering the same injury. Ms Jensen says it’s important to her, as she shares updates on social media, to be hugely transparent about the ordeal that has upended her family.
“When I first started writing about this on social media, Caitlin thought that I was only posting the good and not the bad,” she says. “And I said, ‘No, I’m trying to be as real as I can.’
She continues: “I don’t think there’s very much on social media that’s real, and I think, in a case like this especially, it is extremely important to be honest and real about all parts of it — because it’s not all sunshine and rainbows and there are times where I just hold her in my arms and we both just weep … and then there are other times that we laugh until we cry.
“So, you know, it’s it is all encompassing with the emotions, for sure — but I do think it is important to be very real with people.”
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