Fighting through the pain: Jarrett Seck’s battle with CRPS

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Seck can no longer move most of his body. He has lost function in both of his legs and his left arm, leaving him bedridden.

Unable to move, Jarrett Seck lies in darkness.

The small amount of light in his room comes from a TV mounted on a wall and a rock-shaped lamp that emits a dim, green light.

The room is decorated with sports memorabilia. An autographed Roughriders t-shirt hangs on a wall, and a University of Calgary Dinos football helmet rests on a shelf — testaments to Seck’s unwavering passion for a sport he can no longer play.

Dave Seck remembers never having to cajole his son into attending football practice. The family had tried getting their kids involved in different activities. Football was the one that stuck.

“He just went whole hog into it,” says Dave.

Seck started off in Regina Minor Football when he was around 10, and then played for the Miller Marauders in high school.

“There’s nothing more exciting suiting up putting the pads on,” says Seck, recalling the excitement game day used to give him.

After high school in 2013, Jarrett became a member of the Regina Thunder, joining the team as it tried to win back-to-back Canadian junior championships.

In a photo of him during his playing days with the Thunder, Seck wears an intense expression on his face. He’s in good shape, which is not surprising given his passion for conditioning and athletics.

Jarrett Seck when he was still playing for the Regina Thunder. Seck developed a rare chronic condition called Complex Regional Pain Syndrome after being injured during a football game in September of 2015. PHOTO COURTESY REGINA THUNDER

During his second season in a game against the rival Saskatoon Hilltops on Sept. 5, 2015, Seck dove to make a tackle but was met by an offensive lineman.

Seck’ s left leg was crushed into his chest.

He didn’t give the injury much thought at first. He even played through the rest of that game. The next day, he could tell something was wrong when there was pain in his leg.

Seck spent the summer of 2016 getting MRIs and seeing specialists. His pain only increased. It got to the point where he couldn’t stand more than 15 or 20 minutes at his summer job. By September, he was in and out of the hospital because he couldn’t take the pain anymore.

Last December, he was diagnosed with a rare chronic pain condition called Complex Regional Pain Syndrome (CRPS). Or “Crips” as Seck refers to it.

CRPS is believed to be caused by damage to the peripheral and central nervous system from trauma such as an injury. CRPS is an abnormal response by the nervous system that amplifies the effects of that injury.  There is no known cure. It’s often difficult to detect, and in many cases it goes undiagnosed. In Seck’s case, he didn’t learn he had CRPS until just over a year after his football injury.

Seck can no longer move most of his body. He has lost function in both of his legs and his left arm, leaving him bedridden at the Wascana Rehabilitation Centre.

In addition to being paralyzed, Seck is constantly in the throws of excruciating pain.  He describes the feeling as something like a grease burn that coats 60 to 70 per cent of his body. At other times it feels as if his bones are being crushed, or his ligaments are being torn.

“It’s the worst, most painful thing you could probably experience,” says Seck.

In the United States, CRPS has been classified by The National Organization for Rare Disorders as a rare disease, meaning fewer than 200,000 people in the country suffer from the illness.

Some of Seck’s symptoms are visible.  His lower legs and feet are almost completely white from flaking, scaly skin and calluses. His toenails are long, as even the simple act of having them clipped would be too painful.

Bright lights or loud noises can also be too much for Seck to bear. He speaks softly while describing symptoms that are ranked above childbirth on the McGill Pain Index.

Painkillers have been unable to provide Seck with any relief. Since the illness is neurological, opioids and methadone have little effect. They merely take the edge off.

Seck tries to keep his attention away from the pain through meditation and watching TV, but it never goes away.

“The pain … it’s there. It’s there 24/7,” says Seck.

Not even sleep can provide Seck with refuge. The pain won’t let him go. His younger sister, Brooklynn, describes him as constantly exhausted. There are only brief moments where Seck will slip out of consciousness before he’s thrust back into a world of suffering.

In April 2017,  Jarret lost he use of his left leg. The condition later spread to his other leg and left arm. Seck is also left-handed, and has had to re-learn how to do simple tasks with his right hand.

Former Regina Thunder player Jarrett Seck, who suffers from Complex Regional Pain Syndrome (CRPS), speaks with his sister Brooklynn in his room at Wascana Rehabilitation Centre in Regina. TROY FLEECE / REGINA LEADER-POST

Seck has undergone back surgery for relief, and also had a neuromodulator installed inside his body. Two leads run from a battery back in his stomach area that go into the mid spine. The device was supposed to block the corrupted pain signals, but was unsuccessful.

Seck has exhausted every avenue possible in Canada for ending his suffering. His best hope now lies at the Neurological Relief Centre in Fayetteville, Ark. Dave, Seck’s father, and his sister will drive Jarrett down to the facility on Jan. 22.

The hope is the treatment there will reduce Jarrett’s pain levels, which would open the door to physiotherapy, and perhaps one day enable him to regain the use of his limbs.

To cover the massive costs of the trip and treatment, the family has turned to fundraising, including online crowd funding. In September, Brooklynn organized a GoFundMe page to raise money for Seck’s treatment and travel to Arkansas.

The family had to purchase a van and have it customized to accommodate a gurney. Seck’s treatment will cost $16,000 US. As of December, the family had raised $75,000 of a goal of $81,000. That still may not be enough. If it isn’t, the family still plans to go forward with the trip.

Jarrett’s suffering has been far from just corporeal. It may be hard for his family to comprehend the sensations his body experiences, but they can feel his anguish over the loss of a football career and attending university classes.

While visiting her brother, Brooklynn tries to be mindful about bringing up her studies at the U of R, where Jarrett was studying kinesiology when CRPS set in. Football was also a subject that could bring up painful feelings during the early days of Jarrett’s illness.

“He doesn’t get to do those things that a 22-year-old should do. He doesn’t get to do the things I get to do,” says Brooklynn while on the verge of crying.

Seck’s parents have had to watch their athletic son slowly become restricted to a bed.

The entire process of Jarrett’s illness has been an emotional ordeal for both Dave and his wife, Shelley. They can’t be strong all the time. There are still moments of weakness and frustration.

“To see him laying there … is hard,” says Shelley.

Even just getting Jarrett into the Wascana Rehabilitation Centre was a battle, and it was waged by his mother. The family was initially told that Jarrett would have to reside in a nursing home outside the city.

Shelley hit the phones. She called social workers, the health region’s patient advocacy services and even her MLA.

“They say loneliness kills people. My son’s 22 years old, he doesn’t need to be in a nursing home,” says Shelley.

Eventually, Jarrett was allowed to stay at the rehab centre.

Part of the reason Shelley wanted Jarrett to stay at Wascana was because of the access to physiotherapy, which he’ll be able to use if his treatment in Arkansas is successful in reducing his pain levels.

There is no guarantee the treatment will work. While at the centre, Jarrett will have two weeks to see if his body starts responding to the treatment. Dave is willing to try anything if it means easing his son’s suffering. Right now the goal is just to cut down his pain, even if only by half.

“We don’t want to give up on him right? He’s only 22,” says Dave.

Former Regina Thunder player Jarrett Seck, who suffers from Complex Regional Pain Syndrome (CRPS), speaks with his sister Brooklynn in his room at Wascana Rehabilitation Centre in Regina. He was diagnosed in 2016, but it has gotten worse and spread to three of his limbs and is extremely painful. TROY FLEECE / REGINA LEADER-POST

The 20-hour-plus drive down to Arkansas will not be easy. Jarrett can recall how horrible his 10-minute ambulance rides to the hospital were.

He’s been spending time getting mentally prepared for the treatments, which will be more intensive than the therapy he’s received in the past. To start, he’ll undergo chiropractic therapy. Then comes micromuscular therapy, which will involve electrical currents being introduced to his body through patches being put onto areas that have not been affected by CRPS yet.

“I’m hoping and praying, but I’m pretty confident that there’s some positive that’s going to come out of it,” says Jarrett.

The trip to Arkansas has given Jarrett something to fight for. A goal.

Jordon Dezotell can tell the upcoming trip has given his childhood friend something to look forward to. Dezotell describes it as the light at the end of Jarrett’s tunnel.

When spending time watching Monday Night Football with Jarrett in his room, Dezotell was at first hesitant to bring up topics such as going to the gym, an activity they used to do together.

That fear has slowly gone away. Dezotell says Jarrett still likes being kept up to date on what’s going on outside his room. Gradually, Dezotell has learned that Jarrett is still the same quiet, observant person he’s known since Grade 5.

“It’s unbelievable. I can’t even describe his strength,” says Dezotell.

Physically, Jarrett has only gotten worse. Emotionally and spiritually, his mother can see improvements. While on methadone, his family noticed changes in his personality. He was numb, and would hardly ever laugh.

Now that he’s off the methadone, Jarrett has his sense of humour back. Shelley laughs when thinking of the time she asked Jarrett to watch her purse, and he jokingly asked what could he possibly do if someone tried to take it?

In order to accompany Jarrett to Arkansas, Brooklynn will take a semester off of school.

She’s always looked at her older brother as someone she could look up to, a protector. Now the roles have been reversed. The two were always close growing up as the only siblings in their family. Now she’s gotten to see another side of her brother, who may not have cried in front of her in the past.

Jarrett can’t be happy and energetic all the time. The fact that he is able to muster it at all is still amazing to her.

“He’s not that strong person physically anymore, but mentally he’s so strong I don’t even know how to comprehend how he’s dealing with this,” says Brooklynn.

Jarrett’s body may never return to what it used to be, but attaining any improvement is better than nothing. Anything that will lessen his pain.

Jarrett Seck when he was still playing for the Regina Thunder. Seck developed a rare chronic condition called Complex Regional Pain Syndrome after being injured during a football game in September of 2015. (Photo courtesy Regina Thunder) REGWP

There is always the possibility that his condition could worsen. The CRPS could spread further in his body, and has been known to even reach people’s internal organs.

The Seck family is not focusing on the negatives. There is only one option, only one choice: to cut down Jarrett’s pain. Any avenue that gets him there is worth it.

“I don’t know if this is rock bottom or not, but I hope we can just go up from here,” says Brooklynn.

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