HARRISBURG, Pa. (AP) - Days before Craig Snell’s stroke, he and his wife Kerry grilled outside in the kind of warm winter weather that hints at the promise of summer.
Their two children wore shorts and played with snow piles at their Boiling Springs home, and Kerry looked forward to camping and going out on a boat that Craig had fixed up.
“I feel like everything is perfect,” she told him.
“He said he felt the same way,” Kerry recalls.
That idyllic summer never came.
Craig, a man loved ones described as constantly in motion, hasn’t been able to speak or regularly move his limbs since he suffered a stroke on March 9.
Since then, the 43-year-old, stay-at-home dad - whose resourcefulness and expert hands regularly fixed cars, made custom birthday piñatas, and created an elaborate stone patio at their 1960s ranch-style home - has regained some head movement but communicates through his eyes, facial expressions and nods.
Kerry tells her husband of 18 years that his “insanely creative mind” can help him recover.
“The people that I’ve read about that recover, they always say like they moved a finger, and then they knew they could move everything else. He hasn’t done any of that, but he has learned how to move his head and make facial expressions,” Kerry said. He has regained trunk control, “so the therapists are really hopeful that it’s actually coming back, and (that) it’s coming back from his core out.”
THE STROKE
Craig was teaching a neighbor’s 13-year-old daughter how to snowboard March 9 at Roundtop Mountain Resort.
As he and Kerry were packing the car, Craig fell, vomited and began seizing, gasping for air. The 13-year-old ran for help. Roundtop’s ski patrol responded, and Craig was airlifted to York Hospital.
At the hospital, Kerry said, Craig was completely “locked in.” He couldn’t move or communicate. His eyes had become little “pin picks” that refused to focus.
Kerry said it took a lot of questioning to figure out how he had such a stroke - “It’s just very rare and very odd.”
Dr. Kevin Cockroft, a neurosurgeon at Penn State Health Milton S. Hershey Medical Center, said locked-in syndrome can be prompted by a stroke in the brain stem, or, less commonly, a tumor or an inflammatory process in the brain. But it’s a rare condition - patients with locked-in syndrome represent less than 1 percent of all strokes.
Locked-in syndrome also is known as cerebromedullospinal disconnection, Cockroft said, “Meaning that the cerebrum, the upper part of the brain, which deals with thinking and communication and voluntary movement, is disconnected from the actual parts of the brain that would lead you to be able to move … and breathe.”
With locked-in syndrome, he said “the patient is left with an inability to move their limbs or face or breathe on their own, but yet is still awake and can usually communicate with eye movements.”
Sometimes locked-in syndrome is mistaken for a coma, but there also are “other disorders that can look like locked-in syndrome but are not,” Cockroft said.
Following a surgery that removed blockage and put a stent in his ruptured artery, Kerry said Craig could communicate with his eyes, looking up for “yes” and down for “no.”
“And he can kind of roll his eyes at you, too,” Kerry said, laughing since Craig did that well before the stroke.
Throughout his time in York Hospital and Penn State Hershey Rehabilitation Hospital, Kerry spent hundreds of hours by Craig’s side, interpreting his signals, doing therapy with him and learning how to care for him. By mid-April he had regained some “tiny movements.”
“You just don’t know. Some people come out of it and some people don’t. And it takes a really long time. … Even the doctors don’t know,” Kerry said. “It’s just really hard because he’s a very, very, very active person. He doesn’t sit down. He doesn’t watch TV. He’s always building something or doing something.”
“I just don’t want to see him stuck like that. That’s not how he lives,” Kerry said through tears. “I know it’s frustrating for him.”
The mornings were the hardest, Kerry said.
“I think he dreams the same things I dream,” said during an April interview. “And he wakes up and he’s trapped in his own body all over again.”
She spoke through sobs.
“I think he’s most down in the morning. We usually cry together in the morning for a little bit, and I get him up for therapy, and the rest of the day usually goes much better. I just want him to be able to enjoy a portion of our life again. I loved our life before. It was, it was perfect.”
Craig worked hard at therapy, not wanting to stop even when it was painful. In rehab, when he made a sound while yawning or crying, Kerry would work with him on elongating it and stretching out the sound to help his brain remember. When he made progress, like the time he was able to pull his head forward and put it back against a back rest, he repeated it, over and over, for 40 minutes.
He was afraid he would forget.
“I know he’s trying to come back to us,” Kerry said.
THE LONG ROAD
Kerry promised her husband that she wouldn’t put him in a nursing home. She brought him home on May 25, wheeling him up a solid, wooden wheelchair ramp a friend built from the driveway to their front door.
Their living room has been repurposed to be Craig’s bedroom. At either end of the couch that she sleeps on every night to be near her husband sits a wheelchair.
Across from the couch, Craig lies in a hospital bed looking up. A homemade sign says “Welcome Home.”
Through all this, friends, family and colleagues helped Kerry stay by Craig’s side and support her children.
Fellow teachers at Susquehanna Township High School, where Kerry teaches Spanish, collectively donated enough paid time off to keep her home and paid until the new school year begins in August.
Others donated to an online fundraiser that helped Kerry buy a van with a lift.
A woman down the street regularly sends her son to mow the lawn, and people took turns bringing the Snells meals.
“I really appreciated everything they did,” Kerry said. Many people did things “that I didn’t even ask them to do. It makes it so much easier.”
After 20 years together, Kerry has become Craig’s around-the-clock nurse. She said she’s much more confident in taking care of him because of the time her colleagues donated, which allowed her to be by Craig’s side at rehab and learn how to care for him.
Kerry schedules her day around Craig’s care, giving him medication early in the morning before waking up the children. She bathes him and turns his body. Between getting the kids off to camp and therapy sessions, Kerry feeds him five times a day through a tube.
She wakes in the middle of the night to check on him or re-position him.
Physical, speech and occupational therapists come to the house a few times a week. While the therapy isn’t as intense as when he was in rehab, Kerry said, and despite all of the warnings that patients usually plateau at some point, Craig continues to improve.
Kerry’s exhausted eyes brighten with laughter and then tear up as she describes Craig’s progress and her frustrations. She misses talking to him. She misses their life as they were before.
“I just hope that there’s something out there we haven’t tried yet that’s going to make it better,” Kerry said. “Just because we can’t do all the things we used to do like biking and kayaking and camping, and all the stuff he would do with the kids is what I miss.”
But everyone is happier now that he’s home. His 7-year-old son Bowie and 9-year-old daughter Evelyn climb into the hospital bed with Craig, singing to their dad and talking to him.
“Bowie fell asleep with him the other night,” Kerry said.
Craig has more reflexes in his limbs, and, at times, can move his legs on command. Sometimes, when he exercises his arms, it feels like he’s helping, and that’s encouraging, Kerry said.
Craig also can mouth words now, sometimes with a bit “little bit of a whisper voice.” Some of the first, Kerry said, were curse words.
“Been silent for three months, the first thing you want to do is curse, I think,” she said, laughing.
Last Wednesday, Kerry was concerned about Craig, and brought out a letter board to help him spell what he wanted to say. She watched his face as she listed off letters. He nodded first at an “s,” then again an “h.”
“You’re going to tell me to shut up?” Kerry asked, and Craig nodded and laughed - breaking the tension and, to all appearances, telling his wife “just stop it. I’m fine.”
Craig, a man who’s spent the last three and a half months unable even to scratch his own toe, hasn’t lost his sense of humor. He convinced his wife to shave his hair into a mohawk, and has put an electric wheelchair into drive if Kerry doesn’t remember to disengage it.
“He just moves it a little and laughs,” she said.
An elderly woman who used to take Craig to Catechism classes when he was a kid brings the family fresh produce once a week.
Craig used to stop by and help her with projects. Now, when she visits, she tells him: “I have things for you to move when you’re better.”
Kerry doesn’t know exactly when that will be, but she’s behind her husband as he chips away at his ultimate challenge - using his mind, and his knack for figuring out how things work and turning the broken into new, to gradually rebuild himself.
Since the stroke, every head nod, facial expression, leg movement and reflex has counted as progress toward the recovery he and Kerry earnestly believe will happen.
“He says he’s going to walk by next summer.”
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Information from: Pennlive.com, https://www.pennlive.com
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