Minnesota forward Taylor Williamson blessed just to be on the ice
The symptoms persist.
Taylor Williamson never knows how she will feel when she wakes up in the morning, though it hasn't stopped her from suiting up this season for the University of Minnesota women's ice hockey team. A senior left wing for the second-ranked Gophers, Williamson is grateful for every shift, every practice, every moment with her teammates. That's what happens when you briefly lose something you love.
"I'm thankful and blessed," Williamson said before a recent practice at Minnesota's Ridder Arena. "I'm doing really well."
It's been more than a year since Williamson was diagnosed with myasthenia gravis (MG), a rare autoimmune neuromuscular disease that causes muscle weakness and fatigue. It's chronic, with no known cure, though manageable with medication. Classic symptoms include droopy eyelids and slurred speech.
A scary onslaught of symptoms during Minnesota's 2017-18 season opener left Williamson unable to speak, frightening her parents and prompting a trip to the university hospital emergency room. An on-call physician suspected she had MG. Three days later, further tests confirmed it.
Williamson missed more than three months before returning in mid-January 2018. Stronger by March, she regained her spot in the lineup. When the Gophers beat archrival and top-ranked Wisconsin 3-1 for the Western Collegiate Hockey Association championship, it was Williamson who tipped in the go-ahead goal.
A normal summer of conditioning preceded Williamson's return this season to a regular role. Shuttling among Minnesota's top three lines, Williamson totaled nine goals and 11 assists for 20 points, all career highs, to help the Gophers (30-5-1) earn an at-large bid to the NCAA tournament. Most important, she skated in all 36 games.
"How she has played in the majority of those games is impressive as well," Minnesota coach Brad Frost said.
"Here's a kid who wasn't sure she would ever play hockey again, and quite frankly, I didn't know she would, either, when she was first diagnosed with this," Frost said. "To see her come back as she did at the end of last year and provide a real spark for our team, and now be as consistent as she has been this year, is pretty incredible."
The Gophers host Princeton (20-7-5) on Saturday in an NCAA tournament quarterfinal, with the winner advancing to the Frozen Four in Hamden, Connecticut.
Medication and rest, plus physical therapy from an unlikely source -- an NHL player agent -- keep Williamson on the ice. Several weeks ago, she completed a blood infusion treatment to combat fatigue and minor facial-muscle weakness, her most persistent remaining symptoms.
"It makes my body feel good and strong and gives me some energy," Williamson said. "It's really cool to know modern medicine has been able to create so many routes that I can go down to help me feel the way I've been wanting to feel."
Granddaughter of Murray Williamson, a U.S. Hockey Hall of Famer and two-time U.S. Olympic coach, Williamson describes the disease's progression as routinely as a trip to the store.
Late in her sophomore season, Williamson noticed she had difficulty speaking late at night. Williamson dismissed it as student-athlete stress and fatigue. When it persisted on a postseason vacation to Arizona with six teammates -- a trip that should have been stress-free -- Williamson told her mother, Beth.
An MRI revealed an arachnoid cyst on her brain, a fluid-filled sac about the size of a fist. Such cysts are not cancerous and are treatable by draining the fluid, per the Johns Hopkins Medicine website. Less than 24 hours later, Williamson underwent emergency surgery.
April 5, 2017 is a day that changed my life forever. I can't thank my family, friends, and most importantly Jesus Christ for guiding me through this past year. Word can't describe how thankful I am to be where I am at today! pic.twitter.com/eo8eEvIqX6- Taylor Williamson (@twilly_7) April 5, 2018
That seemed to work. The symptoms abated for several months, and Williamson headed to Germany for summer study. Then they returned. This time, there were more of them. Difficulty talking. Muscle weakness. A droopy right eye. Problems eating and swallowing.
Sophie Skarzynski, Williamson's teammate and former roommate, went on that Arizona trip with Williamson and studied abroad that summer in Barcelona, Spain. Skarzynski and two teammates met up with Williamson in Italy. They quickly realized Williamson wasn't right.
"The symptoms by then were supposed to have dwindled away, but they seemed to have gotten totally worse," Skarzynski said. "She would get tired all the time. She couldn't speak starting at 6 or 7 p.m. It was really scary."
Things deteriorated further when Williamson returned to Minneapolis in July 2017 for preseason training. Her skating, her shot, everything was off. Her father, Dean, a center for the Gophers men's team in the late 1980s, took video of Taylor struggling with simple skills. By October, another symptom cropped up: double vision.
"If you could have seen her on the ice practicing with us -- and I mean this with all due respect because we love Taylor -- you would have said, 'What is that kid doing on the ice?'" Frost said. "If her snap shot is normally 60 mph, it couldn't have been more than 30 mph. Her stride was no more than 50 percent of what it is when it's full speed."
Frost debated whether to play her in the season opener against Merrimack. Appreciative of Williamson's work ethic and loyalty to the program, Frost put her in the lineup.
It was a disaster.
"I woke up that day really not feeling the greatest," Williamson said. "I said, let's see how the pregame skate goes. Then let's see how off-ice warm-ups go. I was feeling fine. Then all of a sudden, in that first period, it all came crashing down."
All the symptoms came on with a rush. Williamson couldn't talk, smile or swallow. Her right eye drooped. The blurred vision returned, and her arms and legs felt weak.
"They were all happening at the same time, which was really scary," Williamson said. "I'm a pretty tough person, so I tried to get through the period. At the end of the period we were back in the locker room, and our captain, Sydney Baldwin, came up to me and she just said, 'T, how are you doing?' And I looked at her and said, 'Not good.'"
Here's a kid who wasn't sure she would ever play hockey again, and quite frankly I didn't know she would, either, when she was first diagnosed with this. To see her come back as she did at the end of last year and provide a real spark for our team, and now be as consistent as she has been this year, is pretty incredible.Minnesota coach Brad Frost on Taylor Williamson
Baldwin told Frost, who alerted the Gophers medical staff. Williamson's parents, fearing she was having a stroke, took her to the emergency room. At 3 a.m., once an MRI and other tests ruled out anything neurological, a physician raised the possibility of MG. The Williamsons had never heard of it, so they researched it.
Doctors prescribed three medications, which helped, but Williamson struggled to regain her muscle flexibility and strength. "I was so weak that I couldn't put my hair in a ponytail because my arms couldn't raise above my head," she said. So she sought out Neil Sheehy, a family friend and NHL player agent with a side practice in neuromuscular therapy.
An attorney with an economics degree from Harvard, Sheehy played eight seasons in the NHL, mainly as an enforcer. As a player, he always searched for ways to extract more from his battered body. He studied the techniques of therapists who had treated him.
Armed with that knowledge, about 10 years ago he began treating friends, family and clients himself. "Even my family thought I was a little strange in the beginning," he said. Sheehy said he didn't charge for his services until gaining certification in neuromuscular therapy last June from Northwestern Health Sciences University in Bloomington, Minnesota.
Sheehy declined to describe his methods in detail, but clients such as Zach Parise and Ryan Suter of the Minnesota Wild say he's helped them. Williamson occasionally sought treatment during high school from Sheehy. This time, she considered Sheehy the person most likely to get her back on the ice.
"When she came in, she shuffled like somebody who has Parkinson's," Sheehy said. "She was kind of hunched over a little bit. She raised her hands up to her shoulders and goes, 'Look, I can't even raise my hands over my head.'
"To be quite honest, I was scared. She was coming to me, and I could see all of her hopes and dreams were on me, that I was going to help her. I had her sit down, and I said, 'I don't know if I can help you or not. All I can do is tell you what I know and not do something beyond what I know.'"
Sheehy said he massaged Williamson's muscles for more than an hour. When he finished, Williamson put her arms over her head, skipped down the hall, and did three burpees -- a push-up, then a jump in the air. Williamson hadn't done any of that since the diagnosis.
"I don't know a lot of people that would have risked to help such a broken individual," said Williamson, who still sees Sheehy regularly. "The fact we had that quick of an improvement after one session, to literally do a burpee with my hands above my head, was like the coolest thing. It made me really hopeful I could make a comeback at some point."
Williamson returned to the Gophers lineup on Jan. 13, 2018, against Vermont. In 14 games, she netted three goals and three assists, with the biggest goal in the WCHA final, redirecting an Olivia Knowles slap shot to help secure conference's automatic NCAA tournament berth. Six days later, Wisconsin eliminated the Gophers in the quarterfinals 4-0.
This season, Minnesota won the WCHA regular-season title and entered the conference tournament ranked first nationally before losing the final to the then-No. 2 Badgers, 3-1. Williamson would love to add a second national championship to the one she won as a freshman. But more than that, she feels blessed to finish her career on the ice.
"It's pretty crazy to see where I've been able to land, and the impact I've been able to make on the team this year has been so fun," she said. "This is a special team. I'm really excited to see what's in store for us."