What Is MCS?

Crusader's toughest fight

Allen leads Holy Cross football as he copes with debilitating illness

By Jackie MacMullan, Globe Staff, 9/18/2003

WORCESTER -- Before his legs stopped working, he was a linebacker. He was a little on the small side, even for a tiny school like Hanover College in Indiana, but what struck them all, when Dan Allen barreled across the line, was how active he was. He rushed the passer in a whirl of reckless energy, throwing himself at anyone who tried to advance the football.

"He was in on every play," said his wife, Laura, who was there from the beginning. "He was all over the field."

Years later, when Allen became a coach, he gathered his quarterbacks and in his calm, soothing voice, shared a secret with them.

"When I was a player," he said, "I wanted to rip your heads off."

Before his cruel, debilitating illness wrapped itself around him like a poisonous serpent, he ran his practices the way he played football. He was all over the field, straddling pads while his linemen slammed into him, throwing spirals while his receivers sprinted up the field.

He bought them Popsicles on days they worked hard and suspended them from games when they broke team rules. He told them that, next to his family, he loved football more than anything.

"He is the reason I came to Holy Cross," said receiver Ari Confesor.

Allen took over the Crusaders in 1996, and with no scholarships, wins were scarce. Sometimes, his players wondered how they'd ever win again, but then Allen's soft voice would crescendo in the losing locker room, and the players, heads bowed, would straighten up as their coach plucked the one speck of positive out of a heap of disappointment and convinced them to believe again, at least for one more day.

One of those days was Sept. 16, 2000, long before the dizziness and nausea and muscle weakness and exhaustion settled in. Holy Cross beat favored Harvard, 27-25, and Allen began whirling around the sideline.

He was tapping his feet, leaping up and down, flailing his arms, pumping his fist. He was dancing. He danced and danced, his eyes aglow with happiness, and some of the players, in spite of themselves, found themselves dancing right along with him.

Now do you understand why this is so hard?

Coach Allen can't dance anymore. He can't kick a football, write a letter, make himself a sandwich, brush his daughter's hair.

He is in a wheelchair. He can't walk. His right arm is lifeless. He must rely on his staff and his family to drive him, feed him, bathe him. He has trouble speaking. Someone must hold a straw up to his lips so he can drink. He is trapped inside a body that has completely betrayed him, for reasons he still does not fully comprehend.It has been this way for almost 18 months. What began as a headache and a toe that went mysteriously limp has deteriorated into a devastating diagnosis of Multiple Chemical Sensitivity, a condition caused by exposure to toxic chemicals and other irritants in the environment, causing fatigue, muscle and joint pains, short-term memory loss, headaches, and neurological problems. His sensitivity is so acute, a dentist extracted 16 fillings from Allen's mouth, so the mercury wouldn't affect his health.

Allen believes he has pinpointed the chemical exposure that triggered his symptoms, but he has been told by legal advisers not to reveal that information. Litigation, it appears, is inevitable.

In the meantime, Allen, 47, tries to move on, to motivate the team he loves and remain a full-time presence, without the benefit of his body.

"It has been a year and a half of pure hell," Allen said. "I have watched myself deteriorate to the point where I can't walk. Here I am, supposed to be this macho football coach. I was invincible, right? Nothing was going to happen to me.

"And the scary thing is, it could happen to anybody. Unfortunately, a lot of people in the field of medicine don't look at this as an illness."

Illness hits home

A host of mainstream physicians refuse to acknowledge MCS as a legitimate diagnosis, claiming it has never been clearly defined, lacks proven diagnostic testing, and has not been scientifically validated. Skeptics say while MCS patients exhibit real symptoms, most of them suffer from a psychosomatic disorder brought on by stress.

Holy Cross offensive line coach Mike Pedone, who played for Allen at BU, would like to meet these doctors. He wishes he could have dragged them to the Crusaders' season opener two weeks ago at Lehigh University.

"Then you tell me who is imagining what," he said.

Ten minutes before game time, Allen, this man who once hunted down quarterbacks and danced on the sidelines of Harvard Stadium, sat motionless as Holy Cross strength coach Jeff Oliver cradled him in his arms like a small child and carried him up the bleachers to the press box, Allen's listless limbs often banging against the fans on the aisle.

"The whole time I'm carrying him," Oliver said, "he's saying to people, `Sorry. Hope I didn´t bump you. Jeff, please, watch out for my feet.´ "

Dan Allen is a proud man. He has fought to maintain his dignity and his privacy since he became ill. But sometimes, dignity cannot be a priority.

"It wasn't an easy thing," Allen said. "My original plan was to stay by the locker room. But, as the game got closer, I said, `What the hell. I´ll wheel out to the sideline.´ "

As he sat there, watching his team warm up without him, he realized he needed to be more closely connected to his players. So he allowed Oliver to carry him up the aluminum steps, as the Lehigh students predictably gawked, whispered, and pointed.

"But I didn't see them," Allen said. "I was looking at the white light. Tunnel vision."

He must not lose focus. The goal is to get well, to walk again, to live again. Please don't tell him this is all in his head. How dare those doctors. Forget about football, for a minute. Do they understand how painful it is to see the hurt and uncertainty in the eyes of his wife and children? Laura Allen has been with him 27 years now, since they were kids themselves, and together they have survived the difficult, nomadic life of a coach.

Their children are wounded, confused, and angry. Mark is a senior at Westboro High, a top receiver on the football team. He should be chasing down spirals with his dad in the backyard, not lifting his dad up and down the stairs. Taylor is 13, the inquisitive one, who should be peppering his dad with questions about basketball season, not grilling him for details on his medical progress. Danielle, at 11, the youngest, who keeps it all inside, should be giggling with her friends, not sobbing with a counselor.

They are good kids. Their grades shouldn't be slipping. Their dad shouldn't be cursed with so vicious a condition, which has no known cure.

"You have to understand," Laura Allen said. "Their dad was -- is -- their idol. And things have changed so dramatically."

She has learned to absorb their anger, to keep their routine normal, even asking the Holy Cross coaches to come by the house, first thing, to take Allen to work.

"I couldn't have the boys carrying their dad downstairs every morning, then going to school upset," she said.

When the Allens exhausted attempts to get answers from the traditional medical community, they turned to holistic healers. They have been heartened by the results, but their insurance does not cover most of the treatments.

They have decimated their life savings. They have taken out a second mortgage. Dan is improving slowly, but the money is going quickly.

Last fall, when Allen was forced to take a leave of absence, he decided to keep his condition private. His silence led to speculation he was suffering from cancer, AIDS, Lou Gehrig's disease. Some still believe that.

"When people see me, they draw conclusions," Allen said. "I worry about my kids and what they are hearing."

He wants to gather them close, hold them tight, and tell them not to be afraid, because everything is going to be fine. But he can't. He can't hold them at all, can't even get his damned right arm to lift out of his lap.

He can't tell his children not to be frightened when he is so frightened himself.

"I don't know what's in the future," he said. "I'm getting stronger. My body is healing. But I don't know. I don't know.

"All I know is I'm a competitor. If the good Lord is going to take me, I'm going down swinging."

Differing opinions

The party was a surprise. Pedone, Oliver, and former Holy Cross athletic director Ron Perry, tired of feeling helpless, arranged a small, private fund-raiser. Word spread quickly, and the guest list grew from dozens to hundreds, with a large contingent from Boston University, where Allen led the Terriers to an undefeated season in 1993.

It was an emotional night. Allen cringed when they held up a football with his autograph signed long before his illness to auction. Really now, who would want that? The BU table, loaded with alumni from the best team it ever had, pushed the price higher and higher, as the cheers from the audience grew defeaning. The final bid topped out at $3,500.

They raised almost $80,000 to help defray the coach's mounting medical costs.

Allen, looking frail and weak, addressed his friends, and thanked them for their kindness. He introduced them to Kate May, the kinesiologist, who, he said, had started him on the path to recovery.

"Without her," he said, "I wouldn't be here."

When Allen first developed headaches and bouts of dizziness, Laura, a registered nurse, took him to a neurologist. The tests were inconclusive.

When he lost all feeling in his left toe, he solicited additional medical opinions. The problem spread to his foot, then, over time, to his leg.

Laura's frustration grew as Allen's symptoms mounted.

"Every time we went to the mainstream doctors," she said, "they told us, 'Let's wait and see.' "

Wait and see what? How quickly he'd fail? Laura had noticed May's card in her chiropractor's office. She made an appointment. May's initial findings were ominous.

"All I had to do was hold my hand over his liver, and I could feel the heat," she said. "It was toxic."

For the past year, May has combined colon hydrotherapy with lymphatic drainage and massage therapy. In Allen's case, she has worked in conjunction with other health care providers, including two physicians, who have administered vaccines to help regenerate healthy cells.

"All I can tell you was when Dan came to see Kate, his liver was in big trouble," Laura said. "If we hadn't done these treatments, he wouldn't be with us. Of course, if you said that to the mainstream doctors, they'd just roll their eyes."

Dr. Tom Winters, chief of occupational medicine at New England Baptist Hospital, did just that. "If you talked to 100 doctors, 95 of them would tell you [colon hydrotherapy] is a crock," he said. "I don't think it does much of anything, but if [Allen] thinks it does, I'm not going to tell him differently."

Winters described himself as a "tweener," a doctor who recognizes some patients develop MCS from exposure to toxic chemicals. Although he has never examined Allen, Winter said his symptoms suggest "a severe case of exposure to something."

"But, to be honest, I think half the patients diagnosed with MCS have psychologically derived [symptoms]," he said.

Dr. Marcie Wolinsky-Friedland, who has been treating Allen for about three months, said Winters's position is not unusual.

"I would have said the same thing five years ago, too," she said. "It's a learning process. For me, it happened over time, a subtle shift because of dissatisfaction with the lack of improvement of some of my patients.

"Part of the problem is the term MCS. But you can also call what Dan has an environmental illness, similiar to a `sick building´ syndrome. No one discounts that. Anyone who examined [Allen] would recognize his degenerative neurological condition."

Allen no longer worries what people think. His diet consists of smoothies, fruits, vegetables, and mostly organic food. He sees May at least three mornings a week.

Holy Cross athletic director Dick Regan said he did not ask Allen to take another leave because, "We chose to focus on the things he could do, rather than the ones he couldn't. We know it's important for him to coach. I don't believe it's been detrimental to the team." Asked what the future holds for Allen, whose contract is up after next season, Regan answered, "I have no plans to change coaches. Hopefully, Dan will make a full recovery."

Allen worries about the financial repercussions of his illness. Will he have a job next summer? How will he pay his medical bills? May has reassured him.

"Even if the money runs out," she said, "I'll still be here. I want Dan to get well. I've never seen anyone who wants to heal more."

Part of Allen's recovery involves limiting his exposure to toxins. When Mark's girlfriend stopped by, Laura politely told her not to come inside, because she was wearing body spray. When the team travels, Allen does not ride the bus, to avoid noxious fumes. Allen's physician also worries about the pesticides and chemicals used to maintain the football field.

"I have significant concerns about that," Wolinsky-Friedland said. "But he's a football coach. It's his job to be out there."

Laura believes Allen's decision to continue coaching has enhanced, not hindered, his recovery. Football has always been a part of him, since they were 14-year-old high school sweethearts in Cincinnati, and he told her his idol was Dick Butkus. Dan has always been a physically strong person. Now, it's Laura's turn to be strong.

"She has been a rock for him," May said. "I don't know how she does it."

Laura isn't so brave every day. Some mornings, the unfairness of it all overwhelms her.

"What I miss most," she said, "is him putting his arms around me."

Coach on the job

He was in the bathroom with Oliver, reviewing his speech for the team dinner the night before the season opener, when Allen, sitting in his wheelchair, spontaneously began imitating R2-D2, the tiny android from Star Wars who randomly wheeled himself around in circles.

"He's found a way to laugh at himself," Oliver said. "He's found a way to stay positive."

As Allen addressed his team, he rose, with help, out of his wheelchair. He stood there, for three minutes, and told his players, picked to finish sixth in an eight-team league, that people had underestimated them. He told them, as his legs shook uncontrollably, both from nervousness and the effort it required to stand, the doubters had underestimated him as well.

Most of his players cried. All of them gave him a standing ovation.

"A lot of good it did us," Allen said. "We still lost the game the next day."

The 2003 season is only two games old, but Allen recognizes the need to get beyond his own heartbreaking story.

"I worry there's too much emotion," he said. "At some point, we have to say, `OK, thanks for your concern, now let´s go win some football games.´ "

Allen doesn't kid himself. It's not the same. But it's funny how things have taken on a certain normalcy. When he speaks, his players come closer, listen harder. They erected a wooden platform at the 50-yard line of Fitton Field, so, sitting in his chair, he can be in the thick of the action.

"He's done everything a head coach should do -- except ride the bus," said defensive back Ben Koller. "He's out there every single day."

Last week, Allen stood for five minutes on his own. His left hand is functioning more freely. He can move both feet. He held tryouts for Taylor's travel basketball team last Thursday and plans to coach it as well as Holy Cross.

"We've said 100 times, `Why us?´ " Allen said. "I really believe some things happen for a reason. Maybe because I´m a public figure, my role is to get information out there on MCS."

The players say Allen is inspiring. They say they are working harder than ever. Pedone says he will never look at his job the same again.

"I used to worry about getting fired," Pedone admitted. "I use to think, `Are we winning enough games? Are we OK?´ No more. If you get fired, it doesn´t mean you´ve failed. Nothing going on around here has anything to do with failure."

Last Saturday, after Georgetown scored a touchdown against Holy Cross just before halftime to tie the score at 14 in the Crusaders' home opener, Allen instructed his coaches to send his key offensive players over to his platform. He spoke to them briefly; their solemn eyes locked into his. Thirty-seven seconds later, quarterback John O'Neill threw a 47-yard touchdown pass to Sean Gruber. Holy Cross went on to win, 42-34.

"I always told my players football is 90 percent mental," Allen said. "I'm coaching from the neck up. That's how I did it before. That's how I'm doing it now."

On the sideline last Saturday, Allen did not react when that touchdown was scored.

But inside, you all can bet he was tapping his feet, jumping up and down, flailing his arms, pumping his fist. Inside, you can bet he was dancing.

Dan Allen believes the day will come when he will dance again. He will dance and dance, his eyes aglow, and, in spite of yourselves, you will dance with him.

© Copyright 2003 Globe Newspaper Company.



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