Drew Miller has skillfully viewed the monitor of a television camera his entire life. As an Emmy Award-winning cameraman, the images he transmitted included nuances of a fleet running back hitting the slightest space on the offensive line before it closed. He would show us backhanded stops deep in the hole between third and short, and then an airborne, whirling shortstop throwing out a runner by a step.
Later in his life, the action became direct feeds from the U.S. Senate floor where names such as Bush, Clinton and Obama were viewed by Drew before we’d see them on C-Span. Through the camera’s lens, he showed us the excitement and the importance of the artist viewing life, sometimes history.
Now, in his comfortable Columbia home, the camera stares back at this 44-year-old for a change. With the aid of its technology, we learn of Drew’s life now—his nuances, his emotions, his loves and his still ongoing work for the Senate.
Yet there’s something about Drew to be known. He cannot walk; his articulation is often difficult to discern. He can no longer bathe himself and he needs help just to turn over in bed.
When Drew went in for a routine medical checkup two years ago, his physician raved about his health and basically told him he’d see him in a year. Blood work checked out, breathing was great, blood pressure perfect.
So why would he worry if weeks later he noticed he had the slightest bit of difficulty opening a bottle of water?
Should he care that when he opened the gas cap to his car it seemed a little more resistant than normal?
After all, he’d been tired before, and perhaps felt a little weakness before. One doesn’t play baseball at first base most of his life, and not get dinged here and there.
Then, however, came a twitch in his left hand.
That was for Drew the tipping point.
He’d call his physician, who recommended a neurologist. Blood work, check. MRI, check. It was the EMG, the electromyogram, where the checks stopped. Drew’s test was negative. Something was wrong with the electrical activity of his muscles.
Drew was sent to Johns Hopkins Hospital. There, he heard the words that would change his life. He heard his mother let out an unforgettable gasp.
ALS, the family was told, Lou Gehrig’s disease.
“I was told I had a terminal disease,” he said.
Drew had his former wife, Randi, and his parents there with him. ALS is short for amyotrophic lateral sclerosis, a neurodegenerative disease. According to the ALS Association, the word comes from the Greek. “A” which means “no” or “negative.” “Myo” means “muscle” and “trophic” means “nourishment.”
When a muscle has no nourishment, it atrophies.
Drew stares again into the box to “type” out a message. That box is called a Dynavox system. It consists of two devices. The system’s top is called vmax. It is a touch screen computer. The bottom part is the eyemax, which is a tracking device that tracks the movement of Drew’s pupils. He can type, send e-mails, friend you on Facebook, search the Internet without the use of his hands. The Dynavox can even control his television, DVR, answer the phone, provide him with his iTunes and even let him Skype.
On a sunny Thursday afternoon in Columbia, he is surrounded by love, pure and simple love. His parents, sister, one of his daughters, his home health aide and two close friends are there. It’s not unusual for friends to stop by, bring food and drink, but mostly come to be with Drew.
“One of the most difficult things that I have had to deal with throughout my journey is seeing how hard this has been on my family,” he would later communicate. “I had a very difficult time telling my parents about the possibility of having ALS.
“It was in February of 2010 during one of the blizzards that year,” he continued. “My neurologist told me that he wanted to refer me to Johns Hopkins because he suspected I had motor neuron disease. I will never forget that snowy Friday afternoon. As I drove home through the snow, all I could think about was, how could I tell my family? My wife and I were separated at the time. We have remained close even though we are no longer married. I called her on the phone. I was devastated. Then came the blizzard. I was locked in the house with more than two feet of snow outside. I felt trapped. It took me a day to get up the courage to call my sister and two days to call my parents. I was stuck inside for three days after being told that I might have a fatal disease. It was probably the most difficult three days of my journey, even more difficult than the day I was told that I did indeed have ALS.”
Still, Drew says he is a “happy person.”
Not lost to him is the irony of his being a longtime first baseman, that he and Lou Gehrig have some things in common.
“My body might be deteriorating, and physically some things may not be easy for me,” Drew writes, “but I look at it this way. You can choose to celebrate the things that you can do or be upset and harp on the things that you can’t do. I choose to celebrate.”
Celebrate is exactly what Drew and about 750 of his closest friends chose to do a couple of weeks ago at Camden Yards for Drew Miller Night.
There, dressed in the black and orange, Drew had a private meeting with Orioles skipper Buck Showalter and then took in the ballgame. The funds raised at events such as this go directly to Drew, so that he can afford the round-the-clock care and treatments he needs. One thing Drew Miller Night proved was the deep connection of joy the game of baseball plays in his life. His basement is filled with press credentials collected over the years alongside autographed bats, hats and balls.
His favorite movie? “Field of Dreams,” of course.
He is an Orioles Fantasy Camp alum and has played in four Fantasy Camp related games at Cooperstown, N.Y. He played on Milford Mill High School’s 1984 state championship team. He’s a 1989 graduate of the University of Maryland’s school of radio, TV and film. Drew started his career as a WJZ-TV sports department intern, editing highlights and sometimes producing live shots from the ballpark.
After graduating, he joined the Home Team Sports cable team, where he was the cameraman for some 81 Orioles home games and a large number of other sporting events. He is, even with his physical obstacles, the broadcast manager for the U.S. Senate. What happens in the Senate studio goes through him. He has an eye on everything going on in his job. During the night in his honor at Camden Yards, many of the people he supervises came to join him.
“I work closely with the press secretaries,” he says. “I handle all of the scheduling.” His work takes about three to four hours a day, and he supervises 35 people.
Drew continued his freelance work over the years covering professional sports, including Super Bowls, World Series and the NBA all star game while working as production manager for the U.S. Senate Recording Studio.
Two of his closest friends were there last Thursday, Glenn Babcock and Mitchell Caplan. Both have been instrumental in his night at Camden Yards.
Mitch, Drew’s longtime friend, is spearheading a wristband campaign with the words “Drew Miller Strike Out ALS” on the wristband. They are available by sending a stamped self-addressed envelope to Drew Miller, Strike Out ALS, 841 E. Fort Ave., Box 315, Baltimore, Md. 21230.
When talk of baseball, the Super Bowl, NASCAR, the U.S. Open and even ice hockey was finished for the moment, a quiet room listened as Drew told his story. He would tell this story even on Capitol Hill to increase awareness and erase doubt in anyone’s mind that federal dollars were more important than ever to help find a cure. He said to staff members of the U.S. Senate, “The fact is, I’m preparing to die.” In a face-to-face meeting with Sen. Patrick Leahy (D-Vt.), his story brought the elected official to tears.
He met with Senate and House staff members from Maryland, including representatives of Sens. Ben Cardin and Barbara Mikulski and Reps. Elijah Cummings (D-7th) and John Sarbanes (D-3rd).
He was on Capitol Hill last month for 2011 ALS Advocacy Day. “I was there,” he said, “to bring awareness to the disease and to advocate for continued funding for ALS research.”
Drew has been given a two- to five-year life expectancy, according to his family.
A year ago, he said he was walking and doing everything himself. Now, he starts to cry, an emotional sound that comes from the place where the soul and the heart connect. Its sound is something that can be touched and felt as it belies the sunny, airy room. His aide, Flo Chapman, massages his neck and hugs him.
He said that it was difficult for him to give up the use of his car and that, as late as last November, he was still driving himself to physical therapy.
Ellwood Miller, his dad and a retired Baltimore County art teacher, said that Drew’s condition “hits me every day.”
Vail, his mom, completed her husband’s sentence, “like a nightmare.” His father adds, “I looked at the future, and I realized we’ll never have a catch again.”
At that moment, Ellwood goes over and hugs his crying son. He said that everyone tries to soften this blow with humor.
It seems that through all of this Drew has become something of a speed racer in his electric wheelchair out on their street. The curious neighborhood kids want either a ride or to drive the wheelchair. Ellwood says that his son also loves to laugh and especially likes the Larry David show “Curb Your Enthusiasm.”
It’s his dear mom Vail who recounts the days in February 2010 when she first learned of her son’s condition.
“Drew found out on Feb. 9, 2010. He was told by his neurologist that he had a motor nerve disease. He looked it up on the computer and he knew it was ALS. These were the days of the blizzard. He was stuck in the house with this knowledge. He told his sister on Feb. 10. Then on Feb. 12 he called me and said, ‘Get Daddy on the phone. I need to talk to both of you.’ He told us that he thought he had ALS.”
He would find out officially on March 1, according to Vail.
“There has not been a good day since,” says Vail. “I think about Drew constantly as soon as my eyes open in the morning and it’s the last thing I think about at night.”
Vail deals with Drew’s illness by trying to make his life as easy as possible. What keeps her going is knowing that her son has accomplished more in his 44 years of life than most people who live to be twice his age. It’s not just professional accomplishment, she said, it’s also to see the wonderful way he fathers his daughters, and to see the friends, the almost countless numbers of friends, she calls Drew’s biggest “wealth.”
“He feels trapped in his own body,” she says.
Vail added that his energy and will almost seem like it will burst him out of the illness.
A good day for Vail?
“A good day? I don’t know,” she says.
Tracey Dermer, his sister, is almost calm, teary-eyed but philosophical about her brother.
“He’s an inspiration for all of us,” she said. “He’s a hero.”
Some people, she said while lovingly looking at her brother, would have given up by now. He just keeps fighting and living.
Drew’s two daughters are the loves of his life. Chelsea is a Towson sophomore majoring in speech pathology. Jessica is a junior at Atholton Senior High School.
“It’s really hard,” said Chelsea, who was in the room with her father during the interview. “I always thought something like this isn’t supposed to happen. I was in denial. We were all hoping this was Lyme disease. I try to be patient and value the time I have,” she says. “I’ve always been close to my dad, so I spend a lot of quality time.”
Flo, his daytime caregiver, says of Drew, “I’m here to comfort him. But sometimes I feel he gives me more care.”
His inner circle of friends, including Mitchell, Glenn and Mel Sykes, are part of what is quickly being known as the “Drew Crew.” It was just a year ago that Drew and Glenn traveled cross-country to see the Orioles take on the Angels in Anaheim, Calif. They were given a tour of the Fox Sports studios.
When Drew watches a sports program, he still notices the angles, the nuances and the shots that most of the rest of us would never see.
It was Glenn, who is part of the Orioles’ volunteer Designated Hitter group, who helped coordinate Drew Miller Night at the Yard.
If there’s any way to wrap up all of this in some sort of lesson, or to try to find some meaning to Drew and his illness, that meaning would come from Drew.
Back to the irony. The first baseman in the adult Ponce De Leon Baseball League, the member of Orioles Fantasy Camp, and the alum of the Milford Mill state champions gets teary-eyed again when he looks for something to sum up his life.
Through the Dynavox comes Lou Gehrig again, appropriately so: “Today I consider myself the luckiest man on the face of this earth.”
On a Thursday afternoon in early June, in a Columbia home, those who were in that room were the lucky ones.
Drew’s Capitol Hill Testimony
In May 2011, Drew Miller went to Capitol Hill as part of 2011 ALS Advocacy Day to read — with the help of his Dynavox machine — the following statement to leading Sen. Patrick Leahy (D-Vt.) and representatives of Sens. Ben Cardin (D-Md.), Barbara Mikulski (D-Md.) and Rep. Elijah Cummings (D-Md.). Congress has proposed cutting funding for ALS research.
My name is Drew Miller and I have ALS. I have worked for the Senate Recording Studio for more than 21 years. I was diagnosed on March 1st 2010. My journey began in December of 2009. I was a healthy 42-year-old father of two girls. I had my yearly physical. My doctor actually told me that I had not looked that good in years. My blood work looked great and I felt great. My doctor said, ‘Drew, keep up the good work and I will see you in a year.’
Two weeks later, I noticed that I had trouble opening a bottle of water here at work. I really didn’t think much of it. A few weeks passed and I noticed I had some difficulty opening my gas cap. A few weeks later I then noticed a little twitching on my left hand.
I am left-handed and thought maybe it was time to give my doctor a call. My doctor referred me to a local neurologist in my hometown of Columbia, Md. The neurologist performed a clinical examination and ordered a series of MRIs. The MRIs came back normal. He then ordered a series of blood tests. That, too, was normal. He then performed an EMG test, which consists of a nerve conduction test.
This test measures the electrical activity in my muscles. After that test, my doctor told me he was concerned with the results. Again, physically I felt fine with the exception of the little bit of weakness in my left hand. My doctor told me he wanted me to see a doctor at Johns Hopkins who specialized in motor neuron disease. I asked him what that was.
He said, ‘Drew, that is ALS or Lou Gehrig’s disease.’ I thought to myself, how could this be? Just weeks ago, I was told I was in perfect health!
Since being diagnosed 14 months ago I have lost my ability to walk, talk, feed myself, hold things in my hands. I can no longer bathe myself or roll over in bed without assistance. I need round-the-clock care. I have seen countless numbers of doctors, physical therapists, occupational therapists, speech therapists and I am still told there is no cure. They tell me, “We want to make you as comfortable as possible.”
I have wonderful family, friends and colleagues. I am fighting this disease with all my might. I have an awful lot to live for. two beautiful teenage daughters, two wonderful parents, a very special sister and brother-in-law, nieces, a nephew and caregivers who I love. But the fact is I am preparing to die.
There is no known cure and no long-term treatment for ALS. We cannot cut funding for ALS research.