You see the van pull up to the blacktop and witness what it takes to get Pete Frates from the inside of the specialized vehicle onto the ground in this corner of the Boston College campus, watch as his reclined wheelchair is guided from the van’s extra-wide door and toward a popup tent erected as shade from the glare of a steamy summer afternoon.
You think for a moment what it must be like to be Pete Frates, to be seven years into a battle against one of the cruelest diagnoses the medical world can deliver, to be rendered physically helpless yet mentally acute by ALS, the three-letter acronym for the condition more accurately known as amyotrophic lateral sclerosis, or more commonly known as Lou Gehrig’s disease. You think how unfair it would all feel, how nonsensical it would seem to rob a once-vibrant athletic marvel of his ability to move, and you would, if you’re being honest with yourself, say a silent prayer of gratitude it wasn’t you in that chair.
But then you remember the reason you are here, and you turn your attention to the people gathered around Pete Frates and his family, and you hear as their words remind you why they have come together on a campus they consider a second home. You feel the love that is everywhere. You hear it in the official words of BC athletic director Martin Jarmond, here to dedicate a new cutting-edge baseball/softball building in Pete Frates’s name, and in the heartfelt ones from Frates’s parents, John and Nancy, all but overwhelmed at what their son’s (and their own) alma mater has done.
You see it in the tender touch of Frates’s wife, Julie, and their 4-year-old daughter, Lucy, unable yet to quite comprehend what it will mean to have such a permanent tribute to the man they love, but so grateful to be here with him as it all becomes real. You learn about it from a mother who tells you how Pete’s older sister immediately retired and moved back home when her brother’s diagnosis came through and about a younger brother who dropped a nascent career of his own, broke a brand-new lease, and spent the next 2½ years as his brother’s primary caregiver.
You take that love and all it represents, and you find a new way to think about what it must be like to be Pete Frates.
You think about what it must be like to have inspired a campus, a nation, and the world with your Ice Bucket Challenge (the viral sensation that raised more than $220 million for ALS research in six weeks) and know that it only happened after you spent a pre-ALS life inspiring your family, your friends, and your teammates with your attitude, your work ethic, and your kindness.
You hear about the future Pete Frates Center, a 31,000-square-foot indoor training facility with everything from hitting tunnels to a hospitality village, and you are certain they could not have named it after anyone better than the pride of the class of 2007. The forever tribute to the onetime Eagles baseball captain turned all-time ALS fund-raising champion is a permanent reminder of the power one individual can have on the world.
“We’re just about to embark on the five-year anniversary of the Ice Bucket Challenge, and the movement that has been made in the world of ALS research and potential treatments almost coming to trial is beyond profound,” Nancy Frates said. “It was, and will be known as, the beginning of the end of ALS. So to have this building named after Pete is something that our family is so truly grateful.”
These are the moments the Frates family treasure, the welcome highs set against the difficult lows of living with ALS. But make no mistake, Pete Frates is living with ALS, not just dying of it. Yes, it takes the family more than an hour and a half to be able to get him out the door, the planning for which will start as early as the night before an event. Yes, there is a mother who hasn’t heard her son’s voice in five years, a father whose dreams are enlivened by the boy who once ran across football fields, circled the basepaths or speedskated on ponds, a wife who learned only eight months after meeting her future husband what his medical fate would be. Yes, this is a diagnosis with no known cure whose initial prognosis is 5-7 years.
But they don’t dwell in those places.
They look at days such as Wednesday and they embrace them, knowing the joy they bring Pete, knowing the impact they have on the ALS community. Without continued attention fund-raising efforts can wither and fade, and that is a fate this family won’t abide.
“We’re critically aware of that because the whole ALS community looks at our shoulders all the time,” John Frates said. “Sometimes I say OK, we’ve moved the ball 99 yards down the field, maybe there’s another family or ambassador can pick up the ball, but if it’s just the patient themselves as you can see, it can be hard. We just happen to be in a unique situation, where Pete is young, we’re relatively young, and we have this connection to the media. We don’t judge others who might be bitter and angry about what’s happening, we just try to stay positive and upbeat even though you know, it’s devastatingly cruel.
“It’s obvious to anyone. It’s the worst. But I call it devastatingly beautiful because look at the beauty shown for us today.”
Look at the love. The Pete Frates Center will be built on it, there for generations to come, who might someday ask about the man behind the etching on the wall and will, for a moment, imagine what it must have been like to be Pete Frates.
I’ll give you a word . . . amazing.
Tara Sullivan is a Globe columnist. She can be reached at firstname.lastname@example.org. Follow her on Twitter @Globe_Tara.