Believing Without Seeing
Matthew Weed, PWD type 1, thrives with a little help from friends.
After Growing up in Colorado, Matthew Weed is at home on the slopes. But Weed faces bigger challenges than most of his fellow skiers. To enjoy the activity he’s done since he was 5 years old, Weed asks friends and volunteers to map out his ski route with words and tracings on his hands before he starts downhill with a guide shouting commands as they go. He leans on his guide’s verbal commands to make it to the bottom of the slope. He may be the only one wearing a vest that says “Blind Skier,” but he’s not alone on his snowy journey.
To rely on someone physically and verbally is an example of Weed’s belief system: No one is alone. We can achieve more individually if we all work together.
There is no better example of this than Weed himself. Normally, Diabetes Forecast notes academic degrees after a person’s name; his list is particularly impressive: a doctorate in genetics from Yale University, a master’s in genetics from Harvard University, a master’s in public affairs from Princeton University. Most recently, he was a visiting scholar in health policy and bioethics at Yale. Weed, 44, of New Haven, Connecticut, has spent his life in academia and achieved greatness. But he couldn’t do it without a team of volunteers who assist him every step of the way: On top of being sightless, Weed manages what he calls “very brittle” type 1 diabetes.
There is no safe way for him to manage his diabetes alone (“Sightless Solutions?”, below), so over the years, Weed has learned to build a support system to help him test his blood glucose, give insulin, and handle other aspects of diabetes management—and also navigate college dining rooms, Rollerblade down trails, and ski the slopes.
Weed knows the number of people like him in the world is small. But he says that no matter what challenges an individual faces, each person’s situation is not so different from his own. “I think ‘I’ is a really bad place to come from in a lot of ways,” he says. “We are all dependent on other people, even though we don’t see it. Everything that we do in our society now depends on other people. Whether we acknowledge it or not, we are part of a much larger social organism. For me to not acknowledge the people who bought in and chose to help, that denies the value of their part in what happened.”
An Exceptional Childhood
While for some people sight loss is a complication of diabetes, Weed’s blindness is not related to his diabetes. He was born with congenital cataracts and was diagnosed with type 1 diabetes at just a year old. He could see well enough to read large print as a child but lost all vision by age 8. So as he learned to read text, he also learned Braille and how to use a cane.
For Weed’s parents, diabetes was perhaps easier to prepare for, though no less a challenge. Weed’s father, who also had type 1 diabetes, and Weed’s mother taught their son he could do whatever he wanted: They took a 5-year-old Weed skiing for the first time in the Colorado mountains and supported their son’s every success. But Weed’s father also gave Weed an example of how not to care for his diabetes—he died of diabetes-related complications at 46 years old.
“Even when I started to bring back knowledge of better control from the Barbara Davis Center [for Childhood Diabetes, an Aurora, Colorado, clinic], Dad didn’t choose ... to tighten his control to do what he needed to do to make his life as long as he could,” Weed remembers. But that was motivation for Weed to make his own health a priority.
Going away to college was a new and exciting challenge for Weed, who had excelled in school as a child. But it also meant being away from his family—specifically his mother, who had been testing his blood glucose and giving him insulin for years.
You can’t move mom into a dorm room, so at first, Weed was taking multiple trips every day to the Yale infirmary to have nurses help him manage his diabetes. But he quickly figured out that if the infirmary was busy that day, a nurse would have a tougher time fitting him into the schedule. So he reached out to William di Canzio, PhD, then an interim dean at the school, who helped Weed recruit other students and people on campus to help him manage his diabetes—testing his blood glucose and administering his insulin. Along for the ride were Kent Pekel, EdD, Weed’s freshman counselor, and Kim Hannon Parrott, MAT, Weed’s first on-campus student assistant. Together, they recruited the team that walked Weed through dining halls—tricky to navigate even if you can see!—and the highs and lows that come with both college life and diabetes.
It’s the system that Weed still uses today, but as an undergrad, he never could have known how big that team would get: Weed estimates that he’s relied on more than 700 students for nearly 15,000 injections and blood glucose tests over the years.
The team method helped Weed take his first international trip—not with his mom or trained medical professionals, but with the Yale Precision Marching Band, for which Weed carried a flag.
His Career Continues
Because the Yale system worked so well, Weed used it on other campuses as he pursued other degrees and jobs. He lived in on-campus housing and recruited students who made it easier for Weed to navigate work and diabetes management tasks.
It’s not what postgraduate life might look like for some, but Weed says giving up vanity is easy when the result is better health and success. “I can ask for help and get the help I need, or I can not ask for help, ‘be independent,’ and then struggle to achieve and accomplish because I [am] too busy trying to be independent,” he says.
Help at Hand
Weed’s team of student volunteers—many of them his research assistants—help him stay the course of diabetes management. They do all of his blood glucose tests and measure his insulin doses. In return, he assists them: with letters of recommendation for grad school and fellowships, with connections and places to live when they move to new cities, and with introductions to other successful people in the field.
Weed also does his best to keep his blood glucose level steady, a near-impossible feat for anyone with type 1. While some people with type 1 diabetes test their blood glucose upwards of 10 times a day and the American Diabetes Association’s Standards of Care indicate six to 10 times per day or as needed, it’s not feasible for Weed to find enough volunteers for that many checks. He relies on a regimented schedule with just three tests and insulin shots each day: before breakfast, lunch, and dinner. To make this work, he says, “I eat a very 1960s-style diabetic diet. A lot of meat, a lot of vegetables that won’t make me run high, not a lot of carbohydrates, never any alcohol.”
Sometimes there are setbacks. Earlier in the week, Weed had what he described as the worst episode of hypoglycemia he’s had in years.
“I was a very happy 90-something in the morning,” he says now. “I shot up to 250 by lunchtime ... so we put in about three units of Humalog, plus [I ate] slightly differently to nudge myself down. But by dinner I was at 40.”
After treating the low with glucose given by a team member, Weed says his reading had spiked to 300 mg/dl by 9 p.m. that night. Luckily, members of his team offered to test his blood glucose a few times during the night. His neighbor even offered to test for him at 4 a.m. Weed calls her “a total hero of mine.”
“These things happen,” he says. “My situation is utterly not ideal. I don’t have a partner; I live alone. … All you can do is do the best you can to respond as well as you know how and slowly but surely [wind] things back together.”
It hasn’t kept him from adventures along the way. Weed’s friends and volunteers have helped him travel the globe and even learn to Rollerblade. Holding someone’s arm for guidance, he can navigate trails better than your average weekend warrior.
Shaping the Future
While academia has been good to Weed, he believes there’s more for him to explore. As president of Impactors Inc., he's an educational search consultant and motivational speaker. He’s the Red Strider ambassador for Step Out®: Walk to Stop Diabetes® on October 3 in New Haven, Connecticut. And he’s working on a book about his experiences (drmatthewweed.com). He’s hoping these endeavors might make it possible for him to hire live-in nursing help, so he can test his blood glucose more frequently and gain even better control over his diabetes.
He’s also trying to make a difference for the people who have helped him along the way. It’s about taking action to impact the lives of others—not just people with diabetes or vision impairment.
Weed’s life is indeed one of action. “It’s really important for all of us to look around and think of ways for us to make a difference for the people around us,” he says.
A number of diabetes devices and aids are targeted toward people with impaired vision: Magnifying devices make the numbers on a syringe or pen easier to see, and meters with audio cues alert users to insert a test strip and apply a blood drop, then they report the test result.
But for people who are entirely blind, like himself, there is no true product that makes solo diabetes care possible, says Matthew Weed, PhD, MPA, MA, MPhil.
When it comes to dosing his insulin, Weed relies on the student volunteers he works with to help him manage his diabetes. His volunteers are also tasked with an even more basic part of diabetes management: They help him to use his blood glucose meter. That’s because, even with meters with audio capabilities, there’s an important detail manufacturers may have overlooked.
'“The problem is, how do you get the blood from your finger to the strip in a reliable way?” Weed says. “You literally don’t know. You may not be bleeding enough, or you may not get the strip to the right place. In my situation, I use student volunteers to literally do the work that a nurse might do for people who aren’t as physically capable as I am, except for sight.”
Weed trains his volunteers to verbalize each step as they guide his pricked finger to a test strip inserted in the meter and check his blood glucose level. Lea Hamner, a recent coordinator of Weed’s medical volunteers, wears disposable medical gloves, above, as she checks Weed’s blood glucose.
They use a similar process for drawing up Weed’s injections of Humalog, Humulin N, and Levemir. Weed has insulin pens with which he can theoretically dial doses himself, but as manufacturers have moved to more uniform pen shapes, differentiated by color, he runs the risk of grabbing the wrong pen—a mistake that could be life threatening. Weed has marked his insulin pens with pieces of tape that he can feel for the difference, but he prefers the more reliable dosing that comes when someone can see what he’s getting.
Putting diabetes care into someone else’s hands may seem scary, but Weed says he’s never gotten the wrong dose. “In the 14 to 15,000 times that somebody’s had the opportunity to do my meds, the biggest screwup they make is they forget to show up,” he says. “That’s why we have the pens, for emergency backup.”