Finding a Way Through, Together

Darrin White’s life has meandered. He was born in the Canadian province of Manitoba. His father was in the Canadian Armed Forces, so their family moved a lot—“roughly every 20 months of my childhood,” Darrin said. As an adult, he lived for “a stint” in Ottawa, another stint  in Halifax, followed by time in four Canadian Arctic communities (three in Nunavut and one in the Northwest Territories, the smallest of which was home to about 450 people). He’s lived on Prince Edward Island and is now back in Halifax, the capital of Nova Scotia.

His career path has also been unconventional. He worked as a butcher. And a volunteer firefighter. And at the Children’s Hospital in Halifax. He studied sculpture and jewelry-making, getting more deeply involved in the arts before running the Great Northern Arts Festival, a ten day celebration of Arctic Canadian Indigenous art, culture, and music. Somewhere along the way he took a job as the Executive Director of an arts funding agency in Prince Edward Island. 

He did all this until his children got older and he realized he needed more stability, turning instead to the civil service.

Today, Darrin is a full-time, permanent investigator at the Office of the Information and Policy Commission (OIPC), a watchdog agency for government agencies, and has been appointed to a temporary position as a human rights officer for the Nova Scotia Human Rights Commission. 

“I absolutely love it,” he told me. 

But since his diagnosis of granulomatosis with polyangiitis (GPA) vasculitis in August 2022, his relationship to himself, his work, and his family has been more fragile. Once again, he’s had to face life’s tenuous, meandering path and, despite its twists and turns, carry on. 

If you ask Darrin to describe himself today, he insists he has to split himself into two: “pre-disease” and “post-disease.” “I don’t think I’m alone in that,” he said. 

Before vasculitis, Darrin was a risk-taker. “I didn’t really have to think about the consequences of my choices.” When he lived in the Canadian Arctic, he would go out on the tundra and the sea ice by himself. 

“Today,” he said, laughing, “before I go for a walk, I look at the sidewalks: are they too slippery for me?” 

Some of it is just age, he says (he’s 55 now and on twice-daily blood thinners), but most of the change has been spurred by vasculitis. 

When the pandemic shuttered the world as we knew it and forced employees like Darrin to work from home, he was eager to get back to the office. “I’m very much my father’s son,” he said, adding, “Working is a big part of our personal identity.” He’s driven at work, and driven to do work that’s meaningful: “It’s important to me to feel like I’m doing something good.” But returning to the office meant something deeper, too—connection. “My colleagues are part of my social circle,” he said. He wanted to belong to a community again. 

But as the pandemic restrictions finally receded and his colleagues began returning to work in person, Darrin was not among them. His mid-pandemic vasculitis diagnosis and subsequent prescriptions of high-dose prednisone and methotrexate left him immunocompromised. “It wasn’t safe for me to be at work,” he said. “So I wasn’t.” 

As Darrin continued to work from home, he found himself on unfamiliar footing. Prednisone affected his sleep cycle and his ability to think straight. He felt like he was riding a wave of energy throughout the day: rising and falling at all the wrong times. He is grateful that his employers worked with the new waves of his disease, offering him the flexibility to work for a few hours, then take a break.

Since Darrin’s vasculitis diagnosis, he has become “something of a stoic.” “It helps,” he says, “to take away the emotionally-charged nature of dealing with the disease.” He’s trying to face it, head on, without it submerging him. 

“The trick,” he said, “is not to feel sad about the change in yourself before and after. Vasculitis is not curable right now: here it is. This is it.” 

Darrin seemed to be saying: This is my life; I must take it. All the good, all the bad, all the blessings, all the challenges, all the love and the obstacles. Everything. 

In the spring of last year, just as he had tapered off prednisone and was finally feeling more like himself, he was rushed to the hospital. In March, it was a pulmonary embolism. “It almost killed me,” he said. In June, an unfortunate complication between two of his medications led to viral and bacterial infections, which caused full-on septicemia. “I was in really bad shape.”

As humans, we can only remain stoic in the face of so much. Darrin began to slip into despair. Describing his plunge into grief, he said, “It was hard to pull back out.”

His hospitalizations heightened his sense of his own fragileness. “We’re all on a ticking clock,” he said. “None of us get out of this alive. What’s happened for me is I don’t know when my deadline is, but it’s probably sooner than it would have been before the disease.” He began to reevaluate his priorities: it is time with his kids and family that he cherishes most. 

A few weeks ago, Darrin’s brother invited him and their dad to come over and watch the first two episodes of a new Apple TV show about World War II bomber pilots. “My dad and brother were military,” he said. “My grandfather was a navigator in WWII for the British. There’s a lot of family history tied up in this.” They were going to watch the show on his brother’s big TV with the big sound system. 

But just before the watch party, he noticed a cold coming on. “I had to make the choice not to go. It hurt. That hurt.” 

“How do you manage your infection risk while wanting to spend time with all these people living their lives?” Darrin asked. Before, he said, he didn’t have to think: “Is this cold going to trigger a relapse?” “Am I going to get a secondary infection and die?” He is learning moderation; caution. “As much as your friends and family love you, they don’t understand. They can’t. They can’t be faulted for that. That can be frustrating.” 

Darrin says he spent the “first 45 years of my life thinking that asking for help was an absolute sign of weakness. . .I grew up in the 70s and 80s surrounded by that messaging.” But, today, he’s learning to ask for help and understanding. 

“The Vasculitis Foundation (VF) has been so important for me,” he said. He regularly attends the online support groups and makes an effort to be vulnerable and open; “it’s how I get the most out of it,” he said. 

In the support groups, he knows he is surrounded by people who “get it,” who understand. When he slipped into grief during his hospitalizations last year, he showed up—on Zoom—to one of the VF support groups from his hospital bed; “it was so important to me to make that meeting.”

Recently, he was in a relationship that was struggling. “I’m not going to say it was struggling all because of the disease, but the disease and medications certainly played a role,” he said. So, at the next support group meeting, he asked if that—navigating relationships with vasculitis—could be the topic. Everyone said yes.

“We were able to talk openly about what happens with this disease, how your body changes, what the meds do to you, the psychological impact. People shared how they’ve discussed vasculitis with their partners. Where else am I going to have that conversation? Some good advice was shared, but it was about more than that. It was an opportunity to have those discussions with people who know.” 

When you’re with people who know, you remember: you’re not alone. You remember: we will find a way through this, together. 

Today, Darrin is back in the office, wearing a mask. He has a workplace accommodation, going into the office two to three days a week and working the rest from home, with additional accommodations if he needs more work-from-home time. “I feel fortunate,” he said. “My employers understand my need to recover.”

They also understand that Darrin is driven, that he’s anxious to “get back at it.” That he wants to be there, part of a team, supporting his colleagues. He’s eager to contribute. 

“I miss being in the office full-time, but am I content with where I landed? Yeah,” he said.

Here it is: his life. No resisting, no wishing it away. This is it. With a steady gaze, Darrin is doing his best to make it as rich and fulfilling as he can.

Written by Ashley Asti