The long road forward
Wearing a Cape Cod sweatshirt that matches his blue eyes, Paul White, 48, sits down over a cup of coffee and talks about navigating homelessness—something he never imagined he’d experience firsthand when he moved to Michigan from Massachusetts in 2012.
Growing up in a working class family, White had learned the value of grit and hard work, of pluck and self-reliance.
After high school, he went to work doing the kinds of things his tall, strong frame seemed built for—physical labor in the construction, landscaping and moving industries.
He spent his early adulthood “working and playing sports, every day,” he said.
Then, at age 30, White suffered an on-the-job back injury that yanked him out of the workforce for a time.
The damage was so bad his doctors recommended he apply for disability benefits, but he refused.
His work ethic overpowered the pain. He went back to work and took a few college classes on the side.
“I was proud. I worked nonstop, kept making money,” White said.
“I got married, I had a child, I took care of them. I worked 70 hours a week. … I could mask the pain and still function.”
White eventually ended up in a commissioned sales job that was easier on his back, but the high cost of living in the Boston area made it hard for the family to get ahead.
In 2012, lured by the promise of lower living expenses, they decided to move to West Michigan, where his wife had grown up.
Shortly before the move, White received some difficult news. After experiencing trouble with stuttering, he had an MRI and was diagnosed with multiple sclerosis, an incurable central nervous system disorder that disrupts communication between the brain and the body.
Doctors in Massachusetts again recommended applying for disability assistance, but White wouldn’t budge. He resolved to keep working, determined to take care of things on his own.
The move to Michigan didn’t provide the opportunities the couple had hoped for.
“It’s a beautiful place, it’s a very peaceful place,” he said. “But it’s definitely hard to make the money you need in order to get by.”
Hourly wages didn’t match the levels White and his wife were used to out East. Financial pressures persisted. To make matters worse, White began experiencing uncomfortable side effects from his injectable multiple sclerosis medication, Copaxone.
These stressors caused his mood to tank and his marriage to slowly fall apart.
“I’m a very happy-go-lucky person … but I became very moody after the diagnosis,” he said. “It was almost as if I was dealing with bipolar (and that) damaged the relationship between us.”
In 2014, the couple divorced, agreeing on joint custody of their son, who is now 8.
White rented an apartment in Lowell, Michigan, while his ex-wife and son moved 40 miles north. Distressed by the distance between them, he worked to see his son as often as possible.
“I just don’t like not being there,” he said. “It’s hard. You get lost in that.”
In 2015, White experienced a flare-up of his multiple sclerosis symptoms, including growing problems with balance, short-term memory loss and fatigue.
Both his medical limitations and the local economy conspired against him, making it increasingly tough to find work.
Though his low-income status made him eligible for health insurance through the state, red tape left him without medication for three months, exacerbating his symptoms.
Around the same time, White developed new pains in his hips. A visit to his primary care doctor, Harland Holman, MD, of the Spectrum Health Family Medicine Residency Center, revealed osteoarthritis in both hips.
“So I was like, OK, that’s three strikes,” White said. First a traumatic back injury, then a multiple sclerosis diagnosis and now osteoarthritis—not to mention the Type 2 diabetes he developed in his mid-30s.
He found himself out of work, out of money and on the road to eviction.
Finally, after 18 years of resistance, he gave in and applied for disability benefits.
The claim was denied.
By now, homelessness looked inevitable. Social services agencies advised him that he would have to be without a home before he could access various forms of public assistance.
In September 2018, evicted from his apartment, White began sleeping at a homeless shelter in downtown Grand Rapids.
He started using a cane, which provided the stability he needed to walk every day from the shelter to the coffee shop, park, library and other public spaces. Here he passes the time while trying not to come across as homeless.
“I try not to display anything, you know—talk about my homelessness or anything like that, with most people,” he said. “If they don’t ask, I don’t tell.”
White found a lawyer and filed an appeal of his disability denial. He received a hearing date and prepared his case. Now he awaits the judge’s decision.
He also learned, out of necessity, how to manage his health care while trying to navigate his way out of homelessness and back into his son’s life.
“I’ve got to get up there, be part of his life again, be there for him for school, for problems.”
Talking with his son on the phone is OK, he said, but it’s nothing like spending time together.
Switching to Ocrevus
Back when White moved to Michigan, he began receiving treatment for his multiple sclerosis from the Spectrum Health Neurosciences team on the East Beltline in Grand Rapids.
Danita VanderKodde, PA-C, MSCS, took over his care in 2015 and has treated him ever since.
She’s been impressed with his resilience and insight in the face of countless challenges.
It was White’s idea to change medications last year, after a promising new MS drug came on the market, she said.
The new medication, Ocrevus, has solved a lot of practical problems for White. Delivered by twice-yearly infusion, Ocrevus eliminates the need for daily shots. This means he no longer experiences the side effects of Copaxone and no longer has to worry about taking care of needles and syringes.
“I didn’t want to be out here on the streets dealing with those needles and I didn’t want to keep forgetting to take it,” he said. Plus, he had no way to refrigerate the medication, which had to be kept cool.
From a provider’s perspective, Ocrevus gives VanderKodde the peace of mind that her patients are getting the therapy they need.
“We know they’re receiving their care because they’re here with us” for the four-hour infusion, she said. “It was a really good idea—just a really good fit for Paul.”
So far, he’s seen no side effects from Ocrevus, though he knows it will be another year before VanderKodde can say how well it’s working.
White also continues to see Dr. Holman, who treats his diabetes and chronic pain.
Dr. Holman considers White an inspiration—someone constrained by his circumstances who keeps working to overcome life’s obstacles. He acknowledges how hard it is for White to manage his diabetes when he’s reliant on the food homeless shelters and pantries provide.
“He knows what he needs to do lifestyle-wise, but I think his economic conditions have made it challenging and frustrating,” Dr. Holman said. “He really highlights how the social determinants of health can really impact somebody.”
Eye on the goal
Anyone who’s acquainted with White knows about his son—his greatest motivator.
“My whole reason for going forward has always been to get toward my son,” he said. “Right now the only thing that makes me happy is him.”
Securing housing is the first step for White. The next step, he said, is finding a job that fits his situation. He has no interest in “living off the state” for the long term.
Dr. Holman holds out hope White could work again, given the right circumstances.
“He’s a picture of somebody who, if he’s given the opportunity to work a job that would fit with his health conditions … would really thrive,” Dr. Holman said. “It’s just hard to find something like that.”
VanderKodde, who sees White twice a year, admires his unwavering drive.
“He’s always been headed in one direction,” she said. “He always seems to be headed forward—it’s just been a really long road.”
As he waits for the results of his disability appeal, White is trying to stay positive, to keep as active as his symptoms will allow and to pay attention to the small things in life.
“Every day I notice things that I never noticed, even though I’ve walked up and down the same street every single day for nine months. There are so many beautiful things in life that you can take advantage of just by seeing them, appreciating them,” he said.
“I’m trying to appreciate my life a whole lot more than I have in the past.”