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.
Three strikes
Then, at age 30, White suffered an on-the-job back injury that yanked him out of the workforce for a time.
Strike one.
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.
Strike two.
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.”
When I had my hearing I got excited because everything went well. It couldn’t have gone any better. 2-4 weeks the judge said. Keep your eye on the mail. 3 months later, I have lost the thrill on getting out of this situation. I am now starting to worry and stress out. I have put myself through hell to try put myself in a better place. I have hurt everyone who loves me. Putting their hearts through unwanted stress. This needs a good finish and soon. I have lost so much faith in God and in the system. This needs to end. I’m getting tired.A second winter is coming up. I cannot do this again.
So there are ignorant mean people in this world. I am not comfortable going back to the place I have been for the past year. Hurt and embarrassed by this person who seems to have been outraged by my story. I just stood up and walked away. Thank you for telling people about me lady. You are ignorant and know nothing about M.S. Or any of my disability. But you do know how to hurt someone.
Paul remember the scripture. I can
Do All things thru Christ who strengthens me.
As I cannot even begin to know everything you have been thru an how you must feel , I do know some. I am diabetic an hVe a hard time controlling my sugar. My sister had MS An went thru a lot.
I am Praying that God will lift you up an
Give you hope an a Peace that passed all understanding. Don’t give up on God, Paul he does Love you very much an longs for a relationship with you!
Praying for you, your situation an your son!!
Thank you cathy!
Paul,
I love this story. So heartbreaking, but so true. There is not enough help for people in your situations and all of the obstacles you have to jump through to get the help is ridiculous. I hate that you have to be homeless in order to receive some help. I have family and friends who battle the same conditions as you only none of them have all of them. I am so sorry, I can only imagine the amount of pain you must feel daily. Have you found a place to live yet? Has your disability finally came through? Have you tried contacting your attorney to see what the hold up is? Just curious and wanting an update. I’ll be praying for you and sending positive vibes your way.
I have not found a place yet. There are many opportunities but the properties are hesitant to rent to me.
I have received my disability and currently trying to improve my situation. I want to move closer to my son. Be a part of his life once again.
That’s wonderful news about your improving situation, Paul! We’re so happy for you. Best wishes to you!
December 31st, 2019, I continue to battle homelessness.
It isn’t my lack of abilities. It’s not my lack of funds. It is not a lack of housing. It is people seeing a disabled person looking for a home. I see it in there eyes and hear it in their voice. They do not need to say no. I already know.
I find it discouraging. I strive for better and usually it’s my disability but it’s not. People are scared to rent to me.
I have no clue as to what to do. My car is only so comfortable.
July 20th 2021, my journey ends. But I have finally been excepted for an appartment in Greenville. 3 years awaited, this new path will cure a lot of mental woes. A small door opens for me to a sum normal life. No more worrying about the cold winters or exhausting summers. My normal at best is your sick days. I will never not be sick, but at the least I will be inside my own home and able to control a little part of what is my life. I am happy and if my friend Dave from Grand Rapids who lived above Biggby reads this, I miss you. I miss our talks and our adventures out side. I miss how I could help you almost as much as you helped me. I hope your journey continues to have bright moments and you keep putting smiles on people’s faces. I love you brother! Stay strong…
This is great news, Paul. We’re wishing you all the best in your new home, with a fresh start.
Hello Paul, I’m a social worker and mom to a child with MS; I found your story reading his. I was really thankful to read your update that you found housing.
We will be praying for you, I wish there was more I could do!
Live is never done reminding you that you are currently living a struggle. And no matter how well you’re doing it can knock you down.
In my current chapter I find myself with a bone cancer diagnosis. A new struggle to comprehend. Although my life was seeing the bright side I cant get these monkeys off my back. Cancer is a very disturbing diagnosis.
We face adversity everyday and currently these days I’m winning. The roads are still paved with broken glass but I walk proud. I am strong. I am confident, and I am going to push forward. A new journey awaits me and I am going to have to be even more strong than before. I await a biopsy that could reveal my future. One that puts my son on my mind like never before. Time to get tough. Time to get going. Time to win again.