Former Firefighter Forges New Path Amidst Burning Pain
Robert Hinton knows a lot about fire and burning.
The 49-year-old found his calling early as a firefighter and emergency medical technician. He loved the adrenaline of going into a fire and helping people.
Robert has also been on fire for the last 17 years.
LIFE HALTS WITH A CRASH
On February 28, 2005, Robert—then 32, a devoted husband and the proud father of two young girls—was rear-ended by another driver.
“That morning was probably the worst day of my life,” Robert says. He felt something rip in his right shoulder during the crash: He’d torn his labrum.
“[A shoulder specialist] said, ‘This is no big deal. We’ll be able to get you fixed back up with minimal surgery,’” Robert remembers.
Less than two weeks after the surgery, Robert woke up early, screaming in agony. He was on fire.
“It felt like somebody literally just poured gasoline on my entire arm and lit a match,” he says.
For months, Robert and his wife, Lee, bounced from doctor to doctor trying to figure out what was wrong. “Nobody believed me,” he says. “The hair had fallen out of my right arm completely. My skin was starting to discolor; it looked dark blue and purple, like bruising. My hand was starting to turn ice cold all the time.”
Doctors could not find an infection or cause of the burning pain. Robert was turned away from physical therapy.
“The physical therapist said, ‘We don’t want to deal with him anymore. He’s a medical liability. We don’t want to be sued,’” Robert recalls. “They couldn’t even touch my arm because I was just screaming in pain.”
In the spring of 2006, the pain began to radiate and spread from the original injury. It spread across Robert’s chest and traveled down his waist, eventually spreading to his right leg and foot, which also began to discolor. His toes began to curl inward, and Robert had trouble walking.
In the fall of 2006, he was driving to the store when he was rear-ended again. A few months later, the pain began on his left side as well.
Heavy painkillers did little to touch the pain. Robert became effectively bedridden for 14 months and gained more than 100 pounds.
Finally, a doctor said that it sounded like Robert had reflex sympathetic dystrophy, now known as complex regional pain syndrome (CRPS). CRPS is a neuropathic condition that causes extreme, prolonged pain following an injury.
PUTTING A NAME TO THE PAIN
At last, Robert had a name for what was happening to him.
“I looked it up, because I had no idea what the hell it was, and I literally broke down and just started crying hysterically because it sounded like a death sentence to me,” he says.
Robert began to search social media to connect with others with this condition. One, named Lindsay, who now is one of his closest friends, connected him with a new doctor—a leading expert on the disease in Philadelphia with a four-and-a-half-year waiting list.
When Robert, who lives in Rhode Island, finally saw the doctor in late 2009, he was officially diagnosed with CRPS and started on ketamine treatments.
“My pain started to go down from a 10 to a four,” Robert says. “From where I was feeling burning pain hotter than a house fire, and I’ve been in some [house fires] that burned down to the ground before.”
Being chronically ill took a toll on his relationship with his wife and girls, and the adjustment period was difficult. He says Lee is a superhero for her compassion and for running the household and supporting the family financially.
A HEAVY FINANCIAL COST AS ILLNESS PROGRESSES
When Robert’s pain made it impossible for him to work, the loss of his income took a major toll.
“We had to sell our home,” he says. “We couldn’t afford the mortgage payment. We were going to the food pantry because we couldn’t afford the groceries. We had a really hard time telling family members we were going to food pantries. My wife wasn’t eligible for food stamps even with me being sick, which was a slap in the face, because she grossed $6 too much a month. It put a whole new perspective on the joys of being chronically sick and living paycheck to paycheck.”
Robert eventually was approved for Social Security Disability Insurance (SSDI) benefits in 2010, which helped a bit with bills and care, but not until he had to enlist the help of a lawyer after being denied for the benefits three times.
The ketamine infusions also put a monetary strain on the family—between copays and travel costs, he spent around $1,500 for each trip.
Then in 2012, the CRPS began damaging his stomach, and he underwent gastric bypass surgery and was able to lose the weight he put on while being bedridden. “From my leg pain to just my overall health, it was easier for me to move,” Robert says. “It was a blessing in disguise.”
He regained some mobility, though still had to use a walker and a cane. Though his condition continued progressing, causing migraine and thyroid issues, Robert was able to play with his girls and enjoy life.
“At this point, I knew I was never going back to work, and I was OK with that,” he says.
Robert admits it was a long path to get to this acceptance.
In 2011, he was so angry and so tired of how his life was going. “Being sick and chronically being stuck at home, you have a lot of depression,” he says. “One night, I decided I wanted to try and take my life. I was angry. Nobody was home. I just wanted to go to sleep and not wake up.”
Convinced he had no other options, he took a large amount of pills. But he woke up the next morning, screaming and vomiting. “That was the first time I prayed to God in probably a year,” he says.
He began to search for his purpose.
“From that point, I started helping people with the disease that were starting to get newly diagnosed,” he says.
People from around the world found Robert online and asked him for advice, and he began connecting them to resources for free flights to medical appointments through organizations such as Patient Airlift Services (PALS). He received similar assistance for his trips from Rhode Island to Pennsylvania when long car rides were agony and flights were too expensive.
He began teaching people how to advocate for themselves and document their care.
“I’ve told doctors over the years, ‘I don’t have an MD at the end of my name, but you’re not in my body. You don’t know what I’ve gone through over the last 17 years. You can’t tell me what I’m feeling,’” he says. “A lot of doctors over the years have told me, ‘You’re making this up. You just don’t want to go back to work. It’s all in your head. You can’t be in this much pain.’ But you know, the sad part is, I am. I am in this much pain.”
He credits his friend Lindsay with giving him hope and now aims to give others the same hope. “The pain I have is real,” he says. “I want to be able to continue to help people because, at one point, this disease had taken so much from me, but now I look at it as a blessing. I lost 90% of my friends when I got sick, because everyone thought I was just lazy. Now a lot of my friends are chronic pain patients I met over the years.”
Today, Robert finds joy in small pleasures—working on jigsaw puzzles, cooking, enjoying time with his family, and driving his sleek orange Ford Mustang, which he describes as a dream come true. The fire consuming his body hasn’t been extinguished, but he faces each new day with hope.
If you are struggling with suicidal thoughts and need help or someone to talk to, you can dial 988 to reach the 988 Lifeline. Additional help is available in the Resources section on page 68.