By REBECCA ELLIS Richard Muto knows how he's going to die - he just doesn't know when. Richard has lived his life at the mercy of a dilated blood vessel on his brain stem, carrying the deformity with him through every landmark. It was there in 2003,
Richard Muto knows how he’s going to die — he just doesn’t know when.
Richard has lived his life at the mercy of a dilated blood vessel on his brain stem, carrying the deformity with him through every landmark. It was there in 2003, when he moved in with his partner David Lima, and a decade later, when David could legally become his husband. It’s been there for every craft show competition he took home gold from, and it was there for his fifty-eighth birthday party last month. It will remain there for however many birthdays he has left.
Ten years from now, maybe 20, the vessel will leak too much blood for his body to reabsorb. “Eventually, it’ll kill me," he says.
To postpone this death, Richard relies on the Affordable Care Act. But, despite House Republicans’ recent withdrawal of the American Health Care Act, Richard still worries he will be one the millions of Americans targeted with whatever plan comes next, squeezed out of the insurance market as premium prices spike and his plan becomes too expensive.
Fear of the future continues to plague him. “It’s a constant, constant worry that I won’t be able to pay for what keeps me alive,” he says.
Richard was born with cavernous hemangioma, a condition that clustered 28 leaky vessels deep inside his brain tissue. Throughout his life, the vessels had steadily weakened, gradually swelling with stagnated blood.
Doctors like to compare these kinds of vessels to a raspberry or blackberry, a gentle metaphor for an oft-fatal tumor. Richard calls them “a tangle of worms.” After four decades, they could no longer keep up with the wear and tear of daily blood transport and they punctured, oozing blood into neighboring brain tissue. Richard began having weekly seizures. Gamma Knife surgery
To quell the bleeding, his doctors recommended Gamma Knife surgery and, in February of 2003, two hundred and one beams of gamma radiation were shone into his head like microscopic spotlights, searing 27 ruptured vessels shut. The twenty-eighth, connected to his brain stem, was deemed too risky to touch. It will eventually burst like the rest.
But it was a risky surgery, and Richard had survived. The doctors declared it a success.
Pre-surgery Richard was a calligrapher, an award-winning weaver, a professional pianist. Post-surgery Richard couldn't speak. He couldn't read. He couldn’t remember.
Brain damage was an inherent risk of the surgery, he had been warned. Surgeons can’t always focus the beams precisely on their target, and radiation can stray, mutating brain matter into scar tissue. In two and a half hours, his surgeon eliminated ruptures in 27 blood vessels and a lifetime of fine motor skills.
Richard would spend almost a decade re-learning life skills he had first mastered in the 1960s. First, he taught himself to turn a faucet on, and then he taught himself to turn it off. He learned to fold a blanket, crease to crease, corner to corner. He willed blocks of text to fragment into words, only to find out that when he could finally get through a full page, he couldn’t remember what had happened on the previous one.
As Richard sought to improve his mind, his physical health deteriorated, spawning a series of life-threatening illnesses — epilepsy, diabetes, hypertension, anxiety. The world he no longer knew how to navigate exhausted him, and he began sleeping 20 hours a day. Confined in his Cranston home, the pounds crept up on him and his cholesterol soon skyrocketed to 1,500. When he returned to work as an administrative assistant at the New England Gas Company six months later, he was 80 pounds heavier and he still couldn’t spell.
No longer fully literate, he was let go by his boss in 2005. “I didn’t have any language to do [the work]” he says. Soon, he didn’t have any health insurance.
At the New England Gas Company, Richard never paid more than pocket change for his medication. But after he was fired, every month’s pill supply came with decisions most people go to medical school to make — could he afford to let his diabetes flare up, his cholesterol rise for another month?
Because he had returned to work for over a year, he was no longer eligible for Social Security Disability Insurance. His husband David, who works in customer service at East Greenwich wellness agency Provant, says putting Richard on his insurance plan would have been too expensive. “We’d lose the house,” he says. Instead, David helped with payments when he could. “My husband is my family,” Richard says. The rest had disowned him when he came out at age 19. ACA was a lifeline
Then, in 2010, the ACA threw Richard and 100,000 of his fellow Rhode Islanders a lifeline. For the first time, Richard could afford to treat his seizures, cholesterol, and diabetes all at once. He began to feel almost healthy, lowering his cholesterol from a lethal level of 1,500 and shedding 40 pounds.
Now, Richard clings to the decades he was promised by doctors with a bulging pillbox.
“Every morning, I take a fistful of pills just to stay alive,” he says. A small pink one for his seizures, three to combat his diabetes, two for his high cholesterol, and one for his high blood pressure. Sometimes a fish oil or Xanax makes its way into the daily gulp.
Without health insurance, a quarter of Richard’s monthly salary working as an Education and Resource Center Manager at the Brain Injury Association of Rhode Island would go toward his monthly pill intake — roughly $2,000. But as an enrollee in the Affordable Care Act, Richard pays around $450 for his insurance plan and medication, still a steep percentage of his monthly income but “almost accessible.”
Richard believes the ACA gave him his life back. With the help of medication, by 2010, Richard had become “a force majeure in the New England handcrafted textile scene,” according to fellow knitter Selma Moss-Ward. Crowned “the Rhode Island Laureate of Fiber," Richard often takes home awards for his hand-crafted fabric and hair-thin thread. He is, he says, "one of the thinnest spinners on the East Coast.”
After years spent coaxing his arm back into consciousness with the reward of a hand-woven shawl, he was able to enter spinning competitions. A left hand that used to lie numb transformed tufts of lamb fleece into 587 yards of yarn, while competitors strained for 100 yards. Once he won first place seven years in a row, he says he had to retire. “They had a tendency to drop out when I would sign up.”
“It’s sort of like you’re an actor and you’re against Meryl Streep,” David explains.
The ACA allowed Richard to return to the Renaissance man he once was. But he knows many Americans see it as catastrophic, a source of skyrocketing premiums and little else. Throughout the presidential campaign, he watched Donald Trump brand the health law a “disaster,” vowing to “repeal it, replace it, get something great.” Though the administration’s first effort failed, as Speaker of the House Paul Ryan attested, “it is not the end of the story." This is why, Richard says, "they will try again and won't stop until they get what they want.”
With his health insurance in question, Richard no longer sees his cause of death as preordained as a final pop of a strained blood vessel. A natural cholesterol level eight times the acceptable number means almost certain heart attack without the proper pills. No anticonvulsants guarantee daily, perhaps hourly, seizures. Withdrawal from his hypertension medication means blood clots.
“I just know I won’t survive it,” he says. “I know that I will be one of the 43,000 people who most likely could die with the ACA’s repeal.”
He thinks about the pharmacy and the choices that will have to take place there. Since seizures are Richard’s most fatal symptom, he says he will continue to buy anticonvulsants until he goes broke. But he will have to “let everything else go and suffer the consequences,” strokes and limb amputations strike as they may.
Richard’s pharmacist at Stop and Shop, Louis Bergantino, says if someone can’t afford their medication, he will try to help them work around it. He asked Richard’s doctor to give him a smaller dose of a stronger prescription of his cholesterol medication, reducing the cost while lowering Richard’s “life or death” cholesterol level. He’s gotten Richard coupons from the manufacturer on one of his diabetes medications, diminishing the price to almost nothing. But, he warns, “Those could disappear at any time.”
Though rare, he says, “There are scenarios where a person can’t afford something and you’ve exhausted every possibility.”
Richard has spent the past 14 years trying to regain control of his body. Now, he spins with ease at home in the garage he and his husband have converted into a weaver’s paradise, rafters lined with bins of baby camel and alpaca fleece waiting to be transformed into yarn. “Creativity just happens in here,” Richard says.
At the garage’s center lie two large his-and-his looms — Richard’s on the left, David’s on the right. Here, the couple spends their summers, chatting as their fingers churn out shawls and scarves by the quarter-inch.
The two find peace here when the weather’s warm enough to open the garage door, and they can stare out onto the quiet street of Cranston’s West Hill Drive — the street Richard returned from 14 years ago, brain carved up with gamma rays. The street ambulances used to tear through weekly, carting Richard off to treat regular seizure activity to the deep alarm of his husband. “I gave him every white hair he has,” Richard says.
The peace that permeates the room 14 years later is a hard-earned one, and Richard and David are not quite ready to let it go.