A Bittersweet Graduation For Patients At The Mass. Hospital School

Brian Devin, CEO of The Massachusetts Hospital School, speaks with student Miguel M. in the cafeteria after lunch. (Jesse Costa/WBUR)

Brian Devin, CEO of The Massachusetts Hospital School, speaks with student Miguel M. in the cafeteria after lunch. (Jesse Costa/WBUR)

By Gabrielle Emanuel

CANTON, Mass. — It’s lunch break and there’s a wheelchair traffic jam in the school hallway.

Friendly shouts of “Beep! Beep!” and “You’re blocking traffic” interrupt chatter about one kid’s new backpack and another guy’s birthday plans.

It’s a typical school scene, except a bunch of the kids are using computers to talk and others breathe through ventilators.

Like students across the country, many of these kids are getting ready for graduation. It’s a bittersweet time for graduates of all stripes, but perhaps nowhere is it more bittersweet than here.

All of the 91 students in these hallways are also patients. When they graduate – as about a dozen will this year – they’re not only leaving their friends and teachers, they’re leaving the hospital they’ve called home for years, and in some cases, a decade or more.

The campus’ main entrance is on a rural road in Canton, where a flashing sign reads: The Massachusetts Hospital School.

Brian Devin, the CEO, says that when cars zip past drivers often “think it’s a school where they teach people to work in hospitals.”

Devin says it’s a fair assumption, but completely wrong. This facility is part pediatric hospital, part elementary and secondary school. It serves children with severe disabilities — muscular dystrophy, cerebral palsy, brain injuries — and is run jointly by the state Department of Public Health and the Department of Education.

Children as young as 6 or 7 can be admitted to the hospital and they often stay at this lakefront campus until the kid’s clock strikes 22 years old, when it’s time to graduate and it’s time to go, regardless of whether there is another alternative place to go.

A Non-Institutional Hospital

As the hallway traffic starts moving, the students wheel themselves out into the brisk spring air. They race down covered ramps toward horseback riding lessons, speech therapy sessions and wheelchair hockey practice.

Those white ramps create a web that connects all the brick buildings on this idyllic, 160-acre facility.

“The kids are all over the place. They are not always with staff — we don’t want them to always be with staff,” Devin says. “We want them to be with themselves and with other kids as much as possible. There is no real institutional flavor.”

The Massachusetts Hospital School’s ultimate goal is to cultivate as much independence as possible for these children. Continue reading

A BB In His Heart, Last MGH Bombing Patient Heads To Rehab

Near the finish line of the Boston Marathon, a firefighter worked feverishly to stop blood pumping out of Marc Fucarile’s right leg. By the time he finished a tourniquet and called for help, all available ambulances had left Boylston Street, full of marathon bombing patients. A police officer volunteered the spare seats of his wagon, typically used to transport prisoners. The two men raced Fucarile, his skin still smoldering, to Massachusetts General Hospital.

“Yeah,” Fucarile said with a laugh, “with a police officer screaming out the window, ‘Get out of the way!’ I think I might have been on a bench part of the seat and the firefighter was trying to hold me on there. I was slamming my head a lot.”

Marc Fucarile, the most seriously injured bombing patient treated at MGH, is ready to leave for Spaulding Rehabilitation Hospital. (Martha Bebinger/WBUR)

Marc Fucarile, the most seriously injured bombing patient treated at MGH, is ready to leave for Spaulding Rehabilitation Hospital. (Martha Bebinger/WBUR)

Surgeons told Fucarile if he’d arrived two or three minutes later than he did he would have lost too much blood and died.

Now, 45 days later, Fucarile is checking out of Mass General, a hospital he says rivals 10 star hotels. He has a BB lodged in his heart that doctors say is better to leave for now. His right leg was amputated twice — above the knee after an infection invaded the first wound. And he may still lose the lower part of his left leg. But Fucarile is ready for Spaulding Rehabilitation Hospital. (Just one marathon bombing patient has not moved on to rehab: Ericka Brannock is expected to leave Beth Israel Deaconess Medical Center Friday.)

While Fucarile, who’s from Stoneham, celebrates the next step in his recovery, his future, as with many marathon bombing patients, is uncertain.

“It’s still wide open, it hasn’t been healed or shut yet,” Fucarile said describing the wound. “It has sharp pains and the meds can’t do nothing about it.” Continue reading

Survivors Face A Major Gap In Post-Cancer Care

By Rachel Gotbaum

In Massachusetts, 345,000 people are living with cancer today. With earlier diagnosis and more effective treatments, the American Cancer Society expects the number of cancer survivors to climb nearly 40 percent over the next decade.

But cancer patients, while thankful for life saving treatments, are often living with side effects including chronic pain, fatigue and other disabilities. Often times they are told that, post cancer, this is the new normal. But that’s beginning to change.

A Major Gap

At 38, Julie Silver was diagnosed with breast cancer. As is typical with many cancer patients, Silver’s treatment included surgery and chemotherapy. She then became very ill.

“I was really, really sick, sicker than I ever imagined,” Silver said. “I did some exercise testing and I tested out as a woman in my 60s and I was in my 30s. So I had aged three decades in a matter of months through cancer treatment.”

Silver, who is a doctor herself, says after her cancer treatment she was so fatigued and in so much pain that she went to her oncology team for help. She was told to go home and recover.

“I was never offered rehab,” Silver said. “The conversation should have been, ‘We’re going send you to cancer rehab, help you get stronger. We’re gonna try to decrease some of your pain, your fatigue. We’re gonna try to get you back to taking care of your kids and eventually get you back to work to take care of your patients.’ ”

Physical therapist Jennifer Goyette provides lymphatic drainage therapy to cancer survivor Deborah Leonard. (Rachel Gotbaum for WBUR)

Physical therapist Jennifer Goyette provides manual lymphatic drainage therapy to cancer survivor Deborah Leonard. (Rachel Gotbaum for WBUR)

But that’s not what happened, and that’s when Silver realized there was a major gap in the care for people who survive cancer. She says just as patients who’ve had a stroke are offered rehab therapy, so should patients who have undergone toxic and invasive treatment for cancer.

“For example, a woman who has a mastectomy, she might have chemo, radiation, to reconstruct the breast she might have a muscle transplant,” Silver explained. “So she is going to have a lot of scarring, weakness, she may have loss of range of motion. She’ll be in a lot of pain.”

In 2009, Silver, who is a rehab specialist and teaches at Harvard Medical School, created a comprehensive program specifically designed to help cancer patients with rehab after their treatment. She is on a campaign to get hospitals and other health care facilities to adopt her program: Survivorship Training and Rehabilitation, or STAR. Continue reading

When The Grim Prognosis Is Wrong: A Brain Injury With A Happy Ending

Jason Crigler, 7 months after his brain hemorrhage, and in 2008, with his wife, Monica and daughter, Ellie (Life. Support. Music.)

Doctors don’t always know best.

Just ask Jason Crigler, musician, father and survivor of a massive brain hemorrhage from which doctors said recovery would be unlikely.

In August 2004, Crigler, a much-sought-after New York City guitarist with a two-months pregnant wife, was playing onstage at a Manhattan nightclub when, suddenly, he had a brain hemorrhage. He threw off his guitar and jumped down from the stage. He was rushed by ambulance to St. Vincent’s Hospital where his family was told the bleeding was severe.

A neurosurgeon offered this grim prognosis: even if Jason lived though the night (and the chances of that were slim) he’d likely have little brain function left and the old, pre-injury Jason would probably never return. (The cause of the hemorrhage, the family would later learn, was an arteriovenous malformation, or AVM — an abnormal collection of blood vessels in his brain that burst.) “The doctor said he wouldn’t be the Jason we knew and loved,” Jason’s sister, Marjorie said this week, speaking to an auditorium full of brain science students and faculty at MIT. “Most of his doctors didn’t think this recovery was possible.”

At the time, Jason was 34 years old.

But Jason, a Manhattan kid who picked up the guitar at 16, proved the doctors wrong. Today, he’s back playing music, taking his daughter to school and speaking publicly about his medical odyssey. He credits three essential forces with pulling him back to life: his music, fatherhood and his family’s unyielding, persistent faith in his recovery. (I would also add a fourth factor: extremely good luck when it came to health insurance and the ability to move to Massachusetts for care. As one of Jason’s doctors put it: “If you’re going to have a brain injury, this is the state to do it in.”)

Indeed, from the very beginning, Crigler’s wife, parents, in-laws and sister (who kept a journal of the saga) refused to accept the bleak portrait doctors painted. Though at the beginning things did seem bad. “It is so disturbing to see my brother curled in a human knot,” Marjorie wrote shortly after his injury.

There were a barrage of medical complications both major and minor — infections, meningitis, seizures, recurring urinary tract problems, his skin flaking off in patches due to the long hospitalizations. For some time he lay in a coma (a tube draining fluid from his brain disconnected accidentally, exposing his brain to the air for two minutes.)

But despite these setbacks, family and friends stayed by his side, constantly managing the kind of small, tedious daily tasks that helped Jason — haltingly, painfully, over years — gain his autonomy back. When he was unable to talk or move, the Crigler clan played music for him, they read him the newspaper, made jokes and sat around his hospital bed cracking each other up.

The family would visualize Jason healthy and walking and playing the guitar and encouraged him to do the same. They told him they loved him over and over again. “Most importantly, we had an open mind,” Marjorie said.

About four months after the brain injury, Jason told me he reached the maximum $1 million cap on his New York health insurance. So his wife, Monica began searching for rehab centers that would both accept Jason and be affordable. She called Spaulding Rehabilitation Center in Boston and after hearing Jason’s case, an administrator agreed to admit him with Medicaid pending. Continue reading

Stabbed By A Stranger, A College Student’s Long Road Back

Annie Ropeik (Jesse Costa/WBUR)

Annie Ropeik sitting in Amory Park in Brookline, MA. (Jesse Costa/WBUR)

By Annie Ropeik
Guest contributor

One morning, as I was walking to work, I was stabbed four times in the back and neck by a mentally ill stranger.

It was Aug. 4, 2010. I was twenty years old, a rising junior at Boston University, and I was a block away from my internship at NPR. I was not robbed; the attack was unprovoked. I was just unlucky.

I had stopped on a street corner to wait for the light when I felt someone pulling my hair. A woman — my attacker — had come up behind me. We struggled, and I stumbled and fell. I found myself lying on the street, on my back, with blood streaming from a wound in my neck.

The woman stood over me, holding a switchblade three or four inches long, her expression enraged but her eyes somehow vacant. I was sure I was about to die. But then she just dropped the knife and walked away. I crawled toward the sidewalk, screaming. It felt like forever before someone came to help me, though I think in reality it was only seconds before several passers-by gathered around me. One called 911 and held my hand; another called my mom; a few others put pressure on my wound to stem the bleeding.

“I can’t feel my left leg,” I said. Though my pain was intense, I could only feel it in little dulled-out patches, through a haze of shock. Still, I was acutely aware that I couldn’t move my leg. It was just gone. I didn’t know what was happening, and I was terrified.

We’re moving to Iowa

The pedestrian who called my mom had left a worst-nightmare voicemail: “Your daughter has been stabbed and they’re taking her to Howard University Hospital.”

Both my mom and my dad made it to the hospital around the same time my ambulance arrived; they ran lights and broke speed limits most of the way from our home in Silver Spring, Md., about 25 minutes away. The first thing I said to my mom was, “I shouldn’t have been late for work.” (I had planned to stay late that day, so I had caught the Metro about an hour later than usual.)

My mom replied, “We’re moving to Iowa.” It was half a joke — we’re good suburbanites who love the city — but the attack did shake some of our trust in D.C.

In the emergency room, a neurologist ordered me directly into an MRI, before the staff had even stopped my bleeding. What followed was a harrowing half-hour of loud clanging and claustrophobia. Despite a morphine shot, I was still in pain. I was slowly coming back to myself, and as I did, the pain grew.

I narrowly missed out on a blood transfusion. The doctors easily stitched up my five wounds: two in the center of my mid and upper back, a big one on my right hip, and a little diagonal above my collarbone that had punctured all the way back out my left shoulder. But the MRI revealed that the knife had nicked my spinal cord in the mid-back wound, severing the nerves that let me move my left leg and feel certain sensations on the right.

This new normal penetrates to every corner of your life.

That morning, I had been a happy, healthy, fully mobile college student with a profoundly normal life. I was a habitual speed-walker, I loved to bike around my neighborhood in the summer, and I’d always give up my seat on the bus. I was a scuba diver, and at school, I sang and danced with my a cappella group. But by mid-afternoon on that August day almost two years ago, I was a semi-paraplegic – for how long, I didn’t know.

What follows is the saga of my medical and emotional rehabilitation, still ongoing. Most people will never experience such a crazy journey in their lives. But this is not entirely a horror story. Mostly, it’s a story of how I adjusted to my “new normal,” a popular phrase in rehabilitation parlance.

It’s about how I tried to let this unexpected and dramatic shift in my reality become my regular life. This new normal, even for a relatively minimal injury like mine, penetrates to every corner of your life — physically and emotionally. You stop taking the subway and start driving. You think twice about walking to class in the snow, and you take a pass on pick-up kickball with your friends. You learn to think of yourself as handicapped, and you devise a canned explanation for your scars and your cane. And you learn that even from bad misfortunes, you can grow strong.

I graduated on time from B.U. in May. But while most of my classmates are spending this summer at their first jobs, I’m taking a little break to devote unlimited time to physical therapy — just another part of my new normal. Continue reading