My chest tightens as the panic creeps in.
It’s the end of a grueling day of work and I’ve just gotten word: My boyfriend, Jason Massad, is coming home from the hospital after two surgeries to battle a raging staph infection in his right foot. And it’s going to be up to me to administer powerful antibiotics intravenously every six hours for the next six weeks. Or he could lose the foot.
The phone is ringing and the TV is blaring in Jason’s hospital room at Atlanta Medical Center. The machine that delivers his painkillers beeps incessantly as nurses filter in and out. Jason, in a morphine-induced haze, picks up the phone by his bedside before I can stop him. It’s the home health agency trying to arrange his release.
I urge him to hang up the phone while I track down his nurse to figure out what the hell is happening.
Nurse Pat Walden walks in and I stare at her blankly as she explains what a peripherally inserted central catheter (PICC line) is and how I will have to hook it up to the IV antibiotics at home. The home health agency wants to send a nurse to our Dunwoody apartment at 10:30 that night to train me.
This is insane, I think, my eyes burning from exhaustion.
How could doctors expect someone with no medical training to do this? What if I accidentally contaminate the IV tubing and he gets a deadly blood infection? What if I miss a dose? What if he loses his foot because of me?
How could this be happening?
Seven months earlier, Jason had fallen four stories from our apartment balcony — fracturing his skull and vertebrae, breaking both ankles and shattering his right heel on the pavement below. But he survived and we thought the worst was finally behind us. We were wrong.
I write about health care for The Atlanta Journal-Constitution, but nothing could have prepared me for the crushing responsibility of providing critical medical care to another person.
In the weeks to come, our living room would become a make-shift hospital room. A tower of plastic drawers would sit packed with latex gloves, alcohol swabs, syringes, packages of IV tubing, gauze pads and doses of heparin, a drug to prevent blood clots. A silver pole to hang pouches of antibiotics from would sit by the couch, where Jason slept.
There would be days I literally sprinted back and forth between writing about health care and providing it. Between calming my shaking hand as I held a syringe over Jason’s stomach and detailing the ways Obamacare would affect Georgians.
Jason’s injury would take over my life and transform me from girlfriend to Nurse Misty — a role that left me feeling at times more like Nurse Ratched than Florence Nightingale.
Nurse Pat sees the look of panic on my face and realizes the situation. Somehow she fixes it, and Jason stays one more night. I will get my training by the light of day. Thank God.
A chance meeting
Jason and I met seven years ago at the East Valley Tribune, a daily newspaper in metro Phoenix where we both worked as reporters. I wrote about real estate; he covered city government.
I had seen Jason around the newsroom but didn’t get to know him until a chance meeting one afternoon. He sat eating a veggie sandwich at the Subway a short walk from our office in Mesa when I walked by and stopped to say hi.
From South Carolina, he had an easygoing manner and boyish good looks with curly brown hair. The way he talked reminded me more of a surfer boy than a Southerner. We had both spent time in northern California, where I went to high school and he worked at a community newspaper, though we didn’t cross paths until coming to the Grand Canyon State.
On one of our first dates, he took me hunting for geodes near the Mogollon Rim, a 200-mile-long landscape of volcanic and sedimentary rock covered by pine trees, north of Phoenix. I had no clue what geodes were but, like Jason, I loved to hike.
Since then our shared love of the outdoors has fueled countless camping trips and weekend backpacking expeditions. In Georgia, we’ve become intimately familiar with parts of the Chattooga and Tallulah rivers near Clayton. We’ve explored the picturesque Cataloochee Valley in Great Smoky Mountains National Park. He introduced me to Caesars Head State Park in South Carolina, where he often trekked in his youth.
Our 6-year-old blond terrier, Wally, now joins us, flying down the trails, leaping over fallen trees.
But the injury has threatened all of that. We spend our weekends mostly at home these days.
Jason will never regain a full range of motion in his right foot. Whether or not he’ll be able to hike and backpack again is unclear. I try not to think about it.
We found several geodes that spring day in Arizona — the purple crystals inside of them glittering among the ferns. They sit now on a bookcase in our home office.
After that first outing, we spent nearly every free moment together. We hiked the Superstition Mountains to the east and went to Arizona Diamondbacks baseball games. He taught me how to steer a jon boat on Apache Lake where we fished for bass.
And when both of our apartment leases came up for renewal six months into dating, we took the leap and moved in together. It was my first time living with a significant other; my first time learning how to knit my life together with another’s to create something new.
In 2008, the Tribune’s struggles to stay afloat became painfully clear, so I took a new job in Georgia. A new start. But Jason chose not to follow and we broke up. It would be a full year until we reconnected and he finally moved to Atlanta.
I used to think of that year we spent apart as the longest of my life. Until 2013, that is.
It’s sometime after 11 p.m. and I have no idea where Jason is.
He usually arrives home before me and hasn’t called to say he would be late. Hours pass and worry turns into anger as my increasingly frequent texts and calls go unanswered. I sit on the couch in the living room of our two-bedroom Dunwoody apartment and wait.
When he finally walks in, I let fly a few choice words without thinking before he barely has a chance to close the front door. He steps out onto the balcony to cool down.
A few minutes pass before I follow him out into the sharp January air to apologize but I find myself alone. He. Isn’t. There.
My brain struggles to grasp this fact as I peer over the railing and see Jason lying on the asphalt four stories below, blood pooling around his head. I bolt out of our apartment and down the stairwell — my phone already ringing 911 as I burst outside.
That’s all I can think as I kneel beside him. He’s breathing.
The police officers arrive moments later — one pulling me away from Jason, the other rushing to his side.
I hear that second officer curse as he dashes to the trunk of his cruiser to grab first-aid supplies.
That’s when it hits me: Jason might die.
At the hospital, I learn Jason needs emergency brain surgery to remove a blood clot pressing on his brain. Surgeries to repair both of his broken ankles and reconstruct his right heel would follow in the weeks to come. A neck brace would allow his fractured vertebrae to heal during the next five months.
Doctors keep Jason heavily sedated those first two weeks in the neuro-intensive care unit at Atlanta Medical Center. His parents arrive from their home in Summerville, S.C., and we take turns sitting by his side. I nap in an old recliner the nurses track down for me. And we wait.
Jason can move his arms and legs and mutters incoherently at times. He once even tries — and fails epically — to mumble along to the Rolling Stones’ “Exile on Main Street,” one of his favorite albums, as I play it on my Kindle Fire. His mom and I giggle. It feels good to smile at least for a moment.
The signs are promising. But the nurses and doctors can’t tell us if he will make a full recovery. That, they say, will take time.
Brain injuries are unpredictable. Some people walk away from a fall or car accident with a few scratches. Others are left unable to speak or walk. Memories are wiped away, personalities fundamentally changed.
Would Jason be able to talk? To hold conversations? To read? To laugh?
Would he still be the man I knew and loved?
One of the lucky ones
Jason and I don’t know what happened the night he fell. He can’t remember and most likely never will.
His doctor had recently prescribed a new drug that had left him feeling dizzy and disoriented. We had gone back to the doctor the day before and she had given him a different prescription to fix the problem. Evidently, it had not.
I met with neurosurgeon Dr. Paul King at the hospital one recent afternoon to better understand Jason’s injuries.
Our best guess is that Jason broke his fall by landing on his right foot — the only reason he is likely alive today.
Next, he hit his head, fracturing his skull and cutting a blood vessel, which created a build-up of blood between the brain and the skull, called an epidural hematoma.
As a hematoma grows, it pushes one side of the brain into the other — putting pressure on the brain stem that runs between. If left too long, the pressure can lead to permanent damage affecting language, memory and consciousness.
Jason also fractured his C1 and C2 vertebrae located at the base of his skull where the brain stem meets spinal cord. Injuring those vertebrae can often lead to paralysis or death.
“Most of the people who fall that distance, they’re a lot worse off,” Dr. King said. “Some people just get lucky.”
I agonized those first weeks over whether Jason would be one of the “lucky” ones.
Then one day, it happened.
Jason had recently been moved out of ICU into a regular room on the hospital’s fifth floor, and his parents and I were visiting. His mom handed Jason a get-well card and he began reading it out loud. No hesitation. No struggling with words. Like it was no big deal. A big smile broke across my face, as I thought for the first time in weeks that maybe everything was going to be OK after all.
After a month at the hospital, Jason was moved to a rehab center in metro Atlanta. He struggled with short-term memory loss, especially in the beginning.
I found myself repeating the same conversations with him four, five, six times. I felt like Bill Murray starring in my own version of “Groundhog Day.” “Ned? Ned Ryerson?!”
But Jason could read and write and hold conversations. Many other residents of the rehab center could not. I would watch as one man, wearing a helmet, endlessly wandered throughout the two-story house praying aloud. Another woman in her early 30s had been in and out of facilities since she was 16. She was a passenger in a car that slammed into a tree; the boy driving walked away.
I visited Jason on the weekends, sometimes bringing Wally along. He continued to improve, so I took him to watch his favorite college basketball team, North Carolina State, play Georgia Tech. An aide from the facility drove and pushed Jason’s wheelchair when his arms tired. It felt a bit like a field trip. It felt wonderful.
Jason finally came home at the end of March, nearly three months after his fall. While his brain had largely healed, his right foot had not. He still used a wheelchair and sat on a plastic chair in the shower.
I had no clue the amount of work his return home would mean for me. At 32, I did not know what it was to be a caregiver. And just when things seemed to be getting easier, when Jason was finally starting to shuffle around on that right foot, that is when the staph infection hit.
Nurse Misty reporting for duty.
A devastating setback
Staph infections are, in one word, nasty.
They’re caused by staphylococcus bacteria, a type of germ that is commonly found on the skin or in the nose of even healthy people and often don’t cause problems. But staph can turn deadly if it penetrates deeper into the body, into the blood, joints, or — as in Jason’s case — bone.
The orthopedic surgeon removed the infected bone and tissue from Jason’s foot. Now it is up to the antibiotics, administered intravenously by me at home, to wipe out the rest of the staph.
And so I find myself on the verge of tears.
It’s after midnight on Jason’s first night home, and I’ve managed to hook him up to the bag of antibiotics but it’s refusing to drip into the tubing connected to his arm. The TV’s blue glow illuminates tiny air bubbles caught in the line that won’t budge despite my increasingly desperate attempts to dislodge them by flicking the tubing.
A home health nurse had stopped by earlier in the day to show me how to set the IV up. But this is only my second time doing it. I’m tired from having just woken up and I can’t recall all the steps.
Eventually, I call the home health agency’s 24-hour help line. I note a hint of annoyance in the nurse’s voice as she helps me troubleshoot. Finally, the IV begins to drip. Success! I wait half an hour for the liquid to finish draining, then unhook Jason and thankfully crawl back into bed.
Every six hours I have to do this — in the middle of the night, early in the morning before my workout, on my lunch break and again before trying to scrounge up dinner. And repeat.
How could the insurance company, the doctors, the home health agency — any of them — actually expect me to do this rigmarole every six hours and still work a full-time job? The thought would cross my mind countless times in the coming weeks. What if Jason didn’t have me to do this for him?
In any given year, more than 44 million people act as caregivers to their loved ones. About 60 percent of them also have regular jobs. The majority are women. They tend to have higher rates of depression, anxiety and chronic conditions like high blood pressure than non-caregivers. They typically die earlier, too.
Of course sometimes families aren’t willing to take on the responsibility.
Some patients with no loved ones to help end up in skilled nursing facilities after they’re discharged from the hospital. I cringe at the thought of Jason, who is 41, ending up in what is essentially a nursing home-type setting even for a few weeks.
I can see the physical toll caregiving has taken on me when I look in the mirror. My face is puffier from the 20-plus pounds of weight I gained courtesy of one too many fast-food meals and no time to hit the gym. New creases line my forehead from hours of worry. I’ve had to reluctantly pass over new opportunities at work.
Changing bandages, dealing with the insurance company and bills, taking Jason to follow-up appointments, walking Wally, cleaning the house, shopping for groceries, cooking dinner, spending dozens of hours in waiting rooms and hospital rooms and working full time. My list of responsibilities just seems to keep growing.
It comes at a price.
Struggling to stay strong
I curl my body into a ball as tightly as I can and burrow into my bed. The covers pulled over my head shut out the light. Shut out the noise. Shut out reality.
This is what I daydream about, where I would stay hidden if something deep inside me didn’t protest day in and day out.
So I get up.
I shower and take Wally outside. I drive to work and write and meet deadlines. I crack jokes with coworkers and order large salads for lunch at the cafeteria downstairs. I ferry Jason back and forth from doctors appointments because he can’t physically do it himself.
On good days, smiles come easily and the laughter is real.
On the bad ones, I go through the motions while my insides feel like they’re caving in. I hole up in a bathroom stall or inside my car when I can no longer hold the tears at bay. I feel like a failure.
A year after the accident, I’m supposed to be over it. At least that’s what I tell myself. Get over it already. I fear that’s what my bosses and friends and family must be thinking, too.
But I’m not even close.
All it takes these days, seemingly, is one small hiccup to shatter my world.
One Sunday afternoon last March before Jason came home, we enjoyed a nice visit together at his rehab facility. Afterward I stopped at Kroger to buy groceries for the week. I turned out of the store parking lot and sat at the light waiting to turn left, feeling pretty good about myself.
That’s when the car died and rational thought flew out the window.
Suddenly, every moment of fear and frustration and stress and pain and helplessness over the past few months crashed down on me. I let loose a high-pitched scream and broke down in tears. I felt like a lunatic and probably looked that way to drivers around me. I didn’t care.
I called Jason at the rehab center who, confined to a wheelchair and dependent on others to get him around, said he couldn’t help. I’ve never been as angry at him — or anyone for that matter — as I was at that moment. I yelled and sobbed as he tried to calm me, and finally hung up on him.
While I managed to eventually get the car running again, the incident sent me spiraling into a deep gloom for days afterward.
I still cringe at the memory. For all of the moments I’ve shown strength amid hardship the past year, it’s the moments when I’ve let anger or weakness get the best of me that stick with me the most.
Moments like when I lashed out at Jason for getting upset when I stayed out later with my girlfriends than I had promised. The moment I chose to be defensive rather than try to understand how it must feel to be at home alone, all day every day.
Moments like on Thanksgiving when I had just gotten home from running a half-marathon in 23-degree weather and Jason asked if “we” could clean up the place a bit. I yelled at him to back off without even thinking. There is no “we” anymore when it comes to cleaning the apartment, I thought to myself, just me.
Me. It’s the moments that word wins out that haunt me the most.
One step at a time
Jason’s orthopedic surgeon gently probes a section of skin above a row of stitches on his foot.
The reconstructive surgery on Jason’s right heel went as well as expected. A patch of skin is pink and slightly puffy. It could be just some normal swelling after surgery. Or it could be a sign of another infection.
Amputation, we know, is still very much a possibility.
When it comes to broken bones, shattering the heel, or calcaneus, is about as complicated as it gets. And when it breaks through the skin, called a compound fracture, it increases the risk of infection. Low blood flow in that area of the body makes the healing process that much more difficult.
As Jason’s orthopedic surgeon Dr. Daniel Schlatterer put it during a recent follow-up visit, “Everything is challenging about this injury.”
Schlatterer estimates the reconstruction will give Jason 70 percent to 80 percent of his former range of motion. We hope it will relieve some of the chronic pain. That’s a best- case scenario.
But people with Jason’s type of injury often find themselves in and out of the hospital — for years in some cases — with persistent infections. Once bone becomes infected it never really goes away. It may lie dormant for months, years or even decades and one day reappear out of nowhere — leaving us back at square one.
Amputation is the only way to make sure the infection doesn’t return, Schlatterer said. It would also get rid of the pain, and a prosthesis would allow Jason to do much more physically.
But Jason is fighting to keep the foot that broke his fall and likely saved his life.
It will be a long haul of more doctor visits, more rehab, more medications and possibly more surgeries.
What it means for our weekend camping trips and backpacking adventures, we don’t know. It’s something I desperately hope we aren’t forced to give up.
We managed to take one camping trip in 2013, a few weeks before Jason’s reconstructive surgery. When I close my eyes, I can still see the trees in all their gold and orange beauty lining the banks of the Tallulah River, shimmering in the afternoon sun.
But for now, we sit in the living room trying to wrap our heads around the challenges ahead.
It will be months before we know how much movement Jason might get back. Whether he’ll be able to hike. Camping will have to wait.
“Sometimes I think I’m just doing it all wrong,” Jason says.
I laugh, and he looks at me quizzically.
I smile and say, “I know exactly how you feel.”
HOW WE GOT THE STORY
This Personal Journey would not have been possible without Jason Massad’s willingness and courage to open up about his injury, medical history and life. I’d like to thank him not just for his honesty and candor but for his incredible support through the writing process. For Jason, who suffered significant memory lapses in the early months after his injury, this story marked the first time he learned certain details of his own recovery. He asked that I keep a couple of medical issues private, and I respected his request.
In researching this story, I sifted through hundreds of pages of Jason’s medical records and X-rays, talked with his doctors and revisited the neuro-intensive care unit and fifth floor at Atlanta Medical Center, where he received much of his care. I also must thank the team of nurses and doctors, including Dr. Daniel Schlatterer, Dr. Paul King and nurse Pat Walden at Atlanta Medical Center, who I interviewed for this story and who, more importantly, have played critical roles in Jason’s recovery. Jason and I would not be where we are today without their expertise and support.
About the reporter
Misty Williams has written about health care for The Atlanta Journal-Constitution for the past three years and has provided award-winning coverage of the Affordable Care Act and its impact on the lives of Georgians. Previously, she worked as an editor for the Atlanta Business Chronicle and covered real estate as a reporter at daily newspapers in California and Phoenix. She lives in Dunwoody with her boyfriend, Jason Massad, and 6-year-old terrier, Wally.
About the photographer
Curtis Compton joined the AJC as a photo editor in 1993 before returning to the field as a staff photographer. Previously, he worked for the Gwinnett Daily News, United Press International and the Marietta Daily Journal. He has a bachelor’s degree from the University of Georgia and won a World Hunger Award for his coverage of the famine in Sudan.