LESSONS LEARNED FROM A PARENT AND CAREGIVER

 OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

David Salet is now 32. He graduated from Miam-Dade College, then Florida International University – with a degree in public administration and political science.

In Miami, he interned at the County’s Americans with Disabilities Act Office and worked in politics. 

His current work in Montana is largely focused on speechwriting and communications for politicians that are progressive and believe in upholding and expanding the myriad laws and social safety nets that allow people with disabilities to live inclusive, productive, dignified lives.

LESSONS LEARNED FROM A PARENT AND CAREGIVER

 OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

“Missoula is very progressive. 

They do a ton of things for people with disabilities. 

Even with the harsh winters, they keep the sidewalks and crosswalks clear. 

You have to clear your sidewalk by early morning and if you don’t, the city cleans it and gives you a ticket.

That makes mobility possible,” she said.

“We are nature people. 

We hike trails all over Missoula and greater Montana,” she said. 

“Some are too bumpy, some are smooth and accessible to all. Glacier National Park has tons of accessible trails and features and it’s only 2.5 hours’ drive from us.”

LESSONS LEARNED FROM A PARENT AND CAREGIVER

 OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

“With kids, the No. 1 thing you have to do with them is when they get upset about something because they are having a rough time doing it, is showing them there are options, different approaches to getting things done,” she said. 

“Coddling, and I did that for a while, is ignoring the hurdle.”

Two years ago, after much research, Folgueiras and David decided to leave the urban madness and bad air (the city’s humidity and choked traffic exhaust is very bad for David’s respiratory issues and vocal cords) of Miami for Missoula, Montana.

LESSONS LEARNED FROM A PARENT AND CAREGIVER

 OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

Traveling is big on their fun time list, but as anyone with SCI knows, it is difficult to move to a seat – often with risky assistance from poorly trained airline or ground crew prone to manhandle rather than assist a paraplegic person with care and dignity. 

To this day, the family travels with a manual chair, because airlines are infamous for destroying and even losing expensive, essential power wheelchairs.

“Whomever is disabled, if they don’t have an advocate with a big mouth, they are in trouble,”

Folgueiras said, noting some salty language may slip into her conversation with foolish waiters and other service people who either pretend David is invisible, has the mind of the seven year old or will have his day brightened by being patted on the head and patronized like a pet.

LESSONS LEARNED FROM A PARENT AND CAREGIVER

 OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

Folgueiras also said that family members must remember that when they become a very hands-on caregiver, they cannot ignore their own disabilities. 

As an epileptic, Folgueiras knew it was essential to maintain her health. 

So she minimized the things that trigger seizures. 

Although stress and sleep deprivation can be aggravators, she found that the focus she put on managing her  career – balanced with David’s recovery/ongoing care – actually reduced her seizure episodes.

 

LESSONS LEARNED FROM A PARENT AND CAREGIVER

 OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

“Mental health is one of the things I feel that everybody in a situation like this needs,”

Folgueiras said, noting that physical adaptations at home and school are obvious, but monitoring a primary caregiver’s mental well-being is just as important. 

You have to have someone to talk this stuff out with.”

“(The parent of a newly-injured child goes through) a lot a suppression. 

You squash down your feelings because you don’t want your child to see you hurting,” she said. 

“My doctors told me I had to get rest. When I left the hospital at night, that killed me.”

LESSONS LEARNED FROM A PARENT AND CAREGIVER

 OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

Folgueiras’ chief advice for the parent of a newly-injured child is to start modifying the family home while the person is in rehab – not waiting till the day they come home. 

She was fortunate that the Brain and Spinal Cord Injury Program helped with putting in a ramp, accessible bathroom fixtures, widening doorways and installing a track on the ceiling to hold a harness that allowed David to move about and into the shower.

David went to Miami-Dade Public Schools with an assistant who attended all of his classes and remains a close friend to this day.

LESSONS LEARNED FROM A PARENT AND CAREGIVER

 OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

Folgueiras, who added licensed massage therapist to her health care resume, always had respect for the medical field.

But her experience with negativity and ableism hurt her deeply at a time when she was most vulnerable.

“They told me several times he wasn’t going to make it and if he did, he’d be a vegetable that won’t know who I am. 

A female doctor, supposedly top in her field, told me to my face that I need to face the fact that I’ll be bringing home a vegetable,” she said. 

“I’ve worked in the medical field. 

You are frank, but you don’t talk like that. 

You have to have empathy and compassion.”

LESSONS LEARNED FROM A PARENT AND CAREGIVER

 OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

The hour-plus wait between impact and arrival at a hospital robbed David of the “golden hour,” the precious time to immediately treat brain trauma and spinal cord injury (SCI).

Thankfully, the passenger in the car that hit him was an ICU nurse and a group on a fishing outing nearby happened to be composed of physicians.

“He was life flighted. He had to be revived three times. 

He was in a coma for a month. He was in rehab a couple more months,” Folgueiras said of her precious little boy.

“He had spinal cord bleed. 

He was deprived of oxygen. 

He has respiratory and other issues.”

LESSONS LEARNED FROM A PARENT AND CAREGIVER

OF AN INDIVIDUAL LIVING WITH SPINAL CORD INJURY

Ivette Folgueiras’ career as a medical assistant – first in geriatrics, then pediatrics – and involvement in Florida’s Brain and Spinal Cord Injury Program exposed her to the caregiving and advocacy roles of family members of people with disabilities.

Her son David’s nearly-fatal accident at age 10 – causing both C-3 spinal cord and brain stem injury – put her into the driver’s seat of dogged advocate and support system.

A bright, football-playing 5th grade Miami boy, David was on a fishing trip with his uncle deep in the Everglades in rural Collier County. 

The boy darted into the road. 

The impact with the vehicle nearly killed him. 

THE RECOVERY -- PART 13

ESSAY BY HEIDI JOHNSON-WRIGHT

I was referred to Dr. P, an anesthesiologist, in yet another attempt to find a solution.

A pleasant, unassuming man, he made no guarantees but promised to do his very best to help. 

In a three week period, I went to him twice.

Both times, I lie prone in an out-patient O.R. suite, while Dr. P. and his team looked into my pelvis and groin with a fluoroscope.

Using a nerve stimulator, he located the place to inject me. 

The whole process took less than 30 minutes and hurt less than a flu shot.

Within two weeks of the second injection, I returned to swimming twice a week.

I was able to increase my walking to multiple 100 feet treks each day. 

And the worst of the blasted pain was gone.

It’s been nearly 18 months since my surgery.

I have very nearly reached my goal to return to the same level of activity I was capable of prior to getting a new hip and femur.

Make no mistake: my sciatic nerve still occasionally lets me know that it can be a very nasty SOB.

But I have gotten my life back. 

And there are still so many bullrings to explore.     

Heidi Johnson-Wright is an attorney and ADA professional. She lives with her husband in the Little Havana neighborhood of Miami, FL.

THE RECOVERY -- PART 12

ESSAY BY HEIDI JOHNSON-WRIGHT

I tried everything possible: PT, rest, electrical stimulation, massage, heat, ice, and meditation.

I took Vicodin round the clock.

Nothing worked and nothing mattered, as I grew more morose. 

Each successive pain management doc had a different theory.

I heard: “This was a big surgery; it will take a year to come back from it.” 

Or “It’s only been three (four, five, six, seven) months since the surgery. Be patient.”

On my office wall, I had a photo that my husband had taken of me in the bullring in Ronda, Spain on a trip four years before. 

There I stood in my best cocky matador’s pose, full of life. 

Superimposed over the photo were lyrics from a song by David Sylvian:   

“Life is a bullring for taking risks and flouting rules.”

Now each time I looked at the photo, I fought back tears. 

The woman in the photo seemed like a stranger. I simply could not imagine ever feeling so joyful again. 

RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 13

THE RECOVERY -- PART 11

ESSAY BY HEIDI JOHNSON-WRIGHT

My leg was still very weak, but I knew this would improve. 

At last, it seemed that my life was on the road back to normal.

Then Thanksgiving came, and it was as if a trap door had opened and I fell straight into hell.

The next four months were a blurry nightmare of unrelenting pain. 

Some days it felt like battery acid on the back of my thigh, or I was being Tasered in the groin.

Other days a sickening achy, pulling sensation took center stage.

What never varied was the intense pain every time I stood or attempted to walk. 

Prolonged sitting brought on more pain.

I was only comfortable lying flat on my back with my legs elevated on a pillow.

My life was reduced to a miserable slog of trying to get through each day.

I constantly strategized so I could minimize any amount of weight bearing.

Months before at the rehab center, I could walk over 100 feet at a time.

Now I could barely manage 10 feet. 

RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 12 

THE RECOVERY -- PART 10

ESSAY BY HEIDI JOHNSON-WRIGHT

By my second full day, I walked about 30 feet. 

By discharge day, I could walk 130 feet at a stretch.

I was sent home with a customized platform walker, PT orders and prescriptions. 

My husband took me out for Chinese food on the ride home to celebrate.

For the next couple weeks, I worked like a dog each day on exercises.

My hope was to return to work in five or six weeks.

All was going well until about a month after the surgery, when excruciating muscle spasms and nerve pain came out of the blue.

I had suffered with musculoskeletal pain for 30 years, but nothing could have prepared me for this load of bricks.

My surgeon confirmed that the bones were healing very well, but the pain was likely the result of his lengthening my leg about a half inch. 

The muscles and nerves were being required to serve a longer leg, and were temporarily rebelling.

He gave me muscle relaxants and a nerve med.

I was much better in a couple weeks, and eased back into a full-time work schedule.  

SAY CONTINUES TOMORROW -- FEBRUARY 11

THE RECOVERY -- PART 9

 ESSAY BY HEIDI JOHNSON-WRIGHT

That first evening in my private (!) room was heavenly. 

I took my first shower in eight days. I used a toilet instead of a bedpan.

I sat up in a chair while I ate a decent meal. I lay down on soft, clean sheets and watched Animal Planet.

I worked harder than I ever had over the next week. 

My day was rigidly scheduled from 6:30 am until 5 pm every day but Sunday.

I quickly learned that treatment protocols for joint replacements had changed considerably over 30 years.

As a teenager, I had to lie flat on my back for an hour after each hour I sat up because of concerns about swelling at the surgical site. 

For the first month after surgery, it was one hour up, then one hour down, over and over again. 

But now, the rehab staff had me sitting up all day long, regardless of how much my leg ballooned up by day’s end. 

One thing that hadn’t changed: I could sleep only on my back for six weeks, a miserable situation for a side sleeper. 

RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 10

THE RECOVERY -- PART 8

ESSAY BY HEIDI JOHNSON-WRIGHT

I was expected to start weight bearing just a couple days after surgery. 

The hospital’s PT staff was unable to bring me the type of walker I needed to attempt to stand, despite my daily entreaties. 

Three days after surgery, a PT somehow persuaded me to walk a couple steps with nothing to take the weight off my legs but holding his hand. I’m not a bragger, but I guarantee even Dick Butkus would have wept like a baby from the amount of pain it brought me.

I knew it was hospital discharge day because that’s when the maintenance staff fixed the A/C in my room. 

The rehab facility had everything the hospital did not: highly skilled PTs, OTs, and nurses who knew how to care for hip patients, quality cable TV and functioning A/C with a thermostat I could control! 

RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 9

THE RECOVERY -- PART 7

ESSAY BY HEIDI JOHNSON-WRIGHT

Those seven days in the hospital were perhaps the longest of my life.

As the senior orthopedic resident said to me: “Consider this surgery a hip replacement, times two.” 

Twice the pain, twice the rehab effort, twice the recovery time. 

To even sit up on the side of the bed filled me with horrific, nauseating waves of pain.

It took one person to lift my torso into a sitting position while another held my leg and little by little, lowered it to the floor.  

Compounding the misery was the hospital’s -- how can I put this? – less-than-stellar quality of care. 

The A/C in my room barely functioned during sweltering August Miami days.

 Nurses repeatedly failed to support my leg while getting me off the bedpan, allowing it to slam back down onto the mattress.

I needed a special chair to sit in when I got out of bed. 

What they brought me was a glorified bar stool that 4 foot, 10 inch me would have needed a ladder to reach. 

RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 8

THE RECOVERY -- PART 6

ESSAY BY HEIDI JOHNSON-WRIGHT

When I began to awake some six hours later, I was preparing myself for the worst: that the doc would tell me my femur had completely shattered in the process of him removing the old prosthesis. 

Perhaps he had simply shored me up best he could, but that further surgeries were needed, and I may never have a functioning hip joint again.

But the news was good. While my femur was as thin as a sheet of paper in places, Dr. T had gotten out the old prosthesis, implanted the new one, reconstructed half of my femur and part of my pelvis, and carried out the necessary bone grafting.

Now it was a matter of healing up enough in the hospital so I could then go to an in-patient rehab facility.

RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 7

THE RECOVERY -- PART 5

ESSAY BY HEIDI JOHNSON-WRIGHT

After a few X-rays, Dr. T announced the verdict: the left hip prosthesis was pushing outwards from my femur to the point where it would inevitably fracture the bone. 

Maybe not today or tomorrow or next week, but it would most certainly happen.

And if it did, it would make a hip revision much harder to do. In short, if I didn’t have the surgery soon, I would be in a much bigger world of hurt than I had ever bargained for.

Six weeks later I found myself sitting on the edge of an operating table, dopey and propped against the shoulder of an O.R. nurse, while someone from the anesthesia team attempted to insert a needle through the calcified ligaments of my lower lumbar region.

 RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 6

THE RECOVERY -- PART 4

ESSAY BY HEIDI JOHNSON-WRIGHT

This appointment, however, was different.

In his most fatherly, reassuring voice he made it clear that it was time to consider a revision of the prosthesis in the left hip. 

Since I had chosen my doc because of his reputation as an experienced “revisionist,” I figured I was in good hands. 

That was until he told me that my arthritis-ravaged anatomy and thin, decalcified bones were too big a challenge, even for him. 

Which is how I soon found myself in the waiting room of Dr. T.

Doctor J. had spoken of Dr. T. in hushed tones of reverence, a pioneer in the reconstruction of joints ravaged by cancer or severe arthritis.

He pioneered a procedure in which he handcrafts a customized joint to each patient.

I figured that, when I finally met him, there would be cherubim and seraphim fluttering around him, shielding his face from the gaze of mere mortals. 

But he was just another guy, although a very tall and large-framed one, built like a college football linebacker, as so many of the best human carpenters are.

RECOVERY ESSAY CONTINUES TOMORROW -- FEBRUARY 5