My Last Wave

By David Fessler
September 27, 2024 | VOLUME 2, ISSUE 3

I believe there are two kinds of people in this world. There are those who look at life as a glass half-full and those who look at life as a glass half-empty. I’ve always been in the first category. That’s a good thing because life as I knew it took an unexpected and shocking turn 12½ years ago.

At the time, I was a speaker at an investment conference being held in Nicaragua. The day before the conference began, two of my colleagues and I decided to do some bodysurfing in the Pacific. My last wave flipped me upside down and slammed my neck onto the sand. I was immediately paralyzed.

I had suffered a devastating spinal cord injury. After initial treatment at a small medical clinic about a mile from the beach, I had a military helicopter ride to a hospital in Managua. Soon after, I was flown by a medical jet back to Allentown, Pennsylvania, where I was met by my wife, Anne.

The neurosurgeon wanted me to immediately undergo a surgical procedure called a laminectomy. She said it would allow my spinal cord to expand and restore blood flow to the affected area of the cord (C3-C6).

I spent 9 days in the ICU. It wasn’t clear at that point if my spinal cord injury was complete or incomplete. After 4 days, all I could move was the big toe on my right foot. My prognosis wasn’t looking good.

After researching the various rehabilitation options for spinal cord injuries, we decided on the Good Shepherd Rehabilitation Hospital in Allentown. It was there that I began 7 weeks of rigorous physical and occupational therapy.

Therapy was difficult and painful. Even the simplest task was incredibly hard. It was about this time in my recovery when I began to realize the enormous challenge I had ahead of me. My doctors, therapists, and nurses became my new best friends.

Transitioning to home care was a daunting prospect. At Good Shepherd, care managers are assigned to every patient and their families facing this transition. They were extremely helpful to Anne and me as we got used to continuing my recovery at home. While I was inpatient, friends of mine got together and built a wooden ramp that would allow me to easily access our home.

Some of my inpatient nurses gave Anne their cell phone numbers in case she had any issues caring for me. We ended up calling one of them for help at 2 am (she was on duty in the hospital at the time). That kind of support was priceless to both of us.

My physiatrist, Dr. Sandeep Singh, has been extremely encouraging and supportive over the last 12 years. We know each other on a first-name basis. Any time I have an issue, I can either get him on the phone or see him within a day or two. Dr. Singh, as well as the other physiatrists on staff at Good Shepherd, explain any issues and treatments in detail. That’s a comforting feeling when dealing with traumatic injuries like mine.

My biggest challenge was, and still is, regaining functional use of my hands. With much work, I have regained significant movement in both my arms and legs.

Challenges and frustrations

You might think that navigating the health care system with a disability would bring significant challenges. But, in fact, that hasn’t been the case for Anne and me. I still see Dr. Singh from time to time, along with my primary care physician. We are fortunate to live in an area with several great health care networks in addition to the Good Shepherd Rehabilitation Hospital.

Other aspects of life, however, do come with new restrictions.

If you think air travel is difficult these days, try doing it in a wheelchair. My caregiver and I could always get seats right behind the first-class bulkhead, which gave us more legroom. But I was always the last one off. And, occasionally, baggage handlers would send my wheelchair to baggage claim instead of leaving it at the ramp for me.

Another worry was whether the Uber I ordered would be one I could get in and out of. Several drivers simply cancelled my trip when I messaged them that I was disabled, but most were very helpful and accommodating. Finally, while most hotels offer “handicapped” rooms or suites, some are not very wheelchair friendly.

Restaurants vary in their accessibility, too. In some cities, if they are old enough, restaurants are exempt from having to provide handicapped access. I’m not sure how they get away with it, given the Americans with Disabilities Act is a federal law that applies everywhere.

I’ve had to access some dining areas through back doors that led me through busy kitchens. Once, I had to wait while kitchen staff removed a door to make the opening wide enough for my wheelchair. That gives the term “making an entrance” a whole new meaning.

Most of my friends and family have homes I can no longer get into. That really limits where and when I can spend time with them. This can lead to feelings of frustration, isolation, and powerlessness at times.

I do enjoy social situations with 1 caveat: Everyone needs to be seated. Since I can’t stand up, I’m often “talked over” by those around me. I know they’re not doing it on purpose. They just aren’t aware how critical direct eye contact and ease of hearing are when having a conversation. I sometimes end up tuning out until someone sits down near me.

Paying it forward

Despite all my challenges, I know I’m one of the lucky ones. I’m blessed with great resources, networking connections, and family support. And that’s why I’ve enjoyed opportunities to be an advocate for other disabled individuals.

I’ve accomplished this on several fronts. I’ve counseled other patients with spinal cord injury at our therapy hospital. I’ve also counseled several parents of young patients. I’ve spoken at hospital fundraising events and at one of the local middle schools. It’s rewarding to be able to use my experiences to help others facing these same challenges and raise the awareness of the population at large.

I’m currently in my third term as a member of the Board of Trustees of the Good Shepherd Rehabilitation Hospital, where my recovery began. As the first patient with a spinal cord injury to serve on the board, I’m honored to bring a patient’s perspective to the board and the administrative staff. And I know how critical that is.

I’ve been able to affect a number of changes that have improved the hospital for both patients and staff. Our hospital needed some sprucing up following COVID staffing shortages. For instance, I targeted changing rooms and elevators, since new and prospective patients see those first. Our parking garage had some lights that weren’t on after dark when staff and patients were leaving. The staff freely share concerns with me, knowing I’m not shy about taking issues to the board or CEO. I’m currently working on improving the transportation options for patients with wheelchairs who need van services to get to their therapy and doctor appointments.