Patient Stories

By Brian O’Connell

May 23, 1998, I was preparing for my last cross country commute, ending an era that started six years before, when I was hired into my dream job, as a pilot for a major US airline. With a three year layoff, two years of a coast to coast commute and the hardships it placed on my young family, I thought the tough times were over. I had finally received a long awaited transfer from Miami, to being based in Los Angeles, 20 miles away from our newly purchased home.

As I prepared for that last commute to Miami, there were subtle signs that something was not right, tingling in my fingers and toes, I did not feel right. This I shared with Kim, my wife (and Registered Nurse) of seven years and said goodbye to her and our three children (ages 3, 2 and 6.5 months) but left for the airport anyway. Who could imagine the months of hardship I was to lie upon her.

In Miami that night, I struggled getting my bag out of the overhead. Passengers that I weaved through and passed in the terminal last week, were now leaving me behind as I made my way to my crash pad (commuter apartment). I gave up on sleep at 4 am, and took a taxi to the closest ER.

As I described symptoms to the attending neurologist, head nods and poignant questions gave me hope for a quick diagnosis. “A simple lumbar puncture” would verify Guillian-Barre Syndrome. It took me all day to say it correctly; I needed to communicate clearly with Kim.

At the time, the phone call to Kim was easy. “Hi! I am in ICU in Miami, they say I have this Guilligan’s Bard disease, something like that. Doctors said I’ll be fine and most people who get this recover.” It was early in the conversation when the neurologist took the phone to have a professional medical conversation. He wanted to make clear to my wife, the potential depth of my decline.

The physical decline was breathtaking, literally. Vibrant to ventilator in a matter of days. Within a week, I was totally paralyzed. The ICU staff would tape my eyes shut so they would not dry out, and perhaps aid in getting the sleep that never came.

Tracheotomy, ventilation, collapsed lung, pneumonia, ICU psychosis, my body revolted. IVIG and Plasmapharesis treatments did nothing to stop the progression. My runners resting heart rate of 50 now raged incessantly at 120. My weight fell from 170 to 122 pounds. The nerve pain that enveloped my body cannot be described. I was physically broken. How soon would my mental state follow?

Six weeks in ICU thousands of miles from those you love. 12 weeks in a rehabilitation hospital enduring humiliating therapy. Then, when I showed no improvement, they sent me home, sharing a home with a de-facto single mother, and three kids underfoot. Home to a hospital bed I could not rise from and a wheelchair I could neither transfer to nor propel. Unable to do anything for myself, feeding, bathing, hygiene, it looked bleak. “I thought they said I would get better!!?” Two more months of burdening my family and the full recovery seemed impossible.

This could easily have been the story of a life free falling into obscurity. A story of demoralizing pain, suffering and deterioration.

Often in struggles, there are heroes, and I had more than my fair share behind me.

These are my many GBS Heroes, and a few words about their extraordinary efforts assisting and supporting me and my family in its darkest hours.

Kim Hanley O’Connell. Following my phone call from ICU, Kim assumed the role of crisis manager. She solicited and received child care for our 2 and three year old boys from her sisters, Kathi Hanley Mais and Kitty Hanley Campuzano.

Kim contacted my employer and flew to Miami with our six month old nursing daughter to be at my side and advocate on my behalf. The value of her bedside visits in the ICU cannot be adequately expressed.

Dr.William and Sheila Hanley. My parents in laws were on a cruise vacation when they heard of my illness. They dropped everything and disembarked from their vacation to assist, first in Miami, and then in caring for our two boys in our home for the six weeks I was in ICU. What a stress relief to know that your children are receiving such wonderful care during a long absence. Papa, we miss you dearly. My boys will always cherish the memories of their walks to the doughnut shop with their Papa.

Kathleen and Mary O’Connell. My sisters Kathy and Mary O’Connell were with my Father on a visit to his home country, Ireland, when they heard I was hospitalized. They departed early, rebooked their return trip through Miami to assist with the care of our daughter. This allowed Kim to spend time with me in the hospital and my advocate for my medical care. Also assisting with this care were my Airline and US Air Force colleagues and friends Beebe O’Neil, Chris and Beth Austin, Lorraine and Randy Southgate, and Ed Contreras.

Meanwhile, at home on the west coast, our friend Lisa Mais started and solicited funds for a trust account benefiting long term care I would require in the future. I am independent and proud person. This was one of the most difficult things for me to accept at that low point in my life. Looking back in hindsight, the true value of Lisa’s work and the kindness and generosity of all my friends and family overwhelms me with gratitude. To those who supported Lisa in her efforts, I will never forget your generosity.

After six weeks in a Miami ICU, my employer provided me with an air ambulance to my home in Long Beach, CA. I was transferred to an in-patient rehab hospital. I just so happened, and I do not think by accident, that my hospital room was nearly adjacent to the office of my sister in law, Kathie Hanley Mais, RN. Kathie would stop by my room, on her lunch break, and before and after her shift and make me shot-gun (force-feed me) an Ensure, hoping I would regain some of the lost pounds. Kathie was a constant advocate for me at the hospital.

After a three year layoff and only three years on the job, I had very little sick leave accumulated with my airline. My airline had a program that allowed my colleagues to donate vacation time toward my sick bank. It was entirely voluntary, and as a commuter, I honestly did not have that many coworkers in Miami that I would consider to be close to.

My fellow pilot’s response was nothing short of astounding. My accumulated sick leave lasted less than two months, but my fellow pilots insured I did not miss a paycheck for my entire two year sick absence. The truly amazing part was, when I was well enough to send thank you notes to the donors, I recognized only a few of the over forty pilots that donated to my recovery. How selfless to donate your vacation to someone you do not even know.

I must extend a special thanks to my friend, colleague and fellow USAF Reserve Pilot John Reed, who donated his entire two vacation weeks to me.

My brother in law, and source of constant entertainment, Phil Dostalek designed and installed a wheelchair ramp at my home. Although it was engineering wonder, I always looked forward to its destruction. It was a triumph for me to put on my orthotics, and with an 8 pound hand sledge in one hand and my walking cane in the other, lay waste to the ramp Phil had built. My young boys would miss their “hotwheels” race track, but good riddance for me.

To my brothers in arms from March ARB, 729th ALS and 730th ALS Warriors, who somehow allowed me to continue to serve my country and eventually retire from the Air Force, especially Col Bill Marshall, LtCol Greg Pfieffer, and Col Pamela Prete.

I must also recognize all those who visited me in the hospital, or called me and provided words of encouragement, distraction and entertainment. There are simply too many to mention, but you are all my heroes.

Tomorrow is the 20 year anniversary of that ill-advised last commute to Miami which began the biggest challenge of my life. Thank you to all my Heroes that delivered me to the other side.