Tag Archives: GBS

My Summer – Part One


This year, I struggled through a difficult spring into a terrible summer. It often seems bad things happen in bunches, and this has been my year for one of those bunches. In April, I experienced a painful outbreak of shingles. I live a floatplane ride away from a doctor, and it costs approximately $2000 for me to make a quick visit to my family practitioner, not counting the cost of the doctor’s appointment. I have to charter a plane both ways, rent a car, and usually stay in a hotel for at least one or two nights. When I face such an expense, I must stop to consider whether a trip to the doctor is really necessary. When I broke out with shingles, I decided I could not get to the doctor in time for the anti-viral medication to be effective, so I felt there was nothing a doctor could do for me.

The shingles virus raged inside my body. At times, I felt as if I had broken a rib and at others I swore I had pneumonia or was suffering a heart attack. The stabbing pain in my side was the most intense, and it was relentless. At night, I could find no position in bed where my body did not scream in pain, and I usually curled up in a chair for an hour or two of restless sleep. I am certain those of you who have had shingles understand the pain I am describing.

I foolishly thought once the blisters from the rash healed, I would recover. Unfortunately, though, the pain only seemed to get worse. In late May, we took our boat to town to have work done on it, and I saw my doctor who prescribed a medication to help numb the nerve pain. She also informed me the pain could last for several months or years, and I decided I’d better learn to live with it. Luckily, the medication did help, and the pain lessened.

In late June, I flew back to Kodiak to help my husband bring our boat home, an eight-to-12-hour voyage, depending on the weather. When we got back to our lodge, we were very busy getting things ready for our summer, tourism season. We are building a new cabin, so I spent my days painting walls. I also painted the long board-walk skirting our cabins, and I did yardwork and tended my garden. I could tell something wasn’t right with me, though. After we returned from town, I felt tired and blamed it on the very busy two days I’d spent in Kodiak. Then, I began to notice how difficult it was for me to walk up the hill from our dock. A few days later, I was startled when I could barely climb the stairs to a storage room. My left leg refused to work. Soon, I noticed weakness in my right leg and both arms. When I began to feel intense tingling in my hands and feet, I knew I had a neurological issue.

At first, I denied I had a medical problem; the last thing I wanted to do was fly back to Kodiak. Finally, two days before our summer season was to begin, I had to be helped onto a floatplane for the ride to town. My plan was to see the doctor and fly home the same afternoon.

I at first stumped the doctors in Kodiak, but when they consulted a neurologist in Anchorage, they came up with a possible diagnosis of Guillain Barré Syndrome (GBS). They explained to me that my immune system got confused while fighting shingles and turned on my nervous system, stripping myelin from my nerve sheath. GBS can be dangerous and in an extreme case, an individual has difficulty walking in the morning, and by afternoon, her entire body, including her chest wall, is paralyzed, forcing her to be on a ventilator just to survive.

Doctors in Kodiak wanted to medevac me to Anchorage, but I assured them I could get myself on the jet to Anchorage and to the hospital once I arrived there. Further tests at Providence Hospital in Anchorage confirmed I had GBS, and the neurologist recommended an infusion of immunoglobulins each day for the next five days. Meanwhile, physical therapy could work with me to determine if my symptoms were getting better, staying the same, or worsening. The usual progression for GBS is to worsen rapidly and then stay steady for a period before slowly improving. The neurologist explained it would take a year for me to recover, but nearly everyone who has GBS recovers completely.

I felt thankful to receive treatment and to know I had something from which I would recover. I hated not to be home to finish the hundred little chores I wanted to do before our summer season began, but I knew my husband, Mike, and our brilliant cook, Mary, would have no problem starting our summer season without me. I especially regretted I would not be at our lodge to greet our new, young camp helper, Emily, but Mary assured me she would orientate Emily, and they would do fine.

I sat back in the hospital bed and watched the infusion drip down the tube and through the needle into my veins. All would be okay; I would get through this. I reminded myself repeatedly that it could be worse. And then it did get worse – much worse.

On my last day in the hospital, I decided to call my brother, Russell, his wife, Melanie, and their son, Nick, in Kansas. I am very close to my brother, but we usually communicate by e-mail, mainly since it is nearly impossible for me to make a telephone call from our remote lodge. I decided to call him from the hospital, though, because I knew he was worried about my condition, and I wanted to assure him I was recovering and would be okay. I reached Russell and had a nice conversation with him and his family. Then, according to Melanie, after we disconnected, Russell decided to mow the grass in 100⁰ heat.

Melanie called me back at the hospital just as the nurse was starting my final infusion and gave me the horrible news. Russell had suffered a heart attack and had died while mowing the grass, little more than an hour after I had talked to him.

My world crashed down around me at the news of my brother’s death. I couldn’t believe such a strong force and one of the most important people in my life could be gone, and I stupidly kept thinking he couldn’t possibly be dead because I just had talked to him. I worried about Melanie and Nick and what they would do without Russell. I know Melanie is strong, but they were a unit, and I couldn’t imagine her without him.

The following morning, the doctor released me from the hospital. I took a cab to the airport and made my way from the entrance to my gate, shocked by how slowly I walked and exhausted I felt. It had been too foggy for planes to land in Kodiak for the past two days, but I was lucky, and the fog lifted just before my flight.

In Kodiak, a van whisked me to Andrew Airways, and soon, I was in a floatplane flying home. I felt numb and very tired as we skirted emerald mountains, plunging waterfalls, and deep valleys formed by glaciers and cut by rivers. All I cared about was getting home and curling into a ball with my cat to lick my wounds. I knew I would cherish my last conversation with my brother and would always be grateful that for whatever reason, I had placed the call to him only an hour before he died. I knew I wasn’t well enough to be much help to Mike on our summer trips. My usual job is to work on the boat as a wildlife-viewing and sport-fishing guide, but now I wasn’t even sure I could crawl onto the boat. One day at a time, I told myself. I would improve.

As we circled our lodge and came in low for a landing, I looked at our dock and nearly burst into tears. There stood Mike, Mary, and Emily, and Mary held a beautifully designed “welcome home” sign for me. With their help, I stepped off the plane and hugged each of them. Even Emily, who didn’t yet know me, gave me a big hug. I’ve never been so happy to be home in my life, and yes, my cat allowed me to cuddle beside her while she licked my hand, and I took a nap.

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Next week I will tell you about what my life has been like since I returned home, and I promise that post will be full of stories about healing, wildlife and wonderful guests.

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