Before I'd heard of GBS; The onset by David Seaman

School had already started, I know that. Yet I had been sick for weeks. I have definite memories of those “welcome back teachers” meetings where we sit toward the back of the auditorium and listen to the new state laws and are told how we are the foundation to these children’s lives. The format for the meetings was always the same, year after year, even if the system in which you taught changed and the laws changed, as a teacher I knew that despite whatever was thrown at us I had to teach the kids anyway and what they needed to learn was not always written down somewhere and that any topic could be used to teach it. I was also aware that my temperature was still up. Alternating Tylenol and Advil for several weeks had kept it down to 101 or 102. It started, that first day in August, at 104.5. The doctor had run every test he could and finally said, “Dave, it’s a virus and there is nothing we can do but let it run its course. Call me back if things don’t improve.”

I have no memory of standing before any classes though I am told I did, including Medford High Schools Chorus, now with a membership well over a hundred twenty-five. I did not even remember calling in sick that day. I remember I was sitting in the green chair near the fireplace. It was shortly after noon I think.I opened my cell phone and called my doctor again. I don’t remember exactly what was said but I remember he told me to get to the emergency room.

And now I was lying on the floor; too weak to get up, my legs and feet not strong enough to support me, feet still tingling. My cell phone was on the table beside the green chair. I could see it but I couldn’t reach it. I had placed it there so that I could assemble the things I needed to drive myself to the E.R. The girls wouldn’t be home from school until 3:15 or so and we were all in a new house, my wife and I having separated about a month or so before. I had left my phone on the table because I was planning to return to the chair to sit as I wrote the girls a note explaining that my doctor told me to go the ER at Newton-Wellesley.

(Help, I’ve fallen and I can’t get up.) Then a smile at the commercial, the joke, the definition of a generation.

I was not scared. Just terribly exhausted. I would later learn that the real term is fatigue. Calling this fatigue is as stupid as the word depression for clinical depression, but then the word brainstorm was already taken. Exhuastion suggests that there was some kind of physical and emotional exertion, but this fatigue was not with sore muscles and heavy breathing. It was in every cell and reached into the cored of me. I thought of this for a few minutes trying to think of other words that failed to describe the truth. Now that I thought of it, brainstorm was a stupid word for calmly combining ideas in a group. I continued to ease in and out of each moment. I thought about how awful it was that one of my girls was going to come home and find me on the floor. No. Not just one. The other would follow behind. They’d both been through so much already. And I considered on whom it would be worse.

At no time did I consider that I might be dying. In retrospect it’s not that dying wasn’t possible it’s more that nature, I strongly suspects, eases us through death in the same way as birth.

I thought about the previous summer. I had missed the last three days of school, something I hated to do to my students, but my aunt lived alone in New Jersey and was having open heart surgery. I needed to be there. I thought about the production of Songs For A New World that had occurred in the midst of my sick aunt, the breakup of my twenty-two year marriage and the irritation at having to hold curtain for one particular actress each night. I closed my eyes.

St Joe’s in Paterson is considered a good hospital for those who don’t know Boston and aren’t on their way to Newton-Wellesley, a Partner with Massachusetts General, and Spaulding Boston. My aunt had gone into that surgery as healthy as I had seen her at any time. Her best friend , Jane, was around, but if not that very day, when I spent the day in various waiting areas with Wally Lambs most recent ten pound novel and a pack of American spirits, then soon enough I would see that I had taken over for her and then recalled one evening at dinner. Jane had ordered a piece of naked broiled fish, some steamed vegetables and left the carbs on her plate. The coast for that meal was about fifteen dollars. My aunt had pasta and garlic bread, as did I, and Jane said tpo her, “You know Alain you are eating yourself to death and then you’re going to expect me to sit by your side and watch you die.” As Songs For A New World had progressed we were dark on Monday. So [‘d leave the theatre after the curtain fell on Sunday night and then drive back to Boston Tuesday morning to get to the theatre in time to check front of house on sales (we sold out every performance), check the set, the instruments and the staff, warm up the cast and then I’d wait along with the rest of the company as Natalie continued to preen before the mirror in the green room. I remembered the night that I told her we were going in ninety seconds and without her, I gave the signal. The house went to black and just as the lights came up I felt her run past me. The show began with an Eb chord and then a low bass note and then Natalie needed to be down center to sing “A New World.” She made it. Only just of course but after that we never had to wait for her again. Thankfully there was no way for the show to have been extended because we had to be out of that theatre space by noon on Sunday, August 2nd.

I have a few scattered memories of the time in between that and now. But I couldn’t connect them in one line from then to lying on the floor in my living room. I’m certain my eyes were still closed and I probably went in and out of sleep. I remember helping my friend Chet paint his house. My temperature was already up at that point and in the middle of painting he got a phone call saying that his father had a stroke. Chet was not one who expressed emotion easily but I knew how much he loved his family and I tried to be what he needed from me but it turned out that what he needed was to keep painting and to move forward. There is nothing worse than waiting for a phone to ring to tell you the condition of a loved one.

During that time I had taken the girls and Kayon to the farm in New York. This was when we learned that Kayon was deathly allergic to cats. Meghan took care of him and they stayed in the camper in my brother’s yard. On the long drive back to Boston I sat behind the driver though I’ve no recollection of who that was.

The rest of that day is in my memory only in fragments. I recall being lifted - sort of half dragged- to my wife’s car by Kayon and one or two of my daughters. I can remember being put in the car. The next memory is at the E.R. I was either put into a wheelchair or fell into one. I sat at triage and was unable to explain. I asked the nurse to contact my primary care physician. How was I to explain what I was feeling? I am certain that my wife, Lauren, had told them I’d been found unconscious on the floor and she had driven me there to avoid the hospital that was subpar in our neighborhood. As I sat there an intense pain the likes of which I’d never felt started to grow in my legs and in my ass. I watched little girls with soccer injuries get triaged before me; I saw hours go by and my head grew heavier. Apparently I began to moan and make noises; the girls were responding with fear. Finally my wife made enough of a scene to have me placed on a gurney in the hallway of the bowels of the Emergency Room. I can remember the balance between the need to pass out and the intense pain. The ER was a mess as a new one was being constructed on the other side of the complex. It’s very possible that this was the last week the ER was in operation as today it is the site of the Newton Wellesley Cancer Center. At 2:05am I was taken into one of those small rooms with the curtain for a fourth wall and I remember a doctor introducing himself.

And that is the last part of reality I can remember for a very long time.

Thank you for sharing your story, Dave. How are you feeling now?

Dancermom-

Thank you for asking.

The journey of this condition has been fascinating. One thing I often say is that the only consistency about post GBS is its inconsistency. Though everyone seems to go through the illness in the same way-almost to textbook- I've yet to meet two people AFTER the fat who was left in the same condition.

I am oin dr4eadful shape. There are a number of factors. I do not know how long I can continue living as I do, but I've said any number of times that if the media got in here with cameras and reporters I would have my 15 minutes of fame, people would be shocked and government agencies would be shamed.

Fatigue is the biggest issue. I have limited energy- VERY limited. And my body tyells me when I've used it up. First a damaged muscle to the right of L4 begins to burn. Then two more damaged muscles to the left of L4,L5 flare up. I begin to have pain in th4e muscles in the shoulders there are NOT damaged by are over taxed for taking the bulk of overcompsenation. Then a neurological pain that alkways exists in my lower spine begins to exacerbate. Standing up right becomes impossible and throughout all of this my head heats up, I become flush and it FEELS as though I have a temperature. If I am NOT in bed by the time this occirs then I must endure the entire process. My head suddenly burts ikn substantial sweating, copious amountys of perspiratoion drench my hair, runs off my forhead and stings in my eyes. A handercheif doesn;t do the job . I keep a small dishtowel with me. A few minutes later, a neurological pain begins at the top of my spine. I describe it as though one has shoved 25 lit sparklers have been shoved into the brain stem. The pain is so severe that I cannot turn my head left or right.

But the real issue has to do with how limited I am. The act of writing out two checks to pay two bills will destroy me for a day. New York States IStop laws force me to the doctor every 30 days wheree I often spend less than 30 seconds with the doctor, get my class two contolled substance prescriptions and then must drive to the pharmacy and wait for 40 minutes to have them filled. This destroys me. But because of the nations fear of drug abuse and the poor direction in which education and leglslation is headed, the burden of this falls to me. I take my medications home and lock them in a safe- the key to stopping home theft of narcotics-. I can no longer do my shopping but since I am being cared for my mo0ther- who is fast approaching the age of 80- we are fighting this battle together. Neither of us can cook. I have been forced to eat cold soup or stew out of cans. I do not have the energy to deal with the red tape for getting assistance. I went to the New York State council on aging and dissability which took a masasive amount of energy. They wouldn;t help. "Go see DSS" they said. I'm not well enough to have then immediately gone to DSS. Finding a personal care assistant is very hard. I get $15,000 a year in dissability from my pension- no social security dissability and now I pay for medicare. I know I am eligible for more benefits but I am far too sick to go and apply for them.

When I must make a business call and spend half an hour naviagtiong voice jail, I end up in bed.

My conditioned has worsened over the past decade. I've discovered that when I push myself too hard (and daily exercise is critical to avoid atrophy in muscles) it puts me in bed for days. When I am able to rise again I have not returned to the level of ability I had PRIOR to the day of extended energy but rather have remained at the same level function.

There is almost nothing that can be done for me. I am lucky in that though this disease is rare and is as moisunderstood as, say PTSD, at least one can look at me and see that I am severely dissabled. People who siuffer from depression, addiction or PTSD suffer far worse than I do. The spouse or parent of someone who is sick suffers far worse than I do.

In my own book about both PTSD and the subsequent unfisnihed book on GBS, I stressed the importance of good health care for these support people as our culture disreaguards them almost as much as they disreguard themselves. So make sure that you take care of yourself. Keep in mind that ypour love for the sick person drains you far more tyhan others and is therefore not necessarily the best person to care for the sick. Particaularly if the afflicted is your child. There is no punishment worse and I guarantee that you are suffering worse than the patient is.

This is just a fraction of how my lie is different. in 2010 I was told by a panel of specialists in Boston that nothing more could be done. I have done many "tweaking" of things regarding food, meditation, pain magment, but the lack of help is something I can;t do without. I need a miracle. I need someone from "out there" to come in and take care of all of these issues. toi make matters worse, I now live in a VERY rural area so a wheelchair is out of the question, the closest doctors are a half hour drive and there are vcirtually no behavioral specialists in the area.

I still have not adjusted to the shock of how this gorge in the middle of my life has occureed and I am in my ninth year. I know that for those who are still within their first four years still have hope, still believe that this may change- and for them it may- but for me the nmovelty wore off. I am despondently lonely and even on this support group I find that most often I am the one who has had it the longest, the worst and have done the most research.

But being able to help others is good enough. I do not believe in destiny nor do I believe in an afterlife. But that does not mean I am not a spiritual person. AQnd no matter what condition one is in, there are ways to reach out and contriute to the world.

Dave

I am sorry you are still suffering, Dave. It is a really difficult reality you are living, and few people could have any comprehension of it. What a wonderful mother you have to stand by you and do her best to care for you.

It's amazing your thinking and writing are so clear-headed. I hope your day's energy wasn't used up writing your message today.

I have heard a lot about the burden medication regulations put on those with chronic illness and chronic pain. Bureaucrats who create this kind of legislation never seem to think through the ramifications.

We have a terrific patient advocate on the networks. Would you mind if I share your situation with her to see what resources she may know about that could help?