Guillain-Barré syndrome

I was out of work in 2003 when I took a job at the Tulsa County Jail, then operated by Corrections Corporation of America (CCA), as a Corrections Officer. After going through a couple of weeks of training and then spending a few more weeks managing with a pod of about 80 inmates, I contracted Guillain-Barré syndrome (GBS). What that did was leave me totally paralyzed from my shoulders down, where I was unable to walk, stand up or even feed myself.

The syndrome took only a couple of days to progress from my having difficulty standing to my being completely unable to walk. The first day I went to my family doctor, who was out of the country and had been replaced with a substitute who told me just to stay home for a couple of days and it would pass. It did not. The next day I could not walk at all and my son Evan took me to the nearest hospital – St. Francis in Tulsa, at which my physician was not associated, where I was admitted. By going to the wrong hospital, I was fortunate that one of the doctors at St. Francis had seen GBS and figured that might be what I had.

After making a number of tests on me, the doctors at St. Francis began treating me with high-dose immunoglobulin therapy, a treatment that cost $30,000. Even after those treatments, I was told that I would need several months of rehabilitation to learn to walk and to train my arms to be able to feed myself and to write again. While this may sound similar to my brain injury in 2012, there were several differences. With GBS, I could not move my arms or legs, but I did have full use of my brain, including my memory.

Early in my stay at St. Francis, while I was being treated with immunoglobulin, a group of students or interns or something came to me wanting to help me exercise, apparently unaware that I could not stand up at all. They helped me out of the bed and I immediately fell onto the floor. The hospital then brought in a lift device to get me up and back into bed. As a result of this incident, I was taken to ICU for 24 hours. They never explained to me why this error in management happened to me.

After my treatments with immunoglobulin ended, I was moved into a hospital room at Broken Arrow Rehabilitation, which was within the same buildings as St. Francis Hospital. I was in rehab there for speech therapy, physical therapy and occupational therapy. At first, being confined to my bed, I was not able to get myself to the bathroom. I was dependent on the nursing staff to respond to the call-nurse device and come help me. Sometimes they were pretty prompt and it would only take two or three minutes for them to move me to one side of the bed while they stripped half the bed and replace those linens and then move me onto the other side while they replaced the other half of the bed linens. But they were not always so prompt. Several times I was unable to wait for them to come help me, so I devised a way to control that. I was strapped to a heart monitor to make sure it was still beating, so I learned that if I unfastened that, the nurses would immediately come running to see what was wrong.

During my first few days at Broken Arrow Rehabilitation, my OT therapist would came in each morning to get me dressed. At some point I’d pretty much decided that I kinda liked being cared for so well and would like to just stay in that condition. So my therapist came in, tossed some clothes on my bed, and told me to either learn to dress myself, or resign myself to being a vegetable for the rest of my life. I was astonished. I could not sit up and could not even reach the clothes he had left me. I flayed around for a day or two, but eventually managed to get some of my clothes on. Within a week, I could dress myself and was exceedingly grateful to that therapist for forcing me to get real.

When my OT therapist made me learn to start taking care of myself, I was listed on the schedule as probably being confined to BAR for another two months. After his influence I began really working hard to get better and was able to leave the hospital in just under a month. I still had several more months of rehab ahead of me, but I left Broken Arrow Rehab with my head held high.

How I met Whoopi Goldberg

I was an early adopter of home computers and their use in communicating “online.” I got my first modem about 1985 and built my first online bulletin board system (BBS) by 1989. In 1995 I created my own website, which was little more than a collection of my favorite internet bookmarks. This was how a lot of the early websites began. I soon tired of just publishing my links, and started looking for what I wanted to create online that would be of interest to others. Offline I already had an interest in actress Karen Allen (Animal House, Raiders of the Lost Ark, etc.), so I created a site about her movies, TV appearances, biography, photos, etc. By 1998 I had bought the URL ACME Web Pages (originialy acmewebpages.com, now acmesebpages.net) and created sites about Karen – (Karen Allen: An ACME Page), the LA Dodgers (ACME Dodgers), the movie Animal House (ACME Animal House), and Whoopi Goldberg (ACME Whoopi).

About the same time – the late 1990’s – Whoopi introduced whoopi.com (which no longer exists). After paying someone for a very glitzy website, Whoopi (or more likely, Tom Leonardis, the President of Whoop, Inc), liking my ACME Whoopi site, hired me to design a simpler, more functional site combining my ACME Whoopi with her whoopi.com. I built and maintained it for about a year, until her reaction to the 9/11 attack caused her to abandon the net for a decade. I was hired November 2000 and spent four or five weeks combining the two sites and adding several new features, and finally went live with my version about January 1, 2001. Interstingly, I also lost my day job in 2001 because of the 9/11 attack – I worked at American Airlines and was let go because I was the low man in the department, so when Whoopi took down her website in October of 2001, we had no way to pay for our home in Oklahoma and my wife Jean had to return to working full-time.

Things went quite well while I was webmaster, well enough that she decided to bring me to California to help with a new project. Whoopi had hosted the Academy Awards ceremony in 1994, 1996 and 1999, but was not hosting the show in 2001. The 2001 Oscars were hosted by first-time host Steve Martin. Instead, Whoopi decided to create an alternate Oscars ceremony online in her Los Angeles office.

For this webcast I built a feature on whoopi.com where fans could guess the Oscar winners for Best Picture, Best Director, Best Actors/Actresses and Supporting Actors/Actresses. I also built a software tool to quickly organize the entries and identify the winners. Whoopi flew me 1st class to join her in her offices for the webcast. She selected items for the winners to receive – autographed items like glossy 8 X 10s, books, DVDs, etc. – after the end of the webcast. I quickly determined who had won (actually two people had gotten all the answers correct) and sent them emails letting them know they had won. But overall, I was able to spend several hours with Whoopi and her associates at Whoop, Inc.

It was one of the best days of my life!

The next few days: the prequel

Shortly after my previous post about how I became brain damaged, received the following response from Alyson Abel Mills, a co-worker of mine at Callier, who was walking across Inwood Road when I was hit by that car. Here is her memory of that morning:

“You and I were crossing the street from the bus stop. As always, we had pushed the button for the cross walk sign[al] and waited. We didn’t start crossing until the light changed. You and I were talking so we were walking close together. I know you were on my outside (right side) and think you were a few feet in front of me. The next thing I remember was you being hit by the car which came from behind us, turning left [northeast] onto Inwood from UTSW [Southwestern Medical Ave.].

“You bounced off of the car and landed on your side (right side?). Blood started coming from your head and your eyes were kind of flicking around, not focused. A number of people had stopped, were calling 911 and taking care of you. There was more than one nurse there [including Maria Reyna Paculba, who was driving the car] so I stepped away so they could help you.

“They had safely turned you to your back and were giving you CPR. Jim Latham [my boss] was on the other side of Inwood and safely crossed when he could. I got your cell phone and tried to call your wife. I think I first called your mom but eventually called your wife. The ambulance came and took you, and Jim got your things.

“People from Callier were outside and standing with me. I talked to the cops on the scene who, frankly, were complete jerks. I ended up calling the boss of one of them and complaining.

“That’s pretty much all I remember off the top of my head.”

At this point I am posting the text of the police report that was filed:

“Unit [Ms. Paculba] was turning from eastbound 5600 Southwestern Medical Dr. [sic] to northbound 1700 Inwood Rd. Driver of unit 1 stated that she was blinded by the sun as she turned and collided with the pedestrian [me] who was walking eastbound in the crosswalk. Witness Able was walking beside the pedestrian and witnessed the crash. Witness Fox, who was traveling northbound on Inwood in front of unit 1, stated she witnessed the crash through her rear view mirror.”

The next few days

Zale-Lipshy

The first memory I have from the accident (see previous entry for what happened) was almost two months after November 1, 2012. I can remember just a little before I was hit, and then my mind is a blank from the time I got off the bus to walk across Inwood Road until late December, just before Christmas 2012.

I have learned some of what happened to me during that time from my wife, my son, and others I have spoken with since then:

Jean (my wife) says that Nana (my mother Vesta Spreng) called her around 8 am. She had just received a call from someone at Callier Center, where I worked, to say that I had been hit by a car and a co-worker had my phone. They had probably called Nana because that was the first person they found on my phone. Jean repeatedly tried to call my phone, but nobody answered. Jean says she did not know what to do so she called Father Lawrence, pastor at Christ The Redeemer Anglican Church. About 8:30 Judy Lewis at Callier finally answered my phone. Judy said the ambulance had taken me to Parkland Hospital ER. The next thing Jean did was call Evan (our son, aged 25, who was driving to work at that time) and tell him that I was at Parkland and to meet her at their emergency room.

Jean says that after learning what had happened to me, she was in no condition to drive herself to the hospital, so she asked our neighbor Marsha to drive her to Parkland Hospital’s ER. When they arrived Evan was already there and had spoken with me briefly before I was taken to the x-ray room. Evan told Jean that I hadn’t spoken much. He said a doctor had asked me a few questions: I did know Evan’s name and who he was, but I was confused about other questions: I did not know where I was (I thought I was in Garland, my home town) or what day it was or who was the president (this was just five days before the November 6 election). The doctor who had been asking me these questions also said that I would probably be able to return home after staying at Parkland a few days for “observation.”

Jim and Dave (my boss and co-worker from Callier) came to the see me at some point Thursday morning and they were told I was going to be fine. Jean and Evan went to lunch (about 3 pm) while I was cleaned up and moved to Parkland’s Intensive Care Unit (ICU).

Friday night I was moved from ICU to the 5th floor at Parkland. There I was asked “Are you in pain?” Emphatically I answered “NO – I’VE GOT FEELINGS”, which probably meant “YES.” Mostly I just wanted to sleep, but they wouldn’t let me. Saturday morning my mother (Nana) and sister Sande came to see me, and I was getting worse. I was very agitated. That is also when they moved me back to ICU. The doctors (led by Kim Rickert, M.D., an expert neurosurgeon at UT Southwestern Medical Cente) soon realized that my brain was swelling too much and that surgery was necessary to relieve the pressure. Jean and Evan were then asked to sign dozens of forms to approve the surgery, which could either put me into a vegetative state or (more likely) leave me with a traumatic brain injury with unknown damage to my brain. According to Wikipedia, TBI [surgery] can cause a host of physical, cognitive, social, emotional, and behavioral effects, and outcome can range from complete recovery to permanent disability or death.

I was taken to the operating room at 7 pm Saturday. My family was told that it should take an hour and a half. I came out of surgery three hours later. The left side of my skull was removed from just above my left ear to the top center of my head, from my forehead to just behind my ear. The doctor who did the cutting of my skull told my family they had never seen a skull as thick and hard as mine. They even had to rig a stronger tool, because the one they normally used couldn’t cut through mine.

Again, according to Wikipedia, depending on the injury, treatment required may be minimal or may include interventions such as medications, emergency surgery or surgery years later. Physical therapy, speech therapy, recreation therapy, occupational therapy and vision therapy may be employed for rehabilitation. I need all of the above forms of therapy, which required me to be moved from Parkland to the therapy center Zale-Lipshy. On January 2, 2013 I was moved from Zale-Lipshy to the Centre For Neuro Skills, where I spent the next eleven months undergoing daily rehabilitation for each of those needs. Even today I am still going to part-time rehab on an outpatient basis.

How I arrived here

I’ve spent the past 18 months recovering from a traumatic brain injury (TBI).  I was struck by a car as I walked across Inwood Road on my way to work November 1, 2012.  The lady who hit me (she was a nurse) called 911 and then ran over to me to find that I was not breathing and that my heart had stopped – I was dead. She started giving me CPR until the ambulance arrived, saving my life. I spent the next two months in Parkland Memorial Hospital – mostly in a coma – and the next eleven months at the Center For Neuro Skills, a TBI rehabilitation center in Irving. I am now at home, but I am still doing rehab several times a week on an outpatient basis.

I have severe aphasia (difficulty remembering words) and loss of memory, I can read only at a 2nd-grade level, and I have swallowing problems which limits what I may eat – some of what I swallow goes down into my trachea (windpipe) instead of my esophagus. Physically I received little damage – just a bloody bump on the back of my head and a very sore left elbow.  But I am in excellent condition. Actually, because of daily physical therapy, I am now in better condition than I’ve ever been in my life! I’ve lost over 100 pounds (and still losing) and walk about two miles three or four days each week.

My company, the University of Texas at Dallas – Callier Center, decided not to wait for my recovery and terminated my employment at the end of July 2012, probably a wise decision considering it will likely take many years (if ever) before I can recover enough to return to developing computer software.

I am now retired and living on Long Term Disability (LTD) and Social Security Disability Insurance (SSDI) for the next year until I turn 66 and can get Social Security retirement income.

I am writing this blog as part of my recovery, to help with my memory and my reading ability.

Thanks for reading this.