My run in with Guillain-Barre Syndrome (1970)
In late July of 1970- I was 4 and a half years old, I woke up in my room on Azalea Terrace and was having trouble moving my arms.
Mom took my sisters, Missy & Jeanne, and I to Devou Park that day to play. I fell a couple of times, and at dinner that night I got yelled at for dropping my fork repeatedly. They thought I was doing it on purpose. As a kid, I wasn’t really sure what was happening.
The next morning I couldn’t walk. I tried to get out of bed and couldn’t move my legs right. My mom said I complained of “having elephants on my arms.”
Within hours I was at Cincinnati Children’s Hospital in Ohio, diagnosed by the family pediatrician, Dr William Beckmeyer, with Guillain-Barre Syndrome- a virus that attacks the central nervous system. It basically starts at the base of the spine, and runs its course up and down the nervous system, causing total body paralysis in the worst case scenarios.
By 1pm on July 24th I had a tracheotomy and was on a ventilator- completely paralyzed. I had to be fed intravenously for weeks, after that I had a feeding tube directly into my stomach for even longer.
To this day I will smell just the right combination of food smells and it will remind of what the burps tasted like from the feeding tube food. Funny how you recall stuff like that huh? I mean I never actually tasted that food- it was kind of a brown-orange smoothie looking substance that I could watch going directly into my stomach… but then I would burp and get the after-taste. It wasn’t nasty or anything… just unique to be sure. And unforgettable.
So after being diagnosed (which I only vaguely recall) I do have one very specific memory just before everything went black for me.
We had made it to the emergency room doors, and the light was all yellow… we were in a covered area so it was dark with a lot of yellow parking-structure style lighting. I remember people talking rather urgently around me. They were yellow too. Then they took me into a room and gave me a spinal tap.
It didn’t really hurt the way I thought it should have. I mean I was a kid- so I didn’t really get what a spinal tap was… but I did figure out pretty quickly that it involved a big fucking needle being shoved into my back.
That was the last thing I remembered until some time later.
I recall flashes of hearing voices, smelling perfumes, hosptial smells- but it was all in darkness. I was in a coma but after a point, I became aware of things happening around me. Just…everything was black.
I was conscious inside… but my body was not allowing me to move, or even open my eyes.
It was terrifying at first, not being able to differentiate between dreaming and reality. If you’ve ever really listened to the lyrics in the song “One” by Metallica… you might get a sense of what it was like.
I had no idea what was happening or when it would end. But the day did come, and this is the memory that I will carry with me always, the reason for this story really.
I don’t recall any details immediately around this event save for what I tell here.
I was awake- but still in darkness. I could hear people talking in the room with me, my mother most significantly. I couldn’t say who the others were… it always felt like family to me versus staff. Though some of those folks at Children’s Hospital were like family to me by the time I got out of there.
Anyway, I heard my mom speaking directly to me. “Come on Burr, if you hear me I want you to move your toes”.
“Burr” was her nickname for me. She actually wrote that nickname in my baby book just months after I was born. When I got older I asked her about it. “Why Burr?”
Her response, “Because a rose you ain’t.” And that is not a fabrication… she maintained that explanation her whole life.
Back to the story…
Over and over that day, she asked- “Can you hear me? Please Burr… move your toes if you can hear me.”
So I did. I still couldn’t open my eyes, but I guess I got enough movement out of my toes to get the whole room screaming and crying.
It remains one of the most intense memories I have of that period of my life. Everyone celebrating something as stupid as me being able to move a toe.
Soon after that I was able to move my head a little and eventually open my eyes.
I still had the tracheotomy. I have the tracheotomy scar in my neck to this day. After I was out of the coma, I remember having to use my thumb to cover the hole over the tube in my throat so that I could talk. I even managed to get out a “Happy Birthday” into a recorder for Missy’s birthday that September.
I had to learn everything again. How to walk, talk, draw- anything locomotive. I was in physical therapy for years after that. I also required speech therapy well into grade-school.
Fortunately, I had a mom who, being a nurse, knew the importance of PT… as painful as it was, and as much as I would fight going she dragged my ass in and we did the work. It’s why I walk today, of that I am certain.
There was a kid named Tommy T. (name withheld) in the bed next to mine at CCH, same diagnoses – same situation. Almost at the exact same time. He refused, absolutely REFUSED, to go to therapy.
We stayed in touch, well- our moms stayed in touch after we both left the hospital. He never walked again- remaining in a wheelchair until he died around 14 or 15 years old from complications due to Guillain-Barre.
As I write this- it will be the 50 Year Anniversary of this event in my life in just a few weeks.
I fell in love for the first time too- not with Tommy, haha. But with Nurse Connie. She was one of my main nurses throughout my months-long stay. I have exactly one photo of her. She was hawt!
Nurse Connie and one of the other night nurses, a guy who’s name I should remember, and probably have written somewhere, threw me a pizza party to celebrate my impending release.
My trach was out so I could finally eat food again.
We had pizza and “Cold Duck” – which was a really shitty, cheap wine at the time. I didn’t know the difference… they gave me regular grape juice and told me it was “Cold Duck”, which made for a great conversation the next day when I told my mom “Yeah we had pizza and Cold Duck!”, and Nurse Connie had to quickly explain it was just grape juice.
Curiously, Mom mentioned a party “last night for Brian” in one journal entry and that there were “cookies and lemonade”. No mention of the Cold Duck.
She also noted that I told her, “Connie was my girlfriend”.
To this day, when I have a certain type of grape juice it practically transports me to that night. Sitting on that hospital bed, it’s lights out everywhere except the nurse station. Nurse Connie on one side of the bed (my right side) and that dude who was probably her REAL boy-friend laughing and eating pizza. And drinking Cold Duck.
I noticed, literally, for the first time- as I write this, that in this picture she has a ring on her finger. Oh well, she still gave me sponge baths so I’m counting her as one of my conquests haha.
As I got older- and into grade school there were questions regarding my mental (dis)abilities. I was listed as mentally handicapped in the insurance system at that time.
I had to visit a different kind of Dr. at one point. I don’t recall his name but his office was right up on N. Fort Thomas Ave. across from the Cop Shop and few doors down from the old Ft. Thomas Library. He had a stuffy, second-floor office that didn’t get a lot of natural light.
He talked to me for awhile. Couldn’t tell you about what, just assessment stuff I guess- trying to figure out if I was “retarded” – a term that didn’t carry the same stigma as it does today.
At one point he said he needed me to “go wee-wee” in a cup. I didn’t understand what he was asking. Which, certainly, made me look retarded. My Mom was a nurse, she never used euphemisms for bodily functions. So she jumps in to explain, “He needs you to go pee in the cup.”
To which, according to Mom, I replied, “OH! You need me to URINATE in the cup. Okay.”
No more short bus for me. But I suspect I am still listed that way somewhere. 😮
One of the other fun side-stories for this part of my life:
During the months I was first in a coma, and then just recovering overall in the hospital, I received hundreds of get-well cards.
Mom made a note to that effect in one of her entries “TOO MANY cards!” That was the only entry for one day.
Letters, prayers, money, trinkets to keep me occupied in the hospital… all manner of strange memorabilia- much of which I still own.
Mom started a scrap-book for me with a lot of the cards. Not the elaborate scrap-books that are now the “thing” 50 years later, just a big book with stuff taped to the pages. So many beautiful sentiments and people expressing their support.
In the years after I was more or less fully recovered, Mom would tell the story of a convict from somewhere up north that had sent a letter from some prison… he had read my story in the newspaper and just wanted to let us know he was praying for me. And thinking of me.
I never gave that story much thought until my Mom passed away in 2012. I was going through her closet and found a manila folder with a whole stack of documents related specifically to my time in the hospital. She had a journal that she kept that was essentially a day to day summation of my current treatments, indications, etc.
It is one of those little pocket style spiral note books. It cost 17 cents at the time. The first couple of pages are difficult to decipher due to some kind of water damage, but her pain is clear throughout. And her joy. It’s a roller-coaster ride. I’m debating on whether to scan and post it… but it’s really personal in a weird way.
She jotted notes on a range of subjects. Apparently, Dad didn’t show up to the hospital very much. I asked for him a lot and she noted every time he DID show up, but also how long it was between visits. In his defense, he was holding down the fort with my sisters too.
I know there were a couple of days where I had a good “BM”, for instance. (BM – being bowel movement).
She spoke of my moods, her moods, her fears. It’s kind of intense to read.
Then there were cards, articles about Guillain-Barre, and of course… letters. Quite a few- from family members expressing support and prayers to messages of whole church congregations having prayer vigils for me. So many letters…but not just any letters… THE Letter. From the dude in prison.
Actually, there were two letters from him. My mom, apparently, had sent him a Christmas card in response to his first letter. And he had responded in kind.
He was definitely a convict. The return postage was stamped “U.S. Department of Justice”. And the address points to a prison in upstate Michigan.
I’m not going to say his name… for some reason that doesn’t seem right, he was reaching out to pray for me after all. I will say this- he had one of those Three-Name Killer names. Like Lee Harvey Oswald, John Wilkes Booth, or Mark David Chapman. And no shit, his name has exactly the same number of syllables as John Wayne Gacy AND the middle name WAS Wayne… just not John Wayne Gacy.
And he signed his letters with all three names.
His original letter is mostly about my illness, the newspaper article (which was published on August 26th, 1970 btw), him praying for me etc. He has clearly found religion.
The second letter he opens up a bit more, telling of a car accident that almost cost him a leg. God saved it for him after much prayer apparently. He seemed pretty genuine. Even spoke of a family that he used to “baby set” (sic) for… they had 4 kids that he “really enjoyed”.
My curiosity piqued, I decided to do a little poking around on the world wide web, and what do you know… I actually located records, and one short mention in a Michigan newspaper about Mr. X.Wayne.X-LY.
In 1970 he was incarcerated for no less than 15 years for multiple counts of Sex with a Minor, Sexual Assault of Minors, Rape.
Sooooooo, he was probably using that picture of me in the paper for other things I would imagine. All he could think of was that hole in my neck! Hah yuck.
At just under 5 years old I had my first stalker.
The last entry in my Mom’s little pocket journal was dated September 29, 1971 – just over a year after my initial illness.
She noted that I would not “have to go back (to see my convalescent Dr.) for a year!”
“Hurrah!”, she wrote, “Going to see the Disney on Parade to celebrate”
So, if Disney had been doing those commercials in 1971, and had approached me it would have gone something like this:
“Brian Oliver! You’ve just survived a coma, paralysis, a tube in your neck AND STOMACH, and MONTHS in the hospital- and now you ARE OUT! WHAT ARE YOUUUU going to DOOOOO????”
And I would get to say, in my Happiest Place on Earth Smile, “I’m going to Disney World!”
And it would have been true.