How I got LUCKY with Guillain Barre Syndrome
An iconic image of Guillain Barre Syndrome is World War II-era President Franklin Delano Roosevelt - whose courage and leadership in the face of debilitating illness was an inspiration at a time humanity needed it most. (Source: GBS Support Group, Famous People with GBS)
My Encounter with Guillain Barre Syndrome So when I suggest feeling lucky to have contracted GBS I wish to provide perspective. (I especially don’t want to appear insensitive to the suffering of others likewise affected by this condition):
- On a Wednesday in December, 1996 I felt a bit off.
- I spent the next few days with a business associate who had the flu.
- By Sunday my long adductor muscles (which run from the pelvis to the knee) were so swollen I couldn’t bend my legs enough to tie my shoes.
- When I woke up Monday morning I felt like I was on fire – as if my body was receiving constant electric shock.
- Being a somewhat “dedicated” runner I thought exercise might help.
- But when I tried, it was like my thighs were made of rubber and shins of lead; my legs went out to the side uncontrollably.
- After about 10 steps I abandoned running, went to church and then on to my doctor’s office.
- In a period of 10 days I would go from running 50 miles/week to not being able to stand for 50 seconds.
- The pain was excruciating and constant; it hurt no matter what I did.
- GBS is diagnosed by exception (doctors rule other conditions out) so it took 30 days and various specialist visits before I was seated in the office of the Chief Neurologist of a local hospital.
- By this stage of the disease, I was so weak I could not resist the slightest pressure with my arms as the doctor tested me; this made getting around next to impossible as I had to lift my legs (by hand) to get in and out of the car.
- The Chief Neurologist told me they thought I had something rare and (précising it with the statement: I realize how unprofessional this must look) literally read the checklist for a strange-sounding disease from a medical book. He told me what I had affects about 1 in 100,000 people and the only thing he could predict was that it is unpredictable.
- Over the next 30 days I would be hospitalized twice – the second time with (according to my medical records) 102+F degree temperature.
- The records don’t give an exact peak temperature value. What I know is I had to lie on the floor while awaiting admission and after being admitted passing out in the bathroom and hitting my head on the sink.
- The strangest sensation was my brain taking for granted I could do things my body could no longer do. I needed a wheelchair to go to the lobby (for Hortons).
- And while I feel nothing but praise and gratitude for the brilliant, caring team of doctors, nurses and technicians who intervened (as well as the pharmaceutical company - THERE I SAID IT! - which invented a plasma therapy tragically unavailable to Mr. Roosevelt and other GBS patients who’d gone ahead of me) I would learn over the next 9 years that western medicine had no answers for my full recovery.
- This uncertainty reminded me of another business associate who hated flying and once overheard a mechanic from a small airline tell the pilot of a plane the associate was sitting on: I think it’s fixed you’ll just have to go up and try it out.
Getting LUCKY In 1996 it was not obvious I would ever describe my encounter with GBS as “lucky”. Nineteen years later I clearly see how GBS fits into an acronym for the word LUCKY: Life Unveiling Consciousness and Knowledge (for) You.
Indeed GBS happened “FOR” rather than “to” me:
- It put me on a path I was destined to follow but would have never otherwise chosen.
- It led to my discovering technologies and methods outside western medicine (most dramatically PEMF) that tapped into my body’s innate ability to heal itself if I gave it the right tools.
- It connected me to a group of equally brilliant, equally caring non-traditional health practitioners and made me realize I needed both western medicine and non-traditional methods for full recovery.
- Ultimately it would be non-traditional methods that revealed not only the true pathology of my GBS experience, but likewise the blueprint for other (not always helpful) life experiences: RIP ROARING ANXIETY!!!!!
The Elephant in the Room This anxiety was my elephant in the room for 56+ years. Since it had always been there I thought it normal - until I started to experience life without (or at least much less of) it. This anxiety had fed:
- adolescent alcoholism - TODAY is literally my 30 year anniversary of stopping drinking;
- panic attacks - not helpful when your dream is to be an NHL goalie (alcohol wasn’t that helpful either);
- the need for a 40 year old guy NOT TRAINING FOR THE OLYMPICS to run 2 and (frequently) 3 times per day;
- the paradox of a resting heart rate of about 50 beats/minute during the day – and waking up many nights with a runaway freight train in my chest.
In truth the major reason I feel lucky to have had GBS is, I believe Guillain Barre Syndrome was my body’s way of saving me from the massive (emotionally-driven) heart attack that would have killed me. I base this view on the insights of 5 independent energy healers each of whom described the equivalent of an emotionally-damaged heart (my physiological performance in stress tests was WAY above healthy norms for my age category). And to go back to the pharmaceutical industry, and in all due respect to western medicine, no amount of anti-depressants could have fixed this – any more than any amount of running or alcohol could! I KNOW: I tried them all!
MISSING DOG There’s a wonderful joke about a Missing Dog: one eye, 3 legs, deaf in one ear, broken tail – answers to the name Lucky! When I add up high-anxiety, adolescent alcoholism, panic attacks, depression, OCD, and (ultimately) Guillain Barre I feel a touch like that missing dog.
The good news is these experiences helped place me “right here, right now” with peace and confidence: I’m exactly where I’m supposed to be. Most importantly I know God put me here in this time and space with the benefit of the consciousness and knowledge gained from these experiences. It’s HIS plan! That’s enough!
And without Guillain Barre Syndrome I wouldn’t be here!
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- How I got LUCKY with Guillain Barre Syndrome