Part 1: Remembering how the mysterious Guillain Barré Syndrome silently attacked me. #ArifFightsGBS

Little I knew that on this day last year something horrible was waiting to hit me so hard and turn our world upside down. It was the darkest day of my life. What you’re about to read is a first hand account of my encounter with the rare and mysterious Guillain Barré Syndrome (GBS). As much as I’d like to forget it, I thought to share my ordeal to create awareness so that you are not caught off-guard. May this never happen to anyone ever again.

Diagnosed with Guillain Barre Syndrome at Venkateshwar Hospital, New Delhi

November 1, 2017. It was a regular morning and I woke up at 7:00 am with a mild tingling sensation. Popularly called as jhunjhuni in Hindi, it’s a feeling we’ve all experienced many times. Some also call it out as a current. As I got up for shower I felt slight heaviness in my feet and told my wife. It seemed very normal and we thought it’s temporary so I went ahead thinking it’ll go away. The feeling disappeared after I came out and started getting ready for work. Had my regular breakfast and drove to work by 8:20 am. It was a breeze driving from New Delhi onto the newly opened Golf Course Road underpass en route from Cybercity to Sector 43, Gurgaon.

I’m a morning guy and would make it a point to reach office ahead of my team to take stock of pending workflows and line up actionables for the day. Like any other day, the flow of good mornings started and by 10:30 am we were off to our respective huddles/meetings. I had to double up as a planner to work on a digital pitch to an FMCG major for which I had to steal some time off from an otherwise cascading meetings schedule. We had already cleared two rounds with conviction and were preparing for round 3 to their top management. The stakes were really high and my Boss was out of town which left it to me to present to our COO and leadership team internally before going back to them. I had texted my Boss “I’m on it.”

I came back to my workstation and started working on the deck. Around 12:45 pm, I felt the same tingling sensation but this time in my arms. I felt a little uneasy to type and lift my forearms which immediately followed by heaviness in legs too. I paused and wondered what’s happening? Or, is it that I’m feeling nervous ahead of the pitch? The second option was highly unlikely as we had everything under control. It was 1:30 pm, I stayed back for lunch and alongside googled “hands and legs feeling heavy”. I came across strange terms and references to ionic imbalance, fatigue, stress, stroke, GBS (never heard of this), and what not. All of a sudden after lunch the feeling went away and so I thought it must be temporary.

Little I knew that was my last smile for the night year.

The day went on, I sat to review some social campaigns and new creatives. It was our regular hustle. By 4:30 pm, I got a call from COO’s secretary that she wants to review the pitch at 5:30 pm so I returned to add closing notes. While I was walking to my seat from the Creative bay, I again felt heaviness in my legs and somehow made it. I reviewed the final deck one last time and left for the meeting. While I was walking the heaviness returned and my speed halved through the hallway. It suddenly felt as if someone is holding on to me. I looked back and no one was there. Very weird. I made it to her desk and sat down immediately. We had a detailed review and were left with minor tweaks at the end. She concluded “job well done. Let’s get this home.” to which I nodded with a smile. Little I knew that was my last smile for the night year.

Now all of this started feeling scary. Something was happening within and I had no idea what?!

It was 6:45 pm and turned dark outside. I started walking back to my desk and now it felt like a drag. I kept wondering is it the nervousness or something else? Whatever it was, it was growing on my mind now. I touched my heart and the pulse seemed normal, so what else could it be? I reached my workstation and sat down to have water and decided to call it a day. All my team had left for the day. I reached out for my laptop bag and to my surprise I wasn’t able to lift myself up from the chair. What the.... ? It was almost like someone had fevicoled my hips to the chair. I tried again, and again and gave myself a big push the fourth time to stand up. Now all of this started feeling scary. Something was happening within and I had no idea what?! I dragged myself to the office Reception and suddenly started limping in between. It took me 5 mins to reach which otherwise would hardly take 5 seconds. I was still 10 steps away and there was a soundproof glass door in between. I could see my colleagues playing table-tennis on the other side. At this point, I felt like I’ll fall and I screamed, screamed harder and harder but damnit the soundproof door! I told myself “god damnit, I have to make it to the door else I’ll collapse and go unnoticed”. It was terrible, like an escape from a shark, a jump before a crash, my fingers are shaking as I type this.

It was 7:15 pm now, I gathered courage and somehow threw myself to the door and suddenly my colleague Manik noticed and rushed to me. He opened the door and I told him “just hold me. Hold me. Hold me. I’m falling.” He and a few others quickly held me and made me sit down and offered sugar and coffee suspecting a BP drop. I told him “I’m feeling terrible. Please take me down to my car so that I can drive back home.” He disagreed and told me he’ll arrange for a office cab and two security guards to escort me home. By now, both my arms were  on two shoulder support and I somehow managed to came down the lift and sat in the car. I told the driver to take the fastest route to home.

Thirty minutes into the drive, and I started feeling week. I called my wife at around 8:00 pm and told her “the morning feeling returned, and I’m feeling very very weak. Something I’ve never felt before. Please rush to the gate down and we’ll switch cars and go straight to the Hospital.” She panicked and asked me “why’s your voice feeling so low?” I had no answer and replied “I don’t know what’s happening but we have to go to the hospital directly. Carry some money, a pen and identity cards. Will meet you at the gate.” I reached home by 9:20 pm switched cars and my wife took me to Emergency, Venkateshwar Hospital, New Delhi as it was the nearest to our home. I told her “whatever it is, stay strong.” She held back her tears but made sure we reached swiftly.

I stared at her and she at me. It was a long pause. We didn’t say a word but while at it we knew we had to keep each other strong.

“Move, move, move (the hallway)”, I heard the hospital ward boys yell as they took me inside on a stretcher. It was almost 10:00 pm now and to our luck there was a visiting Neuro-Surgeon on the rounds. He rushed to examine me, took stock of my symptoms and asked if anything happened earlier? I said no and then he asked any fever, stomach infection to which my wife replied “he had viral fever a month back”. That was a month back and I had cured. After listening to us he outlined three possibilities: a lowered sodium potassium ions level, MRI to rule out any damage to brain, or last a rare condition called GBS for which they’ll need to do some tests. I suddenly recollected reading something about GBS earlier and prayed in my heart that it’s nothing serious. The Doctor added “we’ll have to admit Mr. Arif”, and took my wife away for a discussion, meanwhile I was asked to take off my shoes and change into patient clothes. I felt very weird and kept myself calm. By 11:00 pm my wife returned and said they’ll start with an X-ray, MRI and tests right away. I stared at her and she at me. It was a long pause. We didn’t say a word but while at it we knew we had to keep each other strong. I told her not to panic and inform our parents to take the first flight to Delhi. After signing off the consent forms they took me in for an X-ray at 11:45 pm. There were big machines and this went off well.

I breathed heavily after coming out of the near-death experience, and said I’m never going back in that f*ing machine. Fk you MRI!

Next was the monster in waiting, the MRI. I didn’t know much about MRI except had seen it in movies where they take you inside a tube for scan. By 12:30 pm, my Uncle also arrived and was in disbelief yet comforted me. The technician said it’ll be a 50 mins scan, and you’ll have a bell in your hand. Press it if you feel dizzy or nauseating. They prep’d me up and it started by 1:30 am night. They had tied my arms and legs, put on a soundproof headphone and sent me in. It felt like you were stuffed in a white cave and suddenly “Tak, TAK, TAAK, TAAAAKK”, sounds started with some laser like thing flying across your entire body. I freaked, and I swear it was scary as shit. I closed my eyes, held me tears, and started counting seconds. The noises increased and I didn’t even blink out. I tried to distract my mind by forcing it to think of places I’ve visited in the past but nothing helped. The sounds and the bright light kept coming back at me. I was terrified, and wondered if this is the end of everything? I did a little prayer and counted, and counted, and counted and then suddenly the noises stopped. I pressed the bell as hard as I could and those technicians were nowhere near! I suddenly found myself in a fix, feeling suffocated and scared. They came in after 5 mins of closure and took me out. I yelled at them and cried. Somehow my wife and Uncle consoled me and we came to the ER hall with open air. I breathed heavily after coming out of the near-death experience, and said I’m never going back in that f*ing machine. Fk you MRI!

It might have been around 4:00 am when the Doctor decided to shift me to ICU. I remember being taken there and was given a sandwich and juice. By this time, my legs felt so damn heavy and my voice shrunk to 20-30%. I was tired, scared and uncertain and don’t remember anything after that. I guess I dozed off.

November 2, 2017. I woke up to see myself surrounded my tubes, electronic chips on my chest, fingers, monitors going *beep, beep, beep*, weird machines, wearing a blanket. And then walks in a nurse saying “Good morning Mr. Arif. Did you sleep properly? How are you feeling now?” I was shocked upon the realisation that all this is actually happening with me. But how? I saw my wife walking in with my Uncle and they asked how I was and informed me the Doctors have diagnosed and confirmed that I have Guillain Barré Syndrome, GBS and informed them about the treatment options. He speculated my viral fever could be a possible trigger as everything else seemed fine.

What I could never ever imagine was happening with me. Why me? I’ll never know.

GBS? We had never heard of Guillain Barré Syndrome (pronounced gee-YAH-buh-RAY) and the Neurologist told us it’s a very rare medical emergency which happens to 1 in 100,000 people in which my body’s own immune system mistakenly attacked the peripheral nervous system (PNS) by destroying my myelin sheath - the insulation covering on nerves essential for signal conduction and thereby movements. In short, my brain got disconnected from my PNS. My legs and arms by now had become completely numb and weak and I was possibly looking at paralysis ahead of me *shudder*. As if this didn’t rip us apart the Doctors added that the GBS was ascending up my body to attack my respiratory system and we’ll need to act fast by intubating him. Intubbb... what?? Oh Lord, that was a lot to take for me and my wife. At this point uncertainty started creeping in and our little world had turned upside down in a matter of 24 hours. *beep, beep, beep*.

- To Be Continued -


Today it’s been one year since that horrible horrible day and I’ve lost count of how many times I've rerun this day in my head to search for answers. What I could never ever imagine was happening with me. Why me? I’ll never know. Smh.

Takeaway for you: if you ever feel an unusual numbness or prolonged tingling sensation in your arms and/or legs then stop everything and sound off an alarm to those around you with an importance nothing less than that of a heart attack. It could be a nerve attack and trust me it’s silent but way more shittier. Don’t waste time thinking,  just rush to a nearby hospital and ask for a Neurologist. I was the rare 1 in 100,000, you shouldn’t be.

What happened next, I’ll write in my next blog post as I’ve to leave for my therapy now. You can subscribe by email above to stay informed.

Never giving up,
A.