My wife, Harshada, and I are Isha Yoga meditators. It had been long since we had been to the Isha Yoga Centre in Coimbatore. We planned to overlap our trip to Coimbatore with our children’s winter vacation. I had started practicing yogasana’s and different kriya’s that I learned at Isha since last 6 years. I’d noticed one thing that I’d got fever only once in last 5years. I was practically living a medicine-free life, except for a few occasions like an insect bite on the neck at Fire-Flies ashram on Kanakapura Road, during one workshop, which had caused a severe rash on and around my neck in 2012. At office, I was noticing that somebody’s lower back was aching, somebody’s neck was troubling them; some had started showing symptoms of slightly-higher-than-borderline cholesterol; the viral fever brought each of them down in turns. After I come back from Isha I wanted to share with my colleagues that it’s worth learning yoga at Isha. “You go closer to a possibility of not meeting a doctor at all.” We, my wife and two children, Chirantan (14) and Arnav (11), had a great time at Isha Yoga Centre. On the return journey, while at MTP bus stand in Coimbatore I started feeling feverish. The next day, which was 29th December 2014, I was back in Bangalore, down with fever. Harshada is a non-practicing doctor; she has a degree in Integrated Medicine and Ayurveda. My low-grade fever continued, Harshada had kept a watch on my temperature and was keeping it under control with paracetamol. On the third day of my fever we went to the doctor, Dr.Nalini at Shanti Hospital and Research Centre (SHRC) in Jayanagar, close to my house. Doctor administered a usual course of antibiotics. I’d never taken a sick-leave for last 2 years since I joined Broadcom, this time I took off for full five days and resumed back office on Monday. It seemed my left ear had an infection, and I was feeling weak. An ENT at SHRC bombarded me with one more round of antibiotics. On 7th Jan, Wednesday, I told my boss, “I’m not feeling well” and had siesta in the office’ men’s lounge. I was feeling uncomfortable in my spine. Next day I went to Dr.Nalini for enquiring why I may be feeling so weak. “It must be B-Complex deficiency” she said. Harshada had already put me on Becosule, to compensate for B-Complex, Dr.Nalini told me to continue the same.
On 9th Jan, Friday, as per our regular morning chore, I took the car key; Harshada, children and I got into the apartment lift and we all came to the basement. After getting out of the lift there is a small step, half the height of a regular step. While trying to step down, my right leg buckled. I handed over the car key to Harshada and managed to get into the navigators seat. We dropped the children, to go to school, near the apartment gate. It is about 200m from F-block, the building where we stay. As Harshada was driving, I popped out of the car to escort the children out of the apartment gate. While heading back, my movement had become slow, I was duck-walking. Harshada came out to see me near the apartment gate and walked along till the car. Harshada wasn’t comfortable the way I buckled. She told me, ‘had it been due to the infection in your ear, the direction of imbalance would have been very different from the way you buckled.” After we reached home, at 7:00am, she immediately called our good friend and a gynaecologist, Dr.Vijaya Sherbet. Listening to sequence of events of last 2 weeks from Harshada, Dr.Vijaya immediately diagnosed it saying, “it’s called GBS, Ashirwad needs ICU attention, get him admitted immediately. GBS stands for Guillian Barre Syndrome”. We didn’t know what GBS was so we googled it. Harshada told me, “What Dr.Vijaya said shouldn’t come out to be true; the weakness you are showing should just be a B-complex deficiency and not GBS.” She also checked with me if my brother-in-law, Ramakant, had GBS in the past. I confirmed, “it was not GBS but it was SJS (Steven Johnson Syndrome), a condition that arises due to contra medication’. While we were gulping the breakfast and tea, I took Dr.Nalini’s appointment for 10:30am. We reached SHRC at 10:25am. It had become difficult for me to get out of the navigators seat. I somehow managed to get out of the car. Harshada wanted to help me but I told “no worry I’ll reach the doctor, you park the car and come.” The security at SHRC assisted me to reach the doctor, by when Harshada had parked the car and reached doctors room. Just by looking at the way I was walking Dr.Nalini told Harshada, “This is GBS, Guillian Barre Syndrome. You have to get Ashirwad admitted to ICU.” She gave us 3 options of the hospitals, all on Bannerghatta Road, Bangalore. We refused Sagar Hospital for logistical reasons; on a call Dr. Nalini found out that Neuro-physician at Apollo Hospital was out of town. She called up her friend, Dr.Sheela Chakravarty at Fortis Hospital if she could take my case of GBS. After consent from her, Dr.Nalini wrote a recommendation to Dr.Sheela. We took the letter and headed to Fortis Hospital. While trying to walk out of Dr.Nalini’s room my left leg buckled. I wasn’t able to stand. The support staff immediately got a wheel chair and rode me till the car. With two people helping me, I got into the car, again in the navigator’s seat. For Harshada and me, ‘Project GBS’ began! While going from SHRC to Fortis Hospital, I sms’ed about being diagnosed of GBS to a CFL-teacher and two close friends, my engineering-days pals, Ajay and Bhushan. CFL stands for ‘Centre For Learning’, a small school where my children study. Being a small setup the parents and teachers know each other well. Dr.Vijaya is also a CFL-parent.
We reached Fortis Hospital. The guard near Emergency helped me get into the wheel-chair. He pushed it till the entrance of Emergency section. Harshada came rushing and showed the recommendation letter at the counter. The moment I uttered “Dr.She” of Dr.Sheela I could see the whole emergency-ward responded swiftly. The first thing they told me to do was to change into an in-patient-outfit, a backless and body-flaunting blue coloured apron. I removed my wedding-ring and a precious-stone-ring and handed them over to Harshada. The first prick was done in my right hand wrist. After a helpless effort of a nurse to take my arterial blood, a Bengali doctor in a bright coloured dress helped the nurse take my blood out, almost painlessly. I was surprised with her skill. Knowing the severity of GBS, she started comforting Harshada.
They then took me to do the nerve-conduction-test, which I had heard of a few months ago from a friend and my djembe (an hourglass shaped African drum) student whose little finger had slightly numbed. A young, smiling technician with French beard welcomed me, helped me lie on the exam-table. He pasted one ‘common’ point on my arm and gave shock-impulses to different points of my palm. The data was being gathered by a computer. Then he did the nerve conduction on my legs. The test finds the impedance or obstruction in the nervous path as compared to the standard impedance. On a friendly note I asked the technician if nerve-conduction-test was positive, he said it looks like and then professionally added “please check with the doctors”. The way my body parts were giving up and the nerve-conduction-test was making it certain that I had Guillian Barre Syndrome.
Dr.Sheela came to the ICU to see me after the admission. She must be in her mid-fifties, walked like a man, big eyes or rather eyes looked big due to kajal she put, curly hair, left loose. Her untied hairs gave a more Malayali look to her Bengali surname. She was a cheerful lady and wore bright-coloured sarees. She was accompanied by Dr.Sandhya during her visits. They dialogued with us and were preparing Harshada and me to take on GBS. On day-one of the ICU admission, I told Dr.Sheela, “Doctor, be ready to play football match with me on the fifth day from today.” She stepped back and said, “I don’t know how to play football.” I said, ‘that doesn’t matter.’ Dr. P R Krishnan was my neuro-physician. He always wore a gentle smile on his face. Dr.Sheela and Dr.Krishnan were visiting once daily. The team of ICU doctors comprised of Dr.Ullas, Dr.Padmakumar, Dr.Sanjay, Dr.Bharat, Dr.Gagan and 5-6 more heads, I don’t remember their names. Dr.Gagan and one doc who put her thin stringed purse across her shoulder were two women in the ICU doctor’s team. Except for middle-aged Dr.Ullas and Dr.Padmakumar the rest were young. They formed an amazing team who worked 24hrs x 365days.
GBS is one of those illnesses where your auto-immune system gets fooled. It thinks that your peripheral-nervous-system is a foreign body and it starts eating up the outer covering of the peripheral nerves. This covering is called myelin sheath, and the process of eating it up is called demyelination. Fortunately, it only attacks the peripheral nervous system and not the central nervous system, and that it doesn’t eat up all the peripheral nerves completely but only the myelin covering. A sensation of numbness and tingling starts spreading all over the body.
On the hospital bed my one hand was tapped by a BP machine which used to pump in air every fifteen minutes to keep a track and record of my blood pressure; a small clamp was fastened to my index finger to monitor my pulse rate and an ECG machine was monitoring my ECG 24x7 with 5 probes pasted to my chest. These were the routine observations points for every patient in the ICU. They had provided an emergency button in my right hand which was to be pressed in case of emergency.
Next day, sometime in the afternoon, the docs were going to draw Cerebro Spinal Fluid (CSF), a liquid from my spine, to doubly confirm the syndrome. A clean shaven doc, bit chubby, wearing an authentic smile, curly brownish hair; came and made me lie on one side to take the CSF-sample. He donned his operation-gown, wrapped my back in operation-cloth. The doc gave me a local anaesthesia. I didn’t even come to know when they drew the fluid out of my spine. It was going to take a day for the CSF report to come. The docs didn’t want to wait on it to begin the medication.
We had two choices, actually three, for treating GBS. One is where you don’t take any medication, the myelin sheath of the nerves will restore by themselves, and this could be time taking, as much as a year or more. Second option was Plasma-Pheresis, where they would remove antibodies from my blood and inject plasma from somebody else’s blood, almost like a dialysis. That would cost about Rs.50,000/- per day and I would have had to do the process for 5 days; total costing to about Rs.2,50,000/-. The third one was relatively harmless treatment called IVIG (Intra Venous Immuno Gloubulin). The Immuno Globulin would be injected through an IV. A peripheral cannula was already injected on day one in my wrist but no medicine was injected through it till then. Harshada and I decided to go for IVIG. It seems, in IVIG they would inject so many antibodies inside, that they would outnumber antibodies which are attacking my peripheral-nervous-system. The harmlessness of IVIG came at a whooping cost of Rs 1Lakh per day; this also had to be injected for 5 consecutive days. We definitely didn’t want to go for no-treatment method as the time anticipated was unknown. The choice left was only between Plasma-Pheresis and IVIG. With all friends and relatives having a kind heart and an internet in their handheld device, google was helping them give inputs to Harshada. “IVIG doesn’t suit for some. Once you start with IVIG you cannot go for Plasma Pheresis”. Some said, “In Plasma Pheresis you have to be careful as you don’t know about the blood from which the plasma will be extracted.” It was not an unknown situation of decision making that we were going through, a decision-making to be done with plethora of information available to you. We took all these inputs and spoke to my neuro-physician Dr. P R Krishnan. With his inputs we decided to go for IVIG.
Chapter3: People Support
On second day of admission to the hospital I got 2L Rs transferred from my State Bank of India loan account, to ICICI bank from where Harshada could do the initial payment. Harshada helped logging in into these bank websites and do it for me. I was unable to type on the laptop.
It was not easy to tell people what GBS was. It was obvious for people to go to Google it and find what it was all about. As days passed by many of my friends had acquired a Google-PhD in what GBS was all about. They told Harshada and me many informative things about the illness. A discussion done in person about GBS who didn’t know about it was much easier than telling them about it over phone. Nobody, apart from doctors, knew about this illness. On phone when Harshada said, “Ashirwad is not well”, people had preconceived idea related to my age and would say, “oh, heart attack? Don’t worry its common these days. He will be fine soon.” Then she would say, “no its GB Syndrome”. They would ask “TB?” and then answer without waiting, “Oh, that’s common and has known medication. Don’t you worry at all, he will be fine.” But then they would wait for a second and ask, “then why is he admitted in the ICU?” Harshada found a simple solution to this, she would slow-down and say, “it’s G B S, for Girl-Boy-Syndrome.” The other side of the phone would get into receptive mode and would ask, “Oh, GBS, what is it?” Then the real conversation would begin.
There were many of my relatives and friends from Mumbai, Pune, Satara, Ratnagiri, Chiplun and different parts of Maharashtra who wanted to rush to Bangalore to help Harshada and me. In three days from my admission to the ICU an unbelievable structure of support got erected. It consisted of CFL-fraternity including CFL-parents and teachers; and my engineering classmates’ fraternity. We refused my aging parents to come to Bangalore as Harshada’s attention would divide in managing multiple things rather than focusing on me. My sister Swati, we call her Didi, arrived from Pune and my co-brother, Vinayak rushed from Satara. (‘Co-brother’ is not a dictionary word, though it has found a place in Wiktionary. It has a highly Indian context. It means my sister-in-laws’ husband.) Didi and Vinayak became an integral part of the support structure and we all together executed the ‘Project GBS.’
Gitanjali Sarangan (Geetu), a CFL-Parent, came to meet me the same day I was admitted. She runs a space called Snehadhara Foundation; which allows special-children, their parents and special-educators to explore and introspect their world using various art-forms. I am a family member of Snehadhara Foundation in capacity of using drums as an art form. I’ve been drum-jamming on weekends at Snehadhara for last 2 years. When Geetu saw me, she said, “with whatever you do for the lovely (special) children, GBS shouldn’t have touched you.” After a while I told her to play Kabir’s ‘moko kahan dhoonde rey bande, mai to tere paas me’ on her mobile. Each line of the song was slowly penetrating deep inside me. By the end of the song I was in tears of happiness in my eyes, fully charged up with energy, I don’t know where it came from. “Will you do a drum-jamming session at Snehadhara on 7th Feb, Saturday?” Geetu asked me. It was a month away. I happily jumped on the opportunity and grabbed it; without worrying about what’s in store for me over a month. On that weekend many of my neighbours, where I stay, and many friends turned up to see me in the ICU. My face was still fresh, beard still smaller than the stubbles. I took a stock of the news of last two days from different visitors. On fourth day I was moved to a different ICU area.
Somewhere there was a blind association between the word ‘nurse’ and ‘women’ in my mind. But here, at Fortis, it was both men and women who nursed me. Nurses took arterial blood sample every morning at around 5am from my wrist to monitor my sodium and potassium levels. With unskilled hands of few nurses, it was quite a painful process. Blood reports used to be ready at 7am, in just 2 hours. I started using a urine pot from second day at the ICU and when I was completely confined to the bed they put me a condom catheter. Condom catheter helped, but it came with its own challenges. Not all nurses, mostly guys, knew the art of putting it right. Sometimes a bend in the pipe would block the urine flow and the back pressure hurt. Doctors asked me if I’d lost control of my bladder but that never happened. K’thee’ter, as many nurses pronounced, was a part of me for next eleven days.
Daily, I was playing Tril with my fingers to keep a check on my motor control in the ICU. Tril-game goes like this. Touch the tips of right-hand-index(rhi) finger to the left-hand-thumb(lht), revolve the index finger clockwise for the right-hand-thumb(rht) to touch the left-hand-index(lhi) finger. Then I break the first connection, the rhi-lht connection, and revolve rht anti-clockwise for rhi to touch lht over existing connection. Then break the second connection, the rhi-lht connection; and repeat this criss-crossing of fingers for a while. I don’t know if there’s a name for this game, so I called it Tril. I was losing the ability to finely coordinate the Trilling connections by the day. On 4th day I had lost complete control over my fingers, I couldn’t even hold a spoon. I also noticed that there was a lateral white line which grew on my each nail, of my hands. The timing of its appearance coincided with the illness. The growth in all 10 fingers was in synchronicity.
Chapter4: This is THE Moment - Humpty Had a Fall
I was shutting down like a computer, part by part. The last time I’d felt ‘I’m nothing’ was in 1999 during Kailash-Mansarovar yatra (pilgrimage). On every turn during the sacred walk, a huge mountain used to open up to you; as if you’ve clicked a mouse on your computer and suddenly a new scene is showing up. There is no way but to bow down to the enormity and the magnanimity of the Himalayas; it belittles and softens something in you. This time it was the system-reboot, and hopefully not shutdown, that GBS had caused, was telling me ‘you are nothing’. Though the body had become a bag of bones, in my mind there was something which was saying “This is IT. It IS, it just IS. There’s nothing right or wrong about it. It is whole and complete. Whether your pair of eyes sees the wholeness of it or not…” My mind was at absolute ease at every moment. I had got these insights from J Krishnamurti’s writings and had learned this language at Landmark Education, a company which helps you discover yourself; and at Initiatives Of Change, also an organisation which helps you in self-discovery and puts people together and conflicting countries together. I’m not sure whether to call this as ‘accept yourself just the way you are, not the way you want to be’ or not. In my heart I knew, I was in the lap of Grace. There was fullness in this nothingness. It was teaching me how to start from zero every time you become nothing, an opportunity to start everything all over again, afresh. For any small thing that happens, mind keeps searching for a reason. GBS is an illness where doctors admit and say, “we don’t know why it happens.” There were many who were reasoning it out but GBS was one where reasoning had failed
The numbness had increased to 200% by fifth day, Jan 14th. There were no signs of its lessening. It was all over the body, on the tongue, it didn’t spare even the gums. It was 300% on my palms and feet. If I touched anything, there was a feeling of a thick rubber sheet between the object and my palms. The quality of this numbness was different; it had some kind of heat in it. I was feeling as if I’m thrown in a furnace with 2000deg C; not sure if I was getting hardened like a brick or I was getting softer. At another time, I felt as if I am an anthill, ants pressing their feet and walking all over me. I was at the peak of my illness. When Dr.Sheela arrived that day, I told her “No football match today, I’m unwell. Let’s have it in another week’s time.” She agreed. We both laughed.
As the days passed I was becoming immobile. The doctors wanted to avoid any possibility of blood clot in my blood circulation system. The nurses daily injected Heparin shot in my arm to keep the blood thin. I guess, this is the same liquid which leeches releases when it bites and sucks blood. What I could do physically a few hours ago was becoming difficult to repeat. The verbs like sit, bend, hold and face-frowning were experiencing atrophy. All that I had taken for granted for so many years was slowly coming to an end. ‘To stand on your own legs’, or in Hindi they say, ‘apne pairo pe kahda hona’, made a very deep meaning to me. During one morning-convoy of doctors’ visit, they decided to move me from regular bed to the air-bed. I had heard about it in the past, in 2010. In my Mentoring and Coaching assignment with a business school, MET in Mumbai; my director Prof.Vijay Page’s wife was immobile and she was using the air-bed then. The air in the bed is moved mechanically and it causes micro movements in the surface of the bed thus allowing the skin which touches its surface to breathe and minimize the possibility of bed sores.
On one hand the air-bed was helping me, by micro-moving the bed-surface. But on the other hand corrugations on the bed were poking in my spine. It hurt. The nurses helped me cover the edgy folds of the bed with thick folded bed-sheets but that gave relief only for a while. It took 3-4days to bring myself to a state of reduced pain on the air-bed; all by bringing the bed to a certain angle and with folded bed-sheets covering the corrugations. I cried a couple of times due to the excruciating pain that was hurting my back.
The nurse came early in the morning to give me a sponge bath with warm water. They even changed the bed-sheet then. They turned me on the left side and used to wipe my back; they rolled the old-bed-sheet till where I was lying and spread half a fresh one. I took support of the railing along the bed. They then used to turn me on my right, over the fresh bed-sheet and wipe the other half of my back, remove the old bed-sheet and spread the new one. This had become a daily routine. The air-bed was significantly taller than the regular bed. This made the relative height of the side-railings shorter. It was sixth day, 14th January, morning 5:30am. A nurse arrived to give me a sponge bath. My spine was hurting so bad that a day before, I felt somebody should keep me flat on the floor. As usual, the nurse helped me turn on my left and I was taking support of the railing. In the middle of the sponging, the railing gave in. “Thud” a loud noise happened, I fell flat on the floor, just as I’d thought of a day before. There was an abrasion near the bottom right of my rib-cage, looks like that spot took all my weight. The thud sound was enough for other nurses to gather around me. At the top of her voice, one of them started asking me, “Sir, are you feeling giddy”. She would’ve asked this half a dozen times. She wanted to know if there was a head injury. I was in my senses. I realised that there was no damage done, except for a sprain in the left side of my neck. Six of them lifted and kept me on the air-bed. The sponging-nurse massaged my neck and the sprain went away. One junior orthopaedic physician came to inspect me. He told me to bend and fold my legs. Two days later, a senior orthopaedic doctor pushed, pulled and folded my limbs, asked me, “is it paining anywhere?”, it wasn’t and he confirmed, ‘all is well’. The poem I was humming just after the fall was ‘Humpty Dumpty sat on a wall, Humpty Dumpty had a great fall. All the Kings horses and all the Kings men, could not put Humpty Dumpty together again.‘ I was in one piece. Many senior doctors and a few long faces from administration came to see me and apologise. One of them was a Fall-Specialist. The title ‘Fall-Specialist’ was very misleading. I was unaware that there was a ‘Fall Free’ board in green colour showing up boldly on the wall just behind my bed. A representative of bed-supplier and maintenance also came to check the railings, they locked well when raised. After a few days I was humming, ‘Jack and Jill, went up the hill to fetch a pail of water. Jack fell down, and broke his crown, and Jill came tumbling after.’ It made me wonder why these British poems for the little ones had ‘fall’ in them. The children at that age may be just learning to stand up and falling may be very common… I was also a child at that moment, heavier in weight though, but practically a child in all ways, who had to be taken care of in all aspects. There was a lot of communication gap between hospital management and my relatives in the way the news of my fall was shared. My friends and relatives did the needful to tighten the screws at the hospital. The Administration department got a phone call from a leading newspaper in Bangalore. The newspaper asked them if they wanted it to report the news ‘A patient falls out of an ICU’ bed’. I was anyway specially attended as I was an ICU patient but now my support-team became very important in the hospital. I had an intense completion conversation with the nurse who was giving me a sponge bath when I fell. He was carrying the baggage of my fall. He said, “This shouldn’t have happened. This should never happen again. I’m very sorry.” I told him, “What has happened, has happened. You can’t rewind it and undo it. But you can be free of the baggage, that’s an unnecessary weight you would be carrying. Just throw the damn thing from your head and give me a big hug!” We hugged each-other and became best pals! I don’t know what he would have gone through while talking about my fall to the administration and doctors. We exchanged looks and waved hands when he was attending other patients and passing by the aisle close to me.
Chapter5: The Sleepless Nights – The Intense Meditations
The eagerness about my illness in the minds of my family members and friends, and my deteriorating physical condition was more than enough for them to take second and a third opinion. Harshada spoke to Dr.Palande from Mumbai, my sisters’ friends’ husband, a neuro surgeon and erstwhile Head of the Department at J J Hospital, Mumbai. A word went to my sons’ teachers’ sister; a UK based paediatric neurosurgeon, who was incidentally in Bangalore at that time. Geetu spoke to Dr.Sandhya, an anaesthetist at Rajshekar Hospital in Bangalore. My friend spoke to my friends’ friends’ husband, Dr.Janardhan, a neuro surgeon at Bowring Hospital, Bangalore. Dr.Krishnan, my neuro physician at Fortis, was kind enough to patiently attend calls from few of these doctors and was updating them on the state of my health. There were five family doctors from Mumbai and Bangalore who were ‘closely’ watching me. One is my uncle, Dr.Ramesh Acharekar; one is my cousin, Dr.Bhanudas Walawalkar; one is my other cousin Dr.Ravindra Narvekar; one is CFL-parent Dr.Vijaya Sherbet, the first one to diagnose GBS over phone; and Dr.Harshada Acharekar, my wife, who was watching from the closest quarters. There were many from the far quarters who were not spared. One doctor was my co-brother’s’ friend from Belgaum, one my friends’ friend from Aurangabad, this went on. The second and third opinion was, “there’s nothing to worry, GBS patients bounce back. Just the duration after they bounce back is different for different patients.”
The numbness had consumed me fully by sixth day of GBS and it continued to stay such for many subsequent days. I was having sleepless nights. I cannot blame it on the noisy ICU. It is difficult to pin point to anything in particular that would’ve made me sleepless. Isha Yoga’s Dr.Veena Akka suggested me to recite Omkar’s and chant ‘Brahmananda Swarupa, Isha Jagadeesha; Akhilananda Swarupa, Isha Mahesha’. Kaka Sahasrabuddhe, a yoga Guru and a healer from Yawatmal, Maharashtra, told me to do Surya Bhedan Pranayam, wherein I breathe-in for 1 count, hold the breath for 4 counts and breathe-out for 2 counts. Though he’d taught Harshada and me this, Surya Bhedan was to be done only by bachelors as it generates tremendous energy which is more useful being a bachelor. It’s offered at the feet of Lord Hanuman just before the wedding moment. I was getting an opportunity to do the Surya Bhedan due to my illness. Jyoti Mai, my sister from Mumbai, sent a message that I should be doing simple Prana-Mudra. This came from the science of holding mudras, or holding the fingers in a certain way. Harshada had intimated my spiritual master, Guruji Vinay Vinekar, who was in Chennai then, about the illness. He’d also told me to do the Prana-Mudra, i.e. holding your thumb-little-ring fingers of both hands together with index-middle fingers stretched out, as if you are pointing a gun. As another mudra to be done, he said, “hold the tips of your middle finger and thumb together for as much as you can. Then, touch the tip of middle finger to the bottom of your thumb.” I don’t know what this mudra is called. Bhushan picked up Guruji from his home the day he came back from Chennai, and got him to meet me in visiting hours. This fell on 15th Jan, day of Makar Sankrant which marks the arrival of spring. Seeing Guruji come to meet me, I was dancing within. We held each other’s hands warmly. He was in his usual outfit of kurta and veshti (white lungi) I could see his heart in his smile with his big eyes, looking at me through his glasses. He said something like, “Ashirwad, you can take this”. In December 1996 he had given me the most powerful experience of my life. In that meditation course I was filled up and oozing with energy. I was sharing with him how that experience is helping me now. He brushed that aside and indicated that that was nothing and is ignorable. I shared with my nurse how I have 2 mothers, one biological and one spiritual. Guruji told me to watch the sensations of the numbness, listen to the noises around, watch the thoughts come and go by, you just ‘be’, do nothing about anything. He said, “mind shall calm down.” He told Harshada, “you tenderly touch your palms on his feet and gradually move towards the head, daily, let the body feel the touch-of-love; and feed him 10-12 sprouted shoots of green-grams.” Harshada smuggled these into the ICU and I chew them with my right side incisors. He told me to do Sukha-Pranayam in whichever way possible. “If your thumb and little finger cannot close one-one nostril at a time then use the bend of your wrist to close the nostril. If you can’t alternate right and left side per inhalation and exhalation then take 10 breaths with right nostril, swap your hand and take 10 with left.” He repeated that I should do Prana-Mudra and other mudra by touching tip and bottom of thumb with middle finger.
With so many valuable suggestions having come my way, it was not at all difficult for me to spend the nights fruitfully. The IVIG injections used to get over at about 12-12:30 in the night. From 12:30 to 5:30am in the morning I used to do these meditations, pranayams, omkar, chants, back-to-back. The energy that got generated in those hours was distinctively different from the energy that numbness was sapping out of me. One was charging me up while other was draining me out, simultaneously; it was very interesting to watch it.
While all this was happening within, outside one Teacher from Isha, Dr.Veena, suggested Harshada to perform Devi Puja at Bharavi Devi temple in Coimbatore, Ajay did the required donation and did this offering on my behalf. My dad and uncles went to Nageshi, Goa to offer Abhishek to our paternal God and Goddess. Snehadhara’ parents and staff, my drum jamming buddies of last 2years, prayed for my good health. It’s a long list of individuals and groups who were silently working for me to get better.
After refreshing nights followed by a sponge bath at about 5:30am, I used to catch up with a catnap of about 20-30mins. Even though I was not sleeping enough number of hours, doctors advised me not to consume sleeping pills as I should be fully aware of my breathing. If there was any discomfort in breathing I was supposed to immediately raise an alarm.
Chapter6: IVIG - Harshada’s Grit - My diet - The Nurses
I thought IVIG, the injection to fight GBS, would be one large bisleri-like bottle that they will drip in an hour or two, but that was not the case. They injected 6 bottles of transparent fluid in about 5-6hours daily evening from 5pm. I don’t know whether to call it ignorance or knowledge; I was ensuring that the air-bubble doesn’t enter my body, but the nurses were doing a good job. These days there are automatic flow-control, time-keeping machines to minimize the human intervention. They would raise an alarm when the bottle was just about empty. These machines were more of a pain than reducing work. When IVIG bottle was attached to them they would create too many bubbles in the bottles and the pipes which are supposed to carry the bubble-free liquid. On 2 or 3 days the nurses saved a lot of time by bypassing the machine, and making it manual. I requested a nurse to show me the box in which the bottles arrived. It was a pleasant surprise to see the name ‘Reliance’ on it. My general perception about Reliance industries was more to do with unreliability but here they beat me hands down, it was from Reliance Life Sciences. Each bottle cost some change, bit more than Rs 16000/-. So, six of them injected per day would cost about a Lakh Rupees. The bottles were refrigerated and one after the other was brought from the fridge as required. They preserved the empty bottles, I didn’t know for what. On the day, after all the injections of IVIG were over, they counted 30 bottles just to show that they have done their job. Nurse said, “it’s a costly injection and we wanted you to be sure of its account.”
Harshada was amazing all throughout. She had accepted the fact as much as I had, and we decided to dance together in the whole journey. She connected the outside world to me, and the ICU world out. She was attending to many dozen phone calls and a hundreds of sms’s daily, especially while I was in the ICU. When I came to the ward she said, “one side of me was putting up a bold face but other side was sad. I cried while hugging one CFL teacher and let go of what I was holding back. It helped me unburden myself.” She was always flanked by three or four ready-to-do-anything people. A puncture in the car tyre was taken care of; monthly credit-card payment was electronically cleared by somebody. She received a snacks-box, sometimes a lunch box from somebody. I was well taken care of at the ICU but she was taken care of by so many beautiful people. My thanking them will always remain incomplete till my last breath, I owe them so much.
Harshada once said to me, “the strength in you helped me stand firm while taking many decisions.” After Humpty had a great fall, that is, after I fell down, there was a commotion among my support-team whether I should be moved to Apollo Hospital, next door. Harshada was satisfied with the ICU doctors and nurses and Humpty’s fall was an exception, with no damage done. She took a firm stand of not moving me out to Apollo Hospital. I second her decision. She used to tell me stories that her companions, the ICU-attendants, shared with each other. She said a few expressed their surprise at the number of people who came during visiting hours and the way she was supported by so many people. Harshada consistently did a small 10mins-pooja at home that I daily perform at the end of the day. After I was moved to the ward she had children back home who were staying with different CFL-parents on different days and were well taken care of. Lot of unsaid things were getting setup. Harshada’s one call to my sister, Jyoti Mai, and brother, Dr.Bhanudas Dada, in Mumbai use to cover 100’s of people in Mumbai. They never called Harshada, they called Mai or Dada and got to know about my progress. One call to Bhushan, from my friend-fraternity, would percolate the information to a dozen friends who were, in turns, supporting me fight GBS 24x7. Geetu was a frequent visitor, both in visiting and non-visiting hours, despite of her packed schedule. She kept information from the ICU flowing to the CFL-fraternity.
I had not brushed my teeth in ICU for many days. Doctors saw Harshada brushing my teeth with a baby-brush and suggested nurses that they should clean my teeth with cotton dipped in mouthwash-liquid, like Listerine. The nurses tightly wrapped cotton on a tweeser, dipped in mouthwash and brushed. The nurses brushed my teeth as they brushed themselves. Some were gentle and would cover all my teeth inch-by-inch, some were very rash and felt as if they were washing a bathroom, I’d to tell them be easy on my teeth. Harshada taught them how to use the floss and clean the gaps between the teeth, they weren’t aware of it. There was a half-barber who came to shave my beard in ICU. He came in hospital uniform. After shaving, I told him to trim my moustache, he refused. He said, “I shave off only beard, I don’t touch moustache or cut hair”, hence half-barber. He came once again in the ward to shave my white beard and make me look younger.
The nutrition-and-food department complemented the excellent team of doctors and nurses. The nutritionist asked me what I would like to have as my breakfast, lunch and dinner. They had a decent amount of choice. The first day started with full course, including chapati and rice. The next day I couldn’t chew the chapati. I managed with rice and curry. The third day I asked for mashed rice and mashed vegetables. The next day the strength in my teeth was not allowing me to grind anything. I requested the nutritionist to give me idly, dal-rice, vegetables all pulped in a mixer. The nutritionists kept changing, and mostly they gave what I asked for, barring one or two time. One nutritionist, Shalini, was reminded of her maternal place Jawaharnagar, Bhandara in Maharashtra when she heard Harshada and me speaking in Marathi. She wished me speedy recovery. I was aware that a well cooked and dry chapati can be powered in a mixer. Fortis canteen had never done this in the past. Upon my request they tried it but looks like it didn’t turn into power form so they gave me mixied-sambar-chapati, it was tasty. As the days passed I was gaining back oral strength. The originality of the cooked food was slowly being restored. By the day I was discharged I was eating regular rice, dal vegetables. l still wasn’t able to chew chapati.
One day Harshada asked me, “how are the nurses behaving with you?” I didn’t get the drift of what she meant. A decade ago, she was a frequent visitor to 2-3 hospitals in Pune, from Bangalore, to assist her father. He was a dialysis patient. She was carrying the memories of ICU in one hospital where the nurses were very rude and were resorting to bad words. My father-in-law was a thorough gentleman. He befriended the nurses and helpers and thanked and apologized when a nature’s call was not under his control. It’s not easy on the patient and the family to have abusive nurses taking care. It’s far from taking care. I never got this feeling at Fortis ICU, it was a stark contrast. There was never an element of hesitation or reluctance of any kind on their face. They nursed me like one would do for a new born baby. They gave me a sponge bath. They changed the frequency of my BP machine, from 15mins to 30mins, when it was not required and when my arm was uncomfortable. They brushed my teeth. They wrote a date on every new item, like cannula, they stuck into me and changed before expiry. My small job happened into a polythene bag attached to the condom-catheter. Nurses helped me change the condom-catheter and also helped me during the big job. Due to the reduced quantum of food I was consuming and slowed metabolism, I was not passing motion and had to be given enema. All this was done by these un-inhibiting nurses. They fed me the mixie-grated food, massaged me when the ants were numbing my senses, helped align my back on the air-bed. There were many moments when I wanted to pass gas, I use to tell them that it’s about to happen. I’m sure this alert would have helped them to take further action they wanted to. It was very encouraging to see most of these nurses at the ICU, they were untiring and relentlessly working; not much should be said about their four-digit or just the beginning of five-digit salary. They had a dream of going to Dubai, Doha and UAE. Hospitals in India were a stepping stone for them. Most of them were from Kerala. Naturally, their language of communication with each other was Malayalam. I learned about them while we shared our worlds with each other. I developed a bond with a few. They recommended me to watch a Malayalam movie, Drishyam. I have not seen it yet. I shared about my tabla class and drum-jamming sessions with them. I sang Hindi and Marathi songs for them in the ICU while they were sponging me at 5:30 in the morning; shared with them the meaning of ‘itni shakti hame dena data, man ka vishwas kamjor ho na’(Hindi), ‘mogara fulala, mogara fulala’ (Marathi) to the best of my abilities. I requested one to sing a Malayalam song for me but she admitted that she was more of a listener than a singer-types. Agl, Sheetal, Vinitha and Rajesh are the names I recall as they were the ones who were with me for last 4-5days at the ICU in their rotating duties.
Chapter7: A death in the ICU - Spirometer - Physiotherapy
The new area in the ICU I was shifted to, was like a war zone. Over a day I realised that I can’t expect quietude here. The other ICU area where I was moved in from was a peace-zone. Here one patients’ BP was going down and somebody else’s was shooting up. A Bengali man was admitted with rash on his whole body. He was closely monitored. There was one lady in an isolated area, down with swine-flu(H1N1). She was on a heart-lung machine, seems only machine in Bangalore and cost for just booting the machine to function was to a tune of few lakh Rupees. The head nurses were overlooking the patients from behind a large and high semi-circular table. Each patient was attended by an individual nurse. The doctors were not only attending the patients but also were looking at influential interruptions. A hefty person entered the ICU and was negotiating with an ICU doctor to get his heart-patient admitted in the ICU. The ICU-doc saw the reports and made it clear that the patient should be in Cardiac-ICU and not generic-ICU. He suggested very strongly to the powerful man that if there’s no place in Fortis’s Cardiac-ICU he should try in some other big hospital. Doctor tried to highlight the difference between generic-ICU and Cardiac-ICU and managed to convince the hefty man. There would be a tea-break at 12:00am in the night. This was the time I saw doctors and nurses taking a casual break of 10minutes from the routine. If a patient was to be attended to at that time, then they skipped even that tea-break
A man in his mid-sixties pointed to a bed diagonally opposite to mine and told a nurse, “she’s my mom.” He was her attendant. That Ajji (granny) must have been in her late 80’s. She had white shining hair, closed eyes with a certain kind of peace spreading over her face, and far too many wires, probes and tubes hanging around her. Her younger son in US wanted to meet her before dying hence she was on those tubes and wires, which was her support system, postponing her death. Her attendant-son negotiated with his siblings for removing the support system and letting her die peacefully. I was witnessing her ECG, the screen ticked right in front of me. The docs agreed to remove the support system. After a number of pipes were disconnected, doctors said that the old-lady would die in another six hours or so. There was a series of visitors who arrived in different moods, who touched her feet; a few shouted “Ajji-Ajji” but she wouldn’t respond. I was regularly monitoring her ECG-graph on the scope as I knew it was going to go flat that night. There was a nurse continuously with the old-lady, who had nothing much to do but just wait. Her urine bag had some urine in it, I wanted to see if that quantity increases when she breathes her last. I’d heard people saying that one excretes in the moment of death due to fear. That didn’t happen, looks like, the old lady died peacefully. The Electro Cardio Graph fell flat. One nurse shouted and made other nurse note the moment of death. It was 2:10am. Ajji had donated her eyes. There was a team of two who came in the night to scoop her cornea and took them in a black and unusually big box-bag.
There was a daily routine that one or the other doctor from their convoy did. S/he asked me to cough and show us how deeply can I cough, swallow, deep-breathe and bend my head forward. One of them used to do a coordination exercise with me. He would put his index finger at an arbitrary position in the air, I was supposed to touch my index finger, first to my nose and then to the tip of Doctors index finger. He then moved his index finger to a different point in the air, accessible to me. I should be touching my nose again and then his index finger again. I did as they said. By the day, I was noticing that my ability to cough was slowly weakening and my movements were getting disoriented. Dr.Padmakumar suggested that I start blowing air into and sucking air from a spirometer. That would serve two purposes, one is my lungs would get exercised and second I would know the amount of strength in my lungs. Harshada and I were clear that if I get on to ventilator it was going to decelerate the speed of my recovery. Fortunately, my ability to breathe, swallow and cough stabilized after 5 or 6 days in the ICU, it didn’t deteriorate further. The shutdown stopped and the restart had begun. As days passed, it only improved; spirometer was showing the lung capacity very clearly. I feel, the strength in my lungs compounded with IVIG injections were able to take on the intensity of GBS’s neurotic attack. It didn’t reach the point of inflection where I had to be put on a ventilator, thankfully. In my heart, I was aware of the strength that was built in my lungs due to Kapalbhati I was doing during Shakti-Chalan-Kriya since last 5-6 years, very consistently.
There was a team of 5 physio therapists who attended me after IVIG injections were over. They were led by Mujeeba, a thin, tall and stylish lady, with a shrill voice. Two out of this team came in the morning and two in the evening. I started squeezing the yellow sponge balls which had smiley’s printed on them, blowing and sucking air from the spirometer (a compact instrument with a blowing pipe and 3 balls of varying size which can rise and fall depending upon the air pressure in 3 columns), trying to raise legs, hands. I could barely press the balls. While sucking the air from spirometer I was raising the balls one and a half the column height out of 3 and while blowing it was only one ball half the column. I had lost the ability to move my facial muscles. At times I thought I was smiling but I realised that my facial muscles were not moving. The yellow-balls with smileys on them were my best buddies. I expressed all my laughter, smiles and joy to the doctors and visitors through possible movements of these balls using my hands. On second day one physiotherapist asked me, rather told me, that he wanted to make me stand. I reluctantly agreed; I felt my body wasn’t ready. The two of them made me stand with their hands in my armpits. The moment they tried to remove the support, I buckled in both my legs and before I could collapse like a tower-of-playing-cards, both of them held me. The whole team was very strict and were bending and stretching me to a point slightly more than I could bear. I think their strictness is a byproduct of non-budging patients that they may be regularly encountering. From fourth day of physio-therapy my body started responding fast. I wasn’t able to suck through a straw, in few hours, I was able to. My ward-room, number 767, had a big glass window on one side and a bed for another patient near the room entrance. I was in the middle of the room. Harshada and I decided that let’s request for a discharge the day I’m able to use a walker till the restroom. In my mind I was doing all that I wasn’t able to do, like stand up, walk and run. While therapists came twice I was instructed to do exercises two more times in a day. I was religiously doing it. One day Mujeeba got me to stand by the bed with support and slowly removed the support. I was able to stand again, after 11days, I was very happy, Harshada and Didi were thrilled. The next day she made me walk till the big glass window. Each step was only a couple of inches. I saw trees and houses after about 12days from seventh floor. Mujeeba told me, “my HOD was asking who is Ashirwad?, I’ve been hearing only his name since past few days.” Mujeeba was so happy with the progress and the way my body was responding, she said, “you are setting an example for other patients to follow. Keep it up!” She suggested that I should take electrical nervous stimulation for my facial muscle weakness and practice facial exercises by looking into the mirror. I was still wearing hospital gown. Physiotherapists had a full view of my different body parts while doing exercises, to which only my wife had a privilege to. My private variables had become public (private/public variables are computer jargons). Only consolation was that the public was limited mostly to hospital staff. Geetu jokingly said, “enough of flaunting in these backless gowns”.
There was one song on my mind that day, ‘Though all things perish from under the sky, music and dance shall live, music and dance shall live, music and dance shall live never to die.’ Geetu said, “All the Snehadhara staff members and many parents whom I’d drum-jammed with, wanted to come and meet me at the ICU.” She stopped them from flocking to the ICU and instead kept communicating my progress to them. I told her, “there’s one tweaked song which I want to dedicate to all my lovely ones at Snehadhara.” The song goes like this, “Though all things perish from under the sky. Music and dance shall live, (he)art and love shall live, stories and plays shall live, never to die.” My vocal chords were also damaged. I was able to go low in the pitch but going high was not possible, I think beyond G# of mid-scale, it sounded like a cat meowing.
Chapter8: In the Ward
After about a week in the ICU, on 16th Jan, I wanted to put a few more lakh Rs to ICICI bank. I told Harshada to login into SBI. I had my glasses on when she was typing onlinesbi.com. I noticed that I was unable to read the alphabets on the laptop clearly. I started playing with my glasses on and off; then by closing one eye and then the other. The eye sight had also deteriorated. Dr.Sheela called upon an ophthalmologist to inspect my eyes in the ICU. Dr.Usha, an old lady who seemed to be from the old school of thought, I mean, of type where ‘you don’t need medicines when you don’t need medicines’, came that evening with her compact paraphernalia of eye-test. After all her slow, careful and detailed examination she opined. She said, “the retina, cornea and all the parts of your eyes are in good health, only muscles have become weak. Your right eye has developed shortsightedness and left eye long-sightedness. The problem is with the weakening of your muscles.” She recommended artificial tears to keep my eyes moist as the eyelids had lost the ability to fully shut. The next day Dr. Sheela said, “in a normal Guillian Barre syndrome muscles of one’s eyes stay intact, yours is a variant called Miller Fisher.” So, it didn’t limit to GBS, which itself was hard to tell people what it is all about, in that 2 more capital letters got added GBS-MF. If GBS also stood for Girls-Boys-Syndrome, MF stood for Mother and Father J. About 10 days passed. I’d heard about Insync TV channel which telecasts some rare, some fresh music talent. While in the ward, I got glued to this channel. After using my pair of glasses, I had to move my face in many directions to align with the TV screen for a better visibility. Harshada and I felt that ophthalmologist Dr.Usha should take a look again at my eyes and check if the damage is arrested or not. It was hard for me to manually identify the improvement in vision with whatever I could see. I was not able to read, was just watching TV, watching the indoors and the outdoor, mostly the sky and the high-rise apartment next door, visible through the concealed glass window. I wasn’t getting out of the bed yet. On 12th day at Fortis Hospital, it was time for a football match with Dr.Sheela. I was able to barely kick in my bed, not on the playground, and definitely not a football. I was not sure how long would it take to reach the playground and play football with Arnav, my younger son.
I was back in the peace-zone ICU for a day before they shifted me to the ward. Harshada accompanied me on the first 2 nights in the ward, it was a weekend. She ensured that the treatment and physio-therapy is lined up well; and the nurses are familiar with the do’s and don’ts. I was still on a catheter. She was relieved for subsequent nights by my gang of engineering-friends. On Monday night Manish Daga came for a sleepover; we spoke about group-drumming, about career choices for growing children; his daughter was in Tenth Standard. Bhushan came for spending Tuesday night. He had a late night office-call where he was going to be only in listening mode. I shared with him how I spent my nights energetically in the war-zone ICU. Ashutosh was staying close to the hospital in L&T South City towers. He was there one night. Ajay, a possible candidate for sleepover had left for the US a few days ago for his office work. All these friends had created a Whatsapp group and were coordinating the dates and who-next, on it. One night Didi looked after me. I was a lone patient in the ward for first three days. On 4th day we sensed the preparation for arrival of another patient. He occupied the other bed that evening, post a knee replacement surgery. He and his attendants spoke in Kannada. Harshada and I could make out that he belonged to North Karnataka from the way he was speaking the language. His physio-therapist used to come twice daily, like it was for me. My fellow-mate used to scream and yell with the bends and twists that the physio-therapist was making him do. His physio used to count one to ten per stretch of a muscle, sometimes it was very fast and sometimes very slow; erudu(two) came 3 seconds after ondu (one), next count three more seconds later. The physio expressed a lot of care in the way he spoke numbers. His numbers were musically intonated; mine were military regimented, like on., tw., thre., fou… with abrupt endings. My fellow-mate showed significant loudness in his other natural tendencies. Generally, my sister Didi and my mom burp loudly, but this guy was many decibels louder. When the fellow burped while Didi attended me, I told Didi, “you are nothing” and then we cracked into laughter. This tendency also extended for him in the way he released intestinal gases, it was mighty loud. Let me not talk about my qualification in this area J.
One more implication of being confined to the bed was donning a tight pair of stockings till my upper thighs. They are called compression stockings. Nurses helped me wear those stockings; they ensured that there were no creases on them, especially when the doctors were to arrive to see me. These socks were helping me increase the blood circulation and avoid any possibility of formation of a blood clot; also called as DVT (Deep Vein Thrombosis). I wore them for about 3 weeks till I gave up using a walker; a week after discharge. The docs suggested that I could stop using them as I’d become mobile enough to have increased blood circulation. One day, while in the hospital ward, this Rs.2000/- pair of stockings vanished. My attendants Didi and Harshada searched for them all over but to no avail. After a little detective-thinking, we came to a conclusion that the ward-boy must have taken them away along with the changed bed-sheets. That came out to be true. The staff sorted the used’ bed sheets they’d collected that morning and after a thorough wash the precious pair of stocking was back onto my legs.
The first motion was normal, on second day at the ICU, 10th Jan, I was helped by the nurse to reach the pot-chair. I could wash. With very limited physical movement and reduced food consumption the motion took a break, a long break for 3days. Doctors decided to give me enema on 13th Jan. A nurse told me to be at ease and breathe normally for the enema liquid to go in. I held it for about fifteen minutes. Two nurses were needed to lift me and give me a bed-pan on the bed. They washed and wiped me. The motion again took a break for four days. This was the day I moved from ICU to the ward, 17th Jan, Saturday. Nurse Rajesh injected the enema but I couldn’t hold it for long. I asked for the bed-pan and thought all will go well like last time. I was half done and then I felt like a piece of s#%t of the size slightly smaller than a table-tennis ball has got stuck. It’s neither going in nor coming out. I called the doc and asked him what I could do. He told me to take the enema again. This time around I held it within for fifteen long minutes and felt relieved after the remaining half of big-job was done. In the ward I had to take it twice again, once on 20th and then again on the day of discharge, 24th Jan. I heartfully thanked the nurses every time they helped me. It was extraordinary to look into their eyes and thank them.
Since the day I moved to the ward, room 767, many people came to meet me in the visiting hours. Lalitha and Vasant, CFL parents and yoga teachers came on Tuesday, 20th Jan to meet me. They came with a dabba full of theplas, khichdi and chikki and a thermos full of hot tea. I was still on hospital food. My children, Harshada, Didi and many visitors relished all that they brought. I heard from Didi and Harshada that their dabba was like an akshay-patra, endless food came out of their box. While many were still enjoying their evening snacks outside, Lalita and Vasant accompanied me. It was the evening time when I was supposed to do physio-therapy by myself. Lalitha told me to do very simple exercises of gently stretching and bending different joints in my fingers, hands and legs. I was happy to be able to execute her instructions quite well, better than what I expected, while I was sitting and still confined to the bed. After some 15mins of exercises Vasant instructed few exercises. I was noticing that I was charging up with these simple little exercises, the way it happens when I do Surya-Kriya or Shakti-Chalan-Kriya which I’d learned at Isha Yoga. I later closed my eyes and stayed with the energy for some time. Lalita and Vasant’s visit was like a cool breeze in hot summer.
One of the head nurses invited one Mr.Anand, an ex-GBS patient, to meet me in the ward. He was a gym-instructor by profession. About two years ago, his GBS treatment had got delayed by a week. He was in ICU for 50 days. Per day charges for ICU were 7500/-, which straight away amounts to Rs.37.5L. He said “I had a bottomless insurance from my gymnasium. After discharge from Fortis, I directly went to Kottakal for ayurvedic massage. 60days after the massages I was able to barely move my index finger.” With my grey hair and moustache touching my lips and unkempt stubbles, tending more towards white, he mistook me to be much older than I am and asked if I was Harshada’s father. There were already enough stories about my grey hair. I used to take the airport bus (Vayu Vajra) concession when I was a frequent flyer to Mumbai. They discounted some Rs.70/- on return journey if you are travelling back within a month. A BMTC Ticket Checker had no clue about this concession scheme and asked me, “Sir is this concession for senior citizens?” There was one more story to replay and laugh to death. Thanks to my grey hair.
In this illness I realised that I had two bank balances. One with the money I was earning and other was a revelation of a bank account called a relationship-account. Though the cash in former was depleting the bank balance in latter was shooting to its peak. I was floating in the ocean of love that people offered me in these times. It always makes my eyes moist when I talk about it. There were many who asked for my bank account number for them to transfer money into my account but Harshada and I declined. I have a housing loan, called Maxgain, from State Bank of India which allows me to park floating cash, like salary. This liquidity in this account was meant for such contingencies and we were using it.
My office colleagues too came forward to extend their support. Many came to meet me in the ICU and in the ward. Their tone was, ‘there’s nothing to worry about at office front, and you take care of yourself. If you need money don’t hesitate to ask.’ My boss was in touch with Harshada as well as HR of my parent company. I’m a Contractor and not direct employee at Broadcom. I was happy to see my colleagues in the corridor and I excitingly waved to them while hospital staff was taking me from ICU to the ward. It was evening time when Mujeeba, physio-therapist came and tried to make me stand up for the first time. My boss was behind my bed, watching all the efforts that Mujeeba was putting just to make me stand. The legs continued to tremble and buckle. I gave up that day. Harshada told me that my boss was quite shaken to see me in that condition.
I was free of condom catheter just a day before discharge, and the urine pot was back, even at home for first week. On discharge I checked the detailed bill and was pleasantly happy that Fortis had not charged me for the Ortho’s visits who were invited to inspect the damage done due to Humpty’s fall.
Chapter10: Back Home
I arrived home on a wheel-chair. Geetu and Sarangan, her husband, came in their car after finishing a tiring sports-day at CFL. Bhushan accompanied us in his car. Harshada, Didi and I came in our car. Ravi, another CFL-parent, had already left the walker at home which Chirantan got till the parking lot of my apartment. I took the first step in my apartment exactly in the same place where I’d buckled 15 days ago, near the lift entrance, with the help of a walker. I was assisted by two to sit in the wheel-chair, which people wheeled in the lift. After reaching home I dashed directly to the puja-ghar, and said a prayer “sarve bhavantu sukhinaha, sarve santu niramayaha; sarve bhadrani pashyantu, ma kashchi dukkha bhagbavet; om sarvesham svastir bhavatu, sarvesham shantir bhavatu, sarvetsham purnam bhavatu, sarvesham magalam bhavatu; om shanti, shanti, shanti hi” loudly, loud enough for the vibrations of my vocals to reach every part of my being. It moved me. Geetu got the intensity of the prayer and tears were rolling down her eyes. Harshada and she hugged each other. Then we all sat in a circle and Geetu guided us through different meditative exercises which culminated with Kabir’s ‘moko kaha dhoonde re bande, mai to tere paas me.’ It was the same song that I heard on the first day in the ICU, the search for ‘moko’ or the nearest-one, continues!
By then, Sadanand, my neighbour had brought a blue-berry cake with a message ‘Welcome back’ and a flower bouquet. Every person who came to meet me home hugged me. Apart from my mother, my aunt in Mumbai, to an extent my sisters and my wife, I had never hugged a woman. And here there was no discrimination. I knew the hug was to the spirit of life that was dancing in me. Harshada and Didi did aarti after which I cut the blue-berry cake and we all savored it. Harshada and Didi hit the kitchen. Bhushan and Chirantan left to Sarakki Market to get fruits for me.
There were many who rushed to meet me once I was at home. They all kept the fruit basket happy. It was as if they had decided that apples were best for me. On a certain day there were so many apples that we could have started one apple stall in the apartment. Didi got an interesting idea. She peeled all of them, simmered them well with sugar and showed them the way into a bottle. I’m still relishing the apple jam.
I was supposed to be celebrating Sports Day at CFL the day I was discharged. Many parents told me it was a unique sports day. I missed it. While in the ward I had told Kamala, a CFL teacher, over phone that I shall be there in the school on Sports Day. She was extremely happy to hear my voice. I couldn’t make it to the school but I was happy to be back home.
I was able to sit cross-legged when I reached home. The next day morning I started doing Shambhavi Mahamudra Kriya. In three days I was able to sit in Vajrasan, it was a bit painful and tingling. Vajrasan is a posture where your legs are folded and parallel to each other and you sit on the heels with upper part of the feet touching the ground. I resumed Shakti-Chalan-Kriya which is done in Vajrasan, in the mornings and Shambhavi in the evenings. I attempted Surya-Kriya, a very slow version of Surya Namaskar, but my hands and legs were trembling. Surya Namaskars were doable. In about ten days my limbs steadied. Surya-Kriya became a meter to measure the strength in my limbs. My movements were very slow in the first week at home, with walker. When guests arrived to see me, instead of calling them to the bedroom, I purposely walked from bedroom to hall to exercise my legs. With both hands holding the walker, slow movements and somebody waiting for me outside; made me feel like a villain going to meet hero and the background music is playing, ‘tan ta taaan’.
I was feeling very thirsty during last few days in the ward and the thirst continued at home. A few sentences spoken over phone, a few steps I attempted to walk made me thirsty. Fortis’ Doctors suggested me to get my sugar level checked, which came out to be normal. My ayurvedic doctor suggested me to eat a lot of sweets, which helped. Didi and Harshada took turns and made a variety of sweets at home. In about three weeks the thirst came to normal. My meals at home were supplemented with a lot of raw, soaked and sprouted green grams (moong) and groundnuts.
I was 69kgs when I was admitted and was reduced to 61 on discharge, in 15days. There were many who said ‘WOW’ on hearing about my weight loss programme, they were interested in losing their own weight but they weren’t able to. The skin on my body had sagged when I came home. With time, the appetite improved and so did the weight. I was 63kgs on 7th of Feb and the weight got stable at 67 in a month.
At a first chance at home, I logged on to the office network and carefully read the Leave Policy. With my exceptional case of being off the office for such a long time I collected a significant number of LWP’s, Leaves-Without-Pay. While connected to Facebook a friend from Mumbai, Sharmila, started chatting with me one evening and enquired about my health. She was very happy that I was recovering fast. She said, “you know what?”. When somebody says that, you can expect some big news is on the way. “Sumati-tai Tikekar died of GBS. Though she was old, she was absolutely fit and fine. Then GBS struck her down, forever. ” GBS hitting mortality was a shocker for me. Sumati-tai was a well-known Hindustani vocalist and mother of famous Marathi-film industry actor Uday Tikekar. Sharmila is related to them. By this time, I’d heard about the seriousness of GBS but had never heard of anybody having lost life due to GBS. This was the first one.
A neighbour of mine, passed on a book for me to read on 26thJan, a few days after my discharge. It was one of those duplicated reprints with poor print quality available on the road side. I hadn’t still started reading as my eyes were not permitting me. And, since last few years I hadn’t read a book. I’m not like Harshada, give-me-anything-I-shall-read-it type. If somebody is very strongly recommending only then would I read. This book was idling in the hall for a few days, and then somebody picked it and left it in the bedroom. I began reading the news from the newspaper which had big size alphabets, mostly headlines. My eyes were getting better by the day. After about 4-5days, on 1st Feb I realised that I could read the book. One afternoon I picked up the book and started reading it. There were far too many characters right in the first few pages which I couldn’t relate to in any way. I shut the book and got into siesta. Next day I relooked at these first few pages and realised that there were also a bunch of words for which I would need a dictionary. A slow reading speed and my pocket dictionary enabled me go past a first few pages and the book started opening up to me; like a reserved person would be reluctant at first and then relate to you and then connect. The book was Harper Lee’s ‘To Kill A Mockingbird’. While I was in the middle of the book, big news appeared on the very first page of the newspaper. There was a likelihood of Harper Lee’s, in her late 80’s, another book getting published. She’d written only one book, for which she got Pulitzer award in early sixties. Hollywood had made a movie out of it, with Atticus Finch to be none other than Gregory Peck, for which he received an Oscar award.
Chapter11: Physio at home - Ayurvedic Oil Massages - Electrical Nervous Stimulation
Due to continued numbness, but of a relatively lower intensity, doctors had continued Neurobion tablets. Apart from this, there was no medication, per say. Doctors supplemented vitamins by D-rise powder and B-complex tablets. They had told that the major medication would be physiotherapy-physiotherapy-and-physiotherapy. 26th Jan onwards Fortis’ physiotherapist, Mr. John, started coming home in the morning for an hour session. The first suggestion that John gave after seeing my state was to give up using wheel-chair. I did. I started using walker to move about at home. I felt pretty robotic in my movements, slow and stiff. Arun, a masseur for children with cerebral palsy at Snehadhara, started working with me for an hour in the evenings. John’s exercises were pretty monotonous whereas Arun helped me slowly explore steps, do sit-ups, bend the back, do facial movements. In a week, I gave up the walker and started walking, not confident enough as mind-body coordination wasn’t still established. Mind thought I can take a step of 2 feet but body was allowing 1 feet and not in the direction in which it was intended. John broke his monotone after 15 days. By then Arun had taken me to the ground and we were kicking football and playing catch-catch with tennis ball. After 4 weeks I had regained good amount of strength in my hands and legs. I was kicking the football really hard. John suggested me to take up electrical-nervous-stimulation for my facial nervous weakness. He stopped coming after he saw that my locomotion had regained. Fortis’ charges were Rs.500/- per session. Arun was offering his services on behalf of Snehadhara. It was a token of love, me being a family member of Snehadhara. I mean it was freeJ. I’d never been to my apartment gym. Arun took me there and made me use a variety of equipment meant for body building. He made me ride a bike too, to check my ability to control and balance. I did well. After about 5 weeks Arun also felt I had built enough strength and can be on my own.
On one of the revisits to neuro-physician we asked if it is ok to go for ayurvedic oil-massage. Doctor said, “It will benefit, go for it”. After searching through my contacts, on 16th Feb a friend, Narasimha, recommended me to an Ayurvedic doctor. I consulted him in his private clinic. There started something which I’d never liked: application of oil, that too all over the body, that too by somebody, not self-application. I took medicated oil massage for my body. It was a different oil called ksheerabala, for massaging my face. The masseur put some fluid in my nostrils and made me inhale smoke of some medicated dry-leaves. The process had to be done on empty stomach. Oil massage was still bearable; but the ‘nasyam’ where they put 8-10 drops of ghee-based fluid in the nose was beyond all that I could have ever thought of. When the fluid came in my mouth, I started getting sensations of vomiting. There was nothing inside the stomach to throw up. My eyes were watering, I was spitting out the fluid that reached my mouth. I thought the story of vomiting would repeat on the 2nd day but surprisingly the body had got adjusted to this ghee-fluid. Harshada and I were of the opinion of not taking too many treatments simultaneously.
I had stuck a chord with everybody who came in contact with me during this illness. My masseur, at Yukti Ayurvedic centre, had two daughters staying in Kerala. He had worked as a masseur in Haridwar at Baba Ramdev’s ashram for four years and had come to Bangalore a few months ago. His daughter’s names were Afbia and Afb. Agl, my nurse at Fortis Hospital, pronounced as Ajeel and Afb, pronounced as Afbee, are the first name’s I’ve heard in 44yrs of my life which deny a generous use of vowels. They are Indian parallels of Vietnamese names like Nguyen and African names like Mbngwa.
After a week of massages was over I hit Vikram orthopaedic clinic next door and started taking electrical-nervous-stimulation for the right side of my face. It seems, there are a dozen muscles on the face which have nervous-motor-connections. Dr.Vikram, an orthopaedic-surgeon said, “the natural stimulation of the muscles of right side of the face had weakened. We stimulate them artificially for them not to retract, and allow the myelin sheath to recover.” Looks like, this was a very slow process in my case. I took about 45 minutes of these stimulations daily, each sitting costing Rs.200/-. The physiotherapist suggested many facial exercises and told me to do them by seeing in the mirror, like Mujeeba had mentioned. I often did them but without a mirror. They involved frowning the forehead, squeezing and closing the eyes-and opening them, holding the air in the mouth on one side of the cheek, flaring the nostrils, raising the cheeks with a smile. The weakened part of the face was taking some 3-4milliAmpere of current when we began. I first thought, as the sensitivity increases the amount of current I am sensitive to would decrease, but the physiotherapy measure was opposite. As the strength in facial nerves and muscles increase the amount of current you can take increases. In about three weeks time I was able to take current impulses of 7-8milliAmpere. On one Saturday I went for a physio session in the morning instead of evening. I had finished my Shakti-Chalan-Kriya followed by breakfast. An evening before the current I was able to bear was 6-8milliAmpere; but in the morning, after kriya, the same points were able to take 8-11milliAmpere. After about a month it rose to 8-13milliAmperes. The facial wrinkles on frowning, nose flare and cheek muscles appear to have recovered but still there is a weakness in the right side my lips and right eyelid. It was hard to hold air in the mouth and right eye kept watering. I was putting artificial tears to keep the right-eye moist. Looks like, I’d not thanked my eye and lips enough. I don’t know.
There were different types of ‘pathies’ that I was on at different times. I consumed allopathic medicines at hospital, had physiotherapy at home, ayurvedic massages at parlour, ayurvedic kashaya (juices) and electrical-physiotherapy; things seemed to have stopped at that. I’ve a bro in Mumbai, engineer by profession, but a hardcore researcher in any subject that he touches. After learning about my facial weakness he suggested me homeopathic medicine. His sms said “Causticum 10m, in wet dose of 10drops in half cup water once, repeated after 4 days.” I haven’t tried this so far. My ayurvedic doctor suggested a bunch of protein and nutritional products from Amway, a network marketing company, which I am consuming. They are very costly. By chance, if a tablet falls from my hands, I jokingly tell Harshada, “Thirty Rupees note has fallen down.” I pick it and pop it with water.
After finishing the classic ‘To Kill A Mockingbird’, I felt like continuing with another book. There were 4 books, written by Mark Twain, lying in Chirantan, my sons’ bookshelf. They had been lying there unread for more than a year and a half. When I started reading Mark Twain in the past, I couldn’t finish reading more than a page. After having read Mockingbird, I got introduced to the way Blacks in the US speak English. This helped me graduate to read and appreciate Mark Twain’s ‘Adventures of Huckleberry Finn’.
Chapter12: Insurance -Drum Jamming - Back to Daily Routine
When I was admitted I wasn’t very clear about my company’s insurance policy. Harshada found out that I was covered for Rs2L from Star Health Insurance Company and she could make it cashless by doing required formalities with the hospital. Vinayak, my co-brother, had brought Rs1L cash which he paid off at the hospital accounts. Later during the week he paid Rs 1.5L more. I still owe him this 2.5L. The total bill from Fortis Hospital had summed to Rs.7.7Lakh. Rs 2L transferred from SBI loan account to ICICI on second day after admission was still left unused. I paid up the remaining 3.3lakh partly from ICICI and remaining from my SBI loan account. My family was covered for Rs.1.5L by Oriental Insurance Company, 40,000 of which were claimed for Chirantan’s accident in October, 2014. After GBS, I realised how less Rs.1.5L coverage was. Harshada communicated with insurance agents, Third Party Administrators (TPA’s) several times. Didi and she went to Star Health for documents asked by Oriental, to claim the remaining Rs.1.1L from Oriental. Once the money was deposited in my SBI loan account my agent found it out and called me up. He was an old man, probably in his early sixties. I’d been renewing my mediclaim insurance from him since last seven years. Mostly Harshada spoke to him as he spoke only in Kannada. I use to talk to him in English and he used to reply in Kannada. When he called me after deposit of claim amount I found that he was talking fluent Hindi. He said, “Saar, you got your money, khushi khushi me kuch de do (in happiness of getting the claimed money give me some of it). I’ve spent money on petrol for my scooter. Give me some money for my service offered.” When I told him I’d spent Rs.8L and am still spending on my treatment, he said, “That’s your problem, you please give me money for my tea-coffee.” I was very upset. I told him, “I am not going to give you a single paisa.” The next day I wrote a complaint to the Administrative Officer (AO) of Oriental Insurance Company and they were prompt in responding to my e-mail. He was taken to task. The agent then called me and started apologizing in his sugarcoated tone. One day his son called and asked for forgiveness. I wrote back to the Oriental AO and told them to sensitize him enough and not take any action against him. I was in a mood to fill up a two-liter soft drink bottle with petrol and give it to him, but left it just as a thought.
Coincidences never cease to exist. In the third week of January, while I was still in the ICU, Chirantan had his planned study trip to Wynad in Kerala. He was heading to GBS, Gurukula Botanical Sanctuary a manmade exquisite destination for botanists from all over the world to visit. He was to go there for 15days from his school. One GBS-illness had come to meet me, and here my son was going to an absolutely unrelated GBS-destination. This was the first coincidence.
After a few days passed by at home, Mai disclosed a second coincidence. A distant relative of ours was admitted to ICU of Fortis Hospital, Mumbai, just four days after my admission to ICU, for the same illness I was down with, GBS. Unfortunately, her lungs too were attacked and she took longer to recover.
On 4th February, Jyoti Mai flew from Mumbai to meet me. She saw me in my robotic way of actions. She came with very tasty and wholesome laddus made of green-grams (moong). These laddus had a greenish tinge of the skin of the pulse, with a small quantity of eating-gum and dry fruits. There were so many laddus that we all ate them for many weeks. A month ago I’d told Geetu that I’ll be able to take up drum-circle session at Snehadhara on 7th February, and that day had arrived. Didi and Mai didn’t want me to conduct this session as it would be tiring for me, Harshada was in double mind. I wanted to go for it. I took a concept called Pacing from hypnotherapy and planned a drumming session around it. I assured my sisters and Harshada not to worry, and said “I shall take it easy”. Both Didi and Mai decided to join me for the drumjam. They had only heard about my drumming sessions, this was the first time they were going to be part of it. On 7th morning we three siblings reached Snehadhara, by auto-rickshaw, which is fairly close to my house. At Snehadhara it was an altogether different scene for me. There was a bold rangoli saying ‘WELCOME ASHIRWAD’ outside the main door. I was stopped at the gate, Uttara, one of my favourite participants of drumjam sessions, came out with an arti with burning camphor kept on a coconut, followed by an arti with kumkum-mixed-red-water. They call it ‘najar utarna’ in Hindi, done for an evil-eye not to touch me and for my good health. The warmth of the welcome welled up my eyes. Both Didi and Mai were appearing to be like my personal bodyguards. With this gesture of Snehadhara their refusal mellowed down. Mai was crying behind me, she was touched. The drumming session was light on me and I ended the Pacing exercise with all the participants locking their inhalation and exhalation to a particular rhythm.
I represented Snehadhara for leading two drum-circle sessions at Kere Habba (Lake Festival) at Puttenahalli lake. These festivals are celebrated with a hope to restore the past glory of lakes in Bangalore. The microphone on which I was making announcements and sounds like ‘bam chiki chiki bam’ clearly caught the weakness in my lips which was not otherwise audible to many whom I spoke to.
At a CFL PTM (Parent Teacher Meeting) I was carrying a half-smile on my face. If I laughed, only left side muscles showed that I laughed, the right side of my face wouldn’t move. I told one parent, “Michael, my left half laughs, the right doesn’t.” He said, “But, I see a full smile.” His statement touched me, he saw beyond what his eyes could see. With electrical nervous stimulations on my face and nasyam, which involved ayurvedic facial massage and cleansing of nasal path, a lot of control came about on facial muscles. Still I was noticing two issues. My right eye doesn’t shut fully while blinking, tears gushed from the tear-glands to keep it moist. And my right side of the lips was weak, they were still drooping. I couldn’t hold water or food tightly, a small portion slipped off while chewing food or drinking water. After meeting the neuro-physician and ophthalmologist they said “this is a very small problem. What you have come out of and are fully functional is commendable. Give it its time, it will heal”
When I resumed office from March, after 2 months of leave, the company Admin was kind enough to extend the company transport for me. It is limited to employees and not extended to contractors, but they considered my exception.
Many said, “it was the right time at which the things fell in place.” Many doctors said, “You are lucky, you should thank God.” On the day GBS struck my right leg down, Harshada felt like calling Dr.Vijaya at a right time. Dr.Vijaya diagnosed over the phone at the right time and shared the intensity of it. We reached SHRC to meet Dr.Nalini at the right time. We hit Fortis Hospital at the right time. The neuro-conduction test to confirm GBS was done at the right time. And IVIG was injected at the right time. The whole space and time, CFL fraternity, my friend-fraternity, my relative-fraternity, my office-fraternity and I were in synergy with each other. For people who saw me during the peak of my illness, it appeared to be a terrible experience, but if you ask me, I would say, “it was terrific.” Not that anybody should go through it but I have no regrets of what I attracted. My yearly medical test was due since few months and it got done at Fortis, just that the cost was whooping Rs.8Lakhs and still counting J Now, even the face has mostly recovered, just that ‘mai dayi aankh nahi maar sakta, ,aur siti nahi baja sakta’. I can’t wink my right eye and can’t blow a whistle J Guillian Barre Syndrome, Jai ho!
मनोबुद्धयहंकार चित्तानि नाहं, न च श्रोत्रजिव्हे न च घ्राणनेत्रे । न च व्योम भूमिर्न तेजो न वायुः, चिदानन्दरूपः शिवोऽहम् शिवोऽहम् ।। 1 ।। )
न च प्राणसंज्ञो न वै पंचवायुः, न वा सप्तधातुः न वा पञ्चकोशः । न वाक्पाणिपादं न चोपस्थपायु, चिदानन्दरूपः शिवोऽहम् शिवोऽहम् ।। 2 ।। )
न मे द्वेषरागौ न मे लोभमोहौ, मदो नैव मे नैव मात्सर्यभावः । न धर्मो न चार्थो न कामो न मोक्षः, चिदानन्दरूपः शिवोऽहम् शिवोऽहम् ।। 3 ।। )
न पुण्यं न पापं न सौख्यं न दुःखं, न मन्त्रो न तीर्थो न वेदा न यज्ञ । अहं भोजनं नैव भोज्यं न भोक्ता, चिदानन्दरूपः शिवोऽहम् शिवोऽहम् ।। 4 ।। )
न मे मृत्युशंका न मे जातिभेदः, पिता नैव मे नैव माता न जन्मः । न बन्धुर्न मित्रं गुरूर्नैव शिष्यः, चिदानन्दरूपः शिवोऽहम् शिवोऽहम् ।। 5 ।। )
अहं निर्विकल्पो निराकार रूपो, विभुत्वाच सर्वत्र सर्वेन्द्रियाणाम् । न चासङत नैव मुक्तिर्न मेयः, चिदानन्दरूपः शिवोऽहम् शिवोऽहम् ।। 6 ।। )