Life can be tough, difficult and totally unpredictable but ….. NOT impossible!

Each one of us has their own share of highs and lows in this life, which is truly unique in its own way. At the same time, I believe knowing others’ journeys, provides us with lot of strength to realise that we are not the ‘only one’ traversing this unusual path . With this thought, here I am, Satvinder Kaur, making my first attempt at writing.

This is NOT a journey to share problems, rather how to overcome them.

I tried describing this journey in 3 sections and when you read the last section, I wish it may help you to see problems differently and bring smile on your face.

My life’s existence i.e. my birthday, falls on same day with Mumma & Papa’s marriage anniversary, that may be the sign that no-one’s journey is complete without each other, hence you will find this write-up flowing in two streams crossing each other.

Beginning

Going back in time, my parents worked in 9 to 6 Govt job. They both carried untiring attitude, faced their big share of unlimited hardships which is un-explainable. They started from small jobs, stayed for five years in all in one rented room without electricity/water and then reaching to the stage of building their own house with higher education of children along with their own retirement from Govt services at respectable positions means a lot to me.

We(myself with 1 brother and 1 sister) were blessed to have such a loving mother who was extremely caring, positive and lively person throughout her life. My friends used to envy me for that kind of mother. We all FIVE members of the family were like friends, no hesitation at any side. I can’t think of any moment where Mumma sat and preached us, rather she lived by example. But I do recall Mumma’s comment whenever we fall into dilemma about anyone, “ be there with someone in their dukh(sorrow), without thinking if you were part of their sukh(joy) or not”. And singing those oldies filmy songs with full lyrics in kitchen, with the background music of Mumma’s finger tapping on the glass, were one of those timeless moments. Those were so beautiful and lovely days.

Coming to me, I was a simple girl who was studious, emotional, introvert, held minimum social network and was encapsulated in her own cocoon. This is letting me remember of a college event where I happen to receive the title “If Silence is Gold, you are a millionaire Satvinder”. At the same time people close to me were aware, that I was also headstrong and always fought for the ‘right’ in every sphere of life. Next came the phase where I was establishing my career, dealing with usual life challenges, while my parents were looking for an appropriate match for me.

Years passed by and in Feb 2005, I got a job at a reputed MNC. I insisted Mumma to retire voluntarily now and lead a resting life, as she kept sharing about regular pain in her knees due to continuous sitting in chartered bus to office. She agreed to it after repeated push. It was a big shift in her routine of 35+ years, still she maintained a calm and active life. Soon, my brother got married and thereafter in a year my niece — a lovely princess was born. I became more close to Mumma day by day and sensed her being in some kind of stress which she never reflected to outside world . With beginning of 2008, regular pain in her knees now aggravated into overall weakness and bit of changes in voice. After visiting multiple doctors, we were shocked to know that Mumma got diagnosed with an unknown term called ‘ALS’ (Amyotrophic lateral sclerosis)- world’s worst, incurable progressive neuro-degenerative disease, with a lifespan of 2 years for >95% cases. Those who know the famous ‘ice bucket challenge’ or Stephen Hawkins may have heard of this term. Nobody knew at that time that this mysterious term has potential to move our life upside down!

We left the doctor’s room with a strong advise “ Today is better than tomorrow, live for today”

No words can explain the emotional turmoil and how shattered I lived for the next few months. However, as it is said “ You never know how strong you are, until being strong is the only choice you have”.

I could not locate any patient to discuss the unforeseen challenges of this disease. I started ‘working from home’ (WFH option available in my company) thereon, which allowed me to balance work and life in these extreme situations. Day and night I was committed to myself in researching remedies for this incurable disease on the internet. Besides the never give up attitude of our mother who knew about this diagnosis from beginning, my biggest support and strength has been my younger sister, Sukhvinder. Facing this challenging situation together, bonded us more than ever.

(Note: We/us stands for the two-’Myself and Sukh’ in all the content below)

As various possible options, We tried our level best to attempt all kinds of alternative treatments, ranging from medicines in trials to homoeopathy, ayurveda, unani, spiritual, reiki, panchkarma massages, physiotherapy and many others, including travelling far off to the core of villages for miraculous cure. However, progression of this devil didn’t stop. I remained glued with Mumma all day and night. It was such a helpless and heartbreaking phase of seeing her deteriorated inch by inch every day. Later part of 2010 when we opted for PEG procedure, Sukh left her demanding corporate HR profession . Within 2 years of her diagnosis Mumma was almost paralysed, bedridden and put on a ventilator during an emergency situation.

This was the time when we were exposed to the truth about commercialization of hospitals and medical services. It took us hard time to get permission to stay with mumma in that ICU room. Me and Sukh alternatively for every 2–4 hours used to stand in the corner of the room, half hidden from everyone. We witnessed numerous cases of people who lost their lives in that multi-bedded ICU due to the negligence of doctors and nurses. When I raised voice, I was threatened indirectly. This situation is actually not specific to this hospital but with plenty of others- irrespective of how reputed they are. This we learnt through our own experiences and interactions with many other patients over this whole journey.

In doctor’s opinion Mumma was just a body with nothing left in her to survive. This pursued me to study about the ‘ventilator’/’Home ICU’ setup on my 2 inch mobile screen from worldwide sites like patientslikeme.com and many others during our stay in that dreaded ICU. No-one in the medical fraternity was in favour, rather everyone said “You can’t keep a ventilator at home in India!!”. Many of them often made fun of both of us, when we bought a ventilator. We got some feel of the ICU procedures, however, there was no support or guidance on any query we had from doctors and nurses anytime.

On 12th December, 2010- it was Mumma’s birthday that day, we finally went ahead with this life-changing decision. After having a cake cutting celebration in the ICU room, we wanted to fulfill Mumma’s desperate wish to come back home (even if it was for one day!).

We tried to interview various nurses, however, on the very first day of the duty when I saw trembling hands of nurse doing critical tracheal suction, I took the charge! Both of us were on our toes, hundreds of unknown procedures were headed our way. God helped us to meet ‘Ajin’ initially, our saviour in getting aligned us with this new role. We needed to be vigilant at all the times. Sleepless days and nights continued for a long time after this, until we made sure that we could sustain this position for sometime.

As days, weeks started to pass by, we gradually started preparing schedule for our ICU@home setup. There is a Japanese word called “kaizen” which means ‘continuous improvement’ and that explains our progress. Every day, every week, we both were critically examining, improvising and re-setting another refined level of doing the same procedures. Those medical professionals who seldom visited us, usually left with amazement by the quality and logic behind our state of procedures. When things started stabilizing in few months, we thought of stabilizing ours. We hired a 24/7 house help to support in household chores. In 2012 Sukh found a job at a reputed school within 2 km of our house, so anytime she can rush back if needed between that 8am-3pm schedule. Starting 2014, to ease my socially cut-off life, I started visiting the office ‘once’ per week/fortnight depending on the situation, thanks to all support from my helpful managers and supportive colleagues in the project team. Thanks to my sister’s school Principal, who supported us to allow her absence for that day when I visit office.

I strongly believe that we achieved all this due to God’s blessings. He always balances out his children’s life. If He gives challenges in personal life, then He also balances it with a good professional life and vice-versa.

Nevertheless, I tried returning my thanks to my company by exceeding expectations at project deliveries, completing my next career goal of industry wide open group L2 certification and continuously adding list of Give-backs- be it publishing disclosure, certification’s reviews with whatever time I could fetch from our strict 24*7 daily schedule. Likewise, Sukh also left no stone unturned by working hard with sincerity and became an asset for the school in short time.

Despite we took utmost care of keeping everything as backup and its backup’s backup, still it was impossible to predict everything. Many a times it was required to rush out around 2 AM at night, there Mandeep (our brother) had been a great support during those times and other occasions including his daily care and time towards Papa’s difficult routine. Also whenever we needed, our bhabhi also came up with her support.

My life was enclosed to Mumma’s room mostly. Mumma was part of each and every conversation/ decision, like she used to be before this illness. We tried that celebrations became a regular routine in Mumma’s room. This remind me of the day when we celebrated our nephew’s (who doubled our joy) first birthday function, within 20 days of reaching home on Ventilator. She had loved everything thoroughly and didn’t stop smiling. She lived every minute of this life in the home atmosphere and enjoyed seeing her grandchildren around every evening.

Our wish to have kids have been somewhat fulfilled with a role reversal in this period with Mumma and Papa both assuming themselves as children and we became their parents. Like any mother understand her infant baby needs, the same way we used to know everything by seeing expression in Mumma’s eyes.

Mumma used to watch religious programs, Salmaan Khan movies, The Kapil Sharma Show, etc. and she especially enjoyed watching Big B, Amitabh Bachchan. That persuaded us to share this rare admiration by writing to AB Sir and we were pleasantly surprised and honored to receive a personalized letter from him in response in 2017. Reading the special letter brought unique sparkles in Mumma’s eyes. ​​

Times like these help one learn the greatest life’s lessons. Besides that, we were fortunate to meet those unknown people which became our real support ranging from vent clinical specialists, suppliers, service centers, technicians who gone beyond their call of duty and genuinely helped to ease our journey.

With time, we moved from thinking “Why it happened to us” to “Let’s work towards helping others in managing this devastating disease”. This way God helped me in finding my purpose of life. In 2015, we started penning down our knowledge gained in this period on alslifemanagement.weebly.com, built videos, created ‘ALS care & support WhatsApp group India’ for sharing our learnings with others. Gradually with time, CALS (Caregivers of ALS) and PALS( Person with ALS) in India started connecting to these platforms one by one. Now, gladly, this ‘ALS C&S’ family is empowering hundreds of its members with required knowledge which is continuously growing everyday with each other’s experiences. This spread of information is helping all to continue in this tough journey TOGETHER.

With God’s grace, we completed almost 8 years on Ventilator 24*7 at home (without any doctor or nurses at our home; neither took Mumma to hospital again anytime)..this might be the first such case in India.

During these years, Mumma was completely paralysed except the movement of her eyes. She couldn’t speak or eat (feeding via PEG), however, all her senses were intact (and NOT on vegetative state!). Our courageous mother was there in front of us smiling through her eyes and giving nod for the decision taken for her life sustainability all those years.

This strange journey of 11 years with ALS, that envelops unlimited experiences/stories about unfamiliar challenges, round the clock procedures, many life threatening situations, several instances of out of the box thinking to resolve situations or some of the most memorable, fulfilling and enjoyable moments. If I start documenting them, this write-up can go on for 500 pages or more and still can’t be finished, so I am taking a pause here.

Our mother left for the heavenly abode in September 2018. After battling with ALS for so many years, she always had tremendous positivity on her face. She has been; and will always be; my source of strength to ‘ NEVER give up ‘ and progress continuously. By burying all our pains, we continue to cherish all memorable moments, we built during this period.

Glimpses of these beautiful moments can be viewed in our short YouTube video created on the occasion of Mumma’s 7th Birthday on Ventilator.

Another chapter of my life.

Year 2018 — Besides the rare journey of mom’s ALS, my life had another surprise stored for me- Cancer!

After spending 10 years in critical home conditions, I was single, unmarried, yet living a stable and satisfied life. I had kind of adjusted with the way life was en-route to discovering my own discrete path, slowly and gradually.

I had never imagined that something like Cancer could have ever happened to me, as I have always lived my life with utmost care, precaution and specific value system inculcated from my mother. I never drank alcohol, lived a vegetarian life, never smoked, hardly had junk food on my plate and always enjoyed oil-free, non-spicy food . I was hardly exposed to radiation or pollution (air purifier was installed at home), lived a disease-free, medicine-free and healthy life till date. Followed path, Sikhism and completely believe in God. Still, I was diagnosed with this dreadful disease.

This reminds me of a dialogue from the famous movie ‘ Queen’. When Kangana Ranaut in the movie got drunk and begin with uninterrupted nonsense stuff “ Mera haal na Gupta uncle ke jaise ho gaya hai. Gupta uncle ko na cancer ho gaya tha. Unhone kabhi sharab nahi pi, cigarette nahi pi, phir bhi cancer ho gaya. Isse accha toh pi hi lete “. This ridiculous dialogue makes me laugh now. But, I still continue to live in same way, as I believe getting high in life is true only from one’s real happiness and not from the pseudo one(through drink). However, no offense to people who drink though.

Actually, I took the charge of investigating and consulting doctors to find the reason for a very tiny swelling (<1 cm). Multiple doctors that I consulted for few months, still could not find any valid reason. In January 2018, when I finally got that report, I was shocked, devastated!. First the question, ‘Why me?’ and then hearing the word ‘Cancer’ made me feel like I am going to die soon (as what is commonly perceived in our society). While doctors were happy that it is the commonest type and curable. Still, my mind got flooded with negative thoughts and was extremely worried about Mumma and sister. Somewhere my selfishness also shouted from within me, “ You have been waiting long to live your life to its full potential, and here you are dying soon “

Our emotional turmoil has returned, and we both kept researching on the internet for its miraculous solution. We read that chemos are poison; radiation burns; doctors are all fooling us; eat vitamin B17; drink carrot juice; laws of attraction works; all these opinions were doing rounds on the web. After engulfing in such stories for days, I was totally confused whether to pursue medical treatment or not. Thankfully, my sister’s colleague Ambika visited us and shook our mind for the better.

I stood up and reached to Mumma and asked her whether I’ll be fine. It was quite unusual as the last few months — these responsive signals were not coming very promptly, and then, two times Mumma gave clear signals that I will be fine after the treatment! When I got this assurance from Mumma, I promised myself that I won’t turn back. And later, after seeing thousands of people, ranging from the age of 6 months to an 80 year, suffering from the same disease during hospital visits, I felt confident that I was not alone on this path. I finally got over the stigma around Cancer that was created by the society and finally accepted the word ‘Cancer” for what it is i.e. just another disease which has a planned treatment and a beautiful life after that, if diagnosed and treated well in time.

Coming to personal front, I always enjoy watching sensible, funny, romantic movies and melodious songs from the artificial world of cinema, but in reality never became part of any ‘love relationships’ all my life (sounds unbelievable in the current world, isn’t it? When nowadays even teenagers have love relationships so casually). May be due to the predestined priorities planned in my life OR scared of tricks creeping nowadays in relationships of the fake world. However, getting to know about other cancer winners’ journeys broke this notion of mine. I was amazed to know that how much their husband/partner had continued with increased love and support which helped patients to overcome the trauma of this disease and made them feel ‘ALIVE’ in this invaluable life. I am quite happy with my single and independent life, but who knows, I may meet once, such companion in my life as well :-).

This period also got me connected to my guardian angel (my Mumma’s cousin) who showed me path and gave his blessings throughout. As the treatment began in Feb 2018, everything related to Mumma’s procedures were on my sister’s shoulders. She opted for a break from her job and took care of me in this treatment along with Mumma’s critical care and adding to this our papa’s look after (as being unwell from many years, he needs assistance in each and everything), Sukh went through quite a challenging time. I used to see how silently she used to get out of bed several times throughout the night so as to not disturb me. She used to wake up our house-help for support to do Mumma’s regular but important procedures. I am grateful to be blessed with such a loving and caring sister, she is like a life partner!

Before stepping out from home​ for chemo sessions along with our brother, we used to do every possible procedure, so that nothing is required for at least 2–3 hours after we’ll leave So, rather than worrying about chemo- our attention was towards our mother. At hospital, we tried that chemo sessions should finish soon and kept continuously monitoring Mumma over CCTV connected to our phones to guide for any care at home, while we are away.

Then there came a time, to loose my hair. Being a Sikh, my hair was my asset. They were unique, as long as floor length. However, just after a few days of my second chemo, I lost all my hair and transformed into a new me, bald ( and beautiful!). My cousin sister , daily used to video call me at 6 am from the Gurudwara to allow me to take blessings throughout my treatment. She always tried to cheer me up by prompting the famous funny action “Arey Paa aa gaya!” (remember Amitabh Bacchan’s movie?)

​Then I found a fantastic wig, which gave me a complete new look. It wasn’t that I was conscious about my baldness (as I usually roam around the house like that) rather I took this as God’s given opportunity to experiment with my look which otherwise could have never happened in my life. People often asked why I had cut my long hair but with a pause used to add, “ but zyada smart lag rahi hai, continue in this “ . That gave me confidence and a new personality!

Professionally, I have been working for home for these 11 years (and till now as well). However, during 2018, I took almost a year-long break from my job and to my surprise my company allowed me to take that period of absence with an uninterrupted salary, based on an existing medical leave policy. After initial difficulty of every chemo, I continued going for regular walks in the park (while many other fellow patients generally remained confined to their homes). Soon within 2–3 days of each Chemo session, I used to pick up medical procedures of Mumma and other kitchen stuff with support from my sister, till the time next chemo cycle brings me to bed again ..temporarily.

It wasn’t really a smooth chemo ride. I vomited, developed mucocitis, had body aches, bloated stomach and spent uneasy days, but “ all these side effects were acceptable in lieu of a cured life” . Slowly, I got accustomed to these chemos and whenever I tend to feel low, I start to compare my situation with Mumma — then mine seemed negligible in front of that and I was ready to bounce back!

Such struggling phase generally help one to get clarity that who actually in your circle are truly concerned about you and I am blessed for those very few friends who became my strength in this testing phase. After all of my chemo sessions got over, I thought of a vague idea to steal a single day from my own life and take a flight to Mumbai and stay at my friend Ruchi Pathak’s place alone very next day(first time ever). Her husband was helpful to escort us to see those places I wished to visit in my short stay. Sitting on the Juhu beach, feeling the droplets from the sea on my face and the joyful dance at home with her two loving daughters was completely fantastic. I treated myself and my friend to the breakfast at Taj, and prayed at Siddhivinayak with an impossible wish. Lastly on the Marine Drive, it was so windy that my wig almost flew away! I feel like I lived my entire life in that one single day.

Back home, during these days Mumma’s condition was getting deteriorated. Then, on that strange long night of September, it seemed to be destined that Mumma left to reside peacefully with God. She looked so calm and relaxed, we could have literally said that she was “resting in peace”. Without all those tubes and machines, when we did final sponge of Mumma in the same regular way that morning, it was just so different, she was looking like an angel. Frankly, instead of feeling sad, we both strongly believe that Mumma is in a much better place now, sipping tea, eating and chatting (after years and long fight with ALS) with our Darji and Biji in another world. Every night at sleeping time, we always used to kiss mumma on forehead and say ‘Guru Rakha , Rabb Rakha’ and hold her hands to our head to take her blessings in return. Today as well, I continue to feel her hands when I wish the same to her every night.

Later, I resumed with the treatment and got admitted in hospital as per protocol. Those were very unusual days since we both were outside our home walls together, after years and years.

Despite I received complete pathological response from chemos which is a rare thing (sometime I doubt whether I actually had cancer? :), I was still need to finish the whole course of treatment by following radiation as last phase. Here, I wasn’t very confident with a particular decision taken by ongoing hospital, which led me to visit a Senior radiation oncologist at a private hospital for a second opinion. Otherwise, I never believed in private hospitals as they are more of business hubs nowadays. The way she listened and hugged me while leaving, we sensed in our hearts that we have come to the right place. I respect and love her a lot. Later, we met so many loving people here in the form of staff, doctors and vivacious members of our support group. Frequency of radiation was lengthy due to daily visits, but I felt like I had been hand holded throughout the treatment. I was happy, smiling and so relaxed.

After my treatment got finished, the very next day, I took off my wig with 1 inch hair still growing on my scalp. To celebrate the day of ‘win over cancer’, we went out for a Christmas event with our adorable niece and nephew. We kind of lived our motherhood through them, they both mean the world to us and brings the smiles in our life. Our daily evening routine of playing ludo/ chess/ carrom/ cricket/ pakdam pakdai/ badminton etc. with them and their crazy gang of neighborhood kids, were the fun awaited routine of all these years. Next thing, I resumed office infrequently and also continued WFH most of the time. Thereafter, people who were unaware of my diagnosis usually gave a surprised look while asking about my well being. In reply, I used to share about winning cancer with a big smile, I guess that has helped melting myths around ‘Cancer’ in the society.

Today

My life learnings are “Life can be tough, difficult and totally unpredictable but NOT impossible”. Stop questioning “WHY ME?”-you will find no answer. Appreciate today for being alive and healthy. We all owe our life to our parents, so love them the most (no excuses allowed!). Take charge of your life, be courageous to take decisions and follow new routes even if it’s first of a kind (if you believe in it!). Believe in the Almighty and discover the purpose of your life before it’s too late.

For me, nothing gives me more satisfaction than supporting our ‘ALS care and Support’ family, all of their’s journey has inspired me in one way or the other. I strongly believe that every gem in this special family feels some sense of belonging here, as no-one in their relatives or friends can understand the challenges of this journey like this group. When people join, people go, sometimes, I get so engrossed in their challenges that it feel so void when that connection ends. However, in return, we receive uncountable blessings and kind words which are prized possessions for our life. Interestingly, we have started preparing a ‘journal of blessings’ , I read them every-time, when I need strength. Also, they act as a fuel for me to keep moving in life and making my presence meaningful on this earth.

Currently, I am standing at that point of my life, where I can easily cry, if I pick up all the missing things in my life. I’ll be lying if I say that I don’t get emotional when I see a mother engulfing her baby in her arms, when someone feeling composed in her partner’s shoulders, seeing a happy family, or may be that unknown security around you due to someone’s presence. But yes, this remains for a short time and I control to come back to myself. Actually, ‘no’ major regrets in life. Its just that “ Tujhse naaraaz nahin zindagi, Hairaan hu mein…”.

I am glad that I am feeling so strong while writing this journey here.

To all those who are currently undergoing cancer treatment, please understand that biggest fear in our mind is the term “Cancer”, not the disease itself. Believe in medical science -they have made good progress in finding the treatment of cancer. This is a long treatment, difficult one..but NOT impossible. Take this phase as ‘difficult turn’ in your life’s journey and there is smooth road ahead. In my personal experience after this unprecedented face-off with ALS and Cancer, currently I feel reborn in my 20s, exploring myself & world and learning to live life like “Love you Zindagi…..”

We both strongly believe that bond still exist between Mumma and us. I literally talk to Mumma whenever I need help and there is an ultimate force which turns things around and problem gets resolved. She is watching us everyday, every moment and providing with unknown opportunities, which otherwise seems unbelievable. During 2019–20, I have walked for a fashion show where my wish to wear wedding attire got fulfilled; driven exciting car rallies; watched beautiful plays and movies at theater; bought my new automatic sedan; participated in marathons; traveled many places and met lovely people; and last but not the least just got news of my first patent to be filed. So can I say that this is just the Beginning :-).

Wish you all a healthy and wonderful life.

Last edited with minor change on Oct 17th 2020.

I used this nice reading pane of medium platform for my first writing attempt. And usually this content has been shared with my close contacts and social circle, feedback of which received mostly personally to me are appended to blessings page.

‘Every moment of life is precious’, you never know that may be this very moment which is passing by….. “kal ho na ho”.
No situation is permanent in life, so in case you are passing through a rough patch, please just hang-in there and rest assured this phase will surely be passe sooner or later. And I’ll be glad to know if your life is going wonderful and still you notice some emotions travelling through your heart while reading this journey. Then I would request you to please come out of the ‘virtual world’ and go for ‘real connect’ by giving a call to any of your friend/relative/contact ‘who valued/supported you’ (not the one whom you value) in your tough times and let them know that you are available. May be this call can help find someone a companion to ease their journey!

I am not much of a social media active person. And also not sure, may be this is the only ONE write-up I may have, will try editing this time-to-time if some thoughts keep coming through. Thank you for your time reading it!)

Photo memoir of this journey.

Starting from left to right.
1.Diwali party with our crazy gang 2019.
2.Murthal paranthas-an hour after from here straight to radiation session. (me, extreme left)
3.Pratapgarh picnic- me(extreme left) with our support group.
4.KOD Jan 2019- with sis and cousin.
5.Fashion show Cancer Warriors(Yes to Life NGO, Feb 2019). Me (extreme right, front row)
6.Mar 2020- Deja Vu- While driving back to Delhi after current year’s car Rally, by chance crossed the same hotel (stayed with mumma in 2009 on same day) and turned our car and checked-in. Un-explainable experience.
7.Bombay again- 2019- Me, bestie and my sis.
8.Jan 2018- Childish behavior, No to treatment, will get cure with carrot juice.
9. Pinkathon 2019 with high-spirited cancer winners of our support group.
10.First outing with a wig.
11.Jul 2019- I found my boyfriend …at Singapore :-)
12.Oct 2018. My pillars of support.
13.TOI car rally, Feb 2019 -we designed our car with ALS and Cancer awareness theme.
14.Festival of Rakhdi- Aug 2017 . 15.The bald look — June 2018