Shall We Continue to Die…? Of course not! Life is more precious than any other blessing, no doubts!

The title is unquestionably distressing, but fine to build a contrasting narrative with a stronger counter-argument.

This is a brief-epoch ‘biopic’. Yes, biopic, because I am writing what I am watching in flash-back! Truly sharing how incidents occurred and how we succeeded in managing the misfortunes.

This story spans a little over last 2 years; from February 2022 to date, to be more specific. During this interval, our lives once took a frustrating path, which was quite natural when our psychological brittleness peaked for a very short time. But, trust me, our optimism and willpower won the contest over anxiety, and we are still maintaining a big lead, far ahead of any such garbage rationale. I have no idea how things may turn out in times ahead, our hopes and determination are still illuminated.

This is my 2^nd blog and it is mostly about myself. My wife, Sadaf, again takes a lead role in this story, and why not? She makes the best part of ‘myself’.

Briefly introducing, my name is Khan Arshad, 55, professionally a Petroleum Geologist with a Master’s degree in Petroleum Geology from Karachi University (Pakistan), and another Master’s degree in Petroleum Geology from University of Aberdeen (UK). I worked almost 30 years with multinational oil and gas exploration and production companies in Pakistan. My last engagement was with a leading European multinational, as Exploration Projects Manager.

I’m not building my resume here, but just a part of the story I’m sharing in this post, for those who might be interested in reading real-life stories.

1. Introduction: The Beginning of Nightmare

1.1. About Us

I and Sadaf married in Karachi, on 24^th April 1997. It was an arranged fiesta, by all means. We were outright strangers before it was fixed. I still remember, I was working in Islamabad as Operations Geologist with a multinational oil and gas exploration company. When I told my department’s secretary about this ‘fixture’, the silliness of the situation was embarrassing when she asked her name which I didn’t know. Right there, from her PABX, I called my home in Karachi to avoid similar situation again, and I was replied, ‘Sadaf’.

Today, 27 years of togetherness, no kids, emotionally distorted; in general not a convincing equation. But hope keeps us moving on daily basis.

We love traveling, like anyone else on this planet does. We have been to many countries, and several times. We love visiting Pakistan’s northern areas, especially Gilgit Baltistan and Swat, at least once every year.

Driving is our passion, Sadaf doesn’t drive at all, but she is my side-kick, and I don’t drive without her. We drive all the way from Karachi to Islamabad and onwards into the mountains.

Although not advisable from safety point of view, I used to cover one side from Karachi-Islamabad conveniently in one-go, around 1,400 Km in 16 – 18 hours, stopping only for prayers and fuel (both for car and ourselves). Occupying the other seat, Sadaf maintains my BP at higher levels, thus keeping me awake all the time.

These days we are living in Islamabad (Isloo, with love), but our Karachi-Islamabad drive is a frequent voyage.

1.2. The Onset Of Vertigo

Vertigo crippled my life. It started all-of-a-sudden. One good morning of February 2022, I stepped out of my home, situated on the first floor of the house, as my daily routine for office. Just a few steps down, I felt like everything just spun around me. A little dizziness, a momentary imbalance and, before I could understand, I fell down the stairs. No major injuries but a blow in the back.

At first, I thought it was due to fatigue or maybe some stress of work. But, later, days turned into weeks and then into months, the episodes of vertigo grew more frequent and severe. Everything was spinning out of control, literally. Simple tasks became massive challenges. Walking, standing, even lying down; nothing could stop the relentless whirl of my surroundings. It gets worse with eyes closed, making impossible to maintain balance with closed eyes.

1.3. Seeking Answers

Initially I did not take it serious when I first fell off stairs. Just a sick leave, no doctor, no medicine, just a few hours’ rest and that’s it. Next day I was in the office, quite normal like any other day.

I had a stiff neck issue since years, it comes and goes; all I used to do was using a neck-collar and continue my routine tasks. No big deal! But this time it was different. I started feeling like a heavy weight put on my head, just a little bend and then the world would start whirling around me, at times a complete black-out.

Then started a new routine, i.e. visiting clinics, including all major hospitals in Karachi. I consulted with all big names in Karachi, including Neurologists, Neuro Surgeons, Orthopedic Surgeons, Physicians, Psychiatrists, ENT specialists, cardiologists, Homeopathy Experts, or Hakeem; Dozens of doctors without any exaggeration! But, no definitive answers.

If I remember correctly, nine MRIs in total, fewer X-rays, plenty of lab tests including spinal fluid (lumbar puncture) were carried out, but none of them were conclusive. Each report brought more questions. The only, somewhat, conclusive finding was an issue in my cervical spine which was an already established ‘known’ in my case.

2. The Ailment

2.1. Cervical Issues and Surgery Advice

MRIs clearly indicated compression in my neck, causing stiffness and severe pain. Few doctors opined that the vertigo is due to this compression, but most of the neurologists did not agree with that. Orthopedic surgeons advised neck surgery to remove a disk, after which my problems were likely be cured. In case of failure, the surgeons said it will not worsen the issue.

Following surgery advice, I again consulted with other doctors, family members, friends and my wife. Everyone plainly rejected this advice. One neurologist advised me to bear the pain even if I could hardly lift myself up from the bed, with the aid of a stick or with human support; if it goes beyond that, then I was allowed to consider surgical intervention in my neck!

2.2. Cerebellar Atrophy

In 5 months of my medical voyage to all hospitals and private clinics and labs in Karachi, my interest was more in finding what has happened to me. No medicine was working at all, no test coming up with any negative indication, and I was feeling deteriorated day-by-day and walking without aid had become next to impossible.

Each test and doctors’ visit was a glint of hope but ended with crushing disappointment. ‘Idiopathic’, ‘unknown’, ‘undiagnosed’, were the general remarks I was quite used to listen. Each visit ends with new doses of already prescribed medicines or sometime a new compound, but vertigo remained there with full ‘spark’.

One day, a friend in Islamabad suggested me to visit a doctor in Hyderabad (Sindh). I did not want to go to Hyderabad; the big names in Karachi were clueless, what will I get from Hyderabad? But Sadaf convinced me to visit that doctor and then I met Dr. Ali Hassan, a Neuro-Physician and a professor of Neurology in Hyderabad. He was the one who identified something strange in the rear part of my brain, Cerebellum, which constitutes only 10% of the brain but contains over 80% of the entire brain’s neurons! He noticed some change in my Brain’s MRI image, which was overlooked by other doctors in Karachi.

Dr. Ali Hassan asked me to have another MRI but with some special angle to see if his observation was correct. Then and there, MRI was done and Dr. Ali Hassan told me that his suspicion was right. I was diagnosed with ‘Cerebellar Atrophy’, some shrinkage in the rear part of brain. Brain shrink with age, a natural phenomenon, but this is an uncommon medical condition especially at my age. The actual blow was, ‘it is not curable and it generally worsens with time’!

Dr. Ali Hassan gave me his finding in writing so that other doctors, and my office’s health team should know how to see my problem and how to proceed further with treatment and/or therapies (the certificate is appended here with Doctor’s permission).

I was not comfortable with this diagnosis. My initial take was, ‘a possible misunderstanding by the doctor’. So, I revisited almost all doctors in Karachi, whom I had consulted earlier; and none of them clearly discarded this finding, neither clearly confirmed it. On my prescriptions, I could now see a question mark, ‘Cerebellar Atrophy?’

With further deterioration, the doctors considered some other possibilities of my disabling condition, including Ataxia, Multiple Sclerosis, Dystonia, etc. etc. More medical tests were prescribed, and results were not conclusive, again.

3. The Struggle to Maintain Normalcy

3.1. Returning to Work: An Attempt towards Normalization

My office was surprisingly understanding. They allowed me to stay home until complete recovery or to come in for shorter periods, if convenient. The idea was to spend time with colleagues to divert my mind from the stress which was building up constantly. The office environment and my colleagues provided a brief respite from the endless turmoil of my condition.

3.2. Further Deterioration

However, these good days were few and far between. More often than not, my attempts to resume work ended in mere disappointment. The vertigo intensified, leaving me debilitated and forcing me to retreat back to the safety of my dark room. Each failed attempt was a blow to my already fragile spirit.

The deterioration continued further, making it increasingly clear that my current condition was not sustainable. The behavior of this disorder was strange; usually when I got up in the morning I was almost always fine, but with just a little physical movement, I started feeling it. I always noticed that it only came to rest with me in the bed, but with my eyes open. Vertigo would strike even when I was asleep, feeling as though I was thrown into a deep trench.

3.3. Isolation in Dark Room

It had pushed me towards physical disability, I was confined to a dark room for 14 to 16 hours, almost daily. The darkness was my only refuge from the unrelenting spinning. Days and nights had no distinction, and life outside those four walls seemed slipping further away. The isolation was miserably suffocating. Going out without a helping hand was out of question; driving was impossible even to the shops on the next street, and walking without aide? No-way.

This condition persisted for few weeks. Throughout this toughest phase, Sadaf was my anchor. Despite the uncertainty and the continuous rise in the severity of my illness, she stood steadfast. She would sit by my side, holding my hand, telling me stories of hope and resilience; ‘We’ll get through this’, she would say with determination. Finally she managed to bring me out of that dark cage and then never allowed me to go back to darker shades again.

Looking at Sadaf’s agony, I realized that helplessness is far more destroying than illness.

My office’s response also started changing, a time to think about what to do, how to handle it, and how to get rid of the ‘burden’ in case it is not clinically resolved. There were some other developments which I avoid to discuss, but rightfully I can remain within safe limits. In fact, I started thinking about resigning due to my inability to continue or contribute effectively to the business. Discussed the same with HR, but HR’s support was in my favor to stay and continue with whatever office decides. This statement is purportedly unclear, it is meant to be so!

4. My Pillar of Strength: Sadaf

4.1. Her Untiring Efforts

Sadaf’s care was relentless. She used to spend her time in researching my symptoms, consulting with doctors and other individuals who had some info pertinent to my illness, and seeking alternative treatments. Her determination to find a solution was rock-solid. ‘We’ll find a way’, she would assure me, her eyes never lost their hopeful glare, although often wet.

Since there was no specific treatment to my condition, what worked best was faith and belief In Quranic verses and repeated amounts, and above all the prayers of our families and friends. My treatment was hidden in this faith, along with the walk therapy which helped me recover completely

Sadaf’s untiring care and motivation were my lifelines. She always encouraged me to try to come out of the dark room, even if just for a few minutes, ‘Let’s take a small step today’, she would suggest, helping me to sit up and eventually stand. With her support, I managed to walk a few steps each day, though always with her or another support to prevent me from falling. Each step was a victory, a testament to her firm belief in my recovery.

4.2. Emotional Support

Beyond the physical care, Sadaf provided the emotional support that kept me from sinking into despair. She listened patiently to my fears and frustrations, offering comfort and understanding. Her presence was a constant reminder that I was not alone in this battle. Her love and commitment were the bedrock on which I built my hopes. At times I whispered whether I would ever recover from vertigo or not, and she was always firmly positive, that ‘yes, you will’.

5. The Turning Point: Sadaf’s Cancer Diagnosis

5.1. The Shattering News

One important development before I go deeper, time and again we hired a few drivers but due to safety and security reasons, some issues and instances, we had no choice but to keep strangers away from our home. There were certain factors behind this decision which I cannot include here, but it turned out positively. You will find how!

Just as we were beginning to find a rhythm in our chaotic lives, the unthinkable happened. Sadaf discovered few lumps in her body. We went for her ultrasounds, mammograms and biopsy. On her birthday, 10^th February 2023, I received the reports confirming that she had breast cancer. Our lives, already crumbly, came crashing further down. The rock on which I had leaned was now facing her own life-threatening battle. Clueless, we were thinking about how to go further and how to take care of each other! The point where psychological meltdown peaked, the time where it came to mind, shall we continue to die? Have we already arrived at our miserable destiny?

5.2. The Timing Crunch

‘Shall we continue to die…?’ struck us even harder next week, following Sadaf’s diagnosis. On 17^th February 2023, We received a hard blow from my office. The HR officers came to my home and asked me to sign on my resignation. Despite already aware of Sadaf’s diagnosis and my prolonged illness, they chose to cut ties. The brutality of corporate culture was at its full show. A usual business norm; more than employee’s return, businesses focus on other returns.

From here onwards, I started figuring out how to find my own way to fill the crevasses. But, until we both fully recover, we have to reside in these crevasses.

I do understand the office’s position where they had supported me for one year while I was restricted to home, being unable to professionally contribute to business, but I think that was not the right time to lay-off someone who had given 15 years to the company.

I do understand that my thinking is a very self-centered argument, because business entities maintain a different strategic approach which is primarily focused on positive returns. They generously offered a partial insurance compensation, as per policy, but it felt like a hollow gesture in front of our mounting challenges. Anyways, I respect Company’s decision, despite my personal feelings, since I had no other choice. Regarding the partial insurance cover, there is another story where I could not stand at that time due to Sadaf’s depriving condition, and the financial slack I was foreseeing during the course of treatment.

6. Struggle with New Reality

6.1. Coping with Sadaf’s Diagnosis

The days following Sadaf’s diagnosis were most of the worst of our lives. She, who had been my pillar of strength, now needed support more than ever. Despite her own fears and uncertainties, Sadaf continued to take care of me, her spirit undeterred. Her courage in the face of such a devastating diagnosis was nothing short of miraculous. And the equation was in itself interesting: She was thinking that I must recover as soon as possible, and I was thinking only about rescuing her from this dilemma.

But, I had to behave like a responsible person, taking full control of upcoming events, i.e. our routine parade to hospitals for the course of her treatment, along with the care she deserved during clinical recovery and psychological aftermaths of the treatment procedures, including chemotherapy, mastectomy and radiation.

 I think, in fact I am quite sure that, with the support of many others, I helped her pull out of that suffocation and her staunch belief paved the way for my recovery. We augmented each other, and that equation turned out in a win-win formula for us. Is there any other show more powerful than our fights with cancer and neuro-disorder? Simply, No!

7. Finding Light in the Darkness

7.1. The Power Play Of Strength

The hardships, we had been through, revealed the strength within us. Sadaf’s courage was inspirational which motivated me to go extra miles ahead. It was not the life we had envisioned, it was nothing less than a nightmare.

Beyond my imagination, Sadaf’s treatment involved almost daily trips to hospitals, private consultants, and labs. We had to look after each other and to recover for each other, otherwise there was no one else to look after us constantly. We had no choice but to save ourselves from being dependent to someone else, no wonder how close in relation that person would be.

I used to hire a cab for any outdoor requirement, but at the same time I started driving slowly, gradually, shorter distances and then longer distances, but never alone. At times I had to stop until I overcome the whirl in my head. For a distance of few kilometers, this could happen more than once, but I managed it. It helped a lot in regaining confidence and then driving few kilometers became easily manageable.

With more confidence, longer distances were my next goal. Once we set on a longer drive and managed that in more than four times of my usual practice under normal condition. That was again an achievement that I could do longer drives! Seeing things going away from our hands also allowed us to let the worries go too, we refused to keep them controlling us. Scary, risky, dangerous, so what? When it is understood that you have nothing to lose much, you have a lot to get. This philosophy was adopted and then we were good to go and we did it.

The overall result was amazing. Along with these risky efforts, faith never left us behind. We both, and our other family members and friends kept visiting us and we all used to recite Quran; I and Sadaf never missed our daily amounts which were provided to us the real spirit and confidence to recover, of course medical treatment was never compromised.

We moved to Islamabad in July 2023. Most interesting event was our road trip! Yes, we decided to travel by road, in our own car, and I was the driver. Although it took much longer than usual, it was really scary, but we made it. Alhamdulillah.

7.2. The Road to Recovery

As the months passed, we began to see positive results for both of us, empowering us to hope for the best in the days to come. After diagnosis, it took three months to complete all tests required to initiate Sadaf’s treatment, but most importantly in making herself comfortable to begin with chemotherapy and following surgeries. Details of her treatment are detailed in my first blog. Her strength and resilience paid-off quite well. My vertigo and neuro-disorder gradually became manageable with continued treatment, and therapies. We were slowly finding our way out of the darkness.

Each passing day registered a milestone crossed in our favor. We learned to cherish each moment, to find joy in the ‘here and now’. Tomorrow is never guaranteed, for anyone anywhere, and each day is just a gift of God that we are still alive and together. Our love for each other just grew stronger through the trials we faced.  

Moving to Islamabad was an effort to find improvement with a significant change in weather and environment. Although the move was not appreciated by our families and friends, and by Sadaf too, in fact seriously opposed by almost every other person within our circle, it was solemnly my personal manifesto, I even disregarded Sadaf’s insistence on staying in Karachi.

Being very selfish in my decision, I was determined to make this move as an attempt to bring a positive change in our health and personal behavior. Today, when I am writing this story, I can firmly endorse that it worked too good for both of us. Sadaf still  holds contrasting opinion and that is another truth.

7.3. Walk Therapy

A further worsening effect on my health, being stagnant at home and doing nothing, was weight gain paired with fatigue. In order to regain strength, I started going to a park regularly, along with Sadaf and my walking aide, the stick.

Every day I tried to increase my walking distance and pace. Sadaf initially enjoyed sitting in the park, watching me walking, but later she opted to stay at home letting me go unaccompanied. Going out for long walks, unaccompanied, was an achievement in itself. My pace, though slower than usual, improved from 2 km/hr to 4 km/hr within a month. Remarkably, in October 2023, I averaged nearly around 17 kilometers per day, with an average 4 hours’ walk, but in 3 to 4 intervals during the day from early morning to post dinner.

The objective for this strenuous exercise was to get rid of any kind of disability and regain normalcy by the time Sadaf recovers fully after her cancer treatments. With minimal dietary changes, this walking routine resulted in losing 8 to 10 kilograms. Well, my weight loss wasn’t unprecedented, I have shed off 18 kilograms in just 5 weeks, but four years ago during Corona pandemic (from 92 Kg to 74Kg; will share that achievement separately in my upcoming posts).

Besides weight loss, my walk routine raise my confidence in recovering physically, regaining balance, and ultimately walking independently without the stick.

8. Lessons Learned

This journey taught us the most invaluable lessons. We learnt the importance of self- activism, the value of caring people around us, and the profound impact of collective goodwill. Most importantly, we learnt appreciating the power of the human spirit to bounce back, to resurface from deep trenches. No matter how dusky were the days, there was always a spark within us, except the initial frustrating days when we were psychologically brittle, and clueless about how to reconstitute ourselves and regain normal routines.

9. The Future Reimagined

Today when I am writing this story, I have fully recovered from any kind of disability. I can drive from Karachi to Islamabad and in the mountains, without any restriction of day or night. Cervical issues are still there but they have been my companions since more or less three decades. Sadaf is also free of cancer, to the best of doctors’ knowledge and experience, but physically and psychologically deeply fractured. It will take much longer to come out of it, but one day she will.

Our future is uncertain but is filled with hope, although without job. I am facing difficulty in finding the kind of job I used to have before my ailment. Till I find a job, I will write as much as I can. In the quest of work, I developed own website, www.enerbrill.com, without any prior knowledge of this art, and wrote my first blog about Sadaf who is truly an inspiration for many women facing a similar adversity.

If I don’t find a job, I may try website development as my new cup-of-tea and learning other digital services. No regrets, no complaints! Being an explorationist, I will try to explore new venues, discover the roads less travelled and enter the arena with a bang.

We dream of a day when cancer and other health disorders become distant memories, and when our struggles are replaced with stories of triumph. We have learnt to take nothing for granted, to hold onto each other tightly, and to face whatever comes next with firm and positive attitude.

Our first and foremost achievement was marked in the very beginning of the tripled crises, we had opted the answer to that big initial frustration, ‘shall we continue to die? and our only choice was to live at the fullest.

10. Conclusion: Shall We Continue To Die?

Life, as we have experienced so far, is a journey filled with unexpected twists and turns. Although our road was marked with lines of challenges where parking was forbidden, it was also illuminated by moments of profound beauty and grace. So, ‘shall we continue to die?’ was the frustration thrown away, as nipping the evil in the bud. There is no other option but to live at the fullest.

Today, as we continue moving forward, we will appreciate the human sparks with boundless capacity for love and compassion. This is our story, the story of struggle and survival.

The story of keeping the ‘hope belt’ fastened.

Cheers and thanks for reading

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