Photo by Ramiro Pianarosa on Unsplash

You must open the door, let it in, stay with it, fight with it, and chase it out. Wait for the next knock, and repeat the same process.

We have a modest living from a modest income from a modest market research agency we floated in 1996.

Until two years ago, we enjoyed our lives like vagabonds, when the first stroke of misfortune struck us. Just before this, my wife launched a food channel on YouTube, and I became a published author of my first novel (a sci-fi pre-historical fiction).  

The first knock (September 2022)

We had gone to collect an award, bestowed upon me for my novel, driving down for 5 hours from Jaipur to Delhi. As the function concluded, we rose to depart and she fell like a pack of cards. There were enough people to pull her up. She gained strength and we walked to a cafeteria about a hundred meters away. We had coffee and a bit of nicknack and rose to go to our hotel room.

She fell again and became unconscious. She was transported to a hospital where an MRI (Magnetic Resonance Imaging) was conducted on her and blood clots were identified in her brain. She was declared to have suffered a cerebral stroke.

The only visible sign of the stroke was that she had trouble moving both her left upper and lower limbs. Her speech was unaffected, perhaps unusual for a ‘stroke patient’.

She was discharged after seven days and we drove back to Jaipur (where we reside), for 5 hours without any further ‘knocks’ from Mr. Misfortune (or is it, Miss?).

(By the way, my wife is a chronic diabetic patient with a history as old as 20+ years, and she’s seldom taken care of it.)

Soon we started walking 4-5 kilometers (2-3 miles) as advised by the doctor at the diabetic reversal program that we joined. We continued this with great vigor for more than two months and forgot about the stroke.

Another knock, too soon (December 2022)

She suddenly held me tight on one of such walking sprees as if she was falling. ‘My left knee is giving away’. I held her tight and, in a few moments, she was back on her feet. We came back home and decided to consult a Neurologist.

We went to consult a Neurologist, did an MRI, and again a clot was located. It was (perhaps) the same clot that was located about a couple of months back in Delhi.

The Neurologist explained that owing to a sudden drop in Blood Pressure, there is a momentary lack of supply of oxygen to the particular part of the brain causing the knee to give away. Unable to grasp and digest what he said, we walked out of the hospital and came home.

In the coming days, as we recapitulate, she was losing her strength. She would get tired after every sundry activity. She needed to rest more frequently than before.

A banging on the door we couldn’t ignore (February-March 2023)

It was perhaps the worst ignorance, or rather a mistake, when we decided to go on a 15-day vacation to Kerala, a state in the southern part of India. With a tagline of ‘God’s own country’, Kerala is one of the most sought-after tourist destinations in India.

She completed the vacation in a wheelchair, unable to walk for even 10 meters. On our way home, we had to take a hopping flight from Kochi (Kerala) via Bengaluru (the tech hub) to Jaipur. I decided to stop over at Bengaluru to avoid exhaustion.

Fortunately, I have a childhood friend in Bengaluru. We invited them for dinner and as we were having dinner, my wife started having ‘seizures’. She would suddenly move her left hand and her head as if chasing something, rotating to the left, involuntarily.

I called up our neurologist and he suggested administering a twin dose intravenously (IV). We had to take her to a hospital for the IV and it was almost midnight. Thankfully, my friend was there as a ‘god-sent’, else it would have been extremely difficult for me to organize it.

The night was spent eventless and late evening the next day we landed in Jaipur. She somehow slept through the night and the next day she was admitted to the hospital. The same procedure was repeated, an MRI and scores of other tests, and the reports threw the same results.

The misfortune was still knocking at our door.

While treating her stroke, she was also diagnosed with ‘chronic kidney disease’ (CKD) as well, a fallout of unchecked diabetes.

Now it was a double whammy, i.e., a stroke with CKD.

Staying with the misfortunes (March 2023 till date)

It was tough for the first few months. Everything was sinking around me. I slowly regained my strength in exchange for losing tons of weight (as jokingly commented by my brother-in-law, when he first saw me after months).

With the arrival of 2024, after 9 months of her discharge from the hospital, I completely regained my strength and started to retrospect.

There were a few unanswered questions in my mind:

• If she had a stroke in Delhi, how could she walk 5 kilometers after she came back home?
• What happened when her left knee gave away as we were walking?
• As a result of her last episode (stroke), she only had partial paralysis of her left upper and lower limbs. Her speech was completely unaffected. Isn’t it a little unheard of for a stroke patient?

Having analyzed the sequence of events, I concluded that the episodes related to her ‘left knee giving away’ are (perhaps) the crux of the problem.

I decided to visit the same Neurologist we had visited when she had first complained of her ‘left knee giving away’.

He described the condition when her ‘left knee gave away’ as Hemodynamic Transient Ischemic Attacks or TIAs, which was due to the sudden drop in Blood Pressure. It is said that repeated TIAs lead to stroke.

We doubted that the hospital that treated her for stroke perhaps overdosed her.

On the horns of a dilemma

As a result of repeated ischemic attacks (TIAs), the neurologist told us to maintain a blood pressure of more than 150/90. On the other hand, the nephrologist, because of chronic kidney disease, wanted a blood pressure of not more than 120/80.

When I told the neurologist what the nephrologist wanted, he almost yelled and said, ‘To hell with the kidney. Save the brain first’. And we stuck with the advice of the neurologist.

Lessons learned

Though it took me almost 9 months to regain my strength, I was able to adopt the following:

• Stay calm and don’t be impulsive under any circumstances.
• Plan meticulously to monitor all parameters of the patient (I’m the only caregiver)
• Observe the patient about all her/his movements. Preferably make a note of it and read it every day to compare it to the previous days.
• When misfortune knocks, don’t panic, digest the information and plan your strategy accordingly.
• Do your research extensively, preferably in health journals, but just to gain knowledge and understand the situation better, rely only on specialists.
• If the progress is on the expected route, avoid seeking too many opinions. In my wife’s case, I observed my wife’s repeated episodes and confirmed it from the neurologist.
• Keep the inventories ready and replenish on time
• I’ve written the ‘schedule of medicines’ on a Whiteboard. She takes 23 tablets and 4-times insulin a day
• Keep praying, but don’t leave everything to the god

The knocking continues

As she was recovering from the stroke and chronic kidney disease, about a month ago she complained of blurring of vision. We called ‘Lenskart’ for home-based eye testing. After struggling for an hour, the guy left without a result. He told us ‘It is something else. Consult an eye specialist.

We went to an eye specialist and she was detected with ‘Tractional Retinal Detachment’ or TRD, (again) a fallout of diabetes. It’s called Diabetic Retinopathy. We are now preparing for her surgery.

Since the ordeal is far from over, I’d rather conclude here and come back with another article after the ordeal with the eyes is over.

The purpose of this piece is to prepare someone with similar ordeals to deal with it better. Hope I have been able to pen it effectively.