Tag: Disabled

By Shruti Pushkarna

 

As promised, here is a personal account of my three months’ absence, when I couldn’t put pen to paper and furnish my otherwise extremely regular fortnightly column. If you are wondering what’s this got to do with the theme of disability, the answer is probably nothing. Except maybe it articulates a similar sense of helplessness and frustration, experienced by the disabled folk on varied levels 24×7. A first for me, it was truly novel and intense.

 

 

The start of a new financial year, April 2021 saw a sudden explosion of Covid cases in the country. Delhi and NCR were badly hit. As I took my marital vows (in a close family setting), Chief Minister Arvind Kejriwal announced a curfew with immediate effect. En route to my new abode, we were stopped and questioned by cops for disregarding the latest notification. Caught off-guard, we requested the trail of cars be allowed to pass the barricade.

 

Oblivious to the alarming crisis building outside, we chuckled and chatted, celebrating our conjugal beginnings. But in two days, things changed drastically. One after the other, the whole family tested positive for Covid-19. With each phone call, the tally went up, everyone reporting cases from their circle of family and friends.

 

Initial symptoms of fever and cough didn’t seem so bad. It was the messaging going around that instilled fear, forcing one to imagine the worst scenarios. ICU videos of patients struggling to breathe, accounts of people dying from the lack of oxygen on their way to the hospital, shortage of beds and oxygen, hoarding of drugs, news and social media was full of it. Not to miss the emphatic promotions of oxygen concentrators, oxymeters (not made in China), homeopathy medicines and what not. Everyone and their uncle was an expert on coronavirus!

 

Grappling with isolation and new relationship dynamics, best decisions weren’t easy to come by.  Starting with doctors.

 

What do you do when you first start to show symptoms? Who do you call? Most physicians you’ve known all your life have no experience with Covid, so whose opinion do you trust? And to top it all, various Covid treatment guidelines floating around add to the imbroglio.

 

For a week, we diligently followed the usual course of antibiotics, vitamins and breathing exercises. Things didn’t improve, in fact went downhill. The viral videos came to life, as my husband struggled to breathe and I made endless calls to arrange for a concentrator. We were lucky, the machine finally arrived, but as both of us tried to make the contraption work, things took a risky turn. We had to rush to a nearby hospital.

 

I helped my husband into an ambulance and loaded my car with the oxygen backup (since the hospital wasn’t equipped), clothes and some essentials. As I got behind the wheel, my own O2 levels dipped.

 

It seemed surreal, but it was all happening in real time and space.

 

Picture this. My husband on one bed, breathing with the oxygen tube jutting into his nostrils, his O2 numbers fluctuating, causing the machine to beep incessantly. I lay on the bed next to him, with a cannula in my wrist, injecting steroids and antibiotics into my body. Sometimes, I tried to look out the window, for a ray of hope. But all I saw was the backyard of another hospital where new patients and dead bodies lined up daily. The beeping from the machine and the siren from the ambulance became my staple aural diet.

 

Even so, there was no room to express any anxiety. In there, I had only one mission, to get us out of there. To make sure we got the right treatment. Thanks to my mother’s chronic illness, I have reasonable amount of experience with caretaking and dealing with doctors. I have learnt not to depend on nurses or hospital staff for adequate patient care. Services are shoddy, often due to low compensation and dearth of human resources. Given the dire circumstances and the volume of cases at the time, one could hardly blame the health workers.

 

I saw other Covid patients on the same floor, battling alone, as no family member wanted to enter the infected zone. I wondered how many of them got proper attention. Those who weren’t medically aware or aggressive enough simply relied on whatever the staff handed out to them.

 

It’s amazing how most citizens don’t question the treatment administered to them. Not just in Covid, doctors don’t like patients or their caretakers seeking clarification on the prescribed course of action. Bedside manners and hospital management don’t seem to feature in medical school curricula.

 

So why am I indulging you in this elaborate excruciating extravaganza?

 

With the scare of a third wave brewing, one can’t help worrying about what will happen if people act as recklessly as they did the last time around. I want to share some do’s and don’ts that can help.

 

Don’t read the news.

It never helps. Every case is different and there is no point in drawing parallels. Just focus on your body and its recovery. Also, the prime motive of coverage seems fear mongering to garner eyeballs.

 

Don’t engage in medical updates and futile conversations.

Limit your communication to what helps your case. Reiterations of your physical state will only exhaust you emotionally. Stick to speaking with those who ‘really’ care.

 

Trust your doctor.

As tempted as you might be to follow multiple medical advisories, don’t. Have faith in your doctor’s expertise and let her/him help you come out of it.

 

Stay positive.

The only thing that pulls you out of any tough situation is a healthy mind. No matter how bad your physical condition, remind yourself constantly, that you can overcome. Our mental state impacts our physiology, so use it to heal from within.

 

Focus on disease management.

Covid is all about proper management, starting from Day 1 at home. Ensure you are in touch with a good doctor from the start. Follow the advice diligently and keep an eye on changing symptoms. Take an informed call (without worrying) on when to get hospital care. Arrange for oxygen backup and have a network of friends and family lined up for remote help. If you plan and manage it well, the likelihood of recovery is higher.

 

Don’t lose patience.

This virus takes a toll on your body and mind, in unfathomable ways. The disease has after-effects that can trouble you for months (I’m still suffering). It’s a test of your tolerance. It helps to accept the situation and wait for it to recede, of course with necessary treatment and precautions. It’s easy to get frustrated because it turns your world upside down, but you need to exercise patience.

 

Save for a rainy day.

If you have money in your bank, half your stress gets taken care of. The disease starting from testing, treatment, after care and logistics, makes you bleed. Throwing money at the problem eases some troubles for sure. But be watchful of obvious traps and treachery. I wasn’t and I regret it.

 

I must confess that working with the disabled community has given me valuable insights into acceptance, threshold and grit. And firsthand trauma made me realise what it is to be up against odds every singly day of your life.

 

It’s been a lesson in compassion, forbearance and gratitude.

 

(Welcome back, Shruti – Ed)

 

 

Shruti Pushkarna heads operations of the New Delhi-based Score Foundation where she works as Director-Programmes & Communications. She is a former journalist (part of the founding team of MxMIndia) who has moved full-time to the social sector. Shruti writes for MxMIndia every other Thursday. Her views here are personal. You can tweet your comments and suggestions to @shrutipushkarna