What caring for my paraplegic sister taught me

Published July 30, 2016
I hadn't met my true self until my older sister's accident that left her paralysed from the waist down. — Creative Commons
I hadn't met my true self until my older sister's accident that left her paralysed from the waist down. — Creative Commons

If there is one thing life has taught me, it is that a person is utterly unaware of their true potential until they encounter and cope with a challenging situation.

I hadn't met my true self until my older sister's accident. I was barely 15 years old at the time — a period of carefree youth.

My sister was a sensible, good-humoured girl, but my relationship with her was marred by a few episodes of childhood bullying. Being five years older than me, she would use her seniority to justify her behaviour, and so, our interactions became imbued with formality and seclusion.

All that changed after her car accident. She was driving when her car fell off a bridge and was hit by a passing vehicle. The damage was permanent. She became paralysed from the waist down.

That was 12 years ago.

I soon became my sister’s primary caregiver, dedicating myself to her round the clock.

At first, my family hired nurses to help out. But with their demands for exorbitant pay and our concern for privacy, we decided to dismiss them.

My brother played a huge role in attending to our sister’s mobility needs, but he was a boy. He could not attend to her personal needs the same way.

My parents were broken by the situation, but braved themselves and managed to stayed hopeful. By taking the major chunk of my sister’s responsibilities, I chose to relieve them from some of the stress. I decided I could manage everything single-handedly.

Also read: David lost his legs but he stands tall

For my sister, walking was now a lifelong struggle. I was responsible for everything from keeping her clean, to overseeing her physiotherapy sessions, to eventually becoming her emotional backbone.

It was hard — crippling anxiety overcame me every single night and prompted me to get up and check on my sister in her room. I had to make sure she was lying on the right side of the bed; I had to adjust her posture to ensure she didn't develop pressure sores.

The days she took her frustrations out on me were the most challenging. Dealing with both her battles and mine was tedious. On such occasions, suppressing my desires and ambitions for her sake felt like a small personal victory. But some days I would also lose my patience with her, and rebuked myself for selfishness.

Despite constant anxiety and sleepless nights, I managed to make it to class every morning. It was a different matter that my performance in school was suffering. So much of my time was taken up by caring for my sister, leaving me with little time to focus on my studies.

My social life also took a backseat. While my friends met up, going shopping one day and dining at restaurants on another, my days were filled with visits to hospitals, check-ups and follow-ups and rehabilitation plans.

Tired of my constant refusal to join them — and not understanding why I said no — my friends eventually stopped inviting me. I felt upset and ostracised.

The only person who would listen to my grievances was my uncle, who had been close to me since childhood. Whenever I was having a bad day, he encouraged me to be patient and steadfast, and reminded me to trust God.

When my results came out, I had managed to pass with decent grades. This wasn’t celebrated at either home or school, but with everything I was going through, I considered it a big achievement.

Despite feeling despondent in the absence of a social circle, I realised I needed to feel motivated so that I could motivate my sister. I had to balance my time between taking care of her, and following my own dreams.

I enrolled in a law school with evening classes since my sister needed me the most in the mornings. I was elated; I had secured admission in a reputed institution, and I might just become a lawyer. My sister even adjusted her timetable — bathing and sleeping schedule — to suit mine.

When it came to social hangouts, I began to strategise better. I adopted a Cinderella schedule and only went out when I was certain my sister did not need me.

See: How I fought a stammer that was killing my confidence

All of this seemed to work initially, but I couldn’t keep up. I found it difficult to be cheerful around friends while deep inside, my motherly pangs of anxiety were alive and kicking.

I would be out somewhere, but my head would race with questions:

Will she manage in my absence? Will my hypertensive mum be able to help her out if required? Did she fall while shifting onto the wheel chair? Is her wheelchair stuck somewhere?

I eventually completed law school, but had to forego my dream of pursuing a career in law. When I saw my friends following their dream careers, I couldn't help but wallow in slight self-pity. It was, however, fleeting. I pushed myself to take care of my sister, pursued dreams that were feasible and eschewed the rest.

I shifted to temporary jobs in freelancing, teaching and social work. These left me with ample time to cater to my sister’s needs which, over the years, had remained more or less the same. The difference was that with time, she could manage herself to some extent as her muscles were getting better.

Seeing increased stability in my sister’s life is the best reward I could have asked for. After years of care and rehabilitation, she is now able to manage many of her activities with minimal assistance. She can stand and — with the help of mobilising gadgets — even walk a little.

But what makes me most proud is her job. Despite living in a society that is unfriendly to disabled people, she now working in the human resources department of a reputable institution.

As for me, I have become more resilient, more patient, and more positive than ever. Taking care of my sister was the most real test of character.

This difficult time also helped mend my relationship with her. Today, brought together through tragedy, we are inseparable. Reminiscing, we can laugh and joke when we look back at that dark time in our lives, a sign that we are moving on.

Life, as we've learnt, isn't linear, and more often than not we are confronted with testing situations we never anticipated.

But challenges are an ingrained part of our growth and awakening, and the best way to deal with them is to take them head on. For this, it is imperative to believe in yourself and be patient, and I could not have done either without my sister.

For my sister and I, the single, most important takeaway from all of this has been that our struggles don’t define us; what defines us is how we choose to tell our story.



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