“I HOPE you don’t mind me asking but how do you deal with living like this?” a friend asked me over coffee recently. He paused for a moment, trying to find the right words. “I mean being paralysed?”
We have known each other for a long time. In between, we had lost touch when he moved to another state to work. It was only lately we got connected again and found some time to hang out together.
I smiled and shrugged my shoulders. “I try not to think too much about it,” I replied.
I knew that answer didn’t satisfy his curiosity. There was a searching look in his eyes. He didn’t pursue it further, perhaps thinking it was a sensitive question. It wasn’t awkward to me. I would have gladly answered truthfully. However, that was all I could think of at that time.
When I had difficulty falling asleep one night, I pondered over my response to him. It was too simplistic an answer. It was easy for me to tell him that because I have had a lot of time to deal with my condition. Truth be told, I have fallen down and climbed up many times. That I can’t deny. I still falter every now and then. Living with severe physical limitations is never easy.
I have lived like this for over 30 years. I have seen other people in similar situations struggle in their life. We all have gone through one thing in common. We allowed thoughts of what we can’t do consume us. We revolved our life around the barriers that isolate and disable us.
In doing so, we forgot there is more to life than the impairments we have. We simply stopped living as we should. Our life came to a standstill as we grappled with the sudden and drastic change of not being able to look after ourselves and having to depend on other people to help us with our every need.
For many years, I hid in a self-imposed cocoon where I brooded and felt sorry for myself. Living with the consequences of spinal cord injury is fraught with great challenges. Other than paralysis, I have to deal with incontinence and a slew of other health issues which in turn contributed to low self-esteem.
The opportunities I have to forgo are too numerous to keep count. Likewise, the disappointments. I felt left out and dejected. Classmates and friends continued to further their education in universities, graduated, secured respectable jobs, got married and built a family. And I was stuck in a rut, unable to climb out of it.
While trying to make sense of my life as a disabled person, I eventually realised if I want to find fulfilment, I have to go out and live life in the real world. The world won’t slow down on my account. I must participate as a member of mainstream society and be involved in its activities.
Although physical impairment is a significant feature in my life, it isn’t the only matter I should be concerned with. There is more to life than allowing myself to be bogged down by it. I began to take an interest in issues that affects other aspects of society as well. Among the causes that are close to my heart are environmental conservation and indigenous rights.
I have learnt to stop dwelling on things I no longer have control of. I have learnt to stop comparing myself to others. I have stopped thinking of myself with regard to the things I can’t do. From living in a world of my own, I have turned my sights to seeing myself as a member of a larger community with the ability to contribute to its development and betterment.
Everyone has personal problems. They find ways and means to deal with it. I’m not the exception. I have accepted that I’ll always need help. If that is what is needed for me to continue living, that is what I’ll have to live with.
Everything became less complicated after that lightbulb moment. I have come to terms with my paralysis and moved on. There is really no use fretting over things I can’t change. I’d rather focus on things that I can. This was what I meant when I said I try not to think too much about it.
The Serenity Prayer written by American theologian Reinhold Niebuhr best sums this up.
God, grant me the serenity
To accept the things I cannot change;
Courage to change the things I can;
And wisdom to know the difference.
Should my friend and I get the opportunity to go out for a cuppa again, I would like to tell him this “real” life story. I want to share with him my struggles and how I came to the part where I try not to think too much about my condition. Even with paralysis, life has to go on. It was not a matter of dealing with it. Rather, it has become a part of me that I am hardly bothered by it anymore.