Learning to Live with a Disability

Learning to live with the unexpected onset of a disability or chronic illness is a challenge.

I lost all hearing in my left ear at the beginning of 2005. Combined with the thunderously loud tinnitus, I felt as though my head was submerged in deep water. I was forced to rely upon my right ear, my ‘bad ear.’

My left ear felt like a lump of dead flesh on the side of my head, a sensation exaggerated by the fact that I could no longer hear any sound when I rubbed my hand against the ear. One of the worst aspects of the disability was that I became extremely self conscious, always aware that something was out of kilter. I was disturbed by the fact that so many of my thoughts gravitated around me and my situation, instead of upon Jesus and those around me.

Being the master procrastinator that I am, I delayed making another appointment with the ear specialist and spent the new few months learning how to live with the disability.

Social gatherings became almost impossible, but my church friends made special allowances for me. I remember going to a home group meeting, and as the church was a Japanese language Christian church, the minister was speaking in Japanese. One of the other Australian guys, who spoke Japanese, came over to translate what the minister was saying for me. “Which is your good ear?” he asked kindly, and then stood at my right side.

Being unable to function as part of a team, I resigned as the church pianist, a step I had been loath to take as I been a church pianist for almost twenty years. I also stopped listening to music, since hearing music in one ear instead of in stereo was unbearable. I think this was one of the hardest things to get used to, as music has always been one of my greatest passions.

I kept trying to talk to people at church, but felt like a freak because I had to turn my head sideways so my right ear could hear them. Who wants to talk to someone’s ear?

There was one funny thing, though. One of my friends in the church was deaf in her right ear. Sometimes we would stand side by side and attempt to converse with the other, yet not be aware of it at first. We had a good laugh and swapped sides so that I stood with my right side towards her left.

One thing that helped me greatly was something I had learned while recovering from depression back in the early ‘90s. My counselor had taught me that to be in deep surrender to God really meant to never look back with regret upon the past, nor forward to any wish in the future - comparing ourselves to what we used to be, or what we wanted to be, was a hindrance for resting in God's will. Each day I was to pray: “I'm content to be who You made me to be, today. I'm content to be where You put me today, and I'm content to be how You made me to be today.”

These past few weeks I have been reading ‘One Liter of Tears, A Young Girl’s Fight for Life,’ the diary of Aya Kito, published by IBC, 2007/2005. From the age of fourteen years, Aya began exhibiting the symptoms of incurable degenerative disease, spinocerebellar degeneration. The disease acts as a prison, as the person retains full mental capacity although they progressively lose all physical control.

I was moved to see Aya’s mother give that same advice to her.

My mom and I talked about my future. According to my mom, "Unlike people who cannot see or are handicapped, the things you were able to do before never leaves your mind. You think hard about why you can't do it anymore, and you become emotional. So it always starts with the struggle in your mind. Even if others may view it merely as a machine-like radio exercise, it is actually a struggle in your mind, it’s training. Aya, I think that as long as you live every day to its fullest, you'll have a future. Aya, you cry alot, and when I see you cry, I feel so sorry. But looking at reality, you have to understand where you are right now and make your life full, or else you'll never live with your feet on the ground.”

And it is the same advice that Paul gave us, one of the theme verses of my life:

‘I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength.’ Philippians 4:12-13 (NIV)

p.s. - An operation in Sept 2005 restored about 70% mid-range hearing to my left ear, and reduced the tinnitus. At the moment, I can just get by, though I really need to get myself some hearing aids (long story...). My right ear, however, is slowly getting worse. Will it last until my sixties, or suddenly go deaf like my left did? I do not know, but I will not spend today worrying about what might or might not happen tomorrow. And should trouble strike in the future, Jesus will be there, reading and able to help me cope with it at that time.

p.p.s. - I believe that Jesus Christ is the same yesterday, today and forever, and that His healing power is still available today. And although I will never cease asking to be healed of my infirmities, I take care to ensure that my faith and hope is placed in Christ, and not in the possibility of being healed. For His grace is sufficient for me.