Saturday, January 11, 2014

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.

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  1. I have been a lurker here off and on, but enjoyed a few lines in this post enough to say hello, you will cope, and a new life awaits.

    I say this in hope as much as faith, for I have the same loss as you....hearing is gone.

    Then you wrote:
    "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."

    I have had meaningful Christians stab two index fingers in my ears, babble in tongues, and pull their fingers out so furiously with a "pop", it would hurt. I read their lips as they yelled "Be Healed!"

    But there was no healing, just worsening into a silence. They would often shrug their shoulders and move on, as if they had followed a "rule book" by God to heal, did their part, and now, it was no longer their problem.

    Look back at regret?
    Not really, as I have heard so many wonderful words from all walks of life over the years, that I have plenty to savor. But I DO regret not learning ASL when it would have been infinitely easier than now.

    Few churches sign language what is going on, and pastors do not know what a podium is designed to do.... draw focus to them. They perform exercise programs running from one end of the church to connect to the far side, while turning their back on 90% of the rest. I can't read those lips at all.
    Then, they race back to reconnect to those they have lost as they preached way over yonder.

    An ASL person helps me catch the "instant replay" as pastors do exercise from the pulpit everywhere. I find my vocabulary in ASL to be too many churchy words and not enough regular words.

    But I walked the Mall this week, and leaned over a rail watching.
    Santa Claus was listening to a young girl with wishes too wonderful for me to know. She was in rapture with him.

    I knew that look well as I used to be Santa at the request of a friend. My ears were in decline from long ago, but the little girl on my lap wanted a family....her folks were getting a divorce.
    Christmas was less politically correct in those days, and I told her that all of Christmas is a celebration of a family being made.
    Every manger shows the baby Jesus, with his mom, Mary and his step-dad, Joe.
    And every Christmas, we celebrate a family being made by God. I told her that God was making a family for her, but she said she wanted her own family.
    I added that she WILL have her own family, but probably in two houses, so she must celebrate family time TWICE every year.
    She pondered that a long time, and then went silent.

    Soon, a question of follow-up ensued, but try as I might, I could not hear her tender request and soft voice.

    Deaf, hard of hearing, and late deaf (heard before and now don't) ALL have a tendency to babble on and on. The more I talk, the less you can talk. The less you talk, the better it is for me to not misunderstand and embarrass myself answering a topic, not in conversation.

    (That is why I hate restaurants; who is talking?).

    When someone babbles on and on, it is a sign they have hearing problems.

    Answering as Santa is an enormous challenge, for every child has different beliefs, age, desires, and hurt in their heart that needs tended with discernment.
    I never answered the little girl's follow-up, for I could not hear it at all. I knew I could no longer be Santa again, and watching one this week at the Mall made a smart on my heart. I left the Mall; I no longer wanted to be there.

    But your line above makes sense, and from time to time, I will add some of the best lines I have been given to cope with this malady.

    Ps. My word verification here is "rests". What a sense of humor in our God. :)

  2. Hi Keystone,
    Thanks for saying hello, and for sharing your experiences with me.

    And wow, I sure relate to what you've written, right down to your restaurant comment. I have a running joke with my family that I may have to learn ASL one day.

    I like your perspective as well, like your comments about pastors performing exercise programs rather than staying behind the pulpit - finding humour in situations is such a lifeline sometimes.

    Your story about being Santa is so moving, about broken families, and being unable to hear that last request. When I go walking with my five year old son, he tries to talk to me, but unless I pick him up and sit him on my hip, I rarely hear what he is saying. Fortunately, he is still growing, so in a few years I will be able to hear him when we walk together.

    And yep, God's sense of humour is priceless. What a thought, that in the midst of external storms and physical hardships, we can rest in His will - no struggling, no striving.

    God bless.

  3. Peter thank you for sharing. 'One Liter of Tears, A Young Girl’s Fight for Life' sounds like a very good book. Blessings.

  4. and I'm going to commit to praying for you Peter. You are a blessing.. and like me a fighter in your own way. Sarah

  5. Thanks for visiting the blog, LadyFi.

    Hey JBR, 'One Liter of Tears' is an awesome book, watching Aya contend with her disease so courageously is so motivating, yet heart breaking as well, knowing that it was incurable. Seeing her read the Bible and talking to Jesus and God in her diary was wonderful.

    Hey Sarah,
    Thanks so much! I can't say how much I appreciate your prayers as well. God bless :)

  6. Thanks so much for sharing this, Peter. I didn't know about your disability. And I can't imagine a life without music. Wow.

    Your journey through the valley will help so many others who struggle with disabilities, both physical and emotional. It's commendable that you've chosen contentment, and even more commendable that you allow God to work through you and in you because of your trials.

    Blessings to you,

    P.S. You will notice I removed all the buttons (including yours) from my sidebar. I decided to put everyone in my blogroll instead. :)

  7. Thank you for sharing your story and faith. I wish you the best. Thank you for dropping by my blog with your words of encouragement.

  8. Dear Peter,
    I think one of the causes that lead me to depression was to think that I lost everything that was valuable for me (ministry, friends and church) I started thinking that my life was better yesterday than today and also to think that my life would never be as good as it was and it was so hard to leave the place where those thoughts kept me captive. But now that I am recovering from depression, I am learning to be happy with who I am today and with what I have today, it is not easy still because there are days when I see my past better than my present but in the other hand I can see that step by step God is teaching me to be happy in every situation, He is in present and He is in my future. Blessings and thanks again.

  9. encouraging but one of the ways the relationship works with God is through the body of other believers - how can people with these sort of hearing problems be fed this way if unable to be in social situations - and, god judges us too according to our relationship with the body as well as one on one with him - answer?

    1. Dear Anonymous,
      The first thing I would like to encourage you with, is that God understands our circumstances completely. Hebrews 4:15-16 For we do not have a high priest who is unable to sympathize with our weaknesses, but we have one who has been tempted in every way, just as we are--yet was without sin. Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.

      Also, there are many churches and Christian groups who cater to the hearing-impaired. Are you able to attend a church that has a program for the deaf, or find smaller Christian groups who do?

      Please do not fear that God will judge you unfairly due to your hearing problem, He is compassionate, and full of mercy and kindness, and understands what you are going through.

      God bless

  10. Having been been with an eye condition that has caused me a great deal of emotional pain over the years, I can sympathize. I am so thankful that it isn't worse, but it has still be hard for me.