Thursday, May 31, 2012



One thing starts and then another follows
One thing began bringing its sorrows.
Over years the body, mind and soul
Think that they understand the whole,
But just when all seems quietly still
In comes another that makes you ill.

Up and down, you ride up and down.
You cry like a mourner, laugh like a clown.
Deep in your heart pain lurks unseen.
Hang on to the rollercoaster, it's nasty mean.
How do you manage, I never really do.
I just hope to survive, to myself be true.

What was I before all this befell me?
Was it so long ago I walked disease free?
I try hard to recall, I believe I have forgotten
And that's okay, for that me will never return.
In my mind's eye, in the quiet voice of my heart
I seek to understand that I stand apart.

I am not one with the girl of my past
Clueless to what the future brings at last.
I do know that today lies in my hand clasped
Clued in by painful lessons I have grasped.

Pain and loss, hurt and grief,
Sneak in to steal like a thief.
Let not my heart cave in to despair,
I remind myself that death lies there.

Keep hope alive in my soul,
It matters not my body's unwhole.
For beyond the grasp of life's uncertainties
Lies one thing sure yet full of mysteries.

I know not why I suffer in life,
I know not why there is strife.
Yet one thing sure I can and must proclaim,
God loves me still, He knows my name.

And if I know not why now, why me
It's really alright if it's a mystery.
I hang on to the hope I have not in vain,
Some day I'll be completely whole again.

Is that at death when I meet my Creator,
When I see His face, feel His embrace,
And all doubts, questions, fears and tears
Will fall away in the love of His gaze?

I pray 'tis so, I cling to my hope
It helps me survive, helps me cope.
For if mine eyes were set only here on this earth,
I should perish bitterly not knowing my worth.

I am not defined by grief, hurt and pain
I will not forget my true self again
I shall to myself be always kind,
Till it lies enshrined in both heart and mind.

I am more than the sum of my bodily parts,
I am a soul traveling in an imperfect vessel.
Some day when my journey's done I shall be set free.
The real essential, beautiful me.

Pavitar Kaur Gill
31st May 2012

Wednesday, May 30, 2012

What if you woke up one morning...

What if you woke up one morning with a ringing and buzzing in your right ear and in 24 hours or so you discovered that somehow your auditory nerve in your ear was inflamed, half of your hearing is gone in that ear, and you have to start a therapy of 3 powerful drugs to save your nerve and hopefully restore hearing?

It just happened to me. Two days ago.

I kid you not. I sat in the audio test lab reception area in a daze after an audio test yesterday and its results were explained to me. My left ear hears perfectly, but my right ear has lost 50-55 percent of its ability to hear. Just like that. Overnight. My ENT doctor sent me to the audio test after a scope showed no physical defects. After the test he said it had to be an inflamed nerve and started me immediately on 40 mgs of steroids to reduce inflammation, an antibiotic, Klacid, in case of some bacterial element at play, and an antiviral, Acyclovir, as the herpes zoster virus that causes chicken pox and shingles can affect nerves. So I am drugged up and hopefully it isn't too late to save my hearing.

I can still hear out of my left ear quite well. Strangely all noise seems exaggerated, I think because my ears and my brain haven't compensated for the loss yet. I don't mind too much at present. It just means my body hasn't gotten used to hearing loss, and I don't want it to get too cozy with the idea. Fight it!

Fight it? How can I fight anything? I have been on Humira for Crohn's Disease and it has helped but at the same time it has had to lower my immunity in the process. I am fair game to opportunistic infections. A virus that in a healthy person might just be a mild cold could do more serious harm to me. Apparently this might have just happened.

Shortly after I began Humira last year I had shingles on the side of my upper trunk. No nerve damage, not too much pain but a very tender patch of typical shingles pustules. Could this ear problem be a recurrence of some herpes zoster attack? Why on my ear nerve? Who knows? There are no answers to the why's and wherefore's. Just a desperate need to cope with whatever is on my plate yet again.

What is on my plate? I don't know for sure yet and that makes coping rather tricky. I just have to live one day at a time. I am doing my utmost to get better. The ENT doctor said the bad news was what has happened to my auditory nerve but the good news is that I went very early to see him and this will help greatly. I hope so. I really, really hope so.

I remember thinking that at least I could still see. My optic nerves are pretty okay. Some days my vision is blurry but I cope. Often I am very sensitive to bright light. I avoid going out in the sun. My vision is good most days and I am grateful. Sitting alone after the audio test I felt tears fill my eyes. But the thought came to me that I could still see. Yes, I can and talk, and smell, and feel, and walk, and think and put thoughts into action. I can do so much! There is hope!

I don't believe in coincidences. As I sat there in the audio lab reception area, waiting for my test, I was seated with a family. One son was deaf and had speaking difficulties. He was playing a game on an iPad with his younger brother, and kept clapping loudly when his brother did well. I found the clapping too loud, and annoying. But I said and did nothing beyond an occasional look. His mother was with him, and as a Mum myself I know how horrible it is to have others harshly judge our kids. And he had serious medical issues. Far more serious than mine. He was born with congenital defects and had never heard a single sound, or he had some level of severely impaired hearing. The audio test lab was a place he came to often, I could tell. I tried to feel sympathetic but not obviously so... it was on the inside that I had to tell myself to stay calm in the face of a few claps of obvious joy. He was coping, the best way he could. I gave him that space. I hope he can hear with all the technological aid available to us, and that he grows up to live a happy and fruitful life.

The ENT doctor that requested my audio test had written down on the request form that I was to be tested as a candidate for a cochlear implant. I didn't know what that meant, thinking simplistically that as an ENT surgeon he might have been a little trigger happy to get me on the road to surgery. The cynic in me was quietened when the technicians discussed it and one of them said it just meant an audio test for hearing ability and impairment. Oh, okay. Afterwards I read up about cochlear implants otherwise known as a "bionic ear". I remembered Jaime Summers, the Bionic Woman from my childhood tv viewing. She had a bionic ear. haha! If my hearing doesn't come back on it's own I have options. It's not the end of the world. I must remain positive and hopeful. I have so much to be grateful for, and indeed, I am very thankful. That leads to contentment, and that brings peace. I need peace, deep in my soul otherwise I cannot live with myself and I can't imagine anyone else wanting to live with me. By choice, that it is! My dear husband and family don't have too much choice in the matter. Not really. I am, thankfully, and very contentedly married to a sweet man who takes his marriage vows very seriously, and deep down inside me I know my kids are happy, so they're here for the long haul. I, too, must be present for the long haul. And in a state worthy of them. I try. I try very hard indeed.

But yes, what if one morning you woke up and something failed to work in your body? Some part of you sustained an inexplicable impairment. Somehow in the middle of the night, or possibly in the preceding day, some sinister agent got into your system and played havoc resulting in your not functioning fully and normally? What would you feel, how would you react, what would you do, how would you cope? One never knows till one walks that path. I just did. It's hard work. I hope it'll be a long, long time before this happens to me again. Hopefully it never will.

At first I was annoyed by the noise, then worried because it persisted all day, troubled next that I would never sleep peacefully again, anxious to get it sorted out soonest, shocked to hear the news (with my good ear, no less!) and then deeply saddened to know what was happening.

Have I moved beyond "deeply saddened"? No, I haven't. It's a bit too soon perhaps. I find myself tearful from time to time. I feel overwhelmed by the effects of the triple therapy on my body, especially the watery diarrhoeas caused by the antibiotics, and I always feel depressed when I have to take antibiotics . I think every good thing is drained from me. It exhausts me. It takes the joy out of me. I spend all day in my room running to the toilet when I have to, feeling sore, and tired, and so totally and utterly fed up. Despair fills me, tears well up, I cry, I feel better. This is a cycle that has occurred all day today. But I tell myself I have a week's medications and then I retest my hearing next Thursday. By then if there is to be healing it would have taken place. I will know. I will find my feet, I will take it all in my stride. I must.

I am reminded never to take things for granted again. Each part of my body, each function, each special role is a gift to be enjoyed, to be cherished, to be looked after to the best of my ability. I don't know what I could have done differently to preserve my auditory nerve. I am not fond of loud music, if anything I have heightened sensitivity to noise. But this came out of nowhere. And so while I didn't have a chance to better manage my nerves or protect my hearing or fend off viruses or whatever little I could have done... I have to say I miss my hearing in my right ear. I can barely hear anything in the normal range with it. I miss it. Very much.

Yes, it's not my fault. Maybe I can blame Humira, I really don't know. It isn't important in the big picture. Who, what, where, how, why... no answers are forthcoming. Only time will tell if my hearing will be restored. Come what may I will cope, life will go on, I will be here, as always. As I have said elsewhere in my blog, I am not the sum total of my bodily parts, I am so much more. Take away my senses, my body if you must... I am a soul, trapped in an imperfect vessel. Someday I will be free. But not for a long while yet.

Thanks for journeying with me, and for reading.


Monday, May 7, 2012

Painfully Human

Pain. Bone pain. Joints hurt too. Muscles ache in tandem. Pain is my constant companion. 

Fragile. Raw nerves. I feel intensely. Everything affects me deeply. I am human after all. 

Upset. Easily rattled. Walking is difficult. Pain crippling yet manageable. Often it comes, goes, returns. 

Peace. Desperately needed. The soul's balm. A gift from God. Indeed, I am painfully human. 

Thanks for reading,