The Support of Similar Suffering

Last Saturday, 22nd May, the Inflammatory Bowel Disease (IBD) Support Group met at a hospital here and I managed to attend despite a rather busy weekend. I am so glad that I made it, because once again, I am reminded of the support that one can obtain from people who suffer in a similar manner.

Patients with Crohn's Disease and Ulcerative Colitis meet once every few months, usually in a hospital setting, organised by one of the Nurse Clinicians who is dedicated to assisting patients gain support from one another. At this last meeting we had a dietician talk about diet during flare ups, and during remission, and making sure patients obtain sufficient nutrition despite their intestinal and digestive problems. A psychiatrist spoke about coping with IBD, and touched on the role of the psychiatrist in helping IBD patients.

While the talks are always useful and informative, and the Q and A sessions lively, the best part of the meeting for me is always the opportunity to meet other patients in the same boat. I saw familiar faces from previous meetings, including one lady who's had 11 surgeries, and I made new friends, including folks who have just moved to Singapore, a young lady who hasn't been definitely diagnosed as yet, and a young man doing his reservist stint in the army.

So varied is the insidious reach of IBD that people from all walks of life can be affected by it. At each meeting I encounter new patients, and I sometimes wonder how they personally cope with this illness that wrecks a life and causes so much pain and makes the simple task of eating a meal a dreadful nightmare on many occasions for so many.

This same question fuels my part time PhD. How do patients in Singapore live with IBD? How does it affect them? How do they cope with it? And how can we help them? Through in-depth interviews with patients I hope to answer some of these questions, discover more questions, and perhaps provide some answers and insight to anyone who is interested.

My PhD keeps threatening to be derailed...last year was so difficult for me with my father's illness and subsequent passing, and then towards the end of the year I became quite ill, culminating in surgery earlier this year. I have thought of giving up a few times... but each time I meet new patients with IBD I feel encouraged to go on because I admire their courage in the face of great difficulty.

I know firsthand the difficulties they face, some of which are severe, and others more moderate or even mild...but all of them must face challenges, must make adjustments, must grieve the loss of their health, must accept the incurable, must live with often debilitating side effects from medications, must learn to love themselves and continue living life to the fullest...while they still can.

After the Support Group meeting I went to a wake. A very close friend's father had passed away earlier in the day. I paid my respects to the family, and planned to attend the funeral the next evening. I made it there with my husband, and we watched as "Uncle" was sent on his final journey. The Hindu funeral is filled with many symbolically laden moments, and as the earthen pot was shattered, and Uncle's link with this earthly world broken, I felt the loud sound resonate within me...farewell to Uncle, and yes, before I know it, farewell to me too.

Some day I too will cross over into the spiritual world, some day all of us will make that journey. I listened to the eulogies by relatives, and I realized that Uncle had lived his life to the fullest as only he knew how to, and would always be remembered as someone who was a fighter.

Some day someone may stand to recount my days in a eulogy, and hopefully someone will say that no matter what life threw my way, I managed to survive it. No matter what IBD did to me, I managed to survive it. Perhaps more than just survive, perhaps I actually lived. Really lived.

Before we know it, we'll be gone, like the petals of a fragile flower perishing in the heat of the noonday sun. But before they perish they are radiant, they give beauty, they have a fragrance of sweetness that permeates the very air...they are a blessing. Seek the support of those with similar sufferings.. whatever those sufferings may be...so we can bless our fellow brethren, and be blessed in return. Live, love, laugh. And yes, cry. It's all part of being alive.

Thanks for reading,

Pav

Andrew Johnston - 'Make Me A Channel Of Your Peace' NEW Studio Performance

My Anthem : Bon Jovi - "It's My Life"

I Remember, Yet I Choose Also to Forget

Inspired by "Remembrance is a form of meeting, Forgetfulness is a form of freedom" : from "Sand and Foam" by Khalil Gibran, and events in my life.

Words were said that hurt me deeply, words I didn't deserve,

Words that burnt into my mind, and burnt away my love.

I was sad, and broken hearted, and my heart was grasped by pain,
I did not know how to break free, though I tried again and again.

As time passed I thought my pain would lessen and I could forgive,
But it took so long, time seemed to crawl and I barely managed to live.

And then this pain faded away as another took its place,
A more urgent need, a pressing pain clamouring for space.

I gave it rein, and let it work its way into my heart,
I dealt with death and the past as my father did depart.

I chose to put my prior pain aside and open up my soul,
I hoped to deal with the past and slowly become whole.

It seemed to happen, in smallish starts I felt my pain diminish,
And yet the healing and restoration never really finished.

My heart still broken, my soul burdened, my body felt defeat,
I spiralled down into a state of not being able to eat.

As days passed by I had fewer options and finally just the one,
And so it was that for me the unthinkable was done.

I lay on the table asleep with parts of me cut away and seized,
They removed the parts in me that were useless and diseased.

And yet I knew my heart and soul, my very inner being,
Also had parts that needed pruning and mending and healing.

As I mended you came to me, your hand reached out to mine,
I felt the love and the care, I knew we would be fine.

There was no need for words and lengthy recriminations,
I felt the love, forgiveness flowed, without explanations.

A burden fell away from me, I felt freedom anew,
All heaviness was gone, my heart felt like it flew.

And from that day we began again, you and I, my friend,
And so I hope to continue until the very end.

Words caused my heart to break, and pain flooded in,
Silence then mended it back again and joy dwells within.

I chose to forgive, I released my hurt and pain,
And in so doing I have found my friend again.

My prayer is that all will be well and friendship eternal be,
Despite the troubles and the woes of life for you and for me.

Pavitar Kaur Gill
21/04/10

An "Ode" to the Scone

Here's a fun poem I wrote last year about scones. I love writing "odes"

to just about anything that takes my fancy :)

AN "ODE" TO THE SCONE

I sliced you in half, but you did not resist,
My knife slicing through you in one swift twist.
I lovingly buttered you, covered you in jam and cream,
Throughout all this you did not scream.
I bit into you and then it began,
You trembled, you crumbled, the drippy jam ran.
I munched and as I did, I thought,
There's nothing quite like a scone well bought.

Pavitar Kaur Gill
Who had scones after a long time, with SJ at Fosters, in Holland V,
20/11/09

Musings in May on Motherhood

This week has been filled with memories for me. This is the week before my first child's 14th birthday, and I keep thinking of what it was like 14 years ago when I waited for him to be born. This week is also the week before Mother's Day, and I find my thoughts drawn to what motherhood has come to mean to me since that fateful week in early May 14 years ago.

I had read all the books I could lay my hands on about pregnancy and motherhood, and babies and children and armed with all this knowledge I was prepared to face the happiest moment of my life. It was indeed, till then, the happiest moment of my life... the day my eldest child was born on 10th May 1996, after 17 hours of labour.

He wasn't very keen on being born, as he was due on the 6th but seemed quite content to stay put. I even tried to induce labour by going for a long walk to get a choc fudge sundae from MacDonald's 4 kms away from my home, and as my hubby and I trudged along I really thought I was going to give birth right there on the beach! When we got to Mac's there were no choc fudge sundaes, so we had fries and took a cab home. All that walking for fries! And no baby in sight either!

But soon enough, in a few days, my water bag broke and I rushed off to the hospital at night all excited at the prospect of finally having him come out, and 17 hours later I held him in my arms and he opened his eyes and looked at me, and I knew that he knew me, and I was happy. So, very, happy.

And I have been happy ever since, well largely happy. :) He was such an easy baby I was inspired to have another 3 over time, juggling baby births with my health issues. It hasn't been easy managing 4 kids and chronic illness. It does get a little crazy at times. Some times I wonder if I should have ever had any kids at all, and if my life would have been easier and simpler, less complicated and less stressed without the worries of 4 kids. It isn't quite regret, just a sense of "the grass being greener on the other side". Quite a moot point really, since I do have them :)

I live for the moments when one of them says something hilariously funny or incredibly wise, when one of them goes out of his way to make somebody happy, or when they all get along, and life seems peachy. I live for the happy moments, of which there are many, that more than make up for the tense and sometimes scrappy moments that occur when 4 kids get on each other's nerves, when school breathes down everybody's necks and the daily grind is wearisome. I live for the smiles and the love I receive when I give freely to them, not in expectation of receiving in return, but simply because giving, while being part of my job or duty as a mother, is also my privilege and my honour, having been blessed with these gifts, my children.

Living through Crohn's as my children have grown has been tough. All parents grow up as their own children grow up. To some extent, our children are raising us, at least I think they are teaching me an amazing range of things about myself and the world, about love and hurt, about good and bad, about all the things we think are black and white but are actually shades of gray...my children taught me these things.

Growing up alongside my children as I have struggled with chronic illness has meant that while I have been giving I have also been receiving, sometimes disproportionately, and while I have been needed I have also been needy, and many days, simply too exhausted to do much. I have come to terms with the guilt all mothers face and the constant nagging feeling that they aren't good enough or doing enough for their children. I do what I can, we get through the day, we look forward to tomorrow, and sufficient unto the day is God's grace to get us by.

What a privilege it is to have children, and to be a mother. What a privilege it has been for me to grow alongside my kids, and I believe it is a privilege for them to know, firsthand, what it means to live a life of imperfection as personified by me. I think illness made me more compassionate and forgiving, more accepting of imperfection in myself and in others and just a better person generally. I do hope and believe that my kids can see that.

Many times I look at them and I see some element of myself in them, and then I see so much more that is them, entirely them and no one else, and I rejoice that I am not raising clones of myself, but people who will have their own minds, their own voices, their own thoughts, and who will find their own way in this world.

I love the following by Khalil Gibran (1883-1931) in Chapter 4 of "The Prophet". It beautifully sums up how I feel about children.

CHILDREN

And a woman who held a babe against her bosom said, "Speak to us of Children."
And he said:
Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you, yet they belong not to you.
You may give them your love but not your thoughts.
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.
You may strive to be like them, but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
You are the bows from which your children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite, and He bends you with His might that His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as he loves the arrow that flies, so He loves also the bow that is stable.

My musings this May on motherhood are happy ones. I hope they are happy ones for all mothers out there, and for all children too. Happy Mother's Day in advance, and to my dearest son, a very Happy 14th Birthday!

Thanks for reading!

Pav

A Poem On Grief, and a response

Grief

Grief came one day to visit me
He came quite uninvited.
So sudden and swift was he
I was completely unprepared.

Grief only comes for long stays
So he brings a big bag along;
Once opened up he displays
The many parts of his grief song.

First comes denial, full of disbelief,
Engulfing my heart and brain;
How does one begin to seek relief
While numbness hides the pain.

Anger comes fast upon denial’s heels
Now numb no longer but wounds bleed;
Why now, why me, why do I have to feel,
Tears flow and thoughts swim without heed.

If I just hadn’t said this, if only I hadn’t done that
Regret and sadness mingle with anger’s chorus;
While bargaining makes an entrance next
Desperate to understand things between us.

And just when it feels like I’ve cried all my tears
Depression follows with deep pain and sorrow;
The wounds of the soul gaping bare amidst fears
That I’ll always feel this way tomorrow.

Somewhere along the way comes the end
Where quietly grief ends his drawn out song;
Acceptance is the stage where I can mend,
I wait in tears; don’t let it be long.

Then grief will pack up and leave my soul
And I will stay and carry on,
Patched and mended, once more whole,
And hopefully a lot less forlorn.

Pavitar Kaur Gill

My friend Pauline Tan sent me this in reply to my poem on Grief (25th Feb)

Let not grief overstay his welcome
Take him firmly and show him the door
And while he stays let him make himself useful
Let his grief song make you something more

May the pain you endure illumine your heart
And show you visions you’ll never otherwise see
Though Grief may gnaw and bring you tears
Its servant you shall never be

In the turmoil and storm which Grief brings
Your feelings shout you are indeed alive
The denial, anger, regret and depression
Are but varied fashions of the cross

For strangely those whom He loves best of all
Also share most closely His pain
This is the paradox of being his beloved
For us to live is Christ, to die is gain.

Pauline Tan

I Went Again To See My Doctor/Patients Aplenty and Patience Scarce

This is a poem about doctor-patient relationships, something that interests me greatly. I am curious as to how patients view their doctors, and doctors view their patients, and  the communication, or lack thereof, that goes on between the two parties. This poem is a general expression of some of the struggles patients go through, and not a reflection of the standard of care I have received. Happily, I find myself living the last stanza of this poem :)

I Went Again To See My Doctor

I went again to see my doctor
As I was feeling rather ill,
I wasn’t quite excited about it
I went fighting against my will.

I’m back again with my chronic ailment
And I need more meds to get by,
I don’t know why I’m feeling torment
When I see my doctor I realize why.

Here’s a man who has no time for me
His every moment filled with stress,
I see the many patients he has to see
The time for me is so much less.

Why do I say I am doing fine
When my heart is full of grief,
I do not tell of the pain that’s mine
Just to see his look of relief.

And so I rush because I feel so rushed
And do not say what’s on my heart,
I want to gush but end up shushed
I leave out the real “Me” part.

“How are you, doctor, you look well,
Yes, it’s been a while”.
I say this as I really do care
It’s said with a little smile.

When he speaks it’s clear to see
He’s tired, overworked , almost sullen.
One wonders if it’s just for me
Or does this happen with everyone.

Sometimes the doctor tells a story
Of his own struggles and woes,
And for a moment there’s beauty
In the meeting of two souls.

How nice to share our burdens
To see each other as human beings,
But such is not the lot of patients
For whom doctors are super beings.

For unto him who holds all knowledge
Is given the power over me,
And if this inequity I do acknowledge
Such a lasting hold has he.

“You are to be told and you must hear
You do not know enough to judge,
I have no time for your every tear
I am too busy, I do too much.”

And so I bite my tongue and hold my thoughts
And when I leave I feel empty and yet full,
Bursting with tears unshed, with sorrow fraught
Wishing he cared, feeling like a fool.

Does it matter that my doctor care?
Do I need a human touch?
I get my meds each time I go there
Surely I musn’t ask too much.

And yet I know for sure my healing
Is not to body only bound
For I am more than just bodily being
In it are soul and spirit found.

When I find a doctor who understands
The varied needs that I do bring
I daresay I will grasp his hands
And never let him go for anything.

Pavitar Kaur Gill
26/02/09

Patients Aplenty and Patience Scarce

A poem expressing the woes of doctors, as perceived by a patient.


Patients Aplenty and Patience Scarce

Another day at the clinic,
Another day with patients galore.
Another day of feeling melancholic,
I can hardly take any more.

All day they troop into my room
Each and every one;
Wanting me to dispel their gloom
Me, a mere human.

I ask for symptoms to understand
What they are going through,
And hopefully I can recommend
Some action to help them too.

I get a story long and grey
Winding all about,
I lose myself along the way
Trying to sieve sense out.

Finally I think I see what’s there,
I say what I believe is true.
I tell what’s honest, right and fair,
I tell them what to do.

But doctor, can I ask something,
Are you sure that this is so?
I read online there’s other things
That can work as well, you know.

Aromatherapy and ayurvedic,
Herbal remedies and acupuncture
Doctor, you’re very allopathic
Perhaps for that there is a cure?

I’m not sure why my patient wonders
If I know these cures to be a remedy;
I went to med school for six long years
He's just been online for three.

The internet has helped them know
But wise they are not yet;
And I must be their spring board
For all the quack ideas they get.

And when I say I do not know
They give me looks of disbelief;
Then take the meds I give them
And often find relief.

I try to listen to their many troubles,
But woes aplenty I have also.
They do not seem to sense my struggles,
I do not think they care to know.

For why would they when the duty’s mine
And they pay a fee for my advice;
Their money’s worth is all and fine
And that for them will suffice.

And just as well that this is so
For so many, many a day do I see;
And torn and tired would I grow
If each of them wanted more of me.

For to whom should I give something more
And to whom should I give much less?
For each ought to be the same as the one before
None of them a prince or princess.

Yet there are the ones who think that doctors
Have far more time than we do,
Who want, nay demand, special favours
Imagining themselves to be who’s who.

I know so and so, my father’s friend,
My husband’s uncle's niece,
And if you don’t give me time without end
I’ll write a long, nasty piece.

The looming threat of malpractice suits,
The nasty complaint letter;
These are possibilities, rotten fruits,
Perhaps another career would’ve been better?

And so I tip-toe around the patients
Trying to remember my first love;
When medicine was my passion
And I thought that I could serve.

So dear patient if I appear quiet
And I seem in an awful hurry,
Do not think it is you whom I hurt
For it is I who must worry.

For with patients aplenty and patience scarce
I am losing myself in a haze,
Of patients rushing through my door in a farce
And myself left in a daze.

Such it will be until the system improves,
So patients do learn to wait,
Doctors must hang on to their dreams
And hope it won’t be too late.

Pavitar Kaur Gill

(Feb 2009)

When The Going Gets Tough (A Poem About Hope)

Here is a poem I wrote in 2007 when I needed to hold on through a bad patch with my health. I hang on to hope a lot... and this is a good season as any to revisit this, and share it.

WHEN THE GOING GETS TOUGH

When the going gets tough, the tough get going,
but no one ever says where.
Where the tough are going do they know
If they will find their rest there?

Does it matter if one knows the destination?
It's the journey everyone speaks volumes about.
But how long can one keep going on blindly
Till one's heart and mind fill with doubt?

Hope, it is said beats in their heart
As they fight the good fight each day.
Something unseen, untouched and yet felt,
Unless we send it away.

Amidst the tears, the fears, the pain of life
Hope calls out to say don't quit
Don't lose the war, the battles do count
Take my hand, we'll finish it.

Pavitar Kaur Gill
(2007)