Thursday, December 23, 2010

My Reason for the Season

It's Christmas time once again, and the New Year is almost upon us. That lovely time of the year when the first school term winds down, Papa takes time off work, and we all hang out together remembering the birth of Jesus as we enjoy our Christmas tree lights and plan gifts and get excited about the holidays, and the impending new year.

Very soon I shall bid goodbye to 2010 and welcome all the new challenges of 2011. I asked myself what those challenges were... and then I realized that in essence there are no new challenges, just the same old ones that carry forward through the years, at least that's how it works for me. There are no new resolutions, just the same ones that have plagued me for some time now.

Hardly cause to celebrate, I know. The fact that my imperfections haven't gone away. The fact that some of the things that troubled me 5, or 10 years ago still trouble me today. The fact that I might just grow really old and keel over the same person, having never really changed much over time.

But what's so bad about that anyway? I'm 43 years old. I've lived half my life. This old dog isn't learning any new tricks. I don't even know if I even want to learn any new tricks. Half the time I just want to roll over and play dead because I'm just so bone tired and weary and fed up of life, and the world seems like a depressing place with terrible injustice and poverty plaguing millions... but I digress. This is supposed to be about me :)

I think that for me this year, 2010, I want to thank God for me. Yes, for plain ol' me. For the rough edges, the imperfections, the failings, the weaknesses. I am grateful. Yes, I am indeed. Without all of them in my life I wouldn't need the grace of God or His love and mercy to get me through the day. I would be so self reliant I wouldn't need anyone in my life at all. But the truth is I really do need God, and people, and the realization that I do reminds me that I am human.

I am just so incredibly human. Frail. Fragile. Feeble. On so many levels. Like baby Jesus in the nativity scene, wrapped in swaddling clothes. And yet within him lay immense love, great hope and tremendous peace. Can one hold both joy and sorrow and not break? Apparently, one can.

Sometimes I feel so conflicted, and a little lost with my feelings. I sincerely intend to convey goodwill and charity and for love to emanate from my very pores, but that doesn't always happen. I know that many times I am just too tired to be nice. I want to be left alone. People exhaust me and tire me beyond belief, and yet even if they have no expectations of me, I have many expectations of myself.

Therein lies the trouble. I want to be many things that I am not always able to be. I feel inadequate. I feel guilty. I feel saddened. But at the heart of all that goes on this season, the very root of it all is truly love. The love of God shed abroad in our hearts and our lives through the gift of his Son. The love of family as we draw close and cherish each other and make our time special in our own way. The love of friends who share our lives and their love with us, and who bless us as we bless them.

The very love of God that compels me to love myself, just the way I am, despite whatever I may think of myself. The love of God that says to me that He loves me no matter what and nothing can ever separate me from the love of God. I am grateful, I am glad. I am me.

God's love. My reason for the season.

Have a Blessed Christmas, and a Very Happy New Year!

Thanks for reading.

Pav




Thursday, November 11, 2010

Please God, Spare My Kids

Some strange gastro bug got my 3 sons this week. The youngest had fever, so he stayed home, but the older boys, being teenagers, happily soldiered on to school until it was just too exhausting, and I could tell they really needed a rest. No fever, but stay home, please. No fun having tummy issues at school. No fun at all.

Having been diagnosed with Crohn's Disease in my early 30's I remain grateful that I got through school and Uni and all the challenges therein before I had to deal with chronic illness. Now that I have 4 children I am sometimes plagued by fears of their getting Crohn's. There is a genetic link to the disease. As with many other diseases, if a parent has it your own chances are increased, though with Inflammatory Bowel Disease the risk is higher if a sibling has it.

So every abdominal pain, every episode of food poisoning, every nausea incident, every one of those runny belly moments brings a stab of fear to my heart. I worry if it is something more serious than a passing bug. I want details of food intake, pain location, stool texture, quantity and frequency... my kids must find my interrogations annoying but they don't often object. I do think they see a passing shadow of worry on my face as I try to make light of it... I can't help worrying.

What causes Crohn's remains a mystery despite years of medical research. Some of the reasons mooted include bacterial infection that activates the immune system into overdrive, and it then never resets itself, and the body attacks it's own self. I cannot remember exposure to any particular bacteria, neither could I have shielded myself entirely. I refuse to be overly protective of my kids, in some fear of them catching a bug that could cause problems. Apart from general decent hygiene, and not eating poorly cooked food, especially meat, I don't insist that they eat overly sterile food either. Their home environment is reasonably clean but not too clean... I do so miss our home in Seletar Camp where the kids roamed the garden barefoot, tracking soil and mud into the house, playing for hours outdoors, building their immune systems in tandem with nature.

Some say a change in environment can trigger an immune response. I know I moved country from Malaysia to Singapore and a few years later Crohn's crept into my life. Would I have been well if I'd stayed home in KL forever? I don't know. Can I insist that my kids stay in Singapore for the rest of their lives so as to avoid problems? No, I can't. In fact, I encourage them to travel, and they've traveled, some more than others, to Malaysia, Indonesia, India, Nepal, Switzerland, Australia, New Zealand, Italy, Spain, the UK, Thailand, South Africa etc. I want them to see the world, the not so clean parts of it, as well as the highly sanitized portions. I want them to appreciate what they have, as they see others with far less. I want them to see their own place in a larger global picture. I suspect they will study abroad and eventually live abroad too. Go explore the world, find your place in it and thrive. I hope early exposure to new and different environments will toughen up their immune systems.

Some argue that a change to a largely western diet of fast food and high sugar content has caused problems like Crohn's. I never ate much fast food or sugar prior to getting Crohn's, so I don't think diet played a role in my case. I exercised a fair bit, had a decent metabolic rate and was well within my BMI. Now that I have Crohn's I have to be extra careful, because some things make it worse. So sugar laden stuff isn't easily available in our house, and I try to limit my kids' intake. Not entirely, because I don't think that's the best way, but it's rationed.

What do I tell my kids? I do tell them to make healthy choices, but it is not always possible, especially at school, and yes, they love pizza, and the occasional trip to MacD's. I ration these out, and I try to focus on freshly cooked food, and fruits and vegetables in decent doses. Will they always make the best dietary choices once they leave home? I don't know. I hope so, but they will have to take ownership of their own health some day, and I hope they will remember what I have tried to impress upon them.

Stress is supposed to affect the immune system and can cause problems too...but which one of us can live a stress free life in this world? I am told that stress is bad for me. Yes, I know it is, and yet where can I flee from it in this day and age? It surrounds me. It surrounds my kids. I try to reduce stress, for all of us, but some stress is really intrinsically needed for without it we might never accomplish much. So how to manage stress and make it work for you...these are skills for all of us to learn, alongside skills that allow us to relax and let go, to achieve that elusive balance that many spend their whole lives searching out.

What I can do for for my kids now is to allow them to live without fear, and to let them enjoy their lives, not worrying about things truly beyond their control. Who knows why and how I got Crohn's, but I pray my kids will be spared. I know what it means to live with this disease, and I wouldn't wish it on my enemies. Well, I can't think of any enemies... :)

Seriously though, go forth and live, without fear. I wish you well, always. And yes, please God, spare my kids.

Thanks for reading,
pav




Tuesday, October 26, 2010

A String of Pearls

Some days you wake up and you just know in your heart that today is going to be a fragile day. A day where things might shatter so easily because they all seem barely held together. I, myself, me... barely are my pearls strung together for the day before I feel tension in the string, and it's entirely possible that the string will snap and today all my pearls will fall to the ground and roll away, much to my distress. Loosen the string, lest it snap. Relax. Breathe deeply. Exhale. Repeat.

On days when fragility seems to overwhelm me I hide away. I am not fit for public consumption. Lest I turn a stomach, upset a mind or cause unhappiness in some way, I choose to be alone. Alone in the knowledge that this way I will hurt no one, this way no one will hurt me; this way the day will pass, and tomorrow will be a fresh start.

Today was a fragile day but I could not hide away. I had to meet people outside of home, I had to talk with strangers, I had to deal with life, full on in the face despite my wanting to be alone. Happily I managed it, but at a cost to myself. I hope I left everyone happy in my wake, but I am not happy. I am exhausted, drained, lifeless. I am also saddened. What saddens me I do not really know, but contact with people exhausted me today, and any surplus I had saved for a rainy day is thoroughly used up. I have nothing left to give, and nothing for myself, and that makes me resentful. I resent being resentful even. :)

Thankfully, tomorrow I do not need to face anyone outside of home/family. Thankfully, tomorrow I can gather my pearls and put them on, one by one in peace, by myself. A string of pearls reflecting who I am, representing my day, possibly even my life. Each pearl a jewel discovered through some struggle, some suffering, some pain. Each pearl precious in itself, and together a combination of many colours and shades, yet each perfectly round. A string of pearls I work on everyday, and on some days I make more progress than other days, yet each day I celebrate them. I remember them. I lovingly remind myself of them and of what they mean to me, and what I am to myself and to others, and I am comforted.

Thanks for reading.

Pav

Monday, October 18, 2010

Facing the Future Unforetold

Every now and then the thought comes to all of us...what if my life had been different? We wonder how our lives might be now had we taken a different path, or if events in our lives had happened differently. It's a very normal thing to think about, and isn't really full blown regret...maybe just a tinge of regret with remorse or a sense of sorrow at the past that has led to the present, and uncertainty about the future.

All of this can be magnified many times over for people who live with chronic illness, especially when illness and disability has visited them through no fault of their own. Then it is not so much the road not taken, or a decision made that turned bad or a matter of poor choices, but simply something that happened to them. Out of the blue, disease came upon them. It sneaked up and decided to pounce, and gobbled up a life. But rejoice, people say, that you are alive! Yes, you don't have cancer, be grateful!

And so the chronically ill remind themselves that they have so much to be grateful for, despite all that they have lost. The days, weeks, months, even years, eaten away by locusts, if you like... munched up by pain and trauma, turmoil and tears... pain so visceral and real that only someone else who has walked the same path of suffering can understand. Lost time that can never return. Time spent curled up in agony, hours spent trying to cope and make sense of what is essentially senseless... disease that comes out of nowhere and devours you bit by bit from the inside, leaving you hollowed out. Time that could have been better spent doing things more meaningful, investing in one's happiness, and the happiness of others, loved ones who depend on us, who need us, and yet for whom some days, we cannot be there. We are there physically, but trapped in a world of pain so acute, so sharp, so overwhelming that nothing else can penetrate our thoughts and feelings and we are numb to all around us.

But yes, we have plenty to be grateful for...for life and for love, and if we have these, then truly we are blessed. And so we swallow the pain, we bite back the tears, we pull ourselves up, we face the world, and in so doing we learn to forgive ourselves our shortcomings, our failures, our lack of being there for others, and we try to deal with the guilt. The guilt that damns us as we struggle on each day, the guilt that would pull us back into the quicksand of flooding thoughts that drown out the good in us and tells us we have failed. The guilt, that if left unchallenged would kill our soul and take away that last lingering hope within us, that perhaps something truly good and beautiful can come from our lives.

Yes, we have plenty to be grateful for each and every day. Each day anew. Each day afresh. Each day a chance to start over. Each day to thank God for life and love. To forgive ourselves our imperfect past, and to face the future unforetold... God grant us grace to face each day with Your strength, for we cannot, dare not, will not, contemplate doing it on our own. We would fail. And surely for that gift of grace alone, if not for anything else, I am grateful. Thank you, God. For life, and for love.

Thanks for reading.

Pav


Sunday, August 22, 2010

Cocooned in a Coma

For some weeks now I have been thinking of my late father's passing. He passed away on 26th September 2009 at the age of 75, and as the first anniversary comes round I find myself thinking about him a lot more. Sometimes late at night I remember the events that led to his demise, the memories are so real and fresh they bring tears, and I feel myself awash with grief and sadness again.

My father, Harbhajan Singh Gill, went to get his pacemaker checked at the National Heart Institute in Kuala Lumpur on August 25th. He loved that place, and having retired as a senior civil servant, he especially loved the benefits he received and believed in the care as being top notch. He certainly wouldn't have settled for anything less. :) He had had a triple bypass done there too, and a pacemaker inserted, and used to joke with us about his "ticker" and how it would give up on him some day.

While waiting for his check up he actually had a heart attack of some kind and died. By the time this was discovered and he was revived, almost 10 minutes had elapsed, and so my father's brain, having been starved of oxygen, was effectively dead. Because the resuscitation team had their duty to perform, his heart was revived but he was in a comatose state. I found out about this 2 days later, when my father's second wife told my brother in KL, and he called me in Singapore, and my sister in Melbourne. We began our respective journeys to KL with very heavy hearts, unsure of what we would find.

My parents, having separated when I was very young, had never really gotten along, and I was raised practically singlehandedly by my mother. Over the years I had had several encounters with my father in which some healing had occurred, the kind of healing that a child requires when knowing that a parent is unable to love them, for whatever reasons...religious differences, acrimonious relationships, memories of the past, pride...whatever the reasons were, I received very little love from my father, but I knew deep down in my own heart that I loved him.

As I journeyed to KL I found myself wondering about whether my father would be able to communicate with me. Would I be able to speak with him, and square the past, or would he be slipping away and was the ultimate end, death, imminent? When I got to KL I went to see him, and discovered that he was well and truly cocooned in a coma. The kind of state of limbo where his body was being kept going by various machines but his brain was non-functional. What conversation could I hope to have with him then? It became a monologue of sorts.

It was also an emotional roller coaster of grief and sadness, feelings long welled up and hidden away came to the fore, and for the first couple of weeks my every moment by his bedside was one of tears. Heavy, fat tears that fell so fast I could not stop them, neither did I try, because deep down inside I knew that I had to let them out. Whatever little time I was given by the ICU staff, by the demands of other relatives and friends and the knowledge that I was, in essence, an outsider...whatever little time I had with him was time that I used to tell him I loved him, to thank him for the gift of life as my father, to bless him with peace, and to say "I forgive you, Pa, please forgive me."

My father remained in a coma for 32 days, passing away eventually on 26th September, the day after I left KL and returned to Singapore to be with my family. I watched him over 32 days deteriorate from a fairly muscular man to one that had hollowed cheeks and poor muscle tone, swollen hands and feet as his kidneys failed and an opportunistic bacterial infection took over. How sad to watch someone wither away. I wondered then if it is better to have someone go suddenly and then deal with the grief of that abrupt departure, or to watch someone go slowly, feeling tortured in the process, imagining that their loved one is also being tortured, wondering whether to hope for a quick end to suffering on all sides, or to soldier on bravely come what may, even if the comatose state were to last months and years.

The thought crossed my mind that perhaps in this last stage of his life I would be given the chance to look after him and be the doting daughter that circumstances had not allowed me to be. In some idealistic rosy eyed moment I imagined myself lovingly tending him through the last few years of his life in a coma...but then reality intruded, in the form of my sensible family members who told me I wasn't well enough to undertake such a job, and it wasn't for me to decide these things anyway. It was for my father's wife to decide on his care. And the questions about his care troubled us all a fair bit. The thought proved daunting for some, and rightly so. The task of looking after someone in that condition is not an easy one. In the end, it did not matter because my father passed away without leaving the ICU.

I know being in a coma isn't quite a "chronic" condition in the sense that say, diabetes, or Crohn's disease or SLE is...but I wonder what it's like to be cocooned in a coma for months and years, seemingly perpetually asleep, and never in hope of awakening. Being transformed over time, slowly deteriorating into a state of being the living dead before the heart gives out and one is released into death, and the life hereafter as one believes. What is it really like to be in a coma? I hope never to find out.

While the doctors told us that brain function tests showed no brain activity, and they told us he couldn't feel anything, I never really believed that. While they couldn't quite say with certainty whether he heard us or not, they told us he could not respond. I never really believed that he couldn't hear us, and as for response, once while I read to him his eyes opened and he looked right at me...I have to say it gave me a fright! This was also explained away, but I didn't believe it. I didn't want to believe that it was pointless, I guess.

In some selfish way I am grateful for the 32 days that my father spent in a coma, because it gave all of us in the family time to come to terms with his impending death. I was able to be by his bedside, and I spoke to him, I sang to him, and I read to him, believing that he could hear me. Perhaps his auditory senses weren't functioning because his brain was gone, but I believe that there is more to man than just the physical. I believe there is the soul/spirit man too. That part that lives on when the physical body is gone. I like to think that part of him was listening. I like to think that part of him responded. I like to think it all meant something to him. And yes, it meant a lot to me. Perhaps it was all something I conjured up because I needed to believe that he knew how much I cared for him. But I don't think that in itself is wrong. People who say "you did it for yourself" miss the point...yes, I needed it too. Possibly a bit more than my dying father did, because I continue to live, and the living need hope, and healing, love and peace, a little more than those who leave this world.

I do hope and pray that my father received all of that from me as I watched over him. I do hope he is in a happy place. I pray for that. I do remember him with sadness, and grief, and longing, and pain, and the gamut of emotions that make us human. I am working towards remembering him with joy. In the early days after he went into a coma, and after his passing, the question that plagued me was "Pa, did you love me?" Months later, as I prepare for a simple memorial for his first anniversary on 26th September, I find myself asking "Did I love you, Pa?" and as I move from one question to the other, I am finding further closure and healing as the answers are "Yes" and "Yes". Yes, he loved me, and I loved him. I can let the memories of the past rest in peace, I can live in peace, and Pa, wherever you are, peace and love to you too.

Thanks for reading,
Pav

Saturday, August 7, 2010

A Stroke of Bad Luck

Last night, as my husband and I were entering the lift to our apartment, we found ourselves with some of our fellow residents. A family of 4 was with us, and my husband began a conversation with them. Yes, we're the sort of folks who like to talk to our neighbours, and fortunately our neighbours don't seem to mind. Not too sure what choice they have stuck in there with us but it's just our way of being civilized. Much nicer than staring into space avoiding eye contact.

This family was one that I remembered from the time we'd first moved into our apartment 15 years ago. We left and lived elsewhere for about 6 years before returning here, and have found that while some people have moved on, there are still some others who have remained in the condominium, and so they are our familiar faces, and the friendly ones who recognize us and who are happy to chat with us.

As my husband chatted I looked at the family, and smiled politely. The mother was doing the talking, and the daughter responded to questions, but the man and his son were quiet. Toward the end of our brief conversation, during which time I became animated upon discovering that the daughter was studying English Literature, the father looked at me and in that moment of eye contact between us, I learnt something new about him.

His eyes were red rimmed and watery, and his gaze was weak, and as I looked at him I took in the shriveled right hand that was visible to me, and the support that his son gave him...and it dawned on me that he had had a stroke. Somewhere in the interval between the time we left our condo, and the time we returned, the man that I remembered as being a lovely, chirpy, energetic, sweet man had undergone a transformation so severe that he would never be the same again.

A stroke is a terrible thing that can befall anyone, young or old. Somehow, blood supply to the brain is interrupted or disturbed and brain function suffers. Sometimes the damage to the brain is so severe that the person can die. Often, the damage leaves a person disabled to some degree. Some can walk, and eat, and speak a little after therapy, many can barely manage basic functions. While the stroke itself is fairly brief, it's consequences are long lasting and permanent. Persons with strokes face permanent disability, and must then live trapped in damaged bodies that require the help and care of others to some degree. Independence, something so prized by us all, goes out the window, and the stroke victim must rely on others for a range of things, depending on the severity of the stroke. Personal dignity and space need to be reinterpreted to allow for the intervention of doctors, nurses, therapists, and family members who will assist to help make life livable, hard as that may be to imagine.

Uncle, as I call him, could walk with some help, he looked like he could function a fair bit on his own, but in the look that we exchanged, I realized that he could not connect verbally with me. Perhaps he might have said something eventually, but he could not participate in the conversation at that point, he could not share his views, or comment on someone else's. Whatever was meant to have passed between us remained unsaid, lost in the ether where thoughts unvoiced and hopes unheard linger, never to emerge.

We reached our floor, and wished everyone a good weekend and happy National Day and exited the lift. Because the wife was the vocal one, our attention was drawn to her, and as the doors closed it was her face that I saw. She seemed tired. Her daughter had looked tired too. It was a tired family. And yet, there was a spark of something about them. They had come home together as a family from somewhere...I'm not sure where, but they had driven home, and Uncle had been with them, and even though they looked tired they were together.

That togetherness struck me. In the face of adversity, especially the adversity of illness, families either gel together, or fall apart. Illness makes or breaks them. There's nothing quite like chronic illness to bring the substance of a family to the fore. In the cauldron of suffering, pain, tears and frustration, the essence of each individual is tested and purified, and the dross rises up. The selfishness, the irritability, the anger...everything that shows up the lack of love within each of us is drawn out of us. Do we skim it away each day and begin anew the task of sacrificial love, or do we drown in the dross and find ourselves paralyzed by our weaknesses? This then is the challenge of life with imperfection staring us in the face. Imperfection in others, and imperfection in ourselves.

Uncle and his family have their act together, at least it seemed so to me. A stroke of bad luck befell them, but I think they will pull through. I do hope that my next encounter with him will be different. I hope that we will have a little more time together. I hope to hold his hand and look him in the eye and in that glance say "Hello". I hope to have the grace and compassion to know if it's better to leave him alone. I hope and pray that Uncle's remaining years bring him more joy than sadness, and that in the end, he will know that whatever his body has become, his was a life worth living.

Thanks for reading.

Pav


Sunday, July 25, 2010

My Soul Sang, My Spirit Soared

Yesterday was the best Saturday I have had in ages. After almost a year's absence I made it back to the St Francis Xavier Choir (SFx Choir) at St Ignatius Church. It's a choir of folks from the Philippines; men and women who work in Singapore, and who have amazing gifts, talents and a love for music and singing. They opened their hearts to me early last year and I joined them for a few sessions of singing at Mass on Saturdays, preceded by a session of choir practice each time.

The last time I sang with them was 22nd August 2009. Just 5 days after that I received news that my father was in a coma following a heart attack in Kuala Lumpur. I spend the next few weeks commuting between KL and Singapore, until he passed away on 26th September. The grief and pain I felt was so deep, that I couldn't bring myself to sing for a long time, and I barely made it to church, because I kept crying and the memories of growing up without a father, and living through divorce meant that there was a lot of healing that I had to go through. I told myself I needed time to heal, and after a few months I felt my soul had healed, but then my physical body fell apart.

After weeks of not being able to eat and a few hospital stays I finally had surgery, the details of which are described elsewhere in my blog. All through this time I didn't sing in the Choir neither did I really make it to church regularly. I hardly went because I was so tired. Leaving home was an effort, talking with people drained me, and I hardly sang. It's hard to sing when you don't eat. It's hard to sing when you're in pain. It's hard to sing of God's love and mercy when you're battling depression. Tears were never far from me, and while the pain of my father's passing faded into the background, the grief I felt at my own situation came to the fore...and so one pain replaced another. And again I told myself that I needed time to heal, and so I determined to let that time pass, and I knew in my heart that when I was well I would know it.

Yesterday I returned to the Choir. During the rehearsal we sang a few songs I was unfamiliar with, but the beauty of this Choir is that people like me : a rusty soprano past her prime, an absentee getting her life back on track, being chronically ill and constantly overwhelmed by life...someone like me can just come in and be transported to another realm. I felt like my very soul sang and my spirit soared, on the wings of eagles. I, a little eaglet, soared on the wings of giant eagles, the Choir members who welcomed me back into their group, and somehow my voice managed to come out and the parts that I felt were wobbly for me somehow just blended in...I don't know how or when it happened but it simply did.

During the practice I found myself in tears when we sang a beautiful song : Take and Receive. Surreptitiously wiping tears and dabbing my nose, and fobbing off the potential Drama Mama scene of my having a complete emotional collapse and wailing my guts out took some self control. :) The words of the song moved me deeply. Here they are :

TAKE AND RECEIVE

Take and receive, O Lord my liberty
Take all my will, my mind, my memory;
All things I hold and all I own are Thine,
Thine was the gift, to Thee I all resign.

Do Thou direct and govern all and sway,
Do what Thou wilt command and I obey:
Only Thy grace, Thy love on me bestow,
These make me rich, all else will I forego.

What a truly lovely song. It touched me on so many levels. My battlefield is my mind, and to some extent my memory. I tend to dwell on sadness and melancholy is never far...Sometimes my memory seems to vanish altogether, or at the very least I remember sad things...when surely my life has so much goodness and loveliness and blessings that should make me happy. And so this song reminded me to give all of who I am to God. And tears came to me when I sang the verse.

I cry easily. This is certainly true. Sometimes it doesn't take much to get me going. A scene of suffering and starvation on tv, or reading about the loss of a child, or feeling frustration...tears come quickly. Unbidden, and often unhidden. But that's just me. I am easily moved and overly sensitive. Yesterday I managed to get my tears under control, but I knew that very moment was special for me. And that feeling of it being special stayed with me throughout Mass.

Special because I had finally made my way back to the Choir, special because the wonderful Choir members were so welcoming and loving despite my having been far less loving in the past, special because I felt God's presence in the singing, and in the Mass, special because He touched my inner being. My soul, my spirit...when I left I felt renewed. Only God can do that. I felt humbled and also privileged, that in one special day, yesterday, God met with me and spoke to me, and I with Him. And He used the Choir as His Voice.

Thanks for reading :)

Pav

Monday, June 7, 2010

An Extraordinary Escape

If you live with any chronic illness that gives you pain and keeps you home on occasion, or in hospital for extended periods of time...plan to get away. Create a plan to escape somewhere. If you're bed bound, and hooked up to wires and tubes, try to go for a short walk around your hospital ward, and lengthen the distance each day. If you're in a flare up, and feverish, or in the case of Crohn's, having abdominal pain and are afraid to leave home for long...plan something short. Walk down to the shops, find out where the toilets are, and get going, even if it's slow steps. If you're in remission, plan a trip over a weekend or longer, with a loved one, or even alone...but get away from home, from work, from the limits of your world which impinge on you when you are ill. Plan an extraordinary escape, expand your horizons!

While in hospital 4 months ago awaiting my first bowel resection, appendectomy and gall bladder removal, I fantasized about the things I wanted to do when I was better. I made a wishlist of sorts. I wanted to eat a simple meal at my favourite Indian restaurant. I wanted to SCUBA dive again. I wanted to visit Rome with my husband again. I wanted to get back to my PhD and get out to meeting with colleagues and friends again.

It seemed so selfish...a list of "I wants", and I felt a little childish, but it gave me hope. Hope that some day soon I would actually get out of hospital and do the things "I wanted" to do. If you don't want anything, you aren't very likely to achieve anything...and as someone who lives with chronic illness, it's the hope that keeps the me going. The hope that soon, maybe next week, maybe next month, maybe next year, I WILL do the things I want to do. All this is in addition, or over and above, the things I must do, the obligatory things that one cannot run away from. These are the duties that one does, that are also enjoyed, but somehow not as much as the items on a wish list.

The non-obligatory wish list is the part that feeds the soul, filled with activities we choose to do because they mean something significant to us and are things we don't ordinarily do. They signify the unusual, the unique, the special, the extraordinary, the fanciful, the imaginative, the creative...the things that we do from time to time to break the monotony of the needful.

And so it was with a bounce in my step and a thrill in my heart that I marched off to Rome with my husband in late May for 8 nights. His workload suddenly cleared, and he knew that I had been dreaming of going back to Rome, having last visited in 2005. Plans were quickly made, and we had a very special time revisiting old haunts, discovering new treasures, and just getting away by ourselves without the kids. Having been through a lot earlier this year the time away was important for me as a milestone for my own recovery and journey with chronic illness and I felt overjoyed that I could make it really come true.

For the two of us the time away as a couple was magical, and romantic and simply so special. We rediscovered our love for each other...not that it had ever gone away, but perhaps it had been overshadowed by busy work schedules, long hospital stays, surgery, recovery, the needs of the children, the needs of the urgent triumphing over the needs of the important... and so we made time for the truly important in our marriage...the two of us.

At the end of the day, I like to think that no matter where we had gone, just the time together would have have been wonderful. I was blessed to be able to get away to Rome. The beauty of Rome for me is in her museums and the very sense of antiquity that permeates the entire city. Also, as a Catholic, praying in the chapels in St Peter's Basilica and attending Mass there moved me to tears. I sobbed tears of gratitude for the success of my surgery, I thanked God for all the many, many, good things He has blessed me with, and I also thanked Him for the bad...for some reason I felt that I had to say that. Thank you God for the bad, for all things that have happened to me, for the incurable Crohn's, for the painful and traumatic surgery, for my father's passing, for the pains and sorrows of the past - I thanked God for them all even as I thanked Him for my wonderful husband and my four lovely children.

I felt a peace in my soul. Perhaps I could have said those words and had that moment right here in my living room, but for some reason being there, in that special place in that special time with my special someone...it happened then, and it was...well, special. Words cannot quite describe it adequately. I won't soon forget it though. As I move on to other adventures, I will remember my prayer and the sense I had of an encounter. I am glad I had a visit to Rome on my wishlist.

The next item on my wishlist will involve another journey, but probably somewhere close by. Now to dream of my next SCUBA dive...when and where...and when I do get in the water, and when I am transported to the underwater world that I love so much I will know that I am living my life the way I want to...peppering the mundane with an extraordinary escape.

Thanks for reading!

Pav





Monday, May 24, 2010

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



Wednesday, May 12, 2010

Tuesday, May 11, 2010

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


Friday, May 7, 2010

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

Wednesday, May 5, 2010

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

Tuesday, May 4, 2010

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 genera 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)

Thursday, April 29, 2010

Experience, the Essential Educator

All day yesterday my thoughts were directed towards death and dying, the passing of my father, the intertwined lives of parents and children, the loss of a parent, grief and healing...all thoughts precipitated by the passing of my friends' mother after a battle with cancer. I had planned to go to her wake last night, and all day my thoughts gravitated towards these seemingly morbid thoughts. Somehow, I didn't consider them morbid. Instead, I felt that they were necessary because I was re-experiencing the loss and grief of my own father, and in some way, identifying with the loss my friends were experiencing.

I have attended many wakes and funerals, possibly with increasing frequency as I age. I recognized that for the first time I truly apprehended what it meant to lose a parent. I knew what it felt like for a child to see their parent's body lie in a coffin. I felt the pain my friends must have felt when their parent first passed away, the shock, the finality, the closure to a period of pain and illness... I could enter into these experiences alongside my friends because I too had been through them. I said nothing about these things, but I felt them. I think it resonated with my friends, and one of them very kindly asked about my father, recognizing that his passing was still fresh for me.

And yes, it is fresh. It is hard to go to a wake and not be reminded of what I endured, thoughthe circumstances are very different. Experience helped me identify, but it also brought the past alive and I did feel pain. When I came home I found myself tearful. Tears I had held back welled up in my eyes. I thought through the parallels and the disparities between circumstances and I relived some pain, but I let it go soon enough.

Experience is useful for people who live with chronic illness too...it educates us even as we live through it. My having surgery now allows me to identify with others who have had surgery. In the past it would have been some abstract and theoretical head knowledge of what surgery might have been like. Now it is real, visceral, concrete...I know it in my head and my heart and my guts...and of course I should...they got the chop! :)

As painful as experiencing something can be, each experience has its positive side. It can help us identify, help us empathize, help us help others who go through similar experiences. I choose to cherish my experiences then, for they go towards making me, ME. Even the "bad" experiences can be used for good if I choose to look for the good in them. I do choose, and I cherish. My experiences are an essential educator that have taught me how to be a better person. I am not afraid of what experiences may come. I embrace them.

Thanks for reading!

Pav


Wednesday, April 28, 2010

Defying Being Defined by Disease

I am more than the sum of my bodily parts. I am more than the soul that inhabits my body. I am a part of something bigger than myself. I am part of humanity. That sea of bodies and their incumbent souls that moves upon this earth as would many millions of ants upon the sand.

And like the ants that swarm about, each one similar and yet uniquely different, so too in this sea of people are we similar and yet not the same. Bodies that look and function the same, and yet the indwelling soul distinctly different and apart.

And unlike the ants that scurry about, each one dedicated to its own task for the survival of the colony, we do not live and work for the survival, the existence or even the betterment of humanity. We live pretty much for ourselves.

Living for myself in my own little world takes me away from my fellow brethren with whom I have an unbreakable bond. Living for myself means I am isolated from that which makes me whole. Living for myself cripples my soul.

And yet to live for others requires energy. Energy to listen, to talk, to visit, to be with in silence...the kind of energy that is life giving and yet draining. It gives life to those who receive it and drains those who give it. I do not have that energy these days. I am drained simply by being.

To live for others requires love. Love to put aside one's own desires and noisy needs and to listen to others speak of their own struggles and troubles. In giving this love one receives love also, and life is enriched. I do not have that love because often times I am drowning in my own needs and struggles and troubles.

A life lived for others demands an openness and strength of heart. A heart that gives and also receives. A heart that feels the pain of others but can bear that pain without falling apart itself. I do not have that heart. I feel too deeply, fall apart too easily, the sorrows of this world affect me to my core. I build walls around my heart to keep out the pain and in so doing, my brothers and sisters too.

But this was not always so. In a not so distant past I lived more freely for others. I enjoyed nothing more. I found meaning in a life of service and in giving of myself. But Crohn's Disease changed all that. I now find it all too much. Exhaustion, and the side effects of medication make it difficult for me to function some days, so much so that I have had to draw a line around the few that I can live for, and live with, and that understand me and what I am going through, and for me that is enough.

Is my life, my very existence, being defined by disease? I ask myself this often. I have changed in many ways since my illness, but I have also aged, and how many of us have the energy we had at 40 that we once had at 20? I have had 4 kids, and how many Mums out there can find the energy or time to do much for others, when really being there for family takes everything out of us?

I defy being defined by disease. Yes, it is a big part of my life. Yes, not a single day passes when I don't think about it. Yes, I am changed. But I embrace myself. This new me isn't a "bad" me. It's a focussed me. One who has recognized her limitations and is honest to herself in saying that she cannot be all things to all people, just some things to a very few people.

I am more than the sum of all my bodily parts, diseased or otherwise. I am more than my soul trapped in a decaying body. I belong to the sea that is humanity, and yet within that sea, I am a secret cove, where people who know how to find me may find refuge and rest, and peace from the storms of life...a listening ear, a sympathetic and empathetic heart, laughter and tears, and whatever else I can offer.

If you're reading this, well, you've found me :)


Thanks for reading!

Pav



Tuesday, April 27, 2010

Collateral Damage

Today was a tough day for me. I am adjusting my medications, weaning off steroids and increasing immuno-suppressants to keep me in remission from Crohn's after a very successful surgery. The difficulty with my medication is the side effects I need to tolerate. They can be so unbearable at times, and some days I don't feel like myself at all.

Weaning off steroids is a tough job. I am now down to a tiny dose, 5 mgs, on alternate days with the aim of stopping altogether after 4 weeks or so. I didn't take any yesterday, and so I took some today, and within hours I began to feel the effects. I already had an aching body, a headache, photo-sensitivity that hurt my eyes etc from the immuno-suppressant, and the steroids made me edgy and irritable and in no time at all I found myself barking...at the kids.

This, for me, is the hardest part of living with chronic illness - the collateral damage that happens while battling Crohn's, and in my case it happens to my kids. There was a mix up about CCA's and pick-up times, and I got 2 phone calls with my sons protesting that they couldn't find their sister...I barked and got mad because I was miles away and I didn't have a clue where she was either...but neither did they! Eventually she was found in the Music Room attending her singing class which I had forgotten all about. Oh my. Apologies issued to my dear sons.

Then there was Maths homework or rather class work to finish because my girl took her time in class, and so I got an email from the teacher and we tried doing the work. Ooops, Mama wasn't in the right mental state, and so we spiralled into a tense state of my scolding her and she tremblingly fighting off tears. Oh dear. Apologies to my daughter.

And then my youngest son wanted to watch a movie before bed time...after playing on the X-Box. There was just no time left at all. Barked at him and told him in no uncertain terms that he couldn't because he was due to go to bed. Tears and unhappiness. Oh no! Another unhappy child.

What a day! A week's unhappiness squeezed into one sad day. I found myself in tears too. I understood what I was dealing with in terms of my meds, but how could I explain that to my kids? And how unfair for them too, to have to suffer in this manner. But this is one of the realities of life with chronic illness. When the patient has a bad day, for whatever reason, be it pain, medication, depression, etc many times others around them suffer too.

There was a silver lining in the midst of it...my eldest son showed a maturity beyond his almost 14 years. He spoke calmly to me and quoted from his life sciences class today, that scolding and shouting don't help a child learn, or respond well, and it stresses them etc, and he offered to help his sister too... I was amazed and terribly embarrassed! I knew all that, but in practice it had flown out the window, and my own child was telling me how to parent... and he was right too! I am glad I took it in the right spirit instead of brushing him off. I later made up with him too and told him how much I appreciated his wisdom.

All ended well, and tomorrow a little extra time on the X-Box will mend everything and we'll carry on as we pretty much do, in relative peace. I do hope I can get a handle on myself, despite meds or anything else. I so desperately want to be a good example to my kids, and how to be one if I bark, and scold, and dissolve into tears in this manner? Some days I comfort myself that other parents also have bad days...but then no one ever talks of them, and so I'm not too sure if I'm normal or a sad and terrible aberration on the face of planet parent. oooh drama mama alert :)

I stand back some days and I am amazed that my kids are decent and normal kids (as far as I can tell!) and I thank God for that. I thank God that He is teaching me that I am not the centre of their universe, and that despite my weaknesses and faults, which are many, my family will be alright. I pray for that often, more so than for my own personal health or gain or anything else.

I remember a book title I saw years ago that I have mentioned elsewhere in my blog, but which bears repeating here : "If Mama Ain't Happy, Ain't Nobody Happy!". Today I saw that to be true. It was real. I wasn't in control, and everyone was unhappy...thankfully Papa came home and saved the day :) Wonderful Papa who is so cool and calm and collected...I thank God for him too!

What then to do with myself and my meds and life and its stresses? I had a good cry, apologized to those involved, made restoration and have stopped hating myself. I think tomorrow might just well be a very good day. I live in hope that TOMORROW WILL BE A BETTER DAY! Maybe I should go out for awhile...wander about and be at large and burn off a bit of my edgy energy, and then come home relieved to be back and happy to see everyone...I think that's a plan! I hope it works! :)

Thanks for reading!

pav

Monday, April 12, 2010

8 Weeks on the Road to Recovery

Two nights ago, (9th April) was the 8th week marker for me. 8 weeks post surgery on the Road to Recovery. I had been thinking about writing in my blog about my experience, and what it meant to me, but somehow I never got around to putting my many thoughts down. An old friend hoped to read about my post-op reflections, and well, I can’t disappoint a friend can I? And I do so love an audience J Here’s to you, Puni, and thanks for wanting to know!

In my last blog post I wrote about the events leading up to surgery. While the doctors pored over CT and XRay films I did my own pre-op prep. I had a haircut and waited as patiently as I could for my doc to announce the day. My heart leapt in excitement when he came by and told me all systems were go for 12th Feb. I had never felt so ready for that day. Finally!

I could barely wait. I was excited and also anxious, but more excited really. The same way I felt when I happily and cheerfully went off to have my first baby in May 1996. Having read all about it I had no clue what was in store for me, really. Just a lot of theory and no experience. I woke up early on the 12th feeling a sense of anticipation. I was told I was scheduled to be wheeled away at about 6pm, and the hours seemed to wear on.

An Aunt, Kay, came to spend time with me and to pray with me in the evening. I was very encouraged by the prayer, and I felt comforted. In fact, I felt myself drift away to a very quiet and calm place, and a peace descended on my soul. It was a truly supernatural experience for me. I was grateful for her company and her taking the time to spend about 6 hours with me, and later with my husband, while I was in surgery.

I remember being worried about what Kay and my husband would have for dinner that night while I was in surgery, and so I helped plan a really nice dinner for them. My husband had treated me to a VIP suite at a private hospital, and the menu was simply quite amazing, if one could actually eat any of it. So after consulting Kay I ordered French Onion Soup and Caesar’s Salad as entrees, and Chicken Nasi Briyani and Beef Fillet Steak for mains, Chocolate Cake and Apple Pie for dessert, and juices and tea for drinks. I was so happy that they were going to be well taken of food wise in my absence. Strange as it may seem, it gave me pleasure to know that they would be eating a hearty meal, and indeed it was very hearty!

I was in the shower when suddenly my gastro consultant came by to see me. He was leaving for Chinese New Year holidays overseas, and I was to be left in the capable hands of the surgeon, the anesthetist and the pain management team, all of whom I had met before. I rushed out to speak to him and he prayed for me too. I was deeply appreciative of his prayer. We said our goodbyes, and I told him that by the time he got back a few days later I would be running about the wards, and he’d never guess I’d had surgery. J

They came to get me early, and popped a dormicum in my hand with literally 2 sips of water in a tiny little cup. My stomach had to remain empty for surgery, but two tiny sips were okay. The dormicum was to keep me calm and help me sleep. We left the room, hubby and Kay trooping along, with me on the bed in a blue gown feeling a little naked, but happily covered in a thick white blanket. As I was being wheeled away I looked up at the ceiling lights, and thought of how in the movies they always flash by so fast. They didn’t flash by in my case as I wasn’t being rushed anywhere, and my life didn’t flash before my eyes either. I made a joke or two, kept up a smile, and tried to make eye contact with the orderly pulling my bed along, but he remained rather aloof. Must be too many patients a day to care for anyone in particular, I guess. As we reached the “No Entry” doors, I said my quick goodbyes, told hubby and Kay I would be fine, squeezed their hands and vanished as the doors closed behind me. I was glad they would have a nice dinner together but my eyes filled with tears and I was embarrassed because finally, yes, finally, the orderly looked me in the eye, but his look was so vacant I sobered up immediately, not wanting to be thought of as a baby or worse, a drama mama J.

I was wheeled to a corridor in front of yet another set of big doors which were open, and beyond were the actual operating theaters. Someone approached me and then asked me the usual questions…name, IC number, do I have dentures etc. The sort of questions they ask you almost everywhere else in the hospital ad nauseum . And then it happened…I floated away. I was completely and utterly gone. I have no idea of what happened to me after that until I woke up 4 hours later.

The surgeon had toyed with the idea of parking me in the ICU for the night for close surveillance, but after the surgery he decided I didn’t need it and I was sent back to my room where my husband and Kay were waiting. It was now past 10pm, and the surgery had taken longer than expected. I remember opening my eyes and seeing them there, and thanking them and then I drifted away in a morphine daze.

The morphine helped with pain, but made me nauseous the next day. I tried to manage with less, but it was painful. I tried switching to pethidine, but that also affected me. I had never taken these powerful drugs, so I was completely naïve to them. In the end I managed with very little morphine for a couple of days, and then switched to panadol suppositories which helped a lot with far less side effects. The net effect of going off morphine early is that my guts got going earlier, I was less nauseous, I walked by the second day, and I felt better overall. I could manage the pain, though sometimes it was tough. The morphine also gave me weird dreams and I never felt rested. How could I when I was with McGyver in a science fiction movie, running across open fields and swimming with whales in the ocean? I was exhausted!

My hubby later told me that as he was driving home that first night he met the surgeon in the hospital carpark, and so they had a short chat during which he said that they had removed my appendix, my gallbladder and about 30 cm of small intestine, a lot more that we had earlier anticipated. Apparently there were 3 more strictures forming and I would have been back for surgery sooner than later if he hadn’t taken them out. I was rather shocked by the 30 cms, but I have come to accept it now as something that needed to be done.

As I had been lying in bed for so long prior to surgery, due to being hooked up to so many tubes, my muscles had become weak, and so when I began my first walk on the second day post-op I was exhausted by a short stroll. The nurses had to help me as I had a catheter and urine bag, a drip for meds, another line for liquid feeding (TNP), a tube and bottles for wound drainage and a very sore wound. Basically I clanked about the ward like some Frankensteinian creation…I scared myself!

I did pause and glare for dramatic effect at some visitors next door who seemed to think nothing of standing outside my closed door talking at the top of their voices, and crowding around the doorway of their VIP patient, the Governor of some SEA country…it was so rude and so annoying. My glare and my state was enough to scare some of them…they behaved much better afterwards. J

I waited in anticipation of tubes being removed and the first one to go was the naso-gastric tube, a very annoying tube shoved down my nose and into my stomach to help drain liquids. Green hideous stuff came out every now and then and phlegm too because it is common to have some post-op. I hated that tube because my nose got sore, my throat hurt from it, and the hideous, bilious liquids nauseated me every time the nurses came to suction the bag and empty it.

My surgeon came by and on the 3rd day decided to remove it much to my joy. I wanted the nurses to do it gently, but he said no need, he would do it, and in 2 quick pulls it was out, much to my relief. It was painlessly removed and I began to feel a little less like a freak show.

Later that day the catheter came out and I was relieved because I had a feeling that my bladder had been bursting for days, but the nurses said that my liquid input was equal to liquid output and so I was doing fine. I was tormented by lower back pain because of this full feeling, and when the catheter came out I was so glad to be off to the toilet even though it meant a lot more walking. The nurses were worried whether I would be able to pee again after the catheter…but I had no problems at all. Apparently some patients do have trouble and it takes them a while to readjust. I was relieved I was able to do it and didn’t need a bedpan or anything like that.

Eventually the central catheter line inserted into my vein had to come out as I no longer needed liquid feeding and was on clear soups. Later my wound drainage tubes would come out too, the last of my tubes. All of these were removed painlessly which amazed me because I had been under either local or general anesthesia when they had been inserted! I was relieved to be finally free of tubes and able to move more freely, but that only happened around day 6 post-op.

I recognized in myself a strong streak of independence that I had seen in my maternal Grandma who till her last days insisted on bathing herself and cooking for herself. I, too, valued my independence and found it hard to receive help from the nurses. Prior to surgery I insisted on bathing myself even though the nurses offered to help because they worried I was weak. I let them plastic wrap my left arm to keep it dry, but managed showering and hair washing myself, and I felt a sense of accomplishment every time. What tiny shreds of dignity I had left I held on to…

Post-op it was too much for me to manage a shower, and I wasn’t expected to either for the first few days. A nurse came by to offer me a wipe wash on the 3rd day, and so we navigated tubes and drip stands, the changing of the gowns, hair and teeth brushing and basically I started looking and feeling human again. Not being on morphine too much helped tremendously. The surgeon and the nurses remarked that I was doing very well, and I felt better with each passing day. I walked more each day around the ward, I glared a lot less at noisy neighbours J , I managed a walk on day 6 post-op to the hospital gardens all by myself, having done 9 rounds of the ward the day before and getting rather bored and feeling trapped.

I did not start eating till a few days after surgery, and even then I began with clear soup, and then plain porridge and some tea in the morning. My fantasy then was to have chee cheong fun, a nice yummy soft plain rice noodle dish with plum sauce, and the first time my doctor allowed me to have it…it tasted like heaven! My first real meal in over 50 days. I had it for breakfast and lunch even after I left the hospital…J I found though that immediately post-op I was not in a hurry to eat until the effects of the morphine left me completely. My surgeon was keen on testing my system, but I was reluctant and so began with clear soups for a couple of days first, culminating in chee cheong fun upon discharge from hospital.

One of the funniest things about being a gastro patient post surgery is that the surgeon was literally obsessed with whether I had passed gas…this passing of gas is the sign that the system is working. Everyday he would ask me if I had passed gas, and then the nurses asked me questions too…what colour and texture is the stool, what quantity, did you collect urine for measurement, any gas yet? A myriad of questions for me throughout the whole day. I felt like a sick baby…minus the diapers!

These sorts of things can dehumanize and can embarrass a patient, but for many patients with IBD, these issues are commonplace. They are part and parcel of everyone’s lives, just maybe a bit more so in ours. And so it was a happy occasion when gas was passed, and it was duly noted in my file, and reported back to my surgeon who was ever so pleased though he wanted to know if the nurses had heard it…fortunately on one occasion a nurse was there. Sigh. I found myself beyond embarrassment with these lovely nurses who laughed along with me and seemed to enjoy my jokes. I told them they were lovely nurses, they said I was a lovely patient… and so we all got along nicely.

I eventually overcame my embarrassment at needing help to manage a shower. I was taped and plastic wrapped in strategic places, and then I managed to shower myself but needed help getting dried and dressed. I made jokes about my lack of shapeliness, and how all the nurses looked so slim, and of course we happily blamed the four kids for my loss. Through much laughter we made our way through the embarrassing moments. Embarrassing for me but not for the nurses…they have seen it all.

There was one night nurse of whom I became very fond and I shall never forget her. She was from China, and we were able to communicate quite well. She laughed at my pathetic Mandarin, and she had a son in China, so we had a few chats about life. She saw me through a rough night, in fact the Night of the Passing of the Gas…that fateful night my digestive system woke up and the bile in my system had nowhere to go as I no longer had a gallbladder to store it and for some reason I kept having to go to the toilet.

I would ring the bell for help, she would come running, help me sit up, unplug my drips stand, wheel it and help me to the toilet, come back when I called, and she would help wash and clean me up. I just couldn’t manage doing it myself because my abdominal wound didn’t allow me to move too much. And so we formed a pattern and made many trips one night…possibly even 10 trips. She never complained, she was very kind, she helped me get over my embarrassment at requiring help, and we made a decent team.

I did break down when I was alone though…I felt overwhelmed by everything. By the big wound that seemed so scary I didn’t dare look at it, by the 4 small laparoscopic wounds that hurt but seemed tiny in comparison, by the need to ask for help for things I had always managed myself, by the loss of my dignity and privacy, by the feeling that at 42 I felt like an 80 year old invalid, by the invasion into my life of medical staff, medical procedures, by the removal of bits and parts of me, by the fear that the disease would come back and all of this would be in vain…I broke down briefly and let myself cry. But not for long. I knew deep down that what was done was done, and it was for the best. Someday soon I would eat again. Someday soon I would be normal again even if I always had scars and parts of me were gone. The essence of me would remain, or so I hoped.

But the essence of me became frail and fragile. I do not know if it is due to the surgery or the starvation prior to it or a combination of both ranging over almost 3 months…starvation, surgery, recovery. It has taken me 3 months to feel less frail. I remember desperately wanting to be discharged from hospital despite having a low grade fever…I was allowed home and would return in a few days for a check up. I desperately missed my 4 kids, and had their photos in my hospital room, and I really needed to go home to them. When I went home I felt like I was back where I belonged. It was wonderful…but after a few hours reality set in that I was on my own with a wound that was still rather fresh, 9 days old, and I didn’t know if I could bathe myself or manage the kids, and I didn’t have the nurses to help me…and I did have a mini collapse! Again, I was overwhelmed. The rest of the family left me alone to rest…but I had difficulty getting up on my own, reaching for my stuff hurt, and just the trip home had exhausted me beyond words. I was reluctant to trouble anyone, but at the same time I needed help, and on some level I was even annoyed that no one realized this… then I told myself that mine was the first experience in the family, and if I needed help I would have to spell it out clearly.

And so I did a better job at communicating my needs and getting the help I needed, and everyone was so helpful that I managed to manage…and as the weeks passed I felt stronger and stronger. My husband and the children were so kind and helpful that I was overwhelmed, not by my situation or sadness, or fear or anything except gratitude at their attitude. I asked for help and received it, and many, many times I was blessed even without my asking. At the same time, I had a network of close family and friends praying for me and I updated them daily. I was amazed at the dedication of many who kept me in prayer and in their thoughts. It made a tremendous difference to me, and to my recovery. I was told it would take 6-8 weeks to recover fully, and at 8 weeks now I can safely say I do feel quite recovered.

Physically, I feel better and the wound has healed well despite requiring two squeezing sessions with the surgeon because of fluid accumulation and slight swelling. (It’s an agony being squeezed…but very necessary to avoid infection). Emotionally, I feel better too…I can look at my wound and not feel tearful and fearful as I have earlier on. I remember thinking that I had been violated in some way…a hole made into me and things taken out. How awful the thought had been, and my knees would literally go weak at the thought of it. Now I am no longer upset by it. It is there, that’s all.

In the early weeks after surgery I remember thinking I had been silly to have been so excited about surgery, because in reality it hurt like nothing I had felt before. Even childbirth without pain relief had seemed easier to me. But as with childbirth, the pain of the post-op road to recovery tends to fade with time. If we never forget physical pain, women would never have more than one child. People would never have more than one surgery. I think that if I had to go through it all again I would be less excited but more emotionally prepared, and certainly much more aware of what to expect.

I am hoping never to need surgery again. I can now eat fairly normally, and have begun immuno-suppressant medications to keep me in remission and prevent recurrence of the Crohn’s. I do hope it works and I don’t ever need to starve again or be opened up on an operating table again. I live with side effects from the meds, and they can be depressing, but I am hoping to get used to them, and have a better quality of life, and a sense of normalcy that is more in line with the rest of the family’s, and to be able to live and do all the things I want to do. I am battling the flu now because my immune system is compromised and I catch bugs so much more easily, but I do think I will recover soon and feel better. I live in hope!

At my last appointment with my surgeon, when he said to see him in 6 months unless something cropped up earlier, I realized that I was well and truly discharged from his care. He said something to me as he looked into my eyes. He said that I had done very well through what had been a very difficult time, and a dangerous surgery. As I look back on all that has happened I realize that I have indeed done well. I have survived something dangerous and difficult and I have come out stronger. I feel it, now, at 8 weeks post-op more than ever since the surgery.

I know that I made it with the help of great healthcare professionals and the prayers and love of my family and many friends. I was very uplifted through it all, even in my darkest moments I have not felt abandoned. I am grateful to God for His care and the many manifestations of His love I have seen in the people in my life. My faith is stronger, my hope is greater, my heart is overwhelmed with gratitude. I am well and truly blessed.

Thanks for reading!

Pav