Tuesday, December 10, 2013

Satisfy My Soul

Every morning I ask God to love me, and I tell Him how much I love Him. I want to know the deep and abiding love of my Creator, so that my soul can be satisfied, and so that I can then be free to love others. How can we love others when our own souls are so hungry and unfulfilled? Our love would be selfish and grasping rather than generous and giving. It would be all about our need and our lack and we would never be able to truly give of ourselves because we would always be wanting from others only what God can give us - truly unconditional love and acceptance, and a deep sense of who we really are and our place in this world.

When we have found that love in God we can place Him in the centre of our lives and from a place of peace and contentment we can reach out to others with a genuine and generous love, knowing that even if we are not loved in return, even if we are hated or reviled, even if we should perish, God Himself is at work in and through our lives. What greater place is there to exist in and live from than the very love of God Himself, He who sustains the universe, and also satisfies my soul? Every morning I ask God to love me, and to satisfy my soul with His pure and unchanging love. Every morning I thank Him for the gift of life, for His love, and the privilege to live for Him.

If my soul is satisfied then the rest of me can learn to fall in line. In ordering things rightly, in allowing the soul to lead guided by the Spirit of God Himself, we will find our bodies, minds, intellects and wills following suit. All can and will be guided by God if we surrender to Him. One of my favourite prayers by St Ignatius of Loyola is "Take and Receive" :

"Take Lord, and receive all my liberty, my memory, my understanding, and my entire will, all that I have and possess. Thou hast given all to me. To Thee, O lord, I return it. All is Thine, dispose of it wholly according to Thy will. Give me Thy love and thy grace, for this is sufficient for me."

At my 30 day retreat in Sydney, many days were spent contemplating the love of God, and responding to His unending love and the many gifts He continues to pour into my life. This prayer is a very natural response to a loving God who has held back nothing, given of Himself, given even His own Self, and continues to give through all of time... what better response is there to a loving God than to give all that I am back to Him? Everything is gift, and I love the Giver more than the gifts, I am happy to return everything to Him. Take all that I am, receive everything of me, only give me your love and your grace. I need nothing else. My soul is satisfied, God, in You.

Thanks for reading,


Monday, December 2, 2013

Blessed are the weak, the helpless, and the poor in body... for they shall need God.

Some say religion is for those who need a crutch. Others say God is created in the mind of the weak and the poor to justify their suffering and to give them something to look forward to after they escape their mortal bodies and enter into eternity. Whatever the reasons why we think of God or look to our Creator it certainly is the case that the weak, the helpless, those in pain and those who suffer find solace in Him and the idea of life in the hereafter.

What happens once our mortal bodies perish as they inevitably will some day, and what happens to the essence of who we truly are, our very souls? Some say there is no such thing as a soul and that death brings the ultimate end. I think that we do have souls that are the actual essence of ourselves, and in which is distilled everything that makes us who we are. I believe that God breathed into us something of Himself when He gave us life, and what our souls are at our death is what we have done with that God breathed life essence gifted to us.

Can a soul prosper and grow when the body that contains it is in pain and is suffering? Can the soul that houses our essence, our feelings, our emotions, our very selves, thrive when people live with chronic illness? Does the daily battle with illness eat away at the essence of who we are and leave us gnarled and joyless because life is difficult? Yes, illness can do that to a soul. It can take away happiness in so many ways and deprive us of all that is good in life. Illness can eat us up on the inside and leave us hollowed out and empty, cavernous and echoing with the silence of a dead soul. If we let it do that.

How can one try to live without dying slowly on the inside from whatever difficulties life offers us? Illness is but only one of many things that can devastate lives, break hearts, rob of us of our joy and leave us bleeding from wounds that never seem to heal. Chronic illness that never goes away but remains like an unwanted guest, or a dripping tap, sometimes quietly reminding you of its presence, other times screaming noisily like a jack hammer gone wild but always unwelcome, always an intruder, always a spanner in the works, ever the uninvited guest that one must learn to live with and stay sane.

My soul has survived 17 years of chronic illness. I was never sure I would or could learn to live with illness and stay sane. And yet that's just what I have managed to do somehow. And that's what lots of people do everyday with diabetes, heart problems, severe disability, mental challenges, and just about any chronic illness you can throw at them. How do people manage everyday for years and years? Why don't they just curl up in despair and give up hope? I think there are some things that can be helpful, at least they've helped me.

The first step is to accept what is happening to our bodies and to recognize that many things are simply beyond our control. We can't control our illnesses but only manage them to the best of our ability. With loss of control comes great frustration and even anger, and those are justified emotions. But what does one do with these feelings that tend to bring with them destructive negativity and can damage our souls and the lives of others around us? Some say expressing anger is a good way to deal with it. I think it is good to acknowledge the emotion but not to express it as such. Anger destroys. Frustration that is pent up and allowed to grow into anger can be very destructive. What does one do with the anger and frustration then?

People find help in different ways and all sorts of things can be useful. I've rediscovered recently that for me the only thing that works is to go to God. I spend time crying it all out to Him. I read the scriptures, I pray, I cry some more. I tell Him that I accept all things from Him, both good and bad. I don't blame Him for my illness, I see it as just one of those things that happened to me. I thank Him that it's been pretty manageable for now and I ask that I might continue to be fairly well for some time more. I even ask to be healed completely, but I am able to add, "Not my will, but Yours, Lord". I recognize what I am in my place in the universe. I am the creation not the Creator, I am the clay in the Potter's hands, the canvas the Artist paints on, the finely crafted sculpture of the Master Craftsman.  I am in awe of a loving God who created me, who loves me, and who wants to prosper my soul, even if my perishing body can't keep up.

I am weak, and helpless, and poor in body but I am rich in spirit because I am continually at the feet of Christ Himself worshiping and adoring and loving Him. My soul is revived daily and it doesn't matter what happens to my body any more. To live is Christ, to die is gain. I am happy to live with whatever befalls me, not in a fatalistic way, but simply because I love God so much I want only His will and not mine for my life. Is there more suffering and pain down the road? "Let this cup pass from me, O Lord" as Christ prayed, but He also said, "Not my will but Thy will" to His Father. And so it is with me and my heavenly Father. Every day I ask to be granted the strength and grace to accept His will, and to die to self. When we no longer live for ourselves then we are truly set free to live lives of freedom, and nothing can hurt our souls no matter what happens to our bodies.

If I love Christ and am His disciple then I can expect to suffer in life just as He did. It is the only way to truly allow my soul to grow. It's a strange truth, but the pain that my body naturally runs from is the only thing that is allowing my soul to grow more deeply in love with God and I look forward to the day when I shall be freed from this mortal casing that holds me, when my soul shall be set free to stand before God and dwell in His presence forever where no pain shall touch me ever again and no suffering shall reach out to me with cold fingers to choke the very joy of life from me. I shall dwell in the house of my God forever, and rest in eternity. How welcome will that eternal rest be some day. I am not afraid to die.

But before that time comes I must battle. Yes, everyday is a battle. Some days when the Crohn's flares it's a battle just to get out of bed because everything hurts, but always, no matter how my body feels, whether I am well or not, it's a battle for my very soul. Bitterness lurks like a hungry wolf desperate for a meal, frustration and anger threaten to engulf me in flames, self pity claws at me with sharp talons tearing me to shreds, sadness and sorrow try to steal away any joy I have... battles must be waged everyday so I can be what I truly am. And what am I?

I went away for a 30 day silent retreat in Sydney to find out who I really am. And I discovered that I am so deeply loved by God, fearfully and awesomely made, precious in His sight, a delight to God, and I have many gifts and talents given by Him. I thank Him everyday for His love, for all the gifts He has given me, but I remember to love the Giver more than the gifts. Even if I was to be given nothing more in my life I would still love God. And yet, God Himself was both Giver and Gift, when Christ died on the cross for me. Everyday I gaze upon Him on the cross, and everyday I give all my burdens to Him because He truly cares for me and wants to help me bear them. What greater gift can anyone give than to help another bear their burdens with such humility and gentleness as Christ offers? All anger and frustration, sadness and sorrow melt away in His presence. Truly, my soul has found its home in God.

My heart is revived by my time spent with Him, my soul enriched with a peace that is beyond anything anyone can offer me, my love for others, especially those in pain and those who suffer in this life, has deepened, and I feel alive on the inside...my body just needs to keep up. There was a time when my body dictated how I felt and  what I did, but now I look to my soul to direct me. I am the temple of the living God, and His Holy Spirit lives in me. Let my soul, in communion with God, speak to me and I will listen, and I will know when I am walking in His will or not. His is the still, small voice that I must wait and listen for, in solitude and in prayer, which in essence is a conversation with my Maker. On those days when I have not had that time with Him, I am frazzled, irritable, grouchy and just not at all good company. I know how badly my soul needs that conversation and time alone in quietness. I miss it so badly when I fail to meet with Him, and I walk away renewed and refreshed when I have communed with my Maker. It is a part of my life I cannot live without.

I don't know how I managed over the past 17 years that I have been ill. I think I turned to God many times when I was unwell, I often forgot God when I was better, and I even tottered on the edge of despair altogether and unbelief threatened to overwhelm me at times as I struggled to make sense of my life. Instead of seeking God to sustain me I relied a lot on others for help. But no one can help another soul grow. That is only God's work. Friends and family can help, they can try to ease your pain, but they suffer too when a loved one is ill... what could be better than going to the very source of life itself? I don't have all the answers but I am listening, and waiting and living for the moments when God's voice speaks to me of His great love for me. At every moment in time He is speaking to me, from nature, from my own heart, from those loved ones He has given to me as beautiful gifts. May the eyes of my soul be always watching for the gifts of His presence in my life, and the ears of my soul always listening for the softly whispered truths of His love for me. May my heart cherish every truth spoken from His word, and may my soul draw strength from His love for me. Truly nothing can separate us from the love of God.

At my retreat in Sydney, the key principle underlying the Spiritual Exercises of St Ignatius which I undertook over 30 days was this : "To want and choose only that which better leads to a deepening of God's life in me". I pray this everyday, so I can make wise choices, so my soul can stay alive and can keep growing, and so that I can live life fully, loving both God and mankind from a heart touched and changed by the love of God.

That's what works for me. Is religion or God a crutch for the weak, the poor, for those who suffer? It is often the invincible young who think so, on the cusp of adulthood, full of energy and vitality, never having suffered much in life and with no understanding of the difficulties life has in store for all of us. Yes, God is my crutch, in fact He is the very pillar upon which I stand, the cornerstone and foundation of my life. Cut it down and I would fall. It's a bleak, dark and lonely place from which I have been rescued. I do not wish to return there. I admit that I am indeed weak, poor in body and often helpless, and I know pain and suffering. I have lived a fair bit. I know the truth and it has set me free. Life is so much more bearable with Him walking beside me. My soul shall prosper, it is God's promise to me. Come what may and whatever the future holds, I will survive. In fact, I think I'm going to thrive. :) I just need to keep going back to Him everyday for the rest of my life.

Thanks for reading and God bless,


Monday, April 1, 2013

Fine. Absolutely Fine.

When you've lived with chronic illness long enough you get used to telling people in your life to go have fun without you because of various reasons, ranging from "I'm too exhausted to get out of bed!" to "I'm glued to the toilet today!" or my perennial favourite, "You guys go on without me, you'll have more fun!".

And so people do go out and leave you behind, and after awhile it becomes a norm, and no one knows what to do with you if you were to come along anyway... And after many years you find yourself alone on the sidelines watching people come and go on adventures that don't include you, and people don't stop to think of what you might like, and even you don't know what you want out of life any more.

You just don't want others to suffer because of you. You don't want to slow people down on a holiday or ask them to take your feelings into consideration on a trip. You can't do the adrenaline pumped activities, you feel too fragile. You don't have the athletic body required to climb a mountain, battle a river, cycle cross country. You are exhausted beyond belief but push on with a smile, and when it falters no one understands. How can they when deep down in their hearts they truly believe that they'd have had so much more fun without you? And your pain and your meds and your side effects and your dietary restrictions? You're cramping their style, limiting their fun, a constant reminder of someone more needy than needed... You know deep down in your heart you're an obstruction to happiness no matter how fleeting that happiness may be, so you step aside. And you pretend it doesn't hurt, and that you're fine. Absolutely fine.

You want to meander through museums but no one wants to do that with you, it's just too dull. You want to sail on a cruise but that's for old fogeys, no young person with tonnes of energy would choose to do that. You want to stay on a liveaboard ship and snorkel and scuba for a week or just lie and gaze at stars all night but nobody understands your crazy love for the ocean, they'd rather stay on land.

You stop asking if anyone will do anything with you... Nobody really wants to... The kids grow up, family members move in their own directions, everyone has ideas of what they enjoy, and it's rarely what I enjoy any more. You know you feel lonely yet you tell yourself not to, it's just the way life is in a busy world. I look at my youngest son, on a 2 week liquid diet to boost his protein absorption, and I know that I'll be spending many days with him in the years to come. Just the two of us. The Crohnie Club. I understand what he feels, I know some of what's in store for him, I weep because I am sad for him. But he is as cheerful as ever, and he rarely complains.

I know when he's tired and listless and irritable that he's not doing well, I know because I feel the same. I expect far less from him because I know how hard it is... I hope some day he'll understand that I understand, and even if he'll never climb mountains, go white water rafting or cycle cross country he can walk through a museum with me, he can go on a cruise with me, we can both stay on a liveaboard ship and just lie on deck and do nothing. And that would be fine. Absolutely fine.

But some day he too will find his feet and his own way in the world and manage the best he can to be all that he can. Somehow I suspect he'll do a better job of it all than I have. I really do think he'll be fine. Absolutely fine. 

Thanks for reading,


Savaged by Storms

Yesterday, while we were at the movies a storm howled around our house and drenched everything in its path. Winds whipped rain into corridors, water lingered in rooms, our helper scrambled about mopping up little puddles. Life's like that too. You trundle along at speed thinking the weather's nothing noteworthy, when suddenly, while you're busy with something, or maybe nothing in particular, a storm breaks out and you don't know where it came from. You didn't see it coming. It just grabs you, howls it's way around you and inside you and flings you in its wake. You spend hours, days, weeks mopping up puddles... Your tears from the storm that ripped through you. Chronic illness is a storm you never expect that never really dies down. Add to that the other twisters and cyclones of an ordinary life that swirl and unfurl their fury striking at your very heart... And life seems unbearable almost. But bear it one must if not for one's own self then for those who depend upon us. God grant us grace to live through each storm, God may your angels minister in human form. God collect our every tear and soothe our every pain. God, if it be Your will please stop the rain. 
Thanks for reading, 

Thursday, March 7, 2013

Considering Caregivers Amidst the Fears of Chronic Illness

I was looking up articles on "fear" in the context of" chronic illness" and came across a very useful short piece listing 8 fears that people who live with chronic illness may face. It's written from the point of view of helping the caregiver understand what the patient is feeling, while acknowledging that caregivers also suffer. Caregivers, whether they are parents, spouses or children, other family members or friends, have their own feelings and difficulties in dealing with the illness of someone they love and care for, and relationships are often deeply affected by changes in well being. The challenge is to find a way to live and function such that the impact on caregivers is recognized and dealt with, and at the same time continue to give the chronically ill the help they need. It's a tall order. All the same, it must be consciously undertaken so that collateral damage from life with chronic illness can be minimized, and the unfortunate and unexpected intrusion of chronic illness into one life doesn't claim other victims as well.

"Helping Yourself Help Others"
Even as you (the caregiver) are struggling with your own problems and feelings, you may find that the one you are caring for seems moody, withdrawn, depressed, or perhaps - even more unsettling - unnaturally cheerful.  It can help you to cope with your position if you have a better understanding of what your loved one is experiencing.

People facing a chronic illness suffer great emotional turmoil.  The prospect of being sick and a burden to someone else, possible of facing death, can be devastating.

In their book "Taking Charge: Overcoming the Challenges of Long-Term Illness", Irene Pollin, a clinical social worker who specializes in helping chronically ill individuals and their families and Susan K. Golant, co-author of Helping Yourself Help Others, delineate eight fears that people coping with chronic illness usually face.  These are borne out by the respondents to the RCI survey:

1.  The fear of loss of control: Your family members may fear that they have lost control over their life because of their illness.  They may have made plans for their future, which are put into question.  They do not know from one day to the next how they will feel or whether they will ever be able to regain control of their life.

2.  The fear of changed self image:  Sometimes the one who is ill no longer views their self as the same person.  They feel less confident, no longer attractive, physically weaker, and somehow damaged.  Maybe they lost their fertility/virility, their gracefulness, their ability to earn a living or their willingness to believe in God, and see themselves as defective and unlovable.

3.  The fear of dependency:  Once the reality of the illness has settled in and the one you are caring for recognizes that their condition is not going away, they, too, fear their loss of independence.  Hating to show any vulnerability, they may have difficulty accepting outside help, or, giving in to their fears, they may become overly needy and dependent on you.   One of the respondents to the CARE NET study said it was becoming more and more difficult for her to care for her chronically ill daughter because the daughter expected everything to be done for her.

4.  The fear of stigma:   Another of the respondents commented "I share some with friends, but friends 'pull back' due to the illness."  The one you are caring for may become frightened that others will distance themselves from them once they know they are sick, as if illness brought with it some sort of shame.  If they are disfigured in some way or if the illness causes some apparent physical disability - an uneven gait, a drooping lip, they could be afraid that others will point and stare, causing them to withdraw into the confines of home.

5.  The fear of abandonment:  As a natural part of infancy, babies fear that their parents won't be available or loving when they need them.  They cry when parents leave the room.  These feelings stay within us and actually become intensified with an illness.  Even if yours is the most affectionate and giving of families, your ill family member may grow frightened that you will tire of the drudgery that the constant care involves.  This is normal and universal anxiety stems from the disease threatening their personal sense of security.

6.  The fear of expressing anger: When those suffering realize that they have done everything possible, yet can "never" be cured of their disease, they may become intensely angry.  It's easy to see how a chronic condition could give rise to lots of anger.  Anger is a consequence of frustration.  Yet many people are afraid to express anger because they have been taught that this is an unacceptable emotion or because they're afraid of driving others away with their rage.  Or they're afraid of flying out of control.  Anger kept inside can cause depression and a lack of energy.

7.  The fear of isolation:  Physical, social, and emotional isolation can result from a chronic illness.  Ill ones, physically confined, lose the opportunity to socialize with old friends and often find themselves withdrawing from them.  The fear of isolation usually doesn't occur immediately after their diagnosis.  It takes time for ill ones to pull away from society or to recognize that friends, family, acquaintances, and co workers are avoiding them.

8.  The fear of death: Although everyone who is diagnosed with a serious chronic illness fears death, Irene Pollin say that, ironically, death is usually not what they fear the most.  Rather, their greatest fears revolve around how they will live with the illness until they die.

As I read these fears I recognized many of them in myself. Yes, I suffer great emotional turmoil. Yes, I do feel depressed, angry and fearful of many things. These fears seem almost legitimized in those who live with chronic illness, because it's their experience of the illness, it's real to them and their lives are changed by it. I often think of my life before I was diagnosed with Crohn's and I remember how carefree it was. But my thoughts also go often to those I live with, especially to my dear husband whose own needs, fears and frustrations must find a way to be expressed and considered and dealt with along with my own. I often wonder about caregivers who look after those with long term disability and illness. I wonder who cares for the caregivers. I don't think anybody really does. I do think somebody ought to, caregivers need love and support and help too. 

I wonder what the fears of caregivers are, and if the chronically ill can have the grace to accept that their illness affects others and that guilt is not the way to deal with the needs of caregivers. Don't feel guilt stricken that your loved ones suffer because you suffer. Don't make them feel guilty because they may choose to deal with their suffering in ways that takes them away from you. Don't allow guilt to ruin relationships. Find the grace to let your caregivers go, give them space to breathe and live. Learn to cope with chronic illness on your own as far as possible. It might be impossible for some to manage given the extent of their disability, but above all, be kind.  Kind to yourself as a patient, and kind to your caregiver(s) whoever they are. Kindness takes the sting out of so much pain. 

The first step is to recognize and remember that others suffer along with us. It's not all about you. Find the inner strength to deal with your own illness, and bear the burdens of those who care for you too... I'm going to try harder myself. Wish me luck!

Thanks for reading.


Wednesday, February 27, 2013

Fled Facebook For a Fortnight

I decided 2 weeks ago to deactivate my Facebook account and did so rather abruptly. Over the past 2 weeks various friends have looked me up via email, or sms, and a couple found me on a very old Twitter account. Perhaps some visited this blog, wondering why I'd fallen off the face of the planet, or rather severed that umbilical cord to the weirdly wired world...Facebook.

I woke up a fortnight ago and I just felt that I was exhausted. I'm exhausted every day... but on that day it was a deeper, different kind of exhaustion, an exhaustion of the soul. What does it feel like to have a tired soul? I can't put it in words, but I can say that being physically and emotionally tired is a truly weary place to be. Life itself seemed pointless because of the effort it seemed to require.

My bones hurt so badly and I was just recovering from antibiotics that ravaged me, and life seemed so bleak to me. I couldn't speak of it to anyone. There was no one to speak of it to anyway. My dear husband is in a very busy season in his work life with 15 hour work days and is exhausted himself. My children are too young to fully bear my sorrows, and I don't think it's best to burden them too heavily with my own despair. I spent time retreating in my room, emerging when I was able to manage a smile, and curling up in my corner when no one needed me. On days like these I am so glad I don't homeschool any more and the kids go to school for several hours. At least the insanity of school life is to be preferred to Mum's brand of temporary loss of marbles :) And yes, God exists... because my kids are so lovely, He simply must exist. Yes, logic isn't my forte. I know.

I went on to Facebook that last day, and there were my many friends from my school days, from Uni, from my youth days in Malaysia, from my life since I moved to Singapore... but I couldn't say a word to any of them. These are the people I have been communicating with daily for the past 5 years but suddenly even the closest of them seemed distant to me. Even my own family members seemed out of reach though I knew they were right there. I just couldn't speak to another soul except to my husband, and even then it seemed we argued more than we communicated. I read all the usual postings by friends, and looked at photos and cartoons and clever captions, and quotes and reposts of news from around the world, and suddenly it all seemed so superficial to me. I felt no joy at all, as I usually did, connecting with my friends, living for their witty repartee and the verbal sparring and jokes and virtual hugs and love that made me smile on most days. I didn't want any of that any more. I recoiled for some reason, from the milieu of many voices vying for my attention, all trying to say something, and yet saying so little. And I felt that whatever I was to post would be the same. A lot about so little. Nothing of real consequence. Surely I could live without it all. And so I deacitvated my Facebook account. No big drama, just a quiet but quick fleeing from Facebook.

Several people contacted me to say they missed me and to ask if all was well, and suddenly there was a tiny resurgence in my Twitter following... and I hadn't tweeted in over 2 years. It was nice to be missed but I had nothing to say to folks except that all was well with me. But was all well? It wasn't at all. Deep down I felt broken and sorrowful. Morose and melancholy maybe. Can people understand those feelings? I really don't know if many of my friends can. In the past people have told me I must not give in to my melancholy side as if I was in some Jekyll and Hyde battle for my wits. Some might think but not say that it was some kind of spiritual battle in which my soul was up for grabs... my reply is "Can God please try to feed the starving millions on this planet before saving me?"... Not a cynic, just saying that in the larger picture I am of so little consequence, and that's actually okay with me.

But what was happening to me? What precipitated all this emotional turmoil? I'm turning 46 in a few months... is this a mid life crisis? I know I'm perimenopausal... am I psycho too? Have the side effects of my meds finally gone to my brain? In addition to sadness, tears began to flow, perhaps as a natural reaction. I imagined life without me, rather than with me, I felt old and ugly and useless... I think I was depressed. Well and truly depressed. What could I do about my feelings? When could I pin down my husband so we could talk deeply about them? Did I feel this way because I spent hours and hours essentially alone at home and while I once treasured the quiet, I now felt excruciating loneliness?

If I was lonely why didn't I talk to my friends, if not on Facebook, at least on the phone? I just couldn't bring myself to speak to them. I didn't want visitors, I just knew I was bad company. I couldn't bear to hear their stories, their sadness, their pain, their seemingly trivial pursuits, when all I wanted to do was scream, "Shut up! Go away! Leave me alone!". A friend hounded me for lunch, I kept saying next month when I feel better, but she kept insisting. Then she called me and with great reluctance I answered the call. We talked and I tried to explain how I felt but she dismissed my feelings hoping to make me feel better. We ended the call knowing it was the wrong time to talk to me. I dread her next call. Is this a real friendship? I don't know any more. I feel like I'm acting in a B grade movie and I'm so good at playing the nasty grouchy villain of the piece that pretty soon I'll be accepting an Oscar for A grade baddiness. Not.

My friend's dismissal of my feelings made me feel angry and hurt... for years I have dismissed my own feelings. For years others have too. I ask so little of anyone because I don't want to be a burden. I don't want to be demanding. I don't want to avoided because I seem to have my own agenda. So I've lived as if the agendas of every other person I come into contact with has been the most important thing. But that's not been fair to myself. That's shortchanged me. And yes, I count. My feelings actually count. Others have to sit up and listen when I tell them how I feel. I deserve that little bit of respect, surely. And I have to learn to express myself better, not with tears and great emotion and feeling but with the sane voice of someone in control of themselves. Sigh.

At times when the Crohn's overwhelmed me and my guts raged and I had fevers and joint pain and nausea I knew that I was depressed and unable to cope, and for some period of time I did seek help and go on anti-depressants to get me through a really tough patch. I've come to a place now where I won't take them any more. They affect me with their own side effects, but more importantly they rob me of the ability to deal with life as a fully engaged person, even if that involves deep pain, tears and more tears and suffering of the soul. I have to endure all that so I can look myself in the mirror with some measure of intellectual honesty and say I still love myself despite everything I am, I have become, and hope to change...

So I have been wrestling with all my inner demons, as the phrase goes, for the past 2 weeks. Is the wrestling match over? Have I been declared the winner? Am I still vaguely sane, and perhaps a little happier? What is happiness? Do we ever attain it in this life? I'm still wrestling, but with fewer tears. I am telling myself this isn't a war. It's the evolution of me. I cannot remain in the same place in terms of my own personal growth... that's being stunted at the very least and death on the inside at the very worst. I want to grow as a person. I want to embrace change with courage. Happiness is elusive, like that gorgeous butterfly that just flew past my window. There, but only briefly, and the harder you try to catch it the further it seems to fly away. Perhaps happiness is simply "less sadness", I feel happier today then I did last week... perhaps I will feel less sadness next week too...

Today a dear friend emailed to ask me if she'd offended me and why I had apparently blocked her and vanished on Facebook, so I explained that she hadn't offended me and I hadn't blocked anyone and I thought to myself that I really should let my friends know how I am and why I've vanished. And so these are my thoughts. I'm a lot more willing to talk today, and glad to be connecting with friends again, but I think I'll stay off Facebook for awhile longer once I've posted a link to this blog post and left it accessible for a couple of days... Staying "far from the madding crowd" is really a detox of sorts, for the soul. If only because I actually listened to myself for a change. I still love my friends, I hope they'll still love me.

Thanks for reading.


Tuesday, February 12, 2013

Three Years Since Surgery!

I just realised that today is the 3rd anniversary of my big surgery in 2010, after 50 days of starvation on a liquid diet and immense pain. A resection of 40cm of my small intestine and terminal ileum and removal of gall bladder and appendix in the hope that I would go into permanent remission... The Crohn's came back but hey, I'm doing okay. Life is good. I can eat. I lack for nothing. So I'm aging faster than I ought to, so I'm always tired. So I'll never run a marathon and my bones are getting frail. But the kids are getting bigger and sweeter, my hubby still loves me, and I am surrounded by beauty and nature everyday... Life is good. Aims in life 3 years post surgery include 1.Stay on powerful meds to try and avoid surgery again now that I know it hurts like hell when I wake up. 2. Finish my PhD which was almost derailed by pain, hunger, surgery and more pain. 3. Relax and don't take life so seriously. 4. Worry a lot less about the kids, since worrying does nothing except upset me, and that upsets everyone else. 5. Keep calm and carry on, it's not all about me. ♥

Sunday, January 6, 2013

Painting my way through 2013

As the New Year came and went I became rather obsessed with wanting to paint. I did a mother-daughter session last year that was designed to introduce us to acrylics and discovered that I am a hidden, secret artist. Not fantastic, never going to make a living off it, but just enough to feel good about one's self and wonder why my Art teachers never recognized Picasso Pav in the making ;)

I have decided to do a large piece, 30x40 inches of a mosaic I have seen in the Vatican Museums. A basket of flowers, apparently a reproduction of a 2nd century Roman mosaic. I love it, and am dying to paint it... Today I finished the back breaking job of drawing it and transferring it to my canvas. Tomorrow I begin painting. I hope it will turn out decently. I hope I will be able to look at it for years to come and enjoy it, remember the arduously satisfying business of painting it, and the fond memories of my visits to Rome that it should evoke.

Painting is a meditative process of sorts... not entirely, for me because my brain has a hard time shutting down, hence I blog, because writing is also a cathartic process for me. My mind never seems to want to stop and take a rest. Painting, however, forces it to think differently. I must think of colours and tones and shades. It's good exercise for my verbose self to think quietly and internalize for a change. In fact, I find it tires me less than some of my daily activities which involve dealing with people. Painting is therapeutic for me in that way. It's physically tiring, especially on my back and shoulders, but it's emotionally very satisfying.

I love that moment when at the end I can look at a completed piece and say, "Yes, I better stop now, I'm overdoing this!" It's a sense of completion, of finishing a job that I set myself and the sense of accomplishment that comes with it at the end. It keeps me going through a project, it drives me on. The creative process that I have discovered channels my thoughts and instincts in a new way. I am just delighted that despite my illness I can express myself, and that I can still begin something and finish it.

That ability to start small and finish a project can elude a person who lives with chronic illness who struggles with pain or tiredness and may want nothing more than to rest quietly. I enjoy a good, quiet rest but I also enjoy being able to finish something I have begun, and so I keep trying to do little pieces of art from time to time.

I am grateful I am well enough to manage painting. It would be challenging if I was ill in hospital, though we have all read or heard about people who paint without arms even... so I really can't complain about tiredness, really. When I am tired, I rest, but I am drawn back towards finishing... so I can stand back and say I did something no matter how I felt physically, and emotionally. I move from one small step to the next towards completion.

Small steps along the way keep me energized, and encouraged. I look at the art pieces I have finished, and I feel that my life has an extra dimension of meaning... When I am unwell, I feel so useless sometimes, but I tell myself that when I am better I will paint. It gives me something to aim for, a goal to work towards, an extra purpose to my life. Indeed I have so many things to do in life one might think I was over reaching... but this artistic activity is entirely mine. Yes, it's just something I do, for me, at my leisure, and no matter what anyone else thinks of it, I am happy just to know I actually did it. I sign off on it, and it is mine. Forever.

I am excited about beginning painting tomorrow. It will be the biggest painting I have undertaken thus far. That's a scary challenge, but I think I shall enjoy the process. No stress, no strings attached, no approvals needed but mine... and these days my standards are pretty mediocre. Let's just say I'm realistic :)

I think everyone should have something they enjoy doing just for themselves in the quiet moments of their day and that gives them tremendous pleasure. It makes life so much richer. I wish the same for you. May your life have many secret treasures that find you grateful for what you can accomplish, and excited about what life has in store for you. May your life be full of all good things always, may your path lead you to quiet places of contemplation and peace. May you discover something new this year about yourself. Who knows, you might have a secret talent. If I can paint, well, you can do just about anything ;)

Thanks for reading,