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.


pav

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. ♥

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,

Pav

"Old of Soul" not "Young At Heart"

I am sometimes amused by friends who tell me that age is all in the mind, and that a person is as old as they think they are, and therefore, one can always remain "young at heart". This is very difficult to do if you live with chronic illness that never goes away.

Living with Crohn's Disease means many things... and one major difference that I live with compared to my friends who are well is the fact that I have difficulty absorbing adequate nutrition, and that impacts me on many levels. I smile when friends tell me that I should get out there and do so much more... I am so tired from battling Crohn's and the inevitable lack of nutrition, especially micro-nutrients like vitamins and minerals, that going out is a bit of a job, and so I only do so when I really have to be somewhere, or when I feel really well.

How will I age and grow old and keep my body in shape so that I can function well into my 70's and 80's? I really don't know. I try to do some exercise, but often times I get so exhausted. When I swim often enough to try and stay in shape, I come down with a viral infection. As the main stay of treatment for Crohn's Disease is medication that suppresses the immune system I am prey to opportunistic infections that have included shingles, ear nerve inflammation, urinary tract infection and upper and lower respiratory tract infections. Some of these infections require antibiotic treatment, and those meds keep me chained to my amenities and I stay home till I recover. 

Nutrition and exercise and restful sleep are key to staying well, and yet it is so hard to get to a place where they are working well for me. My body screams for me to rest, yet sleep doesn't come easily to me. Muscles and bones hurt. I am quickly exhausted. I choose to listen to messages my body sends me, but I am aware that my being sedentary can also lead to other problems down the road. So I must find a middle path somehow.

Aging well is not just a product of the mind. You must also have the physical ability to age well. There are things your body simply cannot do because it simply cannot. There are things you cannot do, no matter how much you might try to convince yourself that you can, or others might tell you that you can. It's hard to accept these limitations, and harder to explain them to others, but one must try.

I watch my dear husband leave home to go running, I watch him come home after running marathons, and I know he is doing what he must to age well. I feel left behind, and so inadequate because I cannot run any more. I once used to run... I ran around a lake in the middle of my Uni campus a few times a week in the cool evenings. I loved the sense that I was free as a bird. I loved pushing myself a little further each time. I was in excellent shape, and it felt good. I felt young at heart and strong, and which one of us who is healthy doesn't feel like the world is their oyster when they're 20?

Now after 15 years of Crohn's and numerous medications and doses of steroids I am out of shape, my weight fluctuates, my clothes don't fit, allergies to hair dyes mean that I have stopped dyeing my hair and I am very grey. Some days I feel ugly and I find myself tearful because I want to do so much but my body won't let me. Can I force myself mentally to do what my body can't physically? I don't think so. I've tried on occasion, only to find myself worse off physically. 

What about the "young at heart" phrase that we all toss about so candidly especially to friends who have turned 40, or 50 or 60 years old and need assurance that it's how we feel on the inside of our decaying bodies that determines how old we really are? Well, many who live with chronic illness will tell you, if they were honest about it, that deep down inside they feel tired and weary. This is not because they are melancholic by nature, or given to being pessimistic about life. It is because nothing drains the life out of you like a disease with no end in sight.

You tell yourself when you're unwell that you'll get better, and that life will be better, that good days will come, and that things will be more manageable, and you need that hope to keep going. But just when you get better and you enjoy a season of wellness, the rug's pulled out from under your feet, and the cycle starts all over again... and again... and again. And even the stoutest, strongest, most valiant of hearts feels despair as time wears on. It's inevitable. A recurring cycle of wellness and illness with no end in sight, coupled with poor nutrition, and possibly poor sleep means that one is always putting out fires and never really planning ahead. Never really thinking about aging gracefully because the disease won't allow you to do so. Never really feeling "young at heart" because you're exhausted all the time, and often there are just too many demands on one's time anyway to really prioritize feeling "young at heart"...whatever that phrase really means. :)

I don't feel "young at heart", I feel "old of soul" these days. I can't help it. I've battled Crohn's for 15 years, I want it to stop, but I know it won't. I want to be free. I feel like a conscripted soldier in some strange battle I don't want to fight, and I can never leave the battle field for long. I think I'm winning and I take refuge, and then I'm called out to battle again, and I think I'm winning, and I rest, and then it's to battle again. My heart knows what is happening, what is to come, and also it knows what I must do. 

I must live in hope. That is what I must do. Hope is the only thing that will not die in this situation. When I am well I overdose on storing up hope in my heart. Maybe then, maybe for a short season, I feel a touch of "young at heart" fluttering in my soul, though when the disease flares again or some part of me fails to work properly the "crash" from hope to despair seems so steep... but I don't linger there for long. I have to pull myself up and keep going.

I keep going because life is beautiful. It has so much that is lovely in it. My husband, our 4 children, our home,  our shared lives together. There is beauty, there is love. That alone is worth so much that I don't allow despair to overcome me. I simply choose to realize and accept that I live with an incurable disease, that I am not aging gracefully, and that I am not "young at heart". I am old before my time, I am "Old of Soul". But that's okay, really.

Accepting one's limitations in life isn't an act of giving up hope, it's a step in loving oneself despite all that continues to happen. Some times I need to remind myself to keep loving me... whatever comes, whatever happens, I promise to love myself. Even the oldest of souls deserves that much :)

Thanks for reading.

Pav

There Is Only One You

Today I thought about what it meant to be me, and I realized that the overwhelming truth of who I am can be expressed in the idea that there is only one me. Perhaps that is for the better! Imagine a squadron or a flock of me... how exhausting it would be for those who love me to find so many of me needing attention, and how exasperating for those who dislike me... oh my!

The truth is there is at any one given point in time and space only one version of any one of us. Yes, truly, There Is Only One You, and Only One Me. No matter where we go, no matter what we do, no matter what we might think of ourselves, there exists only the one version of each of us. I asked myself what that might mean for me, living as I do with illness. 

Illness isn't something that is without variability, in fact many idiopathic illnesses have lives of their own, unraveling over time in the lives of individuals affecting two people with the same illness in very different ways. Two people with very similar backgrounds and lives might find themselves with Crohn's but the illness would not manifest itself in the same way in both their lives. Each individual is already unique in their own special way... add to that a disease that creates extra layers of uniqueness, and the individual is even more different, even more unusual, yet not quite special, as no one really wants to consider that having a disease could make you special. It doesn't really, it just makes you different.

That difference is to be thought of as being something precious, though, because it is a part of who you are. It sets you apart from others, a lot like the other things in your life would. Your experiences in life make you who you are to a large degree, and illness is very much experiential. It makes your life uniquely yours. It is only because we do not see that everyone else is also different in and of themselves that we despise the "different-ness" in ourselves. We imagine that all around us people are perfect and happy, and that we cannot be so because our lives are broken in some way by chronic illness. And yet if we were to sit and talk to these seemingly perfectly happy people we might find that they too have some pain in their lives, maybe not of the body but in their soul. They too may have something that they struggle with everyday of their lives. They also may be trying to keep up the facade of being in control but in all honesty, many of us have facades that we maintain so as to manage life on a daily basis. Who knows what lurks behind anybody's mask? Pain? Hurt? Loneliness? Sadness? Despair? We wonder why people try so hard to keep these masks on, but we know that this is the way of the world. No one can lower their mask and show their true selves to us unless they trust us enough to do so. And sometimes we ourselves do not know if we can take the brutal honesty that the other shows us, neither do we know if we have it in us to respond in an appropriate manner.

And so we all tiptoe around each other, dancing on edge, to a very old tune that dictates our movements. I show you a little bit of who I really am, perhaps you respond in like manner. We meet, two souls, passing by each other in life, exposed for who we really are. Trust is built. And somehow, something is said or done, and trust is broken. Then rebuilt again, then broken once more. And over and over goes this dance. But each time we keep coming back to rebuild the trust because we are driven by our humanity. We know instinctively that it is the right thing to do. We recognize this deep in our souls. We dance this dance back and forth with many people in our lives. The ones who mean a lot to us. The friends who can hurt us because we love them. The ones we cherish and want to keep close in our lives. The ones to whom we say, I know there is only one me, but a greater knowledge and a deeper truth I have found is that There Is Only One You. No matter what shape I am in, no matter what my life with illness may hold, stay in my life. I am more than just myself when I am with you, I am much, much, more. Together, There Will be Only One "Us".

Thanks for reading,

pav

Alone, But Not Quite Alone

Last weekend I met up with a newly formed group of patients and parents of young patients with Crohn's and Colitis. The Crohn's and Colitis Society of Singapore was formed in May 2012, and is slowly growing. I was privileged to meet with folks and listen to their stories and share my own. We also had a lovely session of Art Therapy which was fun and enlightening.

As always, meeting with other patients reminds me that I am not alone in my journey, and neither are these patients that I met. We are journeying together, yet we are essentially alone to some extent. The nature of both Crohn's and Colitis is such that as idiopathic diseases they practically have minds of their own. They manifest differently in different individuals and the way the disease progresses in me will differ from another patient's experience. What works for me may not work for them. Medications that helped me may worsen someone else's condition, or not, but that is something nobody can predict. In essence, therefore, my experience, while useful in helping others understand what they go through is always simply that - My Experience. It can never become someone else's neither can I take on the experiences of others as my own.

Does that make the sharing of experiences useless? No, it doesn't. It is in fact a very useful endeavour. Useful because newly diagnosed patients can find hope in those who are doing well and living life as fully as possible. Useful because those of us who have mild to moderate disease can find reason to be thankful that we are spared the severity of disease some others face. Useful because parents whose children have disease can see that patients can be happy, and live life, hold a job, get married, have children... in short, live their lives There is hope, and hope is so important to keeping going, especially when things are difficult.

For this reason I keep going back to meetings of patients whether in organized formal groups or small settings or informal tea sessions in a cafe. It is not because I feel I desperately need to connect with other patients... for some reason, perhaps because I have been ill for 15 years, I have reached a state where I do not desperately need assurance that all will be well, and I have accepted the disease for what it is and my life goes on regardless. I meet up with patients because I sense there are many out there who need assurance. There are many out there who feel alone. There are many for whom this loneliness is overwhelming, and frighteningly so.

It no longer overwhelms me, so perhaps I can help others who are lonely and afraid of that loneliness. I know deep down inside my soul that I am essentially alone in my journey. On some intrinsically deep level I understand that no one can fully enter into my pain or my sufferings or my mind or my heart as I journey with Crohn's. I know my husband cannot fully understand, neither can my children, my mother or my siblings. No one can. But that doesn't leave me despairing. It's just a fact of life. Yes, I am alone, but I know I am not quite alone. Because other patients who suffer endure experiences that approximate mine. Sure they're not the exact same experiences but they are similar enough to enable them to understand, and that understanding is what binds us together in mutual support.

So when one young man shared about a perianal fistula, I remembered my own surgery for one. When two young men spoke of going on liquid diets for 2-3 months I remembered going without food for weeks on end too. When someone shared about surgery I remembered my own experience. Tears filled my eyes... I knew what he had experienced. When parents spoke of their children going without food and drinking Modulen to go into remission from Crohn's I knew exactly what they meant. I knew the tears they must have shed, because I too shed many. I knew the joy they must have felt when their child was declared well and able to eat, because I too had rejoiced with my son. I know the dread and fear they hold unspoken in their hearts that the disease will return because I too live with that fear.

It is this ability to empathize that is born out of our sufferings that keeps me going to support group encounters. If another lonely soul knows someone understands then that is enough. The meeting of mutually suffering souls happens in such moments, and is beautiful. In fact I sometimes think there is something divine in it. I don't know why. Perhaps because the meeting is one of souls, and that always has a touch of the divine about it. That point in time when you look into someone's eyes, and you know that they know that you understand, and that they are grateful you do... that moment is magical, at least it is for me. Hopefully in time patients who feel afraid to be alone will also come to a place of peace and a deeper understanding of their own journey, to a place of acceptance that while they are alone on some level, they are not fully alone.

I am grateful I met some lovely people who are reaching out to others with Crohn's and Colitis. I am grateful that in the meeting of hands of greeting and the exchange of words of introduction, in the process of sharing and doing art therapy together, some meeting of souls occurred, at least for me. Kindred spirits, mutually suffering souls, call it what you may. I am alone, but not quite alone, and that gives me hope.

Thanks for reading!

Pavitar
ps If you would like more information about the Crohn's and Colitis Society of Singapore do email me. I'd be happy to put you in touch with the folks that run it.

For My Son Sach on His 15th Birthday

My Dearest Son Sach,

You're 15 years old today, and I am so happy to see you growing up and becoming a truly lovely young man. Of all the many, many good things I have in my life, I count my children as my greatest blessings.  They are a gift to me from God. I sometimes wonder what I ever did in my life to deserve such lovely gifts, but then I remember that gifts aren't earned, they are given freely, and for some reason God saw fit to give you to me.

What a wonderful gift you are to me. I am so grateful for your kindly ways and loving heart. I know it isn't easy being a teenager, and some days you feel like you really want to be left alone and the world encroaches into your space and everything is annoying (oh wait, that's how I feel!!) but thank you for the kindness you show me and everyone else at home with your patience and understanding. It is very much appreciated. You have a way about you that naturally draws people to you. While you may not perceive yourself to be a people person, you have a talent for working well with others and helping those who need assistance. I see that in you all the time.

When you were very young you were always trying to make your voice heard. It seemed even then that your older brother spoke for you and so you eventually became quite comfortable being fairly quiet. It was only when you had something truly important to say that you spoke up, and people listened because you made sense. I hope that you will continue to find your voice and make your opinions heard over all the noise that exists around you. Certainly our home can be a circus with all four of you speaking up, and often I notice that you stay quiet. Still waters run deep... I know that is true with you. Your mind is always busy working and I know you have ideas and opinions on many things. Speak up, I love hearing you share your ideas. They are a window into your soul, and I know deep inside you is a fascinating logical thinker who is a very intelligent person and for whom much of the noise around him is rather pointless and immature. Someday we will all grow up together, I promise you :)

I look back at your infancy and early childhood and I remember that those were difficult times for me trying to manage two young boys and failing health at the same time. It was when you were very young that I was finally diagnosed with Crohn's after 3 years of symptoms. I remember how tired I was and how little energy I had and yet I wanted to do so much with my two little boys and I always felt that somehow I wasn't giving you enough time and attention. I think all mothers who have more than one child feel this way. I look back and sometimes I wish things had been different with my health and I had done so much more for you and with you.

I don't know why illness came into my life and robbed me of the best years of my life, but I do know that even though I was unwell, and had many ups and downs, at the end of the day it was always a joy having you and your siblings in my life. I felt guilt ridden then, and to some extent I still do now.  But illness is out of my control, and no one can predict how things will unfold in the future, and so I have learnt to be more accepting of the way things are, and to be more forgiving of my own failings.

I look at you now and I am amazed at the person you are and you are becoming over time, and I know that God has been at work in all our lives. My own weakness has been a testament to His loving kindness and care in our lives. I am grateful that while on many occasions I was in hospital or just resting at home your father was there, and with his love and guidance also you have grown up to be a sweet and loving person. It gives me great comfort to know that your life thus far, and how you grow further, is not entirely dependent on me. I am relieved that despite my limitations you are doing well.

No matter where you go in life, no matter what you do, no matter who or what you become, I will always love you. You are mine, a gift from God and yet you are not mine to hold on to forever. I must let you go to find your own way in life. Always remember that who you are is enough. You do not need to be as sociable as your older brother or as chatty as your younger sister, who you are is who you are. And you are wonderful. Within you lies a deep thinking person who will bloom in his own time and make his own mark on this world. Follow your own path, make your own way in life. I expect nothing more nor less from you.

Do stay loving and patient and kind, for these are the hallmarks of a real man. And don't forget how loved you are, and how much joy you have brought me over the past 15 years that I have had the privilege to be your mother. I look forward to continuing on our journey together, and come what may, I will always be here for you. I love you, Sach. Always have, always will.

With much love and affection,
Mum

Sharing Joys, Sharing Sorrows

Living through 16 years of symptoms and almost 13 years of being diagnosed with Crohn's I have come to treasure the true friends I have that have journeyed with me along the way. There are few true friends in my life, and that is how it should be. I am not saddened by the fact that many do not know how to journey with me, or find my life too messy and full of upheaval and too much drama for their liking. I am so happy that I have my friends who do seem to have learnt to journey by my side even as I have learnt to journey, and for those who have stood by me and helped me keep hope alive in my heart. These are the angels of God, sent in the likeness of man, who come to me in my darkest hour, and shine the light of their love into my life. Those who somehow know when to say or do the right thing, when not to speak or do, and simply be, and when to leave me alone... even if not completely knowing, they are the ones who are willing to be wrong and swallow their own hurt and pride should they be mistaken in their dealings with me... they must be angels, or at the very least angelic souls in mortal vessels.

These are the people who are happy being themselves and so can be so much more for others. The kind of person who is secure in the knowledge of who they are, and what they can be, should they step out beyond themselves and be something more to someone else. These are the ones who share your joys, and also share in your sorrows. They are happy for the small things you accomplish in your life...like managing a liquid only diet for as long as necessary without falling off the wagon, for example. They are happy for the bigger things you accomplish in your life, like working on your long term goals, or learning to paint, or play the cello. They are happy for the huge, most meaningful accomplishment of all... raising 4 children despite chronic illness, though time will tell how good a job that's been. They are happy your family is happy, and doing well, they are genuinely glad for you and even if they are lacking in their own lives, even if there is something missing in their hearts, they begrudge you not your joys. This is a true friend. This is the person you hold close to your heart and say, "Thank you, thank you for your generosity of heart in loving me". 

This is the friend who, because I know he or she can hold my joys within their heart without heartbreak... this is the same person with whom I share my deepest sorrows. This is the same person who is deserving of that privilege, and yes, it is indeed a privilege, to enter into the sufferings of another. It is no light thing to have someone open up their hearts to you or pour out their tears before you as they share their difficulties, in fact, it can even be a burden to some. The true friend, the one who sticks by you no matter what, may view it as burdensome, but carries the weight of it anyway, so as to lighten your own load. 

Not all people will share in your joys, and certainly not all will share in your sorrows. Sadly, there are some people who cannot share in your joys but will happily rejoice in your sorrows, for their hearts find it easier to do so. Do not share with them the hardships or pains you face, for they will feed on your sorrows only to enrich their dislike or hatred of you. These are not friends at all. They are not quite enemies, either, they exist in a state of limbo. Perhaps some day they will find it in their hearts to be a true friend... until then they are best left alone. The knowledge that not everyone means us well in life is painful, even heartbreaking, but it is very much a part of growing up, and it's never too late to grow up, even at 45. This truth has led me to cherish even more the true friends I have who rejoice with me in my times of gladness, and commiserate with me when I am down. Perhaps chronic illness has been useful in that it has helped me sieve out my true friends. Certainly, because of the never ending constancy of chronic illness in my life it has become imperative to me to seek out my true friends, as their genuine love and care is precisely what is needed rather that the stress, despair, and heartbreak that those who cannot share in my happiness but rejoice in my sorrows bring with them.

Someday, when my true friend needs a listening ear, and someone to help lessen the load, I too will listen, cry alongside them, say a prayer for them, do something kind for them, whatever it takes to come to that place where the message is sent to say, "I love you, my friend. I have shared in your joys, I share also in your sorrows. You are not alone". I hope that I too can be a friend who shares in both the joys and sorrows that all of us encounter in life. There is no escape. Not one of us is to be spared. Our joys are easy for us to endure, in fact they are welcome no matter what they may be. It is the sorrows that take us by surprise, that assail us when we least expect them, that offend us by their very temerity and intrusion into our lives, that force us time and time again to reassess the priorities in our lives, to rediscover who we really are, to decide who we want to be... life with chronic illness is a deep, deep sorrow that never ends. 

It eats away at the soul, it saddens the heart, it embitters the spirit, it kills you slowly on the inside... if you let it. One must not let it. One must fight it everyday. One must surround one's self with people who will help in this battle. Find the true friends in your life. They aren't so hard to find, really. They are the ones who genuinely share in your joys. They have the largeness of spirit to bear your anguish and grief and sorrows when that time comes. Cherish them always. Seek them out often, Love them deeply. And yes, share in their joys, and in their sorrows also. Relish the sweetness of friendship that is true. It is the very love of God made real in our lives.

Thanks for reading,

Pav

"Mea Culpa" : Through My Own Fault.

I can hear again. Fully, in both ears. Last week I wrote about how I lost my hearing partially in one ear overnight. Today I am grateful to be able to write that I have regained it. The doctor said today that it is uncommon to find such complete restoration, and that it was good I went to see him so quickly. I am thankful the triple therapy of steroids, antibiotics and antivirals worked. I am so relieved.

I am relieved for a few reasons. Of course, it's lovely to have complete hearing. I will never take that for granted again. But also, I am relieved that I am done with the rather intense triple meds regime for a week. They helped, but they caused a lot of other problems for me. I am still reeling from some of these. Steroids and I have a history already with the Crohn's and I had just weaned off a few months of prednisone. I knew I had no choice as I was put on 40 mgs for 3 days, then 30 mgs for 3 days, and then 20 mgs for 2 days and then zero by the ENT doctor. Soon I could feel my bones hurting, I could feel myself becoming very agitated, I was absolutely ravenous, and bloated and my heart raced, and I found it hard to sleep. The day I had zero steroids I completely fell apart. I couldn't stop crying. I cried for hours. I was upset. Possibly even beyond upset. I hated my life, I wished it was over. I had fought bitterly with my noisy, loud, saxophone playing husband a few days before and I plunged into a state beyond despair.

I struggled to tell myself that I wasn't myself. I was on very powerful meds that altered many of the ways I felt and that must have had an effect on how I dealt with the world. Surely I wasn't some kind of Jekyll and Hyde or some bipolar beast who could fall apart so spectacularly and then appear so sane so soon after. But that's what began to happen to me on these meds. In addition to steroids I was on Klacid and Acyclovir, all in order to quieten nerve inflammation and restore hearing. I was desperate to do what I could to help myself, so I followed the doctor's orders. I took my meds as best as I could, even having the Acyclovir 5 times a day, as late as 1am in the morning. I did what I could, but at the same time I was slipping away into something horrible and terrible.

I got upset about noise, especially loud saxophone playing and I argued, and because I was unwell I felt I was right to want some peace and quiet, and to have my feelings understood. Because I stood on the edge of the precipice of possible deafness I deserved to be listened to and to be given space and time to heal and I felt entitled to that because I was the one who had sustained nerve damage. Not you. Me. Me. Me.

I put myself first. And as I did that I slid so far down that slippery slope that I might have drowned in the quicksand and quagmire of despair that grabbed my ankles and refused to let me go... except that I spoke to  a friend, and finally let everything come out. It all came flooding out of my soul. Not only was it cathartic, it was also very necessary so I could make amends, break free from old patterns of behaviour and learn to cope again with illness both chronic and acute, hate myself so much less and love myself all the more and at the same time seek to love others more purely. What a tall order! But life is full of these moments when light shines in on our darkness, and we see what we really are, and we know we have reached a place where action is needed and if we do not act we miss a key place and point in our lives. I am so glad I let the light in. It was painful, but necessary, as many pains are in life.

No one else can walk my path, no matter how hard they try. No one else can enter into my heart and mind and know what I feel. The Divine can, but I speak of those made in His image, and yet very much nothing like Him. Mere mortal beings. My husband cannot fully comprehend, neither can my children. They can try to empathise and sympathise, if at all, but beyond that there is nothing more. I cannot expect them to understand, they just do not have the capacity. While that is heartbreaking, it also shifts the responsibility of managing a chronic illness well almost entirely onto my shoulders. 

I must live with this knowledge that I journey alone in the innermost deepest recesses of my heart. I must not be afraid. I must not feel unloved. I must not give up. All of us journey alone. Somewhere along the way we meet those who comprehend, and we move along, and meet others again, and move along as the tides of time push us on our way. That's okay. That's life. That's sufficient for my soul. I will not and must no longer expect those nearest and dearest to me to know what I need, to give me what I perceive to be my right... therein lies the death knell of love. I cannot and will not let love die in my heart.

My soul was laid bare in a dark hour, and it showed me how little I really know of my own self. I will learn. I will change. I will enlarge my heart and life and I will abdicate the throne of my heart. Not I, God, but Thee reign. Teach me to love, for love's sake, not mine.

Today I know my hearing is restored. I also know my soul is healed. It’s an ongoing process, one that requires that I revisit these key moments and lessons, even if I feel it is unfair, or burdensome to a chronically ill person. There is hope. 

Thanks for reading,

Pav

Ps. Almost a year after this, in May 2013, I broke my left ankle, and was in a wheelchair, unable to walk post surgery. My marriage ended after an argument about a cup of tea which I needed help getting. I think this post reflects one person’s attempt to bridge a gap with very little reciprocity from the other. “Mea culpa” was me acknowledging my struggles, and my trying to make things work. There was never an acknowledgement of difficulties or a conversation in which we spoke openly of our struggles. I was anxious, the other avoidant. And so love died in one heart while mine tried to keep it alive, until eventually, it found no need to any longer. Those who do not understand cannot empathise and they barely sympathise. I should have known better than to ask anything of them. If I cannot walk to make my own cup of tea, I’m happy to go without. :) 

BEYOND MY BODY. A Poem

BEYOND MY BODY


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


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


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


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


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


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


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


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


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


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


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


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


Pavitar Kaur Gill
31st May 2012