peacock door Almost two months ago, I sat by the crashing waves on  Cress Beach in Laguna Beach, California. The hypnotic  rhythm mesmerised me and soothed my soul for the first  time in many moons. I had just watched the sun set and the  horizon seemed endless. My turbulent mind was calmed,  my breathing became deeper and healing, my spirit lifted. I  felt more and more like the real me had resurfaced again  after a long turn of tossing and turning in the seas of life.  My health was the best it has been in years. I was so excited  I could actually move about for large periods of time that I  tended to overdo it. But, I was happy. Genuinely happy.

That lasted about three and a half weeks. Yup. Bummer.  Crash and burn was more like crash and drown. I returned  home to Seattle so happy and within the sum of three  weeks, felt my heart had been ripped apart, my body drawn  and quartered and my spirit slashed and burnt. Friends I trusted with my life – with my heart – ignited the fire of self doubt and fear. There were moments where I felt I was trapped in an old New York apartment building, in the top floor, as it stood burning. The window to the fire escape stairway was sealed shut. There’s no way to get to the front door without major harm. Looking out a small window where I was trapped, recognising the smell, the now almost faint memory of fresh air, oxygen as the whole building is slowly engulfed in the dance of flames and the crackling of its consumption. And there were no sirens in the distance heralding the arrival of fire engines. My parched throat tasted the bitterness of fear.

The authenticity and vulnerability I speak of often seemed to be a cruel joke suddenly. Maybe I was wrong and they were right. Maybe, just maybe, this whole business of being real and authentic about how I feel is actually a weakness, a thing only a fool would find valuable. That was a word I remember calling myself very often in those days after I felt I had been so wrong in my approach to life: fool. A dumb ass fool. A stupid fool. A naive fool. Fool. Fool. Fool. A fool for trusting. A fool for believing in another. A fool for caring. A fool for ‘investing too much in others’, whatever that means. Labels and accusations thrown at me blasted the fragile scaffolding of myself I was rebuilding. The very ones who had helped me initially in its building were now the architects of its demolition.

That was how it felt at the time. I had attempted to reach out for reconciliation only to be rejected outright by more judgment and doors shut in my face. Someone once commented on an internet meme riffing on the saying, when one door closes, another opens. This one advocated that when one door shuts, make sure it stays shut. Her comment was make sure to nail it shut! That may work in some situations.I suppose. I however struggled with that notion. How does that make me authentic to who I am? Even in my bruised spirit state, I could not bring myself to hate those people. I could not. How can I love them and then turn around to despise them? Yes, some space was needed and every time I hear something disparaging they said about me which eventually comes back to me, my carefully mended, Band Aid-ed, urgently stitched up heart breaks a little again. And I retreat. I cower in the shame of being the fool yet again. I question what I did to them that would illicit such animosity. I retreat so I may think it out. And at the end of the day or days, I realise all I did was love and respect them and had hoped they loved and respected me in return.

When I have unusual emotions, I try not to avoid them or numb them. I dive into them to know why I have those emotions. As Dr. Brene Brown says in her book, The Gifts of Imperfection, ‘When we numb the painful emotions, we also numb the positive emotions.’ I full well admit, I did try to run away from some strong emotions I was not at all comfortable with in one of the relationships. I do wear my heart on my sleeve, to the chagrin of some, yet resent myself for it at times. At the same time I also know who I am. I am strong and resilient. I know even though I feel so much pain right now, I will bounce back again as I have done many times in the past.

I am going through an extremely difficult time in my life and transitions are not ever easy. My endocrinologist repeated something I heard after I first arrived in the U.S. when I got married and had an Addison’s Disease crisis. She reminded me that these life altering transitions are extremely stressful on anyone, let alone a person without the physical ability to cope with them! I have questions at times. I expect a discussion as one adult would expect from another. If you are rude, and those who know me well, know how huge a deal that is, I will stand up to you and ask for the reason behind such rudeness. If you try to be evasive and try to blame me for something I did not do, I will of course, defend myself. Needless to say, it was not well received. Maybe I need to work on my delivery!

As with almost everything, there is a lesson. I am still in the process of learning about this one. I clearly do not have all the answers, none of us do. I am learning that although this is truth, there are people who seem to believe they do have answers to everything under the sun, rivaling Solomon himself. Do I still hurt when I think of certain things those friends said or did? Absolutely. But I also am able to laugh at the memory even as my heart feels heavy at the loss of friendship. I just happen to be stubborn and refuse to believe they are mean or bad. No way, not at all. I chose to remember the good, the very good, I saw in them. I chose to remember the good memories that are slowly taking the place of the anger, the hurt, the disappointment and the grief. I chose to believe that one day, we will return to being friends again. In the meantime, I shall go on my way, on my path with gratefulness that I was privileged to know people like the friends I know and knew. I am not one to nail any closed door forever shut. I believe in turning the knob of said door so it opens. Is that not what doors are for?





Categories: Uncategorized


child in ocean



I gaze within

and what I see

is a prophecy spoken

a long time ago

to a child of three

She, a woman now

of forty three

for all pomp and circumstance

none the wiser

none the better

than those words spoken

four decades ago:

You are useless.

[image via rokonelee]

Fifty Shades of Feline

May 7, 2014 1 comment

early sunlight steams
through the shades
my eyes flutter 
at the interruption 
he steps all over me
his feet on my belly
my belly
featherlike stokes 
on my thighs, my feet
i sense whipping lashes
criss-crossing my ankles
his voice was low
anger and annoyance
intermingling, becoming one
as i open my eyes
i meet his unflinching gaze
coldly staring into me
his mouth opens
deep, low, elongated
the hairs on his face
moves as the muscles
contract and release
moving as he mouths




April 22, 2014 1 comment

Amina and Hannah rock it spoken word style! A Muslim and a Jewish girl, together, find more in common than what sets them apart. Bravo! Recorded at the Brave New Voices 2013 Quarter Finals in Washington, D.C., the performers are Amina Iro and Hannah Halpern.

Categories: Uncategorized Tags: , , , ,

April 17, 2014 Leave a comment
those who escape hell
never talk about
and nothing much
bothers them
—  Charles Bukowski
Categories: Uncategorized

The Known Unknown

April 17, 2014 2 comments



Maundy/Holy Thursday. Different thoughts, issues, dilemmas scrummage through this brain of mine. The comforting thought is that even Jesus, Son of Man, battled with vulnerability – “take this cup away from me” – the fear, the anguish, the despair. Then, again I think of those He called friends, those He asked them to keep watch with Him. They failed Him even in that. He knew death approached Him yet chose to sit down to a meal with His friends. He washed their feet. Surrounded by the Roman army, He asked Peter to lay down his sword. Confounding. And this time of the year always reminds me of traditions I grew up with. Easter was more special than Christmas to us Eastern Orthodox Christians. From Wikipedia:

  • In Kerala, a state in south India where Saint Thomas Christians or Nasranis are in high population, this day is observed with great reverence. This day is called as Pesaha, a Malayalam word derived from the Aramaic or Hebrew word for Passover – Pasha or Pesah – commemorating the last supper of Jesus Christ during Passover in Jerusalem. This is also a state wide declared public holiday by the Government of Kerala. The tradition of consuming Pesaha appam or Indariyappam after the church service is observed by the entire Nasrani people till this day. Special long services followed by Holy Qurbana are conducted during thePesaha eve or at mid-night till morning in the Syrian Christian churches. The Saint Thomas Christians or Nasranis are living all over the world including United States. They also celebrate this day as ‘Pesaha Vyazhashchya’ (Maundy Thursday) by having Holy Communion services in the parishes by following the liturgy of the respective denominations from Kerala.

To those of us who deal with issues of health, that Gethsemane night is so familiar. Each ‘close-call’ becomes one too close and leaves you wondering, is the next one ‘the’ one? I may have passed out five hundred times before but what if this one is the one to end it all?  Having been through it five hundred times does not make it less scary. On the ‘good’ days, we wake up so motivated because we actually got to sleep, and feel we can tackle the world. Here we come to get things done, world! Woohoo! Lists written out, plan of action in place. As you get done feeding your pet, and having a bite yourself, the all too familiar pain begins. You barely hear anything because the sound of your heart pounding inside your rib cage drowns out almost everything. You push it away. Ignore it and it won’t be, right?! Within minutes, the pain overwhelms, bores into the very depths of you. You double over the kitchen sink or stumble your way back from the front door. You have no choice but to abandon those fab plans in lieu of finding relief through pain medications, topical balms – something, anything – and literally not moving.

When situations crank up into high gear, as emotions battle with physical pain, your mind goes blank. You see the other person in front of you, talking, moving their hands. You hear bits of it, and there are moments when those few words that do get through your dysfunctioning brain are enough to crush your spirit. You question why even begin to believe in hope? And to what end? Why believe in baby kisses, rainbow colours, love’s touch or the good in humanity? If you are a burden, a constant worry upon another, why doesn’t God, who gave you this cup to drink of, just bring your Judas and end it? Why the prolonging? What is it that we have to prove? We’ve been rendered useless, at times without any respect to the very fact we are still human beings. We may not have won awards; we may not have medals around our necks, we may not have been able to finish our degrees; we no longer are social – not because we do not want to, but the sheer work of getting dressed, looking presentable and walking out that door is enormous effort. Then the effort, strength and focus we need to actually function in the social setting. We may just be a shadow of who we used to be in the past; does that automatically reduce us into a shunned fringe of society? Are we now ‘unproductive members of society’? Have we become moochers? But aren’t we still the work of God?! We are still ones made in His own image – Imago Dei.

Then the days when everything goes hyper-bloatified come upon you: nothing fits, not your clothes, not your wedding ring. Or when you catch a virus and it tail-spins you into a crisis, as your body shuts itself down and you are all alone, with your cat watching your every belabored move, trying to soothe you by licking your tears. You crack open that pill bottle again and triple dose yourself to stop the crisis. And you pray. You beg to get through this. You swear not to complain about anything again. Your legs begin to go numb. Your hands shake involuntarily. You mumble gibberish, saliva dripping down the side of your mouth. In your hallucinated mind, you see Mother Mary reach her hand out to you. Tears flow..’as I walk through the valley of the shadow of death, your rod and your staff, they comfort me.’ What and where are my rod, my staff? Shepherds use them to guide and protect their sheep. I found my staff in the listening ear of a handful of friends; my rod, the friends I can lean on during these times, reaching out to grab me as I sink into the quicksand of fear. Yet, I myself am now hesitant to reach out. In the fourteen years of living in the US, I changed. I have learnt that many say the right words but hope like heck you don’t call them on it! So, I learn to make do. A pot of rice goes a long way. On good days, I make a few dishes to last awhile as I ration them out and freeze some for ease of use during a tough spot. I’ve learnt to recognise when a fainting spell is about to happen and find a safe spot before it hits me, even if it’s sliding down to the floor of the kitchen, with a kitchen towel rolled up under my head. Once the beginnings of an Addison’s crisis rears it’s head, I make sure the emergency syringe and vial is next to me and I alert someone about it, usually my husband. And make sure my Medic Alert bracelet in on.

There is of course, the issue of depression which haunts us all. Unlike terminal illness where, as horrid as it is, you are given a timeline, a gauge of when, how and what, most with chronic, rare illness are not given that luxury. You are in a constant state of guessing.  With Addison’s and Dercum’s Disease, alongside other Rare Diseases, they can’t really tell you much and that uncertainty eventually becomes our undoing. Many suffer not just the trauma of the myriad of ways the illness/es affect them physically but also the shaming they endure in doctors and physicians’ offices where they are usually told to get off their behinds, eat healthy and exercise. No explanation given about why there are lumps we can all feel and why they cause such a searing, burning pain or why our skin looks the way it does, but instead are ridiculed. In fact however, most, if not all, DD-ers cannot exercise because of the lactic acid produced during and after strenuous exercise which in turn, causes more lipoma growth. Those who can, do water exercises. Eventually, we get immobile due to lipomas growing around, on top of and inside muscles, tendons and organs in the body. Pleasurable tasks or activities become a pain, in more ways than one. Once immobile, we depend on charity. Charity of heart and of will. Many get food delivered by services like Meals on Wheels. By this stage, we become known as shut ins. Many shut-ins live alone. The depression caused by the illnesses contribute to family members and friends keeping a distance and sadly, dropping completely out of our lives. Some of us DD-ers do not show any signs of those pesky lipomas/tumors clustering all up and down our lymphatic system and wherever else they so choose to grow. We look ‘normal’. Yet, there are so many times when we suck in the pain, bite our lips as pain sears through a particular spot in our body and to you outsiders, we seem just fine.

Maybe it is our cup to drink of because He who loves us knows the strength that lies within us. He knows how we will find one another, build our own communities amongst those who will completely understand what you say even if what you’ve written is pseudo-legible. It perhaps is our cup to share with others who come after us what we’ve learnt about this illness. To soothe another’s fevered soul, to reassure that we can do this together. How the older ones, like our beloved Grandma Sylvia, who encouraged hundreds around the world just by ‘being’ there in forums. She lies in a hospice now , slowly losing her battle while cards and letters flood her Ohio care center from all over the world, from Australia to the United Kingdom. As we drink of this cup, with each sip, the notion of life – all the knotted, tangled, disjointed but beautiful mess that it is – is slowly understood. It is never the quantity of life, it is indeed in the quality.

I recently heard an uncouth person remark, ‘oh how I wish I too could lounge around all day and not worry about working!’ Really? Feel free to trade places with me, dude. I really would absolutely LOVE to see you handle half the pain I go through, Mr./Miss Wussy-oh-no-I’ve-got-the-flu-imma-gonna-die-crybaby!! If you are an artist, I want to see you produce pieces with constantly shaking fingers and hands that jerk around. Same goes to chefs, writers, musicians. Show me a person who can run while their legs uncontrollably twitch. Show me someone in the tech industry who can code while your head suddenly jerks up, you’re lost for breath and yet, you keep on coding.

Not one of us wished we would be given this cup. But it is ours to partake, ‘no return with receipt by thirty days if unsatisfactory’. There have been, are and will be times, certainly and without a doubt, when we fail. Fail miserably. When our veneer of keeping it together cracks and you see the fugly cry. When we hold on to your hand so tightly, it may break the circulation in your said hand – sorry! Know that we cannot keep it together all the time, we are human. We are scared. When we are gasping for air, fear overtakes our minds and we reach out for another’s touch, a hand to hold on to. You see, it is not the pain that gives us the greatest fear. It is the thought of leaving here, this little patch of land, alone.

[image via http://www.omhksea.org


April 15, 2014 Leave a comment

If the suns rises

must I

The earth beckons

should I

The waters roll

will I

The fires burn

I must


(image via docismo)


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