October 22, 2014 Leave a comment

if I don’t understand it
should I walk away?
if I fail to understand it
should I try harder?
how many times do I try
how long do I keep trying?
maybe I was not meant to
perhaps I was, am, weak
flawed, broken
no rights, all wrongs
a fool
more a pawn
in the chess game
never learnt.
the promising light
at the end
of the tunnel
was a reflection
of someone else’s

Help me be brave
my soul flits

help me be brave
strength, o Soul!
help me be brave.

Exit Stage Left

October 21, 2014 7 comments

“All the world’s a stage,
And all the men and women merely players;
They have their exits and their entrances,
And one man in his time plays many parts​.”

That Shakespearean quote has been flitting through my mind every so often lately. So many thoughts, some brought on by way of someone else via email, text or a Facebook message. Others, word association, maybe? What does one do when life presents an exit from one’s current stage while not knowing when your character is needed again? Is there a reprisal of your role? Will there be? A new beginning, a new character perhaps? There’s travel soon? What happens then? The anxiety, even fear sometimes is overwhelming. And I never used to be easily overwhelmed. It was one thing I never realised about myself in time. In time to savour and relish that it was indeed a strength of character. See that’s the thing about being a chronically ill person. You never quite know what you will be like, feel like, on any given day. You try your damnest to be ‘normal’ only to pay a cost no one else would see behind your closed doors, maybe for a day but usually several. The fear of making a fool of yourself in polite company. The anxiety of being capable of holding a conversation, to follow, to participate in. What if my words come out wrong? Or worse, what if they weren’t meant to come out?!

Being laid up in bed for a few days has made me wonder, ponder and contemplate on much lately. Sometimes life seems to present you with a plethora of choices that aren’t so clear. Nothing is so neat and tidy as you wish it would be. Nothing defined or explained. No instruction manual. How do you find clarity? My buddy and fellow Dercum’s Disease patient Terri and I commiserated over the women we used to be before our diagnosis. And how no one seems to get what that ‘exit’ from our lives means to us or does to us. How it baffles us at times. How it destroys us on the inside to be treated like idiots. Granted, we now look at the world through different eyes. We’ve had a taste of death. We are surrounded by it in our small community of fellow patients. One day you are laughing over something silly on Facebook and then in a day or two, you hear that person has passed on. Rushed to the hospital where of course, they could do nothing. So, yes. We tend to place different values on things. We may even value something others may scoff at. We may seem the fools in this play of life. We see beyond what you and others see. We do not want to be clingy. We just want to enjoy your company for as long as we can because those memories made together with you will be what carries her and I, and the rest of us, through our dark days of debilitating pain. Because affection and love truly are the balms that heal. The very last thing we want to be is a burden in any way to any one.

When we post on Facebook the WHO article listing Dercum’s as the second most painful illness in the world, we’re not asking for your pity. We are asking you to understand. To please not judge us as lazy, incompetent, flaky or stupid. I once explained to Brett that when that particular wave of pain begins – we call them flares – it is like our skin is being set on fire. It burns through into our bone. As it happens, we hear no conversation, we see nothing and we barely breathe because nothing else seems to exist except the pain. Our brain becomes numb. Our speech slurred. Our motor skills severely impaired. So we medicate to help ease that pain. Unfortunately, most of the medications for pain at this level leaves you a little loopy. What are we to do? What are our spouses and loved ones to do? We shuffle along, trying as much as we can, as hard as we can, for as long as we can, to follow you along this journey of life. Sometimes we falter and fall, sometimes badly, and yes, it will inconvenience you. It will rob you of social time with friends. It may require you to leave work early to rush to our side. But please know, we know this. We see this. And by God, we so appreciate this! All we ask is that you don’t eventually resent us for it. But remember us pre-diagnosis. Who we really are. Not who our illness or illnesses have made us become. Because then, you say to us we have already exited the stage. We are nothing but some inanimate prop.

There may be times when life’s script requires us to leave the stage. Our time will have come. Us leaving would be made so much easier knowing you enjoyed being on that stage with us, saying our lines, laughing at the comedy, crying at the tragedy, dancing around ill conceived trees and singing our hearts out albeit out of tune. Who cares! We were not alone on that stage trying to run a show. We were together! That, in the end, is what matters most. That we are a part of your lives too as you are ours. Know that without you, the show would not have gone on.


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

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