"Mad about Tana"...my first time in Madagascar (2009)

8th August 2009

I woke up at 10: 45 pm having missed Amal to go out for dinner with her friends at 8:00 pm. This is really unfortunate but I am sure my body will be better for it tomorrow.  From the suitcase and clothes on her bed, ready to pack for  her trip tomorrow, I can tell that she must have been home for a while and I had slept through it.  I wandered to the kitchen fully dressed, with a silk scarf, care of my dear ex-boss Ying, choking my neck in hopes that it might block some of the freezing cold drafts piercing my body.  I  don’t think anywhere in Africa should ever get this cold and if it does houses as big and modern as this one, should have heating!  But so be it that part of my adventure is to freeze my tush off and find small joys to warm it up.  Inside the kitchen cupboards I find a mess, a mix of open spice packets, stained and spoiled bottles of soya sauce and herbs that look like they have been there since the last century.  Some boxes are ripped, others smashed, and it all looks so old that the dry goods must be stale.  Ah but low and behold what do I find: instant noodle, hooray! And my heart is filled with nostalgia for my beloved Miss Choi.   So I make my soup and a peppermint tea (because I have not seen any bottled water in the house and I am sure to become dehydrated if I do not drink something) and make my way back to my bedroom where I think it will be so sad and pathetic to eat on my bed, in my freezing cold room huddled, beside the gas burning heater which can only be on for about 10 minutes for fear of gassing oneself.  Ah but I find another curious surprise in the living room: two burnt logs in the fireplace with red underbellies and a dry piece of wood on the floor ready to put my campfire skills (thanks dad!) to the test.  And to my most pleasant surprise and giddy excitement, all it took was a soft huff and puff to set it aflame - ta da! “Take that Meryll Streep” survival queen in Out of Africa.  So I wrote to you this evening at 11:00pm listening to Brazilian beauty, Vanessa de Mata, sitting right in front of my fire, bundled up in 3 shirts, 2 pairs of socks (including the pink fuzzy ones from Marks and Sparks) and Ying's silk scarf, enjoying every sip of my steaming instant noodle soup and hot peppermint tea.
   

Before I share my first observations of this strange and intriguing place, which takes some time to pronounce with it’s 6 syllable tongue twisting name, let me tell you about my first knight-in-shining-amour-from-the-Asian-African-island encounter.  The step was very high and steep; there is no handrail and the cold had cramped my body into such a state that I threw my bags up the 4 stairs to the patio and took a deep breathe, praying that Charlie would be able to hold my weight.  But before I could take the risk of falling over, a voice called to me in French “Arrete! Arrete!”. (Aside: Yes the official language here is French which yours truly has not spoken in more than 10 years so you can imagine some of the mutilated crap that comes out of my mouth as I make desperate attempts to converse with the overly smiling friendly locals. And too often I realize, oops that was Mandarin or I must have made it up) Back to my story...The man calling behind me was my newly acquainted (and Amal trusted) taxi driver who could see I was having much difficulty.  Typical me yelped (yes in retrospect I yelped like a pathetic dog wanting to be let into the house out of the rain), “Non non, c’est bom, pas de problem monsieur” but before I knew it this big bulky man, who had just driven me home in a dilapidating, rusting clunker of a car, which is to be my only mode of transport -a.k.a. my ‘chariot’ - for the next 6 weeks and he the driver of course, had jumped out of his car and leaped over to offer his chocolate leather skinned hand to help me up the stairs, across the entrance patio and to the second staircase (which I only put up with because of it has a handrail).  Safely inside the house, relieved to have made it in one piece with no unfortunate tale of a broken wrist or twisted ankle to have to write home about, I sighed heavily.  Do you think that this kind, friendly man has any idea how much I appreciate his act of compassion and kindness?  To him, and maybe even to you, this small deed is not worth thinking about twice, but to my wobbly-self it has given me an enormous sense of security and gratitude for the gesture of a not-so stranger in this very foreign place.

The fire is going down.  Another soft huff and puff and victory prevails as a small flame sneaks out from behind my masterpiece red-bellied log. Oh boy, it just popped loudly. “whoa, easy there”! Oh shit, the flame just died. So much for my Out of Africa moment. 

An-ta-na-na-rivo, is the six-syllable tongue twisting name of the city, the capital of Madagascar, where I will spend the next six weeks, mostly in the office desperately trying to fulfill the ridiculously ambitious to-do list assigned today by Mr. Bruno Maes, the badly dressed (today he donned a gino-style cream suit, black shirt and halloween coloured tie), gelled haired, rico-suave, strong French accented UNICEF Representative, a.k.a. dude who is going to review my outputs and decide whether or not to sign my paycheck - mental check to self ‘be nice, nod in agreement, (don’t roll your eyes, laugh or sigh), take notes, shut up and smile!  

Tana, as this place is also know is like no other I have ever seen before, not even in the moves. At first sight the poor and under-developed setting made my stroll in Paris the morning before seem quite self-indulgent. Main roads are paved and most are without any potholes but side streets are uneven broken stones. Streets are narrow and as you enter the city form the airport it becomes hilly. Sidewalks are narrow and broken. Stalls and bombed-out looking stops selling everything from raw meat to fried foods, soda and smokes to metal gadgets line both sides of the road. People here are small with dark leathered skin with varied features, some which resemble the Indigenous people of Ecuador and the Andean region, other Indonesian and some dark like from the African continent but not from one country in particular. In general people look sad and worried, which does not surprise me considering how damn cold it is but this exterior only stays on their face until you greet them "bonjour" and all of a sudden like a sunrise, they share a big bright smile. What incredibly friendly people the Malagasy are, soft-spoken, polite, sometimes timid and inquisitive. Not sure where to place my ethnic origins, dark hair and light eyes, they stare at me inquisitively. I have yet to see a local with light eyes so maybe I am just a novelty. Their clothes look worn and wolly but no heavy enough to block out the biting cold. Wool hates and colorful sweaters or spring jackets are work by most. It is poor here, very poor. Like in parts of Johannesburg, people huddle in groups on street corners maybe waiting for a small mini-van, which in Angola are called Kandunhueros but without the blaring tropical music, usually Kizomba or Kandungo. Groups of young men everywhere seem to be busy either fixing something, smoking, playing a game or just hanging out. It is strange how clean it is. There is no garbage on the streets, rather piles of swept up dust. Ah and what I love most is that the earth, the soil, is red. Ah yes, I am back in beloved Africa!  

10th August 2009

One would think that coming to one of the poorest countries in the world would be a dire experience but, on the contrary, this place is rich is more things than we would ever imagine. I am told that in the south there the mountains end in rising sand dunes and mark a desert as beautiful as Namibia, one of my first African adventures. Apparently the northeast coast is tickled with the Indian Ocean’s aqua blue sparkle and cloud white sand. Here in cold Tana, I am among rolling hills, high above sea level, hence the almost frost-bite, just-want-to curl-up-in-a-blanket, cold. The big cold house, aka “home” for the next 6 weeks, is cared for by a young Malagasy couple who live in their own little house across the garden, also within the high walls that keep us out of sight from the unpaved, rubble road. A green gate guarded by the husband at night along with a UN guard has such an unwelcoming feel to it. Outside the gate across the rubble road sit a group of men, huddled close, chatting and waiting, but for what I am not quite sure. They stare at me but I do not stare back. And it is not because I would not love to chit chat away in my pathetic Francais but I do not yet know what the local custom may deem appropriate. Anyways who says they would want to talk to me, some funny looking girl dressed like an Eskimo in weather, that although they also choose to bring out winter coats, too many bear in flip flops or even worse barefoot. It breaks my heart to see people here without shoes on, especially in this cold. In China, unlike India, I have never seen anyone go barefoot, no matter how poor they may be. I wish here we could cover all the bare feet with shoes. Tonight’s pray must give thanks for shoes, woolly socks, toasty warm toes in slippers...just a little perspective to make you grateful. When I am closed inside the house, far from the hustle and bustle of rusting clunker car traffic, choking fumes and chocolate and caramel, sharp to round featured, Asian-African faces, I could be anywhere. Inside my fortress ceilings seem to reach 12 feet high, the fireplace is quickly filled with dry wood and the kitchen full of fresh fruits and vegetables from the market awaits me to be prepared for dinner. For 8,000 of the local currency called Ariya (or $4 USD) a local market sold me a monstrous papaya, 10 ripe tomatoes, 4 avocados, 8 tangerine oranges and a pineapple that would kick Del Monte’s butt. While I try to get the francais into decent shape I am trying to pick up some of the first, of the three, official languages: Malagasy. “Salama” means hello. And yup that’s about it folks. Not bad for day 3 here, eh? Oh boy, now I really sound like a Canadian. Note to self, “never, ever let the 2-letter grunt out again!” (no offense meant to my maple leaf people). Oh on Saturday I went out to buy groceries in JUMBO, the big grocery store that sells quite an impressive variety of goods, even if I had never heard 99% of the brands. Lots of French stuff I could not recognize, much cleaner that the JUMBO in Angola (where I once stood in line for more than 2 hours to pay) and super bonus of all, takes credit cards. After Angola I have little expectations of what might available here but low and behold in this poor village like city, where houses are made of tin, brick and shack wood planks, fried foods are sold through clouds of black car fumes and most of the cars look like they have been pulled from the junker for one last round (including the tin, no power steering piece-of-junk taxi, aka my chariot, that somehow gets me without stalling around in which I should mention the driver was burning sandalwood incense this morning. It scares me to think how smelly the car must have been for him to have to do that...or maybe it is a religious thing...oh I hope not and better find out so I do not have such catty thoughts. Oh my taxi driver is monsieur Amidi but I prefer to call him (in my ludicrous mind only of course) my friendly giant. Yes this is the same knight-in-shining-amour who held his tanned leather hand out for me the other day. You see, he is HUGE! Big up and around, head, fingers, legs, arms and voice too...best of all he has the biggest smile I have ever seen. You can sell ALL of his teeth and then some. This guy could win a Book of World Records contest or in a toothpaste commercial and so it is that my friendly giant squeezes into his tin, crap junker which tilts to one side, almost touching the ground when he gets in and bounces up a little when he gets out. I am starting to like the junker, friendly giant et al!

"Are you dying?"

Hereditary Inclusion Body Myopathy (HIBM) is a progressive and debilitating muscle wasting disorder caused by a gene defect, affecting all of the body’s skeletal muscles, those we use for movement.   Since the disorder is recessive (both copies of the gene are damaged), anyone may become affected, even with healthy parents and parental families. HIBM touches those between the ages of 20 to 40 and although progression is slow, it typically leads to total disability within 10 to 15 years. The weakness and severity can vary from person to person. In some, weakness in the legs is noticed first. In few others, the hands are weakened more rapidly than the legs. Weakness is progressive, which means the muscle become weaker over time. Patients with HIBM come from all different backgrounds; the disease has no ethnic or gender boundaries. Currently, there are no effective treatments for HIBM and there is no cure.

Whenever someone asks me questions about my situation, I appreciate their curiosity as much as the opportunity to raise awareness about HIBM. What is sometimes not expected is the way they interpret what is happening to me. The most profound inquisition was in the middle of a casual conversation and the person said, “…so when a muscle has totally wasted away, that part of your body is dead, I guess, because you cannot move it anymore. So does that mean your body is dying? Are you dying?” You can imagine my reaction, first shocked by the question, and then perplexed by the thought that my body might be dying. Never before had my condition be posed to me in such a way, nor, had I ever embarked on such a morbid way of looking at my weakening state. As I do in many confusing HIBM moments, I shot the thought out of my mind. I am not dying! The muscles are wearing away.  

I refuse to dive into such destructive states of mind. I refuse to let my head be clouded with ideas that can only leave me distraught. I refuse to be distracted from focusing the greater part of my energy on the wonderful life I lead… because YES OF COURSE there are instances of sadness, frustration, anger, fear or embarrassment; without them I would not be human. These intense feelings and emotions can easily take over and make you crazy. But thankfully I remember my father’s words, “Just relax and take it easy!”

So what I guess what I want to share with this entry is that I sincerely do not worry about what the future holds, nor do I harp on the scientifically proven fact that my body is becoming weaker every day. With all honesty this is the best time in my life and I have never been so happy.  I use the limited energy that I have to live it up and make noise about HIBM so we can fund the cure! Slowly but surely, (AJ baby), I can do anything!

To learn more about HIBM, please visit: www.hibm.org

In the Domnican Republic: my first media interview about life with HIBM

On the first day of 2012 I gave my first media interview about living with HIBM. Listin Diario, the leading newspaper in the Dominican Republic asked to write an article as part of their campaign on positive living. The journalist came to the beautiful hotel where I was staying, Nicolas de Ovando, in the colonial part of Santo Domingo, actually situated on the oldest street in the New World. As we began to chat, sitting by the pool, a photographer clicked away, and other guests stared curiously. What was supposed to be a short chat last more than an hour with the journalist's eyes filling up with tears more than once. Why was the simple way I live my life and things I think about seem so miraculous to this woman? And then I have to remind myself that I do have an extra-ordinary situation with this disease and an extra-ordinary lifestyle with my fabulous career and world travels. She told me she complains every day and is never satisfied. To be honest I could not feel sorry for her. Rather my thought was, goodness if I had your good health what is there to complain about?

Being back in Haiti is good, really good. Work is exciting. Everyday I feel inspired. and this goes to show that when you have people around you who believe in you, the sky really is the limit! In UNICEF language we call that 'inclusion', something not to be underestimated. 

As I meet new friends I find myself having to explain constantly 'what's wrong' with my legs. A colleague asked mejust today if HIBM is a condition or a disease. And then he wanted to clarify that I am indeed sick.  At first I think I was concerned with such a clarification. But it passed quickly. Another new learning step in this life-altering adventure.

Keeping true to my 2012 New Year's resolution I am traveling to NEW countries. 2012 began with the Dominican Republic and in two weeks, for the first time ever, I will travel to Qatar to attend the 5th Shafallah Forum on Disabilities and Emergencies and give a presentation on the situation of children with disabilities in Haiti. Who would have thought that with something so awful (meaning HIBM) so many sensational opportunities would come to my life?!!!!!

My first reflection about living with HIBM

A dear friend once told me that, in allowing ourselves to be vulnerable and ask for help, is in fact a strength rather than a weakness; it allows us to love more honestly and be loved in return. These words of wisdom describe my life since realizing that something was happening to me, that something was wrong.

My story is similar to that of other patients, a tale of confusion, uncertainty and disbelief. My diagnosis came three and a half years ago, over the phone. Doctors could not tell me what was going to happen. And I never imagined it would be like this.

How do I, living with HIBM, put into just a few words, what I feel and think about this condition when it affects everything, everyone in and every day of my life? The struggle is exhausting; the challenge is never ending and the pain is frustrating.

Since I was young I always loved babies and dreamed of growing up to be a mother of five children; five mouths to feed (I love cooking); five adorable faces to cherish. Without a cure for HIBM, I am not sure that I will ever have even one child.

When I was in grade school I started dancing. By the time I was in university Latin dance was my most special passion, a way to express myself, share, teach, exercise, and feel totally alive! Because of HIBM, I cannot dance anymore, at least not the way I used to. My heart aches when I hear salsa music and see dancers twirl around but cannot join them. The movements and steps and turns are all inside me. I feel them still and I want to move. But I cannot. I remain to one side, at the edge of the dance floor, balancing on my cane, wishing I did not need the hidden leg braces, which without, I cannot walk straight anymore.
I would be lying if I said I have never moments when I weep with frustration, because the most simple movement has become so difficult. When you grow up with a full and active life, running, playing sports, hiking, skiing, skating, climbing and dancing, what are you left with when these joys are no longer possible?

I will tell you.

You are left with a new found appreciation for the smallest pleasures in life; the courage to ask a total stranger to lend a hand; unimaginable compassion and loving kindness that comes with sharing this journey with others.

We figure it out, day by day. And by we I mean my devoted parents, extended family, friends and supporters.

We talk, and plan.
We research, and inquire.
We reach out, and learn.

And most important we remain hopeful. Hopeful because we know that thanks to the enduring decidication and hard work of Dr. Daniel Darvish and Dr. Babak Darvish, other patient's involvement and ARM’s generous volunteers and donors, that a cure IS within reach. They discovered it. Now we, together, are trying to realize its development.

One way to measure the progress of HIBM is to gauge what the body can and cannot do anymore. My first noticeable change was not being able to push up onto the tips of my toes. That was five years ago. So, I ask you today, from the bottom of my heart, to stand up on your tippy toes for me, reach for the stars and make a wish; A wish that the cure for HIBM will be here for all of us very soon.

Thank you!