songs of solitude;

left and leaving

tomorrow.

Tomorrow is just the day for leaving myself behind. I travel without purpose or pretention. Without preconception or pride. Without any pompus p-word vocabulary of any kind. Save, of course, my destination: Peru.

It seems a mystery at times how things in my life have unfolded as they have. Sometimes I ask so many questions that I find myself unable to manage mere statements anymore. For what is really all that conclusive?

And here is where you find me. Asking questions when I should simply be recounting the details of my recent turning of events. In the spirit of questioning, I will start by reference one age-old. Many question the existence of God, claiming that the idea is simply inconceivable. The logical thinkers, or maybe just those of little faith in anything; if I can't see it, it can't exist. But then such events occur, as the one am to tell, that leave no other conclusion in my mind than the work of a master's hands.

It was just four short months ago that I first met Angela. Two weeks into the fall semester, I received a bizarre e-mail from an address I didn’t recognize. A woman by the name of Angela wrote me a concise, three-line e-mail stating that she lives in Peru, has a daughter, and would like to talk to me. I almost dismissed the e-mail as spam, but the title "mama (fss)" caught my attention. FSS stands for Freeman Sheldon Syndrome - the rare condition I was born with. Only about 40-50 people in the world have it and the chances of being born with it are about 1 in 150 million. Suffice it to say I have never met anyone else affected by the condition—at least not face to face...yet.

I recollected registering on a disability network service several years ago and figured that this woman must have gotten my e-mail address from there. So there I sat, staring at the reply screen, wondering what on earth to write back when Angela signed in on my MSN all of the sudden. I didn’t remember adding her, but figured it would be easier to just ask her in MSN what questions she had about FSS.

What I didn’t realize was that she spoke only five words in English. Admittedly, I only knew one sentence in Spanish at that point, being only 2 weeks into my Spanish 100 class, so I greeted her and asked her how she was doing, as I quickly rummaged my bag for my Spanish-English dictionary and textbook. Two hours of somewhat frustratingly slow translation skills on my part, I learned that Angela had a 8 month old baby girl named Esmeraldita who also has FSS. Her and her three children live in Lima, Peru where none of the doctors have seen FSS before and subsequently feel unable to provide Esmeraldita with adequate medical care. Both her feet are clubbed and need surgery—one which I endured on my right foot when under a year old.

Like any mother, Angela was worried about her baby. When the doctors couldn’t provide her with sufficient information, she searched the internet for any help she could find. But seeing as how most information is in English, and all of the registered people on that particular website (less than ten) live in English-speaking countries, her search was quite in the dark. But since that fateful day, we have weekly conversations in MSN with our webcams. I have met her other children, Franco and Fiorella, and of course little Esmeraldita. I have done my best to answer the questions that have been plaguing Angela from day one. And I am helping her pursue treatment for Esmeraldita at a Canadian hospital. Angela recognizes the disadvantage her daughter has living in Peru and only dreams that her daughter will be able to enjoy life as much as possible with the love she provides to make up for lack of substantial financial support. Her dream is to one day see her daughter walk and lead as close to a normal life as possible in South America.

It’s funny how much we take life for granted. I don’t often throw myself pity-parties, but I would be lying if I said that I never wished for a normal body. But before this experience it had never occurred to me how much having access to Canadian health care has affected the person I have become. I can walk, I can skip, I can run—things that I may otherwise not have been able to do without the several difficult operations I received in my early years. But I never expected to learn so much from an 8 month old little girl. For me to wish away my condition is selfish. Without it, I would have never gained five new wonderful people in my life/family.



And so, tomorrow. Tomorrow brings answers to questions of my own.

posted by crooked girl @ 11:24 AM