Wednesday, March 27, 2013

Video Project

Today...I got inspired. After today's earlier blog post, I saw an opportunity to share my words and my journey so I did. I hope you enjoy:

Would You Like Fries W/That?

"We are always free to choose, but we are not free from choice."-Anon

There is something magical about the way the sun's rays creep between the leaves and branches of a tree. It's like the part of nature we can't touch trying to make contact with the part of nature that's out of it's reach. I know that the sun is part of the life giving forces and energy that keep trees and plants alive but whenever I'm outside, it's like there's a very silent but meaningful conversation happening between the sun, the sky, the wind and everything else. I try to contribute with my silence because I know that my words would only shatter the effortless flow of dialogue like an awkward pause at a dinner party.

It was during one of these conversations that I was having with the wind and the trees and the sun today that I was able to reflect on a comment I made earlier in the week: "I have options even if I don't have answers...yet." It got me to thinking about how true that statement is for all of us who live with an auto-immune disease. And when I said it, I wasn't even referring to my auto-immune condition! (Ah the irony)

The reason this statement rings true for most, if not all of us, is because from the moment of diagnosis to the point of remission, flare, remission flare...etc. we are give SO many options.

The option of which drugs to take or not take.
The option of which doctor to go to or not go to.
The option of which tests to take or not take.

Some of us, if we're lucky have EVEN more options than that:

To work or not to work.
To get up today or to stay in bed.
To eat healthy or food binge ourselves into oblivion.
To workout or to relax.

Acupuncture or massage therapy.
Organic or gluten-free.
Stairs or elevator.

It never ends. These choices, though seemingly small to the healthy lay-person, can often be excruciating decisions for those who suffer with pain and fatigue on a daily basis.

And yet, even with all these options we still don't have any real answers.

What causes our disease?
Is it genetics? Environment? Both?
Is it going to kill us?
Or will it save our souls?
Can it be cured? (Usually that's the only answer we DO get...a big fat "NO")
Will this alternative treatment actually help me?
Will I go into remission? For how long?
Can I have kids? Is it safe?
How will this affect my family? My friends? My social life?
Why me?

So many options, and still a million question marks. I often feel like the dyslexic kid who sits down to take a multiple choice test he hasn't studied for and all the choices are marked either "b" or "d." Some of the choices look right, others don't, but I still don't have an answer and God forbid I ask the teacher for help because all I'll get is a dirty look and a shoulder shrug.

The teacher in my case are the doctors and the medical field, the test I'm taking is the cliched one called "Life w/Scleroderma," and no matter which options I choose, I will turn my test in and never get a final grade. Why? Because auto-immune diseases aren't Cancer. They're not as predictable and there are too many options, too many variables and not enough concrete answers.

We are the science experiment without end. Our lives are the hypothesis that is never proven or disproven, merely revised.

What this means for us, however, is that we have the power to choose our treatment plan, to choose the lifestyle that is going to help us manage and live fruitful lives. Sometimes our choices will take us on painful roads. We may lose family or friends based on our choices and we may gain some. We may relapse or flare because we choose to do something other than pop 20 pills a day. Regardless of what it is we "choose" to do, ultimately, we have to choose because that is what gives us back the power and control of our lives that we need in order to survive and endure the journey.

Monday, March 11, 2013

Something To Live For

“It is good to have an end to journey toward; but it is the journey that matters, in the end.”
Ernest Hemingway

I stare at the blank page and am finding it difficult to summon my muse. She likes to hide from me when I'm happy, when I'm at peace. And that is what I am these days. Happy and at peace. I say those words cautiously however because I want the feelings to last and not be taken away by someone giving me "ojo." But I suppose that's life. Good times and bad times like Charles Dickens once wrote. 

But it's true, I haven't written in a few weeks because I have not been inspired to write. I have been "too happy" to write. And yet, I did not want to let another week go by without sharing something. I do not want to be one of those people that only shares and writes and is artistic when things are bad. It is important to share the good stuff too. It is important to share the whole journey, not just the bumps in the road. 

Truth is, I realized this very early morning that I haven't been inspired to write because I have been inspired to do other things.  And that's ok too. For the last 5 years I have come up with random schemes, goals, and projects that I never followed through on. That have never come to fruition. And, now in the last 5 months I am making them happen. I am no longer afraid to "fail" at them because I know that just by getting them started and off the ground I have already succeeded. 

The projects that have kept me from writing and have fueled my inspiration are: 

1. DR School Supply Drive: My maternal grandfather passed away in the 80's when I was just a baby. During his lifetime he became a well respected teacher in many small villages in the Dominican Republic. In one of those villages, he was so admired that in 2010 they built a small school and named it after him- Escuela Angel de Jesus Duran. When I learned about the school, I decided I wanted to help in some way. 

In 2011 I decided to collect school supplies and try to start a scholarship fund for the students. Well, life got in the way and nothing came of it until this year. I enlisted the help of my former colleagues at Cristo Rey H.S. and last month the student council helped collect over 1000 items for students in the DR. From pencils and pens to folders, calculators and rulers. What's truly amazing about all of this is that the students at Cristo Rey are considered "at risk," "disadvantaged" and (shudders) "poor." And yet, even they realized how lucky and privileged they really are compared to those in other countries. I am amazed by their generosity and thankful to know such giving and wonderful people.  My friends and family have also helped by donating supplies and money so we can purchase more of the things we need. 

In June of this year, Lupe my and parents and I intend to go to the DR and give the supplies to the school in preparation for next school year. I am super excited and really proud of myself and my efforts for making this dream come true. This is only the first small step and I truly believe that, in time, I will be also able to create and maintain a scholarship fund for these students as well. I never thought it would be so easy to do something so significant. 

2. The GEIA Network:  In 2007 when I was first diagnosed I wanted to create a young women's support group for chronic illness/disease sufferers. I only got about as far as creating a flyer and receiving one email from a young lady who was interested. I felt discouraged and quickly gave it up. Over the last few years I have thought about how much I wanted to connect with other women who have experienced what I have. I just never knew where to start. 

Recently, my best friend was diagnosed with MS. It has been a rough and incredibly life changing experience for her. She knows I am one of the few people that truly understand what she's going through and I have been able to help get her through these first couple of rough months. Knowing what I know now and seeing the difference I have been able to make in her life, I decided that now was the time to make something happen. Aside from my best friend with MS, over the last year I have made friends with too many women who suffer from chronic pain/illness and whose lives revolve around taking medications, managing fatigue or pain and who have had to give up the things they love just to feel "ok." I decided that enough is enough and we don't have to feel or be alone in our struggles. So, the GEIA network was born. My best friend and I began to collaborate and came up with the idea for the GEIA network: Get Empowered, Inspired and Artistic. The name "Geia" comes from the Greek goddess of good health "Hygeia." We turned it into an acronym and made flyers and a FB page to spread the word. 

The goal of the group is to get women who suffer from an auto-immune disease or chronic pain/illness together to do things that will empower and inspire them so they don't feel alone. I hope to create and host monthly events where we can come together and share stories, experiences, advance and just have a good time in whatever "easy" way that is. It is not a time to have a pity party (although sometimes we may need that), but rather it is an opportunity for us to feel strong again. It is a time for us to take our lives back. The first event is a small "mixer" this coming Friday and my goal is to have at least 10 women there. If I can achieve that, then I know that even greater things are possible. 

These goals may seem small or arbitrary to some, but they're a huge deal not only to me but to the people that they effect. They are my personal projects that are finally coming to fruition and that I am passionate about, not because of any recognition that I expect for myself, but because of the people that they help. I am passionate about education and believe that all children have the right to learn and they can only do that with the right resources. I am passionate about women's health and empowerment and I believe that there is strength in numbers. The more women who come together to spread awareness and support each other, the stronger we all are. In the end, even if just one kid gets a pencil and a folder that he/she didn't have before and if even just one other woman makes a friend and meets someone who she can reach out to in a time of need, then the journey and my efforts will not have been in vain. 

So forgive me if I do not write as often, because my time and talents are being focused elsewhere. But do know, that my heart and my spirit are in the right place and I will have plenty to share once I return from taking these paths less traveled by.