Facebook: Friend or Foe?

"When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand."Henri Nouwen 

"One of the most beautiful qualities of true friendship is to understand and to be understood."
Lucius Annaeus Seneca 

Welcome back to me! Hope you didn't miss me too much, and I promise not to be away for so long again. It has been a month filled with work, social engagements, wedding planning(my lil sis), catching up with old and new friends, yogaing, meditating, acupuncture, thrifting, editing, dieting and on and on the list goes. But, no more excuses. 

On to the good stuff- I finally found something to write about! One of my addictions and guilty pleasures: Facebook. 

It is no mystery that there is a lot of debate about the worth/value and validity of Facebook and other social networking sites. People complain that they don't want to hear about how many lattes you've had, or what amazing thing your kid did, or how much you hate Obama or guns. Everyone knows social media and the internet are changing social behaviors and norms. No one wants their kids attached to their phones and iPads day and night. 

But alas, here we are and what is to be done? Accept, embrace and use it with moderation much like everything else? Hate it and destroy or bastardize it like every other thing else? Let it die on its own till something better comes along? 

Who knows? I don't have the answer, and truth be told, in the greater scheme of my life I don't really care about "el que diran" (what they'll say) about el Facebook. 

What I know, is that Facebook and other social networking sites like it that I have connected myself to, have been the saving grace to the psychological and emotional struggles I've been faced with while trying to manage my illnesses. 

If I had been diagnosed with scleroderma or lupus "back in the day" in my early teens, I wouldn't have known where turn. All I would know of support would've been my family. And as supportive, loving and wonderful as they are, no one truly understands what it's like until they've lived it. Facebook, has provided me with the support system needed to emotionally, and psychologically survive chronic illness. 

I have been able to connect with and meet people from all over the world struggling with various auto-immune diseases and ask for advice, offer support, share recipes, medication advice, laughter, tears, joy, setbacks, progress and dreams. Something that was close to impossible even 6 years ago when I was first diagnosed. (I know this because I desperately tried to find others like me and only found 2 people who emailed me)

With blogs like my own, FB pages, websites, online support groups, Skype etc., I have and know an amazing group of people at varying stages in their illness and recovery that I know I can talk to when I just need a someone who understands. Someone who isn't going to judge me or question my pain. Someone who isn't going to tell me it's going to be ok cause hell, it might not be, and they know that from experience. Many someones who have put their whole life on hold (my age and even younger) to give themselves the time they need just to feel better. 

And, I know, is everyone's status update their reality? Probably not. But I sure as hell do appreciate that THE most positive people I know are the ones going through the worst hell. They're my sclero family, most of whom have undergone some form of chemo, transplant(organ and/or stem cell), physical therapy etc. and are still smiling in every picture, praising God every morning, and checking in on ME at least once a week. My chronic illness and auto-immune buddies give me strength when I have none because I know I'm one of the lucky ones. I finished college. I've been able to work. I found someone to love me. I can afford my meds and the best doctor's in the country. I breathe on my own. I walk on my own. I still have the use of 90% of my hands. They haven't given up, so neither should I. 

Has Facebook and Twitter made us all self-involved and self-important? Perhaps. Does posting your every  thought, meal, and bowel movement really matter to anyone? Not really. Have we created a culture where privacy is obsolete and common decency a thing of the past? Maybe. 

But at the end of my day, when my muscles are sore and my joints ache, if I want a warm smile or an encouraging word, all I have to do is open my laptop and log on.  And if that's the only thing Facebook is good for, that's good enough for me. 

Foreboding Joy/Cautiously Happy

“When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy. When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” 
― Kahlil Gibran

Hello again! I have returned..at least for now. And I come bearing good news.  The last month has been a whirlwind of new experiences, fun times and dreams come true.

The most exciting event that has occurred is…drumroll please…

 

My memoir: Mami, the Island & Me is getting published by FloriCanto Press! I am currently in the process of editing it and polishing it up to send back to them by the end of the month. There’s no word on when the book will actually be released, and I know that publishing can be a slow and long process, but I am optimistic and excited. Thanks to everyone who has supported my writing efforts, and

believed in me all these years.

When I read the acceptance email, I quite nearly had a panic attack. I paced in my kitchen back and forth, hyperventilating and crying tears of joy. I don’t think I’ve ever felt more excited about anything in my life. (My wedding day was beautiful and wonderful in it’s own way, a different kind of joy).  I have dreamed about this since the age of 13, when it was an elusive, unachievable fantasy. Much like winning a Tony or appearing on Oprah.

In that moment, it really felt like all the hospital visits, the personal and professional sacrifices and time that I had given finally mattered. I knew deep down I always wanted this to happen, and I truly believed it would. But now that it has, it still feels a little unreal. And, because my life has not been a “crystal stair,” I quickly began to fear the worst.

Now that my book is getting published- My lungs are going to collapse.

Now that my book is getting published- My husband is going to die.

Now that my book is getting published- I’m going to get cancer.

Now that my book is getting published – My house will catch on fire.

Now that my book is getting published-  My scleroderma symptoms will return and I’ll be bedridden for life.

My tears of joy and my elation quickly transformed to angst and fear. The last time I felt this kind of joy, it was ripped out of me (quite literally) and taken away. The last time I felt this kind of joy I was pregnant, and then, I was not.

I began to question everything. It’s what a friend of mine calls “foreboding joy.”

What if they rethink they’re answer and say no?

What if I don’t sell any books?

What if I get horrible reviews?

What if it’s a great success and then everything else I write is measured by THIS?

What if I succeed and can’t handle it?

Do I really deserve this?

When will it be taken away?

I had to take a moment and just step back from it all. I had to separate my past from my hopeful future and just accept the present. A lesson my yoga and meditation practice has been desperately trying to teach me for the last 8 months.  So, I sat at my computer, re read the email, and just smiled.  I told my husband and my mom and asked them not to share the news with anyone. I wanted to enjoy it privately for just a little while, just in case…

When I told my husband about my initial fears and anguish, he told me something that put it all in perspective (I love that about him, he always makes everything better). He said:

“Honey, even the house does catch fire. Even if you do end up in the hospital, or get cancer, or whatever. Even if any or all or none of those things happen, it doesn’t change the fact that your book is getting published.”

And it hit me, there are some things in this life that can’t be taken away. I’ve known this about my education and my talents and skills, but I had yet to wrap my brain around it for my other dreams. No matter what tragic life events occur around me, there are certain life affirming events and milestones that will and can remain constant.

I am married to a man who loves me.

My parents support and love me everyday.

I know what my purpose in this life is, and I try to live it everyday.

My words, my life and my presence have inspired hundreds of people.

It no longer mattered if I sold 10 or 10,000 copies. I know my words will reach someone, and hopefully that someone will be changed because of it.  The fact that it’s going to get published is the greatest success of all, and what comes after is just a footnote, not the whole story.

Life has an interesting if not cynical way of working itself out (if you let it), and I think I finally just let go and let it. I finally truly listened to what my body was trying to tell me and I rested. I responded to my gut instincts by taking the time write while I gave my body time to rest. I took a risk and submitted my manuscript because I had to. You can call it God, the universe, divine intervention, whatever you want, but something greater than me guided me down this path and insisted that I pursue this dream. If not for myself, then for others whose lives might be changed because of it.

If only because, I remember when I first read “When I Was Puerto Rican, “ and Miguel Pinero’s “Seeking the Cause,” and how I finally felt like someone understood ME. That my story and my history was being told. That I was not alone in this world after all.

This first memoir is my baby. It is in recognition and in honor of the miracle of life that has been granted to me, on more than one occasion, when my illness could have wrecked havoc on my own dissipating body, but I fought it tooth and nail. 

This memoir is the concrete representation and metaphorical symbol for my own rebirth and awakening. Writing and publishing a book may not seem as miraculous as birthing a child, but for me, it has been and will continue to be a labor of love.

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.

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. 

The Energizer Bunny

“Resilience is accepting your new reality, even if it's less good than the one you had before. You can fight it, you can do nothing but scream about what you've lost, or you can accept that and try to put together something that's good.”
― Elizabeth Edwards (UK)

"You're my hero, you know. You just keep going and going and going," they said to me. And I nodded. And I smiled. "What else am I supposed to do?" I asked to no one but the air, the wind, the trees and the grass. It was a rhetorical response meant for deaf ears. Because the alternative to "going" is an option no one is willing to consider.

What does it mean to be resilient? What would I have to do to be considered otherwise? Friends, women and family look at me sometimes with wonder and awe. They show respect for my suffering and admit their admiration of my talents and persistence. And I am truly grateful and humbled by their praise. But I can't help but wonder, who or what defines strength? And why is it something to be admired?

Was it resilient of me to see a therapist for 4 months after my miscarriage?
Was I strong when I broke down in my car at the CVS parking lot because I saw three pregnant women and wondered why not me and then debated whether or not I should speed my car into oncoming traffic?
Was I heroic the first, second, OR fifth time (yes it truthfully has been that many) I quit my "real"job to be able to manage the other full-time gig known as scleroderma?

Or was I weak? Is asking for help an admittance of failure? Is the consideration of suicide an admittance of worthlessness? Is quitting or running away a sign of giving up?

I don't know. Perhaps.

But perhaps the strength lies in the fact that instead of filling the anti-depressant prescription, I wrote poems instead. Perhaps my resilience is defined by the fact that I drove back to work and taught three more classes with a broken heart and smile on my face. And maybe my heroism is found in the acceptance of my limitations and my willingness to let go.

Either way, I still can't help but be confused when people tell me: "You just keep going." Because truthfully, "What else am I supposed to do?"

I never did any of the things I did with the intention of being admired, much less become anyone's hero. I did them because like my mother says "no me quedaba de otra." (I had no other choice.) I could put in a new set of batteries and keep beating my erratic drum, or I could stop. Stopping was not an option.

So instead, I beat my drum loudly and march to its beat at a pace that is comfortable for me. I write to survive. I laugh to keep from crying. I love to feel at peace. If that is resilience, then yes, I am resilient. If that is heroic, then yes, I am heroic. And if strength is defined by my ability to get up every morning and do it all over again and again, then yes, I guess I am strong. I do it not for praise or admiration. I do it simply for no other reason than the fact that I really don't know what else I'm supposed to do.

But perhaps too, that day in my car, the many times in the ER and at the hospital, at least once a month in my bedroom and even a couple of times in my classroom, when I let the tears fall and tell no one but God and the silence that I can't do it alone, that I am the most resilient of all. Sometimes, the most heroic thing we can do, is admit that we are weak.

What Could Be, A Lesson on Perspective

“We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses.” 
― Abraham Lincoln

In the last two weeks I have had my 4-6weeks check ups with both my cardiologist and rheumatologist. And I am happy to report that those had to be the two easiest and quickest visits of my life. I spent more time in the waiting room than I did with the doctor. My cardiologist declared me "the healthiest patient they have to keep seeing," and my rheumatologist said I didn't have to see him again until May.  Woo hoo! This may not seem like much to the average healthy person, but for someone like me who has had to go to the doctor on average 2x a month for the last year...this is HUGE! It means that my life is not in imminent danger of ending. :)

Despite the pitfalls, challenges, ups, downs, turnarounds, detours and chaos I am truly blessed. I am in a great place. Before seeing my rheumatologist this week, I was kind of in the dumps. I wasn't feeling well and my mood sucked. I was upset because I was feeling that life was unfair (yes, I know I sound like I'm 12). I felt that there had to be more than waking up every morning and trying to convince myself that I was lucky to be alive. That "all would be well" if I just kept repeating it to myself. I felt sorry for myself and wanted to sulk. I almost didn't make it to my Dr.'s appointment thinking "what's the point?" But, I'm glad I did.

I'm glad I did not because of what he told me and the clean bill of health he gave me, but because of what I was reminded of while in the waiting room: How bad this disease could and probably should've gotten by now. Five minutes in the waiting room and I saw several disfigured hands, a woman in a wheel chair, two oxygen tanks and a sea of sad eyes. Sad eyes that stared at me discreetly looking for my ailment. And yet, five years post-diagnosis and my physical appearance has remained relatively unscathed.

Have I had my fair share of scares? Yes.
Are my insides scarred and damaged? Yes.
Is my disease still active? Hell yes.

But, I choose to see the roses and not the thorns. The roses are the fact that 10 years ago, a scleroderma diagnosis was a death sentence, but not anymore. The roses show me that I'm blessed to be able to type this post because my fingers still work. The roses ask me to smell them with a big deep breath to appreciate the fact that my lungs still work well on their own.

At the beginning and end of every day...it's about perspective.

And today, I want to give you some. While in the waiting room, realizing what my life COULD be like and taking a moment to appreciate what it is, I decided it would be a good thing to share this perspective with my readers.

I took it upon myself this week to photograph the significant parts of my body that could/should be affected by scleroderma and I compared them to pictures of what it has done to others. Below are some of those images....just so those of you who don't live with this or any other illness can understand and appreciate the little things that even I take for granted sometimes.

What my arms/hands/legs COULD look like. Notice the
shiny, tight skin and curled fingers (movement is extremely
limited)

What my arm/hands DO look like. ("normal") Ams
used to be shiny but have returned to "normalcy."

Finger tip ulcers from Raynaud's- what it COULD be.

Notice the two small "pits" on middle finger and pinky.
Almost harmless as long as I keep them clean and avoid the cold.

What my hands/joints could look like.
Joints are permanently damaged and skin is tight.

What my hands do look like/ joints are unaffected,
minimal but unnoticeable skin tightening.

What I could have all over my face. Though this is not painful...
it ain't cute either.

I only have a few spots, notice the large one on the cheek,
a few on the nose and the camera didn't capture the rest.

~~~~~~~~~~~~~~~~~~~~~

So, I guess what I can take away from all of this is that when people tell me that I "look good" I will say thank you and mean it, and not get upset because yeah...I do.