One Year Ago...

“Dance, when you're broken open. Dance, if you've torn the bandage off. Dance in the middle of the fighting. Dance in your blood. Dance when you're perfectly free.” 
― Rumi

One year ago today I was off all of my meds 

One year ago today I was ready to start a family 

One year ago today I had much longer hair 

One year ago today I was working full-time

One year ago today I would not have guessed that I'd be where I'm at today

This past Saturday night I celebrated my birthday. I celebrated it with a great group of close friends and family. We ate delicious food, drank a few drinks and danced the night away. It was the perfect evening to round out a not so perfect year. And yet, as I sat in the restaurant before anyone else arrived I had a few minutes to reflect on my 27th year of life, and I realized that I actually didn't want it to end. I realized that I was going to miss being 27 and I wasn't sure if I was ready for 28.

You see, despite it's challenges, I feel that this past year I finally came into my "womanhood." I always felt like a girl before. Depending on others for my life choices. Trying to live up to my mother's and father's expectations of me. Trying to be the "perfect" wife for society to see. Wanting and needing the approval of those in "authority."  But at some point this year, something within me clicked and the transition began. I started to leave that scared naive little girl behind and I began to embrace the strong, powerful, loving and unique woman that waited in the wings.

Perhaps it was the prospect of becoming a mother that made me feel "all grown up." Perhaps it was the loss of that prospect that made me realize I had to deal with my own problems and no one else was going to "fix" them for me. Perhaps it was the numerous ER visits or the feelings of helplessness that ensued after each visit. Perhaps it was the anger that I felt at losing all control over my own body. Perhaps it was simply just time. Whatever and whenever it was, this past year I finally said "yes" to the woman that I needed to become and on Saturday night I let her "dance to keep from crying/dance to keep from dying." -(Ntozake Shange) It was therapeutic, it was fun, it was what I needed.

Below is an excerpt from my memoir (a very long work in progress) about the importance of music and dance and how it's shaped me and helped me on this life journey. Enjoy.

And those who were seen dancing were thought to be insane by those who could not hear the music.

-Nietzsche 

REALITY

            I like to dance Salsa, merengue, bachata, hip-hop, pop, anything really.  I like it when my hips sway. My legs and feet often stumble to the beat, but I feel the rhythm, the soul and the passion of the music.  I can twirl and shake for hours. Whether I’m cleaning the house, at a club, or drunk or sober, I like to dance.  All I need is to feel the bass, the guitar, and the drums. The drums that beat like a schoolgirl in love.

            Since I was a little girl, and Mami would play Juan Luis, Julio Iglesias or La India on our record player and clean I knew music meant something to my family, my culture and mi gente.   The soulful rhythms, reminiscent of a simpler life back in the DR are what kept my mother sane most days.  Without mournful voices and synchronized tambourines, I’m sure my mother would have packed a bag and left a note like so many other desperate housewives of her time did.  But deep inside she knew she had to let Jerry Rivera and Los Hermanos Rosario keep her heart alive and her spirit free. 

            Unfortunately for me, however, her strong beating heart meant that I would be awakened every Saturday morning by a humming vacuum, a güira, a guitar and some Caribbean man’s achy voice complaining about a maldita mujer that left him for another man.  All this racket would eventually be followed by Mami screaming, “¡Levántate de ahí ya!”

To which I would regretfully reply, “But why?!” 

And carefully but deliberately she’d come to my bed, snatch off the covers, leaving me cold and afraid and say, “Porque yo dije, because I said so.” I would then oblige, get up, and commence the weekly rituals of dusting and scrubbing, as a scratchy merengue rocked the house and my mother back and forth.

            The cleaning, singing and missed step dancing became a ritual in our house that lasted more than 10 years. It vibrated through our walls and under our feet. It made us laugh. It made us angry. It was a silent prayer, a requiem for diminished dreams and an uncertain future. Amidst my mother’s nagging and my rebellion, it was the only way we knew how to make peace.

I knew then, as I know now that music is essential to the well being of my family and my culture, that dancing is not only crucial but necessary for our survival and that both define who we are as a people and a race.  Sometimes, it feels that Scleroderma has taken that away from me.

            Sure, my hips still sway from side to side and yes, I still feel the drums pulsating through my veins, but I cannot dance like I used to with my husband anymore. And for me that is the greatest tragedy of all.  Our first kiss happened while we danced.  We made love on and to the dance floor before ever taking off our clothes, and when we finally did, there was a soft bachata playing in the background. 

            All these things I remember when I catch my breath and grab my aching thigh as the salsa has just barely begun and I’m already headed back to my seat.  But my husband just smiles, places his hands on my stubborn hips, guides me back, takes a drink and asks: “Are you okay, baby?”

And I lie and say: “Yes.” Because physically I know I’ll be fine, but as a Dominicana I feel like I have lost something.  I feel that I have had to abandon a part of me that doesn’t want to be left by the side of the road. The part that connects me to a place and a people I will never quite fully understand or be a part of. 

I am now stuck floating between three worlds, three “cultures,” three distinct selves that require attention: my American self, my Dominican self and my chronically ill self. I play tug of war on a daily basis and I never know who is going to win. Will I have the strength to sweep the floor and salsa side to side today? Will I decide instead to write Haikus and listen to Jewel? Or will Scleroderma win and keep me in bed all day, tired, confused and heavily medicated? I can never accurately predict which self will be expressed and embraced on a day to day basis but I accept and believe that even if my illness or work or life get too crazy I, like my mother always did, still can and should find the time, the energy and the spirit to hear the music and dance.

Communicate & Compromise: Keep Your Relationships Strong

God grant me the serenity to accept the people I cannot change

Courage to change the one I can,

And wisdom to know it’s me.

I wouldn't change him for the world.. :)

Every morning when I wake up I do 3 things: 1. I meditate for 15/20min sitting up in bed/2. I pray and give thanks for everyone and everything./3. I stand up, stretch, say the serenity prayer and walk the dog. 

I began saying the Serenity prayer two years ago in 2010 shortly after another flare, the FIRST time I quit one of my full-time jobs. And actually that was the same year I started this blog. (Are you beginning to see a pattern?) 

Now I can't honestly remember when I heard or learned the serenity prayer, but for some reason it stuck with me and it's helped get me through some of the most difficult times. 

For those who don't know it (no it's not the quote at the top): (Short version)

"God grant me the serenity to accept the things I cannot change

The courage to change the things I can

And the wisdom to know the difference"

Most people know this as the"Alcoholics Anonymous" prayer...and I'll be honest, I don't really know why. Aside from the fact that they start every meeting this way. (Or so I've been told.) But I find that when you live with a chronic illness, this prayer can get you and keep you from hell and back again if you decide to truly live by it. 

I cannot change the fact that I am sick. But I can change what I eat. 

I cannot change that this is forever. But I can change how I react to my flare ups.

I cannot change how people react to my illness. But I can change their understanding of it and of who I am now because of it.

The wisdom I have gained about the last CAN and CANNOT is what I want to blog about today. I believe that whether you are sick or healthy, it is wisdom that everyone can use.

It is what it is...

~~~~~~~~

Relationships are hard. For everyone. Building a relationship, keeping a relationship, rebuilding it etc. And I don't just mean romantic relationships. Friendships, family ties, etc. etc. etc. and on and on the list goes. They are hard because life happens. They are hard because people change and grow apart. They are hard because sometimes we want them to change and they don't. They are hard because we don't give them the time, love, attention and nurture that they deserve (the person or the relationship itself).  

Whatever the reason, if you want to keep a relationship strong or you want to rebuild an existing one, the two most valuable lessons I've learned in my short life is that they cannot function properly without COMMUNICATION and COMPROMISE. 

Each person must be willing to communicate his/her wants, needs, desires and feelings AND each individual must be willing to give a little in order to get a little. Or sometimes, (as can be the case when you're chronically ill or live with chronic pain) give a little and be amazed at how much you actually get back in return. 

When I was first diagnosed, it was difficult for me to accept my limitations. I pushed myself too hard and then paid the price afterwards with 3 days in bed and unbearable pain. I refused to ask for help and I didn't talk about how I was feeling physically or emotionally. I bottled up my pain and insisted on living a "normal" life. In return, I was making me and everyone else around me absolutely miserable. 

When I finally broke down, and realized that I WASN'T indeed Wonder Woman and that I actually did have a wonderful support system that was willing and ready and wanting to help me, a whole new world  opened up for me. 

I began communicating with my husband, friends and family about what I could and couldn't do physically and sometimes even mentally or emotionally. I said things like "No, I can't wash the pots and pans. Can you help me?" or "If I go out to lunch with you I won't be able to go to the movies because I will need to go home and rest." Instead of cancelling plans or hurting people's feelings we had more game nights and BBQ's at our place. I communicated clearly what I needed and in return they actually compromised and were able to not only give me what I needed to survive and function but they also gave me their time and love so we could keep our relationships strong. 

I also learned to listen to my body and what it was communicating to me and I learned how to compromise with myself. Instead of trying to take on the world, I tackled one thing at a time and ALLOWED myself to be ok with accomplishing small goals vs. large insurmountable ones. I no longer beat myself up if I wash the laundry but don't fold it. Or if I have to take a break from sitting at my desk after only 1 hr. I realize it's going to be fine because this is what I need- guilt free.

Family and friends can be surprisingly understanding if you help them understand by communicating. Sure, my illness is "invisible," and many people are thinking "she looks fine." I can't change what they are thinking, but by talking about what's really going on inside of me I can help them better understand that no, I'm not "fine" and what I need is different from what everyone else needs. And that if they are willing to meet me where I'M at, then our relationship can be as strong or even stronger than before. 

I am not who I was before. I have accepted that. Some people in my life have as well. Others have reacted and are still in denial. Some are angry. Some are confused. Some have simply disappeared. I cannot change my fate or my condition. I cannot change how THEY react to it. But what I CAN do is shed light and share the wisdom I have gained about living with these illnesses firsthand. I CAN change how much they understand about what is happening to me. I CAN change my responsibilities in the relationship so there is a sense of balance. 

I know that the rest is up to them. What THEY choose to do with what I give them is something that I have no control over. And in the end, that actually brings me a greater sense of peace than anything else. In the end, I know that I have done what I can to keep the relationship strong and that's all I need. I can actually let go and let God. Let go, and let "them." 

To this day, I can honestly say, that each relationship/friendship etc. that I have approached with this idea of communicate and compromise has survived and even been strengthened overall. There have been struggles, matches of tug of war, misunderstandings, miscommunications and fits of crying, yelling, cancelled plans, undone chores and lonely nights with a glass of wine and cupcakes. And yes, there were some relationships where I chose not to communicate and/or compromise as needed and those relationships have suffered or have been severed. Do I miss them? Yes. Is it for the best? Probably so, but either way I have learned to just let go.

Each relationship is its own beautiful monster that just needs to be held at night and given love. It is not easy. It is even more difficult when you are ill. But in those dark times, on those soul-searching nights, if you have even just one person, one relationship that you can count on to bring youout of the shadows and into the dawn, it is always worth it. 

~~~~~~

Tips/ideas for compromising and maintaining healthy relationships:

1. In marriage/romantic relationship/partner- 

Give a little get a lot in return

Chores:

•         Do half the dishes and leave the heavy ones for spouse.
•         Share the kitchen- one chops veggies the other makes the rice or cooks veggies
•         Schedule specific chores for ONLY those days and stick to it! (Sunday Laundry day, Monday bathroom 1, Sweep on Wednesdays, Dishes every other day)
•         Have those “ain’t never gonna do them” chores, for me it’s mopping, I only mop if something spills, looks brown or I’m having people over..like lots of ppl.  Mopping hurts my back, my hands, my shoulders and my sanity. If it bothers spouse so much, they’ll do it!

Social Activities:

Salsa Dancing...

•         If we go out to a “fun place” today we rest or do something “boring” tomorrow.
•        Or if we’re gonna have “fun” you have to serve me lol or not force me to move or talk to people.
•         Hubby wants to go to a sporting event? Let him go with a friend but force him to take pictures and send them to you

  
  

  
  

  • • OR Tell him you’d rather host a BBQ with a few friends to watch it at home and allow yourself to go to bed when you’re tired without feeling guilty!  His friends and mine know that when I’m tired, I’m tired and I’m gonna go to sleep…especially if I’m at my own house!

With yourself:- 

Allow yourself not to be perfect

Your face...your face

• Washed the laundry? Throw yourself a party, don’t feel disappointed cause you didn’t put it away. 
• 
  

  Tell yourself what you will and won’t do for the day and be truly ok with it.
• 
  

  Today I will load the dishwasher and sweep'

  
  
  
• Today I will not mop, because I can do that tomorrow since no one is coming over and the floors aren’t sticky. 
• When you’ve done what you said you would- rest, take a bath, read a good book celebrate the success with your spouse. 

Friends & Family:

They want to see you, you want to see them.

New Year's w/Friends

• Invite them over and have a pot luck. You provide salad and drinks(something you don’t have to work to make!) Insta girls’ night!
• House not up to visitors? See if one of your close girlfriends can pick you up and host it at her place. Again, take a salad! Curl up on couches and chat the night away. 

Get a really close friend/your mom/sister/daughter

• If you’re up for it go to the Dollar Store and buy some cheap funky nail color.
• Go home and give each other mani/pedis
• Massage hands/feet whatever you’re comfortable with and talk and hang out
• Can’t paint your nails?- Bake or cook something together. You can sit and chop, cut or mix
• ingredients and she can stand and do the heavy lifting…you’re still bonding!
• Too tired to move! Find a favorite short story online or in a book and read them to each other on the
• couch. They can be funny, serious whatever!

Essentially DON’T compromise your health for those who aren't willing to compromise for the relationship. Balance is hard but not impossible and it takes time to master so allow yourself to be patient while you figure out what works for each of you! Truth is if you tell people what you need so they can still be an integral part of your life, those who love you WILL give you what you need. And they may not even realize how much they’re giving! 

Pudding Pops & Progress

Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.
Bill Cosby

Progress:

There is still fluid around my heart.

Now on to...

Pudding Pops:

On Thursday, as I sat in the waiting room of my cardiologist's office, I realize that I don’t know if I’m in a doctor’s office or at the Huxtable residence. Flower printed Victorian style chairs in burgundy, beige and stale green line the pale yellow walls. Pictures of an empty café in Paris or Prague hang idly on the walls and brochures for better health tempt you with promises to a cure a disease you don’t even have…yet. Wilted silk flowers haphazardly placed in rusted iron vases attempt to spruce up the joint and a shiny coffee table covered in dated magazines serves as the distraction to the awkwardly quiet environment everyone here is trying to escape from. 

All of it so simple yet so overwhelming for the new comer or the regular. No matter how often you sit and wait in the room, you are not here because Bill Cosby wants to share his pudding pop with you and give you parenting advice. This is definitely not the Cosby show. 

As I look around, I am clearly the youngest person in the room. Aside from the bubbly but incompetent receptionist at the counter who looks maybe about 19 on a bad day, everyone, including the African American lady who can’t see the forms she’s filling out has a few grey strands poking out from underneath her hairpiece.  (They say black don’t crack, but we all age in one way or another.)

Two Caucasian ladies are asleep, heads nodding forward but still able to clutch their purses for comfort. I scan the room some more and see a sea of loose skin, age spots, double saggy chins and necks and wonder what THEY think of ME. 

There are three white men who are sitting, legs crossed, reading books/magazines. They sit the way I imagine they do every morning they wake up to another day of retirement or disability: upright and determined not to die. Only at home they read with a cup of coffee at their side and not the nagging sensation of impending doom. 

I realize that everyone that enters and exits the room limps, hobbles, coughs, spatters, stutters or needs help. Everyone but me. I am young. I am limber.  And despite my 5 night stay in the ICU 40 days ago, I still feel like I can conquer the world. Now if only they knew how many meds it takes for me to feel this way.  

You see, truthfully, I am jealous of the long lives they have already lived. I am envious of the fact that it's taken them this long to get to the point I'm already at. I know that whether or not this is their first visit or their 100^th, for society’s standards in the “normal” world that I shouldn’t be here for at least another 30 years. I don't belong here.

The guy from across the room  looks up from is iPad momentarily and makes eye contact with me. I know what he’s thinking. I know because he does a double take when he notices my wrinkle-free face and full of head of hair. His eyes look alarmed and curious for just one moment and then he quickly returns to his distraction so that I can't read his thoughts. I catch him looking at me again as I write and I know he is completely confused. He is trying to make sense of why I’m there. Waiting on an older relative? Selling pharmaceuticals? Did I get lost on the way to the OBGYN? He pretends to scan the room but spends too much time sizing me up. I smile at him and keep writing. 

I know that his thoughts and assumptions won’t matter two hours from now when I finally have my echo results or when I go home tonight and have to pop 5 more pills just to prevent the side effects of the 8 I took this morning. 

What matters now is that THIS, this waiting room, these looks, the pills, the pain, the endless doctor’s visits, blood work and cancer causing procedures are MY normal. And I know that even though I shouldn’t be sitting here for another 3 decades that I am. I know Bill Cosby isn’t going to walk through the door of the waiting room and cure me with a bowl of Jell-O and a laugh. And all of that precious knowledge is what makes the fake flowers and the gaudy green lounge chairs seem all the more ominous. Ominous because my sitting here is not a choice, it is a necessity that is now my norm.

Yet behind the looming what ifs? and how comes? and why nots? I will choose to find laughter and joy. I will choose to love. I will choose to put on an old sweater, cock my head to the side and in my BEST and most HORRIFIC Bill Cosby voice offer you a pudding pop and a smile in exchange for one moment of peace and the hope of survival.

(Note: If you haven't seen my Cosby impression...ask me to show you! lol)

Down the Rabbit Hole

   (New publication...get your copy today on Amazon.com..yes a SELFISH plug! lol)

“My dear, here we must run as fast as we can, just to stay in place. And if you wish to go anywhere you must run twice as fast as that.”

― Lewis Carroll, Alice in Wonderland

This week, I struggled a great deal with what to write about for today. I thought about what mattered to me and to others. What I wanted to stay what experiences I wanted to share. Did I want to be funny or insightful? Did I want to give advice? I would decide on one thing and wake up in the middle of the night and think of something else, something "better."

Yesterday, however, I had a long conversation with one of my closest friends about a health issue she is having. When I got off the phone, I realized that that was the 4th conversation I had had like that in less than a week. At first I thought, "Wow, this is great! I am developing a great support system. I have people who understand illness, who are suffering, LIKE ME! I can help them, they can help me. We understand each other!"

And then it hit me like a sack of bricks: Why are so many of us, women I mean, in our young age getting so sick? Why is it that all of a sudden every beautiful, talented, overworked, under-appreciated woman who is on her way to "the top"  have Lupus, or Generalized Anxiety Disorder, or Sjogrens, or Celiac Disease or hypo/hyperthyroidism? Is it simply the "new car syndrome." You know, like when you buy a new Lexus (yeah, right) and all of a sudden you see it EVERYWHERE? Is that what it's like with illness too? 

Regardless, I realized that instead of being "happy" that I had a strong support system, I felt sad even angry that so many of us women in our mid 20s to early 30s were getting or maybe even making ourselves so sick. 

I started to think about what all of these women that I had just met or have known for years had in common and it almost made me title today's blog: Suburbia, Stress & Success. Lol, but I felt that was too general and I wasn't 100% sure that all of us came from the burbs. 

Anywho, what we DO have in common is our need to achieve. To be the best, to strive for more and to never stop. Our common thread is that we stress. We stress about what to wear, where to go, who to please, what to be. We are all on "go" all day, every day, and like the quote says: running fast and getting nowhere. Running even faster only to miss what is right front of us. 

Growing up, and to this day, I am obsessed with and absolutely LOVE the story Alice in Wonderland. Maybe it has something to do with the sexy Johnny Depp or simply because I can completely relate to her journey. Always feeling like your falling down a rabbit hole, with no time, always late, running into a reality that feels more like an acid trip with confusing directions and quirky characters, and all you want to do is GO HOME. All my life I have been go, go, go, go trying to get.....where?? 

I graduated high school at 17, went to community college that summer, started as a sophomore my freshman year, graduated undergrad in 3 years, a masters 2 years after that, performed in over 30 plays, traveled toEurope, got a job with a 401k, saved money, got married, got published. I reached all of my dreams (with the exception of a child) before I hit 25. But between the job and the publishing, I got sick...and as I kept "succeeding" I kept getting sicker. I wasn't slowing down but I really wasn't going anywhere. Not spiritually, not holistically anyway.  My "success" as defined by society was sealed. So why was I so unhappy?

Ladies, we need to slow down. Hell, some of us just need to stop. Who are we trying to impress? Whose expectations are we trying to live up to? What really matters? Why does the media insist that we have to be Super Woman? Why aren't we ok with simply being ok, with doing the best we can do in that moment? Balance, true balance comes from letting go of things in order to have room for others. Let go of the trivial, of the mundane of the people that add to the stress and bring you down. Doing so will allow you to make room for the good stuff. 

I have recently come to one conclusion: 

The journey of our lives should be determined by the legacy we are trying to leave behind. 

In other words, after all is said and done, what will you leave for others? What difference or impact in the lives of others will have mattered? How will you live on in their hearts and minds?  Everything else, all other stress is second rate. Notice, I didn't say what difference in the "world" are you trying to make--come on people that's way too stressful!!! Lol...my life got better when I stopped trying to change the world and just focused on one person at a time(including myself- I come first, otherwise what good am I to others?) 

I now know that my legacy involves my spirituality, my art, my students and my family. And that's it. I am successful, I have been successful, employed or unemployed, with a degree or without. (So people, stop giving me crazy looks when I tell you I quit my job!) If I focus my efforts on those things, nothing else matters. I know we all need jobs and money and a house and food to survive. I get it. But we also need to learn to trust that these things will be provided for us if we're on the right journey to begin with. 

Stress kills. Period. It manifests itself physically, emotionally, and mentally. Is it inevitable? Probably not, but as I've said before, how you react to it can change your life. Stop trying to be successful or to be it "all" and just be. I won't tell you now, to go stop and smell the flowers. Instead, I will tell you to pick the flower, put it in a vase and hand them to someone special. You'll feel better, I promise. You'll be one step closer to getting better.