Am I Jaded?

Death is a part of life. I've seen a lot of death this year and I think it's made me reconsider life. What I mean by that is, I need to take it easier. What are we all stressed about? Like REALLY? The end is the same for all of us, so what are we really freaking out about? I just want to be happy. I wanna have some cute babies. I want to create some art. And then, I want to die. And guess what? The world will continue on without me, and that's ok because it's supposed to. I'm not Shakespeare, and I have no desire to be. I just want to enjoy my brief moment in time and to hell with the rest of it.

Does this mean I'm jaded? If I take life too seriously, is that not jaded too? People have died all around me this year, at work, in my family, friends, friends of friends etc. And I'm still breathing, working and living and so is everyone else around me. So I ask myself now: what am I working so hard to achieve? If the end is the same for all of us?

Am I jaded?

Or am I finally beginning to understand...

Love is not a victory march

"I think I can, I think I can, I think I can..."

The first step to being successful (at anything) is to begin loving yourself.

If you don't like who you are or the things you do, then you will never succeed (at anything). You will constantly judge yourself, be too hard on yourself and not give yourself enough credit for the things you do right or well. I have learned this, the hard way over the last two years. With scleroderma, to love yourself or not love yourself, really isn't an option. The minute you stop loving yourself, stop taking care of yourself, that's when the condition threatens to get worse, and therefore, it is NOT an option.

For me, loving myself means taking time off when I need it, working out when I feel up to it, eating better (though that's been hard), sleeping (alot) and being proud of all the little things I'm able to take care of on a day to day basis.

Have I had to let go of many of the things the "old me" used to do? Of course, but that's all part of the process. I have also learned to do things for me, not for others. In the sense that I don't have to please anybody, nobody has to give me a pat on the back and say "good job" for me to believe that I am truly doing a "good job." I don't need that anymore because I believe in me and the great future that lies ahead no matter what I choose to do or not do.

I thought that Scleroderma had robbed me of my dreams, and I still feel that some of them may not come to fruition, but my success as a human being is not dependent on that anymore. Dreams are dreams for a reason, they give me something to reach for, something to look forward to and my success is based not having achieved those dreams, but on the effort and hope I give and have to at least TRY and make them happen. (Can I get a Hallelujah?)

"If the road is rough/And the track is tough/Thinking you can/just ain't enough."

-Shel Silverstein

Trying to Breathe

I. am in. a constant. state. of. anxiety.

I couldn't even begin to tell you why. It may be the caffeine I've been drinking, stress at work or a combination of both. I'm not really sure, but this past week I've felt like I can't breathe and I'm constantly trying to catch my breath just feel less jittery.

And I'm having nightmares too. Really strange ones about running, and over eating, and yelling at students. Ughh, even my dreams are stressful!

Maybe all of the fears I've been suppressing are surfacing and God is telling me to deal with them. Whatever it is, it's also causing A LOT of digestion problems. (And that's all I'll say about that. :) )

And here's a poem for your thoughts. May you have a belssed Friday night and in spirit, join me for a glass of wine and some down time with a loved a one. (Be still and be well)

The Justification for Infidelity is Always a Lie

I’m drowning.

This city is sucking me up.

I’m being choked by

Desire, greed, anticipation and lust.

I can’t scream.

I’m barley clawing my way around.

I want to smoke, drink and love

At leisure.

But I’m stuck.

Flipping and wigging out.

There’s a burst of sound.

An explosion of regret

That lingers in the air

As an action takes the place

Of a moral.

And I forget yet again,

What it is I’m doing.

People

I have suddenly come to the realization that there are essentially only three kinds of people in the world.

1) Those that want to change themselves.

2) Those that want to change the world.

3) Those that want to change lives.

I believe, that for better or worse I fall into the third category. I've discussed this somewhat before, I like to serve others, hence the reason I am a teacher. But I also know and realize now that category 1 and category 2 are much more difficult than number 3 believe it or not.

Having spent the last three years in the classroom I know that changing a life can be as simple as a hand on a shoulder, a smile at the beginning or end of a day, a truthful:"I understand," or the introduction to a book or author that speaks to a child.

One day, four years ago, as I was leaving a poetry reading (one of the most memorable moments of my life) that featured African American, Hispanic and Jewish poets from around the city at the Holocaust Museum of Houston, a young black girl approached me and changed MY life in an instant as much as I had just changed hers when she said: "You were like amazing, and when I grow up, I want to do that, I want to be like you, I want to do what you just did cause it was so awesome."

I knew then, that I had accomplished even more than what I ever set out to and I still do on an almost daily basis. Do my students tell me that I've changed their lives? No. Do my students show how much they appreciate what I do? No. But do I really need them to? No, surprisingly not. I wake up for them every morning. I play volleyball and run laps with them even though I regret it later because those simple gestures could be a life changing moment for them or for me, and I'm willing to make those minor sacrifices.

I don't think anyone can single handedly change the world or change themselves for that matter. It takes people, like the domino effect, one touching the next and the next and the next until you've all fallen, hopefully into something wonderful, something "awe-some," something eternal and beautiful.

I am on a mission, a greater mission than myself and I have to do what I have to do to reach it. Will you join me?

I. Hate. This.

Have you ever gone to the gym and did a full body workout? Then proceeded to run a marathon followed by a couple of laps in the pool? My guess is probably not, but if you have, then I tip my hat to you, because you know what it feels like to be me all day, almost everyday. I have never done any of those things either, but with Scleroderma, it sure as hell feels like.

I have muscles in my body that ache, that I didn't even know existed. I ran out of my pain meds yesterday and didn't get to the pharmacy in time today so I'm in a lot of pain, all over. Not in enough pain to not be able to do things (I was able to do like four loads of laundry...woohoo) but just enough pain to piss me off and make me depressed. My knees are acting funny, my fingers hurt which they hadn't in like almost over a year, and I got really tired walking from the front door to the car earlier today. Blah.

Looks like I should just get over the idea of going into remission anytime soon if all the pain and discomfort comes back after just one day of no meds. GRRR...so frustrating. I'm sure some of the stress from work and personal life don't help my cause either but I really wish I could count on SOMETHING to be constant and dependable. (sigh) No more bitching, it is what it is.

I ask for Serenity. Courage. And wisdom. I can't change the fact that I have Scleroderma, but I CAN change how I feel about it and how I deal with it.

I feel stronger inside already by sharing my stories and my poetry. I attended an arts show this weekend where I was able to read my poetry and even impacted some people so much they bought my poetry CD's and picture poetry. It felt good to put myself out there and take a risk like that, and I'm really glad people were able to appreciate it and relate to it. That alone made for a successful weekend, even if today I felt practically useless.

I do believe (even if falsely) that one day this will all be some distant memory that I can look back on and remember as a time of spiritual, mental, emotional and artistic growth. It is definitely shaping the woman I am to become I just hope that in the process it doesn't manage to consume me.

(Another version of "me")- excerpt from memoir:

PEEPING TOMS

There is a woman who opens her drapes every morning to let the sunshine in. She unlocks her back door and opens it to hear the street sounds and feel the breeze on her unwashed olive brown face. Her hair is always a mess, usually a large afro that could be sexy if society allowed it to be. She always smiles at the trees and looks around outside hoping someone will notice her. She leaves her drapes open almost all day, even when it’s cloudy. Her silhouette passes by the back door ever so often, and she pauses momentarily by the window, takes a peep and truly believes that someone is looking in on her. She smiles at the possibility of being watched. Most days, when she showers, she forgets her towel in the other room and has to run across the open window in the nude. This daily routine excites her and she is sure that at least once, someone has caught a glimpse of her breasts. She always runs back across the room, laughing, with a towel covering only a portion of her body, on purpose. When she finally returns to the window clean and acceptable, she has a conversation with the wind and sighs, unsure of where the day will take her. She doesn’t know yet if she will drink coffee this morning or eat an apple instead, but she knows she has a choice. In truth this woman is lonely, but this woman is beautiful, and this woman is free. On Tuesdays, this woman is me.

The Road _________ Traveled By

My students performed this evening. And every time any of them do, I always get butterflies in my stomach and I remember why it is that I do what I do. I am proud of all of their accomplishments no matter how stressful it was to get them there, because deep down I know they'll remember it for a lifetime.

These feelings are what help get me up in the morning and keep me going through the day. Doing things (especially art) for others is what I live for, it's why I started this blog, so others could learn through my writing, my poetry and my art. Although it's all sometimes hard to manage, my body aches and I get tired really easily I know that in the end, (whether it's my end or theirs) it will have meant something and will have made a difference.

Even with all this positivity, I have found myself at a crossroads. I love what I do, but I also love who I am. And I cannot continue to be who I am successfully if I continue to exhaust myself doing what I love to do. In other words, if I don't slow down soon, it might all come to a crashing hault. I have to take care of myself or I won't be around to help others, but sometimes, helping myself is draining, hard and honestly quite depressing. I ignore me because others bring me more joy.

I have big hopes, big dreams and an unsure future ahead, I am always asking myself: do I make the most of everyday because one day it won't be this easy? Or do I stop and smell the daisies and the roses because it really is that easy?

An excerpt from my memoir:

Sandra says she only writes on the days she doesn’t put on shoes.

Sandra also says that art should save lives.

I am therefore caught in a paradox.

I must wear shoes in order to go to work, to pay my bills and to feed myself. I am a teacher, I teach theatre and I teach hope.

I don’t know if I have saved any lives yet in my theatre class, but I do know that I have helped change some.

On the other hand, if I gave up my day job to write like Sandra, one day, maybe my written words will save a life.

It is time for me to decide what is more important: wearing shoes or saving lives?

Temporarily Neccessary

A friend once told me, when I complained about the side effects of the meds I was taking and trying to reassure myself by saying it was only "temporary," that it was not temporary, it was neccessary.

And of course, she was right. In order for me to feel better and to function, the meds are neccessary and neither I nor my doctor's can truly assure me that it is only "temporary." Because truthfully, chronic means, well pretty much forever. Sure I can hope to go into remission, but not soon because I'm still in the early stages of this thing and only time will tell what's in store.

I bring this up because I'm having a hard time dealing with how I've changed physically because of the meds and the sclero. My skin is dryer, my face is fatter, I have no upper lip to speak of and I'm constantly bloated which makes my tummy stick out. I hate to look at this new me in pictures because I don't feel beautiful anymore and it kinda sucks. See, this is the part I haven't chosen to accept yet, still hoping I'll go back to looking like my old self, but even that's not certain.

I try to convince myself that it's better to look this way and feel better than look how I used to and feel miserable, but that only lasts about half an hour before I'm back to hating my "new" face. My husband helps though, he tells me I'm beautiful at least once a day, and I really can't ask for more, but we all do. Human nature I guess.

I do however know how blessed I truly am, and am trying each and every day to appreciate those blessings and not take life for granted. I am exploring new artistic endeavors that keep me motivated, I am committing to spending more time with loved ones, and I am allowing myself to be okay with the few things I can accomplish each day and not feel guilty for those that I don't. Life is brief, our time here on Earth should be spent with family and friends and our peace of mind and spirit should be our number one priority. Without peace there is nothing and I am on a daily quest to find and keep that peace within my heart and with those around me.

"The tragedy of life is not that it ends so soon, but that we wait so long to begin it." -Anon

I have finally begun.

I'm Tired

Trying something new....going to summarize in simple sentences EVERYTHING i want to say but don't have the energy to go into details about.

1. Mourning the loss of a coworker.

2. Celebrating my sis's graduation and mother's day this weekend.

3. Muscles ache real bad.

4. Annoyed by my students who refuse to listen.

5. Excited about my upcoming arts projects.

6. Missing my husband, whom I should be seeing shortly.

7. Wishing I could get pregnant because I desperately want to but doc says not now. (too many meds)

8. Dealing with painful heart burn.

9. Contemplating my own mortality.

10. Needing a foot rub, a cupcake and a good cry.

Can I Be Brief?

FACT: Scleroderma isn't something you prevent. It's something that happens.

-JM

So many topics, so many things I want to say and don't know where to begin or which matters most. I guess I can begin with the most basic, how am I feeling today? Happy. Wow, what a relief to be able to say that and mean it.

It's taken me almost a year to recover from my stint at the hospital last July, and for those of you that don't know what I was there for, feel free to email me privately...not that I'm keeping things from anyone, I'm all about openness and honesty here, but that story is for another time. Today I just want to share that this past year has been an incredible journey for me. Not just physically , but emotionally, mentally and spiritually as well. I have changed as a person, and for awhile I really missed my old self. And I mourned for that self I used to be, but not anymore. I'm really beginning to love who I've become even with all the limitations. (Although I hate to say that I have any because by believing that I do, then I make it so)

For the last month now, I have felt almost totatly better, for the first time in eleven months. My spirits are high, my productivity is through the roof, and I've even begun to set new goals for myself that I think I'm actually going to reach. (Which didn't even happen pre-scelero) So, YAY for me! It's quite amazing what doing things for others can lead you to accomplish. And I should know that since I'm a teacher, I've made a career about serving others. But truthfully, by starting this blog, writing poetry and creating art that is meant to share my story with this illness and wanting others to know and understand what I and so many countless others go through, has really pushed me to do the things I've been avoiding since I was diagnosed three years ago.

You see, when I force myself to write on here, or to work on my poetry I am forcing myself to face this thing head on. I can't continue to deny what's happened/happening to me, and actually I don't want to. I want so much more out of life because I know how short and uncertain it really is. I face my mortality every morning when I feel the stiffness in my arms, abs, and legs. I understand the power of God and the weakness of my own flesh when I can't make a fist to get my blood drawn properly. And yet, I see how happy I've become just in the last few weeks because I've chosen to accept it all. You see, for a long time I thought acceptance was something you "came into" and that your mind and heart felt "all of a sudden," But it's not, it's something you choose, everyday it's a choice, with your actions, your thoughts, your words and your spirit.

And if all it takes is for me to be happy is to face some demons that I can bribe with a cupcake and a few words of wisdom then I say "bring it on."

My Bowels

I have a love/hate relationship with food. I love food, and it hates me. What I mean by this is that if I could, I would everything that is "horrible" for you because I love to eat. I love pizza, ice cream, cake, pasta, potatoes, you name it. If it's full of fat and bad for you, I want it and I enjoy it. However, this feeling of joy is fleeting, because shortly after I've enjoyed every morsel of food I have consumed I am plauged with heart burn, gas, bloating and indigestion.

This may seem like TMI for some of you, BUT if I wish to be honest and truthful with you then I can leave nothing out.

My doctor says that the indigestion and bowel problems(a horrible cycle of constipation followed by diahrreah followed by constipation....)caused by the Sclero lead to bacteria to grow which makes matters worse. I hate feeling crappy after every meal. And lately it's so bad that I could eat a bowl of fruit and some water and still feel misearble.(Even on the meds!) For someone who loves food as much as I do this has become a pretty shitty situation. (No pun intended)

So, this is what I live with on a pretty normal basis. My desire for instant gratification by a slice of pizza is instantly stifled by acid bubbling up in my esophagus and burping that can last for over an hour. It's another symptom I'm still trying to manage and who knows how long it will take before I finally have the will power to give up the foods I love, but for now, Tums is my secret boyfriend and Priolec my muse. (Bring on the wine and the chocolate, I'll deal with the aftermath later)