Like my header quote reads: "It's never the changes we want, that change everything." For better or for worse, life throws us curve balls. We have a life plan that goes awry because actual life happens. One moment we're coasting along headed in one direction, and suddenly life slaps us (or beats us with a dirty stick) and changes the direction and the journey we're destined to be on.
I was lucky growing up. I didn't have any major plot twists. I had a life plan and I was able to stick to it, all the way through college. But on the day before graduating with my M.Ed. I was diagnosed with Lupus (later to realize it was actually Scleroderma as the symptoms progressed).
This completely rocked my world. All of my future dreams and aspirations seemed impossible. What did this mean? Who was I to become now? WTF? Over the first few months I suffered through depression. Gained weight. Shut out all my friends and family. Living became almost impossible. I was burdened by chronic fatigue, joint pain, skin tightening, acid reflux, insomnia, medication side effects, constipation and diarrhea and the list goes on...anything and everything was happening to me, and I couldn't stop it.
My body was betraying me. I was told there was no cure. I was told it was chronic. Chronic meant forever. I was only 22, "forever" is a long time when you're only 22.
The predictability of my life suddenly vanished. I didn't know how I would feel or what I would have the energy for from one day to the next. It took me two hours a day just to shower, get dressed, comb my hair and "look normal." Every motion, every step required a 10-15minute break afterwards. It was debilitating. It was frustrating. And back then, that Jasminne refused to ask for help.
I still wanted to be who I was. I still expected my "young" body to do as I wanted, but that only made matters worse. Shortly after graduation, I quit the wonderful full-time job I had at a non-profit to pursue my artistic endeavors. I wanted to be an actress. I wanted to be a world-renowned slam poet. But my symptoms continued to progress and working multiple part time jobs was stressful on my body and didn't give me the health insurance I needed. I struggled to make ends meet and fell into an even deeper depression because I couldn't follow my dreams with the same "gusto" and passion that I had before. But I was determined to at least do what was always my plan B. To succeed at my backup plan if/when acting didn't work out. I set out to become the best teacher I knew I could be.
I eventually found a teaching gig, teaching theatre. I lasted 2 years at that job before my body and mind gave out and I was forced to work part time for a year to recover. (Luckily I was married by this time so health insurance wasn't an issue) After a year of part time teaching I went back to teaching full-time. That. Was. A. Mistake. It was a great year, but 2 months into year two at that school I ended up in the ICU with near heart failure. (There were many other things that lead up to the ICU incident you can read more about it here)
I spent some time at home recovering and reflecting, and there was no doubt in my mind what I needed to do. What I was being called to do.
Even though my body did not have the strength to teach for 8-10 hrs a day, eve though I couldn't act and perform like I used to, I realized that there was one talent I had that couldn't be taken away: I could still write. I threw myself into writing poetry and memoir and blogging. Even on days when my fingers swelled and my knuckles ached, writing saved me. I quit teaching all together and spent the next 6 months compiling stories and poems for my first memoir. (About growing up Latina)
Writing gave me the serenity to accept my condition. Writing gave me the courage to speak up for myself when others wouldn't listen. And writing MY story, gave others the wisdom about how to better manage their illnesses and chronic pain. The response I got from others who related to what I was going through was overwhelming and liberating.
I realized that I still did have a purpose. It wasn't the journey I thought I'd be on, no, it was better. I was given the gift of language and of writing. The ability to tell my story so others could find understanding. I knew my life was not going to go as planned, hell it was already completely different. But I trusted, that it would be what it was meant to be. As long as I listened to my body when it cried for rest. As long as I listened to my heart when it cried for peace.
A poem that I wrote a few years ago about this "plot twist" aka "my re-birth."(Video of me reading it linked)
The doctor picked up a pen and a pad
And prescribed pain medicine
“You have scleroderma, so go home
And rest. Any questions?”
And he walked out of the room.
Where do I begin?
Where should I go?
What will happen now?
He’d placed a knife in my chest
That I couldn’t pull out.
So for the next 4 years I slowly
Bled to death.
Cold brittle bones breaking
With each bending motion.
Muscles made mush
By too much movement.
Frozen fingers feeling fragile
At the touch of an ice cold glass.
Solemn sleepless nights where I was left
Longing for something more
Than an idle prayer
Regurgitating remnants of food fragments
That crept up my esophagus
And burned my already tattered trachea
As I desperately tried to nourish myself.
But my own body ate away at me
Left my stiffened skin inexplicably incapacitated
And all I could hold onto was my mortality
And my memories
I reached for a bottle of pills
That beckoned and I took just enough
But wearily wondered what would happen
If I took just a little bit more
But the thought of my mother
I drove past a locked empty church
That told me “Jesus was near”
And I contemplated running the red light
Into oncoming traffic
But my phone rang
And my husband’s voice
I drank another glass of wine
And walked to the medicine cabinet
And this time, staring sullenly into the mirror
My own rejected reflection
What was I doing?
Who had I become?
Where was I going?
I pushed the knife deeper into my
Chest, until I couldn’t feel it
And with my tears I healed the wound
That would leave me scarred.
I got up
Leaving most of myself on the floor
And began walking in a new direction
I was not who I had been
I was not going to become who I
Wanted to be.
But I was born again.
And I would learn to eat again
Like it was the first time.
Savoring delicious delicacies and
Enjoying every bite.
I would learn to see the world again
As it was meant to be seen
Like a child: with wonder and not with woe
I would use my brittle bones and
Meager muscles to their full capacity
And understand that it didn’t matter
How long I could use them
But how well I had used them.
And I remembered my memories
But I didn’t long for them
And I understood my mortality
Because it allowed me to live again
And the dark places still exist
And the taunting thoughts still threaten
Because I have scleroderma
But it doesn’t have me
And hope and understanding
Came to me through an incurable disease
That taught me how to live