Tuesday, July 5, 2016

Reentry

I know I walk in and out of several worlds each day. - Joy Harjo

So this was not the post I was intending to write, but it's been lingering on my mind the last few days so I need to get it off my chest. (My trip to the DR will have to wait, for now). 

Last week I went in for my third round of infusions (6 month follow up) and next week I will do the fourth and hopefully final one. It was just as easy and smooth as the first two and the only side effects were drowsiness and hot flashes for a few hours afterwards. Easy peasy. 

But after my return from the transformative experience that was VONA(which these infusions made possible), I've had a lot on my mind and have been in and out of really high highs and really low lows. 

I know that just one year ago, my body would not have been able to handle the physical work that it took to make it through all the walking, the heat, the long days, the poor sleep, and the emotional exhaustion that was VONA. And while it makes me very happy and very proud of myself that I DID actually survive without any major incident (aside for sleeping for 16 hrs straight when I got home), knowing that the state of "remission" I'm currently in is and may only be VERY temporary keeps me grounded, and scared, and humble, and cautiously happy. 

You see, these infusions have granted me a temporary visa into the land of the well again, but much like our own troubled immigration system in the US, I know that this visa can be revoked at any time. If I make the wrong move, eat the wrong food, lower my dosages just a milligram too much, stress too often or hell just because my body decides to say "fuck you" and rebel again...I could be thrown across the border into the hell that is chronic illness and pain. 

This knowledge has made my "reentry" into the land of the well a bit hard to swallow lately. The longer I feel "normal" again, the more I worry about relapse. As more and more days pass where I am pain free, the scarier "real" life becomes. The more the questions haunt me:

If I feel normal, does this mean everyone expects more of me now? (Like the "old" Jasminne?)
What if I can't live up to the dreams and goals I've set for myself now that I have the strength to try and achieve them?
What if I succeed at this?
What if I fail?
Will this be the time in my life where I will look back and say: "Well at least 31 was a good year"?
What if I forget what it feels like to be sick?
Will I be strong enough to handle a relapse after so much time feeling well?
Why don't I hurt anymore? Is something ELSE wrong?

These questions and doubts nag at me day and night. One minute I am enjoying all the wonderful moments, people, and experiences that have entered my life in the last year, and the next it feels like I'm suffering from some form of PTSD. I get anxious. I cry at nothing. I stalk chronic illness and chronic pain twitter feeds to remind myself that I am only one missed pill away from being where they all still are again. (Seems torturous I know, but when all you've known for 8 years is pain and illness, you tend to find comfort there)

You see, everyone talks about "a cure"...talks about the glory of "remission"....just like prisoners talk about "being free"....but no one, not doctors, or nurses, or even pinche therapists talk about reentry. How does one transition back into the land of the well, back into normalcy? 

I don't know how to live a care free, spontaneous life anymore. I don't know how to make plans whole-heartedly and just jump right in. I live in a constant state of "maybe." I live in a constant state of anticipating and preparing for the worst. 

To better understand where I'm coming from, I'll put it in perspective. Lupe and I have been married 7 years. If all continues to go well, and I continue on the path to remission, this will be the first summer in 7 years where I will not have ended up in the ER or hospitalized. THAT was MY normal. 

I've been writing about my "new normal" for the last 6 years if not more. Trying to convince and accept myself that normal was just a setting on a dryer. Normal is subjective. And that I was ok with chronic pain and illness as my normal. 

And now (for the better), that normal is gone (for now). And I have to readjust again. I'm not complaining about my good health, please don't misunderstand me. I am incredibly grateful. But I'm also a realist and I also know that there is no handbook for this transition. That I worry day in and day out that I will do something to sabotage my good health because being in pain and being sick is all I have come to know. 

Dreaming again is hard. Dreaming again is scary. Acting on those dreams is absolutely petrifying and often debilitating. 

If my body hurt all over and was falling apart, I wouldn't be expected to try. Getting dressed every day and brushing my teeth would be good enough. Now that I can push myself to do more, I want to push myself more, but of course I worry that at any moment it will all be stripped away again. (Realism, not pessimism) 

I'm trying to focus only on the now, like all the good philosophers, yogis, and smart people say to do.I guess I've just had a lot of time to think lately and that is what has been weighing on my mind. 

Yesterday was the 4th of July and all I could think about was my state of imprisonment. I am shackled to a body that has been temporarily set free from pain, but am also fully aware that these diseases I carry within me are a life sentence I will inevitably have to keep facing. 

Monday, June 27, 2016

Wound Care

"I've started dreaming in Spanish, which has never happened before. I wake up feeling different, like something inside me is changing, something chemical and irreversible. There's a magic here working its way through my veins. There's something about the vegetation too, that I respond to instinctively-- the stunning bougainvillea, the flamboyants and jacarandas, the orchids growing from the trunks of mysterious ceiba trees..." -Cristina Garcia
My VONA Fam

Wound care, I've been doing it all wrong these last few years. I've been treating infected cuticles, bones and finger tips with saline solution, bandages, surgeries, pain killers and warm gloves. But this past week, I realized that wound care begins on the inside.

I knew this. But I didn't really know it. Because the thing is, how can you care for a wound you didn't even know existed? This past week at VONA I became woke to the wounds I had buried so deep I had convinced myself they didn't hurt. But the reason they were buried was because they hurt the most.

I am an open book to anyone who knows me. I will tell you everything about my chronic illness and pain, my miscarriage, my surgeries, the pills I take, how brown and black I feel, how alone I feel as an Afro-Latina in Texas, how much I love my parents and my sister. I laugh off my relationship with my brother. And we laugh when things are uncomfortable. This past week, I was made to confront that discomfort. (And that's all I have to say about that)

A few weeks ago...
And because of that, something truly wonderful happened (aside from the internal healing that began when I wrote the "real hard poem")...my finger (the one I've been trying really hard to save from amputation)...started to scab. I'm not kidding.

Just the week before, while in the DR I was really concerned that the finger was headed back down the ugly rabbit hole of infection and amputation, I just couldn't stay positive when progress wasn't being made. However, when I woke up Saturday morning (I slept for an hour before getting up to catch a 6am flight) the wound actually started to look and feel like a scab that was healing.

That is no coincidence. The poets in my VONA workshop
helped me care for a wound I didn't even know I had self-inflicted. They treated that wound with love, and compassion and understanding and care. And in doing so, the physical wound on my finger has finally decided to heal.

Now
We are only as sick as our secrets. I finally shared one of mine with others. And in that sharing, these people these poets became my family and that space, wherever we all are, became another home.

I am not ready to write about the full extent of my VONA experience, and I don't know that I ever will. But I know that I have been changed. As a writer, a poet, a woman of color, and a survivor. I know now how to care for wounds both big and small and I have a team of caretakers willing to help me through it.

Monday, May 30, 2016

The Write to Heal Series

It's been almost a month since my last post! So sorry..but you know...life. So instead of dropping bombs or getting all heavy I thought I'd share what's been keeping me from blogging...my extremely busy writing life! Here's a recap of all that's gone on since the last Write to Heal Series.

1. Residency & Workshop Acceptances: I have the great pleasure of announcing that I was accepted into BOTH the VONA/Voices Workshop for Writers of Color at the University of Miami AND the Macondo Writer's Workshop for Latino Authors!!!

I am thrilled, scared, nervous, intimidated and just ready to be surrounded by mi gente. I am really looking forward to getting feedback on my work and just being in community with inspiring writers. It definitely means that I will be very busy this summer, so blogging may be put on hold, but as soon as I can get back to this page and share with you all that I learned and experienced, I definitely will.  

2. Publications:  If you've been keeping up with my sporadic posts, then you know by now that my creative non-fiction piece Shades of Red was recently published by the University of Edinburgh's Dangerous Woman Project. (I just thought I'd plug it one more time) It was great to be included in this project and hey they even paid me a small honorarium...so...WINNING!

Trevor, Me, Lupe, Kayla & Alvaro @ NP Showcase
3. Performances: As you probably remember, April was National Poetry Month so I was very busy. To wrap up the month I read and sold over 19 copies Island of Dreams at the Nuestra Palabra 18th Anniversary Showcase. It was a long night but it was amazing. All the old and new NP folks gathered for a night of literature, film, art and fun. It was great to see old friends and to be able to make new ones.


Also, I had the privilege and honor of being asked to read at HCC central for the student creative writing group. It was a great experience because the students asked really great questions about what it's like to be a professional writer...and I just kept thinking to myself "I'm still trying to figure it out too!" Everyone was very gracious and I always love reading on college campuses because the students are like sponges and really enjoy my work.  There were even a few Afro-Latinas in the audience who approached me afterwards and thanked me for writing the work that I do.

It's been over a month since that reading and just last week, the young lady who booked me for the even sent me an email...(one of the few pieces of "fan mail" I've ever received and it almost made me cry!)...She wrote:

"I just wanna say that I just finished your book and it resonated so much in so many ways!! Even though I'm Mexican, there's so many things that I went through just like you said. I wanna thank you for writing this and for sharing your art with the world. I just came back from Barnes & Noble trying to find a new book to read after yours but I came back empty handed. I got that feeling you get when you just read a great book that nothing comes close after that. I seriously can't wait to read more from you! I loved your performance that day at HCC and your book!

Thank you thank you thank you!!!"

Aaah! How sweet! I was so excited to read this and it reassures me that my stories matter and that they resonate with the audience I hoped it would.

Lastly, the hubs and I had the wonderful and rare opportunity to share the stage as the featured poets at Inprint's First Friday Reading Series earlier this month. It was a truly rewarding and fun night. He and I took turns on the mic and even read a piece together (which never happens). I love what we do and I love when we can do it together.
First Friday Reading

4. Upcoming Gigs & Stuff: This summer is full of writing experiences and opportunities. I know I will be tired by the end but I know I will also be fulfilled. Aside from VONA and Macondo, I will also be attending my first summer residency at PLU for my MFA. I am currently working on editing my workshop submissions and am again very intimidated and nervous about the process and the experience. But I want to take it all in and just learn from it.
I have also been asked to be the keynote speaker at a Teen Summit for girls in Baytown at Lee College. I have never been a keynote speaker, but they are allowing me to perform some of my poetry and just talk to the girls. I will be working on preparing that later this month.

While I have a busy couple of months ahead, I will have some down time starting next week. Mom, sis and Baby B and I will be taking a trip to the DR to rest and relax for a few days and I simply can't wait! The beach, the sun, the food...I'M READY! I also think it will provide me with the space and quiet to get some reading and writing done before everything gets crazy.

Looking back at the last month and half I realize how truly lucky I am to live this life and to be able to move forward in order to do more. As many of you know I didn't always feel this way and my ailing health often makes it hard to see things in a positive light, but all in all I can say confidently that things are good...and truthfully...all is well.