Monday, August 22, 2016

The Write to Heal: Summer, Summer, Summer Time

At RWW- PLU Campus

"Ocean--/get up. The most beautiful part of your body/is where it's headed. & remember,/loneliness is still time spent/with the world." - Ocean Vuong - Someday I'll Love Ocean Vuong in Night Sky with Exit Wounds 

Aaahh! Ok, so I cannot possibly even begin to capture ALL that has happened in the last six weeks and how I have grown as a person, a writer, a poet, a woman....too much...too much.. but I will try to do my best. (And maybe give a quick health update at the end too)...so here goes..more in depth analysis of these moments to come...for now a recap.

1) Macondo Writer's Workshop

Was a great four days spent in the company of writers from across all genres. I was challenged to write in ways that make me very uncomfortable and about topics that I tend to feel indifferent about (place poems for example). I spent some time building relationships with wonderful writers like Raina de Leon, Sara Rafael Garcia, Monica Teresa Ortiz and Javier Zamora among many others. My writing family grew exponentially because of Macondo and although I have a way of often sabotaging my own happiness at times, (I got really down on myself for being only one of two Afro-Latinas in the whole group, making me feel, as usual, like I didn't belong) I am thankful for my wonderful hubby Lupe who knows just want to say

Me & Lupe @ Macondo
and when to say it to bring me back to reality. Overall it was a great experience made even better by Laurie Ann Guerrero's strong leadership, passion, kindness and attention to detail. Also...Tim Z rocks and I love his facilitator skills! I will definitely be back next year if they'll have me and I'm really looking forward to helping out more in the future in any way I can.

2) CantoMundo (as a guest, tag along)


Juan Felipe Herrera
AAAhhh!! Is all I can say. Fan girl. Fan girl. Fan girl. That's all I was able to do all weekend. I met Elizabeth Acevedo for the first time in the flesh and it was like reuniting with a long lost cousin. She is a beautiful poet and soul. I also sat front row and saw Carmen Tafolla and Poet Laureate Juan Felipe Herrera perform their work. Along with all the other talented poets that performed, the weekend was truly magic.
I was also able to share an Air BnB with two of my favorite people now Yesenia Montilla(who is everything!) and a new sister Denice Frohman (whose extent of fandom I didn't realize until she kept getting approached by random strangers in Austin). We had a blast hanging out, telling stories, talking politics and going to the Canto Mundo readings with all the Canto Mundistas.

Me, Liz, Denice, Malcolm, Christina, Lupe
I realized what a great community the Canto Mundo family is and I hope that one day I can join them officially.  (Lupe, you were right. There I said it.) Their application opens September 1st and hopefully by October I'll have a group of poems that I can deem "fit" enough to send them. (Even though I'm struggling with calling myself a poet these days- that's a topic for another day)

3) Tintero Readings

All I can say is, I think we made history! I was able to open for Malcolm Friend and Raina deLeon at Inprint house in late July and I'm pretty sure it's the first time the Houston literary scene has had that many Afro-Latinx writers in one room together. :) I felt so blessed and excited to be sharing the space with these talented poets (CantoMundistas) and I only hope that they can come visit us some day soon to recreate the magic.

Tintero Reading Flyer 
(Side note, La Casa Mendez will probably go down in history. We've had over 7 famous or soon to be famous writers and poets stay at our house in the last six months...so I think our house qualifies as a historical landmark..or will one day in the future, including all those in the pic on your left!)

4) My MFA Journey-Rainier Writing Workshop

This should really be a complete blog post by itself. But, I'm going to try and condense it here for the sake of brevity. And because, in the greater scheme of things, the smaller details don't matter much anymore. So here's what does:

A) I am THE ONLY black/Afro-Latina in the ENTIRE program (including faculty). This was a bit of a shock. I knew the program would not be super diverse given the fact that it's in Washington state. However, I didn't realize there would only be one other African-American in the program, who graduated this year, making me THE ONLY ONE. Once I let that sink in (took a couple of days), and I realized the heavy burden I was to carry, I decided to carry it with pride and just do what I do best: poet and write.
RWW Swag

B) Writing workshop sessions were actually the least of my worries. I had a great time workshopping my pieces and listening to feedback. It was really enlightening. There was one moment of anxiety that I will not get into here, but I was fortunate enough to have the support of the MFA director who talked me through it and supported and understood my position.

C) I felt very fortunate that the writers of color in the program were able to come together and talk about the community and how we can work together to make it a safe space where we can grow and learn as writers and as people.

D) I met some amazing people that I am really looking forward to becoming lifelong friends with.

E) The campus is lovely. The weather was a nice relief from the Texas heat and humidity and I'm looking forward to exploring more of Seattle (not really Tacoma) when I go back each year.
PLU Campus

F) I got a great mentor, who is aware of my desires and needs as a female writer of color and I'm really excited about all the reading selections she has chosen for me so far. I am a little nervous about generating new work each month since she wants me to focus on new work and not my current manuscripts (which is fine!) I just hope that the new work is genuine and that I don't fall into the trap of "writing for school" instead of for myself.

Performing at RWW Talent Show
Overall it was a good first residency and I learned a lot about the process and about myself. I even got a chance to do some of my spoken word, folks loved it and even asked me if I wanted to sing in the RWW band next year! lol, I'm not much of a singer but hey YOLO, I'll try it! I'm excited about what grad school can offer me as a writer and I'm looking forward to the next three years.

5) Health
Is good. Protein levels down. Kidney function is good and stable. No physical pain. Started working out. Trying to eat better. There is a fear of osteoporosis thanks to years of prednisone use, but I won't know for sure till later this week. So say a prayer and light a candle that my bones aren't completely ruined for life.

I'm still on all the meds, but we are hoping to lower things as I continue to improve and remain stable. I'm down to my lowest prednisone dose EVER 5mg/a day and I haven't had any flare ups so that is a great sign.

Other than that, life continues to move forward. My body is definitely headed in the write direction and for once I feel like my life goals and dreams are too. And yes, it is a beautiful thing. More updates and reflections soon, just wanted to recap the amazing summer that everyone keeps asking about. Now I gotta get back to the daily grind and earn a living.

Hugs and Chocolate!
Love & Light!

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.