Believe & Decide

It is the mark of an educated mind to be able to entertain a thought without accepting it.

-Aristotle

A couple of weeks ago, one of my Afro-Latina sisters asked me for help with a writing prompt she was working on. She wanted some of us to give advice to our younger self. Not our teenage or child self, but rather the person we were one year ago. For me, that was Jasminne at 30...when I expected, that simply because I was in a new decade of life everything would suddenly change and miraculously get better. Wrong.

The advice I gave myself when I responded to her post was mostly predictable, (follow your heart, things won't change unless you do, be kinder to yourself etc.) but one thing I wrote started to nag at me today (in a good way) on this first day of the new year as we all consider our future goals and reflect on the year behind us. The one thing I would tell myself, that I think everyone should think about or may think about at least once in their life is the following:

"Believe that your life isn't worth living, and then, decide not to take it."

Why does this matter? Why is it ever ok to believe that your life isn't worth living? Because I think that at some point in our lives we all feel this way, even if only momentarily. And we have to forgive ourselves for feeling this way, and allow ourselves to feel it. And then, make the empowering choice to not take it. To be on the brink perhaps of the thought or the action and then, take back control. When I decided not to take my own life that night at 3am, it didn't mean I think it was worth living it, I just finally realized that this was the one thing I COULD control. (Yes, despite all the hogwash about happiness is a choice and all that other bullshit..sometimes..people..let's be real..it's not..and you are just fucking sad...and that's that).

When you live with chronic pain and illness, suicidal thoughts are real, very real. After all, who wants to live with pain for years on end? What kind of existence is that? Many of us feel that we have lost all control of our own bodies. Our bodies have betrayed us and there is nothing we can depend on. We continue to fail ourselves and our loved ones on a daily basis. Living becomes exhausting. Depression a byproduct of our physical pain and limitations (though many have tried to convince me that if I just changed my attitude my physical health would improve...this is where I would HIGHLY disagree with you...my illness is not caused by my depression, my depression is caused by my illness.. don't get it twisted).

So, how do you overcome it? You decide, in that one crucial moment as you shake the bottle of pills, cradle the blade or the knife or the gun or whatever weapon of choice you have in your midst, that even if every organ in your body decides to deteriorate tomorrow and you can no longer follow any of your dreams, that you CAN and DO in that moment have control over whether or not you will take the next breath.

In 2015, I came very close to the end. But I stopped myself. I found a sense of reason deep inside and asked myself: what will this solve? who will this help? And though I had some pretty strong reasons and answers to those questions, I found something else inside me that decided this was the ONLY thing I was in control of, and I wasn't going to lose that too.

I don't claim to know what it's like to live with depression, anxiety, bipolar or other severe forms of mental illness for years at a time. But I do know what my life has been like off and on the last 8 years because of how my physical illnesses have affected me emotionally and spiritually... and my friends... "the struggle is real." The allure of suicide hangs in the recesses of my mind on an almost continuous basis, especially during times of agonizing pain and weeks of insomnia. But I've always found the mental reasoning to rationalize myself out of it. And most recently, I've realized that feeling and being healthier and stronger has alleviated 99% of my depression and anxiety and allowed only goodness and light to flow into my life. And no, I don't think it's the other way around. There's no chicken and egg metaphor here. Being in less pain has made me happier. Period. It has provided clarity and hope in my life where none used to exist. Because I don't fear or look for death and pain around every corner, bite of food, missed night of sleep, hospital procedure or pill I am now able to plan for and enjoy the present and the future. I have regained what I lost almost 7 years ago. Control. Or at least a sense of it. And though I have SO MANY successes and life lessons to be thankful for in the past year...that is the greatest gift 2015 and turning 30 gave me.

Most of us have the power and the mental capacity every day to stop living and breathing if we so choose, and yet we don't, and being in control of THAT (your mind and your choices) surpasses any other physical betrayal of the body. If you have the mental capacity to stop yourself from ending it all, then you have more than you'll ever need.

Narratives

*Disclaimer, this may not be a "brief" post..too much to tell today*

"Seriously ill people are wounded not just in body, but in voice." - Arthur Frank

“I had grasped well that there are situations in life where our body is our entire self and our fate. I was in my body and nothing else…my body…was my calamity. My body…was my physical and metaphysical dignity.”-Jean Améry

Why do I write? Because I don't want anyone else telling my story. It's what I always tell people when I get asked that question. It's the only answer that makes sense to me. 

Everyone has a narrative. Everyone has a different version of the same the event. Everyone has a right to share that narrative with others and be heard. 

This past week I experienced some of the best moments of this past year. No, THE best moments of 2015 and possibly of the last 5 years overall. These moments are reshaping my narrative, and making the outcome of my story clearer. 

1) I got accepted into the MFA program at Pacific Lutheran University, The Ranier Writer's Workshop...AND...they offered me a scholarship! Here's a piece of the acceptance letter (not a generic one, but one from the director of the program himself): 

"Congratulations! We think that you--your accomplishments so far, your talent as a writer, and your mature commitment to your writing life--will be a tremendous addition to the RWW community. I hope that everything falls into place, and that you join the program this summer.

Especially in the memoir pieces, 'Pelo Malo' and 'Change,' you are able to illuminate the personal and cultural energies that converge in your experiences as an American whose heritage is also drawn from a vivid elsewhere. And in poems like 'At the Greyhound' and 'Disorder,' you create compelling balancing acts between statement and music, heaviness and lightness, identity and art.

Your work in poetry and prose has so much fierce passion--and there's much more ahead in terms of the breadth and depth that your work can encompass. Given the foundation that you already have, your time in the RWW will be a time for bringing more artfulness and more craft to your work as a writer. You'll be challenged, you'll be transformed. And you'll bring gifts of energy and intelligence that will, in turn, deepen the RWW." - R.B.

There was A LOT more to the letter but that was probably my favorite part! How awesome is that?!

2) On the same day I learned of my acceptance to the RWW program, I found out that my creative non-fiction piece El Corte is a finalist for Barry Lopez Creative Non-Fiction Prize with Cutthroat Magazine!!!! I was NOT expecting that! Even if I just get honorable mention, the piece gets published in this great mag. There is a monetary prize for 1st and 2nd place, but I honestly am not worried if it doesn't make it that far..just being one of the 20 finalists out of over 200 submissions is AWESOME! And...it's being judged by one of my favorite authors- Nick Flynn! How cool! 

3) My love, my rock, my everything finally finished one of the longest chapters of his life this weekend by defending his masters thesis at UTEP. I was able to sit in on his defense and cheer him on. He told HIS narrative and his committee embraced him with open arms. Literally, the only "critique" he got was: "Cut some of this ish out so it can be publishable." lol He is my inspiration, my muse, my guide, my soulmate. I am beyond proud of him and am ready for his "thesis" to become his MANUSCRIPT. I'm telling you people...I may be a "good" writer...but this man is GREAT. I feel it in my bones...and no, that's not the Lupus talking! 

4) I felt a baby kick for the first time. (NO not mine lol) My bestie Cam is preggos and she came over for the graduation celebration. I placed my hand on her belly and felt her baby boy kick! It felt like a little alien, but it was so cool. Just really made me emotional about how true it is that all of life is a miracle. 

This weekend, Lupe and I were surrounded by so much family, friends and love. It was blissful and overwhelming. I saw people I hadn't seen in years and felt so elated to have them there to share in these special moments. I tell you all of this not to brag or boast, but because all of these events and these people are a part of my story, a part of my journey..to where? I'm still not sure yet, but what once was a path paved in darkness, is now becoming more of a foggy wooded trail and I've found a flashlight. 

Part of my application to grad school required a personal statement that I explain why I wanted to be in the program. I explained that I was struggling to balance the two "disparate" narratives that constantly played in my head: I am Afro-Latina vs. I am chronically ill. I said that I hoped being a part of the program would help me find ways to allow them to coexist. But I had a revelation this morning and I think I know why I have been struggling with it so much.

For the last 7 years I have seen my illness narrative as just mine. The stories and poems I have written (until recently) were all "me, me, me." As if I were experiencing my illness alone. But I know (and I've said this many times before, but I guess never infused it into my writing) that I am not in this narrative alone. Lupe has a narrative about my illness. My parents have a narrative about my illness. My friends have a narrative about my illness. In much of what I have written about this journey, I have kept everyone else on the periphery. But I cannot tell this story without them. And that is where the Afro-Latina side of my identity will play a part. 

I have been telling most of my chronically ill narrative in a "vanilla" sort of way. Hoping to appeal to the masses. Hoping to tell a story that anyone could relate to. But by doing so, I am only telling part of the story. I cannot exclude my racial and ethnic identity and influence from my illness narrative any longer because by doing so, I risk sacrificing my truth. 

A Box of Books

All these years, I have only been "playing at" being strong. I know what strength is supposed to look like, and sound like, and act like and so I did those things. I woke up every day and got dressed. I took yoga classes and meditated to be "at peace." I tried new foods, new meds, new hobbies, new doctors and even made some new friends. I only cried when I had no other choice but to let the tears fall and very few people ever heard me say I wanted to give up. I've had people tell me time and time again how "strong" I've been to be able to handle it all. But the truth is, I was merely being complacent. 

You see, it got to the point where the pain and the suffering, and the diseases and the stress became a part of me. Something I accepted as normal and permanent. Dictionary.com defines complacency as: "a feeling of quiet pleasure or security, often while unaware of some potential danger, defect, or the like; self-satisfaction or smug satisfaction with an existing situation, condition," That. Wasn't. Strength. 

I see it like this: Imagine you have to move a heavy box of books from one end of the house to the other and you don't have a dolly. You can do one of three things, push the box of books, pull the box of books, or try and pick it up and carry it. True physical strength would come from carrying it, maybe even pulling it (though that's more like dragging it around). Me? I was slowly kicking the damn thing forward with whatever little bit of energy I had in my legs, while often sitting on the box and taking cynical breaks while others tried to cheer me on. I am a pusher. I pushed my pain and my burdens forward because that's what was safe. It was easier that way. It was secure. No matter how many more books (problems) got put inside my already heavy ass box, I just shrugged and kept kicking it forward. There was no strength in that, it was like "meh, as long as I can push or kick it forward, I'm good. Bring on the books! If I can't push it anymore one day, I'll just sit on it and read the books." That is no way to live, because if you can't get the box to the other end of the house, you'll never build your library. This is no way to live.

The other day, a kind and caring doctor gave me the strength I needed to pick up the box and carry it across the house. She treated me like a person. For the first time I felt heard. (Don't get me wrong, my rheumatologist and nephrologist are GREAT...when it comes to my scleroderma and lupus...but NO ONE has bothered to listen to me regarding my vagina, ovaries, uterus and other lady parts) I don't know why it's mattered so much to me that SOMEONE take me seriously and actually listen to me regarding that particular part of my body, but it felt so empowering and liberating to know that steps were being taken to try and find out what is wrong.

The first thing she said to me was "let's pretend you're normal, you don't have any of these other things going on and try to fix this." In that moment, it felt like I could bench press the damn box. While she knew that my illnesses could possibly be causing what's wrong, she didn't focus on that. She didn't focus on what was already broken. Instead, she saw me as whole, and wanted to zero in on this problem instead of blaming the other problems and dismissing me.

It's a weird dynamic that you may only understand if you're chronically ill. But to be treated like a normal healthy human being by a DOCTOR is a rare thing. People might say "you shouldn't have to wait for someone ELSE to make you feel strong"... well clearly those people haven't dealt with the medical industry. As a patient, I can't schedule my own MRIs or blood tests or X-Rays, I need a doctor's referral to do that, and if no one is willing to listen to you and be proactive, then you are left helpless and dis-empowered. It's how I've felt 90% of the time over the last 8 years.

This doctor gave me my power back. I cried all the way to my car and all the way home simply because I finally felt hopeful. Simply because I knew I no longer had to "play at being strong" but had finally been given the strength to carry the burden.

Back to Brevity

"If you would be pungent, be brief, for it is with words as with sunbeams–the more they are condensed, the deeper they burn." -Robert Southey

I think I have forgotten how to be brief. Which is a shame since it's the title of my blog. Some of you may have noticed that I changed the title from "Chronic Brevity: Living With Scleroderma" to just "Chronic Brevity." Why? Well unfortuantely because I live with more than just scleroderma, as you also may have noticed by now. But I didn't want to completely change the title and confuse people, so I just eliminated the sclero part. But as I stare at the title and review my most recent posts, I realize that I've actually been chronically long winded lately. The words just pour out of me and I feel like I have too much to say. It's a great feeling, no doubt, but it defies what this blog was originally about. 

Chronic Brevity was born from a Shakespeare quote "brevity is the soul of wit" and the play W;t, in which the main character is dying of cancer and all of her encounters with doctors and everyone are brief and she talks about how life is brief, and the best writing is brief etc. So...chronic brevity was born. It fed my need to share what I was feeling and put it down on "paper," it helped me feel like I was reaching out to others and helping them in some way, and it challenged me to say in as few words as possible what I needed to say. 

I want to return to that. I have spent a lot of time lately learning about the art of flash creative non-

fiction. It's a style of writing that requires you say what you need to say in 2000 words or less. I absolutely love this form since it allows me more freedom than poetry but doesn't ask that I create a whole narrative. I am drawn to this form of writing and I want to use my coming blog posts to experiment with it. I used to do this as a standard in the early years of this blog, but for better or worse, the harder the struggle has been, the lengthier the posts have become. 

It's time to be brief again. Do I have a lot to say? Yes. Am I inspired daily? Yes. But I can't let the words control me. I have to find a way to control the words. Say exactly what I need to say in the most concise way possible, like a doctor or a nurse, diagnose the problem and simply walk out of the room to let you process what you heard. Let it sink in, and then have you come back wanting more.

So, I start today with the topic of invisibility and the intangible.

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We often do not understand or believe in the things we cannot see, feel, or hear or experience with our other senses. Yet, it is often those things that affect us the most. We cannot really feel, or touch or even see a 6 week old fetus, but if we know we're pregnant we can feel the greatest joy of our lives. And if we lose that intangible child, we can feel the greatest loss of our lives as well. 

It is often the memory of someone we loved that hurts us more. Whether they left us willingly or whether they were taken from us by death. We can no longer see them or hear them or touch them or hold them, but their memory often haunts us and prevents us from moving forward. 

Many of us believe in God or a god or some being higher than ourselves. A thing, a power, a being we have never seen, or touched but maybe only felt in our hearts during some high or some low in our life. We have a blind faith because it helps propel us into new directions even when we really don't want to. Simply because we believe that if God or the universe has kept us alive this long, then clearly we still serve some purpose. 

The same can be said about invisible illness. Like a friend of mine from high school used to say about water molecules in the air: "you can't see them, but they're there!" My invisible illnesses have plagued every aspect of my life, sometimes for the better, sometimes for the worst. Even when I feel great, move freely and have days or weeks of little to no symptoms my illnesses linger and live inside of me. Affecting every decision, guiding my every move, and controlling for me whether it will be a good day or a bad one. 

My illnesses are not tangible. I cannot hold them in my arms, touch them with my hands, or see them wrecking havoc on my organs. They have names and they are alive inside me, but to everyone else it's like a child's imaginary friend that you think is cute but don't really understand. But that doesn't make them any less real. I may be on the way to remission, and I may be having better days now than I've had in 8 years, but that doesn't mean I'm "better." It doesn't mean I've "gotten over it." It doesn't mean that I've forgotten all I've been through and the person it's made me. You wouldn't ask a grieving widow to "just forget" about her dead husband, and you wouldn't ask your Christian friend when they're going to "get over" the whole Jesus thing. 

You may not be able to see my illness, my pain and my suffering, and these days I may not be able to physically feel its effects, but I still live with the looming threat that at any given moment my body could decide to flare up and shut down without warning. And it is that intangible, invisible understanding that encourages me to not take one single moment for granted, to spend time with the people that I love, to only do the things that bring me joy and to love as deeply and as fully  as my heart can take. So in the coming weeks and months as I take the time to reevaluate my priorties, my goals, my career choices, and who and what I spend my time on and with realize that it is often the things we can't see or touch that make us who we are and change us for the better.

(587 words)

Infused

“May your mind be infused with 'one' thought(concentration of mind)! May every action of yours be embellished by 'one' thought! May your resolution be 'one'. You, who are acting to the contrary, your disposition shall have opposite orientation.”- Athra Veda

I hope to keep it short today. I want to give you all on update on all health related things, so here goes.
I had both rounds of Rituxan infusions and everything went GREAT! I couldn't have asked for a better outcome. Although I still don't know if it's officially helped or started to reduce the kidney inflammation, I can say that I feel like a completely new person. I have had more energy in the last few weeks than I've had in years. The pains in my side from the lung inflmmatio (pleuritis) are minimal and only mostly at night or after a large meal, but still a lot LESS than what it has been. I don't really have any fatigue unless I over exhaust myself and my muscles and joints feel really strong. I'm also eating better/more and most nights I can sleep alright.

I'm still having some issues with my hands and fingers. The ulcers don't want to heal and my fingertips just feel really sensitive lately, even typing this hurts. I see my doc on Thursday of next week and will definitely ask him about it. But overall, as you can see I finally feel like I'm getting some much needed relief!

The Rituxan infusions were a piece of cake for me. I was able to bring books, my laptop, my phone, a few magazines and even a snack. The first infusion took about 4.5 hrs since they had to be sure I wasn't going to have an allergic reaction. And thankfully, I didn't. The worst part about it all was the fact that nurse couldn't find a vein so she had to stick me twice, this as you know, is not unusal for me. After about 10 minutes I actually just fell asleep, soundly! As you can see from the pic, those chairs are REALLY comfortable, so I just reclined back, wrapped myself in a blanket and took a two hour nap! I also think it was the Benadryl kicking in and the fact that I didn't sleep well the night before due to being anxious about it all. (They make you take Benadryl and a Tylenol before the procedure to reduce the risk of an allergic reaction and pain.) 

My mom and Lupe were there and kept me company. They had a TV in the room and one other patient. It was actually quite relaxing.

The second infusion was only 3hrs because they could give me the medicine more quickly since I responded so well the first time. This round went much the same. I took a bunch of stuff to do, and barely did any of it cause I fell asleep almost immediately. I did experience a few hot flashes after both treatments on the ride home but that was about as bad as it got.

For those of you that don't know, here is a little info on what Rituxan is: (I had some trouble getting insurance to approve it because it's not "FDA approved" for Lupus nephritis, but of course my amazing Rheumy worked his magic and made it happen- this requires a lot of paperwork on his part and a few phone calls on my end)

What is Rituxan? (www.drugs.com)

Rituxan (rituximab) is a cancer medication that interferes with the growth and spread of cancer cells in the body.

Rituxan is used to treat non-Hodgkin's lymphoma or chronic lymphocytic leukemia. It is also used in combination with another drug called methotrexate to treat symptoms of adult rheumatoid arthritis.

Rituxan is also used in combination with steroid medicines to treat certain rare disorders that cause inflammation of blood vessels and other tissues in the body.

Rituxan may also be used for purposes not listed in this medication guide.

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So, as you can see, Lupus patients DO and CAN receive "chemotherapy." Everyone's eyes widen when I tell them this and they assume I'm going to lose all my hair and that I must be dying. Not. True. Rituxan along with many other drugs simply suppress the immune system, and since my immune system is attacking itself and over "excited" that's what I need to do and that's how these types of treatment help.

I am glad that it seems to be working and helping with my overall health. Next week I go in to see the doc, get labs drawn and find out what the blood work says. Hopefully it reflects how I feel! - All good in the hood! lol

I know that being in a good place emotionally and mentally helps with overall physical health, but I do feel like the reverse is also true. I feel better emotionally because I feel better physically. I don't think it's JUST the other way around as some would have you believe.

Regardless, although I am still leery that all of this energy and good health is only temporary, I will embrace it and enjoy it for as long as it chooses to last. Afterall, I've had some pretty shitty years and really deserve a break!

(Stay tuned for next week's post on Writing and Getting Wiser)