When I was diagnosed with lupus after returning from a trip to see my estranged mother who was dying, and in the midst of heated family conflicts surrounding that impending loss, I made three very right decisions:
To start a meditation practice, after many years of not having a consistent one, regardless of what it might look like.
To find other people with lupus so that I could learn from them to do what I could to be as well as possible.
After 30-plus years of being a smoker, and against the advice of a smoking cessation expert, to go ahead and quit smoking immediately.
These decisions, my definitive choices when I didn’t feel I had many I could make, continue to carry me.
could not be worse than lupus symptoms on a bad day. That’s what I’d decided.
I had tried to quit many times. But while seeing my mother I was exposed to so much cigarette smoke, and it’d made me so physically ill, that I decided on the ride to the airport that I’d quit when I got home.
I had cut down to 7 or 8 cigarettes a day before the trip, but I knew it now. It was going to have to be a quit starting with zero and ending with zero. No former smoker I’d ever met had quit by paring down.
Quitting’s gift was better health, right? What I didn’t know was that it had many things to teach me about me. I smoked when I felt bad or isolated and when I felt unheard and of course after sex and when I needed a moment for me and when I had to write. How could I ever write without a cigarette? How could I have sex again?
Tobacco also had a key role in my culture and history. Along with sugar and coffee, tobacco was at one point a top cash crop in Puerto Rico and, later, a leading export. Puerto Ricans had even migrated to the U.S. to work in the tobacco industry. Tobacco was used in rituals and religious ceremonies by people like me. Growing up, both my parents smoked and most of my uncles. My maternal grandmother, who was confined to a wheelchair for most of my childhood, was allowed a daily ration to chew on till she died.
It was tough to step aside and let tobacco be. But quitting helped me become more present, more aware of how I respond to many forms of discomfort and discontent. And when I’m aware, I can make a choice I agree with. I take strength in staying quit.
The time I made this change was the perfect time for me to do it. To let cigarettes be. If you yourself have a similar addiction, I hope you find a way to break with it that is just right for you.
has always been at the heart of who I am. The fact that I’ve had the opportunity to be a part of so many, each one so unique, with its own gifts, helping to build my values and character, makes me feel blessed beyond measure. But I wasn’t ready to tell people that I was sick – somewhat broken or deficient or less than. I couldn’t even really understand all of what was happening to me.
Like others with lupus, I had been dealing with related symptoms for years prior to my diagnosis. They’d just gotten significantly worse overnight while several new ones emerged simultaneously. I had, among other things, burst into three or four different types of rashes, not counting my lupus butterfly. I needed a 20- to 30-minute lie down break to rest from the energy it took to take a 10-minute shower. I had chronic dry eye and mouth and chronic joint pain. Nose and mouth sores and bleeding gums. Nighttime seizures and daytime panic attacks. An indescribable physical reactivity to any form of stress. An unwavering sense of overwhelment. A cyst in one of my breasts. Brain fog ruled and I survived mostly on a pot of soup I’d make for the week. I had vertigo. I had become hypersensitive to light and sound. No one could understand what I was experiencing. And steroids had me emotionally all over the place.
To find that you are welcomed and seen and heard and cared about under such circumstances and to have help to begin to make sense of those circumstances is a gift beyond measure. A good community makes you strong.
I found my lupus community first in the Molly’s Fund online lupus support group and then in More Than Lupus’s. It was a life jacket for me. My lupus community was built by two visionary women, powerful with purpose. Hearing from others who were facing similar challenges not only made me feel less alone in my experience, but I got to learn from experts how to respond to those challenges.
I hope you yourself have at hand the community you need, the one that is just right for you. And that you can build it if you don’t.
Having a Meditation Practice
means many things to many people. For me, it’s meant the discipline to show up exactly as I am in order to be right here right now with all that is, even when it’s ugly and painful and unpleasant, especially then.
But it’s also meant that in my meditation practice I’m not seeking anything. I show up to be with all that is and to let it be. My practice will never be something I get to refine or get good at. I just get to practice, to show up again to try to be where I am. That is humbling to me.
At first, all I could manage was a 3-minute practice, but I did it anyway. Often, I was only able to meditate laying down. Then I graduated to 5- and 10-minute sits. Sometimes I’d spend the entire period weeping as I dealt with an old wound that lupus brought to the foreground or as I tried to reconcile what I was experiencing, among which was a certain loss of identity.
Many times I was angry, deeply, deeply angry. Didn’t women of color have enough to contend with already? Must we also contend with diseases that seemed to overwhelmingly target us in particular?
Sitting meditation allowed me to look at that deep set anger and to begin to let my emotions have their space so that I could let them go. I learned to name each one as it arose – sadness, fear, guilt, dread. In doing so I gave them the recognition they deserved and let them pass. I repeated this with physical sensations – nausea, throbbing, fatigue, vertigo. Every time I showed up to be present, it reminded me I couldn’t control my life experience but showing up for it as fully as I could always worked out for the best.
Every day I take strength in the inner space that my meditation practice frees up in me. My practice helps me stay clear. It makes it possible for me to offer compassion to myself and others under challenging circumstances. It reminds me I’m human and imperfect and open and flexible and adaptive.
The decisions I made when things seemed to be falling apart were, unbeknownst to me then, intricately connected. They each offered opportunities to ask, “What is it that I really need? Right now, right at this moment? How can I be as helpful to myself as I am to others?” And to give myself permission to cater to those needs without guilt so that I could stay the course. It’s an ongoing journey. I take strength in how I get to be on a journey at all.
I hope you’re able to have a practice that gives you strength in your own journey, to have a community who sees you and supports you in the way you need, and that your coping strategies are free of self-harm.
Naomi Ayala Poet, Teacher, Writer
Naomi Ayala has published three books of poetry. Her most recent book, Calling Home: Praise Songs and Incantations, was published by Bilingual Press. She’s also the translator of one novel and a book of poetry. She lives in Washington, DC.
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