Dear hopeful reader,
I’ve been chronically ill for years, years of never-ending flu-like symptoms, pain everywhere possible and impossible, erratic and gradual changes and fluctuations of unwell-being, and (what is beyond) exhaustion.
Chronic pain, I’ve gathered through observation and experience, is a lot of things in one painful thing: ache, discomfort, isolation, loneliness, fear, melancholy, burden, lethargy, restlessness, loss(es), mourning, despair, bitterness, numbing, darkness, misunderstandings, and more of that.
But when you get tired of being tired, when you get sick of being sick, you try with all your strength that remains to find meaning and wisdom in it all.
And when you do, the painful things make more time and space for delight, joy, lightheartedness, imagination, resourcefulness, aspirations, resilience, perseverance, rest, minimalism, peace, hope, intuition, knowledge, dreams, and possibilities.
I’m still learning how to reconcile with the painful and delightful, how to live with both and keep my sanity. What has been fascinating me awhile, however, is how surreal life can get in experiencing the depths of being chronically ill.
And sometimes I wonder if others experience the surreality in their reality too regardless of what they were blessed with in their life journey.
Dreams becoming realities
When I refer to dreams becoming real, I don’t mean literally per se. A dream is only a dream. But sometimes a dream is life and living to me.
When I’m in so much pain that I whisper—I cry—prayers for mercy to anyone who may be listening in the ether, my body eventually gives in to a way out (or a way in?) in dreaming.
My body knows when to give me dreams of comfort, splendid dreams. It knows not to give me more pain than I already endure in real life although it’s just a dream—a dream that could still feel so visceral, so real.
How does a body, or mind, know to be tender and full of grace to oneself at the height of suffering? Or as I like to call it a surrender to a softer state. I imagine it can be explained with science. But as I don’t fully understand the mystery, I accept and receive it as something magical.
At times I dream of sailing from ocean to ocean, tepid wind caressing my skin, waving my hair in every which way. Or I dream of slashing every last zombie in a post-apocalyptic wasteland, becoming a savior and protector of whatever is left of the civilization.
Upon waking such dreams make me feel more enlivened, in love with life. I feel resiliency coming back to me, the determination to hold on a little longer. Until I mentally adjust to my now normal, until I physically adapt to a new pain tolerance.
I don’t just cope through those dreams, I live through them. I go on adventures, travel the world, meet and love strangers, have a career, change lives, even manipulate outcomes in the REM state.
Life and dreams aren’t separate to me. Dreams make a gracious addition to my testing yet meaningful existence, reinforcing me further with patience, protection, imagination, and intuition.
I don’t see it as a sadness—although I understand how it can be perceived as such—but a marvelous surreality I welcome, embrace, and thank.
Poeting on the meaning of pain
If you’re a poet, then you more than likely love using metaphors, similes, imageries, and such in your writing. You love using language creatively, experimenting with words, making up new ones, all to amplify meaning or even alter it.
I do. I felt a calling to write poems at a young age of fourteen. It’s been releasing and liberating to write on love, nostalgia, longing, mourning, suffering, and joy through poetry—to make sense of complex feelings complicated by the banally weird but remarkable experience of puberty.
As my body was drastically changing, my mental states ever shifting, and I not yet understanding the magnitude of growing as well as abnormal pains, it’s been cathartic to simply write poetry and free myself of any burdens I felt then, even if fleetingly.
One of my earliest poems fourteen-year-old me was very proud of:
We keep on going
Each step we take to find each other
Is another step we have to make.
Each hour traveled in much persistence
Is another hour we have to walk.
I am certain that we are wrinkling
And that our strength is almost gone.
Yet we fear not looking forward
And do not contemplate the past.
Night and day, we walk not knowing
How and when we will arrive.
The wind flies by to grant us courage;
It whistles softly, “Almost there.”
There is a labyrinth between us
Of an infinite length, it seems.
Even then, we keep on going
For our love is much too great.
Today it’s a relief to have and hold words that give name, sense, and interpretation to living in a painful body, allowing me to better process my experiences, allowing others to better understand what chronic pain embodies.
In one poem, I called pain “an eagle that never perches.” It’s an image that anyone can imagine with unease, feel concern and compassion for the eagle. An eagle to not perch as much at it could fly for so long without landing? It’s a torturous sight.
As such, poetry becomes a surreal ungapping of our most profound life experiences and expressions—for ourselves, for others. It becomes a mirror of ourselves looking back at and through others, hands held out in understanding. It becomes a bridge from our path to someone else’s in love and empathy.
We start to truly see each other even when we may not completely fathom our differing struggles.
Wondering about pain freedom
If you ask me about the last time I was truly pain-free, I’ll tell you about fragmented memories of feeling carefree, pain-free, just free.
Although so faraway now from my grasp of remembering, I at least remember being six, often playing in my imagination, often laughing with friends from kindergarten, often soaking up the sun and chasing after bugs I fear today.
Child me didn’t know what physical pains and limitations were, let alone the aches and discomfort that don’t let up or let go.
I sometimes relive pain freedom before fully waking up in the morning, if only for an instant, before all the pain rushes back in. There it was, now there it isn’t. Otherwise I don’t know what pain freedom is; I can’t even imagine how it must feel to have this freedom. Although I know I would cherish every moment of it.
Certain individuals in similar situations may have temporary remission(s) from their chronic condition(s). Others don’t even have to think about the limits of their strength and energy.
I want to ask them what it is like to hold a holy grail so impossible for me to find right now. (I say right now because I’m hopeful, still.) How do they take it for granted? How do they treasure it?
I often wonder about pain freedom while doing my utmost to savor even a second of an inkling. But life goes on, and so must I. I fake freedom with laughter and humor as much as I can muster it. It became second nature.
And thus every now and then I forget to notice the severity and sharpness of my pain so deeply embedded in me. Maybe that’s my pain freedom—an odd power, gift, and intention, all in one.
Aging and not aging strangely
Of course I age. But let me paint a portrait, or two, of a woman who feels herself ageless yet aging at the same time.
I briefly and abstractly explored such concept in a little weirdling I wrote last year. But I’ll try to concretize it now as best as I can.
In a way time stilled for me in young adulthood. Moments ungotten, opportunities lost, motherhood forwent, everything I deeply wanted or could have wanted put on pause indefinitely. Choices that aren’t choices are not choices at all but realities one must have the fortitude to eventually accept.
Thus a part of me, my soul, exists—is stuck—in the in-between of what is possible and unlikely for a person still blooming, even now, even if inwardly. Thus I feel myself then, still. While time is in fact still going.
Contradictorily I also feel myself aged too soon. Someone who may know little or nothing about me will perceive me as a young, healthy thirty-something-year-old woman. They won’t see the nuances of my pace slowing at times, my micro-expressive wincing at my joints suddenly flaring up. It’s well hidden, invisible.
But physically I do feel like an elder, no one’s and all’s grandmother, or how I imagine they must carry themselves at their age. What makes me experience the ambiguity of age and aging is how my soul feels at any given moment. And sometimes my soul could absolutely feel boundless, other times utterly defeated.
I don’t know what aging normally is like. How does a twenty-year-old feel? Or someone my age? A middle-aged person? A senior? Someone please tell me.
Perhaps this unknowing is a strange blessing. I may not need to adapt to an aged body decades from now as I’ve already adapted. And my soul can exist in a state of any age. How liberating!
At the end of the day, this vessel that houses my soul is all I have and will ever have. Not all get to be so lucky, not all get to live this long. Some are stillborn, others are destitute. Someone else gives up; they couldn’t hold on until a brighter day.
With this in mind I’m grateful for my loved ones for supporting me, each day I’m given to make meaningful choices, every life lesson teaching me patience, gratitude, humility, and compassion.
And I treat my mysteriously and not so mysteriously breaking and unbreaking body as I would a sacred ancient temple. And I treasure each moment that makes my body in sync with my soul that loves to sing, dance, and rejoice—or close enough that I don’t pay much attention to the fatigue, the pain, the heaviness of it all.
And I take the good with the bad; I take life in balance, in stride, day by day. And I thank the experiences that make life miraculous albeit peculiar. There’s value, beauty, wisdom, and joy to be found even in the most surreal of experiences. When we let them and ourselves just be.
Does life ever feel surreal to you? How so?
Yours hopefully,
Nadia
I wish I could help, sending you strength and a smile. Maybe Bellatrix can come by for a visit.
While reading I was reminded of Camus. I think a lot about Camus these days, esp. his essay The Myth of Sisyphus. You speak of the surreality of living, his philosophy is fully based on absurdism, how to find meaning in a meaningless life. Existentialism. Have you read Camus?
Ah Nadia, one feels helpless reading this to know you suffer so through pain. I am glad you have your dreams. May they continue in all their varied and wild and softening beauty. "Upon waking such dreams make me feel more enlivened, in love with life. I feel resiliency coming back to me, the determination to hold on a little longer." This is a lovely line to read.
I will say that it is wonderful to have you back here on Substack. I hope you can find some warmth and comfort from being back here. Plus, I'm glad you have Kimberly to connect with and share in your experience of pain.