I’ve been working on new posts but have neglected to finish any recently. With that in mind, I went back to some old poems and pulled a few out that caught my eye for one reason or another. I’m rather undecided about whether or not I think they’re “good”, but still, there is something about most of them that appeals to me. Here is an untitled piece that is at least 15 years old… Hope you enjoy!
Closing sunset’s door
night creeps in without offering a candle.
Imprisoning me with the stench of desperation…
it wraps its charred fingers around my throat
and chokes out any hint of light
remaining in my dismal room.
Lulling me with its siren song
the twilight offers a flicker – a flame.
Through the warped and greasy lens of age
I glimpse one last vestige of an ambient dawn
exultant and guileless –
like cartwheels in the sun…
The mirage falters and fades
burning my retinas for the briefest moment
in its glorious jubilation.
And then night returns –
creeping into each far corner
and extinguishing the beacon of my memory
leaving cold oppression
in this claustrophobic room.
This incessant noise, thoughtless chatter
is so abysmally abrasive…
It peels the soft insulation off this
It’s probably ‘a drop in the bucket’,
just a whisper in the void…
If you change your angle, change your tune
evasive action is deployed.
Lower your standard, raise your octave
– stutter “once upon a time” –
When you close your eyes to the greed of need
it’s bound to feel sublime.
Why trouble yourself with a quiet plea
from a desperate, vagrant voice?
Your memoirs are much too important, you know,
and your ignorance more so a choice.
So you stuff your face with the vestiges of
compassion you claim to purport.
Consumer lives are flashy – the rage –
buy the t-shirt to show your support.
Never notice my pain or my silent tears
is this how meaningful I should be?
My words packed away – they’ve no power here…
That voice that you stifled was me.
if the spirit is truly carried on one’s breath,
please let me breathe you in.
bury my face in the soft curve of your neck
and, when your heartbeat is in sync with mine,
let’s introduce our lips.
uncertainties are carrion for self doubts we wear
so come to me stripped down
layers of your soul laid bare…
and let’s lie on our tummies in soft spring grass
gaze into each other’s eyes
sharing wishes and dreams
trading secrets on whispers fragile as wings.
would you ache to illicit my laughter
as I seek and nurture yours?
and in joy, trace the lines of my face?
be interested in the phrases between words?
those unspoken nuances of emotion –
the tender underbelly, vulnerable and raw
a quiet self hidden from the world
sacred few only see…
and when my soul stands naked before you
is this the pinnacle or descent?
are they equivalent in your eyes?
unencumbered by placating masks,
have I lost my charm and mystery?
are you paving a way for moments to fade
into plastic, nostalgic memory
so you can toss me on a pile with the rest?
it’s not too late – this is only as lost as you want it to be…
so dare to take hold of fear and
please breathe me in once more
– you’ll find me again
in the warmth of your mouth…
where our spirits first learned to linger
When there are days you have to sit down to rest after taking a shower, exercise can prove next to impossible. It can really be a pain in the… well, it’s painful. We’ll just leave it at that for now.
Exercise is important to a healthy lifestyle and a healthy body. It can lift spirits, provide immunity support, strengthen and tone, and keep everything in good working order… But what happens if exertion is the very thing that makes your body sicker? The thing that is capable of completely incapacitating you? Welcome to living in a body run by ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome). This is my nightmare.
Before I got sick, I belonged to a local gym and enjoyed going 4-5 times a week. There was a yoga class I loved, a spin class I was finally getting good at, weights that were toning muscles I had forgotten were there, and a cardio room that I used to meet my sister-in-law in so we could use the elliptical machines together. It wasn’t always easy to go and sometimes I skipped, but I tried to make make it a priority on my schedule.
Fast forward to the present. My body has undergone quite a few changes in the passing years. Harboring several different health issues and a humdinger of a coupla chronic illnesses, the gym has become a thing of the past. Almost like a fairy tale I made up to amuse myself. It’s been almost seven years since my ME/CFS diagnosis, and a couple of those have felt like the longest years of my life.
What most people don’t understand is how I can usually look fine on the outside while saying I’m so sick on the inside. Typically, I look pretty healthy. A little tired, perhaps. Certainly carrying more weight than I should and than I used to… In general, however, I look like your neighbor or your sister or someone you would pass at your gym. Meanwhile, the inside of my body is a wreck. And one of the main things unseen is how it can take every bit of energy I have to make you believe I feel as well as I look. *sigh* It’s something of a curse, at times, because people with ME/CFS have to spend a great deal of time trying to convince people that they really are ill. Even though some are extremely ill.
Please believe that I am not lazy! I wish my body was cooperative. I wish I could exercise like people tell me I should. The truth is, everything goes haywire if I push too hard. If you have to sit and rest after washing a sink of dishes, you’re probably not at your healthiest… And while I am MUCH healthier than severe ME/CFS patients, it’s nowhere near the person I was. (For an absolutely heartbreaking look at what severe ME/CFS can look like, please read this recent article from The Washington Post about Whitney Dafoe.) Some patients can’t leave their homes – others are confined to their beds. It’s a blessing not to be stuck in bed, and a continuous source of gratitude to know I am not housebound. I walk as often as possible, manage to work 20 hours a week, and still have enough energy at times to go out with friends and family to a movie or restaurant. Heck, when all the stars are perfectly aligned, I might even manage a short hike!
What I would ask you to know, however, is that it comes at a price. When a reasonably fit, healthy person hits the trails or goes for a run they might have sore muscles after an intense workout, but they can get back out and do it again within a day or two. For someone living with ME/CFS, exertion of any kind (physical, mental, emotional) can lead to days, weeks or even months of recovery time. In some cases, overexertion is the reason a mild or moderately ill patient ends up permanently bedridden. It’s a terrifying tightrope to walk. Never knowing what a few extra minutes of walking might do. Never knowing if too much housework in a day will put you in bed for weeks. Living under that black cloud of uncertainty is its own form of mental exhaustion. My body doesn’t react to activity like it should. Sometimes walking from the bedroom to the kitchen causes such oxygen deprivation that I have to lean against the counter until my breath comes normally again. There are days I may manage to get to a hiking trail, only to discover a quarter-mile in that my heartbeat has become increasingly erratic, that I’m staggering because my equilibrium is way off, or that my body temperature won’t regulate and I’m sweating profusely despite the cold or shivering despite the heat. I’ll confess – there are times I’ve had to sit down in the aisle of a store or abandon a cart full of groceries simply because my legs became so weak that I couldn’t stand anymore. It has come down to making the decision to finish a task or have enough strength to drive home. It’s frightening to be okay one moment and find yourself helpless the next… Every system of my body revolts, sometimes at a moment’s notice, and there is nothing I can do but ride it out. So many random symptoms might attack – chest pains, missed heartbeats, brain fog – just to name a few… There are so many severe potential risks to being active that, if I’m not having a good day to begin with, it really isn’t worth taking a chance.
Other times, however, I do risk it. To enjoy the outdoors, to feel like I have a life, to maintain some independence… I tell you all these things so you know the effort and energy it takes, and so you can be a bit gentle with me, or anyone else you know with ME/CFS. I would also ask, however, that you remember sometimes we dare to dream… we dare to take the chance. There are some things in life that are worth it. By asking you to understand, I’m saying you’re probably one of them.. 🙂
Stepping out into the world and
trying to make it better with my presence…
Holding doors, offering assistance and being aware of
~ each please and thank you ~
Remembering to always be considerate of feelings,
guarding actions and intentions.
Practicing abundant generosity!!
Seeking a kind heart and gentle spirit…
Looking outside of myself
and doing things for others.
Paying. It. Forward.
And still daring to dream and
learning to reach for the stars in my own sky.
Spreading my wings.
Trying to fly.
Raising my hands to the sun and twirling
without care for who is watching.
Throwing back my head and laughing
from deep within
enveloped in each second of momentous joy.
Smiling more and often and freely –
without self-conscious thoughts
and no concern about the way my teeth look.
Singing and dancing with wild abandon
whenever my body feels the need.
Staring up at the stars in awe
never losing that humbling sense of wonder…
Allowing myself to be vulnerable and small in this
vast, spacious world – so much larger than I will ever see –
open to whatever experience is before me.
Giving every part of who I am –
holding nothing back out of fear.
Being a positive light to banish the darkness –
being a star in someone else’s sky.
Loving fully… Loving completely!!
Selflessly loving – never expecting a thing.
And allowing myself to be loved
knowing I am worth someone’s time
their attention, their respect, their kindness.
Protecting the precious gift of their love
hoping they will do the same with mine..
Starting each day with
compassion and caring,
always remembering to clothe myself in grace.
Aspiring to have a pure and grateful heart…
unchanged by all the hate and pain
that has been heaped upon it.
Reading more books – stretching my mind –
with thoughts, ideas and debates.
Refusing to make *me* smaller
so that someone else may feel they have grown.
Seeing the truth in myself that will remain
undiminished even though it is *not*
always the same as the truth that resides in others…
Respecting the unique and amazing way
is knit and constructed by
the circumstances, pain, and happiness in their life…
Taking time to honor them in their journey.
Praising my body, my limbs and joints and parts,
for carrying me through another day!
Respecting their hard work and
strengthening them, carefully …
always mindful of what is healthy,
being unembarrassed to admit
when I am unable and
asking for help if my body is weak…
Knowing I am wonderfully made and
weakness is no reason for shame.
Instead – rejoicing for I have the body of a survivor!
Being unafraid to embrace challenge
and learn from change.
Gazing out across deeper water
aware that I can only sink or swim
if I am willing to trust myself
and let go of the boat.
Understanding there is really no “failure”
except in not trying at all.
And acknowledging that they are not resolutions
merely due to time and convention,
but an honest attempt
I am meant to be.
It’s only fitting that you would be on my mind this weekend. There’s a HUGE movie premiere today – Star Wars: The Force Awakens – so it makes sense… Movies were, after all, the thing that brought us together, as we bonded over shared favorites and new recommendations during work at a video store. As a matter of fact, the first several times we went anywhere outside of work revolved around movies. Even years after we split up and went our separate ways, movies were a shared interest that would forever keep us friends.
So today, like so many other times over the past two years, a single thought keeps going through my head: It isn’t fair that you aren’t here now.
That thought revisits often and some days it’s particularly difficult to swallow… You would have been one of the first people I know to buy tickets for the new Star Wars film. I felt like I should have been at the front of the line for the first showing at the best theater in town out of loyalty to your memory. The first gift you ever gave me was your box set of the original Star Wars trilogy in “letterbox”, because I only had episode one. We stood and had a heated discussion about the difference in widescreen ratios and which episode was the best, so it was a nerd connection from the beginning. I can still remember, in fact, standing in line years later each time the original three movies were re-released in the theaters (1997?), hoping to get the right seats in the audio “sweet spot“. We did that for most big blockbuster releases for years, if possible, and had the process down to a science. A huge portion of my movie memories involve you in some way, and I can’t walk into many theaters without smiling as I hear the phrase “buttery toots” run through my mind. haha!
There are too many things you didn’t get to do before you were gone. Too many new movies, like The Forces Awakens, that you didn’t get to see. Moments you didn’t get to share. Carter just got married, you know.. and you really should be around to celebrate. Jen changed her Facebook profile picture to an older shot of the two of you in Hawaii recently and it’s lovely… Speaking of Facebook, Kim posts new pictures of Alex every couple of weeks and you wouldn’t believe how much she’s grown!! She’s so beautiful! She misses you, I’m sure… They all do. They deserve you around. And it makes me so angry sometimes that you’re not here. One of those moments in life that seems so unjust. So unfair.
It’s only fitting, I suppose, that you would be on my mind this weekend due to the premiere. How was I to know, however, that you would also come to mind because I discovered your grandfather passed away yesterday… He was such a unique and wonderful person and one of your best friends. I heard the news this morning and my heart broke a little because I always considered him family. He was not the same when I saw him at your funeral and I’m glad that’s not the memory that comes to mind when I think of him. Instead, I see him laughing at a joke the two of you are sharing over a family meal at your mother’s house. I see him animated and engaged discussing a story or memory he is sharing. I see the two of you hugging each other before making plans for your next get together. He’s headed your way now, so I hope you’ve got a chessboard set up and ready to play…
I don’t talk about you much anymore – our lives took different paths before you were gone and most people I see didn’t know you well enough to chat about memories of you. You’re still on my mind, however, at random moments or when some odd thing reminds me of you. Like a Danny Elfman song on any soundtrack new or old. Or when a movie or video game comes out I know you would flip over. Sometimes I’ll be looking at t-shirts and see an image or joke that is exactly your brand of humor… or hear a song that you used to repeat over and over just to get it stuck in my head (“doo-doo, doo doo doo doo, mahna mahna”). Thank you for those memories. For those moments that are now more dear simply because they were so finite in nature. Those things still occasionally have the power to make me sad, but mostly they make me smile. Smile because I was so blessed to know you. Smile because I know you lived every moment of every day to the fullest with no regrets. Smile because you were one of the best friends I’ve ever had…
It will probably be a bit bittersweet waiting to file into the theater to see the new Star Wars movie, but I know I’ll be smiling when the phrase “buttery toots” go through my mind. Thank you for that… 🙂 in memory of Josh and his wonderful GPa, Jimmie
Pain has a language all its own. Pain and suffering mark time differently. Pain is voracious and consuming. Pain comes in many shapes and forms.
Do you ever struggle with pain? Not just the physical kind – although that can definitely stop you in your tracks! I mean “pain” in general. Physical, mental, emotional… Each type is equally draining in a way. Equally clarifying to an extent. And each takes a toll on the person wearing it around day after day.
I’ve been thinking about suffering quite a bit today. Marveling at the way it is able to barge in and command the attention of the most seasoned warrior. Considering the capability it has to lay waste to all things bright and shining in a person’s life. In any of its forms and afflictions, pain can potentially devour the stoutest heart…
The past few days have been an arduous test of inner strength and coping for me. My pain scale is out of whack compared to the norm, I think, so I won’t try to assign it a number. Let’s just say it has been ‘up there’. It’s nothing new and certainly something I’m usually adept at dealing with, but now and then it manages to make me want to stop in my tracks and curl up on the floor. That is typically the case when I’m in pain AND my empathy meter is in the red as I watch someone I care about suffering in their own private misery.
Having what is considered an “invisible illness“, I’m used to looking one way on the outside and feeling the complete opposite within. It’s actually a challenge I accept daily to put on a brave face and downplay my pain or symptom flares. Wearing that mask may not always be the best choice as it makes it more difficult for people to understand when the cracks start showing… They thought everything was fine – I seemed like I felt okay! It also increases the ‘invisibility’ sometimes.
People are fearlessly and tirelessly inconsiderate when lacking in proper information and understanding. There are a lot things that chronically ill people don’t want to hear – believe me, I’ve heard them all – but when you mask pain all the time, I guess it goes without saying that sometimes others won’t know anything at all about the private war being waged inside.
I’ve been in a lot of pain lately… although most people probably haven’t noticed anything amiss. I prefer to keep it that way, for the most part, but I can’t help but want to reach out healing hands to all the other people I know in similar situations even when I know they’re trying to hide behind a carefully constructed façade of “FINE”. I have loved ones struggling daily with physical ailments, psychological anguish, mental illness… They each go through bouts of misery and torment and I would offer them all a restorative potion if I could. This post isn’t about that, however. It’s about something much smaller in the grand scheme of things.
This post is about the responsibility we each have to offer support and healing to those around us.
There is so much negativity and hate in the world. Everyone you see is dealing with some sort of struggle that has probably taken root in the center of their lives – consuming, ravaging them from the inside out. Just because you can’t see someone’s anguish does not mean that it is not there. Just because you have struggles and trials of your own does not absolve you from being considerate of others marching along in their own grief and pain.
I’m not here to judge. But please remember that not all disabilities are visible to the naked eye. Not all pain is readily ascertained on a scale of 1 to 10…. And, unfortunately, not all hurts are healed with a kiss and a Band-Aid. Although that doesn’t mean we shouldn’t try.
My challenge to you, during this most festive and generous season of the year, is to reach out to someone who might need a friend. Someone that might need a shoulder to cry on, a companion to sit with, a confidante to vent to, or a caring hand to carry their groceries to the car. Take time to assess your own needs and care for yourself, absolutely! But bless yourself further by taking a moment to be the light in someone else’s day, as well. What may seem a small gift to you could be the greatest present of all in their eyes, and just because you are not aware of the impact of your actions doesn’t mean you shouldn’t choose them with care and compassion each day.
And if *you* are the one that has been beaten down to the point of lying curled up on the floor, please remember that people love you. People care. There are those that would give whatever they have to bring you joy and relief. But most of all, remember that YOU are stronger than you give yourself credit for. I don’t have to know you to say that I believe in you… and I hope you won’t give up the fight.
It’s easy to say I won’t cry
but I will.
And you knew that – you must know me too well, but still…
In denial, I thought it was all kept in hand.
My perception was off –
you must understand…
So I’m here in that place where
I swore not to be.
Waiting for you … seems you’ve left without me.
And my suitcase is full
with my baggage so heavy
thought I’d built up a dam – it was only a levee.
The water is deeper than my skills were prepared…
All this weight counterbalanced
is making me scared.
But this flood will recede
and you’ll do what you must…
Then I’ll quietly blow on away with the dust.
After serving my purpose, after serving my time.
I’m a figment of passion –
I’m the victim, the crime.
And your gaze moves past me
in this silence of space…
With no words I’m effectively
back in my place.
Observations from an artist, photographer, and dreamer…