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.
Observations from an artist, photographer, and dreamer…