Jump to content
    • VACCINE RECOMMENDATION:  DINET encourages all its members to receive the vaccinations and boosters for COVID-19, unless specifically advised against it by your medical provider.  To better understand the virus, the vaccine and the effects on people living with dysautonomia, please watch Dr. Svetlana Blitshteyn's video "COVID-19 and Dysautonomia"

Drowning in the wake


Rachel Cox

2017Q2_DrowningintheWake.jpg.390a2a7a06479f06014c34cf94127a48.jpg

From the editor:  The following is a turn from the style and intent of our usual content . This is a creative writing piece about the sensations and experiences of one woman living with dysautonomia 

I hear footfalls, voices.  Light shifts the shadows on my eyelids.  But I cannot move. I am suspended, somewhere between asleep and awake. Is it night? No, I can feel the warmth of the sun, a band of warmth pinning my legs to the bed.  It slides through the window, deceptively light. How does it imprison me here, a concrete statue, prone? I try to lift my head but it won’t move; my mouth will breathe in, breathe out, breathe in, but will not make words.  I cannot cry out.  I try to calm myself by listening to my heart; it is panicky fast, I try to slow it down with my mind. Count it out. Calm down. Settle, girl. You’ll be alright. I listen, numbed, to the sounds of people who cannot hear me. The air is heavy, thick with exhaustion. Gravitational pull beckons me deeper into the mattress, further into the earth, I am sure I can feel the world turn, I am deep enough in to hear the thrum and lullaby of life itself.  I acquiesce. The grey forgetfulness of sleep is soft around me.

The morning waking is difficult, always a transition of struggle. At first I become aware of myself again; the feel of the sheets against my skin, the ambient sounds around me. I check to see if I can move. And then I am wading out into the waves of waking, pushing my legs against the tide of light and life. Daylight foams around me.  The cold air smarts against my skin.  I am fighting to stay upright on the shifting sands, eyes open, forging forward into the wakeful time. Into the white light of morning.

“How are you today?” he asks me, hopeful.  Hopeful that today might be one of the good ones. I always know, in this moment.  If the waves of wakefulness break high and the sea spray drowns out his voice, I know that I am in the path of the storm for another day.  If the seas are calm, and pushing into the day is easier, I might smile, roll onto my back and float into the sunshine.

Becoming vertical takes time. Walking the short distance to our bathroom is like controlling a marionette from the rafters.  The strings are loosely tied and my gait comical. My legs are heavy and unresponsive in the mornings. The messages seem to take so long, the feet on the ends of my legs don’t feel like they are owned by me. They drag.  I walk by employing a swing and heft of the hips. I keep my head down, hobbled over, reaching for the walls, doors, furniture. As fast as I can I swing and shuffle myself into the bathroom and sink down onto the toilet seat; head on the bath to still the oscillations of vertigo and nausea.

I have learned to take the mornings slowly. To find the gentlest pathway into the upright world. It isn’t easy to stay afloat among the surging tide and rush of a busy family. They are preparing to cast off from the jetty, speed boat engines revving. I tread water, take my medications, open my arms for morning snuggles before the children eat and dress. I manage my horizontal hairdressing duties and tie adjusting. I am the director of movements while my husband shoulders the load. I am the strident voice of mother; teeth-brushing reminder, final inspector.  And then they are gone and I sink into the peace of my quiet house, letting the day arrive on my time scale. Letting what will be, be.

When finally, my head has given me more clear stretches than dizzy, I swallow back on the nausea and swing my legs out of bed for the second time. I sit there for a bit, bracing for the stand.

I am surrounded by the water.

It swings strong around my legs, trying to pull me under. I kick, cycling against the current. I will not drown in the wake. Not this day.

 

Image credit: Ivan Aivazovsky (Armenian Painter) 1895

 

 




User Feedback

Recommended Comments

This piece helped me feel less alone. I know that I need the science, the evidence-based info to help me understand what is happening to my body, and maybe, just maybe, maintain or improve my health. But I need the creative, the descriptive, the Art, just as much - if not more - to remind myself that other people are living this life, too. So thank you. 

Share this comment


Link to comment
Share on other sites



Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Add a comment...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...