It Won’t

It won’t be the day you leave
not the flashbacks in my head

It wont be the years I grieve
nor the voices speaking back

It won’t be the nights of black
not the dreams I wish away

It won’t be my cold turned back
nor the mornings in no one’s arms

It won’t be when the coffee’s cold
not the untouched gourmet meals

It won’t be as the clock chimes one
nor the unused hung up clothes

It will be
when I go back

to the cliff
you saved me from
— this time alone

 

~ Emily C.

6.27.17

 

 

Tide of Stars

Prayers at the shoreline to distant gods,
mantras and chants for mystery maker.
Dark matter ripples gently move her hair.

Evening storm retreats, trailing shocks strike
as parting clouds evaporate like dried tears
she cried once, for life’s loves, lives lost,

while tidal waves yawn on black horizon,
swallowing all with a smacking crash,
closing in upon her beach this night

until in dark consuming light she sees
tides of stars at her bare feet, collecting
along moondust sand with each lick of waves.

In her graceful aging youth, never to be old,
she smiles — the stars gathered in her palms
chime as diamonds might in a gathered dress

that flows along winds of time — which pauses.
One dainty swirl and scattered again, they fly…
in the distance, a shooting star aims for her heart.

~ Emily C.

 

6.25.17

Good Morning Glory

Good morning glory…
blinding white sun,
vines entwined round flowers
choking life undone

by nyctinastic summer blooms 
…you rise despite our hands
that yank and tug and pull,
removing you, none can.

But something must die
for you to grow.
Something must suffocate
for you to show.

Spread your slithering tentacles,
grabbing at anything;
all disappears
beneath beauty’s smothering —

A smile for you
is a smile for death,
for kill or be killed…
summer’s Coliseum contest.

 

~ Emily C.

6.24.17

No Answer

darkness rumbles in distant realms.

inner ear hears mountains moans.

taking steps on trampoline floor,

shaking when the wind shifts core.

thrown to the abyss against my wish…

…these walls have been carved before

their messages clear and clearly old,

alone I fall amongst long lost,

my screams only heard by sediment;

it crumbles in my turbulent wake,

but all I feel is my own cold breath,

exhaling gales in earth-scoring notes,

writing my story read by none,

except the stars when entropy wins,

when all returns to nothingness.

why does life matter?

I ask whom exactly?

no answer comes back.

all is black.

~ Emily C.

6.22.17

USS Vertigo

Hi, friends.  The cold virus I caught two weeks ago triggered a severe relapse into vertigo now going on week three. It’s a long story, but this is my 4th major bout in 7 years, the others each lasting anywhere from 2-3 months to over a year. When this one hit dead on with the cold, it prompted me to look back at my history to see the timing of the prior bouts.  Each was within 4-6 weeks of having been ill with either a cold or the flu.

The first bout in 2010 came after recovering from a chest cold. At the time, my primary doctor brought up labyrinthitis, which is basically swelling and inflammation of the inner ear (the labyrinth) where balance is controlled. I was told there wasn’t anything to do but let it run its course. It eventually went away after about 3 months, as is typical for viral labyrinthitis. I was not given any kind of vestibular rehab to retrain my brain. I went about life for the next couple years, better but still motion sensitive to certain triggers or environments.

The next bout hit in December 2012 about a month after the flu. Naturally, it was stress-inducing to be back in that horrible place. After many ups and downs with different doctors that year, it came to be suspected that vestibular migraine may be the culprit given my complicated symptoms, an MRI showing pinprick lesions that can be caused by migraine, and my past with classic headache migraine and my mother’s history as well. So, I gave up asking for help and felt I had to just deal with it on my own by avoiding triggers. I had one physical therapy session where he said since it was likely neurological there was nothing he could do for me. Quite a let down. So I never went back.

I went through the next few years status quo, not normal, not able to run or bike or swim without risking vertigo, or tolerate certain motion-rich environments, but trying to keep moving anyway.  Had stable periods, and moments of flares, but nothing like the acute bouts are in the first several weeks.

As some of you know, I had another bout over the summer, about 2 months long that more or less subsided by September. Then I had the rash of heart palpitations for the last 7 months, likely from the back to back stress events of the year. Those had finally slowed down almost entirely and I was feeling my old self starting to emerge, when I got sick with this cold and the vertigo hit.  Yes…I have said “Just shoot me now.” many times since.

It prompted me to ask for a new referral for vestibular therapy when I realized there’s a chance this is labyrinthitis and could possibly benefit from seeing a vestibular therapist regularly.  I found one online, who is not near me, and does not take my insurance, but was like an angel on the phone acknowledging all of my symptoms, was pissed at my neurologist for dropping the ball, not happy with the medical management, or lack thereof, I’ve been experiencing.

She is a highly trained, and extensively experienced vestibular therapist who deals with tons of people like me. She specializes in things like vestibular migraine and labyrinthitis.  She’s an action-taker like me.  She actually apologized for not having met me until now, wishing she had been able to see me years ago to prevent this getting to this point.

She administered many tests, and yet still didn’t do a couple that would have involved vigorous head-shaking because it was my first appointment and she didn’t want to send me off the cliff. She did a special test with black-out goggles and was able to detect nystagmus, involuntary eye jerking which is a telltale sign of vestibular disorder, and said, “No wonder you feel so bad!”  It records on video so she can study it and pass it along to other doctors on my case.

She believes I have vestibular migraine and suspected labyrinthitis that kind of flare up and aggravate each other, and/or some other inner ear damage from prior episodes that were not treated properly so that my brain could compensate fully. And so now, if a bad cold or flu, or some other trigger aggravates it, it can decompensate all that my brain had done to fine-tune and recover from the other bouts. So, basically, I need my brain rewired which will take a long time, money, and lots of uncomfortable work.

It is incredibly hard to function when I feel hungover all the time, when the house tilts under my feet, when I feel like I’m adrift on rough seas. Ironically, sitting still and not moving is one of the worst things you can do. The brain needs movement in order to compensate, so staying active is imperative. I’ve been trying to continue driving and walking the lake every morning and doing gentle yoga.  The two things I learned from the prior bouts was to stay moving and to try not to let anxiety kick in or it throws the symptoms through the roof. That’s tricky when the brain’s autonomic response to not knowing where you are in space is to panic and shoot adrenaline through your system, but I’m doing as best I can.

Next, is trying to get back to the ENT for tests to see if they can tell what’s going on in the inner ear. I saw him back during the second bout, but unfortunately the appointment happened during a rare period of about 5 days where symptoms lifted only to come back after the appointment. So he didn’t do any tests. Maybe now that I’m symptomatic he can see me again.

My apologies for not being here much, or reading much as screens, lights, sounds, basically everything bothers my brain. I will try to catch up in time.  Just imagine your worst hangover ever, but waking up that way every day, 24/7.

I know it will ease in time, as I’ve been here before, but I know it can take weeks to months. Hopefully, faster this time, and with help of vestibular therapy perhaps I can eventually work my way back 100% so I can reduce the chances of a random cold throwing me so far back in my progress. I’d really love to have my life back.

Thanks for your understanding and steadfast support!

Love, Em

Uncaught

I was the one you loved
but oh God, I couldn’t bear its truth —
to know you would
love me through
the worst

when only the best
is what I wanted to give you
when my weakest
was all I had

how could I fall
the way I had to
how it was coming, like it or not,
knowing you would
want to catch me

you see
I am uncatchable, 
unsavable

you, the warrior knight
never did I want to hurt you
through my hurt
through my certain demise
through not letting you love me

(better you don’t —

better you find a reason
to hate me)

as I will love you
from safe distance
far from where my pain

might taint the treasure

of your heart

~ Emily C.

6.21.17