In the end there is one dance you’ll do alone…..

in the end there is one dance you_ll do alone

 

For a Dancer ( by Jackson Browne)

https://www.facebook.com/OfficialJacksonBrowne/

https://www.gofundme.com/saving-janavi

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Saving Janavi

https://www.gofundme.com/saving-janavi

I am taking care of my sister Janavi who has been ill and in terrible pain for 6 years.  Her condition has been diagnosed as Complex Regional Pain Syndrome and Internal Adhesions.  When she came to live with me two years ago she weighed 97 pounds.  We improved her diet and her weight peaked at 115 pounds.  But she has gotten worse and now she shakes so badly that she can barely eat even though she is hungry.  She weighs 93 pounds.  No one has been able to help her, and I’m afraid that she is going to die.

Janavi has no pain relief because she gets dangerous reactions to most pain meds.  She is still looking for a solution.  She’s never given up.  She wants so badly to just have a normal life and do things for herself.  She hasn’t been outside for over a year, except for two ambulance rides to the hospital.

The main purpose of this fundraiser is to find ways to substantially reduce Janavi’s pain.  Most of the things we have to try are not covered by Medicaid.  But we need to move forward because her symptoms are getting worse.  She needs to see a practitioner who does not take her insurance.  She wants to rent a Bemer machine to see if it will help (this technology was highly recommend by a close friend who is a doctor).  And if it really helps, I want to actually buy one for her.  I’d like to connect her with a group that tries to solve medical mysteries.  And I’d also like her to get genetic testing.

A secondary purpose is help with her ongoing expenses.  She is disabled and can’t cook for herself at all.  She needs home care but Medicaid will not pay for it because she is not completely helpless.  Janavi tries very hard to do things for herself even though it is very painful for her so I don’t know if Medicaid will ever pay for her home care.

https://www.gofundme.com/saving-janavi

I am taking care of my sister Janavi who has been ill and in terrible pain for 6 years.  Her condition has been diagnosed as Complex Regional Pain Syndrome and Internal Adhesions.  When she came to live with me two years ago she weighed 97 pounds.  We improved her diet and her weight peaked at 115 pounds.  But she has gotten worse and now she shakes so badly that she can barely eat even though she is hungry.  She weighs 93 pounds.  No one has been able to help her, and I’m afraid that she is going to die.

Janavi has no pain relief because she gets dangerous reactions to most pain meds.  She is still looking for a solution.  She’s never given up.  She wants so badly to just have a normal life and do things for herself.  She hasn’t been outside for over a year, except for two ambulance rides to the hospital.

The main purpose of this fundraiser is to find ways to substantially reduce Janavi’s pain.  Most of the things we have to try are not covered by Medicaid.  But we need to move forward because her symptoms are getting worse.  She needs to see a practitioner who does not take her insurance.  She wants to rent a Bemer machine to see if it will help (this technology was highly recommend by a close friend who is a doctor).  And if it really helps, I want to actually buy one for her.  I’d like to connect her with a group that tries to solve medical mysteries.  And I’d also like her to get genetic testing.

A secondary purpose is help with her ongoing expenses.  She is disabled and can’t cook for herself at all.  She needs home care but Medicaid will not pay for it because she is not completely helpless.  Janavi tries very hard to do things for herself even though it is very painful for her so I don’t know if Medicaid will ever pay for her home care.

This is a photo I took of her two years ago
30336320_15280068020_r.jpeg
This is Janavi currently, weighing 93 pounds.
30336320_1528488374813225_r.jpeg
I love my beautiful little sister.  I want her to get her life back so badly.  Please help me save her.

===https://www.gofundme.com/saving-janavi

Our God-mother wrote this for Janavi last month:

A graduate of Goddard College where she studied poetry, photography and media, Janavi Held was an up-and-coming writer and photographer when she was stricken at age 46 with an illness that now, six years later, is still debilitating her so that she cannot walk up or down stairs without help, she can only walk short distances around the house, and can only stand up for less than a minute at a time, sit in a car, or cook. She made the usual traditional medical rounds, tests, consultations and treatments, plus sessions with a myriad of healers and herbal remedies, but to no avail. Her condition has been labeled Complex Regional Pain Syndrome and Internal Adhesions, but nothing has been able to ease her constant pain or progressive weakness.

Please give what you can share the link widely. 

Last fall her condition worsened, the pain increased and her weight plummeted to 95 pounds. After an ambulance ride to the hospital, a forty-eight hour stay and a whole battery of tests, she left the hospital in worse pain; they could do nothing for her.

Twenty-six months ago her sister Sue took Janavi her into her home in Colorado and set up a bedroom for her. Sue works full time but devotes much of her time to Janavi’s care. Because of Janavi’s worsening condition (she can barely walk at all, is in constant pain, and using her arms has become very painful as well), they have been forced to pay a home care agency to take care of Janavi and support Sue with other household tasks. In order to pay for home care and cover incidental expenses, as well as uncovered medical expenses, they need at least $15,000 a year. Sue’s salary cannot cover this additional cost. The only coverage Janavi has is Medicaid.

Janavi is such a talented, spiritual soul. During these years of her illness, Janavi took refuge in her practice of Bhakti yoga which she had embarked on when she was nineteen. Her faith and persistence enabled her to write Letters to My Oldest Friend, a book of poetry and photography.  This book of poems and photography that she produced in the years since her disease struck are so beautiful. In 2017, two of her poems were shortlisted for the prestigious Hamilton House International Poetry Prize and where included in a book entitled Eternity.

Now, she can barely type or read because of the persistent pain. These sisters, whose parents are gone, need help in order to survive.

Janavi refers to me as “her fairy godmother.” Oh how I wish I had the power to disappear her pain.  ~ Marcia Newfield

I’m Still Here

EDITOR’S NOTE:

(re-posted from: https://womenspiritualpoetry.blogspot.com/2018/06/i-am-still-here-by-janavi-held.html)

This was composed by a very gifted and beautiful soul: a regular contributor to our poetry project, and dear friend of mine, Janavi Held, whose life is gradually being taken from us by an incurable illness. She has been suffering from Complex Regional Pain Syndrome and Internal Adhesions for six painful years now, and neither her insurance nor the government healthcare will help her. She reaches out to us, her sisters, as a last plea. This is a poem she wrote yesterday on her birthday, in which she offers us the gift of her friendship. May it touch your generous hearts and inspire you to reach out to her in her plight.

Dear Friends,

The last time I was able to leave the house was by ambulance on my way to the hospital. After many long hours in the emergency room I was admitted and taken upstairs. After everyone left I sat on the hospital bed, knees to chest, bracing my body against the pain and trembling.

The light of this cold day was fading. I turned my eyes to the large window, a window I hadn’t seen before, as it seems I’ve been looking out the same window for years; at the same trees and sky and flowers, the seasons changing and rolling by, folding into each other. But, this evening as I gazed out this new window I tried to look beyond the gray of the hospital roof in front of me, I looked as far as I could see out at a bit of sky and the dimming, blue, winter light. In the distance the I saw the ever-faithful view of the Rocky Mountains also dressed in blue sparkling lights, and white sparks of snow and ice glimmered in the the fading light. Now –in this quiet moment– wet, warm tears rolled down my face as I remembered a line from a poem a by a dear friend:

“Unveil yourself of your flesh shield/and let your spirit out into the dance.”

I cast my glance into the wind, chasing after it, and the beauty of the fading light, as I felt the dingy walls of the hospital collapse. And for a moment I was free. Weeping sweet tears I feel asleep.

When I was nineteen and took up the practice of Bhakti-Yoga, I was told by a dear friend that in ancient Vedic times gifts where given to others’ on one’s birthday. So, today I give you the gift of a poem about friendship.

I AM STILL HERE

Life speaks in turns

and listens

love comes out of season

even unbidden

and I find in you

a love that stays

long after

the light has gone away

and flowers have closed

their precious eyes

I am still here alive

listening to the sounds

and sometimes the cries

and visions of your life

you’ve shared

with me they drench

my eyes

with your sweet smile

in you I see the heart of

mother earth

as you have loved her

from your birth

she sings through your eyes

and dances in your heart

as you write and paint and

dance your life into art

to you my friend I lend my heart

for life

for I treasure Yours

and keep her safe

where time does not decay

and love never falls away.

~

(I wish I could write more, but I can’t type well anymore; these words were dictated).

My Sister Sue, my God-mother, Marcia, and my cousin Erica, have started a fundraiser. If you are inclined please share the link widely, we are dependent on all of you to spread it around, as our resources are limited. Click this link to help. We would be most grateful.

Wishing you all peace & much love

~Janavi Held

Janavi Held started writing poetry and wandering around with her father’s camera as a child.  At the age of nineteen, she began practicing Bhakti yoga. She holds a bachelor’s degree from Goddard College where she studied poetry, photography, and media studies.  She is author of Letters to my Oldest Friend: A Book of Poetry and Photography and in 2017 two of hers poems were shortlisted for the prestigious Hamilton House International Poetry prize and were included in a book titled Eternity. Her poetry also appears in several anthologies that emerged from the Journey of the Heart Poetry Project, to which she has been a regular contributor, and is featured in the Bhakti Blossoms anthology on poetry by contemporary women in the Bhakti tradition.

*For submission guidelines, click here.*
Janavi held.jpg

Broken

Broken

Too fragile
for animation,
sentience,
breathing.

Inside walls
of bones
everything shatters,
infinitely.

A discovery of old roots
traps my present tense heart
which weighs a burden of foul words.

It has known too much-
it breaks at night
and smiles brashly
to the daylight
not showing its broken curves.

And that scale, sinking
wants to close
all entries and doors.

The Ice Tree and mother Earth

Time Unhinged

Video with spoken poetry below


Hope

 

Time Unhinged

Dreamt of exterminated images,
and forgotten doubts,
of unhinged time
with the hollow

of silent bones
thundering
in the wake of restless flowers.
Blinded by

a vigilant morning
I enter the mists of loneliness
seeking laughter and daydreams
(to counter the emptiness)

too long for counting
these days
press down
on my chest

cementing the architecture
of my sad inheritance.
I establish hope
burying her under

the obliging tree
in my back yard.

 

Flooding

Flooding. jpgThe Sky in the heart.

Flooding

Within the
shadowy waters
of illusion
I built thick
castle walls
sunken deep
in those hazy waters
my heart froze
and slept for eons.
Awakened from this
deep sleep of ignorance
by a flood of
Your liberating
monsoon rain
You’ve opened the sky
in my heart
and the
walls of my fortress
are a sunken wreck
I have floated
to the surface
waves
crushed my body
as I rose You
carefully collected
all the lost parts
and knitted me
together with
Your lovely hands
saturated with
eternal love.

~ Janavi Held © 2017