Friday, April 29, 2016

A new voice

Something exciting happened today that is going to change for the better the way I communicate!! After a 19 month wait list, today was my first appointment at the ICAN centre at the Glenrose rehabilitation hospital .  They specialise in augmentative electronic voice communication.  The past few years since spoken communication has become so tough for me, I've  patched together my own alternative communication methods (ie writing on a notepad, using an app on my phone with an electronic voice etc), but going to the experts is so much better.

  Today they've loaned me this fancy communication device to trial.  If it works out as well as I think it will, I can maybe get one to keep.   It has an electronic voice that can adjust on volume and speed, as well as has word prediction and saved conversations that will help me communicate faster.  It can also access the Internet and do a bunch of other neat stuff that will help  me both with verbal communication and even writing stories.

Isn't it wonderful to live in this day and age of technology?   My life would have been truly different if it was just 20 years ago and I was facing this.  For so many thousands of years,  people with speaking disabilities were silent. How many through the ages have sat quietly in homes the world over as their lives passed by in silence because the barriers to communication were just too high?    How many great ideas and wonderful connections have been locked inside the minds of those who could not verbally communicate?

It makes me want to tell the stories I tell in their honour- my silenced  brothers and sisters who've lived and gone before me. To those who did not have the incredible gifts of communication I've received.

  To have an electronic voice when my own physical one is not an option is a gift I won't ever take lightly.

Wednesday, April 27, 2016

Song of the cherry blossom

On a neighbourhood ride yesterday  morning on Sophie  (my power wheelchair) I came upon an early blooming choke cherry tree with stunning, ethereal blossoms.

One of the best things about being an amateur,  bumbling  artist is stumbling across the true beauty and immensity of design in art created by a True Master Artist.   The Master's  art doesn't just delight- it story tells. It spirit touches.

I can say nothing less about these blossoms,  simple as they may be.  In the true gift of the beauty in the ordinary, these blossoms breath perfumed  beauty into a world pain- wracked. For a moment too brief it is a right for an earth too often wronged.

It tells a story that if only we listen could take us down a path to the Artist Herself.

Who is this Artist?  Some may him God, others call her Spirit.  To some the Artist is Life itself, while others see not a being but process.

 Whatever the name, the art speaks for itself.  My own mortal spirit can do nothing but pause before it, wonder -bowed. My soul shouts: Hosanna!  Echoing the song bursting forth from blossom to Artist- Creator.

Saturday, April 23, 2016

Hyacinth blue

Have you ever felt a strong preference toward a certain colour?  If you had to describe your personality in any shade, colour, or hue- what would it be?

For me, it is hyacinth blue.  If ever there was a colour that describes who I am on the inside it would be the vivid purple- blue of the spring hyacinth. Solemn and quiet. A crescendo of deep emotions.

On occasion, the hue of who I am darkens- turns the colour of the ocean moments before the sun crawls down into the depths. Silence may glaze nightfall's surface, but underneath the hidden under worlds of the sea churn. The ocean calls out to my spirit like a mother long lost, whispering of the time when humanity's roots once nestled in her depths.

I've long had an intuitive sense of self, drawn to the deep blues our world offers. However, for many years, if I could have chosen, I'd probably have picked for my soul to be the bright vivid yellow of a gorgeous late-August sunflower.

I believed if only I could emulate the sunny, energetic, extroverted, ever confident personalities I saw in others, that I'd become good enough to be accepted as I was.

That I don't have the sunniest of personalities seemed like a terrible secret to be hidden at all costs. I felt deep shame. Even now as a mother in my thirties, I still sometimes really struggle with this.

But overtime, my journey has taken me towards peace. It took a long time, but finally I began to accept myself as I am, to see there could be worth--beauty even-- in a personality that is more contemplative than vivacious, more quiet and introspective than life of the party.

I've come to love the unique inner beat to which my spirit dances. It took me a long time to realize there is as much beauty in the gentle sound of wind rustling through an old tree as the joyous song of a spring robin perched in it's ancient boughs. It's just a different kind of music.

I like feeling things deeply--it has has caused me to develop a rich inner life where I question everything and take little for granted.

I'm sensitive to so many things- both pain and beauty. My hope is for the pain I live with to develop within my heart an empathy for others who hurt.

It has also been a catalyst that's drawn me towards beauty, to develop an appreciation for and connection with the beauty of our natural world.

                                      It has set me on a journey towards peace.

What about you? What colour describes who you are inside? Can you relate to feeling the need to be someone different than who you really are inside?

Thursday, April 14, 2016

Grandma Jean Schentag

 Some gifts come wrapped in shiny packages, bedecked with elegant bows. Others come in human form, an unexpected outpouring of love and sacrifice.

 I was witness to just such a sacrifice of love this past week when my grandmother- aged 98- flew up from Winnipeg to visit.
It was not easy for her to make this big trip to Edmonton at the age of 98. It took incredible effort on her part, but it meant everything to my family and me to see her again and share this special time with her. She is quite a spunky, special woman.

One of my biggest goals in life right now is to get my health situation to a strong enough place that I (and Eric and Samantha of course) can fly down to Winnipeg to visit her in her home town!   I told her I am going to print out a photo of her and put it on the wall and look at it every day to remind me to keep focused on this goal.

I asked her if she would ever consider moving to Edmonton, but she got a spunky grin on her face and told me she'd lived in Winnipeg since 1936, when she left her family farm at just 18 years old and she wasn't about to move now! Winnipeg is her home.  Can you imagine the changes she's seen in the city over the past  81 years?

I just bid her goodbye, and while my eyes are overflowing with tears, my heart is full to capacity with love and gratitude.

Thanks for coming to visit Grandma Schentag!  We love you.  I am so thankful for the privilege and gift of being your granddaughter.

Grandma and me circa 1982

Wednesday, April 6, 2016

The dramatic music of earliest spring

Here in Edmonton, the natural world is still mostly various shades of dried out brown, juxtaposed against gorgeous blue Alberta skies . However ever so slowly, tiny sprigs of green have begun to dance to the dramatic music of earliest spring.

It reminds me of the beginning stages of a great theatrical performance, that glorious moment when the music has just begun and the first dancers swirl onto the stage, and you sit on seat's edge in captivated wonder.

Over the past week, little green shoots have begun to appear. I was especially excited a few days back to discover that suddenly tiny blue flowers have sprung up by the side of the house.

But, I was also discouraged. You see, my favorite type of     photography is what I call minuscule perspective photography.  I love to get ultra up close, trying to discern the tiniest parts of the whole. It amazes me always at the small scale of beauty that we miss as we go through everyday life.  It takes my breath away to photograph a leaf or a bud or an ant or a dragonfly and to finally have my eyes and spirit opened to its true, miraculous form.

But as each day progressed and the tiny blue flowers, the first flowers of spring, grew into a joyous cluster, like they were having a family reunion,  I grew increasingly discouraged.I couldn't get to them to take pictures! They were a garish thorn in the flesh reminder of my pain and struggles.

 For months I've been slowly recovering from an injury that makes it hard to walk.  Trying to walk over the uneven 3ft patch of grass to see those little blue flowers was absolutely impossible, much less bend down nose to nose so I could take a close up photo. So as each day i wheeled down the sidewalk in my wheelchair I grew increasingly wistful.

Finally last night I determined perhaps their must be a way... and I found one!

My upper body is very weak due to my 16 year oddesy with a chronic pain causing health condition- probably my strength is in the less than 3rd percentile for a woman my age.  But then again a few months of wheelchair wheeling inside my home has built up my arm strength a I decided it was worth it to try and see what my upper body could do.

While holding onto the bottom stair on our front steps, I carefully lowered myself to the ground, . Then by partially crawling, dragging myself, and semi-rolling in a most undignified, non-35 year old mother of a teenager way...  I made my way toward those flowers, pulling myself inch by inch with my newly stronger upper body.

And I made it...nose to nose to with those flowers.  Spirit to spirit, created being to created being.

And I realized two things.
1) Those flowers that looked so blue from afar are actually a delicate white with   darling powder blue stripes.
2) My body and abilities may have changed.  My spirit hasn't.  I'm still the same creative, kooky, eccentric, determined, plant-loving Jenna.  I'm still here, me.  For a while I wasn't sure.  Now I know I am.

Monday, April 4, 2016

Pain and beauty

Pain has been a part of my daily life for so long that I can barely remember what it was like not to hurt. Having lived with a condition that causes severe chronic pain for over 16 years, pain is part of the landscape of my life. I don't want it, I would never chose it- it just is. It is as present in the integrated experience of my humanity as is the vision that comes through my eyes and the sounds that enter my ears.
Some nights are so hard that it takes my breath away. These are the times to hold on the truth that not every moment is as challenging as this one. And to remember that beauty and good always are part of life, even on the hard days. That is where art comes into the picture for me. I'm not a traditional artist. I rarely paint or draw or sew or knit. I don't collect cans and turn them into creative collages. Instead my art is in discovering, finding, and reveling in the natural beauty of our amazing world. The earth is my canvas.

 My goal is to seek out beauty and good as much as I can in life- I think that is one of the gifts that can be found in living inside a body that is so intimately acquainted with pain. I hope also that it opens my mind and heart to an awareness of and compassion for the pain and struggles of others. And reminding myself that beauty co-exists with the pain helps my spirit grasp onto gratitude.