Alzheimer's | Patient Commando

When you look right through me

Posted on December 19, 2012 by Chrystal Gomes

What evil disease is this, that would

steal the recognition of a loving daughter from her darling mother’s mind?

With love so strong and infinite, how could

a devoted mother suddenly go so far beyond, leaving a part of her heart behind?

So often you look right through me

as though I’m not here.

And as I wonder when you will again see me,

I become paralyzed with fear.

Each time you look right through me,

a jagged knife plunges into my already shattered heart

because although we’re together, we

couldn’t be further apart.

Although you look right through me

not knowing who I am, I will never forget you

or all that you have done for me.

And I will do everything I can to help you.

Whenever you look right through me,

please know that right here I plan to remain.

Forever by your side I promise I will be,

trying desperately to reunite us once again.

But the truth is – every time you look right through me,

another huge part of me dies.

Forever lost in eternity.

Unseen, like my unheard cries.

A New Chapter

Posted on December 19, 2012 by Chrystal Gomes

No spoken promises now. No

written guarantees

that what once was, will again be so…

and I get down on my knees.

I cling to my memories of yesterday,

dreading the day when uncertain tomorrow comes.

As always, weariness has a say…

and I fall asleep to the sound of fading drums.

I dream such hearty, rose-coloured happiness

that in reality is so hard to feel…

for in this world rules weepy sadness,

diagnosed truth, that makes fear so real.

Fate has no conscience, and it always gets its way.

But when I shut my eyes,

I see only what I want to see. In the grey

abyss between life and death, my spirit lies…

in waiting. A new chapter

of a carefully woven destiny

gently unfolds in silken scenes filled with laughter…

and my soul rejoices, a wronged prisoner finally set free.

By Chrystal Gomes

Finding an MS Voice for Patient Centred Education

Posted on December 18, 2012 by Chrystal Gomes

By Chrystal Gomes

As an introverted and painfully shy person until my late 20’s – I often couldn’t find my voice. I spent my late teens and 20’s working, traveling and speaking just a little more often, while still unsure of serious future goals. At the age of 28, I finally realized I wanted to pursue a career in hotel and convention management, and my life was now filled with hope and excitement.

I had completed my first year of the three-year hospitality program, when I suddenly became seriously ill. Following a horrible headache that had me praying for death because nothing would relieve the pain, I developed double vision, my speech became slurred and completely garbled. I lost all hand coordination, and I couldn’t walk without help… to name a few of my many symptoms.

My parents naturally first thought…that I had started drinking. I sought medical help, and was subsequently diagnosed with Multiple Sclerosis. I shared this news with my parents and…we all started drinking.

I was diagnosed by a specialist who told me I had Multiple Sclerosis, then promptly left my hospital room without another word. This was the first time that the absence of adequate communication left me gutted. [...] continue the story

Tagged Under: Alzheimer's, chronic pain, Chrystal Gomes, comedy, depression, faith, hope, MS, Multiple Sclerosis, patient centered care, patient centered education

The Portrait: Simple Yet Complex, Obvious Yet Profound Part 1: The Eyes

Posted on August 27, 2012 by Patient Commando

By Judith Leitner

Over a century and a half ago, most folks were unable to create tangible visual links to their past. Many lacked the financial means necessary for creating pictorial inventories of themselves and their ancestors through the pricey art of Portrait Painting. Then, in 1839, Charles Daguerre in France and Henry Fox Talbot in England both announced that they had devised a way to ‘fix an image’, and the art and magic of Photography was born. With its affordable price tag, this clever novelty would enable everyman to express a primal, compelling need: to record, share and collect memories in pictures.

Cityscapes and still-life studies were the focus of the earliest photographic endeavors, as both subjects tended to be immobile during long exposures. Portrait photography evolved swiftly and concurrently, as technological advances in optics and chemistry allowed for less extensive exposures and richer images. Studios burst on the scene to accommodate the torrential parade of everyman and aristocrat alike. Since then, we’ve been voraciously crafting portraits and positioning ourselves in the ‘decisive moment’.

In spite of his deep ambivalence towards modernity and middle class values, the bohemian poet and art critic Charles Baudelaire allowed himself to be ‘mechanically reproduced’ by a [...] continue the story

Tagged Under: Alzheimer, Alzheimer's, art, camera, creative coping, dementia, detachment, featured writer, intimacy, judith leitner, lens, metaphors for illness, photography, portrait

Seeing Light And Shadow

Posted on August 18, 2012 by Patient Commando

By Judith Leitner

It all begins with light and shadow: opulent daylight softly slipping through a window and illuminating a lovely face, deep shadows stretching across wide valleys and cavernous crevices, dazzling light glistening on ice or crafting strange forms along sand dunes, elongated shadows within dawn’s emergent light and dusk’s fading glow, dense light within grey fog, mellow open shade on a bright summer day, harsh and calculating flash light in a dark room: these and an infinite array of other expressions of light and shadow are the primary shapers of meaning in a photograph. Indeed, the word ‘photography’ literally means ‘writing (graphy) with light (photo)’.

The first time I taught children to ‘write with light’ I quickly understood that all they needed – after a very basic intro to the camera and film – was a few lessons in exploring light and shadow. Outdoors, we wandered and observed how time of day, weather, open air and rooftop canopies informed qualities of natural light and shadow, and we played with the flash in daylight. The children were amazed when they perceived the ways their hats blocked light and cast dark shadows on their faces. Indoors, we looked at diffused window light, [...] continue the story

Tagged Under: Alzheimer, Alzheimer's, art, camera, creative coping, dementia, detachment, featured writer, intimacy, judith leitner, lens, light, metaphors for illness, photography, power of the arts, shadow, speaker