Monthly Archives: April 2016

Poem – “Just Walk Away, Susan”

Those sidewalks grey, cracked, smooth, sliding by, cobblestones, gravel, grassy paths

They won’t see me anymore

They won’t have my feet upon them, my boots, my sandals, my stop, my go

Dusty, gone, absent from me,

My smile or my hellos once easy on my face, have seen their day

Like many before me- we go

We stay, we live, we skip, we run, we trudge, we hide our face against the stinging snow beads

We sweltered in the heat, moving slowly, fluid

We hugged, we walked on by

My time to do that is over

I do not think you’ll see me – streets, roads, pavements

My smile, my laugh will not me there, nor my wave

Our time comes

Our time arrives

It is here

Our times go, our times fade, our times end.

SJM
September 2015

A Peek Back – Thank You, Denial

The Very Early Days Post Diagnosis

Rather than a proper Blog Post or ” Reflection” for April, 2016, these sharings will include a journal entry and a Poem,again written approximately six months ago, that we will now commit to Low Tide Reflections. This generally captured some of my initial feelings and thoughts early on and express a brief account of my feelings two weeks after confirmation of ALS, Bulbar Onset.

Secondly, is a Poem I wrote during this pensive and gruelling time, seven months ago, that I feel to share. Most of us have these kind of moments during life’s bleaker days,I would guess. The Psalmist David did, so that does not translate into total pity party time. ( Besides, there is a place for so called ” pity parties ” every now and then!) . To me, it is just part of the honest human experience.

This reflection may not be for everyone. You may feel disgusted by the outlook I had on those days. Faith is not sunk or thrown away when humans whine, or cry, lament,beg or bleed. Faith is not a fairy tale wish. It is not karma or a special little combination song,dance, and based on human effort or ego. So in that light, I share, confident that this is a road, a journey, Rocky by times- encouraging at others. The road is not always bright and gleaming.

Faith is much deeper and sturdier, even if we do not feel it in action at certain times . It , grace and mercy, will and can stand the test of Time and yes, we need to participate in the Faith Factor. However, when any of us take a moment to state how we truly feel at tumultuous times, with a glimmer of hope behind that scene, it gives permission and comfort for others who need to connect, vent, and allow some of the ” overwhelming – ness”, a made up word, leak out so some light can, in turn, can make it’s way through.

– Thank you, Denial –

Some say denial is just a protective device the mind uses to block horror and fright- for a little while. Makes sense now to me. Kubler Ross plants it early on in the grieving process or the mechanics of loss, terminal illness ” acceptance” . Although some of her work has been long time challenged, revised, built upon – by others in the death, shock and awe or awful game of “coming to terms with”….her writings and research still make sense and add some frame of reference to this life and death experience to the percentage of us who are not killed in an accident, die of old age, or sudden mishap but are given a diagnosis of life leaking out slowly or crippling us, dumbing us down, reducing us to a self we never knew- not our former selves – of course – but a self that winks at us in the mirror telling us yeah, it’s still you, you’re ok- ” hey, I’m here till the end..there’s no getting over me..until the end.”

That body and face , the verbal communication, if you have that ability left, does not ring familiar to so many of our loved ones. It is nothing novel to say that our nearest and dearest do not treat us the same as before. Our position or role seems to get claimed or usurped – no wonder. Many think they know better than you and maybe at times they do, but surely not all the time. If you ever ” talked down” to someone, then be sure your sins will find you our because you will be talked down to frequently, but those who once were eager for your opinion, or those who listened to your guidance or argued against it- but at least you spoke, had some parlay , were an active person in their world , in the world. Much is done in love, in desire to help and to block their own fright.

I have been there myself. I might now pride myself on being sensitive and an effective listener, in the past and perhaps still, but even I grew weary. How much more will others who never hit this gully of death of their family member up close and personal ?

My family and loved ones are stellar— but how can I drag them, unwillingly myself, through this? I want them free of this. If “it” cannot be freed of me, and must tangle me, then not them, please. It is me, Susan, God and I want them freer and clearer of this.

It has been a week and two days since I was clearly diagnosed with Motor Neuron Disease ( ALS) via the EMG test at the New Halifax Infirmary. It occurred Tuesday, August 25th., 2015

Journal Entry – Sept 3/15
Susan Jefferies-Murray

Check out my poem, “Just Walk Away, Susan“. I wrote this during the first week of September 2015.