Tony or Svetlana or Somewhere in Between

An early episode of The Sopranos stands out to me still. It occurred right around the time Tony’s mother was sick and dying, or had just died. Tony’s mother had a Nurse – Caregiver who later worked for his Uncle (Uncle Junior) during his ongoing health declines. Svetlana Kirilenko was the nurse. Svetlana was Russian. She had suffered a leg amputation but refused, in her very matter of fact manner, to allow this disability to interfere with her hard-working way or her ambition to succeed, even modestly, in America.

Tony visits his uncle’s house one day after he had been in the hospital all night due to a family medical crisis and is a bit distraught or perplexed, for Tony, over the things he witnessed there. The chain smoking Svetlana was there doing some work on her crutches, but at his invitation, sat down on the couch with him. Her prosthetic leg off, possibly because she was alone and was more comfortable hobbling around in a fashion that suited her privately.

Tony approaches Svetlana with a type of respect, gentle choice of words, almost entreating a manner that was not often seen with him. He begins by saying how rough it was in the hospital overnight seeing all he had (of patients discomfort, pain and suffering). He asked almost rhetorically how do people do it…how does she do it? “Lose a leg and start making websites”, says he adding that she usually has a little secret smile on her face? (The prosthetic was laying against the couch.)

Svetlana responds, tongue in cheek, saying that this is the purpose of people like me to inspire people like you. But Tony presses on. “No really”…..?

Svetlana speaks her private thinking aloud saying that this is the trouble with you Americans. You think nothing bad is ever going to happen and when it does, you can’t handle it when the rest of the world hardly expects anything good to happen, and they are not disappointed.

Tony tells her that her outlook is pretty grim. She calmly says, that you (the collective you) have everything here but you still complain, complain. She tells him that you lie on couches, you think about your problems too much and you have too much time on your hands to think just about yourself. Tony continues to be intrigued with this “non- needy” Eastern European woman.

Later in another episode when he visits his Uncle, Svetlana is working at the kitchen table on her websites (I cannot remember what her websites were about but definitely legit business). Tony again makes reference to her dedicated attitude and focus despite her amputated leg and loss. With a little look of practical surprise, she simply tells him that her leg is not the first thing she thinks about everyday.

We see a sensitive Tony in these scenes, inwardly questioning the bigger questions of life or the fairness of life as well as a willingness to think about how others live powerfully, or push onward at minimum, without the type of power he has or that he takes.

We all know Tony is a flawed individual, who isn’t? The extent Tony has going on in his life, thankfully, most of us do not, but we are not exempt. However, he allowed and often stretched his greed, lust, retaliation to wreak havoc terribly unto others. The family dynamics in both senses of the words were interesting to watch, to me, despite his business dealings, but definitely through his own biological family, he loved or believed he did.

This is not about Tony or trying to get anyone to “like” him or the series, but it is about humanity and one’s struggle with right and wrong, conflicting values, complex feelings, ethical, religious and even spiritual quandaries, inner searches, man’s inhumanity to man, conditioning, sexism, violence, assault and how all that plays into power, offence, control and then a soft side surfaces with him, one so used to control feels out of control, or lost within moments of care and kindness, or in contrast, planned violent acts. The character of Tony offers much of that patch work quilt and other individuals like Svetlana challenge his “M O” and at times, he is tempted to abandon his usual self serving thinking, and life style, for awhile .

When my mind reached back to that segment from years ago, I initially thought how right, how strong Svetlana was. She is the practical, straight forward chin up type making the best of a painful, rough situation not only as best she could but better than most. Little can stop her. That seemed admirable- superior. Mind you, she still has a life to live as far as she knows. She spends no time on self pity. She had witnessed poverty, restrictions, little choice all her formative years and she refused to stay there…to her, people make the best of their plight. They do not dwell on it.

Tony, and many other ” Americans”, but let’s enlarge it to North Americans or the Western World, tend to be more shocked, blaming, incredulous when serious misfortune, great loss, unexpected death and events beyond our control befall us personally or hit our family. It seems a fair, natural reaction for us within our realities. We are less moved when tragedies occur in other lands, to people we think are quite different from ourselves, and have so little anyway we may think, or in some situations, we might assume helped to bring it on themselves.

When we see it, and experience it up close and personal, some of us are aghast, feel unfairly singled out-probably. Understandably because, in one small way, we live with so much – great expectations, ample facilities, great advances in medicine, education, security, choice, and sometimes our focus can major on achieving and success, however we or others define it. Many parents have said, “you can be whatever you want to be” or the building up of self esteem, strong individualism, self determination, (all good things in their place) but can become an obnoxious pile if taken to an extreme and we see examples of that easily today.

I tried not to say to my 4 kids that they could be any thing they wanted. I don’t believe, not certain on that largely because of other factors within our systems. By far I was not a perfect parent… trust me…while I, ‘lol’,. I wanted to be somehow. I failed in that goal. Most do. (All) I wanted and supported them to do well, do their best, know themselves, have confidence, to excel but never to feel “less than”, to know they are loved by me, by God. I wanted them to know they are as important as the Prime Minister’s son or The Queen’s daughter. However, they are not any more important than any body else. To me, yes they are, but don’t expect the world to treat you in that same manner.

Since mid February, to late April, my life and daily living became taxing and much more difficult. So many events occurred from six falls (one causing a facial fracture and mild concussion) or upsetting tumbles, to feeding tube placement and several related, painful complications, to frantic times when my growing needs and weakness, physical losses caused me anguish and suffering. The loss finally of my speech which had been seeping out more and more, partnered with more inability to eat or swallow the few items I still held on to, made me question this “scourge” upon me, even more. Marital tensions arose. We were psychologically strained to the max even in the area of communication, to name even the most obvious one. We both handled this “valley” very differently and there was no comfort, no alliance, no human place to run, most days during that timeframe. If I did, how would I express with no language that I was lost! I could not get back home, to me, to my loved ones as I had been? Wasn’t too much expected of me, surely? Bruce was out of his depth at times and too much was expected of him, too. People cared. People offered. My eldest son, back and forth to sea carried the brunt and load of the oversight of us heavily for several months. My daughter and our 2 younger sons, all sensed ‘things were off’, from afar carried each an emotional load of concern. .As parents we normally prefer to minimize even their adult kids’ woes. Likely we were not managing that well, either.

Two of my friends caught glimpses of situation we were in and tried to penetrate the walls. My sister, my brother tried and succeeded to enter into the cave, but we could not disclose fully how beaten we felt. We didn’t know the terrain ourselves. We had no strength or time to allow others to peek into this unspeakable mess called “our lives now”. What doctor nurse, helper could prop me up a drooling, weak, non verbal, non – eating, aging boomer who no longer could dress or undress herself, wash her own hair, brush her own hair, put make up on, stand up from most chairs, take off her socks, and could only now type with a thumb Could not effectively brush her own teeth. So panic, fear, franticness set in and with Bulbar ALS, the added feature of Pseudo Bulbar effect was diagnosed in me, as another delight. Anxiety was high. Getting dressed, going anywhere took hours punctuated with lengthy, unfulfilling tube “feeds”. Crying jags which in turn impacted my breathing arose: often inconsolable. Who on earth could help me navigate the new planet I was on? Where would I go for the need to be understood? Who do I run to for hope again? Within my faith, I could ‘run’ or “Go to The Rock” ….and with exhausted, joyless, faint hope, I did of course. I do. Nothing outwardly changed. I wanted to comfort and encourage myself with equal doses of self loathing and resentment.

So many people were praying for me. So many loving folks showed they cared. During the Bleak Hours, our church was reaching out, showed us love and strong practical support as well as friends, and even people we did not know for example through the On Line Silent Auction. People were steadfastly praying, but I kept slipping into more loss, more deficits. I felt ashamed, ‘less than”, set aside, going down, embarrassing. Praying was hard for awhile. Clinging on to the edge of the row boat in dense fog was all I could do. We kept up a type of facade, or maybe that is just part of living through a fire. How was God using me for His Glory….???

I knew well of the brokenness of Christ …of entering into His Sufferings but I am not a worthy subject for that and to what purpose? Lofty thought…eh!? I doubted that was the reason or God’s plan…To what avail? Why can’t He let me live and use me to care for and support and comfort others?

One very difficult Sunday morning, everything crashed down. I was a shaky tree branch, dead, having fallen off the tree. Emotions and physical needs were high. Our environment was not conducive to care anymore. With the help of my daughter in law I ended up in an ambulance after an assessment by the paramedics and in hospital for two days. While on the stretcher, beyond any shock that I was there, as somehow, it was the route to go, I submitted.

Between my own embarrassing sobs, calm collected under and over me. It was the inexplicable peace God gives. I was deflated and no longer cared how I seemed.

I was not Svetlana. I was a basket case who must be failing every “challenge”, every test. In more of a Tony moment, I was horrified and incredulous that this not only should happen to “Me” but that it continued on like a nightmare parade where each new marcher or float was more frightening than the last one.

Who wants such tests anyway? (If they are tests. I no longer cared or knew). I was tempted to accept the rigours of ALS and slide into it but I gripped onto some hope, some peace. The battle in my mind or in mind and spirit subsided for a bit.

While I was “all about me”, young men were getting slain on our communities’ streets. While I lay sucking on ice chips in Emergency, mothers and fathers were slipping into death, saying their final goodbye. Someone’s child was ending their Life, alone. A Suicide Bomber was blowing up a marketplace full of young and old, overseas. A couple was being told their baby was stillborn. A car accident was maiming a teen-ager and someone else was receiving a terminal diagnosis, alone. So many younger women and men I have had more awareness of, through ALS Groups on line around the world, with little children and teens still in their homes yet plagued with this “incurable disease”. My magnanimous world view and concerns for others was blunted then. Suffering all around was occurring. I had nearly fallen down the chute with mine.

I was in the general group but I was not alone. Such is life… this is life. I was no better, no worse. Sometimes our resources can only manage so much. There is a time to groan, weep even rail against our own misfortune and sorrow. “There is a time for every purpose under heaven.”

From the beginning of Low Tide Reflections, I said I would be honest, as best I could and not spin things always into a silver lining for the sake of being liked or sounding nice, or tying things up in a bow.

So suffice to say, some things changed for the better. Some things did not for a time but gradually began to improve albeit a rocky path and some happier solutions formed the next day. One day I hope to share on those surprising open doors. With Bruce on one side of the bed and Luke on the other, my limited typed communication in the middle, some fragile hope fluttered while mired in concrete. With timely and helpful medical intervention I began to rest and obtained a level of care to start afresh. Further respite times were set up for my husband as well as bit more nursing and home care help…. for me/ us.

Someone listened to us all and it seemed a few things needed to be spoken, some issues separated enough to perhaps encourage the start of a new effort. Hurt confusion, frailty did not Just depart… though but a Stop Sign was erected long enough to re jig a few things.

This above, I share because it is part of the new terrain. It must be part of the whole. It seems to be the emotional, the mental anguish, the spiritual map where you can easily get lost within the physical trauma- the body’s journey of rapid change. Sometimes we ARE a mess .

About a week later, I wanted to try a walk or a sit on the Boardwalk again. Bruce drove us down. As we were driving to the end of Ainslie and onto Shore View Dr to get onto Shore Rd. walking up from Shore Rd onto Shore View where we were was a lady on crutches. She was tall, thin and erect. I never laid eyes on her before in our neck of the woods. She looked at me pleasant without a smile but a friendly face as good as a smile. We caught each others’ eye. We held our gaze. She wore a short leather jacket. One leg was planted on the ground moving along with her crutches. The other pant leg was empty. The leg was gone and her pant leg for the missing leg was pinned up neatly fairly high above her knee. She looked well- fine, Serene, “ok”. Yes, she was real, not a phantom – maybe an angel unaware we were glimpsing. Bruce saw her too.

For me it was a soul to soul moment. She could not see visually my injuries, inner strife, and loss. One of hers was evident to me. My mind jumped back to Afghanistan, the young Vets wounded, some in a very visual way, some hidden, many both, as with a son of my own. It always alarms me to cycle back to those times. Still, instantly I thought of their guts and their pain, their fear, their endurance, the positions they were placed in. Was she a Vet? Unsure. She was younger than me but young enough to have been deployed – then? Not sure. Cancer, diabetes, workplace injury, anything could have been her story. I never saw her again.

She inspired me just by walking on her crutches, one leg down. I breathed that in.

Psalm 139:8

Susan
Early June/16

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.

The Queenie Instinct, Breakfast on the Beach, and Easter Reflections

We had a much beloved dog named Queenie when my sisters and I were young growing up on the Gondola Point Road, over looking the Kennebecasis River. I never knew a time before Queenie, as she was part of our household before I was born and was close in exact age to one of my sisters, Sharon or Jane but my guess is Jane. Memory does not serve me well with that specific detail. Queenie was part Collie and part Sheep Dog.( If I am incorrect on her exact lineage as she might have been part Collie and part “Police Dog” which was a common term for German Shepherd, my sisters will correct me later. Our brothers were either only babies when she died, or possibly only twinkles in our father’s eyes, as the old saying goes.

Girl&Dog_01She followed us everywhere, went swimming, leaped up whenever one of us strolled up to our grandmother’s house or across the road to the store with the simple invitation of “C’om Queenie “, wiggled and wobbled along with us of her own volition. She loved us unconditionally as dogs tend to do. Dogs slept outside on the porch usually, years ago, in good weather, under the shade of the trees during the dog days of August or in the house, right by the “side door” during storms or winter cold. I do not remember her wandering through the house, “the front room” or the bedrooms, but life, space, a “dog’s place” or habits, in our house, (cats too), were what they were, quite different from our grandmother’s farmhouse which had an abundance of cats, in the barn and the house, and one that was hot to trot and be “man about town” for most of the year, yet came home every Christmas. Nanny named him “Merry Christmas”, fittingly so. I remember being at Nanny’s one day in early or mid December, having heard this famous “Cat Lore ” surrounding Merry Christmas but meeting him only once, when meowing grew louder, not uncommon there. Nanny, who naturally opened the door to anyone or anything, opened the door and Merry Christmas walked right in like a long lost son – or like “Poppa was a rolling stone. Wherever he laid his hat was his home.” So yeah… I saw it for myself.

Back to Queenie: Regardless of where she slept, she was part of our family, our home, our fields, our days while much loved by mom, dad, Sharon, Jane and me, our cousins, our neighbourhood. Although she rarely, if ever, went into mom’s “good room”, parlour or front room, she did make an excursion to church one Sunday.

I remember sitting in the heat of the summer, drizzling away, on a Sunday morning on the wooden pews in the old, original Rothesay United Baptist Church, dressed in a frilly little, dare I say, very short by today’s standards for little girls ( and crinolines), dress. The familiar click clack of soft paw and tight claw pitter patters in the vestibule, as due to the heat the church door was wide open. Queenie’s tracks continued slowly, but curiously to the back of the church and right up the aisle. Mind you, she briefly stopped to check out a few rows, wagging her tail, here and there, but swayed toward the front of the church, towards the alter, towards the pulpit. We were mortified, while holding our nervous laughter back. Then came a few chuckles, laughs and giggles from our friends and a few adults, providing us the opportunity to giggle and to call her name, as she sought us out, wagging her back end while being gently led out. Some appropriate, kind word of humour was spoken by the minister, and a nice moment passed. It served as a good story and innocent joke for awhile. Some later remarked how Queenie ” Went forward” or that ” she wanted to give her heart to the Lord”- perhaps answer the call to the Mission Field…etc., etc. (those of you raised in certain denominational persuasions will understand those terms:)

One late afternoon and into suppertime, none of us could find Queenie. It was rare and very odd for her not to be either with one of us, sleeping on the porch, under a tree or just home. Of course we and others searched everywhere to no avail. Dog poaching was unheard of in our parts then, especially an older family pet, but did she go wandering and albeit, rare but conceivable, could a trap catch her leg or foot ? Our father came home from work and still no Queenie. I am not sure what transpired or how dad knew what to do, but he, one or both of my sisters, a band of friends and cousins, along Dog_01with our Uncle David, perhaps a friend’s father, too, began a sensible search that resulted in finding Queenie laying on the ground within a little wooded alcove far off the higher cow pasture. Although we ceaselessly called her name throughout, even close by to where she lay, she did not whimper, bark or get up to greet us.

The men fashioned a little stretcher or pallet from branches, or whatever else they had, along with the knives or pocket items most carried then and carried the weak, compliant Queenie home. Queenie was thirteen years old, I was reminded, old, tired and not well. This was a blow to my imagination. Was she going to die ? Why can’t we help her or make her better ? Why would she go away just when she must need us the most – when we could love her, comfort her ? Did she have no confidence in our dedication and didn’t she know she was part of the family ? It was a confusing mix of feelings. Maybe we felt momentarily like heroes for finding her, or such a loving crew, which we were, for securely bringing her home where we thought she belonged but Queenie’s eyes were, in their weariness, in my young mind, pleading for something else. She was not elated that we found her or eager. If her tail wagged at all in her weakness, it was barely a movement. I imagined seeing the admiration and sheer love one sees in their old dog’s face, but also sadness and meekness. We humans may be messing up what she knew best.

The adults, a generation ahead of us, knew this. Their love for a dear family dog, too, conflicted them, I imagine in retrospect. Their desire to console and protect the children, to postpone the inevitable, to avoid the kids’ sense of a dog left alone in the woods to die, as a tragedy in young minds, under their roof, brought our dear Queenie home regardless of the natural instincts some animals have. It was that evening or during this spell of time that I learned, or was told by various adults, that family dogs who are very close to their owners want to go off and away from the family to spare them the hard partings. In so many words, it was also conveyed that some animals have an instinct to seclude themselves and go off alone when the time comes to die. It seemed Queenie knew what she was doing. She just could not tell us, but if she could, maybe we would not believe her anyway. Maybe we would still insist she come back and do it our way.

Some of you may know this and experienced it. It may sound far fetched to some but common knowledge to others. Just so that you do not assume this is old time, countrified folky babble, I have researched it as surely Queenie and a few old time dogs’ ancient realities, were not so rare. Certainly, many dogs will cuddle up and seek comfort from Human- their best friend. For those that do not, they have a reason, too. Part of their ancestor, the Wolf’s instincts, not to make the pack more vulnerable with a weak, sick, or dying member, and or themselves easy prey, and as stated, to spare others, or simply an instinct more common to some breeds than others. Even going off to another room in an apartment or house or huddling closely within their body or little corner, can be common. Today, many dogs are so domesticated without opportunity to run free or live more outside than in, has weakened, that drive or pull.

Queenie died at home a week later. In her feeble efforts to stand one day, she fell off the front porch and died. She was buried under the big bill berry tree which then was on the far side of the driveway. The tree is no longer there but for some time it was a fun, shady and special place well suited for her. Two more dogs who later came into our family, Miss Biz and Trooper, the latter my brother Neal’s dog after I left home, are buried in the front garden.

Something like ” The Queenie Effect” or Instinct has hit me from time to time. Perhaps in little ” au natural ways” there is an instinctual bleep in most of us. When faced with a terminal diagnosis or potentially fatal outcome suddenly, many drives, thoughts, desires crash in and may not make sense otherwise to yourself, initially, nor others who care for and love you. To some of my children, to my sisters, to Bruce, I have said, I just want to go to Iceland, in a little lodge by the bitterly cold sea, alone. (Bruce would have to come, poor soul. My care needs would be ongoing but I could not imagine him so far away unable to get to me or me him for months. Besides, it was only a fantasy anyway.) It was the imaginations way to exit me out of this harsher, unwelcomed piece of reality and place me far away in another, so far, yet so devastatingly stunning in natural beauty, location. I would not have to be in my family’s vision, or friends or loved ones’ view, be that ” burden”, as the awful declines of ALS would be out of sight, of Luke, Grace, Saxon and Jesse, but perhaps not out of mind. Too much of that protective oversight on my part, may be simply selfish, or perceived to be.

It is simply the escape – the running away; changing the scene with the hope of altering, somehow, the circumstances knocking at the door of your heart, head and soul. Maybe a human equivalent of” The Queenie Instinct”. As children, many of us were told ” to be seen but not heard”. Lately, I am fine with being heard through some writings or posts. That feels a tad safer. My ability to speak is now gone. A form of seclusion, if unable to run away, or alter the scene, try as one may, feels temporarily, more humane, more comfortable, possibly protective than “being seen” like this, some days. There are dangers inherent in this way of thinking, too, but it surely is a part, a detour, a pit stop on a cow path of coping on the bigger journey.

An acquaintance of mine when told of her cancer diagnosis and subsequent surgery, could not stand to hear a nurse, doctor, medical personnel call her by her name. If going for blood tests associated with her condition and her name was publically called, she would grimace and tighten her lip, roll her eyes and reluctantly rise and go. My thinking was it was simply a protection of her privacy but it went beyond those circumstances. She kept as secluded as she could but did in frustration and confidence say that this is not me. This is happening to some one else – not me- not my name. If only I could change my name for a year and return to me when it’s all over. She recovered, her name intact.

Lastly on “The Queenie Instinct”, deep in my memory bank but floating often to the surface, are the threads and patchwork quilts of my first husband’s walk on his journey of terminal illness with the cancer of Multiple Myeloma. That was the final bulky chapter written somehow for us, by us, or with us. I have shared little on that in my Blog, and am not sure just how much may be shared, as well as sensitivity, or my ability to do any of it justice it deserves. . Here is a simple example of his moment of identity crisis, in crisis.

On a Sunday afternoon in the old Camp Hill Hospital, after Donnie (DJ) was there for two weeks undergoing tests on back, spine, all sorts, due to an error of some pertinent but alarming medical info left on his night stand that we were not supposed to see “there and then”, we agreed that I inquire at the nurses’ station, what this info truly meant for us. This set in motion a flurry of blushes, uncertain looks, and awkward responses, resulting in the Head Residence Doctor being called to meet with us. He explained that the plan was to tell us early in new week but because of new circumstances, he told us then the diagnosis and prognosis. It was bleak. Much occurred internally in the next 24 hrs, tears, dread, prayers, laments, hope but that aside for now, eventually, I had to return home by cab to relieve the baby sitter for Grace not quite two yrs and Luke , just turned eight.

The next day, I got off work a couple hours early to make my way back to that hospital room where I found him just being transported back from the VG Hospital. Donnie had a beard -goatee- from the moment I met him and long before. He never shaved it off. He kept meticulous care of it, trimming, washing, fine tuning it daily. It was part of his look, his trademark, his style. He was propped up in the hospital bed with a look caught between fright and excitement with his face cleanly, thoroughly shaven; not a lick of facial hair – no moustache, no sideburns, no goatee. He could not explain why right then. He didn’t have to. A nurse came in while I was adjusting my view, and said “Yeah, what do you think ? I told him you would be surprised but you’d get used to it because he was determined it had to go ! ” I fell silent. Later, he told me he had to get it off and that he couldn’t have it anymore.

In later days further on in a remission and more illness, he let it grow back but for a time, it was not him, the real him, he felt, who got harnessed with that grueling prognosis.

It gives some of us a ray of hope, understanding and connection when we know that Jesus Himself in The Garden of Gethsemane, while in the deepest of prayers, sweating drops of blood, while even his most reliable disciples could “not wait with him awhile”, could not stay awake, could ask The Father if it possibly be His Will, could that Cup awaiting Him, be removed; but nevertheless, He said, not My will but Thine be done….( warning to those who may be uncomfortable when the lower case “s” for spiritual turns to the Upper Case ” S” for Spiritual, or for some who may feel this is too religious in content.) That is fine, respectfully, but for me, it is part of what I hope to share on my path in this Easter Time Reflection.

There is so much to say, to learn, to delve into with much practical and spiritual lessons, or enrichment from the Gospels on The Passion of Christ. By no means would I begin to make a comparison to our dying experiences as Regular Joes to Christ’s path, mission or Divine Work, but it is there for our reflection. – He is there in plain view, in the Bible lessons for an example or for our example, if we so choose. Although, I may create a gulf or a far fetched, inadequate case for a distance between us, He does not, in the mercy, grace, sacrifice He wants to provide in our weakest hour, our trembling, our identity crisis, even our humiliation, intense pain, suspicion, false statements, mocking and incredible suffering in front of His mother Mary who knew Him on earth like no other, loved Him like no other, along with other faithful, brave female friends, and some disciples. In the tortures of crucifixion, Christ looked down from the cross, to look out for His mother, to secure a place for the remainder of her earthly life, with John. ” When Jesus therefore saw his mother, and the disciple standing by, whom he loved, he said to his mother, Woman , behold your son.” Mary, to our minds, never turned away, unless we might picture covering her eyes maybe at a more horrifying act of torment, but she did not run for her own safety. She continued to believed in and for Him through the mists, I would imagine, of many mother-hearten mixed emotions and grief. In the radically different scene a week before which we came to call Palm Sunday, through the fickleness of crowd mentality, from hero to zero in a week, in many folks minds, from being lauded to mocked and killed, she knew who he was and stayed the course while his outward identity altered rapidly.

Christ’s resurrection was not publically viewed. Hundreds of spectators were not lined up awaiting a miracle, outside the tomb, despite some hearing Him foretell what would come to pass and witnessing three years of miracles, and unique, to them at time, teachings – a different world view. Doubt, grief, danger, confusion easily can set in with many of us, despite what we think we know. The rubber hasn’t hit the road really hard yet. Some disciples were huddled in fear or anxiety. Certainly it was first witnessed by women, Mary Magdalene being one who ran and told Peter. Regular women with intense life experiences who followed Him, were his “sisters on this journey”, so to speak , were first to see, to believe something deeper, more comforting was at hand, despite the fresh memory of ugliness, shame and cursedness, seemingly of Golgotha.

I am not a preacher or Bible Scholar, so I will leave my ramblings here. We know much more occurred of great interest and study during the period Christians refer to as Easter Week – specifically Good Friday to Easter Sunday. I get excited and love the stories that occur between the Resurrection and the Ascension, especially. Jesus appeared to His disciples and others, often with a hint of surprise, usually comfort- despite the fact those who had known Him the best, often thought he was a ghost for a bit. He exuded a different, calm, assured vibe, with great warmth. This spelled out yet again, a difference in the outward identity. Inwardly, the various facets of his nature, always there, but perhaps, not always seen, understood or embraced, shone through. There is something about Christ’s incredible lightness of being now, in these appearances, often greeting with or offering “Peace” each time.

In these examples, my favourite is Jesus cooking breakfast on the beach for his disciples who were out toiling again for fish, catching nothing. For those who may not know, this can be found in the Gospel of John, Chapter 21. It is a beautiful read as well as the famous instructions to “feed my sheep” and “feed my lambs” that Jesus needed to impart prior to His Ascension to key disciples, full of flaws, questions and human nature as I am today.

Jesus_01Jesus, having suffered a horrendous death, humiliated, beaten publically, nowhere to hide, if He opted for that, taking on the burden and questions of our sins or misdeeds, man’s inhumanity to man, fulfilling in obedience for a gift we often can barely comprehend or care to recognize, at times, trying to give us a deeper peace or purpose, a relief from our burdens, a strength to carry us through, rose from the dead to little fanfare. Still happily, lovingly, He surprises disciples who tentatively recognize him and are back toiling and stressing over their daily/nightly workload, to no avail, builds a fire, calmly cooks them breakfast. (This is pretty cool to an aging Flower Child who spent a lot of time on the beach, bonfires, deep chats, watching the tide). He gives them a miraculous catch in their nets, on top of it all, after all their night of trying, or struggling, of sweating it out.

Rather than my Iceland escape, I can, if I allow it, envision a strong Jesus, who endured suffering in heavier doses than I can imagine, for much nobler reasons, who, now fresh, finished that task(s), His incredible lightness of being, so apparent, altered in outward identity, but known, recognized – making a little fire, cooking breakfast for me, on the shores of The Kennebecasis, or some beautiful shore, saying little, because now, much is known, smiling , says “Come. Peace! This is for you, Susan.”

Some liberties were taken in my description of a possible end of this earthly existence. I do not know what it will be like, exactly! This picture is one that comforts me. It may be that lovely, or so much more. Such a visual helps to sustain through physical; and internal changes as they hit or sweep over us, over me, shattering outward identity., offering a core of an eternal identity , in return, which becomes stronger bit by bit. It is my belief to grasp onto because of a suffering Christ, a resurrected Christ and an overcoming, merciful, acquainted with grief Christ.

Water_01Admirable words, lofty, hopeful, maybe too much so, because I know the fragile hours, the depression, frustration or despair that wells up. It can temporarily wipe my best attempts, or these reflective hours of peace and assurance off the board as a wind storm tosses what was stable aside. I can be shaken to the core, but the reminders of the peace or hope, ” sunnier days” have the gentler force to pull me back in. So still, I will hold on to that longer, rather than the sense of punishment, doom and shame frequently trying to block my, possibly others’, vision.

Wishing you a gentle spring with hope. For those who celebrate Easter, Happy Easter !

Thank you,

Susan JM

Joy Unreachable or Full of Glory – Part II

Please know, my experimentation with joy during a deep valley experience is not restricted to these few sharings or physical, material items. Joy can just as easily come from standing out on my side porch in a snow storm, as I did last night, letting the windy snow drops lightly sting my face for 5 minutes and breathing in the sharp, fresh night air. It is then that I feel New Brunswick and my grandparents and uncle’s farm, Hill Hurst, over looking our Kennebecasis River. I can imagine walking home from the brook with my sisters just before the sunset, early, past the cow barn, down towards the horse barn where only a work horse, Sandy, remained, sloping towards our grandmother’s old house, past the apple orchards silvery topped with white frost, silently, as siblings can because there is nothing needed to be said then that they do not already know, to our home, to our supper. Or we could be dragging our sleds down from Ryders Hill, biting our snow encased mittens, trying to sound cool for the few boys, our cousins, our neighbours, more like brothers, on our fearless, careless, carefree, future-full life, with no thought of cold, in the biting snow now rising up in the air to greet us. That is joy, too.

  • On Christmas Day, my grandson Luke Jr., arrived a bit early with his girlfriend, Kristen, driving up Luke Jr. & Kristen, Christmas 2015from Antigonish, where they had spent a couple days with her family. Luke Jr. I noted a different look on his face, one of anticipation. Luke Jr., is in his second year of NSCC in the Welding and Sheet Metal Fabrication Program. Just reeling from an odd flu bug, feeling even weaker than “new norm”, with my current inability to enjoy a Christmas Dinner as once I could, and having pared down Christmas this year, I felt badly for any of my kids or grandkids who may have felt compelled to spend a portion of their Christmas Day with us. However, here was Luke Jr, happy and positive. He asked if I would like to open his gift to me. Again, I “felt” awkward because I do not expect ever, my grandchildren to get or buy me anything (smiling a grimace of annoyance towards myself here!). I took the gift and opened it. Inside the gift bag was a beautiful, personally, hand created long stem LukeJrRose_01steel rose, welded, molded into it’s silver beauty. I surprised myself with the tears and “heavings” that followed. He and the rose targeted a place in my memory bank and my heart that was veiled for some time. His gift was similar to his grandfather’s gift of creating beautiful tin, copper or pewter things in his spare time in his last 10 yrs of life. Luke Jr never met his Grandfather Jefferies as he died when his dad, my son Luke, was ten yrs old, but here was a perfect sample of a gift passed down genetically or spirit to spirit decades later. Beyond all of that, was a young man taking a chance to create, on his own, to think of another and calmly using his talent, just to give to his grandmother. Tears, but “unexpected happiness”.

  • Lighthouses created by grandson William and grand daughter, Jewel. Neither William&JewelLighthouse_01grandchild knew what the other was doing- one in Ottawa and the other in Edmonton. One, Saxon’s son aged 4 then and the other, Grace’s daughter then aged 5. Along with those home loving treasures have come an amazing, WilliamsBigHug_01WilliamsBigHug_02IssyJewelBench_01Big Hug William card, and a painted bench, both offering much joy, the latter from Ava, Issy and Jewel. They all have created special art work, as have some of my kids when little through the GrandchildrensPics_01years, to my little great grandson, KylaCowJalenCowIssyNSWilliamsButton_01Jalen and his Cow picture to me. I love cows. It is situated close to his mom, Kyla, grand daughter’s painting of a horse created a good 12 or 15 yrs prior. You will notice a picture or 2 of many of these as well. All happy distractions of Joy.

  • My grandson, Terrance_01Terrance’s faithful observation yard work or snow piling up or the need to shovel and clear walkways for me and grampy. he is a hard working and kind young man. This brings joy, gladness, and relief in the day to day.

  • Kyla&Alya_01The happy offer to trim our little Christmas Tree this year from grand daughters Alya and Ky. What a nice, simple evening. ALS has limited the use of my hands to work in unison with many fine motor skill actions, but in my presence, Kyla and Alya, with Christmas music gave a gift of joy and fun.

  • After Christmas, son Jesse returned to spend another week with his dad and me. Jesse&Landen_01During that time, a mini miracle occurred with Jesse’s little son, Landen, now living in Alberta, able to come home to NS, Eastern Passage, specifically for a 2 week visit ! This was lovingly arranged by his mom, Trina, for the benefit of both sets of grandparents, many extended relatives, for Landen himself who misses his fam here, and for Jesse, Landen’s dad. At first it looked as if Jesse had to return to Gagetown at the appointed time, due to a specific ,scheduled task for which he was slated, and therefore would only have a portion of a day with him. This was bleak, after a moment of Joy. He tried to get an extension with his superiors but to no avail. We got serious, fed up, and made it a matter of prayer as it had almost been a year, despite Facetime and phone calls , that they had been in each others’ company. It was an ache never leaving in Me&Landen_01Jesse’s heart, I know. Suffice to say, after a wait, Jes was granted three more days. It was joy unspeakable. ” It may not come when you want it but it will come right on time.” We had some special added times as grandparents alone later in the visit. There are a couple photos of both occasions.

  • Time this Holiday Season included more “unexpected happiness” with the arrival one day of two more grandchildren, Lyrique_01Lorenzo and Lyrique. When we get together, we usually plan a movie at home, baking, a craft or an exploring walk by the water. This time, again, half of this I could not set up. Boring grand mother, again, I feared. Soon, I said to myself, my kids and grand kids will feel forced to spend an obligatory visit to a nanny, a shadow of her former, semi fun self. However, with their dad, they assisted in making a tasty meal that once blended, I could swallow. We quietly sat down and peacefully painted little LyriqueHouse_01LorenzoHouse_01House Banks together, and the accepted solitude with painting gave us smiles, nods and peaceful moments together. There are a few photos of those moments of simple joy.

  • This past week, my grand daughter, Isabella, visited with her mom, my daughter, Grace from afar! Much of joy could be written here, but to focus on grandchildren, Isabella brought paintings and cards from her Ava&JewelNSMemories_01sisters Ava and Jewel. Isabella ‘s first full day was full of special tasks and jobs she did that specifically accomplished to assist with grampy and my “situation”. IssyBinder_01Over the week, she created a binder of words and phrases that I can point to, as my speech limitations have increased. She compiled literally a thousand plus old photos into coordinated albums. She walked with me all the way around the boardwalk, a jaunt I no longer could fully manage since mid December, and constantly aided her mom, grampy and me. For our light entertainment, she happily watched some fun or silly shows that help with little needed distractions such as my Coronation St., The Real Housewives of Atlanta, certain portions, ( confession time – that one and RHW of New York are my ” favs ” now that I have had time to discover or do light, very light entertainment, every once in a blue moon), or The View.

  • Issy_01Issy read more serious books to me of the Devotional nature, and showed her acceptance quietly to me, as I am. She researched Bulbar Onset ALS, as have most of my family now and purposefully comes from a level of awareness that creates some ease for me. A picture or two of these efforts, resulting in joy, will be posted.

  • Lastly, and with more difficulty, is the summary of an act of love, sacrifice and joy from my youngest brother, Mike. How to do this, is the question. Mike is far from a grand child and it is a slice of the grandkids that part I of this blog is centred but with Joy as the over riding theme, this lengthy Reflection is the appropriate place for this acknowledgement. Mike is the youngest of five children in my family of origin. When our mom died a month after her cancer diagnosis, both my younger brothers were in their 20’s. As the youngest of the three girls, I was situated to be quite close to Nealon and Michael, and spent large portions of my late elementary years up to high school taking care of the, babysitting, making up imaginative games and stories, forcing them into my projects about Glooscap, Lois Reil, or The Coureurs de Bois, or seeing if I dressed them up in my old fancy Sunday School dresses, crinolines and all and sent them out of the lawn to play, how long would they see the fun in that? Not very nice, I know. They gave me a run for my money too. We were stuck together a lot but that was the natural lay of the land.

Our father was a WWII Vet, as many fathers were in the 1950’s and ’60’s baby boom generation. After dad married our mom, who was only 17 yrs, a graduate from high school that year ( not uncommon for war brides back then), dad ended up overseas for literally four years. It was not until the war was over and dad returned home, did our parents start a family. Sharon Anne arrived first. Three years later came Jane Irene. Three years after that came a third girl, Susan Helen. An absence of eight years before another baby arrived, The Crown Prince, Nealon Conrad, ( just teasing but Neal was the first Wyman male in decades, and we all were happy.), and three years after that, when I as eleven years old, along came The Spare, second son, Michael Christian. He was a joy to behold. Mom, at 41, retired from the baby business.

Dad_01Our father, Kenneth Conrad Wyman was striking to us. He held a place of respect, fear, at times, humour, discipline, determination, compunction, with compassion, with some inner angst, high, exceedingly high standards, joy of the beauty of the countryside, dedicated church worker, Deacon, Member of the School Board, Post Master, Post Office Superintendent, loving father, steadfast husband, Work Alcoholic, perhaps, but he never wanted to speak about his service during the War. As some of our uncles marched in Remembrance Day parades, or joined The Legion, dad would not. As a little girl, with my mom’s help I practiced a few songs to sing to him upon his return from work. My homage fell flat, despite the fact thy ended up being WWI songs my grandmother sang, and not WWII. My father firmly told me to stop and to never sing those songs again. Obviously, the memories held no cherished reminders.

We knew our father was shot during the war in the back, but it was by far not a debilitating wound. A skin graft was there that we could see when he was shaving. We learned later one day he was shaving outside his jeep or truck when he was shot at another time by German fire. He escaped without a hit but his buddy next to him within a few feet was shot dead. His brother in law, his sister, our Aunt Hattie’s husband, another young man in his 20’s was killed just a couple days after he and dad met up in France on a mini break. Dad let it slip how too often he would see the dead piled up like cord wood whenever something on the radio or TV came on to glorify war- or the American Movies gave a lop sided view of how the war was won and their heroism cult grew. He was attached to a medical unit on the front, doing reccee , scout work, to set up camp for the unit, to fight the enemy found. In his bottom drawer in his dresser was a German Revolver and on our fireplace, a hearth he made himself, was the German Officer, Fancy dressed dagger. Little was said on that, ever but we knew our father killed others in the war but it was best to say nothing. Dad took no joy in war. He did his best to banish the memories from his skull and not to welcome them. From my aging perspective of a mom with a son injured in war and two more serving in the Armed Forces, our father fought heavily with this significant part of his psyche and war time experience. The inner demons, so called, surfaced, but he fought hard against them in order to live the new chapter of Post War Canada and raise forward looking children, untroubled with that pain or impact of war.

I say all this, to simply say, I took a keen, intuitive and outward interest in my dad and this part of his young history. He knew it. In later years, as I suffered loss, he began to share bits and pieces with me, and some to others quietly, of those years. I kept them as treasures from him in my heart, knowing they did not come easy. During the last 10 years of dad’s life, he began to go to Remembrance Day Services in his church. Several times, I was honoured to attend with him. Tears were visible in his eyes, as they now are to me. At one time, dad gave me his medals. I took great care of them taking them to every Remembrance Day Ceremony.

Dad_02One day, he asked for them back. I complied but felt stung and hurt. He did not handle that part as sensitively as perhaps he ” should”. I began to focus on old wounds between he and I, for a short bit, but I loved him too much to “go on and on” or damage the love and respect, ultimately I had for my dad. He was a good, albeit, sometimes a hard dad, yet have mercy and generosity aplenty. Besides, these were my father’s medals. Our relationship and his commitment towards me and my children did not suffer. We just kept growing closer through the good, bad or ugly of life. Happily, dad confided and shared with me a lot over the phone and in person. If advice was warranted, he’d give it.

In any case, for whatever reason, he was fully entitled to them. Something on his inner map of life, I now surely can see, made him ready to accept his 20 to 25 yr old Ken Wyman and join the few remaining WWII vets who were willing to sacrifice the ultimate sacrifice, and even with mixed feelings, honour his buddies, the unknown soldiers, the households who never had their brother, son or husband return home and to stand for that. maybe it is just one of the ways we come home to ourselves.

Dad would joke with us as kids and adults, that when he died to just roll him up in his old army blanket, dig a hole and put him in. He was always digging holes, landscaping, adding on, discarding the old, repairing the broken things or making something new and modern. We can remember that khaki army blanket dry cleaned, in it’s plastic wrap, in his closet, during the last few years of his life, after going with us to the beach, on camping trips, or covering us if we fell asleep in the back seat of the car. When he died, we did not dig a hole but we did bury him with his old army blanket folded up, and laid on his chest.

Prior to my son, Saxon being deployed to Afghanistan, my father died at age 87 years, in February. Knowing Saxon was enlisting about 18 months before dad died, gave him serious concern, as it did me. Parents are caught between supporting their young adults with such challenges, often counter-intuitive for a protecting parent. We try to communicate our concerns, without alienating them. or loading them down with our apprehensions and worries. It is both frightening intermingled with hope, against hope, with pride in their discipline and youthful courage. Me&Dad_01Dad shared his hesitancies with me, yet he wisely shared that there was nothing he or I could do to dissuade him, but to be supportive, realistic and to pray. Psalm 91, which my father had memorized for years, and one of my favourites, became our families’ anchor. It is commonly called The Soldier’s Psalm.

Now, all three of my sons are in the military and do face many challenges, and due to their areas of expertise, they face dangers unknown to most. My son in law serves so often alone daily as an RCMP Officer and my daughter within Civilian Management in DND. We never set out to be so, but something beyond me, flowed that way. Dad has given us a guidepost with the highlighting of Psalm 91 and daily prayer. He provided a realistic view of war without the bravado but with pain of combat, of uncertain emotions after, yet doing all you can at the time. He also, finally demonstrated the importance of accepting your service humbly, with honour after a, for others never able to live out their lives, as well as the importance of survival in or out of military duty.

This section started out to be about joy and my brother, Michael. Well, I said all this to say that. As our mom often said when I was nervous or faced something challenging or something I did not want to do, ” Be a brave little soldier, Susie”, for better or for worse, she said it. I accepted it. Today, I face a battlefield, a ” front” of a different kind unknown to me. I prefer not to go to this theatre of war. I prefer not to be taken prisoner by the enemy. I prefer peace- a peaceful homeland – without an enemy at the gate. Michael knows that.

DadUniform_01A week before my birthday, Mike, my eldest sister, Sharon and Mike’s partner, Ann visited again. They had something special gently wrapped up, recently prepared, ready for a new battle, adorned with medals for me. It was our father’s Army Jacket from WWII, with each medal properly affixed, sparkling. He unveiled it and brought it to me with love and joy. I held it and cried and cried. It symbolized so much. It stood for strength, life, battle, perseverance, courage even with great uncertainty, all of which I need and must have now. More so, it brought my father’s words, his life, my strong memories back to me and my sense of missing him, particularly at this time in my life. Michael, and his family dug deep into their wealth of love, private moments of his own reflections on this matter and me. With lessons, and directions from the heart meeting with my tears and sadness, he brought joy. The note inside said this was for my comfort now and when I no longer needed that comfort, would take it back as then, he would need comfort.

Thus ends my very long blog post on the story of joy. Thank you for taking the time. Thank you for your patience. It will be a week or more before I lay more wordiness on you. That is a certainty, but I trust you’ll check Low Tide Reflections out again in the future.

Sincerely,

Susan

Joy Unreachable or Full of Glory – Part I

Dear Reader, This Blog Post is a two-part Reflection. I warn you, it is lengthy, perhaps more like a form of short story without formal format. Patience may be required but I hope over the days, you will give it a shot still. It is a busy world we live in, and little time for pondering other people’s woes or lessons, I know. I type with one finger now so if inspiration hits, it is difficult to stop in case tomorrow that finger and my right hand resists. Succinctness has escaped me in life, and although it is a discipline lacking, I may be forced to develop it.

There is a lovely woman in the ALS Support Group held once a month, that Bruce and I try to attend, if other appointments do not over rule. For the sake of this post, we will refer to her as “J”. If it wasn’t for J, to date, I would not have met another female with Bulbar Onset ALS in person. (I have had the benefit to meet a fair amount of women and men with Bulbar or Limb Onset ALS on line, including On Line Support Groups). The on-site Support Group that we drive to, is offered through The ALS Society of New Brunswick and Nova Scotia. It is located North Dartmouth on Wyse Rd.

“J” has very similar losses, to mine, impacting respiratory, speech, sustenance-getting (meaning we both suffer with dysarthria and dysphasia) creating significant issues with eating abilities, verbal communication, and hand weakness, to name a few. We both experience the daily machines of Cough Assist and Bi Pap, as well as other machines or resources to benefit us daily. We both have read some of the same books about the ALS experience and both are heavily into our families who also are trying to navigate their boats in their own ways, in light of the diagnosis.

When I met her, my diagnosis was less than a month old and hers was approximately 18 to 20 months. As a professional woman, she also encountered radical changes to employment, family, former roles, communication, independence, and stamina. It is an understatement to say, her experience and her times of opening up, even a bit to me, have been a Godsend; a guidepost. Despite the fact of similar current experiences, there are of course differences in our medical histories, our desires, our goals, our physiology and how this condition is effecting our bodies and minds now.

The first and only word of initial advice “J” gave me was to “try to find joy in every day”, or she also said it this way, “each day, try to find one little thing that brings you joy”. She spoke it with her failing voice, similar to my own now, but she also wrote it out. I have heard so many pat phrases in my time, in times of grief, duress and exhaustion, that I got into a habit of just letting most of them go in one ear and out the other, but to still respect the intentions and thoughtfulness of the person sharing. Every now and then, depending on the sharer and their experience or ability to reflect, in my arrogant judgment, perhaps, I allowed it to stick and not just snobbishly toss the words away. For me, in September, as angry and ashamed as I was for being so hostile, terribly sad, and yes -enraged- in my head and heart, my tolerance level was low. My spirit, heart and head seemed to be in a sword wielding battle between the hosts of heaven and the pit of hell. These efforts to bolster myself up, hourly, to practice faith and claim some hope, with a window to a possible future, knotted into an anger I could not successfully camouflage. As expectations of myself, within the first few months, swelled to living my principles or my anchors of faith regardless, making friends with the idea of death becoming a bona fide reality before my brain imagined, (at least prior to the end of August), to somehow contently leaving all I know and love before I wanted. was a draining task. After all, we all know, don’t we, that we are going to die and I am supposed to be a spiritual person – a Christian!!?? The list of my own dear family members and loved ones already departed was not a short list. So, how childish can I be??

The efforts to mentally remain a sane, grounded mother figure to my kids by manifesting some semblance of stability and even hope to them, in the wake of despairing news, to communicate appreciation and empathy to my siblings and friends, to motivate and emotionally support my husband, as his life was radically changing, along with all the things I thought I “should” do, were failures, or so I believed. Looking back, it was too much to expect along with a hundred other “things”, demands, needs of each day. That is when we are suppose to “let go and let God “. I was failing at that, too, or so it seemed. So anger was there. Anger towards God, for the first time in my life, despite other past losses, grief or hurts welled up. Anger towards God was new to me and the fear of fostering it -aiding and abetting it- made me feel very ill, sickened, adrift and ashamed. But there it was and I had to deal with it.

So, in regard to “J’s” advice that day, I heard it and smiled faintly, but put it on the shelf along with other ideals that felt, well just too much. I had always been a trooper- a soldier- or so I thought. Apparently, I wasn’t. It made me pleased for her that she could do that and had a peace obviously beyond my grasp, but maybe I best get there, and soon, were my thoughts.

“J” must have taken a good, intuitive, second look at me and then she spoke and wrote something more. She told me that the first three to four months were the most difficult for her. She said it was simply very hard. She said the nights were the worse for quite some time. She told me that she found it very taxing during those early months with so many changes and transitions. She said that often her mind was pulled in many directions and things were very painful for her emotionally as were the efforts to get enough water and nutrients into her system. Misery may love company, but no one familiar with ALS or a debilitating cancer, regardless of how stigmatized you may feel occasionally, wishes that plight on your worse enemy, and I took no joy in “J’s” pain or earlier adjustments either. Sometimes it is just that a hurting, confused, dried up soul needs some watering from an experienced gardener or a sojourner on the same road. “J” provided that. Due to that, I gained a frame of reference to go on in September and since then, she has offered some practical light on this path in a very human, woman to woman manner.

Then there was the idea she shared of finding some joy in each day. Didn’t I already know that and try to live it, generally speaking? Aren’t we “suppose” to do that ? Isn’t this part of the rudiments of a healthy life? Was I not (kind of) doing this before, anyway… most days? In my spirit quietly, or in my prayers, did I not show and express thankfulness, at least most of my life? Have I not practiced “the sacrifice of praise” and taught my children some of these principles to implement during times of trials and woe? Even since this diagnosis, my husband and I took in the glories of the seaside, the ocean changes, the birds in our maples, moments of cheer with one of the four kids or any of the twelve grandchildren? We did. We did spontaneously and other times, if weighted down more, we tried, at least. Obviously, that was not sufficient. In truth, it wasn’t and even when we were in good health and the sun or Harvest Moon was shining in the skies over our abode, and into our windows, I took too much for granted and the important ideals or life support for an emotionally and spiritually healthy life, were not being practiced. By far, not enough.

The consideration of finding and participating in the idea of joy as a daily practice, has become a new anchor. It is a new day and a new chapter, now. It takes a discipline of sorts and yet is a type of medicine for the soul. “J” was aware that this medicine is crucial and life giving. For best results, it must be taken daily. Although some days it is a missed med, it is slowly part of a regular, important concoction for the heart and brain! This is what “J” meant. Not being a “Polly Anna” naturally, or for many years, but more of a Rainy Day Person myself, (which before you judge too harshly, they are needed too in order to walk with assurance in the rain, with another, or support those and have empathy for others experiencing stormy weather), a reflection on joy reaps benefits. Thankfully, The Creator loves diversity in the children, in the universe, and as unique or even slightly different we are one from another, there is a place for us and much we “should” embrace about ourselves and how we are created, too for this piece of time we get to live and breathe on earth. Still a touch of joy, or an anticipation of joy, in “The Now” won’t detract the serious business that often awaits us. I wish I practiced it more often, earlier.

Too often, we put on hold that joy. It is nothing new to say that too often we wait for a better time or ideal circumstances to focus on joy or to catch joy. Another bane of our hurried paced existence. We can easily ignore the present hour we are in and I allowed myself to be a participant more in the worries, in procrastination of enjoyment, of relaxation, of simple joys. There is no ideal time. We may borrow trouble but we rarely access the capital of joy in the here and now, naturally.

It may be in the sideways glance of your son as you drive him to school and note his anticipation of his day to come, or hold your nieces’ hand as you take her to the fair. It may be when they are up to bat for the first time, or getting their first goal on the ice. It may be the moment your partner says,” look out the window. The sunset is like something I never saw before”. It may be your daughter saying that she wrote a speech today, mom, and it is about inequalities in the judicial system. It may be a child singing quietly under their breath while doing their homework, or trying a new riff on the drums, or a difficult manoeuvre on their skateboard. It may be that certainty and relief that your prayers and your heart’s cry before the Lord, has been heard and your inner thoughts or desires known and understood. Or it may be seeing your rose bush planted and tended for years finally blossom, or a field of horses switching their tails in the summer heat with several lying down under the shades of the trees, surely oblivious to the woes of the human pace, that day. It might be receiving the news that your dad’s operation was successful, or your ill mother smiled at you and enjoyed the cup of tea you made for her. It may be more or it may be much less. It is not happiness, only. It is not “trying to be happy” or practising gratitude only. It is more. It is a moment of inner rejoicing, a lilt to the day that you relish or you let sit in your gut or your spirit. It is a joy that can lift your heart and gladden the soul.

“J’s” definition of Joy now, after integrating joy seriously into her life daily since her 20’s, is simply “unexpected happiness”, and to clearly be on the look out for it and to not dismiss it. Before I share, some recent conduits of joy for me in the last few months, focusing this time, not on the many kindnesses of friends, my adult children or older family members, but rather solely on those gifts of joy from some of my grandkids, and my youngest sibling, Michael, please bear with me as the following facts are shared:

The Merriam Webster Dictionary describes Joy as “A feeling of great happiness. A source or cause of great happiness. Something or someone who gives Joy to someone. Success in doing, finding or getting something. The emotion evoked by well being, success or good fortune, or by the prospect of possessing what one desires. The expression or exhibition of such emotion. A state of happiness or felicity. A source or cause of delight.”

Synonyms of Joy are: “crow ( I love that one), delight, exuberate, gladden, glory, jubilate, kveil, rejoice.”

In dwelling on joy and beginning to consider it as a ritual despite how “untoward” the remainder of my day may ruffle itself out, I am beginning to wonder if Joy has become outdated and old fashioned. Is it an archaic word now, or notion? Is it frivolous, or only for the ill who must be in denial, or just considered silly and useless? Is it thought to be only for the simple or silly billies? Is it a waste of important time in a serious world? Is it something people reach for medication, an abundance of mind altering activities or substances to achieve?

Might be interesting to know that the word “Joy” in the Bible (King James Version) is used 102 times in The Old Testament and 63 times in The New Testament! Compare this to the word “Wisdom” used 181 times in the Old and 53 in the New. Lastly, it is interesting to know that the word “Hate” is used 71 times in the Old Testament as compared to Joy’s 102 times in the Old Testemant and “Hate” is used 16 times in the New Testament whereas “Joy” is used a whopping 63 times in the New! (Again these stats are from KJV only) Maybe we do too often “see through a glass darkly”. Maybe we (I) became hard wired to sit with the woes, with limits on happiness or the joys, and dwell too often on the problems, sorrows, and negativity of this life rather than more unabashedly open myself up to joy without the guilt that we too often have been conditioned as a companion. I certainly have had joys, but too often I did not look for them. How do we come to terms with the sad thought that we are undeserving of too much joy, and keep ourselves on a diet where joy is severely restricted? Too often, after joy, I braced myself for the next storm, just in case….

Let’s not permit the word or essence of joy to become as faded or out of practice as other solid words rarely practiced nowadays. Words such as gladden, remorse, eventide, penitence, comeuppance, fiddle-faddle, stalwart, compunction, pensive. Joy may come with tears or with smiles. It is present with us, or may require some re-jigging in our time and daily routines, but like love it is “as perennial as the grass” and as varied as the flowers; as the human race.

Sorrow will come. Count on that. Loss and change never retreat from the human experience either. Joy is in greater supply. It can be felt and embraced daily, after all. Best to practice it now and to really dwell on the full scope of what is really meant with the scripture that says, and is so frequently quoted “The Joy of the Lord is my Strength”. I might be skimming the surface on that one too, of late. Oh how we love to quote a scripture or repeat a platitude to others without some depth of thought or living it ourselves. Words cannot always cover a multitude of faults, or pain, fright, or disengagement. But hey, they are a good first step, and a more enduring comfort if along with acceptance of loss, is the embracing of an ancient treasure -Joy- in due time. Don’t keep the door shut on it for too long, though.

Signing off but giving Joy, even in small doses, a run for its’ money. For those serious folks or those going through dark tunnel after tunnel, there will be a season to catch some natural joy, rainy nights or glaringly sunny days, when even the sun rays feel too intense, and inappropriate.

Susan JM
February, 2016

Sharing A Few of the Cards That Were Dealt

Let’s get the seemingly negative, the initial blaring, lousy news out of the way. I told myself I would not just be a sad sack, a pity seeker, “attention at all costs” complainer, but there are moments ! Sometimes, there are two modes, at minimum. One is shut up and say little to nothing about your woes, Susan, on the harsh transitions on your journey of ALS. The second is to tell it like it is. Be honest, frank and real. How else will others really know or comprehend ? How can people take an interest in this disease and it’s eradication, or a cure, or better supports if most say little to nothing ? The interest and motivation to say little to nothing is strong. Even as a person who communicates, I have difficulty rolling with, let alone rolling out the realities of this ” new normal”, believe it or not. There is a ” why bother” element. There is, ” who is really going to care”, or feast on the cruel news of this disease ? We often want to silver-lining it, or hear the ” yes, but”. No wonder, who really wants to listen to the nitty gritty ? Understandably few to none.

Then, there is the honest statement of fact in life on this planet that many go through worse horrors and terrible tragedies in their short life span. Realities such as torture, unfathomable grief, cancers, devastating illness, slavery, wartime crimes, wartime wounds of body and psyche, infant and childhood death, stillbirths, miscarriages, deprivation of children and loved ones, imprisonment, murder, and senseless deaths of family members, missing children and adults, daily chronic disease, and disabilities from birth. Some people have been called upon, it seems, to endure many hardships, or have had to bear a great deal in life from Concentration Camps, to daily bigotry, unjust, mistaken incarceration, Life Sentences of the wrongly accused, long term mental health difficulties impacting all phases of their lives, the long term impact of trauma. The list of hits to the human heart and body goes on and on. So, it feels almost vain- maybe it is vain – to ” go on” about ALS and me. After all, a big part of me resists ALS daily. I know it exists, but I shun it. Some days, shunning it is out of the question, but embracing it, is too much of a stretch. So, with my preface behind me, there are losses, incremental or landslide, depending on each new hurdle or lightening strike with this condition. This works differently for different folks diagnosed with Motor Neuron Disease (ALS). The type I have is Bulbar Onset and a quick Google will provide the basic losses and symptoms. Some of the changes and losses for me, thus far, are:

Slow loss of speech, to nearly non existent at times, now. This began on Boxing Day, 2014 after what seemed like an exhausting December, personally and professionally, but I was feeling quite worn down and flat for some time. Add the usual Christmas traditions and duties, budgeting, shopping, wrapping for family and work, decorating, baking, cooking, cleaning, conversing, ” trying” with a worn, over loaded- day to day life, or so it felt, one could easily reason that crawling into bed on Boxing Day while feeling a bit dizzy, exhausted, arthritic, for a 62 year old woman, could be a normal response and easily forgiven. A pounding, debilitating, crashing headache for over three days over-arched everything. When two of my four children, currently living away, phoned off and on to chat, said- “mom if I didn’t know better, I’d think you were drunk”. This intermittent speech slurring was minor at that time. It certainly did not last every day but popped up only at certain times, creating confusion to me and others- and would depart. Evenings and nights it became worse, occasionally. Eventually after a few months, the slurring became more frequent.

At this point, 11 months later, barely are two words intelligible. My voice is nasally, and I cannot squawk out a full sentence with any ease. The sound of my own voice is painful and to be honest, humiliating now. I cannot use the phone. I cannot place a verbal order at Tim Horton’s. I cannot express my needs or updates sensibly to my doctors or a sales clerk. When I have visitors, I try my best to make general sense, with careful breathing and focus, but it is a sad dying of natural communication, that is left for me. I am on the “other side’ of regular life, or life as I and 99 % of the communities, churches, and places or work, within my sphere, or where my social life and family exists. To me, as a communicator, that ship has sailed, baring a miracle or a medical cure. I am in a different land without the tools to make this new facet of life feel equal or worthy, often, or again, so it feels some days. To speak with what is left, is a decision between stamina and good respiratory later or an ill sounding conversation now. The muscles for posture and respiratory are the same. My face and body must compensate by overdrive and work overtime, to say a few words, to properly attend to a conversation from my end by use of eye muscles and other muscles that are not usually called upon to speak but now are when atrophy attacks the regular muscles accessed in speaking, chewing, swallowing and respiratory. So, yes, it takes a lot to speak, but I find myself still trying, still. For how long, I do not know. Difficultly speaking, articulating, expressing myself, being part of conversations, talking to my kids or grand kids, in person or by phone, Skype, Face Time, in any sensible manner, are losses. There is pain and sadness reflecting upon this. Sometimes, there is rage. Not being able to sing, or to de-stress via singing, a very common, private, daily natural uplift or decompression time for me, is a hard one to say farewell to but it seems I have. From singing as part of a congregation, having fun with my favourite music, to using the joy and distraction of song with my younger grandchildren, or new great grandchildren, as I did with my own children and older grandkids, with all the silly and serious songs I sang them, or would today, if I could, is a hard hit in my guts, emotions, and spirit.. It may seem minor to others. So, for many ALS Bulbar Onset, and other conditions, and later on in the ALS cycle for Limb Onset ALS, verbal communication IS a biggie and yes, a grieving process.

Hands. For me, my left hand is very weak with several dysfunctional fingers. One seems too high and another is bent for good, curled under, again barring a cure or miracle, or combination of both. Although we take for granted the use of our hands, as I took for granted, just how much we do with our two hands together, it is a reminder that they do so much in partnership. My right hand still functions but is weaker than it was even a few months ago. It is hanging in, thank God. This effects more of the finer motor skills involved with some activities of daily living such as putting some socks, shoes or boots on, trying up laces, opening envelopes, putting hair rollers in, opening doors, using most of the make up I used to with my hands, cutting vegetables, opening bottles, cans, effectively creating a meal to be offered to anyone, has hurdles equal to building a bonfire on a small cliff in a rain storm. Cutting my own food with a knife can be again very difficult to impossible. I can no longer type with both hands or even my right hand properly at times. Texting or iPad use utilizing one or two fingers on my right which are stronger than others, currently works.

Upper body weakness. Stretching my arms out to put on my own jacket, or a sweater is difficult to impossible some days. Doing much of the regular housework is problematic but some larger body chores such as getting a light load of laundry into the machine is ok, albeit too much is wearying on my rib cage and core,. but turning on the machine can be tricky. Shampooing my hair with arms above my head, is an example of extreme sport. Sometimes I can manage it with rest before and after, but often, I need to ask my husband for help. Never would I think I would be so reliant, and rue the day when I may be more dependent, but humility is a lesson taught over and over. Is that the lesson? I doubt it. Might be one. Lessons are for all participants in this I was told – or for those who offer themselves up or are in the family circle, to one degree or the other, but I may again be Student # 1, or the Object Lesson. Maybe dependence itself and how disconnected and individualized we have become, in our own heads, is something to reflect upon. Not sure. Possibly ” false pride” …something most of us baby boomers have heard lectures or reminders of the downfall of false pride from our parents, grandparents, from the pulpit or the classroom. We may guard against it, but it resides in most of us. Then there is the ego and the good, the bad, the ugly or the benefit of it when ” balanced ” – another fad word, often over-rated in the last decade, or so I thought, sometimes. Anyway, balance, false pride are swaying in the breeze, now.

Swallowing and chewing, is a concern and it is a vulnerability for me and most Bulbar Onset ALS, and eventually Limb Onset ALS. It is a fact that choking and asphyxiation is a risk. So far, I can still swallow softer foods but much is limited. Many things I hanker for, I cannot have. A smoothie, soups, some stews and eating a meal of softer, diced, mashed, blended foods can still be an ordeal, but I manage most days with these items, carefully. There is strict advice about not eating and talking. If you have a family gathering, or sit at a meal with friends, it has been advised to eat what you can before or after, and have something simple on your plate you can toy with if you feel awkward about just sitting there, but a word of explanation should suffice if needed. Then you can listen and for those who can talk, speak and share in the verbal fellowship, can be at ease to carry on. Errors in speech, chewing result in cut cheeks on the inside of the mouth which comes from trying to eat, or talk along with changes and muscle loss in jaw, throat, face and mouth area, in general with bulbar onset ALS. Dysarthria and Dysphasia are part of this brand of ALS.

For those like myself who cannot speak clearly anymore, or with out great effort, except for a few words, one can still nod, hear and smile, while sipping on something that will not cause choking and create another major issue. One can write something later if a hand still works, or use an “app” on an ipad or Smart Phone.

I prefer to eat what I can privately, or with my husband as long as he is enjoying his food and not having to monitor me constantly, for choking hazards. It can be messy but it is a mild treat to have any enjoyable food, so it is a treasure to still be able to taste and enjoy something. It is a private affair now, and relaxing while keeping wired to chew as best one can and swallow safely, is enough to focus on. So, it is happier for me to quietly do it, make my own mess and try to get some nutrients in. Something awaits and it is commonly called ” the peg tube”. It is a discreet feeding tube that is brought to my attention each medical appointment by caring and well meaning staff. It might be in my future. It is the only intrusive measure, so far, that I will even consider, if and when. It must be inserted in the stomach while one still has breathing capacity at a certain level, so that is a consideration for us. It is my hope and prayer that my throat and eating apparatus will stay intact for awhile yet. I pray the same for my legs. One can, if able, still eat with the discreet feeding tube, but the benefit, or premise of the peg tube is that PALS (Persons with ALS) will obtain enough nutrition which fosters stronger , perhaps longer life span. Personally, I remain unsure on this.

Respiratory and breathing are key changes for most ALS, especially Bulbar. This is too long of a story to share today. Suffice to say, we are still getting the correct Bi Pap machine sorted but that is thankfully in the works. In the interim, I have had the wrong or insufficient model and now a correct one that is used nightly with full face mask. I am slowly becoming accustomed to it. Many PALS use it during the day as breathing worsens. That is not my case, yet. I have the addition of an aerosol mask, Nebulizer Machine twice daily for the steroid and Ventolin, the latter as needed. Despite only smoking three to four yrs in my life, I have had several tough pneumonias, once a double pneumonia which was bad enough to be hospitalized for a week, with broken ribs and off work for three months to recover. Possibly, my lungs were exposed to toxins, or other in home, outside general hazards that have existed over the years in our environments creating added risks now with ALS, I do not know with certainty, but that is likely for most of us. I believe that second hand smoke, once prevalent in workplaces and later in homes of clients before the non smoking ban in various fields of work, is a factor.

Stability, “Fall Alerts” – although, my legs still function, I hate to admit they are a tad weaker. My gait is more wobbly now, so with winter, we must find a reasonable replacement for the slower, outside walking my husband and I were faithfully doing. There is much medical and Physio caution with this because PALS are high fall risks. I have only had one fall thus far when I was less shaky and one near fall outside which was frightening as it occurred in the middle of a city street. Thankfully, my husband was with me and helped me up eventually to an upright position. My daughter instituted a Fall Alert system in our house which is a true safeguard. Truly, I am discovering with more and more sensitivity and awareness of what so many others live daily, often too invisibly, the physical aspects of abilities and disabilities. As much as we think we ‘ get it” so often, we simply do not. Still learning.

Other adjustments include, for many PALS, loss of their work or professional role, loss of their income from their vocation, job, ” position. There is that sense of loss in the difference in how they now function in their family- possibly in how they were accessed or utilized before, how they were seen, their traditional role, their stamina and energy to ” keep up”, to communicate and their vision as to how they now move forward personally, socially and practically. They see the stress, worry and grief, at times, in their family members’ eyes and faces over a condition they feel powerless and perhaps are powerless to change for the better, and to ease the sadness or weight on their dearest loved ones. Often, and I experience this as well, in the few moments you actually have to think calmly of your remaining life, is the ability, and skill needed to manage it, or navigate it all. There are so many related medical or resource appointments to attend to, in and out of your house and a plan that is expected for you to follow, because those supports, as beneficial and well meaning as they truly are, can only see the slope towards death that they intellectually believe that you are surely on. I do not and cannot afford to see myself on that slope every day. Otherwise, I could not get out of bed. There is the Faith Factor for me, but there also is what many of us have- a fighting spirit that arises or that Spirit of Life that lies strongly within us (more on that later). It’s a Ken Wyman thing – my dad. He talked to me about that years ago. I saw it reside in him and in my first husband who displayed it until his last breath. So, ordering hospital beds, getting a nursing home room ready for me, or machines to help me breathe, to assist me to cough, a referral to palliative care, run counter to my Spirit of Life and the Faith Factor for vastly improved health, for healing, or so I think sometimes.

And yes, I do believe I could be healed. There is no ALS Cure. Nothing new exists and is approved medically since Lou Gehrig’s time, many decades ago, so most Believers or likely non, will look to alternative means and/or to God or their spiritual base. Yes, I do believe these symptoms could stall or slowly improve. I also know that I could die of ALS and the Faith Factor will still be intact. Maybe with God’s Spirit, in conjunction with the spirit of life I was given, will have fought the good fight. To do so though, either way, the tasks of many appointments, of the only negative news I generally receive, of too many resource visits, of trying to socialize when time might be short, get very jumbled and anxiety sets in, at times. Why – because time is precious and there is a vital need for more good, more hope, more peace, more calm, more upholding, more joy, more mobility, more meaning with fewer distractions, than meeting others’ expectations or perhaps unrealistic needs. There is such a mental and spiritual marathon in one’s mind, while adjusting to physical changes, major life changes, living in your heart “between heaven and earth”, trying to be at least civil, to ideally grateful, takes mammoth internal and external resources. Still blaring in your mind is that neon sign saying that a person ought not to be self serving and selfish. So, always for me, a struggle is there, perhaps unnecessarily, but likely for most with a terminal diagnosis, that type of mental juggling exists. However, if the spirit lives on, as I believe it does, and if that spirit resides with me now, it is this spirit that needs to be nourished for the journey, or for the staying. Much will try to detract from that and we fall prey to theses things- mostly all good and well intended. . To have some manageability over all of that might be impossible, but over a portion, is key. It is needed or else there is no sense being a human still living.

As my youngest son wisely said this Christmas to me- ( and I am glad he did ) : ” The way I see it, you already lost a lot, Mom , and I do not want to say anything or tell you to do something, or not to do something, that takes anything else away from you.” He later told me that he misses his mom as I was. He is glad I am still here but there are vast differences in me.( that is another transition) These transitions are apparent. In many ways, I am still me but there are fewer ways now to be that ” me”. Let me add here, I am deeply blessed with one daughter and three sons. Spectacular children. Each in their own way contribute so much. Still they are not outside the storm. They are in it, each in their own way trying to live their lives daily and maintain their many responsibilities while they have a mom with this decline on their mind. I have a solid husband who is in the trenches with me, most days. It is not easy on him or any of my family, immediate or extended, or dear friends. So, of course all my children and grandchildren feel this way and see it. They must and they should. It is only being real, and honest. If there is grief shared together, that is OK, and then we are better equipped to deal with and love, or attempt to accept ” what is”.

I will share no more now. These are enough “sharings”. With each transition comes a download of solutions, imagined, practical, or possible. Some take time. With no singing for example, as I can’t raise a voice in song, in the car, at home, or in a worship service in church, for instance, I am disciplining myself to do a couple of things. One is to just listen and offer the words in my mind, or move to the music. Secondly, this is the bigger discipline that I say thank you to God for all the years I was able to sing and enjoy it. I remind myself of 62 yrs of music. By far, I do not have an amazing, fantastic voice nor am I a musical scholar, by any stretch, but it is a great love and a mini gift of singing, or enjoying music. It was a main theme in my life. Although now, it rings empty, in part. I did allow it to be an expressed joy, and a needed outlet for 62 years. That was a treat. What more can ya ask for , come on…. !

( Written throughout the month of December, 2015).

Susan,
Low Tide Reflections

First Reflection – Checking in at the Three Month Mark

SJM_01
Me (2010) Hampton, NB with the Kennebecasis River in the background

On November 25th, the diagnosis of ALS upon me, will be three months old. This new Blog  is a jump into that experience and Journey, as I tend to call it – but wait – it  may not be just “‘all about ALS/Motor Neuron Disease ” a la Susan ( Wyman) Jefferies- Murray. Hopefully, it simply cannot be. ALS, the incurable disease that I am not warmly embracing, can eat up all of one’s head, heart, mind space, if one allows it. It has tried to run ahead of me on many occasions, over the rails and train tracks of  life now . It can do so even now in many sly ways. It masquerades as the essential reason for my being and that helps to create the pit that I fall into after serving all it’ s requirements, or denying it’s impact for too long.

My objective is to be honest, frankly so, at times. To me, it is necessary to be ” real” on my journey, in terms of sharing. No one is well served by repeating pat phrases, or pretending things are easy when indeed they are not, in reference to the consequences of ALS for me and my family. The latter, in fairness ,  is only to the extent that I can comprehend from my perspective some of what my loved ones, children, grandchildren, husband or siblings think or feel, or are going through. They have their own sense of this, respectfully.   One of  my aims is to share the hope and whatever tools, ideas, stories, guidance or supports that have helped me since my health decline, are assisting or will help as time goes on.

In doing so, I take the chance of being viewed as whiny, self absorbed, and morbid. To be seen as A Negative Nelley  with no heed to the positives, the benefits of time to say good bye or get my house in order, or to the miraculous and happier possibilities, is likely. Hopefully, over time, a balance from all reflections will surface, because there IS the miraculous, the hope, the daily efforts, good will, blessings from God, family, nature and others. There is the nitty gritty, too and sometimes dwelling a bit in the gray news, the night, the harsher side, brings a sense of ” Hey, I am not alone in feeling this way”, ” my sanity is not gone”, or ” suffering does occurs in life and as part of the human condition, we can get through” .

I have received solace and encouragement from others’ stories, from the foundations of my own faith in God, from the wrestling with spiritual matters, questions, pleas, even in these early months, and at times, I will share some of these moments, or foggy, dreadful hours of despair , anger, hurt, along with the rescue services of friends, family, prayers, and my higher power, which is centred in Christianity.

bible-hands1I hasten to add here, because I brought the topic of faith up, please know that this Blog, Low Tide Reflections, is not restricted to anyone , but is open to people of all belief systems, or world views. Anyone struck with a terminal or incurable illness , at some point, will ” reflect upon” the deeper meaning of life and death, in a more intense way, usually for awhile, or off and on. Most will seek solace or meaning. Most will do some form of life review, at some point. Usually they  ( we) , will comb over our actions, principles, faith in God, or in humanity , in nothingness, or themselves, in life , in nature, or science, or a variation on any theme. All or any feedback , or others’ stories of coping , healing, hope, midnight hour confessions or ability to navigate these choppy waters, are welcome. It is not a site to argue Or to debate religion or faith. However, how that manifests itself in a reader’s life, is not something I will or have any desire to judge. This is mentioned because for me, when I share anything devotional or spiritual, it will come from my life experiences and choice of faith and as a practicing Christian, when such is shared . This preface is here only because Faith, Religion, doctrines are SO VERY personal but also a sensitive topic, and cause so much animosity and breaches among people, sadly. That is not even an indirect aim of this Blog. Maybe ” to each their own” sounds bland,  but for the purpose of this personal blog, faith will not be excluded but what I share, will be my own.

Secondly, and lastly, because my tendency is to be long winded and wordy, Low Tide Reflections Blog has other modest goals. Putting aside the dealings with heavy medical crisis, ALS or other life threatening problems, this Blog will have a focus on just life. It will offer some thoughts and reflections on the innocent , simple beauty of living , the kindnesses of strangers and those we know, natures’ joys and temperaments of the seasons, the blessings and challenges of family, the bumps and bruises of dealing day to day with our own self, friends, work, rest and the truths and imaginations of children, teenagers, and those we love who gift us with pieces of their heart, time and wisdoms. Sometimes a bit of this or that is how we get through, and ” go on”.

In in terms of coping and living with a so called terminal illness, hopefully the  larger ALS portion will raise a bit more awareness for anyone scanning this Blog. I am only learning myself, and by no means is anything I state in that regard professional, or  expert. Although some links, videos or research may be posted, my personal ruminations or experiences, are just that, nothing more.

z_als_awareness_mattersThe ALS portion might arouse others to donate to the ALS Societies around your neck of the woods, because after decades, little has changed in terms of medical headway to cure or successfully treat this illness. Hopefully, or help to reduce some of the stigma and perhaps horror that can accompany just the thought of these initials. The support they receive from others helps many suffering and their families with the lending of costly equipment that is essential to quality of life in a PALS last years and months to a life changing degree.

Something in here or through a link  might cause some to research the various types of Motor Neuron a Disease which , in turn, lessens the task of the  unwell PALS (Person with Amyotrophic Lateral Sclerosis),  with trying to explain to many others how and why their decline or symptoms effect them in the manner they do; although each person with ALS symptom varies to some degree from the next. This helps establish realistic expectations and creates more comfort and confidence for all parties, and saves energy for the basics, and positive time together.

Low Tide Reflections is a variation on a name I imagined using while working at an agency where I had a fantastic opportunity to develop and facilitate a Parenting Program for Fathers. There was a wide gap os service, support and resources for dads who through a variety of reasons, some structural and historic , became separated from their children, disengaged or pushed out, or made mistakes that slowly or rapidly moved them out of their child’s day to day life and family settings. This was a needed and successful program and yes, there was pain, grief, confusion, uncertainty, misunderstanding , ” attitude”, at times, yet cautious hope from the various participants of each session. Similar , in many ways , to fumbling our way through any hard hit that life can throw our way. It was very similar to sadness, challenges of loss of any kind that cuts at the heart and the core of who we are, or who we imagine ourselves to be- the future we invested ourselves in, that either cannot or will not come to us now or will be radically changed. These are the times that look like the sea bed when the tide goes out. It is then that the glaring refuse under dear the water come  to light. Mess and  bare, blatant left overs lay there before us and nothing is hidden. There is the beauty of natural process following the directions of the powers that be- the moon, the pull of forces beyond our control, but intermingled are the garbage threads of carelessness, and the gems of shells, gems, treasures of glittering stones, sea glass and small living creatures, sea food and tumbled growth secretly thriving below our high tide thinking. High tide- when all is beautifully covered, or smoothly glossed over, or foaming and storming by the raging ocean.
Ocean_TidesWe tend to reflect when low tide in our lives occur. We are laid bare and we firm up with the sun, or are dented by the footprints of others, or softened by the moist sand and ripples of water- but we cannot cover ourselves up, or refresh ourselves by ourselves. It takes time, but we see plainly now and get a grip on our own landscape. It is a process that never ends yet we eventually are washed over, covered, comforted , lulled by waves and useful in yet another way, once low tide comes and goes; comes and go.

Although I had and others  may continued to offer that program, Positive a Parenting for Dads, through that workplace, I never found or took the time to take that ” show on the road” under my own business process as “Low Tide Productions”, it is now that I will assume the name of ” Low Tide Reflections” for this Blog as it is another personal low tide time. Low Tides are part of all of our lives due to significant changes, shock, trauma, death, divorce, loss of hope, extreme exhaustion, humiliation, or damage we do to others and others betraying us , or our loved ones, in this journey.

BSM&SJM_01
Bruce & I (Fall 2015)

Thanks to my eldest son, Luke, who has encouraged me to consider a Blog at this time, and has set it up, while tutoring me in my clumsy  attempts to navigate one. So, Good day , good night to you. Signing off , after my lengthy explanation , as a woman continuing to learn and cope during a troubling time; a mom, a wife, a grandmother, a sister, a retiree for medical reasons, a friend, a girl sometimes still in my heart, a Believer who needs as much support equal to whatever I might offer at times, but still tries to avoid much of that ” support”, facing what might be a final battle or hurdle from which many days I want to run.

Mom&Kids
Kids & I (Summer 2015)

Lord have mercy………..

 

Thank you,
Susan Jefferies – Murray