Tag Archives: ALS

Obituary

Age 64 of Eastern Passage, peacefully passed away December 12, 2016 at Arbourstone Enhanced Care Facility, Halifax, Nova Scotia.

Born in Rothesay N.B She was a daughter of the late Kenneth and Phyllis Wyman.

She was free spirit and had a huge, creative imagination. As a young girl she often could be found galloping through her back yard with make-believe horses, or living out Anne of Green Gables stories. As a young woman at the age of 19 she moved to Nova Scotia and married Donald Jefferies in 1972. After Donald Jefferies passed away in 1983, Susan continued to dedicate her life to her children, Luke and Grace, and continued this dedication to her family following her marriage to Bruce Murray in 1984 and the subsequent birth of her two sons Saxon and Jesse.

Susan was always very active and dedicated to God and worked within the church community. Her faith was the pillar of her life, always. Community became an ever-growing theme in her life as she was dedicated to her work in human/social services. Her other passions included music, politics, current events, family and friends.

Susan is survived by her husband, Bruce Murray; sons, Luke Donald Jefferies, Saxon Bruce Wyman Murray, Jesse Ernest William Murray; daughter, Grace Phyllis (Scott Aldridge) Jefferies-Aldridge; grandchildren, Courtney Newton; Kyla, Luke Jr., Terrance and Alya Jefferies; Lorenzo and Lyrique Peach; Isabella, Ava and Jewel Jefferies-Aldridge; William Murray and Landen Murray; sisters, Sharon (Gordon) Cunningham, Jane Boyd; brothers, Nealon (Karen) Wyman; Michael (Ann Rickman) Wyman; Aunts, Doreen Roberts, Dot (Mac) White; many nieces, nephews, and cousins.
Besides her parents, Susan was predeceased by her first husband, Donald Edgar Jefferies, her daughter, Stephanie Jefferies in infancy, and her brother-in-law, Carl Boyd.

Visitation will be held from 2 to 4 pm and 6 to 8 pm on Wednesday, December, 14th at Cole Harbour Funeral Home, 1234 Cole Harbour Road, Dartmouth.
A funeral Service will take place at Evangel Pentecostal Church, 1412 Cole Harbour Road, Dartmouth, on December, 15th, 2016 from 1pm to 3pm, Reverend Carmen Crockett officiating. A reception to follow in the church.

Donations may be made to the ALS Society of NS and NB.
Online condolences may be sent to www.coleharbourfuneralhome.com

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.

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