All posts by Susan Jefferies-Murray

Susan Jefferies-Murray

About Susan Jefferies-Murray

Yes, another female “Baby Boomer” thinking she has something to say.... A mother of four, grandmother of a dozen, and a wife with over 25 years of front line and management work in the Human Service area as well as a decade of prior work in the federal government and private sectors. Over the years I have become skilled at juggling many balls and wearing many hats. After staring down a few giants in life and of course, tumbling down a few times, I always manage to get back up, dust myself off and carry on. I now face the ultimate challenge of living after being diagnosed with an incurable illness.

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