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.
I 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.
The 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.
We 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.
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.
Lord have mercy………..
Susan Jefferies – Murray