Below is a link to a blog entitled Choices: How I Live with ALS, written by Barbara Brenner She was another blogger who helped to increse ALS awareness through her writing and her work has inspired many persons with ALS including myself. Healthy Barb, passed away in 2013 but her blogs still continue to impact lives daily. I though I would share this with you.
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).
Low Tide Reflections
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