Happy Birthday Luc! You are one remarkable being . . . it is a privilege just being with you.
I will resume posting within the next few months. Thanks to all who visit my site.
Happy Birthday Luc! You are one remarkable being . . . it is a privilege just being with you.
I will resume posting within the next few months. Thanks to all who visit my site.
Be content with what you have;
rejoice in the way things are.
When you realize there is nothing lacking,
the whole world belongs to you.
1. The quality or condition of being easy to understand or to do.
2. The quality or condition of being plain or natural.
3. Freedom from complexity.
4. Absence of luxury.
Number 3 appeals the most, but all of the definitions will do. Living simply has become important to me. Perhaps my aspiration stems from the physical limitations encountered in living with PLS, as they’ve caused me to reduce activities, discourse, and diversions to a minimum.
‘Tis the gift to be simple, ’tis the gift to be free
Its been pretty easy to cut down on diversions and activities, but what I’m having a hard time with is the simplifying of my mind – getting it clear and steady; cleaning it up.
‘Tis the gift to come down where we ought to be
Most of us rush through life like we’re at some kind of parade. We kill Time, run from one thing to another, one plan to another; we need just the right color, just the right fit. We covet, squander, and malign. Its no wonder that our minds are muddied; certainly mine is – being more crippled than the body in which it inhabits.
In my earlier years I wanted to be “important;” I wanted to own costly possessions, be smart and fashionable; a successful young woman. Fortunately, I got over it. I’m still caught in that image thing though; I view and assess my crooked self through others’ eyes, and should I be judged too harshly, I make sure I present an acceptable image by speaking (garbled as it is) intelligently, looking attractive, and being “aware.” See, I fear that I’ll be typed as a “handicapped old woman.” I’m a prisoner to the approval of others.
And when we find ourselves in the place just right
I cleave to those of my friends (you, Mary and Robbie, Cheryl and Annie) who know how to live “low to the ground.” They have been gifted with clarity of mind, and their actions and words are simple; unadorned.
‘Twill be in the valley of love and delight
Our Time is sacred, and we must remain vigilant, lest it be whiled away. How do we live this fleeting life? Of what quality are our moments? When I ride into the wind on my scooter, full throttle down a hill, with Luc running next to me, I’m happy; I know I’m alive. And I like how a soft cotton t-shirt feels against my skin; I like that part of my physical slowness that enables scenes, sounds and smells to not escape my notice. I like my hard-won awareness that these moments are my precious life – this is it.
When true simplicity is gain’d
When I visit doctors – those gifted “mechanics,” skilled in maintaining body parts, implanting devices, and dispensing drugs that override faulty function – how do I stay free from tangled thinking when, once again, I’m reminded of my mortality? And how do I maintain clarity over the shoring up of a body that is in the process of sinking? Sometimes, I would simply like to lie down on the earth in peaceful surrender.
To bow and to bend we shan’t be asham’d
I remind myself that “simple” doesn’t require the wearing of a monk’s robe, nor the relinquishing of that which gives one pleasure. The purest mind and noblest heart may be found in one lavishly made-up; cleavage full, hair dyed, and jewelry bangled.
We’re all walking, talking around, carrying our burdens. Perhaps these burdens could be impetus for refinement; wearing away our coarseness to a smooth, simple shine.
To turn, turn will be our delight Till by turning, turning we come ’round right.
“Simple Gifts“ ~ Shaker Dance Song
Prosody. If I didn’t know what the word meant, I’d guess that it was a business term, similar to the word, escrow. But it refers to the patterns of stress and intonation that we give to words when we are speaking; its the rhythm and beat of how we talk. Prosody is a word that reminds me a bit of melody, or rhapsody; the name one would use to describe the Song of Language. I can’t help but wonder, should I lose my voice entirely, becoming prosody-less – that I’d be falling out of tune, missing the beat; no longer in sync with others.
Kristie Spencer, Associate Professor at the University of Washington’s Department of Speech and Hearing Sciences, used this weighty word when she was addressing her speech-language pathology grad students. The reason I know this is because I was present, having tagged along with my PLS friend, Dave Irvine, who had been invited to speak to Kristie’s class on the challenges of living with dysarthria. I was surprised by my willingness to attend, as speaking in front of an audience is something that I would never choose to do. But I felt compelled to seize the opportunity to speak-up about what it is like to be in the world with only half of a voice.
Dave and I share the same neurologist, and that’s how we initially met. Dave is soft-spoken (even sans PLS), sincere, and has a quiet dignity about him. An activist for the disabled, he is one of the Washington State Ambassadors for the Spastic Paraplegia Foundation. He has been my #1 advocate in promoting this blog, and we have come to rely on each others empathy when the “PLS-blues” come round. Both of us are fortunate in that we are not “victims;” oh, we have our pity-parties, but we’re savvy and seasoned enough to not wallow there for long.
The class was Assessment and Management of Neurologic Motor Speech Disorders; a two-year intensive course, that is part academic, part working clinical rotations in the UW’s Speech and Hearing Clinic. In the course’s second year, students add to their expertise by branching-out to hospitals, rehab centers, schools and private practices in the greater Seattle area. Kudos to Professor Spencer’s acumen in launching such fine people into the medical world; they offered Dave and I insightful, intelligent questions and comments. I named this post “class” because that’s exactly what they had.
At start of class, Kristie gave each of us an amp and a microphone, and we sat, the three of us, facing the students. (Thanks to Dave’s friend, Greg Mathess, for the photos.)
Since Dave had to leave early, he pretty much held center stage and fielded the questions. His voice is more spastic than mine, and I had so much respect for him as he eloquently spoke, through broken words, of the struggles and insights one encounters when they are no longer adept at using the spoken word.
He shared his experience of living with a voice in the process of decline, and what it is like to be glossed-over and discounted by strangers when they are incapable of understanding his words.
Dave left at break-time, and when the doors once again closed for the last half of class, I unleashed Luc for his social fix – which sent him into heaven . . . so many hands to pet him, so many smells, and so much attention. I didn’t see him for the rest of the class; reportedly, he was snugged amid feet and chairs, ensconced in an orb of academic affection. Must admit to the pride I felt when I blew my whistle for him to “Come,” and “Come” he did. That guy is one awesome dog.
Then it was my turn to talk. It was easy, and I thought about that later; why it was so easy being easy, and figured out that those people – students and Kristie – made me feel welcome; made me feel regarded. I was an equal among them, which I rarely feel when in public anymore.
They really listened to me. I talked, and I said a lot:
I told them that our voices are a gateway to the outer world; through them, we have the power to create an image of how we want others to see us.
I told them that when I’m labile, I watch my body cry and am half-frustrated, half-fascinated that it does so – I’m only doing half of the crying; what’s really behind the flood of emotion is a floundering signal beamed from a faulty brain.
I shared that when PLS hit, the image of what I had thought of as the real Me, scattered in the wind, like so much dust. (A lovely woman asked what image I now had of myself; I can’t recall my exact response, other than “a hip person” and “old woman,” which made me feel arrogant and self-deprecating all in a one-sentenced reply).
I shared with them the philosophy that rescues me from the “heavies;” snapping into Zen here-and-now, I remind myself (continually) that life is flux, passing, nothing staying the same, nothing lasting, all impermanence. I’m left with the knowledge that I am not in control of my life, other than how I respond to what is dumped on my path; nothing for it really, other than live in the present.
I even revealed that I’m not easy to live with; my will is strong (ask my husband), and resents outside opinion. But, that gnarly will has been my anchor and might when the moments get rough.
I told them that even though I have an iPad app that is very capable of speaking for me, it will never replace the lilt, or heft and breadth that I’ve been able to weave into words through my voice.
I shared that, were I forced to choose between losing my voice or the ability to use my legs, I’d suffer in deciding which to choose.
It felt so good to speak out, and yet, there’s so much that I didn’t say, that I wished I had:
I wish I had thanked them for their sincere attention; because that attention redeemed me from a sometimes-felt meekness when out in public.
I wish they knew about the times, when my voice is especially weak and feeble – that on hearing it, I feel diminished, and do battle against seeing myself as a person of little consequence; a weak personality.
And I wished that I had mentioned how imperative it is to be fully alive in these bodies of ours; ’cause, at any given moment, we’re gonna die – Life is going to sneak-up and snuff out our flame.
I would have liked to have asked them – as I’m living with a neurological disorder that is in my face, constantly reminding me of my mortality – wouldn’t they think that would be impetus enough for me to “get my act together?” Strangely, that has not been the case, as I continue to live by sloppy attitudes, unkindness towards others, and fawning self-absorption. How many layers have to be stripped away before we become genuinely kind, sincere and open-hearted?
In my late teens – early 20′s, I read a lot of Carlos Castaneda’s, Don Juan series. I even re-read them in my 30′s. Though I no longer want to be a crow, Don Juan’s philosophy has stayed with me: Life is mysterious and unpredictable, and none of us have any time to indulge in petty self-importance and crappy attitudes. None of us.
“Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live.”
I go to a yoga class twice a week. A friend who also attends, keeps a casual vigil for when I arrive, then helps me unroll my mat and get set-up. I have never asked her to do this, she just does, in an easy, helpful manner. Everyone in that class are “normal;” meaning that they are able-bodied people. I’m the odd one out, but it works if I adjust some of the poses; when they stand, I stand, holding onto my scooter. If a standing pose requires movement of limb, I kneel, and do the pose from that level. I have always felt welcome and accepted as I am. The times that are hard, when I can’t do a pose or don’t have the stamina to hold it for very long, I remind myself to do what I can, and that it doesn’t matter what others think. So far its working. Luc lies on his dog mat, at my head, and if I need some fast comfort, its easy to reach back to touch him.
I was nervous the first time I attended class. I worried that I wouldn’t be able to do the poses; or I would fall and have a freak-out crying spell; or that people in the class would consider me an intrusion on their meditative yoga practice. Truth was, I was mainly uncomfortable about being high-profile; noticed as I scooted in. It took some will to muster up the courage to go.
Many people living with disabilities utilize a good deal of will on a daily basis. They have tenacity. Perhaps fortune has favored them with a healthy self-regard, so that sinking into self-pity and fear scares them more than fighting to live in a world that doesn’t quite fit. We disableds perform heroic feats daily, and unless you’re one of us, you can’t know how damn hard we work at it, and what a damn fine job we do.
We skillfully navigate the outer world; via wheelchair or scooter, traversing public thoroughfares and marketplaces, disdaining the stares of the curious, efficiently (if not expediently) attending to the duties of life. We display real prowess upon entering public bathrooms, wheeling into often impossibly difficult and poorly designed handicapped cubicles, adroitly managing the seat, to door-lock, to toilet transfer; and when finished, artfully balancing to grab a handful of toilet paper (which often we have to pull, one stingy square at a time). But we get it done with elan, unlock the cubicle door, reverse ourselves to the sink to complete our mission. There’s extra brownie-points for those of us who do this with a service dog in tow.
And speaking of those handlers and their fine service dogs; consider the responsibility and awareness that is required to conduct our dogs throughout our day. We have toiled hard, dogs and handlers alike, to become solid working teams. Out in public, we have learned to magnanimously deal with that portion of the population unenlightened as to working-dog protocol: some people go all warm and fuzzy when they spot a service dog, and interrupt our rhythm and focus by stepping up to pet and coo. Folks, we’re really not here to entertain you; please collect yourselves and get back to the business-at-hand. Remember too, that we perform perfectly well without your assistance or intervention; since we are proficient in conducting ourselves through crowds, buildings, hospitals, meetings, and across busy intersections, why would we need you to tell our dogs to “sit” or “come?”
Here’s to our empathy and understanding when the able-bodied try to help us when we’d rather do it ourselves – their assistance diminishes our independence – but their intention is kind, and we comfort ourselves in knowing our strengths. When we fall, we’d most often like to get up on our own, and not have others running to our aide, asking too many questions and trying to help in too many ways. We’re learning to handle these times with dignity as we let ourselves be picked-up like someone’s dropped rag doll.
We earnestly strive to maintain our perspective when people address us through our spouses or friends, too uncomfortable to relate to us directly. And how gracious we’ve become in accepting assistance; good, kind people opening our doors, putting groceries into our scooter baskets, and giving us right-of-way when crossing the street . . . we have weathered the loss of our autonomy well.
It is difficult to hold back our irritation when acquaintances greet us with somber and pitying countenances; do you really think that our lives are a hell-on-wheels? We sense that you are projecting, and that you can’t imagine yourself in our shoes; your limited scope only perceives pain and misery in the lives that we lead.
We are grateful for those cheerily hurled comments . . . “you’re still DRIVING?” . . . “well, its good to see you’re getting out;” . . . “gee, your handwriting is still pretty good;” . . . though you haven’t a clue that we have to deal with such thoughtless remarks, you have taught us forbearance when facing awkward moments, and we thank you for that.
Please realize that we don’t want to play it too safe; risk and daring are necessary components for a full life; and we truly appreciate it when people ask us for favors; since we are used to taking so much of the time, when an opportunity to give comes our way, it is golden.
We are painfully aware of how those close to us have suffered their own losses through our disabilities: Our spouses have lost their equal in partnership, have to take on greater financial and household responsibility, and are forced into caregiver roles; our children have lost their independent parent, and have to conjure patience and fortitude beyond their years to deal with such radical change; and our friends, how grateful we are that they are blind to our brokenness; they know how to help us just enough, and lovingly, willingly, fabricate makeshift ramps to keep us at their hearths.
I like to hear my husband tell people that “we” completed some project or another, when in actuality he does 80% of the work now. When he says that, I feel included; one of the “normals.”
“Remember the tattoo on your arm,” was his comment at dinner the other night, when he sensed me veering towards self-pity. Penned in Sanskrit, impermanence adorns my arm as a reminder that we are in this life but for a short time – only passing through.
My posts can be a long time in the writing, and those who honor me in reading them will have to exercise patience towards my sporadic delivery. I am slow – a friend has said “painfully” so – in all things, and composing posts is no exception. I steal time from my day in order to write, favoring a keyboard to a kitchen counter.
Seems like I’m spending far more time at that counter though; a month ago I started a new food regimen – no grains, dairy, sugar or starch, no corn, potatoes, or legumes – only grass-fed meats, organically grown vegetables, fruits, nuts, seeds, and fats, the unprocessed kind – coconut, olive, and sesame oils, and those naturally rendered from the grass-fed, organic meats. I cringe slightly in having to declare this, as I’m not too keen on food trends, and the way people get when they follow one, almost revering it like some sort of deity, a personal food-god. I’m weary of groupies who are into The Zone, The Atkins, The South Beach, vegan, soy, gluten-free, juice-fast lane. Our culture is so distressingly affluent that we indulge too freely, making a hobby out of how we choose to eat. But now I’m grouping with the groupies, trending my way onto the Paleo Diet that I’ve described above. I’m going to be chill, however, and keep my wits about me in eating this way; I won’t lapse into calling my house a cave, nor will I laud it over anyone that “going Paleo” is the only right way to eat.
Those physical changes just keep on a’ happening, and I can’t calmly sit back and watch my body go-to-pieces without trying to arm and fortify it against the ravages of its own dis-order. What if eating foods abundant in vitamins and minerals can halt Progression; and if not halt, then at least perhaps, slow it down?
Spasticity will have its way:
Balance is more of an issue now, and its getting pretty dicey to relax too much when I’m standing still; one little wavering movement and I’d keel over . . (when still using a walker to get around, I was at the post office, lots of people, me trying to stealthily move between two of them when one turned and brushed against me with his (large) stomach; sent me flying to the floor. I cried. In public. A kind employee brought me a box of tissues, Luc hovered looking concerned, and I cried and cried and cried).
My facial muscles have to work harder to enunciate words; I caught my reflection in the mirror when I was speaking to my daughter, and was astonished to see the exaggerated movements my face made in order to form words; I looked like I was miming, pretending to talk.
The fingers on my right hand “lock” around the object they are holding (like a kitchen knife) more often, and I have to manually unbend them from the shape they have assumed in holding the object.
There are times when panic stirs its wicked little head, knocking me off of center, railing at my body’s slow demise. Maybe one day I’ll crack open, stunned with terror to be living in a body that is shorting-out, falling apart, on its way . . . d o w n.
I now spend more time chopping vegetables and having to prepare anything that I want to put into my mouth. (I miss dark chocolate, yogurt, and popcorn.) But I am steadfast in my resolve, and curious to find out how much of an impact this way of eating will have on my body. I told my oldest daughter, a nurse, that I wanted to reset my biology; she laughed, said it couldn’t be done. OK then; what if I can so completely flood my cells – my biology – with vital nourishment, that they spark my beloved neural pathways into regenerative frenzy, restoring me to health and vigor?
And yet . . . there’s this niggling feeling within, the kind one gets prior to the dawning of realization: in my valiant quest for health, am I so narrowly fixated on the healing of the body that I’m neglecting the nurturing of the spirit; tending to the frosting instead of the cake? Surely, it is sound theory to attempt to restore physical well-being, to the extent that is possible; but in my restoring am I losing precious moments from my living? It would be ironic to extend longevity only to end up wearing a feed tube. Maybe I’m confused in my priorities, and too scared to be content with “enough.”
She who is wise breaks free to simply Live, without needing life to be any different than it is.
The medical term for it is Sialorrhea, a word that leaves one feeling a bit itchy. It means “drooling,” and that is what I’ve started to do. It happens when my head is in a downward position while I’m talking; when I’m licking food off my fingers; or lately, if I don’t swallow before opening my mouth to speak. Saliva now loiters in my mouth – a lot of it. Guess those weakened facial muscles can’t regulate the flow like they used too.
This is not an attractive situation. I wondered what my neighbor thought yesterday – talking to me while I weeded – as he witnessed the long line of drool that went spinning from my mouth, landed on my jacket sleeve, and ended up attaching itself to a rock.
My body is on an ever-roiling course downward, and I wonder about how I’ll play-out physically. Will I repel others as drooling increases? Have I already gone down a notch or two in my neighbor’s eyes? And here’s a topper: will I still be considered “socially acceptable?”
Indeed, drooling is one of our social taboos, right up there alongside picking one’s nose in public.
How do I cultivate a dignified demeanor that can mask my embarrassment when I drool; a calm exterior that will serve as armor against people’s judgement, pity, and discomfort? You see, its faulty functioning of the body that is the cause of the drooling. Its not me; nothing to do with my worth, or being that is at fault. I must seize this clarity of fact, use it to stabilize and hold me fast.
Sometimes I want to shout to the world that Real People reside in these broken, palsied bodies. “We’re alive in here, we’re just like you – maybe we’re wiser than you because we are closer to the truth of ourselves – you whole people who still walk and talk around, filling yourselves with diversions that shield you from the REAL” (the Raw, the Edge, the Holy Unpredictability that life is).
But I won’t shout; I was once there too, on that other side, and if I had seen someone drool, I would probably have judged and turned away.
I am no longer able to string words together fast enough for easy comprehension, and people find it difficult to interpret what I’m saying. Those who don’t know me are completely mystified by my delivery; a few too, wonder at my cognitive ability.
My slothful cadence is also hard on my husband, who has been trying to get me to talk less for over 2 years now. His hearing is no longer peak, and the soft drone of my voice is not on his radar anymore. I drive him nuts when I report on the trivial, as it forces him to stop what he’s doing, so he can focus all his attention on what I’m saying. He gets frustrated when he has to work so hard to hear content that has no importance.
In the early days, when I was told that I might lose the ability to speak, I thought that speech technology was the solution; a tool for saving me from the silence. I even looked forward to mastering the software. But now that my voice is fading, I find that I have absolutely no interest in cleverly jamming away on a keyboard, while a speaker spouts robotic syllables at my listener. Anyway, that technology was developed for expressing needs, wants; not for sharing of self, heart, truth, or grief.
Is silence really “golden?” I think (or more likely romanticize) about religious orders that vow to a lifetime of silence, trading-in words for illumination. I have fantasized over re-inventing myself into the-woman-of-few-words, enigmatic and interesting. Oh . . . and disabled. Forgot that part.
Would the artful cultivation of body language be enough to satisfy the requirements of social communion? Could I unfold the conversation with only a look? Is silence adequate enough to comfort, cajole, or convey dissent? Can it render further discourse?
Perhaps I’m missing the point entirely, and that this is Real Opportunity – disguised as loss – to unearth that deeper portion of myself, beyond words. Or do I merely romanticize?
It is not uncommon for people to tell me that I inspire them. Depending on how they say it, it means that I have not let having a disability get in the way of living my life; or, compared to my “problems” they don’t have anything to complain about. I prefer the first meaning, though would rather not hear the comment at all, as it suggests that what I deal with must be really bad.
Getting PLS was bad, but pitting that against events such as war, torture, or loss (of everything that comprised your life as you knew it), takes the punch out of it somehow. Hang out in the disabled parking area of any children’s hospital and watch as courageous parents place their half-whole children into tiny wheelchairs equipped with oxygen tanks, special headrests and straps, and you begin to realize that the burden you carry belongs to others as well.
I fashion my attitude from such realizations, and they serve as props for when the going gets tough. Yeah, having your whole nervous system attacked, radicals freely reigning, is a drag. But many things in life are, and people have to deal with some really heavy shit. That’s how it is. Others are suffering; there are horrors in the world that you know nothing of (it would rake your heart if you did). Life is passing, fleeting, so live, now, live.