What Dylan Knew

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I read the most brilliant article today, and would like to share it, as well as my thoughts concerning its topics, a shortened version of which I left in comment form after the article (with a quite embarrassing typo). Anyone with MS, a disability, or know anyone with such, please read: https://multiplesclerosis.net/living-with-ms/not-born-this-way/

The author, Marc discusses, among other things, personal identity conveyed through fashion, and how it relates to him. For me, it’s only been 4 years since my diagnosis, but to say “only” seems such an understatement. I refer to everything before as My Former Life, because that’s truly how it feels. As far as appearance goes, I was never one to primp or take any extra care in my appearance, but honestly I didn’t really need to. My hair was wash and go, face usually unadorned, and it was fine that way, I certainly was never accused of being plain. My clothing style was always relaxed, but it was a style. I dressed body shape and age appropriately with emphasis on ease and comfort, but also in a flattering manner, a fashion all my own, what my friends and peers believed to be both effortless and brave, as I never spent the money and time they did preparing for the day, and as far as I was concerned the reason I didn’t make much of an effort (or feel brave not doing so) was because I didn’t really care. When I think back now I realize that I did care, just not enough to inconvenience myself, only just enough that I did choose clothes specifically, but only with care at an almost subconscious level, because really it almost WAS effortless for me. It was an afterthought, get dressed and go. All of my clothes were suited to me because I chose them carefully when I shopped, and I did spend much time shopping. Clothes shopping=fun, right? Today, not so much. Not only can I not afford to buy clothes to fit my new frame, but I really wouldn’t have the energy for a shopping excursion. As many women can attest, weight gain and clothes shopping aren’t easy companions, and just the thought of such a trip makes me feel exhausted with nervous anticipation. As such, I own one pair of jeans that fits comfortably but now has a broken zipper, one pair that fits quite uncomfortably, maybe 2 properly fitting shirts, and an assortment of pajama pants that I’ve deemed appropriate for out of the house wear. I wear slippers almost everywhere, especially if it’s a wheelchair day. Why bother with shoes? I’d expend half the day’s energy trying to put the damn things on anyway.
I try not to think so hard about My Former Life. I certainly did not do so many exciting things with my life as Marc did, but it was full, productive, fun. In my professional life I worked hard to chisel out a career. Based on education and duration I say I was a counselor, but my work experience is all over the map and mostly revolves around two tethers that are human services and entertainment. An odd combination maybe, but they were two things I’ve always been drawn to, and recognized from a young enough age that entertainment would never be a lucrative career choice, not that human services ever made me a lot of money. Throughout my life in addition to doing counseling and working with developmentally disabled people, I owned a printing business, worked at a radio station, directed tv shows, did stage lighting, professional makeup for film and camera, and in my youth, was a model and a stage actress. For fun, I was a dancer and taught dance classes. I miss dancing, and I miss counseling, and I seriously miss driving fast with the top down. For me, my car represented my freedom and nothing was more relaxing to me than hauling ass down the freeway at night, wind in my hair, cranking the music and singing along like I was the only person in the world. Now I don’t even own a car, (it may be in both our names but it’s definitely my husband’s), and when I do drive, which is becoming increasingly rare, I do so slowly, carefully, hunched over the wheel tense with concentration.
I feel as if I’ve been demoted in life. Once vibrant, exciting, fun, now dull and drab. Once respected on a personal and professional level, now quietly humored or outright ignored. I worked with disabled people, in some manner or another, all my life. I heard their stories, shared their triumphs and sorrows, and was definitely no stranger to their struggles. Of course the view is certainly different from my own wheelchair, and the experience of becoming increasingly disabled is far more nuanced than I ever could’ve imagined, but at least in some fashion or another, it is familiar. What is most difficult is this feeling of becoming irrelevant, of losing status, of being pushed aside. My memory and cognition have suffered a great deal. I don’t speak as clearly or think as quickly. As such, I’m easily dismissed. In the time it takes me to complete a thought, that thought has become irrelevant. I believe, more than ever, that I can now empathize with the struggles of increased age more than ever before in my life. In such a short time I lost my career, my youth, my appearance, my self-sufficiency, my memory, and with all of those things, my self-confidence. I find myself telling the same stories over and over again, either because I don’t remember telling them or because I have nothing new to say, and being ignored. Or telling a story about my day that becomes long and meandering because I’m unable to properly organize my thoughts, and discovering that my audience is not so amused by the retelling as I was by the experience, and can’t you just remember a grandparent or great aunt who did exactly these things? I’ll be 37 in two weeks, but now understand my 80 year old grandmother, and believe I understand why she did the things that she did. I know now on more than just a sympathetic level, none of us wants to become obsolete with great dignity and grace, we want to fight and struggle and scream our way there, to rage against the dying of the light, as it were. The only question is, do we endure this struggle internally, or for everyone to see? I’ve often joked, even on this blog, that when I’m really old and living in a home in 5 years, will I be one of the ladies who quietly stares at the wall and is otherwise a pleasure to be around, or one of the old ladies who screams and throws her poo? I still don’t know. I could see it going both ways. I can understand being filled with rage at being talked down to as if I were a child, at the impatience of others while I take a very long time to do a simple task, at the confusion of knowing all I’ve lost, of knowing that I used to be able to do these things and used to remember so much more, and that there’s no way to get them back. I really don’t know if I’ll be able to face these things with outward calm, or if I’ll show my rage to everyone who cares enough to try to help me. I guess we’ll find out in 5 years. 😉

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To Dance is to Live

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“We barely remember what came before this precious moment. Choosing to be here, right now, in this body…This body makes me feel eternal. All this pain is an illusion.”
-Maynard James Keenan

I’ve begun teaching a beginning dance class, and in my quest to teach my students, slowly but surely I’m learning to dance again myself. I have many limitations, many new aches and pains, sometimes a lengthy and debilitating recovery period keeping me bedridden for days after each lesson, but still…it feels so good! I feel like I’m contributing in some way, and it’s bizarre how important that contribution to the world becomes when you’re no longer able to provide it. I’m teaching people to feel as good about themselves as I did when I was discovering dance, and just maybe some of those dancers will surpass me and go on to learn from others and become great dancers and I can feel honored to be a part of that. However, even if all I get out of this is the opportunity to force myself out of bed once a week, to make myself stand in front of others and hide how weak I’ve become, how much my muscles and joints protest, how reduced my stamina, and hopefully with time regain some of these things even if to a lesser extent than what I ever had when I was healthy, and in the process teach my students that they can feel graceful, beautiful, happy, and express themselves in a form that they never knew of before, I will consider it a job well done.
I’ve always loved teaching others to dance. More than inspiring them through performance, I love showing others that they, too, can learn to do the things that left me so awestruck the first time I saw others do them. I wanted to know all there was to know about it, and I see the light in my students’ eyes when they have mastered new moves, the pride and joy they feel when they’re finally knowledgeable enough to just cut loose and put those moves to use and just dance!
Of all the things I’ve lost from becoming ill, dancing has been my greatest regret. I’ve lost my independence, my livelihood, my ability to maintain my household in a manner of which I may feel proud and comfortable. I’ve lost lifelong friends, and that certainly hurts a great deal, but deep down I believe that if those friends were true they would not have abandoned me in my greatest time of need. I no longer enjoy the lifestyle to which I was formerly accustomed, I am destitute, poor beyond my greatest imaging, however I was poor growing up and while I worked very hard to secure myself the proper education to acquire gainful employment and, for a time, enjoyed a much more lavish lifestyle, I’m no stranger to being poor. My body, mind, and soul are unwell in ways that I never expected at such a young age, but these are all things that I did expect to experience at some point in my life, granted perhaps 30-40 years from now, but I can eventually make peace with the cards life has dealt me. But to not be able to dance was akin to losing my ability to see colors or hear music, to smell, or to feel textures. My life suddenly became very drab and without a great and wonderful joy, and on many occasions I almost wished to have never known that joy and so never experience its heartbreaking loss.
Tonight I gave my students an opportunity to use the skills they’ve learned thus far to just listen to the music and dance to it. No more tedious drills, no more practice, just feel the music and dance, and I danced with them, and yes my skills are much reduced, and my body screams in agony at many movements and likely will continue to do so for as long as I’m able to continue, but I still feel more alive dancing in pain than I do lying in bed in pain, so I will continue to push myself to try harder, work harder, relearn what I’ve lost, accommodate my disabilities, make myself stronger.
Dancing has never been easy for me. I’ve always had issues with my back that would hinder my abilities to do certain movements, or that would cause me to have to take months long hiatus while recovering from ruptured disks and excruciating pain, but I always continued practicing anything that I was able while on hiatus. I would do muscle isolations, arm and hand movements, anything to keep me practicing.
I think now that I told myself I couldn’t dance because I had given up too soon. I’d thrown in the towel. I was so deeply in mourning over all that I’d lost and any efforts I made to attempt to dance ended in me being in so much pain, feeling so weak, being dizzy, delirious, and bedridden for days that I had eventually put it on the list of things that I could not do, rather than the list of things that I could not do as well as before. I know it’s possible that some day I may truly be unable to dance at all. I may permanently lose fine and gross motor skills, be wheelchair bound, or have such debilitation in my back that I may finally have to succumb to the vertebral fusions that I’ve so long been unwilling to do as it will severely decrease my range of motion and make dancing virtually impossible. I know that I may lose dancing for good, which is why it’s so important to me that I continue to force myself to do it now while I still can.
And I plan to do just that.

“To dance is to live.”
-Stephen King

Multiple Sclerosis: A Quick Summary of Symptomology

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Multiple Sclerosis is an autoimmune disorder that causes the body to attack myelin, which protects nerve fibers in the central nervous system, which causes scarring known as lesions in the brain and spine. As the myelin deteriorates it is akin to having wiring without insulation. Signals get crossed and confused, causing all manner of incorrect information to be transmitted to the rest of the body which manifests in many different ways. It can cause neuralgia (extreme pain in the nerve pathways), paresthesia (feelings of tingling, skin crawling, painful stinging like multiple bug bites, or pins and needles like a limb has fallen asleep), allodynia (pain or discomfort to touch that is non-noxious or not harmful such as clothing rubbing against the skin), muscle spasms, muscle spasticity (hard, painful contractions of the muscles that will not relax or release), as well as other debilitating symptoms such as optic neuritis (swelling of the optic nerves which can be extremely painful, and can cause vision changes such as double vision, cloudy vision, light sensitivity, color changes, and even temporary or permanent blindness), and temporary or permanent loss of motor control or muscle function anywhere in the body. This includes the heart and vascular system, and diaphragm, lungs and respiratory system. In addition, MS flares ups, or “exacerbations” cause inflammation in the brain which, over time, lead to structural brain changes, the most common of which is shrinkage. The brain literally shrinks, and many of the parts of the brain that are responsible for regulating such actions as sleep, appetite and mood no longer function at full capacity, if at all. Many people with MS suffer from mood disorders and sleep disorders that are not easily treated by traditional medications.
The most common symptoms of MS are fatigue (and this is not just how you feel tired after working a 10 hour shift, it’s being so tired even after sleeping 10 hours that you can barely stay awake, barely get out of bed to get food or use the bathroom, and no matter how much you nap throughout the day the fatigue persists), loss of balance and vertigo (which also tends to cause nausea and a lot of stumbling and falling down), and what is known as “brain fog” or “cog fog”, which is a cognitive disruption, an inability to think clearly and is often accompanied by confusion, dissociation, slow reaction times (both physically and mentally) and disorientation. Often the combination of these common symptoms, the fatigue, loss of balance and brain fog, tend to cause one to appear drunk, which is very frustrating for many people with MS. People are also often accused of laziness due to their fatigue, are treated as if they’re mentally challenged, and many physicians will insist that these symptoms, especially changes in mood, fatigue and sleep disturbance, have a psychological root cause, rather than a physical one, and will continue to refer them back to a psych prescriber. These issues are both barriers to treatment, and barriers to understanding by the person’s friends and family.
What must be understood is that every person’s MS manifests differently and at different rates, and there a 4 types of MS, some types generally more debilitating than others.
So if you’ve ever seen or heard of someone with MS who is perhaps very high functioning, then you encounter another person with MS who is less so, please do not compare them, or tell the one person that the other person you know can still work or exercise or go out dancing or etc and that if they only TRIED they’d feel better, because one person may be able to do these things while another cannot.
Educate yourself. MS is sadly a very common, and very debilitating disease, but it’s also very poorly understood. Learn about each new person’s struggles and support them in whatever way help THEM, not by comparing them to others, but by learning what the individual can and cannot do, and assisting them in whatever way might benefit their situation the most, even if all you’re doing is providing a sympathetic ear.
None of us asked for this disease, and if given the choice, we all would trade to get back our old lives in a heartbeat. We’re not lazy, we’re not moping around, we’re not hamming it up, we’re sick. Imagine how you would feel if you had lesions in your brain that caused even one of these symptoms to occur all day every day, and decide what your response to that situation might be before passing judgement on anyone else. All we’re asking is a little understanding and empathy.

Dream a little dream…

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The music moves all around me and I with it, my body in perfect harmony with sound, no thought in my head but the sheer joy of it. The feel of my muscles as they move and flex, my arms long and graceful extending out to beautiful floreos, I glide across the floor, spinning, colorful silk veils enveloping my body then flowing outward as they’re deftly manipulated, as much an extension of my body as a limb. I feel the connectedness of all things, the many instruments becoming one sound, one sound becoming a song, my movements melding with sound to create nothing short of a work of art that shouts out to the world “I’m alive! I’m free!”, and I can’t help but smile for the simple pleasure of dancing. Oh it’s been so long since I’ve danced! Then I wonder, why is that? My movements falter. Why haven’t I done the thing I love to do most in life for so very long? I stop, puzzled. Where am I, and why do I hurt so badly?
That’s when I woke up this morning, and cried. The reality is, I hurt all over my body every day. I have no balance anymore. My muscles are weak and spastic. Once graceful and strong, I now have difficulty doing simple physical tasks, or walking across an open room without fear of falling down. I’ll likely never dance again. At least, not like I used to. I’m tired of people telling me I can dance “in spirit” or “in my head”. I’ve lost a major part of my life, myself, my identify, my greatest joy in life, and memories of that thing will not replace it. I could also sit around all day fantasizing about the masters I’ll never earn, the career I’ve lost, the independence I no longer have, the days when I didn’t wake throughout the night in excruciating pain, but none of those fantasies will change the fact that this is my new normal. This is the hand nature has dealt me and I have to make the best of it.