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. 😉

It’s been a long, long…long time…

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So, I realized this morning that it’s been too long since I’ve written anything here. My reasons for that are both good and terrible. Short answer, I got a new phone. That may sound like a ridiculous reason to stop posting, but hear me out! On my old phone, I had links to my WordPress account saved in my bookmarks, I click one, it automatically logs me in. Ta da! Technology at its finest. When I got my new phone I was standing at the counter at the phone store and the guy tells me to back up all my info, reset the phone and remove my sd card. Oh no! Backing up my info is something I should’ve done last night! So I quickly did a backup of everything I thought was important, pictures on the SD card, check! Contacts all conveniently attached to a Gmail address, check! Bookmarks attached to Chrome, check! Without thinking to myself, I didn’t always use Chrome. I had manymanymany bookmarks still listed under the Android browser. But, I have MS, my brain doesn’t process as quickly or clearly as it used to. I honestly didn’t even think of all those bookmarks to research I was conducting, and to important sites like, yep, my WordPress account.
The aforementioned inability to process as quickly or clearly as I used to, plus my swiftly waning superpower of remembering everything, it was literally a case of out of sight, out of mind. Without the helpful bookmarks that would magically transport me through cyberspace and automatically log me into my WordPress account, I literally forgot that I had one. Of course, I’m a dead brain walking, so cut me some slack.
So. After several weeks the little hamster in my brain woke up and slowly and rotundly began ambling along in his wheel, and a couple of lights flickered on and off in there, and eventually I realized, egads! It’s been ages since I posted to the blog that I suddenly remembered that I have! I’ve got so much research that I’d planned on writing about and it’s all right here in my bookmar…oh. Those bookmarks have long since disappeared into the aether.
Another few weeks went by, and occasionally I’d kick that fat, lazy hamster in the ass and tell him, run damn you! I know there are ideas in this damaged brain of mine, I need more power to light the dusty and disorganized mental file room! The fat little hamster just ambled slowly along in his squeaky wheel, and the lights flickered on and off some more. Having no idea of what I should research for my next article, I opted to watch more Netflix.
But then this morning, after waking in tremendous pain, and while reaching for my glasses so that I could take some medication and get up and stretch, I instead knocked my glasses onto the floor. Finding and picking things up off the floor is not my forte if I CAN see. Oh, if only you could see me struggle to first get down on the floor, then after some short while of searching I either find what I’m searching for, or decide that being on the floor is entirely too painful, then struggle with much straining and shaking of unused muscles, a behemoth struggling against both the forces of gravity and inertia, slowly and unsteadily amidst a cacophony of moans, grunts, and cursing at the gods I eventually rise. Upon standing (if you could call the hunched and uneven posture of pain and disappointment to be a standing position), I mentally, but certainly not physically, throw my arms into the air in the classic Rocky pose of triumph, then swiftly collapse onto the bed to recover from my ordeal. This, all on a good day.
However, today, since it was pain that woke me in the first place, and since it was my my glasses that I needed to retrieve, I decided to err on the side of caution. I figured I was likely to find myself stuck on the floor, and even more likely to break the glasses I was trying to find. Guess what happened to the last pair of glasses I couldn’t find on the floor, may they rest in peace. So…this morning I decided to reach down and feel around on the floor for them. Of course, this particular pair of frames are brown on top and clear on the bottom, and my vision is very swiftly waning, having jumped a full -2 points in less than 6 months time, (thank the lord that there are multiple sites from which I’m able to order extremely reasonably priced frames and lenses, however, I still spend more on the lenses than on the frames, anti-glare coating and shipping alone), but point being, I cartainly couldn’t SEE the glasses on the floor, and needing two hands for my divining rods, but only able to reach one from the bed to the floor, I proceeded to feel my way along every surface, examine everything that came into contact with my hand, and the longer I laid there, half hanging off the bed, arm extended to its furthest reach, muscles screaming in protest, I found myself cursing under my breath, apparently more forcefully than I realized, because the husband I was trying not to wake at 6am murmured resignedly, “What did you drop?” Well, too late, he was already awake, so in comes the cavalry! Two seconds later, glasses in hand, I heaved myself from the bed and decided to sit outside, watch the sunrise, and wait for the bulk of my aches and pain to subside. It’s been an hour and I’m sad to report, “No change! No change at all!” Soon the hideous doctors are going to send in an equally gimpy representative from the colony of gimps where I will henceforth be secreted away. (Not those kind of gimps! Get your mind out of the gutter…)
So, sitting outside, trying to enjoy the sunrise and ignore the screaming pain thundering throughout my body, the fat and lazy hamster who keeps my dying brain in working order woke up, climbed into his wheel, and ran for all he was worth! Lights came on all over the place! My brain shouted: WordPress blog, time to write! But then the lazy hamster ran out of breath and went back to sleep. I had no ideas for what I might research and what I might write about, but those ideas slipped off into the aether and joined my lost bookmarks.
Still, I would not be deterred! No! I was going to make an effort to make a blog post, and nothing short of death or a narcoleptic sleeping fugue would stop me!
First order of business, login! Soo…what was my password again? Twenty minutes and several tries later, eureka! Then I began to write, and that brings us up to this very moment. We are now all on the same page, provided I haven’t already bored or scared off anyone. Maybe you are my one remaining faithful reader. That’s right…YOU! Right there. Thanks for hanging in there. 🙂
There will be more to come; soon I hope. In the meantime, if you have any questions about MS, psychology, chronic pain, or even life, the universe, and everything, feel free to ask. You may leave any questions in the comments section. This will help me out, as I lost all of my previous research, and even if I don’t know the answer to your question, I do love a good research project. 😀 Just…nothing math related, please. Math has never been my forte, and now so much more difficult due to my lack of cognitive abilities and memory loss. But, anything besides math, I’m all ears. Er, eyes. 😉
Cheers!
(Written but not dictated nor read. 03/10/2015)

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