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. 😉

Joke’s On Me

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So…site (to remain anonymous, but suffice to say it is a reputable and nationally read news publication), tells me I must register to comment on an article. Fill out the registration form, it says I’m already registered. I try to log in but cannot remember password, so click and fill out password retrieval protocols, site emails me a link, click link, redirects back to site and reset password, successfully log in. Now site tells me in order to comment on article I must confirm email address. In order to do this I’m asked to fill in a form which will generate a link sent to my email which I must click and will redirect me back to the site. Didn’t I just do that? Whatever. Click and fill out email confirmation protocols, site emails me a link, click link, redirects back to site AGAIN aaand email address confirmed! Go back to original article only to discover…all comments gone. Only a heading stating “Comments”, poised over a blank white space that used to house a comment box and many comments. Refresh…still no comments. Grr.
Open different browser, return to site and see comments! Hooray! But wait, site tells me I must log in to post comments. Crap! Log in to site and…all comments gone again.
Is this some kind of non-hilarious programmer’s joke? I did see people had commented so apparently there is some form of magic at work here of which I’m unfamiliar. Secret e-handshake? Incantation? Sacrifice an e-chicken to the internet gods?
Needless to say, my comment was not added to the mindless rabble which had so infuriated me in the first place, sparking my need to add my nickel’s worth of free information to the mix. I suppose, in the grand scheme of things, it’s probably for the best. I really should just stick to utilizing my own blog as a means for disseminating whatever idiotic crap I feel like sharing with the interwebs.
I hope you enjoyed today’s installment of Typhany’s Rants and Ravings. And now a word from our sponsors…

Anger

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I was bullied endlessly as a kid, at school, in my neighborhood, and particularly at home. The household I grew up in was brutal, chaotic, and frightening. The smallest issue, that may or may not have been my fault (one of my parents had a rough day, they were angry at my other siblings and so were mad at “the kids” in general, etc), any little thing could at the least, earn a tongue lashing and at the worst, a beat down. But, sometimes the tongue lashings were worse than the beatings. You can only hear how worthless you are in so many ways for so long before it starts to wear on you. I was an EXTREMELY anxious child, so much so that my interactions with other children were tense and stunted. I cried easily, was very quiet, kept my head down and tried to be invisible. Each day of school, with its competitive curricular nature, brought fresh horrors, as I often easily surpassed my classmates and was the center of attention much to my extreme dissatisfaction. I never asked to be put in that position, and hated the stares of my classmates, the weird girl who rarely talked, always knew the answers when called on, and beat everyone at every BS competition put into place that was meant to give children incentive to excel, but did nothing but torment me as I never had to try to win these competitions, won them anyway, was rewarded for my lack of effort by the teachers and administration and taunted endlessly by my peers for their feelings of injustice that they never had a chance. Through most of this, outwardly I was quiet and anxious, but inside was seething with anger and jealousy. While the other children wanted my intelligence, I wanted the things that many of them had. I wanted their healthy families, nice clothes, and most of all, their easy going nature and ability to socialize with each other and make friends as if it was such a simple thing to do. I struggled to make conversation without being bound by fear and anxiety.
By my teen years much of the anxiety and self-consciousness had lessened, but the anger remained, and for many years after I harbored an unspoken hatred toward my parents for bringing me into the world when they were clearly so woefully unprepared, both financially and emotionally, to raise so many children. As a teenager when I still lived at home I played de facto parent to my brothers while my parents worked and my mom was too stressed to handle the responsibility. As I was preparing to leave for college she lectured me that it’d be best that I stay home and go to community college for a few years then maybe go on to a university in town because I wasn’t smart enough or strong enough to make it through a major university, and as I was going to the same school as my sister (her favorite child by far) I would only drag my sister down with me, and don’t even think she was going to take out a loan or help me financially in any way because she didn’t approve of or condone my decision! I knew she was trying to keep me home to help her, but she didn’t ask that. As with all things in my house then it was strongarm, bullying and manipulation tactics. Still, it hurt, and it still kind of does. I told her I had never asked her permission, never asked her for money, and was going regardless of whether she wanted me to go. I was just so angry for so long! So angry my head would hurt and I’d clench my jaw so tight my teeth ached. I just had such strong hatred and disdain toward pretty much everyone and everything and a giant chip on my shoulder.
But…over the years I thought about my parents and their upbringing. How my dad used to beat us but he’d always present this caveat that it was nothing like what his father did to him and his siblings, and he wasn’t kidding. His father was an angry drunk who took “head of household” very seriously. He ruled with an iron fist. My mom sometimes would describe the absolutely horrifying things her father did to her and her brother, and how they had to flee like criminals to escape him. I realized, my parents did the best by us that they could. No, it wasn’t good, or proper, or healthy, but they really tried not to repeat their own parents’ mistakes. As I was getting older I thought of the mistakes I’d made, and was making, and how I was reaching the age my mom was when she had her first child, and realized how young and ignorant I still felt, how much I still had to learn. As if a fog blown away by a strong gust of wind, my anger at them, and at the world, quickly and easily dissipated. I didn’t need it anymore. A much more phlegmatic me emerged. More calm and easygoing.
When I was diagnosed with MS I felt like I should be angry at SOMEthing. My temper always still quietly lurks under the surface. I can feel it there like a giant sea serpent, circling under the waters, stirring them up very deep, occasionally rearing its ugly head then dipping back beneath the calm waters like it never existed. My fits of temper are always a shocking and frightening thing to anyone who witnesses them, so unexpected, so out of my usual character. But with this, I wasn’t angry. A bit sad, maybe even felt a bit defeated, but not angry. My ever logical mind was already researching the disorder, planning my next move, trying to figure out how to proceed and what was best for each new circumstance.
It’s so unpredictable, and I often feel at the end of my rope, frustrated, saddened, aggrieved, tired…but not angry. I’m glad that, at least, I was able to outgrow this particular knee-jerk reaction. It did take a good deal of soul searching and coming to terms with my life as a child, but I was able to learn, and I hold out hope that I’ll be able to, in time, overcome my many other shortcomings and continue to grow to be a halfway stable adult.