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. 😉

A Ghost of Regret

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I’m not usually one to harbor regrets. Not for much of anything really. As far as I’m concerned, the choices that we make are the best possible choice we could have made at that point in our lives, and looking back after all is said and done and saying, “I should’ve done things differently, I should’ve known better…”, or even worse, “I shouldn’t have done what I did…”, will only make us come untethered. As they say, hindsight is always 20/20, and no matter how clear things look now from our presently higher perch, at the time the decision obviously wasn’t so clear. I learned this a long time ago, and rarely beat myself up over things that I should or should not have done.
However, there are a very few things in my life that still haunt me, and occasionally I find myself ruminating on the what ifs, and am especially haunted by the knowledge that losing someone or something very important to us is the single most pointed reminder that there really are no do overs in life. Once they are gone, they’re gone forever, and forever is a very long time to wish you had a second chance. On one occasion, as I was feeling a bit melancholy over such things, I wrote the following bit of short prose in late June of 2013, then promptly forgot about it, until now.

* * *
A funny thing happens during that time that you’ve been awake long enough that you’re not sure whether to continue to call it late or begin calling it early. The ghosts become real. In the daylight they are nothing but unpleasant sickness in the back of your mind, a stagnant mist of sadness and regret that is easily overlooked, seen through like a light fog on a bright summer morning. Vaporous, soft, unclear. But as night moves on to morning they drag themselves from the dark corners where you’ve secreted them away, full born, blood still dripping and waiting to sink fang or claw into the soft underbelly of your tired mind.
The ghosts become REAL. Haunting your every thought and sigh. Sickened to the point of pathetic sobs you hold them close, loving them as much as you fear them.
They are all that is left, those bittersweet memories, so much happiness and remorse that the two are inextricable. The pain cuts deep, and as dichotomous as ever, also brings a twisted pleasure. The severity of the pain reminds you of how great the loss. Without the pain, the loss somehow seems meaningless.
As morning arrives the ghosts fade, the tears dry, and a bizarre sense of wonderment sets in. The night feels as a twisted version of reality, wicked in its ability to warp the mind and squeeze the soul to near bursting. Ah, my heart. My love. How I still miss you after all these years.
And the song lyric echoes in my head: Please don’t reproach me for how empty my life has become…

Socially Acceptable Discrimination

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I hate the term “privilege”. I’ve seen this term pop up so frequently recently, and I fully understand what it’s supposed to convey, but to me it seems to carry a very negative connotation, and apparently I’m not the only one. An article was written recently on Everyday Feminism to help people not guilt themselves about their own privilege. Apparently people are wandering the country with privilege guilt, feeling bad for being born into a real or perceived higher status in life. Within this article is a particularly sickening quote: “When spaces are open to those striving to be allies (keep in mind that not all spaces will or should welcome people of privilege), show up.” So basically, people of “privilege” are expected to be discriminated against, and somehow that’s okay. From the same website, another article tells us that while it’s okay to want to remain in touch with our European heritage, and that not all white people are bad, whiteness itself, in fact, inherently is. I find these statements amusing and unsettling. Much of my “European heritage” is Jewish. Does that absolve me of this privilege guilt that’s supposed to weigh heavy on my heart? Or am I supposed to do as these articles state and get in touch with my roots in a positive manner, understand my privileged place in society and use that to enact change? I have quite a diverse mix of ancestry, it’d take quite a lot of time to research all of that, keeping it all positive of course, reminding myself at every turn that whiteness is bad! Whiteness is bad! Then use my new found knowledge to help others who are less privileged than I? It just amazes me that a site that prides itself on being so open, inclusive, and anti-discriminatory would so blatantly socket so many people into a category of which they have no control, and is so broad stroked that you couldn’t possibly know for a fact who fits this category without an intimate look into their personal upbringing and experiences.
The idea of privilege is just too subjective, and it seems like it would be easy for some to make assumptions about another’s privilege without knowing enough about their background that I don’t feel comfortable applying the term to any person, creed, group, what have you, as we’re all individuals with vastly different backgrounds and coming from different places in life. When everyone is screaming that equality is so essential, why single out whole groups of people based on their gender, religion, sexual orientation and race and tell them that they must ADMIT to, even SUBMIT to, the fact that they’re perceived by other groups to have been dealt a better hand in life? It is discrimination come full circle, and I’ve never been willing or able to abide discrimination in any form.
As one with “privilege”, (being white apparently gives me privilege…but being a woman does not, and I suppose neither does being disabled, so do those two things cancel out my one privilege point?), I grew up dirt poor in an equally poor neighborhood being one of the few white children at a primarily Hispanic school, and had the misfortune of being painfully shy, nerdy and always at the top of my class. I got beat up by other kids on a regular basis and they expressed so much rage at my very existence. They accused me of incurring favor with the teachers, not receiving my high marks for actually doing well in class, but solely because I was white. As they stood around taunting me and kicking me with their high dollar, stylish LA Gear shoes, and I lay curled in a ball crying, wearing my sister’s too large hand-me-downs filled with holes that I’d poorly patched myself, I just didn’t understand. I was so completely colorblind as a child, in so many ways, and their rage at something about me that seemed so without grounds or merit was puzzling to say the least. I obviously knew that there was historical racial tension, but to my childhood mind that was a thing of the past. I didn’t have any comprehension of racial tensions, stereotypes, or the anger that these children presented to me. As far as I was concerned, we were all just kids. I wondered where these kids got the idea that my skin color gave me an advantage. As far as I knew, it was more likely my huge forehead, or rather the giant frontal lobe encased within, that gave me what was basically my only advantage at school. I certainly wasn’t any good at sports or fitting in and making friends. It’s tough to make friends with people who hate you simply because your skin color doesn’t match theirs.
When I was 13 I was outed by one of my closest friends at the time, because I confided in her that I felt more attraction to women sometimes than men, and even though at that point, as I told her, I wasn’t even sure what I was or who I was or what I liked, she took it upon herself to tell our entire circle of friends that I was gay. I didn’t realize the waves this would make with my classmates. I expected they’d be more understanding, and had no idea that being gay or bi would cause such a scandal. I was outright crucified for something that I didn’t even know for sure yet might grow to be a permanent part of my life. I was taught by my mother that being gay wasn’t a bad thing, that people are born that way, just as people are born hetero, and in my mind at that time I honestly thought that confiding in my friend was not a big deal. After all, being gay is normal, why would it be a bit of juicy gossip?
I got married very young, while still in college, because I thought that’s what people do, but maintained an open relationship because being bi and monogamous with a man was never going to work for me. Because of my experiences, I applied to volunteer at the LGBT center near my college to work with teens, remembering how painful and scary my surprise outing was, and how confused I had been with regards to my sexuality. I was none too politely declined because they stated that, being a married woman, I’d have little experience with “alternative lifestyles”. I was beyond hurt by their remarks. I explained my history to them, but apparently I was still too mainstream to be of any use to needy teens who may benefit from someone who might understand them. So it seems that I do both have privilege and don’t, and those people who should be most open minded about the state of my privilege or lack thereof are the first people willing to judge me based more on what they perceive that I have, rather than on the struggles I’ve dealt with that make me such an oddball and so likely to be cast out by “privileged” society members.
It’s just too easy for someone to make assumptions about another person’s place in society. We’re such complicated creatures. Some things may seem inarguable, that yes men get paid more in the workforce overall, and that yes in general western culture is heteronormative and cisgendered, but that doesn’t necessarily mean that each and every person from that pool of people does, or is able, to reap the benefits of these skewed standards, and it doesn’t mean that people outside of those circles cannot find their own niches in which they’re able to flourish and compete on an even footing, and it certainly doesn’t mean that the “privileged” members of society are so high up on their ivory towers that they can’t possibly grasp or engage in the struggles of others. Pain is universal, and empathy is a natural reaction for most people.
The social services industry is dominated by female workers, even to the highest levels of management. Payscales at many of the organizations where I worked were preset, if you got the job you got paid for that job, same starting salaries for each position across the board, and if any of us were ever lucky enough to get a raise, which would occurred if the budget allowed and we weren’t on a corrective action plan at the time of our annual assessment, those were all scheduled in advance and given to each of us in the exact same increments, regardless of race, religion, sexual orientation, facial piercings and etc. If I was still able to work, I could still be climbing that career ladder if I so desired. One thing I absolutely loved about working there is that no one was ever discriminated against for their tattoos or piercings, and I worked alongside many members of the LGBT community at all levels, from entry level to upper management. I was treated with just as much respect as the next person, regardless of my mods or sexual identity. So despite people’s insistence that one may be given a better footing as a white male, I’ve worked in at least one industry where this rule of thumb doesn’t apply.
I’m certainly not saying the world is a perfect place, I’m just saying that when we stress that we should make efforts to be mindful of our language and our approach to how we treat people of different backgrounds and affiliations, it’s important to be mindful of ALL of it, and the idea of being a person of privilege implies across the board that that person has something more or better than the rest of us, and from my standpoint, I find that hurtful both as one who would be deemed with privilege, and without.
By accusing someone of having privilege they’re being set aside as different, as unable to understand another’s struggle, as being above any possible personal struggle or status that may make their lives more difficult simply by being who they are. Isn’t that exactly what making them “privileged” society members does to them? It sets them aside as a group to be hated, despised, avoided, and on whom we can place all manner of blame. Isn’t that the exact kind of discrimination we’re trying to avoid?
Despite all my hard work in school I had very few opportunities for scholarships or grants, those being reserved for, not just underprivileged kids, but underprivileged MINORITY kids. I’ve had difficulty finding jobs due to being monolingual. I even had to fight tooth and nail to get promotions in some workplaces for which I was more than qualified simply because I was deemed too young at the time. Within each group, and each subgroup, there will always be barriers, there will always be those who incur favor, there will always be, in one manner or another, inequality, because humans are, after all, only human. Flawed creatures. Prone to creating and staying within niches and protecting their own. Do we really have to create another group to be angry with? Do we really have to build more barriers?
Perhaps those people who are so keen on breaking down preexisting barriers should make more efforts to not build more, to include those who are different as they would like to be included, rather than make as much effort as possible to make them feel guilt, or at least feel keenly aware, of things beyond their control, particularly who they are and where they came from. They would never stand for being made to feel guilt about such things in themselves, why go to such lengths to put that burden on others?