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. 😉

Grace

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I’ve known for quite a while now that the worst thing about having MS and various other illnesses, it’s not the pain, not the losing of mobility, not the falling down, the slurred words, the fatigue, lack of job and income or the inability to care for myself. No, it’s the losing of my memory. That’s definitely the worst thing. I tried explaining to someone today what it’s like. Supposing someone broke into your house and took one thing. You probably wouldn’t notice, especially if it was something small like a book or DVD, and the only way you could notice that it was gone is if you went looking for that thing, and you might look other places for it because you know you own it but no matter where you look it’s just gone. Now imagine that things start going missing a few at a time, and you don’t really notice at first but then you start realizing that many things that you’ve wanted to retrieve just hadn’t been there lately and you wonder what’s going on, but there’s no explanation for it. Eventually you realize that your shelves and closets and drawers and cupboards are noticeably more bare than they were, that so many things have gone missing now that you can’t even keep track of what you’ve lost. You know it’s all missing, you can see the bare shelves, but there’s no easy way to take stock or inventory of what’s gone. Sometimes maybe you decide to retrieve a book or DVD, but maybe you only recognize it by sight so you rummage through all of your belongings, and best case scenario is that you find it right away, worst case you may search and search and tear your house apart but you just can’t find it anywhere, leaving you frustrated and exhausted, and angry and confused because where the hell is everything?! Now, add another layer, you’ve got a friend over and you decide you want to show them something, but it’s very difficult to describe, so you tell them excitedly that it’s around here somewhere and go on your usual search around the house, telling them you’ll find it, you know it’s there, you’ll definitely find the damn thing, and you start to get frustrated because you JUST saw it so you know it’s there, so your friend awkwardly tries searching for it with you, but since you can’t describe it they’re not sure what they’re looking for and all they do is get in the way, and you both become embarrassed by the whole situation and you finally just decide to drop it but the awkward embarrassment stays for a bit, because your friend reeally doesn’t understand what you’ve been going through as all of your belongings are somehow slipping away a bit at a time.

So now, imagine that your “house” and “belongings” in this situation are your mind and all the memories and contents therein. Imagine having a conversation with someone and visualizing something with a very self explanatory name, like toaster oven or weedeater, and despite the fact that you can see that object clearly and know exactly what it does, you can’t seem to find the name, and so any words associated with the description are also shrouded. If you could describe it in the simplest terms, “makes toast, small oven”, then you’ve found your object’s name or an approximation like “toast oven”. But no, you can’t find either of those words, you frantically try to think of words to describe this thing but when you’re on the spot with a faulty memory retrieval system, it’s that much more difficult to accomplish, and all the while your friend tries to help you by throwing out words, but all that does is confuse you. And it’s not just names of items, it’s names of bands, authors, books, places, names of people you know and people you don’t know but should know their damn names, like your best friend growing up, your favorite actor or musician, or even the friggin president. But it’s not just names, it’s life events, things you’ve done, things you’ve experienced, it’s all slipping away. Some of it may just be a bit hazy, but some of it is just GONE. 

I can see all of these things happen to me. I used to have an impeccable memory. I have memories back to at least age 3 and until recently, there were very few gaps. I used to remember almost anything I’ve ever read, anything I’ve researched, anything that was told to me. The only things I was ever very hazy about was math, which has never been my strong suit, and names of people I’ve met but don’t know well. Otherwise I was always the person people came to when they needed information about all manner of trivia, life events, names of actors, matching a song to a band, and in the work setting I was the go-to person for pretty much everything pertaining to our particular work setting. Nowadays, it’s rare to have a conversation without faltering at some point or another because I can’t think of the proper word for something, the name of a person, place or thing, an adjective, an event. Sometimes it’s so difficult to retrieve words that I stammer and stutter just trying to formulate my thoughts into a sentence.

I’ve always prided myself of being able to learn from my experience and knowledge, to apply that information to my life and my actions and use my wealth of knowledge to shape me into a better person. What are we but the sum total of our experiences and knowledge, and how we choose to reflect on those things? As my memory becomes more faulty, I feel as if bits and pieces of me are slowly leaking away, and I can’t help but wonder what will be left. Pain and anger? Frustration? Confusion? Will I be the old (or maybe not so old) lady in the care home who fights her caregivers every step of the way because deep down inside I know that I should be able to do this on my own, because I know that I used to be independent, smart and capable, and now that’s gone and it’s killing me inside.

As these things are happening, as my body deteriorates, my world crumbles all around me and each day is filled with pain, some days I can feel myself screaming inside, like a person trapped, a person lost. Outwardly, and whenever possible inwardly, I try to weather these changes with grace. Even on days when I just want to scream and throw things about the room, I maintain my composure. I’m not trying to stifle my feelings, I process them as they come, but I feel that if I can’t or won’t handle my lot in life gracefully, I’ll lose myself, and really will be nothing but pain and anger, resentment and confusion. I don’t want that for myself and my loved ones.

I’d always told my clients in my counseling days, there are very few things that you can control in your life. You can control what you say and do, and you can control your reactions to things that happen to you. That’s it. So decide who you want to be and control your actions and reactions accordingly. I’m going to follow my own advice for a change. I have to try. I’m 36 years old, and I’m losing my memory, my mobility and my sight, and I do not want these things to change who I am as a person, I must try to take control of those things that I can control for as long as I’m able, because those are my choices. I can deal with this situation to the best of my ability, or I can let my emotions drive my actions, in which case I will likely lose myself completely.