What Dylan Knew

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

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.

It’s been a long, long…long time…

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)

Chrysalis

Living with MS, or any chronic illness, is a terrible thing. Yeah, that seems like it should be a given, but you just don’t realize how much changes, in your life, your outlook, your interactions with others, even down to who you are. It’s like undergoing this radical transformation, and they use a butterfly to signify MS, as if we’ve cracked the chrysalis and shone forth, a beautiful new being, when really, to me, it feels like I crawled into a shell and emerged a dowdy caterpillar. Once vibrant, once glowing, beautiful, able to dance on the wind, now I can only crawl.
I used to be strong, independent, and while I know I’ve struggled with this disease for much longer than I’ve been diagnosed with it and I can look back at my life and see its dirty fingerprints smudged across many of my failed accomplishments, I can still look back to the not so distant past and see just how much more full of life I was then! How I’ve become practically a stranger to myself and all those around me in such a very short time.
I try not to hide my weakness and emotion from my friends and loved ones anymore. I used to always suffer in silence and everyone thought I was okay even times when I really, really wasn’t. It’s difficult to open up, it leaves you vulnerable. The worst part is when you try to explain to someone how badly things are going and they just don’t understand, or they think you’re making excuses or blowing them off. And I don’t blame people for thinking that way about me now. They’ve gotten so used to me always bearing the lode and just keep on pushing through like nothing can stop me, but I just don’t have the emotional, or even physical, fortitude to do so anymore. I do blame myself to some extent, for everything. For not listening to my body when it needed a break, when it was telling me that there was something dreadfully wrong and I just didn’t want to hear it, and for not giving others an opportunity to support me when I needed it and now they all either think that I’m strong enough to deal or that my cries of weakness are either insincere or so out of character that I’m too changed for them to understand me anymore. I’m not the person I once was. I have to admit my faults, concede that I need assistance and surrender to the things that are now out of my control.
I feel like I should want to cry to the universe for having cursed me with such ill fate, and ill health. More than just MS, my body is coming apart at the seams and there’s nothing I can do to stop it. I’ve lived with chronic pain so long I don’t even remember what it feels like to not hurt, but any time I think about feeling angry, I just feel sad. I don’t have energy to waste on being angry. I have an extremely finite amount of energy to work with each day and I just can’t be bothered to expend it on misplaced rage.
I suppose in some ways I still do suffer in silence. While I try to make it known to others how I’m feeling, what’s happening with me, what it’s like to live my life, there’s really no way to make it clear, no way to make it understood and truly felt! I know there are people who love me, care about me, sympathize and even try to empathize, but they don’t understand. They can’t. Because I can’t explain it with words.
The best way I can describe it is that I live every day with a pall over my soul. No longer able to do any of the things I once loved or that brought me joy, not knowing who this new me is or how I fit into this new life where I’m no longer needed, an anchor to anyone who wishes to take me on, I spend each moment trying to ignore the physical pain, the emotional torture of being trapped in this body, and try very hard not to think of the future.