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.

Guilt

My husband bought himself new work shoes yesterday, because his old ones had worn out so badly that he had to wrap gaff tape around them so he could still walk in them for the rest of the day. He said he felt guilty about buying them, because we’re so broke. He works 7 days a week for months on end, no breaks. Then he comes home and takes care of me. I’m extremely high maintenance in that I can’t do my own shopping or pick up my meds from the pharmacy, or prepare food more complicated than cereal or canned soup. I’m stuck in bed all day. I’m fatigued and I hurt all over and the cornucopia of meds I’m taking does little more than take the edge off most of my symptoms. So it’s not as bad as it could be, but still bad.
He says he feels guilty about buying himself something that he actually needs for work.
I’m finding that each new day and each new diagnosis he becomes disillusioned, and even resentful. We got married less than a year before I was diagnosed with MS, and even though I had no idea it was going to happen, I can’t help but feel like I roped him into marriage due to a pregnancy, only in my case, I became the baby. I need constant help, constant attention, and he never gets a break. WE never get a break.
But it doesn’t always feel like a “we” or “us” anymore. It’s not as if I don’t suffer all day long, the only problem is that I don’t get paid for my suffering and he does. He works too much, sleeps too little, and it seems he no longer cares about things like cooking or cleaning, he just comes home from work with some bags of fast food then plops down next to me and we watch Tv. I try to engage him in conversation, he’s too busy chatting with people or reading articles on his phone. He doesn’t listen to me, doesn’t respond, and sometimes this leads to errors on his part because he didn’t listen to my instructions. But, that’s my fault too. Somehow lately everything is my fault.
Sometimes I think that everything is okay, that things will get better when he can get a raise or I can get social security or we move to someplace with better weather, because the heat of the desert just kills me, and I know he’s tired of long commutes in the hot sun. Other times I think that we’ll keep going on the way we are and we’ll both be so angry and resentful and overcome by grief and guilt, and if I suggested we split he’d happily cut and run. But you know, I don’t believe that he’d ever leave me. He’s an honorable man and he knows I have no place to go and no way to take care of myself on my own. But, he would hate it. He hates it now, he just won’t tell me, and I don’t even know how to talk to him anymore.
He really doesn’t know what life is like for me now and it’s almost as if he doesn’t care, or that he thinks he understands me but he just doesn’t. He really doesn’t. How do you describe colors to a blind person? How do you explain to someone who is not chronically ill what it feels like each day, and especially if they don’t care enough to listen?

To Dance is to Live

“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

Grief and Chronic Illness

Loss is a terrible thing. In life, we will have moments of loss that are often viewed as normal, many sometimes even so unavoidable they are expected and inevitable, but they still shake us so to our core we’re sometimes little able to function afterward. In our culture we don’t prepare for losses, particularly deaths, but wait for them to come, take us by surprise and knock the wind out of us.
Grief creates a very tangible, visceral pain. It literally hurts in our bodies. A study done recently showed that pain medication eases the psychological pain of social rejection.* Social rejection causes one to grieve immensely, and on a long-term, or chronic, scale. It seems that our grief for painful occurrences in life are just as painfully tangible as an upset stomach, a headache, and the malaise that many people feel while grieving.
There are two types of grief experienced in life. The acute, an occurrence that prevails with suddenness and quickly changes the topography of our lives, such as the loss of a job, the ending of a relationship, the death of a beloved pet, the sudden death of a beloved person, etc. These things occur swiftly, change our lives, but the primary event is over when it’s over and given time, we may adjust to our new lives with this change in it. We grieve strongly and terribly, mourn what or who we’ve lost, then we pick up the pieces and move on.
The second type of grief is chronic grief, and occurs when our losses are continual issues in our lives, when the things that we grieve are long-term, and ever changing, such as a chronic illness, the death of a loved one for which we cannot (or will not let ourselves) heal, chronic illness of a loved one, or news of the impending death of a loved one or beloved pet for which there is no definite time constraint (maybe a month, a year, or 10 years, we don’t know, but they’ve definitely got a terminal illness such as cancer that is incurable and will eventually kill them). Chronic grief is a terrible thing. Acute grief is expected, and accepted. One is supposed to hurt when they’ve suffered a loss. But people have difficulty identifying with the long-term pain associated with the chronic, of any sort. Chronic physical pain is beyond comprehension for many people. How can any person hurt all day every day? It must be something made up, exaggerated, stated excessively, because such a life cannot be feasible. Chronic psychological pain is just as difficult to grasp. How does one continually not deal with an issue or problem? How does one continue to hurt?
Truly, people can only suffer so much. Chronic pain of any sort tends to numb us. People with chronic physical pain often have very high pain tolerances. But also, they can have very low pain tolerances, as if their capacity for experiencing pain has been used up, and one more thing added to the list is enough to bring them to tears. Terrible psychological pain can cause the same effects. Maybe a person is just holding it together dealing with their various chronic and/or acute griefs, and that one more thing, like dropping a pizza cooked fresh out of the oven, and they burst into tears like their whole world has come unraveled.
Many of us with chronic illnesses deal with both chronic physical pain and chronic grief. We mourn the many things we’ve lost in our lives due to the illnesses that we struggle with every day. Imagine waking up one day and learning that not only are you going to suffer every day for the rest of your life, but you’re slowly going to lose your career, independence, self-sufficiency, hobbies, friends, mobility, the respect of those around you, perhaps your memory, and each day will be more difficult, more of a struggle to hold onto those few things you still have, and each day it’s possible that you’ll wake to find that you’ve lost something else, and you still hurt, everything still hurts.
I’m tired of being treated like a child when I become frustrated for the things I’ve lost. I’m tired of being told that it’s simply depression that causing me to grieve the things I’ve lost when it’s FAR more complicated than that. I’m tired of being looked at with pity, as if my mind is gone, when it’s really not me who has the problem understanding the situation. I’m tired of trying to justify my emotions to others.
Every person has a right, and even a need, to grieve their losses. If or when that grief becomes out of proportion to the loss there may be need for intervention. I had worked with people who continued to mourn the loss of a child so strongly that it was a disruptive force in every aspect of their lives 20 years after the fact. This is no longer healthy grieving, but obsession. I understand full well how grief can be destructive rather than palliative, but when each day presents a fresh wound, are we not entitled to our time to let it heal? 

* http://www.sciencedaily.com/releases/2009/12/091222154742.htm

Multiple Sclerosis: A Quick Summary of Symptomology

Multiple Sclerosis is an autoimmune disorder that causes the body to attack myelin, which protects nerve fibers in the central nervous system, which causes scarring known as lesions in the brain and spine. As the myelin deteriorates it is akin to having wiring without insulation. Signals get crossed and confused, causing all manner of incorrect information to be transmitted to the rest of the body which manifests in many different ways. It can cause neuralgia (extreme pain in the nerve pathways), paresthesia (feelings of tingling, skin crawling, painful stinging like multiple bug bites, or pins and needles like a limb has fallen asleep), allodynia (pain or discomfort to touch that is non-noxious or not harmful such as clothing rubbing against the skin), muscle spasms, muscle spasticity (hard, painful contractions of the muscles that will not relax or release), as well as other debilitating symptoms such as optic neuritis (swelling of the optic nerves which can be extremely painful, and can cause vision changes such as double vision, cloudy vision, light sensitivity, color changes, and even temporary or permanent blindness), and temporary or permanent loss of motor control or muscle function anywhere in the body. This includes the heart and vascular system, and diaphragm, lungs and respiratory system. In addition, MS flares ups, or “exacerbations” cause inflammation in the brain which, over time, lead to structural brain changes, the most common of which is shrinkage. The brain literally shrinks, and many of the parts of the brain that are responsible for regulating such actions as sleep, appetite and mood no longer function at full capacity, if at all. Many people with MS suffer from mood disorders and sleep disorders that are not easily treated by traditional medications.
The most common symptoms of MS are fatigue (and this is not just how you feel tired after working a 10 hour shift, it’s being so tired even after sleeping 10 hours that you can barely stay awake, barely get out of bed to get food or use the bathroom, and no matter how much you nap throughout the day the fatigue persists), loss of balance and vertigo (which also tends to cause nausea and a lot of stumbling and falling down), and what is known as “brain fog” or “cog fog”, which is a cognitive disruption, an inability to think clearly and is often accompanied by confusion, dissociation, slow reaction times (both physically and mentally) and disorientation. Often the combination of these common symptoms, the fatigue, loss of balance and brain fog, tend to cause one to appear drunk, which is very frustrating for many people with MS. People are also often accused of laziness due to their fatigue, are treated as if they’re mentally challenged, and many physicians will insist that these symptoms, especially changes in mood, fatigue and sleep disturbance, have a psychological root cause, rather than a physical one, and will continue to refer them back to a psych prescriber. These issues are both barriers to treatment, and barriers to understanding by the person’s friends and family.
What must be understood is that every person’s MS manifests differently and at different rates, and there a 4 types of MS, some types generally more debilitating than others.
So if you’ve ever seen or heard of someone with MS who is perhaps very high functioning, then you encounter another person with MS who is less so, please do not compare them, or tell the one person that the other person you know can still work or exercise or go out dancing or etc and that if they only TRIED they’d feel better, because one person may be able to do these things while another cannot.
Educate yourself. MS is sadly a very common, and very debilitating disease, but it’s also very poorly understood. Learn about each new person’s struggles and support them in whatever way help THEM, not by comparing them to others, but by learning what the individual can and cannot do, and assisting them in whatever way might benefit their situation the most, even if all you’re doing is providing a sympathetic ear.
None of us asked for this disease, and if given the choice, we all would trade to get back our old lives in a heartbeat. We’re not lazy, we’re not moping around, we’re not hamming it up, we’re sick. Imagine how you would feel if you had lesions in your brain that caused even one of these symptoms to occur all day every day, and decide what your response to that situation might be before passing judgement on anyone else. All we’re asking is a little understanding and empathy.

Anger

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.

Dream a little dream…

The music moves all around me and I with it, my body in perfect harmony with sound, no thought in my head but the sheer joy of it. The feel of my muscles as they move and flex, my arms long and graceful extending out to beautiful floreos, I glide across the floor, spinning, colorful silk veils enveloping my body then flowing outward as they’re deftly manipulated, as much an extension of my body as a limb. I feel the connectedness of all things, the many instruments becoming one sound, one sound becoming a song, my movements melding with sound to create nothing short of a work of art that shouts out to the world “I’m alive! I’m free!”, and I can’t help but smile for the simple pleasure of dancing. Oh it’s been so long since I’ve danced! Then I wonder, why is that? My movements falter. Why haven’t I done the thing I love to do most in life for so very long? I stop, puzzled. Where am I, and why do I hurt so badly?
That’s when I woke up this morning, and cried. The reality is, I hurt all over my body every day. I have no balance anymore. My muscles are weak and spastic. Once graceful and strong, I now have difficulty doing simple physical tasks, or walking across an open room without fear of falling down. I’ll likely never dance again. At least, not like I used to. I’m tired of people telling me I can dance “in spirit” or “in my head”. I’ve lost a major part of my life, myself, my identify, my greatest joy in life, and memories of that thing will not replace it. I could also sit around all day fantasizing about the masters I’ll never earn, the career I’ve lost, the independence I no longer have, the days when I didn’t wake throughout the night in excruciating pain, but none of those fantasies will change the fact that this is my new normal. This is the hand nature has dealt me and I have to make the best of it.

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.

Testes, testes, 1…2…3?!

This is a test. This is only a test. Life is only a test. It doesn’t really matter if you pass or fail, we all end up the same in the end. However, your journey can be wondrous or dull, difficult or smooth. You can choose to make the most of what you’re given in life, but as some of us can attest, we weren’t given much to begin with.
My life was never easy growing up, but I always imagined I’d use my remarkable brain to turn things around for myself. I certainly never imagined my big, beautiful brain would be stricken with lesions and my life would come to a grinding halt at age 33.
But…there’s plenty of time to get into that. This is only a test. You may resume your regularly scheduled activities.