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.

The Should Be Death of Chiropracty

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I began watching a documentary today called Doctored. The description states “An investigation into the ‘monopoly’ of the medical industrial complex and how Americans are viewed as patients.” I think to myself, this sounds interesting. I’ve seen many studies regarding how patients are viewed with regards to invisible illnesses (particularly pain) and especially the discrimination toward patients with mental health diagnoses. I have experienced some of these issues firsthand, as I’ve mentioned here in my blog many times, and it’s definitely a big problem. Doctors believe that psychology and psychiatry are simple sciences at best and they have no issue diagnosing and treating psychological issues despite the fact that they have little to no training in the matter. They view counselors as nothing more than a sympathetic ear, a shoulder to cry on, and that they have no time or patience to be that person so they’ll send them off to a counselor or therapist and the patient will have their cry out, or as in the movies they’ll suddenly have this huge cathartic breakthrough and they’re all better. Before that happens, however, they’re treated as a crazy lunatic who can’t tell the difference between pain in their body and pain in their mind, so unless they go have that breakthrough moment and can get off the psych meds (that possibly the doctor has prescribed themselves) then the person is viewed as unreliable, the doctor can’t take any of their self reports at face value, because this is probably just the crazy talking.

So, I start watching this documentary thinking, I may have something to learn here. It begins with scenes from a taped interview in the 80’s of some doctors angrily arguing with some chiropractors about the veracity of their claims to treat illness using chiropractic theory and methods. Sadly, the documentary does not go on to denounce chiropracty for the sham it is, but vilifies all those terrible, haughty doctors who denounced chiropracty for some many years. The documentary tries to say that doctors and the AMA created a smear campaign against these poor chiropractors who were trying so hard to just help people.

I’ve heard time and again that there’s no scientific evidence to support the effectiveness of chiropracty, and I’ve had my own personal negative experiences with chiropractors and chiropractic treatments that I was ready to believe it. But I realized, I’ve never actually done any research into the topic, I’ve mostly used my personal experiences to bolster my belief in this theory. So, as I’m often wont to do, I began doing some research, and amongst the slew of interesting articles that I read, I found one that was particularly interesting. It is a discussion regarding an article that was posted in a journal of chiropractic medicine by a group of chiropractors and doctors stating in no uncertain terms that there is absolutely no proof, nor veracity to the claims, that chiropractic medicine is a viable treatment option. https://www.sciencebasedmedicine.org/the-end-of-chiropractic/

So then I wonder, just as the author of the article wonders, where is the outrage? Where are the multiple exposés denouncing chiropracty for the fraud it’s always been?

This documentary is trying to say that medical professionals tried to suppress the miraculous healing that chiropracty had to offer because they wanted to monopolize the trade of healing and healthcare. In reality, doctors happily send people off the chiropractors who will do little more testing or analysis than xrays, if they’re lucky, and xrays are a terrible way to diagnose soft tissue issues such as disk swelling and annular tears. In fact, if a spinal issue were severe enough to be seen on an xray, a doctor would likely be very involved in the person’s treatment. Scoliosis can appear on an xray, and if it becomes severe enough it requires much medical intervention. But the reason that chiropractors are still so heavily used, the reason so many people are referred to them, is because compared to the cost of definitive medical testing, namely MRIs and the follow up treatment that may need to be required for such health conditions that may be diagnosed as the result, chiropractors are cheap. Insurance companies go to great lengths to insist that people attempt to cure what ails them through inexpensive (to the insurance company) chiropracty before ordering any further tests. This documentary’s opening complaint is that the doctors are trying to force out the chiropractors because they’re elitest and money hungry and can’t fathom the idea of a person being cured elsewhere before they extract their pound of flesh from them. (Well, not literally. Or maybe so, if they’re a surgeon. I dunno.) In any case, the reality is that chiropractors have a huge lobby, and have wormed their way into the healthcare community via the government and insurance companies. I won’t argue that doctors are often very elitest, with an attitude that, if you don’t have a medical degree then you shouldn’t have an opinion, and that definitely has to change, patients should, even MUST, drive their own healthcare, and doctors must let them, and help them. They could start by asking the patient to do their own research, and if patients made the effort they’d soon discover the sham that is chiropracty.

I will conclude by giving my own personal experiences with chiropractors. When my back pain first became so severe that I often found myself crawling on the floor, I finally had an angry discussion with my GP that something must be done. I was informed that I first must see a chiropractor. The chiropractor insisted that within 3 months I would be cured, that it may get worse before it gets better, but it will get better. I saw him twice a week, he applied much pressure in various ways to the area of my back that ached the most. It was excruciatingly painful, leaving me shaking and crying after each “treatment”. The chiropractor told me that I had a low pain tolerance, and that it was probably the biggest reason that I found myself unable to stand up when my back hurt. So in essence, he blamed my severe pain on my inability to tolerate severe pain. Three months went by and my back was worse, but he assured me that another 6 weeks should do the job, and he continued to quote the 6 week mark until I’d been seeing him for 9 months and my back was worse than ever before. Finally my GP was ready to refer me to a pain specialist, who immediately ordered MRIs. It turns out that my previous diagnosis of minor scoliosis (via xray) was actually much more debilitating than initially assumed. My spine had rubbed a bald spot on a disk in my lower back. Every time the chiropractor pressed that area the disk would rupture, and that’s why I was in such excruciating pain and that’s why I got worse with every visit. Still, for some reason I decided to see another chiropractor some years later. He came highly recommended by my brother, who was then a massage therapist in the chiropractor’s office. I met with the chiropractor who assured me that he could cure my scoliosis, if I met with him twice a week for 3 months. I had no intention of living through another nightmare of pain and empty promises. Both chiropractors were also involved in extremely shady practices. One of them did not accept my insurance, instead he told them that I paid exorbitant amounts of money out of pocket, then they decided how much they wanted to reimburse me for those costs and would send me a check, at which time I would sign over the checks to my chiropractor. I’m still not entirely certain whether this was legal. The second chiropractor employed massage therapists who were not yet out of school and therefore not licensed, which is 100% illegal. But it worked out great for him in that none of his therapists could rat him out for any of his shady practices because they’d never become licensed.

I have no doubt that there are honest chiropractors out there, who aren’t shady, who believe they’re helping people, who would report their client’s lack of progress immediately to their GP and insist on further testing, but in my experience, they are just as happy to continue doing what they’re doing in order to continue receiving the paycheck of twice weekly visits from someone who is never going to get better.

For further reading on discrimination perpetuated by the medical community: http://mobile.nytimes.com/2013/08/11/opinion/sunday/when-doctors-discriminate.html?referrer=

And: http://www.usatoday.com/story/news/nation/2014/06/25/stigma-of-mental-illness/9875351/

It’s been a long, long…long time…

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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)

2014–Year in Review for my first public blog!

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I’d say, overall, it wasn’t a bad year for my first public blog. Haven’t posted much in a while as much craziness abounded. My house flooded twice. I’ve been to the hospital a couple times, and otherwise my health has been precarious, especially after a very long drive to east Texas and back. I went a full month without any pain meds, thanks much to the DEA for making sure the pharmacy can’t stock enough to fill demand. Then finally, I’ve moved from the hovel I was renting that seems to think rain goes into the house, not outside. Soo…it’s been a hellish few months, but I’m hoping next year to get back on track and start posting answers to any questions you might have about MS, psychology, and life, the universe and everything. 🙂 Have a happy new year everyone!

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here's an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 350 times in 2014. If it were a cable car, it would take about 6 trips to carry that many people.

Click here to see the complete report.

To Dance is to Live

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“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

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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