Friday, December 27, 2013

Survival Mechanisms, Multiple Sclerosis and INTO THE WILD

We watched INTO THE WILD last night (Sean Penn directed this movie based on the controversial novel by Jon Krakauer). It was the second time for me. I watched it last spring while horizontal on the couch sucking down several strong coffees in a row to fight off the spinal tap headache that followed my fluoroscopy the previous Monday. (PS, the caffeine worked.)

(Seriously, it seems like everything in my life post-DX has an MS tag attached to it! I try not to let it define me, but there it is. And that's what this post is going to be about, in a weird and roundabout way.)



Okay, the hero-fool of the story, Chris McCandless, a real guy who endured most (if not all) of the events recounted in the movie, stepped out into the world as a tramp ("Alexander Supertramp," to be precise) ostensibly to cast off material illusion, injustice and conformity to aspire to life as a modern-day Thoreau.

(I say hero-fool because the lines are clearly drawn in the sand between those who thought he was either. Me, I think he was unapologetically human and broken and if you find it easy to boil his story down to either the hero or the fool, you are missing the point.)

McCandless ended up in a bus in the outlands of Alaska after a vagabond's trip across the United States. Spoiler alert! Yes, he died. He died, in many ways, a stupid death.

Let's be real. This was not the story of an idealistic 20th century Kerouac. Did anyone not listen to McCandless's sister's voiceover about how messed up their family was? Violence, deep family secrets, betrayals, passive aggression, alcoholism, the twin oppressions of social expectation and privilege. McCandless's sister Carine still maintains the story that they were one effed-up sinking ship of a family.

Herein lies the true, if more inescapably difficult to manifest, root of all of McCandless's problems. He mostly hit the road to escape the realities of his grossly dysfunctional family and the larger ingrained demands of our society to live the "good life" that did not match what he'd learned while studying political injustice around the world: the need to conform, to go to college, to make money, to conspicuously consume at the cost of others, etc.

This understory is often lost on those who would criticize director Sean Penn for romanticizing McCandless as a modern-day John Muir. Or lost on those who think the whole story was about survival. Like Survivor is all about physical survival, right? Wrong.

(Too bad McCandless didn't live long enough to see a few episodes of Survivor, he might have caught on to the whole "social game" aspect that has led so many otherwise unfit players to grab the brass ring at the end.)

But I digress.

What people fail to note while watching this movie are all the signs along the way that point to McCandless's biggest blind spot (which I just hinted at).

It wasn't that he didn't bring all the tools he needed. He had maps, he had money, he had a fishing pole which he never used and a lighter and even books on edible wild plants. And he did, in fact, live out in the wild for almost 200 days, which I think most Americans would not be able to do even if they had a full arsenal of survivalist tools available to them.

(Sorry, America, but y'all are soft and stupid and lacking in basic wisdom even about your own body, but that's another blog post entirely.)

His blind spot was revealed by himself in ink he inscribed on a page in Tolstoy's Family Happiness at the end of the movie:

"Happiness only real when shared." (sic)


Ugh, happiness. Now there's a loaded word. Right up there with love and beauty.

Happiness. The ultimate American dream, right? But what does that mean, anyway? I don't think it was happiness itself, or even family happiness, that McCandless desired (whatever these things are). I think McCandless wanted to unravel the lies that had been woven into his personal mythology by parents more interested in rewriting reality to serve a greater social expectation they'd become slaves to (it's a generational problem.... remember the term, "Mistakes were made?").

Of course he and his sister Carine were casualties of that appalling cover up. McCandless just wanted to write his own story instead. And sometimes you have to go back, way back, to the very beginning, and start over, and be as far away from the Big Lie of Who You Are as told by Somebody Else in order to do that.

Oh, and there was love by the bucketload in this movie. Real love. From his sister. His roadie friends. Ronald Hanz' love for McCandless spilled out of his eyes so fiercely at the end I couldn't help but bawl along with him. And McCandless loved people back, even perfect strangers like the old fella who needed a quarter for a pay phone so he could patch up a tiff with his loved one.

And there was beauty in the broad American landscape McCandless traversed, from the gorgeous southwestern hoodoo regions to the relentless Colorado River, South Dakota's fertile wheat fields, the sparkling Sea of Cortez and the epic northern Californian coastline. (Though Sean Penn's version of Alaska apparently doesn't mirror McCandless's reality of bogs and mosquitoes and zilcho scenics).

Even poets will tell you that happiness and love and beauty are throwaway words in the 21st century. These idyllic words have grown so broad in their usage that they no longer hold real meaning in a world where linguistic nuance is lost and we are left to rely on icons and emoticons just to get through the day.

The passage was something McCandless wrote about three weeks before he died. And in fact, shortly after he read a specific paragraph in Family Happiness, which extolled the virtues of surrounding oneself with people to achieve happiness (why he didn't see this before, I can't say... maybe he hadn't read this book yet), McCandless packed up and tried to leave. If there was any brilliance to be found in that tragically dysfunctional genius of his, it was that he finally grasped that living alone in the wild was a huge mistake and probably the quickest path to his own death.

The drive to survive is nothing if not irrefutable when it kicks in. Too bad the river wouldn't let him cross back over to the real world.


How it took so long for his drive to survive to kick in, we'll never know. I suspect it has to do with the constant emotional abuse from his father that taught him to believe that he didn't deserve love. Which did not make McCandless suicidal, by the way, it just meant he did not learn the truth to his survival soon enough to change his outcome. I also think he was physiologically incapable of good sense at this point, in early starvation, perhaps.

Or maybe my theory here holds true as well, that like the rest of us, he's soft and stupid while being overeducated. It happens all the time. There's book smart and then there's street smart, right? He'd been reading these books over and over for the whole of his trip. He'd probably read them more than once even prior to tripping after graduation; they were probably assigned reading in some social justice class he'd taken. Books that took on the weight of the Bible in his life.

Ponder that for a minute.

Books McCandless read along his sojourn included London's The Call of the
, Thoreau's Walden, Pasternak's Doctor Zhivago, L'Amour's Education
of a Wandering Man
, Byron's "There is a Pleasure in the Pathless Woods"
and, most notably and ironically, Tolstoy's Family Happiness.

In fact, the college education he seemed to despise so much was probably the greatest fuel behind his decision to hit the road. O! the irony of that.

Clearly his book learnin' overtook his own street savvy ability to observe people he encountered in real life. The whole world shared something with him. And in doing so, they were giving him bits of happiness. And love. And beauty. From truckers who gave him rides, to strangers giving him hot dogs from their grills, to farmers who hired him, to hippies who treated him like their own son, to a 16-year-old girl who offered her body to him (another example of the primal drive to survive), to an elderly man who asked to adopt him (and who also taught McCandless how to fish and gave him a fishing pole.)

And what about all the other messages he failed to process, like being told by his fast-food boss that he needed to wear socks to work (because it's a rule, which he couldn't abide) while he worked along a sign that said "It is okay to waste fries." He compromised his values all along the path to his own death, justifying it all by saying he was going to live above and beyond the cruelty and depravity of societal norms.

For me, the survival instinct is less about starting over and more about making the most of what I already have. Mostly this gives me gigantic advantages over our hero-fool McCandless. I have great friends, adequate insurance, supportive family, an awesome health care team, a functional MS community. I have lived enough years to understand that I am in charge of my own happiness. I see the value of the gray area between extremes. But that's just me.

What did he have? A sister who was equally a bastard child and powerless to help him. A bunch of money to put toward a life he didn't want. A falsified personal history and identity courtesy his father. A bunch of books from a different time and space to advise him in ways that weren't practical, but esoteric--great for philosophy discussion but not so much for getting by. No sense that maybe he could rewrite his story without abandoning the real world for a fantasy of solitude. The only social constructs he could relate to were subcultures also left to teeter along the fringe. He was just as young and stupid as his parents were when they graduated from college.


Here's a guy embarking on a magical mystery tour... he's educated himself on philosophies about the imbalances in the world... he even trains himself with calisthenics, keeps recorded documents, prepares (however incompletely) for his big intentional lurch into the unknown. It's a spiritual journey, and I'll give him points for that. This effort elevates him above the vast majority of Americans who can't be bothered to entertain the notion of an interior life.

Then he dies because, for all that book learning, all that spiritual seeking, he cannot fend off the very real impact of starvation and self-imposed isolation on his physical reality. Hero, or fool?

I can kinda relate, and kinda NOT relate.

MS is, itself, a magical mystery tour... you don't know what you are in for, except for what you have experienced in the past, much of which prior to diagnosis has escaped definition or any kind of connection to your future. What do I mean by that? I mean that all that fatigue I experienced in my early 20s, the sudden shingles and weird health issues in 2001-2002, a repeat case of mononucleosis, a prior misdiagnosis of narcolepsy... together, these and other symptom clusters in my life have led to the reality that is, today, my MS, but I had no way to know it then.

So I can only now look at the past to guess at my future, while knowing that it could be much worse for no good reason at all because we really don't even know for sure what causes MS to relapse, much less its root cause.

So I got myself an edu-ma-cation on MS (one that is probably better than most others', as I have research and interpretive skills in the medical field as well as privileged access to legitimate clinical studies that the average person can't find via Google without a password).

I still don't know just how MS affects me except in the obvious ways (digestive disorders, parasthesias, problems with executive function/multitasking, tiny electrical shocks, speech dysfunction, memory lapses and unrelenting fatigue). I don't know if the war between my central nervous system and my immune system has spread in my brain. Maybe it has and will leave me incapable of walking or seeing tomorrow.

I don't know if my disease modifying therapy is working. I don't know if my brain, while I am in the "off season" (I'm not in a flare), is remyelinating. Will my MRI in April reveal bigger and more lesions and white spots or will they all have shrunken down to nothing? Will it just seem like a bad dream, then?

So all the edu-ma-cation in the world still doesn't answer these questions, except in hindsight.
All of McCandless's edu-ma-cation did not answer his questions either. Or if it did, it wasn't until it was too late for him to apply what he learned.

Also He made choices that put him in his dire straits, whereas I am gifted the realities of a chronic illness not of my own making. Still, I hope to try not to repeat his mistakes. Will I be a hero or a fool? I don't think I will be either, I will be just as human and flawed as he was.


Enter the exploration of my own interior life, post-diagnosis. Expressions of it include:
  • This blog.
  • Talking with friends. 
  • Researching. 
  • Celebrating what I can do. 
  • Learning resilience. 
  • Having a sense of humor

However, if I were more like McCandless, who took some major risks, I might spend all the money I have in the world on underdeveloped and poorly understood endovascular surgery as a new strategy to treat CCSVI (chronic cerebrospinal venous insufficiency) which may or may not be linked to MS. It would require that I travel to a foreign country, have all of my spinal fluid swapped out for new fluid, and live in quarantine for months. It's not shown to cure MS, it's not covered by insurance and it's not approved by the FDA.

But I'm not going there. I am not in an all-or-nothing situation. To me, that's like cutting off my finger to heal a mosquito bite. If I was sicker, maybe my perspective would change. But that's not my reality. And I don't think it was McCandless's reality, either. He had other options that were less extreme. He just made different choices.

Also, unlike McCandless, I have not formally started a training routine like others with MS have, partially because:
  • I am concerned about digestive issues that could really ruin a good long walk (trust me on this one)
  • I am lazy (because I can be)
  • I am exhausted (because my brain still wants to work at a higher capacity than the nerves can maintain)
  • I have arthritis and carpal tunnel as well and these just make me hurt more when I exercise; when it comes to MS, No Pain does not equal No Gain, it equals Relapse Potential
  • I actually don't have any mobility issues (except for an overly mobile bowel, whoops)
  • I think that what I'm doing for now is probably good enough
I am happy to squeeze in yoga and walking, and even then, it just depends on how I feel that day. Nothing as disciplined as an exercise routine has yet emerged, but with MS, you can only cleave to a routine if you are prepared to cancel half the time due to things beyond your control. I can't go to the pool as I'm allergic to chlorine gas, for instance. These are not excuse, they are my realities. Yes, I understand about using it or losing it, but to go to the far extreme seems excessive to me. You won't see me in a CrossFit class any time soon, let's put it that way.

As for the diet, I am relentless in my rejection of the notion of diet. Diets in America consist of self-deprivation, failures in common sense, major monetary expenditures, herd mentality and practices which are completely unsustainable. MS is not just happening to me "in the now," like McCandless's starvation did as a slow and gradual end game that ultimately could not be blamed on eating an inedible plant. My MS will happen forever, whether I eat candy bars or chia seeds, whether I sit on my ass all day long or complete a marathon.

And more about eating... and this is relevant because every single person I know with MS has encountered this from nonMSers to the point of oversaturation... All y'all please read this carefully:

Cutting out whole food groups to "heal" my MS is careless, stressful and unsustainable, and my naturopath has already confirmed I don't need to cut out anything but foods with sulfites (usually meaning wine, certain kinds of dried fruit and cured meats, all of which I can easily live without). So yes, I'm eating gluten and sugar. And so are people who say they are gluten-free or Paleo. They are secretly (or, in some cases, ignorantly) eating gluten and sugar. Even the true Celiac sufferers I know break down from time to time.

In this way, McCandless and I are on the same page: we just want the truth. Here's one for ya: Diets to cure neurological conditions are a FUCKING LIE, people. Neurological conditions are not metabolic in origin. Diets DO NOT CURE most chronic or serious illnesses that are not metabolic in origin.

I've also kept records like McCandless, though they are fewer and far between because I am between flare ups (I think? I'm still trying to figure this out..) and there's nothing new to record that can't be explained by my own bad behavior (not getting enough sleep, too much emotional stress, eating fat too late at night, etc.).

I have also prepared in some ways for my big lurch into the unknown by cobbling together a mini yoga studio in my office, investing in comfortable shoes, napping before I head off to work at the sleep lab, and saying No to the daily demands that side-swipe every parent in American nearly every day of their life (i.e. to bake cookies, sell tickets, drive kids, organize a car wash, attend a board meeting, revise a phone tree, volunteer at the play, set up for the swim meet, etc etc and etc.).

In this way, I am also like McCandless. My journey is decidedly an imperfect practice, a work in progress. I can probably do more. He could have probably done more. His life was also a work in progress. So is yours. Somewhere between all that planning and philosophizing, one has to actually live. And I have a family and a job and friends that matter just as much as the battle against the war inside me.


So... going back to the truth... The truth is, I will die, just like McCandless.

Obviously, my distaste for diets means I won't die of starvation. But I will die because, heck, we all die. You will die, too. Sometimes people take risks or make lousy choices, and they die. And sometimes people live sheltered or impeccable lives and, guess what? They die, too! The truth sucks, no?

I might die tomorrow of a stroke. I might die on the day of my daughter's graduation of a urinary tract infection that the MS can't abide. I might die ten years from now because someone didn't vaccinate their kid on philosophical grounds, leaving me to cough up a pertussic lung in a hospital after encountering their darling precious little germ factory at Safeway. I might get hit by a bus on my 65th birthday. I might fall down the stairs at the old folks home because of my MS. I might have a heart attack, which is more in line with my familial reality, while in my 80s.

In my 80s. So if I die in my 80s, then I lived a full life, right? Right??

However, I won't die by isolating myself from society.

Hey, I know what McCandless is fighting against. Society is full of shitheads, complete morons, bigots, twisted family monarchs and automatons. But it's also full of lightworkers, geniuses, selfless strangers, peacemakers, and freethinkers with hearts and souls at least the size of the bus McCandless co-opted in INTO THE WILD. I see these people every day in my life: they walk around thinly disguised as old friends, new friends, people on the ferry, service providers, random teenagers, voices on the phone.

So you can also rest well knowing that I probably won't die of suicide; that's something I feel I can safely put out there. I love people too much. The good ones, anyway. The ones who share, the ones with whom I can share.

Remember, it wasn't as if McCandless was miserable 100 percent of the time while on his journey. He certainly wasn't miserable while belly laughing with Mr. Hanz on the top of the hill, and he wasn't miserable while enjoying his handmade shower in Alaska or accompanying his "girlfriend" Tracy in a song at Slab City or swimming in the ocean, despite the fact he had a deep fear of water. His journey overflowed with joy, even over the taste and texture of a perfect apple (one of my favorite scenes, actually).

On the other hand, McCandless used a hat woven for him by a potential surrogate mother as a trail marker across the river; it was still there when he finally got the clue that maybe happiness was meant to be spent out in the world made most beautiful by those who loved him, but by then it was too late for him. He did not see the orange knit cap as the truth beacon it was. How very tragic, that a handmade gift could have delivered Tolstoy's message weeks, months to McCandless before he set off for Alaska.

One could say the other difference between us is that I don't deserve the MS, that he deserved to die of starvation. And another argument might be that McCandless did all this to himself and I didn't. Both are pretty flimsy.

What does it mean to deserve anything? Did OxFam not deserve his check for $25K? Did his friend Mr. Hanz deserve to lose his wife and child while away serving in the war? Did McCandless not deserve love? Do we know enough about MS to say with any certainty that it is a no-fault condition? How do we know it wasn't because of something I did a long time ago?

And what did McCandless "do to himself" except embark on a spiritual journey to achieve parity with truth? His pilgrimage had a bad outcome, but if it had a good outcome, we would not be knocking him his journey. Some would lionize him, even. Sometimes you do things to yourself and you get praised or rewarded. Not so much for our hero-fool. But you must admit, you wanted him to win. You wanted him to survive.

It's the same for me; people want me to win, want me to survive. Whether I have done anything to myself prior to diagnosis is a big question mark. For me, the goal now is to not do something devastating to myself now. And that will be my challenge from here on out. Which means being a guinea pig and wandering an untamed wilderness. Like McCandless admits at the end of the movie, he was not only lonely, but scared. I would be lying if I said I didn't feel this way some of the time (especially the latter). But what else is there to do, but move forward?


My MS diagnosis is one example of this contemporary adage. If I turn into a potato bug, curl up and die, then it is a bad outcome that is actually of my own doing. I cannot change certain realities, but I can change how I respond to them, and I've chosen to respect truth and hope at the same time. Who knows what my outcome will be. Today, it's good, but nobody knows what will happen tomorrow.

We cannot begrudge McCandless his own journey to find truth. Survival mechanisms notwithstanding, each and every one of us has a fate over which we have little control. McCandless also did not curl up into a potato bug and succumb to his family's abuses (which is more commonly how people "survive" similar situations in their own lives). Nor did he flinch at the idea of taking on survival in the Alaskan terrain. There is courage in there as well as naivete. Yes, he carried some faulty notions about how to survive, but in the end I still think he did better than most of us would in that singular situation of living off the land.

(Here, the snarky me wants to point out that he totally forgot about that fishing pole... Dude! You are in Alaska! Go fishing! I can't resist sharing this.)

But you know what? All bad taste and judgmentalism aside, I think he found what he was looking for. He found it in the apple, in playing music, in his visit to Salvation, in thwarting the river police after he kayaked without a permit. He found freedom, love, happiness and beauty.

How about you? What would happen if you decided to seek truth? How far would you go? And for you, would it be a hero's story or a fool's errand?

You will never know without trying. Have you? Have you tried?

Just a reminder... Chris McCandless (aka Alexander Supertramp) was a real human being
who made some devastatingly bad choices, but at least he was seeking truth in his life.
I can't help but be compelled to honor him for that.


So that's what spills forth after someone with MS watches a movie about survival (or failure to survive). I'm sure my theories and arguments are full of holes, but heck, so's my brain.

Sunday, December 22, 2013

Day in the Life of an MSer - Exhaustion and the Holidays

Degas -- "Tired Dancer" (1887)

1. Woke up exhausted. Coffee and Modafinil and supplements which are supposed to improve mental clarity did not seem to break through the fog until about 8pm last night. Or maybe it was because I was at a holiday party and the room was full of energy and so my brain plugged into that. I felt like I was at my best at around 11pm.

2. Did my usual 2-egg breakfast and kefir before taking my meds. Diarrhea hit about 2 hours later, regardless. Is that the MS, or is that the medication? Inquiring minds want to know. This, by the way, is my daily reality. Will I spend the day on the couch? On the toilet? Will that 20-items-long To-Do List be vanquished or simply pushed to the next day due to symptoms or side effects? Will I be able to honor plan A today or will I have to elicit plan B or even an impromptu plan C? That, in and of itself, is exhausting to think about.

3. Anticipated an exhausting lunch date with the MIL. She is aggravating to be around and I find it harder and harder to be compassionate for her. Complaints about shortness of breath (due to COPD, due to chain smoking) and pain with mobility (due to extreme sedentary lifestyle) are what lie behind her realities. I wish I had those realities because then I could do something about them. Not so much with MS. Surprisingly, she seems to have woken up to certain realities about an accident she had last summer which resulted in her breaking her hip. I would say that's a good sign except that if she is going to be 100 percent she needs to quit smoking and get more exercise, neither which appear to be part of her 2014 New Year's Resolutions. But at least she didn't spend the day griping.

4. Ate a fabulous spinach salad for lunch, which I figured would help with the cog fog. Spinach is my superhero food, when in a pinch, it always works. Well. Nope. Not today.

5. Attended a holiday matinee performance with family and saw a number of friends. Once I saw my daughter perform, I was ready to go. This is the first time I've ever felt like this. Could it be that I'm just a burned out dance mom, or could it be that fatigue has become my new normal?

6. My two teenagers today made many bitchy demands and accusations following some social and mental juggling from me at the performance (probably why I never lifted out of my cog fog...), even after I just did a buttload of favors and errands for them. Shape your own response to that.

7. Went from the performance home to good news, but too tired to truly celebrate and appreciate it. Wanted to nap but couldn't. Too much stimulation around me, not enough opportunity to recharge.

8. Finally scraped myself up off the couch to get ready for the neighborhood White Elephant party. I tried on several outfits before landing on one that worked with flat shoes. High heels just mean my calves and feet will be all twisted and cramped up the next day. I need to be able to walk and I could do with a little less overall pain right now. A low-grade headache, neuropathy in my fingers, and a lot of back pain from overdoing spinal twists in yoga as well as sitting in horribly uncomfortable chairs means more pain relievers will probably enter my diet today. Oh, let's not forget, I got a wild hair on Friday and reconfigured my office furniture and now I have sore muscles in places where I forgot I had muscles.

9. Party was great fun, I was grateful for the energy and some friends of mine who I've felt have been a bit vacant lately were really attentive last night. I mostly didn't slur or stutter or fumble. I did have a lot of word recall problems. But I also laughed a lot. And I came home with a fab new blanket for my office.

10. Morning after, and I am mostly recovered. A little foggy right now, but I've already taken my Modafinil and haven't had breakfast yet. Just updated today's calendar of things to do... it's a bit heavy on the chores but there's also some time carved out for baking with my daughter. I hope she is in a better mood today. When they get into moods, that just hacks me off at the knees, energy wise. I'm soaking in some Verilux full-spectrum light rays right now to store up for yet another busy day.

Friday, December 20, 2013

Welcome to craterBRAIN - December Update

I'm overdue to launch this blog, so here's a recent post from me via another source so you can get to know me better. I'll follow up with background soon.

Generally I have been doing fine overall, though there are days when the fatigue kicks in and I work at 25-50 percent of my capacity because that is just about all I can give. I try to avoid impatience and won't allow myself to be sad about this. I just do what I can and forge ahead. It means I'm always a little behind on tasks, but that will just have to be the way it is. I'm going with the "ask for forgiveness later" approach. I pretty much store up my brain "power" for my nights at work and let it fall apart when I'm not at the clinic. Luckily, I've only had one night where I really was so tired I caught myself in microsleeps. By and large, though, I'm on top of it.

Today I'm feeling very instructive and want to post about what it means for many to have MS, using myself as an example. Please read through as it's very likely you will learn something surprising about this disease.It's a fascinating science experiment to track how your brain functions following periods of busyness (physical and/or mental and/or emotional). Here's what happens to me, on a physiological basis:
  1. My frontal lobe, occipital lobe and subcortical brain (specifically the hypothalamus) are the sites of my lesions. These are regions of scar tissue where my immune system attacked my central nervous system, leaving behind individual "potholes" on the surface of my nerves (the myelin sheath) as well as craters in my gray and/or white matter).

    The frontal lobe is in charge of executive functions, i.e.: cognitive processes such as recognizing consequences, making choices, monitoring social behavior, differentiation, long-term memory, verbal fluency, reasoning, task flexibility, and problem solving, planning, execution of ideas.

    The occipital lobe is all about vision and color perception.

    The hypothalamus controls basic "drive" functions, including eating, drinking, sex, temperature control, sleep, aggression, plus it releases hormones into the body to serve distant systems.
  2. Frontal lobe: When I overdo something, I notice that my memory fails in terms of word or name recall. I definitely fumble with my speech. I also struggle to make decisions and feel as if I have ADD. When I'm especially taxed, my brain is still there for me, but it's at a much slower pace. Here's why: when parts of the brain have a lot of demands that the nerves can't maintain, other nerves cross over from other parts of the brain to compensate (thank you, corpus collosum). Which is really cool! But it comes at a cost. Your brain is fueled by glucose, and when other nerve clusters have to step in to compensate, they use up way more glucose than the normal nerves would use. This results in fatigue because everything slows down (imagine an excruciatingly slow computer or one which freezes up in the middle of processing). It's not the same as muscular "I just chopped a cord of wood" fatigue, though emotional and physical demands can also lead to this "cognitive fog," too.
  3. Occipital lobe: When I overdo something, I eventually begin to feel like I need reading glasses, and my prescription lenses for distance sight aren't strong enough. When I get my eyes checked, everything is fine otherwise. It's not aging, it's the MS.
  4. Hypothalamus: When I overdo something, I feel it mostly in being overheated all the time, as my thermostat is not working properly, so I'm hot all the time anyway... and when I overdo it, it gets even worse. I was probably the only person during our recent cold snap who drove with the AC on high in the car to cool down. The overheating is a problem with multiple sclerosis, as it is another cause for needing to slow down... inflammation leads to less efficient performance and things like disabling migraines.
These challenges lead to me having to back out of some activities, or having to nap more frequently, or having to change clothes multiple times because of overheating, or putting off detailed work because I can't manage all the information very effectively, as I feel like I'm in a fog or permanently distracted by all kinds of incoming stimuli. These are challenges that no one else but me can see, which adds to their complexity.

In example, I was recently asked to help with organizing the volunteers for a dance studio event (this is someone who knows about my diagnosis), and when I told them No, you could see that they couldn't understand why I couldn't help out. Are you kidding? That just sounds like a living Hell to me right now. LOL. It's like asking a person with a broken leg to help somebody with packing and moving. I guess one could attempt it, but there would be much higher odds of failure.

So really the challenges are not even with myself but with others who may not understand the amount of energy and effort involved in just moving normally through the day. I try to not take it personally when those around me are disappointed (or even judgmental or upset) when I tell them No... they don't see my challenges and/or forget how they can limit me, and I've been such an active person in the past it seems impossible that I should have any barriers now, especially since I don't have the physical limitations with sight and/or mobility that usually accompany MS.

But take a look at its most common symptoms (from the MS Society website):
  • Fatigue**
  • Numbness**
  • Walking (Gait), Balance, & Coordination Problems
  • *Bladder Dysfunction**
  • Bowel Dysfunction**
  • Vision Problems**
  • Dizziness and Vertigo*
  • Sexual DysfunctionPain**
  • Cognitive Dysfunction**
  • Emotional Changes
  • Depression
  • Spasticity* **
And here are the less common symptoms:
  • Speech Disorders*/**
  • Swallowing Problems*
  • Headache**
  • Hearing Loss
  • Seizures*
  • Tremor*/**
  • Respiration / Breathing Problems* 
  • Itching **
*Visible to others**My worst symptoms

I have 12 out of 21 of these symptoms, but only 2 of them are apparent to others. I also have friends with MS who, were you to encounter them in the moment, wouldn't show that they were in the middle of an MS attack. And yet, they are, and they are doing everything they can to push through. It's like holding on to a rope with sweaty hands. You are constantly adjusting your grip, afraid of what will happen if you lose contact.

So I guess the point is this: though most people think of MS as a disabling disease leading to being bedridden or in a wheelchair or using a cane and/or severe vision loss/blindness, the fact is that most of us with MS don't have these symptoms, but a multitude of other symptoms which mess with our ability to lead normal lives.

It's tough for many, because we don't live in world which defaults to compassion when it comes to reacting to others' behavior. I feel luckier than most because I have loving and supportive people in my life who are understanding and accept that if I say I'm not 100%, I mean it. And my MS doesn't impact me at work (and my boss doesn't know, anyway), for which I'm eternally grateful.

But there are those with MS who are told they are faking it, that they are mentally ill, that they just need to buck up and stop whining/complaining. They are told to cure themselves with some sort of Chinese herb or to fix it with the Paleo diet or to have expensive, non-FDA approved treatments in Mexico or Switzerland.

The truth is there is no cure for MS, there is no supplement or diet which will reverse MS, and the cost of having MS can really take its toll on those with limited insurance and support systems (the price of a typical MS disease modifying therapy is well over $50k annually and that's not counting all the MRIs, the spinal tap, the medications needed to relieve relapses or offset symptoms or side effects of the medications).

I write this longish post for those people because, truly, MS is a curse, and they don't have any way to get relief without the love ans support and compassion of the people in their lives, whether they are friends or family or perfect strangers. I hope, as you set aside time to think about 2014 resolutions, you add awareness and compassion for invisible illnesses to your list. Not that you aren't already practicing these, as you are on this list of mine precisely because you are ... but it's never a bad calling to polish those skills and/or share what you know with others to help spread the idea that invisible illnesses are real and confounding to those around you who may not know better.

Okay, 'nuff said! I wish you all a peaceful and healthy holiday season and thank every soul out there who has shown me support and love these last 6 months. It would be tenfold more difficult to go through this experience of learning to live with MS had it not been for all y'all in my life. Hugs!​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​