Monday, October 6, 2008

No Empire, No More

My favorite comedian is a cross-dressing English chap named Eddie Izzard. He does a bit in his "Dress to Kill" show about Europe and World War 2 which is hysterical. (And you can watch it here.) At the end of it he's talking about England having to give back the countries they had acquired after many years of being one of the world's greatest empires and he shakes his head and says in a dour voice, "No empire, no longer." It's that quote to which I referred when I decided to call my blog No Empire No More. (I did realize I was misquoting; I didn't want to rip him off completely.) It expresses how I've felt since my MS diagnosis. I was once powerful and rich with energy and capacity. Now I'm not always sure who I am anymore.

In younger years, I was something of an athlete. I've always been a little clumsy. My shins riddled with bruises from lacadaisical clamberings in and out of our huge van or regular skirmishes with my big brother. But I played soccer and hockey for many years, and was pretty good at both. I seemed to have plenty of physical coordination whenever I set my mind to using it. I spent many teenage summers surfing and winters skiing and snowboarding. I had no fear. I would launch myself whole-heartedly into any strenuous or dangerous physical activity. I've jumped off of 80 foot bridges in Central America, and had the fortitude after to climb the 30 slippery feet of mud out of those rivers. I dragged my poor father on every thrill ride the east coast has to offer. I hiked in the Andes mountains in Chile. I rock-climbed and repelled in the Shenandoah Valley. I was in fantastic shape before my two pregnancies made me a little squishy.

I also used to be really smart. I have always been a good student and a rabid reader. My IQ was tested as a kid and it was pretty high. My memory was just shy of photographic. I have always been an endless treasure trove of trivia. I have always been a quick study with a knack for figuring out the best and fastest way to do anything I've set my mind to. I took one of those aptitude tests in high school that are supposed to help you decide what to be when you grow up, and the results were that I could probably succeed at anything. (Not very helpful for someone who is terminally indecisive.) I made extra money in college tutoring in my major and editing people's papers for them in a myriad of subjects. I should have gone pre-med but my first passion was music and I pursued that first. I survived being the youngest and only female student in my major by being the best student in my major. I used to be able to read a book on anything and master it.

I used to be able to do it ALL. I worked two jobs the whole time I was in school and averaged about 3 hours of sleep a night. I could juggle kids and jobs and school and friends with aplomb. I never used to have any trouble keeping track of where everyone goes and when. I could remember all my tasks, assignments, grocery lists, etc without having to write them down, and even return the library books on time. I was a multi-tasking phenom. I felt like the Empress in my world most of the time. I manged a lot of work and stress, and felt like I was born to do it. Don't get me wrong, I've never considered myself royal or even dignified. But I used to have the sense that I'd been born into the nurture and nature that formed me into the intelligent and driven person my parents always expected me to become. I was in control. I knew that I could decide what happened in my empire and that edicts I passed down to my "colonies" would be strictly adhered to. By sheer force of will (my father insists that I include congenital pathological stubborness in my medical history), I have always been adept at getting most things in my world to go the way I chose them too. Maybe luck had something to do with it, but more often than not, things in life have turned out exactly as I expected. Until now.

I've not suffered so much as anyone involved in WW2, and I would never mean to imply that. But since MS has become part of my life, I've seen the gradual decline of my empire. Thanks to a disease that is enigmatic and unpredictable at best, and crippling and devestating at worst, I can no longer do it all. I have lost access to the vast reserves of energy I used to tap at will. I have lost the ability to answer the question, "What if?," with even a small confidence in my best guesses. I can't remember everything anymore; there are holes in my brain and things leak out from time to time. I certainly cannot do one eighth of the physical activites I used to enjoy since most of them require good balance and all of them require some level of strengh. I feel like MS has taken a lot from me, but it has given me one thing. It has given me fear. I never used to be afraid of injuring myself. I've broken eleven bones and had two concussions; all of which I earned in fantastic adventurous ways. I have a reputation among friends and family for being "tough as nails like her father." Now, I'm afraid to go jogging on my own. What if I get hot, lose the feeling in my legs and feet, and end up falling and smashing my face or breaking a hip? Who will teach my son to surf now that I can't balance on the board? What if I get optic neuritis? I work in imaging for chryssake, how the hell am I gonna work if I can't see? My brothers are retards, who's gonna take care of my parents when they're old(er) if I'm disabled myself? The questions go on ad nauseum.

I'm not happy about it, but I've started to get accustomed to not being capable physically of what I once was. Blindness and disability are scary enough, but it's cognitive impairment that really has me worried. People know me as the answer girl. They think of me not only as smart, but really fucking smart and I'm not ready to let them down. They rely on me for useless information and pratical know-how. If someone asks me to describe myself "intelligent" is the first adjective I reach for and not because I'm arrogant. I'm not bragging here; I've no need to. Nerdiness is the side-effect of my personality and I've just reached an age where I am comfortable embracing my geek-dom. Here I am, finally confident in myself at least intellectually. Now some neurologist tells me I've got a disease that will definitely knock me off my high horse in the world of sports and fitness. Will likely result in future embarrassment at loss of control of bladder and bowel. All this and mental acuity goes in the toilet as well?!

It may be lame, but I indentify myself with my brainy-ness. What I'm really afraid of is: Who will I be when I'm not smart anymore? Who will take up the responsibilities of my mind? Will I ever learn to trust someone else to run the Empire?


Lazy Julie said...

While reading your post, my eyes started welling up. By the time I finished, tears were rolling down my cheeks--not because I feel sorry for you, but because I know EXACTLY how you feel.

When people ask me how MS has changed me I tell them that it has taken away my sense of invincibility. It's taken my freakish strength and my belief that I will always be this way. Not so, not so.

I do have Optic Neuritis and I wonder, if my eyesight keeps getting worse, how will I drive my kids to school and get to my job that is not on public transportation. I worry about work and money and insurance and.........

And then, I realize we all have just today. And today, I'm glad I found your blog and read your post.

Lazy Julie

Bald Ben said...

That last line is Phenomenal. "Who will run the Empire?" God damn I'm glad you wrote that, and I sorry I didn't. I've been wondering about the title of the blog. I thought it was great, figure it was a lyric somewhere, but I really dig it.

I know you read what I wrote at my blog, so I am picking up what you're putting down.

I didn't address cognictive function over at my spot, but it is one of the scariest things before us. I already stutter a bit, which is something I never did before. I have always had a pretty good vocabulary, I was always able to talk a good game, but these days I find myself losing words left and right. It's so so frustrating. More times than not my time is spent trying to figure out other words for what I am trying to say. I am so fearful that this is going to get worse.

Although, on the other hand, you can look at my Aunt who has ALS. a horrible disease that robs you of everything but your mind. So my Aunt has sat in a chair totally immobile for the last 6 years, unable to talk or interact with anyone. It breaks my heart for her.

Perhaps if this is our fate losing our sense of perception might have a different significance. A very selfish one, but different none the less.

Lazy Julie is right though, we don't know what tomorrow will bring, we just gotta enjoy what we got. For all we know we could get hit by a bus tomorrow. Although, we already sorta did. It's just a really big bus that is moving very slowly. It still hurts though.

Bubbie said...

Nice to find another Floridian in the MS blog world. (I can't wait for that cold front)
Your post really touched me. Redefining who I am after MS was the hardest hurdle for me, even harder than the meds and flares. It's hard to explain, but in a way, I feel that I have gained at least as much as I have lost. It just wasn't anything I could ever have expected.


It may be lame, but I indentify myself with my brainy-ness. What I'm really afraid of is: Who will I be when I'm not smart anymore? Who will take up the responsibilities of my mind? Will I ever learn to trust someone else to run the Empire?

I could have written this paragraph at one time. I've never been physically/athletically talented, but I was always the quiet "smart" one. And my identity is so tied up with my music, and MS has threatened that many times now, I'm still not sure who I am becoming.

As my mind, hands, eyes, hearing, balance all seem to come and go and not come quite back, it takes away any sense of security, that's for sure. You are not alone and many understand exactly what you are saying.


(btw...reading the white lettering on black background is extremely difficult to these MS eyes.)

Weeble Girl said...

Hey there, thanks for stopping by my blog and now I finally had the chance to come read you!

I know everything you mean in the words of this post. I am a teacher and it scares the bejeepers out of me when I forget and I forget all sorts of things.

I was reading aloud the other day and said "Buttload" instead of Boatload which made me and all of them laugh. What a flipping dork I am now. I forget what I am doing sometimes when I am driving. Just little moments here and there where I wonder what the heck I am doing and why I am doing it.

Hugs to you,


Please come accept your award.

pUNKrOCKfairy said...

Thanks to all of you for your comments. This post was bumping around inside me for a long time and it's a relief to have it out and understood.

About Me. said...

I found your blog on Maybe I'm just lazy. I am so glad that I did. I totally can relate to your post, "No Empire, No More". I keep thinking that I will get used to my limitations. It has been 6 years since I was diagnosed and every day I am still surprised that I cannot run, can barely walk, etc. But, we must go on and not let this stupid disease beat us. I hope to hear from you someday. I too have a blog, not just about MS; I have many things I post about. It is my online journal.
Have a groovy day!

Weeble Girl said...

Please stop by my blog and pick up your award,


One of my favorite quotes (Alice Walker) goes something like this (because MY mind has become "tarded" with MS and I CRS!)..."What the mind doesn't understand, it worships or fears".

I've spent my time "worshiping or fearing" my MS at both ends of the extreme over the past 5 years...either laying prostrate in the Temple of the MS gods, praying for *wellness*, *wholeness*, *denial*, *I have MS, but it doesn't have me*, yada, yada, positive crap, etc., or running stark-raving mad down the dark MS trail away from the unseen that is chasing me.

Finding physical balance with MS is a bitch, but achieving *emotional balance* between extremes is much more difficult for me. And, not unlike losing physical balance, I generally only recognize my emotional imbalance when I've already LOST it!

Anyway, what I'm TRYING to say here is simple: I hear ya. (And it probably would have been WAY EASIER on everyone if I had just typed those three words!)

Linda D. in Seattle