Wednesday, September 30, 2009

Canyon Bound!...

Off to check and see if anyone has shoveled enough dirt in the Grand Canyon to fill 'er up! Be back soon, preciouses...until then, click that link over there for 150 MS Blogs to Suck Your Time and entertain yourselves with a few wonderful blogs!

Wednesday, September 23, 2009

Embracing Mortality, Living Immortal...

I was 9 years old when I learned about mortality...the lesson was during a time in my life when I should have been allowed to continue to believe I could fly, if only I learned to flap my arms fast enough. Nine is awfully young to be asked to give up magical thinking and one's belief time is eternal...or at the very least, hoping the summer season would last forever without school.

It was the end of September in the fall of 1973 when I discovered I was vulnerable. It was this particular fall, like no other season, I was suddenly forced to believe my body was not invincible and I was merely mortal...a fragile human being walking on the egg shells of time.

On a mildly warm fall day, I was playing tag football with my best friend on the farm, when I gradually began to feel "weak"...I was having trouble standing without fatigue and the game drained all of my energy. It was only a few hours later my mother picked me up and took me home from our slumber party...I didn't really want to leave, but I felt strange and very tired.

Over the course of the next 24 hours, I developed what my mother thought was the stomach 1973, my family not only didn't believe in using modern medicine, they simply couldn't afford it. So, I was kept at home feeling very ill and vomiting anything I ate...mother still made me go to Sunday school that day, thinking I was only feigning illness to get out of paying my respects to the Baby Jesus. After all, I HAD faked illness before and successfully been allowed to stay home from church.

The next day, I was allowed to stay home from school because my temperature "didn't feel right" the days of the old mercury thermometers, my mother still felt the back of her hand was a more reliable gauge of fever than science. EP (my father) had a short business trip planned to the city 100 miles away, so my mother loaded me up in the van and we all drove out of town...still believing the stomach flu would pass as quickly as it had set in.

By the middle of the afternoon, with my parents in a store while I rested in the van, I suddenly had a strange sensation something was terribly wrong in my body...and I was frightened. I needed to find my mother to let her know I was becoming sicker, so I tried to walk into the store, collapsing at the front doors. Someone alerted my parents to the lump of flesh balled up outside and my parents came to scoop me up...rather than stopping at a hospital in the city, they drove the 100 miles BACK to our farming village to consult with the doctor in a nearby town...I heard my mother put the phone down and try to tell EP calmly the doctor had said to take me to the hospital...and then I passed out again.

I recall being quite alarmed when my father/EP, who was not known for affection, lifted me out of the car at the hospital and carried me into the emergency room practically running...I remember being relieved I was not asked to walk in myself. The doctor met us at the ER, took one look at me, poked my abdomen causing me to nearly pass out again, and uttered the words, "Prep her". I had no idea what those words meant, but I could sense the fear on my mother's face. The last thing I remember is having my arms strapped down out to my side in a strange crucifix fashion while staring into bright, hot lights above...I was screaming loudly, but it was as if no one could hear me...or perhaps the screams were only in my mind.

When I eventually recall being conscious again, I could hear the hum of some sort of machine beside me, and saw my mother crying in the chair across the room...I vaguely remember hearing the doctor telling her somewhat sternly, "Another few hours and she wouldn't have made it". A nurse was adjusting an IV line over head and, with what seemed like surprise in her voice said, "Oh, you're back!" She then very gently smoothed my hair away from my face and turned to tell the doctor I was "awake now" was so strange receiving such a gentle caress from a stranger.

I had narrowly survived a ruptured appendix and the ravages of septicemia that had infected my body over the prior 48 hours. Over the next 3 weeks, I would remain in the hospital, receiving IV infusions of various antibiotics, and trying to come to terms with my near death experience.


At the age of 9 years old, I was forced to embrace my own mortality. I remember the exact moment in time the realization of impending death shadowed my thinking...I remember touching upon an understanding that shattered my innocence: I was merely mortal. I could and would die some day and I would cease to be. Illness could overcome me at any time, any place. My body was fragile and unpredictable. It seeped into my thinking quietly, yet with the force of a strong undercurrent, washing away my young foundation.

I believe it was this experience that continued (and continues) to color my view of life as I know it. And this very experience has remained always present in my unconscious, teaching me to be cautious because illness is unpredictable and Life is fragile...the experience shaped much of my adult life and how I have viewed and approached illness (and wellness) in my body, particularly my initial response to being diagnosed with Multiple Sclerosis.

The day I was diagnosed with MS, I embraced my mortality. Words like "fate" and "punishment" and various other themes of demise salted my thinking. I was angry and I was sad, sometimes dipping into all five stages of Kubler-Ross grief in a matter of hours. I recall believing I would most likely end up being in that 5% of the MS population who becomes wheelchair-bound in their first 5 years of diagnosis. I was terrified I would end up a ward of the State tucked away in some dingy nursing home and become either too disabled mentally or physically to *pull my own plug* so to speak. I did everything I could think of in my ultra-organized, anal-retentive fashion of thinking to "prepare" for the inevitable...I exercised every option available to make proper preparations for my eventual demise - from Living Wills to savings accounts - all to embrace my mortality.

Interestingly enough, what I have finally begun to learn in 45 years of walking on this earth and 6 years being diagnosed with MS is this: In embracing my mortality, I have neglected a key component necessary in preparing to die. I HAVE FORGOTTEN HOW TO LIVE.

These past several months while I have been away from this blog/the computer/email, I have been retraining my mind and body in the simple act of LIVING. In a world where the Grim Reaper has always been felt breathing down my neck, this has been no easy task. I remain rough around the edges as I continue to try new paths, new tasks, and learn new LIFE skills. But slowly, I have begun to feel the grip of MS and the squeeze of mortality loosening...I am beginning to feel as though I may once again fill my mortal lungs full of breath without worry the air may be the last I inhale. I am learning that, although the physical body is mortal, LIFE is eternal and will continue on long after my physical being ceases to exist...this notion has nothing to do with religion or heaven/hell/Karma, but everything to do with being present NOW...LIVING my life as though I am immortal.

As we turn the wheel of the seasons yet another round, I am keenly aware of the animal instinct to take stock in our bounty for the winter. Fall is always a time to begin looking toward the dark winter of our souls as we prepare for that quiet stillness. I feel comfortable moving into this new season, knowing this summer, I have harvested all I need to survive the chill of my unconscious being.

I know that I am merely a mortal...and I am CHOOSING to live life like there is no tomorrow. I am CHOOSING to live immortal...

Sunday, September 13, 2009

MS Inspiration?...

I have to admit...there is little that truly inspires me, except for the occasional glorious sunset and right now, the thought of eating a huge piece of chocolate cake (which I don't have available, BUBBIE! Not on the Met-Miracle plan...sigh). But, after spending my Saturday at the local Bike MS Ride here in Washington State, I have found myself *inspired* (not to be confused with perspired or even expired).

Yes, I was once again in attendance at the area "Rah Rah MS Ride"...that's how I usually refer to it. It used to be called the MS 150, but somehow that must have confused the less than logical riders, so it's now just called the Bike MS Ride. The National MS Society sponsors a gazillion of these rides across the United States each year and the Greater Washington MS Society Chapter holds their version of the ride in September every year, rain or shine. I've been to 3 of these may recall, the FIRST two involved an incredible amount of beauching and moaning from the CHEESE as she had somehow found herself in a less than glamorous cabinet position as the "tent czar" for Dr. She Who Will Not Be Named team. It was hella work.

THIS year, I finally came to my senses and decided it was time to give some other poor and undeserving individual the "tent czar" title (and to take care of the Higher Maintenance Dr. SWWNBN!) The planning took too much of my time and energy away from me in the past...and I just thought it was someone else' *turn*. Thank goodness another willing participant took up the cause (and she's on the list for my left kidney, should she ever need it)! So, I was free to simply become what I call "tent bling" at the event this year and actually ENJOY myself for the day (watching other worker ants do what I used to do).

It was a *bootiful* and warm, late summer day here in the typically-raining-Puget-Sound area on Saturday...I had a pleasant hour or so drive to Mount Vernon, Washington, singing my guts out with the car stereo and appearing like a mad woman darting down the freeway. I arrived on site (but not on time) to a warm hug and greeting from our local MS celebrity, Trevis Gleason, over at Every Day's OK...I've "outted" him before and I think he's used to my shenanigans. :-)

Trevis is one of MANY old friends, who I tend to see only once a year at the Bike MS event (probably because he usually sees ME first and runs to hide!)...the event becomes something of an OLD HOME week (or homecoming week, for those of you not in the know about southern colloquialisms) as I catch up with the news and the lives of several people, all bound together by those two initials: MS.

The Bike MS Ride can be a bit of a downer for me sometimes. Mostly because there are SOOO many people there WITH MS, the disease gets thrown up in my face like a drunken date (wait...I think I was the one who used to throw up on my dates?). Everywhere I look, there's MS. Everything ABOUT the event is MS. Everyone is focused on "riding for a cure" and "fundraising", neither of which I can honestly say (in my humble opinion, of course) will ever happen in my lifetime OR be enough money to assist.

The majority of the riders are those *healthy* know...the one's WITHOUT MS. There are always a percentage of MSer's riding, too...those that are functioning well enough to pedal. There are two-wheeled bikes, tandem bikes, unicycles, three-wheeled bikes, and a sea of riders all out riding for their own, individual reasons. They leave before Dawn's Crack (or shortly after she shows it), heading out to PROVE something, if only for themselves. And eventually, they all trickle back in to base camp...exhausted and physically spent...some barely able to walk (or sit!) once they dismount their wheels.

This is when the tent becomes a handy gathering place...each team is assigned one (tent, that is), and each team carries on their OWN festivities for the remaining hours or minutes of sunlight left in the day. Each team talks about their fundraising, their awards received (for best jerseys, best team spirit, etc.), and everyone catches up with each other...those people who only see each other once a year for this event.

There is an evening "Rah Rah MS" program also, where Trevis is generally a guest speaker (and you DO still owe me two beers, my man, for NOT doing the *sign* during your speech!). Teams gather in a huge crowd and our disease's favorite cheerleader and spokesperson talks about how we have to end the devastation of Multiple Sclerosis NOW (I have to admit, the man CAN give an inspiring speech that usually brings a tear or two to my eyes!). The crowd is filled with energy, even though the majority of the participants are beyond exhaustion from their ride. THEY are there for us...THEY are there for me...THEY are there because it is something THEY can do, if only for a weekend. THEY are there pedaling and riding because it is the one thing THEY CAN do, because THEY either know someone who's life has been affected by MS or they are carrying the disease with them in their own bodies/hearts...those two, simple letters: MS.

I have to admit something to you now...there is nothing more humbling or more INSPIRING than to see 60 - 80 cyclists wearing MY NAME (no, not BrainCheese...the name my mother gave me!) on the back of their riding jersey. That's right. The CHEESE somehow finds her name in the jersey design each year, along with the names of 10 - 20 other MSer's the team rides for (although, now that I've relieved myself of the "tent czar" title, Dr. SWWNBN probably will no longer remember how to SPELL my name in year's to come. LOL). THEY ride for me...THEY ride symbolically for you...wherever YOU are, living with MS.

I returned home late in the evening last night, still singing loudly in my car to Gloria Gayner's "I Will Survive" (but hopefully after dark, looking less like a lunatic), and wearing the fabulous T-shirt I received from the firemen on the team...long story, but maybe one I'll get around to sharing later...suffice it to say, I SLEPT in that T-shirt because I didn't want to take it off!

I crawled into the comfort of my own bed last night as the tears made damp spots on my pillow...but they were the tears of a peaceful kind. They were tears I don't often shed because I have little reason to feel them most of the time or, more often, I make little time to ALLOW them. They were tears of inspiration and *hope* (dare I use that word?). They were tears that wash the soul, leaving only the purest of shine on the heart. MS has brought many things into my life, much of which, I would gladly give BACK to the disease to keep. But, I would never, ever trade the feeling of inspiration I get being in the company of MS on this particular weekend.

THANK YOU to all who ride, wherever you ride, in the name of are my hope and inspiration...

Friday, September 04, 2009

Andy Warhol's Got Nothing On Me...

And neither does President Obama! Introducing the "Yes We Can":

OK, perhaps I've had a little too much free time this evening...I admit it. In between doing my mountain O' dishes and laundry, I was trying to come up with some kind of catchy title and pix for a blog post! It was either altering the Andy Warhol Campbell's Soup can painting, or trying to find some kind of picture demonstrating the word "commitment" that would be funny, yet not tasteless to the population of people I serve in my job...AKA, the psychiatrically committed. I settled on mocking Andy. although he'd probably FIT in the latter category as well. :-)

Well..."Woot?!?" you say. "What is all of this energetic *yes we can* and *commitment* got to do with anything? As a matter of fact, when has the CHEESE ever been energetic or committed (not commitable, COMMITTED) about anything?" Oh, and also, "Do we really care?"

I suppose the answers for the mass collective (all two of you who read this drivel) to the above questions would be in this sequence: Nothing, never, and no.'re gonna hear about it anyway. Because I'm just like that...annoying to the core!


Oh, sure...NOW I've got your attention. NOW your questions are along the lines of, "But how is the CHEESE and her fat arse that follows her going to possibly WALK 13.1 miles without stimulating a coronary?" Simple...I've got a plan. But first (**as always, que the background music and prepare yourselves for drooling boredom**), I should provide you with a little background information.

Long, long ago in the land of BrainCheeseville, I used to be athletic. Oh, SHUDDUP already! I was. I *used* to play competitive basketball on a college woman's team as well as softball...and I *used* to run/jog several times a week. Then, life took over, a career ensued, relationships fell into chaos...and I started drinking like a sailor, only I didn't have a boat...or maybe the drinking came along and the other things fell into place. I really can't recall...I was drunk. :-)

In 2001, I convinced myself and a naive friend it was time to "get back in shape" and, what better goal than to walk the Seattle Half Marathon walk? Well, oddly my friend fell for my grandiose notion and we began training for the event. And then we walked it again in 2002, and again in 2003 (I have the finisher medals to prove it, dayumit!).

I doubt YOU will recall (but I remember it as though it were yesterday...or at least a horrible PTSD flashback), but I was diagnosed with Multiple Sclerosis on TAX DAY 2003. Life changed that year around me and in me, but I tried to ignore the information as best I could. I was determined to *carry on* just as I had prediagnosis...blindly and ignorantly. And I proceeded to walk the Half Marathon Walk that year as well...of course, without proper training and without paying homage to the MS gods. I also proceeded to become sicker than I had been in many years...AKA, severe MS relapse...which lasted many weeks.

My neurologist at the time advised me not to *take on* such an endeavor was too stressing for my body...I had to learn to accept my limitations...yadda, yadda, yadda. I switched neurologists to Dr. SWWNBN, who also said the similar advice. Although, I think Dr. SWWNBN basically said I was fat, old, and had MS...the makings of a perfect storm (she didn't REALLY say that, but that IS what I heard).

For the past 6 years, I have been resting on my haunches...waiting...mumbling to myself...wondering if I would EVER feel "better than this" again. This past year and summer, I ceased waiting. I made a conscious decision to MOVE from my place of inertia, finally (it only took me 6 years...give me a break!) understanding it was the WAITING that might kill me...not the movement. It was the waiting in my mind (for the other shoe to drop, etc.) that was slowly corroding away my joy.

After completing my 100 mile summer walk, I decided I needed a new goal to focus on...the Seattle Half Marathon Walk popped in my head. Why not? Why couldn't I? Why yes, I think I can! Hence, the *Yes We Can* up above in the picture...took me long enough to get to that, huh? LOL

Now, I'm certainly not saying EVERYONE should sign up for a 1/2 marathon walk near you...and I'm not even coming close to saying ANYONE should live their life following the blueprint I am using. ALL I'm saying is (or my infamous line, "I'm just sayin"), Life has an unusual learning curve while THROWING curves at us. It has taken me 6 long and painful years to reach a place where I can see life and my identity is NOT Multiple Sclerosis. It is a part of me, but it is something that is becoming a smaller and smaller part...because I've finally chosen to see around it and through it.

"Oh, sure," you say. "It's easy to talk all big pants about MS when you feel GOOD, now isn't it?"

And I answer, "Well, HELL yes it is!"

But I feel *good* right now because I had to choose it. And I'm fairly certain I would feel *good* these days even if I were flat on my back in a world-spinning, pain-inducing, leg-dragging, fatigue-splitting RELAPSE (but I would PREFER not to test that theory at the moment either). I wouldn't feel WELL, but I could still feel *good* about how I am choosing to focus my life and direction these days.

I've got 3 (long) months to train for my goal in November...but mentally, I've been training for this event all of my life. I've pulled a few mental muscles along the way and I've even abandoned my mind's workouts for weeks or months at a time. The important thing for me is to not focus on where I am at currently, but where I intend to BE and how I am going to get there.

Wish me luck...I've now officially committed. Or, at the very least, watch with amusement as I bumble along THIS new path!...

Tuesday, September 01, 2009

How Do We Know?

I've recently been tossling with a strange dilemma...but the full ramifications of my conflict will require a bit of back ground information first. Stay with me here...I'm gonna need your expert input (or humorous responses anyway).

OK, so all y'all know I was diagnosed with Multiple Sclerosis over 6 years ago...duh. That's all I seem to talk about on this blog, aside from the random fart joke thrown in here or there! And y'all know I remain employed in a full time, top secret government job (janitorial really, but I'm still not allowed to discuss it lest I be water-boarded for disobedience). In my full-time, top secret "govmet" job, I am ENTITLED to (I prefer the word *entitled*...seems so very righteous) 16 weeks of Federally sanctioned Family Medical Leave Act (FMLA) time. Well, actually FMLA ENTITLES me to 12 weeks of time away from work in a rolling calendar govmet employer tacks on another 4 weeks for good measure.

Anywhozit...each year, my neurologist, Dr. She Who Will Not Be Named, fills out a formal paper called a "Medical Certificate of Need", which pretty much guarantees my employee right to miss 16 weeks of work BEFORE my govmet employer can legally replace me with a potty-trained chimp and sever my status as THE potty-trained chimp full time. But what my employer/FMLA also requires me to do is fill out a sick leave form for every freakin' fraction of a minute I might be absent from work due to illness (so it can be held against my 16 week allotment of time, should the *other* plan to fire me for bad behavior fall through).

On this sick leave form, I have several choices I can check as to WHY I am needing to use up my employer provided sick choices range from something as simple as a medical appointment (and oddly, they will NOT allow me to claim getting my nails done as a "medical necessity"...sticklers for rules) to personal illness to the almighty check box for "serious medical condition", AKA, FMLA, AKA, Multiple Sclerosis. Until this past year, I was never aware I HAD a choice which box to check: I was under the assumption I MUST check the "serious medical condition" box for each and every second of sick leave I begged off my employer.

So, a few months ago, I learned a dirty, little secret...I was neither required nor expected to check that "serious medical condition" box UNLESS my reason for illness absence was directly related to my MS! Who KNEW?!? I had been checking that box for 6, long, excruciating years for every sniffle or sneeze of time I missed at work!

Now, granted I have never missed anywhere near 16 weeks of work in any calendar year...but when I discovered this tidbit of information, I felt liberated. Suddenly I no longer had to count every bout of diarrhea or every head cold with fever day I missed and blame it on MS...if it wasn't the fault of MS, it wouldn't count against my 16 would just be viewed as *normal* illness...whatever the heck that is/was.

OK, I'm getting to my strange dilemma here...hang on.

This past Friday, I awoke feeling dizzy and nauseated (which I thought would pass in time for me to grace the doors of my employer with my bright, cheerful self at work...LOL) and ended up having to call in sick for the day out of fear of hurling on one of my coworkers or clients. The mystery illness passed as suddenly as it came on and I was able to make it into work on Saturday. So, when I went to fill out my sick leave request, I found myself hovering over the "serious medical condition" box and the "personal illness" box...I couldn't decide. Which WAS it? Had I just come down with a common stomach virus or was it the MS rearing its ugly head and taunting me again? How did I know? How could I tell?

Most normal people would have just checked a stupid box or flipped a coin, or consulted their Magic 8 Ball for an answer...the key word in that previous sentence is "normal". I, on the other hand, ruminated on the appropriate definitions and terms of "serious medical condition" and "personal illness" for quite some a matter of fact, I'm STILL ruminating!

The idea brings up lot's of uneasy questions for me...and the main one is, how do we know when symptoms are directly related to or caused by MS? Who gets to decide this? Our doctors? Our spiritual guru's? Our inner child? What are the criteria we use to judge physical changes in our bodies and what makes one symptom MS-related and another not?

My dearly beloved Always Really Nice Practitioner (ARNP) of neurology once told me, "BrainCheese, not everything is because of MS" as she tried to explain to me the dizziness I was experiencing earlier this year was most likely due to an inner ear disorder...maybe. And I am a firm believer EVERYONE with MS gets "normal" illnesses, too (like the Swine Flu, Ebola, etc...LOL) just like relatively healthy people. Sometimes it can take me a while to really understand a particular symptom has nothing to do with MS and I need to address it from a non-neurological approach. And still other times, it can take me a while to really understand and accept, yes...this IS MS.

So, my question to YOU, my preciouses, is do YOU decide for yourselves what feels like MS and what does not? Which box do YOU metaphorically check (because I know no one else in the entire world is required to fill out such a bizarre form in their workplace!) when feeling ill? I need your thoughts do we know?

And while you're at it, what the heck IS it all about, Alfy?!?!....