Wednesday, September 30, 2009
Wednesday, September 23, 2009
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 flu...in 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"...in 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"...it 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
Friday, September 04, 2009
Tuesday, September 01, 2009
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 year...my 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 leave...my 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 weeks...it 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 time...as 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 this...how 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 here...how do we know?
And while you're at it, what the heck IS it all about, Alfy?!?!....