Wednesday, March 31, 2010

Not Regret, but Fodder for Dreaming

Attention to health is life's greatest hindrance. — Plato

I think a high school journalism teacher, or maybe the owner of a bed and breakfast, or a modern dancer with muscular least I like to dream about the person I would dare to become if I could crank back the time table of God's universe, and, knowing what I know now, go back and live my life again without MS.
What choices would any of us make, if we knew for absolute certain sure that at a certain point our lives would be subsumed by a debilitating illness. On one hand, the sensible decision I made to go to work for the state gave me the health insurance that provided top-notch medical care early on and the disability benefits that provide most of my livelihood today. It was a deliberate choice to leave behind my late-20s BA in Journalism and my dreams of working in newspapers and magazines and go "backwards" into secretarial work simply for safety and security.
If I had known that I only had 10 more years to pursue a profession, would I have, could I have found a way to overcome the practical voice that led me to a safe job and instead pile my family into an old van and head out and see America and then to keep driving until our tires touched the southern edge of the continent. Then, of course, write a book about our travels that would fuel us on to further adventures. 
If I could have peered through the murkiness of time and known that all of my dancing would be over before I was 40, would I have danced more? I say I miss dancing, but in all honesty, I didn't make it a priority or, a risk back when I had a choice. In my hometown, at countless summer music festivals a big part of the entertainment is watching folks in wild outfits twist and dive with arms outstretched and heads tilted back. Seemingly one with the music and seemingly utterly unconcerned with social norms. I have always secretly envied them their bliss. 
I am held tightly by the bounds of doing things that are safe and guaranteed not to draw attention. I can clearly see the irony in my whirring, twisting, ever so un-missable wheelchair. No matter what, I can no longer fade into the crowd. Knowing that this is my now and I live life right smack dab in the center of a spotlight in a world filled with the walking.
I never wanted to be a rock star or an astronaut or a beauty queen. Fame hasn't cast a spell that held any allure. I have to admit that having enough fundage to say airily that money doesn't make one happy, is a problem I would like to struggle with. It isn't about regret, more a place to dream. 
I often remind God that I would like to be a dancing girl at the gates of Heaven and I want the entire enchilada: cymbals, dark purple veils, and bells on my toes, as Mary Mary sing so well, "take these shackles off my feet so I can dance."

Friday, March 26, 2010

Morning as Metaphor

These past few weeks have been a tangled ball of stuff that seems to defy my efforts at untangling. A mix of scattering of highs, lots of lows with occasional trips into the basement and lower to the dungeon. Fatigue and pain seem to be constant, while my emotions jump unreliably all over the weather map. It is hard to know what to write about since I can't seem to settle comfortably into one spot.
I was determined this morning to do one positive, life affirming thing. Something more than brushing my teeth, slapping on deodorant, and, on a better day, changing from jammies to sweats. Something more than endless games of solitaire, scrabble, and lite reading. I am planning to do a surface upgrade to my kitchen so that it is finally, once and for all, accessible from my wheelchair. This involves rearranging, removing the bulky island, and installing a new wheelchair friendly work area. Not that I am planning to do any of the work myself. Those days are long behind me.
Back to this morning. I made rough measurements, which took me all of 10 minutes. Cleverly, I measured one tile on the linoleum, then just counted the tiles. Then I climbed in bed, opened a spreadsheet on the computer, and entered the data. Now, the fun part, I thought. Scoot around on the internet and shop for ideas and prices. Up to that point, I had spent all of 15 minutes, at most. Sitting and staring at my computer I had to face the fact that I was too tired. Too tired to surf the internet. Ridiculous.
The story of my morning illustrates why it is so damnably hard to get through my life. I am barely 45 and apparently my days are reduced to a narrowly defined set of activities. Yes, sometimes I still push past the boundaries of advancing MS. But, when an overnight away from home sends me into a 5-day tailspin and counting linoleum floor tiles taxes my brain into mush, it is difficult to want to, let alone try to do more.
side note:
Friends & family who read my blog. I know my posts lately are tough to read. I am not going to apologize for that. This is a place where I need to be open and honest. Thank you to all for hanging tough with me. One thing faith has taught me is that a fair amount of fortitude is necessary.

Thursday, March 18, 2010

Quite a week

Gather Ye Rosebuds

Last Friday evening, the 12th of March, I was sitting in the middle of a birthday party surrounded by some of my dear friends and family and it was for me! Cake, Food, Flowers. Really, Really wonderful. The day before, my actual birthday, my hubbie woke me up with a handmade latte, a pile of presents, a call from my son who is 3,000 miles away and as the day progressed my father brought lunch over and then whipped me at several games of cards. At the close of the day my brother and his son called from Vermont and sing me a medley of birthday songs. My nephew is a young lad of 7 and his sweet true voice sounded like heaven on earth. This wasn't enough celebrating, on Sunday my sweets and I were scheduled to go on a little trip so I could spend time with another close friend. Boy, do I love everything about birthdays. Even getting older ain't so bad.
So, imagine my dismay when on Saturday, first the old man, then me a few hours later found ourselves in the midst of a bad bout of stomach flu. We cancelled our trip and hunkered in. {every couple should go through the stomach flu together=once}  By Tuesday he made it through a half day of work. Unbelievably I was still sick to my stomach and had developed a raging head cold that seems more like a virus. I have a temp, a rash, a plugged head and on and on and on.
Oh, did I mention that all this illness has made my MS rear its ugly head. 
I am realizing in this dramatic juxtaposition of events: from the heights to the lowest cruds in just a few days that I need to dig my toes into the warm earth of good days. Turn my face to the sun when it is shining. If Thursday and Friday were my last days on this blue ball, could they have been any better. Don't know how. I am surrounded by people who show their love in so many ways.
So, maybe this endless flu is teaching me to revel in the less grand moments. Everyone should celebrate their birth, being alive, and being loved. Everyone should build a life full of living.

Tuesday, March 9, 2010

Finally, a Use for Something Useless

As much as I love food and all it involves; the recipes, the shopping, the planning, the preparing, and the sharing—I have never understood Aspic. For those who don't know, aspic is, for all intents and purposes, savory Jello. So, with Aspic, one takes bits of veggies, cheese, and meat in some combination and suspends them in meat broth that is solidified with gelatin. I retain a clear mental picture of making my way down a fancy wedding buffet line and spying an entire beef tongue magically rolled out in a loaf of jellied veal juice surrounded with olives, hard boiled eggs, and other dibs and dabs. And, don't get me started on Jello. It is close to the top on my list of least favorite foods, and it certainly shouldn't contain anything from the savory side of the food line. I was offered more types of Jello during a year of MS Novantrone chemotherapy than I can count, but the lime green one with cheese, peas, and lettuce remains unforgettable.
Finally, I have a reason to be appreciative of my experiences with Aspic, Jello, and any other gelatinous foods. At least in an illustrative sense. You see, fighting my way out of the rough spell I am going through feels like I am trying to swim through a sea of Aspic. I regularly encounter chunks of good solid things that should be enough to propel me higher, but then I find myself still stuck and sticky.
Shouldn't I be able to count my blessings and dig myself out of this funk? Things, in no particular order, like:

  • As a mainstream American I enjoy more 'stuff' than something like 96% of the world. House, medical care, groceries, cars, etc.
  • It is my birthday this week and I am counting on friends, family, presents, and cake (Yum, Cake!)
  • Spring is springing, the sun shines, and my street is wearing a drift of pink petal snow from the cherry trees.
  • Good books, music, and movies
  • My impatient, bossy, snoring dog
  • Wise counsel from several sources
In spite of or maybe outside of all of this blessing this pervasive blahness remains. And, as much as I am perplexed by aspic and averse to Jello, I would really like to find a way out of this.