Men in Tights

"He's someone you could imagine capturing a bear with a butterfly net while having a refrigerator strapped to his back." THAT was a description a good male friend of mine once gave of my ex-husband, which is a vague way of saying that my ex was very powerfully built, and it serves as an introduction to what I'm about to say next. My ex-Y was a catcher in baseball. (That, and both a center and linebacker in football.) He played little league and high school ball. If not for bursitis in his right elbow, something that hit in his last year of high school, I'm certain he had enough talent for the major leagues. That is to say, I never saw another catcher like him except in the majors.

Tabatha's Cat-O'lantern

What does this have to do with Halloween? Well, I'm getting there.

The Only Way Out Is Through

Yesterday on Facebook one of my Facebook friends--a fellow ME/CFS sufferer--announced that she is no longer going to have hope that a cure for what ails us will be found. Tired of dashed hopes she was committing from that day forward to live in the present moment while appreciating every minute that she is able. I concurred with her sentiment. After a lifetime of illness, it is difficult to put faith in hope. For me at least, it is better to be happy in the moment and be open to what life brings.

Homecoming

One night last week, here where I live in the Shenandoah Valley of Virginia, the nighttime temperature dropped quickly, dipping to 37 degrees overnight. Although barely fall, I could feel winter in the air. I happen to love the winter months--that is, when I am not totally homebound as a result of a heavy snow. (I am unable to shovel the snow from my driveway because I am disabled with ME/CFS.)  I know it's a little early to be talking about snow, but I blame the quick change in weather.

I love snow. I miss making snow angels, snow sculptures, and walking at night while watching the snow falling by moon or streetlight. My orientation toward playing in the snow did not change as I aged, although my willingness to spend hours on end in the snow did. As I dragged my trashcan up my steep driveway in the cold, thoughts of snow reminded me of a time when I could spend hours on end sledding with friends. Next thing I knew, I was traveling down memory lane.

T.H.I.N.K.

::NOTE about this week's extra essay:: Today marks the day when some are responding to the call of M.E./CFS Blogger Nation to blog about M.E. Specifically, the theme for today is "What is ME/CFS doing to you, How are you affected day to day, and What are your hopes for the future?" This essay is a response to that call. If you're not in the mood for serious or don't want to hear the answer to the questions posed, please skip this essay.

Many of us in the ME community experience friend and family flight when we become disabled with M.E. Let’s face it: ME is difficult to understand. We struggle to comprehend what is going on with our bodies and to cope with the cognitive losses. Even the people who live with us and see its impact on a daily basis have a difficult time understanding the often-varying nature of the illness. And so perhaps it is unreasonable of us to expect people who do not live with us to take the time to learn about our diagnosis. (Heck, our partners themselves may not care enough to take the time to learn about our illness of possible treatment options.)

It would be nice, however, if people we care about had the common courtesy to ask us how having M.E. affects us before making pronouncements about why we are sick or whether we are truly as sick as we say we are. I’ve asked around and so far only one person with M.E. that I've spoken with has had anyone ask her about the impact of M.E. We’ve been reassured, however, many times over by people who, having learned of our illness, say, “Oh, I get tired too.” (Right, and you recover, but not because you are morally superior and we are morally inferior or psychologically crippled.) We have also received all sorts of unsolicited advice, most of which probably stems from a cursory glance at an article about some piece of crap research on M.E. (Meaning, research with serious flaws in sample selection and/or experimental design.) 

What Am I Practicing?

Sometimes when I am going through a difficult time, I find the need to write down what I know about whatever to stay clear about my intentions. When my ex and I were going through our break up, "What am I practicing?" was written as a guide for my behavior through that difficult time. I posted the guide in my bedroom, on my bathroom mirror, and on my refrigerator. I may have also carried a copy around with me in my purse (um, I'm pretty sure I did).

I can't say I always practiced what I preached to myself. Indeed, there are things that I would undo if I could even if what I did, I did out of my highest truth. Our breakup was traumatic for me because I was very ill with ME/CFS--very much in need of my partner's love and support. Suffice it to say, it became painfully evident over a short period of time that I was wrong in believing that I was as deeply loved by my partner as she was by me. I can say, however, that despite feeling traumatized, I gave my best given, what was for me, head-spinning circumstances.