Monday, June 20, 2011

It ain't easy being Zen -

First of all, I have had the relapse to end all relapses the past month.

I will say if I was watching this happen to someone ELSE I'd say the following.

"Good grief, of course you feel wretched. Within the past year had kidney stones, sold your family home of 2o years, moved into an apartment, gotten your heart ripped out through your nostrils by ... oh never mind, and then spent the winter having five more kidney stone procedures with recurring ER visits. THEN w/in three weeks you saw your traveling musician perform and went to another son's college graduation in another state (literally.) Who do you think you are? SUPER HUMAN? Uber momma? Yeah? Well, you're not. You're a very sick woman eking out an existence on disability whose life has been turned upside down with No Sign of Rt Letting Up Any Time Soon. I"m putting on some tea and getting some scones. You. DON'T MOVE A MUSCLE. You just put your head back down on that pillow. NO. Do not move. I'm going to wash your sheets, empty your cat box, and stock your fridge with healthy "grab and go" food, and what. Do you want me to do your nails? Because I will!"

BUT ... of course since I AM that woman and can only summon up the strength for the occasional cup of tea I mostly sleep on ... well, you just don't need to know that. Yet, I really DO think I should be able to care for myself the way I'd care for others. But it's not happening. Not any time soon if any time At All!

I think it's all very well and good to Live Zen, but when the present is exquisitely painful (literally) what's so wrong about not being there? What's so wrong with zoning out in a haze of pleasant "healthy" memories? What's so wrong with recounting the loves of ones's youth? Or the children that are now adults? The gardens once sooo well tended and planned for all winter long. What's so wrong with that? What's so wrong with seeing a picture of a pasture in the mountains and envisioning oneself stretched out there under a warm (no humidity!) summer sun? Imagining not yet conceived grandchildren? Imagining strong and healthy offspring meeting their personal and professional goals. Can a disabled momma ask for more? I think not ... and it's pleasant to think about. Beats the bejabbers out of wanting to chew off one's legs.

I'm tired now. Ok, I'm tired always but I've been in bed for three hours post sleeping pill and have yet to fall asleep. Of course I'm typing and a cat on my shoulder isn't helping either.

So goodnight, Larry. Goodnight, computer. I'm going to shut out the lights now and do some not sleeping. As I day dream about raising sheep (something I thought I might do post child rearing) I will pay special attention to my ceiling fan and count it as Zen.

Sunday, June 12, 2011

Day 2 - Mindfulness

Exhausted beyond all belief I took the concept of "mindfulness" to heart today. I found that choosing to focus on some sensory moments in the present helps me not worry about the future as well as not focus on the very present negative.

Some of the things I focused on today include ...

Vito's smile
Larry's fur
Two unnamed yet familiar behaviors of my sons
The taste of fresh strawberries
My DILs nail color!

Saturday, June 11, 2011

Day 1 -

Inspired by Toni Bernhard's "How to Be Sick" I am going to attempt a month of "Zen Illness." Or, since it seems a little bit presumptuous to assume I'll be "down" for the next thirty days ... I'll just have a Zen Month. Today is Day One.

Today I will strive for mindfulness. Does this mean I have to pay special attention to all my various symptoms? I think not. I think today I will be mindful of MY actions.

Currently I am dressed and yes ... in bed with my laptop. This morning I went to pick up my first "share" of Fat Blossom Farms' organic produce at the Farmer's Market. I'm no longer a fan of hustle and bustle OR crowds so am thankful that there was very little of either. I was able to quasi quickly find the stand, get my week's share, and purchase three peonies white peonies. Peonies are one of the plants I miss MOST from home. In fact, any home in which I've lived had white peonies. Martling Avenue. Greenbrook Road. ElDorado Drive. 14th St. 11th St. But not now. Not this apt.

I thankful for this time in my tiny apartment as one "life" is wrapped up and another about to launch. I'm thankful for this time to learn what I love and what I need. Going forward, both literally and figuratively, I hope to have only those items that I need, use, and love.

All my produce was loving packed in plastic bags and is now in the fridge: garlic scapes, mustard greens, spinach, salad greens, and radishes join my asparagus. On the counter are the heirloom Sparkle strawberries I'll share with some offspring tomorrow, minus one. (Yes, one son and one strawberry. I guess I can say I ate one in his honor ... a snawberry boy, in his youth.)

I am going to attempt to tidy up a bit now and make myself some sautéed veggies!

Friday, June 10, 2011

Taking a stand ... WPI

I've been unwell since I was a child. Certain people liked to call it "stress" and look the other way. Unfortunately, I wasn't one of them. It was MY body doing all that misbehaving.

Now, at 56, I have been decidedly ill for a decade and disable for four. I was willing to put up and shut up as long as I could work and support myself and my children. But afterwards? When that was no longer capable? All my efforts, ALL MY EFFORTS went into figuring out what was WRONG with me.

Twenty three doctors later I had a definite diagnosis. Chronic Fatigue Syndrome. Ironically, the person who diagnosed me FIRST is a long time close friend and a nurse at my local hospital where they don't "believe" in Chronic Fatigue Syndrome. Yet magically. all those with with it get sent my way. To quote Mary Tyler Moore, "First, You Cry."

But I digress. I am tired today and my mind more than foggy. It's been three days since I've been out of bed except for the necessities of life. Today I really CAN'T tell my story. Literally or figuratively.

What I can say with fierce determination is that while I KNOW I will die from ME/CFS complications I will NOT go silently into that good night. Nor will the other millions who share in this hideous invisible disease. WE may be invisible, but our words are NOT.

TAKE THAT, CDC. TAKE THAT, NIH. We will not be silenced. Your atrocities will not go unknown.

Thank you, Whittemore Peterson Institute and staff for your commitment to your own families and the international family of ME/CFS. Thank you for you going where no one has gone before. Thank you for being willing to fall down and get back up. Know there are millions cheering you on from their beds. Millions praying for you by name. GO YOU. GO US! To life, to life ... l'chaim.

In loving memory of those who have already lost theirs ... I miss you Dr. Sharon Kirk. I miss the you I never knew, I miss the you I knew so briefly, and I miss the you that held my hand from the other side of the country and taught me how to begin to navigate this "life."

A wobbly walk on the Zen side -

Have you noticed there are more letters in the word "chronically" than in the word "living?" More letters in the word "chronic" than in "life" or even "living?" Yeah, well ... that's because it's out of whack, out of balance, soooo not T4 and way more lopsided than I had ever intended life to be.

Although decidedly an introvert, I am sooo not zen. Not. Zen. At. All. At least it certainly isn't just my nature. It fact, it may be the antithesis of just my nature which is quiet, a tad on the perfectionist side, opinionated, feisty, and mostly stubborn. Sometimes I think the "quiet" and "stubborn" parts of me are what's going to get me through this alive, so to speak. Meaning spirit intact. It's taken four years but it's finally starting to dawn on me I have no control over my body whatsoever.

Who took human biology? Hands, please? Anyone see the amazing "Human Bodies" exhibit? I did both. Yes to biology, and yes to the exhibit (which was far superior, btw ... sorry, Hope College.) As I lay here quasi flat on my back in bed for the third day in a row I've been entertaining myself with thoughts of Roseanne Roseannadanna. Recounting skits to Larry, as he alternately snores at the other end of the bed and shares the pillow with me. Who knew cats could be therapy animals? The irony that Gilda Radner died of cancer, is not lost on me as we PWCs are usually taken out young by cancer or heart disease. Or suicide. Why? Yeah. Back to Roseanne.

Do it with me now. Widen your eyes, look indignant and say, "If it's not one thing it's another." Now scrunch your eyes and hold your thumb and forefinger close together ... you know that little teeny tiny gland in the center of your brain? Yeah. In the center. (Now point down straight into the center of your scalp.) Yeah. THERE. Waaay down in the middle, sort of like in the center of the earth is a teeny tiny gland called the hypothalamus. It's the size of a pearl. A PEARL. Small enough to hide w/in the shell of a mollusk (I love that word.) Yes. Smaller than your baby toenail. THERE. Mine is broken. Smashed beyond all recognition. Switchboard malfunction. Meltdown status. Yup. My body can no longer regulate its "stuff." You know ... heart rate, BP, body temperature, hormone production. Little things like that from that little gem of a gland.

This makes life fairly erratic. Really. I mean when the BP tanks to 80/40 and the heart rate soars to compensate, one sits down ... if one hasn't already passed out. Kind of takes the spontaneity right out of life. Or not, depending on one's vantage point. There are two ways of looking at life: take it or leave it. And truth be told, a lot of those with ME/CFS choose to leave. Me? I'm staying as long as I've got a choice in the matter. Which leaves me with another choice. Do I live in a state of perpetual panic? Or not. Is there another choice? REALLY?

Well ... turns out there is. Having spent the past four years of disabled life trying to regain some control I'd have to say I think it's as good as it's gonna get in those terms. I've been granted SSD, have a pittance of LTD and am able to fake a "lifestyle," so to speak. Although it is certainly not what I would have chosen for myself, there are a lot of things about my life I wouldn't have chosen when I was healthy! But I didn't have control over those things either. Nor could I gain it ... no matter how hard I tried (AND I TRIED!) So the issue of life, du jour, really isn't about being able bodied or not, it's about CONTROL. I have never wanted to control another person's life ... just my own. Really, my own was plenty for me. I've been able to make choices that have focused my life in one area or another ... giving it direction, but not control.

If I had been in control I would have said to my life:

"You may not put in my foster care."
"You my not put me in said adoptive home."
"Universe? You may not hurt my children. Teach them, but not hurt them." (Yes, when I was a SAHM my children WERE my life 100% of the time.)
"HUSBAND? You must stay and work on the marriage. Must. Go. To. Counseling. Together." (Yes, when I was married my husband WAS my life + the kiddos.)
"Former bosses? Ixsnay on the icromanagementmay. Really." (No, I did not want their jobs, I just wanted to do my own, thank you very much.)
"Students? Become enchanted with learning. Just try it for a day. Really. It's contagious." (Again ... my job.)
"Parents of students? Look me in the eye ... THEY are the children. YOU are the adults. Snap out of it." (Again ... my job.)
"Body. You may age, albeit gracefully, but you may not decay. You may not fail me. You MUST keep me going."

To all of the above the Universe said, "Good luck w/that." And kept spinning.

So if I surrender control do I surrender everything? Have I lost everything? Have I lost the proverbial "it?" And to whom or what am I surrendering? God? GOD!? Dude, are you like angry at me or something? Did I do something HORRIFIC prebirth that required such flagrant disrespect of my humanity? And is that really the tone I need to take w/you? I think not.

Because I know that's wrong thinking. God loves me and all the other humans scurrying to and fro. Really. REALLY. While I'm not certain He's a FAN of what's going on down here on planet Earth all the time, He's God enough to stay out of it when He should, and He does. God is a fan of Free Will.

Yes, thank you ... I'll take those reins. Even while shackled with ME/CFS. Yes, please ... I give up. I'm ready not to be angry all the time. I'm ready for peace. I'm ready not to wake up with my heart racing in fear what the day might bring. I'm ready for peace. I'm ready not to be on the verge of bursting into tears almost Every Single Moment. I'm ready for peace. I'm ready not to hide behind West Michigan's version of Christianity and expand my "God Box." I'm ready for peace. Even if that means no longer being on the verge of tears, but weeping.

For the next 30 days I'll be taking a wobbly walk on the Zen side. Breathing in and breathing out. Expanding my diaphragm. Envisioning my cells NOT containing multiple viruses. Envisioning health ... both physical and mental. Transporting myself from the confines of my bed to my almost-sort-of-maybe-next-year back yard/woods where I can close my eyes and listen to the leaves. Or not. Although climbing the dunes is currently not possible for my body, it is for my mind. Perhaps I'll start with the clay dunes of my youth on Martha's Vineyard. Then I'll scamper up some old friendly mountains in the Adirondacks and imagine life from the top of their world. Then, when I'm ready ... I'll come back "home" to MI and head for its sandy shores. One day at a time, one hour at a time, one minute, one breath.

And repeat.

Walk with me?