Thursday, October 17, 2013

Never Never Never...

Got it.

It's the third Never that makes it so different, I don't know when or precisely why Winston Churchill had that saying, "Never, never, never give up" but I do know the third never makes all the difference.  I could ask my uncle, I bet he knows.  The last few weeks really that is all I have wanted to do, give up.  But I don't even really know what giving up looks like when you don't really have a goal.  It's the food thing.  I have gotten use to the fatigue, the rapid heart beats for simple tasks, the body aches that have greatly diminished, but it's the damn food.  The phrase doesn't really help me out to much when that's all I have done, is give up food.

Food for the soul, I remember those days.  People use to laugh at all I could eat, and I was never shy at a dinner party.  My goodness if I didn't have so many Jewish friends I think I may have considered converting after discovering that their Holidays are filled with the most amazing food, latkes, brisket, liver pate with little pickles and eggs on them, matzo ball soup, alright you can have your gefilte fish.  It's one of my first memories of having difficulty eating something, I was at my friend Sandy's and I normally eat latkes faster than she could serve and I noticed I felt a bit funny after having one.  So the next time I thought since I had a bit of trouble with some apples it was the applesauce, no big deal what's better than sour cream?  But then it happened again, that was my first little hint that soon potatoes and apples would be off the menu.

It is daunting to not be able to eat with ease and pleasure anymore.  And now as I have hit the 40 and fabulous I seem to be in possession of what ironically is called a "muffin top" combining my restrictions on food and my restrictions on exercising I fear that may be here to stay for awhile.  The caged bird, once again, I know why you sing.

So on days when I do feel like giving up, giving up writing, giving up trying, giving up really everything I think of the third never...and somehow, someway the third one helps me carry on.  I figure someone who decided the third one was necessary must have been in pretty dire straits...and I will be googling Mr. Churchill the second I publish this post and gain some knowledge that I clearly left behind...or call my Uncle for the cliff notes.

Wednesday, October 16, 2013

My Wild...

Into My Wild
"Will you take me as I am?  Will You?
Joni Mitchell
Quote from Into the Wild - By Cheryl Strayed

As I looked out over the golf course, my eyes seeing the tiny speckled stars I have become accustomed to, seeing the world as it's parts rather than their whole; separated, detached, moving, unsteady as my body so often feels.  I leaned against the two chairs and as my gaze drifted towards the foursome on the putting green I wondered if I would ever get to experience this world as a healthy person again?  That thought struck me without malice or jealousy, anger or bitterness and that made the question not feel so bad after all.

I was simultaneously cloaked in comfort in knowing at least their was a time I had.  I had been given the opportunity to live a healthy life much longer than many and I was still here.  I vowed once again with shaky determination to do my best to stop fighting the current of reality and find a way to create and mold this new experience as that, a "new" experience of what it takes to live without so many pleasures and eases I was once granted and dove into.  Trying again to find what I have gained in what often only feels an endless pit of what I have lost.  Looking at it as that, an experience with value and merit.  It is my experience, one I push and fight and get so angry at the constant unknown that I have separated "myself" from this illness.  I want nothing to do with it yet in that at times I then want nothing to do with myself.  I keep waiting and waiting for this to get better and begin my life again, and yet this is my life and somehow I have purposely forgotten that.

This week my experiences included two trips to Mayo Clinic for a minor test that turned out fine.  Yet two days of three flights of stairs due to my claustrophobia had my legs feeling like they had run a marathon.  An injection into my lymph nodes into my groin, the 10th I have had.  One blood treatment, one blood treatment that wouldn't work because I was too dehydrated.  An IV push of minerals that made my face flush and my body hot and yet I was tethered to the needle so my doctor and I discussed the "Good Wife" to distract myself.  My experiences included my 500th ham sandwich and mundane spaghetti with meat sauce.  A trip to the pool that I prepared for with the precision of an day long outing, yet I was in the pool no more than ten minutes and paid for it with achy exhaustion the next day.  A moment where I couldn't take it anymore, couldn't take one more second of every little thing being so hard so I took a 1mg of Xanax to let my body take a break from it all and so grateful that I am not an addictive personality that I can have those moments of repreive.  And a head so foggy at times I wonder if I am really talking...

I have done all this while finally having enough energy to begin reading, Wild, From Lost to Found on the Pacific Crest Trail by Cheryl Strayed.  I thought in reading it I would feel more lost and alone myself, so wishing that I could do something drastic and life changing to "change" my life...but those of us with a Chronic Illness or locked in circumstances beyond our control know that is not a choice we have.  In my "old" life it was.  That's exactly what I would do, I would "escape" to a different scenery, and oh how thankful I am that I did it then when I can't do it now.  But in fact it was this book and her words that made me feel more not less impressed with myself.  Her struggles on that Trail are the struggles someone with CFS deals with every day, yet unfortunately we can't end our journey after 1000 miles.

In her journey of "packing" her "monster" pack, reminded me of how I carefully "packed" my purse and accessorized myself for courage as I took off for the pool.  Her aching body and tired limbs I know so well, yet unfortunately as her journey progresses she gets to see her muscles and body become increasingly stronger, but without her strength of mind she wouldn't have gotten that far.  She does it alone, and despite strangers and friends that help along the way or helped her get to the idea of the trail, illness as I said many times at the end of the day is yours alone.

My confidence has wained that I will ever be able to "prove" myself in such a daunting task, and yet who are we kidding I wouldn't choose the Pacific Coast Trail to do it, maybe a "trek" along the promenade in Nice, but somehow in reading this story is what brought me to that thought in my head, I may not ever relish in this world as what use to feel whole but that doesn't mean I am broken.  I must learn to take myself as I I am right now not as I hope to be.  And like Cheryl, my path has strayed, a diversion I would never wish on anyone but it' is my diversion and I will find my way.

Stray.."or go beyond established limits.."

Wednesday, October 9, 2013


I am so lucky to have such a beautiful view...amazing this was all in one evening...

Sunday, October 6, 2013

What the Fox Says...

Adventures of an Incurable Optimist
Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it.
Michael J. Fox

I stumbled through Michael J. Fox's return to television where we were continually taught the "lesson" and acceptance that we have no control, and life gets better when we acknowledge such lesson.  Over and over and over again in a quirky thirty minute poorly written sit com the actor kept reminding us that we can't control what always happens in life but we can control how we handle it, got it loud and clear.  The thing is, on an interview Michael J. Fox discussed how he realized he could continue to work as an actor as long as that actor had Parkinson's.  This is the sad truth when you take off those rosy colored "you can't control life just go with it" glasses, most people aren't actors and if they get Parkinson's they can't re-write their career into a part that does.  This ability to care for and provide for your family or self is one of the most devastating parts of chronic illness, and for the majority of sufferers the illness robs the ability to continue what brought us some sense of control and security, work.

I can't always control my body the way I want to, and
I can't control when I feel good or when I don't. I can control how clear my mind is.
And I can control how willing I am to step up if somebody needs me.

Michael J. Fox
That is how I feel lately, such loss of control with illness, and more importantly the inability to wonder if necessary could you possibly support yourself?  Last week I found out my regular help was giving me her two weeks notice due to some family concerns.  I was paralyzed in fear.  The immediate problem was magnified that I had the dates of her return from her vacation mixed up, so my parents had just left, my best friend was out of town for another week, my other dear friend broke her leg and is bed ridden, all my "people" except one were gone...and I couldn't do it without them.  COULD NOT.  Not, would not, not sure, not oh it will be difficult, no, could not period.  That is a feeling that will drop you to your knees and feel like a lost child in the middle of a city.  The reality that my mom needed to turn around and fly back out to Phoenix is a big mirror of loss of control.

Looking Up - Amazon Link
That email of resignation exploded all my fears with this illness, the dependency.  I never can get myself far removed from the financial constraints this illness took on, especially the help.  So it was a double edge sword, not only loosing the person I trusted and that I felt emotionally comfortable with, but it was getting hit with a Mack Truck of reality how much I required and needed such help.  I have been forced to let go of much control and have learned many good lessons out of it's necessity.  However, unlike Mr. Fox, we can't insert ourselves into a new script that fits our new circumstances.  We re-write the script, and some days we write it better than others.  However, some if it must lie on the cutting room floor, with only hopes and dreams of a re-write.

Now please, do not for a moment think I am a MJF hater.  Quite the opposite, I actually sat through both half hour episodes of misery out of reverence for him.  I even cringed wondering if he was cringing too at the final result, here I am feeling bad for him, because he is so much better than that show.  

However, as all of us know suffering traumatic illnesses acute or chronic sometimes the "lesson" from someone in a different stratosphere of wealth and opportunities in the career he loves just feels a bit forced.  He taught me much more by teaching nothing in his guest episodes of the Good Wife, he showed up.  Glennon from Momastery uses that term a lot...he SHOWED UP.  That was the vulnerable first step exposing himself as an actor playing a lawyer so shrewdly.  Showing how he made his lemonade out of lemons.  He taught me more in his quest for Happiness by traveling to a remote village and again experiencing the unknown.  But that half hour of "isn't it just aw shucks I have Parkinson's but look how I can't control that and am still HAPPY" just made me depressed.

I felt robbed of the opportunity for MJF to make something real, and funny and inspiring.  The viewers lost the arc of the journey and they fast forwarded to this "inspiring" end, but it left me feeling quite uninspired.  If he just wanted to be funny, just be funny.  If he wanted to not make it about Parkinson's then don't make it about Parkinson's.  The thing about the Michael J Fox show is it in my opinion had little resemblance to the truly inspirational Michael J Fox.

The last few days I have been clothed in a cape of numbness and on days like these at some point you give in.  You decide to be grateful for a sip of Coke and the crappy ham sandwich that you have eaten like a prisoner on a bland routine diet.  You find a way in all that is lost to at least wash some pans, make a batch of cookies and be grateful that you are not in bed, even though you don't feel grateful - you fake it.  You breathe.  You let go of the disciplined control of glass half full optimism and hope and you sink into the loss of control and the dark days it brings, knowing tomorrow there is always hope and today well today it's okay to not feel it.  It is in these dark moments of loss I feel a quiet kinship with Michael J. Fox and thankful that there are loads of eternal optimists to turn to on our half empty kind of days and for that I will continue to listen, learn and be grateful to what Mr. Fox says, I just probably won't tune into NBC to hear it.


Bhutan...hopefully still obtaining Gross National Happiness
I see possibilities in everything. For everything that's taken away, something of greater value has been given.

Michael J. Fox
What does the Fox say?
Check out the viral video that will make you laugh and get in your head as seen on Ellen...

Saturday, October 5, 2013


Sleeping Beauty and Ariel

My mom told me the other day she went over to my sister's before they were all headed out to dinner and she was wearing a purple and black leopard raw silk scarf of mine (side note I had a scarf phase, enough said) anyways my niece commented, "aren't you fancy fancy".  My mom replied that the scarf was actually mine and she wore it to feel a bit closer to me.  My niece then began to pretend grab all the little spots, and when my mom asked what she was doing she replied, "I'm taking all of the LOVE off of it because I miss Heather too!"  

Before I left my niece gave me those little figurines in a handmade pouch to take with me.  She told me it was so I had a toy to play with while we talked on the computer.  We only did that once and instead they have found a home in my purse and I take the LOVE from them.  

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