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

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, 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.

Michael J. Fox Foundation Website

Beauty

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...

LOVE

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.  

Easy...

August 1st, September 3rd and September 13th 2013 three days, three amazing days.  My old definition of an amazing day looks so far from what is now amazing I ask myself which version is truly the blessing?  Kind of one of those "things I wish I would have done before I died" type lists people tend to share...the things is with a chronic illness those "little stop and smell the roses things, well you stop.  I would love to say the simple things that get magnified are the biggest blessings, until the trade off for noticing these things is trading in your independent life for a dependent one.  I wrote this blog a few days ago and wanted to add some pics and look it over, and then yesterday happened and I read this and feel like taking the computer and chucking it across the wall and watch it shatter into pieces to match my despair last night.  However, I will "soldier on"...which that term popped into my head after reading this fabulous post by My World...  So here we go...back to the original post and tomorrow will catch you up to the reason for the Apple hitting the wall.

Amazing awe inspiring days before my health declined insisted of something "worthy" of such a title, a great concert, a fabulous party or a city or country I had never experienced and may never again.  August 1st, September 3rd and September 13th were amazing in their simplicity of an extraordinary ordinary day that had an ease that I so rarely am granted.

This illness as I have at nauseam repeated and have read over and over from other sufferers lies in the disbelief of what is really even going on.  I also notice that we struggle constantly with explaining what this illness feel like and I realized last week after the 13th came and went and the 14th landed me crashed in bed it can be described as the reverse of the beginning of a cold or flu.  Imagine when you feel a cold or flu coming on; first your head gets a bit foggy, your brain doesn't feel quite "on" and your body just isn't yourself.  Then perhaps it gets worse, and the simplest of tasks get overwhelming, so you hydrate, maybe take a few Advil and then slosh through another day.  Finally, you decide that this little invader has become too much to handle and you succumb to bed.  You may be a bit crabby than normal or needier, more sensitive of mind when the body hurts.  So you watch some movies lie around and then begin to move to the other side of the bell curve - recovery.  And all of a sudden, without much warning as a switch has been turned off you look around and take a deep breathe and you feel like your old self again.  That is the course of an acute illness, this illness takes all those feelings and you live with them every day and once in awhile like watching a movie backwards you are granted to Easyville.

August 1st and  September 3rd and 13th for me was a first class ticket to that magical land.  That ill feeling is normal and the reverse switch went off I felt like my really "old" self again.  Everyday stuff was just that, everyday stuff.  Easy.  That's the best way I can put it, everything was just simple.  Instead of swimming against the current without waking or doing anything differently the current changed and I was floating down the lazy river.

Seriously she would do better than Bethany...no offense Bethany

The most amazing best part of September 13th was the ease of heading down to my BFF's place of work.  The day prior it just slipped out of my mouth, "why don't I bring you dinner at the station?"  Even as the words came out my head was shocked that I even suggested that.  It meant driving a bit further than I have in months.  Entering the station where once behind the locked doors little magnetic security doors (which normally gets me tense) are at every turn.  The traffic which was increased by construction and a Brewer's game.  The normal list of hurdles to cross is so long they are hard to verbalize those were the obvious ones and as each one was jumped over I was truly a track star, clearing them with ease.

Yep the "oversized" not my most flattering

The worst thing about the entire day was that when we took some pics I realized my favorite "Mindy" sweatshirt made me look about 15 pounds heavier than I am!  Oh my goodness that was the worst part of the day!  My VANTIY the WORSE PART OF THE DAY...that is f'ing FANTASTIC!!!

The next day the spell vanished but I had these amazing days, three amazing days.  My doctor said she has seen this before with her chronic illness patients, that you begin to have these days so good so different than normal that you feel you dreamt it up.

I often feel like this whole thing is a altered universe dream and I am going to wake up and a version of that show "This is your Life" with some 70's game show guy in a bad tux will appear and in front of me lies...gift certificates to all my favorite restaurants that I bet have been missing me because oh have I missed them.  I use to be Queen of Take Out and Restaurants no one takes out from.  Many Bartenders in Phoenix and Milwaukee knew me not for my drink, but for my five star restaurant orders served in to containers.  Like a long lost friend that finally returned, Houston's, Bartalotta's oh have you been missed.

Then there would be this buffet of all the foods that I use to love that have been taken: apples, pears, nectarines, peas, carrots, potatoes - mashed, au gratin, baked, double baked, avocados, nuts, bananas - okay you can keep the bananas...

The next table has plane tickets to all my favorite places that I dared not dream I would visit again and some new places to discover. It just goes on and on of all the amazing things I miss and push deep down and make a conscious effort that missing is just wasted energy.  But then at the end would also be a little video of all the absolutely ordinary extraordinary days that maybe no one around me even noticed how much they filled me up.  Noticing the extraordinary in the ordinary like September 3rd 2013 being well enough to watch my niece head off to her own amazing adventure - kindergarten.

joy

And I may look back at the smorgasbord of things that I desperately have missed or more importantly missed the easiest of their attainability but then I would look at myself at 8:15 am holding a cup of coffee and giving my niece that big hug and the deliciousness of it that filled my heart not only because of the excitement of her new adventure but because I was able to make it and that buffet behind me doesn't feel so powerful anymore.

I still feel strongly that I never needed an illness to show my the specialness of moments or the joy in the everyday, but there is no way to deny how much illness heightens the intensity of the every day when the every day that normally is so hard takes it's grip off an gives you some moments of ease rather than dis-ease.

I have returned to Phoenix with additional protocols that we are trying in hopes of breaking the glass ceiling towards further progress.  I am hopeful and I am tired oh so very tired and then I count my blessings and they go much deeper than August 1st, September 3rd and September 13th and I am humbled by this journey and so grateful for all that have chosen to join me.

Enjoy...David Wilcox singing You Make it Look Easy

Made it

Falling Asleep

Last night as my head hit the pillow at 9:30pm all I thought to myself was, "you made it."  As simple as that, the morning that found yourself so tired you shook, so hungry you were nauseous, so weak you had no idea how you would get through the day, you did.  I even was able to modify the back to school shopping with my friends daughter to turn into dinner at my house, movie and what better idea than to introduce and 8 year old to the joys of online shopping.  My mom had made some pasta with meat sauce and I had broccoli and luckily some cheese to add to the top for Kate.  Kate was chit chatting and asked me if I when I was little did I have names picked out for children I might have one day.  I thought about it and said, "no, actually I never did that...maybe that was a clue that I really never was going to have children." She proceeded to tell me that she wanted three girls, named, Hope, Faith and Skylar, I commented those were very good names.  As I pulled her dinner out of the microwave, I turned to her and said, "well, I can feed a child guess I wouldn't have been all that bad as a parent." She laughed, one of the few 8 year olds I know that would get the sarcasm.

We proceeded to eat and select a movie, I was vetoed by the 1972 Rescuers and we ordered Epic.  Then I made one of those oh so helpful brownie boxes and we "shopped."  Her dad and brother and baby sister came over about an hour and a half later and we finished the movie and he drove her home. As they left, I cleaned up the kitchen, took a shower, and got into bed and those words ran through my mind like a ticker tape...you made it.  I also felt an odd sense of belonging, thinking of how many other people were going to bed with the exact same thought.

I was trying to find a good "sleeping" photo and googled "head pillow"
and found this...made me laugh...seriously...

Molehill out of a Mountain

I have this thing that I have mentioned before that I often get commonly used phrases mixed up.  Not only that but I have been known to correct someone when they have correctly said such a phrase so convinced by my incorrectness.  But I digress, it has been hard for me to write lately.  There is this great analogy about the "Spoon Theory" and if I am not too tired I will google it and insert it, and I had this whole story in my head to relate this "Spoon Theory" to the irony that I was unwillingly the  receiver of many decorative spoons throughout my childhood because I mistakenly decided to "collect" them from all the states I had traveled, which brought forth my grandma deciding that I should "collect" one from every place she had begun to travel.  Needless to say I ended up with a whole lot of spoons from a whole lot of places I had never been while my sister got some actual cool item from such place.  What I wouldn't do for a few extra of those spoons now, because all I feel like I am doing is "paying Peter to buy Paul" or seriously what is that phrase, I'm not trying to be ironic here for the sake of writing..."rob Peter to pay Paul...? is that it?  Well, that's the gist, I need more spoons....and not this one...thanks Brooke.

The Spoon Theory

I have found with this illness that in the beginning I fought so fiercely I unwillingly gave it more power than it deserved.  And this is my point, sometimes you need to make a mole hill out of a mountain or you will never make it to the top.  It is so easy to have this illness take over everything about me, but my life must be more than this illness.  Sure, would I do anything to go back to the old way, but that is not an option.  Much like the stages of grief you begin accepting and that does not mean losing hope, it just means not constantly mourning what use to be.  The person who helps me here in Wisconsin, the same person who brought me all the boxes of brownies so I wouldn't run out, asked me if I ever get bored?

And I thought about it, because on one hand I realized what an obvious question it was, and on the other hand how absurd.  I answered the best I could, "that is a healthy person question."  Yes, I use to not really get bored, I use to get frustrated or lust after all the things I could be doing rather than sitting here in my house like some sort of criminal on house arrest.  I use to think I was bored, but really I was just day dreaming and I found that took me to a very dark and lonely bitter place.

It is how I realized that yes this illness is overwhelming and exhausting and mentally challenging, but if it becomes everything, if I choose to make it bigger than it already is then I will stay in that dark and lonely bitter place.  I told a friend about an example.  My mom and I go to the same nail salon to get our toes done, we only go on the day when both Tina and Rebekah work.  I go to Tina, my mom Rebekah it happened by chance the first time and three years later it's the way it has stayed.  I don't get my toes done unless it's Tina, and this is why...The last time we went was about a month ago right after I returned from Phoenix.  I didn't feel well but I thought I could push it and seriously, it's just sitting there letting someone paint your toes.  But when we walked inside it was a slight bit warm, enough that I asked if they could turn the air down.  Then we sat in our booth and I could really tell I was beginning to feel light headed and uncomfortable.  A few years ago I would have fought with myself, the dialogue in my head would have gone something like this..."Don't be ridiculous, it's 50 minutes of someone massaging and painting your toe nails, get a grip.  Who cares that you are light headed and feel weak, how many people would be happy getting there toes done on a Wednesday afternoon instead of at work...honestly Heather toughen the F up, drink some Coke and smile and make small talk..." What I did four weeks ago was say, "Tina I really don't feel well..." and you know what she did..."Okay let's wrap this up and get you out of here..." no fuss no muss no sirens went off or bells pointing my direction.  No frenzy no rushing around like a code Blue just happened.  This is why I go to Tina, she gets it - it's toes, I didn't feel well, I leave and sit in the car and close my eyes.  Period.

Even a year ago had I done exactly the same thing a different dialogue would have taken place in the car as I sat there waiting for my mom to finish.  That dialogue would have gone like this.."you knew you didn't feel up to it, why did you even try, I can't even go get my toes done without a major incident.."  It would be easy to continue down that path of self and illness frustration, and I still do it often, but then I catch myself and remind myself that the other way is so much easier - it is the simple truth.  It is the reality, I don't feel well I need to stop.  There are plenty of days and things I miss out on when it's fine by me to get in a good cry or see this illness as the Everest it can be, but there is equal if not more opportunities to turn this mountain into a mole hill...and maybe that's what the hell that phrase means in the first place...

get what you need...

What a sweet surprise!