missing...

Anyone that can find my personality and optimism please contact...both are currently in hiding and doing a pretty good job of staying out of sight.  When you are sick it seems you are often rewarded for "being positive" but yet somedays you just don't feel like putting on the charade anymore.  I am tired.  I am sick and I am tired.  I miss my old life, I miss the ease of things, I miss not living in two places trying and trying to get better.  This will pass, always does, and I'm not trying for a pity party...just honesty.  I just sometimes get so close to the light at the end of this and then something just knocks you to your knees.  As always I am mindful of all that is good and true and brings me joy...but somedays you look back and see how long you have been fighting just to get to normal and it all feels a bit for not.  For some reason it's the food that has really gotten me down.  Perhaps because this flu has left me with such little appetite and I would just love some chicken noodle soup with potatoes and celery and carrots.  Or some applesauce or a grocery list of normalcy.  I guess that is what I am missing most, normalcy.

Like any grieving process somedays you are on top of it an others the losses just seem to pile as high as a crash on the freeway.  I've had too much time on my hands with not feeling well enough to really even watch tv so the days have ticked by second by second just waiting for something to give.  Then I feel guilty for not being stronger or happier or more grateful...it all just seems too much sometimes.  And I look around me and thought I never thought it would take this long or get this bad.  I like to take a problem and find a solution and days like the past week I am out.  I am riding on hope and faith of others and realizing you don't always have to be the "up beat" patient...no one gave me a medal when I was anyways so for now I'm just going to keep waiting.

default

Most of us have default emotional states...it's where you go when you are particularly vulnerable.  Mine is scared, always has been.  As a somewhat rational adult I can talk myself down, but sometimes it's not my head that goes there it's my body.  This flu has taking me skydiving to terrified-ville.  It's a bad cough and a bunch of days of a fever..it's getting better but the fatigue that has accompanied it is knocking me out.

I got an email from a friend yesterday and you know when happy things make you sad...well that's what happened.  She wrote a few of us b/c she had gone through some old boxes and found all these letters that we had written back and forth in our college days.  And it brought me back to that time of my life and I ached for that person so badly as my mind drifted to that time I no longer recognize myself.  I wrote back to her, that we are lucky that we can look back and realize we didn't waste a minute of our twenties...we lived in this crazy utopia and we never really took it for granted.  Or at least I didn't.

We can't re-create the past and most of us grow and expand, but everyone once in awhile these friends get together and re-live the old days...they drink too much stay out too late and laugh until their stomachs ache.  And the thing is I can't do it.  I can try and tag along for an hour or so but I can't eat the food anymore, can't drink anymore, and all the sweetness seems to be lost sometimes when you have to try so hard.  I am so tired of trying.

So today...I am going to stop.  Stop trying to be different to be better to be well.  I am just going to sit in this space and find a way to find some peace in it.  Because frankly, I'm out of ideas.

Fate found me wonderful friends...Love has kept them close

Rabbit

For years with this illness when I feel like I have hit bottom, I find there is another bottom waiting for me.  I have like most suffering from a chronic or acute illness played little mental games with myself; continually pulling a rabbit out of the hat and wondering where the hell did it come from?  I arrived two days ago in Phoenix while fighting the flu.  And as I am getting ready for the doctor today I am beginning to wonder if there are any furry friends left to help me find the strength that I just don't feel I have anymore.  So anyone with some ugly multi colored scarves up their sleeves or a spare hare...send them my way.

Control

breathe

Sometimes you just have to watch everything implode.  You can try your hardest to be kind and thoughtful and giving.  You can try your hardest to be loving and encouraging and forgiving.  You can try your hardest to be compassionate and give the best advice you can to help others.  You can try and try and keep on trying and sometimes it just isn't good enough.  Or perhaps it is good enough but it doesn't matter anymore, it just doesn't matter.  And in these moments when you feel like you can't take it one more second the chaos that is around you and the lack of control you have over it; it's a good idea to just close your eyes and breathe.  That you can control and like taking hold of the suction at the dentist, it may not be enough, but it will get you through from this moment to the next.  And the next moment after that and after that and pretty soon this awful pit in your stomach may begin to diminish.  You can look out onto the water and realize you can control the actions of other's as much as you can control the tide, and no amount of trying is going to make a difference.

crash

Then you will do the mantra that you do when you feel so lost you will find gratitude.  You will be thankful for all that you have and all that you have done.  You will close your eyes and know deep in your heart you did all you could with the most pure of intentions.  You will find peace in the silence instead of fear ringing in your ears.  You will find lessons and courage and hope and resilience.  You will continue to try your hardest.

get what you need...

My Friend Dr. Forrest Beck's Book
Cultivating the Fine Art of Selfishness

It's hard to ask for what you need.  Perhaps it's the biggest lesson I have learned if I look back with nostalgia on the last year.  You learn how fragile love is and sometimes mistakes we made way in the beginning set you up for success or failure without you even recognizing it.  That is the hardest part, sometimes it is just too late, and that would be the saddest love story of all if you didn't take the lessons from the past and try and right those wrongs.  I am slowly learning that asking for what you need is perhaps the least selfish of acts.  I will get back at you in 2014 and let you know...

I am not very good at saying good-bye, in fact in a world filled with enough pain to "fill this planet" there is rarely a situation that I can point to malicious intent and lay down the gauntlet of forever shunned.  Perhaps it comes from living a life a bit less than you had hoped for and understanding how hard I try every day to do my best and acknowledge that I am pretty sure most others do too.  Maybe they don't succeed or even fail miserably, but I don't doubt that most people are kind and good and when they go to bed at night they ponder the mistakes of the day and try their best not to repeat them tomorrow.  Most of us hardly need others pointing out our failures, thanks though, I've got that covered all by myself.

I guess if I could wish for anything this coming year it's forgiveness.  I know living with this illness I have a sensitive barometer for happiness and sadness.  When those that I love are in pain or suffering I find it difficult to shield myself from those ills.  I have learned again and again that I have no place for ill will, it brings me down more than it ever would those that it is directed at, and perhaps those that we want to direct our anger and disappointment in if we could dig a bit deeper and see through a lens of compassion we could empower someone rather than tear them down further.  When kindness isn't necessarily earned I believe that is the time when it is most necessary.

May you get everything you need in 2013 and perhaps if you are lucky everything you want.

teaspoon of sugar...

 My sister watched Mary Poppins so many times that our VCR tape finally broke; I couldn't have been more relieved.  Especially the depressing scene with the feed the bird song even as a young child I saw the pain in that song.  However, wouldn't it be nice if a teaspoon of sugar would solve all of our problems.  Perhaps it makes the medicine go down, if only medicine could fix all of our ills.

dancing penguins...

This holiday has been leaps and bounds of progress but like Mary Poppins it felt a bit like jumping into the chalk drawings that offer a temporary escape and then reality comes back and you realize you have made strides but there is a long way to go.  I am so grateful that this year I was so much better than last, but it is always hard when all of a sudden you can't really get out of bed and you close your eyes and wish you could jump through sidewalk drawings in the street and stay a bit longer.  Or just take that big carpet bag with everything you needed and fly away.

jumping

Proud...

The Holidays are a super-sized version of where you are at in your life sometimes.  And sometimes all it takes is four little words to make it all worth it..."I am proud of you..." okay, I guess that was five!  I have an amazing family and support group, and that has all expanded since I decided to get out from under the "shame" or "insecurities" of this illness and began to start living truthfully.  Living honestly rather than pretending I was my old self and masquerading my way throughout the day.  It's scary and hard to come to terms with this new life, but the energy it was taking to pretend it didn't exist I have now found was even more difficult.

I went to my Aunt and Uncle's for dinner this evening, and last year a complicated stressful situation of dodging foods I couldn't eat was a simple fix...I brought my own food...and you know what...no one cared!  That is the thing about our own lives, we tend to expand the impact of what we are dealing with in our mind, and when we step back and are honest about what our limitations are and what our fears or anxieties are you have begun to strip away a bit of the power those little voices of doubt have over you.

This year, I changed my flight at the last minute due to my health being in a poor place on Thursday and a blizzard that was impacting our airport.  I then preceded to get a treatment on both Friday and because my doctor is so dedicated and wanted to make sure I left as strong as possible on Saturday.  From the treatment I raced home, finished packing, made some food and got to the airport.  At the airport I found someone to help me carry some of my things and Sophie and I did the oh so fun security etc...I got in to Milwaukee at 12 am...and headed home.  And for the past three days since I have been home I hosted at my house twice and went to my parents and my aunt and uncle's .... I participated in Christmas.  While I was at my parent's house my 4 year old niece spontaneously came up to me while I was alone in our den, and she climbed on my lap, wrapped her arms around me and said, "Heather, I missed you when you were in Arizona." And it broke my heart a bit; yet made the sacrifice all the more worth it.  Because I was present in that moment, and my treatments though took away time give me quality.

While at our big family gathering one of my Uncles came up to me and said those four words..."I am proud of you..." "I am proud of you for being here..." and for all of you CFS'ers or anyone that sometimes feels like whatever they are going through no one is paying attention...there is no greater gift one can give than that of acknowledgement.

Somehow when we get older it seems that those words that we hear so much as a child...I am proud of you...begin to disappear.  You are expected to do things, behave a certain way and be an "adult."  However, maybe that is where a bit of our compassion gets lost without even knowing it and being told it tonight, I will remember once again...words can hurt and words can heal.

Happy Holidays. Photo courtesy of the 4 year old! 

December 24th 2012

Addendum...
I logged on to AOL and saw this clip and it was exactly what I was trying to say...but came from Nobel Laureate and Holocaust survivor Elie Weisel....Friendship is a Religion from his new book Open Heart