Sunday, May 27, 2012


There is a constant struggle with this illness to justify oneself.  In today's world we all want answers to our questions, solutions to our problems all of which we want quickly - this illness is one of those medical situations that there currently is no consensus on treatment and even the diagnostic criteria has changed over the last twenty years.  These factors make the following story all the more important - to have a hero like Louis Zamperini go so far as to give one of his Purple Hearts to the author of his story, Laura Hillenbrand a 30 year suffer from Chronic Fatigue, words can not describe how this gesture helps legitimize our collective struggle - especially those of us who feel that this illness has limited our voices and our impact on the world around us.

Here is the video from CBS Sunday Morning's profile of these two heroes among us...

Sophie looking a bit glum - I concur

The title alone says it all - can you come out the other side - unbroken...
Here are images of my day today...

Memorial Day Weekend - Roses in Bloom

Here was my list for today...
1. Empty Dishwasher - check
2. Load Dishwasher - check
3. Write something - anything - check
4. Shower - pending
5. Make bed - check
6. Eat - check
7. Write thank you's for birthday gifts - pending

This is just the reality of a the ebb and flow - and I am grateful that there is even a list I can manage to check off -

Saturday, May 26, 2012

just want to cry

I just read Sue Jackson's post from a few days ago before deciding to write anything...the thought of writing seemed so overwhelming and reading someone else who "gets it" was helpful, but I also felt sad for her that she is crashing after doing so much better.  All day today I just kept waiting and waiting and i am still waiting for it to pass.  I kept thinking how do you describe this feeling to the outside, I feel as if someone came and took like a vampire sucked all the energy slowly from my veins, leaving me looking the same but not having an ounce of energy to do anything.  Its as if you were asked to walk around all day on ice skates while carrying a heavy backpack - the mental fatigue of trying to balance walking on thin metal blades without the benefit of smooth ice for the blades to grab ahold of and allow you to glide from left to right.

I have a lot i want to do today...but it will all have to wait again for tomorrow.  I am being reminded of how much more I am doing..once again, but when your arms feel like lead and picking up a glass of water feels like you are lifting a bowling bowl - its so hard to once again believe this is happening...i feel numb to it right now...despite my personal pep talks - today they are not working.

I lost my grandfather on Wednesday afternoon, and I really would like to be more actively helping my mom with all the odds and ends that go into a funeral - but I just don't have it in me.  There is no reserve bank to make a withdrawal - so I will just wait.

Its amazing to me that every time this happens, a really bad fatigue spell, I get worried something is really wrong...the what if detectives begin their work scanning from head to toe...I laugh despite myself - this is nothing new..but each time when it gets this bad it holds my brain a hostage of disbelief.

My left arm still is sore from tennis....almost three weeks ago..and I can still feel it when I lift my arm up..hmm.I am to tired to smile, to be angry, to be sad, to tired...

I got a beautiful ring from my parents for my dream ring...i stare at it all the time feeling like someone is going to come knocking at the door asking me to return it...I also stare at it because its hard to take in something so beautiful..i'm not exaggerating - this perfect canary diamond was formed in the earth - and 100 years from now if my niece's daughter is wearing it - it will look as beautiful then as it did the day i got it - that is what i love about jewelry - its tenacious and effortless beauty that time can not erase.  I love wearing something that someone I loved wore day after day...a witness to their life and wearing it I have carry a piece of their story with when i look at this ring on my right finger like a crazy person i send it messages - can a bit of your magic - the perfect circumstances for you to be formed - can a bit of that serendipity give me strength - give me hope that the story that will be passed down with this gorgeous piece of art be that it was a tough long road - but she never gave up hope - and whomever wears it in the future carry with them some of that strength - the same way i feel when i put on my grandfather's cuffing, or my grandmother's wedding band...

My grandfather passed from old age.  It really is a rarity to not succumb to an illness, rather succumb to time.  It takes a brave soul to hang on to this life when you have far outlived your body - many people spend a lifetime trying to learn to live in the moment - my grandfather never had that dilemma - it was the only way he knew how.

Well -that my friends is called stream of consciousness - thanks for trying to follow along...

Sue Jackson's Moving Through Molassas

Sunday, May 20, 2012


Yesterday for the first time in weeks I woke up with the overwhelming feeling of dread - of how can I mind over matter this thing again.  I have accomplished so much more with my health and kept reminding myself of that yesterday, and eased up and just took "another day off".  Its really all I could do - and as I was making myself lunch I thought to myself how unconsciously for the past few years I have separated myself into two people - the "sick" person and the "good day" person.

I thoroughly enjoy the "good day" person, that person feels like myself - but this "sick" "bad day" person, I try my best to do everything in my power to separate from.  Considering the last five plus years, that part of myself has muscled its way to the front of the line -I must face the fact that I have purposely chosen to separate myself from the prevailing dictator of my day to day life, and I realized this separation must stop. I must despite my kicking and screaming learn how to not hate this person.  Because it is impossible to leave oneself, we are the ultimate commitment, in sickness and in health to death do us part.

I guess you could say another layer of acceptance or coping, despite all the strides I have made from my treatment s in Phoenix, they are not sufficient to erase my "better" half.  For so long I was so concerned that if I embraced this "sick" self I would become only this entity - its the acute illness - push through mentality that we are all more accustomed to - like its your fault if you succumb to this fatigue it only perpetuates its occurance - I know that is not the case, but it has been a difficult task to believe it.

So, its time that I figured out how to like this part of me that wishing away is not an option.  I have to learn how to enjoy the bad days as much as the good days - how to find pleasure in the small accomplishments of emptying the dishwasher, taking a shower, looking out the window, all the things I get so frustrated at doing when I would prefer to be out and about roaming the world the way I always imagined.  I have felt the presence of what it would be like again not to be shackled by this illness and remembering the sweetness of fewer burdens is a double edged sword - oh how sharper and deeper it cuts when this crushing half returns.

While I was writing this, the voice inside my head kept hearing Dr. Matin Luther King Jr.'s "I've Been to the Mountaintop" final speech.  I couldn't figure out why...what a strange thing to pop in my head...I really had very little recollection of the speech and in fact had forgotten that it was his last and final speech...why, why was this booming voice echoing through my brain.  The wonders of google, had me  back in that moment, reading the transcript - and how strange, that I really did not remember the body of the work, but it couldn't more accurately describe the conclusion that I had come to regarding living within the moments of this illness.  Can you be exactly in this moment in time, despite this moment in time being one of great difficulty, but can you be there because you can taste the freedom that lies ahead..

"But I wouldn't stop there. Strangely enough, I would turn to the Almighty, and say, "If you allow me to live just a few years in the second half of the twentieth century, I will be happy." Now that's a strange statement to make, because the world is all messed up. The nation is sick. Trouble is in the land. Confusion all around. That's a strange statement. But I know, somehow, that only when it is dark enough, can you see the stars. And I see God working in this period of the twentieth century in a away that men, in some strange way, are responding — something is happening in our world. The masses of people are rising up. And wherever they are assembled today, whether they are in Johannesburg, South Africa; Nairobi, Kenya; Accra, Ghana; New York City; Atlanta, Georgia; Jackson, Mississippi; or Memphis, Tennessee — the cry is always the same — "We want to be free."  
Dr. Martin Luther King, Jr.

Remembering  This is a great article taken from NPR speaking with other's about that day and speech
Full Transcript - Reading this is as powerful as hearing it

Well, I don't know what will happen now. We've got some difficult days ahead. But it doesn't matter with me now. Because I've been to the mountaintop. And I don't mind.  MLK, Jr.

I have mentioned so often in these writings the desire to be free.  And struggle with the discipline it takes to be free in one's mind when we are not free in our body.  That universal concept of freedom spans many of life circumstances.  As I read those powerful words of Dr. King, the idea that they were fighting against "separate but equal" - knowing that separate is never equal.  And I needed reminding of that lesson, separation of oneself, breaks one down - it does not heal.  

Our country is constantly walking that tight rope of when separation heals and when it hurts - as it has for myself, in the beginning it was a necessity to separate these parts of myself to survive, to fight and to understand - but the time has come to learn to be free - no matter which person opens their eyes to the new day - it is of course a new day and that means that anything is possible....

Wednesday, May 16, 2012

you say its your birthday...

I don't have much to say except to send out to cyber space all the appreciation I have for everyone making my birthday so special! I am one lucky girl!

Monday, May 14, 2012

Harder You Fall

My insides are a wreck, i am nauseous and starving, my head is pounding.  I feel constantly on the verge of tears or yelling at anyone - including my self, I'm just so frustrated. I'm so tired.  I can't think straight - its like that children's book that keeps repeating, "it was a terrible awful no good day"...or something like that - my brain and emotions are all jumbled in the joy of feeling so good and falling so hard - the irritation of being stuck inside with not enough energy to even try and push through.  I feel fragile in body and mind and selfish that I just want to feel good for my birthday - it seems as silly as a child not getting the present they want - but the thing is I just want my health back - I want the time that has been lost - no matter what - no one can give you back time. I want the fear of this being my permanent reality or perhaps something worse to take hold to leave me.   And I want to be above it all - zen enough - strong enough - grateful enough for what I do have - but right now I feel as alone as the duck I saw in the middle of the road...
Lonely Man

In the middle of the road -looking off in the distance - with no where to go.  I stared at that duck for about twenty minutes as it just stood there, cars swerving, while it slowly would take one step closer to the grass.  I worried that he was looking in vain for the female companion that I have not seen since the storm.  This lonely duck was staring at the exact spot I last saw the female the day of the heavy rain.  While this duck and his buddy stood in the pouring rain on the street- they were watching the female in the yard and gully across from them.  Where was she?  Did she find shelter from the storm?  Why didn't those lazy ass ducks move their tail feathers and go be by her side that day?

Last night we went for a short walk - all I could manage - and I commented how our two male ducks had found a third musketeer - again the Lady that I have seen for three years still missing.  Are their missing posters for ducks?  Do they flee their partners - file for separation - have an adulterous affair?All I know is that I am helpless to help...oh how I hope the Lady had a mid-life crisis and found another pond.

Three Musketeers

So I just kept gazing at the duck, putting my own perceptions on its reality.  Nature always gets me - I can't watch Frozen Planet - please March of the Penguins nearly sent me to therapy!  I guess I feel a bit like those animals when they are fighting against the elements.  If the strongest survive, and its braun not brains - I would be in trouble.  I am terrified of tornados, the devastation obviously - but my true fear lies in the aftermath.  I am not strong enough on a daily basis - what would I do under such situations of distress?  How would I manage if I was issued rations for food? Food that I couldn't eat b/c of my allergies?  No PB and J with an apple or banana for me....I know its a wild stretch of the anxious mind - but this illness makes me feel so vulnerable to my surroundings - has made preparation a necessity...that when I am knocked down again - these musings are what overtake me.  Again, it was a terrible awful no good day...

My mind was so busy while my body refused to cooperate.  I had enough energy to eat, throw in a load of laundry, make the bed....but then a shower...always the "tell" - isn't that what they call it in poker when someone gives away their hand by their habits...the shower is my "tell" in CFS - the last three weeks I haven't even given a shower a second thought - but yesterday I began getting a little shaky, my arms ached as I shampooed, the warmth began to irritate and then today I kept thinking - I'll be up for a shower in the next hour then the next - well its 11pm and I am bypassing the situation. 

So, I got all involved in a court tv then CNN live feed of FL vs Kaufman.  Just for those of you who don't know me....I'm going with Kaufman.

The higher you go the further you fall....I must appreciate the fall - a year ago I was already on the ground.

Sunday, May 13, 2012

Happy Mother's Day

Unfortunately chronic fatigue and its kaleidoscope of symptoms doesn't' seem to take your requests on when you would prefer to have a good day.  Trying to make it to the 10:30 Brunch was not going well - at 8:30am I was up and suffering from stomach pains alternating with being starving again.  To put it discreetly I made many trips to the W.C. - the French have such a more elegant word for bathroom.  By 9:30 am I had managed to eat before I went to the brunch determining it best to just have something simple.  As we entered the Racquet Club, of course it was hot and stuffy, despite my constant complaints that you need the air set low when you have a brunch filled with omelet stations, warming dishes, and the dining room filled to capacity, someone just never seems to be able to solve this simple problem.  Then the smell of food overtook me, and after saying hello to my mom, sister, cousins and aunt I managed about 5 minutes before I had to go sit outside and get some fresh air.

Again, the good news, I didn't have to flee - I just needed some air, small sips of water, and time to regain some strength.  After about 20 minutes, I was able to go back inside, and catch up with my family and enjoy the remainder of the early afternoon.  Its a frustrating thing not understanding why now and being fairly helpless to do much to feel better.  But instead of my normal self irritation, I took this a bit more in stride, did the best I could and chose to take my own advice...the bird was in my hand....there was a wonderful quote that was in Sue Jackson's article about living with CFS taken from the link in my previous post - and sums up what I was thinking....
"Our life now is different than it was before CFS, but it’s still ours."  - Sue Jackson

My Mom, Nephew George Patrick and Neice Addison

The other sister Brooke

Happy Mother's Day 

Day Late

Apparently yesterday was CFS/ME Awareness Day....I'm not there yet getting deeply involved in the awareness, research, etc...doing my blog is my fist step - and I hope to get there and get there in an important and valuable capacity in the coming years - until then - thank you Sue for your constant informative posts - so I will add it here -

Taken from Sue Jackson's Blog
Sue's Blog

SATURDAY, MAY 12, 2012

International ME/CFS Awareness Day 2012

Today is International CFS/ME Awareness Day. Whether you have ME/CFS or have a sick friend or family member, here are some simple things you can do to help educate the world and help promote research for CFS, even if you can't leave your house:

  1. About CFIDS by the CFIDS Association
  2. An Overview of Chronic Fatigue Syndrome by Phoenix Rising
  3. The CDC's information on CFS
  4. My own article, CFS: An Invisible Illness, published last fall on Lively Woman
  • You and your friends and family can also donate money to help fund badly-needed CFS research. I know the economy has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to the CFIDS Association or other ME/CFS organization of your choice.
  • You can also donate to CFS research without spending any extra money by using a shopping donation site or links like:
  • CFIDS Association's Shop and Give links
  • You can even earn money for CFS research when you use a search engine:
Happy Awareness Day!  Help to spread the word!

Saturday, May 12, 2012


I can feel it, a few of the symptoms slowly peaking their way back.  The slight itching above my right lip when I eat, a faint rash hovering below the surface on my neck, the necessity to spend most of the day sitting or lying in bed.  It's been an amazingly successful three weeks since I have returned from Phoenix - I have felt stronger and more stable for a longer stretch of time than I have had in close to a year.  But I am getting that itch that I know a blood treatment would be extremely helpful right now - unfortunately summer has begun in Phoenix and other pressing things are happening here at home, the combination of which would make a quick trip into the desert most likely more harmful than helpful.

The biggest challenge I am facing right now, is a good problem to have - its pacing myself.  Its the most difficult of tasks when you start feeling better - you want to catch up on everything you have missed out on - you want to seize the day in case it is all taken away from you - but I know that the best approach right now is to be mindful of my limitations and get into a rhythm that will promote my health until early fall when I will return to Phoenix.

I know my treatments are not in the scope of anything traditional but I now feel I am a walking billboard for their merits.  I have a bit of guilt in fact that more people are not blessed with the luck I have had in finding the right doctor that understands my body and its fragile nature and tipping points.  I am frustrated that UV Photophoresis isn't more accessible and studied in more depth in the United States medical schools.  Despite its amazing benefits and lack of side effects, there are very few trained physicians using this technique.  I am also grateful that I have a doctor that understands the delicate balance of how far to push and when to pull back.

Today I spent most of the day in and out of bed, however it wasn't the crushing fatigue that has plagued me in the past, it was closer to when you have pushed too far and your body is asking politely that you stop and take a deep breathe.  I watched the movie A Big Year, it didn't do well in the theaters, its about three men - Owen Wilson, Jack Black and Steve Martin - all "Birders" those that have a passion for finding species of birds, and the Big Year is the contest to see who finds the greatest number of different species.  It was one of those movies that you may not enjoy if you were in the wrong state of mind, but today - my contemplative slow paced self I found it a joy to watch.  There is such a contest in real life, and I find it so interesting when someone has a passion for something so specific.  I have never been someone so completely drawn to a specific hobby or sport - I guess my truest passion has always been my relationships - and as I have spoken about before, this illness has often robbed me of taking advantage of them in the same way I use to -

When I was lying in bed in Phoenix these two Morning Doves would come and sit on the fence outside my window almost every day around 4pm.  There was this odd comfort I found in seeing them most days, their little partnership and habitual nature - and then just the other day here back home I was welcomed back by the two male ducks and their female companion that roam between the yards in my neighborhood.  Again - the comfort of their return - and despite the storm that raged outside they stood in the middle of the empty road without a care in the world - living in the moment.  Like those Birders, this journey to reclaim my health has been all consuming - it has taken me across the country, to many many doctors, tested my patience and at times left me feeling crazy -

Tomorrow is Mother's Day and words would never do justice for the gratitude and love I have for mine.  One afternoon while we were driving back from my treatment, I was staring out the window as the desert landscape blurred my eyes.  My mind was blank, resting from the weight of pressure I carried in the necessity these treatments proved successful - the burden I carried was no longer for myself it was for my parents.  And as the world moved slowly past me I imagined what this health crisis would have looked like without the faith, patience, understanding and sacrifices my parents so freely gave.  Its not uncommon for me to recognize the winning lottery ticket I cashed in with the parents I was given, but the depth of the impact their trust and "we will do whatever it takes" determination until you are well - at that moment took my breathe away.  Never once during this journey have they doubted me, denied me, or lost faith in me - and I was overcome with a sadness for those that were not giving the most precious gift of unconditional love.  This illness takes you back to your childhood, because of the helplessness it often bestows, and I couldn't stop thinking of the children out there alone in this world, at the mercy of parents that take advantage of their power against the powerless.

I'm like a bird, I'll only fly away
I don't know where my soul is
I don't know where my home is

Nelly Furtado

There have been many times during this journey that I wanted to fly away - fly away into myself and away from everyone else - to escape myself - there have been times that I just yell - that I can't stand being who I am trapped in this body that seems determined to defy every rule - but there has never been a moment where I didn't know where my home was - and like those migrating birds - that prepare for a long uncertain journey - a journey that also defies all the rules - we make it home.

One of my favorite pieces of writing is Toni Morrison's Lecture when she accepts her Nobel Prize for Literature, and I encourage you to read it, so in closing to keep with the bird theme...

"I don't know whether the bird you are holding is dead or alive, but what I do know is that it is in your hands. It is in your hands."

This illness forces me every day to evaluate that how I cope is always in my hands.  And I am thankful that I have many around me to encourage me when I don't feel I have the strength to fly - 

My 4pm Companions

Let it Rain

Sunday, May 6, 2012

Red Bird / Red Oak

The following are two essays that were assignments at Red Bird/ Red Oak writing studio.  I felt I should add them due to my previous post.  I loved taking classes with Judy Bridges, a wonderful writing teacher, however those classes were terribly difficult for me due to the extreme fatigue I was experiencing in the fall of 2009.  I would drive to beautiful Bay View, need about three to four snack breaks for the three hour class, and despite my best efforts only managed one session - its my great hope that knock on wood as my health improves I will get back there in the near future and continue the writing project I had intended on my Dad's father's life story...


My grandfather had an entourage before it was fashionable to have a group of people surrounding your daily moves.  Therefore, it was quite unusual that day that he was driving by himself.  In fact, the last conversation my father had with him was regarding this fact.  George was to be in court later that week.   He was headed to Elmbrook Hospital to prove to the prosecution that he was in fact ill and had heart problems, he was going to get his medical records.  My dad asked if he wanted him to drive him, he said no.  Timing is a funny thing, he was at a hospital, yet he had his heart attack minutes later driving home.  He hit a light pole, and was gone.  The next week my dad walked into court and instead of handing over the medical records, they handed over a death certificate. 
My grandfather hated hospitals and most doctors with a passion.  He did not abide by the old school rule that doctors were God and had the final word.  He always said, I am hiring them just like I hire anyone one else.  Unfortunately, I had no idea that George was ever sick.  I had no clue he had had open heart surgery and no idea, nor did any of us that he was filled with cancer when he died.  I don’t know if it was denial or his constant need to move forward but illness and George were not to mix, and they didn’t.  On one occasion George called my dad from Columbia hospital and barked at my dad to meet him on the side street in 15 minutes, as my dad pulled up there he was with his overcoat not so discreetly hiding his hospital gown.  He jumped in the car, blurted some obscenity that he did not need to be there and they left.  Apparently this was a constant problem; he just could not follow anyone’s rules, even if they were in his best interest. 
In some ways it was a blessing not knowing my grandfather was sick.  In other’s it’s what caused such a shock to my system.  The paradox that one minute the world was safe and the next it could collapse without warning.  I had been to other funerals, for heaven sake’s my mother’s side of the family is Irish Catholic, we weren’t church people, but we were funeral people.  It was like, who is it this week, “your great aunt’s second cousin”, all I knew is if someone died you were there.  So funerals didn’t make me uncomfortable, but I had never known anyone in the casket before.  To this day I rarely miss a funeral.  I am a good mourner, and that has nothing to do with George’s death.  I have been handed coats and asked where to sign in at numerous funerals being mistaken for the staff. George’s funeral was different, and I was not prepared. 
Now is as good a time as any to mention its no mistake that I alternate between Grandpa and George when remembering my grandfather.  I always called him Grandpa, but in my head he was always George.  He wasn’t soft in the traditional Grandpa way, and my father had always called him George.  I always wonder if he would have lived longer would I have changed my verbiage.  I doubt it, because I was his favorite, and I think he liked the words Grandpa coming from me, but who knows.  So in my memory I switch back and forth, sometimes I see him as my grandfather and other times I see him as everyone else, a force to be reckoned with, and that was George.
That night that I witnessed my dad’s sorrow, as a child I thought it only meant one thing, the same thing I felt this gaping emptiness that I didn’t know if I would ever feel whole again.  I didn’t know that my father was in a hurricane of emotions, and despite the grave concerns of the estate, the only fear he stated out loud was “what if no one comes”.   I don’t know how many people came to the wake at the funeral home, I just know the sea of people never seemed to end.  I only remember bits and pieces, in my experience that is how grief works, your mind will only allow you to take in what you can handle.  I remember sitting on an off white brocade settee love seat to the left of the coffin with my grandmother and my uncle.  I remember that after the service I walked up to the casket with my grandmother and she touched George’s lifeless hand and kissed it.  She told me it was okay, but I didn’t want to touch him.  He didn’t look at all like himself, yet he looked exactly the same.  I remember he was wearing a brown suit, and later I would write a note and show it to my little sister that if I died I wanted to be put in pajamas.  My first will and testament at age eleven.  I remember thinking how odd that for eternity you would have to sleep in your dress clothes.  I remember most of the funeral just like that, very factual and detached, trying to wrap the confusion of my child self and my adult awareness into a harmonious agreement.  But from that moment on I never really saw the world as a child again.  I never felt invincible, because the person I held up as untouchable, larger than life itself - without warning was plucked from the earth, and if it could happen to George it could happen to anyone. 
What I do remember with a visceral clarity was the moment we were to go home.  Everyone else had gone, my father and mother were making arrangements with the funeral director for the church service tomorrow and they were about to close the casket.  I think they forgot I was still there, because at the moment they tried I went into a state of hysteria and with all the life inside of me in contrast to the lifeless body next to me I wasn’t going to let them shut the lid.  And the questions that no one could answer began pouring out of my aching scared heart, whom would be with him all night, what if he couldn’t breathe and woke up?  My father carefully pried my fingers, full of life off of the casket and I remember glancing at my grandpa’s lifeless fingers – reality.  I remember my head hitting the back of my dad’s shoulder as my limp body collapsed into exhaustion.

It Scared Me
I crouched frozen on the stairs catching the profile of my father hunched heavy hearted over the antique wood chopping block, his head limply falling forward.  The yellow and blue cast iron pots and pans hanging overhead, the one’s he often bumps his head on, he doesn’t even notice.  Then slowly I see his clenched fist, slamming down intently, slowly on the solid wood.  Once, twice, the third time he stops mid motion, the dull thuds echoed restraint.  My young strong father looked instantly fragile as one by one tears slowly hit the block of wood below. The kitchen was dark, and in the silence I could begin to hear him shake.  My mother moved towards him, but he shuddered away, she laid her hand on his back with the slightest of touch and left him alone.  Any other circumstance I would have misinterpreted his action as anger towards her, unfortunately I understood.  My mother had been the victim of my grief earlier as I screamed with all my childhood might from the depths of a soul I didn’t know I had that I hated her.  I hated her because she was the one to tell me my grandpa was dead.  News I could not bear to hear, to hear was to feel, as with my father to be touched was to feel and all we wanted to be was numb and alone.  I didn’t dare move, I didn’t want him to see me, in fact I wanted to pretend I didn’t see it myself.  I had never seen my father cry, and I was afraid.


I had been avoiding today's outing for the past week.  My 96 year old grandpa - who has been living at my parent's house for the past 3 years needed to be transferred to hospice care at a nursing home facility.  It has been a heartbreaking decision for my parent's whom at all costs wanted him to remain in their home, however there comes a time when as I said to them that Grandpa's best interest can not be the only interest that is considered, and the mental, physical and emotional toll of taking care of someone, even with help of part time hospice care is no longer enough.  I have watched the devastating toll this has taken on my parents, feeling as if they have let someone down, which despite not being true, become the lies we tell ourselves when we are dealt with cards that can not be changed, and no improvement is in sight.  Its the ultimate debt most pay in exchange to living to 96 with no real illness except the fatigue of living on this earth for an extended period of time.  Its been a slow decline over the last year, and even in the past 4 months since home hospice was approved the pit falls have come step by step, until home care would need extended supervision.  Thus, the initial plan of a 5 day respite care has almost for certain become permanent.

The saddest part of my grandfather's decline, besides the weakness and lack of bodily functions that have slowly plagued his body is the vacancy in his eyes.  This vacant look, the mumbled "uh ha" for most questions are the result of someone's body outliving their spirit.  A resignation of sorts that his time is only a matter of time.  I know many people that grew up without grandparents, and the fact that 8 years ago I still had three living, and living well is something of amazing good fortune, but with that long life has meant having to witness first hand the cruel process of a drawn out death.

With the death of both of my grandmother's I had a serendipitous or some might say spiritual intervention.  My Grandma Kelly, my mother's mom, had been fighting death for years, plagued with a colon that doctors described as sewing up sawdust, due to radiation in her 50's for uterine cancer, she lived her later years with constant diarrhea.  She was one of the most elegant and composed sick patients.  She had in her lifetime fought off uterine cancer, open heart surgery for a valve replacement and then the severe colon destruction, in the end it was a fall that broke her pelvis that would place her straight from the hospital to a hospice bed.  My grandma and I were extremely close, for most of my teen and early adult life I had my routine of meeting my parents and grandparents for their Friday Night ritual fish fry.  In my twenties, it was not  uncommon for me to meet them and get a good dinner, before I would excuse myself from the restaurant before their night cap and head out to meet my friends.  My favorite thing my grandmother did was whenever I was at her house and laying on the sofa watching Wheel of Fortune or a sporting event was that she always would rub my feet - never did I ask, it was just something she did - it was comfort, it was love.

Eight years ago, my cousin Katie had decided to come and visit me in Phoenix, the night she arrived we got the phone call that my grandma had slipped even further - I got on the phone with my aunt and said what should we do, she responded calmly - if you need to see her alive get on the next plane out.  All Katie saw from that visit was the airport and my apartment, we booked the next flight available, 12 hours later.  Katie was my guardian angel, so I didn't have to make that lonely flight home by myself.  We arrived in Milwaukee around 9pm and went straight to the hospice.  My grandmother hadn't been responsive for over 12 hours, and when we got in the room, she opened her eyes and looked straight at us - and with the life so close to leaving her life, she held our hands.  My mom and her sister never left, as I went back to my parents house, I went to bed and around 4am awoke from the following "dream"

I saw her, she was scared, and she didn't want to leave us
I was shocked, in my dream like state, I couldn't determine was this real, was this a dream
She looked at me with such sorrow, such remorse, and I told her it was okay
We would be okay, We could do it, She could leave
I kept saying it over and over, its okay, you can leave
Its okay - I love you - You can leave - Goodbye
I woke up in sweats - out of breathe and at the very second I heard the phone ring
It was over - She was gone.

My Grandma Dreske, was another unpaved path.  After stage 4 breast cancer, bone cancer, and then pancreatic cancer - which would finally be too much.  Despite being in her 80's and suffering from macular degeneration and diabetes, she took the the bold move of trying IV chemotherapy again.  However, the chemo would prove to much and I believe most likely contributed to the stroke she suffered from on her the last chemotherapy she had determined to do.  My grandma even in her death defied medicine which was her claim to fame.  She slipped into unconsciousness and the critical care hospice team was by her side, and every day after day after day kept saying - this is it - but it wasn't it -was a long 10 days - on the final day of her life, I was at home after visiting - it was a brutally hot and humid day, and at the time I was suffering badly from my hyperthyroidism, so the heat was not my friend.  It had been that warm for the past six days, so the nursing home was having trouble keeping it cool d/t the overwhelming humidity that had plagued the city.  As I was sitting at home, I couldn't shake it that I had to go back, so at 9pm I got in the car and drove over to the nursing center.  I remember the dark clouds, the humid summer sky and my heart pounding from exhaustion and fear - that this was it.  I knocked timidly on her door, and the hospice caregiver said she could leave the room - I told her it wasn't necessary, I wouldn't be long I just needed to say goodbye.  I was shaky and overheated, I walked in and she lay there somewhat peacefully - I whispered in her ear - gave her a kiss on the forehead and walked out of there knowing that was the last time I would see her alive. And it was, she passed away a few hours after I left, I was the last family member to see her alive.

I wrote and delivered my Grandma Kelly's eulogy, but I was so distraught and unprepared to be truthful I didn't like it - and have no idea if there even is a copy, but these are the two I wrote and delivered for my Grandma Dreske. I see them as a tribute to her life, and a bit of insight of what I draw on during my dark days.  I foce myself to remember I have a lineage of fighters, my Grandma Kelly, Grandma Dreske and George and know somewhere inside of my DNA is the strength that was passed on, even though its often hard to find.  During my treatments I would wear my grandmother's wedding band, George's (my late grandfather) mosaic cufflink around my neck, and there is nothing I physically need to carry from my Grandma Kelly because she is never far from reach.  I appreciate you taking the time to read the following tribute, of someone you don't know - but may it bring you close to someone you have known - someone you have loved and were forced to say goodbye.

In Remembrance of Eileen Dreske

I would like to thank everyone for gathering to celebrate the life of Eileen Dreske. All of you have been sources of great comfort to our family and my grandmother. On her behalf, I would like to thank you for being a part of her life, for it was the people around her, which brought her the most joy. I would like to take a moment to again thank the dedicated staff at St Camillus Skilled Nursing, Vitas Hospice Services, her long time friends and family that made this last year more palpable.

There are three other care givers that I would like to make special mention that my grandmother held in deep regard. Lynette Sokolowski who probably never imagined when she walked into my grandmother’s condo for a “simple” house cleaning position, that it would begin a most wonderful and complicated mix of friendship, caregiver, reality checker and a godsend to our family when we needed help, Lynette thank you for your 20 years of caring. Dr. Filmanowicz, who lucky for us broke his promise to my grandmother that he would not retire until she passed, he needed a vacation. All of us would forever hear the words, “there is no one like Dr. Fil”. And of course my father, I need not say more.

There is the old saying, “You cannot change the wind but you can adjust the sails”
If my grandmother had a motto that was it.

I was looking for the perfect words this evening before we say our final collective good-bye tomorrow and thumbed through Anna Quindlen’s book Happiness. While reading it, I smiled to myself thinking there is no inspiration I need to look further than the woman whom we are remembering today. Eileen did not need to read the words of advice in Anna’s book, because she lived it. When Anna was just 19 she lost her mother to ovarian cancer. Perhaps that was the secret of their shared life view. My grandmother also lost her mother when she was 19, and at that moment I can only guess you have to make a choice, sail the rough waters or adjust your sails. We all know what choice Eileen made.

Eileen chose to live a wonderful life. She was a careful historian of it, keeping meticulous albums of all her travels, graduation brochures, cards she received. She loved nice things, but was much unattached to them. It was the life long relationships that she held most dear. She had plenty of rough waters, but her courage, her optimism, her sense for adventure and her faith in her religion and friends and family carried her through many storms.

There is no better teacher, than a student of life. Eileen, like most women of her generation did not have the opportunity to go to college, so life was her education and she soaked it up. Whether it was different cultures through her love of travel or her continuing to learn about the faith she held so dear. She gained much from the knowledge of the Jesuits at San Camillo, she always found places to learn. She road that stationary bike and next to her often would be one of the retired Jesuit priests, there she would ask him how the church has changed and continue to shape her world view. She learned much from her friends and family,
because she was a wonderful listener.

My grandmother was not afraid. It is not to say there were not moments of fear or doubt, but at her core she was not afraid to die, and that gift allowed her to live the fullest of lives. I often asked her how she got through the painful cancer treatments, and she would say simply, “I just tell myself nothing lasts forever” When she lost some of her freedoms, due to macular degeneration or aging, she was ingenious at ways to still live fully. Whether it was using books on tape, or using a walker to get around. She did not look at something as a crutch, but rather what choice would give her more freedom to live. She also wanted to see you live your own life, she was always very busy, and expected that you would be too. She did not need to live vicariously through others, and that gave her the opportunity to find great joy and happiness in the success and happiness of others.

About a year and a half ago, my grandma told me she was ready. She was ready for the next adventure, for the next chapter. Her faith was so strong that she wanted to be reunited with those who have gone before her. I can not say I hold that same faith as deep in my heart as she did, but I do hold strongly to my faith in people, the kindness of others. My grandmother was a complex person, meaning different things to different people. I love her sometimes most for her imperfections, because she was so human. It was the kindness, the joy, the wonderful sense of humor, which links us all in our shared memory.

I leave you this evening with a story that exemplifies the advice of Eileen’s unknown soul sister Anna Quindlen, where in her book she shares lines from a Gwendlyn Brooks poem as words to live by…

Exhaust the little moment, Soon it Dies

And be it gash or gold, it will not Come Again in this Identical Disguise

Eileen, Mom and I were in France we were late to catch a train that headed out of the city. That trip began with my grandma using a cane, since she had been diagnosed with bone cancer; they advised her to use one. We had just minutes to make it to train car 82, and it was necessary otherwise we wouldn’t get out of Paris until the next day, so without thinking we started to run, and it was a long run. As we out of breath handed the conductor our tickets and collapsed on the plush train seats, we looked at each other and just started to laugh. Eileen had the biggest smile on her face, and once we gained our breath she looked at us and said with such gratitude, “Gosh it felt good to run, I can’t remember the last time I ran, it had be as a little kid” she just sat there with this beaming glow, and I will remember it forever, it was who she was. She was able to enjoy that moment, that freedom, pure joy brought on by the simplest of acts, a task she forgot she could still do, living, running, breathing…who could ask for more. 

And now that we say goodbye we will adjust our sails to see her everyday in our lives, in the moments that we think we can’t persevere but we do, in the moments when we just sit and enjoy the view.

Thank you. Good night 

A Brief History

According to the dictionary to eulogize is to give high praise or tribute.  Well, that is an easy task, the difficulty lies in making it concise.  Last night, I used the metaphor that I thought so perfectly described my grandmother, and that was, “You cannot change the wind, but you can adjust the sails” The statement seemed to resonate with a collective nod for those in attendance. 

My grandmother was born into an immigrant family.  Her parents met here in Wisconsin, but ironically were from the same area in Slovakia.  When my grandmother’s mother passed away when Eileen was 19, this is where I believe she made a decision to take life as it was dealt, and to always move forward.  It was at this time she took on the role of second parent to her younger brother Al.  The bond between them was never more apparent than in her last days.  She new when Al entered the room, a life of shared experiences of joy and heartache that only siblings could share.  Eileen and my grandfather, George were very proud to be surrogate grandparents to Joyce and Al’s children, and our family is very grateful for the love and care they have given to Eileen over the years.  She loved her other siblings deeply, Emil and her sister Fran, and missed them immensely over the years.

Eileen married George and an entire new phase of her life began.  It is well known that she had more than one suitor, and why she chose George, I am not sure she really new.  But I have a feeling looking back on her life that she had a love for adventure that she new she would have with George.  That union was not an easy one, but I don’t think she would have had it any other way, it offered her the opportunity to see the world in an unconventional way, and though the seas may have been rough at times, she had very strong sails.

I can not speak of how she was as a mother, but she taught us all lessons of life by her example.  She loved her children deeply and unconditionally.  And I know how blessed I was along with my sister, Brooke, and Cousins Jenny, Jason, Jake and Jarrod to have had her as a Grandmother.  She was an unconventional grandmother, in the ways that she didn’t bake cookies or play a role she thought Grandmother’s should play.  She was herself, and that was the best lesson of all.  She loved to be active, travel, play golf, read her mysteries and learn.  She loved enjoying and cultivating her friendships.  She was a wonderful listener, and gave advice when asked, but never judged.  She was happy when we were busy and never wanted for more than others to be happy and enjoy creating their lives.

After George died, she had a bit of calm before the storm.  The storm being the unrelenting cancer that would prove that medicine is an imperfect science.  She was our little Phoenix rising, our cat with nine lives.  She was diagnosed with stage 4 breast cancer a month before she was headed on a European tour with her friend Nellie.  She stared that cancer down, and decided, not now.  It was not her time, she wasn’t finished and we were all blessed that she was right.  She was an amazing fighter, her courage, her attitude, her faith, were all exposed and it is at that time of great anguish that she lived the truth of who she was.  The years of her health waxing and waning, ups and downs, were handled with more grace and dignity than I could imagine.  She had more life to live, and she did just that.

The last year of Eileen’s life was a struggle not only for her, but also for those who loved her so deeply.  I often say, the only blessing of her stroke was that she did not have the short term memory to realize how long she had been ill.  And once again, she defied the odds of pancreatic cancer.  But even in this last year, I continued to learn from her, watch her adapt to her new surroundings, keep fighting for her independence and she still offered so much joy.  We were blessed that her personality, her witty sense of humor, and often her feisty impatience were always in tact.  We had lost a little of her, the way we wanted her to be, but her essence was there every day. 

In her final days, I am thankful that she was at peace.  As I watched her decline, despite a sadness deep in my soul, I had such profound gratefulness.  Grateful to be able to witness a life well lived.  Grateful to have been blessed with so many years to learn from her way of living.  It is a wonderful gift to enjoy life as it is handed to you, to be able to adjust and adapt, and to be able to leave this world with no regrets.  I know deep in my heart, that she left in peace.  Her faith brought her home but she did not leave us behind, each of us will walk our days seeing a little of our life with her eyes, she will not forget us and she will never be forgotten.

So the time has come again, the inevitable completion of another circle of life, and this time - I feel I have nothing to give.  I just can't bear it again.  Today, we arrived at the newest care facility and with a hesitant gait I forced my legs to move across the threshold into the lobby that looks like every other lobby at a nursing home facility.  The false serenity with the god awful diluted peach, moss green and light oak wood that adorns the winged chairs and sofas.  The colors that some genius determined would illicit a calmness, all I saw was the life sucked out of the pigment in my surroundings as a mirror to the life that was slowly deteriorating all around us.  No amount of paint or cheery receptionist could hide the reality of these walls.  As we made our way up three flights of stairs (since I still can't get into an elevator) pushed the button to get to the floor, walked down yet another corridor to turn and walk down another hallway to then hit the double doors marked Vitas - my system began to shut down...these pale lifeless walls with bad oil paintings began closing in on me.  My heart began to race, my palms were sweating, my mind was jumping and focused on trying to find the nearest exit.  I could feel myself losing all rational thought, and all my dad's words were blurred together as I focused on walking to the end of the final hallway to get to the last room on the left that my grandpa was in - as I approached my mom emerged, and I saw for a brief second my grandpa, in his burnt orange cashmere sweater (despite it feeling like a sauna) his eyes closed, resting comfortably.  And with that quick visual - I just couldn't do it and I fled.

As I made my way out of the maze, cursing myself for this panic that arose, we got to the car and I sunk into myself with a crushing defeat.  I had let myself down -in my eyes let my parent's and grandpa down.  I sat in silence as my boyfriend drove us home, and encouraged me that it was a dry run - it would get easier.  There is some truth in that statement, I now know what the facility is like, what to expect, but watching someone you love slip slowly away and those around us helpless to transfer vitality, never gets easier.

I appreciate my Grandfather's affable nature, his stoic way of continuing on after my grandmother left us, and I admire my parent's for their strength to know it was time to move him, the most difficult decision they have had to make.  I know I have to be careful, because I have been feeling so much better and I know I have been pushing the limits on my self, and so today - I fled.  Not my finest hour, but perhaps the necessary one to stay strong enough for the days and weeks ahead.  I wish my Grandpa peace and freedom in his dreams, when his eyes are closed, I hope he is young and vital again in his mind, and can rest knowing reaching his age is not for the faint of heart and he continues to quietly press on.

Saturday, May 5, 2012

Over the shoulder...

Last night I started developing some flu like symptoms, which I am guessing was the result of the first time truly exercising besides slow walks and laps in a pool in years.  When I was writing my previous post I could tell I was having mental fatigue, having difficulty finding words, and difficulty in structuring a cohesive story.  But I had to get it down...the overwhelming disbelief of what I had just accomplished.

It was not shocking that as the evening progressed I began getting pain in my mid left quadrant and the chills.  I took my typical supplement routine that normally helps with the side pain and then got up and grabbed my gray cashmere blanket that I love for its thin warmth and softness.  I wrapped that around me and went back to bed, the chills subsided and I was able to have a sound night sleep.

When I woke up this morning I had to pinch myself, was it all a dream?  Or did I actually play tennis last night?  I lay still in bed not wanting to move wondering how bad the after effects would be...and once again was shocked that while every muscle in my body ached, it was the good ache that you would expect from anyone who hadn't used their muscles in a long time.  It wasn't the heavy, weighted down with lead feeling I have become accustomed to over the past 6 plus years.

I moved slowly all morning, trying not to look over my shoulder wondering when or if I would be knocked down at the knees and be crawling into bed for the remainder of the day.  As the afternoon progressed I was able to do a few little errands around the house, and I was pretty sure I would be strong enough to head to Build A Bear for my best friend's daughter's birthday.  The only symptom that was nagging at me was my lack of appetite, I had a small breakfast, and then at 2pm thought I really need to eat something.  Again, nothing was appealing.

About a year and half ago, I had this very strange symptom, I couldn't remember how to sign my name anymore.  I remember the day it happened, I was at the grocery store, absolutely exhausted, laser focused I went through the aisles with the only goal to get in and get out.  I went to swipe my credit card and sign the jeopardy like screen and my hand just sat there.  I had been signing my name, HKDreske for over 15 years, the same way, capitol H swirl the horizontal line take the pen up to the top for the K follow that line straight down, pick up the pen make the angled lines for the remainder of the K then straight to the hand started and my brain couldn't' figure out which way to go.  I kind of half signed half printed and left the store a bit dazed and concerned.  I figured it was just a one time thing, but again and again, I could not figure out how to complete this autonomic habitual task.  I considered my options...if I go to my primary care doctor in town, they will either A: say its no big deal or question "are you sure you can't do you have any other neurological complaints...or B: Send me for a whole host of tests to rule out numerous awful things that would result in an otherwise highly functioning individual forget how to sign their name.  So, weighing these options, I did nothing.  I didn't even tell my doctor in Phoenix, I decided to add it to the box of strange symptoms, but it struck a nerve and every time I would use my credit card, it would be staring me in my face.  Like a bad omen that hung around in the back of my brain and every day was a constant reminder that something was very wrong.  Was this the beginning of more to come?

Last October when I went to Phoenix, I decided to tell my physician about it, she said it wasn't too uncommon with other patients she had that were dealing with a multi system illness that the nervous system is affected in many ways, and she was confident that after more aggressive treatments my ability to reclaim my signature would come back.  I had been in Phoenix about two or three weeks, when I headed to Houston's to pick up the oh so delicious ribs, and I went to sign the check and as quickly as my signature had disappeared without knowing how or why, it was back.  I was so excited that when I got into the car I grabbed any paper I could find and began signing my name over and over and over just to make sure it wasn't a fluke.

My point of this is that when I get extremely fatigued, simple things - automatic aka autonomic things - lose their ease. So as I was sitting down, this afternoon the second I bit into my lunch, without thinking, like a child that takes to big a bite the food was no longer in my mouth but spit out on the plate.  The problem then was that my body began to swallow as it simultaneously began to spit out food, the entire act of swallowing again was no longer a parasympathetic response, it was confused and all mixed up in my brain - the how to...I felt immediately as if my throat was in a spasm.  My body was no longer under my control and I felt as if I was starving for air.  Then the adrenaline storm rushed to the surface and myself into a panicked state.  Here it was, the crash....I didn't have any overt signs of the fatigue, but at the core my system collapsed.  And besides needing to be talked down, and feeling overwhelmed by the "attack", I wasn't shocked.

The other symptom I noticed was I couldn't get enough sugar today, again it was like all the glucose had been used up yesterday and I was fighting to regain equilibrium.  It took about an hour of slow sips of Sprite, an Adrenal homeopathic and sitting outside in the fresh air and distraction of some phone calls, but an hour later a calm came and after resting I was able to make it to the 4:30 birthday party and then crash when I got home, slept for an hour and made it to a friend's house for a brief outdoor party.  I only stayed and hour - but I made it - even after the mid afternoon crash.  Again - a monumental shift.  Previously those earlier symptoms would have only been the warning sign of many more to come, however today it was more like a large Blip on an otherwise good day.

It's a very hard symptom to explain, and I would be curious if others have experienced similar episodes in dealing with Chronic Fatigue, and when its happening its awful - its a reminder that you are treading lightly and despite not wanting to have that omnipresent notion that if you push to hard you are at risk to get burned.  But again, the last two days I have experienced waves of optimism, encouraging stamina and many comments that I look and sound healthier.

There is no doubt I am tired, both physically and mentally - take for instance that I didn't catch my pun of 40 - Love...the countdown has begun until the big 40 and last night I was awoken by a dream and had to catch my breathe realizing how time is marching on...and despite not enjoying that I am now more aptly represented by the mother figure on TV and the big screen and if you see 90210 on my DVR someone come and rescue me... I am trying to shift my focus because let's face it the 30's really have not been a walk in the park - so to brighter days...

Here's to Lucky Seven!  Seven on the Seventh! Happy Golden Birthday Kate - here's wishing us both a golden year ahead.  xoxo.

Friday, May 4, 2012

Love 40

In 14 weeks of treatments  - 70 days...You traveled 1800 miles,  had approximately 15  blood treatments, 25 hydrotherapies, plenty of ozone, multitude of supplements, reduced the swelling in your liver and spleen, decreased the calcified lymph nodes in your neck, and swam a total of 50 laps....and two weeks after leaving Phoenix - you did the unthinkable - you played 30 minutes of tennis - yes folks you heard it here, and I even managed to sweat!  More correctly my body actually responded to being warm and cooled itself by sweating -

Its my favorite part of the Amazing Race, the finish line, and normally Phil Keoghan is grinning widely while summarizing the adventure for the million dollar winners - in 30 days you traveled though 5 continents -  8 countries -  52,000 miles - you have officially won the Amazing Race.  Well, I may not have won a million bucks, but the old saying never gets old that if you don't have your health you don't have anything - and tonight as my left wrist shook, and my backhand didn't look half bad,  I was able to be on an indoor court without after 5 minutes feeling light headed and dizzy - I was in absolute awe - and I still am finding it hard to believe - I sure felt like those 14 weeks in the desert I have a victory to show for it...

Tennis is not high on my list of enjoyable sports - the idea of purposefully putting yourself in the beating sun on a cement like surface has never much appealed.  And then don't get me started with the little matching skirts and the all to common clique like atmosphere a tennis court and club has historically drawn   - the magnetic force of grown up mean girls disguised under the veil of sportsmanship - but tonight as I was hitting that little yellow ball across the net - the way it felt to "hit" something" - I got it - and for the first time in forever there were moments where I actually felt strong.  There is nothing better than feeling strong.

As I am home now, I'm a bit shaky and feeling a little light headed, but I did it - perhaps I have seen a little bit of light - at the end of this very long tunnel - I was out in the real world tonight - I was able to leave the house, run into two old friends and "chit chat" and I was able to do something a year ago would be unthinkable - a year ago trying to watch a half hour of tennis in a muggy indoor court would have left me overheated and weak.  As we left the court tonight, for the first time it all felt worth it - the time, the money, the fevers, the oh so unpleasant blood treatments - deep breathe of relief - it felt worth it and driving home in the moon lit sky the world didn't seem so black - tennis anyone?

Foot Race to the Finish

addendum...just went to grab a glass and i can hardly lift my arm....and it feels good!  hoping tomorrow isn't a crash...

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