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Posts Tagged ‘fatigue’

I am compelled to write today, for I must think out loud…
Hard work is a blessing that I miss very deeply. Has it been 7 years since I lost my job? It is as if it has disappeared, and now is only a faint image on the side of a discarded old milk carton. “Missing: Julie’s job. Last seen in Westlake Village, California. January 2010”.
I long for the old days of the gift of being cursed with the early morning demands and slowing down in my car balancing my coffee cup in one hand, putting on lip gloss with my other hand as the yellow light looks down upon me with a condescending glance as it dares to turn red just above my head, out of reach.
Today, I quietly carry the burden of longing to have the mental and physical strength to work once more.  I dare not say this out loud because what I desire immensely, really, is to hear about a friend’s day at work and I do not want my truth to leave them with odd feelings of discomfort. “What are you doing? Tell me everything”, I say, as if they were on vacation in a beautiful countryside villa. “What was on the agenda? What did you wear? Who did you see? Where did you have lunch? What did you talk about with the other tourists?” Oh, to be a part of that rat race once more.
Not too long ago, I foolishly pushed my body beyond it’s limitations day after day while I ran in this undesirable race that I miss so terribly this morning. I miss it so much that my heart aches. Somehow, I managed to work for 11 additional years with this horrific illness until my body and my mind gave out and my job was taken away from me. (Twice. Two jobs.)
Chronic Lyme Disease and the co-infections are a tricky foe. I try to hang on tight to this horrific unfortunate roller coaster ride. Free falling. Exhausting. Frightening… I did manage to actually give an attempt to socialize a couple days ago at my neighborhood annual street party, but now I must continue to pay the price for using all of my precious energy. I did not pace myself well enough. Perhaps I still need that yellow street signal just above my head to tell me, “Caution – slow down Jules!”…
Today I have made the decision to accept that I am unable to count traffic lights as they turn from yellow to red on my way to work, instead, I choose to count the blessings that I can see from my bedroom window. 3 beautiful quail, a couple humming birds, another bird being outsmarted as it chases a crazy old moth zig-zagging about, white puffy clouds – and the changing shadows on the ground from the morning sunshine… Soon I will step outside just so I can say I got outside today. I know the familiar fragrance of my own back yard will fill my spirit with gratitude.
Perhaps I will call my son just to thank him (once more) for everything he does for me. No fun for my boy to have had a sick mama for half of his life. I find him to be the most compassionate, caring, funny young man that I know. In fact, if he wasn’t my son, I’d want him to be my friend, you know, I mean, if I met him at work, or something. My son and I both have gotten good at counting our own special brand of blessings and knowing just how lucky we truly are…

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cactus heartI’ve missed writing immensely. I just have not been up to it. It’s not because I’ve been on vacation. It’s not because I’ve been too busy throwing dinner parties or something. And it sure isn’t because I’ve been out riding my bike. The reason I’ve missed writing immensely is, well, because I’ve missed me immensely. My life as I knew it – as well as the woman who lived it – seem to be long gone. Not just with my chronic health challenges. But at this moment, it is my truth, that as soon as my 85 year old father was diagnosed with his cancer, something shifted within myself as well. The shift happened deep with in my soul. And since I said goodbye to him the morning of February 20th, 2014, my heart has been missing – perhaps misplaced in Tucson somewhere.

What an amazing lesson I’ve learn as my life was turned upside down in a heartbeat – the greed of both of my father’s ex-wifes came gushing towards me.  Now, I’ve seen cheap. And I sure have seen frugal. But, greed? Never have I seen such a sight. It is quite unattractive in a person. I can see now why greed is included as one of The Seven Deadly Sins.

I’ve had to pull the plug on my dark thoughts quite often. And it sure can come out in my writing. Which is bringing me back to the beginning: I’ve missed writing immensely – it is just too dark to share.  And I miss my father so deeply that it’s completely unbearable. How do people do this? I do not know how they have gone before me, but for that I am grateful. Yes, I am grateful for every woman who has shown me that it is possible to continue living with out their father. I am sorry for anyone’s grief who has walked this path before me. For now I understand. For now I know.

It has been too long since I have felt good physically. No one really can actually know the depth of my health challenges – I believe the reason is that it is so personal. And because what I really need in a conversation is hard to come by – don’t give me unsolicited health advise – give me encouragement. And the only person who filled me with encouragement my whole life was my father. He was not perfect. But he never left me. He did not speak negatively of his ex-wife (my mother) when she walked out on us when I was a child – he gave me encouragement as he himself tried to do the things “the mom” is supposed to do.  He did not offer much advise unless I asked – but he sure did give me encouragement! Someone like that is hard to come by. I miss the lost art of encouraging words. I miss my father… I am grateful and honored that I got to be his voice. And I am grateful and honored that I’ve been given the opportunity to be in Tucson.

As for my heart, it is just misplaced, I’m sure I left it here somewhere. Soon, I will hear God’s voice directing me towards it. And just maybe, just perhaps, it will be better than it ever was before…

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Once I thought that I’d live in California forever. But I didn’t.

Once I thought that my dad would live forever. But he was not able to.

I never ever thought that I’d live in Tucson, surrounded by my father’s memories.

But suddenly, I do.

I’ve never known the depth of this grace.

I’ve never known this level of humbling fatherly love.

My gratitude is bottomless. My blessings quiet me.

My love is deep. Therefore my grief is deep.

I am a lucky girl because I am my father’s daughter.

the little road to my refuge. I never thought it would be a place to begin to heal, but it is...

the little road to my refuge. I never thought it would be a place to begin to heal, but it is…

I am just going through the motions day after day, missing my father immensely.

But it is with these motions that I will persevere & find my way & a new life.

Because this is how my father taught me to live.

Keep on pushing until I reach the top of the mountain.

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 20131115 airplane clouds

 

20140217I am forever eternally grateful that I listened to my heart and still was in Tucson, and not in LA, when my father suddenly took his last breath. Dad was my entire family on his side of the family. Gently, yet tightly, I held him as I looked at him with his perfect haircut he had just the day before.  I carefully, gently, slid my hand underneath the back of his neck and shoulders so I could hold him for as long as I needed – no one would dare ask me to let go of my dad. I intuitively knew that he could still feel my love, protection and admiration. My tears, endless, as I softly spoke into his ear, “You did good Dad. I’m so sorry that you were sick.  I understand that you were sick. You did good – please know that.  Please know that I understand.  Know you are incredibly brave, strong and sensitive to my feelings all in the same moment… I love you Dad… You did good. You did a good job raising me and my brother.  You were the original full-time single dad and you did a good job on your own with out help. God is with us.”…. As I slowly lifted my head off of the crook of my father’s neck, one of my gigantic tears had dropped to the inside of my glasses.  Ironically, my vision blurred. So hard to focus.  To take it all in. The moment important. The pain unbearable.  My dad so handsome.  His features resembling my grandmother so much that, momentarily, it startled me.

me Tucson trails

My heart has been so painfully broken since that morning on February 20th, 2014, that I am worried that I will never be my self again. It has been 3 and a half months and it seems I have lost my true voice. The voice I hear is not the old Julie I once knew. I don’t like to talk on the phone. I don’t like to talk to people when I go out side.  My body continues to decline from chronic pain and bone crushing fatigue.

What I especially don’t like or appreciate is, on the 9th day after my father passed and I saw him for the last time, I was coldly, cruelly and bluntly greeted with being told I must now get out of my home of 5 years. Who was this self-seeking self-loathing mean old woman who believes her own life of lies? The impostor drill sergeant stepping on landmines waiting to explode in the depth of her self imposed victim’s pot of poison –  orders screamed with ugly eyes of misplaced rage and envy, a block of black ice where a heart never ever was to begin with. Was it blood that I witnessed dripping from the black crevices of her empty soul? A clearly planned betrayal with the absurd transparent demand to immediately give up my familiar surroundings upon my return from Tucson and to say good bye to my many neighbors who had become my supportive friends.  I especially don’t like that I was forced to move away from my precious, precious little neighbor-friend Emma, who, once a week for 2 years, helped me with chores I had become physically unable to do myself.

I don’t like that the majority of my belongings, my few pieces of furniture, my comforting photographs, my old books of recovery I’ve read over & over for 27 years, sentimental knickknacks and all my clothes except for the suitcase I packed in my haste, are all in storage somewhere, I do not know where, but in Northern California somewhere, while I find myself suddenly living in my refuge, my safe haven, in my father’s guest room in Tucson Arizona. Along with my cat and my father’s 12 year old cat.

Now is the time.  Now is the time that I have been given. The opportunity to find out just what I am made of.  How deep does my courage run?  How strong is my faith?  Will my love and belief carry me though this time?  Am I steadfast and true as I allow God to continue to lead my way?  I continue to demand that my voice be heard. My vision is still as blurry as the morning my tear drop landed on the inside of my glasses as I leaned to hug & kiss my father goodbye…

I become mindful of my father’s words to me when I was a young teenager.  We were back packing  the switch backs up a particularly steep mountain in the High Sierras. I was looking up and feeling defeated as I was taken in by the gigantic mountain that was still in front of me.  It was looking down on me, daring me to come closer.  I did not like not knowing how much further I had to push myself before my father set up camp for the night. Exhausted I stopped and reached for my canteen that my father had hooked on my belt for me hours earlier.  Being acutely aware, my father gently held my shoulders and said, “Turn around Julie, and see how far you’ve come.” As I turned, with my father’s hand guiding me, I looked down behind me at the path we had just climbed.  I was overwhelmed by the dense beauty of the vast Sierra. The view before me was breathtaking and magnificent.  And it felt good.  I had done good and my father was able to prove it to me… Today I can turn around again, and see just how far I’ve come from LA.  It was not in my best interest to remain in my home – because home is where the heart is. No heart to be found there. I do not need to double check this lesson from long ago. This stage of this journey of mine remains in God’s hands.  And His plan is too brilliant for me to see right now. I look forward to that day when I will once more “turn around and see how far I’ve come”.

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IMG04047-20131228 Tucson fireplaceAnother late night as it reluctantly creeps towards a dark early morning. I can not sleep. I can not seem to breathe. My loss of appetite is bothersome. My entire body thumps with each beat of my weary heart.

I am well aware that I am not the first to walk in the wake of a loved one fighting to live. Cancer has only one destination in its horrific plan. However, my father has a much different plan. A clever plan. A plan so clever that all of us who are around him seem to be baffled as they watch him walk with out the aid of a wheelchair or a walker. And they watch him gain weight while he can only have nutrition through a tube that protrudes from his belly.  This feeding tube is due to the damage of the radiation – not the damage from the throat cancer. Even with the confusion my father lives with now – my phone rings in the middle of the night and he tells me with his painful sounding voice – before any of the caregivers bother to tell me when I call during the day – that “something is wrong“.  (By the way, I have found even better medical care for Dad!)

If these remarkable things have occurred, then why my bottomless sadness?  Why the isolation? Why the sleep deprivation? Why the private meltdowns…?

Because my father’s soul is changing. His larger than life personality is changing.

Once again it is all about the choices we have to make in life and then learning to live with and accept our choices.  And today – today was the day I saw the true reality that he is indeed beating the throat cancer, but the radiation and chemo treatments seemed to have relentlessly beaten him into becoming another person that resides inside his skinny body.  Quietly I hope this is temporary. It must be temporary.

While I was sitting with my father and holding his hand today, without warning, another piece of my heart broke away and crashed on the floor as if it was an ice glacier slipping into the Antarctic Ocean.

I have never admired my father so much – nor has he ever taught me such an important lesson in life.

As much as I long to sit and spend sweet time with the love of my life who lives in California – I will remain in Tucson to fight for my father so he can be as comfortable as possible for as long as he chooses – because this is the right thing to do.  And because of all of this, I am full of gratitude and I see and feel that God is with us at all times.

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I’ve been staying in Tucson longer than I originally anticipated. 9 weeks ago I arrived with endless hope and energy.  As today comes to a close I feel the weight of endless sadness – reckless sleeping has pushed down my weary shoulders and clouded my eyesight. I am amazed at the amount of tears that continue to fall many times a day.  I duck into an empty bathroom or I sit in my car, or suddenly I can not hold myself up as I am standing alone washing the dishes in my father’s empty home.

Is this the way life is now?  I am unable to see out.  Suffering from serious sleep deprivation as I make endless decisions for my father’s care.   I find myself with the suprising and distracting task of convincing caregivers that my father is in their facility to recover from throat cancer and chemo – not die – recover!  I have learned the hard way that because my father is quite thin and is on a feeding tube many false assumptions have been made.  My hope and faith is tested as I take someone aside to explain that my father is already a miracle!  can’t you see that he is walking unassisted?!  He was in a wheelchair only 2 months ago. PLUS he has gained 7 pounds since he went on that feeding tube.  I am quite clear on my hope.  I am quite clear I am spreading a positive force of healing thoughts. I am quite clear as I share my admiration for my father’s unwavering determination.  Yes, his confusion is heart breaking – however – he is tenacious and healing!

Caregivers giggle when he makes a face like a frog with a wide turned down mouth. Then he makes a face like a fish and puckers up.  “Ga. Ga. Ga!” he says with his broken raspy voice. “Ka – ka – ka!” He says with a sly smile and wink.  “Wow! Good ones Dad! You’re really improving!  Keep up the good work!” I tell him with a gentle hug. “Your throat exercises are making a big difference Dad!  I can tell.  I just know it to be true.  I catch a couple caregivers tilt their head with sudden understanding.  They ask questions. So my father teaches them what he is doing to rebuild his throat muscles.  The tumors that were at the top of his throat and airway are gone now.  He speaks highly of both his oncologist as well as his Speech Pathologist who visits him on Tuesdays and Thursdays.

Yes, it is another day in the life with surviving throat cancer.  But the good news is, my father’s hard work, combined with hope and my private tears and prayer is paying off in baby steps. The Speech Pathologist gave him 3 sips of water yesterday and then 3 sips of apple juice. He did not cough. He did not choke.  He swallowed – he drank them. It was magnificent.

And the best news of all is that my father’s alma mater, Michigan State, won the Rose Bowl.  All we can do is the very best we can do.  Half measures avail us nothing.  It’s another blessed day in Tucson.  It is the recovery that comes from hope. Tears are allowed with hope. Confusion is allowed with hope.  Sleepless lonely nights in an empty house can still have hope and blessings in every corner.Tucson Sunset

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IMG03689-20131103Another long challenging day in Tucson, Arizona as we all try to do our best to care for my father.  I’m hoping the explanation to his deep confusion is because of the many weeks of meds and no solid food.  He did not feel this sick when he had the beginning stages of throat cancer. Now he is someone recovering from the damaging effects of chemo and radiation. What are our choices here? My father is 85 years old.  Die because we have cancer?  Or die because we are fighting cancer?  Is it just a different journey with the same end result?  But not being able to eat?!  As for me, if I don’t eat I can not function. . .

I am mindful of my brief but lovely and blessed experience today when I went out side for some fresh air to take a moment.  The air so pure it made me feel lighter.  The clouds were putting on a magnificent show of many colors. With a motion of their own, both my arms stretched to the clouds.  They longed to grab on and be carried away into the cold brisk clean air.  What a freeing moment that would be. . .

Turning around I see the doors of the skilled living facility where my father is literally putting up a wicked fight to get his life back and get back home.  In his rough of a whisper agonizing voice he speaks of his cat.  The cat I am taking care of.  The cat he misses that is inside of the home that he misses. . . Perhaps it was the clouds.  Perhaps it was the wind. Perhaps it was because I felt a little cold. But I knew in that moment that this is not my sadness.  This is not my struggle.  This is not my day to be in a wheelchair fighting to stand up.  All of this belongs to my father.  My father the lifeguard. The swimmer at Michigan State. The original lover of dogs and cats. The Sierra Club leader. The tennis player. The single father during the late 60’s and 70’s.  The guy telling a funny joke at the bar while he sips his beer. The golfer who loves the sport so much that he bought a home in Tucson with a view of a Golf Course.  The guy who keeps trying with all his might to stand up from his wheel chair.  He’s frustrated. Confused.  The caregivers and nurses kindly ask him to “please sit back down”. They have to speak over the loud buzzing of the high-pitched bells.  And all I am is the daughter who gets the honor of standing by his side and holding his frail arm and says, “I’m right here Dad, you stand untill you want to sit back down.” It was for quite a few more seconds, but he did it. I kneeled next to him looked up and I told him my truth, “Dad, I admire you.”  And it was good. It was simple. It was empowering.

Tomorrow I get to do it all over again – except tomorrow – I’m going to bring his cat with me.  Let’s change-up this journey a bit. . .

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