Archive for the ‘Fibromyalgia’ Category
Posted in Dad's throat cancer, Fibromyalgia, home, hope, pain, sober, spiritual growth, tagged alcoholism, community, faith, health, insomnia, Iris, recovery, Tucson on July 8, 2014| Leave a Comment »
For tonight, I will execute one of my little feeling better tricks: The Gratitude List. More often than not, writing it works a heck of a lot better than thinking it… And I am so grateful, that, somehow, I am still sober…
Posted in Dad's throat cancer, Fibromyalgia, home, hope, pain, parent, spiritual growth, tagged blessings, faith, family, fatigue, Gratitude, health, High Sierras, Tucson on June 8, 2014| 9 Comments »
I 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.
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”.
My father peacefully passed away 12 days ago. I have vivid dreams of him almost every night. While my grieving has been quite unbearable and I do not seem to have the energy to answer my phone – I am comforted to know that perhaps my father has finally found my brother. My dad would be so happy to see him again. . . I love you Dad. I know you promised that I will be happy again – but I just don’t think that it will be today. . . but maybe tomorrow. . .
Another 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.
Posted in Dad's throat cancer, Fibromyalgia, hope, pain, parent, sober, spiritual growth, tagged alcoholism, blessings, faith, family, fatigue, Gratitude, health, inspiration, love, recovery, Tucson on January 3, 2014| 4 Comments »
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.
Posted in Dad's throat cancer, Fibromyalgia, home, pain, parent, sober, spiritual growth, tagged alcoholism, blessings, faith, forgive, Gratitude, insomnia, inspiration, surrender on December 14, 2013| 4 Comments »
…enjoying sweet memories of simpler times makes todays complications more do-able…
…I have no regrets, Dad, no regrets…