Sharon E. Rainey's Blog, page 6
September 5, 2016
Dad’s Autopsy
Appropriate, Clear, Normal, Unremarkable, Usual
Appear too many times,
Used in circumstances I consider unimaginable and unacceptable.
Too many measurements and percentages
Objective
Absent of emotion.
“Organs glisten”
So does the morning dew,
But I cannot associate the two
Listed Cause of Death
Relieves my guilt, certifying we did all we could
But does not soften the searing intensity of my grief
It confirms what we thought
It denies what we feared
It details the physical condition a man left this dimension in to proceed to another.
It is void of spirit and emotion.
An autopsy provides data for information and analysis.
My friend who advised me against reading the document,
Reading it himself and
Translating only the necessary information,
Is as good a friend as he is a physician.
He knows I need spirit and emotion to describe my father.
He knows there is more to any person’s life (and death) than data.
An autopsy does not measure Dad’s:
– generosity
– compassion
– integrity
– commitment
– thoughtfulness
– passion
– determination
– kindness
– service to others
– impeccable standards
– love for and dedication to his wife, his daughters, his sons-in-law, and most assuredly his grandchildren
Sharon & Earle laughing at during Gayle and Ken’s wedding reception. October, 2014
Nor does the autopsy illustrate or display Dad’s:– southern drawl
– panache for telling a good joke
– extensive reading interests
– political savvy
– stellar ethics
– adaptive social skills
– admonishment of mediocrity
– firm, welcoming handshake and the smile and eye contact that followed
– deeply rooted spiritual foundation
– genuine gentlemanly manner
– lavish mentoring
The autopsy also doesn’t give me directions to or the combination to Dad’s version of Fibber McGee’s closet.
The autopsy does not gauge how:
– deeply loved
– thoroughly popular
– intensely indispensable
– widely respected
– infinitely admired
– sorely missed
– highly decorated
– straightforwardly appreciated
– and yes, again, deeply, deeply loved
My Dad
Was,
Is, and
Ever will be.
Sharon Rainey
September 5, 2016
August 6, 2016
This Man – Series of Poems
This Man
Brings me hot tea with honey and milk
Soothing my worries before bed.
Takes my face in his hands
Reassures me of his unending love for me, for us.
Kisses me gently as a seal of his promise he has kept for more than a quarter century.
This man
Massages my restless legs
Lulling my mind to dreamland
Covers my bare shoulders with our shared blanket.
In moments of desperation and exasperation
This Man
Asks if maybe I need the meds again.
Maybe I need to . . . .
Speechless we are both.
Tears speak more voluminously than any word.
And Then
This Man
Takes me into his arms and
Holds me, holding my grief with me.
###
This Man
Says, “Let’s take a ride”
Three days of rain colored me as grey as the sky capping our valley.
We drive the valley,
Capturing photos of the
Moments we relish
each time we sit on the porch.
This Man
Stops every time I say Stop, even when it is ten feet at a time.
Points out many, many things I do not initially see.
Including the bald eagle nesting across the way.
This Man
Adjusts the camera because I am clueless in its operation.
I see it in my head
He
Helps me bring it out of the digital machine.
This Man
Drives for hours in a single valley
Drives across soggy hay fields to
Shoot the bald eagle even more closely, metaphorically, of course
Drives into the Jefferson National Forest
Drives on roads no longer maintained by the Commonwealth
Drives on gravel paths, public and private
Drives along the raspberry bushes to snatch the season’s final offerings
This Man
Captures a bunny across the road, metaphorically, of course.
Captures the sun across the ridge after the rain
Captures the eagle in flight, nothing short of majestic magic.
Captures the wildflowers, the lichen.
This Man
Loves me in more ways than I knew Love could exist.
###
This Man
Hears my quiet sobs in the shower
Enters quietly
Asking permission first
I tell him it is merely Grief.
“I miss Dad.”
Final Scenes of Death refuse to leave the sanctity of my memory
He surrounds my shoulders with his
He grieves with me.
This man
Washes my hair
Conditions my hair
Showers away my tears
Whispering softly, earnestly of his love for me.
He
Promises to always be at my side.
Promises this Grief will lessen and will
Evolve into Manageable.
###
This Man
Leans across the divided darkness
Whispers
Tomorrow, I am going to get up early and drive into town.
I am going to bring back a willow tree for you.
Together, we will
Plant the foundation of our love here.
Tears flood my face with a nod and a
Gutteral Thank You.
This man
Reaches down to the farthest corner of my fears and
Brings me to the
Light of Love.
Bearing Witness
Fifteen months apart, I bore witness to two Fathers’ deaths.
Each Father
Loved unconditionally
Fretted about their children’s happiness
Made mistakes
Made amends
Worked earnestly and fervently for their family, their community, and their country
Honored their wives for their entire marriage
Respect those who earned it
Donated to causes they believed worthy
Gave generously of knowledge, wisdom, experience, and insight
Each Father
Knew departure was within days and hours
Was surrounded by family, by love
Said all that was needed to say to each soul sharing the room
Accepted our love and our final words
as their final gifts from here
Each Father,
In the last hours of the last days,
In the final words,
Said to me,
I love you.
Each Father
Accepted death as God’s Will and God’s Plan.
Accepted Jesus Christ as Lord and Savior.
Ascended into the Kingdom of Heaven
Was brought to God by their beloved.
Was fully restored and
Became an angel of God.
This I know.
My Playlist from Dad’s Final 26 Days – The Songs with Words – Part 2
As I stated in my earlier post:
During Dad’s 26 days and nights in the hospital, I listened to particular songs depending on what I needed. The music helped close out the hospital noises, helped me calm my breathing and anxiety, and it gave me a place for my emotions to connect and feel safe.
This music transcended me at times. It felt as though I was talking to Dad in some of the songs, giving words to emotions that were so strong, I wasn’t sure I could survive the pain.
Some of the songs were significant in their melodic tone, some were because of the specific lyrics, and some, because they allowed my tears to flow more easily. And some were my simple prayers to God, pleading for Him to heal Dad.
Some of us connect through words, some through deeds and others through music.
In my pain, when I couldn’t find my words, these songs found them for me.
I probably should have researched what each of these songs meant to the songwriters, but at the time I was choosing them, it didn’t matter. What mattered was how I could maintain hope, a sense of balance, and my connection to Dad.
These are the songs that ended up on my list.
The Songs with Words
About You – the Breakthrough by Mary J. Blige
Every now and then, I needed to hear the voice of a strong woman who has risen above her struggles and succeed in being the woman God wanted her to be. Mary J. Blige is one of those amazing women who defeated demons in her life and now brings joy and light to others.
“I am in the place with the love / Yeah, it feels, it feels good / (It’s a new life for me, yeah)”
The Big Love Has Died – 7 by Seal
I still cry every single time I hear this song. The love between a father and daughter is a Big Love. And mine has died.
“So confused, I’m amazed, I refused to believe you’d never change in my time spent with you”
“And I believed in everything you aspired to be”
“And I’m past all the grieving”
“Something inside of me breaks / When I get your phone call / And I just can’t hide / The big love has died”
“There is a love that’s real I’ll always feel and that I can’t deny / But it’s the friend in me this time you see that has to say goodbye / Quietly you and me, time to say goodbye”
“Nothing can take away / The pain and the sorrow, everything at stake”
Big Sky Country – Living with the Law by Chris Whitley
This song let me dream about those places in our country that still offer big open skies, untouched mountains, and the grace of God. In the hospital room, I would take Dad’s and my souls to the Big Sky Country. Standing on the mountaintops, we BREATHED, slow, long, and deep filling our lungs with healing energy.
“Now when this over, over and through / And all them changes have come and passed / I wanna meet you in the big sky country / Just wanna prove, mama, love can last”
Bittersweet Symphony – this is Music: The Singles, 92-98 by The Verve
Life had been good and not so good. Now was not so good. I wanted God to hear my prayers and I wanted his answer to be yes.
“It’s a bittersweet symphony, that’s life / ‘Cause it’s a bittersweet symphony, this life”
“Well I’ve never prayed, but tonight I’m on my knees, yeah / I need to hear some sounds that recognize the pain in me / I let the melody shine, let it cleanse my mind, I feel free now / But the airways are clean and there’s nobody singing to me now”
Daylight Saving – 7 by Seal
Exhaustion, a desperate hope for life to go back to BEFORE. I wanted to give up. I wanted to push all the angst away. We had to keep fighting but I couldn’t imagine how Dad had any strength left to fight another day.
“Daylight save me all my head like I’ve had enough / Of all the changes I’ve been through lately”
“Daylight save me again ‘cause I feel like giving up / On all of the places I’ve been to lately”
“You and I were like the weather / You and I, like sun and rain / White flag I surrender / Maybe now we’ll find a way / But we’re not still together”
“Daylight save me again ‘cause I know I can’t keep it up / With all the faces I see through lately”
“But we’re not still together / We’re not the same”
“‘Cause nothing lasts forever / Been so long”
“We deny it when you’re losing me / I’m losing you through the night into the break of day”
“Because it’s been so dark so long / I can’t tell what’s going on / Two hearts beat together / A single flame / But we’re not still together”
Do You Ever – 7 by Seal
I had no idea on the morning of February 29th that my life course would be forever altered. I had no idea of the changes that lay ahead and the time and energy it would take to pick my life up again.
“Do you find every now and then / You’ll be somewhere and your life is not the same”
“It’s gonna take some time / We got to know that what we did is real / I’m away, this time going to pick my life up again / Sowing what we reap is real”
“In the middle of the masquerade there’s a clown to see / Everybody’s laughing / Wears his frown upside down / So he can save the tears / For when he cries himself to sleep”
Echad B’Echad – Sanctuary by YofiYah
We are all one. We are all part of the same Source. Everything we do affects one another. It is important to remember that we do to others, we do to ourselves.
“One into one / One becomes one”
Every Time I’m With You – 7 by Seal
I felt my heart breaking every day as his decline hastened. This man who was so different from me, and yet so much the cause of who I am today.
“There is so much at stake / Hearts too soft to break / But we don’t need to go there / Cause we’re like summer and rain / You and I are not the same / That’s what makes it perfect”
Good Life – Waking Up by OneRepublic
Dad often counted his blessings fully. He reminded the entire family to count our blessings and to be grateful for the great life we had been given.
“We have our stories but please tell me / What there is to complain about”
“When you’re happy like a fool, let it take you over / When everything is out you gotta take it in”
“Oh, this has gotta be the good life / This could really be a good life, good life”
“I say, ‘Oh, got this feeling that you can’t fight’”
“Hopelessly I feel like there might be something that I’ll miss / Hopelessly I feel like the window closes oh so quick”
“Hopelessly I’m taking a mental picture of you now / ‘Cause hopelessly the hope is we have so much to feel good about”
Human Beings – Seal: Best 1991-2004 by Seal
The answer is always love. Whether we are living or dying. Love will give us peace of heart and connect us all. This song reinforced that to me. It reminded me we are finite in our bodies, but infinite in our souls.
“It is only love I feel that will give us peace of heart / In my hour of desperate need I feel closer to the One / Oh but why?”
“Tell me is it death you feel that will bring you peace of life?”
“We’re mere human beings we die; It’s destined”
I’m Alive by Seal
I knew I would survive this crisis, but when it became evident that Dad would not, this song became my prayer to God to help me keep going, to keep moving forward, to do all that I needed to do to be there for Mom and Dad in the worst moment of their lives.
“Fell on my feet this morning / Two angels heard me cry /This is your fate hereafter”
“The future is my friend / It hurts, but it treats me well / Take hold and be its master”
“I’m alive, older and strong / Let me be someone / I’ll take hold and be its master”
“So many parts that I have to play / A tangle with life set me up that way / Now I know these are the words that I have to say / Won’t you let me / Won’t you hear me cry”
Immaculate – System by Seal
I walked through each day not knowing what to be fearful of and what to simply accept. I needed to see God’s love and I needed my Dad. I wanted to take Dad by the hand and leave the hospital and just live in a dream where everything was ok.
“If all the world could see your smile”
“I walked through day / What should I might fear / Word can’t describe this love I need”
“But now I testify before you now / No wasting time / No waiting then”
“I don’t wanna lose control when it comes to rains / I don’t wanna be the one to never seize the day / I want you to come with me break away from the unnatural”
“We were living for the world / Living in a dream”
Latch (feat. Sam Smith) – Settle by Disclosure
I didn’t want to let go of Dad. In life, or in death, I found it very difficult to let go. I only wanted to hold onto him even more tightly. I didn’t want to lose my Daddy.
“You lift my heart up when the rest of me is down / You, you enchant me even when you’re not around / If there are boundaries I will try to knock them down / I’m latching on, babe, now I know what I have found”
“Now I’ve got you in my space, I won’t let go of you / Got you shackled in my embrace, I’m latching onto you “
“I’m latching onto you (I’m latchin’ on) / I won’t let go of you (I won’t let go, I’m latching onto you / I won’t let go of you”
Letting Go – 6: Commitment by Seal
I knew I needed to let go. But God, it hurt.
“Always a feeling inside every time that you go / Letting go “
Life in Technicolor – Viva la Vida or Death and All His Friends by Coldplay
Dad was in the hospital from February 29th through March 26th – during those days, we saw snow, rain and sunshine from his window. The sirens from the ambulances would ring through occasionally. Death was approaching and we could do nothing to stop it. And yet, we found beauty in the most common moments. Miracles happened in that room every week. Just not necessarily the miracles we were asking for.
“There’s a wild wind blowing down the corner of my street”
“I could hear rain coming, I could hear the sirens sound / Now my feet won’t touch the ground”
“Time came a-creeping, oh, and time’s a loaded gun / Every road is a ray of light / It goes on, time only can lead you on”
“Still, it’s such a beautiful night”
Life on the Dancefloor – 7 by Seal
Dad’s strength and determination during this crisis astounded me at times. His character strength played a significant role in living as long as he did. Each day and night brought challenges for us to focus on.
“You’re the angel that I can be / You amaze me”
“Hold on tight that I get it right / When you take a night / (For whatever it gives to me) / Hold on tight / Let it go all right / But I’ll get it right”
“Life on the dancefloor / Here we go / Once again / ‘Til the end / Life on the dancefloor / Here we go / Once again / Life . . .”
“Come on baby I can understand / I feel your heartbeat”
Low – X & Y – by Coldplay
Dad’s perception of the world and mine were not always in sync. We definitely didn’t always live in perfect symmetry, but we did the best we could. In the end, in those final 26 days and nights, we shared the priceless moments filled that only impending death surrounded by pure love can bring forth.
“You see the world in black and white / No color or light / You think you’ll never get it right / But you’re wrong, you might”
“The sky could fall, could fall on me / The parting of the sea / But you mean more, mean more to me than any color I can see”
“All you ever wanted to be / Living in perfect symmetry”
“You see the world in black and white / Not painted right”
“Don’t you wanna see it? Come soon / Floating in a big white balloon / Or given on your own silver spoon”
“Don’t you wanna see it come down there for throwing your arms around / And say, ‘You’re not a moment too soon’”
Mad Word – The Passion – Seal
It was hard to reconcile the outside world with what was happening in Dad’s hospital room. I couldn’t connect with people angry at a slow grocery clerk. I didn’t care about the political turmoil of our country. I just wanted Dad to be able to breathe.
“And I find it kind of funny, kind of sad / I find it hard to tell you, I find it hard to take where people are running in circles / It’s a mad world.”
“All around me are familiar faces, worn out places, worn out faces / Bright and early for the daily races going nowhere, going nowhere / Their tears are filling up their glasses
/ No expression, no expression / Hide my head I wanna drown my sorrow / No tomorrow, no tomorrow”
“And I find it kind of funny, I find it kind of sad / The dreams in which I’m dying are the best I’ve ever had / I find it hard to tell you / I find it hard to take when people run in circles / It’s a very, very mad world, mad world”
Newborn Friend – Seal II by Seal
No matter what I do, the world will go on. I can renew my faith, I can meditate and chant, but I can’t change the ending. I can only change my perspective.
“I wash my faith in dirty water ‘cause it gives my mind a little order / And I play that game, just like I should do but my whole world, slips away”
“I live my life, I live it slowly and I take my time, I’m in no hurry / I’m livin’ and when I go then I would surely / I would dance with a total stranger and hold them in my arms / Hell, there could be no danger if I open up ’cause when the cryin’ starts”
“If I chant for happiness, maybe that will make me feel better / I can’t change my ideals, I can’t lose my desire / Oh, if I chant for happiness, maybe that will make me feel better / I’d be your newborn friend for the world”
“Well, I wash my face in dirty water / For life I have no order ‘cause I know that feeling when you’ve tried to make your way out nothing mends so you search for the breed of the problems there lying deep down in the soul and if, they never end”
“Here’s a whole bunch of reasons, tryin’ to get out but they can’t make it out of the door /
Oh, I know the reason, I’m not enough / There’s nothing more”
“If I chant for happiness, maybe that will make me feel better / I can’t changes my ideals, I can’t put out the fire / Oh, if I chant for happiness, maybe that will bring us together for the better/ I can’t changes my ideals, I can’t lose my desire / I’m just a newborn friend for the world”
New Day – Girl on Fire by Alicia Keyes
This was my theme song after a long night in Dad’s room. I had to revitalize, refocus and get us ready to fight again. The percussion in this song totally rocks.
“It’s a new day, it’s a new day / The world is getting ready, everybody’s ready for a new day, for a new day / Celebrate!”
“It’s alright to feel however you want to / There’s no limitation no / Fill up your life, let me see your hands up one time / I celebrate mine, cause I ain’t gonna get no more / So we can do this all night one time”
“There’s a feeling that I got that I can’t give up / Feeling in my heart that I can’t get over
I know that it’s coming let the sun come up / Tell me do you feel the same”
“Take a look in my eyes, can’t you see I’m ready / Come along, let’s get it / If you wanna touch the sky, hands in the air one time / All night, and all day / I’mma live it loud like there’s only one life / Left to live it up, one life left to live it up”
“Clock’s on the wall / It’s now or never at all / I’m gonna give it my all / Whether I rise or fall / I’m gonna give it my all”
Open Water – The Alchemy Index: Vol. 1 & 2: Fire Water by Thrice
This song took me under. At times, I already felt as though I was drowning with fear. This song validated the fear and gave me strength to keep trying. God giveth and God taketh away. I was desperately trying to keep Him from taking Dad away.
“The open water chills me to my bones but it’s the only place that I feel alive”
“The ocean floor begins to disappear / I sense that terrible depth / The open water is my only fear but I’ll sail as long as I still have breath in me”
“I’m starting to believe the ocean’s much like you ‘cause it gives and it takes away”
“Between the devil and the deep blue sea I stare into the abyss / The open water is an awful thing but I’m anxious till the anchor is aweigh”
Padded Cell – 7 by Seal
Combination of knowing how many people relied on Dad and he took that responsibility so very seriously. He spent much time at work because he felt it was his duty to God and to his community.
The last line reminded me that I had thought of other options in my own life, but I choose instead to live. I needed Dad to choose to live and fight another day as well.
“Come in Mr. Samuel. How would you describe yourself? / I live my life, I live my life / I live my life, I’m a trusted man / Many people confused me but I’m a very good hand”
I’m a real estate / You can live on me / Always there when you need me / Anybody can see”
“I live my life, in the attic room / It’s 150, but I could hold my cool while the people downstairs they all depend on me / Always there when they need me / But you know it ain’t easy”
“I must admit that I, I thought about the other way but I live and fight another day”
Perfect Moment – Gentle Land by Peter Gabriel Byrne
Within so many fear filled moments, I had many perfect moments with Dad in those final 26 days and nights.
“Once in a while you will reach for that perfect moment and that moment is yours / And you’ll see, you will see, at its essence and feel the fullness of life”
“Hold onto that moment / Don’t let it slip from your grasp / Remember the feeling, this feeling, oh, if you can make it last”
Pictures of You – Pictures of You by The Last Goodnight
We taped photos up all around Dad’s hospital room of our trip to Turks and Caicos. We wanted to give him something to look forward to, to want to do again. The pictures brought great joy to Dad. Now, the photos offer comfort to the survivors. The daily battle against infection was like a boxing match, desperately trying to find the cause and the cure.
“Pictures of you, pictures of me / Hung up on your wall for the world to see / Pictures of you, pictures of me / Remind us all of what we used to be”
“Confess to me every secret moment, every stolen promise you believe / Confess to me, all that lies between us, all that lies between you and me”
“We are the boxers in the ring / We are the bells that never sing / There is a title we can’t win no matter how hard we must swing”
Rolling – System by Seal
We couldn’t get a diagnosis from the doctors or find the source of the sepsis. Every morning when I rolled out of bed, I prayed for a clarity of diagnosis. Each day in the hospital felt like 17 months of a year.
I knew Dad wanted to live and I wanted to do all I could to help him achieve his goal. When it became clear that would not happen, I asked God to lead him home.
“All my life I’ve been selling the truth of a lifeless soul / All my life I’ve been waiting for something to lead me home”
“You haven’t seen what I saw17 months a year when it rained / By all the power in me I do what I have to now”
“Rolling out of my bed I still can’t find the truth I’ve been searching for”
“They see the trouble with me is that I’m one who knows but I just don’t understand / Rolling back my head I think I’ve learned that I do wanna live again”
“All my friends they’ve been telling me you are the kindred soul / All my friends if they only knew who I was before but they haven’t been where I’ve been 17 months a year /
That’s such a normal place I don’t wanna live in fear”
“So I tried to go on / Still I’d like to go on in this world / Well, that’s life, we go on / Life will go on in this world”
“And they see the trouble with me is that I’m one who knows but now I understand / Rolling back my head I think I’ve learned that I do wanna live again / I still wanna live again”
“All my life I’ve been telling the truth of a lifeless soul / All my life I’ve been waiting for something to lead me home”
Silence – 6: Commitment by Seal
It was the silence that was hard to accept at times. When Dad could no longer speak, when words didn’t communicate. When all we had were prayers.
Silence is cruel and bright when you’ve been up all night / Silence can’t be any louder when you’re gone / How can it be any louder when you’re gone? / I have this need for love and dreaming is not enough / Baby it’s three in the morning and sleep is not easy.
Silence in your voice screaming I have no choice cause I’m angry, Angry and lonely
Square One – X & Y by Coldplay
Dad, I know you want to live, so you have to fight. Fight, and you will survive. What do you need to fight? Tell me and I will get it for you, do it for you. Just tell me what you need and I’ll be here for you.
“You’re in control, is there anywhere you wanna go? / You’re in control, is there anything you wanna know? / The future’s for discovering, the space in which we’re traveling”
“From the top of the first page to the end of the last day / From the start in your own way / You just want somebody listening to what you say / It doesn’t matter who you are”
“Under the surface, trying to break through deciphering the codes in you / I need a compass, draw me a map / I’m on the top, I can’t get back”
“First line of the first page to the end of the last place / You were looking from the start in your own way”
Take it All – 21 by Adele
Realizing that he was dying and there was nothing left to do . . . .
“Didn’t I give it all? / Tried my best / Gave you everything I had / Everything and no less / Didn’t I do it right? / Did I let you down?”
“Still how can you walk away from all my tears? / It’s gonna be an empty road without me right here / But go on and take it / Take it all with you / Don’t look back at this crumbling fool”
“Just take it all with my love / Take it all with my love””
Thy Will Be Done– SongVersation by India.Arie
My daily prayer before during and after Dad’s illness and death.
“Let my hands be used, to build and not destroy. / Let my words speak truth to every girl and boy / Make my feet to go wherever there is need / Let my light so glow, that all may see you in me.”
“Thy will be done on earth as it is in heaven / Thy will be done, lord, Thy kingdom come.”
“May I have clarity of mind that the righteous path has seen / Let me see the God in every living thing / Let me use my art for the healing of humanity / Let me live my life that with every breath I breathe, Thy will be done.”
“Fire burn, burn my pride / Fire burn, blaze it!”
Walking on Dream – Empire of the Sun
Sometimes, I felt as though my soul connected with Dad’s and we roamed wherever we wanted to go. I was indeed in awe of all in front of me. As our souls connected in these journeys, it was like the best dream ever.
“Walking on a dream / How can I explain? / Talking to myself / Will I see again?”
“We are always running for the thrill of it, thrill of it / Always pushing up the hill searching for the thrill of it”
“On and on and on we are calling out and out again / Never looking down I’m just in awe of what’s in front of me”
“Is it real now? / When two people become one / I can feel it when two people become one”
“Thought I’d never see the love you found in me / Now it’s changing all the time / Living in a rhythm where the minute’s working overtime”
“Don’t stop, just keep going on / I’m your shoulder, lean upon / So come on, deliver from inside / All we got is tonight / That is right ’til first light”
Who Wants to Live Forever by Seal
Not knowing if Dad would survive this crisis, I did my best to find the sweet moments at every possible turn. I needed to have those memories to hold onto forever.
“Who wants to live forever / No one / There’s no chance for us / It’s all decided for us / This world has only one sweet moment set aside for us”
“When love must die / But touch my tears with your lips / Touch my world with your fingertips and we can love forever and we can have forever / Forever is ours today”
“We only have one chance to live”
Yes, we only have one chance to live. Remember that before the harsh words pass through your lips. Remember that if you haven’t spoken of love yet today. Remember that when you see a stranger in need of help. We only have one chance. Take it. Take the chance every day that you are alive. Make it count.
Dad and I struggled at times to develop our relationship. It was a rocky road at times. We both held onto our own demons at times. But in those final 26 days and nights, when it was just family members, I witnessed the most amazing miracles. I witnessed Dad transform as he prepared for death. I witnessed the love among 17 individuals strengthen like steel. I witnessed final moments, funny moments. I offered Dad what I knew to help him make this final departure. Because of his deep love for me, he allowed me to become his teacher and his guide.
Dad’s body is gone, but his soul continues in this realm and another. He is still with me, but in ways I find impossible to scribe onto paper. For now, these songs keep him close to me and remind me of the many miracles we witnessed and were a part of.
July 31, 2016
My Play List During Dad’s Final 26 Days – Part 1 – The Instrumentals
PART 1 – The Instrumentals
During Dad’s 26 days and nights in the hospital, I listened to particular songs depending on what I needed. The music helped close out the hospital noises, helped me calm my breathing and anxiety, and it gave me a place for my emotions to connect and feel safe.
This music transcended me at times. It felt as though I was talking to Dad in some of the songs, giving words to emotions that were so strong, I wasn’t sure I could survive the pain.
Some of the songs were significant in their melodic tone, some were because of the specific lyrics, and some, because they allowed my tears to flow more easily. And some were my simple prayers to God, pleading for Him to heal Dad.
Some of us connect through words, some through deeds and others through music.
In my pain, when I couldn’t find my words, these songs found them for me.
I probably should have researched what each of these songs meant to the songwriters, but at the time I was choosing them, it didn’t matter. What mattered was how I could maintain hope, a sense of balance, and my connection to Dad.
These are the songs that ended up on my list.
The Instrumentals
A Change in Circumstance – Secret Story by Pat Metheny
The name of this song is what intrigued me originally. It was my ironic understatement for what was transpiring. The entire family always thought Mom would die before Dad solely based on her extensive medical history of strokes. The first two weeks of Dad’s medical crisis, we were all in shock and disbelief that this was actually happening.
Cathedral in a Suitcase – Secret Story by Pat Metheny
This song is what Heaven looks like: grand, opulent, vibrant, joyous.
Epilogue: Writing in the Darkness II – Spiritland by Andrey Cachelero
I found this song a few years ago when I had writer’s block. It took me to that dark place and let me walk around in it instead of just being afraid of and intimidated by it. And then it brought me to the light. And I could write again. It has a haunting element to it, but I think each of our lives has haunted moments. I kept hoping the song would allow Dad and me to walk in this darkness together, and then bring us into the light and to healing.
Facing West – Secret Story by Pat Metheny
In some manner, this song brings me home to the Southwest. One of Dad’s favorite places to watch the sun set was Albuquerque, New Mexico. He regaled the brilliant purples, pinks, and oranges reflecting on Sandia Mountain. He always smiled when recollecting those sunsets. He too, felt it was a magical place. This song takes me back there with vitality, vigor, vivid color, and hope.
The Gift of Time – The Gift of Time by Jean-Luc Ponty
Dad introduced me to Jean-Luc Ponty’s music in the 1970s. Dad tended to be a classic jazz guy, and my uneducated musical insight tells me there is a bit of a jazz base within this song. We both loved it. I kept praying to God to give us more time with Dad. This song helped me believe we would have that time.
Interlude – Growth & Progress by Andy Frasco
This song reminded me that each phase of Dad’s crisis was connected. If I could connect each phase with a calming, peaceful interlude, it might help us ease into the next crisis with a better grounding and faith in miracles.
Introspective Perceptions – The Gift of Time by Jean-Luc Ponty
This song connected me to Dad’s soul.
New Mexico – Can You Hear it Ring? by Glen Kuykendall
I went to high school with Glen. I didn’t know him well, but a classmate reintroduced me to his music and I fell in love with it. Jeff and I spent a few weeks driving all over New Mexico, without any itinerary. It was one of the best vacations of our lives. No radio, no set plans, just out driving and turning wherever we felt the urge. Glen’s musicality captures the open spaces that lay before us.
The Orchard – Phenomenon by Thomas Newman
The movie this song is from always resonated with me, which is probably why the song does as well. Again, great percussion throughout which gave me a foundation of strength, hope and determination. It reaffirmed my belief in the inexplicable, unexplainable and unlanguageable.
Other Nature – Cloudland by Whitetree
This gave me a palatable pace to keep to. Not too fast, sometimes it quickened and then slowed, crescendos and softening as needed. It seemed to fit what was happening at the time, but it soothed my fears.
Our Healing Flowers – Aromatherapy by Llewellyn
This song was my most often prayer request to God to heal Dad’s lungs. The melody made it easy for me to visualize and offer my healing energy to Dad, sprinkling healing fairy dust around the room and surrounding him with light and love. I could also envision Dad’s angels protecting him and comforting him.
Prelude Oculus – Oculus by Paul Speer
The beginning of this upbeat song drove me to action, to determination. It helped me maintain focus and rhythm.
The Room – Cloudland – by Whitetree
I saw myself in this room with Dad’s soul; quiet, simple, at ease. No bustling hospital noises, no alarms, just our souls resting and restoring to fight the sepsis again the next day.
Sacred Place – Yin-Yang by Victor Wooten
I was introduced to Victor Wooten when Jeff and I went to Wolftrap Park for the Performing Arts to see Bela Fleck and the Flecktones. Victor was the bass player and nothing short of phenomenal. Again, an old high school acquaintance reminded me of Victor and directed me to his solo music. This song brought me solace, sacredness, and security. It was my quiet prayer to God to please heal Dad.
Sacred Silence / The Jam Man – Live in America by Victor Wooten
This guy can play the bass better than anyone else I have ever seen. This song reminds me of watching him on stage, totally into the music. It gave me focus and a smile to listen to Victor shred those chords.
Stillpoint – Healing Music Project Awakening by Steven Halpern
The repetition in this song calmed my anxiety. The melody offered me hope for Dad’s healing.
Tangerine – Cloudland by Whitetree
The discordance here validated the trauma happening with Dad. I was on unsure footing and desperately trying to find a new balance. Out of the discordance came a frequency I could attach to and stabilize. The pace is strong, reliable, and defiant in a way that I thought Dad might defy the odds of his final outcome. The percussion added to the defiance and determination.
Taos Hum – Southwest by Nancy Rumbel
Taos, New Mexico is also a transformational place for me, instrumental in getting me on the road to being a published author and reawakening my spirituality. This song from the Land of Enchantment brought me back to the magic, spirit, and hope for healing and happiness.
Taos – Homecoming by Ken Bonfield
The repetition in this song calmed my breathing and eased my anxiety. Again, Taos holds great magic for my heart and this song brought me back there to experience the double rainbows, the spectacular sunsets, and the spiritual awakenings.
Walking in the Air from “Snow Man” by Mari Fujiwara
Childlike, happy smiles, connection. This song also brought memories of seeing the Grand Canyon with Mom and Dad. The tremendous energy, vistas and greatness of the Canyon resonates with me almost 50 years later from the first time I saw it.
The Wind Forest from “My Neighbor Totoro” by Mari Fujiwara
Gave me hope that our struggle would end on a happy note.
White Sands – Woven Cord by Iona
Dad’s career in military defense began at White Sands, New Mexico. I have wonderful memories of playing there with my sisters and Mom as a young child. Decades later, I went back and experienced a significant spiritual awakening on each of the four times I went. White Sands is where I decided to write my first book and finally begin my career as a published author. I felt an emotional connection to Dad at White Sands and in this song.
Part 2 – The Songs with Words – coming soon.
July 24, 2016
Dad and Me, Ten Years Later
I wrote the following piece for Dad for Father’s Day, 2006. I found it in his files the week before this past Father’s Day among other pieces I had written. I didn’t have the courage to post it until today.
Dad And Me
June 18, 2006 – Father’s Day
I am very fortunate to have two loving parents who provided me with a ‘normal’ upbringing. Some of the threads that, together, form my ‘fabric,’ include my childhood memories. On this Father’s Day, I thought you might want to see what I saw and what I remember of you and me.
You were a corporate executive, working six days a week for 30 years. So while the hours that I saw you were more limited than those with mom, I still hold many glimpses of my childhood (and adulthood) like photographs of our relationship.
Memories from Texas:
– I wasn’t more than five years old. You came home from work; I ran up to you, quite pleased with myself, announcing, “Dad! I learned a new word today!” You were putting your coat away in the closet. I think it was your suit jacket. But you were just putting it on the hanger and putting it into the closet when you replied, “You did?! What is it?” With my excitement just beyond containment, I proudly enunciated, “Damn!” The color drained from your face, your smile evaporated. I don’t remember what you said after that, but I remember being puzzled by the look on your face.
– You held me over the wall of the dam so I could see the water coming out while Mom shrieked, “Earle, put her down. Earle, this isn’t safe.”
– I remember standing in a Baskin-Robbins ice cream store; we all got to order double scoops. I got chocolate mint chip. The total cost was less than one dollar. I remember you paying with that dollar bill and getting change back.
– I remember standing outside of our car, looking at the Grand Canyon. It is just one view that I remember, but I remember you standing in front of me, to the side, looking into the canyon too.
– Rolling down the endless hills of White Sands.
– “Don’t tickle me on my stomach . . . .”
Memories from our move to Virginia through my teens:
– The whole family going to Wolftrap to see the Carpenters – it was the first concert that I ever remember seeing.
– When you would pin me on the living room floor and count my ribs. And then you had to start over . . .
– Jitterbugging in our living room. Four women, one man . . . we wore you out but you never stopped smiling.
– The way your Southern drawl strengthened after our vacations in Auburn.
– On one of our visits to Myrtlewood, you helped set up the tables and chairs in the living room where we were going to eat Sunday dinner. I remember watching you that afternoon, sitting in the circle, chatting with your parents, aunts, uncles, and I’m not sure whom else, catching up on all the extended family and friends. It developed into my definition of a typical Southern Sunday with family. And it was a wonderful example of a loving family.
– At those Myrtlewood dinners, you eagerly took second helpings of the okra. Disgusting.
– Your look of childlike excitement when Grandma made homemade peach ice cream. I didn’t like peach ice cream at the time, but I liked the look on your face. Your eyes were years younger when you ate her peach ice cream; and the next morning, when we ate fresh peaches and cream.
– “The look” you gave us in the car when the three daughters were doing something in the back seat that you didn’t want us doing. We knew we were in trouble when we got “the look.”
– “The look” we got when we couldn’t stop giggling in church (Mom included).
– The countless times that I would be in tears and you would reassure me that I didn’t have to be perfect; I just had to try my best.
– Coming in from mowing the yard (a task that you obviously despised) on an especially hot day, you came to the kitchen, opened the refrigerator, popped open a Coors beer, and drank it while the refrigerator door was still open. You drank beer so rarely, but you enjoyed every sip of that cold, cold beer.
– Hearing you laugh when you watched “M*A*S*H” and “All in the Family” on television. I wasn’t allowed to watch those shows and I would sit upstairs trying to figure out what could be so funny.
– The day you came into my 7th grade Social Studies class with Mrs. Ramey so you could tell the class the correct version of the Civil War.
– Coming out of church one Sunday, you walked up behind me and poked me in the back, saying, “Stand up straight! Stop slouching!” Thirty years later, you remind me that I am still slouching and I still need to stand up straight.
– When you told me on my 18th birthday that I was adopted. And then your menacing grin at Mom’s shriek.
– The moment that Jimmy Wade called and told you that his father had died. Your face went from happy to hear from him to questioning why he would call instead of his mom or dad, realizing why he was calling, and then the sheer grief you felt. You dropped your head into your hands. It was just you and I in the bedroom when you answered the phone. I felt utterly helpless.
– The countless nights you spent helping me with my math homework. First, you had to figure out the answer to the problem, and then you had to figure out how the teacher did it so you could explain it to me. Night after night you helped me.
– When you told me that you and Mom were giving me $2000 for retirement so I could learn how to invest and save money. Well, you tried.
– Every single time you said, “Make sure that anything you put into writing, you won’t be embarrassed if it is printed on the front page of the Washington Post.”
– When you gave me money for my good grades.
– Watching you grill the Porterhouse steaks for Sunday dinner, careful to time each side exactly; I mean, exactly.
– While we were touring the old Air & Space Museum (in the 1970s), you showed me a rocket that you helped design. It was the first time that I had any idea of what you did at work. Even then, I had no idea of what you did, what you contributed to the defeat of communism and protection of democracy.
– Every time I said, “’They say’ . . .” you responded, “Who is ‘they’?” Be specific! Know who ‘they’ are!”
– When you came home from work and I had stayed home with bad cramps, you would bring me a Rum and Coke.
– The night Ronald Reagan won the presidential election, you absolutely howled, slapping your hand on your thigh, elated, joyful, ecstatic.
– When Mom made a dish that you particularly liked, at the dinner table, you would say, “Now DON’T change the recipe! DON’T change a thing!” And then your frustrated acceptance when she would make it again, but she had changed the recipe.
– Celebrating the 4th of July at the Blackburn’s house, setting off firecrackers with Supreme Court Justice Byron White participating.
– When we studied World War II, you emphasized to me the importance of learning what the Nazis did. You said it was important to learn about it, acknowledge it so that we would never allow a horror like that to happen again.
– When I came to your office, you would race around trying to get just one or two more items resolved before we left. I do the exact same thing in the exact same way. Genetics.
– The day you arranged for me to meet with your consultants learning about neuro-linguistics.
– The interview time you arranged for me with Don Blackburn to hear about his years in the Philippines, evading the Japanese, waiting for General McArthur’s return.
Memories from my early 20s:
– The moment you saw me in my first wedding dress. Your pain was obvious, but you did your best. You walked me down the aisle and made a young girl’s dreams come true.
– The hug you gave me when I walked off the plane from Okinawa. The relief you felt was palpable.
– The moment when you walked me down the aisle the last time, stopping to wipe a tear from my cheek. Your love for me exuded from your pores during that walk. We took that walk slowly and with joy.
Memories from my more sensible 20s and onward:
– Going to Wolftrap together and seeing Pat Metheny in concert. You don’t like Pat Metheny, but you came with me anyway!
– When you told me your definition of a good friend (someone you can call in the middle of the night and ask them to bring you $100; they bring you the $100 and they don’t ask why) and the fact that you have few friends. It enlightened me to how you view people, whom you trust. At the time, you were talking about Red Hofer (one of your good friends).
– The love and attention you paid to my cat Charley, even though you don’t really like cats. And even though you don’t really like them, Charley loved you and adored you more than anyone else.
– After we talked about my decision to marry Jeff, your last words in that discussion were, “And Sharon, I can’t believe it, he even cooks!”
– Taking time out from the campaign trail, you took your grandson, Stephen, into your arms for the first time in the NICU at Children’s Hospital. Your tenderness, your fear, your joy, your love, your hope . . . you exhibited all of these emotions all once.
– During the first 48 hours of Mom’s stroke, I walked into the kitchen; you were looking out at the Gulf. When you turned around, tears were falling down your grief-stricken, panicked face. You said, “I can’t lose her. I can’t live without her.” It was another time when I felt utterly helpless. All I could do was hug you and cry with you.
– The silent commutes down Crayton Blvd. to and from the hospital the first few days after Mom’s stroke; holding hands as we walked into and out of the hospital.
– The first time I saw you cooking lunch in the kitchen. I had never seen you make an entire meal. It was also the first time I ever saw you unload the dishwasher.
– On your 70th birthday, your face looked gray; literally gray. When I saw you the very next day, your face showed relief, joy, happiness. The dichotomy was resounding.
Memories that transcend all ages, all places, all time:
– When you repeatedly told me “You can do anything you want to do; you can be anything you want to be.”
– The respect you always showed your parents.
– The countless times you showed humility.
– The countless times you were gracious and inviting to everyone around you.
– When you shake hands with someone you haven’t seen in awhile and they are a good friend; you grab their arm with your left hand and your eyes are particularly bright. Your smile is more relaxed when you greet a good friend.
– Holding the door open for me.
– The way your voice gets very serious at the beginning of a good joke. And the way your eyes light up at the punch line.
– The many times when you read the Birth of Jesus from the Bible on Christmas Eve.
– When we hold hands before dinner and you give the same Grace to God that you have said for 40+ years.
– “Gay, Car, Sharon . . . .”
I have many memories of you and me. Some are of just the two of us; some include the entire family and a few include friends. But each moment, each glimpse, whether happy or sad, is built on love. I hope these glimpses remind you of the many ways, the many times that you have shown your love for me, for our family.
You have led this family through the decades. You have held Mom at your side, but there is something in how a man leads his family. You have led by example and shown me what a good husband is and should be. Fortunately, the second time around, I listened! You have led our family with honor, love, faith, integrity, and honesty. Happy Father’s Day.
June 13, 2016
I Found a Tick, Now What?
You do NOT need to have the classic EM rash to be diagnosed with Lyme. See a doctor ASAP if you find an embedded tick.
This is a good item to file away and hold onto so that when you find a tick embedded, you will know your options:
This article is by Kathy Meyer – I was asked to re-post this by a friend due to the numbers of people getting tick bites. It can also be found easily, thanks to Catherine Fox, at https://lifelovelyme.com/2016/03/28/guest-post-what-to-do-if-you-find-a-tick/ –Kathy Meyer
INFORMATION ON TICK BITES
“…The physician cannot rely on a laboratory test or clinical finding at the time of the bite to definitely rule in or rule out Lyme Disease infection, so must use clinical judgment as to whether to use antibiotic prophylaxis. Testing the tick itself for the presence of the spirochete, even with PCR technology, is helpful but not 100% reliable.
An established infection by B. burgdorferi [the bacteria that causes Lyme] can have serious, long-standing, or permanent, and painful medical consequences, and be expensive to treat. Since the likelihood of harm arising from prophylactically applied anti-spirochetal antibiotics [taking antibiotics to kill potential infection] is low, and since treatment is inexpensive and painless, it follows that the risk benefit ratio favors tick bite prophylaxis.” -Dr. Joseph Burrascano, the longest-treating physician for Lyme in the U.S.
As the weather warms, there is justifiable panic in the question, “I just found a TICK on me, so what do I DO?!”
What I’ve concluded is that the only important question is, “Was the tick embedded and was it even a little puffy?”
If it is dug in and starting to exchange bodily fluids, just like unprotected sex and STDs, it may have given the patient a disease.
What to do next? I’m not qualified to give medical advice, but I’m grateful for the experienced Lyme specialists who have published their opinions. “I definitely advise treating tick bites. Waiting for symptoms is unwise,” says Dr. Steven Phillips in the Huffington Post this month. He says he starts treatment “within hours of the tick-bite.”
Treatment following a tick bite
As Dr. Burrascano notes above, a doctor can’t rely on testing or symptoms when it comes to a tick bite. There is no reliable test. He recommends the following:
TICK BITES – Embedded Deer Tick With No Signs or Symptoms of Lyme. Decide to treat based on the type of tick, whether it came from an endemic area, how it was removed, and length of attachment (anecdotally, as little as four hours of attachment can transmit pathogens). The risk of transmission is greater if the tick is engorged, or of it was removed improperly allowing the tick’s contents to spill into the bite wound. High-risk bites are treated as follows (remember the possibility of co-infection!):
1) Adults: Oral therapy for 28 days. Consider Doxycycline first in early Lyme due to concern for Ehrlichia co-infections. Doxycyline 200 mg bid with food
2) Pregnancy: Amoxicillin 1000 mg q6h for 6 weeks. Test for Babesia, Bartonella and Ehrlichia. Alternative: Cefuroxime axetil 1000 mg q12h for 6 weeks.
3) Young Children: Oral therapy for 28 days. Amoxicillin 50 mg/kg/day divided into q8h doses.
See Dr. Burrascano’s complete guidelines for detailed information or see the treatment guidelines published by the International Lyme and Associated Diseases Society (ILADS) at the same link.
[Reference: ADVANCED TOPICS IN LYME DISEASE DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES, Sixteenth Edition, Copyright October, 2008, JOSEPH J. BURRASCANO JR., M.D.]
Removing a tick
Use fine-tipped tweezers or shield your fingers with a tissue, paper towel, or rubber gloves when removing the tick; otherwise, infectious agents may enter your bloodstream through mucous membranes and/or breaks in the skin.
DO NOT use petroleum jelly, a hot match, nail polish, or other products to try to get the tick to let go.
Grasp the tick as close to the skin surface as possible and pull upward with steady,even pressure.
DO NOT twist or jerk the tick; this may cause the mouthparts to break off and remain in the skin.
DO NOT squeeze, crush, or puncture the body of the tick because its fluids may contain infectious organisms.
Tick Keys are also effective for removing an embedded tick.
After removing the tick, disinfect the bite site and wash your hands with soap and water[Reference: Health Department, Fairfax County, Virginia: “Tick Removal”]
Seek medical help
If you find an embedded tick, suspect a Lyme rash (not everyone gets a rash, and it may not appear like a bull’s-eye), and/or have flu-like symptoms after tick exposure (especially in summer months), If you are not under the care of a Lyme-literate doctor (LLMD), go to your local Urgent Care or Emergency Room and request a full course of antibiotics.
Testing for Lyme is typically negative in the first weeks after a tick-bite. If your doctor requires a test for Lyme during the first weeks, the only one shown to be accurate in early weeks was developed by George Mason University. It is not covered by insurance, but a kit can be ordered at http://www.ceresnano.com/#!nanotrap-lyme-test/c64d
(Remember, ticks carry many diseases in addition to Lyme, some only recently identified and some not yet identified, and waiting for test results to start antibiotics can place you at risk.)
For persistent symptoms, most LLMDs have wait times that are too long for urgent care, so get started on antibiotics for tick bites, rash or early symptoms of Lyme immediately and get on a wait-list for an LLMD if needed.
Prevention
The best scenario of all is no tick bites.
Avoid direct contact. Keep out of wooded and bushy areas with high grass and leaf litter, and walk in the center of trails. Learn how to maintain a tick-free yard. One resource: http://www.tickencounter.org/prevention/protect_your_yard
Use a repellent containing DEET. Repellents with DEET can be applied to exposed skin to help repel ticks. Follow the label instructions. Consumer Reports has also identified Repel with lemon eucalyptus or Sawyer with 20% picaridin as acceptable repellents.
Check your wardrobe. Wear long, loose-fitting, light-colored clothing. Wear long-sleeved shirts and long pants. Tuck your pants into your socks and your shirt into your pants so ticks don’t have easy access to your skin. It’s easier to see ticks when they are crawling on light-colored clothes. 
Use the chemical permethrin on your clothing. It is far more effective than just spraying repellents on your skin. Permethrin kills ticks and there are formulations to treat your clothes sold at sporting goods stores; follow the instructions given, and NEVER put on your skin, only on clothing and gear. Search online for permethrin-treated clothing, which is effective through as many as 70 washes. Here is one good site: http://www.bugbewear.com/
Check often for ticks. While outside, take breaks to check yourself for ticks. Bathe or shower as soon as possible after coming indoors (preferably within two hours) to wash off and more easily find ticks that are crawling on you. Do a thorough check at the end of the day; use a mirror or have someone help you check the hard-to-see places on your body.
Examine gear and pets. Ticks can ride into the home on clothing and pets, then attach to a person later, so carefully examine animals, coats, and backpacks. Dry clothes on high for 30 minutes BEFORE washing to kill any ticks you may not see.
Kathy Meyer
Parents of Children with Lyme Support Network
klizm@aol.com
May 4, 2016
Your Physician is Your Partner in Healing
In Lyme Savvy, we wrote: “The most important thing to remember during the appointment is your physician is your partner in healing.”
One month had been particularly bad for me and I couldn’t figure out why. Dr. Mozayeni started going through my medication list.
“Did you take ‘Treatment B’ every day?”
Blindsided.
I had completely forgotten to take the medication. Knowing honesty and mutual trust is a huge factor in the healing process I replied sheepishly, I replied, “No, I totally forgot.”
“Well, there you go. Titrate back up on it and you should start to feel a difference,” he replied.
Through the rest of the appointment, I was silently beating myself up for not remembering.
Finally, Dr. Mozayeni said, “Look, you forgot to take it. It’s over and done with. There is nothing you can do to change the past month. It was a bad month and now you know why. So move forward. Start back on it, and we’ll see how you feel in a few more weeks.” Over and done with.
Forget the shaming, and move on.
(this piece of advice is helpful in many other aspects of life as well)
That’s called teamwork. At the same time, if you disagree with a direction the protocol is taking, you need to speak up. If you don’t believe the next phase will work, then it definitely won’t. Do not waste your time and energy on something you don’t believe in.
If a physician is judging me during the time that I am paying him, then I need to change doctors. If I don’t feel safe in being honest with my physician, I need to change physicians.
HOWEVER, this does not excuse the patient from being compliant. There is a big difference between making a mistake and being non-compliant. If you don’t plan to follow through on the treatment protocol that your physician has set forth, then don’t come back. Find someone you feel you can work as a team with. It’s not worth it to waste anyone’s time.
Remember, your physician should be your biggest ally. He is on your team. He wants you to heal.
May 3, 2016
Mired in Muck
May 3, 2016
Today, I was going to write another inspiring, hopeful blog about #Lyme disease, encouraging all the patients out there that they too can heal.
I have an entire spreadsheet of quotes from Lyme Savvy that I want to write blog postings about to explain why we said what we said. I started a Word file with the first two days of blog postings. And then today happened.
I woke up in pain. It was hard to get moving.
I went to work and tried to update some software that took two and a half hours and I am still not done because it didn’t install where it said it was installing (and I have a professional who can back me up on that, it wasn’t just me reading something incorrectly). I had two computers and couldn’t use either one because of this damn software malfunction.
Then, I left to go to the Lyme doctor’s office. I got some TLC there, but it is emotionally and physically draining. Jeff has been driving me everywhere since Dad died. I’m not a safe driver right now for long distances.
The crying from grief attacks me at inopportune moments, like when I am on the road, or in the shower, or on a phone call with a client, or before we go to bed and the house is silent.
The phlebotomist fussed at me because I am dehydrated and it took her four sticks to get the iv in. She always gets me on the first try, even when I am dehydrated.
Jeff picked up lunch for me so when I got out of the appointment at 2 pm. I am so grateful for this man in my life.
I came home instead of going back to work because I was crying too hard from grief about Dad’s death.
I came home, turned on my laptop and it told me the Start Up Disk is FULL and it wouldn’t work. I spent three hours lying in bed, clearing files from my computer to try to get it to work. THREE HOURS.
I started to write this blog piece, trying to pull up the file from my thumb drive and the file is GONE. Now, it’s not one of the millions that I deleted for THREE HOURS because I purposely put it on the thumb drive. But it’s not there.
Then I called Mom, because I was going to call her starting at 4 pm and then I got distracted or teary, and then I forgot. Then I would remember, but her phone was busy. Then I forgot again, mired in the laptop muck. Then I remembered and she told me some issues she was having and I was crying on the other end silently because I don’t know how she even gets up in the morning without her best friend of 64 years.
I hung up the phone and started to write this blog and here is what you get.
My therapist told me I need to be ok with not having a lesson to learn, to just be in the experience. It’s the journey that is the lesson, not the destination. She said I need to just be in the grief. I need to not worry about writing something inspirational, or hopeful, or tidied up nice and neat.
“…I would like to beg you… to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.”
My therapist says Rilke is making the point that the answers are not available in the usual way that we might pursue the answer to a logical question because the circumstances of our lives are not based in logic, they are based in the process of the pursuit of living.
Rilke goes on to say: “Keep growing quietly and seriously throughout your whole development; you cannot disturb it more rudely than by looking outward and expecting from outside replies to questions that only your inmost feeling in your most hushed hour can perhaps answer.”
My therapist is wise and correct, but I am still angry.
Lyme disease and grief suck big time.
I’m afraid this grief won’t end; the depression will continue. I won’t get out of this. I will stay crazy like I was with the Bartonella. I don’t want to go back to that point. We have ALL worked too hard to get me here, before Dad’s death illness and death – after our #vacationofalifetime #thanksmomanddad trip to Turks and Caicos.
I want to keep healing and this definitely does not feel like healing. It feels like drowning. And it feels like crazy. I don’t do crazy well.
Before Dad’s illness and death, I was getting treatment from my LLMD that made me feel as though the depression was being extricated from my CELLS, the molecules. It was BEAUTIFUL It was lifting. I was BREATHING. It was new, refreshing, exciting. The start of a new year, a new life, healing. REAL HEALING.
And now I am mucking in the shit of grief. And I am still angry.
May 2, 2016
Non-Physicians Offering Their Opinion of Your Condition
May 2, 2016 –
May is Lyme Disease Awareness Month. I am pulling quotes from our about–to-be-released book Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners. I apologize for the delay in its publication. We had planned to be in print by May 1, but my father’s sudden illness and subsequent death pushed back the production schedule.
“Most people who will have an opinion about your condition are often non-physicians, with no medical expertise, who think somehow they are competent to assess you medically and make conclusions based upon that assessment.” – Dr. B. Robert Mozayeni, Lyme Savvy
I love this quote from Dr. Mozayeni. It sums up in just a few words, the idiocy and gall too many people around Lyme patients have. They don’t seem to have the same opinion about patients with cancer or diabetes. But Lyme patients often are seen as malingerers, lazy, over-emotional, deviant drug seekers – or some combination thereof.
It’s not even the point of just seeing a physician. Do you go see an internist for a brain tumor? No, you see a neurosurgeon. You need to be assessed by someone proficient in the field, a specialist who sees Lyme patients every day. Dr. Mozayeni reminds the patients and their families that the only person who should be assessing your medical condition is a Lyme Literate Medical Doctor.
It is also important to ask our physicians to start looking again for causation; not only to give us something to mask the symptoms. This is a key to healing. And too many physicians are being trained in merely resolving symptoms without looking for causation. It seems to be up to the patients to demand that deeper query.
It took me 29 years to find Dr. Mozayeni, to find a physician who acknowledged my symptoms as real, explained their cause and showed me how we would rid my body of this horrible disease.
Remember to keep the reality of your disease based on the assessment given to you by a Lyme Literate Medical Doctor (LLMD). Ignore what your brother in law, or neighbor, or co-worker might think. They are not the specialists in Lyme Disease.
To find a qualified Lyme Literate Medical Doctor, please visit: http://www.ilads.org/
