I Have A Big Ask

“Most of us don’t even life to ask for a ride. The idea of asking someone to be a living organ donor - to give a kidney or part of a liver - seems unthinkable.”

Friends, that subtitle sums up my big ask.1The idea of asking someone to be a living organ donor, is unthinkable, but here I am writing those words:

I Am Looking For A Living Donor for Both A Liver and A Kidney.

Do you know anyone who would be willing to donate a kidney or a part of a liver?

My Beloved Daughter Amy Needs Both.

She Needs A Liver and A Kidney Transplant.

Yes, it is true. It is still shocking to me as I write those words, but believe me, when it comes to one of your daughters needing something to save her life, it is an easy ask.

My beautiful girl, my beloved daughter Amy has been battling kidney disease for the last seven months. This spunky, brave girl of mine has courageously faced having her life upended by a disease that hit her suddenly and without warning just as 2023 was ending.

In the beginning, when she was finally diagnosed with kidney disease, her doctors believed that her condition was treatable. They believed, and so did we, that with the right medications and care, her kidney’s would recover.

Amy Hopfenspirger lane - January 20, 2024. This Photo was taken when Amy was in the hospital just before she was diagnosed with an autoimmune kidney disease.

She began kidney treatment protocols and medications earlier this year. Then, in February, she began receiving kidney dialysis three times a week. 

Unfortunately, the kidneys have not responded to treatment. Her wonderful nephrologist has told her that in his thirty years of practice, her case is one of the most complex cases he has ever seen.

Sadly, we now know that Amy will need not just a kidney transplant, she will also need a liver transplant. 

Now we need a match - a match made in heaven - a match that is compatible with Amy’s blood type. Compatible blood types for her are: A and O.

We are now focusing all of our efforts as a family to find two people out there with compatible blood types who are able to give her what she needs to live. 

This is no small ask.

Again, we need two live donors who will give my beautiful daughter a kidney and a portion of a liver.

I Take Comfort in Knowing There Are People Willing to Be Live Organ Donors.

According to OPTN (the Organ Procurement and Transplantation Network) one out of four people say they would be willing to donate an organ to family members, friends, or even to someone they’ve never met.

About 90 to 95 out of every 100 donors say they would not change anything about their decision to donate. They would go through all the screenings, tests, and the surgery. They would take time away from their lives, jobs, and other commitments to recover. They would do all of that to help someone.2

These past months have been incredibly hard. I’ve been amazed at how my daughter has taken it all in stride and continues to keep fighting the fight of her life. 

For her to win this battle, we need others to fight with her.

I will be forever grateful for all the medical doctors who have treated my precious daughter with such expertise and love over these last months. She loves her nephrologist, and has so much admiration and respect for him. You can be sure, I am indebted to him and her other care providers beyond ways I can find words to express.

In March, I was so grateful to celebrate Amy’s fiftieth birthday with her and her children. There have been many difficult days since March, but through it all, she keeps on doing all she can to get stronger day by day. 

It is inconceivable to be in this place where we as family find ourselves, but this is where we are. 

March 2024 - Amy’s 50th birthday. She is surrounded by her two children and me, her loving mom. People have always said she is my mini-me. 

More About Living Organ Donations

It is our good fortune to live in Colorado where one the foremost hospitals for organ transplants is located. Amy has been referred to the UC Health Transplant Center at the UC Health Anschutz Medical Campus in Denver, Colorado. They have the oldest and one of the largest transplant centers in the United States.3

A Call for Action:

If you, or someone you know would like to be a living donor, please direct them to this link:www.uchealthlivingdonor.org . 

There, those interested in helping us find both a kidney and a liver for Amy Hopfenspirger will find an online confidential health history questionnaire for living donors. All information will only be seen by the health professionals at UC Health. They are the ones who will be assessing all who offer a living transplant. Potential donor information and health is held in the highest regard by health professionals. 

Again, we are most grateful that Amy is in such wonderful hands at UC Health Transplant Center. We are also grateful for all who will join us in helping Amy find a new liver and a new kidney.

Amy has one of the biggest hearts I’ve ever known. She’s that one who makes cookies for all the neighbor kids or takes part of a meal to a neighbor who is sick. She is tender and empathetic and thinks of others and cries easily when she is touched by a kindness, a story, a need she see in others. 

She is my street smart, intuitive, straight-shooter. Quite honestly, some of the best advice I’ve ever had from anyone in my life has come from Amy. She’s witty, and oh so funny. Her smile is one of the biggest and most beautiful smiles I’ve ever seen. She hates for me to take her picture. but I sneak one now and again. 

amy

She also is very private. 

For many months, I have not been able to share Amy’s story with you because I had not been given her permission to do so. She has now given me her permission to share her story. In sharing her story, I ask you for your help in finding living donor who can save her life as she continues to fight the battle of her life.

Can you help us?

I don’t know how to do this alone. None of us do. We, all of us in my family, need others to surround us with love, prayers, and support. So many have already been doing that already. We are grateful. 

Please, now will you share her story far and wide? 

Will you join me in believing that just the right match is out there?

References

1

https://optn.transplant.hrsa.gov/patients/about-donation/living-donation/how-to-find-a-living-donor/#PB_SectionMarker_5

2

Ibid.

3

For more information about the transplant centers at UC Health please click on this link: https://www.uchealth.org/services/transplant-services/

Memoir Writing - The Process and The Purpose

I’m currently working on writing a memoir. Nearly every single day, I think I should abandon the project. It seems like such massive, overwhelming task. I often find myself wondering who cares anyway if I get the book written, or if I don’t.

I’ll be honest with you, dear readers, I am all over the place when it comes to writing this memoir of mine. I refer to it as “my damn book.”

Will I ever get it finished? I don’t know. Actually, a better question I find myself asking is, “What is the reason you want to put yourself through the agony of trying to write a memoir?”

For decades so many have told me, “You need to write a book.” For decades, I have said, “I hope to do that.” The decades have come and gone. So many decades! Frankly, the truth is staring me in the face: I’m running out of decades. If I don’t get this book written soon, I will be out of time and my life will be over. It seems the writing life does have an expiration date. My writing life dies when I do.

Hopefully, I can keep my cognition firing enough to do the work as I approach the end of my seventies. I hope to hold on to: the ability to form words into sentences that make sense. I search for: just the right combinations of words and sentences to create meaning. I hope to: use those words and sentences to convey a sense of story worthy of being read.

Sadly, I am very much aware that the abilities I once had when it comes critical thinking are not what they once were when I was younger. Age, illness, head injuries, and vestibular issues have left their mark when it come to my ability to read, write, and think as I once could.

Still, I press on. I hope to carry on and write with what I have left.

I feel as if my current project, my memoir, is one great big rolling and rambling narrative that is disconnected and discombobulated. It creates great dissonance within me as I try to makes sense of a story that at times makes no sense even to me, the one who lived the story. In time, perhaps I will be able to wrangle this story into something that makes sense to me and to any potential reader.

The writing process is still a mystery to me.

I don’t understand it at all.

My words seem to have a mind of their own when they present themselves on the paper. I see new insights. I have new questions. This part of the writing process slows me down, but if I don’t take the time to think, ponder, question, reflect, dig deeper, I know I will only wonder if I really got to real story I have to tell.

Why is it then so important to me for me to continue my work, to get the “damn book” written? I ask myself this question daily. This answer keeps coming back to me:

My words matter.

My story matters.

I own a pen, and I know how to use it.

I am the only one who can use that pen to write my story.

My story is mine alone to tell.

---

I always wanted to be an anthropologist, so now I get to be one. I am digging into the layers of lived experience to see what remains. I’m often surprised when I uncover fragments of truth about me, my family of origin, that I never saw or understood before. I see how each new discovery leads to new understanding of how I became who I am, who I was, or who I became, or who I thought I was.

A family portrait - Easter 1948

The backdrop for the photo is the house next door. We are all dressed up in our Sunday best. I remember the scratchy hat, the way that ribbon under my chin felt like it was choking me and I wanted to take it off! My mother loved hats; therefore, I wore one because she insisted. Thus began one of our early struggles about who I was and what I wanted to wear, and who she wanted me to be and how she wanted me to look.

I am discovering much about how I developed my identity: the one thrust upon me by others, and the one I have fought to establish as my own. Teasing apart the assumed identity that I adopted when I was a cult member and the one I adopted as I left the cult has been painful and liberating. Writing has allowed me to more fully identify who I really am.

Some call this work deconstruction. I was introduced to work of cultural deconstruction when I was working on my masters degree many years ago, so the work is not new to me, but I am realizing now just how much deconstruction I have to do in so many other areas of my life. I now prefer to call this work that I am doing as I write: excavation.

I am using my pen to excavate my life.

This excavation work is not for the faint of heart. I’m hauling out buckets and buckets of dirt and depositing them on the page as I write. I’m uncovering new truths, new insights, new understandings.

As I do that, I am reminded of my father as he dug out our basement one shovel full, one bucket full at a time when I was a child. He did this backbreaking work because he wanted to create more space for his family. He had a vision of what he could accomplish with all that digging, so he went to work and got it done.

My father a railroad man, and a man who loved and was well versed in Colorado mining and railroad history, was creative in that before he began the excavation work of digging out our basement, he rigged up a way to haul the earth from one place to another by building the same sort of structure that miner’s used to bring gold or silver from the depths of the earth.

We already had a small space beneath the house that was accessed by a by an old wooden cellar hatch door. He built a track that went from the ground level outside of our home to the lower basement level of our home. He then somehow acquired an old ore cart. The ore cart was on some sort of pulley system that allowed him to pull the cart up and down the track. Oh how I wish I had photos of the track, the ore cart, and my father, digging, digging, digging, hauling, hauling, hauling, but I don’t. I remember the time clearly, the images remain only in my mind.

Shovels full of sand and dirt were thrown in buckets, the buckets of sand were thrown into the cart, and then the cart was pulled to the ground level where it was dumped to create the biggest sand pile on the block. (We loved playing in that sand, as did all the neighborhood kids.)

How I wish my father had written more about that project. I wish I could read his words about how he accomplished that impressive feat of digging out a new room underneath our tiny house. All I have of that time is my memories of the project and end result: a room for my brother was built and finally my sister and I had our own bedroom to share.

---

Sally in 1949 at age four

I loved being outside playing in the yard behind my childhood home. Those lilac bushes sheltered me on many a summer afternoon as I played with my toys and made up stories of the pretend life I was living with my dolls and stuffed animals. I was known for my rich imagination. I lived mostly in my head even then.

I actually never intended to begin my memoir by writing about my childhood. Then one day, the memory of my father digging out that basement came to me. At the same time, I began to think of how my childhood home was literally built upon the sand. Suddenly, the whole focus of my memoir changed and I truly began the hard work of excavation into those early years.

As I’ve done some digging and some remembering. I’ve wondered if any of that part of my story will be interesting to even my children. Then, thanks to the memories section on FaceBook, I saw something my daughter had written to me the day after her birthday in 2009:

“Hi Mom. Thanks again for the great memories of the day I was born. Even though I’d heard all of the stories surrounding that time before, I’d forgotten many of them. It just goes to show the importance of writing down memories for future generations. Speaking of which, you should write some more about other dramatic moments in my life like being run over, splitting my head open the day of Suzanne’s wedding, Ryan throwing my “pantyhose” in the light fixture and them burning up, etc.
I’d completely forgotten how I liked to carry around your hot pink silky pajamas. When I was reading about them I had a distinct recollection of searching for them in the laundry room in Mt. Eyre. Funny, huh?
XO,
Keicha”

— FaceBook Entry by Keicha Christiansen January 26, 2009

“It just goes to show the importance of writing down memories for future generations.”

That is why I write. I’m doing this for my children, my grandchildren, those who come after me. It is the one legacy I have to give them: my story.

Today, I finished reading a short memoir of sorts that my father wrote. He began by writing about the home where he lived during his childhood. I just happened to come across it as I was going through some other papers. I learned so many new things about my father that I never knew while I read that account.

I found it fascinating that he began the story by describing in great detail what the first house he remembers, the one where he spent his earliest formative years, was like.

As I read his accounts, my own memories of listening to my grandparents and my father recall special stories came flooding back. Connections formed by listening to stories from long ago became alive again when I read the words crafted about those times. He wrote because my father didn’t want the memory of those times forgotten. He wrote because he wanted to leave a lasting memory for those who came after him. He left a legacy of stories, memories, and words.

I truly hope to do the same for those who come after me.

More on the writing process:

Early in my writing journey as I began to develop plans for writing memoir, I consulted with a gifted writer Anna LeBaron who wrote “The Polygamist’s Daughter.” She told me just to write, and write, and write some more and not to edit. “Just leave it all on the page,” she said.

Then she told me something else that I have found to be true. She said, “when you need something to help you keep writing, to give you insight, or perseverance, or understanding, you will find that suddenly the very thing you need to keep writing finds it way to you.”

Thankfully, much of what I have needed in this journey is other writer friends. Many of them I have met online and some I have never met in person, but thanks to modern technology with Zoom, and Voxer and other apps, we stay in touch as we seek to keep our writing lives well and functional.

Out of the blue, one of my friends, Jenni Baden Howard who lives in London and writes a newsletter called “Accidents of Time” on Substack wrote a post entitled, “Finding Our Way Home. I was stopped me in my tracks when I read her post because we were so much on the same wave length in our writing lives. You can find and read her lovely post here: Accidents in Time: Finding Our Way Home

We do send message on Voxer several times a week, but I had not told her about finding my father’s writing piece when she wrote her post. Yet, there it was. She was writing memories of her childhood home as I was writing mine and reading about my father’s childhood home. Then she quoted from a book she had recently read called “How to Inhabit Time.”

“I’m drawing a map but inhabiting a history. This looks like cartography but is actually archaeology … this floor plan is a timeline …”

— James K. A. Smith

Jenni, thank you for helping to inform my own work with your beautiful and brilliant writing.

---

When my father wrote his short memoir piece, he actually included a map of the neighborhood where he lived showing the streets, intersections, who lived where and then telling a bit about the people who lived in those houses in his neighborhood. He didn’t draw the floor plan of the house, but by drawing the map of the neighborhood, I can now go over to where that house once stood, or at least nearby the location and see for myself how time and progress has changed the world in which my father grew up.

Most importantly, his memories captured in words and by drawing a map created a time capsule of the day in which he lived his boyhood. His “cartography” acted as a bit of “archaeology” which helps me to form the process for my own archaeological work as I excavate the ground that became the foundation of my life story.

Writing Memoir Provides Connecting Points Between Generations:

My youngest grandson began school this year. He was born in 2017, one hundred and one years after my father, his great-grandfather was born. He lives in the vicinity of the neighborhood where my father grew up. None of it is the same. Horse drawn wagons hauling sand and coal no longer carry loads down dirt streets. The house where my father lived was torn down long ago to build the interstate. But, the park where my father would go for picnics, or to play or to enjoy the landscape and flowers is still there. While it is no longer the beauty it once was, it is frequented by my son and his family just as my grandparents and father once did.

The school where my grandson attends kindergarten is the same one my father attended from kindergarten until grade five. The old school was torn down, but the new one erected in its place has the same name and the same traditions that were in place when my father went there. The church up the street from my son’s home was where my father first attended church.

The arrow points to my father at age eight. The photo is of his third grade class at Bristol school - 1924

What a treasure my father’s words will be to my grandsons as they get older and as they read of how life was in that same neighborhood when my father was a child.

Writing is gift we leave behind to those who come after us.

Writing leaves a map connecting the generations.

That is why I keep doing the work.

---

On Darkness

Darkness.

In the dark I fret of what I fear is to come.

Fear of the unknown?

Fear of not knowing?

Fear of the unknowable?

So many words are written on darkness on this day,

the shortest of all days, that leads to the longest of all nights.

I read them.

Some are so beautifully strung together,

but they unsettle my soul,

filling it with a sense of

dread

for

the coming

long hours of

darkness.

I know darkness.

I don’t want it to:

Engulf me,

Hold me,

Cradle me,

Consume me.

In darkness I cradled my babies in my arms.

I rocked them.

I sang to them.

And to myself,

I sang,

because I too needed to be:

held,

rocked,

soothed.

In the darkness, my baby and I both needed the

soothing presence of

Comfort

to get us through the night.

 I have witnessed, and I have been upended by darkness,

by the darkness of the hearts of others,

and by those who see no way out of the darkness

in the darkest night of the soul.

I do not understand such darkness.

I believe the dark things of this world are to be left with God.

We can trust Him with such things.

“The people who walked in darkness
have seen a great light;
those who dwelt in the land of deep darkness,
on them has light shone.”

— Isaiah 9:2

He did not intend to leave us in darkness,

Not even in the darkness that comes with our darkest nights when our souls long for

Hope

Comfort

Joy.

He will come.

Daybreak comes to us at the appointed time.

Advent.

Adventus.

“The Arrival”

ad- to

venire- come

The promise has already come.

During advent, 

we sense such longing for the promise of His promised arrival

during these darkest of all hours.

The shortest day.

The longest night.

Artic cold is coming.

“Coldest days on record ahead,”

The forecasters say.

What will be my source of heat when I desperately need warmth in my soul?

Where is my source of light when I need true light?

I want no imitations of light that depend on resources created by man.

Seeking light and warmth in the hearts and words of men who offer no true

light

Or

warmth

has left me empty.

The source of light and warmth is

Love.

The Love that abides came down to light the darkness.

Abiding Love that will not leave,

keep my heart full of your light and warmth.

During these days when I see so much darkness,

when I see no warmth in the hearts of so many,

be my

Light.

Abiding Love and Light,

Abide with me.

Suicide Awareness Saves Lives

My daughter, Julie Ann Christiansen, died by suicide at the age of thirty-four on May 29, 2010.

Never, ever, before that day, did I believe that those words, the ones I just wrote would be my truth. Never, ever, before that day, did I believe that this shocking, irreversible event in my daughter’s life would be her final truth.

In truth, all I know about her final decision in life is that she ended her life.

I’ll never unequivocally know why. Even as I spent hours upon hours trying to understand the final act of her life, I could not fathom the darkness and the pain that she must have felt when she sought relief for her tortured mind by releasing it from this life by ending it through death.

Even as I spoke and wrote over and over again for hours on end these words, “I can’t believe she did it,” I could not, and still cannot, understand such darkness.

For that I am grateful.

I’ve never been tortured by such darkness and despair as she was.

She was.

Tortured.

She was.

Desperate.

She,

for reasons, I will never know,

did not reach out to those who could have,

would have,

and had before,

helped her in her final hours

when despair

robbed

her from

seeking hope,

seeking help.

Perhaps, her state of mind created a recklessness in her that was not a part of her personality in her more stable moments. Recklessness was what she showed when she was caught in the web of her mental illness; it was not what she portrayed when she was well.

And yet, there was a measured mindset that seemed to in place when she took the final steps of ending her life. The evidence she left behind indicated that, but evidence left behind did not prove she meant to end her life. Evidence only indicated she had the things available to bring an end of things. Did she want to quiet the demons inside? Did she want some quietness for her ‘unquiet mind?’ Did things get out of hand? Did she willingly give herself over to darkness?

These are the questions that overwhelmed me for years. These are the questions that remain to this day. These are the questions for which I will never have answers.

I only know that darkness overtook her and took her life; a life that was bright, so full of light, so shining, so beautiful.

Light was a gift she brought to life:

light that lit up every room she entered;

light full of brilliant thoughts and beautiful writing;

light that had all the fun dance moves;

light full of freedom of expression that made her dancing a delight to behold;

light full of such caring love;

light full of laughter and so much fun;

light full of kindness, compassion, empathy, and understanding;

light that inexplicably snuffed itself out under the cover of darkness during the last dark night of her soul.

A light like hers, extinguished by her own hand, never to give off life and light to others again,surely must only be vanquished by an enemy that those of us who only saw her light will never know, or understand. The unknown nature of such darkness makes our understanding of suicide all the more opaque for the those of us who have never been held hostage to its grip.

Because of her genetic makeup, my daughter suffered from a disease that first began to manifest itself in her late teen years. Depression, when it hit, began to rob her of her joy and became the demon that she would battle in many different ways for the rest of her life.

Julie, the reader, the seeker of answers and understanding, did wish to understand her illness. In her very young adulthood, she asked me to read Kay Redfield Jamison’s An Unquiet Mind because she said it helped her to understand her illness.

Not long before her death, she also recommended that I read Nothing Was The Same, Jamison’s book about her own experience with grief after the death of her husband.

In this book, Jamison said that during grief she experienced restlessness in everything she did. Jamison states that “in grief the restlessness was not the unbearable agitation of mania, but instead, an anxious fluttering that attached itself to my grief...I walked and walked in an attempt to alloy that disquiet.”

I often think that in those hard last months, or the last year of my daughter’s life, she did not find a way to “alloy that disquiet.” The disquiet in her mind was not shared with others. Did she push her deepening depression deep down inside as she portrayed a strong, resolute exterior. If there were crack in the exterior, she would call and cry, expressing frustration, sadness, confusion, loneliness, anger. I would try to help, but she never let me see what was really going on inside during those last months. Her cries for help seemed to be situational in nature. I did not sense that she was suicidal. I’d seen her in the grips of suicide ideation before. In her last months, I did not see this. Did she want to protect me from knowing what she was really going through?

I only know this: the ones full of light don’t make us aware of the darkness hovering in the shadows of their minds. They so often bear the burden of it alone, silently, and perhaps, not understanding the depth of it themselves.

These words from Jamison gave me such comfort and understanding after my daughter took her life:

“Grief conspires to ensure that it will in time wear itself out. Unlike depression, it acts to preserve the self. Depression is malignant, indiscriminately destructive.”

“Time alone during grief proved restorative. Time alone during depression is dangerous.”

“Depression, less comprehensible than grief, does not always elicit the same ritual kindness. Grief does not alienate the way depression does.”

— Kay Redfield Jamison in “Nothing Was The Same"

I’ve known deep grief. Grief does “act to preserve the self.” I’ve come to believe it is that alienation aspect of depression that makes it indifferent or even hostile towards the preservation of life. I am not a mental health professional, but I have sought to understand the pain that must have become so powerful in my daughter’s life that her only thought was to find peace and safety in that which did not preserve her life but rather ended it.

She needed safety in that moment of crushing pain. She needed a life line. She needed a safe place with safe people who could help her through this time when darkness was overtaking her.

Suicide Awareness Saves Lives

Dear readers, there are places where help is available when a life is at risk

The most important place to find help is found by dialing: 988.

Those numbers, when called or texted, will connect you with safe people who can help you or your loved one find safety when the darkest hours threaten to overtake.

Memorize these numbers: 988.

Call them.

Please call them if you or a loved one is at risk.

Here are five action steps you can take if a loved one is at risk of suicide:

• ASK - Are you thinking about suicide?

• BE THERE - Connections save lives. Make sure you follow through in getting them help in ways they may not be able to do for themselves.

• KEEP THEM SAFE - Establish immediate safety. Do they have a plan? Do they have access to items they could use to attempt suicide?

• HELP THEM CONNECT - Again, connections save lives. 988 Lifeline is an invaluable tool for ongoing support. Also help them establish a safety plan or get help for them.

• FOLLOW UP - Keep showing them you are there for support by texting, calling, visiting.

In loving memory of Julie Christiansen

This post to raise suicide awareness and prevention is dedicated to the memory of my daughter and all who lost their lives too soon. Call 988 for help and hope.

Pacing and Patience - Secrets from Nature

Imagine feeling the following sensations periodically on a daily basis:

dizziness,

floating,

spinning,

whirling

light headedness,

nausea.

Add to that:

confusion

and

a sense of being out of sync with life, your environment, and those around you.

This all makes you feel

isolated

and

not understood.

Add to all of these symptoms, pain and headaches.

Along with the headaches,

add

visual disturbances,

tinnitus,

fullness in the ears.

Along with the above symptoms and sensations,

add:

fatigue

that does not go away even as you sleep much of the day away,

loss of the ability to

concentrate,

the loss of

short term memory,

and the inability to problem solve.

Imagine:

not being able to drive,

socialize,

frequent public places,

or

go grocery shopping

because you are overwhelmed by the sights and sounds surrounding you.

Add crippling anxiety to all of the above.

Intensify the debilitating effect of all of the above with the process of dealing with

grief over the recent death of a child.

Imagine that it is the dead of winter when the landscape seems bleak and bare.

When nothing seems to be blooming in life, not even hope,

by my own nature, I am very far from the message that Ralph Waldo Emerson gives about the pace of nature. I want things blooming again. NOW.

The preceding words were written in August of 2012, and shared with readers of a blog I wrote at the time called, “Retired English Teacher.” The words described how I felt through much of the first months of 2012, after a head injury I suffered from falling down the stairs in my home on the second day of 2012. Previous to the fall, I was already suffering from very troubling symptoms of a condition that remained undiagnosed. This head injury exacerbated those symptoms sent me on a new journey of learning much about

healing,

hope,

pacing, and

patience.

I remember that one of the first pieces of advice given me after my injury by my chiropractor was,

"Be patient with yourself."

I am not a patient person.

I needed a very special person in my life to teach me patience. I also needed one who had the education and skills to properly diagnose my problems and give me the therapy I needed to heal.

Thankfully, I found that person in a very gifted physical therapist who a board certified neurological clinical specialist who specializes in all those symptoms that were robbing me of the life I once had. To say that she was a God send to my life is an understatement. I honestly do not know how I would have survived without the skill set that she used to diagnose my problems and to design a treatment plan that would give me both hope and healing.

The diagnosis I received ten years ago was “visual vestibular disorder.

Since that time, I have suffered from the effects of this disorder at various times. Each time, I practice the exercises I had given, and watched my diet, and made sure I got good rest, and the symptoms went away without causing much distress.

That is until, late winter and early spring of 2021.

2020 was not a good year for any of us. It was particularly stressful for me, so when February of 2021 rolled around, it seemed like getting away to St. George, Utah, would be the best way to celebrate that 2020 was over while simultaneously celebrating my birthday with my two oldest children.

The trip, the celebration, being with family again, and seeing all the beautiful sights of the area were just what I needed after the stressful year of 2020. I was not expecting that all the changes in altitude and weather combined with an extreme reaction to seasonal allergies would send me into a tail spin of vertigo that would not abate.

After seeing doctors for weeks upon weeks, I was finally diagnosed with vestibular migraine by a ear, nose, and throat specialist.

I again consulted by phone with the therapist who had helped me so much in 2012. She agreed that the diagnosis was correct, and said that much had been learned about this condition since I had last seen her. Thankfully, the treatment plan she prescribed by phone, and the one my primary care doctor set in place helped me heal again.

Cronic conditions such as vestibular migraines do have a way of disrupting life again and again. in my case, they usually present when I least expect them to appear again.

In October of 2022, just about two months ago, I again visited the ENT who first diagnosed my vestibular migraine disorder. I had a sinus infection and earache that caused terrible ringing in my ears, fullness, and pain. I was severely fatigued and suffering from brain fog that would not lift.

I thought I was losing my mind from all the various symptoms I was suffering. I thought perhaps I needed an antibiotic for the sinus infection that I imagined was raging, and I worried that I might have developed Meniere’s disease. I was confused because I did not have vertigo, which I normally have during vestibular migraines. I was surprised when a hearing test ruled out Meniere’s and diagnosed vestibular migraine yet again. My symptoms were presenting differently, and so I did not recognize that it was a reoccurrence of a familiar condition.

Knowing we would be traveling, I worried that I my symptoms would only become worse. I bought a new book that was recommended to me called, “The Dizzy Cook” by Alicia Wolf. Her advice on travel and diet is priceless. I began the vitamin routine that my doctor recommended. I then took off for a two week vacation.

The vacation, one that we took to North Carolina was great, but the symptoms from the migraine kept me from enjoying it fully. I believe I controlled the symptoms the best I could, but in truth, my brain and body were severely out of balance, so I was so grateful to get an appointment with my gifted physical therapist. I was in her office two days after my return from vacation. It had been ten years since my symptoms were so bad that I had to visit her in her office.

Now, nearly a month later, after the various protocols given to me by my therapist, I am beginning to go through most days with few symptoms. I’m so grateful.

The most important practice I have put into place is this:

“Adopt the pace of nature: her secret is patience. ”

— Ralph Waldo Emerson

Yes, I know I started this post with the quote. I’m ending it with the same quote because this lesson is one I am still learning over and over.

In the past few weeks, I’ve also learned some new applications for that lesson. I hope to share some these applications as we all go through the busy holiday season. For now, though, I’m sending this post out for all who need a message of support that encourages patience.

What is testing you patience during this holiday season?

How are you learning to pace yourself?

I’m truly interested in knowing about your response to the questions above.

If you are suffering from chronic conditions that strike when you need them to leave you alone, how do you strategize to get better by pacing yourself when you have other demands?

I hope my post helps you feel less alone if you are struggling with any health complication during the holidays.

This week, the second week of Advent, is the week of peace. May peace find you as you pace yourself by welcoming that secret ingredient from nature into your life: patience.

Connections - Remembering Old Ones & Making New Ones

Campfire smoke still lingered in the fibers of my jacket as I loaded it into the washing machine. The memories made this past weekend as some of the family and I gathered around an old wood and coal cookstove will linger longer. It’s been such a long time since I sat around a campfire, or in this case, an old cookstove fire, that I savored every impression that hit my mind as we first gathered at my son-in-law’s family cabin, or as daughter and her husband have described to me: “our happy place.”

I liked that we didn’t have a campfire because sitting around an old stove felt more like the times I remember from childhood when each spring we would first open up the old house in the mountains that my grandparents owned. In early spring days, the air was so frigid after the house had been closed up all winter that my grandfather and father would immediately start both the old iron cookstove in the kitchen and the old potbelly stove in the living area so they could begin to thaw things out. We kids would huddle around the stoves trying to get warm as my grandmother, mother, and aunts would go about sweeping the floors and removing a winter’s layer of dust from all of the furniture.

As we sat by the fire this past weekend, I began to reminisces of other times a wood burning stove figured largely in my life. I began to make so many connections to the young girl who once lived in such a different era, the era right after World War II, and was comforted by knowing that that same young girl is well known by this woman now in the eighth decade of life. She and I have changed; the young girl that I was has aged and matured, but she and I also remain the same in matters of who I am at my core.

As I reminisced, I recounted how when I was a child, up until I went to school, my mother still cooked on an old stove that required coal or wood. She often opened up the fire box to heat up the kitchen. I remember the sizzle and steam that would come off of my snow covered winter mittens after I placed them over the warming oven to dry out after playing in the snow. I remembered her cleaning out the ashes from the stove, and somewhere, very deep in my memory, I also have a slight memory of the ash box located on the side of my childhood home that had to be emptied. I don’t remember the furnace, don’t know where it was, but I do remember the dirty task my mother had of emptying those ashes from the ash box outside.

“Why do these connections to memory matter?” I ask myself, as I sat with my husband, my daughter, her husband, my granddaughter and her boyfriend in the autumn air of 2022. Those times and and the people that lived them with me long ago, the ones from the generation before mine, are now all gone. “Are my memories, my connections I keep making, even relevant anymore?” Relevance of old memories seemed to apply to me only, so I decided to listen more than talk. (I know! That is a rarity for me!)

I decided to be in the moment as I joined the others for a rare weekend together. “Savor the time,” I remind myself. “You don’t get that much time with family these days.”

When my daughter invited us to join them for the weekend, she said, “We live outside on the deck next to the stove when we are there. We cook outside, and we just sit and enjoy the time. We don’t even cook or eat inside if we don’t have too.” That sounded like the very best way to close out September to me. Soon, too soon, we’d be stuck inside all day wishing we could could be outside enjoying the last days of summer and the early days of autumn.

The day turned to evening as I listened to all the sounds that bring me joy: voices of my loved ones sharing stories, making puns, laughing. The background music of a real stream made the time all the more special as we sat bundled up in layers of clothing or old quilts. During such times, I loath to go inside. I want to breathe in the fresh mountain air, tinged a bit with smoke, but not enough smoke to make me sneeze or cough, as long as I can.

Dark skies, silhouetted trees, stars, and cool breezes awakened in me more memories of those other days spent in the mountains that began when I was a very small child and have continued throughout my life. As summer draws to a close, I often lament loudly to all who will listen that I’ve not been in the hills enough in recent years.

I’m most alive and most in touch with who I am in the thin mountain air of Colorado. I drink in all that being in the moment teaches me as I sat on that deck relishing all that early fall offers the heart willing to harvest beauty to hold on to as fall turns to the dark days of winter.

The air whispers a new awareness as I sit quietly taking in all my senses. Suddenly I understand as I never have before that connections don’t just form in the mind. Visceral connections are made in the body. They remain there. The mind and the body are all connected in ways I’m just learning in recent years.

There is a body awareness that I have out of doors, especially in the mountains, that brings back exactly how the air felt when an event happened decades ago. The light, the air, the interplay of the wind with the aspen leaves takes me back to that time as a young girl about to launch into adulthood when I lived in Leadville, Colorado.

I am connecting with her again, that young girl who felt so alive and present to all that life had to offer. Soon, I’m remembering the sounds that were present as I sat next to a stream with my girlhood friend when we decide to start our tans early by stripping to our panties and bras so we could sunbathe on a huge rock in the middle of the stream. Mary, my high school nemesis/best friend who went off to college with me, has been dead now for twelve years, but I see her red curls, her mischievous blue eyes, and I hear all her Maryisms in my mind. Our connection still lives in the mountains, and there we are still vibrantly young and healthy and able to conquer the mountains passes we climbed together, both on foot and in that old blue Ford coup from the early 50’s that she drove.

Oh those days! The mountains were not so populated then. Vail Ski Resort did not exist, but the mountain did, and my friends I drove to the top of it in an old jeep and marveled at the views, unobstructed then by what was to come with development. None of the big attractions that bring so many to the Colorado mountains no matter the season existed in the early sixties. The hills were ours to roam freely, and all of us teens who lived high in those clouds did so with great abandon and adventure. “That too is part of who I am,” I think.

The silhouetted trees, the sound of the stream, the pipe smoke coming from my son-in-law, and the smell of burning wood from the stove take me right back to sitting around a campfire listening to the stories of my dad, my aunts and uncles, all masterful storytellers, especially my dad, as they shared wisdom, laughter, and wit. So much wit. Our sides would ache from laughter as loud boisterous jokes and stories filled the air as we sat by the campfire. I learned so much history, family history, Colorado history, U.S. history, railroad history. If only I could remember it all. I listened as they, my dad and his siblings, shared all the great books they were reading. This was and is my legacy. I grew up in a world rich in literacy, story telling. Vocabulary was used in ways that enriched my mind and turned me into a lover of all who are well versed in word smithing both in the oral tradition in the written.

In those days of long ago, I remember not wanting to fall asleep. I wanted the keep listening to the stories, but soon we were sent off to bed. We’d snuggle down into old feather filled army sleeping bags, strongly smelling of the last camping trip campfire, that had been placed atop oily smelling tarps meant to keep the ground air from freezing our bones. Those tarps also kept us dry when the dew formed in the morning. If we were lucky, we, my cousins, siblings and I, would also have a few old army-green, itchy wool blankets to spread on top of our bags for additional warmth. The stars were our entertainment for the night. We would try to find the star constellations our grandmother taught us, or we looked for shooting stars. Sometimes, we told ghost stories. No wonder I fell asleep shaking, and not just from the cold.

Now, I’m grateful to have a house to enter in this stage of life when I was invited to go “camping” at the cabin owned by family members of daughter’s husband. And, it goes without saying that I was grateful for a bed, piled high with quilts to sleep in as I cuddled as close as I could get to the warmth-giving body of my husband.

The bathroom with running water and a flush toilet was a definite bonus. My son-in-law did point out to me the outhouse up the hill from the main house, “just in case.” “It is a two-holer,” he says. And it is called The Sweet Pea. (I saw lots of wild sweet peas growing on the property, so I assumed that inspired the name. 😊

It’s not just the mountain air that whispers all these memories to me as I sit with my loved ones in a tight circle of love, it is the location. While I’d never been to this particular spot, this family cabin that belongs to a family I am now connected to, I have spent so many precious times in the part of my beloved state, Estes Park, Colorado. That is a destination I always like to have on my plans for a getaway.

My father once told me that it was in Estes Park when he was on a “young people’s retreat” with others from the church where he grew up that he first decided my mother was the one for him. He knew her. They went to church together. They “ran” in a group, but it was on a horseback excursion that he fell for her. (As far as I know, that was the only falling that happened that day. In fact, I never heard of my parents riding horses except for that one time!)

I also have an old photo of my mother on a cabin trip to Estes Park with her girlfriends when she was a young woman.

my family has gone here for fun for decades!

My mom, the one on sitting on the garbage can, cabin camped here with friends back in the 1930s.

Estes Park was only about fifty miles from where I went to college in Northern Colorado, so it was the perfect place for retreats with college groups, geology field trips, and weekend drives with a boyfriend, or with the girlfriends.

Later, now forty years ago, I dated a man for quite a few years whose parents owned a cabin in the area. In fact, that was the place he invited me to for our second date! Yes, I went, and I brought my fifteen year old daughter with me as a proper chaperone. I was just entering the world of dating as single mom after a bitter divorce that turned our lives upside down. I was not ready for entering that world of dating yet, but I was flattered to be asked out a second time, so I made sure I had all the boundaries in place before we left for his family cabin.

All those years ago, so many happy trips were made to Estes Park with friends, and with the family of that young man I dated. I remember the times as I walk past the gift shops and restaurants. I ask my son-in-law if that old pizza place is still in town. I remember the place that had those delicious old-fashioned chocolate sodas. It seems to have disappeared into a world that no longer knows about chocolate sodas that we once bought at the soda fountains of the past.

Estes Park remains a special retreat destination. I attended my first retreat there in college with Campus Crusade. My last retreat in this place was in 2018 when I attended a church retreat.

My hubby and I have spent our own weekend getaways here. The last one, our anniversary in 2020, ended when I had a diverticulitis attack that sent me to urgent care and then home in the middle of the night so I could go to my local hospital. With the good, sometimes the bad comes along.

This past weekend on Saturday night we celebrated the time with a birthday cake, which we joked about since it was no one’s birthday, but it was the only cake left at Safeway when my hubby went in to buy us dessert for the evening. We laughed and sang “happy birthday,” perhaps as a nod to all the birthdays and other family times we missed during the time of COVID lockdown and beyond.

My beautiful granddaughter and hostess extraordinaire

It finally got too cold to stay outside so we went inside to play a game my granddaughter, always the best hostess, had bought especially for us all to play during the weekend. It was a cross generational game called Ok Boomer, a trivia game. The old folks won. Who knew that the younger ones had no idea what pedal pushers are? Do you know what they are? I don’t remember a time I heard my husband laugh so hard. Usually, he doesn’t play our boisterous family games because we are a bit too much for him, but this time he didn’t want to disappoint Hannah by not playing. Afterwards he said, “I’m glad you all are glad I wasn’t a party pooper.” He was the party! Who can match his wit and puns when he get going?

Making new connections and new memories create the very best of times. I think this weekend might just top the list of my favorites of all times that I have spent in Estes Park. My daughter and I talked about what a great time we had just all being together. Unlike going out to dinner, or holiday gatherings, everything was unplanned, spontaneous. Unlike so many holiday gatherings, there were no expectations with this impromptu opportunity to be together. We just enjoyed the time and the fellowship. We were just family being family together.

Connections span the generations in our memories. Remembering those memories while making new ones enrich a life beyond measure.

I’m so very grateful for all these life giving and life affirming connections that have enriched my life and filled it with so much beauty, joy, and happiness.

Suicide Awareness and Prevention

September is Suicide Awareness Day

Today, September 10, 2022, is World Suicide Prevention Day.

As I sit down to write about the significance of this month and this day to me personally, I am astounded to think that suicide has had a presence in my life for nearly thirty years.

The possibility of a suicide of one close to me occurred for the first time when my youngest daughter was 18. If she were still alive, she would now be 46.

Julie with her boyfriend Scott at a high school dance when they both were about 18.

A close friend of my daughter’s alerted by calling me to tell me that she thought Julie may have taken an overdose of Tylenol in an attempt to end her life. I knew she was depressed, and I worried that she might be suicidal. Then it hit me. My current situation on that spring day in 1994 was no longer hypothetical. There was no “If” about it. My daughter was suicidal. Actually, she was not just suicidal, she had just attempted suicide.

As I entered her room, I noted it appeared she had indeed just taken a large portion of a bottle of Tylenol.  I didn’t know how many pills she had taken, nor did I know when she took them.  Grateful that she had responded to my request to get out of bed and come outside to sit with me on the steps so we could talk, I took a deep breath, prayed a silent prayer for help, and placed my hand on her knee that was a few steps above where I was sitting. 

“Julie,” I said, “I know you have been so sad lately.  I know you have been having problems with your relationships.  I know that you are at a time in life when high school is coming to an end at the same time you have to determine what you will do next in life.  All of this is a lot to handle, especially when you are sad.” 

She looked stoically ahead, not giving me any kind of a glimpse into what she was feeling, or if she even was hearing or processing my words.  I noticed tears forming in her eyes, but they did not fall to her cheeks.  I took her hand; it was cold and stiff and not responsive to my touch, but I enfolded her hand in mine anyway.

“Jules, you’ve taken some pills that could really do some damage to you.  Will you tell me more about this?  Will you tell me how many you took?  You don’t have to tell me why you did this right now, I’d just like to get you some medical help.  I’d like to take you to the hospital.”

For the next sixteen years somehow my family and I, mostly her next oldest sister and I, were able to keep the darkness that would often encamp itself within her soul at bay.

Then, on May 29, 2010, my beloved daughter Julie lost her battle with depression and died by suicide at the age of 34.

Prior to losing Julie to suicide, I would never have thought about arming myself with information regarding suicide prevention. I should have. Julie had threatened and attempted suicide more than once over the years. I thought I knew what I needed to know about talking to her when I recognized that she was in crisis. I thought I recognized signs.

Now, I wonder how I could have been so sadly misinformed.

I find it stunning now that even after her previous attempts, I never sat down with her and went over the risk factors and discussed how some of the behavior I would see in her could indicate that she was highly at risk for attempting suicide again.

I never discussed a plan that could help her, me, or the rest of her family and friends during a time when she might be in crisis.

We didn't have a plan in place.

I don't think we would have had the tools to develop such a plan.

I assumed Julie would always call me, or she would call her sister Amy if she were in crisis.

I assumed we would get her help right away.

I had never even heard the term "completed suicide" before Julie took her life.

That term alone would have terrified me. That would have meant that any attempt had the potential to be

final,

permanent.

That would have meant that my worst fear could have actually happened.

I thought I could deal with her attempts and threats.

I thought I would always have a way to reach her.I never thought she wouldn't give me the opportunity to reach her.

I never believed that my worst fear would actually happen.

My purpose for writing this has to been to increase awareness about preventing suicide. There is hope. There is help. Together, by informing ourselves, and by being observant and proactive, I believe we can can make a difference in lives of those suffering from mental illness or struggling with suicide ideation.

You can be the difference in getting help for someone in need. Your action can create hope for one who is demonstrating that he or she is at risk for suicide.

Do you know the warning signs? Here are some to watch for:

• Talking about wanting to die or to kill themselves

• Looking for a way to kill themselves, like searching online or buying a gun

• Talking about feeling hopeless or having no reason to live

• Talking about feeling trapped or in unbearable pain

• Talking about being a burden to others

• Increasing the use of alcohol or drugs

• Acting anxious or agitated; behaving recklessly

• Sleeping too little or too much

• Withdrawing or isolating themselves

• Showing rage or talking about seeking revenge

• Extreme mood swings

Do you know where to find help? This website is a valuable resource: https://988lifeline.org/help-someone-else/

If you think a loved one is a risk, take action. Call 988 for help, or encourage your loved one to call.

Remember these five action steps:

• ASK - Are you thinking about suicide?

• BE THERE - Connections save lives. Make sure you follow through in getting them help in ways they may not be able to do for themselves.

• KEEP THEM SAFE - Establish immediate safety. Do they have a plan? Do they have access to items they could use to attempt suicide?

• HELP THEM CONNECT - Again, connections save lives. 988 Lifeline is an invaluable tool for ongoing support. Also help them establish a safety plan or get help for them.

• FOLLOW UP - Keep showing them you are there for support by texting, calling, visiting.

I will always believe Julie did not wish to lose her battle with an illness that had caused her so much pain in her life and had robbed her of so much. She fought valiantly for many years. She was brave and courageous, but in the end, her illness won. I will never know the last details of her life or how she might have or might not have reached out for help. I only know that she would support every word I have written in this post. She would be the support for any of us. Of that I am one-hundred percent certain.

Now, those of us left must do what we can do to support others with mental illness and who struggle with thoughts of suicide.

Again, be the one who creates hope through action.

Do this to honor Julie.

Julie in her element - out doing hard things like hiking.

My Alopecia Story

The completely innocuous beginning of my journey into hair loss cannot be pinpointed. There were early signposts. Inoffensive and unobjectionable, they were not noted. One day, I did notice I no longer had hair on my arms. It certainly didn’t seem like a big deal. Then, I noticed I didn’t have hair on my legs. I surmised the loss of hair on my limbs was a natural part of aging.

Next, as I innocently proceeded on a journey I didn’t know I was on, I noticed that I had a small red inflamed spot on the left side of my front hair line. It didn’t itch. It just looked odd. The spot spread, and it looked as if pustules were forming. I tried several home remedies for treating the area. Then, I noticed that hair would fall out when these strange looking spots healed.

On April 6, 2006, I consulted a dermatologist. I somewhat sheepishly told him about the home remedy I had been using: Listerine. Seriously, I applied Listerine to these inflamed areas of my scalp! I did this because I had concluded that putting an antiseptic on the weird looking sores would be better than doing nothing at all. I think the doctor thought I was a nut job. I can forgive him for that. I’m sure he hadn’t seen anyone else that day using Listerine to treat skin problems. He asked me if I had tried Windex. Funny.

The doctor said he didn’t know what the problem on my scalp was because he’d never seen it before. He thought it might be psoriasis. I have a history of psoriasis. I didn’t think it presented like psoriasis. He didn’t disagree with me. He concluded that he didn’t know what else those sores could be. He gave me a prescription for a topical and sent me on my way. He never suggested that I schedule a follow-up to see if my problem was resolved by using the treatment he prescribed. I felt dismissed but also felt that my symptoms did not merit a legitimate medical concern.

The topical cleared up the worst of the inflammation. This made me happy. I did notice the hair continued to fall out when the area was healed, and that it did not regrow where the pustules had been. My hair continued to thin. I fretted, but again I surmised it was a part of the aging process. I noticed the front part of my hairline did not have the volume that it once had, and I found my old hairstyle no longer worked with the thinner frontal hair.

My biohair over the years is shown here in photos that span from 2004 - 2010. The bottom right photo was taken in 2006 when I first consulted a doctor. The top right photo was taken in 2009.

In May of 2010, my youngest daughter died unexpectedly. Just months after her death, my hair fell out enough that fine strands of silver hair covered my clothing. I called it tinsel and joked, “The tinsel is falling off the old tree.” According to my doctors, the loss was temporary and caused by shock and stress. “Your hair will come back,” they said. The hair loss was significant, but not noticeable to others.

One morning in July of 2011, as I was putting on my makeup, I noticed my eyebrows were completely gone. They’d been there the day before. Now, the loss of hair I had been experiencing for the last five years seemed anything but innocuous. I saw my doctor and told her about continued thinning of hair and sudden loss of eyebrows. She asked, “Have you been plucking them?” It was a legitimate question. Perhaps, she thought my stress had manifested itself with trichotillomania, a hair-pulling disorder. I decided it was time to visit a new dermatologist.

A compassionate and supportive doctor, she was also a friend. She thought I had a form of alopecia triggered by stress. She’d never seen alopecia that presented like the symptoms she saw on my scalp. The sudden loss of eyebrows was a mystery to her. She thought we should take a wait and see approach. I went home from the appointment and consulted Dr. Google. Alopecia, a word I couldn’t even pronounce, was not new to me. I’d heard it before, but it was a word I could never remember. I wrote this term down on a yellow sticky note and placed it by my computer. I practiced saying it. I didn’t want to forget the name of the condition nor how to pronounce it. Believe me, since that day, there has been no forgetting!

Not long after that appointment, I saw my endocrinologist for a routine appointment and asked her for an opinion. She said that my thyroid was not causing my hair loss but concurred that stress could have triggered problem. She advised me to get the scalp biopsied. Heaven only knows why it took me a year to get a scalp biopsy. I was in denial about my hair loss. I believed it was temporary. I believed the loss would stop. I believed my hair would grow back.

Meanwhile, my hair continued to fall out. Finally, in March of 2013, a full seven years after my first visit to a dermatologist for hair loss, I saw another dermatologist. After his initial examination of my scalp, he diagnosed me with frontal fibrosing alopecia. He added that he would have to biopsy my scalp for a solid diagnosis. I had never heard of FFA before. The biopsy came back confirming FFA and lichen planopilaris.

My bio-hair in 2013 - the year I was diagnosed with frontal fibrosing alopecia, a scarring alopecia.

He sat me down and painted a grim future for me and my hair. He showed me pictures he had downloaded from the internet. All I could think of was, “Surely this won’t happen to me.” The new doctor said that there was really no treatment to cure the condition. He said that the treatments that might slow it down were not effective and had side effects I may not wish to experience. I chose not to take the oral medications but used the topical Clobetasol prescribed to help with the itching, pain, and soreness.

In 2013 when I was finally diagnosed with FFA, I realized that I had suffered from terrible itching on my scalp for several years. Dealing with loss and grief, health problems of another nature, I did not pay much attention to what was going on with my scalp. I had lamented my thinning hair, but I still believed it was a temporary situation. The trajectory of my journey changed the day I learned about the disease that was not only taking my hair, but also leaving scars behind. I had to determine out a way to accept and cope with the diagnosis and the changes it brought to my journey through life.

The devastating emotional and psychological components of hair loss are not often addressed by the medical profession. My own personal journey with hair loss has been made easier by the support and knowledge I have gained from the Scarring Alopecia Organization.

In June of 2016, I attended the 7th International Patient-Doctor Conference sponsored by SAF in New Orleans, Louisiana. It was probably one of the most important things I have done for myself since I began this journey. There, I learned I was not alone. I met some of the most amazing, supportive, and smart men and women I have ever known. Like me, they too are learning to live with scarring alopecia. At the conference, we armed ourselves with information to help fight the battle against hair loss. We learned from those doctors whom have dedicated themselves in helping us on this journey.

My hair loss in July 2016, one month after I attended my first SAF Conference.

United, we are joining the battle to win the war on scarring alopecia. Our stories give strength to each other as we journey down this road together. Our stories unite us and make us feel less alone. Our stories validate our experience. At times I think we all feel very alone in a world where it seems every head around us is covered with hair. I hope my story helps someone else feel less alone.

Happy Birthday Colorado

Colorado

I am a Colorado Girl.

I was raised at the foot of the beautiful Pikes Peak.

I like to think it was the first thing I saw as I left the hospital after I was born.

On my 75th Birthday, a photo was snapped of me and my dog with my beloved pikes peak in the background

Mountains, I loved them all of my life.

On this day in 1876, Colorado became a State. She is known as the Centennial State because Colorado officially joined the Union one hundred years after the founding of the United States.

I’m rare Coloradan because members of my family have been living in this beautiful State for generations. I am also a proud third generation citizen of El Paso County, the county in which my hometown, the place of my birth, Colorado Springs, is located.

Since my birth, I’ve lived in several places in Colorado, and I love each place in which I have lived, but if you were to ask which place had the greatest impact on me during my formative years, I would have have to say it would be Leadville, Colorado, the place where I came of age, the place I spent the last days of my youth, and the place where I graduated from high school.

Memories of A Colorado Mountain Girl from
Leadville

The Setting for My Youth

Leadville, at two miles high, is the highest incorporated city in the United States. The average snowfall in Leadville is 127 inches a year. It also averages 310 days of sunshine a year. It is a beautiful place to live. It also is a challenging place to live because of the altitude and the snow.

That Means I am a true mountain girl.

 Anyone who has lived two miles high deserves that distinction.  

I loved everything about living in this old mining town in the heart of the Colorado mountains.  

Living in Leadville, Colorado is an "On Top of the World Experience."

When I was just beginning my senior year in high school, my father was given a promotion when he became agent for the Denver & Rio Grande Railroad in Leadville. This meant he moved our family from the flatlands of Pueblo, Colorado, to the rarified air of Leadville, Colorado. I was heartbroken when I had to make this move at this time of my life. Little did I know how much Leadville would figure with such prominence when I recall the happiest times of my life.

Recently, I came across an old journal where, inspired by artwork in the journal, I remembered and recorded some memories of my time in Leadville.

Journal entry of a memory of Leadville

This picture brings back memories of Leadville and the many pines out on the road toward Turquoise Lake. It must have been February and we were decorating for a school dance - "Winter Wonderland." We went out collecting pine branches & tumble weeds - the tumble weeds to be sprayed white and decorated with tiny lights. We must have gone after school - it was cold! The world was white and glittery, the sky was black, clear, and starry as only a Leadville night can be. I still remember crunchy footsteps in the snow and dragging branches and tumble weeds along the snow. It was perfectly quiet except for this sound and the laughter from the excitement of being young and gathering natural decorations for a dance.

I remember: the cold, my feet felt like they were frozen to the ground, the peaceful beauty that surrounded us, and the freedom of youth. Also, I remember the power and the faith that I felt at that age.

Nothing is more beautiful than a Colorado blue spruce being covered with soft, thumb nail size snow flakes in a light snow storm in early evening.

February, 1963, I turned 18. I wanted to stay there forever. The future seemed bright. The past was happy. I had nothing to regret or sorrow about. The present was perfect. I was living in a small mountain town. In fact, I was new in town, and everyone had been so friendly. I was popular and had many friends who were fun and intelligent.

The entire town was ours to roam. It had a colorful past, and it fascinated me. There were old houses that were from the silver boom days. Some of the sidewalks were still wooden. The hardware shop, the barbershop, the church, the school were all functioning museums. Up on the hills were abandoned mines. At night we would go up there and tell ghost stories about them. They were pretty scary too.

The scenery was out of this world..

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I was the lucky one who lived in this place in the early 1960’s. It had not been discovered yet, and was in many ways a sleepy mining town that as teens we roamed at will. I’ve made a short list of some of my memories of that time.

Some More Memories of Leadville

• Being the new girl in town.

• Hiking over Mosquito Pass right after I moved to town with my dear friend Mary Carson who passed away in 2010. (Mary deserves an entire blog post.)

• Remembering when Mary first met me she said: "My dad once had a mule named Sal."

• Being crowned homecoming queen of Leadville High School.

• Mary was my competition. She was also the yearbook editor. She made sure the photo of me being crowned as queen showed her and the viewer could not see my face. 😂

• We later became the dearest of friends and went to college together.

• Jeep rides with friends all over those surrounding mountains.

• Making the best friends ever.

• Listening to "true" ghost stories at night while we sat in cars parked at the foot abandoned mines.

• Listening to "true" ghost stories in the cemetery.

• Driving to the top of Vail Mountain before Vail was a ski mountain and a resort.

• Our senior trip to Denver to see "How The West Was Won."

• Senior skip day to Glenwood Springs that was nearly canceled because we had tied beer bottles on the bottom of the bus.

• The bus full of Seniors coming home from Glenwood Spring broke down on our trip over Battle Mountain. We got out and walked for a while, and then we were all loaded onto a single bus to head home.

• Walking through knee deep snow in my Bermuda shorts on my way to my father's office in the depot behind our house so I could type my senior paper.

• Listening to Pete Seeger sing This Land is Your Land and Where have All The Flowers Gone? and thinking folk music spoke my language.

• Reading Dr. Zhivago in my English class and falling in love with Russian literature.

• Starring in several school plays, and having a supportive role in others.

• Building scenery for those plays.

• Taking my ACT test on the coldest day ever and having to walk from the high school to the barbershop to me my father so he could take me home. It felt like my feet were walking on ice even though I had on thick boots and and thick socks!

• Graduating with 67 others in my class.

• Being awarded a scholarship to Colorado State College. (Now The University of Northern Colorado.)

• Reading War and Peace for the first time right after high school graduation.

• Working as a carhop at the local A&W which was across the street from my house. (I kept my tip money in a heart shaped box I’d received full of candy on Valentine’s Day.)

• Hearing Barry Sadler sing The Green Beret for the first time while we were playing pool at a beer joint. Barry Sadler was a Leadville boy.

• There are so many memories, but mostly I remember the beauty of this place. Who wouldn't want to live there? This photo was taken where our house used to stand a few years back. My youngest sister and I are standing in front of what was the view from our living room window.

Suzanne and Sally standing where our home once stood in Leadville, Colorado, August 2011. Mt. Massive is in the background.

Colorado, I’m so thankful to be one of your daughters. I would never want to live anywhere else!

Happy Birthday, Colorado! I love you.