Life Lessons Learned From Hair Loss

In 2013, I was officially diagnosed with Frontal Fibrosing Alopecia (FFA).  When I was diagnosed with this hair loss condition, I had never even heard of it.  Somehow, after my diagnosis, in my internet search, I was able to find an online support group for those suffering from alopecia.  Within the online Alopecia Foundation site, I found a group specifically formed to support those diagnosed with FFA.  It was by participating in this internet group that I first found answers to the questions I had  regarding my hair loss journey.

June 2013 My hair right after diagnosis for hair loss.

If you have recently been diagnosed with scarring alopecia, or if you have been suffering from it for years, I am writing this post for you because I hope that you will find support from others whom have learned to live with this disease.  If you have not already done so, I hope you will one day be able to look back on the journey and say, “I am a better person because I have this disease than I was before I had it because now I have learned so much about who I really am as a person.”  

When I was first diagnosed with this condition five years ago, I never would have believed I would one day lose over 50% of my hair, nor would I believe that I would be able to say that I that I have gained more from having this condition than I have lost.  The process of getting to this point has taken much time, many tears, much pain, and a lot of searching for answers. 

June 2014 My son’s wedding I thought I could still hide my hair loss, but then the wind would blow!

 It was not until at least a year after my diagnosis that I first learned of the Cicatricial Alopecia Research Foundation (CARF).  It is a nonprofit organization dedicated to providing patient education and support for this little-known condition.

In June of 2016, still searching for answers, searching for a cure, and searching for that silver bullet that would give me the solution that I believed had to have, I registered for the 7th International Patient-Doctor Conference in New Orleans, Louisiana, that was sponsored by the Cicatricial Alopecia Research Foundation (CARF).  I was interested in participating in CARF, a nonprofit organization dedicated to providing patient education for the little know condition of scarring alopecia or cicatricial alopecia, because it is dedicated to providing “education and patient support,” while also raising public awareness of this baffling disease, and the organization is also dedicated to promoting research into the causes and potential cures for the disease.

 

June 2016 My hair loss when I attended the CARF Conference could still be camouflaged  by wearing a headband.

Determined to find answers for this strange and baffling condition that had turned my life upside down, I was just sure if I attended this particular conference and had a chance to learn from all the experts in the field of scarring alopecia, I’d find what I was looking for: a cure.  

And so, in 2016, my husband I journeyed to New Orleans, the first time we’d ever been to this wonderful city, so I could learn more about the disease itself, find answers I had about treatment, and gain the support I needed to live with this rare condition that had struck me seemingly out of nowhere.  

While, the world of hair loss was still a very new world to me, I wasn’t a complete novice.  I’d learned a great deal about my condition from the previously mentioned support group for those suffering from Frontal Fibrosing Alopecia that was sponsored by the Alopecia Foundation online.  

I’d even written a blog post about my journey with hair loss that I had posted in the online support group.  From that post, I’d made a new friend, one whom was not a part of the online support group, but she was one whom was very knowledgeable about the condition and led a support group in a major city on the West Coast.  She had directly responded to my blog post in writing and gave enough identifying information that I was able to track her down by sending an email to her support group.  She responded by calling me.  I think we spent nearly two hours on the phone the first time we chatted.  Finally, and for the very first time, I actually was able to speak with a real live person who had the same disease I did, and who knew so much about it.  She was involved in helping with the CARF Conference, and she encouraged me to register and attend.

My ever-supportive husband also encouraged me to attend the conference.  He said he would accompany me and would spend the time I was at the conference exploring New Orleans.  And, so when the conference time arrived, off we went to NOLA.  

I remember not long after we checked into our hotel, Jim left the room to get ice, and returned saying, “You know you are at an alopecia conference when you start seeing bald women.”  I was horrified.  Bald?  My worst fear would be realized if I went bald, I thought to myself.  

Later that night, the night before the actual conference was to begin, anxious and yet hopeful, I put on my rather new custom-made hair piece that I had recently started wearing to camouflage my hair loss, and boarded a bus hired to carry fellow scarring alopecia sufferers to a pre-conference reception that was being held in a meeting room at a fancy restaurant near the French Quarter.  Before I’d even left the bus, I actually connected with women I’d already met online.   Conversations with these women soothed my nerves and made me feel less alone as I faced actually walking into a room where other conference attenders had gathered for a reception welcoming them to the conference. 

 

Custom made topper 2015

As I walked up the stairs to the meeting room, my mind went back to so many other receptions I had attended during my career in education.   Those meet and greet gatherings were always so enjoyable because I had a chance to mingle with colleagues that I knew and respected from my professional world.  I always looked forward to the conversations we would have that helped us form more personal connections, but this meet and greet with others afflicted with hair loss petrified me.  My confidence in socializing and in meeting new people had always been high, but after suffering from hair loss, I found social gatherings had suddenly become stressful.  I had lost a great deal of the confidence I had always possessed.  I felt very alone in my struggle, and I also felt very alone as I attended the function.  I only knew a few others because of “conversations” I’d had with them online, and I knew my friend I had spoken to on the phone, but she had many duties that night in making sure that all went well for conference attendees, so I didn’t feel I could latch right on to her for support and encouragement.

I’ll never forget entering that meeting room because as looked around, I was struck by how beautiful the women in that room were.  I don’t know when I’ve ever been in a room filled with more beautiful, gracious, and well-put-together women.  And the hair!  I saw the most amazing hair!  All I could think was, Why are these beautiful women with these amazing heads of hair attending a conference for those suffering from hair loss?  Soon, I was being introduced to others by the friends I made on the bus and by the friend that I made on the phone because of my blog post.  The women I met were so authentic and confident, I found myself asking myself as I studied each woman’s hair style, hair line, and hair color, Is that hair real, or is it a wig or hair piece?  Those of you who suffer from hair loss will probably chuckle when you read this because that is what we do.  We study hair lines, don’t we?

Soon, I learned each woman there was there to learn the same hair secrets I wanted to learn, and I learned we were there for each other.  In fact, by the end of the meet and greet, I was actually asking others, “Is that your bio hair?”  “How much hair have you lost?”  “What has your journey been like?”  “How have you disguised your hair loss?”  “Where DID you get that AMAZING hair.”  Others were asking me the same thing. 

Suddenly, I had a whole new group of friends who knew and understood the journey I had been on.  I could relate to them.  They could relate to me.  We were interested in each other’s stories.  Finally, I was not alone. 

The next morning, the conference finally began.  There was an impressive list of doctors and experts in the field of hair loss listed as speakers.  Always the student, and having attended so many educational conferences during my professional life, I was ready to learn as I entered the conference presentation room armed with my registration packet, a newly purchased composition book, and writing utensils

The first speaker gave an overview of the basics of cicatricial alopecia.  I took few notes, as I already knew the basics:  cicatricial alopecia is a form of hair loss accompanied by scarring.  I knew this.  I was attending the conference to learn more than just the basics about this condition, or so I thought.  Really, deep down inside, I was attending because I was just sure I would find a cure, a solution, something to STOP this dreadful disease from playing havoc with my life, my appearance, and my emotions.  

The speaker giving the overview had my attention, my pen was ready to take notes, but my mind could not seem to accept what I heard her say, “permanent and irreversible.”  I wrote those words down almost against my will.  Even as I knew these words were true, I could not fully accept them as truth.  As she spoke, I found myself thinking: She is a specialist in the area of hair loss, chairman of the board, and she knows all there is to know this awful condition, so how could she start off the entire conference program by saying scarring alopecia is permanent and irreversible? Wasn’t there something she could say that would give me hope?  I didn’t come to the conference to hear that I had a permanent and irreversible condition.  Those words confirmed what I already knew but could not accept.  

In truth, once scarring has taken place where hair once grew, the condition is permanent and irreversible.  The goal is to stop the progress before scarring has occurred.  There was so much unknown about the condition I had that I just could not begin to process it all.  Perhaps, whenever one is diagnosed with a disease that is life altering, it takes time to process what the condition or disease means to the person with the disease.  Words on a screen after doing an internet search that describe a disease or condition or disorder do not convey the full impact that diagnosis has on one’s psyche, nor do those words speak to how difficult it may be to accept and live with a diagnosis.  

Case in point: I attended the CARF Conference two years ago, and I am just now able to write about the impact it had me on my blog.  As a blogger, I had written about my family, the death of my daughter, health issues I had regarding my heart, and about a disastrous fall I had taken which resulted in six months of putting my life on hold, but I could not write about experiencing hair loss.  I had to process much of what I learned for years before I could write in depth about it.  I sank into a pretty deep depression.  I cried.  I hid.  I spent money on wigs, toppers, scarves, headbands, and hats, but I could not write about it all.

When I attended the CARF Conference in 2016, I was sure I would find the perfect treatment option for me so I could stop the devastation that comes from losing one’s hair, and so I could stop the sometimes “severe itching and burning” in the scalp that accompanies this disease.    

I did not find a cure for this disease at the conference.  No one has.  I did not find the silver bullet that would stop my hair loss.  My hair continued to fall out.  Today, much of my scalp is now covered with scar tissue that is permanent and irreversible.  

At some point in my journey, I decided that if I could even find a treatment or solution for the itching and burning that accompanied flares to the scalp that I’d be happy even if the hair continue to fall out.  Somehow, I did finally come to a place where most of the time I do not often suffer from intense pain, burning, or stinging in my scalp.  My scalp rarely feels like it is crawling these days. In fact, my dermatologist recently told me that my scalp is the “quietest” it has been in all the years he has been treating me.  But, I am not cured.  I may finally be in more or less remission, or my disease may have more or less “burned out.”  Only time will tell.  

I do not know what caused me to be at this stage in the physical manifestation of the form or scarring alopecia that I have now apparently entered.  I dabbled in using many of the drugs known to help with the disease, but reactions to the drugs, or unwanted side effects caused me to not use the treatments.  I stopped all medications and treatments except for the rare days when I have flare.  On those days, I apply a small amount of clobetasol solution, or tacrolimus to inflamed area on my scalp. 

When I was diagnosed, my disease was so advanced, and there was so much scarring that really there was little I could do about the condition. I had an advanced case before it was ever treated because I was not diagnosed until I had significant scarring.  Early diagnosis and treatment is thought to give the patient with scarring alopecia a better chance for stopping or at least slowing down the progression of the disease.

Since those early days in my journey into the world of hair loss, I have learned there is more to this journey than just finding the right medical treatment.  This journey involves doing a lot of work in the innermost parts of the mind, the heart, and the emotions.  As I have sought healing for this condition, I have learned healing is an inside job.  I have learned I must heal from the inside out.  

February 2015 My 70th Birthday Wearing a hat which is pulled down to hide my hairline at the beach in Florida.

As I look back on the nearly two years since I attended the CARF Conference, I have to ask myself what I have learned about myself.

• I have learned that my journey with hair loss is similar to the journey of loss that I experienced after the death of my daughter.  Certainly, the loss of one’s hair can never be compared to the loss of a loved one, but the journey itself is one also marked with five to seven stages that have been identified as the stages of grief.
• I’ve learned that my identity is not found in my hair, my appearance, or how I present to the outside world.  Learning this truth, is a gift.  I have more freedom in self-expression now than I had when I had a head covered with hair.  My identity has nothing to do with how I look or how others see me.  
• I have learned that I am resilient.  Resiliency can’t be taught.  Resiliency is only achieved when one goes through loss, trial, or hardship.  Resiliency is also a gift because according the definition to resilience in Mirriam-Webster, it allows one to adjust to and easily accept misfortune or change.  I don’t think that most of us actually easily accept misfortune or life altering change, but I do think that once we learn that we are resilient, we find it much easier to be resilient each time we meet misfortune.
• I’ve learned that the fear of losing most of one’s hair is much worse than actually losing a large portion of one’s hair.  Quite honestly, in those early days after I was diagnosed with FFA, and after I saw the photos of what might happen to my hair, I was consumed by fear.  After the initial shock of the diagnosis, I went into denial.  I told myself I would have a different outcome than the poor women in the photos illustrating FFA which can be found in the literature about this disease, yet when my appearance began to resemble that which I feared most, I no longer was afraid over how I might look.  
• I have learned that as in so many other areas of life, acceptance is the first step in getting on with the hard things in life.  Acceptance itself is a process.  It takes time.  It takes making peace with those things over which we have no control. 

 

My New Wig November 2017

Recently, as I spoke with another hair loss sufferer, we spoke of how we are almost thankful that we have had to have this journey because we have learned so much about ourselves on the journey.  We have learned resilience and authenticity.  We’ve learned to adapt and live life to the fullest anyway.  We’ve learned that reaching out and helping others along the journey gives us joy and enriches our lives.   

I am passionate about being involved in educating others about this disease.  Beauticians and doctors are on the front lines when it comes to being the first to observe what might be happening when a woman first begins to show signs of losing hair, but unfortunately most beauticians and many, far too many, doctors have never seen scarring alopecia and don’t recognize its symptoms.  I consulted the first dermatologist six years before I was diagnosed.  During those six years, I consulted three more dermatologists.  None recognized my disease until I finally insisted on a biopsy.  By that time, I had advanced and significant loss.

I am passionate about research for this disease because I do not want my daughters, my sons, my grandchildren, my nieces or nephews, my cousins, my siblings to have to suffer from this terrible condition.  I don’t want anyone to go through the effects of this disease.  It breaks my heart when I read of each new diagnosis.

I am passionate about providing support for others whom have been diagnosed with scarring alopecia.  I am so very grateful for those whom went before me because of the way they have taken an affliction and turned it into ways to help others.  There are so many of you out there that have led the way for me.  Thank you.

For all these reasons, I intend to write more about the hair loss journey I have been on. I will add my voice to all those others suffering from little known orphan diseases.  Scarring alopecia or cicatricial alopecia is just one of many immune disorders that qualify as orphan diseases. 

This is my disease.  I own it. I will not let it own me.

Girl Friend Party Christmas 2017 Wearing a wig and my favorite boots - a winning combination.

Valentine's Day Reflections on Love and Loss

A Reflection on Love and Loss

So many words will be spoken about love today.

Some will be forgotten by tomorrow.

Flowers will be sent.

Candy will be received.

Cards will be picked out that the sender hopes will send just the right message.

Love is in the air,

or so it seems.

I would not describe myself as a romantic.

Generally, I don't read romance novels.

In fact, if the truth be told,  romance novels grate on my nerves.

I do love to read great love stories.

I like love stories that read like real life.

I like stories that tell how love survives no matter what life throws at it.
Or I like stories where the love may not survive,
but the person survives the loss of love and thrives after that loss.

I guess I'm too realistic to be a romantic.

I've learned real love outlasts dazzling romance.

When my husband and I married, 

I had a song sung at our wedding by Michael Card.  

The lyrics to the song are taken from the Song of Solomon.

"Arise, My Love"

I love the words of this song because they speak truth.

They speak of a love that honors the loved one.

The song speaks of seeking that the love one has for the other be sealed on the loved one's heart.

Set me like a seal on your heart,
For love is unyielding as the grave.
The flash of it is a jealous fire,
No flood can quench,
For love is as strong as death.

Even though we were "older when we married,
we had not idea what life would bring us when we married.
 No one does.

Jim and Sally 1992

Since those early days of marriage, we've aged.

We've been through good times, very good times.
We've been through rough times,  very rough times,

Today, more than twenty years after our marriage, I rejoice that I can say

My beloved is mine, and I am his.

Song of Solomon 2:16 NKJV

Jim and Sally 2013

Our's is a romantic story, but it is also a story of faithfulness in times of trial and loss.
It is about two people who deeply love and respect each other.
It is about two people who are as different from one another as any two can be.
It is a story about how differences between two people give strength to the relationship.
Where I am weak, he is strong.
And, the vice versa is also true.
Our's is a story of how the relationship between two people created a great team.
It is a story of deep companionship.
I have learned a lot about love from this man that I married.

Loss has also taught me much about love.
The biggest lesson of all is:

Love does not die.

As I look at this photo that Julie took of Phoenix on her last Valentine's Day on this earth,
I am overcome with grief in many ways.
(I also apologize to her siblings if this photo causes them too much pain when they see this.)
Certainly, I am so overwhelmed with a sense of loss today that tears have been silently falling from my eyes nearly all morning.
News that a friend of Julie's just learned of her death just sent all of us back into new waves of grief.

Grief is like that.
It assaults you, the griever, when you least need or want its presence in your life.
Today, my bereavement feels as fresh as newly fallen snow.
Bereavement ~ to be torn apart.

I mourn anew.
…mourning is the outward expression of grief.

So what am I to learn about love  on this day dedicated to love?

I've learned that I am shifting and moving to a new place.
I am moving from the relationship of the presence of my dearly loved daughter being in my daily life
to
the place where
I have a deeper relationship with the memory of her.

I see the photo above and I smile.
I remember an exchange with her about the photo and the heart that she claimed Phoenix drew for her in the snow.

I am learning that my love for her has only gotten stronger as time passes.

The loved one lives on in the heart of the one who loved him or her so deeply.
For me, my love for my daughter is always fresh and new.

Not all memories of her are happy.
Sometimes, the memories are filled with anger, pain, and deep sorrow.
Other memories make me laugh.
Some memories of her fill me with so much pride.
Memory honors the loved one best when it remembers them as they really were.

The memories of Julie are sharp at times, and blurred at other times.

I no longer focus on the death of my daughter as much I remember her life.
This is a healing place to be.

Silly picture of Julie making faces with Phoenix

I feel blessed because Julie was so deeply loved by so many.
She had so many friends.
They continue to love her.
The memory of her has not died.

Oh, how I wish she were still here making memories with us,
but, she is not.

She remains safely sealed with  love in my heart.
Love is stronger than death.

Love remains.

The Long Weekend

It began Thursday evening.

Already, everyone I encountered out in the marketplace was saying,

"Have a good weekend."

"And so it begins," I thought.

"Memorial Day Weekend is upon us again."

By Friday, I had a sort of mixed anxiety running through my mind.

I was excited to have 

the long weekend

 that has always signaled the beginning of summer.

I dreaded

 the long weekend

that would forever mark the loss of my beloved daughter.

"You really hit us with a double whammy, Julie," I thought.

"We don't just have one anniversary date of your death.

We have the actual date of your death 

to deal with,

and we have a holiday weekend, when your death occurred

to deal with."

When the greetings came,

"Have a good weekend,"

I simply composed myself and said, "Thank you."

I needed all the good wishes I could get.

Jim asked what I wanted to do for the weekend.

"I think the best plan is to keep busy," I replied.

On Friday,

we went flower shopping and got my small little garden planted.

This year my garden will be pots of flowers.

I supervised the removal of much rock, the roots of Russian sage that invaded the property, and planned in my mind how I would plant the new planting spaces being created around our new home.

Our new gate for the deck.

On Saturday

we went to a matinee at wonderful old theater downtown to see "The Great Gatsby."

We loved it.

On Sunday,

We went to church.

The hymns for the day were just what I need to hear, sing, and ponder.

"ONLY GOD"

Only God can move a mountain; 

Only God can calm a sea.

Only God can heal a wounded spirit...

"O LOVE THAT WILL NOT LET ME GO"

O joy that seekest me through pain, I cannot close my heart to thee;

I trace the rainbow through the rain, and feel the promise is not vain,

that morn shall tearless be.

A photo of Julie, Amy, and Me The painted rainbow rock that Julie painted for me when she was a child

During communion, I was renewed in my spirit and thankful that my faith has sustained me through all of the days before and after Julie's death.

I am grateful for the great measure of grace that God has given me throughout all of my days.

After church, Jim and I took daughter Trinette and her husband to the airport.

It was wonderful to see this beautiful couple off to Florida for a small "honeymoon" after all these years of marriage.  Trinette looked so young and beautiful and so excited.

We then went to the cemetery to leave flowers on Julie's grave, and on the grave of my father.

On Monday,

we went to the small little town of Monument just a few miles from our house.

Jim wanted to check out a coffee shop/cafe that was there.

Serrano's was great!

My sister met us there.

We had a wonderful lunch and visit. 

We spent much of the weekend walking in our neighborhood,

sitting on the back deck,

socializing with neighbors,

and enjoying the beauty of the world that surrounds us.

Today,

May 29, 2013

marks the third anniversary of Julie's death.

I'm going to lunch with my dear friend, Linda Button.

Dr. Linda Button Sally Wessely presenting at CCIRA Conference 2013

Linda has been there for me as a friend, sounding board, encourager, and sustainer throughout these three long years.  I treasure her friendship.  It is unbelievable that we now live in the same town and attend the same church. I don't know what I'd done without friends like Linda these past three years.

I try to keep my memories of Julie alive and well.

I find that in my mind, Julie belongs to another realm now.

Without my wanting to, I've assigned her to another domain.

She seems to be a part of a life that no longer exists.

A part of me died when Julie did.

Does the death of a child ineluctably cause a part of a mother's heart to die?

There are days when the clouds fill the sky and threaten storms.

In those moments,

I am reminded 

that the sunshine follows the storm,

that rainbows bring hope and symbolize promises,

that with each spring there is new growth.

I've not walled off that broken heart.

I'm allowing it to heal.

I am moving forward.

This weekend,

I focused on

living.

For those of you who wish to remember Julie

I'm adding two videos.

Watch them later in they are too real of reminders of that beautiful woman that we lost.

In Memory of Our Beloved Jules

April 8, 1976 - May 29, 2013

Julie & Mason

Mother's Day 2008

Julie & Hannah

Mother's Day 2008

I'm in your corner...

I'm learning that dealing with grief is like being in a boxing ring.  I must confess that I've never been in a boxing ring, but I'm sure that there are many comparisons that can be made between boxing and dealing with grief.  Let me give you a few examples of why I have been thinking how dealing with grief and boxing are similar.

A boxer enters the ring expecting to take some blows.  I'm sure that after the first few powerful punches, the boxer learns that he must have the courage, the fortitude and the self-confidence to get up again each time he or she is knocked to the ground. Grief, like boxing, delivers some pretty powerful punches.  Unlike the boxer in the ring, the person who is dealing with overwhelming grief and bereavement, does not always expect the next punch.

I sometimes forget I am in a fight, one that I hope will lead to healing and acceptance of that which I cannot change. I get busy with living life and dealing with the day to day demands of being a wife, mother, grandmother, daughter, sister, friend and teacher.  I think I am carrying on quite well.  The house is cleaned, the Christmas decorations are mostly up, and I am busy with my social and professional life.
Then, out of nowhere, I am knocked to the ground by thoughtless, seemingly uncaring, remarks or by unrealistic demands.  I get up and keep going forward.  I remember that not everyone knows that when a  person is dealing with grief, each day is struggle.  Not everyone understands that the first year in the journey of grief can be a very rough trip.  When I get knocked down by someone else, I try to forgive, get up, and press forward.  I am determined that no one will steal my joy during the holiday season.

Then, the next punch comes.  This type of punch is the hardest to bear.  It is the punch that memory delivers.  I just happened to come across a photo, one I didn't remember seeing before.  It was a photo taken of Julie last Christmas in Utah.  Last year, she wanted to be with the Utah branch of the family for Christmas, so I had given her an airline ticket as her Christmas gift.  In the photo, there she was, very much alive, stunningly beautiful, and, as always, smiling at the camera.  She is surrounded by two of her siblings, her sister-in-law, four of her nieces and nephews and her father.  She is happy.  She looks like she is at peace.  She looks as if she doesn't have a care in the world and is only enjoying being surrounded by family.

The fam at Snow Basin, Utah

Then, I study the photo of Julie with my oldest son, Ryan, my oldest daughter, Keicha, and her father, and my former husband, Barry.  It just looks like a typical family photo.  No one knew it would be the last time that the four would gather for an informal recording of a family gathering.

Keicha, Barry, Julie, & Ryan

Julie and Sheridan

Julie had many friends.  She kept in touch with most of them on a fairly regular basis.  While she was in Utah, she met up with Sheridan, her dear friend and roommate from her University of Utah days.  There's that dazzling smile and those sparkling blue eyes again.  That smile, those eyes, they never fail to deliver a punch theses days.

But, I digress, I was writing about how dealing with grief and boxing are alike.  One would never step into a boxing ring without training and conditioning for a fight.  Unfortunately, when death visits a family unexpectedly,  there has been no warning that one should have been training for the fight of one's life.  I've learned that's where faith comes in.  After many years of building a solid foundation of faith in God, I can say with assurance that I have believed totally and utterly in the absolute sovereignty of God.   Because of that foundational belief,  I have been able to keep the fight of faith going as I struggle with the pain of loss, regret, and sorrow.  After the loss of a child, especially to suicide, I believe it is safe to say that one's faith is either lost, found or strengthened.  My faith has been strengthened.  The fight of faith continues to go on.  Truly, "morning by morning, new mercies I see."

There is no doubt that, just as the boxer needs people to coach him, to help him in his training exercises, to encourage him when he is down, I have also needed people in my corner.  I have had many.  My husband is my mainstay.  When one enters the ring to fight, it becomes very clear where your friends are.  You know who is really pulling for you.  So many of my friends and family members have been there for me before I even asked for their help.  Julie's friends have also been there for all of us.  Team 8:08 has been the best!

I heard a story that Dan Rather told about being in the boxing ring.  He said that when he was knocked to the ground and did not think he could get up, he heard a voice in his corner and it kept calling his name.  He said that was how he was able to get up again.  I've heard your voices, those of you who are in my corner.  I hear you calling my name.  Thank you for being there.

Heartache - Living the Definition

Julie looking out over a great divide

Until the death of my daughter in May, I had never really experienced grief.  Yes, I've had my losses.  Who can reach the seventh decade of life without experiencing loss?  Those losses, some of them quite significant, pale in comparison to the death of a child.  


A few months ago on an especially painful afternoon, the acute sorrow that I felt gave me new meaning to the word heartache.  Heartache was no longer just a word to me.  Heartache, a noun, a thing, could have become a proper noun and been capitalized as it applied its meaning to my life.  

I felt as if I were actually experiencing the origin of the word.  In fact, I said to my husband, "My heart hurts."  The pain I felt during those first few weeks after my daughter's death was visceral in nature, constant, and debilitating.  Many times I felt terribly alone in my pain, not because I did not have support or love surrounding me, but rather because the external love and support around me could not break through to touch the deep heartache in the core of my being.  


Heartache is a condition that is experienced internally.  Even as I went through the external motions of life, the internal reality of loss, shock, pain, anger, and sorrow never seemed far from the surface.  Thankfully, during that time, and now, I have been able to accomplish the external motions of living.  

A dark black line was drawn down the timeline of my life on a Saturday morning in May.  That line marked life before Julie's suicide and after her suicide.  At times, the divide seemed too wide and too deep to ever cross.  The divide that seemed too wide and deep to ever cross will always be there, but the depth is not as deep as it once was, nor is it as wide.  Somehow, carrying on traditions from the past link the two periods of my life together.  

Gardening, walking, reading, writing, journaling, those activities which have been a part of the daily and weekly fabric of my life, have helped me transition into the resumption of life before I walked through life with great heartache.   Lunching with friends gave me a feeling of normalcy.  

Last week as my husband and I attended the first football game of the season for the high school where he served as principal, I was aware of how important it is to continue many long established traditions while one is on a grief journey that involves great heartache.  Sitting on the 17th row of the football stadium, surrounded by a sea of black and white, listening to the high school band play, felt normal.  

Heartache's intensity has decreased as I have gone about the business of living and grieving.  I believe I am somehow melding the those two opposites into the whole of my life.  I was once told that one must integrate all the events of one's life to truly heal.  Perhaps, I am integrating the ability to live each day the best that I can with the process of grieving.  By doing this, I realize that I am becoming a the person who will be forever heartbroken, but I will also be one who strives to live a rich and productive future.

Buster Brown Jr. - What a wonderful dog you were!

The kitchen floor is less clean these days, and the carpet no longer yields a canister full of hair after a vacuuming.  Without Buster, we are learning that he kept the area around the kitchen completely free of little crumbs that we now find must be swept up.  Yes, Buster, our beautiful golden retriever is no longer with us.  Above is a photo of Buster in his favorite spot: near the table and next to Jim.  He is no doubt waiting for a crumb from the cereal bowl to fall on the floor.

On June 1, 2010, three days after the death of my beloved daughter, Julie, Jim and I had to make the unexpected decision to put down our dog.  It all seemed surreal.  At the time, we could hardly believe what we were going through.

We knew Buster had not been himself, and he had been taken in to the vet quite a few times in the past six months, but somehow, his condition was never diagnosed.  It turns out that Buster had cancer in his lungs and in his heart.  One of the tumors in his heart burst while he was staying with Jim's daughter, Thia, in Colorado Springs.  Thia called with the news and said she was taking him to the vet.  Thankfully, they were able to diagnose his condition and give us the information we needed to make the decision that the right thing to do would be to put him down since there was nothing that could be done for him.  The vet was able to keep him alive until Jim and I could drive from the Boulder area, where we were in the midst of planning Julie's memorial service, to Colorado Springs to be by his side for his final moments.  In many ways, it was healing for me to be able to be there with him as he passed from this life to the next.  Jim and I both held and petted our beloved dog as he took his final breath of life.

Technically, Buster was my dog.  Jim gave him to me for Christmas in 1999.  He was a scrappy little puppy who immediately went to work chewing everything he could find.  I think Jim expected Buster to automatically be as perfectly behaved and wonderfully trained as Buster's predecessor Red had been.  Buster would require much training, especially since he had to cope with two  very different "parenting tactics."  I was the one who expected a very tightly controlled, well trained dog, while Jim preferred to indulge our spoiled pet.

Somehow even though Buster was a handful and a challenge at first, it became very evident early on that Buster was really Jim's dog and would become his best buddy.  I'm not sure if this photo is prophetic or not, but please note that Jim is only wearing one sock.  Do you think he had taken his sock off and Buster had grabbed it and begun his life long habit of chewing up and eating socks?

No matter what his bad habits were, like eating socks, kleenex, and chewing up the back deck so badly when he was a pup that we had to have my son Jon and his wife Samantha rebuild the deck, Buster won over the hearts of our family right from the very beginning.

Buster was born in October of 1999.  My two grandchildren, Mason and Gillian, had been born the previous October.  Buster became the childhood companion to the grandchildren when they were at Grandma Sally's house.  That is one reason why we wanted a golden retriever.  They are awesome with children.  We never had to worry about him being anything but gentle and loving around the children.

I remember when one of the grandchildren at about age two or three looked into his eyes after petting him and said, "He has real eyes."  I guess he seemed like a big stuffed animal, except that this fluffy pet was alive.
                                                

                                                                         

He loved the grandkids and would be so excited whenever they came to visit.  The photo above was taken just a year ago.  He still looked healthy and young as he played with Atticus.

After Jim retired, Buster became his constant companion.  Buster sat at Jim feet as Jim read the morning newspaper and patiently waited for the daily walks at the river walk.  They had a routine.  Buster knew that Jim would be faithful in feeding him in the exact amounts twice a day at the same time.  Buster's weight was managed carefully even though ours was not!  Buster could count on being groomed once a week on Sunday afternoons by Jim.  He also loved his monthly visits to the professional groomer.  Believe me, this dog was treated very well.  Some might say that he was very spoiled.  Spoiled or not, Buster was the most loving dog ever, and he loved his good and kind master very much.

Julie's dog, Phoenix, was one of Buster's playmates from puppy days.  Phoenix, a yellow lab/golden retriever mix was a rambunctious alpha dog.  It was always a wild time when the two of them were in the yard or in the house.  Many happy times were spent by all of us with these two beautiful dogs.   This photo of Buster and Phoenix surrounded by Hannah, Julie, Keicha and Mason was taken a year ago.

Buster's days were spent just being our loving companion.  He spent time with us on walks and trips to the mountains when we had the opportunity to get out of town.  Or, he loved to sun himself on the porch or the patio.  The yard was his domain.  That is another thing that has changed.  We now find the squirrels and the neighborhood cat have been daring to hang out in our yard.  Our guard is no longer on duty.  They feel free to run from tree to tree without being chased from our premises by our watchdog who only barked if something or someone got into the backyard.

The last few months of Buster's life were most spent with Thia and her family.  He stayed with them as we went to Europe and then during the time we were out of town dealing with the aftermath of Julie's sudden and unexpected death.  We are grateful that he was with family and children in his last days.  He loved being with the kids.  Rachel and Nicole could not have been better caregivers.  They upstaged their grandpa by brushing Buster each day when they returned from school.  I love this photo of these two beautiful girls in a beautiful setting with a beautiful dog.  Thanks, Nicki and Rachel for taking such good care of Buster!

The last family gathering that included Julie, Buster, and Phoenix, who now lives with Julie's friend Jason, was held during the Easter holiday of this year.  Little did any of us know how much our lives would change in just a few short weeks.  I am so grateful that we gathered on the front lawn to take that last family snapshot together.  

Julie is trying to get Phoenix to pose for the portrait.  Buster is paying attention to Julie.  Jim is surrounded by our wonderful family and his dog, as always, is near his side.  We all had a wonderful time that day.

 Our sad good-byes would come later.  As Buster passed from this life into the next, I whispered in his ear, "Go be with Julie."  I wasn't sure of my doctrine on my last words to our beloved dog, but later, I found a quote in a book I've been reading about the great theologian Dietrich Bonhoeffer.  Bonhoeffer said, "Look, God created human beings and also animals, and I'm sure he also loves animals.  And I believe that with God it is such that all who loved each other on earth - genuinely loved each other - will remain together with God..."

Jim and I are at an end of an era.  The grandchildren are no longer babies.  We have transitioned fully into retirement.  Our loved companion is gone.  We have lost a beautiful daughter.  We do have many wonderful memories of all of our times together.  For that we are grateful.

Our formal, family portrait of the three of us was taken when we were all a bit younger!

Lift Your Eyes

Just before my senior year in high school, my father was transferred from Pueblo, Colorado to Leadville, Colorado. Needless to say, I was not very happy that I was uprooted and moved away from the happy high school life that I had in Pueblo. I was convinced that life two miles high in the Rocky Mountains of Colorado in a small former mining community would be unbearable. One cold summer afternoon when the rain finally stopped, I looked out of the window of our house and said to my mother, "I hate this place. It is ugly. All I see in this town is mud." Her response has stayed with me all this years. She said,"Sally, you need to lift your eyes. Look above the mud on the ground and look at those mountains." The magnificent Mt. Massive, still covered with snow, seemed to fill all of the horizon above the street for as far as the eye could see.  I did learn a life lesson in that moment.  Focus is everything.  What do we see when we look beyond the window?  Where do we wish to focus our view of the world around us?

One of the first things that my son, Jonathan said to me after Julie's services was that he wanted to come to Pueblo to help me build a garden to honor Julie.  Since I have a great deal of yard that still needs to be landscaped, I was thrilled to think that we might begin to work on this project together.  Jon, wearing his traditional lungi from Bangladesh decided that the first order of business would be to install a fountain in the flower garden that is being developed on the side of the house.  This turned into an all day project, but, we finally had it installed and working.  Of course there was some water fun that kept interrupting the work!

While Jon and his wife Samantha worked on the fountain installation, Atticus joined me in planting some flowers.  What a joy it was for me to sit around a small flower garden with my grandson and dig in the dirt.  The curious sort, he had all kinds of questions and observations.  We decided that he should be a botanist someday so that he could study about dirt, bugs, plants and other interesting things.  I must admit that I used my influence to try to lead him in the direction that I think would be such a fascinating field.  He hoped we'd find a worm.  We did.  I went and got my brand-new jewelers 20X illuminated magnifying glass(my graduation present from Colorado Master Gardeners), and we looked for the worm's head.

Jon and I finally selected a spot for Julie's Garden.  We decided it should be the trampoline since that is a gathering place for kids of all ages in our family.  Also, that part of the yard is totally ugly and hot and could use some help.

I came up with the picture of the dream corner I wanted to create from a gardening magazine.  (Our spot is still a very long ways from looking like the picture!)  We thought a small patio next to the shed would be nice to build.  This would give us a place to have a small bistro type table.

Now that we had a vision, some bricks and two men to get busy on the work, I could leave the work up to Jon and Jim.

Jon had a lot of work to do just getting rid of weed guard, the bark and leveling the ground.  Then, he and Jim brought in some sand to make the foundation for the bricks.  (These bricks used to be the bricks in our old patio on the side of the house. I guess they've been moved a few times now!)

Since Jon is young and has his original knees, he became our official bricklayer.  He has been watching a lot of the men in Bangladesh put down the bricks for roads by hand since he got there, so he knew exactly what to do.

PLEASE NOTE:  The corner behind the shed that we selected, is less than perfect due to the fact that our neighbor just that day came up with his solution to the fence I had Jim tear down that was falling into our yard.  Don't you love the orange, plastic fence?  Since our neighbor has not been interesting in sharing the cost of fixing this old fence, I guess I am going to have to pay him a visit soon so we can discuss how his choice is not working for me.

After a long, hot day doing the brick work, Jon, Jim and I drove to Canon City to get some trees.  We wanted a tree for this area that would:  a)not get too big, b) shade the small patio and trampoline, c) be the most beautiful around either Julie's birthdate in April, or the date of her death in May.  We selected a Newport Plum.  I love it because the leaves will always have a rich burgundy red/orange color.  In the spring, it will be covered with vanilla colored flowers with burgundy centers.

We also decided to replace the tree that we removed last summer.  We need the shade for our main patio and for our bedroom.  An Autumn Purple Ash was selected.

The trees were not delivered until Jon had left for home.  It was a wonderful day, when they were delivered and planted.  Planting a tree and building a garden are very healing ways to grieve the loss of a loved one.  In this case, I can't even tell you how much comfort it gives me each day to look out and see Julie's plum tree.  It reminds me of her somehow.  I think that sometimes when she used to dye her hair red, it would almost be this color.  Maybe it is just that it is a tall, beautiful thing of beauty that stands out in nature.  I think of her that way.

                                                       The beginning stages of Julie's Garden
                                                                      The Newport Plum

Each day, I gaze our my window and lift my eyes.  I see the two trees we planted.  It gives me comfort to see these trees and think about how they will grow and shade my home, Julie's Garden, and the trampoline for years to come.  They represent hope.  They represent inspiration.  This will be a place for healing, a place for laughter, a place to remember times past, and place to create new memories.  The trees allow me to lift my eyes and see beyond this earth.

Life Altering Events

In Memory of My Beautiful Daughter

Julie Ann Christiansen

Once upon a time, I was going through a terrible time in my life. I decided to keep a journal about what I was going through. The problem was, I didn't want to write down what I was going through because it made it all too real. Words held too much power for me. They seemed too final. It seemed better to just talk around things. It seemed to me that if I just didn't write down what I was going through, I could reverse the events, results, and feelings much more easily than I could if I recorded what was really happening.

Sadly, even if I never write about the great loss I recently suffered, it will not go away.

On Saturday, May 29, 2010, I lost my beautiful daughter, Julie Ann Christiansen. She lost her long battle with depression. I had 34 years with her, and for that I am grateful.

My husband and I have been staying in a Residence Inn in the Boulder, Colorado area since last Saturday dealing with the reality of our loss, spending time with our other children and grandchildren, and doing all those things that must be done after a death. Today, we returned home. I realized that for the past week, I have been wrapped in a very protected cocoon. I was ensconced in a neutral, motel suite where my bed was made each morning, where my room was cleaned and tidied, and where my husband went to the lobby each day to get my breakfast and bring it back to me in my room.

For a time, my sister and her husband were right across the hall. My other children and grandchildren were just a short drive away. My siblings came to my side. My nieces and nephews came from all over the state and from Texas, California and Boston. Friends came from Virginia, and Florida. Many traveled from various parts of the state to be by our side.

I have been surrounded by people who love me, my daughter, my family. I will be forever grateful for the love, support and messages of hope, and peace, and love that came our way. I have been changed by the kindness of others. I hope I can use this lesson of love to help others.

I came home today to a yard full of weeds. I am thankful for them. I need a lot of weeds to pull.

Answers will not come easily anytime soon.

I post this entry only because I wish to honor the memory of a beautiful gift that I held for a little while. I wanted more time with my sweet Julie. I didn't know I didn't have it. I will never again take for granted the days that I have remaining with my other children and my grandchildren. I am sustained by their strength, their support and their love. Each of my beautiful children is a blessing. Their intelligence, sensitivity, wit, sense of fun and good humor has helped me through this time. I am grateful that they have each other, and that they have used this bittersweet time to strengthen their bond of love and support for each other.

For now, I will treasure the memories, take comfort in knowing how many people loved my daughter. I will go forward leaning on the grace that has sustained me throughout this entire life altering event.

Today, I told my husband that I will not be defined by this loss, nor will I allow the wonderful, beautiful, spirited, brave and good spirit of my daughter to be defined by a disease that robbed her of so much.

Life has been forever altered. I will be learning many new lessons on life, loss and love. Mostly, I hope to honor the one that has left us by fully enjoying and supporting the ones that are left.