Monday, April 29, 2019

Blogging ~ Who Is My Audience?

Of course that is the question...In the early days of my blog, sometimes I wondered why I continued to write it.   One of the first questions I had as I began to write was: Do I write for an audience? I concluded that this was a question that did not have just one answer.  

As I sorted through why I started this blog, I came up with reasons. Here are some of them.

Writing for Writing’s Sake

I have always enjoyed writing and have kept various types of journals over the years. I kept sporadic journals when my children were small as an attempt to just try and keep some sort of record of what life was like during that period of my life. I didn't really have an audience in mind when I kept those journals, but they were often more than just some sort of daily log of experiences. 


I wish I had been more disciplined in my journal attempts during those days because now, I do have an audience for what I wrote during those busy, hectic times: myself and possibly my children. 

Many young moms began blogging when I began blogging. They created fabulous blogs full of wonderful pictures of their children. They were pretty blogs filled with flowers and flowing designs. They represented the technological gifts that this generation of moms have developed. I envied these young moms and their blogs because they will have a precious record of their lives with their children. What a gift and a blessing. What I wouldn't give to have the same type of archive of my children’s' activities when they were young.  I often wondered if these moms were clear on the audience they were writing for.  Were they writing to leave a record?  Were they writing for other moms?  Were they writing for parents living far from where they lived?

Writing for An Audience

When one writes, the audience does not always present itself immediately. We write because we have a need to record our lives. We write to express our dreams, our needs, our disappointments, our heartbreak, our insights, or even as a means of trying to make sense out of what is going on around us. Writing is intensely personal, and for that reason, we are sometimes hesitant to put down our most intimate thoughts and emotions on paper because we fear an unknown or known audience. Audience can intimidate us and cause us not to write or not to write well. 

When I reflect back on the time I was teaching high school English, I now see I might have confused my students when I taught about audience and writing. I would tell my students that they did not need to consider audience when they wrote in their journals. In fact, I encouraged them not to think about the reader while writing. I told them that they were just to write. They did not have to worry about punctuation or spelling or any other grammatical rules as they wrote in their journals. I just wanted them to feel free to write without being intimidated by feeling that they must write perfectly if they were to write at all. I told them to focus on developing voice. 

Many of my students would write stunning journal entries. They would amaze me with the uniqueness of their individual voices. I would get glimpses into their true selves through their journal writing. Sometimes, I would be heartbroken by what they had to share. Sometimes I would be alarmed. Always, I was grateful that they trusted me enough to write transparently and honestly when they knew I would read what they wrote. I was their audience, and they trusted me enough to write honestly. 

Other times, when the students had a writing assignment, I would teach about audience. I would remind them that they should consider their audience when they wrote. Unfortunately, many times, these formal writings lacked an ability to touch any type of audience. They became stilted, boring, and seemed to only represent some sort of stylized writing that came about from trying to follow the form style writing that they had been taught in previous years of schooling. This writing would lack life. It might be perfectly representative of a five-paragraph essay, but it lacked true meaning. The concept of writing for an audience was difficult for many students to grasp.

Can We Ever Fully Anticipate How Our Writing Will Impact Our Readers When We Sit Down to Write?

When I was teaching, my father became very ill and was hospitalized just days before he died. He was hospitalized just as my teaching quarter was ending before Spring Break.  Just before I left to drive to his bedside, my students took a quarterly essay test that had to be graded before I could leave town. 

On that test, my students had to respond to Li-Young Lee's poem, "The Grandfather." Their audience was:  me - their teacher. Their purpose was: they wrote to get a grade. They clearly understood their audience and purpose.

Interestingly, after all the responses were read, the grades were assigned, and I had left my role as teacher to drive to my father's bedside to become a daughter who only had a few more days to spend with her father, I found that my focus as an audience who had read assigned poetry responses shifted. I found myself recalling the poem, and even more importantly, I recalled the responses my students had shared with me about the poem in their responses on the test. 

Their words began to comfort me. They gave me strength. They allowed me to peacefully surrender myself to the moment I found myself in at my father’s bedside. I saw these last moments with him in a new way as I reflected on all my students said about “The Grandfather,” and about the poem itself.

 I realized the power of the written word in a unique way. The freshness of my students' youthful responses that spoke of the value of caring for the elderly grandfather while treasuring his final stories spoke to me. I will never forget how comforting my students’ words about the last days with a grandfather were to me. Neither my students nor myself had any idea how those words would be remembered by the reader who first read them as a teacher and remembered them later as a grieving daughter sitting by her father’s bedside as he lived his last few days.

Why I Chose to Write A Blog Even When I Was Unsure of An Audience

Blogs that are successful, seems to require audience. One would not continue to blog very long if one did not have some sort of audience. In the beginning days of blogging when I first began this blog, one of the beauties of the blogging was the ability to have a place where one could post something that could generate an immediate response if it was read by anyone at all.

When I first began the blog, for months it seemed the jury was still out on how long the blog would last. I was not sure of the benefit of the blog except for serving as a place where I could create a bit of a history of what was going on in my life at the moment. 

I was newly retired. I struggled with my new status at times. I missed the academic life, and yet I was also happy to leave the daily demands of it behind. I missed my students. I missed the interaction. I missed my audience. That is one thing a teacher always has - an audience. As I used to say, "Just give me a stage!" 

But, I also thought that my classroom was a place where we were all learning together. I liked to think that I created a more generative, constructivist type of classroom. It wasn't just like the classrooms where I went to school. I always hoped to create a classroom that was interactive and interesting. 

Certainly, if a blog is going to be successful, it must be all of those things too. I have loved blogging.  I have decided to make a shift in my blogging experience.  This shift will occur next month when a new blog is launched.  

In the meantime, I am gathering ideas to inform my blogging experience.  This is new territory for me, but so was blogging when I first began writing.  One thing is for sure, I am learning all kinds of new things about writing, about audience, and about what goes into blogging in 2019.  Things have changed since 2008!  That is for sure.

Tuesday, April 9, 2019

Grief ~ I Know Your Name

In Memory of my daughter 

Julie Ann Christiansen
April 8, 1976 - May 29, 2010



Name It


Grief 

You come and visit again on days like this. 

You know the date well because you always show up on this day.  Always. 

I know you.

I know your name.

I know all the thoughts and feelings that bring with you when you visit.

Sometimes you enter the door of my heart in bursts.  

Yes, Grief, your short, unexpected visits are named  ‘Grief bursts.’

Other times you come and visit and stay for days, longer than I would like you to stay.

But let me tell you something, Grief.  While I am well acquainted with you and your visits, I have learned something about another visitor that makes you seem like a rather simple emotion.  

The name of that other visitor to my life is 

Bereavement.  

Bereavement is more complex than you are Grief.

Bereavement speaks of the tearing apart that was left in my soul, in my heart, in my body, in my family circle when my dear Julie left me.  

Bereavement left me unable to function, to get out of bed, to cook a meal, to pick up one foot and put it in front of the other.  

Bereavement left me feeling robbed.  Yes,  robbed.  When I wonder just what my beautiful daughter would like like today on what would have been her forty-third birthday, I feel robbed.  

I feel robbed when she isn’t here for family holidays, for special occasions, for memorable event.  

I feel robbed when I can’t call her up and hear her voice.  When I can’t hear her speak of her take on events, politics, movies, books, family matters, work, life, and love, I feel robbed.

And, more than that, I think of how she was robbed of a life that, “woulda, coulda, shoulda” been her's to live.  




Monday, April 1, 2019

Don’t be Fooled by April

In March and in April, the daffodil heralds the coming of spring.  For some, spring is a difficult season.

For some, April truly can be the “cruelest month.”

As I look back over the springtimes of my life, I associate this season of life with daffodils.  Today, I’d like to use this flower, this motif for my life, to remind us all not to be fooled by April.  It has long been known that the coming of spring also increases the risk of suicide.  This is a difficult topic to write about, and to read about, but today, I think as we look forward to warmer days ahead, we also should be vigilant and watch for an increase in suicidal thoughts and behavior.  

**********
Daffodils

As a child, I once picked daffodils and pretended they were the mouthpieces mounted at the top of a candlestick telephone.  I called them “telephone flowers.”  They became a favorite very early in my life.  

Yes, I am old.  Many of you might not even know what a candlestick telephone is.  Google it.  You might then see why my imaginative mind saw the bright jonquils blooming in the front yard of my childhood home as play telephones.  



Daffodils.

As a very young person, I began to think of them as my flower, the one that symbolized my optimism about life.  They reminded me that there was always new life that would spring forth no matter how dark, cold, and bitter the winter had been.  I lived in the mountains of Colorado as a teen.  The snow was deep, and cold, and some years did not melt until spring itself was nearly over.  Bundled in winter clothes, leaving the cold mountain hilltops behind, we would sometimes travel to the land of springtime found at lower elevations for a short visit to see my grandmother.  I still remember the joy I would feel when I saw daffodils blooming because I knew that surely spring would find us soon, even in the mountains.

*******

When I think back to my first years of adulthood,  in my mind’s eye, I see the driveway leading to my parent’s home lined with blooming daffodils when I first met and fell in love with the man I would marry over fifty years ago.  Perhaps, that showy burst of bright color was partly to blame for the optimism and excitement I felt that spring when love was new and I unable to see anything but happy possibilities.  


Daffodils.

One April morning 43 years ago, I was awakened by labor pains.  As my husband and I pulled out of our own driveway to head to the hospital, I took note of the daffodils blooming in my yard.  Later, in my journal I recorded the events of the day when my fourth child and third daughter was born by writing, “The daffodils blooming as I headed off to the hospital to give birth to this beautiful daughter seemed to say, “You are having a spring baby and all is right with the world.”



Daffodils.

Their message to me has always been a message of joy, renewal, rebirth, life after death.

That love affair that began so many years ago when the daffodils were blooming led to marriage, the birth of five children, and a bitter divorce.  

My love for daffodils did not change.

Dishes, bowls, vases, picture frames, tablecloths, I have many that are decorated with the daffodil motif.  They are brought out every spring to brighten my days and my home.


*******

Once when that springtime baby born in April was grown, she went to Dublin, Ireland, in the spring.   While there, she came across a field of daffodils and had herself photographed sitting among them so she could send the photo to me.  


There she is dressed in green, her favorite color, a color she wore so well, sitting among the daffodils, and thinking of me as she smiled for the camera so that the moment could be recorded and sent to mom as a keepsake of her trip to Ireland.

*********

I think that for some of us, some symbols, some motifs, some flowers carry powerful messages for us throughout our lives.  I think of the happy memories that are created as we collect pictures in our minds of times when those symbols bring us great joy, peace, hope, or comfort.  Daffodils have always been that symbol for me.

The symbol, the flower, does not in and of itself hold power in my life, but rather, the power lies in meaning I have assigned to it.

Daffodils always make me think of:  newness of life, rebirth, hope, springtime, beauty, Easter, the resurrection. 


Indeed, daffodils are often called the Lent Lily.  

*****

When, that April baby, the one born when the daffodils were blooming, my beautiful daughter Julie Ann, took her life, it was in May of her thirty-fourth year.  She had been  with me when the daffodils were blooming for one last Easter celebration just weeks before her death.   The family had come together to hunt for eggs filled with candy, color Easter eggs, and celebrate her birthday.  The last one she would ever celebrate.

She sat on the grass that was just beginning to turn green and posed for one last photo with her sisters.  

Keicha, Julie, Amy
April 2010

I did not know that I would never see her alive again when I snapped another photo, the one I took later in the day of just her with her dog Phoenix.  

Julie with Phoenix
April 2010

I snapped that photo, never dreaming that within a very short amount of time, I would have to pick out a headstone for her final resting place and wonder just what I would put on that stone.  Her name.  Her birth date.  Her death date.  All of that was hard enough.  Still, I wanted something else there on that stone, something that spoke to me.  A flower?  Would a flower be nice on that stone?  Sadly, none of us could remember just what her favorite flower had been.  Had she ever said?  If we had known, I guess I could have had that flower engraved upon that stone, but I honestly didn’t know what her favorite flower was, and so I had a daffodil carved next to her name.  

Daffodils are supposed to have bright color, and they are supposed to “flutter and dance in the breeze” as they are characterized by Wordsworth.  They are not supposed to be carved in stone, but I needed some sort of reminder that my beautiful girl had been bright and beautiful and youthful and had always reminded me of spring when I looked at that cold stone that marked her death.  I needed something to remind me that there was life after death.

Yet, when I saw a daffodil on her tombstone, it seemed as incongruent with that jocular flower as thinking of my daughter as dead seemed incongruent with everything I knew about her and about life itself.  Yes, when my daughter took her life, everything I thought I knew about life no longer fit.  

The season of grief is one where flowers do not bloom in one’s heart and soul except when one remembers times when flowers bloomed when the one we grieve was with us.  

******

I am now entering the ninth spring since Julie left us.  Daffodils again cheer my heart and bring me comfort.  They speak to me joy, and renewal, and hope, and the beauty that comes after a long, dark, cold, winter.  They speak to me of life, life for now, and life after death.

I am not the same woman I was when I first became acquainted with unspeakable loss.  

One of the first things I wrote after Julie’s death was that I hoped to integrate her life and death into my life in a way that was healthy, honest, and truthful.  I did not want to wall of that part of my life which brought me deep  pain.  I did not want to compartmentalize anything about my life.  I wanted to integrate all of the parts into a whole that had meaning and healing and purpose.  Julie would want that for me. 

**********

Last Easter, I gave a small pot of miniature daffodils as a gift to someone I loved.  When I left to return home after my Easter visit, I was told, “Take the flowers with you.  I don’t want them.”  And so, trying not to be hurt, I did just that.  I took the flowers with me.  

They didn’t last long.  


Soon the blooms were dead and began to dry out.  For some reason, I could not throw that plant away.  Instead, I marveled at the beauty of the shell of the bloom that  was left behind.  The color was lighter yellow than the color had been when the plant was in full bloom.  The shapes were reminiscent of the blooms when they were in their most beautiful state.  I thought they were still beautiful in this altered condition.  



I carefully took the spent blossoms from the dried stems, collected the dried flowers, and put them in a glass basket.  When spring was over, I left the dried flowers in basket as I put it away.


I took this basket out again this spring.  It sat among the fresh daffodil bouquets for several weeks.  I kept asking myself why I kept those dried flowers and what meaning I could find in them.

Finally, it came to me.  

Spring is hard for so many.  If one is suicidal, or depressed, or suffering from mental illness, one just might not see daffodils and the coming of spring the way I do.  The depressed, the one struggling,  might not see hope, optimism, and happy sunny days ahead when spring arrives.

I knew from my study of depression, mental illness, and because of the knowledge I had learned about suicide, that many are at risk for suicide more in the springtime of the year than at any other time of the year.  

Where I see possibilities for happier days ahead where the flowers will again bloom, others see dried out dreams and memories from yesterday and a future that seems fruitless and not worth living.

********

If I could change one thing, it would be to have been aware of my daughter’s true state of mind in that last spring of her life.  I would ask her those hard questions that I had asked her before in times when she expressed suicidal thoughts.  I would ask how she was really doing.  I would ask if she were thinking of harming herself.  I would do anything I could to get her the help she needed in her darkest hour. 

This spring, in her memory, I ask you to think of those you love whom might be at risk of suicide.  Know the risks.  Know the signs.  Ask the hard question.  Make that phone call.  Get help for them and for you so you can best help them.  

Please visit the American Foundation for Suicide Prevention and educate yourself about the risk factors and warning signs that someone you know, or someone you love, might need your help.  

Don't be fooled by April.  Not everyone will experience spring the same way.  





Saturday, March 23, 2019

Saturday Summary

Saturday Summary


What a week it has been!

Saturday, March 16

I hosted my high school girl friends for lunch.  We meet every three or four months for lunch.  This time, it was my turn to host at my house.  Thankfully, my dear friend Dove, here from Vermont for the party, co-hosted with me.  We had so much fun decorating the table, ordering the food, and rearranging the house to accommodate everyone. 

The group follows a few routines.  First things first.  Margaritas are made so we can toast one of our classmates that started the group.  She is no longer with us, but we remember her and all the others whom have passed with a toast.  As we get older, I notice we also toast that we are all still able to get together to make a toast to the past, the present, and future. 



We then take a photo of the group.  We do this right after the toast so we don’t forget to take a photo. 

New Learning and A Word About These Photos:  

I took them using my Nikon DSL3200 on the timer setting.  Woot woot!  That took some doing.  I had to find the tripod.  I then had to find the “how to” guidebook for my camera.  I then had to find the do-jiggy or whatchamacallit to attach the camera to the tripod.  The camera guidebook. was found, but was of no help.  Friend Donna came to my rescue.  We read the camera guidebook together after I found my glasses.  Then, I said, “Let’s consult Google.”  Thanks to Google, and Donna, and me finally following the directions correctly, we got a couple of photos.  

This folks is why it takes me so long to get anything done.  I am trying to keep track of where I put things while also trying to keep up with technology.  No wonder I am get so little done.

Before the day was done, I took a photo of my dear Dove whom had helped me put this party together.  I guess you could say we were deconstructing the day when I took the photo.  This girl, one of my dearest friends, had her birthday the next day.  Of course, I could not help but remember that she is the one whom introduced my husband to me by having him invite me to her sixteenth birthday party.  We have a long and precious history and connection with each other.  She remains a woman who personifies youth, vitality, and friendship.  I am so grateful I have her in my life.  


Sunday, March 17

Friend Donna and I made plans for brunch so that we could get a bit more visiting done.  We brought our husbands along.  She wanted to tap into a memory that she hoped my husband would have of a car accident they both survived over fifty years ago.  She asked him for details.  He had no real memories of it.  She asked who was sitting on his lap when the car flipped and gave him a couple of names to see if he could remember.  In true Jim fashion, he said, “I don’t remember, but I hope it was ___(the cutest one with the best personality)_______.”  We laughed at that.  

After brunch, we went for a walk in Garden of the Gods.  Winter has been long, and it has been even longer since I had walked in one of my favorite places.  Jim reminded me that Sundays are crowed at the Garden of the Gods, but I insisted we go anyway.  It was crazy crowded with people, dogs off leash, and babies in strollers, and small children running and nearly tripping us.  I said, “This is not a nature walk.  This feels like the mall.”  Jim said, “No it doesn’t; the malls are dead.”


Just look at that blue sky!  Blue skies, red rocks, make magnificent combinations.  

My other favorite sight to behold is this old girl, Pikes Peak.  I love the view of her from Garden of the Gods.  Some call her America’s Mountain, but she is my mountain.  I grew up in her shadow and have felt that her arms have embraced me throughout my life.


Lessons Learned:

Beloved friends and places conjure up powerful memories that have an almost spiritual aspect to them. Somehow, when one is with those beloved friends, or in beloved places,  the memories made in youth and beyond meld into the memories being made in the present creating an alloy of memories with a transcendent quality.  

Monday, March 18

8:30 a.m., I report to the hospital for a 9:00 treadmill stress test.  I pass with flying colors.  I am grateful.  

Afterwards, I treat myself to breakfast at Wooglins, a favorite place of mine where I always get the very best quiche I have ever had.  They will be closing at some point in the near future and that makes me sad.  I love the quirkiness and down home feel of this place.  It is usually buzzing with college students, but I am there between the breakfast lunch rush and nearly have the place to myself.  I leisurely ate my breakfast, sipped my coffee, and read the paper.


Lessons Learned:  
  • It is reassuring to pass stress tests when one is in the eighth decade of life.  I feel stronger and more healthy after doing so well on the test.  The old ticker is working just like it should despite the arrhythmias I experience that sometimes make me worry that something isn’t working right. I am better at trusting the pacemaker to correct the rhythms of my heart.  Knowing that my exercised heart recovers quickly builds great confidence as I pursue walking and exercising as a more regular practice.
  • Things never stay the same.  The hospital where I had the test is built on the site where the hospital where I was born once stood.  Thankfully, the old one is gone, and we now have a state of the art hospital in its place.    
  • Progress happens. So sometimes one's favorite places, like Wooglins, must make room for progress as Colorado College expands its campus.
Tuesday, March 19

More doctor appointments.  One with a skin doctor, the other with the breast doctor.  Mammogram and ultra sound are scheduled because of problems I am having.  

Wednesday, March 20

Pilates at the YMCA at 9:00 in the morning means I have to get up and going earlier than usual.  This is a good thing.  I am doing Pilates on the reformer again.  I love Pilates because it helps me so much with my chronic pain in the sciatica, and in my shoulders.  Making a commitment to be there exercising each week by paying money for classes keeps me focused on making this a regular practice.  

I love the Y where I go because it was built when my children were young and we were charter members.  It always makes me feel like I am home when I am there.  On the way in, I say “hello” and exchange pleasantries with a friend whom I have known all my life.  He is probably at least eight years older than I.  His mother was my grandmother’s best friend.  Now, crippled and bent over from arthritis, he can no longer stand upright, but he is at the Y three for four times a week riding the bike. We usually meet as he comes in while I am leaving. He inspires me.

In the afternoon, I join my dear prayer partners for prayer.  We join our hearts together in prayer every two weeks.  I love these ladies.  We’ve been prayer partners for years now, and we’ve seen prayers answered in amazing and powerful ways.  We are changed by praying as we learn to trust God more and ourselves less.

Lessons Learned:
Exercise your body and your faith.  Both will become stronger when you exercise them.

Thursday, March 21

I attended Pilates at 10:00 at the Y so I could make up a session I missed last week because of the snow storm.  At 11:30, I had a massage.  I then wanted to just take a long nap for the rest of the day.  I didn’t though.  I rested.  Drank a cup of tea.  And then I got my chores done.

In the evening, my husband and I attended a workshop presented by a local ministry which we support called Mercy’s Gate to help us understand poverty in our community among our working poor.  It was informative and sobering.

Lessons Learned:

  • Self care can take place in different ways.  Exercise and massage are so important to me at this stage of life.  I am grateful that I am able to give myself the gift of both exercise and massage.  I am also grateful to know self care is not indulgent.  It is necessary to good physical, mental, and spiritual health.  It took me a lifetime to learn this.
  • The memory of living below the poverty line when I was a single mother is very vivid.  I hope to become more involved in helping others whom are working full-time jobs and yet are considered the “working poor.”

Friday, March 22

Jim was off work.  We had a slow morning.  Then we took a long, slow walk through the neighborhood.  It felt so good to walk together with the dog in the neighborhood.  Cloudy skies threatened rain, but it didn’t arrive until later in the day.  


In the afternoon, after our morning walk, I had a follow-up appointment with cardiology to get the test results I had already read in my patient portal.  I love seeing the PA.  She is always so sweet, and informative, and supportive.  She tells me to send in a home reading from my pacemaker so she can check my arrhythmias.  She wants to make sure that recent incidents aren’t showing new findings.  

While I was doctoring, Jim ran errands and picked up things at the store for me.  We then went to dinner at one of our favorite Mexican food places which is closing tomorrow night.  I am sad.  I love their cheese enchiladas with green chili.  I love the ambiance.  Where will I go now to get my Friday night Mexican food fix?  We’ve spent many Friday night date nights here.

Lessons Learned:
See Monday’s lesson.  Nothing stays the same.  Enjoy each day as it comes.  When old things or places go away, find new ones.  Life remains something to be explored.

***********
The week was filled with a lot of pain from my autoimmune condition that is of yet not fully diagnosed.  One doctor diagnoses fibromyalgia. Another says Inflammatory Bowel Disease.  Testing continues.  In the meantime, I carry on as best I can.  

***********
During the week, I also spent one evening reading Sarah Bessey’s Field Notes.  How does that woman do all she does in a month?  How does she read so many books and articles and keep up with her writing too?  She is my hero.  I read some of the articles that she referenced in her monthly field notes.  I felt myself realizing how much I missed my daughter Julie.  She would have loved discussing with me what I was reading from Sarah Bessey.  She would have got it.  She was one I always had the most interesting conversations with regarding reading, writing, thinking about life, and exploring new ideas.  She had such a bright mind.  She was so well read.  She could synthesize what she read and relate it to other things she was learning.  

**********

I am reading:
The Bible (I’m reading the Bible in a year by following a plan narrated by Daily Audio Bible.)  
Women Rowing North by Mary Pipher.
I Was Anastasia by Ariel Lawhon
A Million Little Ways by Emily P. Freeman

I finished reading:
Mrs. Osmond by John Banville.

Major Lessons Learned This Week:
Grief is ever present.

 The loss of a loved one creates a hole that is never filled in one’s heart.  

Despite that, I continue  to live day by day in the most healthy way I can, but sometimes I remember just how much I miss that dear sweet daughter I lost nearly nine years ago, and I weep.  

I hope she would be proud of me if I told her about my week because she would see that I am still living as well as I can.  

I guess that this Saturday summary was really written for her.  I think I can almost hear her say, “Good job, Mamacita.” 

And it was written for me too.  It was written to show myself that I am making progress in trying to live a more physically healthy lifestyle while working to maintain the health I that I currently have in the best way that I can. 

The great lesson of the week is: keep on keeping on.  Live life as well as you can every day that you can.

Thursday, February 28, 2019

Rare Disease Day 2019 ~ My Story

Today is Rare Disease Day.  After years of seeing multiple doctors for strange and confusing symptoms, I was diagnosed with a rare disease in 2013. I have an autoimmune disease called Cicatricial Alopecia.  It is a scarring alopecia which in my case has presented as Frontal Fibrosing Alopecia.  This disease brings both physical and emotional pain.  When hair dies, it hurts.  There is itching, burning, and a sense that the scalp is crawling.  Emotionally, it hurts to lose one’s hair because as women, our identity is often tied to our hair.  Some of you have read my story before.  Others have not.  Here is my 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.
May 2010
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.
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.
2013
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 Cicatricial Alopecia Research Foundation and from www. AlopeciaWorld.com.
In June of 2016, I attended the 7th International Patient-Doctor Conference sponsored by CARF 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.
June 2016
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.

2018
With helper hair
2018