Our Heroes

I was originally going to make this post about the fact that after twelves long years of trying I have still not completed the challenge of 2700 Faces of Ankylosing Spondylitis. 

But this is supposed to be a blog of gratitude, so I thought long and hard about what I wanted to be grateful for today. It was not difficult to realize what I should speak of today, and that is about the people who are no longer with us, that walked the journey of Ankylosing Spondylitis just as I do.

Some of these beautiful people could no longer continue and felt that suicide was their only choice. 

Some of these beautiful people are no longer with us due to Ankylosing Spondylitis complications, issues, accidents, or treatments although their death certificate will never reflect this.

Some of these beautiful people were just called home because it was their time.

They are us, each, and every one of us….

We are one in the same. 

My heart breaks as I add each of their names, to many to be connected to me, how many others are there we have no idea about.

I respect each one of these amazing people for believing in me enough to share their truths with a world who chooses not to see them. 

They fought so hard to help people learn and understand what this journey with Ankylosing Spondylitis is honestly like to live with.

I hope one I will be able to complete the challenge of 2700 Faces of AS, I owe it to them to continue to do so.

I hope they know how much I loved and respected them and how I try so hard to continue to speak our truth with the world.

I hope you will take the time to read each of their stories.

Today I am grateful to all these amazing human beings for helping me be able to create something beautiful out of something so devastating to all of us.

Thank you from the bottom of my heart and the depths of my soul, I pray that you are all at peace.

As I was including each of their names and links to their stories, it became very overwhelming for me, a lot of these wonderful people I had the pleasure on some small  scale being a part of their lives. Their stories are OUR stories, their pain is our pain, and I carry each of them and all my faces in my heart. One day it is my hope that the medical field will take Ankylosing Spondylitis serious, and work harder to find cures for all of us, or at least pick a name and stick with it.

Ankylosing Spondylitis may not be listed as the cause of their death but I assure you it played a role in affecting the quality of life.

There are no words to express my love, respect and gratitude to them or their loved ones for being a part of Faces of Ankylosing Spondylitis.

My heart's desire is that you are all now at peace.

Some of you walked before us.

Some of you walked beside us.

Some of you will walk behind us.

But your memory will

always be carried inside us.

Rest In Peace

May your journey be pain-free.

A.S. Face 1858: Leonard Trask

First person to ever be diagnosed 

with Ankylosing Spondylitis

A.S. Face 0500: Stuart

His suicide compelled me to speak about 

 the hard truths about Ankylosing Spondylitis

A.S. Face 0038: Sara Frankl

She gave me the courage to create 

something beautiful 

and 

a post shared about her

 is how I ended up coming up with 

the idea of Faces of Ankylosing Spondylitis

A.S. Face 0820: Holly Rygaard

A.S. Face 0405: Michael Tracy Smith

Challenged me to do 2700 

Faces of Ankylosing Spondylitis

A.S. Face 0014: Brian O’Neill

A.S. Face 0005 : Jackie Aitchison

A.S. Face 0021 : Jake Chegahno

A.S. Face 0100: John Goff

A.S. Face 0034 : Nicole Kalnicki

A.S. Face 1071: Rachel Tew

A.S. Face 0394: Chris Scott

A.S. Face 1500: Michael Friend

A.S. Face 1280: Denise Burns

A.S. Face 1368: Tanya Amstutz

A.S. Face 0025 : Jennifer Fiamengo-Negrón

A.S. Face 0506: Gail Chamberlain

A.S. Face 1204: Carmen Niesen

A.S. Face 2100: Tisa Elaine Dixon

A.S. Face 1493: Mitzi Pate

 

A.S. Face 1460: Josilyne Kreisler

A.S. Face 0102: June Weatherhead

A.S. Face 1542: Darren McPhee

A.S. Face 1620: Karlie Edwards

A.S. Face 1515: Shawna Underwood

A.S. Face 0942: Annie

A.S. Face 1135: Belle

A.S. Face 2197: Johnny

A.S. Face 0598: Kimberly Kundinger

A.S. Face 0688: Holly Joiner Weatherbee

A.S. Face 0630: Kristi Shpur

A.S. Face 1366: Thad

A.S. Face 2178: Fred

A.S. Face 1728: Carl F. Miller

A.S. Face 1013: David Perry

A.S. Face 1707: John Allan Hill

A.S. Face 2215: John Potter

A.S. Face 1754: Kevin Coleman

A.S. Face 0783: Rodel Ciobanu

A.S. Face 1487: Bradley “Jay” Ford

A.S. Face 0703: Dana R. Spencer

A.S. Face 0195: Patricia White Lisewski

A.S. Face 2074: Sherry Webb Nicosia

 A.S. Face 1016: Don Milde

A.S. Face 2073: Charles Webb

A.S. Face 1490: Araxi Samuelian

A.S. Face 0621: Laura Groscost Potts

A.S. Face 1331: Nicholas Demetrius Hantzis

A.S. Face 0416: Viktor Romet

A.S. Face 0417: Enn Romet

One Face Closer

It was a very unproductive day today, I spent most of the time wondering where the contractors were, they were supposed to be her around noon, but the day would end with no communication with them whatsoever.

So, I did a little reading, a little catching up on chores and then I decided to check my email and I found one that in the subject line said Faces of AS.

Today I am grateful that I am one face closer to my goal.

Ten Long Years

This morning as I was looking at my anniversary calendar, I was stunned to learn that it has been 10 years since Michael Smith challenged me to collect 2700 Faces of AS. Currently, we have 2,245 which means we only need 455 more Faces of AS.

There is also something I either forgotten or did not realize is that the anniversary of the challenge was made on the anniversary of Stuart committing suicide.

He was the reason that I created Faces of AS on October 8, 2011, I wanted a place that we could safely share our truth with the world.

Stuart was a young man that lived in England and suffered with Ankylosing Spondylitis and in the end felt suicide was his only option. He was kind, gentle and very intelligent and is thought of often.

I had the honor of speaking to his mother many years ago, I was hoping she would share his story with us, but some stories are meant to stay in a mother’s broken heart.

I hope one day that I will be able to complete the challenge that Michael gave me, I have honestly lost hope, but I gave it my best.

Today I am grateful to all the brave people who helped me with Faces of Ankylosing Spondylitis.

Rest In Peace Stuart, and Michael, I hope you know you are still loved and remembered. I hope you are together supporting one another.

Past Meets Future

My sweet friend Jenna did an Apple A Day for Ankylosing Spondylitis, the one she created for September 11, 2001, was so beautiful and touching, and I must share it with you! Today is not only marks a tragic day of loss for the country, but also for our family as well.

Angie my grandchildren’s aunt died on this day in 2021, and their sweet little Tanner passed away in 2022.

Angie yesterday at Hunter’s party I got to see Destiny, you would be so proud of the sweet child she is becoming, she seems so ground up in many ways. Christy and I reflected on the inner struggle she must be going through losing her mother, but she is surrounded by those who love her to help her through.

Life is so cruel, I enjoyed teasing her about her lemonade stand and her uncle Bubba, I hope you are at peace knowing she will never be without love and support.

Little Miss Tanner, I miss you running to the door, tail wagging already to greet me with all your love and kisses, you are missed so much little girl.

I have been going through my home, rehoming things I no longer need and came across a little pink journal, and immediately I was taken back to the day that I had bought it for Taylor. I was shocked!

I took it over to the kid’s house and to say she was shocked was an understatement! She was so excited, and Christy was as shocked as I was. She journals and is addicted to notebooks like I am. It was a big hit.

A little later when she opened it, she found a note she had written, saying This is from the past Taylor to the future Taylor, the note was dated October 20, 2015.

Today I am so grateful for little pink journals and handwritten notes and sweet little girls who grow up into amazing human beings.

Fate

I am working on keeping up with “My Garden of Gratitude” and taking posts out of draft a few at a time. I am heartbroken that I did not continue with this, but I am being compassionate with myself to realize that I did the best that I could during those times.  I found a post in draft from the year 2015 and read the date repeatedly. I stared at it in shock unsure how long to be honest. So unsure how to feel about this discovery.

I checked and rechecked the dates and yes, they are correct.

I called Jenna and asked her if she remembered the date we met, and she said let me check and make sure, then she proceeds to tell me 

October 22 – 25, 2015. I said do you realize, and she whispered yes.

It took my breath away and my world began to spin, and then I knew for sure we were meant to be friends. Fate.

I remember seeing her for the first time and knew in my soul, that she was one of the missing pieces in my life, she has brought joy and color to my black and white world, she has opened my eyes to see the pieces of me that I had buried so long ago and bring them back to life for people to see. She has listened to my triumphs, fears, heartbreak, and joys over the past decade. She has taught me so many things over the years.

No matter how wonderful or horribly of a person I have been, she has been there, no matter what secrets of heartache I have shared with her she has been there and continues to do so.

I am free to be me, no restraints, or holding back with her and know that it is unconditional.

Unconditional love.

She helped my family so much when we lost Austin, she was the one to find the man who would later design the most beautiful and perfect casket for Our Number One Fan. 

She would design an apple that represented me as I wanted to be seen by myself without even knowing. She has encouraged me to continue during the times I wanted to stop living, with pure love and no judgment. She would simply remind me that I was needed and loved.

How did I not make the connection till today?

October 22, 2015, I met Jenna in person for the first time.

October 22, 2019, we lost our precious Austin.

I do not believe in coincidences in life, but I do believe in fate. So from this day forward on October 22, I will cry tears of heartache, sorrow, joy and hope.

Today I am grateful for the connection of this date, that is both one of the best days of my life and one of worse days of my life. And I am grateful that God sent her into my life to help me during the most horrible days of my life.

2015

2019

Two Years

It has been two years since you passed away, ever once in awhile I will text Kevin with a heart. I miss you girl!

I hope heaven is as beautiful and sweet as you were.

Till we see each other again, all my love.

Today I am grateful to have been blessed enough to know you and call you my friend. Rest in peace sweet Holly

Rest In Peace Rachel

I received news today that Rachel died, and I have no words. I cannot process this; she has two young daughters who still need her. 

She was our Faces of AS #1071 Sighs… 

The only thing that helps me with this is now she is with Autumn. I try to imagine how big her smile is when Autumn comes running to greet her at Heaven’s Gate. Healthy, happy, and verbal. I can see Rachel weeping with joy at hearing Autumn saying Mommy, you are here! I have missed you!

I hope there is a heaven where nothing, but joy and happiness fills the days.

Today I am grateful that I had the pleasure of calling her my friend.

Rest in Peace sweet girl

Save a place for me!

Heartbroken

I received a text around 1 pm from Kevin, it simply said my mom passed away this morning. I was so shocked and heartbroken for this sweet man, his wife Holly passed away in July 2021, she was a wonderful friend and one of our Faces of Ankylosing Spondylitis. We spoke for a little while and I was so stunned when he shared with me how she died. I know there is nothing I can do or say that will ease his pain, but I wish I could more than anything.

Today I am grateful he has his faith to carry him through this, may she rest in peace. I am sure Holly, and her family are grateful to see her.

Rest in peace Carol.

Email

I received an email today from someone I have never met or known of. It was a letter expressing his gratitude for the Faces of AS website. He said he has been following it for years but was not at this time ready to submit his story. He just wanted me to know that he was grateful to know he is not alone in his battle against Ankylosing Spondylitis.

I wrote back and told him how much his email touched me and to thank him for reaching out to me. I hope one day I will add him to the site.

Today I am grateful for emails that reach deep in your soul and heal a part of you that you did not realize needed healing.

Rest In Peace, Hedy

So much sadness, so much heartache. My heart is broken to have to say goodbye to one of the sweetest people I have been ever blessed to not only know but call my friend. Hedy our Faces of AS 008, died today. I can not begin to tell you how wonderful and kind this lady was to me, I have “known” her since 2010. She always encouraged me when I could not find the courage I needed, she would send me emails filled with such love and compassion. I still remember her heartfelt words when Austin died.  

I must find peace that she is now with her beloved Walter, and I hope she is with Austin too, how wonderful would that be.

Today I am incredibly grateful to have been blessed with such a sweet person in my life…

Rest in Peace Hedy, I love you

Deserves

 

This is Peter, he actually has the canine version of Ankylosing Spondylitis. Crazy right? He has had such a horrible life. He came to us, starving, flea infested and abused. He has had to under go heartworm treatment twice, he survived being trapped in an office with three feet of flood water, five knee surgeries (same knee), a spot on his chest that would not go away no matter what we did, only to discover it was cancer, and then he had MRSA. He would be under serious treatments for over 6 years straight non stop. If you want to know what a warrior, sufferer, supporter and SURVIVOR looks like, well here it is!

I take him everywhere I go, and he just soaks up the experience. He is teaching me about gratitude and enjoying the moment.

Today I am so grateful that this sweet little boy is healthy enough to enjoy the car rides he so deserves and I get to be the one to take him.

AS Survivor

 

This is my hope with the Faces of AS and this blog. 

Today I am grateful to those who shared their stories and experiences because if not for those brave souls I would not be an AS SURVIVOR.

This Message Is To You

This message is to you, yes you.... you know who you are. What if you stopped and paused for a moment, what if you reached out to someone, what if you decided to give tomorrow a chance? What if? What if the struggle was worth the end result? What if the best was yet to come? What if? I can't tell you how many times people tell me you have no idea, but what if I did? What if I told you that I did, what if I told you I had written that letter to my family? What if I told you I was right where you are not once but twice? What if? What if I told you I didn't have some epiphany or change of heart? What if? What if I told you I was angry and bitter because I was here? What if? What if I told you I had gotten to such a darkness that the darkness was the only light I had? What if? This year (2017) especially has been the most rewarding of my life, such a personal triumph that many can't begin to understand but you do. What if I told you I was blessed with doing an interview with Dan Reynolds for This AS Life, live. What if I told you that I was blessed to go to Las Vegas with my daughter? What if I told you I got the honor of being on the Spondylitis Plus Cover with Dan Reynolds? What if I told you I was blessed to get to go to California to meet all the wonderful people at the SAA and Erica! What if I told you I was given an award for Outstanding Volunteer? What if I told you there was a big beautiful fancy dinner in our honor? What if I told you that in 1987 I tried to commit suicide? What if I told you that last night my family and I had the honor of meeting The Imagine Dragons? What if I told you I tried again to commit suicide in 2013? What if I told you I contemplated doing so this year? What if I told you that it is hard to be open and honest with all of you? What if I told you the reason I am is YOU? What if the best is yet to come? What if you reached out to someone who knows what you are going through or has been there? What if? This year during all of these amazing times of my life all I could think of was WHAT IF? Please remember THIS what if and be present today in your life, we are not all guaranteed tomorrow but what if we were?

I used to want my legacy to be the Faces of AS or my desire to be kind to others but what if my legacy was to be this… That you never truly know what tomorrow will bring and what you would have missed if you were not here.

I hope you choose to pause and stop and reflect, then rest, breathe and try again.

Life is meant to be lived and living is one day at a time…

Please remember when you are in that darkness in your life that I shared with you my story of darkness and what I would have missed if I had succeeded, I mean really what if I had!

Stay strong…

I am grateful for the courage it takes to speak out openly to others and the courage it takes to reach out to someone...

My AS Life

It was six years ago today, that I was given the opportunity of a lifetime. It was the day I met the wonderful crew of ThisASLife, Dan and Mac Reynolds. I was there to be interviewed by Dan about my AS Life. I will be forever grateful for this amazing gift that was given to me. I want to thank you all so much for your support and encouragement over the years. Without all of you this day would not have been possible. 

Today I am not only grateful for this chance of a lifetime, but more importantly for the blessing of lifelong friends. I am grateful for everyone who believed in me. I grateful that I was blessed enough to do this with my daughter. I am grateful to have been a part of something so incredible that made everything I had dealt with concerning AS mean something, something important.

My Interview with Dan Reynolds For This AS Live Life!

A Sister's Tribute

Yesterday evening I received a text from Victoria. She wanted to share the video she made in memory of her brother Michael and in honor of the forty-third anniversary of the Spondylitis Association of America. Her timing was erie and amazing. I had just finished writing something that was very difficult for me. I had heard Michael speak of her for years! But had no clue who she was until his death. Isn't it crazy how life works.

A Sister's Tribute! 

Today I am so grateful for this wonderful human being named Victoria!

A Sign From Spondyville (Heaven)

Earlier today I had a wonderful conversation with Victoria, we spoke about so many different subjects. I told her that I struggle with so many things that go on behind the scenes and the difficulties it causes for me. She was very empathic and told me that it was okay to just do me, and that when the time was or if the time was ever right I would know.

We reminisced about Michael and all the wonderful memories we had. I told her my idea about kidnapping the Spondy Trio and how appalled Michael was and fascinated too! I shared with her that I was struggling with when I wanted to do my Ankylosing Spondylitis Awareness Challenge. Michael had originally started it in the month of April and I wanted to continue that, but the SAA had changed it a few years back to May due to many reasons. 

We laughed, we cried, we reminisced, and we both felt so much better afterwards.

A few hours later she texted me with a link to something I had written in April 2019. It was the exact conversation we just had with each other. It was crazy. While reading it I felt so many emotions and began crying. I called her immediately and she told me it just popped up while she was searching for something else.

During my lifetime I have always looked for signs from heaven, the universe, or loved ones who are no longer here. It always seems to helps me deal with difficult situations.

Today I am grateful for signs from Spondyville which I am sure is right smack dab in the middle of heaven.

Great Minds Think Alike

This morning I received a text from Victoria, who is Michael Smith’s sister. I could not believe eyes when I read it. She knows I am working on adding Michael’s Work to this blog and she said she would write something about him. I found my favorite picture of Michael so I could add it to each of the post I share about him.

At 11:43 AM I received this picture…

 

For your blog! I love this picture of Michael!

My response was as follows, oh my god girl that is my favorite picture too! I have it saved so I can use it to add to his post!

I took a picture of my computer immediately.

Today I am grateful for minds that think alike!

Saying Goodbye

Today we must say goodbye to Shawna, she was Faces of AS 1515. I hope that she is finally able to be at peace, you fought a hard battle sweetheart.

Today I am grateful to have been blessed enough to know her.

Rest In Peace Justin

Today we say goodbye to Jesse Justin who was Faces of AS0275.  They were someone who was brave enough to live their authentic life and someone I cared for deeply and respected.

Rest in peace Justin.

Today I am grateful that you were a part of my life.

One Day

On October 8, 2011, I started the Faces of Ankylosing Spondylitis and as of today I have posted Face of AS 2245 which means I am only 455 faces away from my goal of 2700, in October it will be twelve years I have been working on this. That is the same amount of time children go to school, from first grade to graduation. I never in my wildest dreams thought it would take so long to do this. I mean I am involved with at least four support groups of over five thousand in them each. Sometimes I wish I had never started this project. But…

Today I am grateful I did and will continue to hope I will complete this goal one day.