Celebrate the Day


It would be tempting to say that when she passed on April 30th of 2012 at a mere 50 years old, the world lost a gifted artist, musician, teacher, servant, friend and Lupus advocate. As I look through my mother's daily gratitude journals, or 'Grace Notes,' I know better. Those who were blessed enough to know her could already tell you that her inappropriate happiness had the ability to change lives. That remarkable perspective is what we loved most about her, and now we each have the opportunity to embrace her inexplicable joy and share it to others.

One of Nancy Asbell's serene Florida landscape paintings
Nancy Asbell vowed to treat her painful disease as a blessing, using it to help others in their own everyday struggles. In July of 2008, she gave thanks in her journal for her "disfigured body from disease." and elaborated with "My body isn't pretty by the world's standards. In fact, it puts some people off, especially the sores and scars and bruises on my forearms. But I can use them in a positive way as an advocacy for Lupus awareness."


Here my mom sings the "Lupus Blues" she wrote to uplift her fellow lupies. She was an amazing music teacher.


Every morning that she could muster the strength, my mother took her powerchair to the garden to spend time alone with God and gave thanks for every little detail, be it the opportunity to show love to a grocery store bagger, or the gift of a lizard or butterfly greeting her through the hospital window. She even thanked God for the painful and disfiguring chronic disease of Lupus that ravaged her body because only by her own suffering could she truly understand the suffering of others. These 'Grace Notes' eventually became a constant stream of blog posts and Facebook updates. She reached out to strangers by sending them hand painted notecards and loving words, even when the very act of typing was excruciating and her gaping cellulitis wounds made it hard to compose a coherent thought. She never bragged about it, but she loved to volunteer at nursing homes, and even in poverty she donated ten percent of her profits to promote Lupus research and awareness.

Before lupus with her sister Michele, when they were young.
"Inappropriately happy" to have my help writing illustrated notecards to the hospital's nurses and housekeeping.

Nancy's great commission was to love each and every one of her neighbors, and she hoped that every struggle that she endured would help others to do the same. After she started taking massive amounts of steroids to fight her disease, she slowly became acclimated to her round swollen face and misshapen beanbag-like abdomen and still gave thanks. She then understood what it felt like to judged for her obesity and glared at in grocery stores, and she saw that hurtful insight as a gift. For this and other physical shortcomings she was judged by so many, yet she rarely judged anyone. It was as if she wore a 'fat suit,' except this was no costume. The papery thin skin that tenuously contained her bulging belly became painted with bruises, open wounds and stretch marks. Her arms and legs shifted between hues of ghastly gray, black and blue, and a grotesquely swollen furious red. After her intestine ruptured, she constantly dealt with failed ostomy appliances that couldn't keep up with her ballooning proportions.

Yet she marveled at her body's delicate dance between life and death. She asked the doctors so many questions about her health, but more often than not she asked out of fascination so that she could better educate others. When she was faced with foreclosure, she once blurted out "Now I can help others more because I understand the threat of homelessness!"

This rain lily will always bloom in my mother's memory, joyfully popping up when I least expect it.

This was the last thing that her friends read before her final hospitalization:

"THURSDAY'S GRACE NOTES.  PLEASE READ!  This is the most important Grace Notes that I have ever written.

After falling out of my wheel chair on Monday left with even more wounds and a damaged and wounded left eye I was given the facts of my diagnosis for the rest of my life due to my chronic wounds. I can not go to large populated events ever. My main heart breaker is church. In my powered wheel chair I can go to a large store, like Publix as long as I do not get close to many other people at the time. No body can visit me at my home if they are sick or have a family member that is sick.  I will be losing my house and, my car has been repossessed.  

But this is when the weird thing comes in.  I am still "inappropriately happy" and still look forward to the next fun day.  I still have my art , music, and marketing "job" and totally "work" from home.and I still have people (yes even you)  and Jesus will never ever leave my side.  The most "horrible" things that I go through the more I can help others because I have gone through them myself.
So I no longer celebrate the day I celebrate each minute. So let's go out there and let's rock our world!

I love you all.
Nancy"

Nancy just a week before she passed, after writing her last grace notes. Clearly she's celebrating the day.

A few days before she gracefully passed, I brought her some edible food and had her write up what would become her final grace notes so that I could share them with the world.

"Hello friends that I miss so much. I am in a rehab center getting stronger every day. It's nice to look out my window every day and it fills my mind with grace notes: Take time to stop and smell the jasmine, do it again. [grateful for] rain pounding in the night, blue and white china and bright yellow sunflowers make me want to paint... my picture of Steve and I at his wedding, finding peace in my own paintings, and my new quilt from Jennifer and her mom, and my 'go to' tote from Steven. It has everything I need, paperwork, and of course, art supplies."

Even her watercolor notecards were drenched in jubilation.

She wasn't without fear, anger and doubt, but her convictions remained strong. "I am angered about Lupus patients' suffering due to lack of friends, education and faith in themselves and God. I am aware that God may call me to return to poor health to minister to others - I would not strive towards it but would honor it if it is God's will. I want Lupus sufferers freed. I am willing to risk my neck for what I believe. I am authorized to work miracles."

When my mother wrote that she was authorized to work miracles, I think that this is what she meant: When she was in a nursing/rehabilitation center, she saw a drooling and vacant looking stroke victim and recalled the paralysis following her own brain stem stroke. She looked the woman square in the eyes and said "I know you are in there. I've been there. I understand" and then watched the emotion well up in her eyes. She was invisible and forgotten, hearing what may have been the only kind words spoken to her in years.

That brave and unabashed decision to reach out and love someone despite the fear of discomfort or rejection was a miracle that we can all perform in our own lives.  Miracles are not what you'd expect. They're more than temporary magic tricks, and raising the dead is a pretty weak feat compared to the universal power of compassion. Love is the one true miracle with any lasting power, and we're all capable of doing it. We can all be miracle workers.

As my mom always said, "celebrate the day!" To keep her spirit burning bright, I'll be sharing her attitude of gratitude and a bit of Lupus awareness at the new Celebrate the Day Faceblook page.

Other posts about Nancy:
My Mother is Living...
Falling Forward
The Garden is in the Bag
The World is Your Garden
What Our Mothers Taught Us About Gardening And Life (Guest post)

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18 comments:

  1. I am sorry for your loss but glad she lived to love life.

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  2. Beautiful tribute, Steve. Thank you for sharing.

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  3. So sorry for your loss. Thank you for sharing your world with us.

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  4. Steve, I am sorry that your beautiful mother is no longer physically with you. Her lovely artwork and joy of life will live on forever though, and I thank you for sharing the trials that she suffered, and the wonderful inspiration she was through it all. May you have peace knowing that she is with our loving Lord and no longer in pain.

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  5. Your mom is still such an inspiration, thank you for sharing her with us.
    My heart goes out to you.

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  6. Such a lovely tribute, thanks for sharing this. So sorry for your loss.

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  7. Steve ~ This was so lovely. I am sorry for the loss of your Mom. She still is an inspiration. Her life has touched mine. Thank you for sharing her life and Grace Notes they mean a lot.

    FlowerLady

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  8. *tears* This is a beautiful memorial and very inspiring to me. Not many people can be so "inappropriately" upbeat in the face of hardship, and willing to share this type of pain. Simply amazing....

    (I thank you too for sharing this...You never know who is in need of this type of encouragement in life.)

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  9. Thanks for your quick tribute to an incredible person and a wonderfully subtle force of life. And of course, I know you better now, too. You are in my thoughts and prayers.

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  10. Oh Steve, I've never met your mother but I love her. What a wonderful woman. How fortunate you are to have her for an inspiration. I look forward to reading more on your new facebook page. You are a wonderful son and your mother is smiling today that you are carrying on her torch. God bless you!

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  11. What a wonderful woman your mother was. All I can in tribute is "It's Another Beautiful Day"!

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  12. I listened to "Lupus Blues" all the way to the end and thought what a wonderful, brave, fun person who knew how to make the most of her situation. Life ain't fair but Nancy did her best to level the playing field. I know you miss her. It's wonderful that you have so much by which to remember her at her everyday best.

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  13. Steve, I just found out about your mother's passing - I have been away all week. Please know that your mother continues to inspire me and many, many others through her joyous and graceful spirit and the happiness that always shined from her eyes even in the toughest of times. You have my deepest sympathies. I am holding her spirit in my heart and will try to shine a bit more sunshine on my world, in her memory.

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  14. i'm so sorry.
    your post is so loving

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  15. Steve: Such a beautiful tribute to a wonderful woman! I am sorry for loss of your mom, but I am sure her inspirational attitude towards the life will always be with you.

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  16. Steve, so sorry for your loss but thank you for sharing your lovely and very inspirational mother with us. Knowing that "inappropriate happiness" is possible is an encouragement to me.

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  17. Steve, sorry for your loss but thankful that you shared your lovely and inspirational mother with us. Knowing that "inappropriate happiness" is possible is a great encouragement to me.

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