Patti Edmon Altered Attic: National Invisible Chronic Illness Awareness Week

Wednesday, September 16, 2009

National Invisible Chronic Illness Awareness Week

Ordinarily I wouldn't dream of posting this page... I was at the lake with 12 crayons (acrylic:) and a sketchbook and I started working on a tree to practice my drawing skills. It started out as day and night and then I started thinking about the metaphor, the light opposing the dark, how the same tree can appear so different depending upon the light. And I started thinking about the way my days are. Everyone has bad days. Everyone gets sick. But for five years? I added flames beneath the darkened tree, the burning hopes, the potential that often remains just that, latent potential, smoke swirling, dispersing in the night air; the pain and frustration that, like the illness, are unseen in the absence of light.
Living with a chronic illness sometimes feels like a silent thief steals in and swipes so many hours and dreams, and options, leaving me with swollen aching joints and debilitating fatigue. So I got out a couple of pens and began to journal about my anger and frustration, also remembering to also acknowledge my gratitude for the light, the good days.
There are many silver linings - my ability to be so fully present, to listen with my ears and my heart, to reach out and to empathize. It has, in many ways, brought me closer to my children. My 13-year old son helped me at the grocery, he did all the carrying and drove the cart... but he also said that it scared him when I stopped mid-aisle to take a break. And it makes me so sad that it has this, and other, effects on my family. But, as I told him (again) I have an auto-immune type of arthritis with a few sides. It isn't terminal, I'm not going to die, or become paralyzed, unable to see or speak. So many suffer from such incredibly worse illnesses that I almost feel silly blogging about mine. Like it or not though, this illness does play a major role in my life.
This week happens to be National Invisible Chronic Illness Awareness week. I'd discovered this event last year on one of my favorite blogs, My Vintage Studio. I posted focusing mostly on the social and interpersonal aspects.
Since then I've exchanged blog comments and emails with dozens of others who create art in spite of, or to give meaning to myriad illnesses. National Chronic Illness Awareness Week was founded by a woman, Lisa Copen, who somehow manages to pull it off, with articles, guest bloggers, virtual seminars and a packed schedule of speakers on Blog Talk Radio who address valuable, vital issues. (for a schedule or more information, click on this link) all while battling her own illness. And being a mother.
Bloggers United had issued a call to post on Monday to help create awareness for invisible illnesses, which affect nearly half the population. I am a couple of days late, as usual. Monday I was having a really bad (sick) day. I tried to create a work of art that, like Karin's (
A View Beyond Words), would do it justice, but it wasn't happening. So I took Karin's advice and decided to post this page, which will probably never again see the light of day; what better way to demonstrate the challenges and impact of chronic illness. So, thanks to Lisa and all those who make every day lighter.

p.s. prayers for the family and friends of Patrick Swayze


Debrina said...

Dear Patti - I had no idea you suffered in this way. I'm glad you did this posting and it made me think real hard about a couple of things (yet another reason why I have become such an ardent fan of yours):

1) The first thing I thought of was the New Zealand artist,Jane Evans. Have you heard of her? Here's a link to her website: What brings her to mind? Your illness and your art. Jane suffers from debilitating rheumatoid arthritis, she is almost daily in constant pain...yet her art is incredible, considering her hands are gnarled and furled from the arthritis. Perhaps it is no co-incidence that the word "art" is in "arthritis"? You both still get the art out of the arthritis!

2) One of my student librarians suffers from muscular dystrophy. She is only 13 years old (same age as your son) and must take sleeping tablets at night just to get to sleep. The pain, otherwise, keeps her up all night.

3) I suffer from chronic depression and anxiety (an illness I've always tried to hide).

4) Life is to enjoy, not to endure...though at times it may seem that it's the other way round for chronic illness suffers. But, in spite of this, we make it our mission in life to enjoy.

5) Blessings upon you Patti and thanks for giving us another meaningful and beautiful posting. The artwork is gorgeous - I can't believe you used such simple mediums!

Karin Bartimole said...

You've written another beautiful post Patti, describing your experience and it's effects with acceptance, not self pity; with tenderness and truth. Your artwork reflects that same truth, and that's what makes it so powerful. Thank you for sharing your courage, honesty and strength.
xox Karin

Karin Bartimole said...

p.s. i love those fishies and play a little with them every visit - i just figured out I can feed them!!

Anonymous said...

This was a soul wrenching and marvelously beautiful post. I loved it.

My Vintage Studio said...

Hi Patti. I hope you are feeling better. Your post was amzaing. Thank you for sharing.

I have been sick for about 2 weeks with Lupus complications...but am feeling much better today. I did go out for a while even in the rain!

Hugs, Sharon

La Dolce Vita said...

oh Patti, sad that you are have had some tough days. I love your tree, it is so beautiful and I appreciate every post you write. thanks for your art and your words! xo cat

La Dolce Vita said...

saw your piece in the altered zine, just wonderful Patti! hope you are feeling better. xo cat

katie jane said...

Hi Patti, I have recently been diagnosed with an "acoustic neuroma" (benign brain tumor) that is situated on my auditory nerve causing me significant hearing loss. When I first heard the news I was devastated because once hearing is lost it can never be restored. I will have to have surgery to remove the tumor (which also scares the dickens out of me) but I realized that you don't have to hear to make art. It comes from your heart.
I thank you for this post and I hope your "good days" are many.

Anonymous said...

your tree is so beautiful and i'm so very glad that you've shared it with us, along with your story. i admire your ability to share something so personal and deep with us. you are such a strong and beautiful lady!

i know second hand how chronic fatigue can effect people as i used to help a friend who suffered seriously from pain and fatigue. you remain so positive despite it all and that in itself is so heartwarming and inspirational. i secretly suffer from extreme depression and anxiety, which is nothing in comparison, and sometimes the simple act of getting out of bed and feigning a smile while making lunches and sending the boys off is nearly unbearable.

you are such a beautiful soul, patti, and the more i learn of you the more i admire and adore you. thank you so very much for this post!

Anonymous said...

This is beautiful Patti and I'm so happy you posted about it!

Jasmine said...

I came here from Karin Balimore's blog. I love your picture. There is so much to your words. I hope you find peace and a way of coping with the pain.

I've been noticing Haiku for the first time recently. It has spread across the pages of many blogs. I am enjoying exploring it.

smokeysmom said...

Ah, the silent chronic illnesses...I suffer from severe Fibromyalgia as a result of two separate traumatic injuries to my neck and lower back. I take so many medications, I've lost count. I cannot sleep at night without my Trazodone...I take 100 mg. of Morphine three times a day just so I can move and function. I am considered "disabled" (and I have the car plaque to prove it! Ha!) So, I really do hear you, and feel your pain. I am now experiencing rheumatoid arthritis in my left hand and fingers - good thing I'm right handed, lol. My life has changed so much over the last 15 years. You mentioned planning and then missing out on events - me too. Through all of this my savior has been my art. I'm certainly no pro, but being able to create art that other people want to trade me for or buy has been a blessing and it's what keeps me going. I don't get frustrated or angry any more, even when I lose time...Fibromyalgia is what I have, it's not who I am:) Your art is incredible. You are an extraordinary woman. How can you expect anything ordinary to happen to you. (Louisa May Alcott). I'm following your blog now:)


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