Day 171 – Share My Hearth

Art Apple - Day One Hundred Seventy One

“One may have a blazing hearth in one’s soul and yet no one ever come to sit by it. Passersby see only a wisp of smoke from the chimney and continue on the way.” – Vincent Van Gogh

This quote really touched me today. When you live with a chronic invisible illness, people just simply don’t know what to do about you so many choose to walk past – the wisp isn’t enough for them and they continue on their way.

I refuse to stop talking about the fact that I have a disease called Ankylosing Spondylitis. If that makes you uncomfortable well then, you are free to walk past, but if you do, you missed your chance to meet a new friend who has learned empathy in a deep way.

When you live with AS or a chronic illness, you know what it’s like to be shut out for being different and you know what it’s like to have people do whatever they can to not discuss the topic of your health. We are not our disease but for heaven sake – acknowledge this huge part of what we deal with on a daily basis by simply asking us how we’re doing. If you can find the way to do this for your friends or family who are dealing with illness – we promise to thank you and not bore you with the details.

I’m simply me. My hearth is blazing – come sit by me and don’t think for a second that I’m not worth the time :)

Until tomorrow.

Jenna

Day 171 was created in mixed media

*** Update *** New Guest Artist Apple by Debbie Boyd

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9 comments for “Day 171 – Share My Hearth

  1. March 20, 2011 at 10:28 pm

    I agree completely with what you said, a simple acknowledgement can go a long way! The friends I had years before getting fibromyalgia (middle and high school friends) like for my illness to stay invisible. Although I wish it were different, I let it be. I know they wish things were different too – that I hadn’t gotten fibromyalgia. With the friends I’ve made since my diagnosis I’m much more open, so I can feel comfortable sharing that part of my life with them too.

    • Jenna
      March 21, 2011 at 8:03 am

      Hi Felicia, I’ve experienced the friend drift too. I would like to think that I wouldn’t behave that way if rolls were reversed but I really cannot say for sure because before dealing with chronic illness I thought I was invincible – the life lessons are huge once you go through pain and fatigue and uncertainty. I think the “new” friends see your current self as no less wonderful and take you for who you are – limitations and all. Maybe we just start to attract different people? I’m so glad to have you in my group on newbie keepers! – Jenna

  2. Irwin Lim
    March 21, 2011 at 1:01 am

    I like this quote very much. I also admire your determination with creating these daily apples, as well as your talents.

    • Jenna
      March 21, 2011 at 8:05 am

      Hi Irwin,
      Thank you very much for your kind and supportive words. Some days it is difficult but I’m almost half way to my goal and there is now way I’m giving up now!
      Jenna

  3. March 21, 2011 at 6:11 am

    J: I LOVE text and image together… Yes, I have “lost friends” since Cancer, but I understand that it is a way to terminate so as to not have to go through some feared process of illness/death. Little do they know how much they miss.

    • Jenna
      March 21, 2011 at 8:09 am

      S: I guess I can understand why people walk past. It just makes me feel so sad that it happens. How are you doing? Any updates? You went through an amazing time with your cancer – a level of experience that I cannot imagine. I hope you are finding time to walk on the beach!
      Love,
      Jenna

      • March 24, 2011 at 4:52 am

        I’m finding time to WAIT to walk on beach; too cold still. Having lost alot of weight, the cold bites me worse than ever now. I am healing, recovering: dealing with ongoing leftover stomach/eating issues from months of feeding tube (and radiation treatment), deficient taste buds and salivary gland function. And both me and my life are all different so I am finding my way again. But I am here, and am grateful for that.
        Thanks for asking! That “hello, how are you” goes far for many dealing with chronic and not chronic issues…….
        S

  4. Charizza
    March 21, 2011 at 6:22 am

    Hi Jenna!

    It is true that a simple “hello” & “how are you?” means a lot especially us with chronic illness. It also makes a lot of difference to the people who took time to “care” for us for they get to have an idea of how & what we’re doing – a simple glimpse of our life.

    I found this quote & would just like to share with you…

    “It takes more courage to reveal insecurities than to hide them, more strength to relate to people than to dominate them, more ‘manhood’ to abide by thought-out principles rather than blind reflex. Toughness is in the soul and spirit, not in muscles and an immature mind.” — Alex Karras

    God bless always, friend! :)

    • Jenna
      March 21, 2011 at 8:13 am

      Charizza,
      I love the quote! A friend of mine – you can find her here in the comments – Felicia has a page on her blog of her favorite quotes and she updates it often. I may need to start that practice because I find ones that give me strength and hope and then I lose them. I would have to agree that our toughness is in our soul and spirit! How is the music coming along? Did you start lessons or singing classes? You mentioned you were going to follow your dream of music – what is that dream?
      Love,
      Jenna

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