My heart on my sleeve: it lingers

My gratitude practice and the Gratitude Tarot it created, were birthed, in part, by pain that lingers. This is a little glimpse of it.

Macro photo of purple fall crocus flowers. My Gratitude Tarot was birthed, in part, by pain that lingers. This is a little glimpse of it.

I have an undiagnosed condition. (yes we tried to diagnose it, both conventionally and alternatively with no luck)

This condition has the sort of symptoms you don’t want to hear about, so I rarely talk about it.

It has prevented me from doing some activities that I truly loved. Kickboxing. Belly dancing. Certain favourite yoga moves. Even the things I can still do, I must do with utmost care to not overdo it.

During these activities my body does not warn me I’m overdoing it. There is no gentle nudge, no tweak of pain, no sudden onset of one symptom or another, but the pain after undoes all the pleasure, all the benefit of them.

Actually, this condition would make me hard to employ. No doctor has told me I can’t work, but I fully understand the difficulty it would be. There’s been many a day that I’ve been so grateful to not have to go to an office. That I can stay here in my space, work quietly at my computer as my symptoms allow. Sometimes this is for long stretches, sometimes I need many breaks.

This condition, undiagnosed as it is, has no name. I can’t tell you have x or y and so you can form no opinion of how this feels for me. Thankfully, you also can not tell me all the stories my friends with autoimmune disorders hear: how a cousin fixed themselves by drinking black cherry juice, how a friend had that and it went away when they stopped eating donuts, how I can manifest myself to wellness and if I haven’t yet, I’m not doing it right.

I don’t often talk about this aspect of my life. Not online, not in person. What purpose would it serve? And, indeed, what purpose does it serve for me to write this now? Except that it wants to be written. Perhaps in the writing some symptoms will ease. It’s worth trying!

Last week I had a cold. It was obvious to anyone who heard my rough and nasally voice, by the mountain of used facial tissues, the cough that would sneak out with almost every movement and almost every sentence.

In some ways it was a relief to have a cold. You could see it. You could tell that my body had been exposed to a cold virus, that I was experiencing the symptoms of my body trying to remove the virus, and that it would likely last a few more days. I spoke of the cold freely on Facebook, to my friends, on the phone. Not so much seeking sympathy as explaining that my energy was lower, my attention more fractured that usual, that I may have to decline a social engagement or reschedule a meeting.

It is easy for you to understand all of this. You’ve had colds before. You know exactly what they can be like.

I know it is not easy for you to understand the condition I live with. It’s not easy for me to understand, either! Food changes have helped, but not eliminated symptoms. Work changes have also helped but not cured anything. Removing activities that I once loved has made daily life easier. But before this beset me I already ate healthy food, already nurtured my creativity, already listened to my body.

It’s easy to ask why me? And I have and do, sometimes.

More often I just ask why? I want to understand what this is meant to teach me. I want to know why my body seems to plot against me. I want to realize the big lesson so I can watch all the symptoms melt away under my deep learning.

Even with a brilliant a-ha, I don’t expect that the symptoms will disappear. This has been too long and complicated a road for that.

And so, instead, I search for small meanings, for revelations and realizations that give me clues to my life, to this big picture.

And I start with delight in the tiniest things. Sunlight filtered through leaves, the sound of birds outside my window, an unexpected kindness, the tantalizing first bite of a delicious meal, a beautiful picture. In each of these I find solace, I find the Infinite, I find Gratitude, which some people call God. And with practice this becomes easier and easier.

This makes life so pleasant, yet it does not make the condition go away.

I have grown because of this. I know now my heart sees the pain of others, that it breaks open when I see their pain. Compassion is a bridge built on pain and love in equal parts. I cry freely when tears come to me. I hug when I feel the urge. I send butterflies to someone virtually every day.

I am buoyed by the butterflies, just as others are, yet it does not make the symptoms stop.

Recently, in considering the predicament of this condition, the decisions I’ve had to make, another idea has formed. Just because I can do something does not mean it is a good idea to do it. In reality, all of us can do anything we want. And, in reality, we all have limits of some kind. Some are obvious, some are hidden, but the limits are there because we each reside in a body. A human body.

This new puzzle challenges me to consider it more deeply.

Does it apply only to the physical? I can ride my bike 100km, but I would take days to recover from it. I can kick and punch the bag very hard, but I’ll be flattened under a heating pad for hours if I do. But is this also true of databases and spreadsheets? Of doing the layout of my own first book? Of doing the bookkeeping for our businesses?

I don’t yet know the answer to this, and I haven’t yet seen evidence that these other activities hurt me. I’m watching now, hoping for clarity.

And, you guessed it: Even though there is some solace in having a “reason”, the symptoms are still here.

Perhaps it’s because I don’t talk about it often that I needed to write this. Perhaps I just needed you to know. And maybe, since she’s not going anywhere anytime soon, I’ll give her a name. Yes, I’ll do that. Perhaps Gretchen.

And if I mention Gretchen, you know that the symptoms are making a comeback. Yes, they will pass, but they are demanding my attention at that moment. I hope she doesn’t keep me from too many of the things I love.

Is there something you don’t talk about much? Would it help for you to share it here?

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10 Responses to My heart on my sleeve: it lingers

  1. Ellie Di October 15, 2012 at 1:51 pm #

    Girl. Friend. I so hear you. Having an invisible, unnamed condition makes life that much more challenging and interesting. And the story of it is begging to get out. I have the same conundrum. If you ever want to talk about how to talk about it, hit me up. Until then, you do your thing, you wonderful person. <3

    • Teresa October 15, 2012 at 3:01 pm #

      Thank you Ellie! I know you are going through these things, too. I’m so much better than I was a few years ago that I am sometimes surprised by Gretchen’s sudden appearances. She definitely has changed my life, and that’s not all bad.

      Sending you many hugs and butterflies, my friend. Be well,

  2. Karen B October 15, 2012 at 3:15 pm #

    Like a large number of people, I have a condition – it’s invisible and can be debilitating. It prevents me from holding down a job, yet others can’t see why. It comes and goes – some days are worse than others and some days are better. Sometimes I feel like a fraud and somedays I struggle to get out of bed. It’s depression. If you’ve never had it you won’t understand. And so we try to keep going – look for the small things to be grateful for – and find inspiration in others who also are brave enough to share their stories of illness so that we don’t feel alone. Thank you Teresa x

    • Teresa October 15, 2012 at 3:26 pm #

      Yes, Karen, there are many of us. We make it through with our small practices – yes, I find Gratitude to be so very soothing! – and through each other. Soul-family, community, the reminder that alone is a myth. Thank you for being here with us. Thank you for sharing your story, too.

      Hugs and butterflies,

  3. Tanya Geisler October 16, 2012 at 3:37 am #

    Delighting in the tiniest things always seems to me like a sound strategy…in all that we face. And you are masterful in that realm.

    There are fears and worries and aspects of my like that are Gretchen-esque in behaviour (showing up at unwelcome times, or when I thought we were “passed that”). But nothing like what you endure.

    Sending you warmth, love, comfort and mad, mad respect,

    • Teresa October 16, 2012 at 8:22 am #

      Tanya, thank you! So grateful for you and your love in my life! We all have a little Gretchen in our lives – I’m still trying to figure out how to acknowledge her without letting her “win” (more work needed on this language, for sure!)

      Hugs and butterflies and joyous beautiful success to you on your beautiful new launch!

  4. 1little Light October 16, 2012 at 7:41 am #

    I tried to send you a butterfly.
    Maybe my heart knew what my brain did not.
    It obviously never made it there, but that doesn’t mean my love and thoughts and gratitude do not flow to you
    every single day.

    • Teresa October 16, 2012 at 8:23 am #

      O, beautiful, you DID send me a butterfly, and I have been enjoying it with my tea every single possible moment since I received it! (I messaged you on Twitter to thank you….did you see that?) You love and thoughts and gratitude flow to me every day – I feel them and they are beautifully sweet. Thank you!

      Hugs and butterflies,

      • 1little Light October 16, 2012 at 9:41 am #

        So good to know!
        No, I did not get anything from you on twitter…
        Just went and double checked…
        I thought that it had been lost in ether..
        So glad that it made it, and THANK YOU! for all the love and Gratitude!

        • Teresa October 16, 2012 at 9:45 am #

          Oh, snap! So Twitter is losing DM’s now? Goodness! I think I might have an email address for you somewhere…
          So glad to have your heart with me every day! Thank you!!

          Hugs and butterflies,

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