International group post: Love is portable


The point is this: love is portable. Real, solid love can handle time and distance.

I’ve been saying that for a very long time. I didn’t know, however, that even the formation of love can cover distance. It can cross the globe.

I grew up overseas. Since there wasn’t always a credible, accredited school where we lived, this meant we kids were sometimes away from the family for months at a time. I learned to handle it in a curious way …

I realized, in a deeply personal way, that the same sky covered us all, and the same world held us. If I could see the stars, I felt very strongly that my brothers and parents could see those same stars — if not today because of clouds, then perhaps tomorrow or yesterday — and knowing that we could look at the same stars was a powerful comfort to me.

Beautiful colored view of a star-forming region
Star-forming region in the Magellanic Cloud. Photo from NASA’s Hubble project.

It doesn’t have to make sense, if it works.

As an adult, I got a dreadful disease that requires more research to manage and understand than one person can do in a lifetime. It took me weeks in the Stanford medical library to realize I had something truly rare. Once I was finally diagnosed, it took me months to begin to understand the complexities of what I have.

I also got the internet and a membership in an online pain group … and eventually a blog and social media accounts.

And suddenly, I wasn’t alone.

That first group’s administrator got me through the second major test of survival. (This disease has caused quite a few.) She’s on the other side of the country.

As I’d reached out to her in desperate need, I found someone else reaching out to me in a similar fashion, and she’s a nearly equivalent distance North, in another country.

Then I met the Swede, the Briton, the Belgian, the Icelandic… then Australians, New Zealanders, Chinese, Japanese, more Britons, French, French-Canadian, Dutch, Danish, Mexican, Argentine, and on and on and on. Any country with a health system sophisticated enough to think of, and look for, rare diseases, seems to have people with CRPS.

Let’s think about that for a moment.

OK, that’s long enough. It’s depressing.

The truly international distribution of the disease is almost as penetrating as the international distribution of the internet.
The Earth's winds. Not a bad metaphor. By NASA's Goddard center.
I could go on about the obvious benefits — having someone to chat with at almost any hour is a good one; having such a wealth of perspectives on health, medical delivery, and self-care is another; being able to discuss findings in one country that aren’t yet known in another is a hottie; and, of course, there’s always someone worse off to make me feel humbly grateful for my little all; but these are pretty obvious and probably stated better elsewhere. I’m not doing too well above the neck this week and I have to keep it simple.

This disease has stripped me of many of my friends, my careers (both of them: nursing and software), almost all of my hobbies, most of my strength and stamina, and pretty much every illusion about life and humans that I ever had.

Life can be bleak when it’s this lean. There has to be more to live for than usual, not less, when every day is another stab at the same tedious, repetitious, miserable slog that would make me say to Sysiphus, “Quit your whining, kiddo. Trust me, you’ve got it easy.”
Sysiphus looking miserable as he pushes a rock up hill... with poor body mechanics.
But every connection that I make with my CRPS cohorts makes me stronger. And — how do I say this without sounding mushy or daft — these aren’t superficial connections. I would gladly stop a bullet for my friends, not that that’s likely to happen … but then, it’s easy to find something worth dying for. The trick is finding what, or who, is worth living for.

Any hour of day or night, I can log on and find a soul-sibling somewhere in this world, beyond first-languages and politics, beyond gender and race, beyond anything that might have mattered once.

I don’t have time to ask permission to use names before posting, so my own ethics force me to skip personalization, but the fact is, ladies and gentlemen, you light up my world.
Earth seen from the moon. Earth is gibbous.

When I get discouraged or disgruntled about this tedious, repetitious, miserable slog, and I can’t remember the self-care routines that can help me with it, instead I remember my friends: this one’s Celtic ferocity; that one’s wry wit; the painful eloquence of one; the utter gentle kindness of another; the ghastly spelling over the radiant sweetness of yet another; the shining fragile beauty and boundless courage of, well, all of them …

Every piece I write has to meet multiple tests of integrity before it gets posted: factually accurate, logically defensible, ethically sound, emotionally true (but as the rambling nature of this one indicates, brilliance is NOT a criterion, or I’d be posting a whole lot less.)

That list of criteria has a lot to do with who I think of when I write. It’s this absolutely global, polyglot, brilliant, loving, well and widely informed set of people. Each one of us has our strengths and our weak points, but collectively, we are astounding. Utterly astounding.

I have to live up to that, and be translatable … and it’s an honor and a challenge, every time.

CRPS has taken much, but the internet, mother wit, and a quorum of luck has given me infinitely more. I’m a better being and a better writer because I share the world with people like this … and I’m aware enough to know it.

I have plenty to live for. Screw the slog. Sysiphus, move over and I’ll show you how it’s done.
girl on a flat beach kicking a ball high

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9 Replies to “International group post: Love is portable”

  1. Hello Luv, what a wonderful refreshing blog post….yes some of it must be depressing because of the way this disease works…but what a well written piece of writing…Thank you for the honor of reading…all of these international blog posts have been written with heart and soul…how wonderful this experiment has been…love, suzanne/USA suzydukettes.wordpress.com

  2. Ah Isy! Your writing is always such a treat! And I think you and I were on the same wavelength on this one… all about the love, eh? And the kicking butt… Thanks for this glorious post. <3

  3. Aww love this so much Isy, you write beautifully and every word rings so true. Especially loved finding who to live for, gorgeous <3 I hope you're resting now, sending lots of love x x x

  4. Did everyone’s posts get linked? Almost. Here’s the whole gang — this month 🙂

    List of this informal group of International CRPS Bloggers:

    1) Sylvie in Belgium: Blog SDRC International: des amis merveilleux et des patients experts / CRPS international blog post: wonderful friends and expert patients…
    http://sylvieghyselscrpsdrc.wordpress.com/2013/11/22/blog-sdrc-international-des-amis-merveilleux-et-des-patients-experts-crps-international-blog-post-wonderful-friends-and-experts-patients/

    2) Elle in the UK: An informal International network of CRPS patients
    http://elleandtheautognome.wordpress.com/2013/11/22/an-informal-international-network-of-crps-patients/

    3) Christa in the USA: Support of International Community: Why Do We Need It?
    http://www.rsdcrpsdoesntownme.com/articles/support-of-international-community-why-do-we-need-it-

    4) Isy in the USA: International group post: Love is portable
    Right here! 🙂

    5) Suzy in the USA: “In ASL, a Performance for NOVEMBER /RSD AWARENESS MONTH”….MUSIC is UNIVERSAL….emotions have no boundries!!
    http://suzydukettes.wordpress.com/2013/11/22/dancing-through-the-fire-youre-gonna-hear-me-roar/

    6) Lili in Canada: Love Knows No Bounds
    http://www.tamingthebeast.ca/2013-11-22/Love+Knows+No+Bounds/

    7) Jo in the UK: CRPS Awareness Month International Blog Post, A Community of Angels
    http://www.theprincessinthetower.org/ blog/2013/11/23/CRPS-Awareness-Month-International-Blog-Post-A-Community-of-Angels.aspx

    **watch Suzy’s ASL/performance of “Roar” video here: http://www.youtube.com/watch?v=0ePkDlLO2X4

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