my thoughts on open-ness

orange rose, originally uploaded by pilgrimgirl.

This morning I found several new bright yellow roses had opened in my garden. It was my intention to share them with you via a few pictures, but when I turned on my camera I learned that my battery pack was dead. Oops! So here’s a photo of an orange rose from a few weeks ago for you to enjoy.

Today I’m thinking about open-ness. It’s a topic that I’ve discussed fairly often on my blog. For example, one of my primary aims in blogging was to discuss my disability in an open and honest way. There’s a strong taboo in our culture about addressing physical differences, and it seemed that a blog was a great way to initiate the discourse.

Of course there are risks to being open. When I talk about my experience as an amputee, I’m vulnerable to cyber-stalking by folks who have acrotomophilia (a sexual fetish for amputee women). So at some point I had to decide that the benefits of blogging about my disability outweigh the risks of attracting the wrong crowd of visitors to my blog.

Similarly, my discussions about my spiritual journey have often touched on the taboo. I’ve been open about my frustrations with the LDS church and my experiences as a marginal member. My attraction to Quakerism has also been an significant thread in this journey and it’s been important for me to share that with you, even though my Mormon readers might find it disconcerting. I know that some of my extended family members follow my blog and are saddened to hear that I’m not currently active in the LDS church. But the reality of that is that many of our family members have left activity–it’s not just me. And I appreciate open dialogue with family members from both extremes of the faith spectrum. I love hearing about how your spiritual experiences have impacted your life choices. Truly. Now I am not going to tell anyone how to live their lives, but I would encourage those who have something to say to me about the church or any other aspect of my life to feel free to initiate that dialog. I will listen to and respect your thoughts, even if my beliefs are different than yours.

In this process of navigating my journey it’s been my aim to be as sincere and honest as possible. I learned long ago that speaking my truth makes me vulnerable to hurt*, but it also helps me to live authentically. I am not one person in a church setting and another person at home. I am not different online than I am in person. I am not ashamed of anything I believe nor of any of my actions.

*and yes, it does pain me sometimes when anonymous folks leave rude comments. I am not made of steel (although approximately 1/4 of my body is a carbon-fiber composite that’s pretty rugged stuff).

15 thoughts on “my thoughts on open-ness

  1. Alli Easley

    Jana, I think it's inspiring and noble that you've chosen to live this life. I understand how hard it is to be honest in who you are and how hard it is to have the fear of hurting others in your family, or the guilt that comes when those little moments of "what if…" come in. I have been reading you for a really long time and your personal progress is astounding. You are adored, loved and supported. Remember that, love! ♥

  2. Gary

    I don't much like writing about disability, at least when it is necessary to (over?)use the "I" point of view, but I suppose each human being owes Creation some sort of payback, which is generated from "down here" by trying to make the world a little more reasonable for the future-disabled.

  3. Alisa

    I am so glad that you share your journeys with us. I hope you won't mind a bit of a confession on my part: I used to find amputations a bit startling (not frightening, but perhaps *unexpected* is the best way for me to describe it–it just wasn't on my register). This was my own issue to overcome, made harder by the secrecy and silence our culture often has on the subject (and if every leg amputee wore pants all the time, how would we as a society ever overcome it?). Your openness about your experiences, your photos of you living your rich life, have been helpful for me, as I am much more sensitive to all different kinds of abilities now through knowing your experiences (I envy your start into surfing, and your canoeing is simply amazing).

    Your religious journey is no less meaningful in educating poeple through community. I hope to learn from your openness.

  4. Brooke

    I really really appreciate the things you share in your blogging, and that you share them with openness and honesty. I don't know when/if I will be able to emulate that authenticity, but I hope to someday. I just know I'm not ready now.

  5. jana

    It's interesting to me that you don't like much disability writing yet you wrote a book about your experiences. Was this to counter the other stuff that you've read out there?

    I tend to use the "I" when I discuss my disability experiences simply because I can't speak for all the disabled people or all amputees or even all female AK amps who lost their legs to cancer at age 13. The diversity of experience is very important, IMO, and helps prevent all people with disabilities from being lumped into one similar category.

  6. Janna

    I'm reading Ursula Le Guin's book, The Lathe of Heaven, and a comment about the main character reminds me of your thoughts today: "The infinite possibility, the unlimited, and unqualified wholeness of being of the uncommitted, the nonacting, the uncarved: the being who, being nothing but himself, is everything."

    It reminds me of the Buddhist tradition of letting go, or as Le Guin suggests, "uncommited." As we do so, we are then ourselves. We are not labeled, pegged, described, etc. We just are.

  7. John (with an h)

    confession: I still use "lame" as a generic pejorative sometimes.

    I'm a less than perfect friend.

  8. Mike N

    Jana, your openness is what has made your writing — whether here or in Sunstone, which is where I first 'met' you — speak to me. Your ideas are valuable, and your honesty lets them affect the world for the better.

    In that spirit, you might appreciate the tone of, and perhaps even add your name to it.

  9. Melissa

    Good for you Jana! I am always open (sometimes I wonder if too much) in person but I am still in fear of not knowing who is reading my blog and therefore have refrained from being totally open there. It's more of a scrapbook than a diary or public forum.
    Also, thanks to John for the reminder. I can't say I've used the term often (not since the 80's anyway) but I probably have on occasion and didn't even realize it. And yet, it always raises the hair on my neck when I hear people use "retarded". I wonder if we will ever leave that word behind in our history.

  10. Lynda

    Good Afternoon Jana!

    Acrotomophilia – Holey-Mackrell – that's the first I've heard of that.

    I would really like to know how you like your new leg. What you like about it and what not so much, if anything. If you've already written about it I've missed it, and I'm sorry. (maybe you could point me in that direction?)

    I try to keep up daily, but sometimes fall behind. Love everything about your site.

  11. Maureen

    Living as my husband & I do in an area with a lot of combat veterans and military retirees, it's becoming less & less unusual to see amputees when we run errands on base. Your blog has given me a wonderful insight into the challenges of life as an amputee. With any luck at all, you've also helped the amputees we encounter by making me more sensitive to them and a little less likely to say the wrong thing. 😉

  12. Hellmut

    Your openness is probably the number one reason why so many people love you. Your openness allows us to recognize your humanity, which appeals to our best instincts.

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