What has to be done

Posted on August 15, 2008. Filed under: Acceptance, Belief, health, Mormon women | Tags: , , , , , , |

By Jana

Cross-posted from Pilgrimsteps.com. I also read an expanded version of this essay at the Sunstone Symposium last Friday, which you can watch via the youtube link at the end of this post.

I have a ritual that for my twice-daily wound dressings. It involves the expected hand-washing, opening of sterile wrappers, cleaning and laying out of tweezers and scissors, a dousing of the affected area with saline. Then I start to breathe.

In my yoga practice my teacher taught us to send energy through our bodies by imagining a furnace sitting at the base of our spine. With each breath in we stoke the fire of that engine, make it burn hotter and brighter, and as it enlarges and warmth shoots down our legs and arms–creating arcs of energy that spit out of our finger and toe tips. While I am doing a dressing change and I breathe this way I am less interested in shooting sparks out my fingers bit–rather, I imagine a pinwheel of fire in my belly that sends its light to my leg. The light warms and soothes the tissue, preparing for the moment when I have to grab the tip of the gauze that’s packed into the wound and pull. It doesn’t come easily–it is packed in with pressure and cemented by blood and slubs of new tissue. And that’s exactly the point–the pull debrides the wound, “cleans it,” keeps it open. For me it is a horror to hurt myself that way–to rip open a sore that is doing its best to heal closed. To tug at the tissue that is so raw and tender from months of inflammation feels counterintuitive from my deepest fibre. I find that it’s only when I breathe my special way that I can make my hand do what has to be done. (more…)

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BADD: Those long, dark nights

Posted on May 9, 2008. Filed under: Friendship, health, Mormon Life | Tags: , , , , , |

by JanaBADD logo
Note: This was originally posted at pilgrimsteps.com and was written for “Blogging Against Disablism” Day (BADD)…

In the wee hours of May 1st as I was lying in the hospital bed trying to tolerate the noises of my fellow roommates (mostly really bad soap opera TV in foreign languages but also a fair share of random screaming for pain meds, IV pumps beeping, and toilet flushing), an aide came in to take my vital signs.

Let me just tell you, reader, that at this point I was not a happy camper. Though I was in terrible pain, the doc who had admitted me had only authorized small doses of ibuprofen or tylenol and I was told by my night nurse that nothing could be done about that until morning. So I was just aching, trying to just focus on my breath, to not hurt so much. I also felt scared, the kind of scared that only happens at night in the hospital where nights are exponentially long. So this aide comes in to take my vitals and I hold out my arm for the pressure cuff and open my mouth for the thermometer.

Then as she’s finishing she sees my left leg uncovered and propped up on a pillow, in all of its infected ugliness. She shakes her hemy arm with a hospital band ad and says, “I sure hope you don’t lose it.”

I’m sure she meant it as a fairly innocuous remark (and certainly I’d stressed to my doctors how important the health of my one leg is, and this fueled much of their aggressiveness with my various treatments over the past few weeks). But that remark, combined with my own discomfort just put me over the edge. I tried to call John and couldn’t figure out how to work the damn phone. I started crying into my pillow. Wondering if maybe I really was going to lose my left leg and no one had told me yet (I should note that this info was also withheld for a time from me when I lost my right leg due to cancer). I just sobbed and sobbed. When I eventually stopped and reached over for a sip of water I saw one one of my roommates from across the aisle, walking towards me, leaning on her IV pole. (more…)

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My leg: a letter to a young friend

Posted on December 8, 2007. Filed under: body image, humor | Tags: , , , |

I wrote the following letter to a young friend recently. He was interested in learning more about my prosthetic leg.

Dear [Young Friend]:

I heard from your Dad that you’ve been learning about prosthetics and that you wanted to learn more about my leg.

My leg is a lot like the one in this picture.

However, my leg doesn’t really look like that right now, because I have a covering over it. The covering is called “cosmesis” and is made of soft foam shaped to look like a real leg. My leg is covered now because the metal parts on it kept tearing holes in my clothes and I kept pinching my fingers in the moving parts (and that hurt a lot!).

One of the strangest things about having a robotic leg is that it’s powered by a battery and I have to charge the battery every 24 hours or else the computer in my knee will turn off! So when I take my leg off at night I plug it into the wall to charge it up (through a cord that plugs into my knee). Sometimes when I travel overnight I have to charge my leg in airports or in bathrooms or anywhere that I can find an outlet. A few years ago I found myself stranded in a Canadian airport and my battery almost ran out (I can tell when the battery is getting low, because my leg makes some beeping sounds and vibrates–sort of like a cellphone). When I finally found an outlet and plugged in at this airport, the security guards got very nervous. I think they suspected I was trying to set off a bomb! If you want, you can see a photo of me charging my leg in an airport here.

I can’t get my robotic leg wet because water could damage the computer in my knee. So I don’t wear it when I go to the beach. I have a special beach leg that’s got a round black rubber foot. I also wear my beach leg for rock-climbing–you can see a picture of me doing that with my beach leg here.
I can get my beach leg wet and the special rubber foot keeps my leg from getting stuck in the sand when I’m walking around in the water. Sometimes I just don’t wear a leg at all when I’m at the beach or at the pool–because it’s really easy to swim with just one leg.

If you have any questions for me about my leg, you can send them to me in an email message or you can save them up for the next time I see you.


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Posted on March 6, 2006. Filed under: Uncategorized | Tags: , , , , , |

On my first-ever website, this was my bio:
“I have lost my right leg, my left earlobe, and my father to cancer. My favorite color is red.”

I felt, back then, that detailing these losses told most of the story of my life. Cancer had taken so much from me.

Now I’ve lost much more to cancer—not from my own body or from the bodies of my immediate family, but from the many friends I’ve known in the ensuing years who have lost parts to this disease or who have died from cancer. There’s something about being a cancer survivor that connects me to others who are struggling with cancer. When acquaintances are diagnosed, they often come to me. Sometimes it’s because I’ve been there and I can share their experiences in the ways that no one else can. Sometimes it’s for insider knowledge—to help them to strategize a treatment. Sometimes it’s to grieve…to talk about what it’s like to lose a part of yourself and go on being “you.”

I don’t really remember anymore what life was like before my cancer. It’s been over 20 years now and my body feels right just the way it is—missing parts and all. Though I can’t say that I’m ‘grateful’ for the experiences that have come my way because of having had this disease, I am happy that it has helped me to reach out to so many people. There is something about being a cancer survivor that allows me to cross bridges of age, gender, race, and to be friends with people of all kinds. I love that part of my life. It feels good.

In every ward that I’ve lived in there are families who are in some stage of a cancer experience. It is a disease that has touched almost every family that I know. I’ll bet that you and everyone reading this post has been impacted by cancer somehow. We probably all have our stories of family members or good friends who have suffered with this disease. It’s odd how cancer ties communities of people together through a network of experience and loss. But it’s also the one gift that can come from such grief.

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