Category Archives: deep thoughts

marking time

Yesterday I marked one month since my surgery. Honestly, it feels like it was about six months ago–so much has happened in the interim.

When I feel kind of discouraged about still being tired, sore, or limited, I need to just remind myself just how short a time it’s been since I went under the knife and how long deep healing can take.

On another note, I’ll be doing the drawing for the giveaway on Monday, so make sure you’ve left your comment if you want to win the Faded Paper Figures CD. And just for the record, I am just loving all of your “dream jobs.” You people are so creative and cool!

an ethical question for you

more blue

For awhile now I’ve been thinking about setting up an etsy shop, selling bundles of postcards/prints with my flower pics, some items that I’ve crocheted from recycled yarns, and maybe even a painting or two.

But each time I’ve set out to list items on etsy, I talk myself out of it. The main reason being that I aim to live lightly on the earth, and while I think my pictures make lovely stationery, that’s trees giving their lives unnecessarily, right? Although I will admit that I love writing letters and I buy non-recycled stationery sometimes, I’m not sure that I could sell a non-recycled item myself. And while I love crocheting things as gifts, I’m not sure that it’s worth the fuel to ship such items to whomever might order them.

But I use etsy.com all the time–loving to buy from the various sellers there. And a part of me wants to join in the fun of my other friends who sell their artsy items online.

What do you think? Do you buy items on etsy? If so, what type of things do you buy? How do you balance your desire to sell/buy your goods online with your desire to minimize your eco-footprint?

Photo: a cluster of blue flowers from a neighbor’s garden. This is one of my all-time fav pics. The colors in this image make me feel so peaceful.

Because he sings to me…

from the archive: a family classic photo
John left this morning for the long drive to retrieve our kiddoes from Northern Utah, where they’ve been staying with relatives for the past few weeks during my recuperation.

He rented a car to make the long drive (because our rarely-used beater isn’t up for such things anymore) and came home with a Mustang–the agency was out of every other kind of compact or economy car. When John brought the car home he revved it up a bit in the parking lot and then took me for a drive around the backside of the campus. When I closed my eyes I was in high school again, behind the wheel of my 70’s vintage Mustang, racing down Truxtun Ave with the stereo cranked up. I was so cool and free. It wasn’t until I bought my first “practical” car (a Nissan Sentra) that I realized the power that was the Mustang. It had been a police car, rebuilt by my grandpa for all of his hot dates with his then-girlfriend. When he died, it was my inheritance. When I went to college, my younger brothers took it over–and at that point it gained the appellation of “The Crustang”.

John’s already called twice three times today, one time just to sing to me (as he had when he left my bedside early this morning).

Because I’m in a reminiscent, sentimental mood, I’ll suggest a few good reads from past blogentries about John:

—John, singing for Jesus
—John and THE CHAIR
—John and his hair
–John is a priest and a pirate and a nemesis of Harry Potter
—John wears skirts (just for me)
—John fights werewolves
—John saves the day
–and, finally, John in almost all of his glory (with a youtube clip of our shipboard anniversary getaway that took us to Paris and beyond…)

The pic above is a family favorite–taken by a beloved professor friend (she was trying just to get a few romantic shots of John & I and the kiddoes kept creeping into the photo). This image hangs over our kitchen table.

the prayer of a stranger

Upon waking in the recovery room from my recent surgery, I realized that I couldn’t breathe. I gasped and gasped, trying to scream to let someone know that I couldn’t get enough air. Soon a nurse was at my bedside, placing an oxygen mask over my face, asking me questions about my asthma history that I couldn’t answer. Apparently she added a breathing treatment to the flow of oxygen and I was soon able to draw in air without so much struggle.

After about 10 minutes on the oxygen I was relaxed and the nurse was working around me to disconnect the breathing mask. As she stooped by the head of my bed she whispered to me, in such a way that I’m not sure if I was meant to hear it or not.

She said, “I’ll be praying for you.”

*****

For all of my openness in the blogging sphere, I’m actually a fairly private person in real life. I find it somewhat embarrassing to have strangers take such an interest in my life merely because of my physical disability. Yet at the same time, I’m continually surprised by those like the nurse–or you who read this blog–who are willing to care so much about me.

In the past I’ve written some posts about the ways I feel pitied and demeaned because of my disability. I still feel that way much of the time–especially when someone’s action seems to be more about making themselves feel good than about offering aid. And even as I feel uncertain about the actual power of prayer, I am not ambivalent about the power of human connection. There’s something beautiful and courageous, and curiously intimate, about a stranger or an acquaintance offering a prayer on my behalf.

Though I ceased praying in the Mormon fashion quite some time ago, I still spend time each day in silent meditation. Doing so gives me perspective on my life. It helps me to remember what I believe and to put my actions in line with my core values. I can’t claim that my prayers or my meditations have improved anyone else’s life, even though I think often of others as I sit in silence.

I suspect that I won’t ever approach a stranger and tell them that I praying for them. But in my own way I am saying a prayer with each post that I write on this blog–sending my thoughts, hopes, and intentions out into the ether. Hoping that each of you will know that I care even if I no longer have the faith to couch my intentions into the form of a prayer.

what has to be done

I have a ritual that for my twice-daily 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.

As I performed my ritual this morning, my mind stuck for a moment on how “this has to be done.” In my case it has to be done in order for my surgery to be effective. But I let that thought expand and enlarge as I thought of other times in my life that I am doing what “has to be done.” I thought of my life as an amputee, how much of that is simply finding ways of doing what “has to be done.” Walking with a prosthesis, ignoring the stares of passersby, standing unselfconsciously in front of a classroom–not easy things, but to me they are not courageous, heroic or unusual. They are a means to an end. I have little choice in the matter. Like the gauze that must be pulled, I cannot change my physical difference. It is what “has to be done” for me to move through my daily life.

And of course we all do things every day that “have to be done.” It occurred to me in that moment of gauze pulling that my situation is no way unique. It is what makes me just like you. You have lots of things you have to do, things that bring a twinge of discomfort and frustration– even outright pain. But they are “what has to be done.”

Although I didn’t articulate it in this way when I first began blogging, I would say that most of my online writing (at least on my personal site), is my attempt at making peace with the “what has to be done” of my life. A big part of that is writing about my disability. Because it’s so often difficult to experience the pity of complete strangers, I need to discuss what that feels like. I need to tell the story of what happens when a one-legged woman walks into an athletic facility or is harassed by TSA employees at the airport.

Last night as I was hobbling across the living room in frustration–trying to walk on my fake leg and my wounded leg and taking one big leap to the sofa because I just wanted to get off of both of my feet as fast as possible, my daughter came over to comfort me. She expressed her sympathy at hard it must be for me to walk right now. I was angry and tired and hurting. I looked up at her standing over me and suggested that her life might be a whole lot better if she’d been born to a Mom with two good legs. A Mom who could be outside playing and running and not one who had to ask for help each time she needed to use the toilet.

CatGirl, with all of her young wisdom said, “I only know what I have. I don’t know what it’s like to have a Mom like that. I only know what it’s like to have a Mom like you. So I only want you to be my Mom.”

I think CatGirl understands a lot about “what has to be done”–maybe more than I do. She knows that you only know what you’ve experienced and that’s that. So “what has to be done” for her is to be gentle with her Mom when she’s healing, to refill my water cup, to not complain as she trails alongside me through clinics and hospitals. She hears me scream and cry when I’m hurting and she takes in in stride. This afternoon she patiently helped me clean off all of the adhesive residue that was still stuck to my arms from my latest round of IVs–knowing that I couldn’t reach the goop on the backs of my arms myself. It was “what had to be done” for her Mom.

I think I’m still learning “what has to be done,” and that’s why I keep blogging. I’ve got to write to make sense of my place in this world, to understand the madness and beauty and arbitrariness of it all. And I also feel like someday after I’m gone (let’s say in 30 or 40 years from now) CatGirl might be facing something as painful as having to debride her own wounds, and maybe she’ll look back on this blog–these thousands of words that I’ve written here over the years–and something here will strengthen her to face the realities of her life. To do what “has to be done.”

inside-out


[Note: for my more gentle readers, you might want to skip this post and enjoy yourself some kittens instead. Seriously.]

Remember that game we played as kids, Operation, where you’d have a pair of tweezers and you’d attempt to pick out a body part from your surgical patient without hitting the sides of the hole? Each time I look at the wound in my leg that game comes to mind.

In order to get out all of the various channels of infection that were in my leg, the surgeons had to cut down deep into the soft tissue–in some places they went down about 5-7cm deep. In doing so they cut through various layers of stuff–dermis, fat, muscle, etc. Then they left the wound totally open so it would heal from the bottom-up rather than from the top-down or from the sides filling in. Leaving it open allows for the wound to be cleaned twice daily to flush out any residual infection. Then the hole is packed with clean wet gauze to absorb any yuck and so prevent it from closing prematurely. It’s also pretty damn painful.

I am no stranger to nasty wounds. Not only have I lived with this festering infection for four months, I’ve also dealt with the healing wound of my amputated right leg, which was pretty nasty-looking for a long time (think Frankenstein).

But for some reason I’ve been completely flummoxed by this one. Looking into the wound makes my head spin and my stomach lurch. I think it’s the cross-sections of each layer that affect me so strongly–they are slick and wet and they move. As my muscle flexes I can see it from the inside. I can see my own nasty fat. The edge of the wound has become sort of hard and dry like the way bologna looks after a few days when you forget to seal the plastic wrapper closed all the way.

When I was discharged from the hospital my docs assumed that I could change my own bandages. What they didn’t know was that I’d only had one slim glimpse of the wound and had refused to look again. Fortunately John was on hand to do learn how to do the cleaning, packing, and bandaging. But this wound is going to take months to heal and I can’t expect to John to always be there to manage this task for me. I feel it’s time for me to be able to dress my own wound.

But the honest truth is that I sucked at the Operation game. When I was a Bio major the only lecture I even walked out on was when were were viewing surgical slides (I went into the parking lot and dryheaved). As much as I am fascinated with the human body and it’s functions, as much as I am not grossed out by blood and poo and just about anything else ooky and bodily-related, this seems beyond me. It’s not just the pain, it’s even bigger than that.

Quite frankly, I am embarrassed about my squeamishness. In an attempt to get more acquainted with my wound, I had John send me some of the digital photos that he’s been snapping daily so we can note any changes in color, shape, discharge, etc. I played with one of the images in photoshop, trying to take control of it and make it be something that I could get used to. No matter what I did–changing colors, saturation, fuzziness, etc, I couldn’t make it into something that I was comfortable with.

It’s my own leg and I’m completely scared of it. Why? I don’t know. It’s not a rational response, for sure. I want to get over this, and I keep telling myself that I am brave and strong and I can do it. Any advice?

quakin’

Just survived an earthquake in the hospital. We’re on the 3rd floor and things really shook but stayed intact. John and Catgirl were close at hand–it was CG’s first real earthquake experience. What a memorable one that will be!

I am feeling pretty good today. The wound is feeling better, the PICC line means no more IVs, and we are trying a new antibiotic because of my allergic reaction to the previous one. Everything is looking up!

I do hope that all that were hit harder by the quake will be okay.

today

today was 100% jampacked with drama==can’t detail it all but the highlights included surgery, a PICC line, and a plate of pancakes that waited all day for the moment around 7 pm that the docs cleared me for eating again.

Every single part of my body is sore right now. As soon as the pain meds I just took kick in, I will be off to the land of happy sleep for many hours.

🙂

update (with some details)

Because so many of you have asked for more details about what’s going on, this post will offer more info than I typically give on the blog.

In a nutshell:
The past few days has been a parade of docs trying to come up with a good treatment plan. Because of the nature of the problem, I have a team of orthopedic surgeons, an infectious disease team, a general surgery team, and a family medicine team working on case (translation: a nonstop flow of white-coated people at my bedside all disagreeing on what should be done next), In the meantime I’m being given some super-strong antibiotics to fight the infection.

It looks as though I will be headed into surgery tomorrow morning–where they will open up and clean out the various pockets of infection and also remove any scar tissue that’s making it difficult for the wound to drain well. Tomorrow I will also have a bone scan to see better whether my bone is infected (the MRI showed some inconclusive results on this matter, so even though the docs are fairly sure my bone isn’t infected, they’d like to be completely sure because it will affect how many weeks (months?) I have to be on antibiotics).

Our friend Kathy is coordinating meals and care for our kids. If you would like your email address to be added to the list for coordination, drop me a line in the comments here. I’m up for a few visitors, but we’re keeping it fairly selective given that I tire easily. If you’d like to visit, please chat with John first, to make sure that the timing is good. I’m answering my cellphone and room phone rather sporadically right now, depending on how I feel at the moment and how many docs are huddled around the bed. Please understand, too, that John is working hard to get back to everyone who’s contacting him, but yesterday he did so for nearly 3 hours and then was late to get to the hospital as a result. I know he wants to talk to each of you, but he also needs to have quality time with the kids when he’s home and he won’t have time to answer every query as he’s moving frequently between home and hospital.

As for how I’m doing…
I’ve been super-lucky that for the past 24 hours I’ve had a room to myself. I don’t expect this to last too much longer, given how busy the hospital is, but it’s allowed me to have a lot of peace and quiet. The sun shines in my window here each morning and I can hear the birds chirping in the trees. Friends have brought me some healthy fruits and veggies so I can get some relief from the Starchy McStarch hospital fare. I also have some scones and tea on hand for comfort and some very high quality dark chocolate, too. I have great docs who are all committed to keeping me here until I am truly well. If you want to focus your thoughts and prayers somewhere specific, please pray that they can contiunue to find good veins for my IV (an ongoing problem), that surgery will be successful in clearing out the affected tissue, and that something will come of the cultures to give the docs a better idea of what bugs are actually in my leg. And please, friends, don’t worry too much. I am in good hands here and the pain is only a fleeting thing.

Love,
Jana