Monthly Archives: March 2014

rainbows on the floor above

We’ve had lots of help from family these past twelve days, which has been nice. My parents came in town for the first six days, and then M’s mom came in Friday afternoon in time to do the pickup rounds and is leaving tomorrow morning after a round of drop offs. I’m feeling better each day, but there is most certainly still a limit to the amount of vertical activity I can do. I reach my limit and I listen to it. No backwards steps here, I hope.


I miss life on the third floor – I haven’t seen it in awhile. F’s taking full advantage of her freedom up there, selecting some pretty fantastic clothing combinations. She’s had a few meltdowns, but not too many. That’s a good thing – it’s hard to be stuck in one place, unable to help out. Our bed had become game playing central, a good place for homework help, and on most nights, the book reading station. I can walk up and down stairs now if I’m really careful, but it takes forever, so I limit the climbs.


Tonight Grandma was reading to F before bed, a book about a rainbow of colorful flowers. M walked into the room and overheard the book. He told F to remind him tomorrow and he’d show her a beautiful photograph he saw on Instagram of a vast field full of tulips – every shade of the rainbow. F jumped off the couch in her room and told her grandmother to wait just a moment. She ran over to one of her book shelves and started running her finger along the spines until she found the one she was looking for, tilting it out to grab it and take it over to the couch. It was a book on Matisse, and she flipped through the pages until she found Bowl of Apples on a Table. She pointed to it and swirled her finger around the inside of the bowl, over the apples. They didn’t get it at first, what she was talking about, but then she said it was a bowl full of apples, all the colors of the rainbow. We were talking about rainbows, right?


There is never a way to be there, all the time, to see everything. I loved this story, I love the way her mind thinks, the lightning fast connections she’s firing around the room, around her brain. M came down immediately to tell me that story, about the rainbow of apples by Matisse hiding on her shelf somewhere.

2014-03-27_1395949438The Girl in the Purple Hat does Degas’ Little Dancer Aged Fourteen pose on a recent field trip to the art museum.


admiring: 27 march 2014

I thought this Friday I’d just be bursting with fun things to share that I’d found during my eight days of leisurely lounging in my bed without a care in the world and a bevy of servants waiting on me hand and foot.

Ha. Not even close. Now I need to figure out how to record my time off at work – if I’ve plowed through all my sick days, do I really have to call any of it vacation? I barely even watched basketball, and I love basketball.

2014-03-18_1395186795This is me, according to F (and Playmobil)

That, however, was not me. I watched a couple of minutes of a couple of games on an iPad in between my pain medication induced naps and general feelings of malaise and melancholy. Sitting in front of a computer is about the only aspect of my work that I can manage at the moment, and the last thing I want to do is browse on it after hours. But I’ve a got a few things to share, and don’t want to get rusty, so here goes.

Can we talk showers for a moment? Let’s do (since I’m forced to forgo them completely for several weeks). This shower, open to the outdoors:


Heck, I’d take this one, at least for awhile.

Judy Blume and Lena Dunham talk about what you should (and shouldn’t) have on your reading list. Timely, since E’s plowing through my old paperbacks at record speed, including reading and re-reading, Are You There God? It’s Me, Margaret, while lying next to me in the bed, patting my arm, fluffing my feet pillows and being all around awesome.


I finished this book, and this one. Thinking I’m going to pull Rebecca off the shelves downstairs (since we’re talking old copies of my paperbacks already), and this book off E’s shelves.

And last, but certainly not least, this fantastic source for all things happening locally (especially if you have kiddos in tow, but even if you don’t). The woman’s an organizational genius. I plan to click on this often – even if the extent of my next few months’ outings are limited to x-ray appointments and stitches removal. Ouch.

Perhaps your life has been more interesting than mine lately. If you’ve got anything good to share, do tell.

P.S. Thanks for all the virtual love and care this week. Instagram kept me sane and somewhat connected. Feel free to follow me (upper right hand corner – it’s set to private, but I’m happy to answer requests).

the flip side: the unseen, the assumed, the remembering

It’s been seven days since I’ve seen my feet.

In the absence of anything visual, there is only sensory. For the first couple of days, the feeling was that of a butcher knife sliding through the joint between my big toes and the second ones, all the way down to the center of both feet. More like a thicker metal plate than a razor thin blade, a stomach churning sensation. I would take the prescribed narcotics every four hours. The first hour would be blissfully neutral and I would sleep, until waking to the throbbing nature of that stake pinning the web of my foot to a wooden board that had surely been attached to the underside of both feet at some point in the process.

M took a photo of my feet right before they wheeled me away, just after the surgeon had stopped by my bed, asking me to sign the consent form, and then marking both feet with arrows and scribbles. This is less necessary when I’m operating on both feet he joked, and we laughed at the childish look of the scribbles. I wanted to grab the pen and add my own doodles and notes.  Fix me… don’t stop here…match the other one… I’ll take red polish on the nails when you’re done…bring me back.

My feet have always just been my feet, but then, with the purple arrows and scribbles, splayed out in front of me just beyond the hem of my hospital gown, they looked pale and worn and deformed. I considered erasing the marks from one foot for just a moment, reducing the strain of the operation for all parties involved, but I knew I’d just be back again in another six months, another hair net, another breathing tube, one straight foot, one more crooked, now, next to it.

I stare at my feet (for what else is there to do) and I wonder what they look like now. The swelling has reduced some, and I carefully poke around for my toes. I’m surprised when I feel them with my fingers, they seem disconnected and not anywhere close to where they should be by the feelings in my feet. I will see them tomorrow, and a pattern of stitches that I only know by feel. Everything is knitting itself back together, tendons and nerves and bones and skin, what a remarkable thing this body is, deformed and reformed, seen and unseen.


I assumed certain things beforehand, because, naturally, why wouldn’t I? I have always bristled at the notion that one should not assume or expect; I will grant you the fine line between outlining a mental list of how things might go down with the age old chant to assume makes an ass out of u and me. Some may disagree with this, but I hold onto it. I assumed I would wake back up, I assumed that it would hurt, I expected to be grateful, I expected to be frustrated. Before my husband was allowed back to the pre-op room, my nurse took down some information from me. Do you have an advance directive and will in place? Do you have someone to care for you upon discharge? Do you have a reasonable  expectation that you are returning to a safe place and a safe caregiver? Yes, and yes and yes.

I assumed that I would remember the process of going to sleep. I never even saw the anesthesiologist outside of the earlier introduction that morning. His assistant added something to my IV and I counted two ceiling lights in the corridor before forgetting the rest. I thought I’d at least be able to count backwards from 10 and get to 9 or 8, but nothing. Perhaps I did, but my father said the relaxation drugs also erase the memory, so I have nothing from the point of kissing my husband goodbye, turning two corners in the room and those two corridor ceiling lights. I knew I had to get on an elevator (based on my observations of the surgery center’s floor plan), but I never learned if I went up or down. Probably up – my husband said the basement housed the loading docks and the extra toes in the event of a mistake.

I assumed the pain medication would work, but then it stopped working. I did not expect my heart to feel like it would explode from my chest, the adrenaline rush through my body. I quit that stuff right then and there, and wished I had done it sooner.

I was told I would walk again, and I expected to. I did not expect it to take five days, but I did it. Slowly, steadily, on my heels and with help, but walking just the same.

I assumed I would be able to while away the quiet hours of recovery with my laptop, browsing and typing or playing movies, a small stack of books, catching up on Instagram, napping. I expected to be in pain, but I did not expect to be in so much of it, and to feel nauseous and throw up repeatedly. I didn’t expect the day long migraine that settled an unrelenting throbbing pulse into the space just above my right eyebrow. I didn’t expect my wrists to hurt from holding my phone for more than thirty seconds. I didn’t expect to feel so utterly dependent and claustrophobic by having feet that felt like swollen, throbbing club feet, completely useless to me. I expected to be bored, but easily distracted. I didn’t expect to feel so utterly, utterly lonely. So many people to pick up the slack of one man down – driving, medicating, feeding, laundering, icing, cleaning. It’s so hard to lie in one spot with nothing to do but ask for things, another blanket, a shift of pillows, a colder ice pack, a trip to the bathroom. So it’s even harder to ask for someone to sit and let the rest of it go, and just be another body in the room when you can’t give anything in return like conversation or interaction, when you don’t even smell good or look good. But sometimes you just need someone to intercept some of the thoughts that bounce off the ceiling and right back at you as you lay there on your back, alone. I think about those that live alone, immobile, in beds or rooms or cells, and I can hardly bear it. I think about my own wishes – no beds or boxes, I remind him before they take me back – and I wish for lots of living in this life, and then just let me go. I should sit more with those that can’t go anywhere yet, and I feel badly that I rarely take the time to do just that.


My only real experience (up close and personal) with surgery has been with my husband – oral surgeries and then one on his hand last year. They convinced him to not be put fully to sleep with his hand, and they promised him they’d medicate him to the point that he wouldn’t be aware of his surroundings at all. I was allowed to stay with him until they wheeled him away, and then I sat in the waiting room, receiving phone calls at regular intervals directly from the operating room, noises of the procedure loud and clear in the background of those conversations. They came to get me when it was over, and he was still groggy and slurred from the drugs, repeating the same few sentences over to me again and again. I found it humorous and slightly adorable; he finds it far less amusing. I was prepared for the role reversal this time, but the process was very different – less like the slow process of sobering up, more like the on/off switch of awake and asleep. I was awake, I was asleep, I was awake again.

When I woke up I was completely alone. I didn’t squint at the lights, but I remember it was a well lit space, clean, and slightly yellow. I turned my head to the left and then the right and saw walls in both places. I started to cry.

A nurse appeared almost immediately, or what seemed like immediately, and I think she spoke kindly to me, but I don’t remember what she said. I was so overwhelmed with sadness and grief, tears rolling down my cheeks onto the pillow. Then my husband was standing there, and my mom, I think, and still the tears were flowing. I felt the urgent need to explain how sad I was, lest someone think I was crying from pain or from relief or from fear, because it was so very certainly not any of those things. I was crying about my niece and my heart was so broken and so profoundly sad and I couldn’t think of anything else.

I’ve thought about it for a week now, and I still don’t know exactly what it means. When I told E she thought it meant Erin had been there with me, maybe I had seen her or talked to her, or even said goodbye to her. I don’t need to over-analyze it, or discuss theories on it, and I really don’t want to. But every time I think about it, I cry again. There was nothing, and then I was awake, and I knew I was awake and alive and I knew all of that for certain because of one thing, the overwhelming reality of her loss.

My friend Brooke wrote a post last night that took my breath away, because that’s just what she does. I had talked to her about various surgery related things, but not about this. And then I read her post on the novella The Return of the Soldier, and her thoughts on trauma and memory and loss, and then I reread it again and again. I recommend you read it as well.

I think about the funny story of M after surgery, the way he kept telling me over and over again about watching The Price is Right in the waiting room before they called him back. We laughed again about it before my surgery when we walked into the waiting room and the same game show was playing on the television. When he came back to me it was all about memory for several hours, the endless repeat of his last memory before falling asleep and waking up and resetting the cogs and wheels in his mind to move forward from that previous memory. That surgery was a few weeks before my niece’s diagnosis and months before we would lose her.

He waited patiently for several hours during my surgery to return the favor – his own gentle jibing at the way I would come back out of the drugged haze and become assimilated to life again on the flip side. But there wasn’t a slow and humorous ascent back into this world. A door shut, the light switch flipped on, and I knew Erin was gone. Again. Still.

Brooke writes:

When it comes to real life, happiness is a by-product, but it can’t be the purpose. There are too many things in life that are poignant and heartbreaking and honest and sorrowful, and that also hold more than their measure of good. And love is one of them. Love for a child who dies is one of them. And that truth still aches. It makes us heartbroken adults instead of carefree kids. It’s etched grief lines around our eyes and changed us in other, less visible ways. But it’s true.

Was it grief that I was feeling anew? Did I see her and talk to her and say goodbye to her and thought our time together might last longer? Was I feeling relief that I had returned? Guilt that she hadn’t? Perhaps it was all of these things, together. I’m sure that it could have been the drugs or the circumstances that led to such a different reaction from me than from my husband the year before, but in the end, the way that I knew that I was alive and awake and myself was to first feel sadness. Because I knew that my husband and my mother were there even though they were unseen. I assumed that my children were okay, healthy and happy and ready for my return. It was the remembering that made me whole again, me again. My feet are fixed, the sound of my family echos through other corners of my house, and I sit in my room, awash in fresh grief and hoping that I remembered to tell her how much I loved her.