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Opening Old Wounds

Drawing courtesy of my awesome friend Julia Durgee

Those Bruises That Will Heal? Well, they did heal. About 6 weeks after the December surgery, for the first time in 6 years, I felt healthy-ish. WHOA!!!!!!!!!!!!! The -ish b/c I have temporary “plumbing” that is not at all normal. But I was no longer sick. No longer on steroids or medications. In those ways, I was the Alicia pre-2004, a “me” I barely remember. I sleep through the night. I sleep more than 4 hours a night. I wake up in the morning and can walk right out the door. I can drink coffee on the go. I can eat breakfast in the car. I can go to a restaurant or a park or a mall or someone’s house and not have to investigate the bathroom situation, a process that involved figuring out: how many there are, how many feet away, instantly doing the math of people-to-bathroom ratio, all the while keeping my fingers crossed that I wouldn’t have to use the adult diaper I had on. That was my life and suddenly it wasn’t. All those milestones listed above were so earth-shattering to me, but I experienced their meaningfulness quietly, for they probably mean nothing to the average person. Eating in the car or leaving your house before 11am? Big deal, Alicia! But really, big deal, Alicia. 🙂

It has been liberating to say the least. When I got down to no naps a day, was no longer in surgery pain and had this new life, I took a trip to Philadelphia to work on the photo shoot for our next book, Microcrafts. I went to NYC and met up with various friends by scheduling meals out. I came back to Pittsburgh and lined up volunteer positions in hospitals because over the last year I developed an interest in going back to school for nursing. I want to see what it’s like to be on the other side, the one not in the hospital bed. And then I started looking for jobs…

I knew my year would be chopped up, just like I would be, chunks of time spent either in the hospital or recovering, so it was no use looking for a normal full-time job. Such a thing isn’t exactly my cup of tea anyway. (See various resumes, available upon request 😉 ) My dad told me I had a “free pass” this year, that I didn’t have to do anything work-wise, to which I responded, “But I don’t want a free pass.” It would be the first time, in 5+ years that I could actually commit to a job where I had to be there at a certain time, where I had to be *reliable* again. I was itching to be that Alicia again.

Of course, I wanted to get back into teaching or childcare, “professions” I had to devastatingly leave behind after I got sick. I interviewed and took a job as a nanny for an adorable and curious 2-year-old adopted from Nepal, who doesn’t yet talk but understands A LOT. Thirty to forty hours a week for 7 weeks in March and April, 5 minutes from where I lived. I was gratefully back in the land of libraries, playgrounds, changing diapers, holding small hands while crossing streets, tending to booboos and executing sleep-training, aka Alicia Bedtime Bootcamp.

Two-and-a-half months after surgery, I could bounce a 2-year old on my stomach and every time this little one giggly sat on my stomach waiting for that bouncing, I thought, Good God, the steps it took to get here, the years, to be able to do this. Good God. During this time I was also editing Microcrafts and crocheting up a storm…. In May, I traveled with the little one and her mom to South Carolina, where mom directed an opera as part of Spoleto and we all lived for a month. A whole new world of libraries, playgrounds and streets to cross, etc.

For those couple of months, where this one little kid took up so many hours of every day, I was on cloud nine, no matter how exhausting or trying. I was doing exactly what I wanted to be doing. And as I got emails about magazine contributions and writing this or that or making this or that, I shut off my laptop and walked out the door, pushing a stroller and looking forward. Trying to care about this other “career,” but not really caring at all. This is nothing new; I can’t even count the things that I (foolishly?) said no to so that I had more time to bike, go out with friends, take road trips, lay in the grass. On the last day in South Carolina, walking around our waterfront neighborhood at sunset, I said to the little one, “I’m gonna miss holding this little hand in mine” and she kissed our holding hands.

I find myself at a loss for words when trying to describe what these months of taking care of this little person meant. Well, they meant…everything. I felt the same speechlessness when I would visit kids I nannied for years after I had to leave them, deep down sort of knowing that what I mean to say but can’t is, “You are making me want to live.”

I returned to Pittsburgh in June after a Nashville detour and almost immediately started teaching at the Mattress Factory, having created a class for 6-8 year-olds on upcycled art and issues of sustainability. Plastic bag fusing, t-shirt bags, newspaper flower pots, toilet paper roll spool knitting. This last one, spool knitting, was insanely popular with the kids. I couldn’t get them to stop! It’s poignant that it’s a toilet paper + yarn project, no? I fondly remember them asking me, “Can we skip snack so we can keep spool-knitting?” OMG! Too many conversations to recount here, so many hugs goodbye at the end of the class. It made my heart hurt, but in a good way.

During this interim, this stretch of months between surgeries, I pretty much did exactly what I wanted: teaching, childcare, creating, traveling. For years I tried to forget how much I loved having the kind of jobs, that no matter how sleep-deprived, over-caffeinated and sometimes underpaid I was, I was so happy to have. And I knew it at the time. There was no “I took it for granted.” I never did. I loved it even when I was falling over from exhaustion or feeling defeated by challenging kids. And I never imagined doing anything else…until I had to.

I have nonchalantly mentioned and thought about “retiring” from crocheting and all this crafty craziness because I now envision returning to what I once did or doing something entirely different. Closing this chapter of my life…because I can. (And I’m collecting responses to this declaration because man is everyone putting their two cents in!) But when I jokingly said, without any context, to the kids in my museum class that I was thinking of retiring from crocheting, they all said, “Noooooo” and “But you bring such joy to the world…and ideas!” It was cute and heartfelt, especially as they only know a small sliver about what I do/make after I brought in a bag of my crocheted things for them to see. They “get it” though, because they are kids.

I am less than 40 sales away from 2,000 on Etsy, which is absolutely crazy! I just received the advanced copy of Microcrafts and I have multiple book contributions in the works, which I will link to in due time! It’s all so overwhelming and amazing, and feels so far off from the day I sat in bed, sick sick sick so many years ago, with an Intro to Crochet book, a crochet hook, a ball of yarn, and the angry said-out-loud words, “If I’m gonna be twiddling my thumbs indefinitely, I’d better as hell have something to show for it.” Looking back, well, I think I have a little something to show for it. 🙂

Amidst all this awesome-ness, I am having to gear up for surgery #2, which will be “as bad as or worse than the 1st,” in the words of my surgeon. Lovely, but I do appreciate the honesty. This one is longer in duration and involves a slightly larger cut in the same place, but nothing can be done laparoscopically. There is actual “prep” for it that is identical to any colonoscopy prep, which means a day of starving, downing a nauseating gallon of laxative solution and getting “cleaned out.” And in my case, there will be a lot of vomiting because I have never been able to do colonoscopy prep without throwing up a ton. The length of hospital stay is about the same (a week) and even though the actual surgery is different from the first, the process of healing (many weeks) and the amount of pain (a lot) is also pretty much the same. Fingers crossed I heal a little faster because I am no longer on steroids! Well, and I’m not half-dead this time around. 😉

My surgeon said the 2nd surgery is harder to face psychologically because you’ve had a stretch of “health.” The 1st surgery? You just want it all to end, whether that means embarking on a road to getting better or getting buried in the ground. I feel that even more now, that last year I was so done to the point of not really caring what happened, an odd calmness because I was tired from so many years of fighting a losing battle. Next week will stand in such sharp contrast to this week, and I’m not going to lie, I’m having trouble facing it. But as usual, I am reading my Nietzsche, Rollo May, Tolstoy and Camus to get through it because my coping mechanism is reading, my medication of choice hardcore philosophy. 🙂

I don’t feel so apathetic anymore. I think now I actually feel a bit more angry, having had that taste of what my life used to be like, a heart that was so full and a mind that was so stimulated, because of what I did professionally. And because I know I’m not going to have to bear it forever, I’m now feeling the full weight of the burden that was this disease, the massive amount of sadness, so much of which got internalized and went unexpressed.

During last year’s late summer hospitalization, I tried to be so conscious of having the “right” perspective, a positive attitude: when I’d walk down the hall, my IV pole beside me, I’d stare out the floor-to-ceiling window and force myself to think, “I’m looking forward to being out there” instead of “Goddamnit I’m so mad I’m not out there.” But I felt both. Some days, after taking care of the little one or teaching these kids, I had to remind myself to think “Wow I’m so happy to be doing this again” instead of “God I’m so mad I couldn’t do this for so long.” But again, I felt both.

Over time I have realized that feeling both ends of the emotions spectrum is okay, that it’s inevitable. That this “positive attitude” cannot emerge without me privately going through a lot of suffering and sadness and even having a negative attitude. It is not possible to be flat out “happy” about any of this. I’m not sure how else to articulate it than the self-helpish sounding, “feel the feelings.” Feel them, embrace them, try to understand them, work through them, and move on. There is a Chinese proverb that reads, “You cannot prevent the birds of sadness from passing over your head, but you can prevent their making a nest in your hair.” Amen.

Killer Pineapple*

You know how one day you wake up and a picture of your crocheted smiling pineapple is smack in the middle of a fancy food magazine? Sooooo, yeah. The western Pennsylvania glossy called Table Magazine wrote a little article about yours truly (well, the crocheted food of yours truly) for their spring design issue–you should probably pick up a copy! But here is the clip if you don’t live in the area:

You may or may not know this, but many of the items in my Etsy shop were originally custom requested or commissioned, i.e. someone writes to me and says, “Can you make a ________?” Last year, someone emailed asking if I could design a pineapple plush pattern, as she was a crocheter and couldn’t find one. As I never turn down a crochet challenge, I emphatically said, “yes!” The crochet plush world is not all that expansive in terms of designers, but it still feels special in a silly way when someone comes to me with these requests, some crazier than others.

When I saw the picture in Table, I knew it was one I had taken myself, the backdrop being these weathered wooden steps in our backyard. I had forgotten that this fibered fruit came to life here in Pittsburgh. I looked up the photo in my Flickr stream and also realized that this cute little pineapple photo shoot occurred one day before I landed in the ICU after a summer-long struggle with a ravaging chronic disease. And that could have been my very last creation–going out with a bromeliad bang? I can hear my NYC doctor now, asking why I didn’t come to the hospital sooner and me responding with an amalgam of crochet orders and writing assignments that I decided took precedence over fast-failing health. So in retrospect, it’s ironic that the first line of this article is, “Alicia Kachmar has a killer sense of humor.” You have no idea. 🙂

*good band name?

Bruises That Will Heal

I had my bags packed a week before entering the hospital, learning from the late summer’s hospitalization that sometimes these things get worse fast. Very fast. I had the same “If you don’t get better by ____day, you have to go to the hospital” scenario. I obeyed this time, learning from the early summer’s hospitalization that I was cutting it too close. I wrote drafts for my Etsy shop “vacation message.” Vacation. Right. No surgery was even scheduled but, call it intuition, I knew it was going to happen. I read and re-read the surgery and post-surgery descriptions, as if the act of knowing ahead of time could achieve some level of dealing-with-ahead-of-time. I attempted to reassure myself that my pain tolerance is high, but realized that all this means is that it takes me a lot longer than the average person to cry/break–the pain is still the same. I tried to compose light FYI emails “I might be out of commission for…a while, because there’s a good chance I’m going to have my colon ripped out. So, how are you??”

Riding in the car to the hospital I was thinking, the next time I am in a car, I’m going to be so…different, changed. Well, that’s always true after these hospitalizations. I tried to imagine what it would feel like to be missing an entire organ, to be “missing” my chronic disease, only to be temporarily replaced by other pains and difficulties. I got to bypass the ER entirely, a room made ready for me by my GI and PCP. “Good to see you…except, not,” I said to my GI’s PA-C. “Well, here we are,” I said to my GI. “We’ve been waiting for you…you know the drill for the first couple of days.” Oh, do I ever.

I will consume only clear liquids and probably get migraines because of it. I will be put on a ton more steroids. I will laugh inside my head at the few choices presented to me: orange or yellow jell-o? apple juice or cranberry? blood from the right arm or left? I will hear the sound of the wheels that means it’s check-your-vitals time; I will stick out my finger for the oxygen-checking and my arm for the blood pressure cuff, I will open my mouth for the thermometer all without opening my eyes. I will have the IV nurses look at my arms and shake their heads and say, “Your veins are gone. You know this is going to hurt a lot, right?” I know. An orderly or somebody in radiology will say, “You’re too young to be this sick,” and rather than say, “Apparently I’m not,” or “Really? Because I used to visit someone on the pediatric cancer floor,” I will just say, I know. My PCP will reiterate that I am “one of those rare cases” that doesn’t respond to steroids. I know. “We were talking about you…all these hospitalizations…” I know. A few days will go by and I will be told, “you aren’t getting any better.” I know.

On the day I was supposed to have an office consultation with a colorectal surgeon for a surgery that would happen “some time in January,” a different surgeon, the original’s partner, and his team come to my hospital room. He starts explaining the surgeries, the temporary ostomy bag and I say that I am pretty educated about all of it already. He says, “Do you want to get in there then?” I smile and say, “I’m pretty good with my hands.” It would be 3 surgeries instead of 2, since I didn’t respond enough to steroids, a year-long process rather than 6 months. “If we can get an operating room tomorrow, would you…? “Yes.” No hesitation. The “some time in January” plan is no longer the plan. “Are you ready for this?” “It’s not possible to be ready for this.” And it doesn’t really matter one way or the other. I am scheduled for surgery.

Later my GI comes in, to a stone-faced me. I shrug my shoulders and throw up my hands as if to say again, “Well, here we are,” but I say nothing at all. He says, “I know.”

It was always going to come down to this. I recall first being diagnosed, not far from this hospital. And later looking up ulcerative colitis online, a disease completely foreign to me at that time but which had already taken hold of my body. The statistic that 40% of cases would eventually require surgery. Require. A last resort when all else has failed. I cried and cried then because I had a feeling I’d be in that 40%, a case of pessimism more than intuition.

They tell me to take off my nail polish. “Are you serious?” “That’s how they check your oxygen levels.” I try to get out of it–probably the only thing I try to get out of while in the hospital! That is the one good thing left on me, that dead mass of cells at the end of each finger, perfectly painted blood-red, touched up on a daily basis in a pathetic attempt to be proud of something, anything, on this disintegrating body. My grandma brings me an arrangement of hemlock from the infamous hemlock tree. Bend, do not break. Bend, do not break. Know and feel the difference between giving up and giving in. I am giving in. I read cards from my mom’s class, “I am sorry your colon hurts,” “ps-your mom is a great teacher,” “here is Santa and his elf doing the hip-hop.”

My crafty community here put together a big basket of handmade and fun things for me, one of which was the Spill Your Guts! journal I wanted. If that isn’t perfect for this occasion, I don’t know what is. The night before surgery, I make a to-do list in it for my life, thinking about everything I haven’t been able to do, that I want to do.

I feel oddly at ease that night. She has no memory, nor fear, nor hope/Beyond the grass and shadows at her feet. (Hart Crane) I go into it expecting…nothing. I sign official papers that if I cared to read them probably say that I go into this saying exactly that, knowing that I may never wake up from it. What did I read in Anna Karenina just a week before? “Live in the needs of the day, that is, find forgetfulness.” What would I read in a Camus essay a month later? “What wells up in me is not the hope of better days but a serene and primitive indifference to everything and to myself.” I notice a trend in what I have been reading since I moved back to Pittsburgh, some books I sought out and some happened upon by accident, but many that visit the idea of courage, and try to define it, as well as the antithetical ideas of hope and despair (literally, without hope). All the quotes I write down point to the same ideas.

“The greatest test of courage is the readiness to make the greatest sacrifice, the sacrifice of one’s life.” -Paul Tillich
“No courage is so great as that which is born of utter desperation.” -Seneca
“The believer perceives and understands, humanly speaking, his destruction (in what has befallen him and in what he has ventured), but he believes. -Kierkegaard
“The acceptance of despair is in itself faith, and on the boundary line of the courage to be. In this situation the meaning of life is reduced to despair about the meaning of life. But as long as this despair is an act of life, it is positive in its negativity.” -Tillich
“Courage is not the absence of despair; it is rather, the capacity to move ahead in spite of despair.” -Rollo May
“The great courage is still to gaze as squarely at the light as at death.” -Camus
“One manages to get over everything, born as one is to a burrowing and battling existence; one always returns once again to the light, one always lives again one’s golden hour of victory–and the one stands as one was born, unbreakable, tense, ready for something more difficult, for something more distant, like a bow stretched but the tauter by every strain.” -Nietzsche

Rest assured, I do eventually “lose it.” I am not that strong. 😉 I cried like a baby when I was on the gurney, being wheeled to pre-op. I cried like a baby in pre-op when they were inserting the nerve block in my back, not because it hurt (it didn’t) but because it was all happening. And because like every other hospitalization, I had bonded with the nurses and doctors, I was still able to create and crochet a little, because I could make people laugh, because I could impress people with the book and my “work,” and yet at the same time, I could be in such bad shape and so precariously holding on. That this year could be so good and so bad.

As was expected, the post-surgery days were some of the worst, most painful days of my entire life. I knew that no matter how much pain I had experienced over the years, surgery would be a whole other beast. Like I said, I had read about colectomy (the removing of the colon) beforehand, from medical websites and from friends who had been through it–I knew it was going to be…awful. But I wanted to go into it knowing the nitty gritty, to not be spared the gruesome details, to not be shocked by the awfulness. When I was talking to one friend whose brother experienced complications, I asked point blank, “How many times did he want to or try to kill himself?” Her answer was something along the lines of, “he had to be restrained.” I forwarded these emails to my parents, verbally adding, “I’m probably going to want to kill myself at times–I want you to know why.”

What was the pain like? Like a hundred mallets and knives dancing around in there. Like being karate-chopped in the abdomen over and over. But there were so many pains at once: the surgery pain because I have literally been sliced and diced, other organs moved around, the migraine pain from not eating, the back pain from lying flat so much, the pain from torn unused muscles. Burning pain and disgusting bruises from twice-daily Heparin shots. Again, the choices, “Stomach or thigh? Left or right?” Felt simultaneously, it is really beyond words. That’s all I could think of when trying to describe it: this is brutal beyond words. I guess that’s why they use the 1-10 pain rating system.

I am amazed, grateful, shocked, annoyed and depressed at the fact that the human body can get through something like this. I am thankful that I am not allergic to morphine after all. It took about 2 minutes to understand morphine addiction, to experience both a numbing of the pain and a numbing of the mind, a combination that is so comforting. Because even with the nerve block, the “minimally invasive” laparoscopic surgical techniques (OMG, little cameras swimming around in there!) and the ability to press my morphine button every 8 minutes, it was all still so horrible.

The surgeon I was originally supposed to have a consult with comes by the day after my surgery, along with my surgeon and his assisting residents. I think it was the day after? I was miserable and immobile, so it must have been but those days blur and blend. In my drugged-up haze, I remember him asking how I was doing. I can’t remember what I answered–it’s possible I feebly smiled and jokingly said, “fantastic.” I do know, however, that he said with a ridiculously big smile, “You’re beautiful–you’re a con.” Ha! Compliments are nice in the hospital even when they’re lies. There are times when how I look is on course with how I feel, and other times when I look okay or even “good” but feel like hell. I’m not sure which I prefer. A few days later I remember laughing to myself at that being the first time I had ever been called “a con.” And under what circumstances…

There are so many tubes, something I was warned about but something that is nonetheless, quite shocking to wake up to. The IVs, the oxygen tubes coming from your nose, the catheter. Gosh, my first catheter. For those first 12 hours or so afterwards, there is no need to get up, as everything is either being pumped into you or drained out of you that needs to be. But they make you walk almost immediately because it “speeds up recovery.” Well, I cried like a baby, but this time down the hallway, clutching my mom’s arm and my IV pole. What’s the number for “I want to die”? Is that 10? I think I experienced 10, then. For the first 2 days, I didn’t consume anything. For over 80 hours, I was allowed to ingest 3 glasses of water total. Total. They give you this tiny sponge on a stick. The rationing of one glass of water over 24 hours almost drove me over the edge. That tiny sponge on a stick now sits inside a little vase above my desk, a reminder.

Once I made it to the 4th day after surgery, I could start to feel improvement. Though everything still hurt like hell. The nurses who remembered me the 1st day were wide-eyed at me “doing laps” around the hallways: “I saw you that first day…oh my God. Look at you now!” I still had to push the morphine once, twice, three times before getting out of bed but it hurt a teeny tiny bit less than the day before. I didn’t have to be on oxygen. I started to eat food again, soft food, but food, food that I used my teeth to chew. I didn’t have to watch my pee drain into a container attached to me. In other words, I felt more like a human.

Living with this ostomy bag, though temporary, is…interesting. It is what it is and it beats being dead, I guess. In the hospital, I couldn’t look at it at first because I was so worried I would freak out. One time, post-surgery, I lay back on the bed too quickly and I screamed out in such pain, cried and cried and realized how much more painful it was to cry now. Using those abdominal muscles, clenching, hyperventilating, gagging. I cannot cry I cannot cry I cannot cry. And I didn’t after that. And I very logically and practically promised myself that I could not have a breakdown about any of this till I was healed enough that crying didn’t hurt so much. I put it off till last night, almost a full month.

Recovery felt slow, not being able to sit up on your own for the first week or so, not being able to have 1 minute without pain, taking multiple naps a day. I spent 12 days in the hospital, discharged 4 days before Christmas. I attended all Christmas Eve festivities…somehow. I am off painkillers, almost pain-free, sitting up on my own for weeks now, down to 1 nap a day and up to 25 minutes on the exercise bike a day. Today is my 1-month surgery anniversary. It is so strange to no longer have to run to the bathroom, to sleep through the night, to eat corn, to envision a time, not so far off, when I will no longer have to take steroids, and a time that is still very far off, when I will be through 2 more grueling surgeries and recoveries. I am trying not to think about the fact that I have to go through a lot of the above…again. I am instead trying to think about when I will, 7+ years post-diagnosis, a bow definitely stretched but hopefully tauter, be able to do,…anything.

Bend with the wind and do not break

After 4 months away, I was almost scared to go to New York, scared I would fall in love with it all over again, scared that I wouldn’t. I think both happened, or possibly neither–I felt neutral and apathetic. I had gone to the doctor’s the day before leaving on a train. The timing of this appointment was not ideal, as it confirmed what I already knew–that if this new treatment I was on failed again as I tapered off of horrible prednisone, I was done. Game over. Colon removal surgery time. And even though I was feeling okay, there was a good chance it was going to fail because of my disease history.

I got in the car and pulled one of those straight-out-of-a-movie moves–I put my head on the steering wheel and cried. I would treat the upcoming trip (Philadelphia for a book event, New York and beyond) as a last hurrah, which is pretty much how I’ve always treated everything, pre- and post-illness–not in a morbid way, but in a carpe-diem way. I would do anything and everything, I would make ambitious to-do lists, I wouldn’t worry about sleep or making firm plans. Yet another instance of feeling like a ticking time bomb, and trying to pack it all in. Sucking everything I could out of life because it was always being sucked out of me.

I pretty much did everything I wanted to those two weeks, but as I crossed people, places and events off my list, collected fall leaves from every town and put them between the pages of whatever book I was reading, I came home–whether that be a friend’s apartment, a hostel, etc.–many days feeling unhappy. And the fact that I was feeling this way, after doing exactly what I wanted, made me even unhappier. Why did I feel like this? Was it yet another emotional side effect of steroids? Was it knowing that it would all soon end, because somewhere in those weeks I felt it starting to go downhill, so I knew for sure it was over? Enjoy it while it lasts–it won’t last. Can you really enjoy things when you hear that ticking?

It was a small taste of what life used to be like, flying by the seat of my pants, running around everywhere, not knowing where I’d be the next hour. It was like being a bird finally let out of the cage but told that I must return, like those patients in the movie Awakenings. It’s almost easier to accept one’s limits and live within new boundaries, to tell yourself that this shall be your new sense of normal. And yet, that is exactly what I always hated about all of this, the forced changes, this new person you had to get used to being, this life that you never chose. It’s what the literary critic Anatole Broyard said so perfectly, “It may not be dying we fear so much, but the diminished self.” I always told my doctor something to that effect, about the difference between being alive and living. If I ever got to the point that I thought I wasn’t doing the latter, I’d end it all because that, to me, would be death.

Looking back, not just on this trip but on these 6 years of being chronically ill, I can’t help but think that so much of what I have done has been to prove, to myself and myself alone, that I was, indeed, living. One giant to-do list that I compulsively added to. Accomplishing things just because I could, getting my foot in the door just because I could. All sincerely done, all things I was interested in (I think?), but done nonetheless so that I would hate this illness less. Making use of every minute of every day in the best possible way. Paying my phone bill solely with money made from selling crochet safety cones with viking hats, knitting a scarf entirely while waiting in doctor offices. Appearing so ambitious and driven to the point of frequently hearing people say that my ill but full life made them feel lazy and unaccomplished. (Gee, thanks for the extra dose of Catholic guilt). All the while I was just building up proof that I was living so that I could not rationally arrive at a decision to end it all, because, look at everything I’m doing! A diminished self? Doesn’t appear that way.

When I was younger, I used to prepare for injuries and conditions by pretending that I had them. I’d brush my teeth with my eyes closed, I’d hobble down the steps on only one leg, I’d practice cursive with my left hand. I never had fear about having to use these skills in the future, I wasn’t even particularly paranoid about illness, but I wanted to be ready. I didn’t want my life to be so drastically altered if something terrible befell me. Every time I got novocaine on one side of my mouth during teeth extraction (and I had a majority of them pulled because my baby teeth did not want to come out on their own), I decided to practice having an “Elvis lip.” For that hour before it wore off, I moved the non-novocained side up and down. I can still do it till this day, because I strengthened my lip muscle on one side! Everything was an opportunity, an opportunity for an experience, to develop some skill or talent, to learn something, to get better at something. Neither good nor bad, but just things that happened, and something in me, very automatically and without articulating, said, “make the best of it.” The articulated phrases would be picked up later–when life gives you lemons, play the hand you’re dealt, live the questions.

Well, I never prepared for living with a chronic disease that 6 years later would lead to me having to get my entire large intestine ripped out. I definitely did not “practice” for what ulcerative colitis would do to me on physical and emotional levels, what it would take away from me. And here we are. Having exhausted all drug/treatment options, surgery is no longer a choice but a must. Or it’s game over. But even though I don’t have a choice in these matters, I am still running it all through my head as if I do, i.e. I guess I haven’t arrived at Kubler-Ross’ Acceptance stage yet. And this is because I cannot ever accept how it will change me. The hospital always threatens to turn me into a diminished self, a body that is merely alive, sometimes not even taking in any food for days, and so dependent on machines and tubes. Which is why I feel more driven than normal in there, crocheting till my IVs bleed, really looking at the “art” on the walls, getting to know the nurses, reading complex books. This time, more than ever, that threat will loom, because I will experience unimaginable pain and I know for a fact that I will not be able to sit up, to walk, for days. I will be stuck with my thoughts and the physical horror of it all. Thinking and feeling but not doing. I will again not have any choices and will have to accept that my life as I know it entirely depends on getting through all of it, and as a diminished self. I hate the thought of it. Absolutely hate it.

The first year I was sick, and spent a week in the hospital during the prime of autumn, I thought about this place my parents took us to called Cook Forest. I think we went every fall, climbing to the top of the fire tower that was there, hiking around, collecting leaves. I hadn’t gone since before I was sick, and for whatever reason, I planted in my head the desire to get back there, that if I ever got healthy, I’d go to Cook Forest again, collect leaves, climb that fire tower and look out at the Pennsylvania mountains. This year I finally did it. While there, I learned from my mom that my grandma’s uncle took a similar excursion with a health-related component (he had polio). He decided he wanted to go to Cook Forest and get a hemlock seedling. How funny and odd, to think that this I-have-to-go-to-Cook-Forest desire could somehow run in our blood. While in New York City this time around, she emailed me the whole story, which is perfect in so many ways and which I hope will help me in the upcoming days:

…one leg was longer than the other and one arm was stronger than the other. He was determined to walk again. To push him to this end, his parent’s bought him a bicycle. Mom said he would get on it and fall off over and over. He kept trying and mastered it. When he got older, he bought a motorcycle. He did go to Cook Forest and he did indeed bring back a hemlock seedling. He planted it beside my side porch. At that time this address was his home. You are aware how beautiful and tall it now is, soaring above the house’s rooftop. There is a lesson in going with the flow from hemlock trees. Someone once said we can learn from hemlocks. When there is trouble and strife and we do as hemlocks do, we bend with the wind and do not break. However if we fight against troubles and look at the dark side, we are like a stiff tree that doesn’t bend but breaks with the opposition. So I look at that hemlock, knowing its history and learning to bend with the wind and carry on.

In the interest of not completely breaking, I hope I can think of myself as “bending” rather than as a “diminished self” through this all.

My Pumpkin Cookies

I frequently rolled Halloween fun into birthday fun as a kid, with my November 2 birthday and the bonus of attending Catholic school, which meant always getting November 1 off. But even when I planned a non-Halloween party (like my 10th birthday at Arsenal Bowling Lanes b/c that’s how we rolled (!) in those days with our weekly bowling lessons), I always got the above pumpkin cookies, made by both my mom and dad. The teamwork cookies! They are a very butter-heavy spritz cookie, sandwiched together with chocolate frosting and topped off with a vanilla frosting stem. (Mom does the cookie and chocolate part, and my cake-decorating-expert dad does the green top). But all is not rosy when it comes to these cookies–because of the temperamental spritz gadget, they may have, more than once, ended up in some errr maternal cursing.

I have never made them in my life, never will, and had never even looked at the recipe until this year, but it has been an annual tradition since I can remember. Every time I look at the above picture, I think: it’s not possible to be happier. Not that one can’t be this happy again, but that the look on my face is 100% pure happiness. Oh to be four years old…

When I left Pittsburgh after high school, the cookies showed up at my college mailbox, and four years later, at whatever New York City apartment I was calling home. Like in the above photo! You know what, I think I look just as happy. Yes? Anyway, I always ate them in a disgusting small amount of time (and I just found out the cookie dough alone has 3 sticks of butter eeeeek!) and was looking forward this year to actually “documenting the process.” Don’t they remind you of the Warhol flowers when just the orange parts?

Some pics:

There’s no place like home.

You can never have enough Witch Craft links?

Did some book-signing at Seattle Barnes & Noble and Border’s. It’s all about those stickers!

I hope that is how the saying goes…

Pike Place Market flowers–picked ’em up my first morning there

I went to Seattle for the Plush You! show, despite not feeling fantastic once again (9-day streak grrrr), but you know what? I got better while there. Who would have thought…maybe it’s because I hung out at Cakespy and made Jessie’s Awesome Overload: 50 moments from the Sweetest Week ever. Or from all the cupcakes, coffees, cinnamon rolls I had. Or the visit to the breathtaking Arboretum?

While in Seattle I putzed around Chinatown and had a Proust-madeleine moment when I got red bean cakes, i.e. I started thinking about New York and missing it. Anyway, I went to Kinokuniya, one of my favorite “chain stores” and where Witch Craft is being carried (!). I had to see for myself, and lo and behold, there it was! Woooooow. This nearby group of people started talking to me (what? you’ve never seen a book author take a picture of a smiling crochet safety cone in front of the book, which *it* has nothing to do with?!) and decided to buy the book in about .3 seconds purely because I was there. And I signed their copy. Witch Craft FTW!

After a brutal red-eye (my first, I was curious, never again), I safely landed back in the ‘burgh where I slept off the turbulence, hours of screaming children and general blitzed feeling. And then, Pittsburgh Craft Collective and I Made It! helped throw me a Witch Craft happy hour. Recap is here. The sweet Tin Front Cafe in Homestead made this ridiculously awesome Halloween menu and there was some serious vampire bite necklace and marshmallow skull crafting going on. Speaking of Pittsburgh, I did this little virtual Q&A with the “Books N’ At” blog, which combines Pittsburgh and books, of course!

I had no recollection until seeing this picture that I was ever a Crayola crayon box for Halloween. None!

Moving on east a little, Geekadelphia has a book giveaway, but you must comment with your favorite Halloween tradition! Oh my, I have so many, not that I’m eligible (ha): bar-graphing Halloween candy types with my sister (NERDS!), going pattern-shopping for costumes, getting my special birthday Halloween cookies every year (more on this later), and since living in NYC, going to my *favorite* event in the entire world.

Lastly, let’s get crafty, shall we? The Chicago-based girl who blogs at such a book nerd not only decided to review Witch Craft, she decided to have an all-out crafty day with friends to try out some of the crafts because, “After all, craft books aren’t like novels. There’s no underlying meaning to be debated within their pages. They’re instruction books, and to see if they’re any good, they need to be tested.” This post is a great read and I love the “kudos” at the end to Margaret and me. 🙂