Alicia Kachmar's Blog
September 13, 2014
“She laughed. ‘It won’t last. Nothing lasts. But I’m happy now.’
‘Happy,’ I muttered, trying to pin the word down. But it is one of those words, like Love, that I have never quite understood. Most people who deal in words don’t have much faith in them and I am no exception–especially the big ones like Happy and Love and Honest and Strong. They are too elusive and far too relative when you compare them to sharp, mean little words like Punk and Cheap and Phony. I feel at home with these, because they’re scrawny and easy to pin, but the big ones are tough and it takes either a priest or a fool to use them with any confidence.”
― Hunter S. Thompson, The Rum Diary
The last time I wrote here, in March, I had just been accepted to all my nursing programs, but had decided on Penn for the combination BSN-Hillman PhD program. I had recently been in the hospital, which always makes me very fatalistically rethink everything and want to crawl into a little ball in the corner of a room forever. I babysat my “little one” in Pittsburgh, unhealthily worked on Doll Despair (haha), took a psychology course, traveled to Indiana to meet and see my British sickypoo email friend get married, and tried to imagine what life would be like in Philadelphia.
I traveled to DC for IBD Day on the Hill, for the first time, to meet other CCFA members and speak to Senators and Reps about Crohn’s/Colitis research/funding/Congressional caucus. I met some incredible people, including a retired Philadelphia nurse with a sick college-aged son. She told me I was a “ray of light sent straight from God” and that I was a “stoic and strong role model.” (ha)
I went to Baltimore for the Graphic Medicine conference at Hopkins to meet my author/professor/life idol Arthur Frank, whose amazing books have probably taken up half my posts here for the last 4 years. I wrote to him last summer (2013) for the first time, with a long “thank you” note because it just felt right to do so; my hospital nurses and him had the most to do with my decision to go back to school for nursing/Hillman PhD. We became email buddies after that, so I was excited/nervous to meet him in person, at a conference at which he was a Keynote speaker. After the conference, we had a several hour breakfast and he agreed to be my “third PhD mentor” from afar. It would take me an entire blog post to properly describe this weekend. I will forever treasure and be motivated by the messages he wrote in my books that you can see below.
I spent about two weeks babysitting in NYC, with one day off that I filled with much needed solitary time in Coney Island, Brighton Beach, and Manhattan Beach. For Memorial Day weekend I stayed in Long Island, with the girls (now 20-somethings!) I “nannied” in Brooklyn and Manhattan so long ago.
I sat in their backyard, reading Norwegian Wood and then one of the lesser known Tennessee Williams play, thinking again about an art project of sorts that I think about a lot but can never actually begin–I don’t even have a medium in mind! It’s my broken person/pieces I alluded to in this last post, from a really brutal hospitalization where I felt my spirit (and body) breaking into a million pieces. Someone once asked me, “How did all of it not break you?” And I laughed: “It DID break me! Oh my God, trust me, it broke me. Over and over and over again.” Into so many pieces that I naively thought could be put back together like a jigsaw puzzle. But they’re altered, shattered, too different, or can’t be found.
I don’t know what this would look like because I can’t conceptualize it beyond a human figure carrying a lot of pieces/memories/experiences that will “fit” together in some way to make something else. I think of the part in Arthur Frank’s The Wounded Storyteller: is it possible to be successfully ill? What about successfully broken? (Is it the same thing?) It’s beyond the point of trying to heal those open wounds and stop the proverbial bleeding; I’m dealing with scar tissue that is never going to go away. And that scar tissue, from my surgeries? It’s what’s persistently contribution to ongoing inflammation (pouchitis) and my “occult” blood loss. Which is fitting.
I see that human figure, me, trying to hold and balance all those pieces in some strange Rube Goldberg contortionist configuration. A Calder mobile full of seemingly patternless movements but there’s still something meaningful and beautiful there. A startling tap on my shoulder and I would drop all those pieces.
Which reminds me of another analogy: I hate that trite aphorism, “what doesn’t kill you only makes you stronger,” because I feel the opposite in terms of my health. It’s so much weaker for everything that didn’t kill me! I imagine a common object like a glass precariously sitting on the edge of a cliff. A small tap or a large shove results in the same outcome: it falls over the cliff and shatters. I sometimes think that if I broke a finger and had to go the hospital I would totally lose my mind in a “last straw just can’t handle anymore” kind of way. There’s a threshold but you can’t know where it is exactly until you cross it.
Related to that aphorism but in a pathophysiology way because science and nursing are my entire life right now: heart failure can occur after many years of increased workload. The heart muscle actually gets bigger and technically “stronger” if you just consider sheer muscle mass, squeezing out the proper amount of space once taken up by the chambers. More of this muscle tissue and pumping are needed for survival. The heart is working so hard! Too hard. But it “works” for a while. Until it completely wears out. All those extra muscle cells, that you would think =STRENGTH, don’t matter. And the heart just stops. So, sometimes what makes you stronger just ends up killing you nonetheless, and somewhat suddenly at that.
This program is one of the most challenging endeavors I’ve ever undertaken and I thought about quitting 3X/week this summer just b/c of exhaustion and reaching a saturation point for knowledge. It’s hard to explain what it’s like to learn about so many of the illness-related things I’ve been through, in a classroom setting, where the instructor is always talking about “the patient” as some anthropological “other,” but I am that patient and “other.” There were many lecture slides I didn’t have to study at all–lists of drug side effects, symptoms, GI/anemia/pharmacology lingo–because it’s either burned into my memory from “living it” too many times or I’m still living it now.
While I had tears behind my eyes during the colitis/Crohn’s lecture, I didn’t cry; but I totally cried my eyes out when I read this in one of my textbooks: “GI disorders may have profound effects on the psychosocial functioning of the affected individual. The stress of coping with a chronic, disabling illness may result in psychological trauma; in addition, any type of illness represents a threat to the integrity of the person. Individuals experiencing a chronic GI disorder may exhibit the psychological effects of such threats.”
“In life man commits himself and draws his own portrait, outside of which there is nothing. No doubt this thought may seem harsh to someone who has not made a success of his life. But on the other hand, it helps people to understand that reality alone counts, and that dreams, expectations and hopes only serve to define a man as a broken dream, aborted hopes, and futile expectations.”
– Jean-Paul Sartre
March 19, 2014
I’m still somewhat in a state of shock, but a good state of shock at that: I was accepted to ALL of the competitive nursing programs I applied to, including my top choice, the highly competitive combination accelerated BSN and Hillman Scholars Ph.D. program at the University of Pennsylvania. (Hello Ivy League! And that’s where I’m going!!!) Just two-and-a-half years ago, I sat in the hospital on my 30th birthday, having emerged from the 3rd and final intestinal surgery; for the better part of the year, I had casually tossed around the idea of returning to school to become a nurse; I had started reading medical sociology and philosophy books; I tried very hard to “recover” from too many years of emotional damages from chronic disease; I realized I had survived. Not unscathed, but still. I told people I was planning to become a nurse, and the idea was poo-pooed by so many friends close to me. Which sent me into a two-week stay-in-bed depression–because I was too sensitive or foolish or vulnerable at the time? The sense of defeat after battling a disease for 6 years, being told what to do by it and doctors was too much for me. Now I was surrounded by people also telling me what to do with my life. Fortunately, all this negative sentiment on the part of “friends” helped me fine-tune my beliefs about nursing and my future. I immediately started to jot down ideas for my personal statement and really considered the why behind wanting to enter the field of nursing. So, thank you, all the supporters and non-supporters alike.
I read everything I could about the top nursing programs while taking 1-2 classes a “semester”; I developed more surgery complications during this time, resulting in more hospitalizations and treatments; I looked at the top 10 schools and whittled the list down to only the east coast ones, mostly due to wanting to be close to home in the event of unpredictable health crises, which were unfortunately happening all too often; I realized that I would forever be a patient to several doctors and that “healthy” was a state I would never reach. Ever. But it didn’t matter, it doesn’t matter, because every single day I passionately wanted to become a nurse and a nurse scientist, and even more determined, I marched in that direction.
I wish I could remember the exact day I discovered the Hillman Scholars Program at Penn. I do remember feeling THIS IS IT when I read about it, even with its “at most, 6″ acceptance rate. Daunting numbers, yes, but hey, I would try to be 1 of those 6. It was somehow easy for someone like me, who never operated on normal timelines, to think about committing the next 5 years of my life to such an ambitious and rigorous program. Not wanting to wait another year to apply, I took a ton of insanely compact 6-8 week classes that consumed my entire life and stretched the limits of my brain. (I had never taken a college-level science course before I was 30 years old!)
Armed with my long list of “academic objectives and professional goals,” I convinced the Dean of Chemistry at my community college to let me bypass three prerequisites so that I could take the advanced chemistry course (also a semester’s worth packed into 6 weeks!) required for Penn. I ran around campus getting signatures, much to the surprise of the Registration folks who would repeatedly say, “We’ve never seen this. You don’t meet any of the requirements and she’s/he’s letting you into this class?” To which I would reply, “Yes. See the signature?” (Mind you, I have a history of subverting the system within the system: my undergrad years were full of meetings with professors who said, “you want to write about WHAT??” and me getting the green light even when my topic of interest swerved so far from the topic at hand, like when I wrote all about Montessori elementary school education in my Secondary Public Schools seminar…I got an A on that paper even though I “didn’t follow directions” hahahahaha). In my experience, academic passions and dedication go much much farther than playing by the rules and following directions.
Last summer, I was nearing the end of my prerequisites (that 6-week Chemistry class!) and of course I landed in the hospital for a good five days. On the verge of having to take an incomplete but determined to not only pass but get an A, I spent approximately 16 hours a day (after discharge) for days studying quantum mechanics, thermodynamics, and so many other abstract concepts that I had no foundation for whatsoever. (You should SEE the stacks of papers/math problems I had to do!) And I got an A. I then gave myself 4 weeks to study for the GRE, scheduling the test for a week where my anemic self would be the least anemic, i.e., where my brain would function its best on never enough oxygen/bloodflow. And I did something I hadn’t in quite a while: I wore one of my adult diapers on the day of the test because I was so terrified that disease and/or nerves would interfere with my life yet again on this all-important day. (You aren’t allowed to leave the room except for 1 scheduled 10-minute break during 4 hours of testing!) But even that scratchy diaper feeling that used to be part of my daily life for years didn’t bother me. Because I was getting closer to my goals and so what if I was wearing a diaper doing it…SO WHAT!
Both the easiest and hardest part of these two years of working towards nursing school was probably sitting down to write the personal statements/essays. I say easy only because for the first time in a decade, I had such a profound sense of direction and intense, genuine drive. In a sense, I had been writing those essays in my head since 2005 when I got sick. Although cliched and trite, I was truly writing from the heart. Which is where the “hardest” part comes in. I re-read all the disease blog posts here as well as the ones in my personal journals. I cried pretty much the entire time I read them and also when I wrote and re-wrote the essays. I’ve come to terms with my bcrying-while-writing, acknowledging that it’s always going to be like that, because these years have been so challenging and reading my writing is re-living it like it happened yesterday. Sometimes I can even “feel” it hurt where my surgery scars are, even though I know it’s just phantom pain. It all hurts, in some way, all the time, and I will never like or love writing about it because that hurt is exacerbated.
I’d re-read my private handwritten journal entries from the first couple of disease years, when I was so bitter, depressed, and angry about it all. Quick sentences like “I draw no strength at all from my illness, I only experience the weakness of being IN it, consumed BY it.” “I’m so scared I’m not strong enough. (I’m not!) I don’t think I can survive much more of this. My will power was diminished in the fall.” I want to go back in time and hug that person that I was then, a girl in her early twenties bombarded with too much, and tell her that it’s somehow going to “be okay.” Now, when I think about everything that has happened and everything that is to come, it all feels so logical and right. What else would I possibly want to do with my life than this, having experienced everything that I did?
Tonight as I was reading my Psychology class book on “Emotion, Stress, and Health,” I came across some pertinent points that are textbook-y but true. One of the three coping mechanisms for problems that “cannot be solved” such as “developing a chronic illness” is:
“Learning from the experience: Many people emerge from adversity with newfound or newly acquired skills, having been forced to learn something they had not known before. Others discover sources of courage and strength they did not know they had. Those who draw lessons from the inescapable tragedies of life, and find meaning in them, thrive as a result of adversity instead of simply surviving it.”
And also, “Eastern and Western cultures tend to hold different attitudes toward the ability and desirability of controlling one’s own life. In general, Western cultures celebrate primary control, in which people try to influence events by trying to exert direct control over them. If you are in a bad situation, you change it, fix it, or fight it. The Eastern approach emphasizes secondary control, in which people try to accommodate to a bad situation by changing their own aspirations or desires: If you have a problem, you live with it or act in spite of it.”
In one of the 1,000-word personal statement essays I had to write, the one that spoke specifically to the Hillman Scholars program/Ph.D., I included the following:
“While hospitalized, I often wrote in a journal until my veins were too blown to do so or until I was too upset to put into words what I was feeling, physically and emotionally. The last time I was in the hospital before I had to undergo a year of three difficult abdominal surgeries, I only wrote three sentences in total: ‘Can a spirit be chipped away at? If so, mine is. Goal is to one day be able to pick up the pieces and either put them back together or make something new with them.‘ It took me two years to realize that putting these pieces ‘back together’–my concept for repairing my emotional state so that it precisely resembled some former, intact emotional state–would be nearly impossible. It took me another year to decide that I didn’t want to put these pieces back together at all, but rather I wanted to make something new. I consider a nursing research doctorate to be my ‘something new.’”
I cannot wait to make something new when I begin school this June at the University of Pennsylvania!
August 18, 2013
Two years ago, while attending my cousin’s high school graduation party, I was talking to one of my doctor uncles about books and he recommended I read The Anatomy of Courage. It’s written by Lord Moran, a physician and medical officer in WWI, who later became Winston Churchill’s doctor during WWII. Published in 1945, this book called much-needed attention to the effect of war on soldiers, 30 some years before the term “post traumatic stress disorder” (PTSD) was even coined. (I believe “shell shock” was the term in use). Soldiers were returning home, with a range of physical injuries, but even if these injuries healed, the humans that remained were severely broken. Lord Moran proposed that these soldiers had run out of *something* akin to mental stamina, drive, emotional energy, courage. The latter is obviously the prime term of interest, but he parses it in a way that it fortunately doesn’t get reduced to some sentimental connotation.
I was six months out from having my colon removed, was living with an ostomy bag, and still had 2 surgeries left, when my uncle recommended this book. I had also just returned from living and working in South Carolina for 5 weeks, but being back in Pittsburgh meant pre-surgery appointments and trying to somehow mentally prepare after hearing my surgeon say, “the 2nd surgery will be as bad as or worst than the 1st.” (The 2nd surgery *would* end up being far worse than the 1st in terms of a long, painful recovery and multiple complications, but they weren’t even predicting those bumps in the road at this point). My uncle and I must have been talking about this, because I was trying to articulate that I felt really spent already, drained of the…whatever you want to call it…mental stamina? Courage? Lifeblood? Ability? To get through it. That even if my body could get through it, some “I” could not get through it. This scared me. A lot.
Everyone is familiar with that maxim, “What doesn’t kill you makes you stronger.” I unflinchingly believed that for the first few years of my disease, before I started to consider those words in a literal physical sense. The years of disease and medications and treatments? No, they didn’t kill me, but they definitely made me, in terms of my physical body, much weaker. So I proceeded to interpret this maxim, particularly the word “stronger,” with psychological or emotional underpinnings instead. These years made my body weaker, but my mind/spirit stronger. Not in spite of getting through it all, but because of getting through it all. I believed that for a few years too. When my uncle suggested reading The Anatomy of Courage, I had stopped believing even that. I felt weak in the body and weak in the head and was absolutely terrified of *anything* bad happening to me health-related, even something “normal” like breaking a bone or getting the flu, because I felt “done” in my head. Just “done” in the sense of having run out of that *something* necessary for getting through subsequent health challenge, but I couldn’t explain why I felt that way, how I got there, or when it happened. But I felt it.
I cannot possibly imagine what it is to become a soldier or fight in a war, but for what it’s worth, I am fascinated by and in awe of those that do. While there is not comparable physical overlap between what a soldier is going through when at war, and what a person is going through when faced with serious chronic disease, I think there is overlap on a psychological/emotional level. I didn’t read The Anatomy of Courage for another 18 months, partly because I was scared this book would tell me what I already felt, that maybe I should just recognize my dwindling courage supply and admit defeat.
In The Anatomy of Courage, Lord Moran sets out do the following: find out how courage is born, how it is sustained, and what can be done, if anything, to delay or prevent its “using up.” This last one is what my uncle talked about, the idea of there being a finite amount of “courage” in a human being, that it can be used up and and cannot be replenished. This is something I had independently, and at times subconsciously, been thinking about for many of my ill years: my body would be so broken but not “done,” whereas my spirit was broken and did appear to be/feel “done.” Like I had reached a tipping point at the top of the “what doesn’t kill you makes you stronger” bell curve and I was on my way down.
In the first few pages, he writes:
“How is courage spent in war? Courage is will-power, whereof no man has an unlimited stock; and when in war it is used up, he is finished. A man’s courage is his capital and he is always spending.”
“There seemed to be four degrees of courage…: men who did not feel fear; men who felt fear but did not show it; men who felt fear and showed it but did their job; men who felt fear, showed it and shirked.”
(all bolded quotes are Lord Moran’s words and from this book)
Moran isn’t certain the first degree can exist, that perhaps there is no such thing as “fearlessness,” but rather something like the third degree, the courage of control.
“Do they really feel less than we do or have they attained a peak of control which is beyond our reach?”
This is key! And I think this is what happens after so many years of chronic disease; one/I fine tunes this sense of control to such an extent that onlookers equate it with fearlessness or a substantial and potentially limitless amount of courage. “How do you do it??” they will ask. The only answer to this, other than a shrug of the shoulders, I can ever come up with is: I don’t have a choice, and in regards to the experience of disease, I feel it, but I don’t think it. I feel ALL of it, illness permeates every inch of my body in a physical way, but I try not to let it permeate every inch of my mind. This is the “control” mentioned above. In this book, Moran writes, in regards to a soldier exemplifying this control:
“…a way of looking at things which alone makes it possible to carry on. His business is to become insensitive, to give up thinking. The wise man lives only for the hour…. He looks just like a boy who is beginning an illness with the shivering attacks, and in the frankest way he will tell you he is just petrified by the business. But I don’t worry much about him, because in the intervals his mind is quite normal. He neither thinks too much of what is gone nor of what may come. He just gets as much out of life as he can. While this lasts he won’t crack however much he is scared.”
“But sometimes the shadow of fear drove men in just the opposite direction, into sheer recklessness. There is drink, a last crazy effort to get something out of life while it lasts. Was this fellow breaking because he was drinking or was he drinking because he was breaking? Was alcohol a cause or a symptom of defeat? Not that it mattered, for once that game began the man was done.”
What (sometimes just temporarily) delays the loss of courage and journey to recklessness and despair?
“In the presence of danger man often finds salvation in action. To dull emotion he must do something; to remain immobile, to stagnate in mind or body, is to surrender without terms. Whereas movement, work of any kind, helps to deliver him from those feelings which are traitors to his better nature.”
Again, this is that idea of “courage of control,” or how I always thought of it, “I feel it but I don’t think it.” When I think back on all of my disease years, they are somewhat unbelievably jam-packed with “action” and “movement,” with few instances of stagnation. Moran found that soldiers who were engaged in active warfare, like in a fighter plane, were able to keep going longer than those in observation roles or “on watch.” It’s not a coincidence then that the concept of PTSD comes “after” or “post”; the action and commands are gone and there is only time to think and analyze and make choices.
“Courage is a moral quality; it is not a chance gift of nature like an aptitude for games. It is a cold choice between two alternatives, the fixed resolve not to quit; an act of renunciation which must be made not once but many times by the power of the will. Courage is will power…in Gaelic hope and courage are the same word.”
With chronic disease, sometimes I do have that “fixed resolved not to quit,” but other times it’s a less conscious addiction to action/movement, i.e. an addiction to distractions. No matter how productive, pragmatic, or fulfilling, they are just distractions serving to prevent thinking about disease “stuff.”
…as Hippocrates taught, there is a certain antagonism between physical and mental pain. In a battle somehow the horror of this business of war is not felt. Nature has the stop on; perhaps we are half-doped to come through it all. In this war, Critchley has noticed in sailors the same mental viscosity–a kind of blinkers effect–while the danger lasts, so that only in retrospect does the full force of the ordeal emerge.”
Only after reading the above did I finally understand that, something related to PTSD happens with chronic disease, this idea of being half-doped (sometimes literally!) and not feeling while IN it. Every time I am in the hospital, I go through the motions as if on autopilot and don’t “lose it” too often because I have programmed myself to “come through it all.” But when inevitably “only in retrospect does the full force of the ordeal emerge”…well, it’s awful and overwhelming. Sometimes this full force hits me a week later, a month later, even years later. Driving past my hospital and I have to pull over because I feel paralyzed. Declining ice in a drink because it reminds me of subsisting on 1 cup of ice for days in the hospital. Finding a salt packet in my purse and remembering that I’d add them to my “meals” of vegetable broth and lick every salt granule off the bottom. Not being able to look at jello without getting nauseous. Hearing the succession of beeps of a truck backing up and comparing it to the beeps, and the same length of silence in between of the IV machine. Vehement opposition to fluorescent lights.
Before I read this book, before someone said to me that what I was feeling was a kind of PTSD, I just got mad at myself for reacting in “dramatic” ways. How could a mere salt packet reduce me to tears for a half hour?? I hated it. And I kept thinking, I got through it. I survived. It’s over. What’s wrong with me? Why am I not over it yet? When will I be completely over it? I recently read The Yellow Birds, which is Kevin Power’s recounting of his time in Iraq and debilitating PTSD: “My memories would seem closer the farther I got from the circumstances that gave birth to them.”
“Can it be said that we are defeated by our own thoughts? Are we not most fearful often when there is no danger?”
I’m unsure of the context, but Moran quotes Thomas Hardy: “More life may trickle out of men through thought than through a gaping wound.”
So what to do, when thinking and thoughts cannot be avoided?
“When we did think, we lived in the past, for it was clearly unwise to live in the present. We could only cheat our present distress by a flight into other times, away from all the dreary tribulations of the passing hour. Only humour helped. Humour that made a mock of life and scoffed at our own frailty. Humour that touched everything with ridicule and had taken the bite out of the last thing, death. It was a working philosophy that carried us through the day, a kind of detachment from the ‘insubstantial pageant of the world.’”
It’s the same for me, with disease: humor is employed, or an attempt to time-travel out of the present, with varying degrees of success.
The words chosen and the semantics involved, when people talk about disease, are often characterized by war terminology: fighting, battling, winning, losing. The Arthur Frank books I’ve read and written about before on this blog have touched on this. While Frank doesn’t exactly agree with this way of speaking or talking about illness happening within, I’m not sure where I stand; the emotional parallels I have found in the book I just wrote about in this post definitely add some interesting elements to that debate.
I also don’t know where I stand when thinking about Moran’s belief that one can run out of courage, without the option of refueling. I don’t want to believe it, you know? Because there are too many times that I feel so close to running out. How close to that threshold am I? All of the above questions and observations, combined with my recent 19 months of nursing prerequisite science courses, remind me of the making of and administering of vaccines. By definition, vaccination is artificial active immunity. The vaccine usually consists of a virus that is either inactivated or live but modified to stimulate the immune system just enough to destroy the virus and remember it. How much of the inactivated virus is necessary for properly stimulating a response? Is there a quantifiable threshold or tipping point? Healthy people usually react to the live versions (which last longer, immunity-wise) in a safe and orderly way. People with less than stellar immune systems like myself, can’t get the live version of the flu vaccine, for instance, because even though it’s modified, it might be strong enough to wreak serious havoc, potentially fatally. How much of this live version would be too much for the compromised immune system? That threshold is presumably different for different immune systems.
There is a fine line then between a vaccine literally encompassing “what doesn’t kill you makes you stronger” and just flat out killing you. Being able to identify that threshold would be the end. Perhaps it is the same with courage, will power, hope: you try to stay as far from that threshold as possible, even though you don’t know where it is. And maybe it doesn’t even exist, unless you make it exist out of fear. Lord Moran writes:
“A lost battle is a battle that one believes lost.”
In lieu of wanting to definitively “win” the persistent battle in my mind (and eradicate the possibility of any future mind battles), I would like to believe that I will never succumb to the sheer power of my thoughts and definitively lose.
March 25, 2013
I became email “pen pals” with Rose in the very early years of being sick, after a mutual high school friend put us in touch. We were both young and driven twenty-somethings living in NYC and dealing with serious diseases. We wouldn’t meet for a year or two because one or both of us was too sick; we lived only a 20-minute walk from one another. She kept a blog called “Cancer Confessional,” and then later when she relapsed, one called “Cancer Carnival.” Her “kid cancer” always placed her on a pediatric wing at Sloan-Kettering, where the walls were colorful and decorated, and there were plush animal-sewing kits. I’ll never forget walking into her room, not thinking she was a crafty gal, and seeing her sew…what was it…a giraffe or dragon. WHAT!!!
We were never able to hang out as much as healthy friends would have, but that email correspondence, which was sometimes daily, was without a doubt, responsible for keeping me going. Sure my doctors kept me alive, and my mom and boyfriend at the time were so very important to preventing me from…giving up in a final way. But Rose understood. She got it. Our diseases were so different in physical ways but in emotional? So similar. We sent each other honest and raw emails about what we were thinking as well as “creative writing” pieces that both channeled and articulated sad/angry energy. Although it wasn’t easy to read or write these emails, I looked forward to them every day.
Today I’m going to New York for a week while Rose is living at Sloan-Kettering and receiving treatment for leukemia, a “side effect” of her past chemo treatments. I cried for three hours when I first got the email written to me and one other sicky-poo, subject line “bad news” and “you are my two best friends with crazy illnesses. I love you both. I think I’ll feel a little better knowing you know somehow.”
I didn’t get the chance to take proper photos, but something I want to do for Rose, with your help, is to crochet as many happy smiling white blood cells in the name of positivity and healthy hematopoiesis (blood cell production). The pattern is really simple:
(Make 2 of below)
With a G hook, ch 2:
Make 5sc in 2nd ch from hook (don’t join).
2sc in each sc (10 sc).
(2sc, sc) around (15 sc). Sl to next and finish off, leaving a long tail on one of the circles made.
Sew together until almost closed, stuff with fiberfill, and continue to sew closed.
SEW ON A HAPPY FACE!
If you just do the crocheting, I’d be happy to sew the face on. You can give them to me in person if you’re in Pittsburgh OR mail them to me:
1021 Duffield Street
Pittsburgh, PA 15206
Email me at email@example.com if you have questions! I’ll write a lengthier post soon…hopefully with some finished smiling white blood cells!
January 30, 2013
After writing about Part 1 of Arthur Frank’s At The Will of the Body here, I was thinking I’d be writing this Part 2 as healthy-ish Alicia and not in-the-thick-of-illness Alicia. Sometimes I think this is somehow “better” though because it challenges me to really believe and stick to what I’m writing, when I’m so very much IN it. Before I turn to my beloved Arthur Frank book, however, I want to mention what’s going on with my ever precarious state of health. Back in June, after months of feeling anemia symptoms and then a few more months of doctors trying to figure it out, I learned that my body, specifically my small intestine, which is healthy but reconfigured, does not absorb iron from food or pills. I wrote about all of that here. It is a kind of iron-deficient anemia that can only be treated with intravenous iron infusions in the hospital, i.e. it doesn’t matter how many steaks or iron pills I ingest as I won’t absorb any of the iron, and therefore I cannot make blood. At best, they thought I would have to get these 4-hour IV infusions 1-2 times a year…but forever.
In August, two months after that first iron infusion, I started getting leg cramps (“charley horses”) frequently. I hadn’t been able to smell anything since around this time too but I’m not sure if that’s related. (Not having a sense of smell for 3 months was strange but I got used to it! ). And I felt like I either had “allergies,” a cold, or sinus issues from late July/early August through October. And then I started feeling the usual anemia symptoms: perpetually fast heart rate (120+ at rest), out of breath after walking short distances, no color in face, cracks at the sides of lips, etc.
When I told people I was anemic or “had anemia,” most said, “does that mean you feel tired all the time?” Well, yeah, but that’s not exactly how I’d define the scope of anemia! Anemia is the most common blood disorder and there are actually more than 400 kinds! There is always an underlying reason for having anemia, which is defined as “a decrease in the number of red blood cells.” This could mean 1 of 3 things: you are not making blood, you are losing blood, or your blood is destroying itself. Or a combination of these. I was often anemic due to gradual but substantial blood loss on account of colitis. My body was still making blood, but it was losing it at the same time. Now, with this new iron-deficient anemia I have, my body just stops making blood because it needs iron to do so. (And I also have internal bleeding). Red blood cells only last for 120 days, so they are naturally and constantly dying off in everyone’s healthy or not healthy bodies, and new ones are being made. Why is blood important? Because the red blood cells, specifically the iron-containing protein called hemoglobin, are responsible for transporting oxygen throughout the body after it hits your lungs and for transporting nutrients, also throughout the body. When there isn’t enough blood, *everything* is affected.
What’s interesting about anemia is that the body is smart in making do with a diminishing supply of blood. The extraneous things seem to be affected first: nails get brittle, ears have ringing sound, legs get cramps, digits and feet get tingly when at rest. But these symptoms, though annoying and/or painful, don’t halt the body’s necessary functions in the beginning stages. “Mild anemia” may not have symptoms at all because the body is compensating without you even knowing it. A few days or several weeks can go by before additional symptoms appear. I start to notice that I have no color in my face, that I get headaches or migraines all the time that don’t respond to over-the-counter meds, I am short of breath when climbing stairs, my heart races. The headaches make sense: there isn’t enough oxygen getting to the brain. Same with the numb or tingly feet and hands: these are far away from the heart, and circulation is getting poorer. The blood vessels in the face don’t have enough blood and therefore my pink cheeks and lips turn pale. And yes, all of it makes me feel unbelievably tired, but it’s not just a sleepy feeling. More like having the flu or as if I am trying to run while in a swimming pool or like my legs are stuck in freshly laid cement.
In October, I had to have a blood transfusion first, followed by an iron infusion, because my hemoglobin was already too low, placing the anemia in the “moderate” range but closer to the severe range than the mild. I didn’t really react to my symptoms (as usual ugh!) until it looked like my lips were turning blue. Which means I made it a whopping 4 months, but probably should have gone for treatment a good couple of weeks to a month earlier. So, 3 months. :/ Only a month later in November I had a follow-up appointment with my hematologist and I was feeling bad again, but I didn’t really think it could be anemia/iron-deficiency already. She yelled at me for not calling a doctor sooner. It turned out that I was having a bout of “pouchitis,” my first one I guess? I was put on antibiotics for 10 days and I felt RIDICULOUSLY better, which then made me think that I had had “pouchitis” for a looooooong time. I had never felt better!!!
Most recently in January, I was nearing the 3.5 month mark since my last hospital treatment, and while I suspected my iron was all used up and hemoglobin was dropping, I got some kind of flu and thus felt awful. So I ignored the anemia symptoms that I could barely distinguish from underneath the guise of the flu and got better enough in time to travel to NYC for work. I guessed that I wasn’t bad enough to skip NYC, and could wait till the following week for my blood work appointment. My hemoglobin turned out to be 9.3 and the 2 days between finding that out and actually getting IV treatment were HARD. I’m supposed to get IV iron as soon as I fall below 11, so suffice it to say, I have not managed to be properly proactive and call when I have symptoms. Why why why NOT??? Okay, At the Will of the Body quote time:
“Being free to wander, hope, and love does not mean denying our vulnerability; rather it means embracing it. We are free only when we no longer require health, however much we prefer it…. Admitting that you may have problems makes you vulnerable, but it is also the only way to get help.”
“But taking pain entirely into my own body, making it too much my own carries the danger of becoming isolated in that body. Isolation is the beginning of incoherence. In writing about the incoherence of pain, one risks becoming incoherent all over again. Language easily goes wrong.”
I think the next quote can relate to many kinds of ongoing maintenance therapy/treatment, but Frank says this in regards to his own chemotherapy treatment:
“You may lose the sense of value in your life; you may fade into the claustrophobia and passivity of treatment and become so obsessed with details of bodily care that your mind shares the numbness of your body.”
These above three quotes are all trying to get at the same issue: how does one admit that they are sick/vulnerable enough to seek and require treatment, completely turning over their body to medical intervention without turning over their mind, which is contained within that body, at the same time? So much of my past health experience has relied on waiting till it’s life-or-death before I seek help, but when I’m already at that juncture, it’s impossible NOT to be utterly consumed by the “details of bodily care.” To live in the moment, THAT moment, is paralyzing, claustrophobic, numbing, awful. I know that when I need iron/blood, that I WILL get better afterwards, but somehow I can’t truly feel that because I just have to BE in and experience the sick/dying moment. It goes both ways: when I’m on the upswing, after treatment, I don’t really think, “Oh but it’s going to end, I’m going to need iron/blood again, I’m going to feel shitty.” I don’t live in the sick/dying mindset when I don’t physically have to. (I can’t quite articulate this as I want to yet…).
There was no fight, only the possibility of change. Making this possibility real involved suffering and struggle, but not fighting.”
Frank talks about the linguistically odd way of saying and thinking that one is “fighting” disease. The disease is part of you, you are essentially fighting yourself then. Is that a good way to think about it? He is not a proponent of this kind of thinking that revolves around fighting battles, losing battles, being a victim, being beat by disease, winning, losing. I think it’s worth considering the language we use in such a matter-of-fact way when talking about disease, and it’s something I want to study more as I go back to school for nursing….
The following quotes are really big ones for me when looking towards the future and trying to balance hope with realism.
“I am not powerful enough to feel guilty for getting sick or proud of getting well. I can only take what happens to me and continue to look for possibilities of how to live.”
“When I become ill again, and someday I will, I hope it will not be the total break in my life, the radical discontinuity, that I experienced before. Health and illness are not so different. In the best moments of my illnesses I have been most whole. In the worst moments of my health I am sick. Where should I live? Health and illness, wellness and sickness perpetually alternate as foreground and background. Each exists only because of the other and can only alternate with its other. There is no rest in either word. In ‘health’ there can only be fear of illness, and in ‘illness’ there is only discontent at not being healthy. In recovery I seek not health but a word that has no opposite, a word that just is, in itself.”
My body is still recovering after my last iron treatment, so I’m still huffing and puffing when I walk, walking slower, heart beating fast. Some symptoms have dissipated like the 24/7 taste/smell of what I can only describe as “metallic hay,” body temperature issues, there is the tiniest bit of pink in my cheeks and lips not created with makeup, bruises are finally fading, eczema hands are healing a little. I’m nearing the end of my nursing school prerequisites and approaching the time (this summer?) when I will start applying to schools. Although I’m sure I’ll still be walking slowly next week, I’m excited to say that I’ll be attending two days of nursing open houses at Johns Hopkins University for their BSN, MSN, and PhD offerings, as I figure out how to put to use everything that has happened to and is happening in my unstable body and mind.
September 19, 2012
Minus the “(Part 1)”, the above is the title of yet another Arthur W. Frank book that has profoundly changed how I think about my health and my body. I first read The Wounded Storyteller: Body, Illness, and Ethics in 2010, when I was incredibly ill and still 6 months away from the first surgery; I wrote about that book here. It concerned how we as sick people operate as storytellers:
“Chronic illness in particular challenges us to ask if it it possible to be successfully ill. A good story is the measure of an ill person’s success” and “Quest stories meet suffering head on, they accept illness and seek to use it. Something is to be gained through the experience.”
In At the Will of the Body: Reflections on Illness, Frank details his own health challenges (heart attack, cancer) and examines the journey from “person” to “patient,” and what it feels like to be part of a “remission society” (you are better, but you will never be BETTER). I copied down fives pages of quotes and my interpretations, having many “Oh My God” moments consisting of discovery, clarity, confusion, and reflection. As I read more and more of these medical sociology narratives and “pathographies,” I feel so passionately driven to use what I have learned in them and in my own illness experiences to improve the theoretical foundations of nursing as a profession, to improve how healthcare is delivered on an emotional level. And I haven’t even started nursing school! But I am already thinking about advanced nursing degrees that would take me into the research realm…. I’d like to jot down some of the book quotes here and my thoughts about them, if anything for the research and writing of my own I hope to one day produce.
“Illness is something to recover from if you can, but recovery is worth only as much as what you learn about the life you are regaining.”
Especially when the disease is chronic, and even if it goes into remission, the emotional goal should be “renewal” more than “recovery.” I will never be “better,” not in the sense of having good health so that can no longer be the goal. But that’s okay! It wasn’t always but it is now. I want to investigate how I got to that place because even though it was my journey, I can’t for the life of me write down the steps in any concrete way or give advice to others on also getting there. But I’d like to try to find and identify those steps if possible…
“For all you lose, you have the opportunity to gain: closer relationships, more poignant appreciations, clarified values. You are entitled to mourn what you can no longer be, but do not let this mourning obscure your sense of what you can become. You are embarking on a dangerous opportunity. Do not curse your fate; count your possibilities.”
This reminded me of one of my worst hospitalizations, pre-surgeries when I was doubled-over from pain, diarrhea and vomiting at home, unable to walk from a plummeting blood pressure, and ending up in the ER and then ICU. I was so emotionally broken that the only words I wrote the entire time in the hospital were: “Can a spirit be chipped away at? If so, mine is. Goal is one day to be able to pick up pieces and either put them back together or make something new with them.” It was a bit naive to ever think I could put the pieces of my body OR mind “back together” but I do believe that I have since made something new with them, that I no longer mourn what I can’t be but rather I try to count those possibilities. It took a LONG time to arrive at that, but I’m curious as to if I could have arrived there sooner. Again, are there steps that one can take to arrive there? Is it different for everyone? How can those working in healthcare help with this process? How can I, either as a nurse or writer or teacher?
“When the body breaks down, so does the life. Even when medicine can fix the body, that doesn’t always put the life back together again.”
I think the above sentences work with “life” but replace it in both places with “mind.” Usually one is discharged from the hospital because the body is fixed enough, but the mind, the spirit, or whatever you want to call it? It’s often far from any state resembling “fixed.” Who in the hospital is there to help you with that, without the risk of adding yet another diagnosis of anxiety or depression to your medical record? I was always fearful of that, losing even more rights because maybe I’d be deemed crazy or suicidal. I also knew I’d be given anti-depressant or -anxiety meds and I didn’t want that quick “fix” either.
Frank is exceptionally skilled at analyzing the literal and implied meanings of basic words, especially words that may be used interchangeably but, semantically, are not the same. Frank talks of “disease” as referring to “the body” whereas “illness” refers to “my body.” “Disease” is a more objective term, something that you are not quite part of whereas “illness talk tells of the fear and frustration of being inside a body that is breaking down.” Sometimes I talk about my “disease” and sometimes my “illness,” but I never paid attention to why I chose one word over the other–was it randomly or subconsciously driven? Now that I’m aware of the difference, I can’t really objectively analyze the usage in my own conversation or inner thoughts, but it’s worth thinking about and worth researching in the future.
“One person’s anger or grief may differ so much from another’s that calling them by a common name only obscures what is actually going on for each. The word–anger, grief, or whatever–conceals more than it reveals. The popularity of such a theory is not surprising. Persons using such words think they can understand without having to become involved….”
Frank takes issue with how the familiar grief stages of Kubler-Ross accomplish the same obscuring. When someone is angry about an illness or diagnosis, anger becomes “just a stage” and there is no attempt to go any further in terms of understanding what that anger is about. While it can be helpful to know that what you are going through is “normal,” it is not at all helpful to then have your feelings dismissed because they have been properly assigned to a stage and that’s that.
“It is no small thing to have your body rearranged, first by disease and then by surgical and chemical interventions intended to cure that disease. Critical illness takes its travelers to the margins of human experience. One step further and someone so ill would not return. I want that journey to be recognized.”
This touches on what I want to see change in the hospital and doctor office settings. Frank says that while he does not expect “emotion or intimacy” from doctors and nurses, he does expect this “recognition,” but he’s unsure what form it should take. I feel the same way. I don’t know who it is in the hospital setting that should recognize the magnitude of what patients are dealing with. It’s definitely not the surgeons, who must maintain emotional distance when you think about what they do on a daily basis. Sometimes it can be a nurse who truly talks to you like a human being, but nearly everyone in the hospital setting is so pressed for time, so much is required of them already. I think there needs to be an adult version of the Child Life Specialist, someone who is there to help you navigate, prepare, cope, and express. (Does a psychologist/psychiatrist do that?! I wouldn’t know…).
One of the most eye-opening and thought-provoking topics of the book (and therefore one of the most painfully mind-blowing) is mourning or grieving.
“Mourning slows down the treatment of the ill and reminds others of their own mortality. Society pressures us to return to the healthy mainstream, minimizing and forgetting our losses. I want to emphasize mourning as affirmation. To adjust too rapidly is to treat the loss as simply an incident from which one can bounce back. Only through that mourning can we find a life on the other side of loss. The losses you go through are real, and no one should take these away from you. They are a part of your experience, and you are entitled to them. Illness can teach that every part of life is worth experiencing, even the losses. To grieve well is to value what you have lost.”
When someone dies, it is understood that there is a grieving process, a time of mourning, but when you are experiencing loss within your own body, there are also feelings of grief and sadness that accompany that loss. And yet, there is a sense that you are not supposed to grieve or mourn or get through these losses in that slow, gradual way as with death. Frank sees those parallels and wishes the medical community did too. So do I. I’ve written about this before: I hated when people would tell me “don’t cry” when I was in the hospital. Don’t cry?? I had to cry, whether out of physical or emotional pain or both. Not wanting to hear those words from visitors or medical staff, I would attempt (often successfully) to “wait” to cry. When I knew I was done with tests and vitals and visitors for the night, and I could walk (which was not always the case!), I unplugged myself from the wall, walked into the bathroom, closed the door, and cried. I needed to have that, I felt entitled to being sad, and I definitely did not need to feel like I was somehow wrong in needing that.
And yet, at the same time, I so badly wanted to be (and often succeeded at being?) the positive, upbeat patient. The patient who didn’t usually cry in the face of bad news and bad procedures. When I read the following, I had my biggest “Oh My God” moment:
“Society praises ill persons with words such as courageous, optimistic, and cheerful. Family and friends speak approvingly of the patient who jokes or just smiles, making them, the visitors, feel good. Everyone around the ill person becomes committed to the idea that recovery is the only outcome worth thinking about. But how much work does the ill person have to do to make others feel good…the work the ill person does to keep up an appearance. The appearance most praised is ‘I’d hardly have known she was sick.’ When the ill person can no longer conceal the effects of illness, she is expected to convince others that being ill isn’t that bad. Much of the time it takes hard work to hold this appearance in place. I have never heard an ill person praised for how well she expressed fear or grief or was openly sad. On the contrary, ill persons feel a need to apologize if they show any emotions other than laughter. Sustained ‘negative’ emotions are out of place. If a patient shows too much sadness, he must be depressed, and ‘depression’ is a treatable medical disease.”
I felt chilled to the bone reading these words because my immediate thought was: I am guilty of that. I did it wrong, I did it all wrong. I was that cheerful patient, who kept up that appearance, who decorated my room like it was a child’s birthday party, who did crafts in bed. But then at the end of the day, like I said before, I had to shut myself up in the bathroom and cry. I was somewhat aware that I was sort of putting on a show, but it seemed preferable to the alternative. I didn’t want to cry all day. I had spent many days of my life with colitis doing just that. It felt like “enough” to have those ten minutes of private tears a day, and I also thought I was “getting through” it all by displaying the parts of my life that I love, the creative work I do, attempting to have that same energy. I needed to remember that I was still that person too.
A few months ago, I was driving to a park near my hospital, and even though I was doing well and not thinking about my health or disease, when the hospital came into sight, I totally lost it. Out of nowhere! Like goosebumps all over and bawling. I had driven past my hospital so many times, had even been there recently for more health problems, and though it usually conjured up memories or feelings, I never “lost it” like that. It was then too that I feared that “I did it wrong.” The process of grieving or mourning, I mean, or lack thereof. Had I even begun to “grieve”? Some occasional crying out of nowhere seems innocuous enough, but it’s the subconscious aspect of it–where did that come from? What else is down there below the surface? My biggest fear after having been through all of this is not additional health problems (got those now too!) or dying from any of it, but rather, it’s becoming totally paralyzed from past, undealt-with feelings. Or in other words, severe depression that would force me into bed never to emerge. That is why the spontaneous crying spells terrify me and why I want to try to “deal with” the effects of what I’ve been through now, in some kind of rational, manageable way. (Is that possible?)
“The other side of sustaining a ‘positive’ image is denying that illness can end in death. Medical staff argue that patients who need to deny dying should be allowed to do so. For them a patient who denies is one who is cheerful, makes few demands, and asks fewer questions. Denial may not be what they (the patients) need, but it is what they perceive those around them wanting or needing.”
Frank seems to think that this denial is mostly “for others,” to keep up those appearances for the sake of others, that we are trying to be cheerful because this is what everyone around the patient wants. This is where I might disagree. I think I “denied” first and foremost for myself, and secondarily for others. I don’t think I could have mentally gotten through half of it if I hadn’t made my room a party. I knew where I was. I knew that every time I crossed that threshold into the hospital that I was about to experience more hell on earth. There is no amount of decoration or crafts or balloons or flowers that could have made any of it physically easier or less painful. There IS no denial of the physical experiences because you are too IN them. And me wanting to keep up this appearance, this image of Alicia that everyone knows, that was just me clinging to those parts of my life as much as possible. And yet, I did it so that everyone could walk away thinking that I was positive and unaffected and “dealing well” with it all. So that I wasn’t causing further stress on everyone. (Catholic guilt?) Is it possible to separate what you are doing for yourself, and what you are doing so that others have a particular perception of you that you desire them to have? Are these one in the same? I still can’t imagine doing it any differently…
Frank does ask worthwhile questions that I cannot answer and that I’m afraid to think about:
“What are you compromising of your own expression of illness in order to present those around you with the cheerful appearance they want? What do you fear will happen if you act otherwise?”
I don’t know, I don’t know…
June 5, 2012
[First post of 2012! I have had "write blog post" on my to-do lists since January, but then my blog platform was hacked and plagued with spam, and it took some time to figure out. Recently when I have logged in, I have had to re-type my password and click that box "Remember me" so that I don't have to type anything in the future. It feels right to have to check that: Remember me.]
Shortly after I wrote the last quick post in December, I got featured on the Etsy blog in the Quit Your Day Job column, which was an extraordinary honor and a truly fulfilling piece to write. For the first time possibly ever, I got to tell my story of how I went from teacher to chronically ill person to whatever it is I am today, and how Etsy was such a HUGE part of that. Everything I have been doing in regards to crochet, magazine work, and book work stems from opening my Etsy shop when I got sick with colitis. It is very hard for me to talk/write about some of it still, and I definitely shed a lot of tears writing the answers to their questions, and then reading the 133 comments that gradually followed.
I was stunned and flattered and again honored to receive such a positive response, such encouraging feedback to my story. There were a lot of comments from people who are also battling chronic diseases, and they found the post inspirational and motivating, especially if they too were financially strapped due to an inability to work full-time, just like I was, and have turned to Etsy for its creative work-from-home possibilities. Comments like: “Telling your story is an inspiration to me and the rest of humanity” and “Best story I have read on this blog. Thank you for your courage and inspiration!” and “Estimated time it took me to smile from ear to ear while reading this: .002 seconds. ” When I read all of these comments (and cried A LOT A LOT A LOT), I sort of pointed to myself and said, “Me?” This will forever be one of the most important pieces I’ve written, so click on the link above if you want to read it.
When I was working on the writing for the Etsy post, I had just started to recover from my 3rd and final surgery for colitis/j-pouch, which was on October 31 of last year, which also means I turned 30 in the hospital (Nov. 2). This was an “easier” surgery than the other two, but the recovery is quite different. Gone was my ostomy, as everything was reconnected during this one and I went back to “going to the bathroom the normal way,” though it’s not exactly normal as it is in a healthy person! I had been told that the first couple of weeks would feel like colitis at its worst all over again, and that I HAD to remember that this was temporary and would pass. Even knowing that, it was an extremely difficult time of running to the bathroom a lot both night and day, being on painkillers, and generally feeling hit by a truck. About a month afterwards, around Thanksgiving and the beginning of December, I began to feel the tiniest bit better. It was an amazing thing to feel like I could finally think about what I wanted to do with my life and to actually go after it!
In the 10-month span in which I had the 3 surgeries, I spent a lot of time in the hospital, in treatment centers, and in doctors’ offices. Even though a lot of it was truly horrific and unbearably painful, both physically and emotionally, I accumulated some really great times with nurses there. Nurses who not only took care of me night and day, but who talked to me about their kids, their craft projects (my craft work was everywhere in my room), books I was reading, etc. Who talked to me as a person and not just a sick ball of flesh. As I went through my day-to-day routines of vitals, blood, tests, and attempts to walk in the hallway, I got a little sense of their day-to-day. Some of them I got close to and I looked forward to seeing them, and then was a little sad when I got discharged and knew that I might not see them again. I was so incredibly impressed and amazed at what these nurses did every day they went “to work,” both the actual and emotional “work” required on a daily basis, sometimes for 12 hours straight. It all kind of made me speechless, when I would try to put myself in their shoes.
Up until the last recovery, I didn’t want to think too much about my future, because I didn’t know how it would all turn out. I didn’t want to get my hopes up about living a life I had more of a say in if it was all for naught, so I was cautiously optimistic about making plans. But what did start to build in me, at first subconsciously and eventually consciously, was a desire to be a nurse. I would think about it when in the hospital, and look into programs when not in the hospital, doing the math in regards to how long it would take me to go back to school. And I got really excited about it, to the point that I felt like it was what I HAD to do, after all these years of being sick, a sort of “calling,” even though I hate the triteness of that word.
So, in December, a day before the deadline for the next semester, I applied to a community college to start the long process of taking a ton of prerequisite science classes , which is what one does before applying to nursing schools if already in possession of a degree. And that was that: I was going to go back to school to be a nurse. A funny thing happened when I started telling people: they were a combination of surprised and kind of mad! I had mentioned it casually to a couple of people throughout 2011 and got responses of, “why would you want to give up what you’re doing now?” and “Really? But you’re such a great writer and crocheter” and a myriad of other replies that basically said I was wrong for wanting to change my life/career path so suddenly and drastically. To me it felt SO RIGHT, so I was utterly stunned to receive such feedback. And the people who tried to convince me not to be a nurse, combined with the fact that I was at that time in the really hard parts of my last recovery, sent me into a deep depression for a good week or two. I couldn’t get out of bed (well, besides all the times I had to go to the bathroom!) I was so sad that after 7 years of a disease telling me what to do and completely directing my life, now that I finally had this little glimmer of hope of a brighter future, all these people were telling me what to do and trying to direct my life.
At some point I emerged from the sadness and stopped caring what other people said because going into nursing felt like absolutely what I wanted to devote the rest of my life to. To put it simply, I want to help people the way I was helped, but there are more reasons than that. I don’t want a job where I have to tell a person what to buy, or wear, or even believe, but I do want a job where a person wants their life and health back, in small and big ways, and I want to help them get there. I want to be part of their lives when they are trying to prolong those very lives. There are times in the hospital when I wanted to stop fighting for my life and just rip out the IVs and jump out the window (they were locked, I checked), but the nurses and everyone on my medical team involved with my health never stopped fighting. They took over my life even when I didn’t want them to and they replaced my desire to live with their desire to want me to live. Sure it’s their job, but isn’t it more than a job? It has to be.
I went back to school in January and I have since completed two classes and I’m currently taking my third. A 4.0 student thus far! I had forgotten how much of a science person I was in high school, how thrilling and fascinating even my Intro to Biology class could be. Every time I left class I was thinking, “OMG this is all amazing! DNA! Transcription Factors! Cellular Respiration! OMG!” It’ll be especially interesting to go deeper into these science classes and understand what is wrong inside of me. I was feeling okay enough digestively, but by no means great at this point, and yet gradually I started feeling pretty awful. My energy was zapped, my heart was always fast and my BP low, and when February hit I couldn’t exercise at all or carry a toddler. I felt severely anemic (which of course I had experienced before with substantial gastrointestinal blood loss) but I wasn’t having any other health issues and definitely no blood loss. I got progressively worse, to the point of not being able to breathe well, having so many aches and pain, losing my hearing, sleeping badly, having muscle spasms, losing my appetite, not being able to walk, and towards the end I could feel my brain function slipping, like there were connections not being made, like I was full of woozy morphine. I wanted to get through my mid-terms in March and not miss any classes, but I knew something was horribly wrong. I made an emergency doctor’s appointment with my PCP for 24 hours later, but when I woke up the next morning, and couldn’t move well or think clearly, we went to the ER. Lo and behold, my hemoglobin was 5.8, my lowest ever, which translates to, I was missing 2/3 of my blood supply. My body was shutting down once again and I almost waited too long to do something about it.
This was one of my first health problems that was a total mystery, which was terrifying in a different way compared to my regular health problems where the terror is in sort of knowing how bad it is and how bad it’s going to get. I had two blood transfusions and a lot of tests, and I was eventually told it was a combination of “occult” blood loss (I was slowly leaking blood somewhere but they couldn’t find out where) and possibly not absorbing iron. I had no iron stores, which take 3-6 months to deplete when you aren’t absorbing enough iron in your diet. It was a tough hospitalization, coming only 4 months after my last one when I thought I’d be in the clear for a while. And I hadn’t yet “recovered” from psychological exhaustion and a somewhat broken spirit.
At the same time I was developing a desire to become a nurse, and even a little bit before that, I was becoming okay with everything that had happened to me and got to a point where I was okay with letting go. I never thought I’d get there, but after a lot of thinking and reading of religious and existential philosophy and psychology, I arrived at this zen-like state in contemplating my life. I was finally proud of what I did do, what I did accomplish, despite so many health obstacles, and not hung up on what I wasn’t able to do, and although of course I wanted many more years to live and love, I felt peaceful and not at all bitter at the thought of my life possibly being cut short by bad health. That is a calm place I never imagined arriving at without some monumental spiritual or religious transformation. Maybe it’s just a case of my mind being too tired by it all to be angry or sad anymore, almost being numb, but regardless it’s like this enormous load was lifted off my shoulders.
I had to add a hematologist to my medical team to deal with these serious blood issues, and I was put on horse pills for iron and given 2 months to get my hemoglobin up to 11, which is *only* mild anemia. I was gradually feeling better and doing well in school, and was again somewhat optimistic (cautiously!) about getting a handle on things. Towards the end of April, in my psychology class, “Human Growth and Development: The Lifespan from Birth to Death,” I was reading the chapter on “Late Adulthood” which can begin around 65 and ends at death. Robert Peck, a psychologist, theorized that the elderly must tackle “three major developmental tasks or challenges.” In less psychology-esque and more layman’s terms, these are: redefine oneself in ways that do not relate to work roles or occupations, learn to cope and move beyond physical changes and deterioration in the body, and come to grips with impending death, realizing you’ve made contributions to society and these will outlast you. When I read about these developmental challenges in the last stage of life, my jaw nearly dropped and a gigantic light bulb lit up in my head: this is why I tell people that I feel like I am 80 years old, but can’t quite articulate why I feel that way. I HAVE DONE ALL OF THOSE!!! It took years, and I didn’t even realize that I was tackling the “three major developmental tasks” of the elderly, but I was! OMG! It also explains why simultaneously I feel so excited and ready to live my life right now but also feel a strange sense of calm when I think about it ending, say, tomorrow. Ready to live, ready to die. It’s kind of an unreal state of mind.
The iron pills I was taking pretty much destroyed any gastrointestinal progress I had made, which is just par for the course with huge doses of iron pills. In the beginning, my hematologist had asked me if I could “tolerate” the 1000mg of iron a day. (You only need 18mg a day, mind you). I hesitated because this isn’t even a question in my head. I mean, didn’t I have to “tolerate” it? There weren’t exactly any other options on the table. My life seems like a never-ending series of symptoms and side effects, and as I have grown in my way of thinking about my health, the question in my mind changed from “can I tolerate this medication, this treatment, this disease, these side effects?” to “how am I going to train myself, to mentally equip myself, to increase my pain threshold, so that I can tolerate all of it every single day?” It’s GOING to affect me physically in a multitude of ways, but how can I decrease the ways that it affects me mentally? It isn’t easy by any means, but that approach makes all the difference in how I deal with such challenges. It seems like such a long time ago that I got stuck in the “this is unfair” state. Okay, maybe it’s horribly “unfair,” but now what? I cannot stay in the “this is unfair” state for longer than a moment anymore than I can enter the “I can’t tolerate” a drug or side effect. Those are such stagnant and paralyzing places to inhabit and I remember them well.
The iron pills didn’t work. My hemoglobin went up a gram, but my iron stores went down, which means that the only new blood my body actually made was because I still had transfusion iron in me from March. It’s pulling from what iron is left, but I’ll hit 0 and then my hemoglobin will also fall, i.e. I will not be able to make new blood. I knew this was a strong possibility, but I was tricked into thinking I was improving because I did feel a little better from that one additional gram of hemoglobin. A lot of iron absorption occurs at the end of the small intestine, so the doctors believe that because mine is reconfigured, it’s not absorbing iron. At all. You need iron to make blood and do a whole host of other things in the body…. Yesterday I had to have my first infusion of IV iron, which involves spending 6 hours in the hospital, but I didn’t have any adverse effects (anaphylactic shock, anyone?), so hopefully this works. Rinse and repeat…forever.
December 9, 2011
I did a Barnes & Noble crafting event for our latest book, Microcrafts!
Speaking of Barnes & Noble, their crochet book/kit I contributed to, Yummy Crochet, finally hit stores and is already in a 2nd printing.
I surpassed 2200 sales in my Etsy Shop!
October 27, 2011
I have a list of 6 blog posts I want/need to write, but the one that actually has a self-imposed deadline is my birthday post; I'm turning 30 next week, on November 2! Last year, when I had my colon taken out in December, I did the math for the other two surgeries that would be required. I knew there was a relatively good chance of being in the hospital when my birthday rolled around, especially as I nailed down short-term jobs and I realized that with the book coming out in my favorite month (October) and my business getting really busy towards the holidays (mid-November-January), I was even more sure that a birthday hospitalization was highly likely. Except for the part where I'll be in pain, dazed, and unable to eat anything for many days (no cake! no ice cream! no champagne!), I'll still get to be surrounded by friends and family, surrounded by balloons, wearing a party hat, looking out the window, thinking about the years that came before, and hopefully the years that are ahead of me.
And when I think about it, this could be the best cause for celebration ever, a chance to regain health and the ability to live the life (or lives, as I attempt to be multiple people) I want. I will get rid of this ostomy bag after 11 months, 11 months of emptying a bag of poop that hangs at my side, too many times a day for to want to count. I will not be looking at my small intestine poking out of my skin and into this bag. I will go the bathroom the "normal" way! It's a pretty exciting time. To make up for not spending my favorite holiday (Halloween) or my birthday doing what I'd prefer to do (ya know, now getting my guts rearranged), I packed it in during October, my favorite month. At some point, I will write all about that here. For now, I want to share with you an essay I wrote for a book that my friend Nancy put together, entitled, How Much Remains. (You can buy it if you click on that link!) It is very related to what I mentioned above, and sums up way more articulately than I'm doing right now, how I feel about this milestone birthday.
"When is this tree's birthday?" he asked, gently patting its rough base.
An image of trees celebrating with helium balloons and sheet cakes and silly games flashes across my mind, as I add this question to the always-growing list of reasons I am profoundly captivated by children.
I know what he is asking, that he is being perfectly literal, but I answer with a perfunctory adult response anyway: "Um…do you mean, how old is this tree?"
"No, I mean, when is his birthday?" he reiterates, a little agitated, as if I am misunderstanding entirely.
I answer again, with a teacher response: "You know what, I'm not sure. We wouldn't do this, but if we cut it down and looked at the tree's trunk, there would be all these rings. And if we counted them, we'd know how many years old it was. So if there were 4 rings, this tree is 4 years old, just like you."
The teacher never wants to utter the words, "I don't know" to a child who genuinely wants to know, and in this case, I don't want to admit that, in all likelihood, no one knows when this tree's birthday is.
"I think he's older than me. He's really big," tipping his head back, as if a little more scrutinizing will successfully lead him to an answer—a day, a month, a year.
"He's probably older than me even. How old do you think I am?"
He ponders for a good thirty seconds, looking around at the other kids and adults on the playground, and shivering a little because it is early spring in New York City: "A hundred?"
"Nope! A lot younger than that. I'm 22."
As if continuing on from his original question, he says, "Because if we knew his birthday, we could have a party for him."
"I know, I was thinking the same thing. Okay, give me your hand, we gotta go."
"Happy birthday to you, happy birthday to you, happy birthday dear…." My body quivers and stiffens as I hear this being sung to a patient down the hall the moment I am staring out the hospital window at a row of evergreen trees. When is this tree's birthday? Where is that little boy now, seven year later? The heartbreaking reality of working at a daycare center is the never-ending string of goodbyes, to children you spend months teaching how to tie shoelaces and wash hands. Because if we knew his birthday…. The song ends.
I stop looking at the trees and instead watch the slow drip of the IV bag, that mesmerizing regular movement of liquid emptying into my bloodstream by way of my hand. What is it I always think but rarely say to describe these grueling hospitalizations? For all that is being pumped into me gradually, and at other times, rapidly, my spirit's lifeblood is gradually, and at other times, rapidly, draining right out of me. Physically, I make it out alive, but mentally is another story.
After six years of fighting a disease with no cure, it all seems to culminate in this poignant moment of remembering a tree and a child, a moment that feels light-years away from where I am now, physically, mentally: I am going on day five of nothing but clear liquids and day two of nothing but a daily 8-oz glass of water, which I extract with a tiny ridged sponge on the end of a plastic stick, as skinny as a twig. I am waiting to have my large intestine surgically removed so that I don't die from severe ulcerative colitis or its brutal drug therapies. Or by own hand, for that matter.
Having narrowly missed spending a birthday in the hospital, there existing too many possibilities of doing such, I work out the math for the trio of surgeries required—there is a good chance I will be sung to right here, on my 30th [Day of the Dead] birthday. If I dread this milestone of a birthday, it will be for reasons that involve stretching my pain tolerance to a horrific, nearly unbearable degree. If I look forward to this milestone of a birthday, it will because I could never face this annual event thinking, yet another year gone, but rather, yet another year, very fortunately, lived.
September 26, 2011
Four years ago, a woman named Diane Naegel bought a set of my crochet Halloween amigurumi–pumpkin, ghost, candy corn–just a few weeks after I made and listed them on Etsy for the first time. When I saw that the mailing address was a few blocks from my first apartment, I sent her a message to the effect of, "Hey, I live in New York too!" We got to e-conversing, sharing a love of yarn things, Halloween and the 1920′s, so I invited her to an upcoming Crafts and Crumbs. She wanted to come but was setting up some kind of photo shoot for the 1920′s/30′s events she often put on. We continued to correspond, became Flickr and Facebook friends, invited each other to crafty and Jazz Age events over the next few years, but something always happened to prevent our meeting. Life, work, travel, the busy-ness of being New Yorkers, my bad health. Nonetheless, we never lost touch, penpals in our shared city, looking at the same skyline but from different angles.
When I left New York in June of 2010 for health reasons, we both expressed sadness over email at not meeting, but I told her that if all went well health-wise, I'd be back to visit for sure, and "we WILL meet!" A few months later my book Witch Craft came out and I was planning my first trip back to NYC, so I wrote to Diane, only to learn that she had just been diagnosed with breast cancer: "I'm not posting about any of this on FB…I would love to finally meet you in person!" That's when our writing to each other really picked up, when we were both in the midst of dire health situations. Young, social butterflies, New Yorkers, in love with life each and every day–my heart broke a little and I wanted to do anything and everything for her, 360 miles away.
I'd get teary sometimes reading what she wrote, "Know that you are an inspiration to me with how you deal with your situation and lead an amazing life…so THANK YOU for that!" I told her all about my friend Rose, who lived 15 minutes from me in Brooklyn but it took years to meet after so much writing, because of her cancer, because of my colitis. Before Rose, I didn't have a young friend who battled something serious like I did, someone who understood the emotional repercussions of dealing with a merciless disease, of trying to put back together the pieces of a shattered life. In regards to Rose, to Diane I said, "she made me want to LIVE and that was hard to want. It's not always easy, many tears shed of course, but I do believe 100% in the many quotes I turn to, 'out of suffering have emerged the strongest souls; the most massive characters are seared with scars.' It's hard, but it's true…." And that began a series of lengthy emails about being sick…
Diane: I've cried MANY tears over the last couple of weeks…but most of them are over how touched I am by so many people reaching out to me. I know I'll never be the same after this experience…and that through these times of suffering, you're really enlightened to so much and learn to truly and deeply appreciate so much.
Me: Yeah, I always want to fast-forward to the parts where I can just reflect on it and not be IN it, but that's just not how it goes…I was reading this sociology book "The Wounded Storyteller" WHILE very ill this summer, which was hard…but "comforting" to me at the same time. I feel silly for recommending "a book" to anyone after any diagnosis, but it did really articulate what I was already feeling, 'The ill person who turns illness into story transforms fate into experience.' and 'I would never have chosen to be taught this way but I like the changes in me.' This last one=so true.
Diane: I wish I could fast forward the tough parts, too…if only! It's totally sad, but I think knowing that I'll lose my hair soon is a tough pill to swallow. I'm hoping to rock wigs with tons of glamour, but I know it'll still hurt, too. But like you said- I think I'll like the changes in me at the end of it. I'll totally look into that book!!
I was planning to meet up with her that Halloween, but a video interview I did about being a sick creative person took four hours, and thus I missed Diane's event. She bought my book and said I'd have to autograph it some time. She was halfway through chemo treatments in November when my health was finally taking its definitive turn for the worse. Our usual check-ins with each other, dreaming about crocheting together and not being in and out of hospitals. She tells me her surgery and radiation plans and I write back to her from the hospital in December. She has lost her hair, she'll lose her breasts, I will soon lose my colon. She sends me a Zelda mag care package while I'm there.
In February I go to Philadelphia, visiting the Mutter Museum. I look at ulcerative colitis in a jar and at the megacolon, buying the postcard of the latter. I look at the photo credit and recognize the name, Don Spiro, Diane's fiance! What are the chances…. Diane tells me she has had a "complete response" to chemo, meaning that the cancer is gone, but she'll still lose her breasts in a week. "I was THRILLED. It's SO good for the prognosis when it responds this well to the chemo. So now I'm way less nervous about it!"
She has the surgery, gives me all the details, how it feels, what her chest looks like, what the plan is for the year. She ends that email with, "Careful hugs to you as well…I'm so glad to have someone to talk to about illness that takes a long time to deal with! It's such a unique situation!!"
In late June the cancer comes back, which was highly unlikely, so she starts chemo again. She writes: "And you know–you're so lucky–you'll be out of that bed ridden state before you know it and on with life!! I'll be thinking about you leading up to surgery time…and if you ever wanna call or commiserate or whatever, I'm around!
We are both gonna be SO TOUGH after this!!!" I have a spare week in between jobs and my next surgery, so I plan a July 4 trip to NYC. This time around, I am determined to meet Diane, even if it means sitting in Sloan-Kettering with her. We start looking at potential days, our emails getting more giddy at the thought, and we set a dinner date.
She picks Supper Restaurant in the East Village and we text message a lot, as I return from CT that day and she tries to leave work early. "I'm leaving! Where u at??" she writes. "Walking along Bleecker, just got off the 6." I walk quickly, thinking I am late, and then she calls because she is half a block from where I am, now on 2nd Street. And that is where we finally meet, in front of a community garden on an insanely hot summer day in New York, both of us smiling ear to ear.
We talk for 20 minutes at the restaurant before even looking at the menu, the waiter coming 3 times to the table and we have nothing to tell him. She talks about what she is feeling/thinking, that now the doctors are being careful not to promise anything like they did before, echoing when I was diagnosed with colitis and was handed a prescription and a "you'll be fine." We have tears in our eyes. We finally order and talk about everything. I wish I had a tape recording of this, what, 2 hours? I drive her to a subway station on 42nd St, she tells me to stay with her in Astoria next time I'm in town, we'll have adventures.
That night we write Facebook messages about each other at the exact same minute. July 6, 2011, 11:59pm. I write: "So so glad we finally got to meet. You are even cuter in person!" She writes: "had a lovely dinner with Alicia Kachmar tonight! so wonderful to FINALLY meet my online crafty pal in person! xo." I mention that we forgot to take a picture of us finally together and she says, "I realized that after I left! D'oh! Next time we will!! " and I say, "For sure!" Always exclamation points, smiley faces, xoxoxo's at the end.
I return to Pittsburgh for my 2nd surgery and I have a slew of complications for a month after that send me back and forth to the doctors, to the hospital, to the outpatient wing. She is in the hospital again too with lung issues. I finally get back on my feet in mid-August and go to work on a care package/birthday box for Diane. I bake cookies, crochet her a Nurse Safety Cone, make owl soaps (she loved owls!), and buy little things like grippy socks, stickers, cocktail flavored jelly beans, hand sanitizer, pretty tissues. "i just got your package….you are SO dear!!! my mom and her friend are going nuts over all of it!! im in the hospital again and had a procedure yesterday to solve my little lung problem. YAY. but this SO made me smile and thank you so, so much for thinking of me!!! xoxoxox"
She was always encouraging and upbeat, she seemed to have a similar approach to illness: she took it seriously, was ready to fight, but didn't lose her sense of humor or desire to live every day to the fullest. She wore her red lipstick and black eyeliner in the hospital, just like I meticulously painted my nails in there. Those things matter more than you would think, those small bits of control, trying to feel beautiful in the midst of so much ugliness. She was surrounded by her "medical team" of stuffed animals like I was. Diane was an accessories designer for OshKosh B-gosh, the editor and founder of Zelda Magazine, the owner of Lulette, involved in burlesque acts, and the organizer of many costume/vintage/cocktail/Jazz Age parties and events. She did everything with style and class and excitement and love. She lived. She really lived. She was truly one of the finest people I have ever known.
Diane passed away suddenly on Sunday from complications related to breast cancer. I cried until my eyes were swollen shut and drank wine until my mind shut down. Never once in this year-long battle did I think we'd lose her because it simply seemed too unthinkable, a world without this wonderful woman. From the looks of her Facebook page, she has touched so many people in addition to myself. I don't think I even realized how much we wrote to each other over the years or commented on Facebook posts until I went through all of it last night, reading everything again and again, trying to remember our single night out together, what we talked about, what she was wearing, etc. I wish we had taken that photo of us we talked about, but I will always have our words and memories.
Diane's memorial service will be so true to who she was: "Vintage attire is not required but is encouraged. To all those who knew and loved her, she would want you to be strong, enjoy every bit of life, and be happy celebrating her memory." As she said in an email to me so many years ago in regards to a regular 1920′s/30′s costume dance party she helped out with, "It's nice to have a great excuse to really dress up every now and then "
Someone here asked me if we were "close" and I hesitated to answer because it doesn't seem quite right to claim closeness when we had two hours in person together. Now when I read the above and think about all the emails, just a few fragments of which are above, I realize I shouldn't have hesitated. I am missing her beyond what words can accurately express. xoxoxo