It is almost amusing to have to promote the Ulcerative Colitis Success essay contest for which I was chosen as a semi-finalist, from the confines of a hospital bed, where I’ve been for 10 days now. ‘Tis the ultimate test of remaining positive regarding this disease if there ever was one. Last year, 700 people entered the contest, 10 were chosen as semi-finalists and 5 were ultimately picked as grand prize winners. The first stat may be different this year, but the other two are the same. Suffice it to say, I am utterly honored to be one of those 10. Being a long-winded writer, I had planned on writing a longer “companion piece” for fun, seeing as though we were limited to 1500 characters with spaces and punctuation (about 250 words), which to me is akin to anachronistically telling Henry James to write more like Hemingway without sacrificing any Henry James-ness. The contest details:
Celebrating UC Success is designed to recognize people whose lives are impacted by ulcerative colitis (UC). This year’s program encourages UC patients to creatively express their personal experiences as they pertain to overcoming the challenges of their condition. We encourage patients to describe how this creative expression has influenced and/or impacted their lives. We are asking you, the UC patient, to “Express How UC Success.”
My plan for elaborating involved telling the longer version of how I started crocheting years ago when very housebound and/or bedridden, how I opened my little eternalsunshine Etsy shop (a name I chose because of the Alexander Pope poem, the movie and because it was tongue-in-cheek–I was in debilitating pain, a giant ball of misery–that’s my sense of humor). And the great opportunities and people it has led me to, especially over the last 12 months or so.
Leading up to this latest bout, I had 18 months of back-to-back flare-ups and prednisone runs. I waited to call the doctor this time, longer than I normally do, to try to weather the storm on my own, which people do manage to do. (But then again I’m on the severe end, so this is not a reality). Even when I emerge from denial, I am still resolved not to call. For 2 days, as I attempt to stay on top of my work and my life, at the forefront of my mind is the thought, there is only one possible ending to this if I do nothing. I’m not sure I fully grasp that sometimes…. But regardless, I still debate what to do as if there really is an option. I’m not sure why. Maybe it’s because this is when my in-the-moment self actually considers the future, in the sense of I don’t know if I can do this for another day, I don’t know if I have the will. Because there will always be another bout due to the chronic nature, I get through one only to be faced with yet another–I feel as though I am committing to all of them every time.
I call. I start on the meds. I don’t get better. I make the even more difficult call where I am given so many days before “surrendering” as I call it, i.e. going to the hospital. “You have 2 days. Saturday. I’m not telling you a specific time.” Despite the absolute system-wide body deterioration that is taking place, I can’t face it and want to wait till Monday, to avoid a weekend ER (I mean, would you want to sit in a crowded ER when you are running to the bathroom 20+ times a day? The logistics are…um…really shitty!). And no matter how stupid it sounds, I wanted to attempt to complete outstanding work, write emails alerting certain people I will soon be MIA, get things together as best I can. So I knit slippers for a magazine and make pancakes for dinner and hold onto everything I love to do as long as I humanly can because the next day I won’t be able to. Monday morning I stare at the ceiling, feeling like death and trying to mentally prepare for an indeterminate amount of life-saving hellishness that isn’t possible to mentally prepare for, that will not be pretty. I pack two bags of random toiletries, more books than shirts, Ernie, Safety Cone.
My doctor takes one look at me in the ER and says, “you’re a tough cookie, but you should have come in sooner.” That is our now 5-year relationship in a nutshell: he knows me better than I wish he did, he sees through my game face that I thought was impenetrable, he always balances a compliment (“you’re very talented”) with admonishing (“you have to get a handle on work and stress now, even if it means cutting out things”). The last time I was in his office, he said to me: “I used to be like you, when I went to med school. I looked at things like you do, but I knew I had to stop if I wanted to be a good doctor. You look at the world too emotionally, you should try covering up one eye (motions to eye). I laughed and replied, “But I’m a woman and a writer right off the bat. That’s what I do. I can’t change, I don’t want to.”
I’m currently going on day 10 of this hospitalization, having been tethered to IV bags with no food for the first 30 hours, then allowed only apple juice, broth, the occasional pudding cup for another 2 days. My brain was already blitzed from dehydration, blood loss and disease, the starvation period the final straw that makes me feel like I’m gonna lose it. Except I have no energy to lose it, to cry too much in that state. I had only been hospitalized one other time and I remember finding that so incredibly frustrating, that I could not expend the energy on expressing sadness and pain, that I had even lost that ability on top of everything else. One really loses a sense of identity here, reduced to being a mere body, no longer a person in any kind of normal way: I don’t take showers, I haven’t heard a car horn or a bird, I haven’t seen the sun except when it reflects on this one hallway window around 5pm.
When I was in the truly horrific throes of illness back in those days, when there was no let-up, no hour of peace at home, I remember thinking, if I make it through this, if I can actually survive this, I hope I emerge with the overall very basic thought of, “it was worth it.” That in some motivational-speaker-y way I could say those words to a thousand people sick like me and not be lying. Beyond a doubt, worth fighting, don’t ever give up. There was a longing, buried deep beneath the various layers of agony that wanted to get there so badly. But all I knew at that time was that I was not there. What I realized this time in the hospital, 5 years later, is that it was never about convincing anybody else of sustaining that drive to keep fighting, it was always about convincing myself. How can you spread some kind of motivational message without owning it first? I didn’t have it then, I don’t have it now, but I think I’m closer.
It was with such ambivalence that I wrote the contest colitis essay, as I look at so much of what I do since getting sick and think, I started doing this after I got sick, because I got sick, while being sick. I look at my little crochet wonderland and think about how it grew out of such a horrible, life-stripping, and devastating time. Everyone sees these little characters, with smiles or frowns, reads the little stories, and they have a positive reaction. I do as well, but every time I look at them, I also think about how I felt so ill at the time, that I sometimes cried while crocheting them or hobbled to the post office to mail them. And yet, there it is, something lovely and meaningful materializing out of something so awful. That disconnect leaves me so unsettled, maybe because it feels so particularly ridiculous to be crocheting a smiling clementine or ice cream cone when my digestive system is trying to commit suicide. (Then again, when I was trying to breathe my way through a painful hour-long IV, tears streaming down my cheeks, I did look over at little Safety Cone and laugh, thinking I am in so much effing pain and you are still so effing cute, just sitting there and smiling, and isn’t this all so crazy?)
This hospital stay has been downright brutal at times, on both physical and emotional levels, and right from the get-go: listening to my doctor say things like, “we have to put out this fire and then we’ll talk about your future”; getting a shot of morphine for the first time that I had a horrible reaction to, like someone giving me “Indian burns” all over the top half of my body, losing the ability to breathe, all in 10 seconds; the bruising blood-taking; undergoing so many painful IV insertions because of collapsed veins and painful infusions that make me cry for 20 minutes straight, the feeling of fire traveling through my veins; my fingertips wounded by 4-times-daily glucose testing needle pricks; my hands getting achy and numb; chest pains and other side effects from prednisone doses three times the already high dose I’m used to. I anticipated some, but definitely not all of the above difficulties.
My goals for myself while in here (come on, of course I made a to-do list as soon as my hands functioned), beyond getting better of course, were to finish reading a book, to write, to secretly paint my nails in the bathroom, to crochet. That’s it. Very personal, individual activities. But strangely enough, this has been such a social stay. Friends and loved ones visited and brought me things, ranging from vegan cookies to books to crosswords to magazines to music to cards from my mom’s third grade class to a sun dress to an entire safety cone full of goodies, but most important have been the conversations, the carrying on of some kind of normal activity. Just talking. (And have I mentioned the amazing fact that my dad has been here the entire time? Yep. And I have been channeling my mom’s you-have-to-make-your-body-disappear mind/breathing technique that she used all too many times in her own horridly ill months).
Additionally though, I have gotten to know so many nurses and staff members who inquire about my crocheting, which inevitably leads to their own craft stories and connections. A general opening up and sharing of life tales, an “are we still friends?” after the bad IVs, a baby blanket request, a “you are totally gonna have twins one day and I want you to call me when you do,” a discussion of Browning poems and a $10 dress shop in Harlem in the same breath, a shawl request, a bbq invitation, a “you are my favorite patient, everyone wants to be in your room.” What bright anecdotal spots, little silver linings I never could have imagined in this sun-less place. I look forward to seeing what happens when I finally tie the laces of my sneakers again and walk out the door.
When it isn’t people who keep me going, it’s words. I repeated the Moroccan proverb, “The world has not promised anything to anyone” to myself a lot after my initial diagnosis. I had to give up jobs, an entire career of teaching that I dearly loved, a life independent of healthcare woes, miss out on countless social things. I had to say “no” more than “yes.” But I tried to tell myself that none of those things were ever mine to have, none promised or not promised in the first place, and yet it’s no easy proverb to abide by, no matter how many times repeated.
I’ve since added a longer, more apropos quote to my brain’s stockpile, from Kahlil Gibran: “Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” If I have to be sick, the only consolation is the potential that I will learn from it, that I will be stronger for it, that I will somehow do better things with my life than if I had the ease of having one marked by good health, that I will meet amazing people and get to listen to their stories. Which is all to say, I hope I will ultimately gain something so immeasurably great that I will not harbor profound regret and bitterness for what I have lost and will continue to lose.