Looking back, looking forward
I’m not one to stick to something like Oprah’s habit of listing 5 things she’s grateful for every day (i.e., I can hardly keep up with regular daily work and chores), but I suppose I do something similar, albeit on a subconscious level and give or take 1-2 things. But there are certain days or events that seem to call for reflection, which I’m sure a lot of you out there relate to as well. Maybe it’s your birthday, or a particular holiday, an anniversary or a day when something incredibly joyous or painfully sad occurred. A day that stands out and makes you think about what you have, but also that not even the firmest grasp on the contents of your life can be anything other than precarious and fragile. For me, that day is today, October 5.
Three years ago today I experienced months of severe illness finally come to a climax, or should I say denouement? Lips blue, face pale, eyes sunken, heart irregularly beating, breathing severely strained, muscles practically not working and pain that affected every inch of my body, it was just another day being in denial for me–”high tolerance for pain” is an understatement when it comes to me, so I kept on going, teaching, living, lying. Until my usually bubbly doctor, rendered speechless by my extremely low blood count and levels across the board, forced me to hospitalize myself.
It rained every single one of the six days I spent in the hospital, lying there completely conscious, but unable to walk much, forbidden to eat, and constantly on the receiving end of, “God you’re so young to be this sick.” (Colitis and anemia were kicking my butt). So many memories from these days, but one that sticks out is asking my roommate to bring me the book I was reading at the time, poignantly, The Portrait of a Lady and a notebook and pen. Even before I wrote “professionally,” I never went anywhere without a pen and at least a small piece of paper, receipt, etc. I knew this was definitely not a time to forego having such instruments, unsure of what the coming days would entail but coherent enough to realize I wanted my thoughts down on paper, and also as a way to process how I could let myself deteriorate so much without acting.
Re-reading my writing from these days brings me to tears: the stubbornness about my health, the naive disregard for or inability to appreciate my life. Was it pride? Obstinacy? A foolish belief that I was somehow immortal? The quixotic resolve that I adhere to that exceeds all logic? I still have no idea. During the first few days, I wrote things like:
“Days are blending, or rather not existing as ‘days’ in the first place.” “I kept on pretending I didn’t need help.” “So strange to feel my body shutting down over weeks and months. How much longer till I would have died?” “I screamed into my pillow at home and soaked an entire bath towel with tears when the doctor said something additionally might be wrong with my heart.” “My face is completely drained of color, except for red peeling skin around my eyes, and my hair is falling out. I can’t believe it’s me when I look into the mirror. I had stopped looking.”
One of the last things I write is a scribbled “constant blood taking hands hurting.” I had blood taken at least 6 times a day, so the veins in my arms were totally shot by the second day. So they move on to your hands. I can still remember the moment when they did this the first time. I looked on when the needle plunged into my hand, wincing in pain, and suddenly saying out loud to my mom or in my head (I can’t remember), “Oh god, I won’t be able to write. How can they do this? I need to write. Not my hands….” I cried when I tried to write after that, not even able to grasp the pen in either hand and feeling so upset by this. Every time I heard the sound of the blood-taking cart getting louder and louder, nearing my room, tears welled up because it was always for me. Pain I could handle, but the inability to express myself was devastating. I would never look at my hands the same way again, so thankful that everyday I can use them, to write, to hold a book, to knead bread, to make a pie crust, to hold a door for someone, to use period. But onto the whole celebrating life thing…
Because October 5 fell on a weekend this year, I decided to make the whole weekend a “be grateful to be alive” one. There is rarely a day that goes by now that I don’t feel happy to be living, but I figured in order to “celebrate” I would tackle those New York things I have yet to get around to doing, as well as those that wouldn’t have even been on the radar three years ago. So, a lot of “firsts” and a few old familiar favorites.
-Three years ago today, I couldn’t walk 10 feet without getting winded, so I took a 32-mile bike ride on Saturday to go see Flushing Meadows Corona Park (and the World’s Fair remnants). I was literally smiling ear to ear when I got there, gazing up at the extraordinary Unisphere against a perfectly blue sky, with that autumn chill in the air.
-I would have to quit my job at the New York Botanical Garden because of poor health, and that was also where I was when my doctor originally called me, “Alicia, ALICIA, listen to me, you have to go to the ER….”, so yesterday I went to the Queens Botanical Garden, the only NYC garden I had yet to visit, and watched a wedding.
-I would also have to quit my museum education job, so today I visited the New York Transit Museum, which explores the various modes of movement around the city, none of which I could use for a quite a while back then.
-Along the same lines, I sat along the Flushing Bay Promenade and watched planes land at LaGuardia, knowing that now I can travel when then I couldn’t.
-Three years ago today, I started a 6-day streak of doctor-ordered no-food diet because my digestive system was in shambles. Not eating for that long really dehumanizes you, to the point that I couldn’t eat even when I was allowed. I had lost that routine and still remember staring at hospital mashed potatoes and not knowing what to do, how to use a fork, how to chew. It was like culture shock. So, this weekend, I tried new recipes, got apple cider donuts from the farmer’s market, cookies from the Treats Truck, brisket and Turkish Delight at a festival and, in general, ravenously ate without a care.
To sum it up, three years ago I was alive but not living, being but not doing. Now I can claim both.







October 6th, 2008 at 12:19 pm
I try and list 3 things in my journal every night but I don’t always make it. This is a great reminder. I love your comment about living and doing.
October 6th, 2008 at 1:28 pm
Oh, Alicia…I can’t even imagine. I, too, love your closing words, and am in awe of your epic bike ride. You really are an inspiration. (I try to do the Oprah gratitude journal thing, but I usually end up listing things in my head as I’m walking to the subway in the morning…it somehow feels less redonkulously corny than writing them down.)
October 13th, 2008 at 6:56 pm
[...] In a food processor, combine both kinds of cheese thoroughly. Add scallion, garlic and pumpkin ale and process again until well-mixed. Ta-da, you’re done! If you really want to get fancy, you can hollow out a round loaf of bread OR a pumpkin and put the dip in there. I bought a pumpkin specifically for this purpose and subsequently forgot. Oh well! And those, my friends, are just a few more ways why October is my favorite month. [...]
March 31st, 2009 at 7:40 am
The quality of the info is what keeps me on this site, thanks!
December 29th, 2009 at 12:38 pm
[...] My own health calamity is a little more unpredictable and changing, not as fixed and final as blindness. But because of this I feel like I’m perpetually on a roller coaster where I’m supposed to get used to every single hill, valley, twist, turn, pull of gravity and bump as if each singular one of these is the way it’s always going to be. I try to get used to the feeling of the steepest, most terrifying hill only to be lifted up again into the clouds. This year has been incredibly challenging for me, as I can only call about 40 days out of 365 healthy ones, and even then, the experience of drug withdrawals can sometimes feel like another disease in itself. I have never worked harder at “keeping it all together” than during this year, because suddenly it felt like I had my hands in so many wonderful things and I didn’t want bad health to take them away like it has in the past. As many times as I had to hear my doctor say, “You need to rest, you need to work less, you need to be more selfish, how you take care of yourself now will affect your health later, you aren’t helping your body get better, you won’t get better this way,” I couldn’t listen. But there were many times in past years when I did nothing but rest, and I still didn’t get better; I got worse, so ever since then, I’ve adopted the belief that, well no matter how terrible this is, I want something to show for it, I refuse to stop until my body physically makes me. Of course, once upon a time, I took this too far… [...]