Bend with the wind and do not break
After 4 months away, I was almost scared to go to New York, scared I would fall in love with it all over again, scared that I wouldn’t. I think both happened, or possibly neither–I felt neutral and apathetic. I had gone to the doctor’s the day before leaving on a train. The timing of this appointment was not ideal, as it confirmed what I already knew–that if this new treatment I was on failed again as I tapered off of horrible prednisone, I was done. Game over. Colon removal surgery time. And even though I was feeling okay, there was a good chance it was going to fail because of my disease history.
I got in the car and pulled one of those straight-out-of-a-movie moves–I put my head on the steering wheel and cried. I would treat the upcoming trip (Philadelphia for a book event, New York and beyond) as a last hurrah, which is pretty much how I’ve always treated everything, pre- and post-illness–not in a morbid way, but in a carpe-diem way. I would do anything and everything, I would make ambitious to-do lists, I wouldn’t worry about sleep or making firm plans. Yet another instance of feeling like a ticking time bomb, and trying to pack it all in. Sucking everything I could out of life because it was always being sucked out of me.
I pretty much did everything I wanted to those two weeks, but as I crossed people, places and events off my list, collected fall leaves from every town and put them between the pages of whatever book I was reading, I came home–whether that be a friend’s apartment, a hostel, etc.–many days feeling unhappy. And the fact that I was feeling this way, after doing exactly what I wanted, made me even unhappier. Why did I feel like this? Was it yet another emotional side effect of steroids? Was it knowing that it would all soon end, because somewhere in those weeks I felt it starting to go downhill, so I knew for sure it was over? Enjoy it while it lasts–it won’t last. Can you really enjoy things when you hear that ticking?
It was a small taste of what life used to be like, flying by the seat of my pants, running around everywhere, not knowing where I’d be the next hour. It was like being a bird finally let out of the cage but told that I must return, like those patients in the movie Awakenings. It’s almost easier to accept one’s limits and live within new boundaries, to tell yourself that this shall be your new sense of normal. And yet, that is exactly what I always hated about all of this, the forced changes, this new person you had to get used to being, this life that you never chose. It’s what the literary critic Anatole Broyard said so perfectly, “It may not be dying we fear so much, but the diminished self.” I always told my doctor something to that effect, about the difference between being alive and living. If I ever got to the point that I thought I wasn’t doing the latter, I’d end it all because that, to me, would be death.
Looking back, not just on this trip but on these 6 years of being chronically ill, I can’t help but think that so much of what I have done has been to prove, to myself and myself alone, that I was, indeed, living. One giant to-do list that I compulsively added to. Accomplishing things just because I could, getting my foot in the door just because I could. All sincerely done, all things I was interested in (I think?), but done nonetheless so that I would hate this illness less. Making use of every minute of every day in the best possible way. Paying my phone bill solely with money made from selling crochet safety cones with viking hats, knitting a scarf entirely while waiting in doctor offices. Appearing so ambitious and driven to the point of frequently hearing people say that my ill but full life made them feel lazy and unaccomplished. (Gee, thanks for the extra dose of Catholic guilt). All the while I was just building up proof that I was living so that I could not rationally arrive at a decision to end it all, because, look at everything I’m doing! A diminished self? Doesn’t appear that way.
When I was younger, I used to prepare for injuries and conditions by pretending that I had them. I’d brush my teeth with my eyes closed, I’d hobble down the steps on only one leg, I’d practice cursive with my left hand. I never had fear about having to use these skills in the future, I wasn’t even particularly paranoid about illness, but I wanted to be ready. I didn’t want my life to be so drastically altered if something terrible befell me. Every time I got novocaine on one side of my mouth during teeth extraction (and I had a majority of them pulled because my baby teeth did not want to come out on their own), I decided to practice having an “Elvis lip.” For that hour before it wore off, I moved the non-novocained side up and down. I can still do it till this day, because I strengthened my lip muscle on one side! Everything was an opportunity, an opportunity for an experience, to develop some skill or talent, to learn something, to get better at something. Neither good nor bad, but just things that happened, and something in me, very automatically and without articulating, said, “make the best of it.” The articulated phrases would be picked up later–when life gives you lemons, play the hand you’re dealt, live the questions.
Well, I never prepared for living with a chronic disease that 6 years later would lead to me having to get my entire large intestine ripped out. I definitely did not “practice” for what ulcerative colitis would do to me on physical and emotional levels, what it would take away from me. And here we are. Having exhausted all drug/treatment options, surgery is no longer a choice but a must. Or it’s game over. But even though I don’t have a choice in these matters, I am still running it all through my head as if I do, i.e. I guess I haven’t arrived at Kubler-Ross’ Acceptance stage yet. And this is because I cannot ever accept how it will change me. The hospital always threatens to turn me into a diminished self, a body that is merely alive, sometimes not even taking in any food for days, and so dependent on machines and tubes. Which is why I feel more driven than normal in there, crocheting till my IVs bleed, really looking at the “art” on the walls, getting to know the nurses, reading complex books. This time, more than ever, that threat will loom, because I will experience unimaginable pain and I know for a fact that I will not be able to sit up, to walk, for days. I will be stuck with my thoughts and the physical horror of it all. Thinking and feeling but not doing. I will again not have any choices and will have to accept that my life as I know it entirely depends on getting through all of it, and as a diminished self. I hate the thought of it. Absolutely hate it.
The first year I was sick, and spent a week in the hospital during the prime of autumn, I thought about this place my parents took us to called Cook Forest. I think we went every fall, climbing to the top of the fire tower that was there, hiking around, collecting leaves. I hadn’t gone since before I was sick, and for whatever reason, I planted in my head the desire to get back there, that if I ever got healthy, I’d go to Cook Forest again, collect leaves, climb that fire tower and look out at the Pennsylvania mountains. This year I finally did it. While there, I learned from my mom that my grandma’s uncle took a similar excursion with a health-related component (he had polio). He decided he wanted to go to Cook Forest and get a hemlock seedling. How funny and odd, to think that this I-have-to-go-to-Cook-Forest desire could somehow run in our blood. While in New York City this time around, she emailed me the whole story, which is perfect in so many ways and which I hope will help me in the upcoming days:
…one leg was longer than the other and one arm was stronger than the other. He was determined to walk again. To push him to this end, his parent’s bought him a bicycle. Mom said he would get on it and fall off over and over. He kept trying and mastered it. When he got older, he bought a motorcycle. He did go to Cook Forest and he did indeed bring back a hemlock seedling. He planted it beside my side porch. At that time this address was his home. You are aware how beautiful and tall it now is, soaring above the house’s rooftop. There is a lesson in going with the flow from hemlock trees. Someone once said we can learn from hemlocks. When there is trouble and strife and we do as hemlocks do, we bend with the wind and do not break. However if we fight against troubles and look at the dark side, we are like a stiff tree that doesn’t bend but breaks with the opposition. So I look at that hemlock, knowing its history and learning to bend with the wind and carry on.
In the interest of not completely breaking, I hope I can think of myself as “bending” rather than as a “diminished self” through this all.
December 9th, 2010 at 11:45 am
This is so wonderfully written and incredibly touching. As you lay in your hospital bed recovering, keep the lesson of the hemlock in mind. You will bounce back and many new adventures lay in store for you once your body has healed from the surgery. My thoughts and prayers are with you.
December 9th, 2010 at 12:20 pm
Sweet Alicia, your words expand far beyond this little space on your blog. You find beauty within the pain. This may not seem like a ‘choice’, but it is a choice to endure the unbearable to make *living* a continued possibility. Control over your physical self eludes you in unimaginably, incomprehensively huge and devastating ways, but thinking of what you are about to go through as a choice and the decision to go through it as taking control can provide deep mental relief. Coming from someone who has been in a similar place. *HUGS* Sending your heart lots of gentle, loving hugs. xoxo
December 9th, 2010 at 7:42 pm
You simply amaze me, Alicia. Not that I have anything to do with your awesomeness, but I’m incredibly proud of you right now. I think “bending” like a hemlock means texting me with your cell phone from the hospital & continuing to ask me questions about stuff. What do you think? Love you lots!
December 13th, 2010 at 11:29 pm
I was so surprised that the woman who has been making these charming crochet traffic cones has been suffering from a horrible illness all this time. I met you once in the streets of Tribeca where you had taken over a parking spot with your art. I want to thank you for the happiness you’ve brought me, just by looking at your adorable orange balls of delight. I want to wish you well through your surgery and recuperation, and I send you streams and reams of prayers and good karma and hopeful thoughts. I am thinking of you and wishing you well with all my heart.
All the best from Harlem, NYC
December 14th, 2010 at 10:54 pm
such power in your words. and i love the story about the hemlock tree. what an inspiration you are. on so many levels.
it may not feel like you have a choice in any of this, but you do get to choose how you wake up each morning. your strength and courage in fighting this illness has been inspiring.
sending you healing vibes, good thoughts, and lots of love.
December 14th, 2010 at 11:22 pm
You will be on my mind Alicia as you face forward into the wind. Your words have an incredible power to inspire. I hope you have as speedy and as little pain as needed recovery.
December 15th, 2010 at 9:59 am
Marina (your cousin) just stopped into talk with me. I am one of her teachers and I also have ulcerative colitis. She felt the need to talk with me about your surgery that is today (unless they change it again). You have been very brave and I certainly understand alot of the emotions you have dealt with. I plan to look at your directions for crocheting and knitting as that is a great way to deal with all those waits in offices.
My thoughts are with you as you head to a different stage in your life. Hang tough as I really feel that attitude has a lot to do with dealing with this shadow that lurks.
December 15th, 2010 at 6:13 pm
Alicia you are without a doubt one of the most inspiring and amazing people I’ve ever met, perhaps even more so because you aren’t even trying to be. Just by trying to live. I’m just so thankful you are in my life and I’m keeping you in my thoughts and hoping for a day not too distant when you can go to cook forest as often as you like. And you know when you are up to random adventures again your partner-in-crime in mexico is always ready to have you down here. Wishing you a very speedy recovery and a much healthier future.
December 16th, 2010 at 12:48 am
I recently purchased one of your wonderfully happy safety cones & hat patterns as a Christmas gift, which led to happy reminiscing & bonding with my mother over projects from my childhood while searching for yarn, & my rediscovering the joy of crocheting, which I haven’t tried since I was very young.
I’ve spent the past couple of evenings happily crocheting tiny hats while your safety cone smiles approvingly.
I know that this one little cone will provide even more enjoyment on Christmas when my sculptor friend who collects hats, & has a fascination with industrial safety meets & adopts him.
I just clicked on your blog to find out more about the creator of these wonderfully happy crocheted creatures, & found this post. I wish you all the best, & wanted to thank you for all the enjoyment that your little safety cone has brought into my life…..& that’s just one little cone! Imagine all the joy & smiles that you have spread throughout the world with your creations : ) I find that remarkable!
Best wishes on a speedy recovery : )
January 6th, 2011 at 1:42 pm
Alicia, thank you for writing from your heart and revealing your creative and rugged spirit. I want you to know my heart is with you as you heal from a dramatic surgery and begin to create a new way of living in the world. Those of us with significant physical challenges so often have to dig deep to discover our own inner strength, a process you well know. I send you love and strength through the air waves.
January 12th, 2011 at 1:26 pm
[…] anything, on this disintegrating body. My grandma brings me an arrangement of hemlock from the infamous hemlock tree. Bend, do not break. Bend, do not break. Know and feel the difference between giving up and giving […]
January 29th, 2011 at 7:47 am
Very inspiring article. I hope all is well… God bless
April 15th, 2011 at 8:42 am
Bend with the wind and do not break,
your post is very touching and inspiring, I wish you a speedy recovery and to believe God with us.
Good Bless You
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