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.