Last Friday morning, I was taking my usual obnoxious expensive cab to work, and the driver asked me the most annoying question a cab driver can ask, which is, “Which way do you want to go?” (I always think they’re testing me — like, “Is she a local? Or can I get away with going the long way to tack on a few bucks to the fare?” — and I don’t like being the one to make that call. I want the cab driver to know the fastest route anywhere, and to be able to tell me where there will be traffic at any given time of day.)
As always, though, my response was a very well-rehearsed, “Down Lex, cross at 79th, down Park to 72nd and then cut over and through the Park.” I mean, duh bro.
As we rounded the southwest corner of Central Park — right where the New York City Marathoners re-enter the park to cruise to the finish line — I saw my favorite guy.
New York City morning runners, you know this guy. He walk-runs every morning, no matter the weather, and in the cooler months he wears black running tights and usually a neon-green jacket. Sometimes the jacket is red or blue, but I think he favors the neon one. He’s an older gentleman with a jerky stride; a limp, sort of, that seems like it might be the result of an injury or a stroke (man do I sound like a clueless, ignorant, assumption-making asshole here…which is most certainly not my intention).
So I saw my guy.
And then I cried.
I’ve always wanted to stop and talk to that guy. I’m dying to know his story, and I think he’s remarkable. Every single day, he’s out in that park. Every day.
So that’s about where my emotional stability has been hovering. My optimism has dwindled at a rapid rate and my general frustration was turning into sheer anger and blind rage. I was less “I’m going to get better and I’m staying positive in the meantime,” and more, “Life’s not fair and I hate all the healthy people.” Seems healthy.
The week building up to Friday was a bit of a shit-storm (no puns; just no). On Monday night, I felt OK, and almost slept through the night — no night sweats, no emergency bathroom dashes. It was unbelievably encouraging. Then, on Tuesday, I had a long photo shoot day for work in Brooklyn and was totally beat by the time I got home that night.
Between 11 PM and 5 AM, I got up more than 10 times (and then I sort of lost count) to use the bathroom. Like…violently. And the night sweats returned. So that was disappointing.
I survived my Friday, riding the emotional roller coaster I can’t seem to get off of, and faced the weekend.
You may think I’d love the weekends when I’m sick because I don’t have to worry about getting to work, but it’s actually quite the opposite. I loathe the weekends, because everyone is out doing the funnest things, and I’m inside, on the couch, in the bathroom, feeling like I’m in a fishbowl I can’t escape. (Fishbowls, roller coasters…we’re all over the metaphors today. What a fun game!)
I adopted a new mentality this weekend, though, because I felt I had reached a very scary breaking point. Brian witnessed it. You should feel lucky you didn’t.
I had to change my mindset. I had to find a way to be OK with losing control of my own life; of not being able to plan things or do the things I want to do every day.
My new plan was to force myself out of the apartment. The worst that will ever happen, I told myself, is that I shit myself in public. I mean, that’s the worst case scenario, right? It’s gross and it’s darn unfortunate if it happens, but that’s the worst thing I will face. I am not going to die. Of embarrassment, perhaps, but not of actual, like, death-causing things.
So I woke up mad early (mad early? who just wrote that?) on Saturday. I was going to make my triumphant return to Bethany’s 90-minute yoga class!
And guess what happened?
Nothing bad.
Nothing embarrassing.
Certainly nothing death-causing.
I went to class, I had an amazing time, and I never had to leave the room to do Crohn’s.
As you may recall, Saturday was a gorgeous day, so I went for a walk in Central Park, and after the initial feelings of “I’m in the park but I’m not running or cycling” wore off, I had a lovely time sitting on a bench (not Bernie’s — crazy dude was parked in the shade and I was needing some sweet Vitamin D) next to a man with a cane, two ladies with walkers and one dude on a scooter. I sat on that bench with my new comrades for more than an hour just watching people and being happy to have at least left the apartment.
The little victories!
I set a slightly loftier goal for myself for Sunday: to make my hopefully-triumphant return to my very beloved Sunday spin class, also with Bethany.
Guess what I didn’t have to do during the class?
Leave the room to spend time with Crohn’s.
My legs were pathetically weak, the bike’s resistance knob saw very little action and I used the 2-lb. weights instead of my usual 3-pounders, but I was there, and I was sweaty and I was happy.
And then I was very tired. Whoa, cardio!
By Monday, I was feeling good about my weekend improvements, though I didn’t want to get too excited. I’ve trained myself not to do that at this point.
On the way to work Monday morning, I was again cutting through the park in my big yellow taxi, and I saw my guy again. This time, he was running directly over the spot where the New York City Marathon finish line sits every November. And, get this: I had my music on shuffle and the song that had just come on was one of the two songs I listened to — also on shuffle — during the marathon this year. Symbolism. Meaning TBD.
Yesterday, I went back to the doctor for my second round of the study drug (or placebo) infusion. It went fine this time: an hour of being prepped (so many pregnancy tests), an hour getting the infusion…
…and then two post-infusion hours being “monitored” while I play on my computer and try to eavesdrop on other peoples’ appointments. No, J/K, I don’t do that. Because HIPAA.
Now if you recall, I put a lot of pressure on that first appointment. “It’ll cure me!” I said. “This is the start of my new life!” I said. And then it didn’t, and it wasn’t.
So for this appointment, I went in all cool-like and nonchalant-y. Ain’t no thang. Ain’t got no tracksuit (I would’ve loved to wear it again, Mom, really and truly, but I’m afraid they think I only own one pair of sweatpants and the truth is that I own so many more than that, and some of them are animal-printed).
I woke up this morning feeling sore. Not scary sore, but my hips were tight and felt like they’d been worked.
Because they had.
Because I went for a run last night!!!
And not like, a 21-minute, three-bathroom-stop kind of run-walk thing. A real, genuine, jumping in mud puddles and generating some serious inner-elbow-crease sweat type of run. And my first “real run” since November 28.
My appointment was done by 6:30 PM, and it was light out when I left the office and also it was like 64 degrees.
So I did not think. I did not contemplate my “what should I do now?” options. I did not ponder my possibly-delicious dinner choices.
I hauled ass back to my apartment, I put on sneakers, shorts and a long-sleeved dry-fit thing, and I got out the door.
I walked to Central Park.
And when I got there, it was happy-packed with people.
I crossed East Drive at Engineers’ Gate (duh), set foot on the Bridle Path I’d abandoned for so long, and I started to run.
I ran the full loop of the Bridle Path — 1.66 miles — without having to make a bathroom stop or take a walk break.
I couldn’t get enough. So I kept going, this time up around the Reservoir.
I stopped to use the bathrooms at the tennis courts, but it wasn’t an emergency. I just stopped because they were there and it’s a habit that’s hard to break.
But then I left the bathroom and finished the loop: 1.57 miles.
I didn’t feel as awkward as I expected, but I certainly didn’t feel “fit.” My stomach was leading the way while my bum was taking the scenic route through jiggle city. Comebacks are fun! (No, really, they are. Minus the jiggling.)
I wasn’t ready to be done, so I run-skipped south on East Drive to my “happy place” near the Met, and then turned around to head back to Engineers’, and then, of course, I sat to tell Bernie all about my big victory.
From there, I ran back home and then I smiled forever.
Yesterday was a good day.
All this to say: I think I might be getting better.
But no pressure.
!!!
70 Responses
I used to coach Team Challenge for the Crohn’s and Colitis Foundation and am passing your blog along to all the awesome friends I met there. Thanks for the inspiration!
Reading this made my day. You rock!
Celebrate with some pictures of Capybaras! http://animalssittingoncapybaras.tumblr.com/
You are truly inspiring! You also just gave me the itch to start running again! Thank god it’s getting warmer out again! I wish I lived in NYC – I’d be running in the park every day (or so I say)…or I also like the west side highway path. Anyways, I am wishing you all the best!!
I am so glad you are feeling better AND are able to run! I would be sad if you stopped blogging.
I am so grateful that in May I’ll be in NYC for my “Eat, Pray, Love” tour. I haven’t seen the movie or read the book but it sounds like something I need to do after a bad breakup. Five days in the city and I plan to do a lot of running, eating and contemplation.
So glad you had a good day/run! And lets just go ahead and say that is def the Fonz.
FREAKING AWESOME!!! 🙂
YAY! [fistpump] Fingers, toes and eyes crossed. xx
I can’t remember if I’ve ever commented before. But I love reading your blog and I’m so so happy to hear you feeling even a little bit better!
I came across your website while googling some Crohn’s stuff… My almost 4 year old daughter was diagnosed in December with Crohn’s. I’m told it’s almost unheard of for a child that young to be diagnosed. It has been a roller coaster ride of emotions to be sure. I’ve read through a couple of your posts and had a good cry about the unfairness of it all. I can’t wait to get her medication figured out and hopefully get her into remission. I just wanted to thank you for taking the time to talk about your struggles and triumphs. I’ll be following along from now on.
This makes me so happy! 1.66 > 26.2
The Bridle Path is always an emotional route for me. I like to start there when I’m feeling down and out because it’s semi-hidden and people don’t have to see me struggling. Always feel better when I finish 🙂
*Hands you tiara, gold medal and magic wand*
YAY!
Hooray for the victories, no matter how big or small. I’m glad to hear you had a good day.
AWESOME!!! Way to go girl! So happy for you and your run 🙂
I totally know the guy you’re talking about. He is amazing and inspiring. I even saw some skateboarding teen tell him he was an inspiration once. He inspires everyone!!!
What a roller coaster. I’m proud of your determination.
YAY YAY YAY YAY YAY YAY! This makes me so happy for you! Fingers crossed, but regardless of what happens next, stay positive, and stay in this new mindset. Because placebo or not, that is what will get you through this and any difficult chapter(s) in life. Promise. Been there (and lived to tell the story).
AHHHHH YAYAYAYAY! Over the moon with joy for you!! So glad you had a good weekend! :0)
That’s wonderful! where do you get your great sweatpants!
Reading this just made me so happy! So happy you felt like yourself, even for 51 minutes! Long time reader, first time commenter, but I was thinking if you this morning, wondering how you are 🙂 I’m also a fellow Crohnie. You kick ass girlfriend!
I totally know the guy you’re taking about, and I want to know his story too!! He gets out there every day, nothing stops him. And congrats.on your run… Am pulling for you!!
great to read this! was definitely not HW!
Hahaha dang ittttt.
Wonderful! (and so good to see pics of the park).
This makes me happy<3
OHMYGAAAWD I’m so happy for you!!! Seriously I get teary-eyed whenever you get a little victory. As a Crohnnie for 15 years, I feel ya in the dark times and I love to hear about the good times. Keep pushing!
new to your blog and I love it. So happy you are feeling better, you are an inspiration. Keep going
Yay!!!! 🙂
I don’t think that’s the Fonz at all…
But YAY!!!!
Haha oops. Sorry, random guy!!
so so happy to hear of your victory! I was diagnosed last July and have been keeping up with your blog ever since. It’s been such an encouragement. I get what you mean about the weekends…I am actually home for spring break this week to start my humira. fun stuff…but fingers crossed for both of us!
I am smiling from ear to ear for you!! Congrats!
whoo hoo! I am super happy for you.
and i think that IS the fonz!
this is AWESOME 🙂 HOORAY! And people watching is the best game EVER.
I have missed you and your charm,wit, and highly entertaining posts.
I would totally try to eavesdrop on other people’s conversations- love people “watching.” And hate when taxi drivers don’t know how to go!
I’m glad things are looking up! I agree with the people above who said that they would miss your blog! I’ve been a reader, never commented before, for a while now! I was diagnosed with Crohn’s a little over a year ago and am still trying to find something that works. Your blog is the most honest and relatable blog I’ve found, and it’s really entertaining to read! Just wanted to stop by and say I love reading your blog, and that I hope you continue to improve 🙂
tehehehe… “Because HIPAA”. So funny, I work in healthcare and really chuckled at that.
LOVEEEEE this post!! So many fun things and no pooping of the pants! Go girl!
I hope this is just the start of many good days!
High Tens for the little victories! I hope they come more frequently!
Ohhh! I am so happy for you! I couldn’t possibly understand what you go through every day, but reading this, I can FEEL your happiness, relief, joy…AH! I am so happy for you 🙂
I’m 100% sure I know which man you’re talking about! I absolutely <3 seeing him out there, more bad ass than anyone I know. I want to be him when I grow up.
Ali,I am so so happy you are feeling better. I started following your blog last summer. To hear how sick you’ve been breaks my heart. I think of you often. So so glad this med. might be working. Keep up the hard work getting through each day. You have a lot of people pulling for you !!
WOOOO HOOOO happy juju that you get a reprieve!
Yay! Comebacks are fun! I’m so happy to hear you sounding so positive. 🙂
So happy for you! Hope it’s the beginning of more good things to come.
I have to second what sally@sweatingoutthesmallstuff says up there — you have warned us you might stop this blog, and I would learn to be OK with that, but not really. I have several blogs I follow, all by women, all by runners, and they’re all special. I would really miss your ‘voice’ and your humor and your animal print pants. I guess I’m trying to say that you have a lot of people (your readers) on this journey with you, and it would be sad to have to say goodbye.
so happy for you!! love reading about your victories, and so admire you for pushing through despite the worst of obstacles. here’s to (hopefully!) many more happy running adventures for you this Spring.
Congrats on your awesome run and workouts. I am sure there will still be tough days, but you will persevere! Try to keep that positive outlook when you feel like you are in your deepest, lowest spot, because that could just be the best medicine for you. Hope to see more running post from you, I miss them (as I am sure you do too)!!
YAY!!! This just made me so happy! You go girl 🙂
YEY!!!!!!!!!!!!!! This has actually made my day!!!! So happy for you!! 😀 xxx
MORE GOOD DAYS FOR YOU PLEASE
Yay for a great run, spring temps and small victories! I am headed to NYC today. Bummed that I am bringing the cold with me!
Here’s to a great weekend! Wishing you well!
!!!!!!! YAY !!!!!!!
I hope that you have many more days like this one and weekends where you are getting out and doing what you want.
Please don’t ever stop blogging. Your journey through this illness must be so difficult but it is helping others to “check” themselves. You know? Like, stop bitching about the silly things. I have learned so much about crohns. And you tell your story in the realist way possible. Ups and downs.
I will have to sit on Bernie’s bench one day.
My company is taking photos of us for our website and they asked that we pick our favorite NYC location for the photo. I asked to be shot by fred lebow right inside engineers gate wearing my NYC marathon medals. Running can become such an amazing bond almost like a best friend. So happy you had that run.
ha – as a vagina doctor I can tell you how dilated your cervix is but not so much on the study drug vs placebo.
but yay!!! regardless!
so, whens our next run date?
OMG! Crossing all fingers and toes that this is indeed the start of you getting better (I’ll be walking really strangely…). 🙂
HELL YEA! So excited for you. I know it’s been a long frustrating road and you have a long way to go, but Ali…what an amazing story you have to tell. Somewhere someone is reading this and they are finding hope bc of you. They are inspired bc of you. They are willing to keep fighting whatever crap they are going through bc of you. Your optimism and willingness to see something, anything good in the middle of a dark time is inspiring. Thank you for writing! You have fought long and hard. So happy for you. 🙂
So happy for you that you were able to do that run! It’s the little things in life.
My heart stopped a little when I read the title of your post and I held my breath as I read because I was hoping the exclamation points were about what I was hoping 🙂 yay yay yay!!! Hopefully there will be more posts like this coming 🙂
I am happy-crying for you right now, you amazing, wonderful lady!! I have my fingers crossed for you, congrats on that awesome run!! And the yoga and spin class of course 🙂
I hardly know how to comment because there is so much here to celebrate (yoga! spinning! running!) but your ‘breaking point’ moment sounds so utterly horrible that I just want to hug you and I don’t know you so that would be weird. So I’m just going to celebrate the running.
You know, I totally understand why you might want to stop blogging…but please don’t. 🙂
I lived on the UWS for 4 years and I used to see Henry Winkler on a fairly regular basis on 87th street. I think one of his kids lives there.
WAHOO!
Congrats! And did you see the big Crohn’s news today?
http://www.npr.org/blogs/health/2014/03/12/289041150/mix-of-gut-microbes-may-play-role-in-crohns-disease
Here’s hoping it’s the first of many! And that it’s something great to remember, even on not so great days.
Very happy for you.
Glad to hear you had a great run and it sounds like you’re feeling better. That is awesome!
YAY!!!!!!! 😀
Such a great post…made me smile for you–your excitement literally leapt through the blog 🙂 Here’s to hoping that things are on the up and up
YAY RUNNING!!! I’m so happy that you’re able to get back to normal a bit, even if you’re still not totally healthy.
Great to hear that you went for a run 🙂
I wish I could to today (beautiful weather here) but unfortunately my body doesn’t make it to the corner store….. But one day 🙂
YES!! I’m so thrilled to hear about your run and your yoga and you feeling a little better! Oh and in my super professional opinion that totally looks drug-like.