“When you’ve been sick for so long, you forget what it feels like to be healthy.”
Wise words from my friend Jess, who also happens to have Crohn’s-Colitis, the disease of digestive underachievers everywhere.
Back in May, when I was in “Desperately Seeking Doctor” mode, Jess called me to help me out with my quest for a new doctor and my miracle drug (still searching for that second one). When some people offer advice regarding this disease, I’m completely unreceptive. Unless you’ve been in my exact situation, I just don’t want your “genius tips.” Thank you for trying, but also no thank you.
Jess, however, gets it.
We met back in 2009, when we had both signed up for our first half marathons — Napa to Sonoma — with Team Challenge, and she was the first and only person I ever knew who had been diagnosed with both Crohn’s and Ulcerative Colitis. Way to go, Jess!
My point: What Jess said to me on the phone back in May really stuck with me.
I have been sick for so long that I’m having a hard time remembering what my “normal” life is like. Since January, my days have revolved around trips to the bathroom, visits to the doctor, pills, IVs, steroids, tears, more trips to the bathroom, medical bills, missed days at work, ruined vacations, missed vacations, ruined runs, missed runs, missed races and essentially watching my life and the things I love slip away.
Plus more trips to the bathroom. And more medical bills. And thus more tears.
Lately, though, I’ve gotten a few glimpses of what my former life used to be like, and I must say, it’s been kind of amazing.
Last weekend, Brian and I went to Bob’s Discount Furniture to finally buy a new couch — something I’ve wanted to do for a long time.
I hated our previous couch. I spent entire days laying on that couch, with chills and then sweating as my fever broke. I spent nights sleeping on the couch so I wouldn’t wake Brian with my every-five-minute bathroom trips. I never got off the couch except to use the bathroom, and eventually I associated the couch — “The Crohn’s Couch” — with being sick. I couldn’t wait to get rid of it.
We also bought a new friend for our apartment. I love him and he brings joy to my life every day.
After we got our new couch (yay!!!), we decided to go out to dinner — another thing I refused to do for a long time because I couldn’t leave the apartment. As we crossed the street to get to the restaurant, we held hands and we were laughing and I just remember thinking, “This is what my life used to be like.” It was like this miraculous glimpse — a wake-up call — and a reminder of what things could get back to when…if…my disease ever goes into remission.
And now we have a new couch, and it doesn’t remind me of Crohn’s or fevers or misery. I want to sit on it forever.
There have been other glimpses of a return to what I think “normalcy” is like…
I’ve gone to work events. Summer is a busy time for dancers, and while I’m still technically on medical leave, I have forced myself into a fancy dress a few times to go support my favorite dancers.
I’ve done the dishes, swept the floors and done some serious dusting. I hated that when I was at my sickness peak, I was home all day but the apartment was a devastating mess. Brian and I even did something I swore I would never do: We hired a cleaning service. And the worst part was that when the cleaning people came, I would be sitting on the couch while they worked. I was too sick, too exhausted and too useless to be able to clean, and I hated that someone else had to do it for us. Now I’m back in control of the Lysol Wipes and it’s wonderfully empowering.
I’ve gone for walks and made pit stops to ride rides. Yeah, that happened.
I’ve gotten back on my bike!!! Cycling is so much gentler on my stomach than running. I’ve taken the Lexa out a few times in the past two weeks and I’ve remembered how much I love clipping in and pedaling my way around Central Park. I even tried to get Brian to sign up for another century ride with me, but it’s a month away and he suggested that’s “not a good idea.” At least it shows my return to optimism and positivity? Or sheer delusion…
The doctors love giving me drugs, and they think that each dose of whatever is going to aid me on the road to recovery. But I think they’re wrong. I think the real medicine I’ve needed is a little bit of laughter, a hefty dose of fresh air and a perfect escape from New York City.
Last Thursday night, I ventured out of the apartment to watch my friends compete in their Dizzy Bat competition in Central Park.
I loved being out, I loved seeing people I haven’t seen in so long and, best of all, I loved laughing harder than I can remember laughing all year. It just felt so good.
As they wrapped up their dizzy batting and headed to the bar, I decided to walk around the park.
I happened to be wearing new running shoes I ordered months ago and hadn’t taken out of the box. They paired well with the giant goofy grin I was wearing.
When I found myself at Engineers’ Gate facing south, I decided to turn my walk into a run.
I ran to Cleopatra’s Needle, and then down Cat Hill. I turned right onto the 72nd Street Transverse and saw my long-lost friend Lindsay. I kept running, goofy grin firmly in place. I ran a full lower loop of the park, and when I faced Cat Hill again — this time from the bottom of the hill — I kept running.
Soon I was back at Engineers’ Gate.
I had run a full lower loop of the park and back without stopping.
I visited Bernie’s Bench to tell him all about my run, and then I ran home.
I ran 4.42 miles.
I used zero bathrooms along the way.
On Friday, I hopped on board the Seastreak ferry bound for New Jersey.
I spent the weekend in a state of ultimate relaxation at my friends Kristan and Will’s beach house. We beached, we pooled, we (I) napped furiously and we went to a concert on the beach.
Best of all?
We ran.
On Saturday morning, Kristan took me to a trail that has a name that I can’t remember.
Kristan is a 2:53 debut marathoner. We did not run together.
I ran mostly alone, with the company of my buddy Steve for the last mile or so.
I had to make two bathroom stops, which I wasn’t thrilled about. It was a hot morning and I felt dehydrated.
But that goofy grin was back and I couldn’t seem to wipe it away.
It was there during my first mile.
And it was there when I finished my sixth mile.
A few weeks ago, I ran for the first time since getting sick. I ran 1.57 miles around the Reservoir, and my average pace was somewhere around an 11:45-minute-mile.
One week later, I tried to run around the Reservoir again and failed miserably.
One day later, I tried again and failed. Again.
I was heartbroken, frustrated and convinced I would never be strong enough to run like I used to.
Last week, I decided I definitely would not be running the Wineglass Marathon in October. I’m absolutely fine with that decision. After all, I’m still registered for another kind of big race in November.
Then, on Saturday, July 20, I ran six miles.
I ran six perfect miles with good friends waiting for me in the parking lot when I was done.
I ran six miles in just under 54 minutes.*
Don’t call it a comeback. Not yet.
Just call it a glimpse of something really, really good.
*No, I’m not running with a watch. No, I’m not running for time. No, I don’t actually care about my paces. I had the MapMyRun app running on my phone to keep track of my distance, but didn’t check the time or pace until I was done. I don’t have a training plan or a goal or anything in mind other than “run when you can and enjoy it.” Relax. I’ll do the same. Go team!
54 Responses
These are some HAPPY HAPPY glimpses my friend!! And I do believe I have that very couch in our newly donned ‘man room’ (my old couch) – super comfy 😉
I love that couch and this post and your Friends reference. (That is one of my all-time favorite Ross moments; it may only be trumped by his leather pants…) Sounds like things are looking up! You’re such an inspiration 🙂
Glad that something is finally working to help you feel marginally better physically – which then allows the working out to help with the mental part. 🙂
Obviously there’s still a lot in front of you – but hopefully the majority of sick days on the couch are now BEHIND you, and you can ring this couch in with popcorn & movies with Selena, FaceTime with your fave kiddo (who somehow managed not to make it into this post ?!?!), and ZERO night sweats. Here’s to hoping!
“I visited Bernie’s Bench to tell him all about my run”
hahahaha!!!
Sounds like you’re having some good times, at last. That’s great.
I know you aren’t back to where you want to be, health wise, but I’m SO happy to hear you’re at least enjoying things a little more than you have been. I’ll keep crossing my fingers and toes that it only goes up from here!
Rock that goofy grin! You’ve more then earned it!!! When I’m having a bad/sweaty/hot/humid run, I think of you and I’m just happy to be out running!!! Thank you for giving me some perspective. I have NO DOUBT you will be up and running regularly in no time!!!
You don’t know me… but I’m so happy to read that. 🙂
It’s funny how reading about a complete stranger on the internet can make you care that much.
As soon as I saw the couch I thought, ‘she better say PIVOT!! somewhere in this post’ haha. That episode was on the other day and I made John watch it not sure he appreciated it as much as we do.
So glad you are feeling even a little bit better and getting even just a little bit of normalcy! I think about you every day hoping you are feeling better! (I even had a dream about you last night haha, and no, you weren’t sick in my dream, we were chilling in NH, that’s all I remember). Phone date soon please. Miss you tons! Keep on gettibg better!
Glimpses are good. Glimpses are something. I really hope you get to see more and more glimpses until they become the norm.
What great news! I’m glad you are having some positive days.
Ali,
I am near tears reading this. Nothing but positive thoughts that you will continue to heal! Thank you for sharing. I know you have to be helping others that are down, regardless of the reasons.
This sounds so much like the old Ali and it is great to read/hear it again. I hope this the start of good times for you. xx
Welcome back Ali. Baby steps, enjoy the journey and your 6 mile run in 54min is super speedy!
Halleluia!
wheee!!!!!!!! happy for ya! (well, not the vein scar tissue, but the running, couch, giraffe situation). Also, thank you for the “PIVOT” friends reference.
Wonderful! You’re so inspiring…I hope you see many more glimpses of health in the near future!
Woohoo!! I’m so happy for you 🙂
1. YEY! I know you’re not back to normal, but I’m still happy for you!
2. Your new couch is gorgeous, I am seriously jealous!
3. Holy cow, 6 miles @ 9:00- AMAZING!
Get It! That’s all I have to say 🙂
so happy for you! let the good times roll
SO much happy stuff in this post! I’m so glad for you. And HOW speedy is your friend???? That’s ridiculously fast!
It’s so good to hear happy news from you! I hope you stay on the upswing!
YAY! Congrats!
I love that you’re feeling better — and that you are laughing again and having some great fun. You deserve it!
I’m glad that you are finding some relief and are able to laugh again!! I look forward to reading your blog posts, so hopefully you will be able to write more happy posts 🙂 There is a half marathon in Vegas on November 17th for CCFA…maybe if you’re up for it???
YAY for good runs! I am so happy that you are having some normalcy again. I love the new couch and all the smiles in this post. <–sorry I am a cheeseball.
I love this post! Almost as much as I love you!
NOW COME TO VERMONT!!
Sorry, I’m just all-caps level of excited about the fact that you’re slowly starting to feel better. I just need you to come up here and visit…otherwise I’m showing up at your apartment, claiming the corner seat of your new fabulous couch and refusing to leave until you agree to come north with me.
Sweet, happy, hopeful Ali! I hope this continues for you!
I just have to say your positivity through this all shines through and is amazing. Reading what you are battling through makes me feel like a brat complaining about having an off week of running last week. Hoping this is a road to feeling better and better!
This is great news! Glad you are feeling better and having some great days!!
1. I have always wanted an “L” couch and I am SUPREMELY jealous.
2. Run if you want to. I don’t know why you even had to star that last part. People be crazy. RUN BECAUSE YOU LOVE IT AND FINALLY CAN!
3. This blog post made me really happy.
4. I don’t know why I commented in list form, but I know you like lists so…you’re welcome?
5. I hope you keep feeling better! The end.
I LOVE LISTS. Thank you for understanding my likes and dislikes and acting accordingly.
I added the last part because when I mentioned my time/pace/distance ever-so-casually in a previous post, a few people said I shouldn’t be caring about my pace since I’m just coming back from being out for so long and blah blah all the blahs. So you know, just throwing the disclaimer up there like a slap in the face. Or something.
We’ve never met in real life, but I woke up thinking about you today – not in that creeperish way, but because sometimes we just want to know that the pain others are in is subsiding. I am SO WOO-to-the-HOOOO happy for you! Smiling is great great stuff. Sorry you won’t be here for the Wineglass, but I’m still prepping and will be thinking of you. In the meantime, smile on!!!
your last glimpses….the 6 miles and the VZ bridge…..I’m all fuhklempt….the same type of fuhklempt I felt yesterday morning as a 13 year old girl sang the national anthem at the kickoff of the Queens 10K. I am rootin’ for you and know that while Crohns may have won some of the battles you are FOR SURE going to win the war. I live in S.I. and that bridge is my weekend connection to my running group who I usually run with in either prospect or central park. The running friends that keep me together when I feel sad or overwhelmed. Oh and i’m also planning on participating in that big november event that starts at that bridge 😉 You heart sweat and I heart the VZ. And I heart that you are having glimpses. Now i’m going to grab a tissue and get back to my monday madness at the office. I think we should translate “may you have more glimpses to come” in Latin. Just so it will sound cool like Carpe Diem. =)
I have been following your blog for a while, because I love your attitude and you make me laugh. This post made me smile because it’s amazing what good times with friends and conquering personal goals can do for one’s mood. It’s the little things that count (:
So excited for you! And so excited you’re getting to enjoy the bright green Adrenalines! They’re my favorite. If anyone from Brooks is reading, never ever ever get rid of that color!
I feel like a goddamn celebrity in this blog post! I’m so happy I could be there to facilitate some happy moments and see you feel healthy again. I really am seriously proud of your run, or else I wouldn’t have let you talk about it between beach naps. Hopefully many more great feeling days (with cupcakes) are ahead!
So happy you are feeling better and I love your couch! We have a similar one and love it. One piece of advice, establish with Brian from day one that the corner seat is yours for all movies and TV marathons. We refer to the corner as “the sink hole” because you can comfortably sit there for hours.
Yay, Ali! I think having a good couch can really change your life. And I can say this as an expert, as I spend many hours on my couch, snuggling with the cat and generally being a hermit. Also: PIVOT!
Creepy Derek Jeter mask = cure for Crohn’s. I expect the Noble Prize for Science any day now… Glad things are looking up for you!
This is simply fantastic and amazing all rolled into one!!!!
This was a great post to start my Monday off with. So glad to hear the positives are starting to outweigh the negatives (at least in your writing – hopefully reflective of what’s to come sooner rather than later!).
Best post I’ve read! I’m so happy you’re finally seeing some light and having such a good time! Makes me smile!!
Really happy you’ve been able to run a little and are having a few glimpses at normal days. I hope you keep getting better!
Yay! I’m so glad things are looking up.
If it makes you feel any better, your Crohn’sy running pace is faster than my turtle runs. Congrats on the new couch and getting some much-needed run time in!
Karen I was thinking the same thing. My fastest speed workout when I’m feeling healthy doesn’t get me anywhere near a 9 minute mile. =)
This post made me so happy! Your beach weekend sounds like my idea of heaven. Really glad to hear you had so many great moments with friends and loved ones in the past several days 🙂
The couch is super cute and looks very comfy – corner spot IS the best spot! I love reading happy(ier) updates from you – fingers still crossed you get more relief from your nasty disease! Congrats on your runs too…as in running not, oh you get what I meant! =)
That’s wonderful! I am so happy for you. I love the PIVOT reference too. I think I’ve watched every episode of Friends at least 50 times. (Hmmm, my life may be a little sad.)
Glad to hear you are running!
Can you get a medi-port put in to get your infusions? I have terrible veins and have been having chemo since January and the port is a life saver.
I love that couch! That is the kind I want.
I am glad you have been feelling a bit better.
Ali I am so happy to read this post. You are way to wonderful and so full of joy to keep putting up with chrones crap. I know it’s been hard, and honestly I can only sympathize because I have never had to walk in your shoes before. I am glad you are on the road to recovery and getting to live again. So happy for you!