Once upon a time I thought all I had to do was get through chemo and figure out how to live without friends and lovers I’d loved and lost. I mean, that sounds like enough?
Look at this picture from May 2017. I was so sick and tired. So tired. I was a week out from my last IV chemo treatment and I’d just finished the 40+mile 5 Boros Ride in New York City on a borrowed 40-pound bike. I was no kind of warrior, no.
I finished the ride through all 5 NY boroughs (it’s amazing and you should totally do it), I leaned my bike against a tree, and was stumbling through hillocks of wet grass to what looked like a RAGBRAI beer garden — an area cordoned off with snow fence and full of tents of food and, what I desperately sought at that moment, picnic tables with plenty of open seats.
I met these folks on the way to the entrance of the fenced area and just had to have a picture. Martini helmets! My people! Asking a stranger to take a picture of me with more strangers isn’t something on my normal do list, but there is a certain boldness when you’re sick and completely out of fucks.
When I look at this picture, I feel a tremendous nostalgia. Oh, to only need now what I thought I needed then — just a little time to “get over it.” Just a few months of bike rides to get back to — LOL — “normal.”
It’s been impossible to get ahead of anything, really. It’s been three years — three years! — of headwinds. But also three years of clear scans, three years of unflagging support from family and friends, three years I still have a job when thousands of my colleagues were laid off. I’m still here and I know I’m lucky.
And now this picture. I was just as wet and rained-on in 2019 New York, but 2 years beyond that almost-indescribable exhaustion. Fatter, wiser, closer than ever to my East Coast 5-boro-riding sisters Rache (ONE DAY WE RIDE IT AT THE SAME TIME) and Brenda (ONE DAY WE GET ALL 5 TOGETHER).
The 2020 ride was cancelled, of course, though with NYC shut down, the streets have never been more amenable to bike rides. 2017, 2019, maybe 2021 should be my next attempt, eh? And what will I have learned by then? Will I long for how good I had it now?
Preview: this durable, grippy tape is easy to apply in your choice of “High Grip” or “Max Grip.”
I never thought of bar tape in any terms other than “thicker, plusher, fatter,” or maybe more or less likely to tear when I dump a bike and the handlebars get dragged through some crushed rock. Since I never PLAN to crash, I honestly thought the point was to get it as cushy as possible, and I certainly never encountered tape that could be modified based on the direction in which it is wrapped.
It goes without saying I have very little experience tricking out my own bikes. I used many excuses in the past, including the — valid! — reason that I want to support my local bike shops. It’s been a long time since dressing a bike meant clipping playing cards to spokes and streamers to the back of the banana seat.
But the truth is that I was afraid to do things myself because I didn’t know how, didn’t want to ask, and didn’t want to do something wrong (set a tire improperly and it blows on a 40 mph gravel descent? Uff da!) or do something “wrong” and catch shade. This is an industry that shames for sock height! I’ve been on the receiving end of social media shaming because I posted a shot of my bike chain-side in, FFS.
Pre-social distancing I haven’t been shy offering 6-packs or ‘za in exchange for a lesson. But in the current environment, I’ve resorted to Park Tool videos on YouTube. (10/10, when humans aren’t available, highly recommend.) There are benefits to the videos, assuming you’re watching a good one. You can pause and replay, for one thing, without worrying you’re offending your teacher or screwing up the process. I found the Park Tool “how to wrap bar tape” video quite good and beginner-friendly. I especially liked how expert Calvin Jones provides three different ways for handling the wrap around the hoods.
I’m grateful to Silca and to Gravelbike.com for providing two styles of bar tape for review, the Piloti and the Fiore. The Piloti is the thinner of the two. From the back of the box: Ultra Performance 1.85mm … delivers equivalent cushioning to 2.5mm tapes. I applied it to my Surly Crosscheck, which is my all-around, get-around, and commuter bike. Before applying, I had to decide which direction to apply the tape, for “high grip” or “max grip.” Well, max grip, duh. This bike has bar-end shifters, so, no empty tube in which to tuck the head end of the tape. No matter, I had no trouble starting the tape and wrapping it smoothly from shifter to hood. At the hoods, I used the figure 8 option so that the direction of the wrap flipped, as recommended, and the tape was easy to manage from stem to stern. Another bonus: the butterfly-shaped brake clamp cover easily prevents any gap showing beneath. I finished with finishing tape and honestly, for my first time, it looks damn good.
I’ve been out on several rides since applying this tape, both with and without padded riding gloves, and I have to say I’m very impressed. The tape is grippy without being sticky and maintained high grip — I mean max grip — in the rain. It still looks brand new. Though it is a thinner tape, I found I preferred to go sans gloves for JRA (Just Riding Around). I’ve never used bar tape with such a nice grip, and the comfort level was just fine. Next I’ll wrap the gravel bike handle bars with the (Silca Nastro) Fiore tape, which is 2.5mm to the Piloti’s 1.85mm, and I’ll get a century or two and check back in. Wrap n ride! Learn more at http://www.silca.cc.
The Bontrager Adventure Top Tube Bag, or “gas tank,” is great. Is it great for every single person? Purt near! So thank you to GRAVELBIKE.com for facilitating this review, because I was very happy to check out another version of this type of bag. I was especially pleased to see that it sports reinforced openings and screws for securely attaching to your top tube, if your top tube has the capability, because my only complaint about gas tank bags is that they don’t stay in place.
Review, short version: Bontrager’s offering in this market is smallish and plain but highly functional with attention to detail (pockets! high-viz interior! reinforced zipper pull!), scores well on water-resistance, includes screws to bolt to the top tube (a necessity for some riders, including me) and a great deal at just under forty bucks. Interested in more detail? Read on….
Some riders won’t have this issue, but when I come off the seat to stand over the bike, I come forward enough to knock my crotch into any bag that sits atop a top tube, this one included. Wide Velcro straps are enough to keep the bag from falling off the frame, but I found it endlessly annoying to have to keep adjusting the thing back upright & retightening the straps. It’s annoying enough that I would not take either my previous top tube bag (the Revelate) or this one out on a race or any 50+ mile ride where time was a factor using only the Velcro straps. You know the riders most likely to keep running into their gas tanks? Bigger riders like me as well as riders with a shorter reach / shorter top tube to begin with.
I’m a big fan of feed bags. Feed bags, named for the bags of the same name that attach to a horse’s halter, are open bags about the size and shape of a big, closed-bottom coozie that attach around the head tube. Various brands have various features, but all do a great job of keeping snacks handy and accessible. Accessible snacks are critical on the kind of longer gravel races and rides I like, so I’m not looking to replace them, but I was also interested in a top tube bag that could keep smaller, loose items, like a lip balm or money, more secure. The Bontrager bag does this with a zipper protected by a rubber gasket that claims to keep items inside dry.
The Revelate version of the gas tank, with slightly more capacity, has instead of a zipper a fold-over top with an easy-fasten / easy-release catch. Note neither of these bags claim to be 100% waterproof. I wouldn’t cram a phone in either bag, even if it would fit.
I attached the Bontrager Adventure bag to the fat bike using just the two wide Velcro strips and first took it out on some very cold, very snowy rides in Colorado. I experienced the same issue I had with the Revelate bag – knocking it sideways every time I came off the saddle. Maybe in summer clothes I could make a conscious effort not to come so far forward, but eh, why do I want to use gear I have to think about? Like the Revelate, it never appeared at risk of detaching from the top tube, but it was annoying.
I found the zipper easy to use on the fly, even while wearing thin gloves. (I was using Pogies on the handlebars, so, no thick mitts needed. I tried it later wearing my big mittens and was unable to manage the zipper pull while riding.) The bag is roomy enough for keys, lip balm, and money/ID, along with a bandana and a few tissues. I could cram my phone in there – barely – but I didn’t think it was a great place for it. On a cold or wet or messy ride, I want the phone in a waterproof case designed to protect a phone.
I knew that my body hovering over the gas tank while riding wouldn’t give a true test of its ability to keep contents dry during precipitation, so I left it on the bike on the back rack to drive from Colorado Springs to Omaha. I stopped to check the bag after about 200 miles as snowy mountain sleet turned to rain in the plains. In the gas tank, I left a Kleenex and was interested to find that it was still dry when I stopped to check it. I was also interested in the zipper function in general and after road grit. I have a healthy skepticism of zippers!
Winter highway driving in Colorado, Kansas, and Nebraska provided plenty of salt and sand all over my Jeep, bike, and the Adventure bag. I have mild neuropathy in my fingers, so I was particularly pleased to find I could operate the zipper before and after coating it with road grime. Because I tend to torture my gear, I left the bag (sans bike) outside on my bumper overnight in the rain. That did it – the Kleenex was damp in the morning — but just damp, not soaked. Color me impressed.
Overall I prefer the flip-top opening on the Revelate bag to the zipper opening of the Bontrager, but I have to say, the Revelate did not do as well in my “Kleenex test,” and its inability to be attached any more securely means I pulled it off the bike and I’m not using it at all. I’ll be interested to see how the Bontrager bag fares after attaching it with the (included) screws to the top tube of my gravel bike and taking it out on a long ride. (Will update afterwards.)
Final thoughts today: as much as I was disinclined to like this small, plain, zippered bag, it kept surprising me with features & performance. In other words, like I said upfront – it’s pretty great, and if you’re not the type of rider who consistently bangs your crotch into top tube bags, you just might love it.
And just so you don’t think I’ve gone all girly on you after one, ONE gushing post about a pink bra, let’s talk about gravel.
The Great Godfrey (that would be Corey) asked me a few questions about what “gravel family” means to me. I started thinking of answers to the questions he’d listed but then immediately got distracted (squirrel!), lost in the memories a dozen stories that would illustrate my gravel family and I wanted to tell them all! Don’t worry, I won’t. But I will tell a few, starting with my introduction to Gravel Worlds in 2017.
In January 2017, when it was time to sign up for Gravel Worlds, I have no idea what I was thinking. I mean that literally, I can only think that in my January mind, I figured by August I’d be “back to normal.”
Why wouldn’t I? The previous summer I’d been having so much fun riding bikes, getting stronger, meeting new people, and embracing life with a truly zen sense of “fuckit.” As in “Fuckit, I’m not going to worry about fear or what other people think or self-consciousness. Life is good and I’m jumping IN.” But that was before cancer. And that was before I lost Michelle and Mike and the girls. And everything changed after that.
I know I did some riding that summer, once chemo was done in May and I started to feel stronger. But what height of arrogance, to assume I’d be “normal.” Still, Gravel Worlds was something I’d heard spoken in almost mystical terms. My friends had done it and I wanted to be part of it. I’d ridden some gravel, though nothing close to 150 miles. My good friend Scott Redd offered to ride it with me. At the time, I didn’t know what a gift that was — I do now. To give up your potential finish to ride as support for another rider is an enormously generous gift. I mean, it’s huge.
The weather was perfect – a bit cool to start with some fog that quickly burned off. We both had bike computers, but Scott navigated. I focused on pedaling. We both had plenty of food and water, but Scott reminded me to eat. I just turned those pedals. Early on, we caught up to friends when they stopped to change a tire or linger at SAG, but before too long, it felt like everyone who owned a bike in Nebraska had passed us. I still had legs, but I felt so tired. I thought the hills would never end. Sometime after mile 50, I watched our average speed drop into single digits, and my speed up hills drop to a toddler’s age. And then, Lordamighty! There was Malcolm, and the best Coca-Cola I’ve ever tasted. It was hot by then, so we sat in the damp grass in the shade of the general store.
I was quiet as Scott messed with his phone. He asked how I was doing and I was honest: I was hurting. “We have a few options,” he said. We were about 75 miles in; we could push on to the next checkpoint, we could quit and call a friend’s wife for a ride, or, option 3. He hadn’t been messing with his phone, he’d been plotting a route back to the start, it was about 10 miles, could I make it? We’d be DNF’d, but we’d be finishing the ride under our own power. I’m not sure I can explain how much that meant to me at that moment.
(You might notice the picture isn’t of a Coke. Nope, once we made the decision to ride back to the start, I hobbled back into the general store for some Rocky Mountain Spring Water, and let that salty, frosty goodness slide down my dusty throat with a few pulled pork sliders from the barbecue joint next door.)
As we left Malcolm, we turned onto a street that just happened to be the same name as Michelle’s street, and I was overwhelmed with the feeling that she was there with me. I felt calm, that I’d made the right decision, and so incredibly grateful to have a friend like Scott who would make that ride possible for me. And that made all other rides seem possible.
Over and over again I have felt the love and support of ride organizers who welcomed me, fellow riders who shared tips and motivation, and friends who get up early and stay up late to cheer me on.
At 2019’s Gravel Worlds, I rode 17 hours to reach 121 miles before calling Bob about 1 AM at the finish line. He’d driven from Omaha that evening to wait for me, and said he’d just sleep in the truck til I finished, if I wanted. I figured at my current rate, it would be another 4 hours to finish. I’ll pretend it was for Bob’s benefit that I called it, but I was well and truly depleted. After he picked me up, we returned to the finish with a few minutes to spare before the last rider rolled in. It was an honor to yell our heads off at close to 2 in the morning for 2019’s DFL, Scott.
Do other sports have this much joy in lifting each other up? I don’t think so. I don’t see it. Maybe it’s the mud that gets up our nose, the rocks in our hair, and the dirt ground into our knees as we stop to scrape mud out of a cassette with a paint stick. Sure, it’s a race for the top riders, but for most of us, it’s something else. Maybe it’s a conquest, crushing a personal goal, overcoming fear, or maybe it’s just a solitary, crunchy ride away from pavement and cars (but not the occasional seasonal farm equipment). Maybe it’s redemption.
What does “gravel family” mean?
I’m writing this on International Women’s Day, so I’ll close with this story, and this picture, which I love. When I first saw it, I’ll admit, the first thing I noticed was how big I’ve gotten. For all the fucks that breast cancer gives you, the final insult is that for some people, the chemo messes up endocrine systems and we gain weight at a shocking pace. It’s completely demoralizing.
I looked at the picture again and decided, fuck that. My body may not look like it used to look, but it did what I needed it to do. I rode 100 miles of Flint Hills gravel and I just flat-out refused to quit. I walked a lot of hills, I stopped for a lot of breaks, and I hurt so bad, but damnit, I made that last damn hill, pedaled through Emporia State University campus, and turned onto Commercial Street to see the blocks of cheering fans lining the finish line chute. Do you know about the finish line chute? It was my first one, my first finished gravel race, and I’m still a little emotional about it. From a block away, I heard Jim Cummins call out, “Coming in, a 100-miler, from Omaha it’s ANN GENTLE,” and the crowd goes bananas. I had come to Emporia by myself, I had no one with me. And I had to be one of the last 100-milers still out there — I think the 200-mile winners were already in! And yet, and yet… those yells and cowbells and hands hanging out for high-fives were for me. The women of DK were there, screaming my name as I rode toward them down the gauntlet, and finally I started to realize I had done it, and then the sight of Kristi and Treva jumping up and down, then hugging me, handing me a towel from an ice-filled horse trailer and a chocolate Gu Roctane recovery shake.
I’d gotten to know Kristi and Treva and SO many bad-ass men and women during DK’s spring training camp. I met first-place DK finishers, FIVE TIME DK finishers. people who raced the Tour Divide, and riders of the new 350-mile DKXL. I mean, these are truly elite riders, there to share knowledge and ride with us. And never did one person make me feel like I didn’t belong. I was embraced and welcomed and jumped into the gang.
The gravel family is a special group of crazy. Once I started lining up at those starting lines, I learned that I’d see some of the same riders at many events, and then we’d become friends, and would soon have more in common than we have different, just by sharing this joyful crazy thing. We are a family, a family that suffers and celebrates, a family that shares gear tips and beers on bridges and we’re a family that comes together to lift each other up. Yeah, there’s some stiff competition for those top podium spots, and I’m not knocking it. I’m just waiting to get so old I’ll have my own age category and then I will SWEEP ALL THE RIDES!
Just kidding. In all seriousness, it’s no secret to anyone by now that I am going to be at the back of the pack. Do the podium people treat me any differently? They do not. This is gravel, where all are welcome, everyone rides, and if there’s someone holding a chocolate recovery shake or sleeping in their truck at your finish line, you’re a damn lucky soul.
Yesterday, I wrote a 3-part post, “Gimpin, Given, & Gravel,” and it was a super-awkward mashup. So I’ve split them. This is part 2.
There’s a pretty little thing that’s been on my mind a lot lately, on my mind because it’s been on my BODY, and on my mind because someone went to a considerable about of trouble to not only make it, but to make it available, for free, to post-mastectomy women.
It’s a bra, a soft and pretty post-mastectomy bra. Now, those are words that don’t normally go together: soft, pretty, post-mastectomy. Nothing post-mastectomy feels pretty. Don’t go running off if you’re a dude. You can read a post about bras. It’s okay.
It’s clear that the designer, Stella McCartney (you’ve probably heard of her!) and her team spent a lot of time talking to women who’ve been through breast cancer and surgery. Unlike the binding corsets that immediately follow surgery AND unlike the equally unflattering stretchy nylon or T-shirt fabric bras I was later told to wear, this bra is soft, yet structured. It’s not underwire,(which I’m not supposed to wear) and it’s supportive. It has sleeves for breast forms, if needed, but they’re unobtrusive enough that I didn’t notice the first several times I wore it. It’s a vision of pink (NO, NOT PINK! YES, PINK!) 100% organic cotton that opens in the front with a zipper or from the back with hooks — did you catch that? It can open from the front OR the back! I’ve never seen such a thing. AND it’s smooth fabric covered in lace. People, I haven’t been in a comfortable, pretty bra that is flattering in so, so long. Post-surgical garments are… about like they sound. Functional, but not at all attractive.
I’ve certainly never been gifted a bra, but that’s exactly what this one is – a gift bra from McCartney’s Louise Listening project. If you had a mastectomy, you ask for one, and she sends it to you. I was suspicious, a bit, when someone sent me the link. Then I went to stellamccartneycares.org and requested a bra and it came and I put it on and I cried.
If you know someone who has had a single or bi-lateral mastectomy, whether she’s reconstructed with implants or flesh or uses breast forms, please share that link with her. However tough we bc’ers are are, we can all appreciate a gift that communicates so much care.
Sometimes I just need to get things down and a blog post becomes more of a listing, and that’s not what I want. Until I get a bunch of texts asking for an update and I just need to… update.
Sometimes I need to rage and cry and vent and it vomits all over a page and then I’ve vomited on YOU (but I feel better). (Thank you.)
Sometimes I want to share something that moved me, touched my heart and made it sing.
This post is just ONE of those things. (Relax, it’s not the vomiting! The vomiting I did in the last post. Urp. Sorry.) It’s a knee update and the GOOD news is it’s not super exciting: my knee is better. The MRI showed that the July 2018 injuries are as expected. The PCL is as healed as it gets (scar tissue), the MCL is healed. New problems include a torn meniscus and accelerated grinding of the femur in the groove of the tibia (and arthritis). I asked if these issues were made more possible by not having the PCL to keep the knee in more stable movement and he said yes, though it isn’t 100% cause: effect. Age, weight, etc. His recommendation was a cortisone shot and PT for 3 months and then we re-evaluate. The best news: he said take it easy this weekend and after that, I’m cleared to ride! I was up front about current level of training and the upcoming gravel century and I have permission to “pound it!” The decision is made: I will purify myself next weekend in the red dirt of Stillwater, Oklahoma. YEAH.
I’ve done it! I’ve done it!
Guess what I’ve done?
Invented a light that plugs into the sun!
Those lines from a Shel Silverstein poem pop into my head every single time I think the phrase “I’ve done it.” This time, what I’ve done is finally migrate from Blogger to WordPress, and, on the flip side, I’m channeling Stan and Ollie: now I’ve really done it. I’ve injured my knee and subsequently, my back mere weeks before the Mid-South (formerly Land Run) gravel century race in Stillwater, OK.
I made no New Years resolutions for 2020. I did make a commitment: finish races. I committed to myself that I wouldn’t sign up for rides and races I wasn’t prepared to finish. I pledged to start training small and slow in January and that is what I DID. I started slow and steady and then found out why I kept feeling short of breath: bronchitis. Okay, step back, reset. I still had time. The first race of my gravel season: CIRREM, wasn’t until Leap Day, and not 100 miles, just 100K of hilly gravel starting in Cumming, IA.
Yes, that Leap Day — yesterday. I spent Leap Day on the sofa unable to straighten or bear weight on my left leg. And I spent Leap Evening crying in pain and frustration. I needed my sister and my daughter to help me transition from where I’d lain flat on the floor, trying to ease massive muscle spasms in my back, to sitting up and ultimately getting to bed.
I tell ya, the more insight I gain into my future as an old person living with pain, the more I understand pointed comments from my grandparents that once seemed dramatically fatalistic.
What happened, I think, is that the more I favored the bum knee, the more I strained my back. Limping is terrible for posture, see? And I have insufficient abdominal muscles that might have otherwise provided some structural help.
Friday, before my back came into play, I’d thought, “Okay, fine. One knee out of commission. Tomorrow, I start weight training, all arms. Tomorrow, I prop one foot on a chair and spin one-legged on the stationary bike. Tomorrow, I go dry until after Mid-South and focus on as healthy a diet as I can. Well, one outta four ain’t bad. I went dry, but, your Honor, there were pizza rolls. . . .
I’m heartsick and mad and frustrated and, if I’m honest, also scared. I can figure out how a bad knee led to back spasms, but why did my knee suddenly give out again, a year and a half after the crash that injured it? I wasn’t anywhere close to overtraining — I was two months into the year and only up to 10-mile rides with minimal hills. My weight is a big factor, I know. It’s not completely in my control because my thyroid is still WACK, but I can do better – I must.
I’m scared regardless, that the more moles I whack, bigger and uglier moles keep popping up. I’m scared that no matter what, no matter how many steps I take forward, I slide further and further back. I’m trying to keep my head up but scared there’s no point to trying at all. But I guess I’m too dumb to give up.
I’ll see an ortho tomorrow. Before last night, I held out hope that I might be able to brace it and keep training. I dropped out of the Land Run 100 at the 50-mile marker last year; this was to be my redemption. But I have to face reality. It would take a miracle to be able to ride 100 miles of good red Oklahoma dirt in two weeks. But maybe I’m due.
This update is simply to advise that MAN, I MISS MY BIKE wait no – I’m not posting a ride report but I HAVE BEEN IN NEW YORK 3 WEEKS AND HAVEN’T EVEN SAT ON A BIKE – but it’s not, like, a problem or anything, I mean, I can stop WHERE IS THE BIKE GIVE ME THE BIKE anytime and yes, it’s 40 degrees and raining and I don’t really have a good route other than tooling around Brenda and Charlie’s neighborhood YES TOOLING AROUND A NEIGHBORHOOD IS GOOD AND YOU BROUGHT YOUR RAINCOAT SO ????
Oh, aren’t our inner voices lovely?
But seriously. This post is notice that I’m moving the blog to WordPress in the next 24 hours, YES FINALLY. Once it’s complete, I will update here on Blogger with a redirect link.
Upcoming: a bar tape review, including installation, because guess what? I’ve never wrapped my own handlebars. Can’t wait ! Will there be video? Hmm… why not?
If you’ve found this blog fairly recently and are wondering what the hell is up, join the club, because I have no idea. It’s supposed to be about getting out there and making things happen which for me usually means I’m talking about bicycles. Aaaand sometimes I’m not. I had a friend once who reveled in posting lists. Lists for the point of lists, lists to avoid heavy exposition, lists for laziness?I’ve no idea if he’s still blogging and wonder if he saw the term “listicle” coined and thought, “OMG IT ME.” Listicles are articles that are 90% one or more bullet-pointed lists. Great if you’re seeking specific information and you’re short on time, like, for example, “Top tips when changing a bike tube,” but really, who are we paying for “CLICK HERE for 5 Secryts to Happyness” and getting 5 line items ordering us to be grateful? I’m always tempted to do a list. OH right I was going to say hi to the new folks. Hiiii. My comment section doesn’t work. I’m … working on it. While I’m very good with data and spreadsheets and systemic problem identification, I’m remarkably terrible with overall tech. I greatly prefer making my daughter figure out how to get Netflix to show on the television, for example, or reboot the router, or something-something-in the cloud-somethingelse. Me, a list: I ride bikes, though I’ve never come back to pre-cancer mileage. I enjoy public speaking, though memory difficulties and other triggers can make it a challenge. I blame chemo and PTSD. I used to cherish hiking and backpacking, though that’s impossible right now. Yes, I’d say I’m still in some sort of transition. Questions, a list: What would make a person want to read a blog – to subscribe, as it were, to one person’s yawps out into the void? Why do I continue to read the writers I read? I identify with the writer or character, I find humor, I am prodded to ask questions, I’m given answers. Pretty much any of those. I’m in a lot of pain every day. I try and fail not to talk about it, but it consumes every minute and becomes something I must plan around. Even though I know it’s essentially constant, I’ve been known to openly defy it and not wear my binder and wow, sometimes it still surprises me, how dumb it is to tell pain to fuck off for a day. (Pain declines to acquiesce.) What would be great is if other people who are frustrated or in pain or just want to start riding bikes from a new place in their lives — if those folks found some sort of alliance or hope in what I write. I don’t keep going day by day because I’m better than anyone else. I’m SUUUUPer not. I am stubborn though, dogged. I am vain. And sometimes that’s enough to keep me pedaling to that finish line. You can too.
*10/9 Edited, re: ringing the bell – I know I may be wrong. It’s now been suggested multiple times that I should “check my privilege.” I think that challenge can make a person respond defensively, which means, a person should instead ask, listen, consider. I am. Say What Part Huh? No really, say what? What did you say? I wouldn’t have any idea because as I just learned, comments haven’t been posting since sometime in April. And here I just thought you didn’t like me . . . . I’m so sorry I didn’t know. I’ll be moving to another host SOON by which I mean THIS WEEK. In the meantime, feedback of every kind is welcome via one of probably many other ways we’re in contact. Say What Part Uh Oh Twitter is where I spend most of my online social energy. Until very recently, I followed a population of content that delivered a relatively balanced mix of bike stuff, politics, news, writers/writing, and humor. My own original Tweets are not overly frequent, don’t typically gain more than a handful of likes (usually from people I know), vary widely in subject matter, and are not, as a rule, controversial. Example, a recent poll:
A month or so ago, I followed and was followed by a few active Twitter users who have or had cancer. I was welcomed and felt my role was mostly as one who sent the occasional “I’m sorry / that sucks / go kick ass” or answered a hopefully reassuring “yes” to various “did you ever have x issue?” type questions. Several of these folks are in the UK and Canada and it’s been interesting to “chat” about the different ways cancer treatments are handled. I steer clear of interacting with the few angry ranters (one woman is very angry at nurses. Very!) and relentless complainers (I cannot help them). My presence amidst these folks has been simple and non-committal. Some are NED (No Evidence of Disease) but struggling with aftermath / Rx side effects like me, some are in active treatment for a primary cancer, and some are Stage IV in treatment or sometimes not. Among the people in Stage IV are those who self-identify as “terminal” – and some who assertively DON’T. Regardless, Cancer Twitter is not a place for assumptions or clichés. A tossed off “Hang in there! It’ll get better with time!” will not be appreciated. For some of them, it won’t get better. I am — grieving? — to bear witness to what’s gotten the most attention ever in my history of being on Twitter. It is … not flattering. I own what I wrote, but feel like it’s been exaggerated and misinterpreted beyond what’s fair. (I know, I know = Twitter.) But it’s the twisting of what I said that’s gotten a lot of women yelling at me. Trying to explain myself in that venue will only make things worse. So I’m going to try here. The original post from a person I decline to name:
And here, my question to her:
It’s the final part that apparently pissed everyone off. I swear it wasn’t intended to be provocative; it was an honest question: is it too hard?
A possible answer might be “Yes. Yes, it’s too hard. I will never get to ring the bell so it’s hurtful to hear someone else get to.” (which begs more questions but okay)
That simple “yes” was not among the responses. My question assumed to be sarcastic. I didn’t say that those who ring the bell think they’re cured forever, that I would want to “ring a bell for 30 seconds,” have a loud, family-filled celebration in the chemo ward, or not understand that people have more than one round of treatment. I didn’t call her a killjoy, or cruel for her opinion about the bells. All of those things have been attributed to me. I hit a nerve.
The original interaction has been twisted in threads and sub-threads, the angry replies to me are getting liked in the hundreds and retweeted, some with additional angry comments, all of which I’m tagged in, and it’s not slowing down. A woman with “Dr.” in front of her name replied that she “just stumbled across” (bullshit) an article “written just a few days ago” (it wasn’t) that claims bell-ringing is psychologically damaging and cancer patients finishing treatment who ring bells are 85%* more damaged than patients who don’t ring bells. Another woman suggested I probably want bells installed and rung when women have babies so all women who miscarried would have to hear it and suffer. FFS. IT’S A BELL. I wanted to ring it when I finished treatment. She doesn’t want anyone to ever do this. We disagree, but what I want has been vilified. I’ve been called insensitive, thoughtless, and cruel. I’ve tumbled into a rabbit hole of “us vs. them” in Cancer Twitter that I was very sad to learn existed. “Us” currently shows no evidence of disease (NED) while “them” are Stage IV and/or terminal. This is terrible. I thought we were supporting each other, all of us. My bell backstory My oncologist Dr. L moved away halfway through my treatment and while I immediately liked the new one I chose, it meant changing offices. The chemo ward Dr. S uses holds easily 4 times number of patients as my previous place. The nurses in the new ward didn’t know me. Their procedures were different and nobody explained anything. We didn’t trust each other. I saw them interacting with regular patients with warmth and affection but though I was there every week, I didn’t experience that (TBF; I was really sick by then, and my perception was whack.) But consider this: their ward charged for snacks. Like the three other chemo wards I’d seen in town, they had a “final treatment” bell and on several occasions I witnessed patients pull that ribbon for a muted “bong.” I counted week by week until it would be me. It was a rite of passage, it was a goodbye to that place, it was, I thought, a soft chime of hope to the rest of the room. On that last day, I felt tired and sick and alone and sad. I was finishing something I’d planned to endure and attack and conquer with Michelle, but she died before chemo started and my ferocity drained away. I was blessed to have a friend who’d agreed to sit with me.I was grateful and ungrateful for him. He was caring but would be leaving… unwilling to be who and what I wanted him to be. He was gracious and gentle with me. When the last IV was flushed, a nurse whisked the blanket away, waited for us to stand, and bustled us out of there, with a crisp, “Last one? Good luck, bye now,” and my head turned to look at the bell as we fumbled our jackets and bags and water bottles. I practiced in my head a question, “Could I – May I – What about if I – ring the bell?” but as we shuffled through the doorway, I held my tongue. Everything felt final in more ways than one; nothing had turned out like I’d expected. From the hospital we went to Michelle’s grave with a bottle of champagne and three plastic cups. We took flowers. We took a Bud Light for Mike. She wasn’t there, she was gone, she was away, at peace. Her memory was a kiss of spring in the chilly wind. She didn’t begrudge my survival. Twitter is a perfect place for bullies. It allows for perverting and piling on and it’s no place for a complicated backstory. Do I owe the community an apology? Do they owe me? I own that I could be wrong but I don’t think so? I think the most you can hope for in an environment like social media is that someone finds an answer — or a question — that they seek. My answer today is that I am sitting with the discomfort of a mini-furor that my words caused… and hoping that nothing I’ve written in this essay appears to make excuses for it. *Or whatever %, I’m not going back to look it up.