This is a really well-written piece and, as a disabled person, it makes me want to buy a Peloton, haha. I have cerebral palsy, and while I've seen gyms, classes, and other spaces (slowly) start to accept the idea of health at any size, the concept of health at any ability feels like it lags behind. Nobody really seems to know what to do with you when you just...can't do something or need a modification. It would feel awesome to have confidence in myself when working out and not get the stares and "you're using that machine wrong" comments (thanks, Bradley Gym Bro, I'm aware). This might be a solution to the weird competitive gym culture and the feeling that I can't keep up.
I agree with a previous comment that stories like Sherry's make me feel like I'm not alone. I hope I can use experiences like hers to become more confident and celebrate my progress, too -- even if it looks different.
The intimidation of gyms (or anything athletic) is very real and I promise you are not alone. "Nobody knows what to do with us" really resonates...and don't get me started on the staring!
Thank you for sharing this beautiful and important essay. My 18-year-old daughter is disabled (she has a rare form of muscular dystrophy that causes hypermobile joints, muscle weakness, pain, and fatigue), and I am happy to hear that Peloton is making an effort to work with disabled people.
A big problem in the fitness industry for disabled people is that the industry is set up for the able-bodied. It encourages us to push ourselves to the limit. The thinking is that muscles grow when they are stressed, and people improve their cardiovascular fitness and endurance when they force themselves to keep going through the pain.
But for disabled people the exact opposite is often the case: muscles, once damaged, may never recover. Disabled people can injure vulnerable joints if they push themselves to exhaustion. And well-meaning coaches, gym teachers, and trainers who ask a disabled person for “just one more rep/lap/try” risk humiliating the people they want to help. Plus it’s frustrating for the disabled person not to have his or her very real effort acknowledged. It might be all s/he can manage just to show up to class that day and stay standing.
I am hoping that we can let go of our gung-ho, workism culture in fitness and recognize that some of us are doing our very best, even if it might not look like it.
Yes! I'm 34 and have Ehlers-Danlos Syndrome and a lot of the issues your daughter has - hypermobile joints, muscle weakness, pain, and fatigue. If I overdo it, I don't just get sore muscles - I am too exhausted to function. "Just one more rep/lap/try" can literally mean I have to take two sick days from work afterwards.
It's so hard with invisible illnesses because on the outside it looks like we aren't giving it our all when we really are.
thank you for this comment. i'm not disabled but i've struggled with chronic injuries my whole life and people really don't get that pushing yourself is extremely harmful to a lot of people!
This is such a great point! I have chronic migraine that is very hard to control and is triggered by high-intensity exercise. Working to my limit (or beyond) usually results in me being in intense pain for hours after. The pressure to "push through the pain" and keep up with others is enormous, especially in group settings, and I have only recently become comfortable vocalizing my limits and accommodation needs so that exercise stays effective and fun for me.
I briefly took up mountain biking a few years ago, It quickly became evident that my experience of the activity was verrrry different from other riders' even though I was in good physical shape. I simply did not have the apparent obliviousness to physical danger that other riders did, which no amount of "skills training" could overcome no matter what anyone said. And I hated my mindbody for not letting me do what so many other people seemingly could do with ease.
A few years later I was diagnosed with autism, at age 53. Over the ensuing years, I've come to understand that my neurophysiological system is different and far more "sensitive" than that of many other autistic people. No wonder I was always terrified. Proprioception, which is frequently a problem for autistic people, isn't so for me in adulthood, but it was as a child.
No more mountain biking although I still have my hybrid bike. I remain an "oddball": in good physical condition and capable of learning new physical skills, but very fearful of physical danger.
In a few months, I'm moving to a new country with "biking groups for all levels." However, I'm not sure that "my level" will be ever manifested in any group of cyclists. And now I understand why, although I still hate it that I can't simply fit in. But with articles like Sherry's being published more frequently, I know I'm not alone.
Thank you for teaching me the word "proprioception" today! This miscommunication between brain and body really describes what MS has done to my balance and coordination.
Yes, I also have MS, and though my walking/strength are back to being pretty much normal after some long periods of...not, my proprioception/balance/coordination are just permanently not-the-best. I don't get entirely thrown off/dizzy by walking down the street if anything else is also moving now, but, like, if I am walking down an empty hallway and through a totally open doorway, I'd say I have at least a 75% chance of running into the door frame. And I have to be _very_ careful going up and down stairs, if I'm not paying attention or try to rush At All, I will trip/miss the step. On the whole, much better than it has been, but still. I have zero interest in riding a bike that doesn't go anywhere, but this has definitely kept me from ever considering an actual bike to help me get places faster/easier, because there's absolutely no way I could trust my balance/spatial perception on a bicycle even alone and on a perfectly flat surface, much less near others/in TRAFFIC, ha.
Yes, the stairs! I have to be able to SEE my feet when going downstairs to make sure I'm hitting each step the right way. My feet aren't numb, they just...don't communicate well with my brain. Right now we live in a house with the laundry in the basement, and going downstairs carrying a laundry basket is scary! Laundry on the main living level will probably be a deal-breaker for me in any future home. And biking places is a no-go for sure. I actually learned that I had MS after having a pretty dramatic attack on my vision and balance while on a trip to London. "Minding the gap" was downright terrifying for a couple of weeks there.
The having to see your feet thing has also been a bit more annoying than usual these last two years with mask-wearing, which -- as a glasses-wearer, I'm not sure if it does this for non-glasses folks -- impedes my looking-down vision juuuuuuust enough to throw me off.
In the past, I have had _very_ exciting (exciting to see, I'm sure) falls on the stairs in both the London Tube stations _and_ Paris Metro stations when I was stupidly trying to hurry _just_ a little on a few different trips. I'm always having to explain to people that stairs are fine for a couple of flights, it isn't even a stamina issue for me at this point, but more than 2, maybe 3 flights, and I need an elevator or escalator, because too many stairs starts to gamble too much with my feet knowing where to go.
I very much dislike going down stairs with my mask on. While I have no diagnosed condition, I am not comfortable if I can't see where my feet are. I also dislike walking on ice, or steep downhills where it doesn't feel like my feet will stay where I put them.
Yes! The mask + glasses is the worst when navigating with MS. Even when I'm wearing contacts, the mask blocks my downward glances just enough to mess with me. I'm much better at going up stairs than down, which is hard to explain to people. Going down steps = tiny moments of terror with every step feeling like an uncontrolled fall. Forget it if I'm also carrying something bulky. I once navigated the city of Edinburgh, which is almost entirely composed of old stone stairs, with double vision. I spent a lot of time grabbing my husband's arm VERY hard. Major metro areas are also very hazardous with all their stairs, trains, weird bathroom configurations, and uneven curbs.
Oh my goodness, Amy you've just sparked so many memories for me of my own forays into mountain biking! I always found the laid-back, casual, outdoorsy culture so appealing, but then I totally couldn't keep up for the same risk aversion you mention.
Three hilarious stories: 1) the time I entered a race and right at the start, the course took us up a massive climb, and I got PASSED by the "tikes" division that started after my age group; 2) the race I entered where I got the prize for coming in last; and 3) the other race where riders had to go down a treacherous hill (or it might have even been a long staircase?) and I got off my bike and ran down, and the course-side volunteer scoffed, "oh COME on". :)
My first and only MTB race was in the early 90s. I was in great running and road riding shape. I approached the finish line with another rider close on my rear tire. There was hooting and hollering and cheers as we raced to the line and I crossed before him! He stopped and I kept going, happy-as only I knew- that I had avoided being lapped. I finished a lap later. Dead last.
I have MS, and I relate so much to this. Pre-MS I was getting into running, and even did a 10k. Last year my Covid purchase was a treadmill, which I use while holding onto at least one side rail for balance. I'm also now at the point of realizing that maybe my previous strategy of "completely ignoring MS and working even harder" isn't sustainable. My reaction upon being diagnosed in 2017 was to book several international trips and sign up for a PhD program. I took the trips, and am finishing the dissertation. But I've just about decided not to apply for a role at work that would be a promotion, because I can't handle the stress of supervising others. It triggers all my physical and emotional reactions, resulting in nerve pain, exhaustion, and the dreaded cog fog. The cognitive effects are particularly scary, and I know they are worse when I'm stressed and tired. So I'm trying to re-think myself into a life that isn't based on blind ambition and earning gold stars. It's...challenging, when you've built a whole former-gifted-kid persona around visible achievement. Thank you for this essay, and for the reminder that some of the biggest wins happen out of sight of the world.
Thank you for sharing this. As a disabled person, I so rarely see stories of others with "invisible disabilities" outside of my patient groups and disabled circles. Refreshing to be "seen" in the wild.
This was such a great read. Thank you for sharing your Peloton story, Sherry!! I'm reminded of Christine D'Ercole's exhortation (on every. damn. ride.) that what matters is not WHERE you are on the leaderboard, but the fact that you're on it.
It's a good reminider to me to celebrate all my fellow riders, from the anonymous jumbles of seemingly meaningless letters to the full-name usernames, hashtagged and not, and hope one day one of my random high fives lands on your screen, Sherry.
Thank you so much, Sherry, for this piece! I relate so much to it and feel like I could have written so much of it!
I'm a 34 year old female with Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS) and have really struggled with my place in the wellness/fitness industry. "For all abilities" often still means higher than my ability. I've found that there's a gap between physical therapy and the wellness industry. I'll graduate from PT but still not be anywhere strong enough for true beginners classes. If I overdo it, I don't just get sore muscles - I'll be too exhausted to function for two days. And when I say too exhausted, I mean that my body will involuntarily sleep for the overwhelming majority of those two days to recover.
I recently was led to a yoga teacher who has been so life-changing for me. She not only understands my EDS hypermobility issues but will jump in and assist without me asking because she can tell when I'm just being stretchy versus engaging my muscles. Because of covid the class size is small and intimate so she has the ability to jump in and assist everyone; therefore, her assisting me isn't a big deal. She introduces multiple modifications for a lot of poses so it really is for a wide range of levels. Since the class is small and so friendly I felt okay opening up to everyone about my issues, so, for instance, now they don't bat an eye when I accidentally switch poses too quickly and POTS kicks in and I get dizzy and fall down. I also do some poses with a walking stick or a wall for balance.
When I was first diagnosed I didn't want anything to hold me back, but as a result I kept burning out. It was soooooo hard to learn to take it slow because all of the messaging about fitness is "no pain, no gain!" Because I've been private about my journey it doesn't necessarily look slow to the casual observer, but I didn't start running 5Ks overnight - it literally took YEARS of PT before I could even get to a point of doing a couch to 5K type app/program, and even that program I've had to take slow. It's designed to take 12 weeks at three days a week; I've been doing 1-2 days a week, so if I finish in 24 weeks that'll be fast for me.
I have a recumbent bike in my basement that I've been meaning to dust off (I purposely own a recumbent one because my shoulders dislocate easily) and you've inspired me to do so!
Thank you, Sherry! Yes, it really has been hard and it takes so much self-initiative, which is even harder. The ultra beginner path should already be out there but isn't.
It actually makes me think back to my childhood - I was always the slowest kid in the class and on my sports team and that really embarrassed me, but no one had any ideas for how to improve that. We were tested in school on things like push-ups and running a mile but there was never any training in gym class or even dittos handed out to take home to self-train. I just sadly accepted every year that I would be able to do zero push-ups and be the last kid to finish the mile at around 15 minutes, completely out of breath. I would have liked sports and gym class a lot better if someone had guided me on ways to improve.
I work in urban planning and used to work specifically in transportation planning. Everyone wants to increase the number of people biking around towns and cities but no one wants to acknowledge the personal physical barriers to that (especially in the hilly area where I live). Every time I brought that up to the local bike advocacy groups I would get ignored. Add all of the bike lanes you want but if you don't give people a realistic guide to improving their physical endurance then they won't ride them. One of the first cycle tracks installed in the city where I used to live was on a street with a GIANT hill. From a physical equity standpoint it's pretty terrible. City and town planners need to come up with walking and bike routes for people at multiple levels of fitness.
I realize I'm rambling - this subject just really fires me up - so one more anecdote. I decided to try swimming laps for the first time in forever yesterday afternoon. With a few stops and starts, I made it one lap and I was/am pretty proud of myself. Out of curiosity, I decided to look up some swimming beginner's apps and programs online. The least experienced one I could find has the user swim TEN laps on the first day. Sigh.
Totally fires me up too! Your bike lanes story is an excellent reason why we need more diversity in decision making...a disability advocate likely would have also agreed with your suggestions.
I too feel like gym class in school is where I first confirmed that I'm not good at sports. But like you said, what if I was given the opportunity to practice beforehand? Or what if those same drills were not done in front of the entire class?!
Way to go on your swimming! What matters is that you felt good and your body was able to get it done.
I'm realizing I've spent too much life comparing myself and my physical abilities to what my body "should" be doing.
This was such an interesting perspective. Thank you for sharing.
The quote that stuck out for me is this one:
« And really, what is my responsibility for explaining to everyone why I move differently? »
I have two disorders that impact my ability to move smoothly: CMT1A and Ehlers Danlos.
My view: It is not our responsibility to explain our movement to others. It is society’s responsibility to create acceptance. It is my role to do what I need to, to be able to do what I want or what I need. It is society’s role to accept that.
What makes me sad is that we as a society simply aren’t there. We do not accept otherness. Instead we see difference. We do not allow others to adapt. We challenge why others don’t simply go along with the prescribed method, form of approach. And often genuine questions about why we do things differently cause our tribe to just leave, feeling judged. It’s not our issue - it’s deep rooted ableism.
I could go on and on. I’ve done and achieved a lot - beaten my limitations in ways that have not harmed me, learned a sport, raced for my country, had such cool experiences with health and fitness. I was able to do so by adapting and finding the spaces and people that enabled me to adapt. But. THIS HAS NOT BE EASY. And society does not make it so.
My one suggestion for Peleton and all the chains of gyms would be to have adaptive coaches and sessions. Healthy At Every Ability would be so HEALTHY. Not just for those of us with conditions - but for newbies, for those coming back from injury, or those who want a bit more laid back approach to movement in their life. Adaptive and ACCEPTING spaces.
Well put! It should be society's responsibility to understand we are all different. But it doesn't always feel that way...even well meaning questions remind you that you are still viewed as different
Exactly. And when that happens the so-called normal people don’t even réalise how the off-the-cuff remarks or questions can just be so discouraging. We have so far to go. So. Far.
Thank you again for sharing your story. I wish I could buy a Peleton where I live! (not available in France!)
As someone with invisible disabilities, thank you so much Sherry for this CELEBRATION. I have been trying to find ways to befriend and embody my body again, and appreciate your nuanced reflections and sharing the affirmations from Alex. I've written them down the next time I'm too hard on myself for not pushing beyond what my body used to be able to handle.
Just catching up on missed reading from the week. “We get to do this” sometimes can seem trite, but is something I believe to my core. I’m glad to be a part of your team. #lawboy here. Don’t be a stranger.
Thank you so much for sharing your experience. I too have a disability (Ehlers-Danlos) that makes exercise difficult, exhausting and painful. As a former athlete I miss the competition and feeling of achievement that comes with exercise. I appreciate you sharing the different modes of exercise you tried before finding one that works for you both physically and mentally. It gives me hope that I can find a modality that will work well for me in the future!
I have EDS, too! I am with you - I hate that I can't be as athletic as I once was. In my experience it's so hard to find fitness programs between the abilities needed for physical therapy and beginners classes, so I've had to create my own.
I mentioned in another comment about finding a yoga teacher who understands hypermobility. That has been so instrumental for me! (If you happen to live in the Baltimore area, you should join my class!) I've also had to create my own running and strength training programs - I basically have found beginner's programs online and in apps and then scaled them down further to be even more beginner for me. It's funny, there are so many articles about how strength training with machines isn't as good, but they have helped me because I am too weak to do complex bodyweight movements right now. Isolating the muscle groups has been a great starting point for me. I also want to add back in my recumbent bike, which I'll do starting with 5 minute rides.
The hardest part for me is the patience required. I want to do more faster but if I do then I'll be so exhausted that I literally won't be able to get out of bed for two days. It's also hard to accept that my abilities will be better or worse some days without any clear rhyme or reason. It's not a clear upward progression. I've also had to let go how I look to others. I wear six braces while I run so I don't subluxate. Because of having POTS, getting dizzy and falling down at least once during yoga is a given. Another hard thing about EDS is how much of a spectrum it is, even within the same family - I am on the milder end and am able to manage a lot of my pain through diet; meanwhile, my cousin occasionally has to use a wheelchair. Everything has to be tailored.
I hope you are able to find something that works for you!!!!!
me three re: EDS! finally getting to read this piece and hoping it’s not too late to chime in – your comments have been inspiring to read, @wren! I had spinal fusion surgery just before the pandemic, and am still (perennially) trying to find a favorite workout; until I got really sick in 2015 or so, I was a soulcycle die-hard and the irony of so many people discovering the joy of the bike over the last year, which I’ve missed terribly, hasn’t been lost on me. @sherry, this piece makes me want to finally try a peloton and get some of that happiness back, albeit in a modified form.
This was so wonderful to read. I'm so glad to see that while of course there are areas where they can still improve that Peloton is creating a space for Health at Any Ability.
Also as a side note thanks to AHP's other piece of this series I'm about to finish the "discover your power zones" program this week! I can't believe how much I ended up enjoying it and I can't wait to take my zones out of the program and use them in the regular classes. Being freed from a specific cadence and resistance has been legit life changing for me.
As the daughter of a woman who lived with MS from about age 28 to 90, and who raised 6 children and always did about 200%, of what people thought was possible for her; times were tough. This woman was Margaret Petersen, aunt to Dave Petersen.
She also pursued her passions of art, gardening, and civic and church activities. No Peleton for her, but as with this author, Mom did everything she could, took naps, and did it all over again, most of it well-before ADA was passed. Thank you for presenting us with this wonderful essay. It's about attitude, as much as it is about fitness, and aren't those two usually connected?
This is a really well-written piece and, as a disabled person, it makes me want to buy a Peloton, haha. I have cerebral palsy, and while I've seen gyms, classes, and other spaces (slowly) start to accept the idea of health at any size, the concept of health at any ability feels like it lags behind. Nobody really seems to know what to do with you when you just...can't do something or need a modification. It would feel awesome to have confidence in myself when working out and not get the stares and "you're using that machine wrong" comments (thanks, Bradley Gym Bro, I'm aware). This might be a solution to the weird competitive gym culture and the feeling that I can't keep up.
I agree with a previous comment that stories like Sherry's make me feel like I'm not alone. I hope I can use experiences like hers to become more confident and celebrate my progress, too -- even if it looks different.
The intimidation of gyms (or anything athletic) is very real and I promise you are not alone. "Nobody knows what to do with us" really resonates...and don't get me started on the staring!
Thank you for sharing this beautiful and important essay. My 18-year-old daughter is disabled (she has a rare form of muscular dystrophy that causes hypermobile joints, muscle weakness, pain, and fatigue), and I am happy to hear that Peloton is making an effort to work with disabled people.
A big problem in the fitness industry for disabled people is that the industry is set up for the able-bodied. It encourages us to push ourselves to the limit. The thinking is that muscles grow when they are stressed, and people improve their cardiovascular fitness and endurance when they force themselves to keep going through the pain.
But for disabled people the exact opposite is often the case: muscles, once damaged, may never recover. Disabled people can injure vulnerable joints if they push themselves to exhaustion. And well-meaning coaches, gym teachers, and trainers who ask a disabled person for “just one more rep/lap/try” risk humiliating the people they want to help. Plus it’s frustrating for the disabled person not to have his or her very real effort acknowledged. It might be all s/he can manage just to show up to class that day and stay standing.
I am hoping that we can let go of our gung-ho, workism culture in fitness and recognize that some of us are doing our very best, even if it might not look like it.
Yes! I'm 34 and have Ehlers-Danlos Syndrome and a lot of the issues your daughter has - hypermobile joints, muscle weakness, pain, and fatigue. If I overdo it, I don't just get sore muscles - I am too exhausted to function. "Just one more rep/lap/try" can literally mean I have to take two sick days from work afterwards.
It's so hard with invisible illnesses because on the outside it looks like we aren't giving it our all when we really are.
thank you for this comment. i'm not disabled but i've struggled with chronic injuries my whole life and people really don't get that pushing yourself is extremely harmful to a lot of people!
This is such a great point! I have chronic migraine that is very hard to control and is triggered by high-intensity exercise. Working to my limit (or beyond) usually results in me being in intense pain for hours after. The pressure to "push through the pain" and keep up with others is enormous, especially in group settings, and I have only recently become comfortable vocalizing my limits and accommodation needs so that exercise stays effective and fun for me.
So well said! My thoughts exactly
I briefly took up mountain biking a few years ago, It quickly became evident that my experience of the activity was verrrry different from other riders' even though I was in good physical shape. I simply did not have the apparent obliviousness to physical danger that other riders did, which no amount of "skills training" could overcome no matter what anyone said. And I hated my mindbody for not letting me do what so many other people seemingly could do with ease.
A few years later I was diagnosed with autism, at age 53. Over the ensuing years, I've come to understand that my neurophysiological system is different and far more "sensitive" than that of many other autistic people. No wonder I was always terrified. Proprioception, which is frequently a problem for autistic people, isn't so for me in adulthood, but it was as a child.
No more mountain biking although I still have my hybrid bike. I remain an "oddball": in good physical condition and capable of learning new physical skills, but very fearful of physical danger.
In a few months, I'm moving to a new country with "biking groups for all levels." However, I'm not sure that "my level" will be ever manifested in any group of cyclists. And now I understand why, although I still hate it that I can't simply fit in. But with articles like Sherry's being published more frequently, I know I'm not alone.
Thank you for teaching me the word "proprioception" today! This miscommunication between brain and body really describes what MS has done to my balance and coordination.
Yes, I also have MS, and though my walking/strength are back to being pretty much normal after some long periods of...not, my proprioception/balance/coordination are just permanently not-the-best. I don't get entirely thrown off/dizzy by walking down the street if anything else is also moving now, but, like, if I am walking down an empty hallway and through a totally open doorway, I'd say I have at least a 75% chance of running into the door frame. And I have to be _very_ careful going up and down stairs, if I'm not paying attention or try to rush At All, I will trip/miss the step. On the whole, much better than it has been, but still. I have zero interest in riding a bike that doesn't go anywhere, but this has definitely kept me from ever considering an actual bike to help me get places faster/easier, because there's absolutely no way I could trust my balance/spatial perception on a bicycle even alone and on a perfectly flat surface, much less near others/in TRAFFIC, ha.
Yes, the stairs! I have to be able to SEE my feet when going downstairs to make sure I'm hitting each step the right way. My feet aren't numb, they just...don't communicate well with my brain. Right now we live in a house with the laundry in the basement, and going downstairs carrying a laundry basket is scary! Laundry on the main living level will probably be a deal-breaker for me in any future home. And biking places is a no-go for sure. I actually learned that I had MS after having a pretty dramatic attack on my vision and balance while on a trip to London. "Minding the gap" was downright terrifying for a couple of weeks there.
The having to see your feet thing has also been a bit more annoying than usual these last two years with mask-wearing, which -- as a glasses-wearer, I'm not sure if it does this for non-glasses folks -- impedes my looking-down vision juuuuuuust enough to throw me off.
In the past, I have had _very_ exciting (exciting to see, I'm sure) falls on the stairs in both the London Tube stations _and_ Paris Metro stations when I was stupidly trying to hurry _just_ a little on a few different trips. I'm always having to explain to people that stairs are fine for a couple of flights, it isn't even a stamina issue for me at this point, but more than 2, maybe 3 flights, and I need an elevator or escalator, because too many stairs starts to gamble too much with my feet knowing where to go.
Wow! I always noticed I struggle with a mask, but couldn't quite figure out why. Thanks for explaining it so well
I very much dislike going down stairs with my mask on. While I have no diagnosed condition, I am not comfortable if I can't see where my feet are. I also dislike walking on ice, or steep downhills where it doesn't feel like my feet will stay where I put them.
Yes! The mask + glasses is the worst when navigating with MS. Even when I'm wearing contacts, the mask blocks my downward glances just enough to mess with me. I'm much better at going up stairs than down, which is hard to explain to people. Going down steps = tiny moments of terror with every step feeling like an uncontrolled fall. Forget it if I'm also carrying something bulky. I once navigated the city of Edinburgh, which is almost entirely composed of old stone stairs, with double vision. I spent a lot of time grabbing my husband's arm VERY hard. Major metro areas are also very hazardous with all their stairs, trains, weird bathroom configurations, and uneven curbs.
Are we the same person, though? : )
Oh my goodness, Amy you've just sparked so many memories for me of my own forays into mountain biking! I always found the laid-back, casual, outdoorsy culture so appealing, but then I totally couldn't keep up for the same risk aversion you mention.
Three hilarious stories: 1) the time I entered a race and right at the start, the course took us up a massive climb, and I got PASSED by the "tikes" division that started after my age group; 2) the race I entered where I got the prize for coming in last; and 3) the other race where riders had to go down a treacherous hill (or it might have even been a long staircase?) and I got off my bike and ran down, and the course-side volunteer scoffed, "oh COME on". :)
My first and only MTB race was in the early 90s. I was in great running and road riding shape. I approached the finish line with another rider close on my rear tire. There was hooting and hollering and cheers as we raced to the line and I crossed before him! He stopped and I kept going, happy-as only I knew- that I had avoided being lapped. I finished a lap later. Dead last.
that's hilarious! and totally my style of mountain bike racing :)
I have MS, and I relate so much to this. Pre-MS I was getting into running, and even did a 10k. Last year my Covid purchase was a treadmill, which I use while holding onto at least one side rail for balance. I'm also now at the point of realizing that maybe my previous strategy of "completely ignoring MS and working even harder" isn't sustainable. My reaction upon being diagnosed in 2017 was to book several international trips and sign up for a PhD program. I took the trips, and am finishing the dissertation. But I've just about decided not to apply for a role at work that would be a promotion, because I can't handle the stress of supervising others. It triggers all my physical and emotional reactions, resulting in nerve pain, exhaustion, and the dreaded cog fog. The cognitive effects are particularly scary, and I know they are worse when I'm stressed and tired. So I'm trying to re-think myself into a life that isn't based on blind ambition and earning gold stars. It's...challenging, when you've built a whole former-gifted-kid persona around visible achievement. Thank you for this essay, and for the reminder that some of the biggest wins happen out of sight of the world.
"some of the biggest wins happen out of sight of the world." i love that soo much!
Agreed! Beautifully put
Thank you for sharing this. As a disabled person, I so rarely see stories of others with "invisible disabilities" outside of my patient groups and disabled circles. Refreshing to be "seen" in the wild.
I feel the same way! Even though I logically know invisible disabilities are all around us, it feels like I don't "see" or hear about it very much
This was such a great read. Thank you for sharing your Peloton story, Sherry!! I'm reminded of Christine D'Ercole's exhortation (on every. damn. ride.) that what matters is not WHERE you are on the leaderboard, but the fact that you're on it.
It's a good reminider to me to celebrate all my fellow riders, from the anonymous jumbles of seemingly meaningless letters to the full-name usernames, hashtagged and not, and hope one day one of my random high fives lands on your screen, Sherry.
Thank you for reading!
Thank you so much, Sherry, for this piece! I relate so much to it and feel like I could have written so much of it!
I'm a 34 year old female with Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS) and have really struggled with my place in the wellness/fitness industry. "For all abilities" often still means higher than my ability. I've found that there's a gap between physical therapy and the wellness industry. I'll graduate from PT but still not be anywhere strong enough for true beginners classes. If I overdo it, I don't just get sore muscles - I'll be too exhausted to function for two days. And when I say too exhausted, I mean that my body will involuntarily sleep for the overwhelming majority of those two days to recover.
I recently was led to a yoga teacher who has been so life-changing for me. She not only understands my EDS hypermobility issues but will jump in and assist without me asking because she can tell when I'm just being stretchy versus engaging my muscles. Because of covid the class size is small and intimate so she has the ability to jump in and assist everyone; therefore, her assisting me isn't a big deal. She introduces multiple modifications for a lot of poses so it really is for a wide range of levels. Since the class is small and so friendly I felt okay opening up to everyone about my issues, so, for instance, now they don't bat an eye when I accidentally switch poses too quickly and POTS kicks in and I get dizzy and fall down. I also do some poses with a walking stick or a wall for balance.
When I was first diagnosed I didn't want anything to hold me back, but as a result I kept burning out. It was soooooo hard to learn to take it slow because all of the messaging about fitness is "no pain, no gain!" Because I've been private about my journey it doesn't necessarily look slow to the casual observer, but I didn't start running 5Ks overnight - it literally took YEARS of PT before I could even get to a point of doing a couch to 5K type app/program, and even that program I've had to take slow. It's designed to take 12 weeks at three days a week; I've been doing 1-2 days a week, so if I finish in 24 weeks that'll be fast for me.
I have a recumbent bike in my basement that I've been meaning to dust off (I purposely own a recumbent one because my shoulders dislocate easily) and you've inspired me to do so!
Good for you for finding something that works for you! I'd say that's the hardest part.
Thank you, Sherry! Yes, it really has been hard and it takes so much self-initiative, which is even harder. The ultra beginner path should already be out there but isn't.
It actually makes me think back to my childhood - I was always the slowest kid in the class and on my sports team and that really embarrassed me, but no one had any ideas for how to improve that. We were tested in school on things like push-ups and running a mile but there was never any training in gym class or even dittos handed out to take home to self-train. I just sadly accepted every year that I would be able to do zero push-ups and be the last kid to finish the mile at around 15 minutes, completely out of breath. I would have liked sports and gym class a lot better if someone had guided me on ways to improve.
I work in urban planning and used to work specifically in transportation planning. Everyone wants to increase the number of people biking around towns and cities but no one wants to acknowledge the personal physical barriers to that (especially in the hilly area where I live). Every time I brought that up to the local bike advocacy groups I would get ignored. Add all of the bike lanes you want but if you don't give people a realistic guide to improving their physical endurance then they won't ride them. One of the first cycle tracks installed in the city where I used to live was on a street with a GIANT hill. From a physical equity standpoint it's pretty terrible. City and town planners need to come up with walking and bike routes for people at multiple levels of fitness.
I realize I'm rambling - this subject just really fires me up - so one more anecdote. I decided to try swimming laps for the first time in forever yesterday afternoon. With a few stops and starts, I made it one lap and I was/am pretty proud of myself. Out of curiosity, I decided to look up some swimming beginner's apps and programs online. The least experienced one I could find has the user swim TEN laps on the first day. Sigh.
Totally fires me up too! Your bike lanes story is an excellent reason why we need more diversity in decision making...a disability advocate likely would have also agreed with your suggestions.
I too feel like gym class in school is where I first confirmed that I'm not good at sports. But like you said, what if I was given the opportunity to practice beforehand? Or what if those same drills were not done in front of the entire class?!
Way to go on your swimming! What matters is that you felt good and your body was able to get it done.
I'm realizing I've spent too much life comparing myself and my physical abilities to what my body "should" be doing.
This was such an interesting perspective. Thank you for sharing.
The quote that stuck out for me is this one:
« And really, what is my responsibility for explaining to everyone why I move differently? »
I have two disorders that impact my ability to move smoothly: CMT1A and Ehlers Danlos.
My view: It is not our responsibility to explain our movement to others. It is society’s responsibility to create acceptance. It is my role to do what I need to, to be able to do what I want or what I need. It is society’s role to accept that.
What makes me sad is that we as a society simply aren’t there. We do not accept otherness. Instead we see difference. We do not allow others to adapt. We challenge why others don’t simply go along with the prescribed method, form of approach. And often genuine questions about why we do things differently cause our tribe to just leave, feeling judged. It’s not our issue - it’s deep rooted ableism.
I could go on and on. I’ve done and achieved a lot - beaten my limitations in ways that have not harmed me, learned a sport, raced for my country, had such cool experiences with health and fitness. I was able to do so by adapting and finding the spaces and people that enabled me to adapt. But. THIS HAS NOT BE EASY. And society does not make it so.
My one suggestion for Peleton and all the chains of gyms would be to have adaptive coaches and sessions. Healthy At Every Ability would be so HEALTHY. Not just for those of us with conditions - but for newbies, for those coming back from injury, or those who want a bit more laid back approach to movement in their life. Adaptive and ACCEPTING spaces.
Well put! It should be society's responsibility to understand we are all different. But it doesn't always feel that way...even well meaning questions remind you that you are still viewed as different
Exactly. And when that happens the so-called normal people don’t even réalise how the off-the-cuff remarks or questions can just be so discouraging. We have so far to go. So. Far.
Thank you again for sharing your story. I wish I could buy a Peleton where I live! (not available in France!)
So far! Hopefully the more we speak out, the closer we get to progress. Thanks for reading!
As someone with invisible disabilities, thank you so much Sherry for this CELEBRATION. I have been trying to find ways to befriend and embody my body again, and appreciate your nuanced reflections and sharing the affirmations from Alex. I've written them down the next time I'm too hard on myself for not pushing beyond what my body used to be able to handle.
As a Peloton member, I really appreciated reading about your experience. I love the idea of HAEA. Thank you for sharing.
Thank you for reading!
Thank you so much, being disabled can be such a solitary struggle. I wish there were more opportunities for us to learn from each other.
Just catching up on missed reading from the week. “We get to do this” sometimes can seem trite, but is something I believe to my core. I’m glad to be a part of your team. #lawboy here. Don’t be a stranger.
Thank you so much for sharing your experience. I too have a disability (Ehlers-Danlos) that makes exercise difficult, exhausting and painful. As a former athlete I miss the competition and feeling of achievement that comes with exercise. I appreciate you sharing the different modes of exercise you tried before finding one that works for you both physically and mentally. It gives me hope that I can find a modality that will work well for me in the future!
I have EDS, too! I am with you - I hate that I can't be as athletic as I once was. In my experience it's so hard to find fitness programs between the abilities needed for physical therapy and beginners classes, so I've had to create my own.
I mentioned in another comment about finding a yoga teacher who understands hypermobility. That has been so instrumental for me! (If you happen to live in the Baltimore area, you should join my class!) I've also had to create my own running and strength training programs - I basically have found beginner's programs online and in apps and then scaled them down further to be even more beginner for me. It's funny, there are so many articles about how strength training with machines isn't as good, but they have helped me because I am too weak to do complex bodyweight movements right now. Isolating the muscle groups has been a great starting point for me. I also want to add back in my recumbent bike, which I'll do starting with 5 minute rides.
The hardest part for me is the patience required. I want to do more faster but if I do then I'll be so exhausted that I literally won't be able to get out of bed for two days. It's also hard to accept that my abilities will be better or worse some days without any clear rhyme or reason. It's not a clear upward progression. I've also had to let go how I look to others. I wear six braces while I run so I don't subluxate. Because of having POTS, getting dizzy and falling down at least once during yoga is a given. Another hard thing about EDS is how much of a spectrum it is, even within the same family - I am on the milder end and am able to manage a lot of my pain through diet; meanwhile, my cousin occasionally has to use a wheelchair. Everything has to be tailored.
I hope you are able to find something that works for you!!!!!
me three re: EDS! finally getting to read this piece and hoping it’s not too late to chime in – your comments have been inspiring to read, @wren! I had spinal fusion surgery just before the pandemic, and am still (perennially) trying to find a favorite workout; until I got really sick in 2015 or so, I was a soulcycle die-hard and the irony of so many people discovering the joy of the bike over the last year, which I’ve missed terribly, hasn’t been lost on me. @sherry, this piece makes me want to finally try a peloton and get some of that happiness back, albeit in a modified form.
This was so wonderful to read. I'm so glad to see that while of course there are areas where they can still improve that Peloton is creating a space for Health at Any Ability.
Also as a side note thanks to AHP's other piece of this series I'm about to finish the "discover your power zones" program this week! I can't believe how much I ended up enjoying it and I can't wait to take my zones out of the program and use them in the regular classes. Being freed from a specific cadence and resistance has been legit life changing for me.
As the daughter of a woman who lived with MS from about age 28 to 90, and who raised 6 children and always did about 200%, of what people thought was possible for her; times were tough. This woman was Margaret Petersen, aunt to Dave Petersen.
She also pursued her passions of art, gardening, and civic and church activities. No Peleton for her, but as with this author, Mom did everything she could, took naps, and did it all over again, most of it well-before ADA was passed. Thank you for presenting us with this wonderful essay. It's about attitude, as much as it is about fitness, and aren't those two usually connected?
I love this essay. It's so hard sometimes to find a fitness practice that works.