S25: Victoria Arlen: One More Step to the Trophy

[OnceSane]

Quote

At the age of 11, lifelong swimmer Victoria Arlen fell ill with a rare viral disease that left her without use of her legs for nearly 10 years. Her health improved tremendously and, not only did she participate in four events at the London Paralympic Games, but she also took home one Gold and three Silver medals while also setting a world record in in the 100-meter free. Now Victoria is taking on yet another challenge in the ballroom with partner Valentin Chmerkovskiy.

[kitcloudkicker]

More on Victoria's story: 
http://people.com/tv/dancing-with-stars-victoria-arlen-miraculous-recovery/

This is chilling: 
 

Quote

“Then everything went dark,” she continued. “Two years later, I woke up inside a body that could not move. I was locked in. I could hear the conversations going on around me, but I had no way of alerting anyone that I was aware they were there.”

It took three years for doctors to diagnose Arlen with two equally rare conditions: Transverse Myelitis and Acute Disseminated Encephalomyelitis, autoimmune disorders that caused swelling in her brain and spinal cord.

“I’ve since learned that, had my doctors diagnosed me correctly in 2006, a steroid injection could have prevented all of this,” she said. “But at the time of my diagnosis, they offered my family little hope. They told them I would be a vegetable for the rest of my life. I heard those conversations.”

[irisheyes]

Over/under on how many times Carrie Ann a) cries and b) references her "inspiring" story?

I'm not minimizing Victoria's story, but I feel like the dancers who have disabilities or past disabilities get a pass from the judges because they're so "inspiring."

[Katydid]

I don't have any ill feelings towards Victoria for her personal story, and agree she had quite a remarkable recovery.  And I'm one that always wishes for more representation of the disability community in entertainment (though I guess she's not really part of the community at this point).  However,  I don't look forward to the way her journey will surely be portrayed on the show (yes, especially Carrie Ann's boo-hooing every week).  From reading her story, it seems that no matter how much of a recovery she made, she wasn't happy until she was out of the wheelchair.  As a wheelchair user myself, I absorb those negative stereotypes and attitudes people have towards my life every day.  The sweeping assumptions about my abilities and quality of life based entirely on the fact that I move around in a way that is different from most people, when in fact I am very independent, capable, and happy.  We desperately need more representation from people who are living and thriving WITH disabilities. 

So, my initial gut feeling after hearing that DWTS was having another contestant who "overcame" paralysis (among many other complications of course, but "they!said!she!would!never!walk!again!!! will undoubtedly be the focus) was disappointment that they were continuing the damaging narrative that disability is something that has to be "fixed" in order to have a decent life.   I've also heard from people I know who have acquired paralysis (mine is congenital) that stories like this are difficult for them because it gives some non-disabled people the idea that "if you just try hard enough you can get rid of paralysis too", which is not true.  But then, I do realize they've also had contestants with current disabilities/differences (Amy, Nyle, Marlee, etc.), so I'm trying to be more open minded about those with stories like Victoria's.  It's frustrating though to know that there will not be another side to the paralysis storyline presented.  Of course I don't expect them to have a current wheelchair user as a contestant because they couldn't be judged by the same criteria, but I would love to see wheelchair dancers as a featured dance at some point. Wheelchair ballroom dancing is actually a thing and is quite impressive to watch, plus there are other wheelchair dance troupes out there that do other types of dance.  Of course Carrie Ann would still cry.  haha 

[madpsych78]

What about wheelchair freestyle?

[Uke]

On 9/6/2017 at 10:01 PM, irisheyes said:

Over/under on how many times Carrie Ann a) cries and b) references her "inspiring" story?

I'm not minimizing Victoria's story, but I feel like the dancers who have disabilities or past disabilities get a pass from the judges because they're so "inspiring."

Didn't Carrie Ann once disclose she had a chronic auto-immune disease?  I don't recall what it was, but it was in addition to a spinal problem she had or has.  She'll probably declare a sisterhood with Victoria. 

[stcroix]

I had an episode where my left leg went numb for a few hours off and on-- it was VERY scary.  I could hardly walk because I couldn't tell if I was really moving it or not and whether it was on the floor and would hold my weight.  So my question is just how can Victoria dance, jump in ecstasy with high heels and clapping over a judges comment and quickly walk without any problems?  I'm just curious.  I don't doubt her horrifying story and wouldn't wish that on anyone, but I'm having some doubts that she's still so numb in the legs and feet that she can happily giggle that it's nice that she cant feel all the pain her feet are going through from the way they're looking....  (not the exact correct words, its getting late here) .  She's a very coordinated young woman and I'm rooting for her success but something about this 'numb, pins and needles feeling' is making me go hmmmm.......  

[Wings]

9 hours ago, stcroix said:

I had an episode where my left leg went numb for a few hours off and on-- it was VERY scary.  I could hardly walk because I couldn't tell if I was really moving it or not and whether it was on the floor and would hold my weight.  So my question is just how can Victoria dance, jump in ecstasy with high heels and clapping over a judges comment and quickly walk without any problems?  I'm just curious.  I don't doubt her horrifying story and wouldn't wish that on anyone, but I'm having some doubts that she's still so numb in the legs and feet that she can happily giggle that it's nice that she cant feel all the pain her feet are going through from the way they're looking....  (not the exact correct words, its getting late here) .  She's a very coordinated young woman and I'm rooting for her success but something about this 'numb, pins and needles feeling' is making me go hmmmm.......  

I don't understand this either.  Maybe she means her legs are numb to the touch but she can feel the pressure of the floor when she walks.  

"Transverse Myelitis, a rare viral disease that left her in a four-year long coma and without use of her legs for nearly 10 years."   

"In June of 2010, Arlen, determined to reach her childhood dream of competing in the Olympic Games, returned to the pool for the first time in years. In the spring of 2012, not only did she participate in four events at the London Paralympic Games, but she also took home one Gold and three Silver medals while also setting a world record in in the 100-meter free."

She must have had significant muscle atrophy after 10 years of not being able to use her legs.  She was able to swim?  

Maybe her story has been exaggerated to add drama to this show. ???  It baffles me.  There are some puzzle pieces missing. 

Edited September 26, 2017 by wings707

[Lady Calypso]

9 hours ago, stcroix said:

I had an episode where my left leg went numb for a few hours off and on-- it was VERY scary.  I could hardly walk because I couldn't tell if I was really moving it or not and whether it was on the floor and would hold my weight.  So my question is just how can Victoria dance, jump in ecstasy with high heels and clapping over a judges comment and quickly walk without any problems?  I'm just curious.  I don't doubt her horrifying story and wouldn't wish that on anyone, but I'm having some doubts that she's still so numb in the legs and feet that she can happily giggle that it's nice that she cant feel all the pain her feet are going through from the way they're looking....  (not the exact correct words, its getting late here) .  She's a very coordinated young woman and I'm rooting for her success but something about this 'numb, pins and needles feeling' is making me go hmmmm.......  

I wish I knew more about biology, because I'm curious about this too. I think it's not complete numbness in her legs, but it's quite possible that she just can't quite feel the connection from her legs to her feet. I did note that Val had his arm wrapped around her waist as they walked up the stairs to get their scores; my first thought was maybe he was helping her because she couldn't quite walk up the stairs herself, or she was afraid of falling. 

Possibly, her story was exaggerated for the show, but I don't doubt that she probably doesn't have much feeling in her legs, not 100% at the very least. And she seems amazed at herself that she's doing what she's doing. She does feel very genuine in her joy and surprise at dancing each week; I know she's only been through two dances, but she really does seem as surprised as we do.

It also seems like Val's sticking to the more simple movements, judging by how her dances have been going. He's pushing her, but it's not like he's getting her to be doing flips and such. 

[boyznkatz]

1 hour ago, wings707 said:

She must have had significant muscle atrophy after 10 years of not being able to use her legs.  She was able to swim?  

Maybe her story has been exaggerated to add drama to this show. ???  It baffles me.  There are some puzzle pieces missing. 

That's the thing. Her muscles on her legs don't look atrophied at all. You would think after ten years with no use of her legs, her legs would be a lot smaller. I'm not a doctor, but it just sounds fishy. I know some people who use wheelchairs can stand up and walk a few steps. I wonder if that was the case with her.

Not doubting that she had a bad disease but the show does tend to exaggerate things.

[Wings]

Something does not add up here.  

[smiley13]

I am glad to see that I am not the only one who thinks her story has something missing.  With this show you never know.

[cbetsky]

I know the show exaggerates things. but I don't think there's a snowball's chance in hell that she would have been allowed to compete in the paralympic games without thorough vetting. A big part of her physical therapy at the treatment center she went to involves moving the muscles in a way that is similar to the way that they "should" move, partly to retrain them and partly to keep the muscles from atrophying (this is what I gathered from viewing the website). Also, she's been walking again for a year or more now, which would also build those muscles back up.

Also, it is entirely possible to swim without the use of your legs. It's not as easy, but it's possible. 

[Wings]

2 minutes ago, cbetsky said:

I know the show exaggerates things. but I don't think there's a snowball's chance in hell that she would have been allowed to compete in the paralympic games without thorough vetting. A big part of her physical therapy at the treatment center she went to involves moving the muscles in a way that is similar to the way that they "should" move, partly to retrain them and partly to keep the muscles from atrophying (this is what I gathered from viewing the website). Also, she's been walking again for a year or more now, which would also build those muscles back up.

Also, it is entirely possible to swim without the use of your legs. It's not as easy, but it's possible. 

Yes, I get all of that.  Just saying something is off.  She does have that disease, no one is saying otherwise.  

Feeling nothing in her legs is what made me curious.  Semantics perhaps, she may feel something.  Someone needs to sneak up behind her and jam a knitting needle in her thigh.   Okay, that was terrible.  This show is dull and I just came off of watching BB.  Cut me some slack, my snark is on full tilt.  I calm down after awhile. 

[boyznkatz]

I thought I read something about her being disqualified for the world championships after she won the  paralympics though. Something about not being "disabled enough." She seems nice enough but something just seems off about her story.

[Katydid]

I can't speak for her situation in terms of ability to dance, but at least in my experience with paralysis, I can feel pressure even where I don't sense pain or temperature. My spinal defect is in the lumber region of my spine at a level where I can feel the tops of and between my legs down to my knees but not the back of my legs and below my knees. But I can still feel pressure from sitting or when I have my feet on the floor to transfer out of my chair. Of course my condition and her situation are very different and I'm not in DWTS, so who knows. She has movement where she apparently doesn't have sensation, so I dunno. 

As for swimming without using your legs, I've been doing it since i was 3 (though not competitively). I do have the ability to use my stomach and thigh muscles, but I can't kick the way many people do. My legs just float and my arms propel me. 

Edited September 26, 2017 by Katydid

[McManda]

She reminds me, looks wise, of a season 1 Ashly DelGrosso.

[Uke]

Glad to see I'm not the only one wondering about this.   On Monday night on Emma's instagram stories I watched Victoria and Vanessa  jumping up and chest bumping each other, laughing and having a good time.  No hint of balance problems and she didn't appear to be making any effort to balance herself.   I'm wondering if it might be neuropathy (nerve damage that causes numbness and a tingling or buzzing sensation, usually in the extremities but can occur anywhere in the body).   I had a fairly severe case (chemo-induced) in my feet and toes and for a while I needed a cane outdoors because I couldn't feel the uneven pavement/sidewalk surfaces.  I could still walk - I just didn't have enough sensation to differentiate the difference in surfaces.   I also had it in my hands and fingers and I had to be very careful not to cut or burn myself because I couldn't feel it (ex. Once I blistered my fingertips when I grabbed a slice of toast that had just popped out of the toaster.  In the moment it took to realize I should not be able to do that, I burned my fingers).  Neuropathy can be caused by many different things and I'm wondering if this is what she explains as numbness or lack of feeling in her legs

[SnarkyTart]

Quote

Victoria was struck with a disorder called transverse myelitis in association with acute disseminated encephalomyelitis or ADEM. "I got the double whammy," she said.

Transverse myelitis is a neurological disorder caused by inflammation of the spinal cord. Attacks can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body.

The condition occurs in both adults and children, but is often seen at younger ages. About 1,400 new cases are diagnosed each year in the United States, according to the National Institutes of Health. About 33,000 Americans have some kind of disability resulting from the disorder.

Transverse myelitis can occur as a complication of measles, Lyme disease and some vaccinations.

"It's not so rare," said Dr. Clifford B. Saper, chairman of the department of neurology at Beth Israel Deaconess Medical Center in Boston, who has not treated the teen, and in some cases it can be reversible.

"If someone were still paraplegic seven years after transverse myelitis, it would not be reversible

http://abcnews.go.com/Health/paralyzed-swimmer-banned-paralympics-elicits-outrage/story?id=19962043

[katha]

The article is well written and clearly explains that the decision to disqualify her was controversial. Nowhere does it state that she faked it or that she's somehow pretending when it comes to the problems with her legs. The ICP got hung up on the fact that her state wouldn't be permanent and that she'd get better with time. And she has gotten better with time. So I fail to see where the scandal is?

The rumba this week also made it bleedingly obvious that her range of motion is severely limited. Val tried to be nice about it and tried to cover for her. But IMO it was very clear that the rumba looked like it looked because she couldn't do much else. Being able to use your legs and walk is not the same as doing the more complex movements necessary in all kinds of dancing.

[Wings]

I have not read she faked anything.  I don't remember the article using the word scandal but it caused an uproar, anyway! 

I understood why she was not allowed to compete. The rules are clear. Your disability has to be permanent.  

[boyznkatz]

I don't think anyone is accusing her of faking. I was just pointing out that TPTB have a tendency to exaggerate stuff for ratings. If her range of motion is that limited she probably shouldn't be on the show IMO. Amy and Nyle were disabled but they could still do the required dances.

Edited September 30, 2017 by boyznkatz

[Uke]

I'm not saying she's faking - absolutely not.  But I do question whether Val might be over-playing her disability much like Derek hung on to Amy as if she couldn't stand or walk on her own.   Of course Amy could stand, walk, win medals for snowboarding, and I think she even danced in a music video.  Learning to dance was, of course, challenging but she was presented as needing someone (Derek) to hold her up until she could fly free on her own.  It was a story line and I wonder whether Val is trying the same type of story line for Victoria.

[tessaforever]

On 9/9/2017 at 0:37 AM, madpsych78 said:

What about wheelchair freestyle?

What a crystal ball you have!! I did not care for the wheelchair aspect of their dance at all, and Victoria looked uncomfortable too, which was hard to watch (I think she was going for sad, but it came off as uncomfortable). 

Also, I'd like to hear more about Victoria as a person. How did she get her sportscaster job? What does she like to do now that she has her life back? 

[spanana]

I tend to agree about wanting to hear more about Victoria as a person.  Her package every week so far has either been about her disability or being bullied because of her disability.  For story week it's expected of course, so no judgment there.  But let's hear about her other interests.   What are her likes/dislikes?  As tessa said, how did she start working for ESPN?