Connections: Multiple Sclerosis in the Media

In their article “The Depiction of Illness and Related Matters in Two Top-Ranked Primetime Network Medical Drama in the United States”, Ye and Ward (2010) were interested in investigating the diseases, injuries and patient demographics portrayed in Grey’s Anatomy and ER. The authors were very descriptive in their sample selection starting with how and why the programs chosen were selected. Using the recently available DVD seasons for each show was a novel way to investigate the content. However, as a result of this self-imposed sample limitation to only DVDs which are available, one study limitation that the authors mention is the asynchronous nature of the shows studied. That is, the researchers did not study the shows during the initial air dates. The characters, content and plot line of the show do not change because you watch it on DVD and are not (to my knowledge) affected by the asynchronous or synchronous nature of the viewing so why mention it? Perhaps I am thinking about it with 2012 eyes and with knowledge that time shifting is on the rise. Would using Hulu (with a one day turnaround from air date) make any difference in this disclosure?

Ye and Ward provide great detail to the operational definitions of their variables. The categorization of the type of illnesses to be coded is not only helpful in replicating the study but is also helpful in establishing a general categorization of these illnesses for future research.

In the results section, Ye and Ward state that “461 injuries, illnesses and diseases were identified” (P. 562) but it is not known whether this number represents 461 unique illnesses or a running tabulation of all illnesses (where duplication can occur). If it is the former then that is a ton of illnesses but if it is the latter then that could mislead one to think that a ton of illnesses are represented in these educational entertainment shows.

In the discussion section, Ye and Ward suggest that “more attention to chronic diseases is needed” and support this claim by providing evidence from their current research indicating that “fewer than 10 diabetes cases were identified.” (P. 565)  Ye and Ward then go on to suggest ideas for further research to examine other medical shows such as House, Scrubs and Nip/Tuck. This brings up an interesting point. House frequently uses Multiple Sclerosis and/or Lupus as a first diagnosis but it never ends up “sticking” and the patient always comes out with something else in the end. Putting these two ideas together, it would be interesting to see what chronic diseases are frequently found in entertainment education media and specifically what context they are used (diagnosis vs. misdiagnosis). It is such a pervasive parody on House that there is even a (unofficial) T-shirt about it…

Here is a link to two (of many) lamentations regarding the way House treats MS and chronic diseases in general  – http://www.medhelp.org/posts/Multiple-Sclerosis/Dr-House-and-reality/show/1046522 & http://lupusandhumor.blogspot.com/2011/05/its-never-lupus-may-10-is-world-lupus.html.

The House MD social game also pokes fun at the misdiagnosis of Lupis.

What does Multiple Sclerosis look like in the media? 

House
Who constantly misdiagnoses MS (& Lupus and other autoimmune diseases):

• Season 1, Episode 2 (Paternity) – Sexual abuse is the first misdiagnosis then the team decides it is Multiple Sclerosis. It turns out to be measles.
• Season 4, Episode 6 (Whatever It Takes) – Heat stroke is the first misdiagnosis then Miller Fisher Inflammation and finally MS or Lupus. In the end the patient is sick from eating too many Brazil nuts.
• Season 4, Episode 10 (It’s a Wonderful Lie) – Breast cancer is the first diagnosis but the MRI of the chest comes up negative. House then orders an MRI for MS. It turns out to be Breast Cancer in the patient’s leg.

Law & Order: Special Victims Unit

• Season 11, Episode 17 (Disabled) – Black female victim has multiple sclerosis and is quadriplegic. Disturbing scenes of caretaker violence against the woman by her caretaker sister.
• Season 3, Episode 8 (Inheritance) – Benson and Stabler visit a person of interest with primary progressive MS. He is an older black male shown in a wheelchair and ostensibly housed in a group home.
• Season 4, Episode 9 (Juvenile) – Benson and Stabler visit a person of interest who is a part of a medicinal marijuana club/co-op in the city. She is a young, professional white woman who states that “The only thing that controls my tremors from MS is smoking once in a while.”
• Season 13, Episode 17 (Justice Denied) – Benson finds out that the officer who logged a scarf into evidence was color blind due to early onset Multiple Sclerosis. A false conviction of a serial rapist occurred due to the officer’s claim that the scarf was green (instead of red).

Other

• The Talk  (18 June 2012) announced Jack Osbourne’s recent multiple sclerosis diagnosis. Sharon Osbourne was visually upset through the announcement and was hesitant to speak.
• Accused (6 December 2010); Season 1, Episode 4 (Liam’s Story) – The accused Taxi driver’s (Liam’s) wife suffers from “progressive” multiple sclerosis. Liam mentions this to the woman whom he is stalking and from whom he has burgled. The wife is shown in a wheelchair and in a consistently depressed state.
• West Wing – The president has multiple sclerosis but does everything he can to hide it.
• Cold Case (2006); Season 3, Episode 16 (One Night) – Terrible misrepresentation of MS including mention of it as a “terminal” illness. Most individuals with MS live regular life spans…just stuck inside a body that does not want to cooperate. In this episode, the serial killer has MS but this is not disclosed until the police visit his wife. His (estranged) wife tells the police that the husband called recently to tell her that the tremors came back. This, to the husband now serial killer, indicates that he is “dying.” In other words, a relapse triggers the man to kill young boys because “they don’t realize what life is worth” at that age.

Celebrities

• Annette Funicello – Actress (Mickey Mouse Club) and singer
• Richard Pryor – Actor (See No Evil, Hear No Evil), comedian and writer
• Montel Williams – Talk show host and MS champion
• David “Squiggy” Lander – Actor (Laverne and Shirley), comedian and musician
• Jack Osbourne – Actor (The Osbournes) and media personality
• Jonathan Katz – Writer (Dr. Katz, Professional Therapist), comedian, actor
• Alan Osmond – Singer (Osmond Brothers)
• Teri Garr – Actress (Young Frankenstein)
• Betty Cuthbert – Athlete (Australia)
• Lena Horne – Singer (Stormy Weather and other Jazz favorites) and actress
• Clive Burr – Musician (Iron Maiden)
• William Hartnell – Actor (Doctor Who)

References:
Ye, Y. and Ward, K.E. (2010). The Depiction of Illness and Related Matters in Two Top-Ranked Primetime Network Medical Drama in the United States. A Content Analysis, Journal of Health Communication, 15(1): 555-570.

 

Expect nothing and you will not be disappointed

As requested in the first week of class and as an extension of my “About Me” page, here are my responses to the three class content questions.

• What would you like to see on the syllabus?
  The syllabus and reading list seem robust. I would prefer only one week on Ludology vs. Narratology and more time spent on social gaming but I am admittedly biased toward social anything phenomenon.
• What do you generally want to cover?
  I would be most academically interested in social identity acquired through games and by extension social networks linked with game play. Since online multi-player games are so popular and playing games with “friends” is usually more fun than playing with strangers, are gamers more likely to publicly post information hoping to attract new players to their game of choice. It’s a bit of a stretch to tie this class with my thesis (publicly available information on Facebook and the social identities formed) but I recognize that I am in this class more for personal and (later) professional interest. I am interested in an education doctorate as well so the Games and Learning weeks will be especially helpful.
• What do you specifically want to cover?
  I would like to walk away with a general extension of my knowledge of theory. I am hoping to cover some theories which explain the psycho-social needs video games fulfill beyond uses and gratifications theory. The escape from grounded reality to an alternate reality that both games and the Internet can provide is also interesting. I guess in the end I would like to be able to deconstruct, analyze and reviewing a game’s merit (social, educational, etc…) based on some known theory.

 

 

Move to Orlando and a diagnosis

It’s time for an update as a lot has happened in the past month and a half. Where to start…

Charlie and I have successfully moved from Clearwater to Orlando. Unfortunately, we do not have jobs yet, but we will soon, hopefully…if anyone has any leads in the metro-Orlando area please send them by my way. Job leads dealing with computers and communication (pr, event planning, writing) are always appreciated.

The new apartment is pretty nice. It’s called Vintage on the Green or Knightsbridge depending on who you ask.

The only downfall is that we are just 2 miles from a coal power plant.
I haven’t found any news articles that say it is a health hazard…yet…but to be safe we are not drinking the water at my grandmother’s request. :o)

 

So, you may be asking why I left a good paying job and moved to Orlando? For starters, Charlie is finishing up his bachelors at UCF and so it was necessary to move as we share one car and that commute would have been brutal. AND my job was affecting my health. The politics (and I mean more than the usual …even more than academia) and CONSTANTLY being thrown under the bus were causing undue stress and my body was reacting. At the same time, I was undergoing tons of MRIs and testing to see why I had lost my eyesight in my right eye. I looked like a pirate for a while there. Turns out that I do have Multiple Sclerosis and the stress from work was causing me to replapse and could possibly cause permanent damage. For right now, this blog will be available only to those people on the list. lol, that sounds like I own some schwanky night club. Employers can see this if I make it public and I don’t want anyone to think I am incapable of doing the job. I have dealt with stress almost all of my 27 years and I know my limits. I was doing my job well, my boss can atest to that, but I was getting sick and so something had to give.

Well, now I am on “Rebif” medication to control the MS and hopefully it will also control any future relapses. All of the MRIs did not show any lesions, which is fantastic and which means that I am catching this very early. The doctor diagnosed me based on the fact that I have oligoclonal bands in my spinal fluid and have experienced two different symptoms unexplainable by anything else – loss of use of my legs and loss of vision in one eye (optic neuritis). There have been no long term studies on the effects of this drug so we will just have to see where it takes me. I’m positive though and I appreciate all the support that my friends and family have given and will continue to give. I took my first dose yesterday and did not receive any side effects. Yay!! The drug has an auto injector device that reminds us of the injector things in Star Trek so the 3x’s a week injections aren’t so bad. :o)

Well, that’s pretty much the biggest parts of the update. I will write more when I don’t have a pressing need to find a job.

Oh! And please feel free to ask any questions about MS if you would like. I’ll post a short video with general information if you want to get an idea. Hope all is well with everyone out there!

 

Interviewing skillz

It’s been a month since Charlie and I moved to Orlando. We have both been to interviews with at least 3 different temporary agencies. Charlie has received work already but I am still waiting on any assignment. Since we need money in the meantime….pesky rent and car payments…and no one was calling me with anything, I needed to find a job ASAP.

So I apply to be a game tester at EA.

For those that know me, I’m a fairly avid gamer. I roomed with guys (and game playing girls) in college and played them in many different games. I, like most of you, come from the game playing generation so it didn’t seem like a stretch to try and get paid to play games.

So I get a call back from EA for a phone interview and I bomb it. I’m asked who won the Superbowl? I said, I don’t remember. I’m asked who the major sponsor for Tony Stewart is? I say, I couldn’t even begin to tell you. I’m asked what the four BCS bowl games are? I try very hard to remember all four but can only come up with 2 so I don’t answer. Yet, the man on the other end seems to think that I would be a good fit for an EA QA Tester. Alright, I’ll go with it and I schedule a face-to-face interview for that Friday.

Friday comes and I arrive at the area where the other QA Tester wannabes are waiting. A security guard comes out to greet me. It’s a high security area and people have to swipe their badges to get in and out of the building. Hordes of people file into the building as we are waiting. I see only a few girls and lots of guys. This doesn’t surprise me as this division of EA is responsible for sports gaming and let’s face it, I’m sure that women are not lining up to get a job testing sports games….except me that is.

So, I get called back for the face-to-face interview and I bomb that as well. I’m asked on a scale of 1-10 what is my level of attention to detail. I fall into this trap nicely and I say 11 without hesitation. Then I quickly regret that move. I’m called on it. The interviewer says, ok, let’s test your attention to detail. Close your eyes and describe the room, how many windows, how many chairs, what’s on the wall, how many light fixtures, what is the name of the room, what are the guys interviewing me wearing, what are they drinking? Yup, I’ve just been schooled. At this point, I believe that I have no way of getting this position and so feel that I am running a reconnaissance mission for Charlie instead. BTW the room name I did get and it was Dagobah.

I’m asked what I would do if someone on the QA team wasn’t holding up their end of the team work. I tell them I would asked them to help but if they didn’t still contribute to the team, I would tell a supervisor. It would suck to release a game with lots of bugs to the market. The consumer would hate it and the QA lead’s ass would be on the line.

I’m presented with an ordinary pen and asked if I was with the ABC pen company how would I -QA Test this pen and what other uses for a pen can I think of? I say that I would take the pen apart, write with it and try to exploit its faults. My three uses for a pen? To hold up your hair (betcha that’s primarily female answer), to mark your place in a book and to chew on to relieve stress.

I’m asked about some more game environment testing questions. What would I do if there was no game play available and only menu screens? Compare the testing of the game environment for SSX Tricky with an up-coming NASCAR game- How would you test these differently? How would you test them the same? He asked this explaining that I was more familiar with Tricky than NASCAR. He got this information from my disclosure earlier that my weakest point was NASCAR and from the fact that I wrote that I had played Tricky frequently.

So, they think in an interview, interesting…

At this point, I’m buying into this interview. I may not get to work at EA but I am determined to learn from this interview. I start to let my hair loose. I crack a dry joke and see the reactions. One interviewer smiles to himself and the other has his poker face on.

I, on the other hand, never have my poker face on unless I’m playing poker. I’m reacting to each question with sincerity and as much quick thinking as I can muster. I’m saying things like, interesting question both because I honestly think it is interesting and because I’m trying to buy some time. I know, they can see this plainly on my face.

And then we get to the last question: Tell me a joke.

Very interesting…I smiled to myself and looked up for a brief moment. Got into character and said, “So this duck walks into a bar…” Now in true tribute, I screw up the joke but stay in character long enough that they have to laugh. I left the room feeling accomplished and was asked to sit in the lobby while they discussed.
I waited for 3 minutes and he came back out to get me. I’m just inside the door with all of the computer terminals and consoles set up. It’s dark and interesting but also smelly and not what you probably would imagine. I firmly believed that this would be the last time I saw QA testers in action and so I took it all in, with all of my senses. And then he hands me some papers and says welcome to EA and I’m sure my face is saying “What?! You’re kidding, right?”

So that’s how I got a job as a quality assurance tester at EA-Tiburon testing sports games. I’m still very much hoping that Charlie will be called in as well next week. If we both have a job in the same building that would be fantastic. Less money in gas. However, I’m also hoping to get a 3 month contract working in public relations at $15.00/hour and getting benefits to boot.

I’ll let you know how it pans out…

Yikes! Will things be looking up for EA?

Here’s one story about working as a QA Tester
and a livejournal made for EA spouses.

 

My eyes…the goggles, they do nothing!

Testing
IVs
MRIs
Spinal tap
More testing

Getting sick sucks and that’s the truth. The team of doctors not knowing what you have (or knowing and not telling you) is worse.

Here’s the deal real simple – I went completely fuzzy in my right eye for 2 weeks+. And by completely fuzzy I mean I haven’t driven a car because I can’t see that well and couldn’t read the top line of the eye chart when 6 inches in front of me. The computer screen at work was a pain to deal with as I would get headaches trying to read the text using both my eyes so I had to wear an eye patch while this gets sorted out…did I mention I work with computers all day? This makes working all the more difficult and frustrating on top of the office politics and general stressful work environment.

I had previously blogged about pain in my wrists and hands as well as numbness and tingling in my feet and fingers. The doctors shrugged that off as carpal tunnel syndrome and attributed the pain in my legs/feet tingling to mild spinal stenosis which they found with the first MRI. I was scheduled for physical therapy (which I am in now) and have only been to one session but the pain in my hands and wrists is better. I’m sure I have a mild form of carpal tunnel, who isn’t going to have that in this day and age, but the sudden visual loss has the doctor’s stumped. Officially, the only thing I have been diagnosed with is Optic Neuritis. But do me a favor….google “optic neuritis” and check out the first few results. You’ll see the full effect of this diagnosis by the first few hits.

No, I don’t feel doomed. No, I’m not depressed. I’ve got awesome support with Charlie and family and friends, I know. But I also know (from very personal and real experience) that if they do find something on the next MRI (scheduled for Thursday) or if not the MRI then the spinal tap then I’m in for a long haul of medications, ailments and possibly (and hopefully only temporary) paralysis. Fun stuff, eh?

So what do I know?
I think it’s really too early to tell but all roads do seem to lead to Rome. My legs went out on me a year ago for a few hours and I couldn’t walk. That was my first wake-up call. My mother had clean MRIs for a long time and the only way they were able to diagnose her was through a spinal tap. I know that there are new drugs out there that weren’t available in the 80s so there is progress in the field. I know that these new drugs are all injection based so I best not be afraid of needles if it comes to that. I know that the doctor put me on IV steroids (typical Optic Neuritis treatment – SoluMedrol) and my eye got better but is still fuzzy. I know that it isn’t the end of the world and I may just get better placement in lines at Disney – priorities you know! I also know that if I do have MS I’m going to be a fighter. There will be good days and bad days. I know that no one, except those going through it, will understand the pain and frustration fully. I’ve lived with my mother and seen the effects this disease can have at its worst and I’ve seen the effects that giving up to it will cause. Unlike others, I get the chance to go into this with open eyes and more of an understanding than most newly diagnosed. I know that my friends are going to have questions and, as always, I’m ready to answer what I can.

-Is it hereditary? They don’t know but there is a 10 percent increase in your chance of getting it if you have a family member with it. That’s a small increase in the grand scheme of things but enough to mention. Also, I do not plan to tell me mom either way it goes. It’s a tough decision but she has a lot she is going through herself and I know her…if I am diagnosed, late at night when no one is watching she will cry and blame herself although she did nothing wrong…and that breaks my heart in so many ways.

-Is it contagious? lol, no.

-How do you get it? Your guess is as good as theirs. There is a belief that at some point in your life you come into contact with an unknown virus which stays in your system until it is called into action. I’ve heard and talked to many people who, like me, believe that extreme stress (ie – giving birth, car accident, etc…) triggers the MS to surface.

-Are there any breakthroughs? Medical science has progressed but not that fast. Next to Polio, MS is still the leader in young adult paralysis. As far as science can tell it is an autoimmune disease – file that with Rhuemetoid Arthitis, Graves and Lupus. Your body thinks its doing the right thing but ends up attacking itself. So you see, my confusion on where I last left my keys (or my glasses) may be an innate part of my general brain confusion which I can’t control. At least, I like to think of it that way :o)

Will you be different the next time I see you? I have no idea. Sorry for all the vague answers but everything is always going to be up in the air. My back will hurt sometimes and it may get hard to walk at times so I may end up using a cane. My eyes may come and go fuzzy so I may have an eye patch. As I said before though, I haven’t been diagnosed with anything except Optic Neuritis and if I am diagnosed with MS there are treatments that I can try …so hopefully, no I won’t be different on the outside and the inside is pretty strong too. But hey, we all have our limits sometimes.

In summary, I just wanted to send out an update for being MIA…lol, in case anyone noticed. I’ve done a great number of wonderful things and accomplished a lot of goals already in life. I’ve met someone who makes me exceptionally happy, planned weddings, conducted major events, lived in NYC, worked for the government, made more than $45K, taught a class, marched in college, participated in plays and graduated from UF – all personal goals done by age 27. There are still lots of things I want to do like finish my thesis, teach some more, live in Europe, own my own business, pop a kid, the list goes on. Whatever I have is just a speed bump in the road telling me to slow down and take it all in, take care of myself and others and not let the stress of living in this world get in the way of being in it.

Peace to all. I’ll update again when I have more information.

 

New York City Marathon Yonkers Hudson Riverfest and Public Works, Inc.

My Event Work in New York
Hudson River Park’s 5th Annual Blues, BBQ & Fireworks Festival

Line-up:
Big Bill Morganfield
Deborah Coleman
Koko Taylor, et al

I was a general do-girl at this one with great help from my friend Amanda. From replacing the waters for the talent to delivering their food to crowd control – my main duty was to be sure that everyone was smiling and happy. What I remember most is when I cut apart some of the chairs to move a handicapped couple from the back “handicap” row to the 5th row. It isn’t equal treatment to stick disabled people in the back just because it is easier. They enjoyed the rest of the show with everyone else.
New York City Marathon
I’m working in the main van at the New York City Marathon. We were in charge of the meet up at the end of the marathon, but by the time that all of the marathoners were back in Manhattan most of the other event specialists were running things from this van as well.

 

 

 
Roosevelt Island Fireworks July 4

I probably had the most fun at this one. Charlie and my sister were both able to attend. I was running the check-in area and then general do-girl once that closed down. There is this great insane asylum ruins on the island that we had to pass to make it out to the point. We could see the barges that lit the fireworks just in front of us and everything we did on the island was coordinated through walkie talkies with the fire department.
Yonkers Riverfest

This was a very interesting day. Started out in the morning with a torrential downpour but with my friend Jeff and Charlie, we were able to get everything set-up in spite of the heavy rain. It was wet and soggy for most of the day which probably affected the turnout but it was a good event nonetheless. This is a pic of the end of the day concert. We had to leave shortly after to catch the last train to the city.

All of these fantastic memories thanks to Public Works, Inc. Lewis rocks the party!

 

Happy Thanksgiving

 

I sincerely wished I had a video of my Thanksgiving this year. I was/am sick with a nasty cold so the camping trip that Charlie and were planning to go on got nixed. Also, now that we are both out for the count, we are unable to go to Orlando to visit Charlie’s family. So, instead of try to cook something, we decided to stop by my grandmother’s Thanksgiving dinner (can you really call it dinner if it is 2pm in the afternoon?) for some turkey and trimmings.

Well, can you believe that at 27 I was regulated to the kiddie table. I had just moved up to the adult table recently but since there was company coming over (my grandmother’s new beau) my sister, Charlie and I had to sit at a makeshift table. It was classic. And only then did I remember how much better the kid table can be compared to the adult table.

While adults discussed long dead actors and the state of the union. We “kids” tried to figure out how best to change the subject. When biological warfare came up – I eagerly changed the subject to the something more bland like the weather. When the “we don’t like the French” topic came up – I called the person simple minded and they quickly back peddled to a chorus of ums and ahs.

In previous years, I would have been shushed quickly and scoffed for being young. But – no, this time my grandmother encouraged me to speak out and give them a piece of my mind. Of course, I was slow to respond. Being hopped up on meds caused me to pause and think for a moment before I opened my big mouth. And I wondered what exactly had been going on in the geriatric and young adult population to turn the tide since last Thanksgiving? I was in no mood to discuss these things at what is supposed to be the “let’s love the family” dinner. We missed saying Grace, and do you know who my grandmother apologized to for this? Me.

So I say, hoorah! for the kiddie table. Although some of you may have found your way to the adult table this year: keep in mind that you can put the kids in another room at another table…but you can’t keep the kids down. It has been and will always be THE table to be at.

Oh and to put an even bigger spin on this whirlwind of a Thanksgiving (remember I was on many meds) on his way out, my grandmother’s beau said, “Happy Thanksgiving to you, your husband and your daughter.” Interesting how things appear to the senile but I salute you as I watch the passing of the torch in 3-D.

For the Nickelodeon Generation.

Meet Chester