I think I'm done with tecfidera. Ocrelizumab seems to have at least a name from the feds, so approval looks imminent if not already done. I'm ludicrously exhausted. Honestly, I give tecfidera credit for weight loss, but I'm just hammered with fatigue, limping, cog-fogged... Really, maybe I just improved because of the steroids when I relapsed. I feel like crud, unusually so.
I have no idea of it's working. My neuro is happy I'm not on crutches now due to weak legs, but they sure tire fast! After all, I work primarily with my brain, not my feet, so I am more worried about cog problems than limping or not.
I'm not sure what else to do about the fatigue--already use adderall to stay awake, but it's not enough lately.
I don't want my bday to dawn when I feel this way, and it is RIGHT around the corner! Ugh, ugh, and damn.
Friday, September 30, 2016
Thursday, August 11, 2016
Cross-post: Lionel Barrymore and wheels on film
Wheels & Crutches & Canes, oh my--why I bother to research an old movie actor
This is a cross-post form my other, much newer blog: Barrymuch, Barrymore, Barrymost: Lionel Barrymore, obsessively. It's on a member of the well-known Barrymore acting family (Lionel's brother John is Drew Barrymore's grandfather) who for the last quarter or so of his life lived and acted in a wheelchair. His popularity never seemed to wane--and this was in the 1930s, ladles and gentlemints.
He was a damn impressive actor and a very interesting member of a stupendously complex and flawed family, and he also held his own while in horrible pain physically. I wrote this to explain to my (few) readers why I bother researching his work and life, especially if they're not familiar at all with disability studies.
You might find it interesting, gentle reader! If not, well, I'll get back to being more morose on this blog soon! :)
This is a cross-post form my other, much newer blog: Barrymuch, Barrymore, Barrymost: Lionel Barrymore, obsessively. It's on a member of the well-known Barrymore acting family (Lionel's brother John is Drew Barrymore's grandfather) who for the last quarter or so of his life lived and acted in a wheelchair. His popularity never seemed to wane--and this was in the 1930s, ladles and gentlemints.
He was a damn impressive actor and a very interesting member of a stupendously complex and flawed family, and he also held his own while in horrible pain physically. I wrote this to explain to my (few) readers why I bother researching his work and life, especially if they're not familiar at all with disability studies.
You might find it interesting, gentle reader! If not, well, I'll get back to being more morose on this blog soon! :)
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| Lionel Barrymore as Dr Leonard Gillespie, left; Lew Ayres as Dr. James Kildare, right, The People vs Dr. Kildare, 1941 |
Tuesday, July 26, 2016
Cross-post from my new blog: Lionel Barrymore, wheelchairs, acting, oh my!
Over at my new(er) blog, Barrymuch, Barrymore, Barrymost: Lionel Barrymore, obsessively, I recently wrote a bit on wheelchairs, Mr B, and film and whatnot. For those who don't know, Lionel Barrymore remains one of the very few actors who had a long career even after he required a wheelchair starting in 1938. He rolled an awesome path for people to get their brains around a person in a film who actually used a wheelchair, but oddly, the 1950s (Mr. B died in 1954) seemed to roll back some of the positive forward motion he all by himself had made in representations of disabled, wheelchair using-folk in film. He seems to have single-handedly pushed aside all kinds of barriers and his films and he himself were wildly popular, starting in 1938 with Young Dr. Kildare--indeed, House, MD seems to have ripped off the cranky, disabled diagnostician routine whole cloth from Barrymore's Dr. Gillespie!
Mr. B had no pretense of being any kind of hero or "supercrip", but really felt driven to keep working and had a studio (MGM) whose head both personally like Barrymore and who wasn't stupid enough to think he could let such a good, popular actor slip away. Once in a while, extremely rarely, he would use crutches in a film, and could use them if he needed to in daily life, but he truly disliked them. I am utterly fascinated by him and his acting, and yes, his work before 1938. Fascinated person.
Astute readers probably noted I mentioned I have a blog on MS. That's
because I have relapsing-remitting MS, Dxed 2009. I'm probably one of
the lucky ones. Now that I think about it, in a roundabout way it led
me to Lionel Barrymore's acting, so I'm quite lucky! [Note: his brother John is indirectly responsible for my grad degree...more on that later!]
In reading about LB and his chair, what I found interesting is the Kildare films were done so well (Bucquet directing very nicely many) the wheelchair became almost irrelevant to the plot. Now and then, we are reminded of the good Dr. Gillespie's need for it, but the doc himself is never an object of pity. We learn very quickly there's nothing to pity about Dr. G!
There are the typical "hero" disabled person moments spoken by others, as when an aside is used to "prepare" people who are about to meet Dr. G for the first time, along the lines of "he's brilliant, but his legs are hopelessly crippled". They become fewer as the films continue. I've seen that used in just about every film with someone in a wheelchair who has a major part. Now, I can see the need to establish the background story quickly, but seemingly, given the popularity of the films, LB was the attraction, and the fact he was acting circles around people while IN a wheelchair meant his skill "normalized" for viewers a person in a wheelchair.
I'm not claiming he did this all on his own, or that he even meant it to happen. He does note he's a good "jockey" in his chair and doesn't mind answering or forwarding to his chair manufacturer letters from the public about it. Others, including Ronald Reagan, noted the already skilled scene-stealer would use his "chromium contraption"* to great use in dominating a scene--even smacking into people's shins with the wheels. LB is absolutely masterful in the films in the way he moves his chair to emulate what he'd likely be doing on two feet. It's really astonishing.
I think without LBs incredible talent, a shift in the audience's acceptance of a character in a wheelchair who actually USED a chair in life would not have happened. How many actors in wheelchairs who really need them can you think of? I think the financial success of the films testifies to the acceptance of Dr. G and he seemed to walk-off, if you will, with just about every Kildare film. Gillespie was only ever stopped by his own exhaustion. That I can also appreciate, being a cantankerous, stubborn type myself.
Intriguingly, LB really disliked being photographed using his crutches to get around. That was interesting! I've only seen one pic of him using crutches outside a film. I'll likely not post it, but I found that reluctance interesting. When I have to use crutches or, very occasionally my wheelchair, I brace for questions and that stupid, inane "poor thing" voice. So I developed a response that, while I have yet to use it, I think will halt any probing. When asked "what happened?" (recall my MS comes & goes, sometimes day by day), I want to reply "they never took the bullet out of my spine". Ha!
There's a lot to ponder on this, and I still need to finish coding the Kildare/Gillespie films! I'm not only intrigued, psyched, even inspired, but also in awe of Lionel Barrymore for his persistence. Seriously. Chronic illness as he seemed to have had is a pain in the ass, a huge no-no in our world today too unless you "rise above!" it and are a "supercrip", to use a phrase used sometimes in disabled folk's writing as shorthand for "the person who lost legs/lost half a brain, etc, but rises above all and competes in the Olympics." The most recent of that type apparently killed his girlfriend in South Africa. Yes, there's an occasional dark side to my bloggish humor.
Do I think LB would mind the bleak humor? Not at all! I'm looking forward to exploring this much more, too. Meanwhile...thank you, Mr B.
* "chromium contraption" was what LB called his chair in a neat
postscript in the first Ayres/Barrymore film, Young Dr Kildare. He and
Lew Ayres appear at the end of the film as themselves. Funny bit, too.
Mr. B had no pretense of being any kind of hero or "supercrip", but really felt driven to keep working and had a studio (MGM) whose head both personally like Barrymore and who wasn't stupid enough to think he could let such a good, popular actor slip away. Once in a while, extremely rarely, he would use crutches in a film, and could use them if he needed to in daily life, but he truly disliked them. I am utterly fascinated by him and his acting, and yes, his work before 1938. Fascinated person.
If you're wondering how he got to BE in the wheelchair-- you should go read the bio, etc on my blog! Brief biography of Lionel Barrymore*
*yes, he's Drew's great-uncle; his brother John was Drew's grandfather
Weekend Wheelchair Musings
In reading about LB and his chair, what I found interesting is the Kildare films were done so well (Bucquet directing very nicely many) the wheelchair became almost irrelevant to the plot. Now and then, we are reminded of the good Dr. Gillespie's need for it, but the doc himself is never an object of pity. We learn very quickly there's nothing to pity about Dr. G!
There are the typical "hero" disabled person moments spoken by others, as when an aside is used to "prepare" people who are about to meet Dr. G for the first time, along the lines of "he's brilliant, but his legs are hopelessly crippled". They become fewer as the films continue. I've seen that used in just about every film with someone in a wheelchair who has a major part. Now, I can see the need to establish the background story quickly, but seemingly, given the popularity of the films, LB was the attraction, and the fact he was acting circles around people while IN a wheelchair meant his skill "normalized" for viewers a person in a wheelchair.
I'm not claiming he did this all on his own, or that he even meant it to happen. He does note he's a good "jockey" in his chair and doesn't mind answering or forwarding to his chair manufacturer letters from the public about it. Others, including Ronald Reagan, noted the already skilled scene-stealer would use his "chromium contraption"* to great use in dominating a scene--even smacking into people's shins with the wheels. LB is absolutely masterful in the films in the way he moves his chair to emulate what he'd likely be doing on two feet. It's really astonishing.
I think without LBs incredible talent, a shift in the audience's acceptance of a character in a wheelchair who actually USED a chair in life would not have happened. How many actors in wheelchairs who really need them can you think of? I think the financial success of the films testifies to the acceptance of Dr. G and he seemed to walk-off, if you will, with just about every Kildare film. Gillespie was only ever stopped by his own exhaustion. That I can also appreciate, being a cantankerous, stubborn type myself.
Intriguingly, LB really disliked being photographed using his crutches to get around. That was interesting! I've only seen one pic of him using crutches outside a film. I'll likely not post it, but I found that reluctance interesting. When I have to use crutches or, very occasionally my wheelchair, I brace for questions and that stupid, inane "poor thing" voice. So I developed a response that, while I have yet to use it, I think will halt any probing. When asked "what happened?" (recall my MS comes & goes, sometimes day by day), I want to reply "they never took the bullet out of my spine". Ha!
There's a lot to ponder on this, and I still need to finish coding the Kildare/Gillespie films! I'm not only intrigued, psyched, even inspired, but also in awe of Lionel Barrymore for his persistence. Seriously. Chronic illness as he seemed to have had is a pain in the ass, a huge no-no in our world today too unless you "rise above!" it and are a "supercrip", to use a phrase used sometimes in disabled folk's writing as shorthand for "the person who lost legs/lost half a brain, etc, but rises above all and competes in the Olympics." The most recent of that type apparently killed his girlfriend in South Africa. Yes, there's an occasional dark side to my bloggish humor.
Do I think LB would mind the bleak humor? Not at all! I'm looking forward to exploring this much more, too. Meanwhile...thank you, Mr B.
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| The grand old man, Key Largo, 1948. LB's disability is used to effect in the film. |
Friday, July 08, 2016
The (too) long hot summer
Yeah. It's hot out this way. A spring during which we almost drowned with rain, and now a stupid-hot summer. No, not as hot as Yuma, AZ, where I lived 7 years. But still. Fricking hot.
After my two-month relapse from May, I've managed to get severely overheated once, in St Louis at a conference, and mildly overheated a couple of times. I've caned about a few times, but now only have a cane and crutches in my car. I presume the tecfidera is doing the job, but I'm unnaturally fatigued always now. The hardest part of my work year just ended, though, and I'm anticipating catching up on sleep, oh, by the end of the year! Nope, I'm still not being very good at taking the Tec like I'm supposed to. It still occasionally will give me stomach problems.
Interestingly, and it's something that may change future treatment, my oldest brother was just Dxed with RA. That makes our mom, him, and me all with diagnosed autoimmune problems. She had the milder form of scleroderma. Now, they are wildly different, but still immune system issues. I kind of wonder what genetically we are carrying about. They are five of us siblings, and two have some autoimmune problem. Hmm. Yet another thing to research!
My Barrymoring also carries on. I need to focus on finishing the film coding soon and figuring out how to narrow my focus. I'm still utterly fascinated by his life and acting. So I will leave you with, yes, Lionel Barrymore, ladles and gentlemints!
After my two-month relapse from May, I've managed to get severely overheated once, in St Louis at a conference, and mildly overheated a couple of times. I've caned about a few times, but now only have a cane and crutches in my car. I presume the tecfidera is doing the job, but I'm unnaturally fatigued always now. The hardest part of my work year just ended, though, and I'm anticipating catching up on sleep, oh, by the end of the year! Nope, I'm still not being very good at taking the Tec like I'm supposed to. It still occasionally will give me stomach problems.
Interestingly, and it's something that may change future treatment, my oldest brother was just Dxed with RA. That makes our mom, him, and me all with diagnosed autoimmune problems. She had the milder form of scleroderma. Now, they are wildly different, but still immune system issues. I kind of wonder what genetically we are carrying about. They are five of us siblings, and two have some autoimmune problem. Hmm. Yet another thing to research!
My Barrymoring also carries on. I need to focus on finishing the film coding soon and figuring out how to narrow my focus. I'm still utterly fascinated by his life and acting. So I will leave you with, yes, Lionel Barrymore, ladles and gentlemints!
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| As Andre Dakkar in The Mysterious Island, 1926/29. Purr... |
Thursday, June 23, 2016
The unbearable timewasting of internet research
So it's been a hectic time in my life, personal and work, and of course bad news rains down like fire and brimstone in the world. I'm not totally liking Tecfidera yet and got way overheated twice already this summer, leaving me with spaghetti-legs. I try to dodge a lot of it by reading a British paper online (The Guardian), but things seep in to my FB feed, of course. So I've been working on research on two articles mentioned prior, on Lionel Barrymore and the influence his necessary wheelchair-use in films may have had on the reception of disabled people.
Y'all may not have figured this out by now, but I'm a pretty good and often obsessive researcher. So for this guy, whose acting career spanned on screen alone 1911- 1953 (!), there's a lot to research even if I limit myself to 1938-1947, the Kildare-Gillespie years where he appeared in a wheelchair. I wanted to share a few interesting pics I found..cuz I can. I need to think about starting a blog JUST for Lionel Barrymore. But I digress!
I like this pic because it shows LB's character, Dr. Leonard B. Gillespie, in his chair interacting with a young, quite happy boy who has a leg crippled by some unsaid problem. When Gillespie asks the boy what he's dressed up for, the boy responds cheerily, "I'm a cripple!" There's a great comfort level between them, both reacting to the other as near-equals.
Here, the same two characters meet, and the doctor is going to give the boy a pair of roller skates if he can walk a prescribed distance. The brace the boy had in on the bed behind him, but Gillespie remains in his chair. This running story across two or three films is really very sweet. For an old grumpy character, Gillespie (and Barrymore, apparently) seem very at home with children. Of course, the debate is....are children really honest about observing and reacting to disability or do we ignore their reaction, or what? In the films, several kids ask him about his chair.
This was a fantastic find, because it complicates the character and people's reaction to wheelchairs. Not everyone in a wheelchair is unable to stand, and like me, some only use a wheelchair now and then because of leg weakness or whatnot. What's interesting as well is it makes it very clear Barrymore was a tall (5'10or more) man as well as a big man. No one in the scene is shocked he's standing--they're shocked by the suit he's wearing, which he tells them he bought in... 1899. :)
And then there's this pic, which I adore and stumbled upon accidentally. On the right is a forty-four year old Lionel Barrymore, velvet britches, leather boots, and all. Ridiculously handsome cuss!
From obsessive viewing of his films, I know that visible indications of the arthritis, etc which was to lead later to his painful need for a wheelchair probably appeared about 1923-24. There are many stories, well-attested, to his need for painkillers and addiction to then-uncontrolled morphine by 1925-26. He managed in spite of serious pain to act in many, many great films, over 30 after he was in his wheelchair full time. In one, Down to the Sea in Ships, he spent most of his time standing or moving about on crutches.
It is funny how in researching his whole life I see evidence of the same kind of back and forth adaptation to change, the frustration, anger, resentment over not being able to do what one wants all the time. Could I have done what he did with the relatively primitive medications and regimes they had in the 20s-40s? I have no idea. But it seemed a fantastic hell.
Then again, what are we all supposed to do? Roll over and die? Oh no... I'm taking a lot of people with me!
Y'all may not have figured this out by now, but I'm a pretty good and often obsessive researcher. So for this guy, whose acting career spanned on screen alone 1911- 1953 (!), there's a lot to research even if I limit myself to 1938-1947, the Kildare-Gillespie years where he appeared in a wheelchair. I wanted to share a few interesting pics I found..cuz I can. I need to think about starting a blog JUST for Lionel Barrymore. But I digress!
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| Lionel Barrymore and Bobs Watson, 1938, Young Dr Kildare |
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| LB and Watson again, in Calling Dr Kildare, 1939. |
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| Dr Kildare's Wedding Day,1941. I am not sure if this confused people, but it's the only time in the series Barrymore stood on his own. He then sits back in his chair. |
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| Enemies of Women, 1923, Barrymore on the right |
From obsessive viewing of his films, I know that visible indications of the arthritis, etc which was to lead later to his painful need for a wheelchair probably appeared about 1923-24. There are many stories, well-attested, to his need for painkillers and addiction to then-uncontrolled morphine by 1925-26. He managed in spite of serious pain to act in many, many great films, over 30 after he was in his wheelchair full time. In one, Down to the Sea in Ships, he spent most of his time standing or moving about on crutches.
It is funny how in researching his whole life I see evidence of the same kind of back and forth adaptation to change, the frustration, anger, resentment over not being able to do what one wants all the time. Could I have done what he did with the relatively primitive medications and regimes they had in the 20s-40s? I have no idea. But it seemed a fantastic hell.
Then again, what are we all supposed to do? Roll over and die? Oh no... I'm taking a lot of people with me!
Wednesday, May 25, 2016
How do YOU celebrate World MS Day??
...apparently I do so by forgetting I had a workshop to present to my students. SRSLY. I think I looked like this when I realized:
I am really very good about reminders, calendar use, etc, but this just slipped away on some puckish malfunctioning synapse. Well, that and I stayed up talking to my sister for six hours and went to bed at 4am. The struggle is real.
I am sort of laughing it off, but since I also forgot to take my Tecfidera this morning, I realize I need to reassess my planning and coping skills and slow the hell down. I think that's how I'll celebrate World MS Day--slow down.
My sister and I talked a great deal about how we both kind of bulldoze through whatever needs to be done. She was there with me when I got my MS Dx in 2009, and we both did our own coping thing--me saying "well, ok, what now?" and getting right into a clinical trial. I have no doubt that trial (for Ocrelizumab, soon to be approved) saved my much-overinflamed brain. And really, MS gave me no choice then, sooo..
But it did slow me down in some ways, and after my 2 month relapse which started March 5, I was reminded forcibly that yes, I'm sick, and yes, it's not going away, and yes, you will need to find time to rest and slow the hell down. I've been quite fortunate, but it feels like I probably did work myself to the point of needing to rest, perhaps ignoring enough to slip into a relapse--some of y'all know the feeling.
So this World MS Day, I'm grateful for my awesome job and awesomer boss, for a good enough brain so that enough synapses take up the slack for the burned out ones, and that I do have a sense of humor about it all. Now, what I need is a personal assistant to force me to sleep and/or rest. That would be the "most perfectest" Rx ever.
Enjoy the day, slay your demons, and smile as you plow through the obstacles. Then nap. Srsly.
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| Lionel Barrymore as insane Prof Leroy in The 13th Hour, 1927 |
I am really very good about reminders, calendar use, etc, but this just slipped away on some puckish malfunctioning synapse. Well, that and I stayed up talking to my sister for six hours and went to bed at 4am. The struggle is real.
I am sort of laughing it off, but since I also forgot to take my Tecfidera this morning, I realize I need to reassess my planning and coping skills and slow the hell down. I think that's how I'll celebrate World MS Day--slow down.
My sister and I talked a great deal about how we both kind of bulldoze through whatever needs to be done. She was there with me when I got my MS Dx in 2009, and we both did our own coping thing--me saying "well, ok, what now?" and getting right into a clinical trial. I have no doubt that trial (for Ocrelizumab, soon to be approved) saved my much-overinflamed brain. And really, MS gave me no choice then, sooo..
But it did slow me down in some ways, and after my 2 month relapse which started March 5, I was reminded forcibly that yes, I'm sick, and yes, it's not going away, and yes, you will need to find time to rest and slow the hell down. I've been quite fortunate, but it feels like I probably did work myself to the point of needing to rest, perhaps ignoring enough to slip into a relapse--some of y'all know the feeling.
So this World MS Day, I'm grateful for my awesome job and awesomer boss, for a good enough brain so that enough synapses take up the slack for the burned out ones, and that I do have a sense of humor about it all. Now, what I need is a personal assistant to force me to sleep and/or rest. That would be the "most perfectest" Rx ever.
Enjoy the day, slay your demons, and smile as you plow through the obstacles. Then nap. Srsly.
Monday, May 23, 2016
Super crips and side effects: LB= Little Blue pills and Lionel Barrymore
Caption for above: "I'm not her father! YOU are!" Lionel Barrymore's character (rt) to Lon Chaney's in West of Zanzibar, 1928. Ironically, Chaney did not end up in a wheelchair--but by 1928, Barrymore was constantly requiring painkillers and not in great physical shape.
So Tecfidera (little and blue!) has proven, at full dose, to be QUITE the pain in the intestine. I've never had stomach side effects,and taking two doses a day has killed me. I'm down to one a day because I can almost tolerate it IF I remember to eat a high-fat, high-calorie breakfast (and I've lost about ten pounds over a month and a half). Managing to keep something in my stomach all day has not been successful.
Now, does it work? Per my neuro at last appointment last week, yes, it does. March 5th I was using crutches, then I had a week on crutches, cane, and wheelchair, then started Tec...and I can walk, hallelujah! I begin to think when my gut knots up that hey, crutches aren't TOO bad, right? I can't wait for Ocrelizumab to come out, hopefully December!
So what I did in part those 2 weeks or so I hid out by the bathroom was watch Lionel Barrymore films of all kinds, not just Kildare/Gillespie, and start collecting articles and clippings, especially reviews, of his films. The most astonishing thing is I'm having a hard time determining which wheelchair he used! I know it could only be one of say two companies, but I can't find the patent for the specific chair! I'll need to visit our local Military Medical Museum (Fort Sam Houston) to see if they can help, but hey, here's a good pic of LB in it if anyone knows:
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| Circa 1940 (his crutches are behind) Note the unique rear caster axle set up. This one folded. |
But doing research on Barrymore's life and adaptability to his need for the wheelchair has been a great distraction. Certainly there's a quantitative article in it--after I'm done watching and coding the films for whatever, I'll be able to show a certain pattern or prevalence of disability "visibility". Having access to most of the films' box-office records tell me that the films (Kildare/Gillespie) were ENORMOUSLY popular. Barrymore himself seemed to deal with the need for the wheelchair pretty practically, though I'm still working on finding correspondence about it. I know he was a kind of Celebrity Chair of the National Arthritis Research Foundation when it was established in the 1940s. His bio makes it clear he made the very best life he could--adapted car, crutches when needed, and a studio pretty willing to accommodate the needs of their best character actor. Still, he was in a great deal of pain from joint inflammation ( and possibly poorly healed hip fractures) from the 1920s onward, and severe joint swelling and alteration structure is apparent in his films from the 20s on, especially obvious in his left hand.
Certainly from 1938 onward Lionel Barrymore did not exactly slow down in his career. He made about 35 films from 1938 to 1953 in a wheelchair or on crutches if we count from Young Dr. Kildare onward (leaving out You Can't Take it With You, A Yank at Oxford, etc from 1938 and start with the one role written for him in his wheelchair). He also narrated several films and of course was on radio extensively from the 30's onward. Throughout Down to the Sea in Ships (1949), he was using crutches (which he claimed to hate in real life, though he did use them now and then) and has a few frighteningly active scenes his double could not do thanks to the need for close-ups.
I'm not sure what makes some people thrive under very rough situations, as Barrymore did. I myself don't have many choices on not doing as well as I can--right now I'm the only one in the family of two working, as my spouse is mid-cochlear implant-process and we hope to get that surgery done in June. I tolerate certain kinds of pain very well, but others, like the stomach problems, I really have a difficult time with. The week I was quite unable to walk because my legs weren't behaving, I found crutches a little less a problem than a wheelchair, but also, I was acutely aware one causes more distress than the other in public. I work with only 25 very talented students and I know it's easier to see me one day walking and the next on crutches than a wheelchair. I am able to laugh most questions off, and on crutches everybody thinks it's my ankle that's the problem. When I say "It's my brain," I think most don't even hear it. I try to say "It's a long story." My favorite lie that I have yet to really use is to frown and say "well, they didn't get all of the bullet out of my spine." Seems, unless I'm talking to a physician, to be a sure question-stopper. I don't want to be either a crip role model or a "poor thing" object of pity. Few seem to manage a balance between seeing me and seeing my assistive technology when I need it. But I'm a stubborn cuss.
While I think Lionel Barrymore did not credit himself with much in the way of role model-potential for people with disabilities, he certainly fielded many questions about his own wheelchair use and make, and he seemed comfortable with his life. His films rarely even made the chair a part of the story, though the Kildares sometimes gave him a chance to puncture pity-balloons. I think his persistence, ability, and some good writing meant he smoothed a path for wheelchair users in the US, and I think (and my thesis is) that the popularity of the films and him personally meant returning disabled vets of WWII experienced a different reception than those of WWI. That's what I'm aiming to prove, in any event.
I don't know what kind of crip I will be in the next ten or twenty years, and it's a term I use as an on-and-off gait-disabled person. The title of the blog pokes fun as well, and on Facebook I am "She who gimps between the rows". It's tongue in cheek, but the slow process of becoming a SuperCrip is more arduous than perhaps I anticipated when I was diagnosed with MS 8 years ago. By that point, I'd been using a cane for almost two years. I'd almost lost my sheepishness about it--almost. I can really fly along on crutches, though they can be a pain--did you know you can order custom wood crutches made on the same crutch wood "molds" used for Civil War-era crutches? Me neither!
I do think it would be helpful in the extreme to enter into criphood with great insurance, great support, a good salary, and a very flexible job and partner. And a lot of humor, determination, and sometimes straight pigheadedness to adapt well. Do what you have to to make money, thrive, survive--be creative. As Lionel Barrymore once wrote, "Anyone can be an actor. And if you need five dollars, you can be a writer too."
Who knows? Perhaps one day my supercrip jottings will go platinum and I can sit on my rear and write and research to my heart's content! But however, I do have insurance, a good job and great boss, and my mind is intact enough to still research all I want and hopefully write some.
And sorry, but you'll have to put up with more Barrymore-ing as I work my way through this article. I'll try to add more specific to MS and Tecfidera, but it's hard to say a lot more than DAMN both bite!
Thursday, April 14, 2016
Disability research can be fun! And so can tecfidera :)
...seriously, though, it can be. I've decided to work on an article (or two) on the impact of Lionel Barrymore's Dr Gillespie character in the 30s-40s Kildare/Gillespie series of films. There's been some work done out there on the impact Barrymore's wheelchair use in films (he worked almost exclusively in a wheelchair due to arthritic pain and injury from 1938 till his last film in 1953, one of the very few actors to actually be in a wheelchair and act) may have had on the "normalizing" of wheelchairs and users. Now, it seems the evil 50s undid some of that work on screen, with the return of evil/victim/"super-crip" wheelchair users, but I have to admit, the popularity of the Kildare series and Baryrmore's really high profile is something unique to the time.
Anyway, so it's been fun because I get to watch all 9 Kildare films and all 6 Gillespie films for quantitative analysis first (article 1), then take that and work up an article on the impact those films had on public perception of wheelchairs/users. I'm very glad I can watch them on a computer so I can grab images to help explain what I'm trying to do. Here's a couple:
I'm learning a lot about how much work went into creating the character and filming him--Barrymore had by this time been working at MGM for almost 15 years and after he had to use a wheelchair, he made 36 films, not counting narrations. He was considered both too popular and good to let languish, and the Kildare films were incredibly popular and profitable for MGM, which made 2-3 a year.
And besides all that, Lionel Barrymore was a great actor! It's been fun to watch the Kildare films and explore his other work. It makes my tired brain, which is finally coming out of a relapse, feel better.
To that purpose, the Tecfidera I started seems to be working out. I haven't had any side effects I notice, and my tummy is pretty much made of iron. I don't anticipate tummy upset. I'm not too worried about PML, especially since that month of relapse was horrible. We're still waiting on the ocrelizumab to be approved, which would be fantastic. It was a godsend when I was in the Phase II trial for it 8 or so years ago now (2009). Even better if it helps PPMS too.
Off to work and do more coding and watch more Barrymore. Cute cuss in his time, too:
Anyway, so it's been fun because I get to watch all 9 Kildare films and all 6 Gillespie films for quantitative analysis first (article 1), then take that and work up an article on the impact those films had on public perception of wheelchairs/users. I'm very glad I can watch them on a computer so I can grab images to help explain what I'm trying to do. Here's a couple:
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| Lew Ayres & Lionel Barrymore, Dr. Kildare's Wedding Day (LB did play piano and composed--one of his pieces is played at the end of this film) |
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| First entrance of Dr. Leonard B. Gillespie in the series, in Young Dr. Kildare, 1938 |
And besides all that, Lionel Barrymore was a great actor! It's been fun to watch the Kildare films and explore his other work. It makes my tired brain, which is finally coming out of a relapse, feel better.
To that purpose, the Tecfidera I started seems to be working out. I haven't had any side effects I notice, and my tummy is pretty much made of iron. I don't anticipate tummy upset. I'm not too worried about PML, especially since that month of relapse was horrible. We're still waiting on the ocrelizumab to be approved, which would be fantastic. It was a godsend when I was in the Phase II trial for it 8 or so years ago now (2009). Even better if it helps PPMS too.
Off to work and do more coding and watch more Barrymore. Cute cuss in his time, too:
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| 1929, The Mysterious Island |
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| Newest tattoo, LB as Davidson in Sadie Thompson, 1928. I'll be getting his brother John as Hamlet on my other calf at the end of the month. Yes, I have a few tattoos, all of which I can if I choose cover up :) |
Wednesday, March 23, 2016
HAPPY BIRTHDAY!! And grump, grump, grump...
3-21-16
My nephew turns 25 today! I'm glad he seems to be in good health, happy, a good man. Because his aunt is decidedly not.
In honor of MS Relapse Awareness Week, I apparently have decided to deal with my first real relapse in probably 7-8 years. LEGS aren't carrying me, lots of crutching, cane, even wheelchair use now n then since March 5. Doc has me in the old high dose cycle of prednisone, and I'll be trying Tecfidera as soon as the PTB of insurance and pharmaceutical companies do their magic.
I'll admit I'm quite frustrated, annoyed, bummed... At the same time this is going on, our admin is out still waiting to have her baby, summer work is revving, and I have three grad courses I'm trying to do. I didn't really feel anything coming on, but holy cow, I'm just not in a great place with this. Maybe it's just I feel I am so much older and I've been so much more tired.
So f**k you, MS. I want no orange butterfly badges, no attagirls, no questions, frankly. I think I'll just wear a shirt with an image of my two most massive lesions from 2008, on either motor cortex. Sigh.
What a horribly demented disease for someone in education, required and well trained to use a pretty fast mind to have. I mean, honestly, what a terribly demented disease, period.
My nephew turns 25 today! I'm glad he seems to be in good health, happy, a good man. Because his aunt is decidedly not.
In honor of MS Relapse Awareness Week, I apparently have decided to deal with my first real relapse in probably 7-8 years. LEGS aren't carrying me, lots of crutching, cane, even wheelchair use now n then since March 5. Doc has me in the old high dose cycle of prednisone, and I'll be trying Tecfidera as soon as the PTB of insurance and pharmaceutical companies do their magic.
I'll admit I'm quite frustrated, annoyed, bummed... At the same time this is going on, our admin is out still waiting to have her baby, summer work is revving, and I have three grad courses I'm trying to do. I didn't really feel anything coming on, but holy cow, I'm just not in a great place with this. Maybe it's just I feel I am so much older and I've been so much more tired.
So f**k you, MS. I want no orange butterfly badges, no attagirls, no questions, frankly. I think I'll just wear a shirt with an image of my two most massive lesions from 2008, on either motor cortex. Sigh.
What a horribly demented disease for someone in education, required and well trained to use a pretty fast mind to have. I mean, honestly, what a terribly demented disease, period.
Monday, March 07, 2016
MS AWARENESS MONTH AND I GET IT, I'M AWARE...
So for two years I organized a zumbathon to raise MS funds in March. This month, no such plans, but I find myself hyperaware of my MS.
I'd been doing fairly well, got off Plegridy because of really uncontrollable side effects, still taking adderall to cope with fatigue. but the last couple of days the fatigue has ramped up into lassitude and I can't even drive and sing along to music in the car because I get SO tired! Walking is ridiculous, as it takes a huge amount of energy to go anywhere more than about 20-30 feet.
I'm trying crutches now, but they are jarring and it's still quite tiring. Of course, having a job that requires thinking also wears me out. We will see if I make my night class tonight.
Ironically, I'm revisiting disability as subject for research, spurred by rediscovering Lionel Barrymore. He was in a wheelchair in films from about 1938 on, and did a whole hoop of films prior to his death in 1954. I've loved his brother John since probably my early teens, but hadn't paid much attention to Lionel except in Grand Hotel until recently. I have been youtube-ing films and find myself fascinated by him. Quite a good, interesting actor. So I'll be looking closely at Key Largo (1948) and how his wheelchair plays a role in different ways. Already know another scholar has done wheelchairs in film and even got an nice response to my email to him. That was quite kind, actually.
I've already worked on John Callahan and Dr House, and I find it funny I knew about but didn't make the connections with Dr Gillespie in the Dr. Kildare movies of the 40s. Once more, Lionel Barrymore as Dr G! It's nice to have my brain focused on something specific. I do love research.
But OH, how I'm hating this terrific weakness/tiredness. We will see if the dr is up to seeing me or if I should just invest in that energy-saving wheelchair thing.
(Bogart, Bacall, Barrymore in "Key Largo", 1948)
I'd been doing fairly well, got off Plegridy because of really uncontrollable side effects, still taking adderall to cope with fatigue. but the last couple of days the fatigue has ramped up into lassitude and I can't even drive and sing along to music in the car because I get SO tired! Walking is ridiculous, as it takes a huge amount of energy to go anywhere more than about 20-30 feet.
I'm trying crutches now, but they are jarring and it's still quite tiring. Of course, having a job that requires thinking also wears me out. We will see if I make my night class tonight.
Ironically, I'm revisiting disability as subject for research, spurred by rediscovering Lionel Barrymore. He was in a wheelchair in films from about 1938 on, and did a whole hoop of films prior to his death in 1954. I've loved his brother John since probably my early teens, but hadn't paid much attention to Lionel except in Grand Hotel until recently. I have been youtube-ing films and find myself fascinated by him. Quite a good, interesting actor. So I'll be looking closely at Key Largo (1948) and how his wheelchair plays a role in different ways. Already know another scholar has done wheelchairs in film and even got an nice response to my email to him. That was quite kind, actually.
I've already worked on John Callahan and Dr House, and I find it funny I knew about but didn't make the connections with Dr Gillespie in the Dr. Kildare movies of the 40s. Once more, Lionel Barrymore as Dr G! It's nice to have my brain focused on something specific. I do love research.
But OH, how I'm hating this terrific weakness/tiredness. We will see if the dr is up to seeing me or if I should just invest in that energy-saving wheelchair thing.
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