Tuesday, January 10, 2017

Happy (?) New Year

Well for my first post here of the new year, I do want to wish my 2.5 readers a good, joyous new year with healing and love. Having said that...

Good lord, 2016! And I just mean for myself. My first relapse in about 7 years, struggling to get that under control, and almost succeeding, first case of optic neuritis, lots of cog fog...and no, I still don't think Tecfidera is working. And now, instead of the FDA approving Ocrelizumab for RRMS on December 28, they're pushing the decision to late March, to better look at manufacturing issues or what not (thankfully, not over safety concerns). Ever since the end of that Phase II trial I was in for it, I have been waiting for its approval...annnnnd I'm still waiting. PAH!

I aged a great, great deal last year, measure not just in the incredible increase in gray hairs but in my frustration with this stupid disease. I honestly don't think, given my career, that being able to walk is always the primary concern for me. I CAN'T THINK AS FAST I ONCE COULD. And without bragging, I can say I was and basically am still a very rapid thinker-- it's my job, it's what I've done my whole working life, it's part of my educational training, and it's me. I enjoy solving problems and moving on, I actually enjoy multitasking--

--well, I used to. And I am truly sick of people laughing and saying, "ha ha, well, now that just means you're like one of us" (I presume they mean "normal", non-MS, non-brain intensive-career people).  Well if I am, then I think it bites. I don't want to be "normal", I never have been, and even the MS can't make me normal; it just makes me feel broken sometimes. I have made a couple of "forgetful" errors that could have been dangerous (the classic left the stove on one didn't cause any damage) and it's frightening to me, even if yes, other people do forget things now and then. It's not the same, or it certainly doesn't feel the same.

I presume a few out there can relate to this. I've made some adjustments and I have a wonderful boss and coworkers who really, really are helpful and patient. So I know I am very lucky, even if my job is grant-funded and we're up for renewal in what could be an ominous education-funding year. I have insurance, a partner who is incredibly patient, and some lovely cat and dog children.

But I also have MS, and yeah, a lot of last year, it really DID have me.

Friday, September 30, 2016

Tired of Tec

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.

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! :)
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.

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

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.
The grand old man, Key Largo, 1948. LB's disability is used to effect in the film.
* "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.

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!
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!

Lionel Barrymore and Bobs Watson, 1938, Young Dr Kildare

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.

LB and Watson again, in Calling Dr Kildare, 1939.
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.

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.
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. :)

Enemies of Women, 1923, Barrymore on the right
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!

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:
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.