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:
Circa 1940 (his crutches are behind) Note the unique rear caster axle set up. This one folded.

I know the first real metal folding chair only came out in 1938 or so, by E&J, but this one does not appear to be a standard E&J from the period. It's the rear wheel set up that stands out. I now it had ball-bearing wheel axle/hubs, which would have made it remarkably maneuverable. Perhaps it's a Gendron? My own (older, used) folding chair with ball-bearing shaft/axle is MUCH easier to use than the brand new one I rented without similar wheels. It was bought by a friend for me, and is probably from the 80s, but in fantastic shape. Right now I live with a cane, a set of crutches, and a folding wheelchair in my car trunk.  It's a Multiple Sclerosis life!

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!

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